DEncyclopediaISABILITY of DEncyclopediaISABILITY of

GENERAL EDITOR GARY L. ALBRECHT University of Illinois at Chicago

ASSOCIATE EDITORS JEROME BICKENBACH Queens University DAVID T. MITCHELL University of Illinois at Chicago WALTON O. SCHALICK III Washington University, St. Louis SHARON L. SNYDER University of Illinois at Chicago

ILLUSTRATIONS EDITOR SHARON L. SNYDER

VOLUME III Copyright © 2006 by SAGE Publications, Inc.

All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.

Utagawa Kuniyoshi. Portrayal of the Physician Hua T'o Scraping the Bone of the Warrior Guan Yu to Heal an Instance of Necrosis. 1853. Color woodblock print, ôban triptych, 15 in. × 10 in. each. Reprinted by permission of the Wellcome Trust.

For information: Sage Publications, Inc. 2455 Teller Road Thousand Oaks, California 91320 E-mail: [email protected] Sage Publications Ltd. 1 Oliver's Yard 55 City Road London EC1Y 1SP Sage Publications India Pvt. Ltd. B-42, Panchsheel Enclave Post Box 4109 New Delhi 110 017 India

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Library of Congress Cataloging-in-Publication Data

Encyclopedia of disability / general editor, Gary L. Albrecht. p. cm. Includes bibliographical references and index. ISBN 0–7619–2565–1 (cloth) 1. People with disabilities—Encyclopedias. 2. Sociology of disability—Encyclopedias. 3. Disability studies—Encyclopedias. I. Albrecht, Gary L. HV1568.E528 2006 362.4′03—dc22 2005018301

This book is printed on acid-free paper.

05060710987654321

Publisher: Rolf A. Janke Developmental Editor: Sara Tauber Project Editor: Diana E. Axelsen Copy Editor: Kate Peterson, Judy Selhorst, Gillian Dickens, Rachel Hile Bassett Typesetter: C&M Digitals (P) Ltd. Proofreader: Colleen Brennan Indexer: Mary Mortensen Cover Designer: Michelle Lee Kenny CONTENTS

General Editor and Associate Editors vi Senior Editorial Board vii International Advisory Board viii List of Entries xi Reader’s Guide xix Primary Sources in Volume V xxxv List of Illustrations in Volume V xlv

Volume I: A–D Volume II: E–I Volume III: J–R Volume IV: S–X

Master Bibliography 1657 Index 1779

Volume V: Primary Sources

Part One: Origins of Disability Part Two: Modernity and Normalization Part Three: Culture and Resistance

Chronology C1

Searching for and Evaluating Websites W1 Anne Armstrong Assistant Reference Librarian, University of Illinois at Chicago GENERAL EDITOR

Gary L. Albrecht University of Illinois at Chicago

ASSOCIATE EDITORS

Jerome Bickenbach Queens University

David T. Mitchell University of Illinois at Chicago

Walton O. Schalick III Washington University in St. Louis

Sharon L. Snyder University of Illinois at Chicago

vi SENIOR EDITORIAL BOARD

Scott Campbell Brown United States Department of Education

Dudley S. Childress Northwestern University

Joseph Flaherty University of Illinois at Chicago

Allen W. Heinemann Rehabilitation Institute of Chicago

Tamar Heller University of Illinois at Chicago

Christopher B. Keys DePaul University

Trevor R. Parmenter University of Sydney

Mariam Scott-Hill Deceased

Tom Shakespeare University of Newcastle

vii INTERNATIONAL ADVISORY BOARD

Avard, Denise Frontera, Walter R. University of Montreal Harvard Medical School Barral, Catherine Fuhrer, Marcus J. Centre Technique National d’Etudes et de Recherche National Institutes of Health, sur les Handicaps et les Inadaptations Columbia, Maryland (CTNERHI), Paris, France Fujiura, Glenn T. Beresford, Peter University of Illinois at Chicago Brunel University/Shaping Our Lives, London Garland Thomson, Rosemarie Borell, Lena Emory University Karolinska Institutet Gerber, David A. Brubaker, Clifford E. State University of New York at Buffalo University of Pittsburgh Ghai, Anita Burch, Susan New Delhi, India Gallaudet University Gill, Carol J. Bury, Michael University of Illinois at Chicago Royal Holloway, University of London Gray, David B. Campbell, Suzann K. Washington University in St. Louis, Missouri University of Illinois at Chicago Grimby, Gunnar Corrigan, Patrick W. Göteborgs University and Sahlgrenska University University of Chicago Hospital, Sweden Davis, Lennard J. Groce, Nora Ellen University of Illinois at Chicago Yale University deLateur, Barbara J. Hedman, Glenn Johns Hopkins University University of Illinois at Chicago Enders, Alexandra Heumann, Judith E. University of Montana World Bank Ferguson, Philip M. Holland, Anthony University of Missouri at St. Louis Cambridge University, United Kingdom French, Sally Ito, Akiko Open University, United Kingdom

viii List of International Advisory Board ix

Kasnitz, Devva Scotch, Richard K. University of California, Berkeley University of Texas at Dallas Kielhofner, Gary Seelman, Katherine D. University of Illinois at Chicago University of Pittsburgh Kleijn–de Vrankrijker, Marijke W. de Shepherd, Roberta WHO Collaborating Centre for the Family of University of Sydney, Cumberland International Classifications, the Netherlands Siebers, Tobin Kraus, Marilyn University of Michigan, Ann Arbor University of Illinois at Chicago Simeonsson, Rune J. Mak, Arthur F. T. University of North Carolina at Hong Kong Polytechnic University Chapel Hill Mann, Lynn Summerfield Stiker, Henri-Jacques South Bank University Paris VII, Paris, France Margherita, Anthony Swain, John Radiant Research, St. Louis, Missouri University of Northumbria at Newcastle Meekosha, Helen University of New South Wales Takeda Kawasaki, Noriaki University of Medical Welfare Murthy, R. Srinivasa BMS College of Engineering, Thomas, Carol Bangalore, India Lancaster University Newell, Christopher Ustun, T. Bedirhan University of Tasmania World Health Organization, Geneva Ravaud, Jean-Francois Van Hove, Geert CERMES, Paris, France Universiteit Gent Richards, Penny L. Vanderheiden, Gregg C. University of California, Los Angeles University of Wisconsin–Madison Rieser, Richard Waldschmidt, Anne Disability Equality in Education, London University of Cologne Rimmer, James H. Walsh, Patricia Noonan University of Illinois at Chicago University College Dublin Rose, M. Lynn Wasserman, David F. Truman State University, Kirksville, Missouri University of Maryland at College Park Schriner, Kay Zhuoying, Qui University of Arkansas China Rehabilitation Research Center LIST OF ENTRIES

AAATE. See Association for the Agoraphobia Association for the Advancement Advancement of Assistive Aids for Activities of Daily of Assistive Technology in Technology in Europe Living Europe (AAATE) Ableism AIDS/HIV. See HIV/AIDS Asthma Abu 'l-`Ala al-Ma`arri Air Carrier Access Asylums. See Brigham, Amariah; Abu 'l Aswad ad-Duwali Alienation Dix, Dorothea; Fernald, Abuse and Hate Crimes Alternative Medicine. Walter; Fuller, Margaret Accessibility See Complementary and `Ata ibn Abi Rabah Accessibility Codes and Standards Alternative Medicine Attitudes Accessible Internet Alzheimer’s Disease Audio Description Accidents Americans Disabled for Audism Accountability Accessible Public Transit. Augmentative Communication Activism See ADAPT Augustine, Saint Activities of Daily Living (ADLs) American Disabled for Attendant Austin, Mary Hunter Acupuncture Programs Today. See ADAPT Australia. See Disability in Acute and Chronic Conditions Americans with Disabilities Act Contemporary Australia; ADAPT of 1990 (United States) Disability Studies: Australia ADLs. See Activities of Daily Amor Hereos (Lovesickness) Australian Rehabilitation Living. Amputation Assistive Technology Adoption and Foster Care Amputees at Persepolis Association (ARATA) Advertising Anthropology Autism Advocacy Antidiscrimination Law: Judicial Autobiography Advocacy, International Interpretations Aversive Therapies Advocacy Movements: France Antipsychiatry Movement Ayres, A. Jean Advocacy Movements: Germany Antisocial Personality Disorder Aesop Anxiety Disorders Baby Bollinger Aesthetic Surgery Aphasia Bank-Mikkelsen, Niels Erik Aesthetics Apraxia Barbellion, W. N. P Affirmative Action. See Quota ARATA. See Australian Barker, Roger Garlock Hiring Policy Rehabilitation Assistive Bashshar ibn Burd Affirmative Businesses Technology Association Beecher, Henry Knowles Africa. See Deaf People in Archaeology Beers, Clifford Whittingham African Histories; Disability in Aristotle Begging Contemporary Africa; Arnold, Ivan Karlovich Behavior Therapy Experience of Disability: Art Therapy Behavioral Disorders Sub-Saharan Africa Arthritis and Cartilage Diseases Bell, Alexander Graham Agassiz, (Jean) Louis (Rodolphe) and Injuries Bell’s Palsy Aging Asperger Syndrome Biesalski, Konrad Aging, International Assistive Technology Binet, Alfred xi xii Encyclopedia of Disablility

Bioethics Charity Costa Rica. See Experience of Biological Determinism Child Abuse Disability: Costa Rica Biomechanics Child Care Council of Europe Disability Bipolar Disorder Childhood, Youth, and Policy Black Report Adolescence Counsell, John Bladder Control Children of Disabled Parents Cretinism Blind, History of the Children with Disabilities, Crime and Delinquency Blindness and Visual Impairment Rights of Cripple Bobath, Berta and Karel China. See Disability in Crothers, Bronson Body, Theories of Contemporary China; Cruickshanks, William Borderline Personality Disorder Experience of Disability: Culture. See Deaf Culture; Bourne, Randolph China Disability Culture Bourneville, Désiré Magloire Chiropractic Care Cultural Context of Disability Bowel Control Christoffel-Blindenmission Cyborg Bowen, Robert Walter “Mike” Christoph, Franz Cystic Fibrosis Braille. See Blind, History of the; Chronically Sick and Disabled Blindness and Visual Persons Act of 1970 (United Dance Impairment; Braille, Louis Kingdom) Dart, Justin Braille, Louis Chuas of Shah Daulah, The Darwin, Charles Brazil. See Experience of Cicero, Marcus Tullius De Labat, B. J. G. Disability: Brazil Citizenship and Civil Rights de l’Épée, Abbé Charles-Michel Breast Cancer Civil Rights Backlash Deaf, History of the Bridgman, Laura Dewey Claparède, Édouard Deaf Culture Brigham, Amariah Classification in Paralympic Sport Deaf People at the Ottoman Court Broca, Paul Claudius, Emperor Deaf People in African Histories Browning, Charles Albert “Tod” Clever Hans Deafblindedness Buck (Eagle Detamore), Carrie College and University Deafness, Milan Congress of Buck, Pearl S. Education. See Education, 1880 on Bulwer, John College and University Deafness, on Martha’s Vineyard Bunker, Chang and Eng Colombia. See Experience of Death Burnout and Stress Disability: Colombia Death Penalty Burns Communication Decision Making Byron, Lord (George Gordon) Communication: Law and Policy Declaration on the Rights of Community Living and Group Disabled Persons (United Campanella, Roy Homes Nations). See United Nations Canada. See Disability Law: Community-Based Rehabilitation Declaration on the Rights of Canada Comorbidity Disabled Persons Canadian Centre on Disability Competence Deformity Studies Complementary and Alternative Degeneration Cancer Medicine Deinhardt, Heinrich Marianus Canguilhem, Georges Computer Software Accessibility Deinstitutionalization Capacity Building Computer Technology Delirium Cardiac Conditions Confinement Dementia Caregiving Confucius Carroll, Thomas J. Consent to Treatment Demosthenes Cartagena, Teresa de Consumer Control Depression Cartooning Consumer Satisfaction Desloges, Pierre Case Management Consumer-Run Businesses Developing World Cerebellar Ataxia Contracting Out Services Developmental Disabilities Cerebral Palsy Cosmologies of Morality Diabetes Changeling and Origin Diabolic Possession List of Entries———xiii

Dickens, Charles Disease Employment, International Diderot, Denis Disparity Empowerment and Emancipation Didymus the Blind Dissociative Disorders End-of-Life Care Digestive Diseases. Diversity Enns, Henry See Gastrointestinal Disabilities Dix, Dorothea Environmental Control Disability and Career Do Not Resuscitate (DNR) Epidemiology Development Orders Epilepsies, Temporal Lobe Disability Arts Documentary Film Epilepsy Disability Assessment/Evaluation, Doping in Paralympic Sport Esquirol, Jean Etienne Dominique Europe Dorris, Michael and Reynold Ethics Disability Convention (United Abel (“Adam”) Eugenics Nations). See United Nations Down Syndrome Eugenics: Germany Disability Convention Drama and Performance Europe. See Council of Europe Disability Culture Drug Abuse. See Substance Abuse Disability Policy; Disability Disability Discrimination du Pré, Jacqueline Law: Europe; European Act of 1992 (Australia). Dürer, Albrecht Commission Policy; European See Disability in Contemporary Dwarfism Disability Forum Australia Dybwad, Gunnar European Commission Policy Disability Discrimination Act of Dybwad, Rosemary F. European Disability Forum 1995 (United Kingdom) Dysarthia Euthanasia Disability in Contemporary Dyslexia Evaluation in Europe. Africa Dysphagia See Disability Disability in Contemporary Assessment/Evaluation, Europe Australia Early Childhood Intervention Evidence-Based Medicine Disability in Contemporary China Easter Seals Evolutionary Theory Disability in Contemporary India Eating Disorders Exercise and Physical Activity Disability Law: Canada Economic Analysis of Disability Exhibition Disability Law: Europe Economic and Social Experience Disability Law: Germany Development Experience of Disability: Brazil Disability Law: India. Economic and Social Experience of Disability: China See Disability Policy: India Development, International Experience of Disability: Disability Law: Sweden Economic Decision Making by Colombia Disability Law: United States the Disabled Experience of Disability: Costa Rica Disability Leave Edison, Thomas Experience of Disability: India Disability Management Education, College and Experience of Disability: Ireland Disability Policy: India University Experience of Disability: Japan Disability Policy: United States Education, International Experience of Disability: Disability Pride Education, Primary and The Netherlands Disability Rights Education and Secondary Experience of Disability: Defense Fund Education and Disability New Disability Rights of Children. Educational Assistive Technology Experience of Disability: Serbia See Children with Disabilities, Edward the Confessor Experience of Disability: Slovak Rights of E-Health Care/Telemedicine Republic Disability Studies Elderly. See Aging; Aging, Experience of Disability: Disability Studies: Australia International; End-of-Life Sub-Saharan Africa Disability Surveys Care; Frailty; Hip Fracture; Experience of Disability: Taiwan Disabled Peoples’ International Osteoporosis Explanatory Legitimacy Theory Disabled Persons’ Fundamental Elkin, Stanley Law of 1993 (Japan) Emerging Disabilities Facilitated Communication Disabled Veterans Employability Fair Housing Act Amendments of Discredited Therapies Employment 1988 (United States) xiv Encyclopedia of Disablility

Family Germany. See Advocacy Home Modification Family, International Movements: Germany; Home Support Family: Law and Policy Disability Law: Germany; Homer Feeblemindedness Eugenics: Germany Housing: Law and Policy Feminism Gesell, Arnold Human Rights Act of 1998 Feral Children Gilman, Charlotte Perkins (United Kingdom) Fernald, Walter Global Inequities Humanities Fetal Alcohol Syndrome Globalization Humors, Theory of Fibromyalgia Goddard, Henry Herbert Hunt, Paul Film Goethe, Johann Wolfgang von Hussein, Taha Financial Costs of Disability Gramsci, Antonio Hydrotherapy Financial Planning. See Economic Greek Amputees at Persepolis. Hypertension Decision Making by the See Amputees at Persepolis Hypochondria Disabled Group Therapy Hysteria Fleury, Victor Guggenbühl, Johan Jacob Folk Belief Guillain-Barré-Strohl Syndrome Ibn Al-Athir Folly Literature. See Literature, Guttmann, Ludwig Ibn Sirin Folly Gutzlaff, Agnes Ibn Umm Maktum Fools ICF/ICIDH. See International Foucault, Michel Hanawa, Hokiichi Classification of Functioning, Frailty Hand and Arm Manipulation Disability, and Health France. See Advocacy Handicap Identity Movements: France Handicap International IEP. See Individualized Education Freak Show Hanselmann, Heinrich Program Freud, Sigmund Hathaway, Katharine Butler Immigration: Law and Policy Fuller, Margaret Haüy, Valentin Immunologic Diseases Functional Assessment Hay, William Impairment Functional Measurement Health Inborn Errors of Metabolism Health Care and Disability Inclusion and Exclusion Gait Analysis Health Care Systems Inclusive Education Galen Health Management Systems Independent Living Gallaudet University. See Health Promotion India. See Disability in Gallaudet, Edward Miner Health Resource Contemporary India; Disability Gallaudet, Edward Miner Healthy People 2010 Policy: India; Experience of Gallaudet, Thomas Hopkins Hearing Impairment Disability: India; India, Impact Galsworthy, John E. Heath, Jeff of Gender in; India, Marriage Galton, Francis Hip Fracture and Disabled Women in Gastrointestinal Disabilities Hippocrates India, Impact of Gender in Gender History of Disability: India, Marriage and Disabled Gender, International Ancient West Women in Gene Therapy History of Disability: Individualized Education Genetic Counseling Early Modern West Program (IEP) History of Disability: Korea Individuals with Disabilities Genetics and Disabilities: Social History of Disability: Medical Education Act of 1990 (United and Ethical Dilemmas Care in Renaissance Europe States) Gennaro, Aldo History of Disability: Medieval Industrialization Genocide West Infant Stimulation Programs Geography and Disability History of Disability: Pleistocene Infanticide Georgens, Jan Daniel Period Infectious Diseases German Training Schools HIV/AIDS Infertility (Hilfsschulen) Hoffman, C. Colden Information Technology List of Entries———xv

Inspiration Knott, Margaret Melancholy Institutionalization and Segregation Korea. See History of Disability: Mental Health Insurance. See Risk and Risk Korea Mental Health: Law and Policy Selection Related to Insurance Ko-to-, Kuzuhara Mental Health Parity Interdisciplinary Team Kraepelin, Emil Mental Illness International Classification of Kyo-gen Comedy Mental Retardation, History of Functioning, Disability, and Mercy Killing. See Euthanasia Health (ICF/ICIDH) Labeling. See Stigma Michael IV, Emperor International Disability Lagovsky, Nikolay Mikhailovich Middle East and the Rise of Islam Organizations Lame, The Milan Congress on the Deaf. Internet. See Accessible Internet Lange, Dorothea See Deafness, Milan Congress Intersex Language of Disability of 1880 on Invalid Women L’Arche Mindfulness Meditation IQ Laryngectomy Mir Nasiruddin Harawi Ireland. See Experience of Latino Health Miracles Disability: Ireland Lavater, Johann Kaspar Mobility Aids Isolation Leadership Modalities Itard, Jean Marc Gaspard League of the Physically Model of Human Occupation Handicapped Models Jackson, William Henry Learning Disability Modernity Jahiz, Al- (Abu Othman Amr bin Leonard Cheshire Molecular, Cellular, and Tissue Bahr) Leprosy Engineering Japan. See Disabled Persons’ Leupolt, Jane Monsters Fundamental Law of 1993 Lewin, Kurt Montessori, Maria (Japan); Experience of Lichtenberg, Georg Christoph Moon, William Disability: Japan; Liliane Foundation Moscow Theater of Mime and Rehabilitation Engineering Literature, Folly Gesture Society of Japan (RESJA) Lobbying Movement of Disabled People, (Japan) Lohse-Wächtler, Elfriede Germany. See Advocacy Jernigan, Kenneth Lü K’un Movements: Germany Jiri, Jairos Luther, Martin Multiple Sclerosis Job Analysis and Placement Luxemburg, Rosa Murphy, Robert Francis Job Retention Muscular Dystrophy Job Training Mace, Ronald L. Music Johnson, Samuel Mackenzie, Clutha Music and Blindness Journalism Madness and Mental Distress Mutation Theory Judaism Mainstreaming Muwaffak ad-Din Muzaffar Jukes, The Managed Care Myasthenia Gravis Justice Martha’s Vineyard, Deafness in. Myofascial Pain See Deafness, on Martha’s Myopathy Kallikak, Deborah Vineyard Kanner, Leo Maternal Imagination Narcissistic Personality Disorder Katada ibn Di`ama as-Sadusi Maugham, W. Somerset National Action Plans in Katakori McDonald, Anne . See Norway: National Keller, Helen McMillan, Mary L. Action Plans Kenny, Sister Elizabeth Medical Futility National Center for Medical Kerlin, Isaac Newton Medical Model. See Models Rehabilitation Research Kessler, Henry Howard Medical Theater (United States) Khalil, Al- Medicine National Institute on Disability Khujjuttara Meditation. See Mindfulness and Rehabilitation Research Kirkbride, Thomas S. Meditation (NIDRR) (United States) xvi Encyclopedia of Disablility

National Theatre of the Deaf Panic Disorder Professions (United States) Paralympics Progressive Era Women in Paralysis Special Education NCMRR. See National Center for Parental Advocacy Prostheses. See Mobility Aids Medical Rehabilitation Parental Narratives Psychiatric Disorders Research (United States) Parenting Psychiatric Survivor Movement Nesbitt, Murrogh de Burgh Parkinson’s Disease Psychiatry Netherlands. See Experience of Participation Psychology Disability: The Netherlands Passing Psychosis Neural Engineering Patient-Professional Relationships Public Stripping Neurasthenia Patients’ Rights Public Transportation Neurological Impairments and Pedagogy and Curriculum Design Nervous Disorders Pediatric Rehabilitation Quality of Life Neuropathy Peer Support Quebec Model of Disability Neuropsychiatry People First® Creation Process Neuropsychology Perl, Otto Queer/Disability Studies Neurosis Personal Assistance and Direct Quota Hiring Policy New Zealand. See Experience of Payment Disability: New Zealand Personal Care Attendants Race and Ethnicity NIDRR. See National Institute on Phantom Limb Pain Race, Disability, and Special Disability and Rehabilitation Physical Activity Education Research (United States) Physical Medicine and Racial Hygiene (Rassenhygiene) Nietzsche, Friedrich Rehabilitation Racism Nirje, Bengt Physical Therapy Ramabai, Pandita Nonti Natakam (Tamil Physician-Assisted Suicide Rape Cripple Drama) Pinel, Philippe Rau, Fedor Andreevich Normality Poetry Rau, Fedor Fedorovich Normalization Polio Rau, Natalia Aleksandrovna Norse Sagas Political Economy Ray, Isaac Norway: National Action Plans Political Participation Recreation “Nothing about Us without Us” Politics of Disability: Refusal of Life-Sustaining Novel, The International Treatment Nursing Politics of Disability: Policies Rehabilitation Act of 1973 and Protest (United States) Obesity Poor Laws (United Kingdom) Rehabilitation Counseling Obsessive-Compulsive Disorder Pope, Alexander Rehabilitation Engineering Occupation Possession. See Diabolic Rehabilitation Engineering and Occupational Therapy Possession; Witchcraft Assistive Technology Society O’Connor, Flannery Postcolonialism of North America (RESNA) Ontarians with Disabilities Poster Child (United States) Act of 2001 (Canada) Posttraumatic Stress Disorder Rehabilitation Engineering Society Oppression Poverty of Japan (RESJA) Oralism Prematurity Rehabilitation Medicine, Orthopedics Prenatal Testing International Orthotics. See Mobility Aids Ulcer/Sore Rehabilitation Psychology Osteoporosis Prevention Rehabilitation Robots Outcome Measures Primary and Secondary Religion Education. See Education, Repetitive Strain Injuries Pain Primary and Secondary Representations of Disability, Palliative Care Privatization History of List of Entries———xvii

Representations of Disability, Slovak Republic. See Experience T4 Program Social of Disability: Slovak Republic Taiwan. See Experience of Reproductive Rights Social Capital Disability: Taiwan Research Social Models. See Models Telerehabilitation RESJA. See Rehabilitation Social Model: Sweden Telethons Engineering Society of Japan. Social Networks Television RESNA. See Rehabilitation Social Support Temporal Lobe Epilepsies. See Engineering and Assistive Social Work Epilepsies, Temporal Lobe Technology Society of North Socioeconomic Class tenBroek, Jacobus America. Sociology Teratology Rett Syndrome Socrates Thalab the Grammarian Right to Work Sokolov, Sergey I. Timur the Lame Risk and Risk Selection Related South Asian Archetypes Tokenism to Insurance Special Education Training Schools Roarty, John Joseph Special Olympics. See Transgression Roberts, Ed Classification in Paralympic Transitions in Education and Roosevelt, Franklin Delano Sport; Paralympics Employment Rousseau, Jean-Jacques Speech and Language Pathology Translating Theory and Research Rush, Benjamin Spinal Cord Injury into Practice Rusk, Howard Sports and Disability Traumatic Brain Injury Russell, Harold Standard Rules. See United Travel Nations Standard Rules Tredgold, Alfred F. Saint Vitus’ Dance Steiff, Margarete Tropical Diseases Sanger, Margaret Stereotyping. See Stigma Tuberculosis Saraswati, Virjananda Sterilization Tubman, Araminta Ross (Harriet) Saunderson, Nicholas Stevenson, Robert Louis Saveljev, Pavel Alekseevich Stigma “Ugly Laws” Schizoaffective Disorders Stigma, International Union of the Physically Impaired Schizophrenia Stress against Segregation (UPIAS) Scoliosis Stroke United Nations Scott and Disabled Peoples Sub-Saharan Africa. See United Nations Declaration on the International (Australia) v. Experience of Disability: Rights of Disabled Persons Telstra Sub-Saharan Africa United Nations Disability Seating and Positioning Substance Abuse Convention Séguin, Edouard Onesimus Substitute Decision Making United Nations Disability Self-Sufficiency Sugiyama, Wa'ichi Statistics Sequoyah Suicide United Nations Standard Rules Serbia. See Experience of Sullivan, Anne United Way of America Disability: Serbia Summary Measures of Population Universal Design. See Sex Industry, International Health Accessibility; Aids for Sex Therapy Supported Employment Activities of Daily Living; Sexual Access Supported Services Assistive Technology; Sexuality Sur Das Visitability Sheltered Employment Surgery and Disability Universalism Siblings of People with Sweden. See Disability Law: University and College Disabilities Sweden; Social Model: Sweden Education. See Education, Sick Role Switzer, Mary Elizabeth College and University Sign Language Sydney Paralympics UPIAS. See Union of the Sign Language Interpretation Syle, Edward W. Physically Impaired against Sign Poetry Syphilis Segregation (UPIAS) xviii Encyclopedia of Disablility

Urbanization Violence Wheelchair, History of Urinary Tract Infection in Visibility and Invisibility Wilhelm II, Emperor Spinal Cord-Disabled Visitability Willowbrook State School Patients Vocational Rehabilitation Witchcraft Vocational Rehabilitation: Law Women. See Family; Feminism; Vallathol and Policy Progressive Era Women in Values Vocational Rehabilitation Act Special Education van Gogh, Vincent (United States). See Woolf, Virginia Van Landeghem, Hyppolite Rehabilitation Act of 1973 Work Incentives Veeck, Bill (United States) Workers’ Cooperatives Vestibular Disorders Voting Worksite Modification Veterans Vygotsky, Lev Semyonovich World Bank Victor of Aveyron World Health Organization Vineyard Deafness. War Wulff, Hilde See Deafness, on Martha’s Wheelchair Vineyard Wheelchair, Electric Xenodisability READER’S GUIDE

The Reader’s Guide is provided to help readers locate entries and primary sources by topical category. It classifies the A–Z entries (Volumes I–IV) and primary source documents (Volume V) into twenty-five categories: Accessibi- lity, Arts, Biographies, Children and Infants, Deafness and Deaf Culture, Disability Studies, Economics and Employment, Education, Ethical Issues, Experience of Disability, Health and Medicine, Health Care, History of Disability, Information Technology, Language of Disability, Law and Social Policy, Models, Organizations, Politics, Rehabilitation, Rehabilitative Engineering and Assistive Technology, Religion, Science, Sports, and Therapies. Some entries and documents may appear in more than one category. Page numbers for primary source documents and illustrations can be found in the Table of Contents and List of Illustrations for Volume V, which appear in the front matter of each volume, and in the index.

ACCESSIBILITY Moscow Theater of Mime and Gesture Music Accessibility Music and Blindness Accessibility Codes and Standards National Theatre of the Deaf (United States) Accessible Internet Nonti Natakam (Tamil Cripple Drama) Air Carrier Access Novel, The Computer Software Accessibility Poetry Public Transportation Representations of Disability, History of Sexual Access Sign Poetry Visitability Television Worksite Modification Readings in Volume V ARTS Addison, Joseph, from The Spectator Anderson, Sherwood, from Winesburg, Ohio Aesthetics Barbauld, Anna Laeticia, from “An Inquiry into Art Therapy Those Types of Distress That Excite Agreeable Autobiography Sensations” Cartooning Bradstreet, Anne, “The Author to Her Book” Dance Brontë, Charlotte, from Jane Eyre Disability Arts Brooks, Gwendolyn, from A Street in Bronzeville Documentary Film Byron, Lord, from The Deformed Transformed Drama and Performance Clay, Sally, “People Who” Film Coleridge, Samuel Taylor, from “Dejection: An Ode” Kyo-gen Comedy Conrad, Joseph, from The Secret Agent Literature, Folly Crane, Stephen, from The Monster

xix xx Encyclopedia of Disablility

Davis, Rebecca Harding, from “Life in Pynchon, Thomas, from The Crying of Lot 49 the Iron Mills” Remarque, Erich Maria, from The Road Back Dickens, Charles, from A Christmas Carol Sandburg, Carl, “Cripple” Dickinson, Emily, “Much Madness Is Divinest Scott, Sarah, A Description of Millenium Hall Sense” Shakespeare, William, Richard III Dunn, Katherine, from Geek Love Shelley, Mary, from Frankenstein Eliot, T. S., from The Waste Land Sinclair, Upton, from The Jungle Elkin, Stanley, from The Magic Kingdom Sophocles, from “Philoctetes” Ervin, Mike, The History of Bowling Sophocles, Oedipus the King Faulkner, William, from The Sound and the Fury Spyri, Johanna, Heidi Ferris, Jim, “Poems with Disabilities” Steinbeck, John, from Of Mice and Men Freeman, Mary Wilkins, from “A Mistaken Charity” Stevenson, Robert Louis, from Treasure Island Gilman, Charlotte Perkins, from “The Yellow Twain, Mark, The Innocents Abroad: Or, The New Wallpaper” Pilgrim’s Progress Goethe, Johann Wolfgang von, from The Sorrows of Wade, Cheryl Marie, “I Am Not One of The” Young Werther Walker, Alice, from Meridian Hah Keun-Chan, “Ill-fated Father and Son” West, Nathanael, Miss Lonelyhearts Hawthorne, Nathaniel, from “The Birthmark” Whitman, Walt, from Collected Prose Hawthorne, Nathaniel, from The Scarlet Letter Whitman, Walt, from “The Wound-Dresser” Hemingway, Ernest, from “A Way You’ll Never Be” Wilde, Oscar, from “The Happy Prince” Hugo, Victor, from The Hunchback of Notre Dame Williams, William Carlos, “To Elsie” Hume, David, “Of the Standard of Taste” Wordsworth, William, from “The Idiot Boy” Images of Disability on Stamps Zeami, Semimaru Jacob, Violet, “Kirsty’s Opeenion” Johnson, Samuel, from “The Life of Pope” Kafka, Franz, from The Metamorphosis BIOGRAPHIES Kahlo, Frida Kang Kyong-Ae, from The Underground Village Abu 'l Ala Al-Ma`Arri Keats, John, “This Living Hand” Abu'l Aswad Ad-Duwali Kuusisto, Stephen, from “Harvest” Aesop Kye Yong Muk, from “Adada the Idiot” Agassiz, (Jean) Louis (Rodolphe) Lawrence, D. H., from Lady Chatterley’s Lover Aristotle Lee, Harper, To Kill a Mockingbird Arnold, Ivan Karlovich Lincoln, Abraham, “My Childhood’s Home `Ata ibn Abi Rabah I See Again” Augustine, Saint MacMurchy, Helen, from The Almosts: A Study of Austin, Mary Hunter the Feebleminded Ayres, A. Jean Mann, Thomas, from The Magic Mountain Baby Bollinger Melville, Herman, from Moby-Dick: or The Whale Bank-Mikkelsen, Niels Erik Miles, Josephine, Poems Barbellion, W. N. P Milton, John, from Paradise Lost Barker, Roger Garlock Montagu, Lady Mary Wortley, Poems Bashshar ibn Burd Morgan, Emma, “Attention Deficit Disorder” Beecher, Henry Knowles Morrison, Toni, from The Bluest Eye Beers, Clifford Whittingham Morrison, Toni, from Sula Bell, Alexander Graham Nietzsche, Friedrich, from Thus Spake Zarathustra Biesalski, Konrad Nussbaum, Susan, Parade Binet, Alfred Petry, Ann, The Street Bobath, Berta and Karel Poe, Edgar Allan, “Hop-Frog” Bourne, Randolph Powers, Richard, from Operation Wandering Soul Bourneville, Désiré Magloire Reader’s Guide xxi

Bowen, Robert Walter “Mike” Gallaudet, Edward Miner Braille, Louis Gallaudet, Thomas Hopkins Bridgman, Laura Dewey Galsworthy, John E. Brigham, Amariah Galton, Francis Broca, Paul Gennaro, Aldo Browning, Charles Albert “Tod” Georgens, Jan Daniel Buck (Eagle Detamore), Carrie Gesell, Arnold Buck, Pearl S. Gilman, Charlotte Perkins Bulwer, John Goddard, Henry Herbert Bunker, Chang and Eng Goethe, Johann Wolfgang von Byron, Lord (George Gordon) Gramsci, Antonio Campanella, Roy Guggenbühl, Johan Jacob Canguilhem, Georges Guttmann, Ludwig Carroll, Thomas J. Gutzlaff, Agnes Cartagena, Teresa de Hanawa, Hokiichi Christoph, Franz Hanselmann, Heinrich Cicero, Marcus Tullius Hathaway, Katharine Butler Claparède, Édouard Haüy, Valentin Claudius, Emperor Hay, William Confucius Heath, Jeff Counsell, John Hippocrates Crothers, Bronson Hoffman, C. Colden Cruickshanks, William Homer Dart, Justin Hunt, Paul Darwin, Charles Hussein, Taha De Labat, B. J. G. Ibn Al-Athir de l’Épée, Abbé Charles-Michel Ibn Sirin Deinhardt, Heinrich Marianus Ibn Umm Maktum Demosthenes Itard, Jean Marc Gaspard Desloges, Pierre Jackson, William Henry Dickens, Charles Jahiz, Al- (Abu Othman Amr bin Bahr) Diderot, Denis Jernigan, Kenneth Didymus the Blind Jiri, Jairos Dix, Dorothea Johnson, Samuel Dorris, Michael and Reynold Abel (“Adam”) Ko-to-, Kuzuhara du Pré, Jacqueline Kallikak, Deborah Dürer, Albrecht Kanner, Leo Dybwad, Gunnar Katada ibn Di`ama as-Sadusi Dybwad, Rosemary F. Keller, Helen Edison, Thomas Kenny, Sister Elizabeth Edward the Confessor Kerlin, Isaac Newton Elkin, Stanley Kessler, Henry Howard Enns, Henry Khalil, Al- Esquirol, Jean Etienne Dominique Khujjuttara Fernald, Walter Kirkbride, Thomas S. Fleury, Victor Knott, Margaret Foucault, Michel Kraepelin, Emil Freud, Sigmund Lagovsky, Nikolay Mikhailovich Fuller, Margaret Lange, Dorothea Galen Lavater, Johann Kaspar xxii Encyclopedia of Disablility

Leupolt, Jane Switzer, Mary Elizabeth Lewin, Kurt Syle, Edward W. Lichtenberg, Georg Christoph tenBroek, Jacobus Lohse-Wächtler, Elfriede Thalab the Grammarian Lü K'un, Timur the Lame Luther, Martin Tredgold, Arthur Luxemburg, Rosa Tubman, Harriet Mace, Ronald L. Vallathol Mackenzie, Clutha van Gogh, Vincent Maugham, W. Somerset Van Landeghem, Hyppolite McDonald, Anne Veeck, Bill McMillan, Mary L. Victor of Aveyron Michael IV, Emperor Vygotsky, Lev Semyonovich Mir Nasiruddin Harawi Wilhelm II, Emperor Montessori, Maria Woolf, Virginia Moon, William Wulff, Hilde Murphy, Robert Francis Muwaffak ad-Din Muzaffar Nesbitt, Murrogh de Burgh Readings in Volume V Nietzsche, Friedrich Barnum, Phineas Taylor (P. T.), from Nirje, Bengt The Life of P. T. Barnum O’Connor, Flannery Beers, Clifford Whittingham, from A Mind That Perl, Otto Found Itself Pinel, Philippe Boswell, James, from The Life of Pope, Alexander Samuel Johnson Ramabai, Pandita Comments on Lord Byron’s Medical Care Rau, Fedor Andreevich Dos Passos, John, on Randolph Bourne Rau, Fedor Fedorovich Gilman, Charlotte Perkins, from “The Yellow Rau, Natalia Aleksandrova Wallpaper” Ray, Isaac Hathaway, Katharine Butler, from The Little Roarty, John Joseph Locksmith Roberts, Ed Ibn Khallikan, Biographical Dictionary Roosevelt, Franklin Delano Johnson, Samuel, from “The Life of Pope” Rousseau, Jean-Jacques Keller, Helen, from The Story of My Life Rush, Benjamin Kuroyanagi, Tetsuko, from Totto-chan: The Little Rusk, Howard Girl at the Window Russell, Harold Nation, Carry A., from The Use and Need of the Life Sanger, Margaret of Carry A. Nation Saraswati, Virjananda Suetonius, Excerpts from the Lives Saunderson, Nicholas Yezierska, Anzia, Red Ribbon on a White Horse Saveljev, Pavel Alekseevich Séguin, Edouard Onesimus Sequoyah CHILDREN AND INFANTS Socrates Sokolov, Sergey I. Adoption and Foster Care Steiff, Margarete Changeling Stevenson, Robert Louis Child Abuse Sugiyama, Wa'ichi Child Care Sullivan, Anne Childhood, Youth, and Adolescence Sur Das Children of Disabled Parents Reader’s Guide xxiii

Children with Disabilities, Rights of Readings in Volume V Feral Children Al-Jahiz, The Book of Animals, IV Infant Stimulation Programs Baudier, Michel, on the Ottoman Empire Infanticide Bobovi’s Description of the Ottoman Court Maternal Imagination Bon, Ottaviano, Description of the Ottoman Court Parental Advocacy Busbecq on the Murder of Mustapha Parental Narratives Dallam, Thomas, Account of an Organ Carryed to Pediatric Rehabilitation the Grand Seignor Poster Child Deaf and Deaf-Mute Servants in the Sultan’s Court Prematurity Flournoy, John J., to William Turner, “A Mighty Change” Readings in Volume V “Position of the Students, Faculty and Staff of Dickens, Charles, from A Christmas Carol Gallaudet University” Dodd, William, from A Narrative of William Dodd: Rycaut, Sir Paul, from The History of the Present Factory Cripple State of the Ottoman Empire Goddard, Henry Herbert, “The Improvability of Sandys, George, from A Relation of a Journey . . . Feeble-Minded Children” Kelley, Florence, “Injurious Employments” Korean Child Welfare Committee, from DISABILITY STUDIES Handicapped Children’s Survey Report Kuroyanagi, Tetsuko, Totto-chan: The Little Alienation Girl at the Window Anthropology Meltzer, Ewald, Survey to German Parents of 162 Attitudes Disabled Children Body, Theories of Nation, Carry A., from The Use and Need Canadian Centre on Disability Studies of the Life of Carry A. Nation Cultural Context of Disability Smart, Isabelle Thompson, from Studies in the Disability Studies Relation of Physical Inability and Mental Disability Studies: Australia Deficiency to the Body Social Disability Surveys Spyri, Johanna, Heidi Epidemiology Story of Enkidu (Wolf Child) Explanatory Legitimacy Theory Feminism Humanities DEAFNESS AND DEAF CULTURE Pedagogy and Curriculum Design Queer/Disability Studies Audism Research Deaf, History of the Sociology Deaf Culture Translating Theory and Research into Practice Deaf People at the Ottoman Court Deaf People in African Histories Deafblindedness Readings in Volume V Deafness, Milan Congress of 1880 on The Hunter College Disability Studies Project, Deafness, on Martha’s Vineyard “Definition of Disability Studies” Hearing Impairment Moscow Theater of Mime and Gesture National Theatre of the Deaf (United States) ECONOMICS AND EMPLOYMENT Oralism Sign Language Advertising Sign Language Interpretation Affirmative Businesses Sign Poetry Begging xxiv Encyclopedia of Disablility

Consumer-Run Businesses German Training Schools (Hilfsschulen) Disability and Career Development Inclusive Education Economic Analysis of Disability Individualized Education Program (IEP) Economic and Social Development Individuals with Disabilities Education Act of 1990 Economic and Social Development, International (United States) Economic Decision Making by the Disabled Mainstreaming Employability Pedagogy and Curriculum Design Employment Progressive Era Women in Special Education Employment, International Race, Disability, and Special Education Financial Costs of Disability Special Education Global Inequities Training Schools Globalization Transitions in Education and Employment Industrialization Willowbrook State School Job Analysis and Placement Job Retention Readings in Volume V Job Training Political Economy Abt, Henry Edward, from The Care, Cure, and Poverty Education of the Crippled Child Privatization The Beginning of Korean Special Education Quota Hiring Policy Fitts, Ada M., “Classes and Institutions” Right to Work Goddard, Henry Herbert, “The Improvability of Risk and Risk Selection Related to Insurance Feeble-Minded Children” Sheltered Employment Hall, Sherwood, from With Stethoscope in Asia: Socioeconomic Class Korea Supported Employment Japanese Schools for the Physically and Mentally Transitions in Education and Employment Handicapped Work Incentives Kuroyanagi, Tetsuko, Totto-chan: The Little Girl at Workers’ Cooperatives the Window Montessori, Maria, on the Orthophrenic School “Where Work of Salvaging Human Beings Goes Readings in Volume V Forward” Davis, Rebecca Harding, from “Life in the Iron Mills” ETHICAL ISSUES Dodd, William, from A Narrative of William Dodd: Factory Cripple Bioethics Edward III, Ordinance of Labourers Competence Kelley, Florence, “Injurious Employments” Consent to Treatment Marx, Karl, from Capital Cosmologies of Morality and Origin The Satire of the Trades Do Not Resuscitate (DNR) Orders Sinclair, Upton, from The Jungle End-of-Life Care Ethics Euthanasia EDUCATION Genetics and Disabilities: Social and Ethical Dilemmas Early Childhood Intervention Medical Futility Education, College and University Physician-Assisted Suicide Education, International Prenatal Testing Education, Primary and Secondary Refusal of Life-Sustaining Treatment Education and Disability Reproductive Rights Educational Assistive Technology Sterilization Reader’s Guide xxv

Substitute Decision Making Latino Health Values Leadership Oppression Parenting Readings in Volume V Participation Not Dead Yet Passing Nussbaum, Susan, Parade Peer Support Talbot, Margaret, “The Executioner’s I.Q. Test” Personal Assistance and Direct Payment Personal Care Attendants Public Stripping EXPERIENCE OF DISABILITY Quality of Life Race and Ethnicity Ableism Racism Accidents Rape Activities of Daily Living (ADLs) Recreation Aging Representations of Disability, Social Aging, International Self-Sufficiency Capacity Building Sex Industry, International Chronically Sick and Disabled Persons Act of 1970 Sexuality (United Kingdom) Siblings of People with Disabilities Communication Sick Role Community Living and Group Homes Social Networks Consumer Control Social Support Consumer Satisfaction Stigma Decision Making Stigma, International Deformity Stress Developing World Suicide Disability Culture Supported Services Disability in Contemporary Africa Telethons Disability Management Tokenism Disability Pride Transgression Disabled Veterans Travel Empowerment and Emancipation Universalism Experience Violence Family Visibility and Invisibility Family, International Xenodisability Gender Gender, International Geography and Disability Experience in Specific Countries Hand and Arm Manipulation Disability in Contemporary Australia Home Support Disability in Contemporary China Identity Disability in Contemporary India Inclusion and Exclusion Experience of Disability: Brazil Independent Living Experience of Disability: China Inspiration Experience of Disability: Colombia Institutionalization and Segregation Experience of Disability: Costa Rica Invalid Women Experience of Disability: India IQ Experience of Disability: Ireland Isolation Experience of Disability: Japan Journalism Experience of Disability: New Zealand xxvi Encyclopedia of Disablility

Experience of Disability: Serbia Hypochondria Experience of Disability: Slovak Republic Hysteria Experience of Disability: Sub-Saharan Africa Learning Disability Experience of Disability: Taiwan Madness and Mental Distress Experience of Disability: The Netherlands Mental Health India, Impact of Gender in Mental Illness India, Marriage and Disabled Women in Mental Retardation, History of Narcissistic Personality Disorder Neurosis Readings in Volume V Obsessive-Compulsive Disorder Beers, Clifford Whittingham, from A Mind That Panic Disorder Found Itself Posttraumatic Stress Disorder Bourne, Randolph, “The Handicapped” Psychiatric Disorders Brown, Steven, Institute on Disability Culture Psychosis Manifesto Rett Syndrome Cliff, Michelle, “If I Could Write This in Fire, I Schizoaffective Disorders Would Write This in Fire” Schizophrenia Dryden, John, from the Preface to Fables, Ancient Substance Abuse and Modern Dworkin, Andrea, “Through the Pain Barrier” Gliedman, John, and William Roth, Readings in Volume V from “The Grand Illusion” Freud, Sigmund, from “On Narcissism: An Lorde, Audre, “A Burst of Light: Living Introduction” with Cancer” Freud, Sigmund, from Some Character-Types Met “March’s Ears” with in Psycho-Analytic Work Montagu, Lady Mary Wortley, Poems Howe, Samuel Gridley, “Report Made to the “The Story of the Barber’s Sixth Brother,” from Legislature of Massachusetts upon Idiocy” Arabian Nights Lincoln, Abraham, “My Childhood’s Waller, Thomas “Fats,” Harry Brooks, and Andy Home I See Again” Razaf, “What Did I Do To Be So Black and Rush, Benjamin, from Two Essays Blue?” on the Mind Woolf, Virginia, from On Being Ill Yezierska, Anzia, Red Ribbon on a White Horse Conditions, Physical Acute and Chronic Conditions HEALTH AND MEDICINE Alzheimer’s Disease Amputation Conditions, Mental Aphasia Agoraphobia Apraxia Amor Hereos (Lovesickness) Arthritis and Cartilage Diseases and Injuries Antisocial Personality Disorder Asperger Syndrome Anxiety Disorders Asthma Behavioral Disorders Autism Bipolar Disorder Bell’s Palsy Borderline Personality Disorder Bladder Control Depression Blindness and Visual Impairment Developmental Disabilities Bowel Control Dissociative Disorders Breast Cancer Dyslexia Burns Eating Disorders Cancer Reader’s Guide xxvii

Cardiac Conditions Polio Cerebellar Ataxia Pressure Ulcer/Sore Cerebral Palsy Repetitive Strain Injuries Comorbidity Saint Vitus’ Dance Cretinism Scoliosis Cystic Fibrosis Speech and Language Pathology Delirium Spinal Cord Injury Dementia Stroke Developmental Disabilities Syphilis Diabetes Traumatic Brain Injury Disease Tropical Diseases Down Syndrome Tuberculosis Dwarfism Urinary Tract Infection in Spinal Cord-Disabled Dysarthia Patients Dyslexia Vestibular Disorders Dysphagia Emerging Disabilities Epilepsies, Temporal Lobe Readings in Volume V Epilepsy Aretaeus of Cappodocia, “The Wandering Womb” Fetal Alcohol Syndrome Bernard de Gordon, Lilium Medicinae Fibromyalgia Bérubé, Michael, from Life as We Know It: A Father, Frailty a Family, and an Exceptional Child Gastrointestinal Disabilities Galen, “Psychological Origins of Hysteria” Guillain-Barré-Strohl Syndrome Hip Fracture HIV/AIDS HEALTH CARE Hypertension Immunologic Diseases Accountability Inborn Errors of Metabolism Acupuncture Infectious Diseases Aesthetic Surgery Infertility Black Report Intersex Caregiving Katakori Case Management Laryngectomy Chiropractic Care Leprosy Complementary and Alternative Medicine Multiple Sclerosis Death Muscular Dystrophy Disparity Myasthenia Gravis E-Health Care/Telemedicine Myofascial Pain End-of-Life Care Myopathy Evidence-Based Medicine Neurasthenia Genetic Counseling Neurological Impairments and Health Nervous Disorders Health Care and Disability Neuropathy Health Care Systems Obesity Health Management Systems Osteoporosis Health Promotion Pain Health Resource Rationing Paralysis Healthy People 2010 Parkinson’s Disease Interdisciplinary Team Phantom Limb Pain Managed Care xxviii Encyclopedia of Disablility

Medical Futility Jukes, The Medical Theater L’Arche Medicine Maternal Imagination Mental Health Parity Melancholy Nursing Modernity Palliative Care Monsters Patient-Professional Relationships Nazism Patients’ Rights. Norse Sagas Prenatal Testing Poor Laws (United Kingdom) Prevention Racial Hygiene (Rassenhygiene) Professions Representations of Disability, History of Social Capital South Asian Archetypes Summary Measures of Population Health T4 Program Surgery and Disability Teratology Urbanization Veterans Readings in Volume V War Caraka Samhita Witchcraft Hippocrates Soranus, Gynecology Readings in Volume V Al-Mas'udi HISTORY OF DISABILITY Analects of Confucius Apology on the 75th Anniversary of the Buck v. Bell Amputees at Persepolis Decision Archaeology Bacon, Francis, from Essayes or Counsels Blind, History of the Barnum, Phineas Taylor (P. T.), from The Life of P. T. Changeling Barnum Christoffel-Blindenmission Barr, Martin, “Some Notes on Asexualization” Chuas of Shah Daulah, The Binding, Karl, and Alfred Hoche, from Permission Confinement for the Destruction of Worthless Life, Its Extent Degeneration and Form Eugenics Blount, Henry, from A Voyage into the Levant Eugenics: Germany Ciqneqs Myth Exhibition Columbus, Christopher, from a Letter to Ferdinand Feeblemindedness and Isabella Folk Belief Dallam, Thomas, Account of an Organ Carryed to Fools the Grand Seignor Freak Show Davenport, Charles B., “Marriage Laws and Genocide Customs” History of Disability: Ancient West Descriptions of King James I of England History of Disability: Early Modern West Diodorus of Sicily, Book XVII.69 History of Disability: Korea Du Bois, W. E. B., from “The Talented Tenth” History of Disability: Medical Care in Du Bois, W. E. B., “Race Intelligence” Renaissance Europe Ee-ee-toy’s Song: When He Made the World History of Disability: Medieval West Serpents History of Disability: Pleistocene Period Erasmus of Rotterdam, The Praise of Folly Humors, Theory of Evliya Efendi, Narrative of Travels in Industrialization Europe, Asia, and Africa Reader’s Guide xxix

Fiedler, Leslie, from Freaks, Myths and Plutarch, “Cicero” Images of the Secret Self Proverbs from Ki-en-gir (Sumer) “Fire from Heaven!” A Story of the Wagogo Public Speech by the Bishop of Munster Forbes, James, The Blind Diver of Dhuboy Qöyáwaima (Oraíbi) Galton, Francis, from Hereditary Genius Rousseau, Jean-Jacques, from Reveries Georgijevic, Bartolomej, on the Murder of of the Solitary Walker Mustapha Rycaut, Sir Paul, from The History of the Present Gilman, Charlotte Perkins, from Women and State of the Ottoman Empire Economics Sanderson, John, Travels in Constantinople Herodotus Seneca, Excerpt from Apocolocyntosis Homer, on Hephaestus “Sim Chung Jeon” (“The Dutiful Daughter”) Homer, The Iliad Smart, Isabelle Thompson, from Studies in the Hume, David, “Of National Characters” Relation of Physical Inability and Mental International Commemoration Committee on Deficiency to the Body Social Eugenic Mass Murder Snorri Sturluson, Saga of Harald Hardrade Isaacson, Nicholas O., “The Tie That Binds” Stories from Ebisu Mandara Jones, Lizzie, Letter Home from the Orthopaedic Story of Enkidu (Wolf Child) Institution for the Cure of Deformities Suetonius, Excerpts from the Lives Julius Caesar, Civil Wars Tacitus, Excerpts from the Annals Juvenal, Excerpts from Satire 2 Talbot, D. Amaury, Women’s Mysteries of a Kai Kaus, Qabus-nama Primitive People: The Ibibios of Southern Nigeria Kant, Immanuel, from Observations on the Feeling Tiresias of the Beautiful and the Sublime “Tomi” from Samguk Sagi Kellogg, John H., from Plain Facts Tournefort, Joseph Pitton de, from A Voyage Knolles, Richard, from The Turkish History into the Levant The Kojiki Wentz, W. Y. Evans, on Changelings and Fairy Faith “The Legend of Knockgrafton” Williams, William Carlos, from Paterson Legend of Saint Wilgefortis Witch Trial of Jane Hawkins The Legend of the Pyramid of the Dwarf Woodhull, Victoria, on Women’s Suffrage Linderman, Frank B., from Indian Why Stories Woodhull, Victoria, “Tried as by Fire” Livy, Excerpts from The History of Rome Wragg, Richard, on the Ottoman Court Lombroso, Cesare, and William Ferrero, from The Female Offender Los Angeles Times on Eugenics Apologies INFORMATION TECHNOLOGY Lybyer, Albert Howe, on the Sultan Suleiman The Mahabharata Accessible Internet Martial, Epigrams Computer Software Accessibility Martineau, Harriet, from Society in America Computer Technology Mather, Cotton, “The Wonders of the Invisible World” Cyborg Meltzer, Ewald, Survey to German Parents of 162 Information Technology Disabled Children Montaigne, Michel de, from Essays National Socialist Propaganda, Volk und Rasse LANGUAGE OF DISABILITY Nordau, Max, Degeneration O Hwa-Su, “The Bride Who Would Not Speak” Cripple The Omen Series Summa Izbu Handicap Paré, Ambroise, from Monsters and Marvels Impairment “Phrenology of Tom Thumb” International Classification of Functioning, Pliny the Elder, Excerpts from Natural History Disability, and Health (ICF/ICIDH) xxx Encyclopedia of Disablility

Lame, The Justice Language of Disability Mental Health: Law and Policy Normality Normalization Norway: National Action Plans Ontarians with Disabilities Act of 2001 (Canada) Readings in Volume V Patients’ Rights Disability Media Action and Awareness Project, Physician-Assisted Suicide “‘Do You Mean to Say What We Hear?’ Poor Laws (United Kingdom) A Disability Language Reference” Public Transportation Rehabilitation Act of 1973 (United States) Reproductive Rights LAW AND SOCIAL POLICY Scott and Disabled Peoples International (Australia) v. Telstra Abuse and Hate Crimes Sterilization Accessibility Codes and Standards Substitute Decision Making Americans with Disabilities Act of 1990 “Ugly Laws” (United States) United Nations Declaration on the Rights of Antidiscrimination Law: Judicial Interpretations Disabled Persons Citizenship and Civil Rights United Nations Disability Convention Civil Rights Backlash United Nations Disability Statistics Communication: Law and Policy United Nations Standard Rules Competence Vocational Rehabilitation: Law and Policy Contracting Out Services Council of Europe Disability Policy Crime and Delinquency Readings in Volume V Death Penalty Americans with Disabilities Act of 1990 Deinstitutionalization (United States) Disability Assessment/Evaluation, Europe Australian Disability Advocacy Disability Discrimination Act of 1995 Begging Laws (United Kingdom) Charter of Fundamental Rights of the European Union Disability Law: Canada Council Decision of 3 December 2001 on the Disability Law: Europe European Year of People with Disabilities 2003 Disability Law: Germany Developmental Disabilities Assistance and Bill of Disability Law: Sweden Rights Act of 2000 (United States) Disability Law: United States Disability Discrimination Act of 1992 (Australia) Disability Leave English Poor Law Amendment Disability Policy: India European Union Disability Policy Disability Policy: United States Hammurabi’s Code of Laws Disabled Persons’ Fundamental Law of 1993 (Japan) Hindu Testimony Acts Economic and Social Development Holmes, Oliver Wendell, Buck v. Bell Economic and Social Development, International Justinian, Institutes European Commission Policy Korean Child Welfare Committee, from Euthanasia Handicapped Children’s Survey Report Fair Housing Act Amendments of 1988 Law on the Protection of Disabled Persons (United States) of 1990 (China) Family: Law and Policy The Laws of Eshunna Housing: Law and Policy Lysias 24, “On the Refusal of a Pension” Human Rights Act of 1998 (United Kingdom) Plato, Republic Immigration: Law and Policy Rehabilitation Act of 1973 (United States) Individuals with Disabilities Education Act of 1990 Social Security Act of 1967, Section 223 (d)(3) (United States) (United States) Reader’s Guide xxxi

Social Security Report on Disability Insurance League of the Physically Handicapped Talbot, Margaret, “The Executioner’s I.Q. Test” National Empowerment Center’s Mission Statement Wilhelm II, Emperor of Germany, Speech before Not Dead Yet Parliament Self-Advocacy in Australia Union of the Physically Impaired against Segregation, from Aims MODELS World Federation of Psychiatric Users, Minutes of the First Committee Meeting Models Quebec Model of Disability Creation Process Social Model: Sweden POLITICS

Ableism ORGANIZATIONS Activism Advocacy ADAPT Advocacy, International Association for the Advancement of Assistive Advocacy Movements: France Technology in Europe (AAATE) Advocacy Movements: Germany Australian Rehabilitation Assistive Technology Democracy Association (ARATA) Diversity Disability Rights Education and Defense Fund Empowerment and Emancipation Disabled Peoples’ International Lobbying Easter Seals “Nothing about Us without Us” European Disability Forum Political Economy Handicap International Political Participation International Disability Organizations Politics of Disability: International League of the Physically Handicapped Politics of Disability: Policies and Protest Leonard Cheshire Postcolonialism Liliane Foundation Psychiatric Survivor Movement National Center for Medical Rehabilitation Research Voting (United States) National Institute on Disability and Rehabilitation Research (NIDRR) (United States) Readings in Volume V People First Aristotle, Politics Rehabilitation Engineering and Assistive Technology Self-Advocacy in Australia Society of North America (RESNA) Rehabilitation Engineering Society of Japan (RESJA) REHABILITATION Union of the Physically Impaired against Segregation (UPIAS) Community-Based Rehabilitation United Nations Functional Assessment United Way of America Functional Measurement World Bank Gait Analysis World Health Organization Hydrotherapy Interdisciplinary Team Modalities Readings in Volume V Model of Human Occupation Brown, Robert, and Hope Schutte, from Our Fight: Occupation A Battle Against Darkness Occupational Therapy Disabled Students Union Meeting Outcome Measures German Movement of Mentally Disabled People Pediatric Rehabilitation xxxii Encyclopedia of Disablility

Physical Medicine and Rehabilitation RELIGION Physical Therapy Rehabilitation Counseling Charity Rehabilitation Medicine, International Cosmologies of Morality and Origin Rehabilitation Psychology Diabolic Possession Vocational Rehabilitation Judaism Vocational Rehabilitation: Law and Policy Middle East and the Rise of Islam Miracles Religion Readings in Volume V

Biesalski, Konrad, from Manual for the Readings in Volume V Care of Cripples McMurtrie, Douglas C., from The Disabled Soldier Anselm of Canterbury, Proslogion Miller, Alice Duer, “How Can a Woman Babylonian Theodicy Best Help?” Bartimaeus: A Blind Beggar Receives His Sight Nesbitt, Murrogh de Burgh, from The Road to “The Binding of the Wolf” Avalon The Birth of John the Baptist Office of the Surgeon General, “War Cripple Axioms Blinding Power and Fundamentals” The Book of Margery Kempe Samuels, Arthur H., on Disabled Veterans Büttner, Wolfgang, on the Fool Claus Narr Stromer, Walt, on the Functional Brutality of The Centurion’s Faith in the Suffering Servant Military Medicine David’s Curse Two Cripples, “The Sluggard and the Ant” “The Death of Balder” Disability for the Sake of the Kingdom The Disciples Heal at the Temple REHABILITATIVE ENGINEERING Followers in the Power of Christ AND ASSISTIVE TECHNOLOGY God’s Promise to Israel The Healing at the Pool of Bethesda Accessible Internet Invitation to a Wedding Feast Aids for Activities of Daily Living Isaac’s Blindness: Jacob Takes the Blessing Assistive Technology Jacob’s Limp Audio Description Jataka Tales: “The Tricky Wolf and the Rats” Augmentative Communication Jesus and John the Baptist Biomechanics Jesus and the Demoniac Computer Software Accessibility Jesus Heals a Man Born Blind Computer Technology Jesus Heals a Man’s Hand Educational Assistive Technology Jesus Heals a Paralytic Environmental Control Ludlul Bêl Nimeqi (Sumerian Wisdom Text: Facilitated Communication Man and His God) Home Modification Malory, Thomas, The Book of King Mobility Aids Arthur and His Noble Knights of the Neural Engineering Round Table Rehabilitation Engineering Mephibosheh: The Prince with a Disability Rehabilitation Robots Nabonidus and His God Seating and Positioning The People Praise God for Healing Telerehabilitation Purity Laws Wheelchair Saint Augustine, The City of God Wheelchair, Electric Saint Francis of Assisi Wheelchair, History of Saint Lidwina of Schiedam Reader’s Guide xxxiii

The Son of David Early Childhood Intervention Taoist Scripture: Chuang-Tzu Exercise and Physical Activity Tobit’s Blindness Gene Therapy The Uruk Incantation Group Therapy Westminster Larger Catechism Mindfulness Meditation The Zend-Avesta Neuropsychiatry Neuropsychology Orthopedics SCIENCE Physical Activity Physical Therapy Biological Determinism Psychiatry Evolutionary Theory Psychology Genetics Rehabilitation Psychology Molecular, Cellular, and Tissue Engineering Sex Therapy Mutation Theory Social Work

Readings in Volume V Readings in Volume V Darwin, Charles, from The Descent of Man Chamberlin, Judi, from “Confessions of a Spencer, Herbert, Social Statics or Order Noncompliant Patient” Chamberlin, Judi, from On Our Own: Patient- SPORTS Controlled Alternatives to the Mental Health System Classification in Paralympic Sport Dendron News Doping in Paralympic Sport Fernald, Walter, from The History of the Paralympics Treatment of the Feeble-Minded Sports and Disability Foucault, Michel, from The Birth of the Clinic Sydney Paralympics Goffman, Erving, from Asylums: Essays on the Social Situation of Mental Patients and Other THERAPIES Inmates Laing, R. D., from The Politics of Experience Antipsychiatry Movement “N-P”: The Case of Neuropsychiatric Disability Art Therapy Séguin, Edouard Onesimus, Idiocy: And Its Aversive Therapies Treatment by the Physiological Method Behavior Therapy Szasz, Thomas, from The Myth of Mental Illness Clever Hans Zinman, Sally, Howie T. Harp, and Su Budd, from Complementary and Alternative Medicine Reaching Across: Mental Health Clients Helping Discredited Therapies Each Other Volume V Contents xxxv V )5 BCE OLUME ) (ca. 1700 V )14 BCE )23 BCE Man and His God )6 )3 )4 )10 )30 BCE BCE )3 BCE The Ancient World BCE BCE BCE )10 )5 )8 BCE BCE )22 (ca. 1300 )14 BCE )15 OURCES IN BCE )8 BCE BCE Part One: Origins of Disability Part (2025–1700 BCE S (Sumerian Wisdom Text: (Sumerian Wisdom (3rd c. )28 (6th c. (400–200 CE (712 RIMARY The Uruk Incantation (ca. 3rd c. Ludlul Bêl Nimeqi Story of Enkidu (Wolf Child) (2nd c. Story of Enkidu (Wolf Hammurabi’s Code of Laws (ca. 1780 Code of Laws Hammurabi’s The Babylonian Theodicy (ca. 2000 Theodicy The Babylonian “Fire from Heaven!”Wagogo A Story of the 33 The Laws of Eshunna (ca. 1770 The Laws The Kojiki Nabonidus and His God (539 The Zend-Avesta Taoist Scripture:Taoist Chuang-Tzu (ca. 4th to 2nd c. The Mahabharata The Mahabharata Trades of the The Satire Analects of Confucius (500 Caraka Samhita Caraka Proverbs from Ki-en-gir (Sumer) (2000 Proverbs Jataka Tales:Jataka and the Rats”Wolf Tricky “The (3rd c. The Omen Series Summa Izbu The Omen Series Summa Izbu The Ancient World: Africa The Ancient World: The Ancient World: East Asia The Ancient World: The Ancient World: South Asia The Ancient World: Sumeria/Mesopotamia P xxxvi Encyclopedia of Disablility

The Ancient World: Pre-Columbian Americas

The Legend of the Pyramid of the Dwarf (569–1000 CE)35 Ee-ee-toy’s Song: When He Made the World Serpents 36 Contents

Volume V Volume Ciqneqs Myth 37 Qöyáwaima (Oraíbi) 37

The Ancient World: Norse Culture

“The Death of Balder” (ca. 1250 CE)40 “The Binding of the Wolf” (ca. 1250 CE)41

The Ancient World: Classical Greece Tiresias 44 Homer, The Iliad (800 BCE)44 Homer on Hephaistos (800 BCE)47 Plato, Republic (380–370 BCE)48 Aristotle, Politics (350 BCE)50 Lysias 24, “On the Refusal of a Pension” (ca. 404 BCE)52 Herodotus (ca. 440 BCE)54 Hippocrates (ca. 400 BCE)55 Sophocles, from “Philoctetes” (409 BCE)58 Sophocles, Oedipus the King (421 BCE)59 Diodorus of Sicily, Book XVII.69 (50 BCE)64

The Ancient World: Rome

Julius Caesar, Civil Wars (50–47 BCE)65 Plutarch, “Cicero” (2nd c. CE)65 Juvenal, Excerpts from Satire 2 (118 CE)66 Martial, Epigrams 12.93; 14.210, 212, 213 (1st c. CE)67 Seneca, Excerpt from Apocolocyntosis (54 CE)67 Livy, Excerpts from The History of Rome (1st c. BCE)74 Pliny the Elder, Excerpts from Natural History (23–79 CE)75 Tacitus, Excerpts from the Annals (109 CE)77 Suetonius, Excerpts from the Lives (110 CE)78 Aretaeus of Cappadocia, “The Wandering Womb” (2nd c. CE)80 Soranus, Gynecology (2nd c. CE)81 Galen, “Psychological Origins of Hysteria” (2nd c. CE)82 Justinian, Institutes (535 CE)83 Contents of Volume V xxxvii Volume V

The Bible Contents

Hebrew Bible: The Old Testament Isaac’s Blindness: Jacob Takes the Blessing 84 Jacob’s Limp 85 Purity Laws 86 Mephibosheh: The Prince with a Disability 91 David’s Curse 92 God’s Promise to Israel 92

Apocrypha Tobit’s Blindness 94

New Testament: Christian Scriptures The Birth of John the Baptist 95 The Centurion’s Faith in the Suffering Servant 96 Jesus and the Demoniac 98 Jesus Heals a Man’s Hand 98 The People Praise God for Healing 99 The Son of David 99 Disability for the Sake of the Kingdom 100 Invitation to a Wedding Feast 101 Jesus Heals a Paralytic 101 Bartimaeus: A Blind Beggar Receives His Sight 104 Jesus Heals a Man Born Blind 105 The Healing at the Pool of Bethesda 107 Jesus and John the Baptist 108 The Disciples Heal at the Temple 108 Followers in the Power of Christ 109 Blinding Power 109

Middle Ages

Saint Augustine, The City of God (ca. 410 CE) 113 Al-Jahiz, The Book of Animals, IV, 404–405 (776–868 CE) 116 Al-Mas'udi (ca. 896–956 CE) 117 Anselm of Canterbury, Proslogion (ca. 1070–1100) 118 Kai Kaus, Qabus-nama (1082–1083 CE) 122 Ibn Khallikan, Biographical Dictionary 123 xxxviii Encyclopedia of Disablility

Legend of Saint Wilgefortis (1100s–1400s) 124 “Tomi” from Samguk Sagi (1145) 126 Snorri Sturluson, Saga of Harald Hardrade (1179–1241) 126 Saint Francis of Assis(1181–1226) 127 Contents Volume V Volume Zeami, Semimaru (ca. 1300s) 130 Bernard de Gordon, from Lilium Medicinae (1307) 134 Edward III, Ordinance of Labourers (1349) 135 Saint Lidwina of Schiedam (1380–1433) 136 The Book of Margery Kempe, Chapter 74 (ca. 1430) 137 Sir Thomas Malory, The Book of King Arthur and His Noble Knights of the Round Table (ca. 1470) 139 Christopher Columbus, from a Letter to Ferdinand and Isabella (1493) 139 Erasmus of Rotterdam, The Praise of Folly (1511) 140

Part Two: Modernity and Normalization 1500–1800

Busbecq on the Murder of Mustapha (1553) 147 Albert Howe Lybyer on the Sultan Suleiman (1913) 148 Bartolomej Georgijevic on the Murder of Mustapha (1569) 149 Descriptions of King James I of England (1566–1625) 149 Ambroise Paré, from Monsters and Marvels (1575) 150 Michel de Montaigne, from Essays (1575) 150 William Shakespeare, from Richard III (ca. 1591–1594) 157 Richard Wragg on the Ottoman Court (1590s) 158 John Sanderson’s Travels in Constantinople (Late 16th c.) 159 Thomas Dallam, Account of an Organ Carryed to the Grand Seignor (1599) 159 Stories from the Ebisu Mandara (1998) 160 Wolfgang Büttner on the Fool Claus Narr (1572) 168 Richard Knolles, from The Turkish History (1603) 168 Ottaviano Bon’s Description of the Ottoman Court (1607) 170 George Sandys, from A Relation of a Journey . . . (1615) 171 Michel Baudier on the Ottoman Empire (1624) 171 Francis Bacon, from Essayes or Counsels (1625) 172 Witch Trial of Jane Hawkins (1638–1641) 173 Evliya Efendi, from Narrative of Travels in Europe, Asia, and Africa (1635) 173 Henry Blount, from A Voyage into the Levant (1636) 174 John Milton, from Paradise Lost (1674) 174 Anne Bradstreet, “The Author to Her Book” (1678) 176 Sir Paul Rycaut, from The History of the Present State of the Ottoman Empire (1686) 176 Contents of Volume V xxxix

Bobovi’s Description of the Ottoman Court (1686) 177 Volume V Contents Cotton Mather, from “The Wonders of the Invisible World” (1693) 178 Begging Laws (1697) 179 John Dryden, from the Preface to Fables, Ancient and Modern (1700) 179 “March’s Ears” (1700) 179 “The Story of the Barber’s Sixth Brother” from Arabian Nights (1898) 181 Joseph Addison, from The Spectator (1711) 182 Lady Mary Wortley Montagu, Poems (18th c.) 185 Joseph Pitton de Tournefort, from A Voyage into the Levant (1717) 188 David Hume, “Of National Characters” (1748) 189 David Hume, “Of the Standard of Taste” (1757) 189 Sarah Scott, from A Description of Millenium Hall (1762) 190 Immanuel Kant, from Observations on the Feeling of the Beautiful and the Sublime (1764) 200 Anna Laetitia Barbauld (1743–1825), from “An Inquiry into Those Types of Distress That Excite Agreeable Sensations” 201 Johann Wolfgang von Goethe, from The Sorrows of Young Werther (1774) 202 Jean-Jacques Rousseau, from Reveries of the Solitary Walker (1778) 204 James Forbes, The Blind Diver of Dhuboy (1781) 204 Samuel Johnson, from “The Life of Pope” (1781) 205 Benjamin Rush, from Two Essays on the Mind (1786) 205 James Boswell, from The Life of Samuel Johnson (1791) 207 William Wordsworth, from “The Idiot Boy” (1798) 208

1800–1945

Samuel Taylor Coleridge, from “Dejection: An Ode” (1802) 211 John Keats, “This Living Hand” (1816) 211 Mary Shelley, from Frankenstein (1818) 211 George Gordon, Lord Byron, from The Deformed Transformed (1822) 216 Victor Hugo, from The Hunchback of Notre Dame (1831) 223 Comments on Lord Byron’s Medical Care (19th c.) 225 Harriet Martineau, from Society in America (1837) 226 English Poor Law Amendment (1841) 229 William Dodd, from A Narrative of William Dodd: Factory Cripple (1841) 230 Charles Dickens, from A Christmas Carol (1843) 231 Nathaniel Hawthorne, from “The Birthmark” (1846) 233 Abraham Lincoln, “My Childhood’s Home I See Again” (1846) 234 “Phrenology of Tom Thumb” (1846) 236 Charlotte Brontë, from Jane Eyre (1847) 237 Samuel Gridley Howe, “Report Made to the Legislature of Massachusetts upon Idiocy” (1848) 240 Nathaniel Hawthorne, from The Scarlet Letter (1850) 242 Edgar Allan Poe, “Hop-Frog” (1850) 243 xl Encyclopedia of Disablility

Herman Melville, from Moby Dick: or The Whale (1851) 248 Herbert Spencer, from Social Statics or Order (1851) 250 Phineas T. Barnum, from The Life of P. T. Barnum (1855) 253 Lizzie Jones’s Letter Home from the Orthopaedic Institution for the Cure of Deformities (1855) 254 Contents Volume V Volume John J. Flournoy to William Turner, “A Mighty Change” (1856) 255 Rebecca Davis, from “Life in the Iron Mills” (1861) 259 Edouard Seguin, Idiocy: And Its Treatment by the Physiological Method (1866) 260 Karl Marx, from Capital (1867) 265 Francis Galton, from Hereditary Genius (1869) 269 Mark Twain, from Innocents Abroad: Or, The New Pilgrim’s Progress (1869) 272 Deaf and Deaf-Mute Servants in the Sultan’s Court (1870–1909) 273 Charles Darwin, from The Descent of Man (1871) 274 Victoria Woodhull, “Tried as by Fire” (1871) 280 Victoria Woodhull on Women’s Suffrage (1871) 281 Hindu Testimony Acts (1872–1922) 282 Johanna Spyri, from Heidi (1880–1881) 282 Emperor Wilhelm of Germany, Speech before Parliament (1881) 284 Robert Louis Stevenson, from Treasure Island (1883) 284 Mary E. Wilkins Freeman, from “A Mistaken Charity” (1887) 286 Oscar Wilde, from “The Happy Prince” (1888) 290 “Sim Chung Jeon” (“The Dutiful Daughter”) (1889) 290 Emily Dickinson, “Much Madness Is Divinest Sense” (1890) 293 John Harvey Kellogg, from Plain Facts (1890) 294 Walt Whitman, from Collected Prose (1891) 294 Friedrich Nietzsche, from Thus Spoke Zarathustra (1891) 295 “The Legend of Knockgrafton” (1892) 296 Walter E. Fernald, from The History of the Treatment of the Feeble-Minded (1893) 298 Florence Kelley, “Injurious Employments” (1894) 301 Cesare Lombroso and William Ferrero, from The Female Offender (1895) 302 Max Nordau, from Degeneration (1895) 304 Charlotte Perkins Gilman, from Women and Economics (1898) 309 Charlotte Perkins Gilman, from “The Yellow Wallpaper” (1899) 311 Stephen Crane, from The Monster (1899) 312 Walt Whitman, from “The Wound-Dresser” (1900) 329 Helen Keller, from The Story of My Life (1902) 329 W. E. B. Du Bois, from “The Talented Tenth” (1903) 332 Carry A. Nation, from The Use and Need of the Life of Carry A. Nation (1905) 335 Upton Sinclair, from The Jungle (1906) 336 Joseph Conrad, from The Secret Agent (1907) 338 Clifford Beers, from A Mind That Found Itself (1910) 340 Konrad Biesalski, from Manual for the Care of Cripples (1911) 343 Contents of Volume V xli

Randolph Bourne, “The Handicapped” (1911) 344 Volume V Contents W. Y. Evans Wentz on Changelings and Fairy Faith (1911) 348 Charles B. Davenport, “Marriage Laws and Customs” (1912) 348 Maria Montessori on the Orthophrenic School (1912) 351 Isabelle Thompson Smart, from Studies in the Relation of Physical Inability and Mental Deficiency to the Body Social (1912) 352 Henry H. Goddard, “The Improvability of Feeble-Minded Children” (1913) 354 Sigmund Freud, from “On Narcissism: An Introduction” (1914) 357 Sigmund Freud, from Some Character-Types Met with in Psycho-Analytic Work (1916) 357 D. Amaury Talbot, from Woman’s Mysteries of a Primitive People: The Ibibios of Southern Nigeria (1915) 359 Frank B. Linderman, from Indian Why Stories (1915) 361 Franz Kafka, from The Metamorphosis (1915) 362 Ada M. Fitts, “Classes and Institutions” (1916) 363 Carl Sandburg, “Cripple” (1916) 366 Captain Arthur H. Samuels on Disabled Veterans (1918) 366 Violet Jacob, “Kirsty’s Opeenion” (1918) 367 Office of the Surgeon General, “War Cripple Axioms and Fundamentals” (1918) 367 Alice Duer Miller, “How Can a Woman Best Help?” (1918) 369 Two Cripples, “The Sluggard and the Ant” (1918) 370 Douglas C. McMurtrie, from The Disabled Soldier (1919) 371 Sherwood Anderson, from Winesburg, Ohio (1919) 380 John Dos Passos on Randolph Bourne (1919) 382 Karl Binding and Alfred Hoche, from Permission for the Destruction of Worthless Life, Its Extent and Form (1920) 383 W. E. B. Du Bois, “Race Intelligence” (1920) 383 O Hwa-Su, “The Bride Who Would Not Speak” (1920) 384 Ewald Meltzer, Survey to German Parents of 162 Disabled Children (1920) 384 Martin Barr, “Some Notes on Asexualization” (1920) 384 Helen MacMurchy, from The Almosts: A Study of the Feebleminded (1920) 386 T. S. Eliot, from The Waste Land (1922) 387 William Carlos Williams, “To Elsie” (1923) 387 Henry Edward Abt, from The Care, Cure, and Education of the Crippled Child (1924) 388 Thomas Mann, from The Magic Mountain (1924) 390 Oliver Wendell Holmes, Buck v. Bell, 274 U.S. 200 (1927) 390 D. H. Lawrence, from Lady Chatterley’s Lover (1928) 391 Nicholas O. Isaacson, “The Tie That Binds” (1928) 396 William Faulkner, from The Sound and the Fury (1929) 397 The Beginning of Korean Special Education (1929) 397 Thomas “Fats” Waller, Harry Brooks, and Andy Razaf, “What Did I Do To Be So Black and Blue” (1929) 398 “Where Work of Salvaging Human Beings Goes Forward” (1930) 399 xlii Encyclopedia of Disablility

Virginia Woolf, from On Being Ill (1930) 400 Erich Maria Remarque, from The Road Back (1931) 401 Ernest Hemingway, from “A Way You’ll Never Be” (1933) 403 Nathanael West, Miss Lonelyhearts (1933) 403 Contents Volume V Volume Kye Yong Muk, from “Adada the Idiot” [Paegch'i Adada] (1935) 404 The League of the Physically Handicapped (1935) 406 Kang Kyong-Ae, from The Underground Village [Jihachon] (1936) 406 National Socialist Propaganda, Volk und Rasse (1936) 408 Japanese Schools for the Physically and Mentally Handicapped (1937) 408 John Steinbeck, from Of Mice and Men (1937) 409 Social Security Report on Disability Insurance (1938) 410 Public Speech by the Bishop of Munster (1941) 410 Katharine Butler Hathaway, from The Little Locksmith (1943) 413 “N-P”: The Case of Neuropsychiatric Disability (1944) 414 Gwendolyn Brooks, from A Street in Bronzeville (1945) 415 Frida Kahlo (1907–1954) 416

Part Three: Culture and Resistance 1946–present

William Carlos Williams, from Paterson (1946) 421 Ann Petry, from The Street (1946) 421 Murrogh De Burgh Nesbitt, from The Road to Avalon (1949) 423 Anzia Yezierska, from Red Ribbon on a White Horse (1950) 424 Josephine Miles, Poems (20th c.) 425 Hah Keun-Chan, from “Ill-fated Father and Son” [Sunan I'dae] (1957) 426 German Movement of Mentally Disabled People (1958) 428 Harper Lee, from To Kill a Mockingbird (1960) 430 Erving Goffman, from Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (1961) 431 The Korean Child Welfare Committee, from Handicapped Children’s Survey Report (1961) 432 Thomas S. Szasz, from The Myth of Mental Illness (1961) 435 Michel Foucault, from The Birth of the Clinic (1963) 435 Thomas Pynchon, from The Crying of Lot 49 (1966) 437 From the Social Security Act of 1967, Section 223 (d)(3) (United States) 438 R. D. Laing, from The Politics of Experience (1968) 438 From the Rehabilitation Act of 1973 (United States) 439 Toni Morrison, from The Bluest Eye (1979) 442 Toni Morrison, from Sula (1973) 443 Contents of Volume V xliii

Union of the Physically Impaired Against Segregation, from Aims (1974) 444 Volume V Contents Alice Walker, from Meridian (1976) 446 John Gliedman and William Roth, from “The Grand Illusion” (1976) 447 Judi Chamberlin, from On Our Own: Patient-Controlled Alternatives to the Mental Health System (1978) 451 Sherwood Hall, from With Stethoscope in Asia: Korea (1978) 452 Leslie Fiedler, from Freaks, Myths and Images of the Secret Self (1978) 453 Self-Advocacy in Australia (1981) 454 Tetsuko Kuroyanagi, from Totto-chan: The Little Girl at the Window (1981) 456 Stanley Elkin, from The Magic Kingdom (1985) 460 Australian Disability Advocacy (1980s) 465 Cheryl Marie Wade, “I Am Not One of The” (1987) 467 Sally Zinman, Howie T. Harp, and Su Budd, from Reaching Across: Mental Health Clients Helping Each Other (1987) 467 “Position of the Students, Faculty and Staff of Gallaudet University” (1988) 467 Audre Lorde, “A Burst of Light: Living with Cancer” (1988) 468 Michelle Cliff, “If I Could Write This in Fire, I Would Write This in Fire” (1988) 471 Katherine Dunn, from Geek Love (1989) 471 From the Americans with Disabilities Act of 1990 (United States) 472 Law on the Protection of Disabled Persons of 1990 (China) 474 Walt Stromer on the Functional Brutality of Military Medicine (1990) 477 World Federation of Psychiatric Users, Minutes of the First Committee Meeting (1991) 477 Robert Brown and Hope Schutte, from Our Fight: A Battle against Darkness (1991) 479 From Dendron News (1992) 482 Disability Discrimination Act of 1992 (Australia) 482 National Empowerment Center’s Mission Statement (1992) 485 Richard Powers, from Operation Wandering Soul (1993) 486 The Hunter College Disability Studies Project, “Definition of Disability Studies” (1990s) 488 Mike Ervin, The History of Bowling (1999) 490 Steven Brown, Institute on Disability Culture Manifesto (1999) 494 Emma Morgan, “Attention Deficit Disorder” (1996) 496 Michael Bérubé, from Life as We Know It: A Father, a Family, and an Exceptional Child (1996) 497 European Union Disability Policy (1997) 499 Not Dead Yet 501 Stephen Kuusisto, from “Harvest” (1997) 502 Judi Chamberlin, from “Confessions of a Noncompliant Patient” (1998) 503 Sally Clay, “People Who” (1998) 503 The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (United States) 503 Jim Ferris, “Poems with Disabilities” (2000) 504 Susan Nussbaum, “Parade” (2000) 504 xliv Encyclopedia of Disablility

From the Charter of Fundamental Rights of the European Union, (2000) 508 Council Decision of 3 December 2001 on the European Year of People with Disabilities 2003 (2001) 509 The Disability Media Action and Awareness Project, “‘Do You Mean to Say Contents Volume V Volume What We Hear?’ A Disability Language Reference” (2000–2001) 514 Apology on the 75th Anniversary of the Buck v. Bell Decision (2002) 516 International Commemoration Committee on Eugenic Mass Murder (2003) 516 Disabled Students Union Meeting (2003) 517 Los Angeles Times on Eugenics Apologies (2003) 518 Margaret Talbot, from “The Executioner’s I.Q. Test” (2003) 520 Andrea Dworkin, “Through the Pain Barrier” (2005) 521

Chronology C1 Searching for and Evaluating Websites W1 Volume V Illustrations xlv )4 BCE )80 BCE )45 BCE )7 The Bible by Masaccio (1401–1428) 111 (Anonymous) 110 BCE Ancient World by Lucas van Leyden (1494–1538) Leyden by Lucas van 106 by Nicolas Poussin (1594–1665) 100 ) 105 by Raphael (1483–1520) 103 CE , V by El Greco (Domenikos Theotokopoulos, by El Greco (Domenikos 1541–1614) 104 by Jacopo Robusti Tintoretto (1518–1594)Tintoretto by Jacopo Robusti 48 , by Albrecht Dürer (1471–1528)by 97 Part One: Origins of Disability Part (1579–1581), (1518–1594)Tintoretto by Jacopo Robusti 102 (3rd c. by Jacopo Robusti Tintoretto (1518–1594)Tintoretto by Jacopo Robusti 47 LLUSTRATIONS (1808),Auguste Ingres (1780–1867) by Jean 61 (1650), (1611–1668)Alphonse Dufresnoy by Charles 50 I (1576) (1517–1520) OLUME V IST OF Distributing Alms and the Death of Ananias Alms and the Death of Distributing Christ Healing the Blind at Jericho, Healing a Cripple with His Shadow, St. Peter The God Besh, of Hathor,Temple from the Dendera, EgyptArms 1,000 with Avalokitesvara Bodhisattva 8 16 Blind Harpist, Nineteenth Dynasty 31 the Earth MonsterTempting Tezcatlipoca 38 Tyr,Tribes, God of the Germanic the Original Sky Wolf, with a Chained FenrirHephaistos, 41 God of Fire, Bronzework, and Craftsmen (6th c. Ancient Sumerian Cuneiform Tablet (1300 Tablet Ancient Sumerian Cuneiform Christ among the Doctors, Christ Healing the Blind at Jericho, Christ Heals the Paralytic The Transfiguration Mythological “Scarface” Genie from Baktriana, in Eastern Iran (3rd or 2nd c. Mars, Venus, and Vulcan, Vulcan of The Forge Oedipus and the Sphinx The Healing of the Blind Man, Christ Heals a Blind Man The Death of Socrates The Death of Socrates Carrying a Hare (480–470 and Dwarf Doctor Bleeding a Patient IN L xlvi Encyclopedia of Disablility

The Middle Ages

St. Augustine Healing the Plague Victims, by Jacopo Robusti Tintoretto (1518–1594) 114 Aesop with Animals, 1476. 119 People on a Cart, by Giacomo Jaquerio (15th c.) 125 “Saint Francis Receiving the Stigmata: Suffrage to Saint Francis” (15th c.) 128 Livre des proprieté des choses, by Barthelemy l’Anglais 135 Doctor Operating on a Man’s Skull, by Guy de Pavia (14th c.) 136 Distribution of Alms to Poor and Lame (15th c.) 137 Saint Lawrence Distributing Alms to the Poor, by Fra Angelico (1387–1455) 138 St. Wolfgang Heals the Possessed Woman Brought before Him, by Michael Pacher (ca. 1434–1498) and Friedrich Pacher (1475–1481) 139 Last Judgment: Detail of the Damned in Hell, by Rogier (Roger) van der Weyden (ca. 1399–1464) 140 Minerva Chasing the Vices out of the Garden, by Andreas Mantegna (1431–1506) 141 Saint Bernard Exorcising an Evil Spirit and Death of Saint Bernard of Clairvaux, by Joerg Breu, the Elder (1475–1537) 142 The Last Judgement (ca. 1500), by Hieronymous Bosch (1450–1516) 143 Volume V Volume Illustrations Part Two: Modernity and Normalization

1500–1800

Ship of Fools, by Hieronymous Bosch (1450–1516) 148 King James I of England (ca. 1619) by Paul van Somer I (ca. 1576–1621) 149 Michel de Montaigne (1533–1592) Writing 150 Edmund Kean as Richard III, by John James Halls (19th c.) 158 The Mute Woman, by Raphael (1483–1520) 159 The Cripples, by Pieter Brueghel the Elder (1525–1569) 169 Dulle Grillet [Mad Meg] (1562–1566), by Pieter Brueghel the Elder (1525–1569) 172 Parable of the Blind Leading the Blind, by Pieter Brueghel the Elder (1525–1569) 175 La Monstrua (1680), by Juan Carreno de Miranda (1614–1685) 177 Portrait of the Jester Sebastian de Morra, by Diego Rodriguez Velázquez (1599–1660) 180 Las Meninas, or the Family of Phillip IV, by Diego Rodriguez Velázquez (1599–1660) 186 Nuns Attending at the Infirmary (Anonymous, 18th c.) 191 The Madwoman, by Théodore Géricault (1791–1824) 202 King Lear Weeping over the Body of Cordelia (1786–1788), by James Barry (1741–1806) 206 The Sleep of Reason Produces Monsters, by Francisco de Goya (1746–1828) 209 Laennec at the Necker Hospital Ausculting a Tuberculosis Patient in Front of His Students (1816), by Theobold Chartran (1849–1907) 212 Movie Still from Frankenstein (1931), directed by James Whale 213 Lord Byron, English Poet, by Thomas Lawrence (1769–1830) 216 List of Illustrations in Volume V xlvii

1800–1945

Illustration for The Hunchback of Notre Dame, by Luc Olivier Merson (1846–1920) 224 From the Black Paintings, by Francisco de Goya (1746–1828) 227 Rotary Machine for the Treatment of Moral Sufferers 235 King Lear and the Fool in the Storm (1836), by Louis Boulanger (1806–1867) 240 Harriet Tubman, by Jacob Lawrence (1917–2000) 253 Mementos of Soldiers Who Fought in the U.S. Civil War and Surgeon’s Kit 256 Daguerreotype (1849) of Dorothea Lynde Dix (1802–1887) 274 A Lesson on Hysteria by Dr. Jean Martin Charcot (1823–1890), by Andre Brouillet (1857–1920) 281 Doctor Philippe Pinel Orders the Removal of the Chains at the Lunatic Asylum, by Tony Robert-Fleury (1838–1911) 285 The Bedroom at Arles (1889), by Vincent van Gogh (1853–1890) 294 Illustrations Portrait of Dr. Felix Rey, by Vincent van Gogh (1853–1890) 297 Volume V Department for Violent Female Mental Patients at San Bonafacio in Florence, Italy, by Telemaco Signorini (1835–1901) 305 Mark Twain and Helen Keller (ca. 1908), by Isabelle B. Lyon (1868–1958) 330 Prisoner’s Walk (1890), by Vincent van Gogh (1853–1890) 337 “The Qualities of the Jew After Gall’s Method,” by Emile Courtet 349 The Scream (1893), by Edvard Munch (1863–1944) 353 “Patients’ Examination” during a Mission Studying Sleeping Sickness in French Congo (1907) 360 Auguste Renoir (1841–1919) at His Easel (1914) 364 Movie Still from The Hunchback of Notre Dame (1923), directed by Wallace Worsley 385 Movie Still from The Wizard of Oz (1939), directed by Victor Fleming 398 Poster for Freaks (1932), directed by Tod Browning 401 Movie Still from The Story of Alexander Graham Bell (1939), directed by Irving Cummings 409 The Autopsy Table 411 What the Water Gave Me (1938), by Frida Kahlo (1907–1954) 416 Without Hopes (1945), by Frida Kahlo (1907–1954). 416 The Broken Column (1944), by Frida Kahlo (1907–1954) 417 The Two Fridas (1939), by Frida Kahlo (1907–1954) 417

Part Three: Culture and Resistance (1946-present)

Movie Still from The Best Years of Our Lives (1946), directed by William Wyler 424 Movie Still from The Secret Garden (1949), directed by Fred M. Wilcox 426 Movie Still from The Men (1950), directed by Fred Zinnemann 430 Movie Still from A Stolen Face (1952), directed by Terrence Fisher 433 xlviii Encyclopedia of Disablility

Movie Still from Rear Window (1954), directed by Alfred Hitchcock 436 Movie Still from Richard III (1955), directed by Laurence Olivier 440 Movie Still from The Seventh Seal (1957), directed by Ingmar Bergman 445 Movie Still from The Miracle Worker (1962), directed by Arthur Penn 448 Movie Still from Whatever Happened to Baby Jane?, directed by Robert Aldrich (1962) 452 Movie Still from Dr. Strangelove (1964), directed by Stanley Kubrick 454 Images of Disability on Stamps 455 Movie Still from Coming Home (1978), directed by Hal Ashby 461 Circle Story #3: Susan Nussbaum, by Riva Lehrer (1998) 466 Movie Still from Elephant Man (1980), directed by David Lynch 469 Movie Still from Whose Life Is It Anyway? (1981), directed by John Badham 470 Movie Still from My Left Foot (1989), directed by Jim Sheridan 472 Fidelity, by Katherine Sherwood (2000) 473 Fidelity II, by Katherine Sherwood (2000) 474 Movie Still from The Waterdance (1992), directed by Neil Jimenez and Michael Steinberg 475 Movie Still from Afraid of the Dark (1992), directed by Mark Peploe 476

Volume V Volume Movie Still from Blink (1994), Directed by Michael Apted 484 Illustrations Korean Protest of Socially Marginalized Peoples: Intersexed, Lesbian, Disabled, Prostitutes, Seoul, Korea, 2003 487 Movie Still from Enchanted Cottage (1994), directed by John Cromwell 488 Circle Story #5: Mike Ervin and Anna Stonem, by Riva Lehrer (1998) 489 Movie Still from The Piano (1994), directed by Jane Campion 490 Big Picture, by Tim Lowly (1997) 493 Japanese Protesters with Wheelchair Barricade, 2004 498 Japanese Protest Organizers Preparing for Press Conference, 2004 501 Japanese Protest Banner, 2004 502 Disability Protester at the 2004 World Social Forum in Mumbai, India 505 Disability Protest at the 2004 World Social Forum in Mumbai, India 510 Proud Short-Statured Woman and Dog at the Chicago Disability Pride Parade, 2004 515 Disabled Protesters at the 2004 World Social Forum in Mumbai, India 517 Circle Story #1: Jeff Carpenter, by Riva Lehrer (1997) 520 “Bodies in Commotion,” by Sharon Snyder (2003) 522 “Disabled and Proud” wheelchair lovers hug each other during the Chicago Disability Pride Parade, 2004 524 J

ᨘ JACKSON, WILLIAM HENRY but had inspired many Burmese blind people with the confidence to live fuller lives. (1889–1931) English educator and priest —Kumur B. Selim

Father William Henry Jackson lost his sight in early See also Blind, History of the. childhood, became an Anglican priest, and worked in Further Readings Myanmar (formerly Burma) for 14 years. Formal education for blind children had been Purser, Mary C. 1932. An Ambassador in Bonds. London: Society started at Moulmein by a newly blind teacher, Maung for Propagation of the Gospel. Purser, W. C. B. 1922. “A Mission to the Blind of Burma.” The Pe Gyu, in 1900. A school opened at Rangoon in 1901, East and the West 20:338–343. and some Burmese Braille books were produced. The Mission to the Blind of Burma was begun in 1914 by ᨘ Will and Mary Purser, bringing people to Rangoon for JAHIZ, AL- (ABU OTHMAN eye surgery and providing education and job training AMR BIN BAHR) (776–777) to some blind children. Mary Purser’s brother, “Willie” Arab intellectual and essayist Jackson, who was ordained in 1912, had studied at London, Oxford, and Leeds. He traveled to Burma Al-Jahiz, nicknamed for his “goggle eyes” (jahiz), was in 1917 with Will Purser and immersed himself in an erudite, prolific, and notably ugly writer at Basra and Burmese language and lifestyle: He “adopted Burmese Baghdad. His essays on many topics are still much dress and food; he sleeps on the floor without a quoted in the Middle East. Reacting against public dis- mosquito curtain, and he eats his food with his hands dain for his own facial appearance, he became one of the and goes about without any covering on his feet or earliest advocates for greater acceptance of disabled head” (Purser 1922). people. Al-Jahiz (1954) asserted that impairments or Jackson engaged vigorously in education and skill odd appearance “do not hinder an individual from training of blind Burmese children and young people, being a fully active member of the Muslim community and he was a powerful role model. He accepted no or bar him from important offices”; on the contrary, limits to what blind people could do. In 1930, the gov- these “may be called signs of divine blessing or favor.” ernment of Burma awarded him the highest civilian He distinguished various levels of hearing impairment honor, the Kaiser-i-Hind gold medal. He died young and noted that when a deaf person could not speak it

983 984———Jernigan, Kenneth (1926–1999) was because “having never heard sounds, articulated or including furniture maker, insurance salesman, and, otherwise, he does not know how to produce them” (Al- briefly, professional wrestler. He received a degree in Jahiz 1969). Elsewhere, Al-Jahiz (1983) commented on literature from Peabody University, and soon after went the silent language of signs and gestures used at meal- to teach at the Tennessee School for the Blind. In 1953, times by courtiers under the Sassanid rulers (224–636 CE). he was encouraged by tenBroek to move to California to work at the Orientation Center for the Blind in —Kumur B. Selim Oakland. In 1958, he became the first blind director of See also Abu 'l-`Ala al-Ma`arri; Abu 'l Aswad ad-Duwali; `Ata ibn the Iowa Commission for the Blind, a position he held Abi Rabah; Khalil, Al-; Middle East and the Rise of Islam. until 1978. During his time in Iowa, the commission was transformed from the worst to the best agency Further Readings serving blind adults in the United States, and Des Moines Jahiz, Al-. 1954. Kitab At-Taj (Le livre de la couronne), translated became the epicenter of the blind movement. by C. Pellat. Paris. Jernigan joined the NFB in 1949, and he was its vice Kitab Al-Hayawan ———. 1969. (The Book of Animals), edited president by 1958. Jernigan’s rise to power occurred in by Harun. Cairo. In C. Pellat. 1969. The Life and Works of Jahiz, translated (from French) by D. M. Hawke. London. the context of a bitter struggle for the leadership and ———. 1983. Al-Barsan wal-Argan wal-Umyan wal-Hawlan direction of the NFB, resulting in the expulsion of sev- (The Lepers, the Lame, the Blind, and the Squinting), edited eral state affiliates and the creation of a splinter group by Abdel-Salam Haroun. 1998. Cairo. Quotation translated in 1961, the American Council of the Blind (ACB). by Michael Dols. 1983. “The Leper in Medieval Islamic Jernigan’s philosophy of blindness was that the Speculum Society.” 58:891–916. average blind person could do the work of an average sighted person when the former was given proper ᨘ JAPAN blindness adjustment training. With such training, Jernigan asserted, blindness could be reduced to a mere See Disabled Persons’ Fundamental Law of 1993 physical nuisance. (Japan); Experience of Disability: Japan; —Brian R. Miller Rehabilitation Engineering Society of Japan (RESJA) See also Activism; Blind, History of the.

Further Readings ᨘ JERNIGAN, KENNETH Matson, Floyd. 1990. Walking Alone, Marching Together: A History of the Organized Blind. Baltimore: National (1926–1999) Federation of the Blind Press. American activist Megivern, James J. and L. Margorie. 2003. People of Vision: A History of the American Council of the Blind. Washington, Kenneth Jernigan, born blind, was one of the pre- DC: American Council of the Blind. eminent leaders of the struggle for equality waged by blind people during the twentieth century. He served Websites as president of the National Federation of the Blind American Foundation for the Blind, www.afb.org (NFB) from 1968 to 1986, with one brief interruption National Federation of the Blind, www.nfb.org in 1978–1979. As president emeritus, he remained actively involved in the NFB and its operations until ᨘ his death in 1999. Jernigan was mentored by Jacobus JIRI, JAIROS (1921–1982) tenBroek, the NFB’s first president, and one of the African philanthropist most influential voices addressing discrimination against the blind in the United States. As African philanthropist and founder of the Jairos Born in Detroit, Jernigan grew up in Tennessee on Jiri Association in 1950, Jairos Jiri and his accom- a family farm. He held many jobs as a young man, plishments in Zimbabwe stand out in the history of Job Analysis and Placement———985

African rehabilitation services. The son of a local industrial/organizational (I/O) psychologist does. chief, Jiri obtained virtually no education. At the age Information from a job analysis is used for many of 18, he set out to Bulawayo, where he was struck by purposes, and there are many methods for conducting the fate of disabled people as beggars. Encouraged by a job analysis. This entry briefly describes these purposes the knowledge that something could be done, he took and methods. them into his home and generated help from others in teaching them basket making and shoe repair. The Purposes of Job Analysis efforts institutionalized very quickly, first with the assistance of the colonial administration, and later Information from job analysis can be used for with international aid. many different purposes, such as job description, This led to one of the largest associations of its kind, recruitment and selection, placement, performance the Jairos Jiri Association, serving more than 13,000 assessment, training, compensation, criterion devel- disabled children and adults annually. Among its many opment, career development, legal issues, job design establishments are schools, clinics, homes, hostels, and redesign, and workforce reduction and restructur- vocational training centers, community-based rehabilita- ing. Professionals in human resources departments tion programs, scholarship funds, orthopedic workshops, of business organizations and government agencies and outreach and follow-up integration programs. The make extensive use of the information from a job association looks to (1) assist, treat, and rehabilitate analysis for these and other purposes. A disability- persons with physical, visual, and hearing impair- related application of job analysis occurs when ments; (2) establish clinics, schools, centers, and other rehabilitation counselors develop vocational plans to institutions for the education and welfare of the hand- assist persons with disabilities obtain employment. icapped; and (3) liaise with the government of Zimbabwe and local and international agencies. Methods of Job Analysis —Patrick Devlieger Many of the methods used in performing a job analysis can be categorized into either a work-oriented See also Developing World; Experience of Disability: Sub-Saharan approach or a worker-oriented approach. In a work- Africa; Job Training; Vocational Rehabilitation. oriented approach, the emphasis is on the tasks per- formed by an incumbent or what a person does on the Further Readings job. These tasks can be further subdivided into activi- Devlieger, Patrick. 1995. “From Self-Help to Charity in Disability ties, and each activity may consist of several actions or Disability Service: The Jairos Jiri Association in Zimbabwe.” elements. Two of the most well-known methods of job & Society 10:39–48. Farquhar, June. 1986. Jairos Jiri: The Man and His Work. analysis in the work-oriented approach are the func- 1921–1982. Gweru, Zimbabwe: Mambo Press. tional job analysis (FJA) and task inventories. Iliffe, J. 1987. The African Poor. Cambridge, UK: Cambridge FJA was used in developing the Dictionary of University Press. Occupational Titles (DOT), which was designed to match people to jobs in the U.S. economy. The fifth edition of the DOT, published in 1991, provides infor- ᨘ JOB ANALYSIS mation on more than 13,000 occupations in the U.S. AND PLACEMENT economy. Task inventories are very popular in busi- ness organizations. Based on interviews with a small, JOB ANALYSIS representative sample of subject matter experts (SMEs) such as incumbents and supervisors, task The goal of a job analysis is to describe the tasks inventories are developed and administered to incum- associated with the job and then articulate the human bents and supervisors for gathering information on attributes necessary for successfully performing those which tasks are performed on the job, how frequently tasks. Job analysis is an important part of what an tasks are performed, and their importance. In general, 986———Job Analysis and Placement more tasks are included in a task inventory than in Each job analysis method has its own strengths an FJA. Finally, another example of a work-oriented and weaknesses, and no one method is adequate for approach to job analysis is the critical incident technique all purposes. So the choice of a method must be based (CIT). With CIT, SMEs are asked to recall specific on the purpose for a job analysis. Careful considera- instances of worker behavior, which represent either tion should also be given to the costs associated with exceptional or unacceptable performance on the job. implementing a given job analysis method. In a worker-oriented (or person-oriented) approach, the emphasis is on obtaining information about the JOB PLACEMENT attributes and characteristics required for a successful performance on the job. These attributes and charac- In filling vacancies in a given job, the emphasis teristics are commonly referred to as KSAOs (knowl- is on finding the most qualified people for the job edge, skills, abilities, and other personal characteristics (or individuals most likely to succeed on the job). This such as personality variables, interests, training, and is a case of straightforward selection. When there are experience). One of the most popular methods of job vacancies for several jobs, one is concerned about analysis in the worker-oriented approach is the Position how best to fill all vacancies simultaneously with the Analysis Questionnaire (PAQ). It is a commercially same applicant pool. This is a case of placement. That available questionnaire, with computer scoring and is, one is called on to place an applicant rather than multiple report-generation options. The PAQ consists to select an applicant. One may think of selection as of 194 items. Other examples of methods in the choosing one applicant from among many applicants worker-oriented approach are the job element method, to fill a job opening. In contrast, placement involves Job Element Inventory, Job Components Inventory, matching multiple applicants with multiple jobs. In Occupational Analysis Inventory, and Common Metric general, placement is more involved and complex than Questionnaire. selection. In either case, reliable and valid job analy- A new method of job analysis, which reflects both sis information is a prerequisite. the work-oriented and worker-oriented approaches, Selection has received much more attention than is the Occupational Information Network or O*NET. placement by I/O professionals. Failure to attend It was developed by the U.S. federal government and to issues of placement can be long-lasting. All indi- was designed to replace the DOT. The O*NET is a viduals who want to work should have the opportunity collection of databases with an expert computer sys- to do so. If an individual does not meet the minimal tem for facilitating person-job matches. The founda- requirements for one job, she or he should be consid- tion of the content model underlying the O*NET ered for other available jobs. That is, job placement centers on worker requirements, experience require- should be given a top priority. ments, worker characteristics, occupational requirements, —Nambury S. Raju occupation-specific requirements, and occupation characteristics. The O*NET system is relatively new See also Employment; Job Retention; Job Training; Vocational and web based, but it does not include all jobs/ Rehabilitation. occupations. Further Readings Brannick, M. T. and E. L. Levine. 2002. Job Analysis: Methods, Sources of Information Research, and Applications for Human Resource Management Typically, job analysts, incumbents, supervisors, in the New Millennium. Thousand Oaks, CA: Sage. and trained observers are the sources of job analysis Cascio, W. F. 1991. Applied Psychology in Personnel Management, information. This information can be obtained in inter- 4th ed. Englewood Cliffs, NJ: Prentice Hall. Harvey, R. J. 1991. “Job Analysis.” Pp. 71–163 in Handbook of views, via questionnaires, by observation, and by actu- Industrial and Organizational Psychology, Vol. 2, edited by ally performing the job in question. Multiple sources M. D. Dunnette and L. H. Hough. Palo Alto, CA: Consulting and collection methods are often used in practice. Psychologists Press. Job Retention———987

Peterson, N. G., M. D. Mumford, W. C. Borman, P. R. Jeannert, with Disabilities Act of 1990 (ADA) is the most and E. A. Feishman, eds. 1999. An Occupational Information significant piece of protective legislation for U.S. System for the 21st Century: The Development of O*NET. workers with disabilities and has strict limits on whom Washington, DC: American Psychological Association. and how much firms must accommodate. The United States experienced two major business ᨘ JOB RETENTION cycles over the past two decades of the twentieth century—1979 through 1989 and 1989 through 2000. Involuntary job loss either by plant closings, layoffs Over the first, the employment rates of working-age due to slack demand, or firings for cause will have people with and without disabilities were pro-cyclical, negative short-run effects on discharged workers’ falling over the recession years of the early 1980s and earnings and can have significant long-term effects rising over the long period of growth from 1982 to on the economic well-being of their families. Because 1989. However, the rise in the employment of those the U.S. labor market is considerably less regulated with disabilities was not as great as those without dis- by government than other Organization for Economic abilities, so over the decade their employment rate fell Cooperation and Development (OECD) countries and relative to those without disabilities. because only about 10 percent of U.S. private sector The relative employment rate of people with dis- workers belong to unions, American workers have abilities fell even more over the 1990s business cycle. much less formal protection against involuntary job While the employment of both those with and without loss than workers in other OECD countries. disabilities fell from 1990, the business cycle peak On the other hand, the greater flexibility of year, to 1993, during the growth years 1993 to 2000 American labor markets also means that American the employment of those without disabilities rose workers are better able to enter the labor market and while the employment of those with disabilities fell. voluntarily move from one job to another. In addition, The employment rates of both those with and without American firms are better able to adjust their mix of disabilities fell between 2000 and 2003, but the machines and labor in their production process, intro- employment rate of those with disabilities fell faster duce new technologies, and compete in the interna- than that of those without disabilities. tional marketplace. Between 1979 and 2000, the household income of The end result is that the American labor market working-age people with disabilities remained about is more flexible, allows greater voluntary job mobility, the same. Their wage-earning declines were offset by and is better able to reward skilled and highly edu- increases in their disability transfers (Social Security cated workers but also has greater wage inequality, Disability Insurance [SSDI] and Supplemental more lower-paying jobs, and greater risks of involun- Security Income) and by the greater earnings of other tary job loss than the more regulated labor markets in household members. But their overall household other OECD countries. income fell relative to those without disabilities, Working-age people with disabilities in the United whose income rose significantly over this period of States likewise have much less formal job protection substantial economic growth. either via government regulation or union protection Most working-age people with disabilities experi- and must compete in much more dynamic labor mar- ence the onset of their disability after they enter the kets than their counterparts in other OECD countries. labor market. Research shows that the social environ- Germany, for instance, has a formal quota system ment, rather than the impairment itself, is the critical (that penalizes firms that do not employ a minimum factor in determining how long workers with disabili- percentage of workers with disabilities) and prohibits ties remain in the work force. The average length of employers from dismissing workers based on their time before they apply for SSDI benefits following disability. In contrast, the United States forbids the onset is 15 years, and only 72 percent of workers with use of job quotas and allows employers much greater disabilities will ever apply for SSDI benefits. The rest freedom in hiring and firing workers. The Americans continue in the labor force until they exit onto the 988———Job Retention

Social Security retirement program. The timing of cycle and has done so, relative to those without disabil- SSDI application is affected (holding the seriousness of ities, since the mid-1980s. The causes of this decline in the worker’s impairment constant) by a worker’s char- relative employment are controversial, but the prepon- acteristics and the economic incentives he or she faces. derance of the evidence suggests that it was not caused The variables that most affect how long a worker by an increase in the severity of their impairments. will delay application for SSDI following the onset of Rather, the causes are related to the changing social a work-limiting health condition are the worker’s age environment faced by workers with disabilities. at the onset of the condition, the worker’s education, The most likely cause is the substantial reduction whether the worker was accommodated, and the rela- in the eligibility standards for entry onto the SSDI tive rewards of working versus going onto SSDI. rolls that occurred in the mid-1980s. Research has Other things equal, younger and better-educated shown that U.S. workers who experience the onset of workers will delay application longer than older or a disability in states with higher SSDI acceptance less-educated workers. But accommodation matters. rates are quicker to apply for benefits and that in such Employees who are accommodated by their employer states the employment rates of workers with disabili- stay in the labor force longer than those who are not. ties are lower relative to those without disabilities. This is true across a wide range of accommodations. It has also been argued that the increased costs firms The most frequent firm accommodations are not costly must bear to accommodate workers with disabilities from an accounting perspective, although they may be have made them less likely to hire such workers and from a work organization perspective. They are changes that this unintended consequence of the ADA offsets in job hours and changes in job responsibilities. its positive impact via increased duration on the job for But economic incentives also matter. Those work- those who are accommodated. The evidence of a neg- ers whose future earnings are higher or who are less ative ADA effect on employment is more controversial likely to be accepted onto SSDI will delay applying and has been shown to be sensitive to alternative defi- for benefits and continue in the labor force longer than nition of the population with disabilities. workers with lower future earnings and higher likeli- Market forces influence the employment of working- hoods of SSDI acceptance. age people with and without disabilities. The skills that These findings are based on the accommodation people with disabilities bring to the job will affect their behavior of firms and their workers prior to the imple- chances of employment, their duration on the job, and mentation of the ADA in 1992. About 23 percent of the age they leave the labor market. The wage pre- workers who experienced a disability were accommo- mium that those with more than a high school educa- dated prior to 1992. Simulations that project the expe- tion command has dramatically increased over the past rience of these accommodated workers on all workers two decades. This is true both for those with and with- suggest that their average duration before applying for out a disability. The best predictor of job market suc- SSDI benefits would rise by about 2.5 years, if accom- cess is one’s level of education, and in the constantly modation were provided to all workers following changing American job market, the long-term rewards the onset of a disability. But this positive employment to well-educated workers demonstrate its value. Hence policy initiative could be offset by further easing of those workers with good job skills and high education SSDI acceptance rules or increases in SSDI benefits levels are the most likely to be retained by their employ- relative to future earnings. ers during bad times and to command higher salaries The recent employment experience of working-age during both good and bad times. people with disabilities is discouraging. Despite the Government policy can also influence the employ- increased duration in employment that accommodation ment of working-age people with disabilities. Pro-work brings and the likely rise in the percentage of workers policies that foster rehabilitation, job-enhancing with disabilities who were accommodated in the 1990s skills, and accommodation will increase job retention following the implementation of the ADA, their and more generally integrate working-age people with employment rates fell over the entire 1990s business disabilities into the labor market. Reduction of eligibility Job Training———989 standards for SSDI and other disability transfer pro- work skills, is often viewed as a way of assisting the grams that require beneficiaries to demonstrate that employee in mastering the essential function of a job. they are not able to work before they can receive ben- The outcome of such training is the development of efits will have the unintended consequence of further skills that will allow the employee to meet the stan- reducing the employment of working-age people with dards set by the employer. Job training can be viewed disabilities who could work. as generalized preservice and mentorship/apprentice training or training that occurs in response to a specific —Richard V. Burkhauser job. For persons with disabilities, when considering See also Americans with Disabilities Act of 1990 (United States); job training one has to consider the broader perspective Disability Law: United States; Employability; Employment; of identification, accessing, and maintaining employ- Employment, International. ment since these are intertwined in the process of securing and advancing in employment. Further Readings This entry briefly reviews the principles driving job Bound, John and Richard V. Burkhauser. 1999. “Economic training, approaches for persons with disabilities, and Analysis of Transfer Programs Targeted on People with the challenges and opportunities to job training in the Handbook of Labor Economics Disabilities.” Pp. 3417–3528 in , future. This overview will provide the reader with a Vol. 3C, edited by Orley C. Ashenfelter and David Card. Amsterdam: Elsevier Science. broad view of job training for persons with disabilities Burkhauser, Richard V., J. S. Butler, and Gulcin Gumas. 2004. “A from a philosophical as well as a practical level. While Dynamic Programming Model of Social Security Disability this entry addresses job training for individuals who Insurance Application.” Journal of Applied Econometrics have a disability, it is important to note that the 19:671–685. approaches used are more similar than different for all Burkhauser, Richard V., J. S. Butler, Yang-Woo Kim, and Robert job seekers, those with as well as without disabilities. Weathers. 1999. “The Importance of Accommodation on the Timing of Male Disability Insurance Application: Results from the Survey of Disability and Work and the Health and PRINCIPLES DRIVING JOB TRAINING Retirement Study.” Journal of Human Resources 34(3): 589–611. The changing perceptions about the capacity of Marin, Bernd, Christopher Prinz, and Monika Queisser, eds. 2004. persons with disabilities, advances in job training Transforming Disability Welfare Policies: Toward Work and strategies, and new technologies have all contributed Equal Opportunities. Burlington, VT: Ashgate. Stapleton, David C. and Richard V. Burkhauser, eds. 2003. The to a new way of looking at job training for persons with Decline in Employment of People with Disabilities: A Policy disabilities. The realization that persons with disabili- Puzzle. Kalamazoo, MI: W. E. Upjohn Institute for ties can and in many instances want to work has been Employment Research. supported in many countries by changes in legislation, policies, and practices that have encouraged persons Websites with disabilities to consider employment and employ- ILR Program on Employment and Disability, “Disability ers to view persons with disabilities as part of the Employment Policy: Related Publications for Rehabilitation workforce. Research and Training Center (RRTC),” http://www.ilr.cornell Legislation banning discrimination, providing .edu/ped/dep/dep_pubs.html?cat_id=8 ILR Program on Employment and Disability, “Disability incentives to hire, and establishing hiring quotas have Statistics: An Online Resource for U.S. Disability Statistics,” all contributed to an increased awareness about the http://www.ilr.cornell.edu/ped/DisabilityStatistics/index.cfm employment of persons with disabilities. In a compli- mentary fashion, the recent movement toward self- advocacy has also served to increase the awareness ᨘ JOB TRAINING by persons with disabilities about the opportunities that may exist in the labor market. The combination Job training, both for those employees new to the of increased self-advocacy, changing ways to support work setting and those needing to acquire additional and match individual skills to industry needs, and 990———Job Training administrative incentives has served to support specialized training and work settings is giving way increased employment of persons with disabilities in to direct placement and on-site supports based on the many countries. results of considerable research in supported employ- ment. Job training is happening in the workplace with the assistance of an outside support, an employment APPROACHES TO JOB TRAINING training specialist, or job coach. This support addresses The of employment for persons with dis- not only skill acquisition but also identification of avail- abilities is reflective of overall societal perceptions of able social supports that are naturally present in the disability in general. This evolution has gone from no work setting. The employment training specialist facil- expectation to a recognition that persons with disabil- itates initial training, fading support and shifting the ities can and want to work. Job training approaches training and support to the employer and coworkers as for job seekers who have a disability have moved from the individual with disabilities approaches employer a pretraining or readiness design to one that places expectations and assimilates into the culture of the greater emphasis on on-the-job training. Early train- workplace. The linking of external supports to those ing efforts focused on the identification of individual naturally existing in the work setting and the training of deficits, the remediation of those deficits, and then coworkers as support resources, the hallmark of sup- the development of work-hardening or work tolerance ported employment, are now common practice in many skills. A myriad of work samples, paper-and-pencil, countries. and trial work strategies were the cornerstone of job As a reflection of this shift, trainers have evolved training strategies in many countries. These assess- from more formal skill trainers who may offer class- ment approaches were based on deficit identification room instruction in an external setting to on-site followed by remediation and skill development. This employment training specialists. Training on the essen- focus on deficit identification and work conditioning tial tasks of the job is not the only function of the placed the entire responsibility for job success on employment training specialist. Job accommodations adaptations by the individual with little recognition of and job modification may be introduced to both sup- any modifications in the actual work setting. port productivity and assist the individual with a dis- In the past two decades, the emphasis on job ability in being successful on the job. Modifications training has shifted to one of building on skills and may include the restructuring of tasks, the simplifica- interests and maximizing the abilities of the individual. tion of task sequences, the use of assistive devices and Informal and formal assessments addressing prefer- aids (e.g., pictures, cue cards), and the identification ences and interests were providing greater informa- of coworker supports for the individual. Job training tion than the more traditional work assessment tools. has moved away from specific skill acquisition to There was also a growing recognition that situational whole-job training including skill acquisition, social assessment, conducting an assessment in an actual supports, and job modification. work setting, provided greater information on both skills and interests. There continued to be, however, a FUTURE CHALLENGES focus on the person fitting the job. Moving from the utilization of situational assessments, job training in As the nature of an economy changes so do the demands many countries has embraced the strategy of matching of businesses. These demands require that the workforce individual skills and interests to demands in the work adapt, continually acquiring new skills. During the setting. This focus has led to a “goodness of fit” per- farming and periods, it was not uncom- spective where job training is a combination of skill mon for workers to remain at one job for their entire building and job modifications. Here both the individ- work history. With the advent of the technology and ual and the job setting are adapting. information era, job movement and job change became Paralleling this evolution of focus was a shift in the rule rather than the exception and changes in tasks the nature of the training setting. Total reliance on were at times a daily event in some industries. Johnson, Samuel (1709–1784)———991

More recently, with globalization, technology See also Affirmative Businesses; Consumer-Run Businesses; changes, and virtual work settings, the demands for Employability; Employment; Jiri, Jairos; Job Analysis and increased flexibility and greater proficiency in the use Placement; Job Retention; Vocational Rehabilitation. of technology continue to change the job training Further Readings arena. The idea of initial training has given way to continuous training where changes in the consumer Albin, J. M., L. Rhodes, and D. Mank. 1994. “Realigning marketplace have given rise to the creation of new Organizational Culture, Resources, and Community Roles: Changeover to Community Employment.” Journal of the products and new jobs. New approaches and tech- Association for Persons with Severe Handicaps 19:105–115. nologies such as multitasking, voice-activated infor- Bond, G. B., R. Becker, R. E. Drake, C. A. Rap, N. Meisler, and A. mation systems, smart technologies, and virtual work F. Lehman. 2001. “Implementing Supported Employment as an settings, along with globalization and workforce Evidenced-Based Practice.” Psychiatric Services 52:313–322. diversity, are all requiring those involved in job train- Kiernan W. E. and R. L. Schalock, eds. 1997. Integrated Employ- ing to think and behave differently. ment: Current Status and Future Directions. Washington, DC: American Association on Mental Retardation. These challenges are requiring job training profes- Wehman, P., W. G. Revell, and V. Brooke. 2003. “Competitive sionals to think differently about both the nature of Employment: Has It Become the ‘First Choice’Yet?” Journal training strategies and the setting for the delivery of of Disability Policy Studies 14(3): 163–173. training. The rate of job change, the changes in job duties, and the increased use of distance education ᨘ resources are an opportunity for job training to use JOHNSON, SAMUEL (1709–1784) technology for delivery of information as well as a English author and lexicographer way of reinforcing skill acquisition. Web-based train- ing, Listservs, and chat rooms are all ways that job Both a “great Cham” (tartar monarch) and “Caliban” training can be delivered now and in the future. (Shakespeare’s deformed slave in The Tempest) of let- Common instructional materials delivered through ters, Samuel Johnson gave his name to an age as the electronic media and reinforced by local trainers or most prominent literary author of his day. Best known support staff assist persons with disabilities in learn- for his Herculean (and Sisyphean) achievement of ing new skills not only at time of job access but also the first modern dictionary of the English language as a way of maintaining employment. The use of mul- (1755), Johnson also was an editor of Shakespeare, tistimulus input systems (seeing, hearing, touching), a moralist in a variety of genres—periodical essay, vehicles for immediate feedback, and strategies for Juvenalian satire, heroic tragedy, apologue, travel rapidly refreshing learned skills are all ways that job narrative—and in his Lives of the Poets (1779, 1781) training can support both initial learning and job a legislator of the English literary canon. Yet he was growth for persons with disabilities. often remembered by subsequent generations more as Effective strategies for job training have relevance a character than an author. for all employees. With older workers remaining on Blind in one eye, deaf in one ear, scarred by child- the job for longer periods of time, workforce mobility hood tuberculosis of the lymphatic system (known reflecting not just local but global tendencies, and as “scrofula”) and by smallpox, Johnson suffered increased recognition of the employment potential for throughout his life from what his biographer James job seekers with disabilities, effective job training Boswell termed “a horrible hypochondria,” what the strategies can be applied not only to job seekers who psychology of the period would have termed religious have a disability but also to older workers and the non- melancholy (his greatest fear was damnation) and native workforce in many countries. Job training has what would now be considered severe depression. the potential for broadly supporting access and career This inner torment was accompanied by rituals, com- development for both the emerging workforce and the pulsions, and convulsive “tics and gesticulations” that typical workforce in the coming decades. have recently been diagnosed as evidence of —William E. Kiernan and Robert L. Schalock Tourette’s syndrome but that during Johnson’s own 992———Journalism time evinced eccentricity (the stuff of eighteenth- would, in many cases, be identified by their ethnicity century English notions of individuality) rather than or disability. For example, an Atlantic Monthly article pathology. At his life’s close, Johnson survived a about the blind African American pianist and com- stroke, while suffering congestive heart failure, kid- poser Thomas Bethune in 1862 was headlined “Blind ney disease, emphysema, severe arthritis, and Tom,” which was his well-known moniker. Most “dropsy” manifested most dramatically as a hydrocele disabled people did not garner the nineteenth-century of the testis. He fought death to the last, deploring his media attention of Blind Tom, but any journalist writ- doctors’ caution in treating his dropsy and hastening ing about a person with a disability in the nineteenth his demise by self-scarification. Johnson’s embodied century or the present would rarely fail to mention a afterlife arises partly from Boswell’s devoted preser- disability, especially blindness or deafness. When Erik vation of his conversation in the Life of Johnson Weihenmayer climbed Mount Everest in 2001, every (1792), but also from his epitomization of literary journalist mentioned his blindness. authority as a paradox that united monumental style However, these reports of individual people with dis- with a singular body in ambiguous motion. abilities in the news did not mean the issues that affected them made the news. In fact, journalism’s focus on spe- —Helen Deutsch cific individuals with disabilities became the standard of See also Blind, History of the; Deaf, History of the; Depression; coverage for decades. When the disability rights move- Representations of Disability, History of. ment arose in the 1970s, activists and media researchers began questioning why journalists continued to write Further Readings primarily about individuals with disabilities, rather than Balderston, Katherine C. 1949. “Johnson’s Vile Melancholy.” the major civil rights initiatives afoot. Pp. 3–14 in The Age of Johnson, edited by F. W. Hilles and W. S. Lewis. New Haven, CT: Yale University Press. Davis, Lennard J. 2000. “Dr. Johnson, Amelia, and the Discourse RESEARCH ON REPRESENTATIONS of Disability in the Eighteenth Century.” Pp. 54–74 in IN JOURNALISM “Defects”: Engendering the Modern Body, edited by Helen Deutsch and Felicity Nussbaum. Ann Arbor: University of The concept of handicapism is germane to journalistic Michigan Press. coverage of people with disabilities. In developing the Deutsch, Helen. 2000. “The Author as Monster: The Case of concept in 1977, Robert Bogdan and Douglas Biklen Dr. Johnson.” Pp. 177–209 in “Defects”: Engendering the defined handicapism as “a set of assumptions and Modern Body, edited by Helen Deutsch and Felicity practices that promote the differential and unequal Nussbaum. Ann Arbor: University of Michigan Press. ———. 2002. “Exemplary Aberration: Samuel Johnson and the treatment of people because of apparent or assumed English Canon.” Pp. 197–210 in Disability Studies: Enabling physical, mental, or behavioral differences.” Their the Humanities, edited by Sharon L. Snyder, Brenda Jo data and impressions suggested that mass media, by Brueggemann, and Rosemarie Garland Thomson. New York: portraying prejudicial or stereotypical images of dis- Modern Language Association. abled persons, contributed to handicapism in society. Therefore, many researchers began to take seri- ously the influence of journalism on the under- ᨘ JOURNALISM standing of disability. Researchers from the areas of rehabilitation began to look at news representations. Although the political issues of people with disabili- For example, rehabilitation researcher E. Keith Byrd ties rarely made the mainstream news until the 1990s, and Timothy Elliot of Auburn University studied var- the people themselves have been in the news since ious aspects of media images of disability over the American journalism began the practice of identifying course of the 1980s. Psychologists also looked at news sources by physical characteristics. The norms of jour- images of disability. James M. Gardner and Michael nalism that developed by the early twentieth century S. Radel studied both newspapers and prime-time meant that anyone who was not white or able-bodied television coverage of disabled people in 1978 to Journalism———993 identify the major themes in coverage: dependence, and must look to the state or to society for economic independence, abuse, and deviance. support, which is considered a gift, not a right. In the Disability studies scholars paid attention to jour- supercrip model, the person with a disability is por- nalistic images of disability in the 1980s as well, espe- trayed as deviant because of “superhuman” feats (e.g., cially when major media issues arose. Douglas Biklen ocean-sailing blind man) or as “special” because they looked at the print media coverage of the 1984 Baby live regular lives “in spite of” disability (e.g., deaf Jane Doe case, in which parents and doctors fought high school student who plays softball). over the severely disabled baby’s right to live or die, Clogston’s progressive categories include the and the Elizabeth Bouvia case, in which a severely minority/civil rights model and the cultural pluralism disabled woman wanted the right to starve to death. model. In the minority/civil rights model, people with Biklen found that journalists uniformly “cast in terms disabilities are portrayed as members of the disability of tragedy, of charity and its attendant emotion, pity, community, which has legitimate political grievances. or of struggle and accomplishment.” They have civil rights that they may fight for, just like The language used in journalism to characterize other groups. Accessibility to society is a civil right. people with disabilities also has significance. In the cultural pluralism model, people with disabili- Disability studies scholar and historian Paul Longmore ties are presented as a multifaceted people and their studied the social meaning of language that referred to disabilities do not receive undue attention. They are disabled people in 1985 and found three forms. One portrayed as nondisabled people would be. form represents people solely in terms of a disability News media researcher Beth Haller used Clogston’s and are therefore medicalized and dependent. This models in her 1995 dissertation, “Disability Rights on form creates abstract nouns from adjectives (the dis- the Public Agenda: News Coverage of the Americans abled, the deaf) or borrows medical labels such as with Disabilities Act.” However, she added three mod- “suffers from.” Another form used euphemistic labels els to reflect the changes in society that came with the such as “special” or “exceptional.” And the third form 1990 Americans with Disabilities Act (ADA). In addi- refers to politicized language that allows disabled tion, Haller expanded the use of the models by recog- people to create their own identity. nizing that more than one model may be present in a More mass communication scholars turned their story. This was especially appropriate in news stories attention to journalism and disability topics in the about the ADA, in which government, business, and 1990s. The preeminent scholar in this area was John disability rights sources came together. Clogston, a former radio journalist who was a wheel- Haller’s added traditional category model was the chair user. He wrote his dissertation at Michigan State business model, in which people with disabilities and University, “Reporters’Attitudes toward and Newspaper their issues are presented as costly to society and busi- Coverage of Persons with Disabilities.” In 1990, nesses especially. Making society accessible for Advocado Press, the publisher of The Disability Rag, disabled people is not really worth the cost and over- published Clogston’s content analysis of the coverage of burdens businesses; in other words, accessibility is not disability topics in more than a dozen major U.S. news- profitable. The two added progressive models were papers. Through his research, he developed five models the legal model and consumer model. In the legal of news media representation of disability, which fit into model, the media explain that it is illegal to treat dis- either a traditional or progressive category. abled people in certain ways. The ADA and other laws Clogston’s traditional categories include the med- are presented as legal tools to halt discrimination. In ical model, the social pathology model, and the super- the consumer model, people with disabilities are crip model. In the medical model, disability is presented shown to represent an untapped consumer group. as an illness or malfunction. Persons who are disabled Making society accessible could be profitable to busi- are shown as dependent on health professionals for nesses and society in general, because if disabled people cures or maintenance. In the social pathology model, have access to jobs, they will have more disposable people with disabilities are presented as disadvantaged income and less need for government assistance. 994———Journalism

These models created a systematic way to study because they allow them to debate the societal issues and categorize representations of people with disabil- related to them that rarely make the mainstream press. ities in journalism. Clogston was also instrumental in Charlie Winston, who tracks the disability press developing the Media and Disability Interest Group as annually in America’s Telability Media guide, esti- part of the Association for Education in Journalism mated that in the late 1990s at least 1,200 mass media and Mass Communication (AEJMC), which is the resources for the disability community in the form major academic organization for journalism scholars. of magazines, newspapers, newsletters, radio/TV Another founding member of the interest group and programs, and recurring newspaper columns existed. important journalism and disability scholar is Jack Winston said the disability media range from an indi- Nelson. He gathered together media scholars and vidual creating a two- to four-page newsletter at a very edited a 1994 book looking at many aspects of the low cost to a glossy, four-color magazine such as topic in The Disabled, the Media, and the Information New Mobility (telephone interview by author with C. Age. This was the first solely news media/disability- Winston, March 26, 1999). research focused book in the United States, although Lillie Ransom, in her 1996 dissertation on disabil- in 1987 Alan Gartner and Tom Joe edited a scholarly ity publications, identified three main patterns among collection called Images of the Disabled, Disabling the publications: activist/political, mainstreaming/ Images, which included some chapters on news and assimilationist, and special interest. She said that a disability. A British study of disability images on TV, publication such as The Ragged Edge is embedded both fiction and nonfiction, resulted in a book in 1992. within the disability rights social movement, making Guy Cumberbatch and Ralph Negrine’s (1992) it an activist/political model publication; The Arc and Images of Disability on Television found themes in the Dove, a publication for the ARC of Maryland, news programs such as fitting into normal life, the fits within the mainstreaming/assimilationist model physical progress of a person with a disability, the because they want people with mental retardation to lack of understanding by society/individuals, and be accepted in the mainstream community; and a fighting for civil rights. publication such as The National Amputee Golfer is described as a special interest model. However, what- JOURNALISM FROM ever their pattern, each publication has the common- THE DISABILITY COMMUNITY ality of serving people who are “outsiders” and who face societal barriers due to physical or mental differ- All this research over the years confirmed that news ence. Disability journalist Douglas Lathrop explained media do a mediocre job of covering people with dis- that these disability publications reflect that people abilities and their issues. Because mainstream media with disabilities think of themselves as a community. presented stereotypes or no information at all, many In addition to giving a voice to the entire commu- disability groups created their own journalism. Many nity of Americans with disabilities, disability journal- disability publications have a long history in the ism gives apt examples that people with disabilities United States; for example, one that has been ongoing are a multifaceted community. Because different dis- since 1907 is The Matilda Ziegler Magazine for the abilities make for different societal barriers, publica- Blind Braille publication. tions based on specific disabilities arose. For example, Like ethnic publications or the alternative press, the the U.S. deaf community has a long tradition of its disability publications react to the same kind of exclu- own journalism. The North Carolina School for the sion and stigmatization that other outsider groups Deaf began the first publication for deaf persons in have experienced. Disability publications allow 1848 with its school newspaper, The Deaf Mute. Other people to pull themselves together as a community disability-related publications continued a tradition of with similar goals and aspirations. As Erving Goffman fostering solidarity within the different subcultures of (1963) suggested in Stigma, people with a stigmatized the disability community. After World War II, soldiers status in society develop their own publications who had been disabled in war came home, which led Journalism———995 to the Paralyzed Veterans of America’s development rights history and laws, ethical considerations, and of the magazine Paraplegia News, in 1946. examples of good reporting on disability topics. In terms of disability rights–focused journalism, Several journalists who contributed to the manual disability publications such as The Ragged Edge, went on to write important books about disability Mainstream, and Mouth helped fuel the disability rights, which included information about news media community’s civil rights agenda. Mainstream maga- coverage. In 1993, Joseph Shapiro of U.S. News & zine began in 1975. (Its print publication ceased World Report wrote No Pity: People with Disabilities in 1999.) The precursor to The Ragged Edge, The Forging a New Civil Rights Movement, considered one Disability Rag, started in 1980. Mouth began in 1990. of the best journalistic books on the disability rights Lucy Gwin, the editor of Mouth, explained: “Nobody movement. Tari Susan Hartman and Mary Johnson [in the mainstream media] is going to cover the dis- wrote a book called Making News in 1993 that pro- ability-rights movement, so we’re just going to have vided a guide to activists on how to get news coverage to cover it our own damn selves.” of disability rights issues. Johnson then deconstructed backlash against the ADA in her 2003 book, Make EFFORTS TOWARD Them Go Away: Clint Eastwood, Christopher Reeve BETTER JOURNALISM and the Case against Disability Rights. Associations of journalists gained awareness of A few people still believed that mainstream journal- their flaws when reporting on disability issues by ism could change its coverage patterns and do a better 1990. The American Society of Newspaper Editors job of reporting on disability issues. They also real- formed its Disabilities Committee and in 1990 ized that most Americans get their information from published a booklet, Reporting on People with mainstream news media and that they could have sig- Disabilities. Bill Beisky, the editor of the Cape Cod nificant influence on the general public’s perception Times and the father of a daughter with a disability, of disability rights. In 1988, the U.S. government tried instigated the development of the booklet. The book- to foment this change. The National Institute on let makes some suggestions on reporting issues but Disability and Rehabilitation Research (NIDRR) was primarily a language guide on the preferred funded a national workshop on news media and dis- terminology when referring to disability topics. In a ability issues. A workshop organizer said the reason similar effort, the Research and Training Center on behind the project was that “recent news articles and Independent Living at the University of Kansas also features have tended to divide disabled individuals released a terminology guide in 1990, Guidelines for into two categories: the poor pathetic creature of char- Reporting and Writing about People with Disabilities. ity or the heroic, undefeatable ‘super crip.’” The guide is now in its sixth edition. To pursue simi- Another government-funded project to improve lar efforts at journalism education, freelance photog- journalism on disability topics was produced in 1989 rapher Suzanne Levine developed the National Center by the Advocado Press. Edited by Mary Johnson, The on Disability and Journalism (NCDJ) in 1998. NCDJ Disability Rag editor, and Susan Elkins, the publica- created an online style guide about disability terms, as tions coordinator for the Research and Training well as posting tip sheets on topics such as interview- Center on Independent Living at the University of ing people with disabilities and developing curricu- Kansas, the manual, Reporting on Disability: lum for teaching about disability in the college Approaches & Issues, drew together contributions journalism classroom. from activists, ethicists, writers, and broadcasters, all In 1993, the Freedom Forum Media Studies of whom had experience covering disability issues. Center at Columbia University also addressed the Intended for use with journalism students, the manual news media’s problematic reporting on disability in A gave guidance on reporting issues specific to disability Parallel and Imperfect Universe: The Media and topics, how to find new and less stereotypical angles People with Disabilities (Gazsi 1993). The Society of in covering disability, information about disability Professional Journalists (SPJ) began acknowledging 996———Journalism the need for better coverage of disability issues as Cumberbatch, G. and R. Negrine. 1992. Images of Disability on well. Its society magazine, The Quill, had been pub- Television. London: Routledge. lishing occasional articles about the topic since the Davis, R. H. 1862. “Blind Tom.” Atlantic Monthly, November, pp. 580–585. 1980s when Laura Rensom Mitchell wrote “Beyond Elliott, T. and E. K. Byrd. 1982. “Media and Disability.” the Supercrip Syndrome.” By 2002, SPJ developed Rehabilitation Literature, 43(11–12, November-December): an online searchable Rainbow Sourcebook, which 348–351. included sources on disability issues. ———. 1983. “Attitude Change toward Disability through In the late 1990s, NIDRR again identified the need Television Portrayal.” Journal of Applied Rehabilitation to better educate the public about disability issues Counseling 14(2): 35–37. ———. 1984. “Attitude Change toward Disability through through the mainstream media. It funded the San Television: Portrayal with Male College Students.” Diego–based Center for an Accessible Society, run by International Journal of Rehabilitation Research 7(3): the former publisher and editor of Mainstream maga- 320–322. zine, Cyndi Jones and William Stothers, and Mary Gardner, J. M. and M. S. Radel. 1978. “Portrait of the Disabled Johnson of The Ragged Edge. Its charge is to get infor- in the Media.” Journal of Community Psychology 6(3): mation about disability topics and independent living 269–274. Gazsi, S. 1993. A Parallel and Imperfect Universe: The Media and out to the general public. It does this by creating an People with Disabilities. New York: Freedom Forum Media online resource guide for journalists on a myriad of Studies Center. disability topics and by providing sources on disability Goffman, E. 1963. Stigma. Englewood Cliffs, NJ: Prentice Hall. issues for journalists. It also funds research to track Haller, B. 1993. “Paternalism and Protest; The Presentation of major news media coverage of disability topics. Deaf Persons in the Washington Post and New York Times, 1986–1990.” Mass Comm Review 20(3/4): 169–179. —Beth A. Haller ———. 1995a. “Disability Rights on the Public Agenda: News Media Coverage of the Americans with Disabilities Act.” See also Cripple; Disability Culture; Handicap; Language of Unpublished doctoral dissertation, Temple University, Disability; National Institute on Disability and Rehabilitation Philadelphia. Research (NIDRR) (United States). ———. 1995b, Spring. “Rethinking Models of Media Representation of Disability.” Disability Studies Quarterly 15(2). Further Readings ———. 1998. “Crawling toward Civil Rights: News Media American Society of Newspaper Editors. 1990. Reporting on Coverage of Disability Activism.” In Cultural Diversity and People with Disabilities. Washington, DC: American Society the U.S. Media, edited by Y. R. Kamalipour and Theresa of Newspaper Editors. Carilli. New York: SUNY Press. Biklen, D. 1987. “Framed: Print Journalism’s Treatment of ———. 1999. “How the News Frames Disability: Print Media Disability Issues.” In Images of the Disabled, Disabling Coverage of the Americans with Disabilities Act.” Research Images, edited by A. Gartner and T. Joe. New York: Praeger. in Social Science and Disability, Vol. 1. Greenwich, CT: JAI. Bogdan, R. and D. Biklen. 1977. “Handicapism.” Social Policy ———. 2000. “Content & Character: Disability Publications in 7:14–19. the Late 1990s.” Journal of Magazine and New Media Byrd, E. K. 1979. “Magazine Articles and Disability.” American Research 2(1). Rehabilitation 4(4): 18–20. Hartman, T. S. and M. Johnson. 1993. Making News: How to Get ———. 1988. “Theory Regarding Attitudes and How They May News Coverage for Disability Rights Issues. Louisville, KY: Relate to Media Portrayals of Disability.” Journal of Applied Advocado Press. Rehabilitation Counseling 20(4): 36–38. Johnson, M. 2003. Make Them Go Away: Clint Eastwood, Clogston, J. S. 1990. Disability Coverage in 16 Newspapers. Christopher Reeve and the Case against Disability Rights. Louisville, KY: Advocado Press. Louisville, KY: Advocado Press. ———. 1991. “Reporters’ Attitudes toward and Newspaper Johnson, M. and S. Elkins, eds. 1989. Reporting on Disability: Coverage of Persons with Disabilities.” Unpublished Approaches & Issues. Louisville, KY: Advocado Press. doctoral dissertation, Michigan State University. Lathrop, D. 1995. “Challenging Perceptions.” Quill, July/August, Covington, G. A. 1988, November. “The Stereotypes, the Myths p. 37. and the Media.” Pp. 1–2 in The News Media and Disability. Longmore, P. K. 1985. “A Note on Language and Social Identity Washington, DC: News Media Education Project/A National of Disabled People.” American Behavioral Scientist 28(3): Workshop. 419–423. Judaism———997

Mitchell, L. R. 1989. “Beyond the Supercrip Syndrome.” Quill, Jewish life, the nature of these references must be pp. 18–23. considered. Much of Talmud is utopian/idealistic. National Center on Disability and Journalism. 2002. “Style Guide Largely composed of religious case law, its admoni- for News Media.” Retrieved September 16, 2003 (www.ncdj. org/styleguide.html). tions may more reflect common transgressions than Nelson, J., ed. 1994. The Disabled, the Media, and the common practice. In addition, disabilities are often Information Age. Westport, CT: Greenwood. used hypothetically to illustrate extremes in test cases. Ransom, L. S. 1996. “Disability Magazine and Newsletter Judaism prior to the destruction of the Second Editors: Perceptions of the Disability Press, Community, Temple and the first state of Israel (70 CE) was rooted Advocacy, Mainstreaming and Diversity.” Ph.D. dissertation, in the priestly Temple cult and sacrificial rite. The University of Maryland, College Park. Research and Training Center on Independent Living. 1990. “perfect priest” required physical “blemishlessness” to Guidelines for Reporting and Writing about People with withstand the ardors of animal sacrifice in God’s pres- Disabilities. Lawrence, KS: Research and Training Center on ence within the temple. The priest represented an Independent Living. archetypal ideal rather than a norm, a far higher stan- Shapiro, J. 1993. No Pity: People with Disabilities Forging a New dard than mere able-bodiedness. Although restoration Civil Rights Movement. New York: Random House. of the temple and priesthood remains an idée fixe in Society of Professional Journalists. 2003. “Rainbow Sourcebook.” Retrieved September 16, 2003 (http://www.spj.org/diversity_ Judaism, the diaspora’s practical archetype became the search.asp). sage (the professional rabbinate emerged only later). Telability Media. 1998. “Winston Publishes Media Directory.” The precarious nature of diaspora—metaphorically, a America’s Telability Media 7:1. disabled Israel—idealized intellectual attainment Van Cleve, J. and B. Crouch. 1989. A Place of Their Own. through Torah study, rather than physical perfection. Washington, DC: Gallaudet University Press. Throughout and beyond the era of Bavli (the definitive Websites Babylonian Talmud, fifth–seventh century CE) impair- ments become progressively better understood and Center for an Accessible Society, www.accessiblesociety.org accepted, if only incrementally until recent times. Disability World, international web-zine, http://www.disability world.org/ A culture that idealizes intellectual discourse Inclusion Daily Express, a disability news wire, http://www would naturally regard cognitive/communication .inclusiondaily.com/ impairments as most disabling. The Talmud subsumes Media and Disability Interest Group of the Association for these in the category cheresh, shoteh v’katan: Education in Journalism and Mass Communication, deaf/mute persons, mentally ill/mentally disabled www.media-disability.net persons, and children. More than earlier Scriptures, National Center on Disability and Journalism, www.ncdj.org The Ragged Edge, online magazine, http://www.ragged-edge- Bavli recognizes nonverbal communication by the mag.com/ deaf/mute, the intermittency of some mental illness, Research and Training Center on Independent Living, http://www. and practical attainments of the developmentally dis- rtcil.org/ abled and maturing children. Thus, correspondingly, it advocates, within limits, greater rights and responsi- bilities for these groups. Judaism has never sanctioned ᨘ JUDAISM infanticide. With cognition and communication so privileged, Central to Jewish disability issues is Scripture mobility impairments are of little concern in Jewish Tanach (Old Testament) and its interpretation, Talmud law. Blindness is regarded as a disability only in a few (oral law). Collectively, these (and later commentaries) contingencies. Several Talmudic sages were blind, are known/studied as Torah. References to numerous including Rabbi Yosef, whose advocacy of rights and impairments abound, often conflated with other responsibilities for the blind is considered definitive. conditions including, most notably, childhood. With Still, disability is sometimes regarded as God’s pun- Scripture, especially Talmud (the first diasporic ishment, though also, as in Buddhism, an opportunity literature), virtually the only record of ancient everyday for atonement and even a conduit for prophecy. 998———Jukes, The

Contemporary Judaism has virtually abolished 1883. Departing from his insistence on the interrela- the category cheresh; deaf/mute persons are no longer tionship between the environment and heredity, this consider insensate. There are deaf synagogues, a deaf audience appropriated the story of the Juke family seminary, and deaf Jewish community centers. Israeli to argue for the immutability of heredity. From 1883 Sign Language is very similar to Palestinian Sign to the 1920s, North American social welfare officials Language. Since 1992, Vertigo, an Israeli mixed-ability portrayed many poor, and often rural and white, dance company, has toured worldwide. families like the Jukes as hopelessly degenerate, Anti-Semitism is often expressed in a discourse victims of their ancestral vices and ignorance. For this of pathology and defect. In the context of nineteenth- reason, the story of the Jukes became a precursor and twentieth-century Western racism and eugenics, of the eugenics movement in the United States and the Nazis implemented genocidal programs against Western Europe. Jews, people with disabilities, and others including —James W. Trent Sinti/Roma (“Gypsies”) and gays and lesbians. —Alex J. Lubet See also Degeneration; Eugenics; Normality.

See also Deaf, History of the; Religion. Further Reading Carlson, Elof A. 1980. “R. L. Dugdale and the Juke Family: Further Readings A Historical Injustice Corrected.” Bioscience 30:535–539. Abrams, Judith Z. 1998. Judaism and Disability. Washington, DC: Dugdale, Richard L. 1877. The Jukes, a Study in Crime, Gallaudet University Press. Pauperism, Disease, and Heredity. New York: Putnam’s. Weiner, Marc A. 1997. Richard Wagner and the Anti-Semitic Hahn, Nichole F. [Nicole H. Rafter]. 1980. “Too Dumb to Know Imagination. Lincoln: University of Nebraska Press. Better: Cacogenic Family Studies and the Criminology of Women.” Criminology 18:3-25. Ryan, Patrick. 1999. “Dugdale, Richard Louis.” Pp. 25–26 in American National Biography, Vol. 7. New York: Oxford ᨘ JUKES, THE University Press.

The first of many editions of Richard L. Dugdale’s The Jukes, a Study in Crime, Pauperism, Disease, and ᨘ JUSTICE Heredity appeared in 1877. The book told the story of five generations of poverty, crime, and disability in Theories of justice are, in part, about what people are the Jukes family, the fictitious name of a real family. entitled to—as members of a political community, or Departing from the dominant antebellum claim that more controversially, merely as human beings. These heredity represented capricious degeneration, theories differ in what they regard people as entitled Dugdale held that hereditary disabilities followed to: fair play, respect, a minimum or an equal share of intergenerational patterns. Thus, alcoholism would material resources, access to the various goods of life, not necessarily produce so-called insanity or feeble- psychological satisfaction, and recompense or redress mindedness in later “skipped” generations, but it might for past wrongs by others or punishment for one’s well produce more alcoholism in the next generation, own wrongs. These entitlements are not mutually and with alcoholism came poverty. exclusive, of course, but theories of justice differ in Dugdale also stressed a relationship between the importance or emphasis they place on them. For heredity and the environment. Juke family members example, concerns about appropriate and proportion- who lived in healthy surroundings were less likely to ate punishment are often seen as matters of corrective be paupers than were family members who lived in justice; appropriate resources, access, or satisfaction unhealthy environments. Drawing the attention of the as matters of distributive, patterned, or end-state jus- emerging “scientific charities” movement, the book tice; and fair play and respect as matters of procedural reached its largest audience after Dugdale’s death in or relational justice. The lines between and relationships Justice———999 among these different types of justice are vague RELEVANCE OF IMPAIRMENT and disputed. But more important, there is strong TO JUSTICE disagreement about what people are entitled to under all three rubrics. Most societies make provisions for persons with These distinctions among types of justice are disabilities. Medical, rehabilitative, educative, and other well illustrated by the claims of people with disabili- resources are provided to cure or treat health condi- ties, claims that figure significantly in contemporary tions or improve functional capacities. Social assis- disputes about justice. For example, many disability tance, pensions, workers’ compensation, and other advocates have questioned the claim of recent forms of income supplements attempt to compensate theories of distributive justice that people with dis- people with disabilities for their inability to work. abilities have strong entitlement to the resources Antidiscrimination laws seek to redress intended or needed to correct their impairments. Without reject- unintended denials of equal opportunity associated ing such entitlements altogether, advocates regard with misperceptions, stereotypes, and the stigma of them as unduly influenced by a medical model, disability. These and other laws require public accom- which sees disability exclusively in terms of biologi- modations, employment and education settings, and cal impairment or dysfunction. Drawing on an inter- communications and transportation services to be active model of disability, they stress the need for accessible. Yet other laws and programs directly pro- resources to accommodate disabilities, to make the vide assistive technology and educational and employ- built environment accessible to people with disabili- ment opportunities to raise the level of economic and ties. And because most societies have failed to make political participation by people with disabilities. such accommodations, disability advocates often Some laws view impairments as functional deficits insist that people with disabilities are entitled to resti- that get in the way of the person’s social participation; tution or compensation for past exclusion. Finally, others emphasize the social stigma of impairments and some disability advocates have seen the focus on dis- the obstacles that that creates for people with disabili- tribution as misplaced: What disadvantages people ties. As functional deficits, impairments create needs with impairments is largely their stigmatization not for services, resources, and accommodations. When their impairments. On this view, the primary goal of laws and policies address these needs, the underlying justice should be to eliminate that stigma and the rationale is distributive justice: Impairments negatively social exclusion accompanying it; the redress of affect social participation, so justice requires that these material disadvantages will follow. disadvantages be ameliorated as much as possible. For all these critiques, one of the challenges facing Laws that focus on the social stigma of impairments contemporary theories of justice in relation to disabil- view lack of participation in basic areas of social life ity is to avoid the strictures of the medical model; as harms inflicted on people with disabilities either to see disabilities in interactive terms and to find jus- through prejudice, misunderstanding, or neglect. On tice and injustice in the terms of that interaction. the face of it, the underlying rationale is compensatory, Unfortunately, the recent debate among competing namely, to undo the damage to people with disabilities theories of justice has tended to reinforce the medical caused by individuals or, systematically, through exist- model, by assuming that the justice claims of people ing social institutions. with disabilities are not only medical and rehabilita- Since impairments are relevant to social justice tive but virtually inexhaustible, and by assuming that in two different ways—as functional deficits and as significant impairments preclude a high quality of life. social markers—there is potential for confusion about In reviewing these theories, this entry points out their the appropriate objectives of laws and regulations. A reliance on such dubious assumptions and then sug- law requiring public schools to allocate resources to gests ways in which those theories have been, or could accommodate the specific requirements of children be, modified and strengthened in response to the dis- with disabilities should be viewed as responding to a ability critique. demand of distributive justice (e.g., that all children 1000———Justice should benefit from the educational experience). If or compensatory justice. It is difficult to distinguish we treat it as a compensatory law, then it is vulnerable the disadvantages “naturally” associated with impair- to the plausible objection that most needs of most ments from those created by the attitudes and behav- disabled children are not harms that any individual iors of others, or social arrangements generally. It or institution has caused. On the other hand, an anti- should therefore not matter much if we view accom- discrimination law such as the Americans with modation and retrofitting as conferring on people Disabilities Act of 1990 (ADA) cannot be easily justi- with disabilities the resources they are entitled to as a fied as a tool for securing distributive justice, since it matter of distributive justice, treating them with the exempts individuals and institutions from making rea- respect due to them as equal members of the commu- sonably accommodations for people with disabilities nity, or compensating them for having failed to do if doing so would impose an “undue burden” or “hard- what distributive or procedural justice requires. ship” and it does not require the state to assume that Of course, neither accommodation nor compensa- burden, however reasonable the accommodation. But tion will be thought to be owed if one denies that the it is also difficult to see the ADA strictly as demand- state has any obligation to achieve a particular distrib- ing procedural justice, because it does require that ution of resources or opportunities, if one regards dis- individuals and institutions sometimes incur substan- advantages associated with impairments as “natural,” tial (although not undue) costs for reasonable accom- and if one insists that the only procedural or relational modations, a material burden that has no obvious obligations we owe, in the absence of special relation- counterpart in most other antidiscrimination laws. ships, are honesty, trustworthiness, and conformity to A more plausible stance to take here is that impair- jointly accepted rules. But most people reject such a ments are relevant to justice in several ways: For the minimalist view of distributive and procedural obliga- sake of justice, we need to acknowledge that people tions, and a generation of disability scholarship has differ with respect to their repertoire of functional made it clear that many of the disadvantages associ- capacities, and so differ in what material and social ated with impairments cannot be regarded as natural. provisions they require to fully participate in society. But the rejection of minimalist views leaves room for We also need to recognize that impairments are disagreement about the character and extent of the fraught with social meaning, most of which is disad- entitlements that people with disabilities can claim. vantageous to people with disabilities, and that the Much of the philosophical activity in this area has harms that are caused—either intentionally or not— been in the domain of “patterned” distributive justice, need to be addressed for the sake of justice. In some in particular, in the explication of the kinds of equal- instances, it must be said, disability raises justice con- ity, or constraints on inequality, that distributive jus- cerns that appear to move among compensation, dis- tice should seek. Because distributive theories have tribution, and respect: If public buildings are not been the most fully developed, and the most fre- accessible to a person with a mobility problem, one quently criticized by disability scholars and others, might argue that the failure to retrofit the building is especially feminists, this entry focuses next on those discriminatory, in failing to treat people with mobility theories and their treatment of disability. The entry impairments as potential users or residents of that then assesses the challenges they face and the ade- building. And such a slight may require compensa- quacy of alternative and hybrid approaches in meeting tion. But one could also argue that the benefits of those challenges. access to public buildings must be distributed, as fairly across the public as possible, and so excluding THEORIES OF DISTRIBUTIVE JUSTICE this individual is distributively unjust. One might contend that if justice demands a Despite the obvious relevance of impairment to jus- response to unfair disadvantages associated with tice, recent theories of justice have by and large alter- impairments, it does not matter whether that response nated between a benign neglect, tabling provisions for is understood in terms of procedural, distributive, the impaired until a just “basic structure” for society Justice———1001 has been established, and an oppressive solicitude, and skill, but justice only requires fair equality of treating people with impairments as having a greater opportunity, namely, the equalization of opportunity claim to restoration of normal functioning than the for persons with similar skills and talents. claims of “normal” members of society have to mate- Many critics, including disability scholars, have rial resources. As Martha Nussbaum has pointed out contended that Daniels’s augmentation of Rawls in an important critique, the neglect or postponement requires excessive and inappropriate redistribution of justice for people with impairments by the leading of resources to people with lower functioning at the political philosopher of the past century—John expense of people with limited talents and skills, who Rawls—arises from three factors of continuing rele- may well experience greater social disadvantage. They vance for justice and disability. One is the basic “con- dispute the centrality that Daniels accords to normal tractarian” character of Rawls’s theory of justice, in functioning for fair equality of opportunity, and the which justice is derived from the agreement reached priority he assigns to its achievement or restoration. by self-interested bargainers ignorant of their position They suggest that his exaggerated premium on normal in society or conception of the good life. Although the functioning reflects his uncritical acceptance of a med- stipulated ignorance secures a kind of moral objectiv- ical model of disability, and his resulting neglect of the ity to the contract, the objective remains individual social contribution to disability. benefit, and people with impairments, assumed to be Another influential philosopher offering a quasi- less productive or costly to accommodate, tend to be contractarian theory of justice, Ronald Dworkin, does excluded as unattractive bargaining partners. The sec- recognize that social preferences and practices play ond factor is the theory’s need for a simple metric of some role in the creation of disability, but his response comparative advantage—deficits in physical or men- may be even less appropriate than Daniels’s. Unlike tal function do not fit easily beside wealth and income Rawls, Dworkin simply stipulates that the members in a single, summary metric of well-being. Third, and of society are entitled at the outset to an equal share particularly relevant to cognitive impairment, the bar- of the world’s resources, but he does not believe that gainers are assumed to be rational. People who cannot this entitlement can extend to individuals’ highly vari- engage in practical reasoning, let alone elaborate cal- able “internal” resources—functionings and talents. culations of expected utility, do not have a place at the Dworkin attempts to deal with the “brute bad luck” of bargaining table. poor internal resources—impairments as well as lim- Other philosophers have attempted to accommo- ited, obsolete, or undesirable talents—by relying on a date people with disabilities within a Rawlsian, or hypothetical insurance scheme. We are to imagine what more broadly contractarian, framework. The most people, ignorant of what opportunities they might want well-known, and controversial, effort has been made to pursue in life, would be willing to pay by way of by Norman Daniels. Rather than ignoring people with insurance against the prospect of acquiring a disability. impairments or tabling their claims, Daniels makes If we could reach a social consensus on what would the correction of impairments a matter of utmost provide fair compensation for blindness, immobility, urgency by insisting that claims to the restoration of or cognitive deficit, then that would be an objective normal functioning are stronger than even those of the measure of the cost of relevant resources that the state economically worst-off members of society. Arguing should, in justice, provide people with disabilities. The that normal human functions are essential to equality hypothetical insurance buyer is willing to insure against of opportunity, Daniels gives priority to health care deafness or blindness, not because he believes that and other impairment-correcting resources. A person these conditions directly lower his quality of life but with disabilities on his view has a special claim on because they would be impediments to life plans he society if his or her level of functioning falls short would have likely had, given the social environment in of the normal range (as determined biostatistically). which it is reasonable to expect he will find himself. Impairments directly reduce the range of opportuni- Central to Dworkin’s approach is the recognition ties open to a person. So too do deficits in talent that the social impact of disabilities is not identical to 1002———Justice the functional impact of impairments: The extent to Sen’s approach is well suited to account for what which an impairment limits one’s equality of opportu- disability scholars argue are the true disadvantages nity depends on the physical, social, and attitudinal associated with disability. A limitation of function- environmental in which the individual with that ing in Sen’s sense is either the incapacity caused by impairment lives. Although this is an important impairments or, more often, the barriers imposed by insight from a disability perspective, Dworkin blunts features of the person’s world that aggravate the inca- its impact by assuming that we can generalize about pacity or otherwise restrict the person’s freedom to the overall impact of impairments in any social envi- achieve his or her life plans. When both the impair- ronment. More important, he implicitly ignores the ment and the social environment contribute to the dis- effects of systemic accommodation and environmen- advantage, justice requires both impairment-relevant tal modification. The price the hypothetical insurer resources and public policy and social action to thinks is prudent is based on the need for individual remove the environmental obstacles. Justice requires, material resources to deal with an utterly hostile and in short, equalization of capabilities. unaccommodating social environment. In short, while Achieving justice in this sense would not be with- Dworkin recognizes the environmental cause of the out practical difficulties. Even if we agreed on what disadvantages of disabilities, his scheme for a “just” capabilities were critical and what level of each capa- solution involves no more than paying people with bility had to be reached—matters on which Sen is disabilities to live in a disability-unfriendly world. deliberately silent—it would not be an easy matter to It might be suggested that the underlying difficulties identify all the barriers to achieving them or ascer- with Dworkin’s account can be traced to the fact that it taining what would effectively remove or circumvent relies on material resources as a metric of advantage, them. Yet we are now in the territory of public policy, measuring outcomes and compensating shortfalls by where these practical issues are at least well-known. money. Dworkin favors resources over welfare, prefer- There are, moreover, several potential policy tools that ring a more objective metric over a subjective one, can be brought to bear: cash by way of compensation such as feelings of pleasure or satisfaction. A resource or income maintenance; tax adjustments; in-kind metric would not punish those with low expectations services; provision of employment and educational and modest tastes nor reward those with high expecta- opportunities; provision of assistive technology and tions and extravagant tastes. Several philosophers have other impairment-relevant resources; antidiscrimina- argued, however, that it is possible to have a metric tion law to address specific abuses; mandated, pub- of advantage based on capabilities, which are as objec- licly funded accommodations for work, school, and tive as material resources but more sensitive to the home; and public education to remove stigma and multivalued character of well-being. The economist stereotyping. There are legal models for each of these Amartya Sen and the philosopher Martha Nussbaum strategies in most developed countries. have proposed accounts of the goal of distributive jus- But once one moves to this practical level, some tice in terms of equality of capability. troubling features of Sen’s approach come into view. Sen (1980:217) defines functionings as the things Does justice require equality of capability across and activities that people have a realistic choice among the board, and for everyone? Does every measurable in their lives. A functioning is more than a physical or decrement of capability entitle one to resources in the mental capability (and so more than the mere absence name of justice, or is there a minimal core of capabil- of an impairment). It also includes all of the social, ities relevant to justice? If so, what is this core, and physical, and attitudinal features of the person’s envi- must it be the same for everyone? These are huge ronment that are preconditions to the realization of a questions. Even if we could agree on the core, it is choice. A capability, then, is a set of functionings over extremely unlikely that anyone, across a lifespan, which a person has a choice. In general, the complete would possess complete capability in all its domains. set of a person’s capabilities describes his or her “pos- Impairments are ubiquitous across the population; itive” freedom over alternative ways of living. almost everyone develops joint aches, muscle fatigue, Justice———1003 and diminished vision, hearing, and memory as they there remain difficult and practically significant issues age. Each of these impaired functionings, in unac- arising out of the interaction between justice and dis- commodating settings, may limit some core capabil- ability with which future theories will need to deal. ity. If we think it absurd that everyone should qualify for disability benefits, how do we set the thresholds? How much inequality in capability can we tolerate? CHALLENGES TO Some of these questions have been addressed DISTRIBUTIVE JUSTICE THEORIES in a forthright—if not always satisfactory—way, by Accounts of distributive justice are a target of disabil- Martha Nussbaum, who is specific and concrete, ity critics who see them as inherently demeaning. This where Sen is vague and schematic, about the capabil- change is apt for contractarian theories that exclude ities required for humanity and human flourishing. people with disabilities from the bargaining table alto- She has come up with a list of 10 capabilities that a gether because of their presumed low productively or just society must ensure its members achieve, at least lack of capacity to form a conception of the good life. to a minimal degree. Over the years, her description of We need not consider this critique further. But dis- these capabilities has become more general, in part ability scholars have also criticized theories that are because the more narrowly framed they are, the more not contractarian and aim directly at equality, vari- categorically they are precluded by specific impair- ously conceived. Equality theories are also seen as ments. Thus, Nussbaum has gone from making “the demeaning insofar as they treat disabilities as individ- exercise of the five senses” a requirement of humanity— ual deficits that require special resources to achieve which would deny the blind and deaf the status of equality, rather than disadvantages resulting from human beings—to making it a condition of human unjust social arrangements. This critique raises more flourishing—which would deny that the blind or deaf serious doubts about distributive approaches, even can flourish—to broadening the capability to encom- those that pay lip service to the interactive character of pass rich sensory experience from any combination of disability. Can distributive justice theory adequately sensory modalities—which makes human flourishing accommodate the radical changes in attitudes, prac- available to the blind and deaf and imposes the oblig- tices, and environment that justice truly requires? ation on a just society to ensure that they achieve it. The disability critique tends to favor more proce- Yet every society will contain individuals whose dural or relational approaches, which identify stigma- impairments make the achievement of one or more tization, exclusion, and oppression as the primary core capabilities, however broadly framed, a practical sources of injustice and insist on policies aimed impossibility. As Nussbaum recognizes, many severely directly at those evils. This critique has also inspired retarded individuals, or individuals in permanent comas some mainstream political philosophers to develop or persistent vegetative states, simply cannot fashion hybrid approaches, which acknowledge the diagnosis their own conception of the good life, no matter how offered by the critique but propose a constrained dis- intensive the support they receive from society. tributive treatment for the underlying injustice. The Nussbaum does not regard a society as unjust for failing specific challenges of the disability critique require such individuals; rather, she regards their incapacity as separate treatment. “tragic.” This survey of how disability figures in some prominent theories of distributive justice indicates the Social Basis for the Disadvantages of Disability beginnings of a more serious attempt to come to terms The first challenge has been mentioned several with disability, without identifying it with impairments times already: Philosophers writing on justice from a or treating it exclusively as a matter of health. roughly egalitarian basis often assume that impair- Increasingly, philosophers are becoming aware of the ments intrinsically, and dramatically, reduce subjec- more robust models of disability and their effect on tive or objective well-being by limiting basic activities traditional arguments about the demands of justice. Yet such as walking, seeing, communicating, activities 1004———Justice essential to most life plans. The problem posed by problem is that most theories share an assumption that disability, as a result, has been to find “special mea- has historically held an iron grip on disability policy, sures” to compensate for functional deficit, whether by namely, that it is always cheaper, more efficient, and Dworkin’s hypothetical insurance, Daniels’s unlimited publicly acceptable to provide resources to individu- resource transfer to restore normal functioning, or als than to modify the physical or social environment Sen’s equalization of capability. Philosophers writing in which they live. from the disability perspective, such as Anita Silvers, The assumption ignores the fact that privileging the argue that this obsessive concern with the comparative “standard environment” in this way means that dis- well-being of people with disabilities is not only ability policy will always be piecemeal and ad hoc, a demeaning—since it tends to view people with impair- “special needs” policy that confirms the prejudice that ments as defective rather than neglected—but that it people with disabilities are inferior and cannot make also ignores the sources of inequality faced by people it in the “real world.” On the other hand, however, with disabilities, namely, the disadvantages caused by opening up the range of interventions for distributive unaccommodating, stigmatizing, and discriminatory justice to include changes to the environment is not social arrangements. without theoretical and practical difficulty. First, the Although this critique has considerable merit, it is standard physical, social, and attitudinal environment unlikely that it goes to the heart of the overall project is disadvantageous to many people in society other of “patterned” distributive justice—to identify some than those with impairments. People who are poor arrangement of welfare, resources, opportunities, or cannot take advantage of financial opportunities or whatever that can serve as the goal of redistributive savings that are readily available to the rich; people policies. On the face of it, one need only identify the who do not speak the official languages of a country full range, and sources, of social disadvantage and share with sign language users the need for translation adjust interventions appropriately to address the range for public communication; and children of marginalized of disadvantage the theory mandates must be reduced minorities, in common with children with cognitive or eliminated. As we have seen in examining the capa- impairments, may require substantial accommoda- bilities approach, a clearer appreciation of the com- tions to benefit from education. Second, accommoda- plexity of disability will also assist in theorizing about tions and environmental modifications must be what is often called the “currency of equality,” individualized to be useful, but changes that accom- namely, what it is that egalitarian theories of justice modate people with one type of impairment may be seek to equalize. useless or worse for those with other impairments or for the unimpaired population. Finally, for these and more general reasons of cost, convenience, and effi- Distributive Justice and the Goals ciency, there will inevitably be trade-offs, between of Accommodation and Accessibility individuals and groups, and between areas of social As noted above, there is no theoretical barrier to a participation—employment versus education, access theory of distributive justice based on an interactive to shopping centers versus access to public buildings model of disability, one that treats the individual’s or houses of worship. These trade-offs need to be social environment as responsible for the disadvan- resolved, but it is unclear how to do so. tages associated with impairments. Such a theory Although there are large issues, it is encouraging would challenge the assumption that impairments that they are paradigmatic problems of distributive invariably, or in isolation, lower well-being, create justice rather than fundamental challenges to the pro- inexhaustible needs, or severely restrict the range of ject itself. And indeed, some headway has been made. available life plans. Yet the question remains whether The theoretical underpinnings of universal design, the current crop of distributive theories can fully for example, directly address all three problems. incorporate the social goals of accommodation and Universal design in architecture and product design environmental modification for accessibility. The insists that buildings, public spaces, and products Justice———1005 should be designed to be usable by people with the radically incomplete. In structure, relational theories widest possible range of functional capacities as pos- of justice adopt the core assumption of the procedural sible. Maximally inclusive design reduces the need approach mentioned above, namely, that as long as the for difficult trade-offs among groups and individuals; laws, social practices, and institutions are fair, what- by eliminating the need for retrofitting and modifying ever distributional outcomes that result, even if pro- a standard building or product, such design both foundly unequal, are just. In the case of disability, this responds to concerns about social cost and avoids the means that if we could imagine a society in which appearance that people with impairments are being all forms of prejudice, stigma, misunderstanding, and given special privileges or unfair priority over other stereotyping of impairment were absent, where disadvantaged groups. Much more work needs to be oppression, domination, and exploitation were no done, but the notion of distributive justice may not be longer in evidence, social arrangements would be com- robust enough to encompass all issues of accommo- pletely just with respect to people with disabilities, dation. Yet it needs to succeed, because an approach to even if the current enormous gaps between able- justice focusing exclusively on disrespect, discrimina- bodied and disabled citizens in educational achievement, tion, and disparities in power will be unavoidably income, and employment remained, or even worsened. incomplete. But, it might be asked, if oppression and domina- tion disappear, how could inequality remain? This could happen because an enforceable injunction Antidiscrimination Protection against discrimination does not tell us what resources Is Enough to Secure Justice are required to meet impairment needs, or how we can A more comprehensive challenge, reinforced by alter the physical and social environment to accom- skepticism about the adequacy of distributive modate the functional limitations of impairments, or approaches, is posed by so-called relational theories what measures are required to make the social world of justice, such as Iris Young’s, which focus not on more accessible. distributional outcomes but on the unjust social rela- To answer those central issues of disability policy, tionships of oppression, domination, and hierarchy. not only do we need to identify and measure the direct The initial appeal of relational theories for disability effects of impairments themselves (which will remain is that they tend to highlight precisely the same kinds even if socially created disadvantage is eliminated), of oppressive attitudes, practices, and social arrange- but, more vitally, since we do not have infinite ments that lie behind what the disability rights move- resources, we need a standard for assessing the prior- ment has identified as the basis for social injustice, ity of the goals of access and accommodation. This discrimination. Thus, the much admired ADA, while implies our ability to decide what kind of equality we applying only to those with actual or perceived are aiming toward, or what kinds of inequality we are physical and mental impairments, clearly locates seeking to reduce. But these are not easy issues. injustice in stigma and the related attitudes of devalu- Should we provide resources and make social changes ation that suffuse social practice. For many disability to the point where everyone has “equal opportunity” advocates, the dynamics of discrimination are all that in one of its myriad senses; or to the point where all one needs to know to understand justice in the context burdens and benefits are equalized; or to the point of disability. Pattern-based distributional theories are, where all citizens are equally satisfied with their therefore, of little interest. lives? These are radically different standards. Having Although the debate is far from over, a growing eliminated oppression and discrimination, we will of consensus suggests that while antidiscrimination course be committed to, for example, redesigning laws and policies, fully and competently enforced, do our educational systems and structuring jobs so as to address the core evil in the treatment of people with dis- accommodate people with limited cognitive function- abilities, as a social policy for disability, these tools— ing. But how do we do that? Unfortunately, the purely and the background relational theory of justice—are antidiscrimination approach gives us no guidance. 1006———Justice

Only a theory of distributive justice can provide a of “comprehensive equality” that ask too much of sense of the practical objectives our commitment to society and seek outcomes that are either impossible or justice demands of us. contrary to other important values. Thus, Richard Norman has rejected comprehensive egalitarian distribution on the commonsense ground Disability Justice, Prioritarism, that people are unequal in countless ways, not all of and Democratic Equality which should, or even could, be remedied. Antiegali- Although the antidiscrimination approach has limi- tarians may have a point when they argue that seeking tations as a theory of justice, it has played an impor- equality in the face of human diversity is at best tant role in refining distributive accounts. Criticism Sisyphean, at worse unimaginably oppressive. Some of those accounts by disability scholars has converged people are incurably shy, others form relationships eas- with, and increasingly reinforced, challenges from ily but destroy them just as fast; others strike a balance mainstream philosophers about two features of egali- between these extremes. Even if we could somehow tarian accounts: (1) their acceptance of equality as the redistribute emotional sensitivity (or compensate the objective, although it is not attainable on almost any shy or emotionally volatile), would that be a proper role metric and its single-minded pursuit may compel per- for a just society? Norman thinks for these inequalities verse results, such as “leveling down” the better-off to we should just say, “That’s life,” although they lead to reduce inequality; and (2) their adoption of compre- inequalities in well-being. Of course, the same may be, hensive notions of well-being, which concern all or and has been, said of impairments. most aspects of a person’s life. But if egalitarianism cannot sensibly require the Rawls’s own theory was neither strictly egalitarian elimination of all inequalities and disparities, what nor concerned with equality in any comprehensive does it require? One proposal is that justice requires sense. While it required equal liberty for citizens, the achievement of “democratic equality,” that is, that it accepted inequalities in “social primary goods” society should eliminate all and only those disparities as long as they benefited the worst-off members of in well-being that threaten to undermine basic social society. And his list of primary goods, ranging from or political roles in status and participation. Amy income and wealth to the social bases of self-respect, Gutmann (1987), for example, has argued in the was intended to include assets valuable on any rea- context of education that principles of democracy sonable conception of the good, not to serve as prox- implicitly create a democratic distribution threshold: ies for a particular comprehensive conception. But “sufficient resources to education to provide all many influential political philosophers following children with an ability adequate to participate in the Rawls, such as G. A. Cohen and Dworkin, have offered democratic process” (p. 136). This threshold is mea- accounts that are both more egalitarian and more com- sured in part by the objective of preventing unjust prehensive than that of Rawls. relationships created when some are excluded from In recent years, other philosophers have voiced dis- political processes that affect all, and in part by an comfort with one or both of these features. Some, such appraisal of what skills and abilities are required for as Derek Parfit, have pointed out that a single-minded political participation. The threshold, significantly, policy of equalizing well-being—which might well does not require equality of skill and ability, only the involve a dramatic leveling-down to an unacceptable, minimum necessary for political participation. The but equal, minimum—ignores the moral concern for goal is not to “level down” to the threshold, but to people’s absolute levels of well-being. Parfit argues for guarantee it for all, including children with impair- giving priority to the worst off in society, rather than ments, while at the same time providing some addi- trying to achieve an across-the-board reduction in tional resources for children with the natural abilities inequality. “Prioritarian” accounts have problems of to exceed the threshold. their own (how to characterize “the worst off’”), but Recently, Elizabeth Anderson has proposed a simi- they represent a more general concern about theories lar but more general threshold of democratic equality. Justice———1007

Drawing from both the “patterned” and procedural utterly unachievable. Ironically, Anderson is equally approaches to distributive justice, Anderson argues open to the objection that “equal citizenship” sets the that the inequality that is truly unjust is that of a hier- threshold too low, since it is compatible with a joyless archy of social rankings purporting to reflect intrinsic and barren life, and too high, because the capability worth (which, in turn, invariably generates inequali- preconditions make a huge demand on social ties in the distribution of freedom, resources, and resources. Nonetheless, as Richard Arneson has welfare). Following Sen, Anderson argues that elimi- argued, democratic equality is useful as a rough proxy nating the social hierarchy requires redistribution of for well-being, which remains a contentious notion. those capabilities that people require to avoid, or As is usual in philosophical theorizing, some compro- escape, entanglement in oppressive social relation- mise has to be found between an account of well- ship. Alternatively, justice requires that everyone pos- being that is complete enough to be intuitively sess the capabilities necessary for functioning as equal plausible and one that is concrete enough to guide the citizens in a democratic society. These are the capa- evaluation, and reform, of actual societies. bilities required to participate in the activities of civil society, and at bare minimum, those needed to func- CONCLUSION tion as a human being: “effective access to the means of sustaining one’s biological existence—food, cloth- There is an intriguing symmetry in the challenges ing, medical care—and access to the basic conditions facing distributive and relational accounts of justice as of human agency—knowledge of one’s circumstances they apply to disability. Distributive accounts must and options, the ability to deliberate about means and recognize the centrality to justice of equal social and ends” (Anderson 1999:317–318). political participation, and develop metrics of individ- With respect to disability, Anderson argues that ual well-being in which the capacity and opportunity democratic equality demands that people with disabil- for such participation figure prominently. Relational ity have “good enough access to public accommoda- accounts, in turn, must make the notions of nondis- tions that they can function as equals in civil society.” crimination and nonoppression sufficiently determi- She makes it clear that “good enough” does not require nate to guide the reconstruction of the physical and strict equality of resources (or equality of satisfaction social environment. Hybrid approaches such as or subjective utility), nor does democratic equality Anderson’s—which require that all citizens be require the elimination of disparities in happiness, brought up to a minimum standard for democratic par- pleasure, or resources that are not explicitly required ticipation, not to any comprehensive equality—raise for equal citizenship. On the other hand, achieving hopes for a convergence between extended concep- (more than perfunctory, but truly) effective access to tions of distributive justice and structural accounts of medical care (one of the preconditions for functioning discrimination and oppression. as a human being) is unachievable in even the most Those hopes, however, may be illusory. Justice, as resource-rich society. And if equal citizenship requires Michael Walzer, David Miller, and others argue, may freedom from pain or debility, then Anderson’s goal is be irreducibly plural. Although both distributive and utterly unreachable. Similar points can be made about relational accounts of justice appear to be guided by a the “basic conditions of human agency”: We could principle of equal concern and respect, the former spend an indefinite amount on education, training, and emphasize concern, the latter, respect. The two kinds support for people with cognitive disabilities without of accounts focus on inequalities that, however achieving deliberative competence. closely correlated, may be morally distinct. The fail- The problem appears to be that, motivated by the ure to take adequate account of atypical functioning in perversity of leveling down to achieve welfare, the design of the physical and social environment may resource, or even capability equality, Anderson sets be a fundamentally different kind of wrong than the the bar at “sufficient for equal citizenship,” which, in treatment of people with atypical functions as inferior practical terms, is either too vague to be useful or beings. These wrongs may require different remedies: 1008———Justice the former, redistribution; the latter, recognition. Miller, David. 1999. Principles of Social Justice. Cambridge, MA: Perhaps, then, a single theory of justice cannot do Harvard University Press. justice to both aspects of impairments, as sources of Norman, Richard. 1999. “Equality, Priority, and Social Justice.” Ratio (new series) 12(2, June). functional limitation and as stigmatized differences. Nozick, Robert. 1974. Anarchy, State, and Utopia. Cambridge, We may require both distributive and relational MA: Harvard University Press. accounts to guide disability policy. But even if the Nussbaum, Martha. 1992. “Human Functioning and Social attempt to integrate the two in a democratic threshold Justice: A Defense of Aristotelian Essentialism.” Political account cannot succeed, it provides valuable insight Theory 20. into the kinds of revisions we need to make in both. ———. 2003. “Capabilities and Disabilities: Justice for Mentally Disabled Citizens.” Lecture I of Beyond the Social Contract: —David Wasserman and Toward Global Justice (The Tanner Lectures on Human Jerome E. Bickenbach Values), pp. 418–457. (http://www.tannerlectures.utah.edu. nopq.thml). See also Citizenship and Civil Rights; Civil Rights Backlash; Parfit, Derek. 1997. “Equality and Priority.” Ratio (new series) Democracy; Ethics. 10(3, December): 202–221. Rawls, John. 1971. A Theory of Justice. Cambridge, MA: Harvard University Press. Further Readings Sen, Amartya. 1980. “Equality of What?” In Tanner Lectures on Anderson, Elizabeth. 1999. “What Is the Point of Equality?” Human Values I, edited by S. McMurrin. Salt Lake City: Ethics 109:287–337. University of Utah Press. Arneson, Richard. 2000. “Luck Egalitarianism and ———. 1993. “Capability and Well-Being.” In The Quality of Life, Prioritarianism.” Ethics 110:339–349. edited by Martha Nussbaum and Amartya Sen. Oxford, UK: Bickenbach, Jerome. 1993. Physical Disability and Social Policy. Clarendon. Toronto and London: University of Toronto Press. Silvers, Anita. 1994. “‘Defective’ Agents: Equality, Difference Cohen, G. A. 1989. “On the Currency of Egalitarian Justice.” and the Tyranny of the Normal.” Journal of Social Ethics 99(July): 906–944. Philosophy, 25th Anniversary Special Issue, pp. 154–175. Daniels, Norman. 1986. “Justice and Health Care.” Pp. 290–325 Silvers, Anita, David Wasserman, and Mary Mahowald. 1998. in Health Care Ethics: An Introduction, edited by Donald Disability, Difference, Discrimination. Lanham, MD: Van DeVeer and Tom Regan. Philadelphia: Temple Rowman & Littlefield. University Press. Stein, Mark S. 2002. “The Distribution of Life-saving Medical Dworkin, Ronald. 1981. “What Is Equality? Part 2: Equality of Resources: Equality, Life Expectancy, and Choice behind the Resources.” Philosophy and Public Affairs 10(4). Veil.” Social Philosophy and Policy, pp. 212–245. Fraser, Nancy. 1995. “From Redistribution to Recognition: Walzer, Michael. 1983. Spheres of Justice. New York: Basic Books. Dilemmas of Justice in a ‘Post-Socialist’ Age.” New Left Wasserman, David. 1996. “Some Moral Issues in the Correction of Review 212:68–93. Impairments.” Journal of Social Philosophy 27(2, Fall): 128–145. Gutmann, Amy. 1987. Democratic Education. Princeton, NJ: Young, Iris Marion. 1990. Justice and the Politics of Difference. Princeton University Press. Princeton. NJ: Princeton University Press. K

ᨘ KALLIKAK, DEBORAH (1889–1978) dangerous “borderline” types he designated as “morons,” American subject of eugenics research highly functioning but “defective” individuals who, if not properly identified and confined, threatened In his widely read eugenic study of 1912, The Kallikak society with the inevitable result of producing more of Family, Henry H. Goddard introduced Deborah Kallikak their kind. Deborah died in 1978; she lived 81 of her as a quintessential example of “defective” heredity. At the 89 years in an institution. age of eight, Deborah entered the Vineland (New Jersey) —Michelle Jarman Training School after troublesome behavior marked her as potentially “feeble-minded.” As Goddard and his field- See also Developmental Disabilities; Eugenics; Henry Herbert workers gathered information on her familial background Goddard; Mental Retardation, History of. to assess the possibility of “hereditary taint,” she became scientifically valuable for her relationship to a large and Further Readings extended family “notorious for the number of defectives Goddard, Henry H. 1912. The Kallikak Family: A Study in the and delinquents it had produced” (Goddard 1912:16). Heredity of Feeble-Mindedness. New York: Macmillan. Goddard invented the surname Kallikak from the Greek Gould, Stephen Jay. 1996. The Mismeasure of Man. New York: words for beauty (kallos) and bad (kakos) to indicate that W. W. Norton. the distant progenitor had produced both a good line and a bad line of descendants. In effect, Goddard’s study sci- ᨘ entifically designated Deborah, her living relatives, and KANNER, LEO (1894–1981) her ancestors on the “bad” line as human evidence of the Austrian-American psychiatrist hereditary nature of feeblemindedness. At the time of Goddard’s writing, Deborah was 22 Leo Kanner was one of the most influential American years old, but Binet tests charted her mental age at 9. clinical psychiatrists of the twentieth century. He has Her accomplishments, however, make this diagnosis been referred to as the “father of child psychiatry” in troubling. Deborah loved music, writing stories, gar- the United States, and his textbook Child Psychiatry, dening, and caring for children, but her inability to first published in 1935, remained a standard reference understand numbers and money, lack of abstract thought, work for 50 years. Kanner is perhaps best known for and stubbornness convinced Goddard she was feeble- his description of “early infantile autism” in 1943 as a minded. The most biased aspect of his diagnosis was distinct clinical syndrome. Based on his observation the presumption she would lead a “vicious, immoral, of 39 children with similar behavior, Kanner described and criminal” life outside an institution (Goddard a common profile whereby the children did not relate 1912:12). Goddard used Deborah to exemplify the “in the ordinary way” to people or situations. Instead,

1009 1010———Katada ibn Di`ama as-Sadusi (ca. 679/680–735/736)

Kanner (1943) described a child whose “behavior is Further Readings governed by an anxiously obsessive desire for the main- Charles Pellat. 1978. “Katada b. Di`ama.” P. 748 in Encyclopaedia tenance of sameness that nobody but the child himself of Islam, new edition, Vol. 1. Leiden, Netherlands: Brill. may disrupt on rare occasions” (p. 243). Although he Ibn Khallikan’s Biographical Dictionary. 1842–1871. Translated was to repudiate the term (and the theory behind it) by by Mac Guckin de Slane, Vol. 2, pp. 513–514. Paris. the 1970s, Kanner also coined the term “refrigerator mother” to describe the supposed emotional frigidity of parents that he thought caused, or at least contributed ᨘ KATAKORI to, their children’s autistic behavior. Kanner was born in Klekotow, Austria, in 1894, Katakori or katakori kô is a condition peculiar to and received his medical degree from the University Japan; the name of this condition is somewhat diffi- of Berlin in 1921. He moved to the United States in cult to translate into English, but it comes closes to 1924, and from 1930 until his retirement in 1959 was “pain in the neck.” It corresponds generally to a on the faculty of the Johns Hopkins Medical School. combination of stiffness, tension, or pain in the neck Even after his retirement, Kanner remained profes- and shoulders. Its etiology is often associated with sionally active as a visiting professor at numerous reduced blood flow to muscle tissue. Some have sug- universities and maintained a clinical practice until gested that it is a physical symptom that allows for shortly before his death in 1981 at the age of 86. medical care in the setting of Japanese stigma against —Philip M. Ferguson psychological pain. Treatment ranges from anti- inflammatory medications to transcutaneous electrical See also Autism; Psychiatry. nerve stimulation (TENS) to acupuncture. While its history is suggestive of many compara- Further Readings tive elements, modern medical researchers have used Eisenberg, Leon. 1981. “In Memoriam: Leo Kanner.” American the status of katakori as a cultural-bounded syn- Journal of Psychiatry 138:1122–1125. drome to identify it and other somatic complaints as Kanner, Leo. 1943. “Autistic Disturbances of Affective Contact.” markers of depression in Japanese in cross-cultural Nervous Child 2:217–250. studies. In popular culture, perhaps not unlike conditions such as anorexia, one can find reflexive ᨘ KATADA IBN DI`AMA affinity for katakori, suggested by T-shirts saying, “I ♥ katakori.” AS-SADUSI (CA. 679/680–735/736) Arab scholar —Walton O. Schalick III

Katada ibn Di`ama as-Sadusi was blind from birth and See also Cultural Context of Disability; Disability Culture. had Bedouin origins. He became a learned man of the Further Readings highest reputation at Basra, Iraq. Katada’s renowned memory and recall led to his being often consulted on Kuriyama, Shigehisa. 1997. “Katakori kô” (“Reflection on matters of history, genealogy, poetry, and Qur'anic Katakori”). Pp. 37–62 in Rekishi no naka no yamai to igaku, edited by Shigehisa Kuriyama and Keiji Yamada. Kyoto: interpretation by both rulers and scholars of his time. Shibunkaku Shuppan. Evidently he prized his independence and developed a Office of Health Statistics, Ministry of Health and Welfare. 1997. strong awareness of space and direction; it was recorded Graphical Review of Japanese Household. Tokyo: Health that he “used to go from one end of Basra to the other and Welfare Statistics Association. without a guide” (Ibn Khallikan’s Biographical Dictio- Waza, Kazuhiro, Antonnette V. Graham, Stephen J. Zyzanski, and nary 1842–1871). Kazuo Inoue. 1999. “Comparison of Symptoms in Japanese and American Depressed Primary Care Patients.” Family —Kumur B. Selim Practice 16:528–533. Kenny, Sister Elizabeth (1880–1952)———1011

ᨘ ᨘ KELLER, HELEN (1880–1968) KENNY, SISTER ELIZABETH American author and lecturer (1880–1952) Australian nurse Helen Keller was born in Tuscumbia, Alabama, on June 27, 1880. At the age of 19 months, she contracted Sister Elizabeth Kenny, a feisty, opinionated, largely an illness, either scarlet fever or meningitis, that left self-educated bush nurse, enraged the Australian her totally deaf and blind. In 1887, Anne Sullivan, a medical establishment with her pioneering treatments recent graduate of the Perkins Institution for the Blind that significantly alleviated the effects of polio. Her in Boston, joined the Keller household as Helen’s methods, which she developed over several years of teacher. Keller learned to communicate using the treating children with polio and cerebral palsy in manual alphabet for the Deaf. She graduated cum Queensland, consisted of hot baths, foments, and mobi- laude from Radcliffe College in 1904. She published lization of paralyzed limbs with passive movements to nearly a dozen books as well as numerous articles, reeducate affected muscles. She passionately asserted essays, tracts, and poems. Her work was primarily that the traditional procedures of splinting and bracing autobiographical, but she also wrote on such subjects immobilized limbs in metal and plaster casts caused as women’s suffrage, women’s health issues, the labor major deformities and were tantamount to torture. movement, and religion. She traveled widely, in the Damned by no less than a royal commission of the United States and throughout the world, as a lecturer Queensland medical fraternity, in 1940 Kenny took and spokesperson for the American Foundation for the her treatments first to the Mayo Clinic in Minnesota Blind, which she helped to found in the 1920s. She and later established the Elizabeth Kenny Training also toured on the vaudeville circuit for two seasons Institute in Minneapolis. Gradually her work gained and appeared in several film documentaries on her acceptance and she gained fame and honor throughout life. She died at her home in Westport, Connecticut, the United States, where she resided for 11 years. on June 1, 1968. Kenny’s legacy to the disability community For many, Helen Keller’s story is the quintessen- extended far beyond her lifetime and is evident in tial overcoming narrative. Through the sheer force of medical rehabilitation therapies practiced today will and the self-sacrifice of her devoted teacher, she throughout the world. People with a range of neuro- overcame her disability and serves as an inspiring logical conditions involving some form of paralysis, symbol of the resilience of the human spirit. For including spinal cord and head injury, multiple sclero- this reason, her image appears on the state quarter of sis, stroke, and cerebral palsy, are indebted to Kenny’s Alabama. By contrast, many in the disabled commu- vision, common sense, and conviction. Sadly, she is a nity, both during Keller’s lifetime and today, have largely forgotten figure in Australia, but she is still criticized her for the way she remained aloof from widely revered in the United States. other disability organizations and causes. She —Joan Hume angered many in the Deaf community by following the lead of her mentor, Alexander Graham Bell, and See also Polio. supporting auralism rather than Sign. More recently, disability studies scholars have begun to reexamine Further Readings her life and work in an attempt to separate the myth Kenny, Sister Elizabeth. 1937. Infantile Paralysis and Cerebral from reality and gain a better understanding of her Diplegia. Sydney: Angus & Robertson. legacy. ———. 1955. My Battle and Victory. London: R. Hale. ——— (with Martha Ostenso). [1943] 1982. And They Shall —Georgina Kleege Walk: The Life Story of Sister Elizabeth Kenny. Stratford, NH: Ayer. Olson, Dan. 2002, August 22. “Gentle Hands: Fear of Polio Grips See also Deafblindedness. the Nation” (transcripts, radio feature on polio epidemics and 1012———Kerlin, Isaac Newton (1834–1893)

Sister Kenny’s work in the United States). Minnesota Public that with skilled treatment most feebleminded Radio. Retrieved April 12, 2005 (http://news.mpr.org/features/ children could be cured or significantly improved. 200208/22_olsond_sisterkenny/part1.shtml). Even his descriptions of “moral idiocy” (or, in later Websites terms, “moral imbecility” or “juvenile insanity”) endorsed the notion of hereditary incurability and the Minnesota Historical Society, inventory of Sister Elizabeth need for custodial institutionalization for those with Kenny’s papers, http://www.mnhs.org/library/findaids/00201 .html normal intelligence but a defective “moral sense.” Minnesota Historical Society, Sister Elizabeth Kenny page, http:// —Philip M. Ferguson www.mnhs.org/library/tips/history_topics/91kenny.html Sister Elizabeth Kenny Memorial Fund, http://www.sisterkenny See also Mental Retardation, History of; Edouard Onesimus .org.au/history.htm Séguin. Sister Kenny Rehabilitation Institute, http://www.allina.com/ahs/ ski.nsf/page/history Further Readings Kerlin, Isaac N. 1890. “The Moral Imbecile.” Pp. 244–250 in ᨘ Proceedings of the National Conference of Charities and KERLIN, ISAAC NEWTON Correction. (1834–1893) Trent, James W., Jr. 1994. Inventing the Feeble Mind: A History American institution administrator of Mental Retardation in the United States. Berkeley: University of California Press. From 1863 until the time of his death in 1893, Isaac Newton Kerlin was the superintendent of the ᨘ Pennsylvania Training School for Feebleminded KESSLER, HENRY HOWARD Children (better known as the Elwyn Institute), (1896–1978) located outside of Philadelphia. Kerlin himself American physician became one of the leaders of the first generation of superintendents for the so-called idiot asylums that Henry Howard Kessler, a pioneer in the development were emerging in post–Civil War America. In 1876, in of comprehensive rehabilitative services for people an effort to gain professional status equal to that of the with physical disabilities, was born in Newark, New more established leaders of the older insane asylums, Jersey, on April 10, 1896. A 1919 graduate of Cornell Kerlin invited five other fellow superintendents and University Medical School, Kessler earned a doctorate the prominent educator Edouard Séguin to join him in social legislation from Columbia University in 1934. in Philadelphia to found the Association of Medical Inspired by Dr. Fred H. Albee, an orthopedic surgeon Officers of American Institutions for Idiotic and who practiced during World War I, Kessler became a Feeble-Minded Persons (now known as the American well-recognized orthopedic surgeon, medical adminis- Association on Mental Retardation). Kerlin would trator, and international advocate for people with serve as the secretary-treasurer of this organization for disabilities. He is recognized as the developer of the the next 16 years, actively publishing and disseminat- surgical technique of cineplasty for control of artificial ing the proceedings of the group’s annual meetings. arms, as for the pneumatic-operated prosthetic arm. With the deaths of Samuel Howe in 1876 and Edouard During his 12-year career in the U.S. Navy, Kessler Séguin in 1880, Kerlin arguably became the most served as a captain from 1941 to 1945. He was director prominent national expert in the treatment and institu- of the New Jersey Rehabilitation Commission from tionalization of the feebleminded population and 1921 to 1941. He founded the nonprofit, nonsectarian remained so until his death in 1893. Kessler Institute for Rehabilitation in West Orange, Throughout his career, Kerlin was an aggressive New Jersey, in 1949 and served as its director until his proponent of institutionalization of individuals with death on January 18, 1978, at age 81. He considered the intellectual disabilities. He was earlier than many of institute, which has long served as a model for centers his colleagues in abandoning the educational optimism for physical rehabilitation, his greatest achievement. Khujjuttara———1013

Kessler provided consultative services to Newark into a pillar at the mosque, which he had not noticed Beth Israel and Newark City Hospitals and the Federal as he was thinking about a problem. Office of Vocational Rehabilitation of the Veterans —Kumur B. Selim Administration. He also directed the Rehabilitation Unit at Christ Hospital in Jersey City, New Jersey, See also Abu 'l-`Ala al-Ma`arri; Abu 'l Aswad ad-Duwali; `Ata ibn and was clinical professor at New York Medical Abi Rabah; Jahiz, Al- (Abu Othman Amr bin Bahr); Middle College. East and the Rise of Islam. He became internationally known for his work as a Further Readings delegate to the International Congresses of Industrial Accidents and Diseases and as a consultant to the Ibn Khallikan’s Biographical Dictionary. 1842–1871. Translated United Nations. Among his many citations and hon- by Mac Guckin de Slane, Vol. 1, pp. 493–498. Paris. orary degrees, most noteworthy are the Albert Lasker Sellheim, R. 1978. “Al-Khalil b. Ahmad.” Pp. 962–964 in Encyclopaedia of Islam, new edition, Vol. 4. Leiden, Award (1954) and the first President’s (Truman) Netherlands: Brill. Award of the Committee on Employment of the Physically Handicapped (1952). His many publica- tions include Accidental Injuries (1931), Cineplasty ᨘ (1947), Rehabilitation of the Physically Handicapped KHUJJUTTARA (1947), The Principles and Practices of Physical Khujjuttara was the hunchbacked maid of Queen Rehabilitation (1950), Low Back Pain in Industry Samavati in ancient India. Converted under the (1955), Peter Stuyvesant and His New York (1959), Buddha’s teaching, she immediately gave up her prac- and The Knife Is Not Enough (1968). tice of stealing the queen’s money. As Khujjuttara —Joel A. DeLisa admitted her earlier thefts to the queen and explained why she had changed her behavior, she was asked to Websites preach to 500 lady courtiers and soon attained a pre- Henry H. Kessler Foundation, http://www.hhkfdn.org eminent position as a religious teacher. This unprece- dented rise from deformed female servant to teacher of the Law was endorsed by the Buddha. Khujjuttara’s ᨘ KHALIL, AL- (CA. 710–787) life is recorded to illustrate karmic retribution in Arab scholar and teacher the morally educational sense. In an earlier birth she had mocked a deformed holy man at Benares, and so Al-Khalil ibn Ahmad was a famous grammarian, earned a “corrective” rebirth as a hunchback herself, prosodist, and teacher at Basra, Iraq. His son was so that the progress of her soul should not be impeded impaired in intellect, and Al-Khalil was one of the ear- by wrong thinking and behavior. Elsewhere, liest parents to record some thoughts about this issue. Khujjuttara played a substantial comedy role in one of Once, hearing his father scanning a verse by the rules the Buddha’s lives, Kusa Jataka. There she took of prosody that he had invented, this lad ran out and advantage of her position as royal nanny, locking up told people his father had gone mad. Al-Khalil treated her mistress, Pabhavati, and generally throwing her him in a kindly way and exercised patience toward weight around. She was named as Khujjuttara at the other students who learned slowly or not at all. The close of that story, where the Buddha identified vari- learned scholar asked one such student to scan the ous well-known characters. verse, “If you cannot accomplish a thing, leave it and —Kumur B. Selim pass to another which you can accomplish.” To his surprise, the student understood the politely coded message and gave up his fruitless studies. Al-Khalil Further Readings reportedly lived as an impoverished scholar, with Burlingame, E. W., trans. [1921] 1969. Pp. 281–282, 292 in mind focused on higher things. He died after crashing Buddhist Legends, Vol. 1. London: Luzac. 1014———Kirkbride, Thomas S. (1809–1883)

Dutt, N. 1993. “Great Women in Buddhism.” Pp. 253–274 in ᨘ KNOTT, MARGARET (1918–1978) Great Women of India, edited by S. Madhavananda and R. C. Majumdar. Calcutta: Advaita Ashrama. American physical therapist “Kusa-Jataka, No. 531.” 1895–1907. Pp. 141–164 in The Jataka, Vol. 5, edited by E. B. Cowell. Cambridge, UK: Cambridge Margaret Knott was born in Oxford, North Carolina, University Press. in 1918 and graduated from what is now Appalachian State University in Boone, North Carolina, with a major in physical education. In 1942, she entered Walter Reed ᨘ KIRKBRIDE, THOMAS S. Army Hospital to study physical therapy and, on com- (1809–1883) pletion of her studies in 1943, was commissioned a American psychiatrist second lieutenant in the U.S. Army Medical Corps. After leaving the army, she became affiliated with the Thomas Story Kirkbride was perhaps the most promi- Kabat Kaiser Institutes (later the Kaiser Foundation nent American psychiatrist (or “alienist,” as psychia- Rehabilitation Center), where she gained her reputation trists were also called) of the mid-nineteenth century. as a physical therapist treating injured mine workers. He is best known as the creator of the “Kirkbride Knott had a long collaboration with Dr. Herman Kabat Plan” elaborated in his influential work on asylum as they developed the concepts and approach to patient design and construction, On the Construction and care called proprioceptive neuromuscular facilitation Organization of Hospitals for the Insane, published in (PNF), which emphasizes the exercise of muscles 1854. Kirkbride was the first superintendent of the in specific movement patterns. The first edition of her Pennsylvania Hospital for the Insane in Philadelphia, book Proprioceptive Neuromuscular Facilitation: a position he held from its opening in 1841 until Patterns and Techniques, was published in 1956. his death more than 40 years later in 1883. It was “Maggie” spent most of her professional life in Vallejo, at Kirkbride’s invitation that he and 12 of his California, where she was a magnet for physical thera- fellow insane asylum superintendents gathered in pists from many nations who came to study with her. Philadelphia in 1844 to found the organization that is She also traveled and lectured the world over. now known as the American Psychiatric Association. —Helen J. Hislop and Kirkbride’s famous plan for asylum design and Suzann K. Campbell operation called for a linear blueprint with wings added on to a main central building. The plan also See also Physical Therapy. called for strict size limitations of no more than 250 residents (a principle honored mainly in the breach), Further Readings with an ample, open campus surrounded by a large Archive, American Physical Therapy Association, Alexandria, VA. wall. As was the case among his early colleagues (e.g., Knott, Margaret. 1973. “In the Groove.” Physical Therapy Isaac Ray, Pliny Earle, Amariah Brigham), Kirkbride’s 53:365–372. Knott, Margaret and Dorothy E. Voss. 1956. Proprioceptive encouragement of congregate care for the insane grew Neuromuscular Facilitation: Patterns and Techniques. from a strong belief in the curability of the insane if New York: Hoeber. they were given timely, appropriate, and therapeutic Murphy, Wendy. 1995. Healing the Generations: A History of treatment. Physical Therapy and the American Physical Therapy Association. Alexandria, VA: American Physical Therapy —Philip M. Ferguson Association. Voss, Dorothy E., Marjorie K. Ionta, Beverly J. Myers, and See also Amariah Brigham; Isaac Ray. Margaret Knott. 1985. Proprioceptive Neuromuscular Facilitation: Patterns and Techniques, 3d ed. Philadelphia: Further Readings Harper & Row. Tomes, N. 1984. “A Generous Confidence”: Thomas Story Websites Kirkbride and the Art of Asylum-Keeping, 1840–1883. New York: Cambridge University Press. American Physical Therapy Association, http://www.apta.org Kyo– gen Comedy———1015

ᨘ KOREA Diseases, emerged out of the Kraepelin system. Psychiatric illness has, according to Kraepelin, a clear See History of Disability: Korea somatic cause; with this thesis, he relied on a psycho- physiological parallelism. He did not consider psy- chosocial reasons, and this made him a proponent of ᨘ — — natural scientifically oriented psychiatric doctrine. KOTO, KUZUHARA (1813–1882) Consequently, he also subscribed to the popular Japanese musician and designer theory of “degeneration.” This was evident in his foren- sic publications. - - Kuzuhara Koto lost his sight in early childhood. He Throughout his life, Kraepelin had a pronounced - studied under Kengyo Matsuno at Kyoto and became interest in clinical research. As a disciple of Wilhelm a renowned regional performer on the koto (Japanese Wundt (1832–1920) in Leipzig, and with a focus on zither). He had unusual spatial sense and dexterity, experimental psychology, he founded in 1917 the being credited with original designs in origami (the art German Research Institute for Psychiatry in Munich. of folding paper to produce decorative shapes) and As a cofounder of psychopharmacology, he was influ- living in a house that he himself designed in the city of ential through the end of the twentieth century. Kannabe. In later life he made wooden printing blocks of a tactile nature for his own use, and with them he —Vera Moser kept a personal diary for more than 30 years. The print- See also Psychiatry. ing tools and diary are noted in Kannabe as important cultural property that is preserved for posterity. Further Readings —Kumur B. Selim Hoff, Paul. 1994. Emil Kraepelin und die Psychiatrie als klinische Wissenschaft (Emil Kraepelin and Psychiatry as Clinical Further Readings Science). Berlin: Springer. Kraepelin, Emil. 1903. Psychiatrie. Ein Lehrbuch für Studierende The Japan Biographical Encyclopedia and Who’s Who, 2d ed. und Ärzte (Psychiatry: A Handbook for Students and 1960. P. 763. Tokyo: Rengo. Doctors), 7th ed., 2 vols. Leipzig: J. A. Barth. Ludwig, Barbara and Jutta Inglik. 1984. “Emil Kraepelins Beitrag Websites zur Entwicklung einer wissenschaftlich begründeten psychi- atrischen Krankheitslehre und Versorgungspraxis” (“Emil Kannabe site, http://www.asahi.net.or.jp/~ui9y-mtng/kannabe0html Kraepelin’s Contribution to the Development of Scienti- fically Grounded Psychiatric Pathology”). Ph.D. dissertation, Leipzig. ᨘ KRAEPELIN, EMIL (1856–1926) Steinberg, Holger. 2001. “Emil Kraepelin (1856–1926) in Leipzig German professor of psychiatry und die Grundlegung seines wissenschaftlichen Werkes” [“Emil Kraepelin (1856–1926) in Leipzig and the Basis of His Scientific Work”]. Ph.D. dissertation, Berlin. Emil Kraepelin, considered to be the founder of modern clinical psychiatry, was born in Neustrelitz, Germany, in 1856 and died in Munich in 1926. He — taught in Dorpat from 1886 to 1891, in Heidelberg ᨘ KYOGEN COMEDY from 1891 to 1903, and in Munich from 1903 to 1922. His widely distributed textbook on nosology, Com- Kyo-gen plays emerged in fourteenth-century Japan as pendium of Psychiatry, published between 1883 and brief comedies played between performances of the 1927 in a total of nine revised editions, made the more serious Noh drama. The repertoire of Kyo-gen symptomatic diagnosis of clearly delineated illnesses (literal meaning, “crazy words”) grew to about 250 possible. plays recognized in later compilations. They were not Even today’s classification system, the World standardized texts in the earlier ages. Players worked Health Organization’s International Classification of up outlines in different ways, then continued refining 1016———Kyo– gen Comedy their acts. Disabled characters appeared in some Kyo-gen between the nice man he met first and the hooligan plots, the audience being crudely entertained by their who knocked him down. defects, stupidities, and abuse by the world. In This is the essential Kyo-gen as now understood, Akutagawa, two travelers, each trying to hide his own crazy stuff carrying a sharp message within the slap- impairment, gleefully expose each other’s defects to stick, pinpointing the ambivalence of attitudes, con- mockery. In Kagami Otoko, the bumpkin’s naïveté is trasting polite hypocrisy with underlying cruelty. Yet it comically revealed when a peddler sells him a mirror seems that the early Japanese Zato- Kyo-gen portrayed but is exceeded by his wife’s imbecility when he pre- frank ridicule of blind men who suffered farcical tricks sents the mirror to her. She fails to recognize the to amuse the watchers without any irony. The plays woman she sees in it, but realizes that her husband have become more politically correct in recent must have been dallying with this hussy. He flees centuries, with interpreters introducing moralizing before her wrath. elements. Parallels have been drawn with medieval Better known are the Zato- Kyo-gen, which are based European drama in which serious reenactments of reli- on blind characters. More than a dozen plays fall into gious and moral themes were relieved by comedy with this group—Dachin, Dobu-katchiri, Hakuyo-, Inu-hiki, satire and slapstick. A crude French farce such as the Kawakami, Kikazu zato-, Kiyomizu zato-, Mari-ke thirteenth-century Le Garçon et l’aveugle, about a zato-, Muma-kari, Nuno-kai, Saru zato-, Tarashi, Tsuki-mi blind man whose servant plays tricks on him, could zato-—but some are now obsolete. Among the best readily be adapted to the original Zato- Kyo-gen style. known is Tsuki-mi zato-, in which a blind man engages —Kumur B. Selim in the refined Japanese custom of viewing the full moon in a field. He is most appreciative of the delight- ful choir of insects, which he describes aloud. He is Further Readings joined by a sighted moon viewer from an upper-class Golay, J. 1973. “Pathos and Farce: Zato- Plays of the Kyo-gen area. They engage in polite conversation and share Repertoire.” Monumenta Nipponica 28:139–149. - some wine. Then they take their leave, thanking each Kenny, D. 1989a. “Akutagawa.” Pp. 138–143 in The Kyogen Book. other for the company. Each feels content, the blind Tokyo: Japan Times. ———. 1989b. “Kagami Otoko.” Pp. 64–69 in The Kyo-gen Book. man because he had a pleasant encounter, the sighted Tokyo: Japan Times. man because of his exercise in polite condescension. ———. 1989c. “Tsuki-mi zato-.” Pp. 204–211 in The Kyo-gen The audience then hears another thought striking the Book. Tokyo: Japan Times. sighted man: He could exercise his talents further by Muraille, G., ed. 1964. Anthologie de la Littérature française du sneaking back and picking a fight with the blind man, moyen âge, Vol. 1, 3d ed., pp. 243–246. Gembloux, Belgium: using a disguised voice. He promptly does so, bump- J. Duculot. Scholz-Cionca, S. 1992. “What Happened to the Zato- Kyo-gen? ing into the blind man, cursing the man’s clumsiness, Paradigm Shifts in the Evolution of the Blind Man Plays.” knocking him down, then running away. The irony is Nachrichten der Gesellschaft für Natur- und Völkerkunde heightened as the blind man wails about the contrast Ostasiens (Hamburg) 152:39–58. L

ᨘ LABELING and aesthetic norm. In contrast, “the lame” were an ordinary part of the ancient human landscape. See Stigma The image in the mind’s eye of the ancient world is influenced by the legacy of the Renaissance and onward, when scholars and artists depicted perfect ᨘ Graeco-Roman buildings draped with perfect Graeco- LAGOVSKY, NIKOLAY Roman bodies. In fact, any given public gathering MIKHAILOVICH (1862–1933) place in the ancient world would have included people Russian educator with a much greater variety of physical conditions than we see in the developed world today. Permanent Nikolay Mikhailovich Lagovsky was a deaf educator “lameness” could be acquired at many different stages and director of the Mariinskoe school for the deaf in one’s life. Inadequate nutrition during pregnancy in Murzinka village near St. Petersburg, Russia. He was a significant factor in the ancient world in terms of organized two boarding schools for the Deaf near producing offspring with physical anomalies. Clubfoot Moscow (Aleksandrov, Pererva) and held a position is just one example of “lameness” that can be acquired as professor in deaf education of the Moscow State in the womb. Because of the easy corrective procedure Pedagogical University. He wrote a number of books available today for this condition, we do not see many on deaf education and the history of deaf education, people with clubfoot in developed countries, but it was including Methods of Instruction of the Deaf-Mute quite common in the ancient world; the Greek god and St. Petersburg School for the Deaf-Mute. Hephaestus (the Roman Vulcan) himself was por- —Anna Komarova and trayed with a condition that matches the description of Victor Palenny clubfoot. Children born without irregular gait could acquire it from a variety of circumstances later in life. The bones ᨘ LAME, THE of children who are underfed do not have a chance to develop properly. Vitamin deficiencies, especially in In the twenty-first century, the word lame is used combination with swaddling, likely led to such mal- primarily as slang for a poor attempt. It is rarely used formations as rickets. A simple accident, such as a fall, anymore to refer to human gait. Perhaps this shift could have irreversible consequences for both children in vocabulary reflects the physical landscape of the and adults in the ancient world. In the developed twenty-first century, in which people with variant gait world, we take for granted that, with medical attention, are increasingly rare as a result of medical technology even the most severe fracture will be undetectably

1017 1018———Lange, Dorothea (1895–1965) repaired, and we assume that medical attention to a in the United States. She claimed that her noticeable broken bone will result in perfect healing. In the limp allowed her access to her subjects because it ancient world, a visit from a doctor could have a range made her less threatening as a documenter of exploita- of possible results, as doctors’ training was not stan- tion, poverty, and suffering. According to Lange: “I dardized, licensed, or necessarily respected. was physically disabled, and no one who hasn’t lived However an ancient doctor treated a bone injury, it the life of a semi-cripple knows how much that means. was not the injured bone but rather the infection that I think it perhaps was the most important thing that might ensue that was responsible for extreme damage. happened to me, and formed me, guided me, instructed The bone-injured person would be lucky if the bone me, helped me, and humiliated me” (quoted in Holland simply healed crookedly, because every bone injury 1999). Lange paid a great deal of attention to feet in was also susceptible to infection. Untreated by antibi- her work. During 1957, she produced more than a otics, an infection can spread throughout surrounding dozen photographs of her own disabled foot and leg. tissues and then the bone itself, attacking even the —David T. Mitchell bone marrow. In addition to injury and infection, disease was responsible for permanent physical See also Polio. impairment, and epidemic diseases could leave whole Further Readings groups of people with permanent physical handicaps. Far from the embodiment of the golden mean, the Holland, Henry. 1999, July. “Dr. Henry Writes about Dorothea ancient population included a wide variety of somatic Lange.” Deja View (newsletter of the Central Virginia Post- Polio Support Group). Retrieved May 7, 2005 (http://www configurations. There is no evidence that wheelchairs .ott.zynet.co.uk/polio/lincolnshire/library/drhenry/dorotheala existed in any form, nor is there evidence that people nge.html). may have propelled themselves in small carts. People with missing limbs or with other significant mobility impairments probably got around however they could, ᨘ LANGUAGE OF DISABILITY using crutches as necessary. In the new global disability universe, perhaps no —M. Lynn Rose more contentious debate exists than that surrounding See also History of Disability: Ancient West. language. Much abuse and harassment of disabled persons occurs as a matter of hate speech even as Further Readings abusive acts can be covered over with euphemistic Rose, Martha L. 2003. The Staff of Oedipus: Transforming Disability expressions and the benevolent rationalizations of in Ancient Greece. Ann Arbor: University of Michigan Press. professional discourse. Language study thus bears the onus of making visible the contours of disability expe- riences without erasing the realities behind rhetoric. ᨘ LANGE, DOROTHEA Particularly since the Enlightenment (1700–1900), (1895–1965) many philosophical efforts to explain “reason” as American photographer exemplary of what separates humans from animals derive from individuals’ assessed competence with Dorothea Lange was born in Hoboken, New Jersey, in linguistic expression. In some frameworks, then, non- 1895. She contracted polio at age seven, which speaking persons or those with communication-based resulted in a weakened right lower leg and a visible disabilities may be negated as rational human beings limp. The changes in her body as a result of polio out of an apparent lack of verbal fluency that is proved profound and shaped her personality and her presumed to equate with an absence of value. later practice as a journalistic photographer. Her most Disability historians sometimes remark that dis- recognized works involve pictures she took of impov- ability today constitutes a densely ramifying totality erished migrant farmers during the Great Depression era (see, e.g., Gerber 2000)—the phrase attempts to Language of Disability———1019 reckon with the fact that the term disability literally Because of this added punch supplied by the use of consists of conflicting investments among disciplines, disability terminology, one crosscurrent in the field of sciences, and public cultures. In referencing disability disability poetics has been a determination to embrace in this manner, we can better understand the varied the rhetorically charged references to crippled lives, vocabulary and beliefs that inform our contemporary akimbo limbs, lame figures of speech, cross-eyed understanding of disability. This insight is worth picking stratagems, and limping gaits in poetic traditions. A up, given that so many professional and community privilege of being a practitioner of poetics, after all, is interests intersect across the single figure of a disabled that one has permission to investigate language in all individual. Charity interests interpret pathos, plucki- its permutations. ness, tragedy, and deserving vulnerability in disabled Disability poetics, then, assists in demonstrating persons. Educational interests see the difficult, special, that the historical language used to define, segre- unreachable, or uncontrollable “learner.” Medicine gate, and confine people with disabilities is a rich but approaches disability as a flaw to be conquered and as fraught area for research and interpretation. An deviance to be overcome. Rehabilitation recognizes encounter with this vast array of historical synonyms disability as a deficit in need of supplementation and for physical, sensory, and cognitive “deviance” concealment. Everywhere one finds terminology that demonstrates that while we often seek a less dehu- selects the “cute ones” and conceals or gasps at the manizing vocabulary to reference disability, such a “gross ones.” Thus, language becomes a barometer of project proves difficult to achieve. In fact, the multi- the degree to which a culture openly grapples with the plicity of ways for referencing disabled lives suggests effort to accommodate all capacities or cater to a narrow the degree to which comprehending disability consti- range of abilities. tutes a central social task in our own historical period. Insights from disability studies enter into this Even the widely accepted term disability denotes a discussion in a reflexive manner, prompting us to pay form of euphemistic window dressing that cannot closer attention to the language that filters our per- successfully exorcise the “barbarism” of previous ter- spectives about human differences, particularly as a minology from which disabled people seek social matter of grappling with the slippery metaphors and redress. allegories that make body predicaments into emblems Consequently, the battle over self-naming hits at for cosmic, or simply social, dilemmas. Disability is the heart of language struggles themselves. Yet as rarely used to identify the realities of a life of differ- one disability scholar argues in a discussion of the ence—physical, cognitive, or cultural. A common, relationship of linguistic signs to the goals of political quite justifiable observation among disability scholars reform: “Rather than claiming or disclaiming any set concerns well-placed discontent at having one’s body of stigmata (or stigmatizing terminology), a success- image continually usurped into the expression of a ful poetics of disability would operate from a relent- universal motif. Economies are crippled, excuses are less skepticism of the motives and the truth-value lame, a city council is blind to the consequences of of any sign (marks, names, labels, jargon)....Signs some decision. Disability metaphors add combustion have no more an essential, autonomous existence than and intensity to commentary in any context; they take the categories they represent, and no sign can indeli- an expression of concern up a notch in the registers of bly mark or irretrievably erase a meaning” (Jeffreys rhetorical hyperbole. They up the ante on an atmos- 1997:244). This “relentless skepticism” toward lan- pheric threat so that the strategic placement of a guage fixes provides disability poetics with a more disability-based referent like crippled can lend a sen- dynamic understanding of the politicized notion of tence the quality of an ominous threat. Horror, extrem- language and helps to develop a less naive historical ity, and tragedy are the emotions that these metaphoric recognition that all terms become contaminated with equations seek—relying for their power on the the very ideas they seek to obliterate or refuse. premise that disability can parlay body differences The need to develop a more protean sense of lan- into an equation with impending doom. guage surfaces as disability studies methodologies 1020———Language of Disability become increasingly prominent in academic circles. always choose to extricate oneself from a medicalized One witnesses numerous examples of critics and edu- notion of abnormalcy projected from the outside, the cators who refuse to include disability under current “disability” rubric provides an opportunity to upend work on identity and minority experience. These argu- social expectations. The choice provided by self- ments for exclusion seize on the “biological evidence” designation flirts with the scandalous political poten- of disability as pathology in order to shore up disabled tial of embracing the very identity that others believe people’s “real” difference from other socially disen- to be inherently undesirable. franchised groups. Within these arguments disabled Counterdiscourse in disability studies sweeps up people are refused a place at the table of social con- crip, for instance, into an embrace, just as gay, les- structionism—they are deviant bodies, whereas other bian, and transgender studies came to flaunt queer. If minorities have been unfairly cast as inferior. In such one cannot drive away the insults of the playground, discussions disability poses as less of a linguistic then one can take them up and repeat them as a mat- product and more of a literal “flaw” in the mecha- ter of demonstrable fortitude. Such subcultural recla- nisms of living. In the midst of this refusal, medical mations emphasize belongingness and chummy labels are still assumed to offer up pure diagnostic verbal communities. The counterdiscursive strategy definitions as opposed to social meanings. Within this performs one’s place in language and thus exerts a rationale other marginal identities—such as gender, modicum of control over the placement. race, and sexuality—can be resignified as linguisti- Depending on one’s cultural location, the usage of cally defined differences, but no amount of linguistic gimp now results in poetic profit. For instance, the triage can put the disabled body back together again. disability comedian Robert deFelice takes up the Disability becomes a rent in the fabric of being itself debasing terminology and turns it into a knowing rather than an adjudicator of social beliefs about affectation: “Gimp girls you have consulted with that biological differences. man [the doctor] many times and look at you!” (in There is a good deal of historical contingency to Snyder 1995). Such commentary suggests that strict arguments about the celebratory nature of chosen iden- obeisance to medical regimens of care may not prove tities such as blackness, femininity, and other cultur- helpful to those playfully identified as “gimpy.” ally marginalized groupings. The capacity to embrace Likewise, the disabled performance artist Cheryl a historically devalued position takes generations Marie Wade deploys gnarly and crip as terms of of effort to effect, and one never absolutely arrives at endearment for her various arts endeavors in Berkeley, the desired objective: a language free from stigma. California: Gnarly Bones and Wry Crip Productions. Derogatory epithets such as nigger, hysteric, and queer These efforts of ironic turnabout by disability per- still surface and, because of language’s slippery prop- formers set audiences into titillating hysteria as they erties, metamorphose into differently dehumanizing adeptly expose the limits of professional definitions reference systems. They are the residue from historical and linguistic assignments. Terms that seem to arrive associations of particular biologies with welfare, crim- as unalterably undesirable suddenly become points inality, unproductivity, and inferior intelligence. While of community, camaraderie, and knowing mystery it proves difficult at some points in history to imagine exchanged among the like-minded and like-embodied. that a group can effectively take up a despised identity These ruses of language reveal that labels function as positive, such efforts are only mitigated by a repeti- not as empirical descriptions of undesirable body tious history of linguistic dehumanization. types but rather as parameters that restrict meaning The embrace of formally derogatory language where it should be mobile. In the tongues of savvy among disability groups is no different—efforts disability commentators insulting terminology is speed- to make disability a matter of social identification ily refashioned for impromptu moments of satirical rather than “flawed biology” afford an opportunity of reclaiming. semantic choice where received definition does not In the process of standing language on its head, necessarily mean inevitability. While one cannot these efforts not only set language on the run but, Language of Disability———1021 perhaps more important, begin to efface a lifetime of a movement of disability activists forged a social hurt for those who have borne the brunt of such abuse agenda in part around insistence on the phrase persons in school, in the doctor’s office, and in the workplace. with disability rather than the handicapped, cripples, Recently a man successfully sued his employer on the or disabled person—labels that were all treated as if basis of the fact that the metal plate in the man’s head they further consigned someone to a nonstandard, served as the opportunity for his fellow employees to unjust future. Within such a linguistic formulation, dis- call him “plate-head.” The act of disarming harmful ability would be backloaded as a mere adjective to the language in this manner ensures the retrieval of the personhood of the individual described. In doing so, individual’s humanity in the face of daily language those who participated in such linguistic adjudications wars that would argue otherwise. It assists in exposing argued that disability would be an aspect of our lives the violence that so often passes for “good fun” but not an all-encompassing defining feature. In among those who take disability as a “self-evident” response, others in the same movement argued that sign of an individual’s dehumanization. Political cor- placing disability last in the chain would amount to a rectness wars thus often reference disability in discus- form of denial tantamount to other euphemistic usages sion of the ludicrous extremes to which our society such as physically challenged, special, and handicap- will go to deny the obvious; yet, in doing so, these per. According to this perspective, disabled person is at arguments seek to deny the degree to which the least as acceptable as person with disability in that it language we use shapes perceptions of those who are overtly claims disability as a point of meaningful dif- referenced by such terminology. ference. Stigma is best combated, argued this language Many of today’s language pundits spend time ruing contingent, through an overt embrace of the character- the arrival of the “gerrymandering tendencies of istics directly affecting our lives. In formulating such linguistic reform movements” by using disability as discussions over appropriate terminology, disabled the absurd example par excellence (Dutton 1996:551). persons recognized language as one front in the battle As one prominent commentator argues: “Sooner or for civil rights—it is not merely an adjunct or tangen- later the schoolyard finds out, and retard becomes the tial issue of politically correct language policing. coinage of value. Everyone ought to deplore the In this debate, expertise once established by jargon- abuse, but it is a delusion to suppose that we alter ridden labels developed by medical, social work, medical facts by dispensing new names, for it is the and rehabilitation professionals was challenged and, medical condition that is the problem, not the words in some cases, completely overturned. Disability groups that describe it” (Dutton 1996:559). Rather than made direct claims for the necessity of developing deny that some persons embody a socially despised vocabularies that meaningfully grapple with the eti- biology, the objective of disability studies, disability ologies and implications of bodily and emotional poetics, and the disability rights movements is to experiences that differ (or are perceived to differ) demonstrate that language debases some biologies in from the majority. Whereas “severe” medical vocabu- order to produce an environment of privilege in the laries aspire to neutral description that drives out the cases of gender, race, sexuality, and ability. Analyses last vestiges of freak-show provocations, disabled of language usage, consequently, set our sights on the people deplored the objectification of their bodies contexts within which some biologies benefit at the that whittled them down to “conditions.” Just as late- expense of others. The object of such efforts is not to nineteenth- and early-twentieth-century freak-show deny human difficulties, but rather to critique the idea performers became exotic spectacles—a man with that the complexity of any lived experience can some- atrophied legs metamorphosed into “the thinnest man how be confined to the determinism of a pathologiz- in the world” or “the human skeleton,” a woman of ing medical label. Mexican descent with facial hair became “the bearded Hence the arrival of one of the more controversial lady,” an African American man with scoliosis trans- issues in the history of disability language formation: formed into “the missing link”—the complex human- person-first vocabulary. During the 1970s and 1980s, ity of persons with disabilities would be usurped by a 1022———Language of Disability deterministic feature such as “mental retardation,” a parallel example, educators might discuss research “muscular dystrophy,” or “deafness.” The goal here plans for studies into the future on whether or not was expediency as opposed to clarity, and the politi- sign language should be considered a natural lan- cized parsing of language was one vehicle of choice. guage. For instance, deaf studies scholars have found Yet in many ways some of those attentive to dis- themselves consternated over the discovery that ability language charge that we have not sufficiently American Sign Language has been classified under attended to the wild card of biology that operates as the rubric of “invented languages” alongside the the point of most disabled people’s ostracization in the Klingon language created by writers for the televi- current political debates. According to this argument, sion series Star Trek. one of the weaknesses of our current language politics Like many areas of disability, ideas about lan- is that people with disabilities cannot afford to over- guage reveal a geography of uneven development. For look the vulnerability and “real” limitations of bodies. example, sign language poetry is currently enjoying a Often the problem with medical definitions is not that creative surge of interest, with international perfor- they pay too much attention to disability, but rather mances, an online journal, and literary prizes. that they prove inaccurate as to the experience of the Whereas a history of education for deaf individuals condition itself. Those with multiple sclerosis, for has made sign language usage off limits for deaf instance, would argue that a book by Nancy Mairs students, the effort repressed the idea that signed lan- comes much closer to the nuances of the disorder than guages were the first communicative mode of interac- any deterministic medical textbook entry. In addition, tion among human communities. In banning signing, others have argued that a discussion of disability that then, such educational efforts privileged “voicing” as fails to take into account the social context of experi- a preferred communication method in a hearing ence references little more than a body shorn of its world. Work to explicitly forbid sign language forced environment—a corpse posing as a living condition. alternative communication modes underground, so to Is it necessary to refuse a recognition of biological speak, and the revival of sign language poetry attempts incapacity in order to establish an effective political to reclaim the power of sign language as a rejection of movement? Can one not recognize the often very real such prejudicial premises. New ways of integrating limitations of the bodies that we inherit or acquire the body into linguistic analyses have emerged based without having to give up on revising the language largely on the degree to which sign language poetry used to diminish the lives of persons with disabilities? depends on the body itself as a vehicle of meaning In part, there exists a pressing practicality in this making. The Flying Words Project performer Peter matter; for instance, in research one cannot locate Cook and others have turned their bodies into instru- disabled persons in history without searching the ments of communication that outdistance even the keywords by which they would appear in the dehuman- most articulate oral talker or writer. izing, medicalizing, segregating, or infantilizing lan- Sign language analysis has also helped to unseat guages of their day. Thus, disability scholars ironically common beliefs that associate articulation with found themselves in a conundrum during the 1990s intelligence. Not only deaf people but many with when the Modern Language Association (the largest communication-based disabilities have found them- humanities-based organization in the world) took it selves identified as idiotic, feebleminded, retarded, or upon itself to excise all instances of debasing disabil- delayed, depending on the historical period of their ity language from its database search engine. While diagnoses. Today, difficulty in oral communication the gesture proved moving as a safeguard against the immediately earns an individual placement in special use of derogatory speech, it also rendered an enormous education classes, no matter how fluent he or she may amount of historical material invisible. The effect be on paper or computer. Our cognitive sciences have was to erase all written historical materials that relied labored long under the erroneous conception that a on terms such as crippled, demoniac, retarded, and lack of spoken language acquisition is directly related gimp—a sizable cache of materials, as it turned out. In to insufficient intellectual development where peak Language of Disability———1023 performance seems inevitably tied to assessments of Joel Peter Witkin and the deforming photography of oral fluency. To combat this prejudicial assumption, Diane Arbus. In the work of both of these visual por- many technologies that facilitate communication have traitists, disabled bodies are transformed into surreal been developed to provide vehicles for communica- landscapes that tend to emphasize the “grotesquery” tion. Such technologies serve to assist individuals who of human differences. As one disability scholar cannot speak, those whose speech is highly limited, argues, their depictions suggest that some impending and those who cannot point reliably. These prosthetic calamity is about to befall their artistic subjects. Yet, enhancements to communications have been widely as in the freak-show performances of old, these artis- debated with respect to the degree that they “simu- tic endeavors consciously seek out the staging of their late” the appearance of intelligence rather than reveal subjects in ways that artificially exaggerate disabili- the presence of thinking individuals wielding a lan- ties as “oddities.” Witkin’s work slices, dissects, and guage of their own. However, such politicized debates violates the bodies of his subjects, and Arbus’s pho- only tend to demonstrate the degree to which those tography uses alienating props such as Halloween who oppose facilitated communication deny humanity masks, hand grenades, claustrophobic environments, to those with speech disorders. and campy clothing to mock the figures depicted. Many prevalent disability clusters form around Such artificial designs trade on the situation of dis- kinds of language acquisition technologies and assis- abled people in bizarre environments where their dif- tance that can be readily marketed with payment ferences appear out of place and glaring. In all cases, assurances under different kinds of insurance reim- debasing artwork cultivates a visual grammar that bursement plans. Examples of this phenomenon encourages viewers to participate actively in the dehu- include hearing-impaired individuals and listening manization of disabled people. Such artwork conjures devices (i.e., hearing aids, cochlear implants), people private language codes that leave art’s consumers with with visual impairments and reading technologies little other than extreme emotional responses of (i.e., Braille, magnification technologies, and so on), distaste, danger, and/or discomfort. those diagnosed with developmental disabilities and Parallel efforts can be found in the language of various software technologies, and autistic individuals charity forums such as telethons and walkathons. In and communication hardware (i.e., portable speech these performance venues disabled people—usually boards, synthesized voicing technologies, and so on). depicted in a perpetually infantilized state as helpless To some extent, one may grow increasingly suspi- children—are identified as fates-worse-than-death cious at the beginning of the twenty-first century that and public contributions promise to eliminate future the technologies are now driving the diagnostic deter- individuals who might find themselves in the minations. One will rarely find a disabled individual “affected” category. Almost every major disability lacking a closet cache of useless technologies pre- now has its own charity “organ,” and, in the case of scribed by one overzealous medical or rehabilitation the most renowned disabilities—such as muscular professional or another. As history has demonstrated, dystrophy, cerebral palsy, and “mental retardation”— once a technology becomes available human commu- a plethora of charity organizations have evolved and nities find it difficult to resist the ever-present tempta- splintered off from each other. In order to become tion of application. successful in an industry that has become increasingly Finally, this entry will conclude with a discussion competitive, charity organizations participate in the of art and advertising, which serve as key contexts for fashioning of severe and pathos-ridden language public reception of people with disabilities. The term games in order to top the previous year’s contribu- enfreakment has been coined to designate the dire tions. For instance, American telethon barker Jerry atmosphere of media representation that artificially Lewis has been recorded as telling disabled people to generates atmospheric strangeness around disabled “stay in their homes” if they do not want to be pitied bodies. The most widely known examples of such by others. As this entry’s opening discussion of hate phenomena can be found in the sadistic body art of speech notes, such aggravated commentary deploys 1024———L’Arche language as a weapon that diminishes disabled Jeffreys, Mark. 1997. “Crippled Meters and Limping Feet: people’s lives in the midst of encouraging benevolent Towards a Disability Poetics.” Disability Studies Quarterly acts of monetary giving from viewers. Like their 17:238–245. Mairs, Nancy. 1996. Waist-High in the World: A Life among the scientific partner, genetics, these media displays pur- Nondisabled. Boston: Beacon. sue discourses of prevention as the only appropriate Mitchell, David and Sharon Snyder. 1997. “Exploring response to unwanted human variations. In doing so, Foundations: Languages of Disability, Identity, and Culture.” they often manage to avoid efforts at social provisions Disability Studies Quarterly 17:231–237. that would better allow existing disabled people to Snyder, Sharon L., dir. 1995. Vital Signs: Crip Culture Talks Back participate more fully in obstacle-ridden social con- (film). Chicago: Brace Yourselves Productions. ———, dir. 2004. Self Preservation: The Art of Riva Lehrer texts. Further, in “giving” of their hard-earned dollars, (film). Chicago: Brace Yourselves Productions. donors are encouraged to feel good about themselves Wilson, Cynthia and James Wilson. 2001. Embodied Rhetorics: as they contrast their more “fortunate” status with Disability in Language and Culture. Carbondale: Southern those who are described in terms that mark them as Illinois University Press. definitively “less fortunate.” By far, linguistic contexts for disability are over- determined by detrimental ascriptions. Perhaps, as some ᨘ L’ARCHE more pessimistic analysts contend, disability is a dif- ference that cannot be adequately accommodated L’Arche is an international federation of communities within the strictures of contemporary vocabularies. At dedicated to the service of people with intellectual the very least, an examination of disability terminol- disabilities. It was founded in 1964 in Trosly, a French ogy suggests the degree to which cultures rely on village north of Paris, by Jean Vanier (son of General perceptions of extreme human variation to test the Georges Vanier, former governor general of Canada), outer limits of acceptable humanity. Language is the who was born in 1928. L’Arche emerged as one indi- medium within which all bodies exist; as a result, vidual’s reaction to and attempt to address the dismal words create the contexts, the expectations, and the living conditions in institutions for the developmen- imaginative possibilities for the future cohabitation of tally disabled at the time. disabled and nondisabled bodies. The flexibility of our L’Arche began when Vanier welcomed two persons environments is greatly determined by the language with disabilities to live with him in a small home. His we use to access and construct livable spaces. Let us desire to share his life as a brother with these individ- hope that our language of disability can become as uals, Raphael and Philippe, attracted others, and soon flexible as the bodily variations it references. a community of several homes and workshops grew in the same village. Later, some of those living in Trosly —Sharon L. Snyder and left to begin similar communities in other parts of the David T. Mitchell world, at the same time maintaining strong links of See also Facilitated Communication; Sign Language. friendship and support with one another. In 1972, L’Arche was constituted, and by the beginning of the Further Readings twenty-first century it included more than 113 com- Brueggemann, Brenda Jo. 1999. Lend Me Your Ears: Rhetorical munities in 30 countries around the world. The orga- Constructions of Deafness. Washington, DC: Gallaudet nization’s name, French for “The Ark,” is taken from University Press. the Old Testament story of Noah. It signifies a place Dutton, Denis. 1996. “What Are Editors For?” Philosophy and of refuge, of salvation from the flood. The name was Literature 20:551–566. at first applied to the original home begun by Vanier; Gerber, David A. 2000. “Finding Disabled Veterans in History.” In it was later given to that first community he founded. Disabled Veterans in History, edited by David A. Gerber. Ann Arbor: University of Michigan Press. L’Arche is distinctive in that its style of community Hevey, David. 1992. The Creatures That Time Forgot: living is based on relationships, wherein the people Photography and Disability History. New York: Routledge. with disabilities, called “core members,” and people Laryngectomy———1025 without disabilities, “assistants,” live in an atmos- surgical procedure to remove the larynx (voice box), phere of trust, security, and mutual affection. The core which is situated above the trachea (windpipe) and members are valued and accepted for who they are in front of the esophagus (gullet or food pipe). This and the gifts they bring. The people with disabilities procedure is often done to treat larynx cancer if are not viewed as “residents” cared for by “staff.” chemotherapy is unsuccessful. Laryngectomies may Assistants do not view their role as only that of also be performed on people with gunshot wounds, caregiver, but rather as one of sharing life with people severe fractures, or other trauma. with disabilities. Assistants usually commit to live in A laryngectomy may be partial or total. In a partial a L’Arche community for one year. Many stay longer, laryngectomy, only a portion of larynx or the surround- and some assistants have chosen to live in L’Arche ing muscles is removed. Although the voice is not lost communities as a life vocation. and the individual may retain his or her usual patterns of L’Arche communities are faith based, Christian in speech and swallowing, the voice may sound weak or origin, and welcome people of all faiths and religions. hoarse. The larynx is completely removed in total laryn- The communities vary in size within and among the gectomy, which alters breathing and communication. countries around the world, having from one to eight A permanent opening (stoma) in the front of the neck homes per community, and they are located in both allows the individual to breathe, but speech is altered. urban and rural areas. L’Arche communities celebrate People who have had laryngectomies are known as each person as being of unique and sacred value and laryngectomees; some refer to themselves as “larries.” strive to create homes where faithful relationships Laryngectomees are taught one of three alternative are nurtured, based on forgiveness and celebration. The ways of talking to restore communication: esophageal same sense of communion unites the various L’Arche speech, tracheoesophageal speech, and electronic communities throughout the world. Bound together speech. The goal is to learn a new speaking technique by solidarity and mutual commitment, they form a that is most comfortable for the individual. worldwide family. Esophageal speech is the oldest method of voice Although L’Arche has experienced tremendous restoration, having been used for more than 100 years. growth over the past 40 years, this growth has been In this technique, the individual draws in air through primarily organic. L’Arche does not seek to expand the mouth and forces the air into the esophagus by greatly; rather, it seeks to serve as a sign of hope to locking the tongue. The process is similar to a con- society in a divided world. trolled burp. Esophageal speech is less costly than other methods because it requires no equipment or —Clarissa Schoenberg surgery; however, the vocal phrasing and low volume See also Community Living and Group Homes. of the speech that results may make it difficult for others to understand the individual. Further Readings Tracheoesophageal speech is similar to esophageal Vanier, Jean. 1979. Community and Growth. New York: Paulist speech, but the individual uses a device to redirect air Press. from the trachea into the esophagus. The device is inserted at the stoma site with a tracheoesophageal Websites puncture (TEP): A small shunt is placed through an L’Arche Internationale, http://www.larche.org opening between the trachea and esophagus. A small L’Arche USA, http://www.larcheusa.org one-way valve placed into this opening allows the laryngectomee to force air from the lungs into the mouth. This method results in a more natural voice ᨘ LARYNGECTOMY than does esophageal speech, and voice restoration occurs within two weeks of surgery. Theodore Billroth of Vienna performed the first Electronic speech involves the use of an electronic successful laryngectomy in 1873. Laryngectomy is a or artificial larynx, a device first developed by Johann 1026———Latino Health

Czermak in 1859 to create a clearer voice and increase is made up of people from many different races, vocal volume. There are two types of artificial larynxes. cultures, and countries of origin. Within the U.S. pop- The extraoral type looks like a flashlight; it has ulation, the number of Latinos is currently growing. batteries in the handle and a vibrating disk on the end The majority of U.S. Latinos are of Mexican descent, that the laryngectomee presses against the outside of and most live in the southwestern region of the the upper neck. The intraoral type consists of a shirt- country. In addition, many people of Central American pocket-sized battery pack connected to a sound emit- and Puerto Rican descent live on the U.S. East Coast ter by a small wire that is held in the palm of the hand. and many of Cuban descent live in Florida. Growing Following laryngectomy, some people experience numbers of Latinos are also immigrating to many mid- depression and social withdrawal due to the changes western and southern states. The majority of Latinos in their voices and reactions of others. A number of who migrate to the United States do so in search of support groups have been established for laryn- jobs that will allow them to support their families, both gectomees (e.g., WebWhispers Nu-Voice Club, the in the United States and in their countries of origin. International Association of Laryngectomees), and many find that joining such groups is beneficial. Most laryngectomees successfully return to their jobs and INTERNATIONAL LATINO resume most of their usual activities. HEALTH AND DISABILITY —Kelly Hsieh A major cause of underdevelopment in many countries is repeated episodes of illness and long-term disability. Further Readings Poor health and disability among Latino groups in developing countries are often the consequences of Lombard, Lori E. 2003. “Laryngectomy Rehabilitation.” Retrieved infectious diseases and noncommunicable conditions April 7, 2005 (http://www.emedicine.com/ent/topic312.htm). Ragnarsson, Kristjan T. and David C. Thomas. 2000. “Principles such as malnutrition, perinatal conditions, mental ill- of Cancer Rehabilitation Medicine.” Pp. 971–985 in Cancer ness, diabetes, cancer, and cardiovascular diseases. Medicine, edited by R. C. Bast, D. W. Kufe, R. E. Pollock, Malnutrition and the spread of infectious diseases are R. R. Weischselbaum, J. F. Holland, and E. Frei. Hamilton, the results of inadequate sanitation, lack of immuniza- ON: BC Decker. tion, and poverty. Poor nutrition, lack of prenatal care, Townsend, Courtney M., Daniel R. Beauchamp, Mark B. Evers, and environmental toxins cause perinatal conditions. Kenneth L. Mathox, and David C. Sabiston, eds. 2001. Sabiston Textbook of Surgery: The Biological Basis of Chronic diseases such as cardiovascular diseases and Modern Surgical Practice, 16th ed. Philadelphia: W. B. diabetes are increasingly becoming major contributors Saunders. to disability and mortality, both within the United States and internationally. Latinos in Latin American countries Websites and in the United States are at increased risk for these American Cancer Society, http://www.cancer.org diseases due to a sedentary lifestyle, high-fat/calorie International Association of Laryngectomees, http://www diet, hypertension, high cholesterol, and obesity. .larynxlink.com/main/ial.htm WebWhispers (dedicated to laryngectomee rehabilitation), http://www.webwhispers.org U.S. LATINO HEALTH AND DISABILITY

According to the U.S. Census, 15.9 percent, more ᨘ LATINO HEALTH than 11 million, Latinos age five years and older have some kind of disability. Data from the mid-1980s LATINO ETHNICITY AND IMMIGRATION indicate that the highest rates of anencephaly, spina bifida without anencephaly, and Down syndrome in The terms Latino and Hispanic refer to people who are the United States occurred among Latinos. Chronic of Latin American or Spanish descent. There is a great conditions are major causes of disability among Latinos degree of heterogeneity among Latinos, as this group living in the United States. Most often, disabled Latino Health———1027

Latinos are of school or working age. Furthermore, the Latinos in general are poorer, less educated, and less U.S. population of Latinos includes 1.6 million people likely to have health care coverage than are members age 65 and older. The Hispanic elderly population is of other ethnic groups in the United States. In 1999, the second-fastest-growing aging population. As the the per capita income for all people 16 years of age population ages, the number of Latino with disabilities and older in the United States was $21,587, whereas will grow as well. The leading causes of disability among Latinos it was almost half that ($12,111). among older adults include Alzheimer’s disease, About 45 percent of Mexican Americans working arthritis, cancer, cardiovascular disease, and diabetes. full-time reported earning less than $15,000 a year. More Latinos have arthritis, the leading cause of dis- Just over half of Latinos have at least a high school ability in the United States, and activity limitations diploma, whereas just over 85 percent of non- from arthritis than do non-Hispanic Whites. The preva- Hispanic Whites have at least a high school diploma. lence of type 2 diabetes is 10.2 percent among Latinos Latinos also have less access to health care: More than in the United States, a rate that is two to five times 33 percent of Latinos in the United States do not have greater than that among non-Hispanic Whites, and health care coverage. Research has also shown that many disabling secondary diabetes-related conditions Latinos are less likely than members of other ethnic affect Hispanics as well. Another cause of disability groups to use public aid, even if they are eligible, for among Latinos is occupational injuries. It is estimated reasons of pride, fear of questions about their immi- that there are more than 3 million migrant and seasonal grant status, and lack of awareness of the system. The farmworkers in the United States, the majority of negative effects of lack of resources and access are whom are Latino, and large numbers of Latinos work compounded for Latinos with disabilities, who expe- in high-risk industrial settings as well, such as animal rience even more difficulty with access to health care processing plants. Occupational injuries are not and obtaining employment. They also experience dif- uncommon, and many Latinos do not seek treatment ficulty in accessing public facilities and transporta- for fear of facing questions about their immigrant tion. Language barriers and cultural differences status and perhaps losing their jobs. among Latinos with disabilities may also impede their access to health care, their ability to obtain assistance Prevention and Treatment from service agencies, and their ability to obtain employment. In addition, it is estimated that 10,000 Compared with non-Hispanic Whites, Latinos in Mexicans cross the border into the United States every the United States are less likely to engage in preventive day, and little is known about the prevalence of dis- practices and to obtain screenings to detect chronic ability among recent immigrants or about the potential disease risk factors and signs of disease. That is, they barriers that those with disabilities face. are less likely to regularly obtain routine checkups, to undergo blood pressure and blood cholesterol screen- ing, or to be screened for colon, prostate, cervical, and CULTURAL BELIEFS AND VALUES breast cancer. There is also evidence that rehabilitation outcomes are less successful among Latinos than among Cultural values about health and disability have been any other ethnic groups. Many social, economic, and shown to affect the lifestyle choices that people make, cultural factors influence the preventive and screening decisions to access health care, and the services that health practices of Latinos. people with disabilities seek out. It is important to note that among Latinos in the United States there is a great deal of heterogeneity in cultural beliefs and val- Factors Affecting Health and ues. Differences in ethnicity, national origin, gender, Disability among Latinos income, and education, as well as in religion and level It is well established that low income, low level of of acculturation (defined as the process of adopting education, and lack of access to health care are asso- the beliefs, behaviors, and values of the dominant cul- ciated with chronic disease risk factors and mortality. ture), all influence cultural beliefs and values. 1028———Latino Health

Religion plays an important role in Latino cultures, Beliefs about Causes of Disability and Illness as it does in most cultures. Religious beliefs may The beliefs of Latinos vary in respect to the causes influence individuals’ views of and attitudes toward and treatment of disability, the perception of the sever- illness and disability. Latinos may see disability or ill- ity of disability, and the impact of disability on life. ness as a test from God, as God’s will, or as a punish- Latinos living in the United States hold varying degrees ment. Religious beliefs can also provide a positive of both medical and folk beliefs about the causes and framework through which to view disability and ill- treatment of illnesses and disability. Medical beliefs ness. Many Latinos believe that prayer, pilgrimages about causality are related to genetics and accidents at to holy sites, and vows can aid in curing or ameliorat- birth or in childhood. Folk beliefs about the causes of ing symptoms, and many who are ill or disabled find disability and illness include such elements as imbal- sources of support in faith and in organized religion. ance between hot and cold, flies in a home, the evil eye Religious leaders and fellow parishioners provide (mal de ojo), and dreams during pregnancy. Bad air, everything from emotional support to instrumental germs, and poverty are blamed for symptoms and ill- support. Research has shown that faith in God pro- nesses. Psychological states such as worry, fear (susto), vides a higher level of support than does religion as an anger, and envy may be labeled as causes of symptoms institution. It is common for an individual to experi- and disease, as well as turmoil in the family, amorality, ence an increase in faith with the onset of an illness or and ethical violations. Faith in God, fatalism (a belief disability, but disability or illness may also contribute that disease onset is a result of fate, and thus individuals to a loss of faith. have little or no hope of preventing or controlling dis- Latino cultures in general are collectivist. They are ease), and personalismo (personal relationships) both guided by duties to the group rather than to the individ- influence health conceptualization and lead Latinos to ual, and collectivist norms influence how Latinos avoid or put off seeking treatment. Some Latinos use perceive health and disability. The value of placing home remedies involving herbs, purification rituals the needs of the family above those of the individual involving holy water or candles, and the services of spir- influences Latinos’ view of the world. Close extended itual healers to treat illness or disability before or in place families are more commonplace among Hispanics than of seeking medical help. One study on the cultural norms they are among non-Hispanic White Americans. related to Latinos’ delayed use of medical care when Latinos often turn to family members for social support chronic disease–related symptoms are present found that and advice about health. A family’s beliefs and knowl- the factor with the most pronounced effect on care seek- edge about preventing and controlling disease shape the ing was the perceived seriousness of the symptoms. individual members’ health beliefs and behaviors. Familial roles also influence conceptualization of disability. For example, if a person with a disability is Cultural Competence able to fulfill his or her traditional family roles, other Health professionals in the United States are increas- family members may not think of that person as ingly recognizing that they need to be aware of the social having a disability. The idea of being “normal” can be and cultural factors that influence how Latinos perceive related more to being able to fulfill roles and expecta- health and disability. To improve the health and well- tions than to having an illness or being impaired. A being of Latinos with disabilities, research is needed to person with an impairment may be considered a examine the diverse health-related beliefs among various unique individual rather than described as disabled. Latino groups. Although it is important to be sensitive to Expectations related to gender roles also influence cultural beliefs, health professionals should avoid assum- attitudes and behaviors related to disability and ill- ing that every Latino has traditional beliefs. Culturally ness. For example, women may deny the impact of competent and bilingual service providers are also illness or disability because of a cultural expectation needed to serve this population effectively. of aguantar (a verb meaning “to endure”). Machismo among men may contribute to denial of disability or —Janine M. Jurkowski illness and may cause them to avoid seeking services. See also Cultural Context of Disability. Leadership———1029

Further Readings His most famous book, Art to Know the Men by the Balcazar, F. E., C. B. Keys, and Y. Suarez-Balcazar. 2001. Aspect: The Physiognomy (1775–1778), was a two- “Empowering Latinos with Disabilities to Address Issues volume work that included silhouettes and illustrations of Independent Living and Disability Rights: A Capacity of faces in profile exemplary of character traits such as Building Approach.” People with Disabilities: Empowerment greed, criminality, melancholy, miserliness, and virtue. and Community Action 21:53–70. He also included his own profile as well as those of cel- Chavez, Gilberto F., Jose F. Cordero, and Jose E. Becerra. 1988. ebrated individuals of his time whom he admired. The “Leading Major Congenital Malformations among Minority Groups in the United States, 1981–1986.” MMWR basis of his system of physiognomy was Lavater’s belief Surveillance Summaries 37(SS-3): 17–24. that the body communicates the nature of the soul. Garcia, Jorge G., and Maria C. Zea, eds. 1997. Psychological Along these lines, he once argued, “Action, looks, Interventions and Research with Latino Populations. Boston: words, steps, form the alphabet by which you may spell Allyn & Bacon. character.” Significantly, several prominent disabled Helmick, C. G., R. C. Lawrence, R. A. Pollard, E. Lloyd, and people of the eighteenth and nineteenth centuries S. Heyse. 1995. “Arthritis and Other Rheumatic Conditions: Who Is Affected Now and Who Will Be Affected Later?” opposed Lavater’s theory on the basis of its prejudicial Arthritis Care and Research 8:203–211. relation to disabled bodies. Disabled critics of this Molina, C. W., and M. Aguirre-Molina, eds. 1994. Latino Health theory included the “hunchbacked” German mathe- in the U.S.: A Growing Challenge. Washington, DC: matician Georg Christoff Lichtenberg (1742–1799), who American Public Health Association. mocked Lavater and other physiognomists of his time Salas-Provance, M. B., J. Good Erickson, and G. Reed. 2002. by explaining that they took their own bodies as the “Disabilities as Viewed by Four Generations of One Hispanic Family.” American Journal of Speech-Language Pathology barometer of morality. According to Lichtenberg, “God 11:151–162. created man in His own image, says the Bible; philoso- Skinner, D. G., V. Correa, M. Skinner, and D. B. Bailey Jr. 2001. phers reverse the process: they create God in theirs.” “Role of Religion in the Lives of Latino Families of Young Children with Developmental Delays.” American Journal of —David T. Mitchell Mental Retardation 106:297–313. U.S. Bureau of the Census. 2000. American FactFinder. Retrieved See also Georg Christoff Lichtenberg. March 2, 2004 (http://www.census.gov/main/www/cen2000 .html). Wright, T. J. and P. Leung. 1993. Meeting the Unique Needs of ᨘ LEADERSHIP Minorities with Disabilities: A Report to the President and the Congress. Washington, DC: National Council on Disability. The term leadership is used to represent an office Websites or position of leader or the ability to guide, direct, or influence people. By definition, leadership involves World Health Organization, http://www.who.int/en the holding of an elevated office or position—that is, leaders have a higher status than do those whom they are leading. Further, definitions of leadership stress ᨘ LAVATER, JOHANN KASPAR that leadership is a group process that involves inter- (1741–1801) action between at least two persons as they work Swiss scientist and poet toward a common goal. In this way most directly, leadership has done much for the field of disability. Johann Kaspar Lavater was a Swiss scientist and poet This entry discusses types of disability leadership and who wrote in German. Lavater developed an influen- their effects, which include advances for both leaders tial science of physiognomy that linked facial counte- themselves and the general disability community. nance and bodily appearance with moral disposition. While physiognomy itself was not new—some schol- TYPES OF DISABILITY LEADERSHIP ars place aspects of this belief as far back as the writ- ings of the ancient Greeks—Lavater’s system sought Specific to the field of disability, leadership has to formalize a common practice as empirical method. taken three major forms: leadership by persons with 1030———Leadership disabilities; leadership by parents, family members, such as the Parents Exchange, an informational, and caretakers of persons with disabilities; and lead- referral, and advocacy organization. Another example ership of policy makers surrounding disability-related is the Kennedy Foundation, which grew in part out of issues. Eunice Kennedy Shriver’s experiences with her sister First, many people with disabilities have taken Rosemary’s intellectual disability and continues to leadership roles themselves in a number of capacities, provide supports to serve those with mental retarda- including in large organizations such as the American tion. These groups are essential to supporting people Association of People with Disabilities as well as with disabilities as well as educating the able-bodied in smaller grassroots community groups. As one community regarding the strengths and needs of example, the centers for independent living (CIL) individuals with disabilities. Similar trends have been movement began in the 1960s and 1970s due in large evidenced internationally. For example, in the United part to the leadership of Ed Roberts, an individual Kingdom a group of parents of children with disabili- with an extensive physical disability as the result of ties formed the National Autistic Society in order to contracting polio as a child. Roberts’s leadership provide information and support to other family experience began with his advocating for his own members of individuals with autism. equal access to an education and moved on to include The third form of leadership in the area of disabil- his advocating for the rights of people with disabilities ity has been that provided by policy makers and gov- all over the United States. Another example is Deng ernment agencies. For example, the National Institute Pufang, himself a wheelchair user, who founded the on Disability and Rehabilitation Research (NIDRR) China Disabled Persons’ Federation (CDPF) in 1988. has been a strong leader in advocating for the rights of The CDPF works to protect the human rights of and equal services for individuals with disabilities. persons with disabilities as well as promote their NIDRR has developed funding priorities that, among equal participation in society. In 2003, Deng Pufang others, promote leadership training for people with was acknowledged with the UN Prize in the Field of disabilities. These priorities continue to ensure that Human Rights for the extensive work he has done for disability remains an integral part of the research people with disabilities in China through legislation, agenda in the United States. Another example of lead- programs, and activities. ership by government agencies occurred in Australia Along these lines, much has been done to encour- during the early 1970s, when a larger community age the leadership of people with disabilities, includ- health movement took place. Under the Whitlam ing a number of national and local conferences that administration, local community health projects were have chosen as a major theme the leadership of people made directly accountable to the communities they with disabilities. In addition, a variety of disability served. There was community involvement at every leadership forums and training programs exist across level of service development and delivery, which the United States and the larger international community, allowed channels of communication to open up including in places such as Illinois, Massachusetts, among service providers, government officials, and Michigan, Oregon, and Thailand. The majority of consumers in areas such as disability and mental ill- these projects have been designed to help youth or ness (among others). These types of policy initiatives adults with disabilities uncover or further develop provide a framework for both national and local orga- their leadership skills, sometimes in relation to a nizations to strive to meet the needs of individuals specific area, such as independent living. with disabilities more effectively. Second, parents, other family members, and care- takers of persons with disabilities have also partici- EFFECTS OF DISABILITY LEADERSHIP pated as leaders in the disability community. Parents of children and adults with disabilities have been Positive effects of disability leadership can be seen responsible for beginning many support organizations, both in leaders themselves and in the broader disabil- including United Cerebral Palsy, as well as networks ity community. First, serving as leaders can benefit Leadership———1031 leaders themselves. Much general research conducted leadership for people with disabilities, by people with across a variety of populations has found that helping disabilities. The NCIL has been a leader in the disabil- others can have a positive impact on the person provid- ity community in terms of building local community ing the help. Specific to disability, serving as a leader bases as well as advocating nationally for disability may benefit the leader in terms of self-determination, rights. power, and control. For example, leadership training Community impacts can also be seen on a smaller has been used to promote recovery in persons with scale. For example, leadership training programs psychiatric disabilities. Such training may lead to often foster the development of networks of individu- decreases in psychiatric symptoms as well as increases als who have strong leadership skills. Such networks in self-efficacy, community living skills, and empow- can then be effective tools for outreach and education erment. Similarly, serving as a peer leader has been of other people with and without disabilities about found to facilitate adjustment to a new disability among disability rights in the community. individuals with spinal cord injury. Leadership train- In all of the examples presented above, leadership ing can also open the door to further career opportuni- has facilitated the building of empowerment in the ties. For example, in one leadership training program, general community, which can also help new people graduating leaders had the opportunity to join local develop as leaders in their communities, creating a advocacy organizations on a formal basis as speakers solid feedback loop. Leadership serves as an effective who would advocate for effective supports for people and essential tool to effect change and advocate for a with disabilities. variety of rights for people with disabilities. Second, leadership can also benefit the broader —Erin Hayes and disability community in terms of advancements in the Jose Mendez area of equal access and equal rights, as a catalyst toward person-directed services, and as a way to build See also Advocacy; Advocacy, International; Advocacy a solid sense of disability community and identity. Movements: France; Advocacy Movements: Germany; Perhaps the most significant impact that leadership in Empowerment and Emancipation; International Disability the disability community has had is seen in the pas- Organizations; Peer Support; Roberts, Ed. sage of the Americans with Disabilities Act (ADA) in Further Readings 1990. The development of leadership in the disability community in the United States led to the passage of Bullock, Wesley A., David S. Ensing, Valerie E. Alloy, and the ADA, and in turn the ADA has raised the quality Cynthia C. Weddle. 2000. “Leadership Education: of life for many people with disabilities. Changes such Evaluation of a Program to Promote Recovery in Persons with Psychiatric Disabilities.” Psychiatric Rehabilitation as better access to employment, transportation, hous- Journal 24(1):3–12. ing, education, communications systems, and public Chemers, Martin M. 2000. “Leadership Research and Theory: A facilities for people with disabilities have all resulted Functional Integration.” Group Dynamics: Theory, Research, from leadership in the disability community. More- and Practice 4(1):27–43. over, the passage of the ADA in the United States Independent Living USA. 1995. “Ed Roberts: The Father of foreshadowed growing interest in disability rights Independent Living.” Retrieved April 12, 2005 (http://www .ilusa.com/links/022301ed_roberts.htm). legislation in other countries, such as Australia and Powers, Laurie E., Nancy Ward, Lisa Ferris, Tia Nelis, Michael Colombia. Ward, Colleen Wieck, and Tamar Heller. 2002. “Leadership Another example of the broader community impact by People with Disabilities in Self-Determination Systems of leadership is the CIL movement, which is dedicated Change.” Journal of Disability Policy Studies 13(2): to helping people with disabilities live independently 125–133. and become productive, fully participating members Taylor, Pat. 1994. “Leadership in Education: A Review of the Literature.” Emergency Librarian 21(3):13–17. of society. The National Council on Independent United Cerebral Palsy. 2003. “About UCP: History.” Retrieved Living (NCIL), which was formed in 1982 in the September 19, 2003 (http://www.ucpa.org/ucp_generalsub United States, provides an excellent example of .cfm/1/3/42). 1032———League of the Physically Handicapped

Zollers, Nancy J. and Yueh-Hsia Yu. 1998. “Leadership in an ᨘ LEARNING DISABILITY Able-Bodied Social Context: One Principal’s Impact on an Inclusive Urban School.” Disability & Society 13:743–761. Coming to agreement on the definition of learning Websites disability (LD) has been a challenge since the 1960s. Various groups, such as the Learning Disability Associ- Independent Living USA, http://www.ilusa.com United Cerebral Palsy, http://www.ucpa.org ation (LDA), provide their own definitions. However, the most widely used definition in the United States is that provided by the U.S. Department of Education ᨘ LEAGUE OF THE PHYSICALLY under the regulations of the Individuals with Disabili- HANDICAPPED ties Education Act (IDEA) of 1997. According to the IDEA, the term learning disabilities refers to a group The League of the Physically Handicapped was a of neurological disorders that impact one or more of grassroots organization of disabled activists that the brain’s basic functions used to understand and operated in New York from 1935 to 1938. In 1935, in interpret language, symbols, and gestures; such disor- the depths of the Great Depression, President Roosevelt ders are typically identified during the elementary established the Works Progress Administration (WPA) school years. The manifestation of these neurologically to provide jobs for the unemployed. However, among based conditions can be observed in an individual’s the groups considered “unemployable”—and thus difficulty with reading, writing, listening, speaking, ineligible for WPA jobs—were people with disabili- completing mathematical functions, fine motor skills, ties. In response to this policy, six young people with and even interpreting social cues and gestures. The disabilities held a sit-in at the offices of New York term specific learning disability (SLD), which is City’s Emergency Relief Bureau. At first merely aim- sometimes used instead of the more general term ing to speak with the bureau’s director, they escalated learning disability, refers to a severe difficulty with their demands as the sit-in continued. An ongoing one area of life and learning without any accompany- picket line of supporters at times swelled to hundreds, ing difficulty with others. For example, someone with with thousands of onlookers. Six days later, when an SLD in reading may experience great difficulty those sitting in finally met with the bureau director, with written print but be able to complete complex the nascent group was demanding jobs in unsegregated mathematical computations and manipulate objects environments and explicitly rejecting charity. that require great dexterity. The League grew from this core of activists. Historically, three conditions have been considered Focused on employment rights, the organization engaged in identifying a learning disability: (a) the presence of in picketing, public education, and meetings—often a discrepancy between potential and achievement, confrontational—with public officials. The group also (b) the presence of intraindividual differences, and wrote a 10-page “Thesis on Conditions of Physically (c) the presence of average to above-average intelli- Handicapped.” Prefiguring later thinking, this work gence. These conditions pose a problem for profes- asserted that discrimination is the cause of disabled sionals working in the area of LD. Most notably, people’s unemployment and critiqued the charity procedures for determining whether a discrepancy model, especially sheltered workshops. exists are a source of great debate that centers on issues related to IQ testing and performance mea- —Anne Finger sures. As a result, the IDEA, the federal legislation in See also Activism. the U.S. that is designed to ensure that individuals up Further Readings to the age 21 receive free appropriate public education that meets their needs, calls for a comprehensive, Longmore, Paul and David Goldberger. 2003. “The League of the interdisciplinary assessment of strengths and needs Physically Handicapped and the Great Depression: A Case Study in the New Disability History,” in Paul Longmore, for any student thought to have an LD. One critical Why I Burned My Book and Other Essays on Disability. factor to rule out in making a diagnosis of LD is that Philadelphia: Temple University Press. the problems themselves are a result of LD and not League of the Physically Handicapped———1033 due to other disabilities or societal factors. However, skills; it limits the individual’s ability to engage in LDs can coexist with nonintellectual disabilities, and handwriting, drawing, typing, sequencing, and even in many schools it is common to find students with daily self-care. both LDs and emotional behavioral disorders. According to the Learning Disability Association, More than 50 percent of individuals in U.S. schools ADD and brain injury also fall under the category of who receive special education services have some type learning disability. ADD affects an individual’s ability of LD. Adults who have learning disabilities may also to focus attention for any prolonged period of time; if go undiagnosed and thus experience great difficulties. hyperactivity is also observed, attention deficit/hyper- Their undetected LDs may have negative impacts on activity disorder (ADHD) may be diagnosed. In recent their ability to work, engage in social relationships, years, ADD and ADHD have become increasingly and experience success. Because LDs are invisible, recognized. Until about 20 or 30 years ago, young they pose some interesting challenges for individuals people with similar behaviors were identified as with LDs as well as their families, professionals work- hyperactive, impulsive, or disobedient. Now there is ing with them, and their peers and coworkers. An LD greater understanding of how this condition becomes can affect every domain of an individual’s life, and, as or creates a learning disability. Given that brain injury such, interventions designed to support success may affects an individual’s neurological development, it is vary greatly for different individuals. also considered a learning disability. Specific LD disorders include dyslexia, dyscal- Since the 1990s, a new group of individuals has culia, dysgraphia, dysnomia, and dyspraxia, and in been considered as having a learning disability: indi- recent years the growing category of attention deficit viduals who are simultaneously gifted. Gifted LD disorder (ADD) has been included on this list. Indi- individuals do not typically fit the criteria of experi- viduals with the best-known type of LD, dyslexia, expe- encing failure, but they do meet the criteria for the rience great difficulty understanding language and presence of a discrepancy. In other words, individuals using various language-related skills, most commonly who are gifted LD may easily use their intellectual reading, writing, spelling, and speaking. This condi- potential to compensate for their learning disabilities. tion at times affects an individual’s ability to interpret While the above description of LD conditions pro- mathematical symbols to determine operations and vides an outline of the various learning characteristics may also influence the ability to interpret social cues of individuals identified as having LDs, intervention (e.g., facial expressions). The next most common options also need to be considered. Once a learning form of LD is dyscalculia, which has the same effect disability exists, it will not go away or be “cured” as an on an individual’s learning and understanding of individual matures. The goal of intervention is to teach mathematical concepts and operations. Although the skills to address the challenges that are presented by impact of this LD on a person who is in school is sig- the LD. Teaching the use of multiple learning modali- nificant, it does not end once the individual exits the ties—visual, tactile, auditory, and kinesthetic—helps school setting. It can be observed in disorganization to “educate the brain,” the source of this neurologi- with balancing a checkbook, poor money manage- cally based disability. The use of assistive technology ment (e.g., late payments), and scheduling errors. devices is becoming increasingly common among edu- Dysgraphia affects an individual’s ability to develop cators and employers for supporting individuals with written language and use it as a mode of communica- LD. The technology that allows assistive devices to tion. Dysnomia refers to difficulty experienced with convert speech to written print, predict words, and/or the recollection of names, places, or specific object read text is advancing daily. Such devices can open words. This form of LD can have a negative impact doors for individuals who may not be able to read or on children and youth, but it has a greater influence write but have excellent comprehension. They can on adults as they attempt to communicate with make the difference in whether an individual with LD coworkers, supervisors, clients, and related groups. can access postsecondary education, participate in Dyspraxia, the least common of the learning disabil- competitive high-level employment, and in other ways ities, is related to the manipulation of fine motor demonstrate his or her full potential. 1034———Leonard Cheshire

Brain research demonstrates the neurological basis greater understanding of both the neurological basis for learning disabilities and their impact on informa- for a learning disability and its vulnerability to the tion processing, memory, and performance. However, impacts of curriculum, poor education, and cultural symptoms associated with a learning disability can bias is crucial. also be observed as a result of gaps in learning and —Teresa Garate of biased evaluations rather than the presence of a neurological condition. Consequently, there has his- See also Dyslexia. torically been an overrepresentation of ethnic minor- ity individuals identified as having LDs, as a result of Further Readings both cultural bias and language bias. For example, Berninger, V. W. 1992. “Defining Reading and Writing professionals can easily misinterpret the characteris- Disabilities with and without IQ: A Flexible, Developmental tics of a potentially English-proficient student during Perspective.” Learning Disability Quarterly 15:103–118. the emergence of a second language as a language ———. 2001. “Understanding the ‘Lexia’ in Dyslexia: A learning disability. However, if individuals go undiag- Multidisciplinary Team Approach to Learning Disabilities.” Annals of Dyslexia 51:23–48. nosed, they may experience great difficulties as adults Kavale, K. A., S. T. Forness, and T. C. Lorsbach. 1991. “Definition living with undetected LDs that have the potential to for Definitions of Learning Disabilities.” Learning Disability limit their success in many ways. Quarterly 14:257–266. The term learning disability, and the concept to which it refers, is relatively new. Learning disabil- Websites ity was identified as a specific condition in the 1960s Learning Disability Association, http://www.ldanatl.org by a group of parents and advocates who observed unique learning styles in their children. The children in question had at least average intelligence and ᨘ LEONARD CHESHIRE did not have physical or sensory disabilities. Profes- sionals were at a loss to provide effective educational Leonard Cheshire is the largest charitable supplier of interventions for these individuals. Since that time, services for disabled people in the United Kingdom. It the recognition of this condition as a disability has also operates globally. Founded by the World War II extended beyond the United States and is now recog- bomber pilot and war hero Leonard Cheshire, VC, in nized internationally through brain research. 1948, it greatly influenced the pattern of social care As with other disabilities, the presence of a learn- provision made for disabled people in the second half ing disability has a significant impact on an individual of the twentieth century internationally. This was par- for life. Unlike other disabilities, LDs are misunder- ticularly based on group living in residential institu- stood as a result of their invisible nature and broad tions, which greatly restricted disabled people’s scope. Changes in the wording of legislation and sub- opportunities to shape their own lives. tle differences in definitions, whether theoretical or In the 1960s, the resistance of disabled people who operational, can affect the diagnosis of LD. Students lived in one Leonard Cheshire home, Le Court, played with LD are protected under the IDEA in the United a major role in establishing the British disabled States, but adults must use the protections of the 1990 people’s movement and the development of disability Americans with Disabilities Act. Because of the emancipatory research. The introduction of “commu- ADA definition of disability, individuals with LD may nity care” legislation in the early 1990s in Britain was not actually be protected unless they can prove that intended to support disabled people to live in their their disability has a negative impact on at least one own homes and neighborhoods. major life function. In school, at workplaces, and in In the late 1990s, the Leonard Cheshire organiza- their communities, individuals with any type of LD tion established the Disabled People’s Forum, which are constantly pressured to perform actions that are is run by disabled people and works within the orga- in direct contradiction to their disability. Therefore, nization to support disabled people’s involvement and Leprosy———1035 empowerment. The process of democratizing the and misconceptions related to the disease have organization, increasing the control of disabled people, triggered irrational reactions that have proven difficult improving the quality of services, and enabling dis- to overcome. Fateful changes in nomenclature began abled people to live independently, is still proving in late antiquity. The Greek category of “scaliness” problematic, however. Leonard Cheshire’s experience (λε’πρα), which covered a wide range of skin condi- highlights some of the difficulties of making change tions, and the analogous Hebrew zarã’at, which bibli- from within traditional charitable organizations for cal law termed unclean and cause for ritual isolation, disabled people. merged into the Latin term lepra. The most ominous confusion ensued when the term became interchange- —Peter Beresford and able with elephantia centuries after the Romans noted Fran Branfield this disease as new, foreign, and presenting symptoms See also Community Living and Group Homes; Empowerment matching those of HD; they reported that it caused hor- and Emancipation; Independent Living. ror and that they feared the transmission of this evil. Horror and revulsion interacted with the belief that Further Readings physical deformity implied moral perversity. Deep Beresford, Peter and Fran Branfield. 2005. From Involvement to fear persisted as long as infectiousness was miscon- Independent Living. Leeds, UK: Disability Press. strued as contagiousness. The highly visible effects of the disease, together with its endemic and frequently Websites clustered incidence, led observers—and historians— University of Leeds, Center for Disability Studies, http://www to overestimate the epidemic dimensions beyond the .leeds.ac.uk/disability-studies maximum documented ratio of patients to population. The tendency of the disease to occur in families and to strike children was confused with heredity. The steady ᨘ LEPROSY advance of symptoms, obscuring the secondary infec- tions that actually were the lethal threats to the weak- Leprosy is increasingly known by the less offen- ened body, led to the assumption that death was the sive name of Hansen’s disease (HD). It was the first natural and inevitable outcome of leprosy and that, chronic disease to be attributed to a bacterial cause, therefore, patients were beyond medical help. when the Norwegian physician Gerhard Armauer The abandonment of patients found its most dra- Hansen identified the bacillus Mycobacterium leprae matic expression in a funeral rite that accompanied in 1873. There still is no clear understanding of the their ejection in some areas of medieval Europe, but it transmission of the causative agent, which appears to did not preclude continued efforts at palliative care. require long-term exposure and has a long incubation Similarly, in most societies, public stigmatization and period. Efforts to grow the organism in a cell culture, exclusion coexisted with the protectiveness of families. which is prerequisite to the development of a vaccine, Even official banishment failed to eliminate the victims remain unsuccessful. Divided into localized (tubercu- from communal life and consciousness. HD patients loid) and generalized (lepromatous) forms, the disease have been the objects of effusive charity and the manifests first in skin discoloration and then in subjects of stories of miraculous healing and of heroic nodules, lesions, and topical anesthesia. If unchecked, missionaries from the twelfth-century foundation of it gradually spreads over the entire body, attacks the numerous leprosaria to the current activities of global soft tissue of the nose and throat, impairs vision, and aid movements. Nevertheless, they must still contend damages the nervous system. Ultimately, extremities with discrimination and assaults on their self-esteem in become deformed and paralyzed, and may fall off addition to the physical disabilities they incurred before after repeated but unperceived injuries. receiving medical treatment. After ages of unproven The intrinsic seriousness and disfiguring effects of remedies, in which snake meat figured prominently, leprosy and, in the West, an accumulation of misnomers and high but vain expectations for chaulmoogra oil in 1036———Leupolt, Jane (1812–1894) the early twentieth century, the introduction of dapsone reading materials, she returned to India in 1860 and in 1941 brought the first effective therapy. The drug organized formal literacy teaching of blind children takes a toll on the kidneys, which may cause some with Mrs. Amalie Fuchs, a fellow missionary. By patients to forgo their medication and others to die 1864 their efforts convinced the government to fund when dialysis is not available. In addition, emerging teachers for blind children. Using adapted Moon drug-resistant strains of M. leprae have necessitated characters, Jane Leupolt succeeded in printing readers multidrug therapies. These carry more side effects, and in Hindi. Light industrial work was also begun at their expense impedes application in the areas of the Benares with blind youths at Raja Kali Shankar world with both the lowest prosperity and the highest Ghosal’s Asylum in this period, and Jane Leupolt’s incidence. Endemic leprosy declined markedly in early embossed books were used there from 1868 by Indian modern Europe, and currently no industrialized country teachers whom she trained in their use. Although has more than a hundred HD patients. In the develop- some earlier literacy work had begun in India with ing world, however, hundreds of thousands of new Lucas’s script, Jane Leupolt was the first to organize cases are diagnosed each year. the teaching of blind people on a larger scale and to gain government recognition. Before leaving India —Luke E. Demaitre in 1872, the Leupolts passed the materials to the See also Institutionalization and Segregation; Stigma. Reverend John Erhardt at Secundra Orphanage to add to the facilities of its famous printing house. Further Readings —Kumur B. Selim Hastings, R. C., ed. 1994. Leprosy, 2d ed. Edinburgh: Churchill Livingstone. See also William Moon. Roberts, Charlotte A., Mary E. Lewis, and Keith Manchester, eds. 2002. Past and Present of Leprosy: Archaeological, Further Readings Historical, Paleopathological and Clinical Approaches (Proceedings of the Third International Congress on the Archives of SPFEE, University of Birmingham. Ref. FES AM1 Evolution and Paleoepidemiology of the Infectious Diseases, (Minutes 56, 67, 96, 104, 120, 126, 127, 151, 305, 562, 609, University of Bradford, July 26–31, 1999). Oxford: ICEPID. 632). Srinivasan, H. 1995. “Deformities and Disabilities: The Unfin- Fuchs, Mrs. 1864. “A Letter from Banares.” Female Missionary ished Agenda in Leprosy Work.” Leprosy Review 66(3): Intelligencer (new series) 7:24–26. 193–200. Leupolt, C. B. 1884. Further Recollections of an Indian Mission- ary, pp. 243–247. London: Nisbet. Websites International Leprosy Association, http://www.leprosy-ila.org ᨘ International Leprosy Association, Global Project on the History LEWIN, KURT (1890–1947) of Leprosy, http://www.leprosyhistory.org German-American psychologist

Kurt Lewin was a German-American psychologist ᨘ LEUPOLT, JANE (1812–1894) who profoundly influenced many fields. Lewin’s envi- British missionary and educator ronmental/contextual approaches to studying behavior and his integration of science and social change serve Jane Leupolt, née Jane Chambers Jones, went to India as cornerstones for contemporary conceptions of dis- in 1835 with the Society for the Promotion of Female ability, disability research, and policy. Born in Prussia, Education in the East as a trained infants teacher. Lewin studied and taught at the University of Berlin. She married the Reverend Charles Leupolt in 1839 In 1933, he emigrated to the United States to work at and for many years concerned herself with the education Cornell University, moving to the University of Iowa of blind children in the Orphan Institution at Sigra, in 1935 and then to the Massachusetts Institute of Benares (Varanasi), and with local blind adults. After Technology with the 1944 launching of the Center for living in England, where she saw Moon’s embossed Group Dynamics. Liliane Foundation———1037

Lewin conceptualized behavior (B) as a function who also became his lover. She bore Lichtenberg six of the person (P) and the environment (E), expressed children, and late in his life he married her. mathematically as B = f(P, E). Person-environment Lichtenberg, although fond of the monarchy, was interaction is key to the social definition of disability. not only an outstanding physicist but also a represen- Lewin melded research and social intervention. His tative of Enlightenment philosophy. He became the oft-quoted statement “There is nothing so practical as father of the German aphorism. Many of his witty a good theory” characterizes his view that science and ideas, familiar quotations, and flashes of thought— social change should be achieved simultaneously. or “penny truths,” as he liked to call them—were Lewin called this combination “action research,” and connected with his life. These can be found in his this approach is often used today in disability studies. so-called Sudelbücher (mess books), which remained Much of Lewin’s work dealt with reducing preju- unpublished during his lifetime and became available dice. Lewin demonstrated that nondiscriminatory widely only at the beginning of the twentieth century. policy led to decreased prejudice in mixed-race hous- In some of his most famous aphorisms he addressed ing projects. Blacks and whites living as equals came the philosophy of disability and physical impairment. to view each other as friends, a concept on which the Lichtenberg’s fear of people was paired with the gift inclusion efforts of disability advocates are based. for observation concerning human behavior. This also generated his polemic “Über Physiognomik; —Willi Horner-Johnson wider die Physiognomen” (“On Physiognomics; against See also Translating Theory and Research into Practice. Physiognomy”), which was published in 1778. In 1983, an exhumation of Lichtenberg’s skeleton Further Readings proved that in fact no smallness in stature or “mis- Marrow, A. J. 1969. The Practical Theorist: The Life and Work of shapenness” could be ascertained. His impairment, Kurt Lewin. New York: Basic Books. although descriptions of it have been handed down by his contemporaries, seems to have vanished into the air. One could take this finding as an ironic commen- ᨘ LICHTENBERG, GEORG tary on the controversies among Lichtenberg’s bio- graphers. Even today, discussions arise as to whether CHRISTOPH (1742–1799) the philosopher endured his suffering with patience German physicist and philosopher or with humor, or whether he simply went about his daily life, feeling indifferent about his disability. Georg Christoph Lichtenberg was born on July 1, 1742, in Ober-Ramstadt in Darmstadt, Germany, and —Christian Mürner died on February 24, 1799, in Göttingen. His father, who was a minister, wrote in the church register after Further Readings Lichtenberg’s birth: “birth’d son who despite weakness Achenbach, Bernd and Ulrich Joost. 1991. Lichtenbergs äußere I baptized.” From the age of eight, Lichtenberg suffered Erscheinung. (Lichtenberg’s Outer Appearance). Göttingen: from a spinal deformation combined with a hunchback Wallstein Verlag. that was probably caused by rachitis. With the help of a Lichtenberg, Georg Christoph. 1968. Schriften und Briefe (Essays governmental scholarship, he was able to attend uni- and Letters), 6 vols. Edited by Wolfgang Promies. Munich: Carl Hanser Verlag. versity. In 1769, Lichtenberg was appointed professor Promies, Wolfgang. 1964. Lichtenberg. Reinbek bei Hamburg: of physics in Göttingen. It is said that Lichtenberg Rowohlt Taschenbuch Verlag. could write his lectures on the board without turning his back—that is, his hump—to the audience. For a time, Lichtenberg lived with a flower girl, Maria ᨘ LILIANE FOUNDATION Dorothea Stechardt. She was his housekeeper and lover, but she died at an early age. Soon thereafter he took in a The Liliane Foundation, located in the Netherlands, is new young housekeeper, Margarete Elisabeth Kellner, committed to doing justice to children with disabilities 1038———Literature, Folly in developing countries by giving them access to the particulars of the local situation. They are aware of rehabilitation. In 1980, the Liliane Foundation started what kinds of assistance the children need most to cope by assisting 14 children. In 2002, the foundation better in their specific surroundings and circumstances. helped 31,982 children spread over 80 countries. As The Liliane Foundation uses as many local facili- of that year, the total number of applications allocated ties for rehabilitation as possible. Children who need and justified since the organization started its activi- surgery undergo it in the hospitals nearest to where ties amounted to exactly 249,792. they live and receive aftercare in the vicinity as well. Characteristic of the Liliane Foundation’s assis- Physiotherapy is provided in the children’s homes tance are direct contact with the child within the home or in nearby facilities, and any needed appliances situation and attention to the personal growth and are obtained locally. Children also receive education happiness of the child. The key feature is “tailor-made” and vocational training in locations as close to their assistance—that is, assistance that varies according to families’ homes as possible. the personality and the situation of each individual —Patrick Devlieger child. The guideline in the rehabilitation process is the child’s individual rehabilitation plan, which sets Websites out specific goals and describes the desired results. The final objective of the rehabilitation is the child’s Liliane Foundation, http://www.lilianefonds.nl integration and participation in society. The Liliane Foundation directs its efforts primarily toward children with disabilities living at home. From ᨘ LITERATURE, FOLLY the start, the parents are closely involved in the reha- bilitation process; this involvement (also in a material Folly literature is mainly a phenomenon of sixteenth- sense) is extremely important for the success of the century Europe. Although the term Narr (fool) was used rehabilitation. by earlier authors, it achieved its broad circulation only The small-scale, direct, and person-centered assis- when Sebastian Brant (1457–1521) published the moral tance that is typical of the Liliane Foundation is made fiction Narrenschiff (Ship of Fools) in 1494. Shortly possible in practice through the foundation’s collabo- after the appearance of its first German edition, this ration with a worldwide network of “mediators” (local book was translated into Latin, English, French, and contact persons). Only representatives of nongovern- Dutch. The passengers on the “Ship of Fools”—includ- mental or religious organizations can become media- ing the narrator himself—were fools because they were tors. The Liliane Foundation pursues its policy of not able to conform to moral, religious, and ethical strengthening the mediator network structurally by norms. The author not only criticized human sins and entering into partnership agreements with these orga- vices, such as drunkenness, adultery, and lavishness, but nizations. The partnership agreements place the also condemned minor deviations such as the dislike of responsibility for the functioning and financial control planning one’s future. Brant’s book became a best-seller of the mediators, as well as for the continuity of the and was a hallmark in Renaissance literature. It influ- work done, with the organizations. enced many other pieces such as Erasmus von Many mediators are social workers, physiotherapists, Rotterdam’s Encomium moriae (Praise of Folly). or nurses who work in the slums of big cities or in rural Besides their evident importance to moral fiction, areas, where people often hardly know that rehabilita- fools played important roles in carnival plays and jest tion is possible. Mediators or their coworkers arrange books. However, natural fools, being the main objects for the rehabilitation of the children with disabilities of interest from the disability studies perspective, they come across in their work, requesting that the were hardly ever mentioned in the Ship of Fools and Liliane Foundation provide partial funding of the reha- similar fiction. In his sermons about the Ship of Fools bilitation interventions needed. Because mediators and in 1498 and 1499, the famous Strasburg preacher their coworkers have direct contact with these children Geiler von Kaysersberg (1445–1510) explained that and their families, they know the children’s needs and natural fools were fools without sins. They did not Literature, Folly———1039 deliberately behave in deviant ways and therefore divine intervention, and consequently interpreted were not suitable to illustrate violations of moral, reli- their behavior as foretelling signs. It was Martin Luther gious, and ethical norms. Instead, during the Middle (1483–1546) who related the anecdote about natural Ages and Renaissance natural folly simply described fool Claus Narr, who asked for water that would help a condition of essential mental difference. Natural him to extinguish a fire while at the same time in the fools were understood as differing not only from the distance a castle was burning. Other authors inter- normal but also from the mentally ill, since their con- preted not only single episodes of a fool’s life but the dition was not a temporary, but a permanent one. whole foolish behavior as a sign of prophecy or wise Although natural fools can be found in Renaissance telling. These authors used natural folly as a didactic literature even before the Ship of Fools was published, example for moral, religious, and ethic norms. printed pieces about natural fools made up only a The German collection of 627 anecdotes of Claus small segment of literature. For instance, in Wolfram Narr by Wolfgang Büttner is a prominent piece of this von Eschenbach’s thirteenth-century epic poem type of didacticism. The book was printed under the “Parzival,” the protagonist’s mother dressed his son as title Sechs hundert/sieben und zwantzig Historien/Von a fool to prevent him from becoming a knight. In Claus Narren. Feine schimpffliche wort und Reden/die doing so, the mother hoped that Parzival would return Erbare Ehrenleut Clausen abgemerckt/und nachge- home quickly as soon as he was badly treated at court. sagt haben/Zur Bürgerlichen und Christlichen Lere However, as natural folly depended not only on a spe- [...] (Six hundred and twenty-seven anecdotes of cial costume, Parzival’s princely origin could not be Claus Narr. Fine and funny words and talks which disregarded. In contrast, in Gottfried von Straßburg’s honorable men noticed and retold. For civilian and epic thirteenth-century poem “Tristan,” the hero vol- Christian lessons [...]).One anecdote in this book untarily dressed as a natural fool when he met Queen went like this: When Claus Narr saw a painted bird, he Isolde. In this disguise, it was even possible for him tried in vain to chase it away. Büttner interpreted this to sleep at the door of his secret love. However, as episode in a moral sense as a lesson that guests should natural folly was linked with asexuality, he could stick not stay too long. Not only in everyday life, but also to his folly role only as long as he was not seen in bed in the theological debates of sixteenth-century with Isolde. Having betrayed his secret, Tristan had Europe, Claus Narr was presented as a model for true to escape. This plot serves as an example of high faith in God. For example, at one occasion he was medieval German literature in which natural folly asked about Martin Luther’s future. Claus Narr often offered a chance and disguise and dissembling. answered that he was sure that the Reformation would In sixteenth-century Europe, jest books were prevail but added that his shoes and clothes became another genre that collected anecdotes about all kind worse and worse. In his moralizing conclusion, of fools. A good example of a jest book is Schimpf Büttner called the fool a wise man as he foretold the und Ernst (Jests and Lessons) by Johannes Pauli continuation of the Reformation. (c. 1450–c. 1520). Three main approaches to natural Until the end of the eighteenth century, Wolfgang fools can be differentiated in folly literature. First, Büttner’s book was often reprinted. Other collections actions of natural fools were said to evoke laughter. of jests and folly anecdotes quoted this source and Second, natural fools were shown as divine beings continued to use the fool as a didactic example. bearing messages from God. Third, natural fools were Besides Claus Narr, who was a main source of refer- used as positive didactic examples. They were laughed ence in the sixteenth- and seventeenth-century folly at for their deviant behavior. For example, a popular literature, other natural fools became subjects of anecdote told of a natural fool discovering a foal stand- literature. In 1619, the Protestant preacher Philipp ing next to the fool’s stud. The fool started to beat his Cradelius printed a sermon for a natural fool’s funeral. horse for being a whore, and comforted the foal. The life of the fool Hans Miesko was interpreted by These anecdotes often had a closing statement him less as a sign of God but more as an object of pity. that aimed at making the general audience laugh. The In that respect, Cradelius’s sermon showed a slightly authors also understood the natural fools’ deviance as different approach to natural folly. 1040———Lobbying

The various perceptions of natural folly remained in a discussion of lobbying restrictions imposed by U.S. existence until the end of the eighteenth century. Until federal legislation as well as IRS regulations, and an the Enlightenment, natural folly remained an object of illustration of lobbying taken from the 1998 reautho- laughter, of admiration, and of pity. At the beginning of rization of a major disability law. the nineteenth century, however, the view of natural fools changed completely. They came to be classified as mentally ill. Consequently, books about natural fools DEFINITION OF LOBBYING such as Claus Narr were no longer read or understood. The term lobbying refers to engaging in activities It is significant that in contrast to other examples of directed toward public officials for the purpose of folly literature such as the Ship of Fools or the Dyl influencing legislation and/or policy. Three factors are Ulenspiegel, Büttner’s Claus Narr was not reprinted involved in a lobbying activity: again. In the nineteenth century, the mental difference of natural fools became an object of medical and peda- • The government activity being targeted: gogical institutions. “Legislation and/or policy” in the above definition Literature about natural fools draws our attention to refers to an array of federal, state, and local govern- the fact that the concept of mental difference varies in mental activities, such as preparation and passage history. It is therefore a fruitful source for disability of laws; adoption and implementation of rules, reg- studies as it serves to show the diverse constructions and ulations, and policies; awarding and administration functions once applied to mentally impaired people. of grants and contracts; and confirmation of indi- viduals nominated for official positions (Lobbying —Ruth von Bernuth Disclosure Act, sec. 1602, defs. [8]). • The public officials being lobbied: The title of See also Fools. “public official” covers a range of government- Further Readings affiliated positions in the executive and legislative branches, including legislators and staff, and Flögel, Karl Friedrich. 1789. Geschichte der Hofnarren. Liegnitz, department and agency administrators and Leipzig, Germany: Siegert. employees (U.S. Department of Education n.d.). Könneker, Barbara. 1966. Wesen und Wandlung der Narrenidee • The method being used to lobby: Lobbying activi- im Zeitalter des Humanismus. Brant–Murner–Erasmus. ties include not only in-person exchanges but also Wiesbaden, Germany: Steiner. Midelfort, H. C. Erik. 1999. A History of Madness in Sixteenth- written communication and background work, Century Germany. Stanford, CA: Stanford University Press. such as the planning of lobbying strategies, analy- Schmitz, Heinz-Günter. 1990. Wolfgang Büttners Volksbuch von sis of bills, and preparation of position papers Claus Narr. Mit einem Beitrag zur Sprache der Eisleber (U.S. Senate n.d., sec. 3). Erstausgabe von 1572. Hildesheim, Zürich, New York: Georg Olms Verlag. In essence, all attempts to influence government Velten, Hans Rudolf. 2001. “Komische Körper. Hofnarren und die action, to persuade public officials of the rightness of Dramaturgie des Lachens im späten Mittelalter.” Pp. 292–317 one’s position, are defined as lobbying. in Zeitschrift für Germanistik N. F. XI (N. F. = Neue Folge). Welsford, Enid. 1935. The Fool: His Social and Literary History. London: Faber. LOBBYING REGULATIONS AND RESTRICTIONS ᨘ LOBBYING Lobbying has had a prominent presence in American government since the nation’s earliest days. (In the Lobbying is relatively easy to define but less easy to late 1700s, veterans of the Revolutionary War peti- explain, carrying as it does many negative connotations tioned Congress for reimbursement of personal funds as well as a fairly high capacity for being misunder- expended on the war effort. See Byrd 1989.) As citi- stood. This entry provides a definition of lobbying, zens of a representative government, Americans have Lobbying———1041 the right to let their legislators know how they feel organization at risk with the IRS because they don’t about laws, bills, policies, and nominees for positions understand the restrictions on lobbying that pertain to in government. their non-profit. So what is the answer? Can we or That said, lobbying carries what one historian has can’t we lobby? The answer lies somewhere in the called a “somewhat sinister and pejorative conno- middle. (Community Health Assistance Resource tation” (Maskell 2001, sec. 2). Of course, this conno- Team n.d.) tation has to do with improper behavior between As the above quotation shows, lobbying by nonprofit lobbyists and public officials. Regrettably, lobbying organizations is an area in which there is much con- holds a great potential to result in preferential treat- fusion and misinformation, especially for small non- ment. Impropriety in lobbying has been described in profits without the funds to hire professional lobbyists. the most severe of terms, including unsavory, corrupt For example, the staff at the Independent Living and contaminated, and reprehensible.1 Certainly, Research Utilization Program in Houston, Texas, have records provide ample documentation of lobbying been providing technical assistance in the field of abuses, describing the frequently tawdry, occasionally independent living for nearly 30 years, and one ques- startling, and too-often-successful attempts of lobby- tion they have been asked innumerable times is, “Can ists to win favor with legislators and other public a center for independent living do lobbying?” One can officials (Byrd 1989). easily replace “center for independent living” in this question with descriptions of other kinds of organiza- The Lobbying Disclosure Act tions, such as a counselor association, parent group, The U.S. Congress’s answer to lobbying corruption university, physical therapist organization, or hospital. has consistently been regulation, with the first attempt The answer is always the same: “Yes, of course, instituted in 1876 (Byrd 1989). The most recent over- but....”And this is followed by the advice, “Be sure haul of lobbying regulations occurred in 1995 with to run your plan of action by an attorney who special- passage of the Lobbying Disclosure Act. This law izes in lobbying.” requires lobbyists to register, disclosing such informa- A careful reading of the IRS rules pertaining to lob- tion as the organization(s) they represent and the issues bying activities by nonprofits may reduce the confu- they are addressing. In addition, twice a year lobbyists sion and misinformation to some degree. The rules must file reports updating this information and adding make it clear that lobbying is entirely appropriate, estimates of how much money they will spend. An given certain caveats such as the following: organization that engages in lobbying—whether using members of its staff or board of directors as its • Federal funds may not be used for lobbying lobbyists or employing lobbying consultants—may (Office of Management and Budget n.d.). • be exempted from registration if it meets minimum A 501(c)(3) organization may not be involved in thresholds related to money expended, time invested, political campaigns (such an organization is and number of lobbying contacts made with public “absolutely prohibited” from either direct or indi- rect participation) (Internal Revenue Service officials. Lobbying, it should be noted, requires seri- 2004). ous record keeping, whether registration is necessary • The lobbying activities of a nonprofit must not or not. constitute a “substantial” portion of its total activ- ities (Internal Revenue Service 2004). IRS Restrictions on Nonprofits This topic [lobbying by nonprofit organizations] The penalties for violating these restrictions are often results in two extreme actions—some people severe: An organization may lose its tax-exempt warn that if your organization does any lobbying you status, its income may be subject to tax, and penalties risk losing your tax-exempt status with the IRS. Other may be imposed against the organization’s officers people don’t exercise enough caution and do put their having complicity (Internal Revenue Service 2004). 1042———Lobbying

Are there conditions under which the IRS considers Government activity addressed. Disability rights it acceptable for a nonprofit to advocate strongly for its advocates wanted very badly to influence the writing beliefs? Yes, as specified in this IRS (2004) statement: of the law so that Section 508 would be enforceable. And just as ardently, they wanted to influence the pro- Organizations may, however, involve themselves in cedure by which the compliance standards would be issues of public policy without the activity being con- prepared so that the access needs of people with visual sidered as lobbying. For example, organizations may impairments, mobility impairments, and cognitive conduct educational meetings, prepare and distribute impairments would be met. And, because members educational materials, or otherwise consider public of the entity given responsibility for preparing the policy issues in an educational manner without jeop- ardizing their tax-exempt status. standards (the U.S. Architectural and Transportation Barriers Compliance Board) were presidential appointees, they wanted to influence who was nomi- A POSITIVE LOOK AT LOBBYING nated for membership so that people who truly under- stood accessibility barriers would be selected. Much of this entry has covered the negative aspects of lobbying—as action that is morally corrupt or as action Outcome. Under the principle of “win some, lose that jeopardizes the existence of an organization. There some,” Section 508 was strengthened through the is another side to lobbying, however; lobbying is often inclusion of enforcement provisions and establish- a laudable activity undertaken by people committed to ment of sound access standards; however, its enforce- improving our way of life. The following illustration, ment coverage was extended only as far as the federal taken from the arena of disability rights during the government and not to state governments as disability 1998 reauthorization of the Rehabilitation Act,2 is pro- advocates had wanted. vided to show how lobbying has been used to improve law, to expand opportunities for consumers with dis- At the same time lobbying activity was being under- abilities to live more independently, and to protect the taken to address Section 508, other organizations civil rights of these consumers. of people affected by and/or working in the disability and rehabilitation fields were taking action to address Background. In 1986, Section 508 was added to the other sections and titles of the Rehabilitation Act. For Rehabilitation Act. It requires governmental depart- instance, it is likely that associations of rehabilitation ments and agencies to use accessible equipment when counselors wanted to increase training programs under creating, duplicating, and sending information. This Title III, that advocates of supported employment includes computers, copiers, faxes, telephones, and wanted to strengthen and ensure continuation of that just about everything used in a modern office. The program under Title VI, and that researchers wanted to problem, as seen by disability rights advocates, was increase funding under Title II. (The National Council that Section 508 had no enforcement provisions, making on Independent Living, for example, had its excellent it nonbinding, and compliance was not overwhelming reauthorization position paper written and circulated (Association of Tech Acts Projects n.d.). among legislators more than a year in advance.) This is the American system of lobbying at its best. Desired changes. Members of a number of organiza- tions active in the disability rights movement wanted to take advantage of the Rehabilitation Act’s 1998 IN CLOSING: LOBBYING reauthorization to have Section 508 strengthened in AND ONE’S DUTY three respects: by requiring development of standards of accessibility that all equipment must meet, by per- When considering lobbying, Americans need to mitting individuals to file complaints and lawsuits remember that lobbyists are exercising rights that are against noncompliant departments and agencies, and guaranteed to all persons living in the United States, by applying these two conditions to state governments. particularly those rights assured under the First Lohse-Wächtler, Elfriede (1899–1940)———1043

Amendment regarding speech and petition (Maskell “Lobbying.” 2001–2004. Columbia Encyclopedia, 6th ed. 2001). Nearly a hundred years ago, the 11th edition of Retrieved July 10, 2004 (http://www.encyclopedia.com/ the Encyclopedia Britannica included a discussion of searchpool.asp?target=lobbying&Search.x=0&Search.y=0). Lobbying Disclosure Act (as amended). Retrieved July 11, 2004 citizens’ involvement in lobbying, observing that (http://uscode.house.gov/DOWNLOAD/02C26.DOC). “people who are most intimately concerned naturally Maskell, J. 2001, September 14. “Lobbying Congress: An Overview have a right to appear before the legislature or its rep- of Legal Provisions and Congressional Ethics Rules” (Congres- resentatives, the committee in charge of the bill, and sional Research Service Report). Retrieved April 12, 2005 present their side of the case.” Indeed, who better to (http://carmengroup.com/links/CRS_Report/ crs_report.html). advise Congress on legislation, policies, and programs Michaels, B. 1998. “Frequently Asked Questions about Lobbying and CILs.” Independent Living Research Utilization Program, that increase opportunities for people with disabilities Institute for Rehabilitation and Research, Houston, TX. than those who have spent a lifetime in support of dis- Office of Management and Budget. n.d. Circular no. A-122. ability rights? It is the right, privilege, and, some would Retrieved July 11, 2004 (http://www.whitehouse.gov/omb/ say, the duty of citizens to take part in the development circulars/a122/a122.html). of public policy. U.S. Department of Education. n.d. “Form ED 80–0013: Certifica- tion Regarding Lobbying.” Retrieved July 1, 2004 (http:// —Laurel Richards and www.ed.gov/fund/grant/apply/appforms/ed80013fill.pdf). Lex Frieden U.S. Senate. n.d. “Lobbying Disclosure Act Guidance.” Retrieved July 10, 2004 (http://www.senate.gov/legislative/common/ See also Advocacy. briefing/lobby_disc_briefing.htm).

Notes The authors are indebted to Bob Michaels (1998) for his study ᨘ LOHSE-WÄCHTLER, ELFRIEDE of lobbying regulations and their application to centers for (1899–1940) independent living. German painter 1. Sources for these descriptions are, respectively, the Columbia Encyclopedia (6th edition), Maskell (2001), and the Struggles, crises, and catastrophes characterize the 1911 edition of the Encyclopedia Britannica. biography of painter Elfriede Lohse-Wächtler, whose 2. When the Rehabilitation Act was amended in 1998, it was work the Nazis condemned as degenerate in 1937 and incorporated into the Workforce Investment Act as Title IV. Until was first rediscovered at the end of the 1990s. Born that time, it had been a stand-alone law. on December 4, 1899, in Dresden, Elfriede Wächtler Further Readings grew up in a lower-middle-class family. During her studies at the renowned Dresdner Königliche Association of Tech Act Projects. n.d. “Section 508 Information Kunstgewerbeschule (Dresden Royal Art Academy) Technology Access: Questions, Answers, and Unknowns for State and Local Entities.” Retrieved July 19, 2004 (http:// in the department of fashion and applied graphic arts, www.ataporg.org/questions%20and%20answers.htm). she moved into a studio in 1915 that became one of Byrd, R. 1989. “The History of Lobbying.” Retrieved July 10, the main meeting spots for modern artists in Dresden. 2004 (http:// www.senate.gov/legislative/common/briefing/ There she began to paint and draw using a variety of Byrd_History_Lobbying.htm). techniques—the beginning of work that spanned Community Health Assistance Resource Team. n.d. “Basic expressionism, verism, and New Functionalism. She Operating Guidelines for New/Small 501(c)(3) Non-profit could not survive off the income from her artwork Organizations.” Retrieved July 10, 2004 (http://www.health alone, as it earned her only little money. In 1921, she .state.mo.us/CHART/BOG_lobbying_and_nonprofit.html). married the painter and singer Kurt Lohse, and in Internal Revenue Service. 2004. “Political and Lobbying 1925 she moved to Hamburg to be with him. The mar- Activities.” Retrieved July 10, 2004 (http://www.irs.gov/ riage was marked by frequent moves, economic diffi- charities/charitable/article/0,,id=120703,00.html). “Lobbying.” 1911. Encyclopedia Britannica, 11th ed. Retrieved culties, and Lohse’s infidelity. The definitive break July 10, 2004 (http://25.1911encyclopedia.org/L/LO/ came in 1929, with the divorce occurring at Lohse’s LOBBYING.htm). instigation in 1935 “due to incurable mental illness.” 1044———Lü K'un (1536–1618)

ᨘ The years 1925–1931 were Lohse-Wächtler’s most LÜ K'UN (1536–1618) intense creative period and included a few public exhi- Chinese scholar and administrator bitions. At the same time, her health grew increasingly worse. In 1929, she was admitted to the psychiatric Lü K'un was a forward-thinking senior administrator state institution in Hamburg-Friedrichsberg for two in Northern China who worked to establish institutions months because of paranoia. After her release, she that would relieve poverty and encourage self-help showed her portraits of fellow inmates in a successful among aged or disabled people: “For those among the exhibition titled Friedrichsberger Köpfe (Heads of last who were not too young nor too old he prescribed Friedrichsberg). Isolated and impoverished to the point training in skills like basketry or the braiding of mats” of homelessness, she created primarily (self-)portraits, (Goodrich and Fang 1976). Lü also invested time and nude studies, and milieu studies in 1930 and 1931. effort in didactic writing and publication to guide the Without means and exhausted, she returned to her masses toward better health and improved agriculture. parents’ house in 1931, and her father subsequently He encouraged careful record keeping by physicians had her admitted to the regional psychiatric institution and government officials, so as to improve their prac- in Arnsdorf. There she was diagnosed with schizo- tice. His particular concern for blind people arose from phrenia, a diagnosis that is disputed today. Although his mother’s many years of blindness. “Lü ordered the her confinement left her in a state of despair, Lohse- officials of each city to train the blind in a profession Wächtler continued her artistic work until she was such as music, singing, storytelling, and fortune forcefully sterilized on December 20, 1935, despite her telling” (Goodrich and Fang 1976). He had no per- own and her family’s enraged resistance. On July 31, sonal faith in fortune-telling, yet he “compiled a 1940, Elfriede Lohse-Wächtler was “transferred” out simple textbook from which the younger people of Arnsdorf to the NS-“Euthanasia” Institution in among the blind might be orally taught” (Goodrich and Pirna-Sonnenstein, where she was murdered. Fang 1976). These were innovative attitudes and prac- —Petra Lutz tices in his time, with some parallels to contemporane- ous social thinking in Western Europe. Further Readings —Kumur B. Selim Böhm, Boris. (2003). Ich allein weiß, wer ich bin. Elfriede Lohse- Wächtler 1899–1940. Ein biografisches Porträt. (I Alone Further Readings Know, Who I Am: Elfriede Lohse-Wächtler 1899–1940; A Goodrich, L. C., and Chaoying Fang, eds. 1976. Dictionary of Biographical Portrait). Herausgegeben vom Kuratorium Ming Biography 1368–1644, Vol. 1, p. 1007. New York: Gedenkstätte Sonnenstein e.V. Pirna: Selbstverlag. Columbia University Press. Peters, Anne and Adolf Smitmans. 1996. Paula Lauenstein, Handlin, J. F. 1983. Action in Late Ming Thought: The Elfriede Lohse-Wächtler, Alice Sommer. Drei Dresdner Reorientation of Lü K'un and Other Scholar-Officials, Künstlerinnen in den zwanziger Jahren. (Paula Lauenstein, pp. 149, 161–163, 181–182. Berkeley: University of Elfriede Lohse-Wächtler, Alice Sommer: Three Dresden California Press. Artists from the 1920s). Albstadt: Verlag Städtische Galerie. Reinhardt, Georg, ed. 1996. Im Malstrom des Lebens versunken (Lost in the Painting Stream of Life). Cologne: Wienand. ᨘ Stiftung Sächsische Gedenkstätten zur Erinnerung an die Opfer LUTHER, MARTIN (1483–1546) politischer Gewaltherrschaft, ed. 2000. “. . . das oft aufsteigende German church reformer and scholar Gefühl des Verlassenseins.” Arbeiten der Malerin Elfriede Lohse- Wächtler in den Psychiatrien von Hamburg-Friedrichsberg Martin Luther, the German church reformer, polemi- (1929) und Arnsdorf (1932–1940) (“. . . the often rising feeling cist, scholar, and pastor, is linked in some disability of abandonment.” Works of the Painter Elfriede Lohse- literature with an oral suggestion about killing a Wächtler in the Institutions of Hamburg-Friedrichsberg [1929] severely disabled boy who was considered not human and Arnsdorf [1932–1940]). Dresden: Verlag der Kunst but a changeling—that is, a devil exchanged for a Dresden. child (LW 54:397). The report comes from a source Luxemburg, Rosa (1871–1919)———1045 notorious for editing and altering some of Luther’s with Leo Jogiches, who became her lifelong companion. conversations (LW 54:ix–xxiii), yet Luther’s writings She obtained German citizenship through a sham do underline his belief in satanic powers of deception marriage with another man. (LW 3:244; 24:74–75; 26:190). The “changeling” idea From 1898 on, Luxemburg lived in Berlin, where may derive from academic constructions, mistakenly she quickly became one of the most important politi- attributed to folklore. Luther’s much-loved personal cians of the Social Democratic Party of Germany assistant through most of his working life was a man (SPD) and the left-wing party’s leading representa- with mild disabilities, Wolf Sieberger. Luther strongly tive. In spite of her disability, she undertook exhaus- advocated the inclusion of deaf or disabled people in tive election campaigning, gave rousing speeches, church life. He believed that their spiritual qualities lectured at the party school, and positioned herself are in no way impeded by their physical condition as an outstanding journalist, uncompromising— (LW 30; 54:460; 35:110–111; 45). An overview of although her work was eventually futile—in her evidence suggests that Luther’s attitudes and practices stances against war and for international solidarity. toward disabled persons were largely positive, During this time she was the subject of numerous per- although some of his views may seem strange in the sonal attacks. Her opponents—as well as members of twenty-first century. her own party—attacked her heritage and her appear- —Kumur B. Selim ance, reviling her as a “small, ugly Jew.” Luxemburg spent the majority of the World War I period in prison, with her feelings fluctuating between resignation and Further Readings hope. Deeply disappointed with the SPD, in 1918 she Gewalt, D. 1970. “Taub und stumme in der sicht Martin Luthers.” became one of the founders of the German Communist Luther: Zeitschrift der Luther-gesellschaft 2:93–100. Party (KPD). Right-wing Freikorps officers murdered Goodey, C. F. and T. Stainton. 2001. “Intellectual Disability and Luxemburg (together with her fellow KPD member the Myth of the Changeling Myth.” Journal of the History of Behavioural Sciences 37(3): 223–240. Karl Liebknecht) on January 15, 1919, in Berlin dur- Miles, M. 2001. “Martin Luther and Childhood Disability in 16th ing the height of revolutionary unrest. Her corpse was Century Germany: What Did He Write? What Did He Say?” first discovered months later in a Berlin canal and was Journal of Religion, Disability & Health 5(4):5–36. buried in June 1919 at the behest of a highly sympa- Pelikan, J. and H. T. Lehmann, eds. 1955–1986. Luther’s Works. thetic populace. Perhaps the most-often quoted state- St. Louis: Concordia/Philadelphia: Fortress. ment from Luxemburg’s work is this: “Freedom is always and exclusively freedom for the one who ᨘ thinks differently.” LUXEMBURG, ROSA (1871–1919) German revolutionary and journalist —Hedwig Kaster-Bieker

The German socialist, revolutionary, and journalist Further Readings Rosa Luxemburg was born on March 5, 1871, in the Ettinger, Elzbieta. 1986. Rosa Luxemburg: A Life. Boston: Beacon. province of Zamosc in Russian-occupied Poland. She Kaster-Bieker, Hedwig. 2001. “Kompromisslose Sozialistin mit came from a Jewish family. After acquiring an illness Gehbehinderung—Rosa Luxemburg (1871–1919)” (“Uncom- at age five, she walked with a limp. In addition, she was promising Socialist with a Mobility Impairment: Rosa noticeably small. Even as a young student, Luxemburg Luxemburg [1871–1919]”). Pp. 71–79 in Berühmt–beliebt– behindert. Außerordentliche Frauen im Porträt (Celebrated– was active in politics. After fleeing Poland, she studied Loved–Disabled: Portraits of Extraordinary Women), edited economics in Zurich and received a doctorate in polit- by Hedwig Kaster-Bieker and Annelise Mayer. Kassel, ical science. In Zurich she also became acquainted Germany: Bifos. M

ᨘ MACE, RONALD L. (1942–1998) with Disabilities Act, which require basic accessibil- American architect ity in the built environment for future generations. In 1992, he was honored with the Distinguished Ronald L. Mace was a design visionary whose life as a Service Award of the President of the United States disabled person influenced the focus of his life’s work for promoting the dignity, equality, independence, and shaped the genius of his architecture and product and employment of disabled people. designs. He was a driving force behind the creation of In his training of architects and designers around the first accessible state building code in the United the United States, Mace emphasized that accessible States (in North Carolina) in 1973 and in the drafting of designs make life easier for everyone—curb cuts national accessibility codes and standards. He later being his favorite example. As his vision expanded, coined the term universal design to capture and pro- the North Carolina State University Center for mote his expanded philosophy of “design for all ages Accessible Housing, founded in 1989, became the and abilities,” which applies to all aspects of design— Center for Universal Design to reflect its expanded architecture, landscape, graphic, and product design. work in promoting the integration of the principles of Mace contracted polio at the age of nine and sub- universal design into all aspects of the design profes- sequently used a wheelchair for mobility; he person- sion. Shortly before Mace’s death on June 28, 1998, ally experienced how inaccessible environments limit on the occasion of the first international conference on a person’s ability to participate in the world. After universal design, he was honored by designers from graduating from North Carolina State University all over the world who had embraced his vision of School of Design in 1966, he was the first to put a designing for all people. human face on access guidelines by using well- —Joy E. Weeber rendered, human-centered illustrations. Mace and his consulting firm, Barrier Free Environments, did pio- See also Accessibility; Accessibility Codes and Standards. neering work in accessible, or barrier-free, design Further Readings focused on improving accessibility in the built envi- ronment so that disabled people could participate in North Carolina State University, Center for Universal Design. the life of their communities. In 1988, Mace was named 1997. “What Is Universal Design?” Retrieved April 20, 2005 (http://www.design.ncsu.edu/cud/univ_design/princ_overview a Fellow of the American Institute of Architects for .htm). that groundbreaking work. He was also influential in Ostroff, E., M. Limont, and D. G. Hunter. 2002. Building a World drafting the 1988 Fair Housing Amendments Act and Fit for People: Designers with Disabilities at Work. Boston: the 1990 Architectural Guidelines of the Americans Adaptive Environments.

1047 1048———Mackenzie, Clutha (1895–1966)

ᨘ MACKENZIE, CLUTHA (1895–1966) years, the medicalized individual model of “mental ill- New Zealander blind activist ness” continues to dominate mental health policy and practice internationally. It still shapes public under- Clutha Nantes Mackenzie spent his youth in New standings of “mental health” and governs the lives and Zealand as a farmhand and sailor, though his father experience of many mental health service users. In was a senior politician and diplomat. Clutha lost his contrast, mental health service users/survivors and sight in 1915 during a World War I battle in Turkey. their organizations are increasingly expressing their He went to St. Dunstan’s in England for rehabilita- concerns about medicalized individual models of tion and practiced writing and magazine editing. His “mental illness” and framing their experience in dif- future wife, Doris, was a St. Dunstan’s volunteer. ferent terms. Yet traditional “mental illness” under- Clutha returned to Auckland, New Zealand, and standings of their experience seem, if anything, to be worked from 1923 to 1938 managing the Jubilee gaining ground. They have been exported to the major- Institute for the Blind, fund-raising and campaigning ity world. They have been reinforced by the introduc- for blind people to live independently. His autocratic tion of a new “recovery” model for mental health style caused some problems, but his work was suc- services developed in the United States. cessful and he was knighted in 1935. His international career included lecturing and fund-raising across THE MAINTENANCE the United States, then six years in India, where he OF MEDICAL DOMINANCE opened St. Dunstan’s Center at Dehra Dun in 1943. He held a special government post to study and report The number and range of psychiatric diagnostic on blind education and employment, and engaged in categories continues to mushroom. These increasingly battles to determine which form of Braille would be cast broad socially related issues in medicalized adopted in India and internationally. In 1947, he toured terms, for example, attention deficit/hyperactivity China, producing a substantial report on blind people disorder (ADHD) and posttraumatic stress disorder there. He advised other Asian countries, reported on (PTSD). The needs of a growing range of groups, blindness in Turkey in 1952, and a few years later was notably children and young people and older people, mobilizing services for blind people in East Africa. are being framed in psychiatric terms. While making Clutha retired to New Zealand in 1958. clear that it cannot “treat” them, psychiatry has also categorized a growing range of people and behaviors —Kumur B. Selim under the heading of “personality disorder.” Some of these are closely associated with violence and homi- See also Blind, History of the; Experience of Disability: India. cide. This has reinforced traditional associations Further Readings of mental health service users with dangerousness, which has resulted in pressure for increasing restric- Chauhan, R. S. 1994. Triumph of the Spirit India, pp. 61–75. Delhi: Konark. tions on their rights, most notably in North America Fraser of Lonsdale. 1961. My Story of St Dunstan’s, pp. 165, and the United Kingdom. 199–201, 276, 280–286, 297, 353–355. London: Harrap. A growing focus on and recent developments in Mackenzie, C. and W. S. Flowers. 1947. Blindness in China genetics, the neurosciences, and pharmacology seem (Report to the government of China). [Nanking]: British Red to have confirmed the ascendancy of the natural Cross. sciences in this field as the key source for understand- ing, interpretation, and “treatment” of “mental disor- ᨘ MADNESS AND der.” Doctors are still the most powerful professionals MENTAL DISTRESS operating in this area. Understanding mental disorder in terms of physical processes fits with the large-scale While Western understandings of disability have use of drugs as the main and routine response to been subjected to fundamental reassessment in recent people’s difficulties. Madness and Mental Distress———1049

One of the consequences of the development of Mental health service user activists have tended not organizations and movements of mental health service to challenge the dominant medicalized framework users/psychiatric system survivors since the 1980s has explicitly. They have themselves frequently continued been the emergence of new challenges to and new cri- to operate within a framework of terms such as men- tiques of conventional medicalized understandings of tal health, mental health problems, difficulties, and “mental health.” These have been qualitatively differ- issues. However, they have also shown a growing ent from previous critiques of the dominant paradigm, unease with the traditional medicalized model, partic- such as “antipsychiatry” and the “social construction- ularly as it has been linked with an increasing empha- ism” of sociologists, which have tended to come from sis on social control and the extension of restrictions dissident professionals, competing professions (e.g., on mental health service users’ rights and freedom. psychology), and related academic analysts. These new For a growing number of mental health service user challenges have been based primarily on service users’/ activists, the inherent problem with a medicalized survivors’ understandings of their own experience— approach to “mental health”—even the descriptor their experiential knowledge. is itself medicalized and value laden—is that it is It is important to emphasize, however, that so far, based on a pathologizing construct. The underlying no equivalent of the social model of disability has construct that dominates “mental health” policy, been developed among mental health service provision, practice, and service users is one of “psy- users/survivors that could provide a systematic and chopathology.” It is possible to be persuaded that this philosophical basis for their activities. While it is still is not the case, because terms such as mental illness, a focus for much debate and controversy, the social mental disorder, and psychopathology are less often model of disability has offered disabled people just and less explicitly used nowadays. But the origins and such a coherent basis for their philosophy, self- meanings of the terminology remain unchanged. The organization, and collective action, reflected in their legal base that operates tends to be the same. Law and focus on rights and independent living. The social policy rest on the premise that there is something model of disability, however, has not as yet adequately “wrong” with the person. He or she is “ill.” The indi- been extended to address and explain the related, but vidual’s experience, behavior, perceptions—the also distinct, issues facing mental health service users/ person him- or herself—is pathologized. This is how survivors. Thus, while “mental health” issues and the people also come to understand themselves as mental situation of mental health service users/survivors have health service users. sometimes been incorporated in the social model of disability by its proponents, so far this model has not DEVELOPING ALTERNATIVE been accepted widely by mental health service users/ APPROACHES survivors as providing a satisfactory conceptual frame- work for their experience. The lack of a clear and agreed-upon conceptual It is not clear why, as yet, mental health service framework has not stopped mental health service users/survivors and their organizations have not devel- users and their organizations from developing their oped a coherent alternative to the medicalized model own alternative culture, discourses, and schemes for of “mental illness.” While the latter may be the only support. These have generally been based on nonmed- model for understanding with which many mental icalized models, highlighting a holistic, complemen- health service users/survivors are familiar, there also tary approach to providing support for mental health seems to be an unwillingness on the part of many service users/survivors. Such schemes have placed an activists to develop an explicit alternative. One view is emphasis on peer and self-advocacy, self-defined needs, that this may be linked with fears that to do so would self-education, self-management, and self-support. be interpreted from outside as an attempt to deny their They have led to the development of self-run crisis difficulties or difference and lead to their being further houses and refuges, survivor-led supported housing marginalized as lacking in insight and rationality. schemes, environmentally friendly employment, training 1050———Madness and Mental Distress and skill exchange schemes, programs employing “treatment” regimes, including confinement, restriction mental health service users as mental health workers, of rights, and compulsory “treatment.” crisis cards and advance directives, mutual aid and Mental health service users/survivors have yet to self-help support groups, and peer counseling. However, develop their own clear and agreed-upon definitions the lack of a clear and agreed-upon philosophy under- of mad and distress, although the terms have come to pinning these developments has sometimes made it be widely used within their movement. Members of difficult for service users/survivors and their organiza- Mad Pride, a U.K. survivor network that organizes tions to avoid being co-opted and their goals and ideas events and direct action and also produces publica- subverted by dominant medicalized service systems tions, highlight their pride in being mad. This pride and their agendas, with which they have frequently may be in being different, in surviving madness, in worked in close association. surviving the mental health system, in having unusual Mental health service users/survivors and their sensitivities or capacities, in having capacities to an organizations have also developed their own alterna- unusual degree, or in having a different way of life or tive terminology, framed in terms of “madness” and approach to life—an approach that may be unconven- “mental distress” rather than “mental health” or “men- tional or anarchic, open to a wider range of experi- tal illness.” Survivors’ use of terms such as mad and ences, or experienced more intensely. distress seems to reflect a desire both to move beyond Madness can be viewed as an equivalent of “psy- the medicalized individual understanding of their sit- chosis,” although not all survivors would be happy uation and experience and, in the case of mad, also to with the concept’s being appropriated in this way. As reclaim language that continues to be used to margin- mental health service users/survivors discuss it, mad- alize and demean them. Mad is just one of a constel- ness may have many expressions. It may be a one-off lation of pejorative terms used to describe mental experience, episodic, or long-term. In all these cases, health service users and the behaviors associated with people may report positive aspects of their madness. them—a constellation that includes terms like loony, They may value their experience and perceptions, crazy, and nuts. Such terms are also still used widely discovering helpful aspects, for example, to hearing in popular discussion to mean weird, frightening, out- voices or learning how to live with them. They may landish, unpredictable, and irrational. feel that their positive qualities and abilities are linked with and inextricable from the fact that they experi- MADNESS AND DISTRESS ence madness. Such experience, however, may also be negative and costly, restricting what people can do, In different cultures and historically, madness has been linked with difficult and painful thoughts and feelings interpreted and understood in many different ways. It and associated with crises and problems. has been associated with magical powers, the super- Mental health service users talk about both “men- natural, divine intervention, possession by the devil, tal” and “emotional” distress. Such distress is associ- violence, irrationality, spirituality, and special gifts and ated with pain, sorrow, and anguish. It is difficult to insight. It has been seen in both negative and positive conceive of distress as a positive, although it may be terms. If once it was treated in the West as a condition seen as part of a learning process, or as a predictable of the whole person—body, mind, and spirit—more human response, for example, to loss and bereave- recently it has generally been diagnosed as a disorder ment. Anxiety and depression are two common of the brain. Responses have been spiritual, secular, expressions of such mental distress. Distress may be a and morally based, according to the society in which short-term/crisis event or a long-term state. People madness is identified, based on both superstition and may also experience physical distress. A distinction elaborate theories. It has also long had a parallel may need to be drawn between mental and physical embodiment in the law, in terms of “insanity,” “inca- distress, but it is also possible that one may be inter- pacity,” and “lack of responsibility.” Such legal status linked with the other. has served both as a basis for taking control of people’s Mental health service users/survivors have a ten- money, goods, and affairs and for the imposition of dency to combine the two terms madness and distress Madness and Mental Distress———1051 when they are seeking to offer their own conceptualiza- model of disability. This seems to relate to their growing tions of their identity and situation. This seems to relate focus on the barriers and restrictions to their rights to a sense that neither term adequately carries the full they currently face. These do not seem to be dimin- range of experience and meanings that they wish to ishing significantly and in some cases are experienced convey (and that are associated with being on the as increasing. Mental health service users/survivors receiving end of mental health services). Just as distress experience disproportionately high levels of poverty, may not always be “maddening,” so madness may not unemployment, homelessness, and social isolation. always be distressing. Thus, “madness and distress” They are subject to high levels of stigma, institution- may represent a single construct rather than two. It is alization, and imprisonment. In Western societies, important to take account of this, because there is some black and minority ethnic mental health service tendency to treat “madness” and “distress” as mirroring users/survivors face additional discrimination and traditional medicalized psychiatric and psychoanalytic disadvantage. Policies of psychiatric decarceration concepts of psychosis and neurosis. (without the provision of adequate alternative support Treating the two sets of terms as interchangeable in services) have led to political pressure internationally this way is unlikely to be helpful or accurate. One of for the extension of restrictions on mental health the aims of survivors in developing new language has service users’/survivors’ rights and compulsory “treat- been to challenge rather than retain traditional cate- ment.” This provides the context for their growing gories. Treating “madness” and “distress” as distinct interest in a “social model of madness and distress.” and separate categories is likely to reinforce existing The terminology of “madness and distress” pro- (unhelpful) distinctions between the worried well vides a helpful nonmedicalized framework for a social (“us”) and the mad (“them” and “other”). The termi- model. Such a social oppression/barriers approach to nology of mental health service users/survivors is understanding “mental health” represents a break with intended to be inclusive rather than divisive. In this, it traditional social approaches. These have tended to reflects the same concern as that expressed by many focus on social factors in the generation and conceptu- members of the disabled people’s movement, to avoid alization of “mental health problems” rather than on being “impairment specific,” or, in this case, to privi- social oppression. Discussion of a social model of lege diagnostic categories and to focus instead on madness and distress is still at a relatively early stage, shared concerns and common processing. but it has already highlighted two issues that need to be It is also questionable whether there are clear bound- addressed. First, some mental health service users/ aries between ideas of “madness” and “distress” or survivors do not see themselves as having any kind of “distress” and “madness” that could demarcate a dis- “impairment” or equivalent. They may not accept the tinct group of mad people or madness. The boundaries idea of “madness” as a discrete, objective state, or they are likely to be as imprecise and socially constructed as may reject the idea of it as a negative or a problem. those that relate to perceptions of physical and sensory Instead, they interpret madness as essentially a conse- impairment. It is also helpful to remember that the ter- quence of societal responses to particular people, minology of mental health service users has an under- perceptions, or situations. The view of some disabled lying political purpose. The term psychiatric system commentators that impairment may most helpfully be survivor highlights this. It was developed to emphasize understood (like disability) as socially constructed—as that what individuals in this group have in common is perceived impairment—may offer a helpful way of primarily their (frequently oppressive) experience and taking account of this viewpoint. (hopefully) survival of the psychiatric system. Second, some mental health service users/survivors have emphasized that psychiatric labels and diagnos- THE EMERGENCE OF tic categories have traditionally been attached not only A NEW SOCIAL MODEL to people whose behavior is seen as pathological, defective, or different but also to those whose behav- Mental health service users/survivors and their orga- ior, perceptions, or attitudes are defined as deviant, nizations are showing increasing interest in the social dissident, or nonconformist. Demonstrating compliance 1052———Mainstreaming

(rather than resistance) continues to be an effective well as increase the sensitivity of mental health policy way for service users to be seen as getting “better” or to social model–based disability policy. On this basis, “recovering.” It is important to note, for example, that the concept of madness and distress can be expected some women’s sexual behavior and the sexuality of to have increasing currency and significance. gay men, lesbians, and bisexuals have until recently —Peter Beresford and Peter Campbell been formally and specifically identified and “treated” in the West as forms of psychopathology. This had an See also Mental Health; Mental Health: Law and Policy; Mental extreme expression in the former , where Illness; Psychiatric Survivor Movement. political dissidents were consigned to the psychiatric system. Further Readings Thinking about a social model or approach to mad- Beresford, Peter, Chris Harrison, and Anne Wilson. 2002. “Mental ness and distress is still at an early stage, and it would Health, Service Users and Disability: Implications for Future be wrong to suggest that as yet any clear or agreed- Strategies.” Policy and Politics 30:387–396. upon definitions have been developed. Such discus- Campbell, Peter. 1999. “The Service User/Survivor Movement.” Pp. 195–210 in This Is Madness: A Critical Look at sion is, however, developing. Such a social model is Psychiatry and the Future of Mental Health Services, edited likely to be located within the framework of a social by C. Newnes, G. Holmes, and C. Dunn. Ross-on-Wye, UK: model of disability that is extended to accommodate PCCS. it. Its increased adoption is likely to have at least three Chamberlin, Judi. 1978. On Our Own: Patient-Controlled significant effects. First, judging from the experience Alternatives to the Mental Health System. New York: of the social model of disability, such a social McGraw-Hill. Foucault, Michel. 1961. Folie et Deraison: Histoire de la folie a approach to understanding is likely to alter the focus l’age classique (Madness and Civilization: A History of in mental health policy and practice and among men- Insanity in the Age of Reason). Paris: Plon. tal health service users/survivors. It is likely to shift it Laing, Ronald D. 1965. The Divided Self. Harmondsworth, UK: from a preoccupation with individual deficiency and Penguin. blame to broader social concerns. It will draw atten- Plumb, Ann. 1994. . . . Distress or Disability? A Discussion Document. tion to restrictions imposed on mental health service Manchester, UK: Greater Manchester Coalition of Disabled People. users’ rights and the barriers and discrimination they Szasz, Thomas S. 1961. The Myth of Mental Illness. New York: face—which medicalized responses have generally Harper & Row. failed to do. It is also likely to encourage reconsidera- Wallcraft, Jan, Jim Read, and Angela Sweeney. 2003. On Our tion of “mental health” issues in terms of (ongoing) Own Terms: Users and Survivors of Mental Health Services support and “independent living” rather than in terms Working Together for Support and Change. London: of “treatment,” “cure,” and “recovery.” Sainsbury Centre for Mental Health. It is also to be expected that if it is possible to Websites develop such a social model, which carries credibility and consensus among mental health service users/ Antipsychiatry Coalition, http://www.antipsychiatry.org Mad Pride, http://www.ctono.freeserve.co.uk survivors, it will offer them (in the same ways as the MindFreedom Online, http://www.mindfreedom.org social model of disability has helped disabled people) a clearer and more consistent philosophical basis for their activities and resources. This is important given ᨘ MAINSTREAMING the limits of such resources and the resistance of the psychiatric system to reforming its tendency to incor- The term mainstreaming emerged within the educa- porate and tokenize the efforts of service users/ tional jargon associated with the 1975 Education for survivors working in partnership with it. A social model All Handicapped Children Act (EHA, P.L. 94-142), of madness and distress is also likely to strengthen the early U.S. legislation subsequently reauthorized as links and understandings between mental health the Individuals with Disabilities Education Act (IDEA) service users/survivors and other disabled people, as in 1990. Mainstreaming was a component of the Mainstreaming———1053 principle of the least restrictive environment (LRE) creation of two separate systems of education (which clause of the EHA, which aimed to promote the social continue today), each with its own funding structures, acceptance of students identified for special educa- policy and practice standards, and, most critically, tional services. However, the context was one in distinct teacher preparation programs. In practice, the which students identified as needing special education aims and intentions of mainstreaming were difficult services were typically removed from the general edu- to articulate as the goals that were established quickly cation classroom and, depending on need, reassigned proved antithetical to the everyday demands of to resource rooms for 21 to 60 percent of the school schooling. Special education advocates urged a three- day or to disability-specific classrooms when student pronged approach to mainstreaming in which needs exceeded placement for more than 60 percent of physical, social, and academic considerations would the school day. Students with mental retardation were be merged. Thus, a disabled student would have placed in an MR class, those classified with educable access to receive his or her education in proximity mental retardation were assigned to an EMR class, to the place where other students received their those with emotional disturbance (as per the vernacu- education—regardless of the child’s disability. Place lar of that era) were assigned to an ED class, those was clarified as meaning the same building and same with health impairments were placed in an OHI class, neighborhood school, regardless of its population as a and so forth. These labels—Resource, MR, EMR, ED, preschool, elementary school, junior high school, OHI—were affixed to classroom doors in much the middle school, high school, or technical school. same way other doors read First Grade, Second Social suggested participation in the common social Grade, Library, and so on. In turn, this context nor- activities of the school in nonacademic settings, malized practices such as placing students beside including interactions in the hallways, cafeteria, placards that read “Resource Class,” “MR Class,” library, and playground—that is, interactions within “OHI Class,” and the like when they posed for their the general social milieu of the school. The third annual class pictures. Likewise, students became prong of mainstreaming was specific to instruction known as LD, MR, or ED students. Despite early and the general curriculum. During the 1970s, the warnings by a handful of special educators about the general education curriculum was less restricted negative effects of the overuse of labels, most general by mandates for standardization of instruction and and special educators seemingly viewed the labels as educational outcomes than is the current curricular nothing more than benign markers—mere terminol- context. It was argued then that because students in ogy formulated through the legislation of the EHA. regular classes are not all taught the same things at the Decades would pass before the critical insights of same time, modification of the nature, method, rate, scholars exposed the language of special education as and procedures was commonplace for all students, a powerful mechanism that enforced subjectivities and, hence, it was equally an option for students iden- associated with assigned labels and the presumption tified with special needs. of stigma. Although touted as a policy that guaran- In practice, general educators rarely considered teed all students would have access to the least restric- these integrative criteria, as mainstreaming proved tive environment, this naive interpretation of the law antithetical to the everyday demands of schooling. became a controversial and contested practice by both Instead, the return of special education students to the general and special educators. general education setting was authorized only on the condition that the students demonstrate the “right” AIMS AND INTENTIONS to return. The motivation for this approach to main- streaming was bureaucratically driven—it was a The vexed meaning of mainstreaming was com- means to ensure that general education teachers would pounded by the ambiguities of the EHA and the sub- not be stressed by the demands of disabled students sequent state and local interpretations that followed. who, as a consequence of mainstreaming, might jeop- Moreover, the EHA had unwittingly authorized the ardize the learning of nondisabled students. A rights 1054———Mainstreaming discourse soon emerged, but it was one that pitted the articulated by both general and special educators, in rights of the general education students against those which neither would agree to assume responsibility of special education students. Fear led to educators’ for the mainstreamed student. After a tremendous claims of “injustice” and imagined harm inflicted investment of effort toward the identification, assess- on the rest of their students as a consequence of the ment, referral, and placement of students into special perceived negative impact of mainstreamed students. education, neither general nor special education Moreover, citing the lack of credentials, general edu- teachers were persuaded by the logic of orchestrating cation teachers claimed they were ill prepared and these students’ return to general education. Once a actually unable to accept disabled students back into student was identified with special education needs, their mainstream classrooms. Arguing to these same he or she was removed from the general education ends, professional teachers’ organizations warned classroom in order to receive “specialized” instruction their members to be on guard against the “hazards” of in separate self-contained classrooms with specially mainstreaming. In 1975, the same year the EHA was trained teachers. The processes of identification, authorized by Congress, the president of the National assessment, referral, and placement, although hailed Education Association described the “plight” of a within a rights discourse of “hard-won educational teacher who is “suddenly and for the first time pre- access,” in fact often resulted in restricted access to sented with a blind child, a spastic, an emotionally general education. It was paradoxical that once a disturbed child—or even all three—as additions to the student was physically relocated to special education, 40 ‘normal’ students” (quoted in “NEA Warns” 1975). his or her “right” to return to general education was The NEA urged its members to support mainstream- authorized only on the condition that the student ing only if the plans in their districts met several demonstrate the ability to meet the existing academic specifications that guaranteed a “favorable” learning goals in place for nondisabled students. experience for both handicapped and nonhandicapped Another related paradox emerged as educators ques- students. tioned why a student would want to return to general Implicit within this debate was the belief that the education if his or her academic success was all but learning problems of disabled children stemmed from ensured in special education through the development of individual pathology rather than from instructional or an individualized education program (IEP). Identified institutional pathology. For the most part, general edu- students received their education in what was often cators held firm to the belief that despite procedural characterized in the special education literature as a safeguards, the general education setting was not an “learning-intensive environment.” The norm for this set- appropriate place for disabled students, arguing, “If ting included small class sizes, specialized instruction, they can’t do the work, they don’t belong here.” paraprofessional support, modified curriculum, and pre- scriptive technology targeted to meet individual student PROCEDURES AND PRACTICES needs. This learner-centered setting stood in opposition to the teacher-centered general education classroom, Mainstreaming proved to be one of the many para- which was neither intimate nor individualized. In fact, doxes associated with the implementation of the this was a persuasive selling point, both for the recruit- EHA. Because special education was mandate driven, ment of special educators and for the parents of identi- policy heavy, and procedure intensive—and thus a fied students, who tended to overlook the isolation their highly bureaucratized approach to education—legisla- children would experience in separate self-contained tion, litigation, and fiscal concerns easily diverted its classrooms. Moreover, because instructional remedia- educational aims. Compliance with the law focused tion was predicated on a positivist approach to interven- on the formulation of paper trails to document adherence tion, with treatment aligned to a medical model, it was to the letter of the law. Meanwhile, the spirit of the assumed that this more “scientific” and “prescriptive” law became increasingly more illusory. Mainstreaming approach to learning would promote “individual” gains was a sort of no-man’s land, ill defined and poorly in ways uncommon to general education. Managed Care———1055

Indeed, the approach to learning in special educa- increasingly more difficult to realize as these students tion was one in which tasks were broken down into fell further and further behind their general education various component parts, each of which was then peers on both social and academic measures. The indexed in a hierarchy of simple to complex learning initial belief that identified students might eventually objectives. Students moved through the learning of rejoin the mainstream when their learning deficits had bits of discrete knowledge on the assumption that been remediated was all but extinguished by shifting more complete learning would result from this incre- attitudes relative to who does and does not belong in mental approach. Exclusively behavioral models for the mainstream classroom. learning—including task analysis, direct instruction, —Linda Ware drill and practice, and rote memorization—formed the core of special education instruction. Accompanied by See also Education, Primary and Secondary; Education and the use of reward systems and token economies, these Disability; Race, Disability, and Special Education; Special practices reinforced the view that student learning in Education. bits and pieces took precedence over contextualized Further Readings learning within a broader holistic and emancipatory framework. The pedagogy, methodology, and learning Cruikshank, W. M. 1977. “Least Restrictive Placement: context in special education and that common to the Administrative Wishful Thinking.” Journal of Learning Disabilities mainstream setting proved to be worlds apart. 10:193–194. Gallagher, D. J. 2003. Challenging Orthodoxy in Special Government-sponsored research on effective Education: Dissenting Voices. Denver, CO: Love. educational practices was another legitimating force that National Education Association. 1978. Mainstreaming (audio- helped to shape the chasm between general and spe- cassette series). Washington, DC: National Education cial education. Federal dollars allocated to university Association. researchers privileged positivist methods over inte- “NEA Warns of the Hazards of Mainstreaming.” 1975, October National Education Association Newsletter. grated and holistic approaches to learning, which in 22. Zigler, E. and S. Muenchow. 1979. “Mainstreaming: The Proof Is turn advanced a reductionist approach to learning and in the Implementation.” American Psychologist 34:993–996. prompted calls for even greater specialization among professionals. Unwittingly, this government-sponsored Websites research reified the belief that a “highly qualified National Council on Disability, http://www.ncd.gov teacher” is most capable of educating disabled U.S. Department of Education, Office of Special Education and students. Curiously, the link between the university- Rehabilitative Services and Office of Special Education based researchers and their institutions’ agendas Programs, http://www.ed.gov/about/offices/list/osers/osep/ specific to the expansion of their own teacher training index.html?src=mr programs was never questioned as a conflict of inter- est. The long-term effect of an overreliance on the tra- ditional empirical research generated by many of the ᨘ MANAGED CARE nation’s largest academic programs in special educa- tion was the reinforcement of the beliefs that some For persons with physical and mental disabilities, students really do not belong in regular education and managed care presents both a threat and an opportu- that some, but not all, teachers are responsible for all nity. Persons with disabilities have much to gain from learners. truly and responsively integrated managed care In time, this research fed the deeply entrenched health delivery systems. However, persons with dis- attitudes that continue to divide general and special abilities also bring atypical, complex, and, in many educators today. It is a belief that has proven to be one cases, long-term service needs that managed care of the greatest obstacles to the inclusion of disabled organizations may be reluctant to address because of students in public education. Ultimately, the goal of the increased clinical and financial risks these needs successfully mainstreaming identified students proved represent. 1056———Managed Care

The origins of managed care can be traced to the To develop selective contracts, managed care late nineteenth century, when a small number of physi- organizations use health care claims data to compare cians in several U.S. cities agreed to provide prepaid the prices that different hospitals and physicians medical care to members of fraternal orders, unions, charge for the same treatments in order to identify the and other associations of workers. The physicians gave lowest-priced providers. In highly competitive health the members of these organizations unlimited access to care markets with many providers, large managed the health care services they provided in exchange for care organizations with hundreds of thousands of a small annual fee per member. In the early twentieth enrollees can selectively contract with individual hos- century, railroad, mining, and lumber companies orga- pitals and physicians and receive substantial discounts nized their own medical services or contracted with for the provision of health care to their members. The medical groups to provide care for their workers. providers are willing to give deep discounts to these During the Great Depression of the 1930s, prepaid organizations to avoid losing large numbers of patients. contracts between employers and employee associa- Providers also can retain or build a greater market tions were relatively common. Starting in the 1970s, share by giving these discounts. the federal government and many large private compa- Managed care organizations frequently provide nies began encouraging their workers to join prepaid innovative economic incentives to patients and physi- forms of health care groups. Despite this encourage- cians to encourage them to select less costly forms of ment, however, prepaid group practice grew slowly. In health care. For example, organizations may require the mid-1980s, employers increasingly turned to man- patients to obtain preauthorization before using hospi- aged care to contain the spiraling cost of providing tal emergency rooms to receive care for specific con- health care benefits to workers. During the 1990s, ditions. They also may discourage patients from using managed care enrollments soared. Today, the vast higher-priced health care institutions such as costly majority of privately insured Americans, and a sizable teaching hospitals for routine care. To control costs, fraction of those in the government-sponsored some managed care organizations, such as HMOs, put Medicare and Medicaid programs, are covered by their physicians on fixed salaries. They can then adjust some form of managed care. the salaries up or down annually based on perfor- Despite the large number of persons enrolled in mance, rewarding those physicians who contain costs managed care programs, it is difficult to define pre- and punishing those who do not. cisely what managed care is. The definition of man- To conduct utilization reviews, many managed care aged care has changed significantly through time as organizations have established their own sophisticated the concept of managed care has evolved. Currently, internal computer information systems that monitor managed care can be broadly defined as any organized provider prices and the quality of health care received system of health care that attempts to reduce or by their enrollees. Many have also developed a variety eliminate services that system representatives deem of utilization review programs that include such ele- ineffective or unnecessary in order to hold down costs ments as preadmission screenings (to determine while at the same time maintaining high-quality health whether a patient should enter a hospital or receive treat- care. Most managed care is carried out in one of two ment elsewhere), surgical second opinions, and ongoing basic types of health care organizations: health main- reviews of high-cost cases (such as patients with tenance organizations (HMOs) or preferred provider HIV/AIDS and those receiving complex cancer care). organizations (PPOs). Of the three strategies described above, the evi- Managed care organizations use a variety of meth- dence to date clearly shows that selective contracting ods of financing and organizing the delivery of health has been the most effective in lowering costs for care to control costs. Specifically, managed care relies managed care organizations. The evidence on innov- primarily on three strategies for success: selective con- ative economic incentives is weaker, and evidence tracting, innovative economic incentives, and utiliza- on the effectiveness of utilization review is virtually tion review. nonexistent. Managed Care———1057

Initially, managed care organizations targeted unique needs of people with diverse physical and generally healthy populations, placing emphasis on mental disabilities. Further, they may not have the maintaining health and preventing disease. Recently, time or inclination to provide care to such patients. however, managed care has moved into less traditional With their emphasis on primary care and cost con- markets, including managing health care for individu- tainment, managed care organizations may not provide als with chronic illnesses and various disabilities. people with disabilities adequate access to needed spe- Managed care has the potential to be of great benefit cialists who are qualified to diagnose and treat their to people with disabilities in comparison with traditional special health care conditions. For example, managed fee-for-service systems or typical government-sponsored care organizations may stop referrals to psychiatrists, programs. By its very nature, managed care tends to who tend to provide more comprehensive treatment decrease or eliminate individuals’ incentives to overuse than other mental health professionals. In addition, services. It generally reduces patient out-of-pocket the complexity of managed care organizations’ referral expenses and other financial barriers to health care. procedures and complaint and grievance processes, Managed care also has the potential to achieve better and the materials that describe these aspects of man- coordination of patient services. Given that most man- aged care, may create tremendous barriers for individ- aged care organizations use the primary care physician to uals with cognitive or learning disabilities. direct and structure the patient’s total treatment, in theory Because managed care organizations deal primarily the services provided should be more logical, cus- with the needs of healthy people, they may use defini- tomized, and prompt than they would be under other sys- tions of “medical necessity” that work against people tems. Thus, under managed care, persons with disabilities with disabilities. For example, they may apply criteria should experience less frustration and confusion from that call for “substantial improvement” or “restoration of splintered service provision, which can be commonplace function” as conditions for the authorization of treatment, in public programs. Managed care, through its use of medication, or medical equipment. This may discrimi- internal computer information systems, also has the nate against individuals with certain types of physical or potential to monitor the quality of care and assess the mental disabilities who cannot meet these standards. performance of both individual patients and their physi- Managed care organizations may have narrow short- cians more efficiently. Finally, some managed care orga- term business perspectives that ultimately may result nizations provide transportation services for patients in decisions that harm people with disabilities. Because between their homes and the facilities where they receive many of these organizations operate on a for-profit care. These services may be vital for patients with major basis and so must generate an appropriate return on disabilities, especially those who live in areas without equity to their owners or shareholders, administrators any public transportation. may be under great pressure to hold down short-run Managed care also poses a number of formidable costs. To do so, they may deny patients access to ongo- problems for people with disabilities, however. For ing ancillary services, such as speech, physical, and example, managed care organizations may design and occupational therapies, or they may withhold costly direct their marketing programs to attract only gener- medical equipment from individuals with disabilities ally healthy populations. They may overtly and covertly who truly need them. These patients may suffer in the discourage enrollment of individuals who are likely to long term because of these shortsighted decisions. be users of costly health care services. Because patients To date, no rigorous scientific evaluations have with disabilities may be frequent users of specialists conclusively demonstrated that managed care has and other high-cost medical services, managed care improved the quality of life or the health outcomes of organizations may view them as undesirable patients. persons with disabilities. As noted above, managed care organizations typi- —Ross M. Mullner and Kyusuk Chung cally use primary care physicians as “gatekeepers” to control access to care. These physicians may not have See also Health Care Systems; Health Management Systems; the necessary experience or expertise to address the Political Economy. 1058———Maternal Imagination

Further Readings such stories, a pregnant woman exposed to traumatic Anderlik, Mary and Wendy Wilkinson. 2000. “Legal Protections or highly sensitive stimuli can translate those impres- for People with Disabilities in Managed Care.” Retrieved sions to the developing fetus. A pregnant woman who July 20, 2003 (http://www.ilru.org/mgdcare/rrtenewsletter is startled by a frog, for instance, could imprint her .html). impression onto the body of her child; that is, her Birenbaum, Arnold. 1999. Disability and Managed Care: child’s body might manifest physical evidence of the Problems and Opportunities at the End of the Century. event, such as webbed toes or fingers or a froglike Westport, CT: Praeger. Dranove, David. 2000. The Economic Evolution of American head. A woman who gazes too obsessively at a portrait Health Care: From Marcus Welby to Managed Care. of Christ might be shown her excess by giving birth to Princeton, NJ: Princeton University Press. a bearded child. Thus, perceived corporeal strange- Kongstvedt, Peter R. 2002. Managed Care: What It Is and How It ness in the infant also reflects back to the mother a Works. Gaithersburg, MD: Aspen. “lesson” concerning her affect and demeanor. Mitchell, Laura Remson. 1998. “Managed Care: Dangers for Contemporary scholars discuss how explanations Persons with Disabilities.” Retrieved July 20, 2003 (http:// www.geocities.com/dhcpolwnk/mngcare.html). based in maternal imagination theory nonetheless Shoaf, Lisa Donegan. 1999. “Defining Managed Care and Its bestow on mothers an extreme amount of control over Application to Individuals with Disabilities.” Focus on the plasticity, form, and shape of their children’s bod- Autism and Other Developmental Disabilities 14(4): ies. While the theory holds woman culpable for the 240–250. appearance of congenital disability, it does usurp a Sutton, Janet P. and Gerben DeJong. 1998. “Managed Care and small aspect of the patriarchal belief in the supremacy People with Disabilities: Framing the Issues.” Archives of Physical Medicine and Rehabilitation 79:1312–1316. of male seed in the gestation process. This early etiological theory of disability was most influential during the early European Enlightenment, ᨘ which occurred from the late sixteenth to the early MARTHA’S VINEYARD eighteenth century. Nonetheless, one can find similar See Deafness, on Martha’s Vineyard theories of women’s impact on parturition across histories and cultures. The early Latin story of Marulla and Cinna, who gave birth to seven monstrous children, ᨘ MATERNAL IMAGINATION provides a prime example of the adulterous mischief of mothers reflected in the strange aspects of their Maternal imagination is the concept that oddities in children, but it is not a matter of the sensibility or infants occur as the result of thoughts by the mother emotional experiences of a mother imprinting them- during parturition. Although the interpretation of selves onto a life-form. Instead, Cinna bears the blame maternal imagination as a root cause for birth anom- for producing strange children by deliberately cavort- alies does not wholly refute the idea of supernatural ing with one who is a “natural” and “black” or “red” causation, it does signal a move toward scientific for- children by crossing codes of color conformity: “Two mulations of the etiologies for congenital disabili- sisters, one black, the other red, are Crotus the flautist’s ties. Any kind of parental blame spells difficulty for and Carpus the bailiff’s. You would now have a troop disabled persons, who may thus have their lives less as numerous as Niobe’s, if Coresus and Dindymus welcomed than those of others. Maternal imagination had not been eunuchs.” is different, however, from the perception that corpo- Debates about the prevention of birth defects real differences are signs from a supernatural realm or continue to emphasize the behavior and habits of the harbingers of danger. mother during pregnancy. Many environmental causes The theory of maternal imagination hinges on an or congenital properties are assigned to maternal habits understanding of women’s bodies as highly suscepti- and modes of existence; for example, low birth weight ble to powerful external events, and tales about such in newborns is now frequently determined to result from susceptibility abound in the literature. According to maternal stress. Babies that are deemed to mix skin Maternal Imagination———1059 tones in racially polarized societies can be held out self-reflexive perspective. Such entries in the Western as a matter of maternal impropriety. In Third literary canon also forward these perspectives as disrup- Germany, German mothers of mischling children, tive moments to competitive versions of the normalcy of whose fathers might be African, Jewish, or Romany, a national “stock” in which early modern nations, with were publicly shamed and punished. The children them- census taking of disabled persons, engaged. selves were frequently sent to institutions that partici- The debate over maternal imagination as a reliable, pated in genocidal “cleansing” of the German “race.” scientific barometer for birth anomalies largely circu- Throughout the Renaissance and premodern period, lated around medical theorizing about the degree to “monstrous births” were often attributed to maternal which fathers could be held culpable for “disastrous” imagination, although they were sometimes linked to births. Marie-Helene Huet discusses these issues in other “mechanical causes,” such as a narrow uterus or detail in her book Monstrous Imagination (1993). If inappropriate sitting positions of gestating mothers. the theory of the supremacy of male seed provided The stuff of bawdy songs and legend, such births were masculinity with a controlling role in the course of sensationally cataloged in publications called “wonder pregnancy, then such an emphasis helped make male books.” Fortuno’s Monstrum (Italian, 1646) and Pare’s partners more central to procreation itself. However, Of Monsters and Marvels (French, 1585) contain such centrality in the reproductive process came with well-known and quite remarkable examples. The won- its own costs. If the birth of a disabled child was der book collected instances of strange and unnatural viewed as a “failure” or developmental mishap, to occurrences for prurient audience interests in observ- what degree did the male partner share the blame in ing disability. These early Enlightenment books served such an event? Maternal imagination has been dis- to mediate between more metaphysical systems of dis- cussed as a desperate resolution to this conundrum ability interpretation implied by ideas about divine without relinquishing men’s centrality in pregnancy. or satanic intervention in fetal developmental processes. A mother’s influence over extreme birthing results While fanciful to a viewer from the twenty-first cen- would expand only during instances of congenital dis- tury, they indeed anchor developing empirical systems ability. In fact, as in contemporary examples of the of medical observation. Wonder books served as births of disabled children, fathers often abandoned transitional texts between supernatural explanations and households after the births of children with medically more “naturalistic” explanations for what we recognize remarkable distinctions. In this context, then, the idea as congenital disability today, while unsure of any of maternal imagination might be exculpatory for belief for supernatural purposes. fathers in order to dissuade them from abandonment. One perspective always absent from the wonder book However, there have also been efforts—particularly was that of the “monstrous” individual—instead, each among feminist critics—to interpret maternal imagina- figured as a “marvelous” specimen. We can start to tion as an opportunity for reading women’s expanding piece together a tradition of voiced commentary by sub- agency in their own reproductive lives. For instance, a jects in dramatic and poetic traditions. In Shakespeare’s value in the idea of inherited traits could go astray for a Richard III, the protagonist contemplates his own birth woman who gave birth to a child in whom a family predicament as “scarce half made-up.” Abandoned at resemblance was not forceful. This might be the situa- birth, Quasimodo, the title character in Victor Hugo’s tion, for instance, in cases of Caucasian women giving classic novel The Hunchback of Notre Dame, is sealed birth to racially mixed children or in cases of severe dis- off from contact with other townspeople. In a journalis- ability. In order to distance themselves from the social tic interlude quoted verbatim by William Carlos opprobrium of sex outside of marriage, women some- Williams in his epic poem Paterson, George times actively sought refuge in claims to maternal Washington visited a man with severe hydrocephaly to imagination. For instance, in one famous case, Marjorie trade quips on late-eighteenth-century American poli- Sheldrake, who gave birth to a “severely deformed” tics. In each of these instances, an individual deemed a child in England in the mid-eighteenth century, argued “monstrous birth” begins to give voice to a nuanced, against the charge that she had had intercourse with a 1060———Maugham, W. Somerset (1874–1965) man other than her husband by claiming maternal contemporary account of maternal imagining during imagination. Given that she was scheduled to go on a the experience of inhabiting a multiplying can be found trip to Australia after giving birth, Sheldrake claimed in Julia Kristeva’s “Stabat Mater” (1987). that images of kangaroos and other exotic scenes that —Sharon L. Snyder she contemplated during pregnancy directly influenced the development of what would have been an otherwise See also Family; Gender; Models. paternally mimetic infant. While such recourse to the influence of exotic cultures may seem fraught with Further Readings racial and cultural anxieties about difference, such Gould, George M. and Walter L. Pyle. 1901. Anomalies and arguments provided women with access to less severe Curiosities of Medicine: Being an Encyclopedic Collection forms of public disapproval and familial suspicion. of Rare and Extraordinary Cases, and of the Most Striking At root, the theory of maternal imagination devel- Instances of Abnormality in All Branches of Medicine and Surgery, Derived from an Exhaustive Research of Medical oped as a reaction to widespread patriarchal suspicions Literature from Its Origin to the Present Day, Abstracted, that women’s sexuality was untrustworthy. Because Classified, Annotated, and Indexed. London: W. B. Saunders. femininity’s association with irrationality and embodi- Huet, Marie-Helene. 1993. Monstrous Imagination. Cambridge, ment led to explanations of female volatility, maternal MA: Harvard University Press. imagination functioned as a symptom of many super- Kristeva, Julia. 1987. “Stabat Mater,” translated by Leon S. ficial ascriptions. An equation of failed differentiation Roudiez. Pp. 234–263 in Julia Kristeva, Tales of Love. informed these explanations. Whereas male subjectiv- New York: Columbia University Press. Shildrick, Margrit. 2002. Embodying the Monster: Encounters ity relies on perceptions of bodies as whole, coherent, with the Vulnerable Self. London: Sage. and autonomous, women’s bodies, in their many sexed differences, often appear unstable by contrast. Power structures, such as patriarchy, may directly define ᨘ women’s bodies as excessive, or as what Julia Kristeva MAUGHAM, W. SOMERSET (1987) has theorized as abject. Abjection is a compulsive (1874–1965) rejection of body types that are determined to exceed British novelist and playwright acceptable mandated standards for participation in social life. They appear to espouse a refusal of norma- W. Somerset Maugham was born in Paris in 1874, the tive boundaries and strict cultural assignment. sixth and youngest son of the solicitor to the British A gender theory of body difference can also be embassy. His mother died when he was 10 years old, critical for assessing the different reactions to disabled and he was sent to live with an uncle in England. After bodies in culture insofar as cognitively, physically, attending university, Maugham studied medicine for six and sensorially impaired bodies, by definition, resist years in London, qualifying in 1897 as doctor from St. normative classifications. The classic 1896 textbook Thomas’ Medical School, but he abandoned medicine Anomalies and Curiosities of Medicine begins with a after the success of his first novels and plays. Maugham section devoted to menstruation as the matter of a had considerable success first as a playwright and medical anomaly. Many bodies present radical chal- satirist and later as a novelist and short story writer. lenges to Euro-American investments in the myth of a Loss and disability strongly influenced Maugham’s narrow bodily spectrum of variation. In this sense, work. He had a severe stammer that left him afraid to maternal imagination and the often radically divergent speak. He led a double life both in sexuality and, for a bodies that result threaten to expose premises of brief while, occupation. He continued for many years bodily integrity that inform models of standardized both his marriage and his affair with an American embodiment. Pregnancy itself, harboring multiple man; he also worked as a British intelligence agent bodies and presenting quickly growing elements, during World War I. Perhaps the most profound life challenges boundaries of singularity and body life. event he experienced was the death of his mother Indeed, arguments about the modifications of environ- when he was a child, an event from which he claimed ments that best suit pregnant bodies abound. A famous he had not recovered some 50 years later. Themes of McDonald, Anne (1961– )———1061 disability and uncontrollable longing are vividly In 1977, when McDonald was 16 years old, Rosemary portrayed in his classic novel Of Human Bondage, Crossley taught her to read and to communicate by which was published in 1915. The protagonist, Phillip spelling. Because of her severe physical disability Carey, is a medical student who is embarrassed and McDonald needed someone to support her arm while she publicly humiliated by his professors and fellow pointed at letters on an alphabet board. Once she was able students because of his clubfoot. Carey conducts an to make her wishes known, she sought her discharge from ill-fated relationship with a selfish waitress who reap- St. Nicholas. The hospital authorities denied her request pears at the end of the novel with all the signs of on the grounds that the reality of her communication had tertiary syphilis. The mixing of sexuality, disability, not been established. McDonald instructed a lawyer to and subcultures is more clearly developed in this take an action for habeas corpus in the Victorian Supreme novel than in the works of other authors using similar Court. She won the case and was released from the hos- themes. pital in 1979. In 1980, she and Crossley coauthored a best-selling book, Annie’s Coming Out, which was made —Joseph A. Flaherty into an award-winning film of the same title (released in the United States as Test of Love). She later graduated Further Readings from Deakin University. Archer, Stanley W. 1993. W. Somerset Maugham: A Study of the McDonald’s story contributed greatly to the move to Short Fiction. New York: Twayne. community care for people with disabilities, which started with the closure of St. Nicholas Hospital in 1985 and subsequently spread throughout Australia. ᨘ McDonald has been a notable campaigner for the rights MCDONALD, ANNE (1961– ) of people with expressive communication impairments, Australian disability activist helping to establish the Communication Aid User Society, the world’s first organization founded by people Anne McDonald was born with athetoid cerebral without speech, in 1981. Her 1993 statement on the right palsy and was originally diagnosed as having pro- to communicate has been adopted by the U.S. organiza- found intellectual impairment. She is unable to walk, tion TASH (the Association for Severe Handicaps): talk, or use her hands effectively. At the age of three she was placed in St. Nicholas Hospital in Melbourne, The right to communicate is both a basic human Australia, a government institution for people with right and the means by which all other rights are severe intellectual disabilities; she stayed there for 14 realized. All people communicate. In the name of years. She later wrote: fully realising the guarantee of individual rights, we must ensure The hospital was the state garbage bin. Very young children were taken into permanent care, regardless • of their intelligence. If they were disfigured, distorted that all people have the means of communica- or disturbed then the world should not have to see or tion which allows their fullest participation in acknowledge them. You knew that you had failed to the wider world; • measure up to the standard expected of babies. You that people can communicate using their cho- were expected to die.... sen method, and • Nurses were discouraged from cuddling children. that their communication is heeded by others. A crying child needed to be punished for its own good, so it would learn to accept the absence of affec- Where people lack an adequate communication tion and be happy. Punishment consisted of locking system they deserve to have others try with them to the crying child in a small dark storeroom. The hos- discover and secure an appropriate system. No person pital defined a happy child as a quiet child. Silence should have this right denied because they have been was not only golden but sullen; the nurses never saw diagnosed as having a particular disability. Access to the looks we gave them when a child was put away. an effective means of communication is a free speech (Crossley & McDonald 1980:16) issue. (pp. 21–22) 1062———McMillan, Mary L. (1880–1959)

In a 1992 address to TASH, McDonald said: today known as the American Physical Therapy Association (APTA). Born in Hyde Park, Massachusetts, For people without speech, talking is often dependent McMillan was raised by cousins in Liverpool, on the generosity of others, either in providing inter- England, and graduated from Liverpool University in pretation or facilitation or in giving up time to listen. 1905. Her interest was attracted by the new field of While this is inevitable, there needs to be an irre- physical culture and corrective exercise, which she ducible right to make one’s opinions known on issues studied along with such medical subjects as neurology concerning your future well-being. At the moment and anatomy. After several years of working with social conversation and medical consent are equal in polio and scoliosis patients as well as patients living the sight of the law, both depending on the accidental availability of communication partners with the nec- with the aftereffects of industrial accidents, McMillan essary skills and commitment. returned to the United States, where in 1918 she There is no right to be heard. There is no right to became the first volunteer to respond to the U.S. sur- an interpreter. There is no obligation to listen. geon general’s call for reconstruction aides to work While social interactions will always be dependent with injured veterans at Walter Reed Army General on the politeness and tolerance of individuals, it should Hospital. Later in 1918, she was asked to move to be possible to legislate for a right to communicate in Reed College in Portland, Oregon, to organize three- formal situations such as courts, hospitals and schools. month training programs for 200 new reconstruction Without such legally enforceable rights, people with- aides needed for the war effort. This successful effort out speech are at the mercy of decision-makers who led to her recall to Walter Reed to establish an army- can arbitrarily decide to disallow communication. based education program. (The fact that she worked at Communication falls into the same category as the two “Reeds” has led to much confusion about food, drink and shelter—it is essential for life, and McMillan’s efforts and which of the two programs she without it life becomes worthless. founded was the first.) —Chris Borthwick After World War I, McMillan was the driving force behind the formation of a professional organization See also Activism; Advocacy. for physiotherapists. Following a meeting of some Further Readings 20 women and a few physicians at Keen’s Chop House in New York City, the forerunner of the APTA Brealey, Gil, dir., and Don Murray, prod. 1984. Annie’s Coming was founded with McMillan as its first president. Out (film). Sydney: Film Australia. Crossley, Rosemary and Anne McDonald. 1980. Annie’s Coming The organization’s structure was similar to that of the Out. Melbourne: Penguin. British Chartered Society of Trained Masseuses, and McDonald, Anne. 1992. “The Right to Communicate.” Address standards for training and ethics were important ele- presented at TASH Conference, San Francisco. ments of the fledgling association. Along with guiding ———. 1993. “I’ve Only Got One Life and I Don’t Want to Spend the new organization, McMillan published her book It All Proving I Exist.” Communicating Together 11(4). Massage and Therapeutic Exercise in 1921. She went ———. n.d. “The Right to Communicate.” Retrieved April 21, 2005 (http://home.vicnet.net.au/~dealcc/Anne2.htm). on to teach at Harvard University until 1932, when she went to Peking Union Medical College to become Websites director of physical therapy under the auspices of the Anne McDonald’s Institution Page, http://home.vicnet.net.au/~ Rockefeller Foundation. Caught in Manila at the out- dealcc/Anne2.htm break of World War II, McMillan was interned at the Santo Tomas camp. While there, she set up clinics to treat the wounds and disabilities of ᨘ MCMILLAN, MARY L. (1880–1959) combatants with whatever was on hand. Like many American physical therapist others, she developed severe nutritional deficiencies during her stay in the camp. Later she was transferred Mary Livingstone McMillan, “Molly” to her friends, to the Chapei prison camp near Shanghai, where she was the founder and first president of the American remained until 1944, when she was repatriated on the Women’s Physical Therapeutic Association, which is Swedish American ocean liner Gripsholm. Medical Futility———1063

At her death in 1959, McMillan left a large part of physicians were encouraged not to treat patients who her estate to fund a scholarship program for all levels were overmastered by disease. Similarly, in Catholic of education for physical therapy students. The pro- bioethics, physicians are not bound to provide gram is administered by the APTA, which has also “heroic” or “extraordinary” treatments—that is, treat- honored her memory with the establishment of the ments that are rare and expensive, that offer little hope Mary McMillan Lectureship, which began in 1964. of benefit and involve significant pain or inconve- nience to the patient. —Helen J. Hislop and The term extraordinary treatment has also found its Suzann K. Campbell way into legislation. For example, in the Northern See also Physical Therapy. Territory of Australia, the Natural Death Act 1988 (NT) states that Further Readings Archive, American Physical Therapy Association, Alexandria, VA. “extraordinary” treatment means medical or surgical Elson, Mildred O. 1964. “The Legacy of Mary McMillan.” measures that prolong life, or are intended to prolong Journal of the American Physical Therapy Association life, by supplanting or maintaining the operation of 44:1067–1072. bodily functions that are temporarily or permanently Murphy, Wendy. 1995. Healing the Generations: A History of incapable of independent operation. Physical Therapy and the American Physical Therapy Association. Alexandria, VA: American Physical Therapy However, in the past two decades, the terms heroic Association. and extraordinary treatment have been used with Websites decreasing frequency. By the 1980s and 1990s, com- mentators began to rely more often on the term American Physical Therapy Association, http://www.apta.org medical futility.

ᨘ MEDICAL FUTILITY APPROACHES TO DEFINING FUTILITY

Medical futility is a term used to describe situations in There are two main approaches to defining medical which medical investigations and treatments have futility. One is the quantitative approach, by which a little or no beneficial effect on a patient. A futile treat- treatment is judged to be futile when it fails (or is ment is one that will not cure the patient’s illness or known to fail) to achieve certain physiological goals. improve the patient’s quality of life. When treatments This could also include those treatments that have a are said to be futile, health professionals owe no duty very poor probability of success or that will fail to to provide them to patients, and, it is argued by some, postpone the onset of death. Second is the qualitative doctors can refuse to provide such treatments even approach, which looks not only at physiological suc- when patients or substitute decision makers request cess but at quality-of-life factors, such as comfort, them. Medical futility is therefore an extremely con- well-being, and cognition. The simplest definition of troversial term, primarily because health professionals futility using this approach is treatment that cannot can use it as a way of closing the debate about treat- return a patient to consciousness or that cannot end ment provision and resource allocation. It is also con- the patient’s dependence on intensive medical care. troversial because it has proven extremely difficult to Included in this assessment would be treatments that define. may have success in prolonging life but do so at a great cost to the patient’s quality of life, for example, by inflicting enormous pain and discomfort. The ETHICAL UNDERPINNINGS qualitative approach therefore focuses on the ends or OF MEDICAL FUTILITY goals of medicine, those being primarily the absence of disease or disability. If a treatment will not be Concepts of futility can be found in the earliest able to achieve these ends, then it can be considered writings on medical ethics. In the Hippocratic corpus, futile. 1064———Medical Futility

PROBLEMS WITH MEDICAL FUTILITY have authorized its withdrawal. For example, the Supreme Court of California said such feeding was Clinical Uncertainty futile in Barber v. Superior Court of the State of The first problem with the concept of medical California (1983). Similarly, the House of Lords futility is that all assessments of quantitative futility found in Airedale Trust v. Bland (1993) that the con- are uncertain. While evidence-based medicine has tinued artificial feeding of a patient in a permanent improved our understanding of the success of treat- vegetative state served “no therapeutic purpose of any ments across populations of patients, it remains kind” and that it is the “futility of treatment that justi- extremely difficult to judge the possible outcomes of fies its termination.” Critics of these decisions have treatment for individuals. Additionally, there is no argued that the language of futility has shifted imper- consensus as to when the probability of a treatment’s missibly from an examination of futility of treatment success will be low enough for the treatment to be to consideration of whether the lives of the patients classed as futile. As Kerridge, Mitchell, and McPhee are futile. (1997) point out, some doctors might think a treat- ment is futile when it has zero chance of success, RESOLVING DISPUTES ABOUT FUTILITY whereas others might make the same judgment when the treatment has a 10 percent chance of success. Given that a purely objective and noncontroversial definition of futility does not seem to be possible, it is logical to assume that disputes about futility will con- Discourse That Disguises Value-Laden Judgments tinue. How are such disputes to be resolved? The assessment of medical futility, particularly of If the determination of futility were limited to qual- qualitative futility, is laden with value judgments itative knowledge of medical probabilities, it might be about the quality of a patient’s life. Physicians con- arguable that debates about futility should be confined sider factors such as the pain that will be caused by a within the medical profession. Conversely, if the defi- treatment, the level of awareness of the patient, and nition of futility includes consideration of factors the patient’s age. The ethical integrity of the medical of quality of life, medical professionals should be the profession may not provide a sufficient safeguard to only people to contribute to the debate. prevent improper discrimination in this context. Increasingly, it appears that the courts are being Problems of hidden values are exacerbated in the asked to resolve disputes about whether treatment end-of-life context, particularly in regard to decisions should be provided to patients when health profes- concerning the artificial feeding and hydration of sionals have deemed that such treatment is futile. In patients in permanent vegetative states. If a person is in the United States, much commentary was generated a permanent vegetative state, it might be argued that it by the case In the Matter of Baby K (1994), which is futile to continue artificial feeding and hydration involved a decision by a hospital not to resuscitate a because such treatment will not return the patient to baby born with anencephaly (a congenital malforma- sensate awareness. Nevertheless, it can equally be tion where the upper brain, skull, and scalp are miss- argued that the treatment is not futile (and in fact ing). The child had frequent presentations to the works extremely well) because it continues to keep the hospital (from the nursing home where it resided) patient alive, even after the death of the higher brain. because of breathing difficulties. The hospital This example illustrates the fact that applying the term believed that respiratory therapies were futile given futility does not by itself resolve the underlying con- the baby’s inability ever to achieve cognition or flict about whether such treatment should be provided. awareness. The child’s mother disagreed and insisted Other considerations, such as the best interests of the on treatment for the child. The court found that the patient or substituted judgment, are determinative. hospital’s decision breached Medical Universally, common-law courts have found that Treatment and Active Labor Act, a statute aimed at artificial feeding in such circumstances is futile and ending the practice of patient dumping; the act Medical Theater———1065 requires hospitals to stabilize patients before moving example, the Texas Advance Directives Act of 1999 them to other institutions. provides for a process of ethical review of futility Some commentators have seen the Baby K decision determinations that includes dispute resolution as an unnecessary expansion of patients’ rights, so that services when doctors and families cannot agree about patients (or their representatives) can demand and whether treatment is futile. receive unnecessary, expensive, and unethical treat- —Cameron Stewart ment. Others have argued that the decision is limited in scope, noting that it focuses on the narrow question See also Consent to Treatment; Refusal of Life-Sustaining of statutory interpretation and has not always been Treatment. followed in later decisions. Similar cases have arisen elsewhere. In the United Further Readings Kingdom, futility arguments were raised in the case of Airedale Trust v. Bland, 1 WLR 316 (1993). Glass v. The United Kingdom (2004). In this case, American Medical Association. 2004. “Current Opinions of the doctors had decided to enter a not-for-resuscitation Council on Ethical and Judicial Affairs.” Retrieved April 20, order on the chart of a disabled child without the con- 2004 (http://www.ama-assn.org/ama/pub/category/8288.html). Barber v. Superior Court of the State of California, 195 Cal. Rptr. sent of the child’s mother. The child was also given 484 (1983). diamorphine against the mother’s wishes. The child Fine, R. L. and T. W. Mayo. 2003. “Resolution of Futility by Due had been treated for complications arising from Process: Early Experience with the Texas Advance Directives surgery, and the doctors believed that resuscitation Act.” Annals of Internal Medicine 138:743–746. and aggressive respiratory treatment were futile. The Glass v. The United Kingdom, European Court of Human Rights, mother disagreed with the doctors’ assessment. After March 9, 2004. Retrieved April 20, 2004 (http://www.echr .coe.int/Eng/Judgments.htm). a fracas between the child’s relatives and medical In the Matter of Baby K, 16 F.3d 590 (1994). staff, the child was resuscitated and, eventually, Kennedy, Ian and Andrew Grubb, eds. 1998. Principles of discharged from the hospital. After the Court of Medical Law. Oxford, UK: Oxford University Press. Appeal of England and Wales refused to review the Kerridge, Ian, K. Mitchell, and J. McPhee. 1997. “Defining hospital’s decision, the mother successfully sued the Medical Futility in Ethics, Law and Clinical Practice: An Journal of Law & Medicine U.K. government in the European Court of Human Exercise in Futility?” 4:235–242. Rights. That court found that the doctors’ failure to “Medical Futility Comprehensive Bibliography.” n.d. Retrieved gain consent from the mother or from a court meant April 20, 2004 (http://www.okstate.edu/artsci/philosophy/ that the family life rights of the patient and his mother futility/futall.htm). had been breached. This case clearly demonstrates the Schneiderman, L. J., N. S. Jecker, and A. R. Jonsen. 1990 problems with both quantitative (given the boy’s sur- “Medical Futility: Its Meaning and Ethical Implications.” Annals of Internal Medicine vival) and qualitative (given the dispute between the 112:949–954. family and the doctors about the child’s quality of life) approaches to judging medical futility. ᨘ MEDICAL MODELS THE WAY FORWARD? See Models Given the failure to find an acceptable definition of medical futility, some commentators have suggested that what is needed is a process whereby disputes can ᨘ MEDICAL THEATER be mediated and consensus can be achieved regarding the meaning of whether a particular treatment is futile. The term medical theater refers literally to the operating This approach has been adopted by the American room—the operating theater. More broadly, the term Medical Association’s Council on Ethical and Judicial is also used to refer to the places and practices that Affairs and has also been legislatively recognized. For surround demonstration as a method of dissemination 1066———Medical Theater of medical knowledge. By drawing attention to shows and films. In Flatliners (1990), for instance, the theatricality, the term medical theater brings into view resting green luminescent line of the heart monitor the different agendas and power positions that criss- signifying death becomes the central metaphor of the cross medical environments. film. Successful television shows such as CSI: Crime Medical practices are not fixed; they are subject to Scene Investigation offer a narrative of the anatomy historical changes, and they have not always been theater and dissection in stylish images, bright colors, aligned with issues of visibility. In Discipline and and clean arrangements. In CSI, the body on display is Punish, Michel Foucault (1977) describes the changes broken down, anatomized, atomized, into microsites in machinery and practices that influenced the hospi- of narratives. Bullets are tracked through flesh; a burst tal’s move from a place of thick walls and shelter, as a vein fills the screen, zoomed into by computer graph- place apart and out of public view, to a place charac- ics; skin appears under the microscope, dramatizing terized by a regime of visibility that allowed observa- the story that happened outside on the streets of Las tion of patients, complete with theatrical spaces Vegas anew in the confines of the medical theater and created specifically to allow doctors to view patients its laboratory stages. and to instruct trainees. This new regime of visibility Within this economy of the medical theater as med- allowed for physicians’ engagement with individual ical practice, the “ideal” body becomes the object of patients at the same time the patients themselves knowledge: The symptoms of the bodies on display became site—places within which and on which within this theater are interesting insofar as they shed symptoms could be observed. In the history of dis- light on the general body, the nonspecific body, the ability representations, psychologist Jean-Martin universal or “normal” body. Statistics set boundaries Charcot and his performances of hysteria in the and norms within which the body in the medical Salpêtrière in the 1870s can illustrate this point. theater is aligned. In some instances, these statistical Charcot investigated women diagnosed with hysteria, demands and their effect on aesthetics and “proper fainting attacks, or spontaneous paralyses, parading bodies” lead to strange acts: medical practices that them around his amphitheater. By presenting that these invade bodies, often of disabled people, in order to women were not consciously in control, that they were normalize. Thus, limbs are straightened or length- not faking their attacks, Charcot established the legiti- ened, often under excruciating pain; ears are reposi- macy of psychological conditions and their effects on tioned, fat sucked, breasts enhanced. the physical body. The price paid for this achievement, In art practices, the boundaries between the “dis- however, was the further disempowerment of these eased” and the “normal” can become unstable and can women, who became puppets with disheveled clothes be queried. The film Crash (1996), directed by David in a male-dominated theater of stares. Cronenberg, reconceptualizes the medical theater. In the The original medical theaters where dissections film, which is based on J. G. Ballard’s novel by the same were publicly performed were amphitheaters, archi- title, traffic accidents and the unhealed flesh of survivors tectural forms that echoed the Greek theater tradition. become eroticized. New alignments between metal and The architecture also echoed Greek concerns of the body, unnatural openings into previously “whole” bod- public sphere: knowledge circulated from the staging ies become the focus of the camera, identified with the area to the benches, and back—the patient’s body was central character’s desirous gaze. Within the medical the scene of the action, but not the action itself. setting, in the hospital bed—with its paraphernalia of The transformation of individual bodies into bandages, metal cages, and blinking instruments—sex “data,” or into forms of knowledge, is the economy is used as a counterpoint to death. The medical theater initiated in this theater. The individual patient here is the liminal space. But disability remains negative becomes a barrier breached, the patient’s life a collec- in this economy of eroticized wounded bodies; it is the tion of data: heartbeat, blood pressure, lines on com- fluidity of bodies that is valued, their ability to be puter monitors, relations of blood chemicals, lung wounded and to heal. For disability politics, the film capacity. These disembodied data as representations offers a different vision of fetishized flesh, but not a of a patient’s life are familiar from medical television pathway to a rethinking of disability as lived reality. Medicine———1067

The medical theater is not without an audience— photos might have been taken, and demonstrations Charcot’s pupils eagerly drank in the sight of their held over their mute, or even their protesting, bodies. powerful professor handling fainting women. In CSI, Traditionally, the diagnostic gaze of the medical detectives follow action with bated breath as the stage practitioner can roam freely across the displayed machinery of the medical theater distills “evidence” bodies of patients, and only rarely are its intrusive and out of the wounded and dead bodies. Historical stud- objectifying powers acknowledged in the everyday ies of anatomy practice discuss the growing public encounter. In disability culture’s revision of the med- attraction of these spectacles of medical display, and ical theater, the object of the gaze speaks back or sub- history of medicine scholars have excavated the verts the agency and power of the scrutinizing gaze. extravagant and (to modern sensibilities) strange prac- Performers such as Bob Flanagan, Mat Fraser, Angela tices surrounding medicine in the seventeenth and Ellsworth, Victoria Halford, Ron Athey, and Greg eighteenth centuries. For instance, Gonzalez-Crussi Walloch have used the encounters between doctors and (1995) describes the Bolognese amphitheater in the patients as well as the paraphernalia of the medical seventeenth century as a site of theatrical spectacle, environment as starting points for their explorations. decked out magnificently for the occasion. In these —Petra Kuppers rites of knowledge and bodies, the professors appeared in long crimson robes, flanked by assistants, See also Disability Culture. to take up a position on the stage next to the cadaver. In contemporary displays of the rites of the medical Further Readings theater, the clothing and procession are less extrava- Bronfen, Elisabeth. 1998. The Knotted Subject: Hysteria and Its gant, but TV series such as ER have educated the Discontents. Princeton, NJ: Princeton University Press. public to the less ponderous but still strictly followed Foucault, Michel. 1977. Discipline and Punish: The Birth of the Prison. fashions and practices of the medical theater today. Translated by Alan Sheridan. New York: Vintage. Gonzalez-Crussi, F. 1995. Suspended Animation: Six Essays on the Within disability history, the various dramatizations Preservation of Bodily Parts. San Diego, CA: Harvest Original. of the life of the “Elephant Man” hinge on the display Kuppers, Petra. 2003. Disability and Contemporary Performance: of John Merrick—first by the freak show and then Bodies on Edge. London: Routledge. by the medical establishment. Bernard Pomerance’s Pomerance, Bernard. 1979. The Elephant Man. New York: Grove. play The Elephant Man (1979) presents the problems Sandahl, Carrie. 2001. “Performing Metaphors: Aids, Disability, Contemporary Theatre Review of seeing beyond the roles of doctor and patient, of and Technology.” 11(3–4): 49–60. achieving human contact within the machineries of Thomson, Rosemarie Garland. 2001. “Seeing the Disabled: Visual hospitals, fund-raising, and differing class demands Rhetorics of Disability in Popular Photography.” and life paths. Pp. 335–374 in The New Disability History: American Disability culture has also embraced the medical Perspectives, edited by Paul Longmore and Lauri Umansky. theater as an important site of political artwork, criti- New York: New York University Press. cism, and revolt. Many of the skits and stand-up Websites comedy routines performed at disability arts cabarets include references to encounters between medical per- The Arts Catalyst (The Science Art Agency), http://www.art sonnel and disabled people in the medical theater. The scatalyst.org “Navigating the Body: A Visibility Project,” by Susan Harman, medical theater here becomes a performance form that http://queer-arts.org/y2gay/Navigate is highly aware of the power differentials, the “gen- res,” the stories and the predetermined performance scripts that surround the doctor-patient encounter. ᨘ MEDICINE Most disabled people have intimate knowledge of these visual and performative practices of the medical MODELS OF DISABILITY theater. In particular, if they have rare congenital impairments, they might have been required to In the medical and rehabilitation sciences, various undress in front of doctors and medical students; models of disability have been proposed. These 1068———Medicine models help in the conceptualization of the medical reduces occupational demands (for example, by aspects of disability and serve to guide research and allowing the person to work from home). Disability is educational efforts in rehabilitation medicine. In the not necessarily permanent; it can be reversed if its United States, the Institute of Medicine of the determinants can be altered. National Academy of Science and the National The elimination or treatment of factors that convert Institutes of Health make use of a model that defines a functional loss into a disability or an impairment the development of a disability as a four-step path into a functional loss may result directly from medical with three transitions. The process begins with the intervention that limits tissue damage (e.g., thrombol- pathophysiology of the condition—that is, the basic ysis in acute stroke) or replaces damaged tissue (e.g., disturbance at the level of molecules, cells, or tissues joint replacement surgery). The latter, for example, that results in clinical manifestations of disease. The eliminates pain and damaged tissue, restores joint presence of the disturbance itself may not result in integrity, and allows for physical therapy for the disability and in fact may not be manifested clinically restoration of muscle strength and endurance. Thus, all the time. Modern medical sciences have made the functional losses and impairments are eliminated significant advances in understanding disease at this or minimized. This illustrates that the current concep- level, as illustrated, for example, by research into the tual model of disability is dynamic, and we should not genetic basis of disease. assume that nothing can be done about the problem. When molecular and cellular alterations reach a In this context, it is important to highlight the role certain threshold, the person may develop impair- that assistive technology, used in centers for rehabili- ment—that is, the inability of a physiological or body tation medicine, can play in the conversion of a dis- system to perform the function for which it was ability to a functional loss or in reversing a functional designed. Thus, an impairment of the neuromuscular loss to the level of impairment. Assistive devices system may be manifested by muscle atrophy and include mobility aids, computers to enhance commu- weakness, and a loss of joint range of motion is a sign nication and cognitive functions, and memory aids of an impaired skeletal system. Along the same lines, that can replace biological or mental functions and diabetics who cannot control and regulate their blood at least partially restore activity and participation. sugar levels have impaired metabolic and endocrine For example, when a person with muscular dystrophy systems. When the impairment limits the person’s loses muscle mass and the ability to walk, he or she ability to perform basic functional activities, such as may use a wheelchair to participate in community climbing stairs, running, or jumping, a functional loss activities. In this case, the use of a device to assist in has occurred. Individuals need to be able to perform mobility replaces the functional loss and minimizes many functional tasks in order to be independent at the disability. home, perform the duties of a parent, work, and func- A more recent model of disability, favored by tion in society. If a functional loss is severe enough some authors and adopted by the World Health and limits the person’s ability to do such tasks, a dis- Organization, is also based on various levels or steps ability has developed. Obviously, disability cannot be but begins with the person as the central element. looked at from a medical or biological point of view This level is roughly equivalent to the level of patho- only. In this model, disability is the final outcome, physiology in the model described above. The person and it is defined not only by the biology of the disease depends on having biological, physical, and psycho- or injury but, more important, by the interaction between logical integrity to perform activities (a level roughly the biology and the environment surrounding the equivalent to the impairment and functional loss person as well as the demands of the social and occu- levels of the previously discussed model combined). pational activities of the person. In other words, an One example of the importance of activity for disabil- impairment or functional loss may not become a dis- ity is the beneficial effect of physical activity (e.g., ability if the environment facilitates the task at hand walking, running) on a variety of chronic diseases. (for example, by removing barriers to mobility) or Well-conducted studies have shown that the regular Medicine———1069 practice of physical activity or exercise is associated of the injury, and pulmonary diseases. Persons with with reduction in the incidence of heart disease, these conditions become regular users of the medical stroke, some types of cancer, diabetes, obesity, services available in their communities and develop depression, and other conditions. Further, regular relationships with health care providers. Another example exercise of moderate intensity reduces mortality from is the patient with peripheral vascular disease and many of these conditions in both men and women and, poor circulation who undergoes an amputation below more important, delays the development of disability the knee. Such a patient requires rehabilitation, by several years. including the use of an artificial limb, but also careful Finally, it is not enough for the person to be capa- medical monitoring of the condition of the nonampu- ble of being active; rather, the ultimate objective is for tated leg, because many such patients develop compli- the person to be a participant in his or her community cations during 5 to 10 years postamputation. and in society in general (i.e., for the individual to In any of these instances, various medical profes- interact with the environment in performing certain sionals with different areas of specialization evaluate tasks). Although there are important similarities the patient, establish a diagnosis, and initiate treat- between the two models, the latter model is less med- ment and rehabilitation. These are important encoun- ically oriented and is characterized by a more holistic, ters, because medical interventions represent one of participatory approach. the first opportunities to control or reverse the Independent of the model used, the important issue physical and psychological conditions that, if left is that, in the practice of medicine, we need to under- unattended, may lead to the development of a new dis- stand the factors, biological and otherwise, that con- ability or the worsening of an existing one. In addi- tribute to the development of disability. Medical and tion, these critical opportunities represent times when rehabilitative interventions must be based on this professional medicine can display shortcomings. knowledge and understanding. Many of these factors Although many medical specialists do not necessarily are not biological or medical, and therefore many recognize the fact, acute therapeutic interventions can interventions must include other aspects of health. alter significantly, either positively or negatively, the pathway to disability. In other words, limiting tissue THE INTERSECTION BETWEEN damage and disease activity in the early stages is the MEDICINE AND DISABILITY first step in the restoration of form and function. Medical professionals’ failure to recognize this princi- An analysis of the relationship between disability and ple has led to undesirable outcomes and been the medicine is relevant for several reasons. Most obvious source of much criticism of the medical model of is the fact that the road to disability often begins with disability. On the other hand, inappropriate medical an acute illness (e.g., a stroke), injury (e.g., traumatic interventions can also contribute to a problem by brain injury), or the development of symptoms and delaying tissue healing and by imposing unnecessary signs of a chronic illness (e.g., rheumatoid arthritis). restrictions on a patient’s activity and community par- In all of these situations, the affected person is likely ticipation. History reveals many instances in which to need the services of a medical professional. For medical interventions, although well-intentioned, did many young and healthy individuals, this could be more harm than good. In this context, one of the most their first experience as hospital patients. Further, noticeable weaknesses of the medical approach to dis- even those who have permanent but stable disabilities ability has been the failure to recognize the impor- are likely to require medical services at different tance of the environment as well as the psychosocial points in their lives. For example, disabling conditions forces that define disability. resulting from spinal cord injury (e.g., tetraplegia and Two factors that have contributed to an increase in paraplegia) are associated with a high incidence of the prevalence of disability in recent years are worthy such medical complications as infections of the uri- of attention. One of these is the success of the health care nary tract, pressure sores, osteoporosis below the level system in providing advanced medical interventions 1070———Medicine and using modern technology in acute settings. A change in paradigm is needed to place the person’s Advances in science and medicine have been published ability to participate in society at the forefront of med- at an unprecedented rate since the middle of the twen- ical interventions and to integrate the environment in tieth century. These developments have resulted in a the analysis of the health care and medical needs of reduction in mortality associated with accidents, patients. injuries, and acute and chronic illnesses. Paradoxically, the increase in survival rates, a positive outcome in and TEACHING MEDICAL STUDENTS of itself, may have contributed to an increase in the AND SPECIALISTS ABOUT DISABILITY incidence of disability, given that many patients now survive life-threatening injuries and diseases associated The changes mentioned above highlight the need for with permanent impairments and functional losses. a health care system that is knowledgeable about and This increased prevalence of disabling conditions accessible to persons with disabilities. Although many requires a change in our medical practice, better educa- medical specialties (e.g., developmental pediatrics, tional programs for medical students and residents geriatrics, neurology, neurosurgery, oncology, ortho- (postgraduate trainees), and novel research programs to pedics, and psychiatry) have developed an interest in generate new knowledge and successful interventions. disability, the only medical specialty that has included Some of these needs are not being met, and the medical disability as a central theme in its philosophy of care, profession must make an effort to fulfill them if it mission, educational and training programs, research intends to serve well an increasingly large segment of agenda, and clinical services is the specialty of the population. physical medicine and rehabilitation (PM&R, also The dramatic demographic changes registered dur- known as physical and rehabilitation medicine, reha- ing the late twentieth and early twenty-first centuries bilitation medicine, or physiatry). In fact, PM&R was have also contributed to an increase in the prevalence born, to a very significant extent, out of the needs of of disability. Increasing numbers of people survive to patients with permanent disabilities caused by war- advanced adult age, and life expectancy is signifi- related injuries, because the other medical specialties cantly longer today than in the past in all continents of available at the time did not offer effective therapeutic the world with the exception of Africa. The World alternatives after the acute stage. Health Organization has predicted that the aging of In the United States, physicians specializing in the world’s population will continue for the next PM&R (physiatrists) must complete four years of few decades, resulting in an increase in the number postgraduate residency training. They learn to evalu- of people in the older age groups, particularly those ate, treat, and rehabilitate people with disabilities older than 85, including centenarians. Further, the using a holistic approach and are trained to pay par- incidence of functional losses and disability increases ticular attention to the restoration of form, function, with advanced age in both men and women. This is and freedom to the patient. Thus, the specialty is in part due to age-related physiological losses but also defined by its comprehensive approach and interest to the increased incidence of chronic illness in the in function and not by the need to attend diseases of elderly. The elderly seek health care services more a specific organ or body system. Furthermore, in than do the members of any other age group, bringing addition to attending to the biological and physical to the attention of their physicians, primary care doc- needs of the patient, physiatrists place special tors, and specialists not only their medical needs but emphasis on psychosocial, emotional, and vocational also their functional limitations. Studies have shown issues that may be important determinants of the that the elderly fear functional dependence more than level of disability. It is interesting that the conse- death. This preference expressed by patients is a quent lack of identification with a specific organ or strong statement against the traditional medical body system (unlike the identification of cardiology approach of treating symptoms and diseases in isolation, with the heart and ophthalmology with the eye, for without considering their functional consequences. example) has made the process of communicating Medicine———1071 the nature of the specialty more difficult. For those rehabilitation. Financial concerns with the cost of without disabilities, the concept of function may not health care have forced acute care hospitals to reduce be all too obvious. the length of the hospitalization for many diseases and Unfortunately, the specialty of physical medicine surgical cases. To accomplish this goal, hospitals have and rehabilitation is not very popular among medical begun transferring patients to other, lower-cost, facil- students and is usually not included as part of the ities as soon as their medical conditions are stable regular curriculum in most medical schools. enough to permit continuation of their treatment and Furthermore, conceptualization of function and dis- recovery elsewhere. As a consequence, rehabilitation ability is poorly disseminated within the field of med- facilities have become important providers of suba- icine in general. Thus, standard medical textbooks cute medical and rehabilitative care much earlier in such as Harrison’s Principles of Internal Medicine the recovery (postinjury or postsurgery) process, and do not include disability in their indexes. More fre- physicians and administrators in acute care facilities quently, disability awareness comes from firsthand have been forced to learn more about the needs of experience. It is not unusual to find students whose people with conditions that require rehabilitation and interest in the specialty of PM&R resulted from their patients with disabilities, particularly in the early having lived with relatives with disabilities. Medical stages of episodes of care. students interested in the field have to use some of their elective time to do special rotations in physiatry in order to learn more about it. It could be argued that HEALTH CARE SERVICES this deficiency of information and knowledge about FOR PEOPLE WITH DISABILITIES disability and rehabilitation, characteristic of many medical school graduates, explains the lack of appre- Modern health care systems are multicomponent ciation and understanding that many physicians have organizations that integrate different levels of care in relation to disability issues. Further, more often across geographically separated campuses. Many than not, postgraduate residency training in many patients needing multiple levels of care are transferred medical specialties fails to provide students with prac- from one location to another, and then another, and so tical experiences in the diagnosis, treatment, and reha- on. Most of the services for people with disabilities bilitation of disabling conditions. Nevertheless, recent have been consolidated in entities known as nonacute, data indicate that, despite the above-mentioned limita- postacute, or continuing care health care systems. tions, the medical specialty of PM&R is growing in These systems have important distinguishing features many countries and regions of the world. Currently, that should be understood. there are approximately 8,000 board-certified physia- Acute medical services, including the acute hospi- trists in the United States and 15,000 physiatrists in tal, an emergency room, operating rooms, ancillary Europe. In addition, the numbers of medical graduates services such as radiology and clinical laboratory enrolled in PM&R residency training programs in the services, and outpatient clinics, are usually available United States and Europe are 1,200 and 2,000, respec- all on one campus. On the other hand, nonacute health tively. Greater availability of well-trained medical pro- care systems organized with the rehabilitation contin- fessionals could significantly enhance access to quality uum in mind may provide services on multiple cam- services focused on disability issues. puses, including the rehabilitation unit or hospital, Another opportunity to educate physicians and nursing homes, day hospitals, and outpatient clinics, other health care professionals has resulted from as well as in patients’ homes. Acute care facilities pro- recent changes in the financing and management of vide important services for people with disabilities. health care systems. These changes may have the The presence of a disability and the rehabilitation unintended consequence of enhancing the general needs of the patient are sometimes important determi- understanding of disability and rehabilitation issues nants of the nature and success of the intervention in among health care providers outside the world of the acute hospital, but most of the time they are not 1072———Medicine the center of attention. In the acute care hospital, more Two of the main objectives of the rehabilitation often than not, the need to restore form and function process are the return of the person to his or her home is a secondary consideration. The opposite is true in and, if possible, the return of the person to his or her the various levels and facilities of care that form part previous level of employment. To meet these objec- of the nonacute system. In the majority of cases, tives, medical professionals must develop a good people with disabilities access services in the nona- understanding of the social and occupational environ- cute system because of the disability, and the health ments of the patient. Such understanding may not be care professionals make the disability and its determi- necessary in acute care settings, but it is almost always nants the center of attention and clinical activity. The required in nonacute health care systems. For example, need to include the home of the patient as a compo- many of the rehabilitative and therapeutic interventions nent of the system is a formal recognition of its impor- may have to take into consideration the architecture and tant role in the final outcome. physical barriers of the patient’s house and the physical An important difference between a typical acute and psychological demands of the patient’s job. Again, medical intervention and treatment received in the disability is defined by the interaction between the bio- medical rehabilitation context is the emphasis that the logical and physical domains and the environment, and latter places on the interdisciplinary team. Although even in the case of static and permanent biological dys- recently many medical specialties have begun to functions, alterations in the environment can reduce develop and implement versions of the team concept, negative impacts on function and lessen the degree of medical care for people with disabilities in rehabilita- disability. In this context, it could be said that therapeu- tion settings has always been characterized by the tic and rehabilitative interventions should be directed interrelatedness of the interventions of a large group toward the environment: enhancing the person’s ability of health care professionals. The team approach is one to overcome environmental barriers or reducing the of the central tenets in the practice of clinical rehabil- magnitude of the barriers themselves. itation and the delivery of medical services for the dis- abled. In addition to the physician, the rehabilitation THE MEDICAL RESEARCH team may include individuals in all or some of the fol- AGENDA AND DISABILITY lowing health professions: occupational therapy, physical therapy, speech language pathology, psychol- Research is needed to generate new knowledge ogy, neuropsychology, recreational therapy, rehabili- that medical professionals could use to understand the tation nursing, nutrition, and social work. Fragmented natural world and apply to the solution of clinical medical care in which multiple specialists intervene problems. In medicine, new knowledge is generated with a patient without coordinating their services has through research studies that can be divided into three no place in rehabilitation medicine clinics and centers general categories: basic science research, clinical or in medical programs for the disabled. The coordi- research (including clinical trials and outcomes nation of services takes place not only through daily research), and health services research. communication among the members of the team The goal of basic medical science research is to but also through formal team meetings in which increase understanding of health and disease at the members discuss the goals and progress of the mechanistic level. Important basic science questions patient. In a very real sense, the patient and his or her address how the human body works and what happens family are also part of the team, and family meetings when a disease develops at the molecular and cellular are held to discuss the patient’s progress and to get levels. Many of these questions are relevant to a vari- family members’ opinions on issues confronting the ety of clinical issues and help us understand problems patient. Although some of these interactions and at a very fundamental level even though they do not activities take place also in the acute care setting, address or test immediate solutions to clinical issues. they are more formally planned and executed in the Clinical research, on the other hand, is designed rehabilitation setting. to test ideas with the potential to treat or cure disease Medicine———1073 in humans. Thus, researchers test drugs, new surgical pharmacological agents developed using this model interventions, and new technologies to assess their could be effective in treating medical complications value in preventing illness, treating disease, and alle- that are frequently seen in association with disabling viating pain and suffering. This type of research is conditions such as spasticity (a velocity-dependent unique in that it requires the voluntary participation of increase in muscle tone) in stroke survivors and human subjects. The patient or person with a disabil- tetraplegics. Advanced prosthetic (artificial limbs) and ity has an opportunity to be part of the process and orthotic (braces) devices for those with mobility contribute to a better outcome. The clinical research problems and amputations, which clearly benefit con- enterprise has a solid base in areas such as cardiovas- sumers, are developed and tested using this approach. cular disease and cancer but is not well developed in Finally, the organization of a system of care for rehabilitation medicine. Advances in the rehabilitation people with disabilities should take into consideration of people with disabilities will depend on the estab- the special needs of this population; therefore, health lishment of a clinical trials network, so that new treat- services research is needed to help define the charac- ments can be tested on large numbers of individuals. teristics of such a system. This concept has been Finally, health services research deals primarily tested in the Model Spinal Cord Injury System, a net- with issues related to the delivery of health care and work of centers in the United States dedicated to the the factors that determine the efficiency and effective- care of patients with spinal cord injuries. These cen- ness of health care systems. Current health services ters provide and coordinate emergency and acute delivery models may not be adequate for people with medical care, rehabilitation services, psychosocial disabilities, and more creative ways of providing and community reintegration programs, and long- services are needed. For example, new technologies term follow-up focusing on the special needs of such as tele-rehabilitation could help medical profes- patients after spinal cord injury. During the past 35 sionals to deliver services in patients’ homes and years, researchers have developed and tested each of reduce dependence on clinic and home visits. these levels of care and special programs with the In many ways, all of these types of research are needs of persons with spinal cord injury in mind. It is important for persons with disabilities because many worth noting that these centers must integrate not only of the treatments developed in the context of acute different levels of care (e.g., acute neurosurgical inter- care interventions might find application in rehabilita- ventions with rehabilitation goals) but also adminis- tion centers. For example, understanding the basic trative, research, and educational efforts for health events leading to brain damage after an injury or care professionals, patients, and patients’ families. stroke could help with the development of ways to In general, the medical research agenda does protect healthy tissue surrounding the affected area. not include enough research initiatives that have at Further, tissue engineering could potentially be used their centers the purpose of ameliorating disability. to replace tissue that has been damaged or lost due to Traditional medical research models used, for illness or injury, as in degenerative arthritis. Stem example, in acute care hospital settings are more ori- cells that have the capability to differentiate into dif- ented toward the biological and physical aspects of ferent types of cells represent another potential source disease. These are clearly important, but in the future, of “new tissue.” the roles of environmental and psychosocial factors Clearly, significant efforts in basic science are will have to be integrated with these two aspects. needed to accomplish these goals. Further, no discov- An example of this integration is the proposed future ery is incorporated in standard medical practice until agenda for the Model Spinal Cord Injury System, appropriate clinical trials have been conducted to which includes attempting to integrate basic science, prove the safety and effectiveness of treatment based clinical research, and health services research. This on the discovery. Therefore, clinical trials and out- agenda, with minor modifications, could serve as an comes research studies must also be part of the example for research agendas concerning other dis- research agenda addressing disability issues. New abling conditions. It has been proposed that the Model 1074———Melancholy

Spinal Cord Injury System centers conduct research 22(1). Retrieved April 20, 2005 (http://www.disabilityex- related to the following general areas: change.org/newsletter/article.php?n=18&a=98). Sung, Nancy S., William F. Crowley, Myron Genel, Patricia • Neuroscience and nerve regeneration Salber, Lewis Sandy, Louis M. Sherwood, et al. 2003. • Pharmacological interventions, including random- “Central Challenges Facing the National Clinical Research ized controlled clinical trials Enterprise.” Journal of the American Medical Association 289:1278–1287. • Biotechnology interface projects Tate, Denise G. and Martin Forchheimer. 2002. “Contributions • Preventive health and wellness • from the Model Systems Programs to Spinal Cord Injury Subjective well-being and consumer satisfaction Research.” Journal of Spinal Cord Medicine 25:316–330. • Bioethics Wang, Benjamin W. E., Dena R. Ramey, Jared D. Schettler, Helen • Health care models B. Hubert, and James F. Fries. 2002. “Postponed • Bioinformatics, collaborative patient, and research Development of Disability in Elderly Runners: A 13-Year databases Longitudinal Study.” Archives of Internal Medicine 162:2285–2294. This proposed new research agenda will take advantage of the dramatic advances in science recorded in the twentieth and twenty-first centuries ᨘ and apply this new knowledge to the enhancement MEDITATION of the quality of life of people with disabilities. See Mindfulness Meditation Disability should not be defined by medicine; instead, the medical profession should be considered an important partner capable of making a significant con- tribution to the understanding and transformation of ᨘ MELANCHOLY disability. —Walter R. Frontera The word melancholy, which refers to a state of low spirits, sadness, and anxiety, comes from the Greek See also Health; Health Care and Disability; Models; Professions. terms melas (black) and chole (bile). The historical meaning of the concept of melancholy has been super- Further Readings seded by modern terms such as depression; whereas Braddom, Randall L., ed. 2000. Physical Medicine and melancholy is now used to refer to a state of lingering Rehabilitation. Philadelphia: W. B. Saunders. sadness, from antiquity to the development of prepsy- Brandt, Edward N., Jr. and Andrew M. Pope, eds. 1997. Enabling chiatric medicine the term was used to describe a America. Washington, DC: National Academy Press. DeLisa, Joel A., ed. 1998. Rehabilitation Medicine. Philadelphia: medical condition. J. B. Lippincott. In antiquity, the word melancholy referred to a med- Frontera, Walter R. and Julie K. Silver, eds. 2002. Essentials of ical disturbance of the mind and the soul that was con- Physical Medicine and Rehabilitation. Philadelphia: Hanley trasted with other states of madness, such as mania, a & Belfus. chronic mental disorder without fever, and phrenitis, an Gritzer, Glenn and Arnold Arluke. 1985. The Making of inflammation of the brain with fever. The specificity of Rehabilitation: A Political Economy of Medical Specialization, 1890–1980. Berkeley: University of California melancholy was believed to be related to its cause in the Press. body: black bile. Like the three other bodily humors— Katz, Paul R., George T. Grossberg, Jane F. Potter, and David H. blood, yellow bile, and phlegm—black bile was under- Solomon. 2002. Geriatrics Syllabus for Specialists. stood to affect the body as well as the soul; in excess, it New York: American Geriatrics Society. was seen as the cause not only of melancholy but also Kirshblum, Steven C. 2002. “Clinical Activities of the Model of cancer, elephantiasis, and hemorrhoids. Spinal Cord Injury System.” Journal of Spinal Cord Medicine 25:339–344. The Hippocratic corpus mentions black bile, but Stravopoulos, Eva. 2001–2002. “Community Information melancholy is not prominent. One of the Aphorisms Network for Individuals with Disabilities.” Disability Issues (6.23) states that “if sadness and fear last for a long Mental Health———1075 time, the state is melancholic.” A treatise from the Further Readings Aristotelian tradition, Problem XXX, which connects Aretaeus of Cappadocia. 1856. “On the Causes and Signs of the melancholic state to exceptional men, was very Diseases.” In Aretaeus of Cappadocia, The Extant Works, influential. In the treatise On Black Bile, Galen focuses translated by F. Adams. London: Sydenham Society. on the physiological aspects of this humor. The Aristotle. 1937. Problems. Translated by W. S. Hett. Cambridge, twofold nature of black bile—that it is both necessary MA: Loeb Classical Library. Burton, Robert. 1989–2000. The Anatomy of Melancholy, edited to life and yet in excess so potent that it is able cause by T. C. Faulkner, N. K. Kiessling, and R. L. Blair. Oxford, anthrax, elephantiasis, and melancholy—is clear in UK: Oxford University Press. this text. The cure for melancholy aims at reducing Galen. 2000. “On Black Bile.” In Galen on Food and Diet, trans- black bile through purgation with white hellebore. lated by M. Grant. London: Routledge. Other authors show more doubts about the possibility Hippocrates. 1931. Aphorisms. Translated by W. H. S Jones. of a cure. Aretaeus of Cappadocia (1856) gives a vivid Cambridge, MA: Loeb Classical Library. Jackson, Stanley W. 1986. Melancholia and Depression. New account of persons suffering from melancholy: Haven, CT: Yale University Press. Klibansky, Raymond, Erwin Panofsky, and Fritz Saxl. 1964. And they also become peevish, dispirited, sleepless, Saturn and Melancholy: Studies in the History of Natural and start up from a disturbed sleep. Unreasonable Philosophy, Medicine, Religion and Art. London: Thomas fear also seizes them, if the disease tend to increase, Nelson & Sons. when their dreams are true, terrifying, and clear: for Pigeaud, Jackie. 1987. Folie et cures de la folie chez les médecins whatever, when awake, they have an aversion to, as de l’Antiquité gréco-romaine: la manie. Paris: Les Belles being an evil, rushes upon their visions in sleep. They Lettres. are prone to change their mind readily; to become Starobinski, Jean. 1960. Histoire du traitement de la mélancolie base, mean-spirited, illiberal, and in a little time, des origines à 1900. Basel, Switzerland: J. R. Geigy. perhaps, simple, extravagant, munificent, not from any virtue of the soul, but from the changeableness of the disease. But if the illness become more urgent, ᨘ hatred, avoidance of the haunts of men, vain lamenta- MENTAL HEALTH tions; they complain of life, and desire to die. (pp. 299–300) The concept of mental health has changed radically in the past decade. Mental health disabilities are no On the physical side, the skin of melancholics was longer perceived as chronic, disabling conditions; said to become green-black, and they were said to rather, they are seen as limitations in the quality of life have great appetites while remaining emaciated. of affected individuals. In some nations, public policy During the Middle Ages, the whole theory of the legislation—such as the Americans with Disabilities bodily humors was systematized, and the melancholic Act (ADA) of 1990—has favored this reconceptual- emerged as one of the four temperaments—that is, a ization of mental disability. type of person with characteristics, both physical and Despite these new perspectives in the understand- mental, determined by the melancholic humor. Robert ing of mental disabilities, some dilemmas still are Burton’s Anatomy of Melancholy, first published in observed in this matter. In some countries and sectors 1621, is emblematic for the Renaissance: The author of society, a disparity still exists between the percep- organizes the classical sources about melancholy tion and approaches to the management of chronic around scrutiny of himself. Although alternative ideas illnesses. In this regard, some chronic medical illnesses, concerning the treatment of melancholy were put for- such as diabetes and epilepsy, are treated intensively ward, the ancient theories were influential well into and acutely at every relapse; in contrast, this approach the nineteenth century. is not always afforded to certain chronic psychiatric —Anne-France Morand disorders, such as schizophrenia. This type of discrim- inatory practice is also observed among countries, See also Humors, Theory of. including the United States, where no parity exists 1076———Mental Health between medical/surgical illnesses and psychiatric United States, for instance, one in every two persons in illnesses with respect to medical insurance coverage. need of psychiatric treatment does not receive it, espe- This dilemma, of course, is related to stigma, fear, cially in inner-city and rural areas. This happens for and ignorance. It may not be the patient but society at several reasons; quality of care may be inadequate, diag- large that discriminates, fears unknown illness, and noses may sometimes be inaccurate, medication feels guilty of conditions that still are not well-known. dosages may be insufficient, or the length of treatment This is what has also happened in the past vis-à-vis may be too short. This circumstance is even worse with epilepsy, leprosy, plague, and other similar conditions. respect to ethnic and racial minority group members Incidentally, this situation is similar to the one in the U.S. population. Stigma is definitely still a barrier observed when people from different races, ethnicities, to psychiatric care as well as to quality of care. and cultures interface with people from the majority Unquestionably, societal stigma and shame concerning culture. In general, persons tend to be afraid of those mental illnesses lead to ostracism and discrimination who differ from them in religion, economic ideology, vis-à-vis mental patients. Patients sometimes internalize skin color, language, or culture. This type of phenom- this situation and thus develop low self-esteem and enon leads to fears, persecution, discrimination, hopelessness; suicide may even result. racism, oppression, and even wars in some instances. Despite these serious public policy dilemmas, the During the past two decades, major research past decade has also seen major psychosocial research advances have taken place in the field of psychiatry advances to complement the biological research, lead- and behavioral sciences, particularly with respect to ing to new approaches in rehabilitation of the mentally neurosciences and the management of mental illness. ill, particularly the chronic mentally ill, and to major As the public begins to conceptualize many major advances in the conceptualization and understanding mental illnesses as “brain diseases” instead of as the of current mental health disability management. These results of parenting problems or weak character, new principles in psychiatric rehabilitation have shed stigma is reduced. As new discoveries take place, new new light on methods of intervention and have led to and promising perspectives also evolve, thus leading new perspectives with respect to early intervention and to progress in the way that society perceives psychi- treatment of mental health disabilities. atric disorders at a worldwide level. A rehabilitation approach has recently been devel- Mental illness ranks first in causing disabilities oped in which the patient becomes the center focus among many industrialized nations, including Western of the rehabilitation process. In this context, all key European countries, Canada, and the United States. domains of the person’s life—that is, the physical, In this respect, mental illnesses currently cause more emotional, intellectual, social, and spiritual needs of disability than cancer and heart disease combined. the person—are addressed from a rehabilitation point Schizophrenia, bipolar disorders, and depression now of view. In a well-integrated manner, all these per- account for 25 percent of all medical disabilities across sonal dimensions are attended to from a rehabilitation major industrialized nations. This situation has major viewpoint, with priority given to the rehabilitative implications, not only from the point of view of pain expectations of the patient suffering from a given psy- and human suffering but from an economic viewpoint chiatric illness or condition. This rehabilitative as well. For instance, in 1999, the economic cost due approach is geared toward involving the patient to loss of productivity as a result of mental illnesses in actively in the entire rehabilitation process. Active the United States was $63 billion. In the United States, involvement also includes full patient empower- 5 to 7 percent of adults currently suffer from serious ment—that is, the patient is provided with full infor- mental disorders, and 5 to 9 percent of children suffer mation about the nature of the illness, its symptoms, from serious emotional disturbances that severely dis- its course, and potential sequelae. rupt their social, academic, and emotional functioning. In this context, hope becomes an inherent and This situation is currently producing major public essential aspect of the rehabilitation philosophy. Thus, policy dilemmas in many industrialized countries. In the the approach to the rehabilitation process becomes a Mental Health: Law and Policy———1077 core element with respect to the positive expectations Likewise, relapse is now perceived more as an expression of the patient and the outcome of his or her illness of an acute phase of the illness than as a manifestation management. The whole rehabilitation process cur- of a long-term disabling condition. rently focuses on maximizing the patient’s strengths, Research and educational efforts have resulted especially from a competence and skills point of view. in numerous clinical advances in recent years, but Therefore, skill development, enhancement, and train- further progress is still needed in this regard. ing are central to this new ideology. Additionally, it is urgent that society face the current The patient’s environment extends itself to accom- public policy dilemmas affecting mentally ill patients. modate the factors that play a role in the mental health Certainly, isolated state hospital facilities were not the disability; thus, “limitations” substitute for “handi- appropriate answer to the need to provide humane caps.” Full focus is given to the patient’s environment care for the mentally ill, but neither are the streets of as a potential resource element. Possible resources urban metropolises or the prison system. include people such as the patient’s family members —Pedro Ruiz and other persons in the environment, programs, services, and infrastructures that can play a positive See also Mental Health: Law and Policy; Mental Illness. role in the patient’s rehabilitation process. In this Further Readings regard, employers, coworkers, friends, religious insti- tutions (e.g., churches and synagogues), landlords, Bachrach, Leonora L. 1992. “Psychosocial Rehabilitation and American and community centers all become potential resources Psychiatry in the Long-Term Care of Patients.” Journal of Psychiatry 149:1455–1463. on behalf of the patient’s rehabilitative outcome. Littrell, Kimberly H. and Steven H. Littrell. 1998. “Issues in the Currently, vocational assessment of the patient Integration and Rehabilitation in Schizophrenia.” Psychiatric is seen not as a way of coping with the mental health Annals 28:371–377. disability but as a way of maximizing the patient’s Ruiz, Pedro. 1999. “The Conceptualization of Long-Term, opportunities in life; limitations in the patient’s quality Disabling Psychiatric Disorders.” Pp. 293–295 in Schizophrenia, of life supersede acceptance of handicaps caused by the Vol. 2, edited by M. Maj and N. Sartorius. New York: John Wiley. psychiatric illness or condition. Incentives for full reha- Wallace, Charles J., Robert P. Liberman, Alex Kopelowicz, and bilitation opportunities aimed at helping the patient Daniel Yaeger. 2001. “Psychiatric Rehabilitation.” return to full- or part-time employment becomes the Pp. 1093–1112 in Treatments of Psychiatric Disorders, goal rather than the occasional expectation. The patient Vol. 1, 3d ed., edited by G. O. Gabbard. Washington, DC: is offered full opportunities for maximum achievement American Psychiatric Press. World Health Report 2001: and enhancement of his or her quality of life. World Health Organization. 2001. Mental Health—New Understanding, New Hope. Geneva: During the past decade, two new concepts have World Health Organization. enlightened the rehabilitation process and the concep- tualization of mental health disability: the concepts of patient satisfaction and quality of life. Although patient satisfaction has been addressed previously on ᨘ MENTAL HEALTH: many occasions, only recently has it come to be con- LAW AND POLICY sidered a quality indicator in the assessment of treat- ment outcomes. Likewise, quality of life is currently Historically, severe mental illness has been merged accepted as the major component in treatment out- with global incapacity. From at least the time of classi- comes. In this context, a successful and appropriate cal Greece and Rome to the European Middle Ages, rehabilitation process has become an integral part of families were expected to control, house, and provide illness management. for those afflicted with severe mental illness or intel- The treatment of chronic psychiatric conditions lectual limitation, and the freedom of these individuals depends less on the management of symptoms than it was subject to whatever limitations were set by their does on the intensive management of acute phases. families. By the fifteenth century, however, in Western 1078———Mental Health: Law and Policy

Europe the “insane” were increasingly confined to clinical capacity to exercise his or her rights. Only specialized institutions, a movement that grew sub- disability severe enough to compromise such capacity stantially until the mid-twentieth century. Individuals could negate a person’s exercise of such rights. with severe mental illness might be incarcerated in such facilities indefinitely, but they were not necessar- ily stripped of their titles or property. However, it was GUARDIANSHIP generally held that during the period of “insanity”— The roots of guardianship of the estate of an incapaci- which might be lifelong—they could not exercise tated individual can be traced to classical times, as many of the rights of ordinary citizens, and (if they noted above. Over time, the concept of guardianship owned substantial property) guardians were appointed has evolved dramatically, so that in some cases to act in their stead. (One interesting distinction was guardianship of the person (for example, the power to made in thirteenth-century England, where the prop- make health care decisions) is distinguished from erty of those born severely mentally retarded— guardianship of property (sometimes also called con- “congenital fools”—instead reverted to the king.) servatorship). Guardianship may also be general (ple- Thus, those identified as severely mentally ill were nary), or it may be restricted to certain classes of considered unable—simply by virtue of being ill—to decisions, with the ward retaining decision-making enter into business contracts, execute wills, or other- power for others. The issue of incompetence and hence wise control their property. The laws of the Roman need of a substitute decision maker can be based on Catholic Church also dealt with issues such as the legal definition (de jure), for example, if the individual effect of “insanity” on the validity of matrimonial is a minor, regardless of cognitive status; in other cases, consent and whether an “insane” person could receive proceedings can be based on the finding of actual church sacraments. (de facto) incompetence. A ward’s status of incompetence Perhaps because of the lack of effective treatment can be reversed either through a change of legal status and the chronic nature of many severe psychiatric dis- (e.g., reaching the age of majority) or through the orders, questions of why and under what circum- ward’s prevailing in a “restoration” hearing. stances property and civil rights should be given up by There is still significant variability among jurisdic- the severely mentally ill were not seriously addressed tions in the basis for appointment of a guardian, but a until the mid-twentieth century. Prior to that time, shift appears to be taking place from simply equating there was little legal oversight of the treatment of those mental illness to need for guardianship to focused hospitalized for severe mental illness, and virtually all evaluation of the functions the individual can (or can- such patients were hospitalized at large, state-run insti- not) perform, with the determination based on the tutions. Beginning in the latter half of the 1950s and degree and kind of deficits identified. early 1960s, coincident with the “deinstitutionaliza- tion” of psychiatric patients and in the context of large- scale social changes that led to marked liberalization CIVIL COMMITMENT of civil rights for many groups, those identified as severely mentally ill were nonetheless recognized as The shift described above has played out in a number having the legal ability to exercise all the civil rights of areas of mental health law. The justification for civil (e.g., the right to vote, the right to not be subject to commitment has in large part moved away from a treatment without informed consent, the right to refuse parens patriae model, in which the sovereign, or the certain treatments) accorded other citizens in the state, is responsible for the well-being of citizens, much United States and several other countries. Thus, a con- as the father is responsible for his family (note the gen- ceptual and legal shift occurred, from status as psychi- der bias), and thus is empowered to force treatment on atric patient being sufficient to establish absence of those judged to be in need of it. This has been sup- legal competence to a more nuanced view that focused planted in large degree by a “police power” model, in evaluation is needed to determine if and to what degree which evidence of an individual’s danger to self (by mental illness might affect an individual’s specific self-injury or inability to provide basic necessities of Mental Health: Law and Policy———1079 life) or to others (by violent behavior) is required for For permission to be valid, the patient must be able to involuntary hospitalization. In other words, an earlier render informed consent. This concept has three com- model based on social norms of which behaviors were ponents: competence, sufficient information on which acceptable and which merited confinement and coerced to base a reasoned choice, and freedom from coercion. treatment has been superseded by a model in which Competence can be a purely legal distinction (see individual liberty, within very broad bounds, can be above); in such a case, the consent is obtained from abridged only when evidence exists of clear and signif- the patient’s parent or guardian. Competence can also icant risk of social disruption, such as threat to the be questioned based on, for example, the presence of physical safety of a citizen. Less severe behavioral mental illness. Again, however, mere presence of a problems, even when accompanied by suffering and mental disorder is insufficient to undermine the indi- risk of lesser degrees of harm (such as financial irre- vidual’s autonomy. Under such circumstances, the sponsibility or disruption of the family situation), are legal system may either make treatment decisions or insufficient to justify involuntary hospitalization. determine who should act in the patient’s stead. Indeed, physical freedom is considered so fundamental Specific tests differ among jurisdictions, but in gen- that in Addington v. Texas (1979), the U.S. Supreme eral to demonstrate incompetence one must show that Court held that “civil commitment for any purpose con- the individual’s reason for refusal of treatment is irra- stitutes a significant deprivation of liberty” and, hence, tional. If that is so, for most health care decisions a due process protections must be in place to ensure that substitute decision maker (often but not necessarily “the individual suffers from something more serious the patient’s spouse, parent, or other family member) than is demonstrated by idiosyncratic behavior” before may be employed. In some cases, the individual may his or her freedom can be abridged. Under such have previously executed a document spelling out circumstances, because the individual disproportionately what treatments he or she would wish (or refuse) in bears the cost of an erroneous determination, the state the event that he or she becomes severely ill. Although must prove the need for civil commitment at least to a such contracts may not in the end determine treat- standard of “clear and convincing evidence.” ment, they may be used as part of the fact base to Often associated with this deference to physical determine the individual’s wishes. liberty is the concept of “least restrictive alternative.” Involuntary treatment with psychotropic medica- First explicated in the case of Lake v. Cameron (1966), tion is often (by statute) handled differently from this principle dictates that an individual’s physical other interventions. In that case, the court (or other fact freedom should be restricted as little as possible finder) might use information such as the patient’s consistent with physical safety and that practitioners prior experience with the medication, the patient’s consider the full range of services available (such as perceptions of its purpose and effects currently, and outpatient treatment, partial hospital programs, nurs- the preferences regarding treatment previously ing homes) before mandating inpatient treatment, expressed by the patient. If the patient’s refusal of with precedence granted to the setting that interferes treatment is considered not to be competent, generally least with physical freedom consistent with safety. it must be further demonstrated that the proposed treatment’s benefits outweigh its risks and that the TREATMENT RIGHTS underlying condition is sufficiently grave as to merit treatment over the patient’s objections. Personal autonomy is considered a higher social good One seeming peculiarity in regulation of involun- than health. Disagreeing with medical advice is not tary psychiatric treatment is that many jurisdictions necessarily evidence of impaired judgment, and in now separate issues of involuntary hospitalization general, the patient is free to decline treatment even from issues of involuntary treatment. The presence when the treatment is necessary to prevent serious of a disorder, even one sufficient to cause an individual harm or death. Conversely, it is generally incumbent to behave dangerously, does not inherently establish on the treatment provider to obtain permission from that the person’s ability to make treatment choices is the patient (or the patient’s substitute decision maker). severely impaired, although this is in fact often the 1080———Mental Health: Law and Policy case. Commitment generally requires the presence competence to stand trial. The defendant’s mental sta- of a mental illness plus some evidence of dangerous tus at the time of trial must be such that the individual behavior, whereas involuntary treatment requires, in has “sufficient present ability to consult with his attor- essence, the individual’s lack of ability to make rea- ney with a reasonable degree of rational understand- soned treatment choices—two separate concepts that ing and a rational as well as factual understanding of may require two separate judicial determinations. proceedings against him” (Dusky v. United States It is interesting to note that there has been judicial 1960). reluctance to identify a corresponding “right to treat- In practice, therefore, competence to stand trial ment,” even for those involuntarily hospitalized has several components, and a number of instruments (O’Connor v. Donaldson 1975). Indeed, U.S. courts have been devised to aid clinicians in assessing them. have paid great deference to professional judgment, One major domain consists of knowledge of the rele- requiring only that the patient be provided safe condi- vant legal facts and procedures, such as the roles of tions, freedom from bodily restraint, and “training or courtroom personnel; awareness of legal protections, ‘habilitation’” (Youngberg v. Romeo 1982). such as right to counsel and protection against self- incrimination; the charges and their potential penal- ties; and potential legal strategies, such as an insanity OTHER COMPETENCIES defense or plea bargaining. Mental illness may potentially—but not necessarily— A second component is the ability of the defendant undermine a person’s ability to exercise specific abilities, to participate meaningfully in planning legal strategy. such as to validly enter into a contract, marry, write a This includes such functions as the ability to weigh will, or testify in court. The issue becomes whether alternative defenses and potential outcomes rationally, mental illness has negated some element specific to a the ability to collaborate with counsel regarding trial given function. For example, to execute a will compe- strategy, and the ability to challenge adverse witnesses tently, one must understand that one is making a will, realistically. Although the defendant’s ability to pro- understand the nature and extent of one’s property, vide counsel with a coherent accounting of the defen- and have knowledge and understanding of one’s heirs dant’s version of events is desirable, the courts have (“the objects of their bounty”). Great weight is placed held that amnesia for events does not equate with lack on the will, and generally a rather strict (“clear and of fitness to stand trial. convincing”) proof is required to invalidate it. A rather The last component of fitness or competence to similar analysis generally informs the judgment of stand trial is the degree to which the defendant is will- competence to contract; that is, the contractor must be ing and able to mount a strong defense, unimpaired by sufficiently aware of the contract’s elements and be the presence of mental illness that might, for example, able to make rational decisions based on them. make him or her plead guilty to a crime out of delu- sional guilt. Although a high standard of proof “beyond a reasonable doubt” is necessary for convic- CRIMINAL LAW tion of a crime, a lesser standard, “preponderance of Analogous to civil law, within the criminal law a evidence,” is sufficient to establish competence to number of kinds of competencies are noted specifi- stand trial. A similar standard is generally used to cally: competence to waive certain protections (e.g., determine other competencies relevant to criminal one’s rights under Miranda v. Arizona 1965) or law, as noted above. appeals, to enter a plea, to confess, to testify as a wit- ness, to represent oneself, and so forth. As with civil MENTAL HEALTH LAW, competencies, it is necessary to evaluate specifically DISABILITY, AND DISCRIMINATION the impact that mental illness might have on the legal tests, which may differ substantially from jurisdiction The current relationship between mental illness and to jurisdiction. Most fundamental is the issue of the definition of disability will not be discussed here; Mental Health Parity———1081 suffice it to say that it is a complex relationship that Further Readings may vary considerably depending on the legal context Addington v. Texas, 441 U.S. 418 (1979). in which the issue is raised. Dusky v. United States, 363 U.S. 402 (1960). Arguably, to date the most sweeping legislation Grisso, Thomas. 1986. Evaluating Competencies. New York: related to the rights of the disabled in the United Plenum. States is the Americans with Disabilities Act (ADA) Lake v. Cameron, 364 F.2d 657 (1966). Melton, Gary B., John Petrila, Norman G. Poythress, and of 1990. Many mental illnesses may be considered as Christopher Slobogin. 1997. Psychological Evaluations for disabilities under the act, primarily excepting disor- the Courts: A Handbook for Mental Health Professionals ders of impulse control, current substance use disor- and Lawyers, 2d ed. New York: Guilford. ders, and certain sexual disorders (paraphilias), as Miranda v. Arizona, 384 U.S. 436 (1965). well as homosexuality (which is not a mental disor- O’Connor v. Donaldson, 422 U.S. 563 (1975). der). To qualify as a disability, the disorder must sub- Olmstead v. L.C., 138 F.3d 893 (1999). Rosner, Richard, ed. 1994. Principles and Practice of Forensic stantially limit one or more of the individual’s major Psychiatry. New York: Chapman & Hall. life activities. Of note, the act states that the disability Youngberg v. Romeo, 457 U.S. 307, 102 S. Ct. 2452 (1982). so defined need not be current, as long as the individ- ual has “a record of such impairment; or...[is] Websites regarded as having such an impairment.” Title I of the ADA deals with issues of employment, American Bar Association, Commission on Mental and Physical Disability Law, http://www.abanet.org/disability Title II with public services, Title III with public accom- Bazelon Center for Mental Health Law, http://www.bazelon.org modations and services by private entities, and Title IV National Mental Health Association, http://www.nmha.org with access to telecommunications. Under Title I, the ADA specifies that a disabled individual (as defined above) who, “with or without reasonable accommoda- ᨘ MENTAL HEALTH PARITY tion, can perform the essential functions of the employ- ment position” comes under the ADA’s protection. The term mental health parity refers to the effort to Building on Title II, in the 1999 case Olmstead v. treat mental health financing on the same basis as L.C., the U.S. Supreme Court held that “states are financing for general health services. Under the con- required to provide community-based treatment for cept of mental health parity, health insurance and persons with mental disabilities when the State’s treat- health plan coverage for treatment of mental illness ment professionals determine that such placement is would be equal with coverage of treatment for all appropriate, the affected persons do not oppose such other illnesses, using the same terms and conditions. treatment, and the placement can be reasonably Mental illness would be recognized as an issue equal accommodated.” In that decision, the Court held in importance to physical illness. that “unjustified placement or retention of persons in Advocates for mental health parity, such as the institutions . . . constitutes a form of discrimination” National Alliance for the Mentally Ill (NAMI), believe that the ADA prohibits and philosophically appears that mental illnesses are real illnesses, that treatment to have been influenced by the “least restrictive works, and that there is no medical or economic justi- alternative” concept explicated in Lake v. Cameron. fication for health plans to apply different terms and However, the Court deferred to the states the decision conditions to the coverage of treatment for mental ill- as to what community resources might be appropriate, ness than they do to coverage of treatment for physical addressing only the issue of equitable provision of illness. existing services rather than what services ought to be President Bill Clinton signed the Mental Health available. Parity Act (P.L. 104-204) into law in 1996. With the —Stephen H. Dinwiddie leadership of Senators Pete Domenici (R-NM) and the late Paul Wellstone (D-MN), this law created a stan- See also Americans with Disabilities Act of 1990 (United States). dard of parity for annual and lifetime dollar limits. 1082———Mental Illness

The law applies to employers that offer mental health which society can advance the concept of comprehen- benefits but does not mandate such coverage. Mental sive health care. health advocates such as NAMI are concerned that the —Richard Huston Sewell law allows health insurers to employ cost-shifting mechanisms, such as adjusting limits on mental ill- ness inpatient days and outpatient visits, limiting Further Readings prescription drugs, raising patient copayments and National Alliance for the Mentally Ill. 2000, May 18. “Statement deductibles, and modifying the definition of medical of Jacqueline Shannon, President, NAMI Regarding Mental necessity. Health Parity for the Committee on Health, Education, Labor The U.S. General Accounting Office (GAO 2000) and Pensions.” U.S. Senate. Retrieved October 31, 2004 has found that lower limits for inpatient and outpatient (http://www.nami.org/Content/ContentGroups/Policy/Testim ony1/Statement_of_Jacqueline_Shannon_President_Nationa mental illness treatments have continued in spite of l_Alliance_for_the_Mentally_Ill_NAMI_Regarding.htm). the law, and, in some cases, insurers have actually ———. 2004, January. “Mental Health Insurance Parity.” expanded such measures to help keep costs down. Retrieved October 31, 2004 (http://www.nami.org/Content/ The law does, however, apply to fully insured state- ContentGroups/Policy/Issues_Spotlights/Mental_Illness_ regulated health plans and self-insured plans that are Insurance_Parity.htm). Mental Health Parity Act: exempt from state laws under the Employee U.S. General Accounting Office. 2000. Despite New Federal Standards, Mental Health Benefits Retirement Income Security Act (ERISA), which are Remain Limited (Publication No. GAO/HEHS-00-95). regulated by the U.S. Department of Labor. Existing Washington, DC: Government Printing Office. state parity laws are not preempted by the federal law. U.S. Public Health Service. 1999. “Mental Health: A Report of the That is, a state law requiring more comprehensive Surgeon General.” Retrieved October 31, 2004 (http://www coverage is not weakened by the federal law, nor does .mentalhealth.samhsa.gov/features/surgeongeneralreport/ the federal law preclude a state from enacting stronger chapter6/sec4.asp). parity legislation. The law includes a small-business exemption for firms with 50 or fewer employees and an increased cost exemption for employers that can ᨘ MENTAL ILLNESS demonstrate a rise in costs of one percent or more due to parity implementation. The GAO also found that 86 Mental illness is a contentious concept. Some argue percent of surveyed health plans are complying with that it is a pathophysiological condition that resides in the law. Noncompliance may be the result of a lack of the individual, whereas others assert that it is a set of effort on the part of state insurance commissioners, behaviors produced by and interpreted in the individ- the Centers for Medicare and Medicaid Policy, and ual’s physical, social, and cultural environment. The the Pension and Welfare Benefits Administration to public health viewpoint integrates these two positions. educate employers about the new law. For public health scholars and practitioners, mental Evidence shows that the effects of mental health par- illness is characterized by a set of conditions and ity laws on costs are minimal. By introducing managed behaviors that result from the interactions among the care or increasing its level, insurers can significantly individual, society, and the environment. limit or even reduce the costs of implementing mental From a medical perspective, mental and behavioral health parity. In plans that have not previously used disorders are understood as clinically significant con- managed care, introducing parity simultaneously with ditions characterized by alterations in thinking, mood managed care can result in an actual reduction in costs. (emotions), or behavior associated with personal dis- Given that recent studies have shown that parity tress and/or impaired functioning. Mental and behav- laws do not increase costs significantly, and given that ioral disorders are viewed not just as variations within extensive limits on mental health benefits can create the range of “normal,” but as clearly abnormal or major financial burdens for patients and their families, pathological phenomena. However, a single occur- mental health parity represents an important way in rence of abnormal behavior or a short period of Mental Illness———1083 changes in mood does not, of itself, signify the Advances made in recent decades have helped to presence of a mental or behavioral disorder. In order standardize clinical assessment and improve the relia- to be categorized as disorders, such abnormalities bility of diagnosis. Structured interview schedules, uni- must be sustained over specific periods (for example, form definitions of symptoms and signs, and standard two weeks for a depressive episode) or be recurring, diagnostic criteria have made it possible for practition- and they must result in some personal distress or ers to achieve a high degree of reliability and validity in impaired functioning in one or more areas of life. the diagnosis of mental disorders. Structured interview Mental and behavioral disorders are also character- schedules and diagnostic symptom/sign checklists allow ized by specific symptoms and signs, and they usually mental health professionals to collect information using follow a more or less predictable natural course, unless standard questions and precoded responses. The symp- interventions are made. Not all human distress is mental toms and signs have been defined in detail to allow for disorder. Individuals may be distressed because of per- uniform application. Finally, diagnostic criteria for dis- sonal or social circumstances, for instance; unless all the orders have been standardized internationally. Mental essential criteria for a particular disorder are satisfied, disorders can now be diagnosed as reliably and accu- such distress is not classified as a mental disorder. rately as most of the common physical disorders. Diverse ways of thinking and behaving across cultures can influence the ways in which mental PREVALENCE OF DISORDERS disorders manifest, but these ways of thinking and behaving are not, of themselves, indicative of disor- Mental and behavioral disorders are found in people ders. Thus, culturally determined normal variations of all regions, all countries, and all societies. They are must not be labeled mental disorders. Nor should present in women and men at all stages of the life social, religious, or political beliefs be taken as evi- course. They are present among the rich and the poor, dence of mental disorder. and among people living in both urban and rural areas. Two systems of classification of mental disorders Recent analyses conducted by the World Health are widely used for both clinical and research purposes. Organization (2001) found that neuropsychiatric The World Health Organization’s (1993) International conditions, which included a selection of these disorders, Classification of Disorders (ICD-10) categorizes both had an aggregate point prevalence of about 10 percent physical and mental health disorders. The American for adults. The WHO estimates that about 450 million Psychiatric Association’s (2004) Diagnostic and people suffer from neuropsychiatric conditions, includ- Statistical Manual of Mental Disorders presents a ing unipolar depressive disorders, bipolar affective disor- classification system used only for mental disorders. der, schizophrenia, epilepsy, alcohol and selected drug Medical professionals use these two coordinated classi- use disorders, Alzheimer’s and other dementias, post- fication systems to categorize mental disorders, based traumatic stress disorder, obsessive-compulsive disorder, on criteria sets with defining features, for diagnosis, panic disorder, and primary insomnia. treatment, research, and reimbursement purposes. Prevalence rates for the disorders examined differ depending on whether the focus is on a point in time DIAGNOSING DISORDERS (point prevalence), a period of time (period preva- lence), or the whole life of the individual (lifetime Practitioners identify and diagnose mental and behav- prevalence). Prevalence figures also vary based on the ioral disorders using clinical methods that are similar concepts and definitions of the disorders included in to those used for physical disorders. These methods the study. When all the disorders included in the ICD- include the careful and detailed collection of histori- 10 are considered, relatively high prevalence rates cal information from the individual and others, includ- have been reported. Surveys conducted in developed ing the individual’s family; a systematic clinical as well as developing countries have shown that more examination for mental status; and the administration than 25 percent of individuals develop one or more of specialized tests and investigations, as needed. mental or behavioral disorders in their lifetimes. 1084———Mental Illness

Most studies have found the overall prevalence of The dysfunction may be primary, as in diseases, mental disorders to be higher among women than among injuries, and insults that affect the brain directly and men. Much of this difference is accounted for by the effectively, or secondary, as in systematic diseases and differential distribution of disorders, however. Severe disorders that attack the brain only as one of the mul- mental disorders are about equally common among men tiple organs or systems of the body that are involved. and women, with the exceptions of depression, which is Dementia is a syndrome due to disease of the brain, more common among women, and substance use disor- usually of a chronic or progressive nature, in which ders, which are more common among men. there is disturbance of multiple higher cortical func- tions, including memory, thinking, orientation, com- prehension, calculation, learning capacity, language, CATEGORIES OF MENTAL DISORDERS and judgment. Consciousness is not clouded. The impairments of the cognitive function are commonly The ICD-10 lists 10 major categories of mental disor- accompanied, and occasionally preceded, by deterio- ders under Section F as follows: ration in emotional control, social behavior, or moti- F00–F09: Organic, including symptomatic, mental vation. This syndrome occurs in Alzheimer’s disease, disorders in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain. F10–F19: Mental and behavioral disorders due to psychoactive substance use F10–F19: Mental and Behavioral F20–F29: Schizophrenia, schizotypal and delusional Disorders Due to Psychoactive Substance Use disorders This category contains a wide variety of disorders F30–F39: Mood (affective) disorders that differ in severity and clinical form but are all F40–F49: Neurotic, stress-related, and somatoform attributable to the use of one or more psychoactive disorders substances, which may or may not have been medically F50–F59: Behavioral syndromes associated with prescribed. Identification of the psychoactive substance physiological disturbances and physical factors should be based on as many sources of information as F60–F69: Disorders of adult personality and behavior possible. These include self-report data, analysis of blood and other body fluids, characteristic physical F70–F79: Mental retardation and psychological symptoms, clinical signs and F80–F89: Disorders of psychological development behavior, and other evidence, such as a drug being in the patient’s possession or reports from informed third F90–F99: Behavioral and emotional disorders with onset usually occurring in childhood and adolescence parties. Many drug users take more than one type of psychoactive substance. The main diagnosis should The ICD-10 provides clinical descriptions and diag- be classified, whenever possible, according to the sub- nostic guidelines for all of these diagnostic categories. stance or class of substance that has caused or con- Some of the most important clinical categories are tributed most to the presenting clinical syndrome. described below (these descriptions are based on those provided in World Health Organization 1993). F20–F29: Schizophrenia, Schizotypal and Delusional Disorders F00–F09: Organic, Including This category brings together schizophrenia (the Symptomatic, Mental Disorders most important member of the group), schizotypal This category comprises a range of mental disorders disorder, persistent delusional disorders, and a larger grouped together on the basis of their having in com- group of acute transient psychotic disorders. Schizo- mon a demonstrable etiology in cerebral disease, brain affective disorders are included here in spite of their injury, or other insult leading to cerebral dysfunction. controversial nature. Mental Illness——1085

F20: Schizophrenia and attention, reduced self-esteem and self-confidence, ideas of guilt and unworthiness, black and pessimistic The schizophrenic disorders are characterized in view of the future, ideas or acts of self-harm or suicide, general by fundamental and characteristic distortions disturbed sleep, and diminished appetite. of thinking and perception, and by affects that are A depressive episode may also be diagnosed when inappropriate or blunted. Clear consciousness and a chronic depression of mood lasts at least several intellectual capacity are usually maintained, although years but is not sufficiently severe, or does not include certain cognitive deficits may evolve over the course sufficiently prolonged individual episodes, to justify a of time. The most important pathological phenomena diagnosis of severe, moderate, or mild recurrent include thought echo, thought insertion or with- depressive disorder. drawal, thought broadcasting, delusional perception and delusions control, influence or passivity, halluci- natory voices commenting on or discussing the F40–F49: Neurotic, Stress-Related, patient in the third person, thought disorders, and and Somatoform Disorders negative symptoms. When nervousness, anxiety, and depression are persistently or episodically combined with irrational F30–F39: Mood (Affective) Disorders fears, obsessive thoughts, fatigue, and a number of This category contains disorders in which the fun- different somatic disturbances for which no cause can damental disturbance is a change in affect or mood to be found, the condition is called neurosis. Stress- depression (with or without associated anxiety) or to related disorders are characterized by the development elation. The mood change is usually accompanied by of anxiety, dissociation, and other symptoms that occur a change in overall level of activity; most of the other within one month after exposure to an extremely trau- symptoms are either secondary to or easily understood matic stressor, such as death of a parent or spouse, loss in the context of the change in mood and activity. of a job, or diagnosis of a life-threatening illness. The Most of these disorders tend to be recurrent, and the common element in somatoform disorders is the pres- onset of individual symptoms can often be related to ence of physical symptoms that suggest a medical prob- stressful events or situations. lem when, in fact, these symptoms are not explained by a general medical condition, the direct effects of sub- stance use, or another mental disorder. An example is F30: Manic Episode hypochondriasis (the preoccupation with the fear of The underlying characteristics of this disorder are having a serious disease based on the misinterpretation elevated mood and an increase in the quantity and of one’s bodily symptoms or functions). speed of physical and mental activity. Elation is accompanied by increased energy, resulting in overac- F42: Obsessive-Compulsive Disorder tivity, pressure of speech, and a decreased need for The essential feature of obsessive-compulsive disor- sleep. Normal social inhibitions are lost, attention der is the recurrence of obsessional thoughts or com- cannot be sustained, and there is often marked dis- pulsive acts. Obsessional thoughts are ideas, images, tractibility. Self-esteem is inflated and grandiose, and or impulses that enter the patient’s mind again and overly optimistic ideas are freely expressed. again in a stereotyped form. They are almost invariably distressing, and the patient often tries, unsuccessfully, F32: Depressive Episode to resist them. The patient does, however, recognize The individual usually suffers from depressed mood, them as his or her own thoughts, even though they are loss of interest and enjoyment, and reduced energy involuntary and often repugnant. Compulsive acts or leading to increased fatigability and diminished activ- rituals are stereotyped behaviors that are repeated ity. Marked tiredness after only slight effort is common. again and again. They are not inherently enjoyable, nor Other common symptoms are reduced concentration do they result in the completion of inherently useful 1086———Mental Illness tasks. Usually the patient recognizes this behavior as the threshold for the development of PTSD or aggravate pointless or ineffectual and makes repeated attempts to its course. Typical features include episodes of repeated resist performing the behavior. reliving of trauma in intrusive memories (“flashbacks”), dreams, or nightmares occurring against a persisting background of a sense of “numbness” and emotional F43: Reaction to Severe Stress, and Adjustment Disorders blunting, detachment from other people, unresponsive- ness to surroundings, anhedonia, and avoidance of This category includes disorders identifiable not activities and situations reminiscent of the trauma. only on the basis of symptoms and course but also There is usually a state of automatic hyperarousal through the existence of one or the other of two causative with hypervigilance, an enhanced startle reaction, and influences: an exceptionally stressful life event produc- insomnia. The onset follows the trauma with a latency ing an acute stress reaction or a significant change lead- period that may range from a few weeks to months. ing to continued unpleasant circumstances that result in The course fluctuates, but recovery can be expected in an adjustment disorder. The stressful events or the con- the majority of cases. In a small proportion of cases the tinuing unpleasant circumstances are the primary and condition may follow a chronic course over many overriding causal factor; the disorder would not have years, with eventual transition to an enduring person- occurred without their impact. ality change.

F43.0: Acute Stress Reaction F48.0: Neurasthenia An acute stress reaction is a transient disorder that develops in an individual without any other apparent Considerable cultural variations occur in the pre- mental disorder in response to exceptional physical sentation of neurasthenia, and two main types occur, and mental stress and that usually subsides within with substantial overlap. In one type, the main feature hours or days. Individual vulnerability and coping is a complaint of increased fatigue after mental effort, capacity play roles in the occurrence and severity of often associated with some decrease in occupational acute stress reactions. The symptoms typically show a performance or coping efficiency in daily tasks. mixed and changing picture and include an initial The mental fatigability is typically described as an state of “daze” with some constriction of the field of unpleasant intrusion of distracting associations or consciousness and narrowing of attention, inability recollections, difficulty in concentrating, and generally to comprehend stimuli, and disorientation. Autonomic inefficient thinking. In the other type, the emphasis signs or panic anxiety (tachycardia, sweating, flush- is on feelings of bodily and physical weakness and ing) are commonly present. The symptoms usually exhaustion after only minimal effort, accompanied appear within minutes of the impact of the stressful by a feeling of muscular aches and pains and inability stimulus or event and disappear within two to three to relax. In both types, several other unpleasant physi- days (often within hours). Partial or complete amnesia cal feelings are common, including dizziness, tension for the episode may be present. headaches, and feelings of general instability. Worry about decreasing mental and bodily well-being, irri- tability, anhedonia, and varying minor degrees of both F43.1: Posttraumatic Stress Disorder depression and anxiety are all common. Posttraumatic stress disorder (PTSD) arises as a delayed or protracted response to a stressful event or situation (of either brief or long duration) of an excep- F50–F59: Behavioral Syndromes Associated with tionally threatening or catastrophic nature that is Physiological Disturbances and Physical Factors likely to cause pervasive distress in almost anyone. This category encompasses behavioral problems Predisposing factors, such as particular personality that are related to physiological factors, such as sleep traits or previous history of neurotic illness, may lower and sexual disorders. Sleep disorders include insomnia, Mental Illness———1087 substance-induced problems with sleep, sleepwalking, retardation, but the diagnosis also depends on the breathing-related sleep disorders, and circadian rhythm overall assessment of intellectual functioning by a skilled disorders. Sexual problems such as pain during inter- diagnostician. Intellectual abilities and social adapta- course, aversion to sexual activity, premature ejacula- tion may change over time, and even an individual with tion, male erectile dysfunction, and lack of sexual very poor abilities may improve as a result of training desire are examples of disorders that often have phys- and rehabilitation. Diagnosis should be based on the iological components. individual’s current level of functioning.

F60–F69: Disorders of Adult F80–F89: Disorders of Psychological Development Personality and Behavior The disorders included in this category have three This category includes a variety of conditions and things in common: (a) onset invariably during infancy behavior patterns of clinical significance that tend to or childhood, (b) impairment or delay in development be persistent and appear to be expressions of the indi- of functions that are strongly related to biological vidual’s characteristic lifestyle and mode of relating to maturation of the central nervous system, and (c) a him- or herself and others. Some of these conditions steady course without remissions and relapses. In and patterns of behavior emerge early in the course of most cases, the functions affected include language, development as a result of both constitutional factors visuospatial skills, and motor coordination. Usually and social experience, whereas others are acquired the delay or impairment has been present from as later in life. Specific personality disorders, mixed per- early as it could be detected reliably and will diminish sonality disorders, and enduring personality changes progressively as the child grows older, although milder are deeply ingrained and enduring behavior patterns deficits often remain in adult life. that manifest as inflexible responses to a broad range of personal and social situations. They represent F90–F99: Behavioral and Emotional extreme or significant deviations from the way in Disorders with Onset Usually which the average individual in a given culture per- Occurring in Childhood and Adolescence ceives, thinks, feels, and (particularly) relates to others. Such behavior patterns tend to be stable and often F90: Hyperkinetic Disorders encompass multiple domains of behavior and psy- Hyperkinetic disorders are characterized by early chological functioning. They are frequently, but not onset (usually in the first years of life), lack of persistence always, associated with various degrees of subjective in activities that require cognitive involvement, and a distress and problems of social performance. tendency to move from one activity to another without completing any one, together with disorganized, F70–F79: Mental Retardation ill-regulated, and excessive activity. Hyperkinetic Mental retardation is a condition of arrested or children are often reckless, impulsive, and prone to incomplete development of the mind that is especially accidents, and they frequently find themselves in characterized by impairment of skills manifested dur- disciplinary trouble because of unthinking breaches of ing the development period, skills that contribute to the rules rather than deliberate defiance. Their relation- overall level of intelligence (i.e., cognitive, language, ships with adults are often socially disinhibited, with motor, and social abilities). Retardation can occur with a lack of normal caution and reserve. They are unpop- or without mental or physical condition. Degrees of ular with other children and may become isolated. mental retardation are conventionally estimated Impairment of cognitive functions is common in such through the use of standardized intelligence tests. These children, and specific delays in motor and language can be supplemented by scales designed to assess social development are disproportionately frequent. Secondary adaptation in given environments. These measures pro- complications include dissocial behavior and low vide an approximate indication of the degree of mental self-esteem. 1088———Mental Retardation, History of

F91: Conduct Disorders psychological dysfunctions whose overt symptoms are shaped by cultural as well as natural processes. Finally, Conduct disorders are characterized by repetitive mental illnesses refer to whatever conditions a particu- and persistent patterns of dissocial, aggressive, or lar group defines as such. In contrast to the concepts of defiant conduct. Such behavior amounts to major “mental disease” and “mental disorder” which have violations of age-appropriate social expectations; it is valid and invalid applications, the concept of “mental more severe than ordinary childish mischief or ado- illness” refers to the actual labelling process in any lescent rebelliousness and is of an enduring nature group and so cannot be true or false. (p. 15) (six months or longer). Features of conduct disorder —R. Srinivasa Murthy can also be symptomatic of other psychiatric condi- tions, in which case the underlying diagnosis should See also Behavioral Disorders; Bipolar Disorder; Depression; be preferred. Madness and Mental Distress; Normality; Schizoaffective Disorders; Schizophrenia; Stigma.

THE CONTEXT OF MENTAL ILLNESS Further Readings American Psychiatric Association. 2000. Diagnostic and The preceding discussion has summarized the psy- Statistical Manual of Mental Disorders, 4th ed., text revision. chiatric/medical approach to and classification of Washington, DC: American Psychiatric Association. mental illness. In contrast to this approach, a growing Aneshensel, Carol S. and Jo C. Phelan. 1999. “The Sociology of literature in the social and behavioral sciences argues Mental Health: Surveying the Field.” Pp. 3–17 in Handbook of as follows: the Sociology of Mental Health, edited by Carol S. Aneshensel and Jo C. Phelan. New York: Kluwer Academic/ Plenum. 1. Mental illness is a term that refers to a broad Horwitz, Allan V. 2002. Creating Mental Illness. Chicago: range of conditions and behaviours. For this rea- University of Chicago Press. Jodelet, Denise. 1991. Madness and Social Representations. son, the concept of mental illness is too amor- Berkeley: University of California Press. phous to be useful except as a way of speaking World Health Organization. 1993. The ICD-10 Classification of about the aggregate subject matter of psychiatry. Mental and Behavioural Disorders: Diagnostic Criteria for 2. The attribution of madness to aberrant thoughts, Research. Geneva: World Health Organization. feelings and behaviours is not inherent to the ———. 2001. World Health Report 2001: Mental Health—New condition but is rather contingent on the social Understanding, New Hope. Geneva: World Health Organization. and cultural context within which these thoughts, feelings and behaviours occur. 3. The attribution of madness depends not only on ᨘ MENTAL RETARDATION, the setting but also on the person’s personal and demographic characteristics such as race, ethnic- HISTORY OF ity, poverty, age and sexual identity which accen- From ancient superstition to modern science, from tuate or ameliorate the process of stigmatization. old to modern empires, the history of intellectual dis- (Aneshensel and Phelan 1999:5–6) ability is largely one of expanded possibilities rather Based on these arguments, scholars are paying than total change. Stigma, exclusion, invisibility, aban- increased attention to the study of behaviors and “nor- donment, impoverishment, even systematic extermina- mality” within specific groups and social and cultural tion of intellectually disabled children and adults persist contexts. In sum, these arguments have led Horwitz today as they have throughout history. At the same time, (2002) to the following definitions: acceptance, visibility, inclusion, support, and self- advocacy have also become increasingly available to at Mental diseases are conditions where symptoms indi- least some of those same individuals. Simultaneously, cate underlying dysfunctions, are distinct from other one can find in the current circumstances of intellectu- disease conditions, and have certain universal features. ally disabled people the echoes of the worst atrocities Mental disorders include all mental diseases as well as and best achievements that history has to offer. Mental Retardation, History of———1089

Like most forms of disability, intellectual disability cases, that recognition was harsh and violent. Early has gone under many names. At various times, and in laws in ancient Greece and Rome, for example, estab- various countries, people judged to have some type lished procedures for the killing or abandonment of of difficulty with learning and abstract thought have infants judged to be too deformed or intellectually dis- been called fools, natural fools, idiots, cretins, aments, abled to be valued as human. At the same time, how- simpletons, imbeciles, and morons; they have been ever, scholars also point to evidence of early nomadic described also as fatuous, feebleminded, mentally tribes who continued to transport members of their defective, mentally retarded, learning disabled, and clans even when they had congenital physical and developmentally disabled. The question arises as to intellectual disabilities (Goodey 1995; Scheerenberger whether there is something stable, something physio- 1983). There is also evidence that in the Greek and logically persistent, behind those terms and the histor- Roman societies some of those with intellectual—and ical contexts within which their usage arose and other—disabilities who survived into adulthood declined. Regardless of how one answers that ques- became servants or slaves in the households of the rul- tion, the need for a history of intellectual disability ing classes, where they were relatively well cared for that recognizes the complexity of interaction between compared with the majority of the poor and oppressed the name and the thing being named is clear. (Rose 2003). The Roman philosopher Seneca com- The history of intellectual disability, then, should plained, for example, about the blind and fatuous include the evolution of both the concept itself and the servant his wife kept at home even as the woman’s narrative of those to whom the concept has been impairments became more severe. Indeed, anthropo- applied. To use a term that is now avoided but was logical evidence from non-Western cultures suggests once the professional term of choice in the English- that the treatment of intellectually disabled people in speaking world, the history of “idiocy” (i.e., the use of preliterate societies was probably tremendously var- the term) is different from the history of idiocy. Until ied. As one of the anthropologists who first focused on recently, however, the historiography of intellectual the evidence has put it, “Nothing can be more certain disability has emphasized the conceptual development than the conclusion that how the mentally retarded are and programmatic innovations over the daily lives of seen and responded to in the non-Western world is a those with the disability. As one historian has put it, complex and variable matter” (Edgerton 1970:537). the “social marginality” of people with intellectual Throughout the Middle Ages in Europe, this variety disabilities has, until recently, been carried over into persisted. At the same time, as disabled beggars an “academic marginality” where historians seemed wandered from town to town, free but unsupported, to feel that people who could not learn were also not church-related hospitals developed that provided both worth learning about (Digby 1996:1). In part, this sanctuary and care to intellectually disabled individu- simply reflects the evidence that is available. For the als abandoned by their families. While infanticide premodern eras, for example, we have much more evi- continued to receive religious tolerance, if not sanc- dence about the conceptual developments than about tion, the court jester tradition also placed great value what life was like for intellectually disabled people on having natural fools always present and cared for, and their families. In general, we know more about but without any real location within the social hierar- what philosophers and politicians of a given era and chy—constant outsiders. One historian of the period culture proposed for definitions and policies than we notes that the custom of keeping a natural fool was so do about the quotidian reality of those covered by the popular in Germany that by the early sixteenth cen- definition and affected by the policies. tury, “one finds them in the household of almost any rich and powerful family” (Midelfort 1999:248). For PREMODERN ERAS the most part, both intellectual and physical disability were seen in the Middle Ages as part of the “hodge- What sparse evidence there is supports the notion that podge of normality” that made up everyday society. intellectually disabled people have been recognized “There was an acceptance, at times awkward, at times as part of societies from the earliest times. In many brutal, at times compassionate, a kind of indifferent, 1090———Mental Retardation, History of fatalistic integration, without ideology but also without elaborate, with growing emphasis on close clinical confrontation” (Stiker 1999:65). observation and physiological examination. The offi- By the thirteenth and fourteenth centuries, legal cial social response gradually moved on the one hand distinctions began to appear between lunacy and from the custodial to the therapeutic and on the other idiocy. The idiot (or “natural fool”) was someone hand from tolerant neglect to aggressive confinement. incapable of abstract thought from birth, whereas the Perhaps the most famous and influential “experi- lunatic became deranged sometime after birth. Still, ment” in the development of this new psychological even with these new distinctions, the conceptual evo- training occurred in France at the very beginning of lution of terms and explanations for intellectual dis- the nineteenth century. When a strange, uncivilized ability are much less varied than was the actual boy was captured in southern France (the so-called treatment of people with that impairment. Consis- Wild Boy of Aveyron), a young doctor, Jean Marc tently, from Plato to Locke, the effort was to label and Gaspard Itard, undertook to teach this “noble savage” exclude those who were visibly and congenitally dif- using the careful training of the senses consistent with ferent. Whether seen as a joke or punishment of the the radical empiricism of Condillac and other French gods or a materialistic imbalance of the bodily humors, philosophers. Although Itard ultimately regarded his the birth of a child with noticeable disabilities gave experiment as a failure, because of the lack of suffi- permission—even responsibility—to dispose of that cient progress by the boy he named Victor, others took which was something other than fully human. over his methods and achievements to proclaim a new However, early on, the focus was on visible difference. therapeutic regime that gave hope for the remediation The changeling, for example, was the visibly disabled or cure of at least some types of idiocy. Throughout child of nondisabled parents. The terms of reference the remainder of the nineteenth century, there was a were many and confusing. rapid spread of specialized idiot asylums in both It is with the empiricism of John Locke, however, Europe and North America led by a new professional that the understanding of idiocy moved from a primar- class of institutional psychologists who made claims ily visible difference associated with congenital anom- of cure or dramatic improvement through early and alies to include those who looked “normal” but lacked intensive instruction and regimentation. People such the capacity for abstract or “natural” reason. The as Samuel Howe and Edouard Séguin in the United expansion was important and laid the conceptual States, Johann Guggenbühl in Switzerland, Carl groundwork for the subsequent emergence of a new Saegert in Germany, and William Ireland and John social response based in diagnostic expertise and ther- Langdon Down in England began congregate residen- apeutic efficacy. If idiocy was not always apparent or tial facilities for the education and training of intellec- visibly monstrous, then identification through testing tually disabled children and young adults. and intervention through training became vital for both By the last quarter of the nineteenth century, this the protection of society and the remediation of the wave of optimism had subsided but the institutions individual. continued to expand. Even with this rise of institu- tions, most individuals with intellectual disabilities THE MODERN ERA remained the responsibility of their families or the communities where they lived. Outside the walls of As it did with other areas of human endeavor, the the new institutions, intellectual disability remained Enlightenment brought a wave of scientific interven- primarily an economic problem of poverty and tionism and governmental reform to the social aware- dependence. With the progress of industrial urbaniza- ness of intellectual disability. The emerging field of tion and the need for a stable workforce, unemploy- psychology built on the newly empirical approaches to able intellectually disabled people were also the mental as well as the physical to make optimistic portrayed as a social problem: the source of the crime claims of precise identification and gradual improve- and degeneracy that was seen as a growing threat to ment. Classification typologies became increasingly the commonweal. Mental Retardation, History of———1091

THE TWENTIETH CENTURY programs and family support. By 1970, the institu- tional growth in the United States had crested at just For much of the twentieth century, emphasis remained under 200,000 individuals. Buttressed by journalistic on classification and control of the intellectually exposés and lawsuits documenting patterns of institu- disabled rather than on education and support. Early in tional abuse and neglect, a slow trend called deinstitu- the century, the intelligence test developed by Alfred tionalization began to move intellectually disabled Binet for the Paris schools was rapidly put to use in the people from institutions to the community. Individuals United States in schools and other institutions. Here with intellectual disabilities themselves began to orga- finally was an operational application of Locke’s defin- nize self-advocacy groups protesting discrimination ition. What came to be called IQ (or intelligence and exclusion. Programs to support the integration of quotient) tests were efficient, supposedly objective intellectually disabled children and adults in home, instruments that could identify those children who were school, workplace, and community became the offi- intellectually inferior even when their physical appear- cial policy in most countries in Western Europe and ance was “normal” and their intellectual inferiority mild. North America. Still, by the end of the twentieth So precise were these new tests that a new level of mild century, thousands of individuals were still living in feeblemindedness could now be identified. The psy- large, segregated facilities. In the latest terminological chologist Henry H. Goddard coined the term moron change, intellectual disability has begun to replace to refer to these individuals, who were said to have a mental retardation (in the United States) and learning mental age between 7 and 12 years. Feeblemindedness disability (in Great Britain) as the term of choice. became the generic term in the United States for all —Philip M. Ferguson types and levels of intellectual disability. The rapid adoption of the IQ test not only made the See also Alfred Binet; Down Syndrome; Henry Herbert Goddard; placement of students into the newly emerging special Johan Jacob Guggenbühl; IQ; Edouard Onesimus Séguin. education classes efficient and “scientific,” it also sup- plied more than enough evidence for eugenicists to Further Readings bemoan the growing “burden of the feebleminded” as Digby, Anne. 1996. “Contexts and Perspectives.” Pp. 1–21 in a plague on modern civilization in both moral and From Idiocy to Mental Deficiency: Historical Perspectives on economic terms. The new field of psychometrics People with Learning Disabilities, edited by David Wright combined with the new obsession with the scientific and Anne Digby. New York: Routledge. study of heredity to produce the pseudoscience of Edgerton, Robert B. 1970. “Mental Retardation in Non-Western eugenics, whose purpose was to limit the spread of fee- Societies: Toward a Cross-Cultural Perspective on blemindedness through incarceration in custodial insti- Incompetence.” Pp. 523–559 in Social-Cultural Aspects of Mental Retardation, edited by H. C. Haywood. New York: tutions and involuntary sterilization. It was a practice Appleton-Century-Crofts. that reached its logical extreme with the perversions of Goodey, C. F. 1995. “Mental Retardation: Social Section—Part I.” Nazi medicine, but it was pursued to greater or lesser Pp. 239–250 in A History of Clinical Psychiatry: The Origins degrees by almost all industrialized nations and contin- and History of Psychiatric Disorders, edited by G. Berrios ued well into the 1960s and 1970s in many countries. and R. Porter. New Brunswick, NJ: Athlone. Midelfort, H. C. Erik. 1999. A History of Madness in Sixteenth- Post–World War II Developments Century Germany. Stanford, CA: Stanford University Press. Rose, Martha L. 2003. The Staff of Oedipus: Transforming Disability Throughout the 1950s and the 1960s, the familiar in Ancient Greece. Ann Arbor: University of Michigan Press. strands of segregation and exclusion of intellectually Scheerenberger, Richard C. 1983. A History of Mental disabled people continued to interweave with strands Retardation. Baltimore: Paul Brookes. Stiker, Henri-Jacques. 1999. A History of Disability. Translated by of community presence and family support. By the W. Sayers. Ann Arbor: University of Michigan Press. 1960s, several parent advocacy organizations had coa- Trent, James W., Jr. 1994. Inventing the Feeble Mind: A History lesced to form a national presence in both Europe and of Mental Retardation in the United States. Berkeley: North America, lobbying for expanded educational University of California Press. 1092———Michael IV, Emperor (?–1041)

ᨘ MERCY KILLING throughout the eastern Mediterranean. Under the Umayyad caliphate, local political structures remained See Euthanasia intact, but by the Abbasid caliphate, the capital of the Arab Empire’s administration became centralized in Baghdad (762 CE). ᨘ MICHAEL IV, EMPEROR (?–1041) What is known about medicine and disability Byzantine ruler before Islam and during its expansion is difficult to summarize, as medical approaches were not mono- The Byzantine Emperor Michael IV (reign lithic but varied and often contradictory. There is a 1034–1041 CE) suffered increasingly severe epileptic general consensus, however, that healing the sick was, fits during his reign, and his attendants made efforts to and continues to be, considered in all legal schools of hide his condition from the public. During public Islam, one of the highest forms of serving Allah audiences and other ceremonies, they watched closely (God), second only in importance to performing reli- for signs of an impending fit and immediately let gious rituals. Despite medicine’s high place in Arab- ' down curtains to hide him when they saw such signs. Islamic culture, the Qur an itself seldom speaks When out walking or riding, he was surrounded by directly of medicine except for references to the cura- guards who usually managed to conceal him if he tive properties of honey, instructions for ways to wash became ill. The contemporary courtier and chronicler for prayer when ill, and statements that the sick, lame, Michael Psellus, who described Michael IV’s reign or blind are not inherently at fault for their disability. impartially and in detail, noted that the emperor Muslims consider the text to embody the guidance recovered quickly after his fits. Michael IV came to and wisdom that restores and maintains both physical ' power in very dubious circumstances and without any and psychological health. The Qur an does not significant preparation, yet Psellus considered that he espouse a mind-body doctrine of the body, but it does conducted himself well as emperor. Even with his use metaphors of disability such as deafness and condition steadily worsening, “he still supervised the blindness in references to God’s decision to make whole administration of the Empire, just as if no illness some individuals struggle to reach the truth. Mostly, were weighing upon him at all” (Psellus 1966). attitudes about and treatment of disease and disability in Islam are embedded within the historical develop- —Kumur B. Selim ment of Muslim political expansion and rule rather than derived from the sacred text. Following from this, See also Epilepsy. the force and contributions of Islamic medicine during Further Readings the medieval period were felt by both Muslim and Lascaratos, J. and P. V. Zis. 2000. “The Epilepsy of Emperor non-Muslim residents of the Arab Empire. Michael IV, Paphlagon (1034–1041 A.D.): Accounts of The early ninth century marked the Hellenization Byzantine Historians and Physicians.” Epilepsia 41:913–917. of Islam, with translations of Greek, Syriac, Sanskrit, Psellus, Michael. 1966. Fourteen Byzantine Rulers. Translated by and Pahlavi medical texts into Arabic and subsequent E. R. A. Sewter. Pp. 87–118. London: Penguin Classics. commentaries and expositions by Arabic and Persian physicians. By the end of the ninth century, nearly all ᨘ MIDDLE EAST AND of Galen’s writings had been translated into Arabic, THE RISE OF ISLAM reflecting the significant influence of his medicine in Arab scientific circles. As such, the Arab-Islamic HISTORY OF ARAB/ medical tradition is based on the Graeco-Roman one, PROPHETIC MEDICINE with humoral theory at its core. Several physicians who wrote original treatises and After the prophet Muhammad’s death in 632 CE,a compendiums on medical topics are worth mentioning great expansion of the Arab Empire took place due to their handling of disability and its treatment. Middle East and the Rise of Islam——1093

Al-Razi (Rhazes), a well-known Persian clinician intestines. Such integrity of the body is central to who lived from 865 to 925 CE, wrote Al-Hawi fi l-tibb prophetic medicine’s message. Differences in medical (All-Inclusive Work on Medicine), a 24-volume ency- approaches, however, sometimes exist within and clopedia of medicine. Among other things, this work between the Hadith of the two major sects of Islam, the deals with hereditary diseases, diseases affecting Sunni and Shia. Despite their goal of imparting a reli- women, and eye diseases. Ibn Sina (Avicenna) wrote gious value to medical practices, medical discussions of Qanun al-Tibb (Canon of Medicine), a 14-volume the Hadith are not considered part of sacred law. This work that investigated the contagious nature of pul- collected medical advice, excluding magic and exten- monary tuberculosis, described the symptoms and sive use of amulets or charms, reflects the preventive complications of diabetes mellitus, and examined var- approaches and medical treatments commonly practiced ious psychological illnesses. The Canon became the by the general population. most authoritative reference book in European univer- Throughout Islamic history, health concerns, both sities until the seventeenth century. Finally, Abu al- physical and mental, have been imbued with ethical, Qasim al-Zahrawi (Albucasis) lived in Cordoba, moral, and religious value. This social outlook has Spain, during the tenth century. Regarded as an expert underpinned the establishment and operation of pharmacist-surgeon, he wrote a manual on surgery Muslim medical institutions. For example, multifunc- called Al-Tasrif li-man `ajaza `an al-ta´lif (Recourse tional hospitals comprising libraries, pharmacies, and of He Who Cannot Compose a Medical Work of His several wards were most often established by rulers, Own) that included sections detailing methods for administrators, or other wealthy individuals and were amputating limbs and removing foreign bodies. These managed by awqaf (charitable, religious endowment) books were later translated into Latin for widespread foundations on land set aside for such purposes. use in Europe. Hospitals for specific ailments were also founded in As opposed to the formalized form of Islamic med- this way. According to most schools of thought in icine, Tibb al-nabi (prophetic medicine) consists of Sunni Islam, the endower could participate in the popularized answers to medical issues drawn from administration of the donated property. This precept the sayings of the prophet Muhammad and his com- tended to encourage the proliferation of private panions in the Hadith. A popular statement of endowments. Muhammad’s that is stressed in this type of medicine The first of their kind, institutions for lepers and the is, “God has sent down a treatment for every ailment.” blind were built in Damascus under the Umayyad Other statements refer to the restoration of health by Caliph al-Walid (reign 705–715 CE). Guides were God’s will. For instance, the question was raised in employed to help blind patients. Often patients were this literature as to whether or not God would, on given stipends when they were discharged to help Judgment Day, conclude that a person with an ampu- them return to work. Such treatment stands in sharp tation tried to escape His will. Although natural contrast to the situation in Europe, where lepers were causes of illness are recognized, God is said to inflict burned to death by decree. illness so as to test the individual’s strength and ulti- Islamic hospitals proliferated during the Abbasid mately restore his or her faithful character. As such, caliphate (750–1257), especially under Harun al- according to some sayings in prophetic medicine, ill- Rashid, who established the first hospital in Baghdad. ness has a redemptive quality to it. Other sayings, Men and women were treated separately. Special hos- however, cite health as the means to strengthen faith pitals were established for mental patients during this and as a reflection of the blessing of God. time, as well as homes for orphans and older women. In prophetic medicine, prayer rituals and the physical In addition, large hospitals included quarters for men- positions they entail are said to provide physical, moral, tal patients, and some used music therapy as a form of spiritual, and psychological healing by distracting the treatment. Treatment of mental illness was considered individual from pain. They also are believed to exercise vital for maintaining one’s honor and preserving a the body and ease ailments of the stomach, heart, and sound mind. These were thought of as fundamental 1094———Middle East and the Rise of Islam rights in Islamic law that the state should protect. Blindness was also caused by old age, corporal punish- These institutions seem to have been inspired by ear- ment, and battle injury, as well as by marital practices lier Christian efforts that established hostels for the of co-sanguinity. Starting in the tenth century, one way insane and blind in the Middle East before and during to dethrone a ruler was to blind him. Yet stories abound the early medieval period. in the Hadith about blind men becoming devout believ- Visiting the sick at home or in the hospital is ers, commanding men in battle, or predicting signifi- encouraged in the Hadith, and the sick are asked to cant events. For example, Abu Sufyan, the father of the pray for others in return due to their presumed pure first Umayyad caliph, is said to have lost one eye at the state of being. The ethics of medical care and visita- Battle of Attayif and the other at Al-Yarmuk. tion motivated the foundation of mobile dispensaries Because of the high prevalence of eye diseases, dis- during the Abbasid period. These dispensaries extended section of the eye was permitted as an exception for accessibility to medical services throughout the coun- the pursuit of medical knowledge. For the same rea- tryside. In addition, it was decreed that physicians son, specialization in and writing about ophthalmol- must visit jails, and physicians’ services were made ogy emerged before other medical specializations. more accessible in general through the location of Hunayn ibn Ishaq, an early translator of Greek texts, clinics near mosques. wrote essays on ophthalmology that were collected in a volume called Kitab al-`ashr maqalat fi l-`ayn (Book of the Ten Treatises on the Eye), which became the MEDICINE IN MEDIEVAL basis for further research and commentary on the ISLAMIC HISTORY subject for rest of the medieval period. Under Mamluk rule of Egypt and Syria (1250–1517 CE), Prevalent Ailments and Disabilities the text Nakt al-humyan fi nukat al-`umyan by Blindness was perhaps the most common disability al-Safadi (d. 1361) formed an authoritative study on in the medieval Islamic world and the one most written blindness and the blind. This biographical dictionary about in Islamic medicine. It is discussed in a variety mentions elite blind individuals including scholars, of medieval texts, including theological, philological, Qur'an reciters, lexicographers, and famous poets as historical, legal, and literary. Discussions of the visu- well as beggars who feign blindness or are truly ally disabled dealt not only with questions of a impaired. In other types of literature of this period, physical nature but also with issues of spiritual blind- blind people are treated with other physically disabled ness. Discussions of blindness also intersected with and marginal groups, referred to generally as ahl al- debates in Islam as an oral versus a written culture. ahat (those with a physical impairment). Blindness is A number of words in medieval Arabic describe treated in one of two ways: as a simple difference, such blindness, including a'ma, makfuf, kafif, and darir. The that individuals who are different in this way are not first of these words means complete disappearance of excluded from society, or unfavorably, with the blind vision, the next two refer to someone who has lost categorized along with women and beggars. Questions his or her sight, and the last is the most polite, mean- about the status of a blind person as a suitable witness ing one whose vision has gone or whose injury has or transmitter of the traditions posed legal controversies resulted in blindness. The word akmah refers to those that ultimately stemmed from these two approaches. who are blind from birth and alludes to darkness, but The greatest concern related to blindness in Islamic most words for blindness point to physical covering or legal and literary texts of the late medieval period is the injury, not symbolic darkness or mental confusion. problem of mobility and the dependence of the blind From the time of the prophet Muhammad’s death person on a guide’s vision for description, transport, until the thirteenth century, contagious diseases such as and social interactions. As Fedwa Malti-Douglas trachoma, conjunctivitis, and smallpox most often (2001) notes, such discussions point to the integration caused visible disabilities. During the expansion phase of blind individuals in society and how to best facilitate of Islam, Arabs often contracted eye diseases while it. Another concern with similar implications is the traveling, on pilgrimage or as a result of the slave trade. act of eating, particularly at a communal meal. A final Middle East and the Rise of Islam———1095 topic of discussion is the virility of the blind man, Aside from the controversial issue of blindness, which is often presented in a positive, desirous light. political leaders were generally not barred from ruling In addition to blindness, discussions about disability due to disability. For example, the Caliph Uthman was in the texts focus on such issues as disabilities of an said to have scars from smallpox. Although others orthopedic nature, especially in their relation to war or debated the point, al-Safadi claimed that prophets punishment. For instance, the Qur'an sanctions ampu- could be blind but not deaf, as this would hinder the tation for theft but exempts from such punishment a central, oral character of Islamic cultural transmis- person who steals due to dire need. Crippling from sion. Famous poets, philosophers, and other literati stoning during battle is also noted in Islamic texts. were also known to have various disabilities. Records In general, the average life span during the medieval show that women cared for wounded soldiers and for period was no more than 35 years, and infant mortality those who became disabled by fighting in wars. rates were very high. Leprosy, tuberculosis, typhus, Mental illness is acknowledged and discussed in the scurvy, dysentery, malaria, and paralysis have also Qur'an and Hadith, and during the medieval period, doc- been chronicled during medieval Islam. Epidemics tors were often appointed to visit asylums to care for of plague also occurred at various points during this patients there. Suicide is forbidden by Islamic law. period, causing extremely high mortality rates. Although there are no direct or explicit phrases in the Qur'an or Hadith that refer to this issue, the judgment rests on the idea that Allah created life and therefore humans do Medical and Social Treatment not ultimately own it. Aside from mental illness, the psy- of Disability and Disease chological state of a sick person should, as much as pos- Before and after the advent of Islam, disease and sible, be one of reservation, restraint from complaint, disability in the Arab-Islamic world were treated in attempts at cheerfulness, and deference to God. ways not unlike those seen in other societies of the time. In fact, the Islamic medical tradition necessar- DISABILITY IN THE ily integrated contributions of other cultures with the CONTEMPORARY ISLAMIC WORLD expansion of Arab territory. Islamic culture taught that all should be treated with justice, including those With the advent of the modern period, particularly after with disabilities, in order for balance in society to be the Napoleonic invasions of Middle East territories in achieved. Just as the balance of the humors formed the the late eighteenth century, the Ottoman Empire began basis for the medical treatment of disability and dis- to accept Western medical approaches as a way to mod- ease, this social balance formed the moral basis for the ernize the regime. This integration continued during the system of charitable works and mutual responsibility period of colonialism and has continued in postcolonial in Islamic societies. Middle Eastern and other Islamic societies. Still, Cauterization, cupping, bleeding, setting of bones, humoral medicine and Islamic medical texts have con- and herbal remedies were widely used to treat disabil- tinued to influence the treatment of disease and disabil- ity. The populace attributed deviations from general ity even up to the present day. health not only to imbalance of the humors but also People in the Islamic world, which entails a vast to malevolent, supernatural forces or spells; this was territory, currently seek both biomedical and tradi- especially the case with mental illness. On the other tional folk remedies to address illness and disability. hand, disability was sometimes viewed as conferring Acceptance of the disabled population varies depend- luck or blessedness on a person, who could also be ing on the country and the conflicts therein. For the seen as having special insight or as being protected general Muslim population, having a disability from the evil eye. Specific folk treatments varied accord- exempts one from making pilgrimage to Mecca, con- ing to region, ethnic tradition, and the availability of sidered one of the five pillars of Islam. particular medicinal/magical ingredients, but they Organized groups of disabled individuals currently largely included amulets marked with Qur'anic pas- advocate for greater rights and support; these include the sages or incantations. National Association for the Rights of Disabled Persons 1096———Mindfulness Meditation and Youth Association for the Blind, both based in across cultures and various traditions tend to corre- Beirut. Much of the work done on behalf of the disabled spond loosely to one of these two broad forms. One community in Islamic countries is organized, adminis- form emphasizes a single point of focus, excluding all tered, and funded by nongovernmental organizations in other mental content. This point of focus might be an connection with these grassroots organizations. object, image, thought, prayer, or chant. This form of Disabilities that commonly exist today in the Arab meditation, referred to as Samatha in the Buddhist tra- world and in other Islamic countries include infectious dition, emphasizes single-pointed concentration as a diseases such as tuberculosis and AIDS, chronic ill- means of closing out all distractions and disturbances, nesses such as heart disease and diabetes, congenital resulting in a profound sense of tranquility and calm. disabilities, cognitive and mental disabilities, and war- The other form of meditation, referred to as Vipassana related injuries, including quadriplegia, paraplegia, and or “mindfulness” in the Buddhist tradition, has a very various amputations related to land mine injuries. different emphasis. Mindfulness meditation involves Religious debates continue among Muslim jurists on the an inclusive approach to one’s ongoing experience topics of organ transplantation and genetic engineering. and promotes insight through awareness of the present moment. This inclusive awareness occurs through —Sandy Sufian one’s nonjudgmental acceptance of everything that arises in the mind and body as one observes each See also Disability Culture; Religion. moment as it arises and then dissipates. One accom- Further Readings plishes this by using the sensations of breathing as a means of staying in the present moment. The breath Conrad, Lawrence I. 1995. “The Arab-Islamic Medical Tradition.” Pp. 93–138 in Lawrence I. Conrad, Michael Neve, Vivian offers a practical means of centering oneself, as it is Nutton, Roy Porter, and Andrew Wear, The Western Medical something that is always present; it also offers a con- Tradition, 800 BC to AD 1800. Cambridge, UK: Cambridge stellation of subtle sensations and movements when University Press. experienced through careful attention. Haj, Fareed. 1968. “Major Causes of Visible Disability in the The formal practice of mindfulness can be con- Medieval Near East.” Ph.D. dissertation, New York University. ducted in a number of ways, including being very still, Malti-Douglas, Fedwa. 2001. Power, Marginality and the Body in Medieval Islam. Burlington, VT: Ashgate. as in the traditional sitting meditation, and in a form Miles, M. 1995. “Disability in an Eastern Religious Context: often called walking meditation. However, since not Historical Perspectives.” Disability & Society 10:49–70. everyone can walk, and since the spirit of this method Rahman, Fazlur. 1987. Health and Medicine in the Islamic of meditation practice does not depend on walking per Tradition: Change and Identity. New York: Crossroads. se, the term walking meditation is really a misnomer. The Arab Contribution to Medicine: University Shahine,Y. A. 1971. More precisely, this form of mindfulness is moving of Essex Carreras Arab Lecture 1971. Essex, UK: Longman. Ullmann, Manfred. 1997. Islamic Medicine. Edinburgh, UK: meditation, in which one slowly and deliberately Edinburgh University Press. moves one’s body (or part of the body) in space, focusing on the sensations of one’s breathing and the physical sensations associated with movement. ᨘ MILAN CONGRESS Access to such moving meditation is universal, ON THE DEAF although the nature of the movement may differ radi- cally in form and degree among different individuals. See Deafness, Milan Congress of 1880 on The body of research and theoretical literature on the relationship between meditation and health pro- motion has been growing rapidly in recent years. ᨘ MINDFULNESS MEDITATION Recent interest in meditation in relation to health has focused a great deal on mindfulness meditation. This There are two broad forms of meditation, and increased attention stems from the realization that although one must be careful not to see them as an expanded conceptualization of health involves dichotomous, most forms of contemplative practice perceiving it as a multitude of experiences that are Miracles———1097 undergoing continuous change. In order to actualize ᨘ MIR NASIRUDDIN HARAWI such an approach to health, however, one must gain an (?–1708) awareness of the multitude of changing experiences Afghan Sufi one is a part of at any given moment. Mindfulness meditation is one means of practicing this awareness. The Afghan Sufi Mir Nasiruddin Harawi, living at Methods of contemplative practice that foster self- Burhanpur in northern India, appears among the awareness pose a universal challenge. Because the Persian accounts of Sufism, with the usual attributes experience being fostered by any form of meditation of piety, independent thinking, charitable giving, is the process of attention, without a specific goal or rejection of gifts to himself, and vigorous rebuttals end point, nobody, in fact, has a relative advantage. of overtures by wealthy people. As a Sufi, Mir Because meditation is not based on any external cri- Nasiruddin was unusual in that he had been severely teria for “success,” it constitutes a welcome paradox disabled since his youth, with paralysis of his legs and in that it is an intensely personal experience that is left arm. His right arm still functioned, and he worked universally accessible. Individuals who make certain as a Qur'an copyist, earning enough to keep himself types of adaptations to various meditative practices alive. People revered him for his abstemious life, but will likely encounter the same discoveries and frustra- Mir Nasiruddin gave them a hard time if they were tions as those who make very different adaptations. among the powerful. When he denounced the gover- Although each person accesses the contemplative nor of the province, Munawwar Khan, for greed and process somewhat differently, all enter onto the abuse of power, Munawwar responded correctly by same path. asking the Sufi to guide him, but Mir Nasiruddin did Meditators tend to understand, through direct expe- not soften easily. He cited himself as an example of rience, that when it comes to practicing a greater aware- disobedience to Allah, which had resulted in his being ness of one’s mind and body, the challenges are similar crippled. This was not orthodox Islamic teaching, but from person to person regardless of individual differ- his aim was to put the fear of God into the governor. ences. Whether one walks or uses a wheelchair, sees He is also reported to have turned down a grant of clearly or has a visual impairment, has free movement land from the emperor Aurangzeb. or chronic pain, the process is very much the same. As such, meditation is an inclusive process that each —Kumur B. Selim person must embark on for him- or herself, pursuing See also Middle East and the Rise of Islam. no goals, casting no judgments, and accumulating no achievements. It is this process of personal observation that lends meditation its “universal design.” Further Readings Mujeeb, M. 1967. The Indian Muslims. London: Allen and Unwin, —Daniel Holland p. 67. (Based on Khafi Khan, The Muntakhab Al-Lubab, Vol. 2, pp. 556–559, Calcutta: Bibliotheca Indica.) See also Complementary and Alternative Medicine.

Further Readings ᨘ Holland, D. 2004. “Integrating Mindfulness Meditation and MIRACLES Somatic Awareness into a Public Educational Setting.” Journal of Humanistic Psychology 44:468–484. Western cultural traditions historically linked with ———. Forthcoming. “Mindfulness Meditation as a Method of Christianity have, from an early period, associated Health Promotion in Educational Settings: Proposal for an particular classes of disability with miraculous heal- Experiential Pedagogy.” Spektrum Freizeit. ing: the blind see and the lame walk more readily in Kabat-Zinn, J. 1993. “Mindfulness Meditation: Health Benefits of the New Testament than in the Old. In addition to an Ancient Buddhist Practice.” Pp. 259–276 in Mind/Body Medicine: How to Use Your Mind for Better Health, edited by cures of the lame, deaf, dumb, and blind, stories of Daniel Goleman and Joel Gurin. New York: Consumer miracles encompass the relief of ailments ranging Reports Books. from leprosy to that ultimate disability, death. 1098———Mobility Aids

Patterns established from the earliest centuries emotion at the holy place itself, and the sight of examples continued through the Middle Ages and, in some cases, of canes and crutches left by “cured” visitors create a psy- continue to the present. In medieval miracles, disabilities chophysiological context in which some disabilities seem seem to have been linked to gender and status. In a to be, at least partially or temporarily, relieved. Apart from sample of nearly 3,000 cases (mainly from medieval the religious context, in the world of modern medicine the England), 20 percent of the disabilities linked to “crip- curative efficacy latent in the mind of the patient has come pling” ailments (usually of the legs) were reported by to be appreciated; accordingly, medical professionals now lower-class women, but only 14 percent of men of the tend to treat the whole being while attempting to alleviate same social level reported crippling ailments; very few the pain and suffering of physical disability. upper-class women, and only 7 percent of the men of this —Ronald C. Finucane class, reported such disabilities. A second very common disability was reported as “blindness,” which affected See also Religion. some 16 percent of all women and 11 percent of men from the lower classes, whereas only 3 percent of upper- Further Readings class pilgrims reported this ailment. This suggests Finucane, Ronald C. 1996. Miracles and Pilgrims. New York: that the lame and the blind pilgrims at medieval shrines St. Martin’s. were generally of the lower classes and predominantly ———. 2000. Rescue of the Innocents. New York: St. Martin’s. Mirakel im Mittelalter. women. This could be accounted for by the lower Heinzelmann, M. and K. Hebers. 2002. Stuttgart, Germany: Steiner. classes’ limited access to medical treatment (which was Sigal, P.-A. 1985. L’homme et le miracle. Paris: Cerf. costly), poor environmental and living conditions (cold, damp quarters; dietary deficiencies), and perhaps a ten- dency for more women than men to suffer conversion ᨘ MOBILITY AIDS reaction symptoms. On the other hand, upper-class folk distanced themselves from the lower by reporting symp- Mobility is a fundamental human need, an important toms that were often quite specific (suggesting that their component of the achievement of other goals of inde- position enabled them to consult with doctors) or by pendence. Assistive technology—that is, technology reporting “miracles” that had nothing to do with healing; that assists individuals with disabilities in being this type was reported by only 3 percent of women and mobile—includes devices that aid in ambulation, 13 percent of men of the lower classes, but was claimed wheeled bases that provide mobility for individuals who by 23 percent of the upper-class males. do not use their lower extremities for ambulation, and The most common disabilities, then, resulted in personal transportation vehicles used in the community. afflictions of the limbs and blindness, reputedly “cured” Individuals with disabilities may use devices by a saint or at a holy shrine. It should be understood, such as lower limb orthotics to enhance their stability however, that the medieval concept of a “miracle” was during ambulation. Individuals may use lower limb quite flexible: a miraculous cure could be (a) partial or prosthetics if they have acquired disabilities through incomplete, (b) delayed or gradual, or (c) temporary, amputation or if they were born with partial limbs. with succeeding relapses. Even under these conditions, Stability during ambulation can be enhanced the “cure” was considered a miracle and recorded as through the use of common devices such as canes and such. As for the underlying mechanisms that may walkers. Canes are available in several designs, from explain some of these releases from disability, many of a single tip to a “quad”-tip base for added stability. the afflictions reported seem to have been self-limiting, Different styles of walkers are also available; some chronic but subject to remission, and psychogenic. have four rubber feet, whereas others have two rubber Today’s reported cures from places such as Lourdes feet and two wheels to enable the user to shift the follow, in general, the same pattern as that suggested by device forward more easily during ambulation. medieval data: The element of hopeful expectation that Some walkers are equipped with baskets for carrying precedes a pilgrimage, the atmosphere of heightened objects and fold-down seats for the convenience of Modalities———1099 users who may need to sit and rest during the course Further Readings of travel. Cook, A. M. and S. M. Hussey. 2002. “Technologies for Personal A variety of manual wheelchair bases are available Mobility.” Pp. 528–576 in A. M. Cook and S. M. Hussey, to enable individuals to move about in the community. Assistive Technologies: Principles and Practice, 2d ed. St. For decades, manual wheelchair design was domi- Louis, MO: C. V. Mosby. nated by heavy, chrome-plated frames, but today Websites many lightweight options exist, with designs utilizing alternate materials such as aluminum, titanium, and Rehabilitation Engineering Research Center on Accessible Public composites. Transportation, http://ncat.oregonstate.edu Rehabilitation Engineering Research Center on Wheelchair Powered wheelchair frames, which are also avail- Transportation Safety, http://www.rercwts.pitt.edu able in a variety of styles and materials, enable users Rehabilitation Engineering Research Center on Wheeled to achieve independent mobility if they can operate a Mobility, http://mobilityrerc.catea.org standard joystick or specialized controller. For the users of either manual or powered wheel- chairs, proper seating and positioning are required ᨘ to ensure the maximum opportunity to use the bases MODALITIES independently and without complications such as pressure sores and scoliosis. Commercially available The term modalities, as used in physical rehabilita- modular seating components and custom-fabricated tion, refers to techniques of application of therapeutic cushions that exactly match the contours of individ- heat and cold, whether by direct transfer of heat from ual users make such proper seating and positioning a warmer body to a cooler or by conversion of another possible. form of energy to heat. Direct methods of heat trans- Personal vehicles can also be considered devices fer include convection, conduction, and radiation. that serve as mobility aids for individuals with dis- Examples of these methods include Fluidotherapy, hot abilities. Adaptive equipment such as accelerator and packs, and infrared bulbs, respectively. Diathermies brake buildups, lever controls, and steering wheel (from the Greek dia, “through,” and thermi, “heat”) posts may be installed in automobiles to enable indi- are examples of heating by conversion and include viduals with disabilities to operate them safely. High- ultrasound, shortwave, and microwave diathermy. tech joystick controllers may also be installed to allow Ultrasound converts a high-frequency sound wave individuals to operate the acceleration, braking, and (i.e., a longitudinal compression wave) into heat. turning functions of motor vehicles. Shortwave uses radio frequency electrical currents. Safe restraint is important for all users of personal Microwave is an electromagnetic wave, similar to vehicles. For individuals who use mobility bases, the radar, that is transmitted even in a vacuum. The direct type of securement used to anchor the base to the methods of heat transfer are also direct methods of vehicle must take both safety and independence issues cooling, but in the reverse direction; that is, the human into account. body, or some part thereof, is the warmer body from Assistive technology and universal design features which heat is transferred to the cooler, as with cold of public transportation vehicles also help individuals water or cold packs. The latter transfers heat by con- with disabilities to achieve independent mobility in duction and, to some extent, radiation. If the cold the community. Examples include buses with front-end water is moving, then all three modes of transfer are kneel-down capability and airplanes with increased involved, especially convection. clear space for maneuverability. Physiological effects of heat that may be therapeu- tically useful include increased extensibility of struc- —Glenn Hedman tures made from collagen, such as burn scar and joint See also Wheelchair; Wheelchair, Electric; Wheelchair, capsular contractures, relief of muscle spasm (but History of. not spasticity), relief of pain, and possibly increased 1100———Model of Human Occupation blood flow (but see the discussion of contraindica- the diathermies should be used only with great tions below). Physiological effects of cold that may be caution, if at all, in pregnant women. useful include decreased blood flow, prevention of —Barbara deLateur swelling in acute trauma (if combined with rest, com- pression, and elevation), pain relief, and temporary See also Occupational Therapy; Physical Medicine and Rehabilita- relief of spasticity. For example, an ice pack applied tion; Physical Therapy. to the muscles in the calf may remove clonus, a man- ifestation of spasticity, for up to 90 minutes. This, Further Readings combined with prolonged static stretch, may improve deLateur, Barbara J., ed. 1994. “Therapeutic Exercise” (Special gait in patients with stroke or central cord syndrome. issue). Physical Medicine and Rehabilitation Clinics of Vigorous heat has the following characteristics: North America 5(2). The highest temperature is at the site of the pathology; Lehmann, Justus F. and Barbara J. deLateur. 1990. “Application the temperature is brought rapidly to tolerance levels of Heat and Cold in the Clinical Setting.” Pp. 417–581 in and held there for relatively long periods, such as Therapeutic Heat and Cold, 4th ed., edited by Justus F. Lehmann. Baltimore: Williams & Wilkins. 20 minutes. Vigorous heat is reserved for chronic Nadler, Scott F. 2004. “Nonpharmacologic Management of Pain.” processes. It can be achieved in deeply located Journal of the American Osteopathic Association 104:6–12. structures only with the diathermies; however, vigor- ous heat should not be considered synonymous with the diathermies, as superficial structures, such as burn ᨘ MODEL OF HUMAN scar, can be heated vigorously with superficial heating OCCUPATION agents. On the other hand, mild heat can be used even in The model of human occupation is a theoretical frame- acute processes, because the acutely inflamed tissues work developed in occupational therapy to guide are not heated to tolerance levels. For example, a hot services for disabled persons. It is the most widely used pack can be used over lumbar musculature in spasm model in occupational therapy and is also used by other associated with a herniated disc because the depth of rehabilitation professionals. As its name implies, this penetration of the hot pack is only a few millimeters model focuses on occupation, which is defined as the and is not close to the pathologic area. Paraffin is par- individual’s engagement in work, play, or other daily ticularly suitable for burn scar, as it helps soften the living activities within his or her physical, temporal, scar as well as make it more extensible and amenable and sociocultural context. The model seeks to explain to stretching therapy. how impairments affect the way persons engage in and General contraindications to heat include lack of experience their occupations. It focuses on how persons sensation in the area to be treated, obtundation (dulled are motivated toward and choose what they do, how or reduced level of alertness or consciousness) of the they organize their everyday behavior patterns and rou- patient, ischemia in the area to be treated, and cancer tines, and how performance is shaped by subjective in the area to be treated (although special oncology experience. centers may use heat as an adjunct to radiation or According to the model of human occupation, the regional chemotherapy). General contraindications to choices people make to engage in occupations emanate cold are the same, except for the cancer; safety in the from a drive for action mediated by thoughts and feel- latter has not been established. ings about personal effectiveness, what is important Specific contraindications to shortwave and and meaningful, and what is enjoyable and satisfying microwave include the presence of pacemakers and to do. The model highlights how impairments can metallic implants. Application near the eyes should be influence and resonate with a person’s sense of per- avoided, even with shielding, which does not provide sonal effectiveness and what a person holds as impor- adequate protection. Ultrasound can be used in the tant and enjoyable. It proposes that people organize presence of metal implants, but safety in the presence their actions into recurrent patterns that are regulated of synthetic resins has not been established. Any of by habits and roles. Habits are learned ways of doing Models———1101 things that unfold automatically. Roles are internal- Further Readings ized attitudes and ways of behaving that serve as a Kielhofner, G. 2002. A Model of Human Occupation: Theory and framework for looking out on the world and for acting. Application, 3d ed. Philadelphia: Lippincott Williams & The model underscores the ways in which impairments Wilkins. can disrupt or pose challenges to developing habits. It also calls attention to how societal attitudes can hinder Websites access to roles. This model conceptualizes the capacity MOHO Clearinghouse, http://www.moho.uic.edu for doing things as involving not only objectively defined abilities and impairments, but also subjective experience. Thus, the model emphasizes the lived ᨘ MODELS experience of impairments as a major factor in what a person can and cannot do. A model is a conceptual tool. Models are useful for The model of human occupation conceptualizes the making sense of reality and for achieving consensus. physical and social environment as providing opportu- They help us to see both the forest and the trees, and nities, resources, demands, and constraints that may they ensure consistency of terminology and usage. affect each person’s motivation, patterns of action, and In the field of disability, the debate over models and performance. As with personal factors, the model under- definitions has been particularly heated and long run- scores how the impact of physical and social environ- ning. This entry explores why models of disability are mental characteristics can be altered when a person important and then analyzes four different models, experiences impairments. It also recognizes that physical selected on the basis of their influence and signifi- and social environments can present significant obstacles, cance. The final section of the entry explores how ranging from architectural barriers to social injustice. models have been applied in practice and presents More than 20 assessments have been developed recommendations about resolving the models debate. (including substantial empirical validation) for use with the model of human occupation. The assess- THE IMPORTANCE OF MODELS ments emphasize capturing the disabled person’s experience and point of view. Although some involve Disability is a complex, multidimensional, scalar observation of the disabled person, most are designed concept. Whereas human beings have had impairments to give the disabled person an opportunity to report throughout history and prehistory, understandings and directly his or her own perceptions, perspectives, definitions of impairment and disability have varied in desires, and priorities. Services based on this model different societies and at different times. No universal, do not focus on changing impairments per se; instead, global definition of disability is possible, and there are they focus on how a person can be supported to many different and often incompatible approaches achieve the kind of life he or she wants. The model to the problem. Key terms—such as impairment and emphasizes that services should be based on the disability—are defined in various ways and for different client’s desires and experiences. It emphasizes that reasons within individual cultural contexts, which can achieving change ordinarily involves both physical cause confusion. Additionally, translations between and social environmental alterations as well as languages, cultures, and contexts contribute another changes within the individual (e.g., changes in atti- layer of complexity. tudes, habits, roles, and ways of performing). Disability models are parts of a larger system of To date, more than 300 works have been published understanding and knowing the world. For example, a relating to the model of human occupation. Approxi- model is based on a set of definitions and leads to mately one-third of these report on empirical studies that particular schemes of classification and measure- have examined the theory and/or utility of the model. ment. A model is therefore a map of the relationships among concepts, a way of describing and explain- —Gary Kielhofner ing the complex phenomenon that is disability. For See also Employment; Occupational Therapy; Work Incentives. policy makers, a model may be part of the process of 1102———Models

Table 1 Definitions: Nagi’s Model (1965) models is not just an abstract academic problem of definitions and classifications; rather, it is a question Term Definition of political struggle and personal identity. Pathology Interruption in body processes Impairment Anatomical or physiological abnormalities and losses NAGI’S MODEL OF DISABILITY Functional limitation Restrictions on ability to perform normal role tasks The dominant North American model of disability and obligations was developed by the sociologist Saad Nagi (1965) Disability Pattern of behavior in the context of rehabilitation. Nagi’s definition of impairment includes congenital abnormalities that may not be associated with pathologies and allows for variation of impairment along many different dimensions, distinguishing between disabled people and nondis- which may influence the nature and degree of disability. abled people, which might be important in allocating Not every impairment results in a functional limita- welfare benefits or entitlement to services to individ- tion, and functional limitation can arise from non- uals or in planning provision for populations. For impairment causes. Nagi’s definition of disability, clinicians and rehabilitation professionals, a model particularly as later refined (Nagi 1977, 1991), is may be part of the process of assessing interventions, dynamic and allows for social context. Patterns of which may enable judgments as to whether a therapy behavior associated with disability are influenced by or training method reduces pathology, increases func- impairment and limitation, by the individual’s own tioning, and affects social roles. For social scientists, reaction to and definition of the situation, and by the a model may clarify the causes of disadvantage, help reactions and definitions of others. Nagi (1991) later analysis of the relationship between individuals and clarified that environmental barriers are an element in wider social environments and cultural contexts, and disability. Nagi’s model has been used as the basis for prioritize changes aimed at reducing social exclusion the Americans with Disabilities Act, for almost all dis- or disadvantage. For disabled people themselves, a ability social policy in the United States, for statistics model is a way of understanding the world that has at United Nations and European Union level, and in implications for explaining the disability experience many other contexts. and hence has impacts on personal identity and polit- ical action. To be effective, a model needs to be clear and THE ICIDH simple. Yet clarity and simplicity make any model vulnerable to challenge. Particularly in regard to a The International Classification of Impairments, complex and contested phenomenon such as disabil- Disabilities, and Handicaps, or ICIDH, was developed ity, any model may be criticized for not providing a by Philip Wood, Elizabeth Badley, and Michael Bury full picture. This explains why debates around models for the World Health Organization in the 1970s and of disability are so important and sometimes so bitter. published in 1980. This model distinguishes among The challenge to traditional models of disability lies at impairment (the medical problem), disability (the the heart of the challenge of the disabled people’s resulting functional limitation), and handicap (the movement, particularly in the United Kingdom. The social disadvantage resulting from impairment or dis- self-organized groups that developed among disabled ability that limits or prevents the fulfillment of the people in the United Kingdom, the United States, and individual’s social role). Impairment is a necessary, many other countries during the 1970s and 1980s but not sufficient, cause of disability, whereas disabil- were not just campaigning for better social provision ity in turn is necessary but not sufficient for handi- or social inclusion, but for a radical redefinition of cap. The aim of the developers of the ICIDH was to disability itself. In other words, the debate about make the social context of disability clear. Previous Models——1103

Table 2 Definitions: ICIDH (1980) directed toward traditional approaches to disability. Many disabled people have experienced negative Term Definition cultural stereotypes and assumptions based on the med- Impairment Loss or abnormality of psychological, icalization of disability. Undoubtedly, the idea that dis- physiological, or anatomical structure or function abled people are defined by their mental or physical deficits is a major obstacle to both self-esteem and Disability Restriction or lack of ability caused by impairment social inclusion. But the framers of the ICIDH explic- itly wanted to challenge this medicalization, and the Handicap Disadvantage for an individual in fulfilling appropriate roles ICIDH is not the cause of the widespread devaluing of disabled people. Opponents of the “medical model” have created a straw man that stands for medicalization, approaches had been dominated by a narrow focus on prejudice, and the devaluing of disabled people. It is health and disease, whereas the new model used the difficult to find any authors who espouse such a “med- handicap concept to emphasize social disadvantage. ical model” or deny the importance of social barriers It has been argued that this model, although not and discrimination in the lives of disabled people. without its problems, has been a useful tool in assess- ing the social needs of disabled people. Despite the THE SOCIAL MODEL utility of the ICIDH for assessing the social needs of disabled people and situating persons with impair- The social model of disability was developed by the ments in a wider social context, it has been widely Union of the Physically Impaired against Segregation contested by disability movements, particularly in the (UPIAS), a small group of disabled people in England United Kingdom. The British Council of Disabled in the 1970s. Inspired by Marxist politics, UPIAS People—and subsequently other national and interna- retained a concept of impairment (physical impair- tional movements—has rejected the ICIDH, labeling ment) but stressed that disability should be defined as it a “medical model” or “individual model” or “personal the relationship between people with impairments and tragedy theory.” Critics have claimed that the causal a society that excludes them: relationship in the ICIDH starts with individuals and their impairments, which cause their disabilities or the disadvantage or restriction of activity caused by a incapacities, which then make them vulnerable to contemporary social organisation which takes no or little account of people who have physical impairments handicaps or social disadvantages. This is seen as and thus excludes them from participation in the main- “blaming the victim” and as placing insufficient stream of social activities. Disability is thus a particu- emphasis on the social barriers that cause problems for lar form of social oppression. (UPIAS 1975:14) people with impairments. For many disabled activists, the term handicapped is offensive; it is associated with Disabled Peoples’ International (DPI) revised these outdated social attitudes and organizations and is definitions slightly in 1982 as shown in Table 3. linked to the idea of begging and dependency through Michael Oliver used these definitions in The Politics an association with “cap in hand.” It should be noted, of Disablement (1990), a book that was a founding however, that this is a false etymology, as the term text in disability studies. However, Oliver usually used handicap derives from horse racing, not begging. the terms medical tragedy theory and social oppres- Although the framers of the ICIDH intended to cre- sion theory in preference to medical model and social ate a social model, in practice approaches inspired model. UPIAS and Oliver—and authors and organiza- by the tripartite definition tend to slip into individual- tions that followed them—succeeded in stressing the ist and medically focused remedies. Questions of social social structures and social barriers that oppress context and meaning are often neglected when the model people with impairment. Disability is an additional is operationalized. The ICIDH has perhaps unfairly burden that is imposed on people with impairment. attracted and focused the generalized opprobrium Thus, the social model soon became reduced to a 1104———Models

Table 3 Definitions: Social Model, DPI Version (1982) of life of disabled people through the reduction of discrimination and barriers. British activists have Term Definition gone further than others in actually redefining the Impairment Functional limitation within an word disability to refer to oppression or barriers rather individual caused by physical, mental, or sensory impairment than to “impairments.” Whereas activists in most other English-speaking countries favor the term people with Disability Loss or limitation of opportunities to participate disabilities—to signal that functional limitation is in the normal life of the only one aspect of a person’s overall identity—Britain community on an equal level has favored the term disabled people, to signal that due to physical and social people are disabled by society. Representatives of the barriers British Council of Disabled People campaigned for the world body—Disabled Peoples’ International—to slogan: “Disabled by society, not by our bodies.” follow their lead in rejecting the ICIDH definitions Social model approaches became associated with when it was formed in 1981. political campaigns for antidiscrimination legislation In practice, the distinction between the “barriers” and barrier removal. The corollary of this approach and “minority group” versions of the social model is was an increase in the tendencies to minimize the sig- not clear. In other documents, the U.K. disability nificance of impairment and to make social oppres- movement referred to itself as a minority group from sion the basis of disability as a political identity. the outset, even though the formal definitions do not These tendencies are responsible for several logical include this conception. As observed earlier, without a flaws of the DPI version of the social model. First, the conception of a minority group of people with impair- definition of impairment is circular: Impairment is ments who face oppression and barriers, the DPI defined as a functional limitation caused by impairment. model runs into the major difficulty that it does not Second, unlike the UPIAS definition, there is no men- specify the class of people it defines. Equally, U.S. dis- tion of impairment in the definition of disability. This cussions of the minority group model make it clear that leads to the difficulty that other social groups—such as people with disabilities are excluded by social barriers people who experience racism or sexism or poverty— and an oppressive social relationship, although this could be included within the social model definition, model is weaker than the U.K./DPI version in not even if they do not have impairments. In the attempt to defining disability as barriers and oppression. decouple disability from impairment, impairment However, the implicit combination of “barriers” ceases to be a qualification for being a disabled person. and “minority group” approaches within most social The British social model is not the only version of models does conceal tensions. In policy terms, should the social approach. For example, in the United States, political action be directed at removing structures and a focus on social oppression and social barriers is barriers to promote equality of opportunity, or should encapsulated in the “minority group model,” as theo- it be directed at benefits and protections for a disad- rized by Harlan Hahn (1988) and others. This suggests vantaged class of individuals? In terms of identity pol- that people with disabilities (as defined in the Nagi itics, the choice is between an attempt to minimize the model, for example) form a minority group that expe- differences between disabled and nondisabled people riences oppression. The minority group version of the and the drive to celebrate disability identity, cultural social model also places highest priority on barrier distinctiveness, and disability pride. removal and other social change rather than medical or Conversely, the social model has been criticized for rehabilitation interventions. In the , a neglecting the role of impairment and personal expe- “relational model” similarly situates the experience of rience, and for being difficult to apply to groups of disabled people in a broader social context. disabled people other than the people with physical Most disabled-led political campaigns worldwide impairments by whom it was devised. Often, these crit- give highest priority to the improvement of the quality icisms have come from within the disability movement Models———1105

Table 4 Terms: ICIDH and Social Model, Thomas Version from the increasingly sterile debate over models and definitions. The ICF sees disability as the outcome of ICIDH Social Model (Thomas Version) interactions between the features of the individual and Impairment Impairment the physical, social, and attitudinal world. Disability Impairment effects Handicap Disability As well as avoiding the “disability” controversy, this approach has the dual advantage of stressing the social context in which individuals are enabled or excluded while not ruling out the roles of bodies and or disability studies, as activists or researchers have medicine. No comprehensive analysis of the ICF has tried to operationalize the social model or think through been conducted to date from a disability studies per- its implications. spective. However, initial reaction from several Some have claimed that there is no intrinsic contra- authors has been skeptical, given the model’s origins diction between the ICIDH and the social model of within the discredited ICIDH schema. Professionals, disability, only a difference in terminology: Where the researchers, and policy makers have welcomed the ICIDH talks about handicap, the social model uses ICF. More than 150 papers have been written on or the term disability. In attempting to deal with the com- about the ICF, none of which has used it as a medical mon critique that the social model ignores impair- classification. This suggests that the ICF avoids the ment, Carol Thomas introduced an additional level of problems of the ICIDH and can be operationalized “impairment effects” into the social model binary in as a classification of participation and environmental her book Female Forms (1999). She defines these as interaction. DPI is a full supporter of the ICF and has restrictions of ability that are caused by impairment, officially adopted it for the UN Disability Convention. not by social relations. Although Thomas might resist this implication, the consequence might be to generate a familiar tripartite structure, as shown in Table 4. MODELS IN PRACTICE However, “handicap” (ICIDH) is the experience of It has been demonstrated that the debate about models is disability in a social context, whereas “disability” as much about politics and identity as it is about defini- (Thomas) places the causal emphasis on the society or tions. The original ICIDH model was developed by environment that excludes or oppresses the individual experts to help researchers and policy makers. The who has an impairment by failing to meet that UPIAS model was developed by disabled people them- person’s needs by actively discriminating unfairly selves as a tool for social change. For activists, the against him or her. medical/social model divide stands for the rejection of traditional approaches to disability that revolve around THE INTERNATIONAL curing or preventing impairments. The “medical model” CLASSIFICATION OF FUNCTIONING, is equated with medicalization and the prejudice that DISABILITY, AND HEALTH suggests having an impairment makes an individual inferior, incapable, and dependent. The social model A recent revision of the World Health Organization mandates and places high priority on barrier removal approach has attempted to bridge the impasse between and social inclusion rather than medicine or rehabilita- “medical model” and “social models” by sidestepping tion. Instead of special provision based on impairment, the definition of the word disability. The International the social model suggests that barriers should be Classification of Functioning, Disability, and Health removed so that disabled people can access mainstream (World Health Organization 2001), sometimes called services. Rather than counting the numbers of people the ICIDH-2 but better known as the ICF, uses dis- with impairment, the social model suggests that the ability to refer to the entire process rather than to any focus should be on discrimination and prejudice. element in the chain. It is described as a “biopsycho- The social model has implications for personal social model” in an attempt to offer a way forward identity as well as for policy and practice. It has 1106———Models

Table 5 Disability as the Outcome of Interactions: Terms in been challenged by many activists because it rests on a the ICF Model (2001) definition of disability as a medical condition. Body function and structure Yet applying and implementing social model approaches is difficult in practice, and sometimes Activity impossible. Unless impairment is part of the definition Participation of a disabled person, no protected class can be identi- Environmental factors fied in legislation. Without counting people who have impairment, it is difficult to predict the numbers of users of services and to create adequate provision. The proved hugely effective in enabling people with implementation of universal design and the barrier impairments to move from a position in which they removal mandated by antidiscrimination legislation believe they themselves are the problem to a position have led to huge improvements in environmental in which they identify society as the problem. access. However, some argue that an entirely barrier- Psychologically, individuals move from a poor self- free world is a utopian dream, for several reasons: image based on self-pity to a strong political identity because the natural environment cannot be made based on anger against a disabling world. For many, accessible, because it is impractical to make many this is also a move from being an isolated individual existing buildings or systems accessible, and because to being a member of a vocal minority group, based on different impairments necessitate different accommo- solidarity, resistance, and pride. The self-esteem bene- dations, some of which may be mutually contradictory. fits that the social model has for individual adherents The social model has huge rhetorical power as a help explain why the social model is an article of faith social critique and mobilizing force. It also has great for many in the U.K. disability movement and why moral power: If society has constructed disability, debates about revising or replacing the social model then it has a duty to remedy the situation and remove have been so heated and acrimonious. barriers. But the model is difficult to operationalize UPIAS activists never denied that impairment is and implement, and it is misleading as an explanation important. They did not argue against medical care, of the social world. The ICIDH may have been more only against the discriminatory ways in which it is coherent, but it failed to place a high enough priority delivered. Yet the consolidation of the social model on addressing the social factors that cause problems through identity politics has led some activists to for people with impairments. Moreover, the ICIDH express opposition to any impairment-based approach. was never likely to inspire political allegiance or rad- For example, there has been rejection of medical ical action by and on behalf of disabled people. In research, therapies, and attempts to prevent impair- practice, the ICIDH and similar models risk collapsing ment; opposition to surveys of the numbers of people disablement back into impairment-based approaches with impairment; and rejection of mono-impairment and neglecting the broader structural causes of the organizations as well as services provided to people on disadvantage faced by disabled people. the basis of impairment distinctions. Because the The ICF was developed over seven years with con- social model has become a litmus test for progressive tinuing input from DPI, the European Disability Forum, approaches to disability, particularly in Britain, inter- and a variety of other organizations of and for disabled ventions based on the ICIDH definitions have been people. The ICF has been adopted by DPI because it rejected. For example, a government advertising cam- highlights the role of environments, accommodations, paign to challenge prejudice against disabled people and discriminations. To date, it appears that applications used the slogan “See the person, not the disability.” of the ICF have avoided collapsing the social aspects The disability movement rejected the initiative of the experience of disability into individual, medical because, activists argued, the slogan should have been explanations. Yet the social model approach remains phrased “See the person, not the impairment.” Equally, favored by disabled people’s organizations in the United the 1995 Disability Discrimination Act (U.K.) has Kingdom and is influential worldwide. Models———1107

Disability is a complex, multidimensional, scalar to pay attention to the details of the research, policies, concept. As Irving Zola (1989) and many other or provisions that are being attempted. Two funda- authors have pointed out, impairment is part of the mental questions underlie all such interventions: human condition. Over a lifetime, all individuals 1. Will this intervention improve the quality of life experience limitations, vulnerabilities, and permanent of disabled people? Rather than focusing on ideo- or transitory illnesses or impairments. Impairment per logical judgments about models, critical evaluation se cannot therefore be the defining criterion for a dis- should explore the outcomes of interventions in abled person, although the presence of impairment— terms of the quality of life of disabled people. or belief that it is present—is necessary for a person Quality of life can be improved through the to be defined as disabled. The category “disabled reduction of pain and suffering, the improvement people” exists only because social definitions and of physical functioning, the provision of aids and thresholds have been adopted. Different definitions adaptations, the removal of social and environ- and thresholds will result in the category’s being mental barriers, and the reduction of discrimina- larger or smaller, excluding or including people with tion and oppression. different impairments and experiences. Disability cat- 2. Is this intervention targeting the most appropri- egories play wider roles in social policy, as Deborah ate level of disablement? This question draws Stone has demonstrated in her book The Disabled attention to the complexity and multidimension- State (1984). ality of disablement. Difficulties arise when It should be accepted that models and definitions medical or individual solutions are offered for are relative and contingent. Disablement is always a problems that are social and structural—and vice combination of the individual and the structural, the versa. Disablement involves medical, psycholog- ical, and social aspects, and it cannot be reduced biological and the social. Different questions— to any one of these dimensions. medical, psychological, social—have to be investi- gated at different levels of a disability model. Efficiency and appropriateness are major criteria for Disabled people experience a combination of bodily assessing particular proposals. restrictions and social barriers, and the two factors —Tom Shakespeare, Jerome cannot easily be extricated from each other. Where the E. Bickenbach, David Pfeiffer, social model would make a polar distinction between and Nicholas Watson “impairment” and “disability,” in practice impairment is always already social, and impairment is always See also International Classification of Functioning, Disability, implicated in disability. and Health (ICF/ICIDH); Social Model: Sweden. Therefore, models should not become the touch- stone of progress. It may be impossible to choose one Further Readings model for every situation. A model is not an end in Altman, B. M. 2001. “Disability Definitions, Models, itself, but a means to an end. Models do not matter, in Classification Schemes, and Applications.” In Handbook of themselves, but are often taken as proxies for wider Disability Studies, edited by G. L. Albrecht, K. D. Seelman, political or academic affiliations and strategies. Many and M. Bury. Thousand Oaks, CA: Sage. Bickenbach, J. E., S. Chatterji, E. M. Badley, and T. B. Üstün. commentators believe that the debate over models has 1999. “Models of Disablement, Universalism and the now become an obstacle to the development of dis- International Classification of Impairments, Disabilities and ability studies and achievement of the equality and Handicaps.” Social Science & Medicine 48:1173–1187. inclusion of disabled people. Good initiatives have British Council of Disabled People. 2002–2003. “The Social been created on the basis of “medical models” and Model of Disability and Emancipatory Disability Research: failures have resulted from “social models,” as well as Briefing Document.” Retrieved April 11, 2005 (http://www .bcodp.org.uk/about/research/shtml). vice versa. Rather than using the concepts “medical “Definitions of Disability in Europe Final Report.” 2002, model” and “social model” as ways of judging “reac- September 13. Retrieved April 11, 2005 (http://www .brunel tionary” and “progressive,” activists and scholars need .ac.uk/depts/govn/research/Appendix1.doc). 1108———Modernity

Hahn, H. 1988. “The Politics of Physical Differences: Disability eminent Victorians thus appeared old-fashioned to a and Discrimination.” Journal of Social Issues 44:39–47. new generation of “moderns” at the beginning of the Nagi, S. Z. 1965. “Some Conceptual Issues in Disability and twentieth century, and the motto of poets of the time Rehabilitation.” In Sociology and Rehabilitation, edited by M. Sussman. Washington, DC: American Sociological Association. was to “make it new.” The ubiquitous emphasis on ———. 1977. “The Disabled and Rehabilitation Services: A “newness” within modernity signaled an epistemolog- National Overview.” American Rehabilitation 2(5):26–33. ical break with the certainties of premodern societies. ———. 1991. “Disability Concepts Revisited: Implications for Modernity for U.S. and British citizenry of the first Prevention.” In Disability in America: Towards a National half of the twentieth century meant new formats for Agenda for Prevention, edited by A. M. Pope and A. R. new thoughts—innovative ways of writing and thinking, Tarlov. Washington, DC: National Academy Press. Oliver, M. 1990. The Politics of Disablement. London: the infusion of women’s views into university life and Macmillan. male-dominated labor markets, short skirts and short Shakespeare, T. N. Watson. 2002. “The Social Model of hair, rapid urbanization, a jazz era, and silent film Disability: An Outdated Ideology?” Research in Social Science narratives, among other products and technologies. and Disability 2:9–28. As William Carlos Williams, a preeminent “modern” Stone, D. A. 1984. The Disabled State. Philadelphia: Temple physician-poet, put it in his poem “To Elsie” (1923): University Press. Thomas, C. 1999. Female Forms: Experiencing and “The pure products of America go crazy.” Williams Understanding Disability. Buckingham: Open University thus conjoins mass production with the now destabi- Press. lized institutions of family and social life that occur in ———. 2002. “Disability Theory: Key Ideas, Issues and the wake of the first “modern” war, World War I. The Thinkers.” In Disability Studies Today, edited by C. Barnes, dedicatee of the poem, Elsie, was a “broken-brain” M. Oliver, and L. Barton. Cambridge, UK: Polity. nanny who came to work for the Williams family from Union of the Physically Impaired against Segregation. 1976. Fundamental Principles of Disability. London: Union of the an institutional orphanage as an adult ward of the state Physically Impaired against Segregation. of New Jersey. The poem thus invests modernity in World Health Organization. 1980. International Classification her figure and makes her into an emblem for speed and of Impairments, Disabilities, and Handicaps: A Manual of productivity in modern America gone awry. Elsie—at Classification Relating to the Consequences of Disease. least in Williams’s celebrated poem—indicates the Geneva: World Health Organization. degree to which the modern age became obsessed ———. 2001. International Classification of Functioning, Disability, and Health. Geneva: World Health Organization. with human “defects.” Disabled people were continu- Zola, Irving. 1989. “Towards the Necessary Universalising of a ally represented as somehow mis-fit or displaced in Disability Policy.” Milbank Quarterly 67(Suppl. 2, pt. 2): the midst of a press to standardize public and private 401–428. spaces. Their bodies and minds were thought to fall too far short of an idealized, albeit elusive, body—one Websites that would be measured, weighed, surveyed, and British Council of Disabled People, http://www.bcodp.org.uk assessed for “baseline” capacities. World Health Organization, http://www.who.int Thus, the “modern era” (generally identified here as synonymous with the age of industrialization) seg- mented bodies into their constituent parts. This ᨘ MODERNITY process of segmenting bodies sought to make labor power more efficient while also rendering any single Modernity expresses the self-definition of a generation body replaceable. Assembly lines for autos, such as about its own technological innovation, population those instituted by Henry Ford and celebrated as egal- makeup, and “progressive” social organization itarian mergers of human and machine by the mural- schemes. To participate in modernity is to conceive of ist Diego Rivera, implied better practices and one’s society as engaging in organizational and knowl- technologies for all. But they also further entrenched edge advances that make one’s immediate predeces- citizens within a deepening nexus of debt and sors appear antiquated or, at least, surpassed. The consumption—conscription to labor power. Ford Modernity——1109 declared that each worker should earn the purchasing of premoderns or “ancients.” “God is dead,” declared power to drive an automobile even as he would spend Friedrich Nietzsche (1844–1900), a famous German his workweek toiling on an assembly line to make philosopher of modernity, not hesitating to add that cars for others. this was because his contemporaries had killed God Under modernity, technologies develop that yield off with their own disbelief. In the field of philosophy, advantages of speed or efficiency over older terms premodern beliefs yield to modern dismay about how of labor and consumption that rapidly disappear on a social systems, from organizations of class privilege historical horizon. These technologies result in revised to theories of heredity, determine a great deal of life workplace organization, often displacing workers with experience for any one individual. Nietzsche himself established expertise, at the same time they introduce proposed that modernity is typified by crises in modifications to the organization of everyday life. systems of morality, so that once belief is crushed From movable type to steam engines, from the tele- there can be no restoration. Of course, he discussed graph to the advent of photography, technological the fact that many of these crises in self-perception innovations alter modes of inhabiting environments occur due to advancements in knowledge and an and daily living for entire population groups. Such uncritical embrace of new technologies. innovations also precipitate the mass exclusion of whole For example, Copernican proofs that the earth communities under various rubrics of inferiority— revolves around the sun heralded revolutions in rea- namely, immigrants, people of color, lower-class soning about the universe and the not-so-central place people, and disabled people. Often marginalization of humans within it. Charles Darwin’s (1809–1882) occurs on the basis of a mutual referencing strategy theories of natural selection, demonstrating as they do that is bound up with disability definition. In other that a changing human species evolves among multi- words, individuals situated in categories of incapaci- ple shifting life forms, precipitated the arrival of a tation or insufficiency to the demands of a modern fully “modern” sensibility. The founder of modern world rarely find themselves referenced by only one psychoanalysis, Sigmund Freud (1856–1939), who stigmatizing category. Instead, their bodies become studied states of psychological aberrance in order to identified as hosting multiple insufficiencies that are expand definitions of human existence, also typifies, often believed to be “biological” in nature. in his work, the displacements wrought during moder- Behind the development and introduction of tech- nity. His proposition that an unconscious conditions nologies are the investments of an increasingly global human behavior and actions likewise unsettled gen- capital that targets markets and labor pools. The mar- eral Enlightenment faith in human rationality. In the ginalizing strategies of modernity ultimately sought to film Modern Times (1936) Charlie Chaplin spoofs the produce what Marx called “surplus labor pools”: labor users of high-speed contraptions; herein, products “gone rendered “superfluous,” “expendable,” or “excessive” crazy” not only foil the ambitions of their users, they to the needs of capitalist markets. In reality, modernity also seem to have plans for the users that mechanize oversaw strategies of worker disqualification where all involved. entire populations found themselves sidelined from As this entry has emphasized, technologies them- the demands of labor. All “inferior” peoples of the selves participate in this decentering of human confi- modern period presumably shared a natural incapacity dence in perception and planning. Modernity as a to function competitively in the labor market, and, historical coordinate, a mere marker in a chronology consequently, they were relegated to segregated com- of named epochs, depends on the distinction between munities, reservations, almshouses, and workhouses, new modes of existence as well as new perceptions and—particularly in the case of disability—confinement of a self that attends to transport, architecture, mass in colonies, “training centers,” and institutions. events, and media that quite simply replace former To operate within modernity also means to partici- ways of inhabiting space and experiencing time. Thus, pate in the belief that one finds bold contrast between some scholars will even go so far as to locate moder- modern conceptions of the cosmos and the worldview nity with the advent of the printing press and the mass 1110———Modernity circulation of print information that brings about medical practices that reference human anatomy as a expanded literacy in a middle class during the fifteenth result of the direct observation of dissected human century. corpses. The practice of anatomical dissection, with The most prevalently cited examples include its violation of sacred beliefs about bodily boundaries, microscopic technologies that replace the human eye neatly encapsulates a change in sensibility toward as an arbiter of evaluation and laboratory heredity behaviors that violate sacred prohibitions with the texts that can prove parentage with or without testi- goal of knowledge about bodily mechanics. In his mony. Often bodies themselves experience a new infe- lectures on the topic “abnormal,” Michel Foucault riority as they come to be outdistanced by superior locates a rupture between agrarian communities and visual, aural, and detective devices of modernity. All the arrival of a modern state in its imposition of psy- bodies might come to be perceived as increasingly chiatric and confinement solutions for bodies deemed inadequate without supplementation, even as methods pathological. In this scholarship, confinement prac- and mechanisms of enhancement, from telephones tices, as opposed to quarantine colonies (such as those to typewriters, increase. The camera eye, for example, for leprosy, tuberculosis, epilepsy, and “insanity”), can seem to capture discrete elements of an activity initiate modernity as a matter of brutal concealments, and therefore offer a vantage point superior to any torture, and controlling technologies that take place human eye. Eadweard Muybridge (1830–1904), an under professional purview. Foucault traces a shift early technician of camera and motion, combined sci- toward modern practices when an ordinary “village entific experimentation with photography in a series idiot” becomes susceptible to medical interventions, of chronophotographic demonstrations. He famously experimentation, state management, and regulation— showed that a horse becomes fully airborne during a in other words, when mere madness becomes mental cantor. The cinematic eye can therefore improve on illness, a modern category to be officiated, contested, the human gaze, wholly delimiting its privileged gaze recorded, and detected. If corpses can be “cut up,” on reality, just as Freud’s modern concept of a human then all bodies become potential targets for a host of “unconscious” literally undermines the stated inten- modern interventions. tions of individuals. From a disability studies perspec- Certainly this clarifies the point that little consen- tive, it should be noted that Muybridge also did sus exists as to when modernity begins. However, chronophotographic studies of “nonnormative” histories on and about Western Europe do concur that human gaits, inaugurating an entire field of analysis, a modern era arrives at the end of colonial invasion known as gait training analysis, that is linked to imag- and expansion across the globe, with modernity com- ing devices. Likewise, early silent films turned on the ing at the end of a chronology that proceeds from the “secret” knowledge offered by a camera that showed ancient world, the Middle Ages, the Renaissance, the a beggar getting up and walking away with a charita- Enlightenment, the Age of Exploration, and the period ble offering after having feigned paralysis or blind- of colonial expansion. A British writer who straddled ness. In each instance, the powers accorded to visual colonial expansion and World War I, Ford Madox recording devices sought to break down, survey, and Ford (1873–1939), wrote a four-volume epic in order expose the exact source of dysfunction. This form of to declare that with World War I there would be “no modern mechanization shifted conceptions of the more parades,” meaning that the idea of fighting for body from an “organic” to an increasingly “artificial” any heroic cause had been rendered obsolete—the entity. In the process, prior ideas about the body as a antiquated product of a bygone era. For Ford, wars are sacrosanct temple gave way to a more fluid and, ulti- fought on behalf of economic interests with little mately, disposable material being. effective resistance to the military conscriptions of This lowering threshold of respect wrought by modern nation-states. Little meaningful celebration modernity can be analyzed across numerous fields accompanied a “victory” for the living participants of inquiry. For instance, many scholars, particularly in who survived such violent enterprises. In short, the wake of Michel Foucault, connect modernity to modernity means that heroism is dead. Modernity———1111

In modernity, governance by distant colonizing recounts having encountered on a colonial venture on powers yields to governance by locals, and the bound- the Congo while he drifts in present time in a boat on aries of nation-states are perceived to reflect oversight the Thames. He remembers native bodies tossed aside by resident officials as opposed to colonial military as mere labor power now exhausted, but he also powers. Occurring in tandem with the arrival of emblematizes Africa as a site of disease. This would modern warfare methods, those capable of enacting have been so for the European journeyers, such as genocide on a massive scale, modernity has been thought those who often accompanied David Livingston, who to indicate awareness of the missionary conceit that lacked immunity as adults to a common West African colonial settlement plans and military ventures overseas childhood illness such as “yellow fever.” “The horror, constitute sources of “improvement” for nonmodern the horror,” reputed to be the dying words of the geographies. Thus, not only were bodies deemed character Kurtz, may refer to the protagonist himself, insufficient, but entire nations could be imagined as his venture, or the blissful ignorance of the ultrafemi- “damaged goods.” Irish poet William Butler Yeats’s nine “intended,” who, as the evident manifestation dictum that “the center cannot hold” in his poem “The of civilized society, must be protected from men’s Second Coming” presages the degree to which modern savagery at all costs. societies seem to experience themselves as fracturing Until quite recently, with the dissolution of the along with the bodies housed within them. As the nine- Soviet Union, modernity had been taken, more or less, teenth century came to a close, numerous cries could as the matter of an international consensus on nation- be heard that even the most advanced nations were state borders. With a growing global practice of com- succumbing to the forces of degeneration. Nations modity capitalism, with capital’s requisite ventures to continually assessed their “wealth” in terms of per- open up consumer markets, modernity now is mostly centages of nondefective bodies inside their borders. associated with ever-increasing speed, both in the As the 1927 U.S. health propaganda film Are You Fit to transport of financial exchanges and in cross-border Marry? put it: “As goes its babies so goes the nation.” communications. It is important to note the fact that In order to actively improve the “national stock,” mod- modernity as crisis, where “the center cannot hold,” erns sought to sequester as many deviants as possible. operates differently across classes and privileged par- A dream of homogeneous futures guided much action ties. In that sense, modern dislocations may be her- during the modern period, and social marginals found alded as opening up new possibilities for those on the themselves increasingly under siege by a variety of periphery—those previously excluded from the spoils improvement schemes contrived by “progressives” and of empire and the opportunities of education and other professed social do-gooders. leisure time. Hence, women in London and Chicago, In 1893, Edvard Munch painted The Scream, a African Americans in Harlem, and many others find figure that is often taken as a quintessential expression potential for professional development and expression of modernity. Munch himself wrote that he had expe- in the wake of the empire’s crises in epistemologies rienced intense fear during a moment of isolation and central governance. Likewise, and particularly for while on an evening walk: “My friends walked on—I groups, institutions, and colonies of disabled persons, stood there, trembling with fear. And I sensed a great, interior pockets of self-governance or incarceration infinite scream pass through nature” (quoted in BBC may not yield as readily as schools, churches, or prin- News 2004). In the painting, wavy lines and a red sky cipalities, for example, to oversight from nation-state capture the sensation of terror he describes, and governance. Thus, they are already “colonies” as Munch’s effort to capture his own feelings of besiege- opposed to under the purview of central governance. ment by emotions struck a cord of sentiment for many In sum, nearly all scholars of modernity agree that denizens of the time. Joseph Conrad’s 1902 novella scientific methods serve neatly to mark a break Heart of Darkness, which is also taken as an emblem- between modern and ancient in that research designs atic text of modernity, matches the psychic journey- precisely enable a new means for testing reality— ing of a European protagonist with the atrocities he from telescopes to electron microscopes, case notes, 1112———Modernity surveys, weights, and scales, along with systems for postmodernism. Today, theorists of modernity look data analysis from means deviation equations to for the effects of postnationalism in the face of uneven infrared scans. Yet unlike Enlightenment thinking development. The underside of a belief in the good- about scientific experimentation, often now termed a ness of modernity is perpetual interpretation of agrar- mere “faith” in Enlightenment principles, citizens in ian regions as underdeveloped. Modernity thus comes modernity are wise to the ways that scientific devel- to define savage inequities on a global scale; infra- opment results in many means for mass destruction structure development such as roads, plumbing, mass and population control alongside material improve- transportation, and labor practices; and cultural biases ments in the standards of daily living. In this respect, in the provision of public education. Today, modernity theorists of modernity seek out means for resistance, most likely means the rapid-pace movement of global but not necessarily revolution, no longer believing that capital, industries run for the profit of invisible share- an equitable society can be gained through military holders, satellite transmission of images, and immedi- struggle or transcendent social visions. Some have ate transglobal communication. Part of this fluid mourned this surrender of revolutionary universal pro- transcultural passage of capital also entails traffic in grams as the final capitulation to capitalist logic. The disability technologies and policies usually designed failures of communism to provide fully desirable for Western contexts. Such an export economy of dis- modes of inhabiting the world inform this pessimism ability results in absurd situations: Wheelchairs and indicate, themselves, the difficulty in sustaining a designed for paved streets literally run aground and belief in any effective counterforce to the new global shatter when faced with the demands of other terrains, inequities wrought by venture capitalism. and disability service delivery systems designed for Inasmuch as modernity displaces a recent past, it is consumption practices in one capitalist context fail of often associated with forward-looking progressive inertia in other, less acquisitive, cultural venues. social policies that include modes of social engineer- This glimpse of the underbelly of modernity has ing. For disability, then, modernity often indicates come to the fore in influential scholarship and think- ideologies of eugenics and the promise to eradicate ing of our own time. For instance, political theorist certain kinds of human “suffering” and “misery” Zygmunt Bauman (1989) sees modernity through a through prevention and segregation campaigns. With much darker lens when he observes that Nazi genoci- this emphasis underwriting the schemes of modernity dal procedures toward disabled, ethnic, and sexually with respect to “deviant” bodies, one witnesses an stigmatized populations became an “inevitable” con- explicit emphasis on bodily rather than social sequence of the modern regulation of bodies and “renewal.” Rather than work to make plastic environ- measures taken for the sake of “population” control. ments more flexible—and thus habitable—modernity Bauman inflects modernity as riddled with assembly sets its sites primarily on the enhancement of individ- lines and population demographics. Within such regu- ual physicalities and minds to fit inflexible locations. latory labor systems, some bodies find themselves If those bodies fail in such efforts, then they are effec- excluded almost by definition. Within modernity, the tively extracted from participation. The body winds rising prominence of labor capacity as synonymous up as the barometer for all interventions—a surface with the privileges of citizenship came to eclipse older to be molded by the forces of history come home to definitions of embodied difference (such as monstrosity roost. Modernity can be viewed as a rather sinister or marvel). In their place, disability became increas- program in this respect, one that is led by innovations ingly tantamount to “incapacity to work.” In other in manufacturing and economic venues while neglect- words, modernity oversaw a transition of the power of ing the needs of populations that must navigate those extreme alterity by promoting a domesticating mis- very locations as well as many others. sion that tended to denote disability as a mere loss of At present, modernity no longer means “modern” productivity. Disability theorists then must consider as exemplified by the period subsequent to modern the ways in which modernity actually produces warfare, typified by two world wars, and succeeded by disability as a matter of displaced persons. Molecular, Cellular, and Tissue Engineering——1113

In many ways, disability groups are directly con- ᨘ MOLECULAR, CELLULAR, solidated out of shared predicaments of modernity: AND TISSUE ENGINEERING those persons who have been displaced from mass transit, trampled in crowd control settings, and inden- Molecular, cellular, and tissue engineering is an tured for their subsistence to welfare schemes pro- emerging discipline that addresses the principles and moting absolute dependency. One thinks of the bodies development of engineering therapies for restoring the that cannot make it across moving walkways at structure and function of disordered molecules, cells, railway stations or of buses with steep stairs at their and tissues. Pathological disorders occur in biological doors, with no alternative navigation pathway in sight. systems at the molecular, cellular, and tissue levels in Under modern management practices, categories for response to genetic alterations and environmental “special assistance” get generated in order to accom- stimulations induced by chemical, microbiological, modate for “normative” patterns and expectations and physical factors. Engineering therapies are estab- necessitated by policies and practices that prove lished based on the mechanisms of pathological disor- exclusionary but nonetheless may be insisted upon as ders and principles of biomedical engineering (see mandatory. Voice technology ordering at drive- Langer and Vacanti 1993; Liu 1999). through restaurants, for example, excludes those who Molecular disorders occur due to mutation of genes might order by sign language, gesturing, or pointing. or alterations in gene activity. Gene mutation often Those who can’t push open heavy doors must wait abolishes protein expression or generates malfunc- until someone comes along who can do so. Disability tioned proteins, whereas alterations in gene activity politics concerns itself with modern environments, induce an increase or decrease in protein production. from websites to cruise ships to personal facilities, These changes influence cellular activities, such as that in demanding body conformities build exclusions cell proliferation, differentiation, apoptosis, migra- into their offering and, therefore, quite undemocrati- tion, and adhesion, inducing or enhancing pathologi- cally create groups of nonusers. cal disorders. For gene mutation-induced disorders, such as sickle-cell anemia, mutant genes can be iden- —Sharon L. Snyder tified, analyzed, and manipulated through the use of See also Citizenship and Civil Rights; Disability Culture; genetic technologies. A therapeutic strategy for such Inclusion and Exclusion. disorders is to replace the mutant gene with a natural Further Readings or engineered gene, which can be expressed to correct mutation-induced disorders. An example of such a BBC News. 2004, August 22. “Munch’s Agonising Masterpiece.” strategy is the introduction of an engineered beta BBC News Online. Retrieved May 18, 2005 (http://news .bbc.co.uk/2/hi/entertainment/3588432.stm). A-globin gene into hematopoietic stem cells to treat Bauman, Zygmunt. 1989. Modernity and . Ithaca, sickle-cell anemia, which is caused by the formation NY: Cornell University Press. of abnormal hemoglobin due to a single-point muta- Foucault, Michel. 1961. Folie et Deraison: Histoire de la folie a tion in the beta A-globin gene (see Pawliuk et al. l’age classique (Madness and Civilization: A History of 2001). For disorders due to alterations in gene activ- Insanity in the Age of Reason). Paris: Plon. ity, such as atherosclerosis, genes involved in patho- ———. 1976. La Volunté de savoir. Paris: Editions Gallimard. ———. 2003. Abnormal: Lectures at the Collége de France genic processes can be identified and analyzed 1974–1975. Edited by Valerio Marchetti and Antonella through molecular approaches. An effective engineer- Salomoni; translated by Graham Burchell. New York: ing approach for such disorders is to introduce into Picador. target cells with genes encoding proteins that suppress Mitchell, David T. and Sharon L. Snyder. 2005. Cultural pathogenic processes induced by altered gene activi- Locations of Disability. Chicago: University of Chicago ties. An example is the introduction of growth Press. Pernick, Martin S. 1996. The Black Stork: Eugenics and the Death inhibitor genes into atheromatous cells to suppress of “Defective” Babies in American Medicine and Motion cell proliferation and thus to reduce the progression of Pictures since 1915. New York: Oxford University Press. atherosclerosis, a disorder enhanced by the up-regulation 1114———Monsters of growth factor genes (see Dzau, Braun-Dullaeus, ᨘ MONSTERS and Sedding 2002). Cell and tissue injuries or disorders occur due to For most of Western history, the monster exemplified physical impacts, chemical toxication, ischemia, can- one extreme form of what is now known as disability, cerous metastasis, and/or microbiological infection, the departure from expected physical type. Monsters resulting in disability of involved organs. A therapeutic included a variety of people and animals with dra- strategy is to identify and collect functional cells from matic and obvious congenital anomalies, such as con- the hosts or donors, regenerate cells in vitro, construct joined twins and intersexuals, beings with too many or cell-based tissues by incorporating cells into scaffolds too few members, and the unusually short or unusu- of biological matrix or synthetic polymers, and replace ally tall. Although even in its heyday, the medieval disabled cells and tissues with regenerated cells or tis- and early modern period, the category of the mon- sue constructs. Such an engineering approach can facili- strous overlapped only imperfectly with disability, it tate the regeneration of injured tissues and prevent nonetheless shaped modern attitudes toward people permanent organ disability. Because stem cells, includ- whose bodies lie outside the norm. ing embryonic and adult stem cells, are capable of self- Medieval European writers derived the word renewing, differentiating, and repopulating, these are monster from the Latin verb monere, which means preferred cells for cellular and tissue engineering. An “to warn.” In Christian Europe, as in the ancient example is the repair of bone defects with bone stem world, monsters were originally understood as signs cells from the marrow stroma (see Quarto et al. 2001). of divine displeasure, by which God informed human For the past decade, experimental investigations communities of His anger at their misdeeds and have provided sufficient information for the establish- warned them of misfortunes to come if they did not ment of molecular, cellular, and tissue engineering mend their ways. At the same time, however, the term therapies. Clinical trials have been conducted to test could signal another characteristic of monsters: the the feasibility and effectiveness of these therapies. It is fascination they engendered. “Monsters are called expected that molecular, cellular, and tissue engineer- monsters,” one seventeenth-century writer noted, ing will contribute significantly to the treatment of “because everyone wants to show them to each human disorders and disabilities. other”—a play on the Latin verb monstrare, which means “to show” (see Daston and Park 1998:200). —Shu Q. Liu Thus, at the root of the premodern understanding of monsters lay two powerful ideas: spectacle and threat. Further Readings The idea of threat was at first the most powerful. For Dzau, V. J., R. C. Braun-Dullaeus, and D. G. Sedding. 2002. the Greeks and Romans, as for medieval Europeans, “Vascular Proliferation and Atherosclerosis: New monstrous births were one type of portent or prodigy, a Perspectives and Therapeutic Strategies.” Nature Medicine category that included celestial apparitions, comets, 8:1249–1256. earthquakes, and unusual meteorological phenomena. As Langer, R. and J. P. Vacanti. 1993. “Tissue Engineering.” Science signs of divine wrath, they evoked terror and dread. In 260:920–926. 1317, for example, when conjoined twin boys were born Liu, S. Q. 1999. “Biomechanical Basis of Vascular Tissue Engineering.” Critical Reviews in Biomedical Engineering in the countryside outside of Florence, the city fathers 27:75–148. refused to look on them out of fear, and a bas-relief Pawliuk, R., K. A. Westerman, M. E. Fabry, E. Payen, R. Tighe, depiction of the boys was placed over the gate of one of E. E. Bouhassira, et al. 2001. “Correction of Sickle Cell the local foundling hospitals to spur the population to Disease in Transgenic Mouse Models by Gene Therapy.” live in conformity with God’s will. Many such children Science 294:2368–2371. died in infancy—the Florentine twins lived only 20 Quarto, R., M. Mastrogiacomo, R. Cancedda, S. M. Kutepov, V. Mukhachev, A. Lavroukov, et al. 2001. “Repair of Large days—and some were even killed at birth out of fear that Bone Defects with the Use of Autologous Bone Marrow they might harbor demons; having delivered their threat- Stromal Cells. New England Journal of Medicine 344:385–386. ening message, they had fulfilled their purpose. Monsters———1115

Even in the Middle Ages, however, we find other, physicians and natural philosophers had also offered less fearful reactions to people of anomalous appear- natural explanations for the birth of people of unusual ance. The English chronicler Matthew Paris recorded appearance. The French surgeon Ambroise Paré the arrival in 1249 of an extraordinary young man in invoked, among other things, the presence of too much the Isle of Wight: “He was not a dwarf, for his limbs or too little matter in the uterus, the effects of maternal were of just proportions; he was hardly three feet tall imagination, and the workings of chance. But late- but had ceased to grow. The queen ordered him to be seventeenth- and eighteenth-century naturalists—the taken around with him as a trick of nature to arouse protagonists of the intellectual movement often known the astonishment of onlookers” (quoted in Daston and as the Scientific Revolution—increasingly understood Park 1998:190). Some 250 years later, around 1500, nature in a new way: as governed not by general habits there is evidence of commercial display; parents or or regularities, violable in both principle and practice, guardians of monstrous children took them from town but as governed by inalterable laws. This new invest- to town, showing them for money, and some cities ment in natural uniformity began to deprive monsters began to issue licenses or permits for spectacles of of their scientific interest and their appeal. They were this sort. seen increasingly as embarrassing mistakes that Over the course of the sixteenth and seventeenth marred the natural order and uniform beauty of the centuries, this practice became increasingly common. world. In a world where the physical norm—a concept Adult men and women displayed themselves in inns, pioneered by the Belgian statistician Adolphe Quételet taverns, and fairs, advertising their unusual appear- (1796–1874)—came quickly to be identified with the ances and abilities in broadsides and flyers, and ideal, people with unusual anatomies were recon- became the guests of princes and nobles. Petrus ceived as ugly, abnormal, even pathological. Gonsalvus, a native of the Canary Islands whose face By the nineteenth century, the fear of monsters as was covered with long, silky hair, was raised at the portents of divine wrath had gradually lost its hold, and court of Henri II of France and, together with his wife the reaction to monsters as abnormal, even repellent, and equally hairy children, was memorialized in con- coexisted with curiosity and fascination. The freak temporary portraits that emphasized his noble bearing shows that flourished from the mid-nineteenth century and exquisite attire. to the mid-twentieth century, of which the most famous This culture of display bespoke a different attitude example in the United States was that operated by P. T. toward monsters than the horror engendered by the Barnum, were similar to the displays of armless men, fear of divine wrath. Philosophers and popular writers giants, and hairy ladies at the fairs of seventeenth- and referred to people with unusual anatomies in terms of eighteenth-century Europe with respect to the crowds admiration and appreciation, describing them as signs they attracted and the diversity of reactions they inspired. of God’s marvelous creativity and unceasing power for The same might be said of some more recent daytime innovation; those who were lucky enough to view or television talk shows. For white, middle-class nineteenth- meet many such individuals—medical men, collectors century Americans, people with unusual anatomies— of broadsides, frequenters of fairs and taverns—prided many of them of exotic birth, like the “Siamese” themselves on their connoisseurship and their ability to conjoined twins Chang and Eng and the hairy Mexican make fine distinctions between the merely unusual and Indian Julia Pastrana, advertised as the “ugliest woman the absolutely unique. Like works of art, these special in the world”—evoked fascination with the truly differ- products of divine craftsmanship were collected, both ent and satisfaction with their own conformity to alive and dead, by rulers and wealthy elites. modern, “civilized” norms. By the second half of the seventeenth century, Perhaps the most dramatic change in attitudes scholars and medical men also were engaging in the toward people whose appearance challenged such intensive study and description of monsters as part of norms, however, came in the years after 1900, as these an effort to untangle the natural order of the world. people became increasingly subject to medical This effort was not new. Medieval and Renaissance scrutiny. Although medical men had long presented 1116———Montessori, Maria (1870–1952) themselves as experts on human anatomy, including Further Readings anatomical irregularities, they had never claimed to Daston, Lorraine and Katharine Park. 1998. Wonders and the be able to correct such irregularities—that was beyond Order of Nature. New York: Zone. their technical skill. Because monstrous people were Dreger, Alice Domurat. 2004. One of Us: Conjoined Twins and not treatable, however different they might appear from the Anatomical Basis of Identity. Cambridge, MA: Harvard others, they were not, by definition, ill. With new devel- University Press. Garland, Robert. 1995. The Eye of the Beholder: Deformity and opments in surgery, however—anesthesia, antisepsis, Disability in the Graeco-Roman World. Ithaca, NY: Cornell new imaging technologies—doctors not only began to University Press. medicalize such conditions, describing them in terms Paré, Ambroise. 1971. Des monstres et prodiges. Edited by Jean of medical pathology, they attempted to intervene sur- Céard. Geneva: Droz. gically to “fix” them. Intersexuals (long referred to as ———. 1982. On Monsters and Marvels. Translated by Janis L. “hermaphrodites”) had their genitals normalized, and Pallister. Chicago: University of Chicago Press. Thomson, Rosemarie Garland, ed. 1996. Freakery: Cultural conjoined twins were separated in infancy. More Spectacles of the Extraordinary Body. New York: New York recently, surgical and hormonal interventions have been University Press. deployed to normalize height as well. ———. 1997. Extraordinary Bodies: Figuring Physical In some cases, such interventions have met with dra- Disability in American Culture and Literature. New York: matic success, increasing mobility and social accep- Columbia University Press. tance. In others, the record is far more ambiguous, as in Websites the case of conjoined twins “sacrificed” in separation operations. There is no question, however, that the med- American Studies Crossroads Project, Disability Studies in the icalization of unusual anatomies has done little to lessen Humanities, http://www.georgetown.edu/crossroads/interests/ ds-hum/index.html their stigma. Not only have people with such anatomies Maryland Institute for Technology in the Humanities, http:// been reconfigured as victims and as patients—whether www.mith2.umd.edu or not they are subject to cure—but the unquestioned power of effective reconstructive and cosmetic surgical techniques has reduced the range of appearances ᨘ deemed socially acceptable, paradoxically enlarging the MONTESSORI, MARIA (1870–1952) ranks of people who see themselves, or are seen, as Italian physician and educator “monstrous,” despite their having anatomies that would have evoked little reaction—or even positive reaction— Maria Montessori was born in 1870 in Chiaravalla, in earlier periods. Thus, intersexuals are no longer seen Italy, and died in 1952 in the Netherlands. She is as marvelous emblems of divine fertility; rather, they are known as the founder of a pedagogical method specif- viewed as physical deviants to be fixed at birth. ically intended for children between the ages of 3 and In sum, neither the fear nor the fascination engen- 12 years. Montessori studied engineering science, dered by people with socially challenging appearances mathematics, physics, and medicine and became one has disappeared over the course of time. Rather, of the first female physicians in Italy in 1896. She was the fear and fascination have taken changing forms as also an active supporter of the international bourgeois the meanings associated with unusual anatomies have feminist movement. During her tenure at the psy- themselves changed. No longer seen as signs of divine chiatric clinic of the University of Rome, Montessori wrath, symbols of an admirable natural diversity, or developed an interest in disabled children. In 1899, emblems of an imperfect and exotic Other, monsters she and Giuseppe Montesano founded the Scuola are now interpreted in terms of pathology, dependent on Magistrale Ortofrenica, which was both an educa- the doctor’s extraordinary power to both harm and heal. tional institute for disabled children and a training institute for instructors. In 1898, Montessori gave —Katharine Park birth to their son Mario, who lived in a foster family See also Freak Show; Normality. until the age of 15. Moscow Theater of Mime and Gesture———1117

ᨘ Montessori was a lecturer of disability pedagogy MOON, WILLIAM (1818–1894) from 1900 to 1918 at the Regio Instituto Superiore British evangelist and blind activist Femminile di Magistero in Rome. In 1907, she founded the Casa dei Bambini in the working-class neigh- William Moon, an Englishman who was partially borhood of San Lorenzo in Rome. Her pedagogical sighted in childhood and blind in his teens, spent his convictions and stimuli for the development of her life in Christian evangelism and enabling blind people own didactic material were inspired by Jean Itard to read. In 1847, he developed an embossed script (1774–1838) and Edouard Séguin (1812–1880). Above based on Roman capitals that blind adults could learn to all, she relied on the concept of sensory-based instruc- read in a few days and began a monthly magazine using tion as a means for developing intellectual competence. the script. Moon’s script facilitated the integrated edu- With help of the so-called prepared environment, cation of blind children in many schools across Britain. the child should, allowing for the greatest possible One of his strategies was to teach sighted children to independence, foster his or her own development (the use the embossed material and then send them out to child’s own inner “building plan”). The didactic mater- find blind people whom they would teach to read or ial, which should be available once per group, serves as blind children whom they could bring to school. From a “polarization of attentiveness.” Further methodologi- the 1850s onward, the script was transferred to India, cal principles include the age-mixed grouping of China, Egypt, Australia, and West Africa by missionar- children and instructors’ stepping back as much as ies who included blind children in the schools they possible to facilitate children’s self-education. established and taught blind adults at home. Many of Montessori traveled extensively and presented her Moon’s home teachers were blind men who walked work—with the support of her son—in order to dissem- great distances to serve other blind people. By 1880, inate her ideas. In addition, the worldwide Foundation Moon’s annual report claimed to have reading material for Instruction and Apprenticeship sponsored the publi- in 194 languages. Moon’s script was the first reading cation of her pedagogy. In 1928, the Regia Scuola system for the blind to be widely adopted across the Magistrale di Metodo Montessori was established in world, but was costly to print. It was overtaken in the Rome; in 1929, the International Montessori Associa- late nineteenth century by Braille, which was cheaper tion emerged in (this organization was later and could be produced by blind individuals for them- headquartered in Amsterdam). Maria Montessori was selves. Moon’s system is still used in Britain by people nominated for the Nobel Peace Prize three times. whose fingertips lack the sensitivity to use Braille. —Vera Moser —Kumur B. Selim

See also Jean Marc Gaspard Itard; Edouard Onesimus Séguin. See also Agnes Gutzlaff; C. Colden Hoffman; Jane Leupolt.

Further Readings Further Readings Royal National Institute for the Blind. 1985. Reading by Touch Montessori, Maria. 1913. Selbsttätige Erziehung im frühen with the Moon Method. London: Royal National Institute for Kindesalter (Automatic Education in Early Childhood). the Blind. Stuttgart: Hoffmann. (Originally published in 1909 as Il Rutherfurd, J. 1898. William Moon, LL.D., F.R.G.S., F.S.A, and metodo della pedagogia scientifica applicata all’educazione His Work for the Blind. London: Hodder & Stoughton. infantile.) ———. 1966. The Secret of Childhood. Translated by M. Joseph Costelloe. Notre Dame, IN: Fides. Oswald, Paul and Günter Schulz-Benesch. 1967. Grundgedanken ᨘ MOSCOW THEATER der Montessori-Pädagogik (Fundamentals of Montessori Pedagogy). Freiburg, Germany: Herder. OF MIME AND GESTURE Schwegman, Marjan. 2000. Maria Montessori. Kind ihrer Zeit— Frau von Welt. (Maria Montessori: Child of Her Time— Founded in 1962, the Moscow Theater of Mime and Woman of the World). Weinheim, Germany: Beltz. Gesture (Moskovskii teatr mimiki I zhesta) was the 1118———Multiple Sclerosis first professional deaf theater in the world. The theater MS most commonly affects women of childbearing has been in continuous operation for more than 40 age and of northern European descent. The best med- years and has staged more than 100 classic and ical prognosis is in young women who first present modern plays by Russian playwrights and playwrights with sensory symptoms and whose disease is relapsing- of other nationalities. It has won many Russian and remitting (i.e., periods of exacerbation alternate with international theater contests and has toured in many periods of improvement) rather than chronically countries. progressive. Pregnancy does not affect long-term out- comes. MS does not alter lifespan. Psychological stress —Anna Komarova and is suspected to exacerbate symptom severity. Victor Palenny Pharmacotherapy for MS includes medications to See also National Theatre of the Deaf (United States). manage spasticity, pain, bladder dysfunction, sexual dysfunction, and fatigue, as well as corticosteroids to reduce exacerbation severity. In the 1990s, chemicals ᨘ MOVEMENT OF DISABLED that modulate the immune system (immunomodula- tors), thought to alter the course of MS, were devel- PEOPLE, GERMANY oped. Immunomodulators are used widely today, See Advocacy Movements: Germany despite possible debilitating side effects. On the hori- zon are neuroprotective agents, stem cell transplants, and gene therapies. The course of MS is highly variable. MS can result ᨘ MULTIPLE SCLEROSIS in a range of disability, from nearly none to the inabil- ity to write, speak, and walk. Physical therapy, occu- Multiple sclerosis (MS) is the most common demyeli- pational therapy, adaptive devices for ambulation and nating disease of the central nervous system, named function in the home and workplace, and psychologi- for focal scars in the brain, spinal cord, and optic cal and social supports are critical components of nerve. Myelin insulates the impulse-transmitting overall care. extensions (axons) from nerve cells and promotes fast As young adults adjust to new careers and families, transmission of electrical impulses. Demyelination those with MS must also adjust to loss of body func- results in slowing of impulse conduction. Clinical tion and the social stigma and losses of self-esteem, manifestations include sensory, motor, visual, gait, job opportunities, family time, and independence that balance, bladder, speech, swallowing, sexual, mood, come with it. Unpredictability of disease course and cognitive disturbances, as well as spasticity, makes acceptance and coping particularly difficult, weakness, and fatigue. Ultimately, demyelination can both for the individual with MS and for the primary result in axon loss, causing permanent damage. caregiver. Community support networks can help Diagnosis of MS is based on clinical presentation, individuals with MS and their families adapt to dis- nerve transmission, spinal fluid, and imaging studies. ruptions in social, family, and work life, and can help Jean Martin Charcot provided the first clinical- to maximize both functional status and quality of life. histological description of MS in 1868. Since then, In recent years, the Internet has increased the accessi- theories regarding the etiology of MS have included bility of individualized information on MS, clinical abnormal sweat suppression, toxins, poor circulation, trials, and support networks. allergy, and viruses. The prevailing theory today is Currently, there is no cure for MS. Its etiology— that MS is an autoimmune disease—that is, the body and whether more than one etiology could result in the attacks its own nervous system—that may occur pref- clinical picture characterized as “MS”—has not been erentially in genetically susceptible people. Immune definitively determined. In the future, increased function in MS is studied in animals with experimen- understanding of interactions among genes, immunity, tal autoimmune encephalomyelitis. central nervous system damage, clinical manifestations Muscular Dystrophy———1119 of disease, and psychosocial well-being will allow understanding of disability from a tragic encounter to medical practitioners to provide maximally effective one of profound intellectual value. His work moves individualized treatment programs. disability out beyond an individual experience and into a profound analysis of societal and historical —Dorothy Weiss investments in bodies that exist outside of aesthetic and functional norms. Ultimately, Murphy’s work Further Readings transforms the disabled body from a socially Bowling, Allen C. 2001. Alternative Medicine and Multiple bequeathed silence into a vehicle of social exposé. Sclerosis. New York: Demos. Joy, Janet E. and Richard B. Johnston Jr., eds. 2001. Multiple —David T. Mitchell Sclerosis: Current Status and Strategies for the Future. Washington, DC: National Academy Press. See also Anthropology; Autobiography. Kalb, Rosalind C. and Labe C. Scheinberg. 1992. Multiple Sclerosis and the Family. New York: Demos. Further Readings Murphy, Robert F. 1987. The Body Silent. New York: W. W. Norton. Websites Multiple Sclerosis International Federation, http://www.msif.org

ᨘ MUSCULAR DYSTROPHY ᨘ MURPHY, ROBERT FRANCIS The neuromuscular diseases (NMDs) are disorders of (1924–1990) muscle or of the peripheral nervous system that cause American anthropologist and disability scholar generalized muscle weakness or paralysis but either mildly affect or completely spare the brain. The weak- Robert Murphy was one of the most influential schol- ness most commonly results in inability to achieve or ars in the field of disability studies. His work proved loss of independent ambulation, scoliosis (childhood critical to the disciplinary beginnings of disability onset), respiratory complications (which are generally studies as a field that challenged the medicalization of preventable), and occasionally heart failure. human differences as pathology. In 1976, at the age of Before the French physician N. Andry’s attribution 52, Murphy was diagnosed with an inoperable spinal of NMDs to muscle pathology in 1743, it was believed tumor and later became increasingly paralyzed. At the that they were caused by bony lesions. In 1853, the time, he was already an established anthropologist at French physicians Duchenne and his colleague Jean Columbia University and had spent many years (along Cruveilhier distinguished between generalized weak- with his wife, Yolanda, who was also an anthropolo- ness due to muscle pathology and “paralysis” denoting gist) in the Amazon among the indigenous peoples. muscle dysfunction on the basis of neurological dis- His most significant contribution to disability scholar- ease. Duchenne described these disorders as resulting ship is the autobiographical work titled The Body from febrile illnesses that affect the spinal cord (later Silent, in which Murphy takes up his experience with called poliomyelitis), from syphilis, and from heavy disability outside of more traditional narrative modes metal toxins, and both paralyses and muscle diseases such as the first-person overcoming story. In doing so, (from “impaired circulation or nutrition”) could lead to he transforms disability into a journey of cultural dis- fatty transformation of muscle. The most common and covery. As Murphy himself characterizes his efforts, most rapidly progressive NMD has become known as “Since it is the duty of all anthropologists to report on Duchenne muscular dystrophy. However, it was not their travels...this is my accounting.” The Body until 1868 that Duchenne distinguished muscular dys- Silent presents Murphy’s accounting with the zeal of a trophy, primarily a muscle disorder, from other NMDs. field anthropologist investigating an unknown land- This was 16 years after the English physician Meryon’s scape or culture. Murphy thus successfully shifts the (1852) classical description of this condition and 1120———Muscular Dystrophy

32 years after its initial description in Italy (Conte and mechanically displace respiratory muscles. Negative Gioja 1836). pressure applied to the airway during expiration or Meryon (1852) described how a patient died at coughing assists the expiratory muscles as forced 16 years of age from acute respiratory failure during a exsufflation just as positive pressure applied to the air- febrile episode with “profuse secretion of mucus from way during inhalation (noninvasive ventilation through the trachea and larynx” (quoted in Archibald and mouthpieces or nasal interfaces) assists the inspiratory Vignos 1959). All NMDs cause death by respiratory muscles (see Bach 2002b). Despite the extraordinary complications due to weakness of inspiratory, expiratory, efficacy of respiratory muscle aids in preventing hos- and throat (bulbar-innervated) muscles. Inspiratory pitalizations, resort to tracheotomy, and death (see muscle weakness can result in coma and death from Gomez-Merino and Bach 2002; Bach et al. 2002; Bach carbon dioxide narcosis. Expiratory (essentially 2002a), respiratory complications continue to cause abdominal and chest) muscle weakness results in pneu- death for the majority of patients with NMDs (Bach monia and respiratory failure due to airway secretion 2002b). This is because of a general lack of awareness encumberment from an ineffective cough. Bulbar mus- of the availability of these aids and the medical com- cle dysfunction results in death from massive aspiration munity’s low level of interest in helping patients with of airway secretions; however, this is seen only in rare conditions that cause severe disabilities. advanced bulbar amyotrophic lateral sclerosis (Lou —John R. Bach Gehrig’s disease) and virtually never in muscular dys- trophy or other NMDs. In the case of myopathic disor- ders, heart muscle weakness (cardiomyopathy) can also Further Readings result in death. Andry, N. 1743. Orthopaedia; Or the Art of Correcting and The inability to find very effective medical treat- Preventing Deformities in Children. London: A. Mielar. ments or cures for any of these conditions and the fail- Archibald, D. C. and P. J. Vignos Jr. 1959. “A Study of ure to appreciate how respiratory muscles can be aided Contractures in Muscular Dystrophy.” Archives of Physical Medicine and Rehabilitation has resulted in therapeutic nihilism (see Dubowitz 40:150–157. Bach, J. R. 2002a. “Amyotrophic Lateral Sclerosis: Prolongation 1977). However, effective means of preventing or of Life by Noninvasive Respiratory Aids.” Chest 122:92–98. limiting musculotendinous contractures, prolonging ———, ed. 2002b. Noninvasive Mechanical Ventilation. ambulation, preventing scoliosis, and increasing limb Philadelphia: Hanley & Belfus. function are now available; the use of specially designed ———. 2004. The Management of Patients with Neuromuscular robotics and computers can prevent morbidity and Disease. Philadelphia: Hanley & Belfus. death and help to maintain a good quality of life for Bach, J. R., J. S. Baird, D. Plosky, J. Nevado, and B. Weaver. 2002. “Spinal Muscular Atrophy Type 1: Management and individuals with NMDs (see Bach 2004). The use of Outcomes.” Pediatric Pulmonology 34:16–22. inspiratory and expiratory muscle aids can consistently Conte, G. and L. Gioja. 1836. “Scrofola del sistema muscolare.” and indefinitely prevent death from respiratory causes Annali Clinici dell’Ospedale degli Incurabli di Napole 2:66–79. (see Bach 2002b), and effective regimens of cardiac Cruveilhier, J. 1853. “Sur la paralysie musculaire, progressive, medications have been developed that can prolong atrophique.” Bulletin de l’Académie de Médicine 18:490–502, effective cardiac function for patients with myopathies 546–584. Dubowitz, V. 1977. “Management of Muscular Dystrophy in (see Ishikawa and Bach 2004). 1977.” Israel Journal of Medical Science 13:235–238. Respiratory muscle aids are devices and techniques Gomez-Merino, E. and J. R. Bach. 2002. “Duchenne Muscular that involve the manual or mechanical application of Dystrophy: Prolongation of Life by Noninvasive Respiratory forces to the body or intermittent pressure changes to Muscle Aids.” American Journal of Physical Medicine and the airway to assist inspiratory or expiratory muscle Rehabilitation 81:411–415. function. The devices that act on the body include Ishikawa,Y. and J. R. Bach. 2004. “Cardiac Management.” In J. R. Bach, The Management of Patients with Neuromuscular body ventilators that create atmospheric pressure Disease. Philadelphia: Hanley & Belfus. changes around the thorax and abdomen and exsuffla- Meryon, E. 1852. “On Granular or Fatty Degeneration of the Vol- tion devices that apply force directly to the body to untary Muscles.” MedicoChirurgical Transactions 35:73–85. Music——1121

ᨘ MUSIC Perlman walks with crutches and performs seated; a colleague carries his instrument onstage. Recent Ethnomusicologists have long understood that music improvements in concert stage/backstage accessibility can be the focus of highly autonomous cultural units are said to owe much to Perlman’s prominence. whose rules and rituals—including their constructions The most famous disabled classical musician was of (dis)ability—may vary considerably from those of composer Ludwig van Beethoven (1770–1827). their host communities. What constitutes disability or Gradual, ultimately profound hearing loss forced the impairment may differ greatly between a musical composer to abandon instrumental performance and “world” and its extramusical environs. For example, conducting. Contemporaneous biographical accounts in Japan and Ukraine of bygone eras, blindness was take notice of his use of the adaptive technologies of his far from disabling for professional minstrels. In con- day, ear trumpets and conversation books. Many of the trast, deafness, while regarded as a cultural identity latter have been preserved, providing an exceptional rather than a disability by the Deaf, renders partici- biographical reference. Beethoven’s compositional pation in music (“musicking”) difficult. Nonnor- prowess was surely undiminished by his deafness. mate hand function typically regarded as minimally Whether some of his stylistic preferences were shaped significant—left-handedness, small hands, single- by his hearing loss is a matter of speculation. finger mobility impairment (such as that experienced Contemporary Scottish percussionist Evelyn by composer Robert Schumann)—may be disabling Glennie also has significant hearing loss. She eschews for musicians. Addiction, epistemologically complex disability/Deaf identity. Her public statements could as regards disability, becomes exponentially more be interpreted as anti–Deaf culture; her official web- challenging taxonomically in music, where substance site (http://www.evelyn.co.uk) is inaccessible. She is a abuse may be regarded as a rite of passage, identifica- supporter of the Alexander Graham Bell Foundation, tion badge, or hearing (that is, musicking) aid. widely perceived as opposed to Deaf culture and a Mobility impairments mandate either accommoda- major advocate of orality and cochlear implants. tions to facilitate normate musicking or at least non- The late Canadian pianist Glenn Gould (1930–1981) normate strategizing. While challenges to musicking was noted for his musical and personal eccentricities with a disability are, ultimately, socially constructed, and abandonment of concertizing in favor of an exclu- they may be formidable. Many remain unaddressed. sively recording career. His hypochondria and psycho- logical dependence on prescription medications, which CLASSICAL MUSIC Gould obtained in great and often contraindicated vari- ety and in large quantities by going to several physi- Perhaps Western classical music’s greatest advocate cians who were unaware of what others had prescribed, for disability accommodation was pianist Paul has been reliably documented. It is widely and excep- Wittgenstein. After losing his right arm in World War I, tionally convincingly speculated that Gould had Wittgenstein commissioned five one-hand piano Asperger’s syndrome, a high-functioning condition on works; the concertos by Ravel and Prokofiev became the autistic spectrum and a diagnosis virtually unknown standard repertoire, mostly for two-handed pianists. at the time of the pianist’s death. Whatever Gould’s That compositions originally intended to accommodate cognitive differences and whatever the affect on his Wittgenstein’s disability have entered the twentieth- health and quality of life, it is precisely the iconoclasm century canon—few modern concertos have— of his music making—doubtless related to his unique exemplifies universal design principles. cognitive makeup—that remains highly cherished. Ambulatory impairment barely impedes classical musicking, significantly affecting only instruments POPULAR MUSIC AND JAZZ with pedals—keyboards and harp. Mobility-impaired conductors James DePriest and Jeffrey Tate use high Probably the most disabling aspect of Americanist stools on the podium. Renowned violinist Itzhak global popular culture is the insistence that artists be 1122———Music exceptionally physically attractive by normate 18, Reinhardt lost most of the use of the fourth and standards, particularly in youth popular music, where fifth fingers of his left hand. (The left hand uses fin- prominent figures with visible disabilities are virtually gers 2–5 to fret the strings, often simultaneously, unknown, with such minor exceptions as late-disabled, when chords are played.) Even less able than Parlan to established figures like Curtis Mayfield and Teddy play with the conventional technique of his instru- Pendergrass, whose careers certainly declined postdis- ment, Reinhardt is known for having invented the sin- ability. (Hidden conditions such as Karen Carpenter’s gle-string jazz guitar solo and revered as one of the anorexia and the substance addictions of Jimi greatest jazz guitarists of all time. Hendrix, Janis Joplin, Jim Morrison, Kurt Cobain, and Singer Jimmy Scott, Billie Holiday’s favorite, has others are common.) Kallmann’s syndrome, a hereditary hormonal condi- More (under)class conscious musicians have been tion that inhibits growth and prevents the male voice somewhat more accepting of artists with apparent from deepening at puberty. Known for his work with disabilities. (Alt-)country has produced prominent Lionel Hampton, his newly revived career is currently singers whose impairments, although obvious, do not at its peak, with international tours, recordings, and a impede their performance: Vic Chesnutt (paraplegia) recent biography. and Mel Tillis (speech disfluency). Important jazz musicians have also been notice- MUTUAL ASSISTANCE AMONG ably, although not musically, disabled. They include MUSICIANS WITH DISABILITIES Benny Goodman band trumpeter Wingy Manone (amputee), pianist Michel Petrucciani (small stature, The notable achievements of individual musicians brittle boned), and blues singer-guitarist Brownie with disabilities do not justify the lack of technologi- McGhee (mobility impaired). Others, including cal and other accommodations that would enable Charles Mingus (ALS) and Ella Fitzgerald (double more universal musical participation. Organizations amputee, owing to diabetes), were late disabled and of disabled musicians in Canada and the United States continued to work. provide important models. Several jazz artists’ physical impairments are incor- Founded in 1988, the Vancouver Adapted Music porated seamlessly into their uniquely virtuosic styles. Society (VAMS) is devoted to facilitating, through the Pianist Horace Parlan, well-known for his work with development and commissioning of highly sophisti- Charles Mingus and also as a sideman for jazz legends cated technologies, musicking by people with “signif- Dexter Gordon, Archie Shepp, and Rahsaan Roland icant disabilities,” mostly mobility impairments. Kirk, had polio that left his right side affected, in par- Much of the new technology emphasizes composition ticular his right hand, the fourth and fifth fingers of and sound synthesis, although real-time performance which cannot play at all. Parlan was fortunate that at aids have also been developed. VAMS views music age eight, piano teacher Mary Alston encouraged him making as inherently valuable rather than therapeutic to develop a uniquely personal technique rather than or rehabilitative. Program participants tend to be avo- dismissing his musical aspirations. It is interesting to cational, rather than professional, musicians. In 1993, compare the careers of classical pianist Wittgenstein the organization’s showcase band, Spinal Chord, and jazz pianist Parlan. Wittgenstein’s disability com- recorded an all-original CD titled Why Be Normal? pelled him to commission a whole new one-handed Founded in 1986, the Long Island–based Coalition literature, which, however, provided him only a minus- of Disabled Musicians (CDM) is concerned primarily cule repertoire. Parlan, working in an idiom whose with professional music making: Several members essence is flexibility and improvisation, knew no such have acquired workplace disabilities that mandated limits. He is able to play with his unique technique the career changes. CDM advocates and disseminates entire jazz repertoire alongside legendary players. information about adaptive technologies, typically Even more remarkable than Parlan was Roma simpler if no less effective than those developed at guitarist Django Reinhardt. Badly burned at the age of VAMS, as well as nontechnological accommodations Music and Blindness———1123 such as “tag-team performance”—that is, the use of on notation creates difficulties for blind musicians, several musicians in alternation as a strategy for dealing and conductors present another problem. Still, notable with fatigue issues. Like VAMS, CDM has a featured blind classical musicians include composer-organists band, Range of Motion. Francesco Landini, Louis Vierne, and Jean Langlais, Organizations like VAMS and CDM have tremen- and composer-pianist Joaquin Rodrigo. Louis Braille, dous value for the advancement of music making by inventor of tactile writing and music notation for the people with disabilities. In particular, the development blind, was an accomplished organist. of technologies for composition and sound synthesis and the emphasis of real-time performance address the FRANCE needs of potential musicians with mobility impairments. Pierre-François-Victor Foucault (1797–1871) was a —Alex J. Lubet blind professional hornist in postrevolutionary Paris and See also Music and Blindness. husband of blind author Thérèse-Adèle Husson (1803–1831). Foucault and Husson were partially sup- Further Readings ported by Quinze-Vingts hospice for the blind, spon- Brandfonbrener, Alice. 2000. “Artists with Disabilities.” Medical sored by French royalty since the thirteenth century. An Problems of Performing Artists 15(2): 1–2. 1825 census shows that 34 of 225 hospice members were CBC Radio. 2000, June 8. “Glenn Gould May Have Had Form of professional musicians, including 9 women, most of Autism.” Arts Report. Retrieved (http://www.infoculture.cbc Quinze-Vingts’s working blind. While music was con- .ca/archives/musop/musop_06082000_glenngould.phtml). sidered a suitable occupation for the blind, Foucault’s Fantasy, Inc. 2002. “Jimmy Scott biography.” Retrieved April 20, 2005 (http://www.fantasyjazz.com/html/scottbio.html). colleagues defied hospice authority by serving as the Ostwald, Peter. 1995. “Glenn Gould as Patient.” Glenn Gould house orchestra for the questionably reputed Café des Archive, National Library of Canada. Retrieved April 22, Aveugles (Blind People’s Café), a manifestation of the 2005 (http://www.collectionscanada.ca/glenngould/m23- tendency for the blind of Paris “to form a support net- 502.17-e.html). work beyond the reach of an institution” (Weygand and Wimmer, Bill. 2002. “Unsung Hero: Pianist Horace Parlan Kudlick 2001:140), a transgression likely disapproved Created Own Technique.” Retrieved April 22, 2005, from Berman Music Foundation Jazz website (http://wwwberman- by hospice administrators. Braille entered Quinze-Vingts musicfoundation.org/hprlnus.htm). within a year of Foucault and Husson’s departure.

Websites UKRAINE Coalition for Disabled Musicians, http://www.disabled-musicians .org Since at least the fifteenth century, Ukraine hosted Evelyn Glennie Website, http://www.evelyn.co.uk a folk bardic tradition, with singers accompanying Vancouver Adapted Music Society, http://www.reachdisability themselves on kobza (a lute that later evolved into the .org/vams bandura) or lira (hurdy-gurdy). Blindness was obliga- tory for minstrels, and minstrelsy was reserved as a profession for the blind; artistry was a secondary con- ᨘ MUSIC AND BLINDNESS sideration. Evidently, blind female minstrels sang a cappella and sang a repertoire different from that sung Blindness usually presents no obstacle to music by men. Musical instruction was nearly universal for making; indeed, the blind are often regarded as excep- the blind, perhaps for all otherwise unable to work. tionally musical. Nations have even reserved classes Minstrels were associated with the Orthodox Church, of musical employment for the blind, and blind musi- but their social position was ambiguous; they were cians have often formed unions. respected as workers and compensated as beggars. Blind musicians flourish where musical praxis is Minstrels’ “remarkably democratic and egalitarian” predominantly oral. Western classical music’s reliance guilds trained, protected, and policed the profession 1124———Music and Blindness

(Kononenko 1998:xii). Apprenticeships included graded titles, divided into sixteen ranks” (Matisoff musical training as well as training in life/social skills and 1978:43). Beyond direct government control, the a secret language. Most guild members owned homes and guild assumed the authority of “a country of the raised families. Unlike most peasants, they traveled blind” (Matisoff 1978:43). To-do-za was abolished in extensively. Minstrels hired sighted child guides, often 1871, early in the modernist, pro-Western Meiji era. with disabilities, who typically later became instrument The unionization of blind musicians in Ukraine and builders, a skill acquired from their blind masters. Japan implied broad societal consensus that certain In 1939, Joseph Stalin convened a minstrel confer- categories of musical employment were apt and thus ence in the Ukraine. Fearing nationalism in minstrels’ reserved for the blind, owing as much (or more) to lyrics, he had all in attendance shot, nearly ending the extraordinary ability as to disability. tradition. UNITED STATES JAPAN American democracy and market economics render Japan’s biwa ho-shi—blind “lute-priests”—bear impossible the existence of exclusivist guilds of blind remarkable parallels to the minstrels of Ukraine. Even musicians such as those established in Japan and more than in Ukraine, in Japan the art and patronage Ukraine. The principal achievements of blind of mendicant bards were religion based, with Indian American musicians have been in forms of music with and Chinese Buddhist antecedents perhaps as early as African American roots (although some notable blind the sixth century BCE. The repertoire of the biwa ho-shi exponents of these genres are neither American nor syncretized Buddhism, Shinto, earlier local folk reli- African descended). This is likely owing to the pre- gion, historical narrative, and popular culture. vailing orality of African musical cultures and African The principal function of the biwa ho-shi evolved American aesthetic preference for deeply personal- from spirituality to entertainment. Japanese attitudes ized interpretation, often including improvisation. toward blindness were complex and ambivalent, com- One ramification of the high value placed on individ- bining ancient beliefs that the blind have powers of uality is that artists shape their interpretations around divination and “extraordinary ability in communicat- whatever idiosyncratic musical techniques emanate ing with invisible, yet very powerful, natural forces” from their bodies, including vocal range, tone color, (Matisoff 1978:30) and the Buddhist association of level of virtuosity, and the shaping force of a physical disability with negative karma. Disability was consid- disability. African American music has produced dis- ered an opportunity to accumulate merit for future tinguished musicians with a variety of impairments, incarnations, fueling numerous morality tales in art including blindness. and folk genres. Legendary biwa ho-shi Semimaru has Blindness has been particularly associated with the been described as “an archetype of the performing arts blues, especially older, acoustic varieties, the institu- in Japan...a virtual ‘patron saint’” (Matisoff tion of the blind bluesman (blind blues musicians are 1978:6), inspiring stage works for Noh, Bunraku apparently exclusively male) having nearly vanished (puppet theater), Kabuki, and Buto-h. Semimaru’s sta- in electric blues bands. Best known include Blind tus rose from local Shinto deity to bodhisattva, Lemon Jefferson, Blind Blake, Blind Willie McTell, Buddha incarnate. The power that the biwa ho-shi had Blind (or Reverend) Gary Davis, and Sonny Terry— over important popular narratives advanced his social the only one of this group whose sobriquet does not position. include “Blind.” Although many acoustic bluesmen of In the fourteenth century, biwa ho-shi Akashi this era were not blind, playing the blues appears to Kakuichi founded To-do-za (the Proper Path Guild), have been recognized as a suitable calling for blind which was eventually recognized by the government musicians. Some, like Blind Lemon Jefferson, as a regulatory agency for blind lutenists. To-do-za achieved considerable financial security and social classified members “according to a system of four status from their music making. Mutation Theory——1125

Although jazz makes greater use of notation than Global Performing Arts Consortium. n.d. “The To-do-za and the does blues, its prevailing orality/improvisation has Kokufû Ongaku Kai (Association for National Music).” made it an expressive medium for numerous blind Retrieved April 20, 2005 (http://www.glopac.org/Jparc/ HEIKYOKU/a-of-japanese.html). musicians (not all African American), some of whom Husson, Thérèse-Adèle. 2001. Reflections: The Life and Writings are acknowledged masters. They include pianists Art of a Young Blind Woman in Post-Revolutionary France. Tatum, Marcus Roberts, and George Shearing; pianist- Translated by Catherine J. Kudlick and Zina Weygand. vocalists Ray Charles and Diane Schuur; and saxo- New York: New York University Press. phonists Rahsaan Roland Kirk, Lenny Tristano, and Kononenko, Natalie. 1998. Ukrainian Minstrels: And the Blind Eric Kloss. Among Motown’s most illustrious per- Shall Sing. London: M. E. Sharpe. Matisoff, Susan. 1978. The Legend of Semimaru, Blind Musician formers and composers is Kennedy Center honoree of Japan. New York: Columbia University Press. Stevie Wonder. One of the best-known gospel groups Miles, M. 2000. “Disability on a Different Model: Glimpses of an in the United States is the Blind Boys of Alabama. Asian Heritage.” Disability & Society 15:603–618. Somewhat more removed from African American roots National Arts Council of South Africa. n.d. “Performing Arts are folk musician Doc Watson and Latino vocalist- Companies Granted Interim Funding.” Retrieved (http:// guitarist José Feliciano. Harder to characterize stylisti- www.nac.org.za/funding2.htm). Peruvian Harp and Mandolin: The Blind Street Musicians of cally and largely forgotten musically but vital to Cuzco (recording, CD). 1996. Chapel Hill, NC: Music of the disability history is composer-pianist “Blind Tom” World. Bethune (1849–1908), whose life is chronicled in three Royal New Zealand Foundation of the Blind. 2001. “A Unique volumes by Geneva Southall (1979, 1983, 2002). Music Festival.” In 2000/2001 Annual Report. Retrieved (http://www.rnzfb.org.nz/Annual2001/music_festival.html). ———. 2002, June 21. “New Music Programme for RNZFB Peer ELSEWHERE Support.” Retrieved (http://www.rnzfb.org.nz/Media/media releases.html). Since the 1930s, the Royal New Zealand Foundation Southall, Geneva Handy. 1979. Blind Tom: The Post-Civil War of the Blind has operated a program of music educa- Enslavement of a Black Musical Genius. Minneapolis, MN: tion and performances that has its origins in the pre- Challenge Productions. ———. 1983. The Continuing Enslavement of Blind Tom, the Black mainstreaming residential school system. A tradition Pianist-Composer. Minneapolis: Challenge Productions. of blind mendicant street ensembles, reminiscent ———. 2002. Blind Tom, the Black Pianist Composer of Japan and Ukraine, resides in Cuzco, Peru. The (1849–1908): Continually Enslaved. Lanham, MD: Rowman award-winning, extensively toured Light and Hope & Littlefield. Orchestra of Cairo, made up entirely of women, is Verein zur Förderung der Blindenbildung (Society for Promoting the world’s only blind symphony orchestra. The South the Education of Blind Persons). 2000. “Braille.” Retrieved April 20, 2005 (http://www.vzfb.de/text/braille.asp?lang=e). African Blind Musicians Association, which receives Weygand, Zina and Catherine J. Kudlick. 2001. “Reflections on a federal funding, performed at that nation’s South Manuscript, a Life, and a World.” Pp. 75–141 in Thérèse- African Music Week in 2002. The “blind-musicians” Adèle Husson, Reflections: The Life and Writings of a Young Listserv (blind-musicians-subscribe@yahoogroups Blind Woman in Post-Revolutionary France, translated .com) has worldwide subscribership. by Catherine J. Kudlick and Zina Weygand. New York: Organizations of blind musicians have existed for New York University Press. centuries on nearly every continent. Blind leadership appears to be the rule in such organizations. ᨘ —Alex J. Lubet MUTATION THEORY

See also Music. Mutation theory joined two seemingly opposed tradi- tions of evolutionary thought at the beginning of the Further Readings twentieth century. First, its practitioners accepted the “Blind Egyptian Orchestra Bewitches World It Cannot See.” 1997, primary contention of saltationist theory, which January 7. Egyptian Gazette. argues that new species are not formed, as Darwinism 1126———Mutation Theory holds, through the gradual accumulation of variation variations over time, de Vries’s mutation theory over vast epochs, but instead are produced during sud- insisted that no such gaps in the genealogical trees den and unexpected shifts in the constitution of ele- of organisms existed. Thus, what appeared to be mental species (a process referred to as sports). Second, absences in the fossil record could be marshaled as unlike saltationists, who argue that some organismic evidence in favor of a Mendelian and saltationist- variations are inherently undesirable, the first mutation- based theory of evolution. ists tended to hold the stricter Darwinian line that all Mutationist theories developed after de Vries’s work, differentiation is for the good of the organism/species. such as ’s (1933) “hopeful mon- This argument was premised on the belief that more sters” and Gould and Eldredge’s (1977) “punctuated variation provides better opportunities for adaptation to equilibrium” theories, not only remained faithful to the a variable environment. This second emphasis has often saltationist basis for new species formation but also escaped the reasoning of evolutionary theorists, many championed de Vries’s devotion to the pure Darwinian of whom have appeared to be perplexed that mutation- belief that all variation proves beneficial, including ists have claimed a Darwinian lineage (see Gould above and below the organismic level. In doing so, 2003:443). This important dovetailing of seemingly mutationist theories have recognized alternative, viable antithetical traditions made mutation theory one of the organismic formations (often labeled “disabilities” at vanguard movements in twentieth-century evolutionary the human level) as examples of the creative force of and, ultimately, genetic theory. new species coming into existence through mutation. The first self-acknowledged theorist of mutation This interpretation flies in the face of eugenicist—and was the Dutch botanist Hugo de Vries. In his break- geneticist—assertions that some mutations are mon- through two-volume work The Mutation Theory (Die strosities or organismic abominations. Those who have Mutation Theorie), de Vries (1909) stubbornly taken up this stance in favor of productive readings of insisted that he was first and foremost a Darwinian in mutation have been readily critiqued by a discourse that spite of the fact that mutation functions as an expres- remains faithful to its investment in designating some sion of what the eugenicist Sir Francis Galton called organismic expressions “unnatural.” sports. De Vries held that new species arrive suddenly Rather than try to settle this dispute of more than and without prior precedent through the process of 100 years’ duration here, we need to ask this question: mutation, which he defined as “the change of one Why are efforts to embrace rather than malign the species into another [due to the formation of] a new existence of recurrent forms of mutation so routinely center of analogous variations” (pp. 66–67). Rather banished from the theoretical canon of evolutionary than simply argue that species are discontinuous from and genetic traditions? each other—as in the case of neo-Lamarckism— —David T. Mitchell mutation theory originated the idea that variations themselves are discontinuous, as in the cases of See also Charles Darwin; Evolutionary Theory. “dwarfism,” “giantism,” and “albinism.” In the O. Lamarckiana species of plant that de Vries studied, Further Readings these new species came into existence fully formed de Vries, Hugo. 1909. The Mutation Theory: Experiments and and viable while lacking all defining characteristics Observations on the Origin of the Species in the Vegetable of the parent generation. Thus, de Vries’s analysis Kingdom. Translated by J. B. Farmer & A. D. Darbishire. focused on the creative force of discontinuity as a New York: Kraus Reprint. prime explanation for the origins of new species. This Goldschmidt, Richard. 1933. “Some Aspects of Evolution.” argument attempted to address a key lack in Darwinian Science 78:539–547. The Structure of Evolutionary Theory. analysis with respect to the incompleteness of the Gould, Stephen Jay. 2003. Cambridge, MA: Harvard University Press. fossil record. Rather than insist that knowledge of Gould, Stephen Jay and Niles Eldredge. 1977. “Punctuated the fossil record is insufficient to identify transitional Equilibria: The Tempo and Mode of Evolution Reconsidered.” stages in the gradual accumulation of incremental Paleobiology 3:115–151. Myofascial Pain———1127

ᨘ MUWAFFAK AD-DIN that are genetic and the bulk of MG that is acquired and caused by the body’s own immune system attack- MUZAFFAR (1149–1226) ing itself (autoimmune). The autoimmune conditions Egyptian philologist and poet are divided into those that possess measurable levels of Muwaffak ad-Din Muzaffar was a blind Egyptian an antibody to a substance that allows communication philologist and poet. Ibn Khallikan remarked that between nerves and muscles (acetylcholine receptor, Muzaffar’s treatise on prosody “testifies, by its excel- or AChR) and a smaller group that does not. The latter lence, the acute intelligence of the author.” He quoted includes those MG patients who have antibodies to a a little of Muzaffar’s verse, in which the poet com- chemical critical to normal muscle function (MuSK). mented, rather wearily, on how strange sighted people General treatment measures include rest, high- found it that he could be in love: “You are in love, and potassium diet, and avoidance of infections and drugs yet you are blind! You love a dark-eyed nymph with that exacerbate MG. Except for some of the congenital rosy lips, yet you never saw the charms of her person; myasthenic syndromes, drugs that help overcome the you cannot then say that they captivated your imagina- diminished communication between nerves and muscles tion.” In a later era, the puzzled questioners might have (anticholinesterases) are usually effective for temporary listened to the radio and had the experience of falling treatment of MG symptoms. Short-term immunological in love with someone’s voice; thus Muzaffar’s reply, treatments for autoimmune MG emergencies such as “I love through the medium of my ears,” which Ibn breathing difficulties (crisis) include filtering the blood, Khallikan expanded with similar thoughts from earlier plasmapheresis, and/or intravenous immunoglobulin. blind poets. The skills of memorizing and expounding For long-term immunological treatment, therapies differ Arabic literature, and expressing well-worn ideas for early-onset MG, late-onset MG, and MG associated about female beauty in neatly turned verse, continued with tumor of the thymus gland, thymoma. Thymectomy in the thirteenth century to provide an opportunity for is often effective for early-onset MG (before age 50). a few capable blind men to take part, without much Drugs that suppress the immune system, including corti- disability, in the literary and courtly life of their times. costeroids, are useful for late-onset MG and for MG associated with thymoma (following thymectomy). Most —Kumur B. Selim MG patients can be treated effectively, but more specific Further Readings therapies are still needed. Ibn Khallikan’s Biographical Dictionary. 1842–1871. Translated —John C. Keesey by Mac Guckin de Slane, Vol. 3, pp. 366–369. Paris.

Further Readings ᨘ MYASTHENIA GRAVIS Keesey, J. C. 2002. Myasthenia gravis, an illustrated history. Roseville, CA: Publishers Design Group. Myasthenia gravis (MG) is a syndrome of fluctuating ———. 2004a. “Clinical Evaluation and Management of skeletal muscle weakness that worsens with use and Myasthenia Gravis.” Muscle & Nerve 29:484–505. improves with rest. Eye, facial, oropharyngeal, truncal, ———. 2004b. “A History of Treatments for Myasthenia Gravis.” Seminars in Neurology 24:6–16. and limb muscles may be involved in varying combi- nations and degrees of severity. MG occurs throughout the world at any age from birth to the tenth decade. Today’s overall annual incidence is 20 new MG cases ᨘ MYOFASCIAL PAIN per million individuals, with a remarkable increase with age. Current point prevalence rates of MG are in DEFINITION AND SYMPTOMS the range of 100–200 per million population. The etiology of MG is varied, divided initially Myofascial pain is a chronic regional musculoskeletal between those rare congenital myasthenic syndromes pain syndrome characterized by the presence of trigger 1128———Myofascial Pain points, which are discrete areas of focal tenderness recognition by the patient is important to confirm that within a muscle that reproduce the patient’s pain and the trigger points are indeed the cause of relevant pain. have a characteristic referral pattern when palpated. The treatment of myofascial pain may be either The characteristic symptoms of myofascial pain pharmacological (involving the use of medications) may begin after a discrete trauma or injury or may be or nonpharmacological. Pharmacological treatments of insidious onset. Patients note localized or regional may include anti-inflammatory medications (for deep aching sensations, which can vary in intensity example, ibuprofen) to help treat any associated bursi- from mild to severe. The myofascial trigger points tis, tendonitis, or other inflammatory condition. of each muscle have their own characteristic pain Several different types of muscle relaxants are useful patterns. Often associated subjective symptoms are as well. Low doses of antidepressants have demon- present, such as abnormal sweating, vasomotor/ strated utility in reducing pain even in the absence of temperature changes, paresthesias (“pins and needles” clinical depression. In severe cases, botulinum toxin sensation), edema (swelling), joint stiffness, impaired may be injected in the painful musculature. Nonphar- muscle coordination, decreased work tolerance, macological options include massage, ice, heat, fatigue, and weakness. acupuncture, and relaxation training. Trigger point injections are reserved for recalcitrant cases.

CAUSE Rehabilitation and Exercise Although many theories have been developed, no absolute answer has been reached concerning the cause Physical therapy is indicated both to provide local of myofascial pain syndrome. The recent medical treatment and, most important, to ensure that the literature demonstrates that excess release of acetyl- patient is educated in appropriate exercise, including choline (the chemical responsible for communication stretching, graded strengthening, and aerobic exercise between the nerve and muscle at the neuromuscular to decrease pain and improve function. An occupa- junction) may result in chronic muscle shortening, rel- tional therapist can be helpful in educating the patient ative ischemia (diminution of local blood flow), and on proper body mechanics and improving workplace reduction of energy supply to the muscle. ergonomics. Reinforcement of appropriate posture, In addition, in this chronic pain syndrome, neuro- stretching, and relaxation training can be helpful com- chemical changes occur at higher-level pain-processing ponents of rehabilitation. centers in the spinal cord and brain, rendering the ner- vous system more sensitive to pain. This results in a FUNCTIONAL OUTCOME hypersensitivity to both painful and normally non- AND DISABILITY painful stimuli. To date, few outcome studies have examined myofas- cial pain and its treatment. One research study found PHYSICAL EXAMINATION improvements in life satisfaction and coping skills as AND TREATMENT well as decreased sick-leave time after rehabilitation. Growing evidence suggests a link between arm pain A comprehensive medical, neurological, and muscu- and physical risk factors in the workplace. Therefore, loskeletal physical examination is performed to iden- possible ergonomic solutions may be forthcoming. No tify underlying structural causes of regional pain, such studies have yet been conducted regarding myofascial as sciatica, bursitis, or tendonitis. Thereafter, careful pain and disability. palpation of the painful region is necessary to search for trigger points. Trigger points feel like ropy bands of —Joanne Borg-Stein muscle and are painful when pressure is applied. Pain is often referred distally (away from the area). Pain See also Pain. Myopathy———1129

Further Readings autosomal dominant fashion, meaning that an affected Borg-Stein, J. and D. G. Simons. 2002. “Focused Review: parent has a 50 percent chance of passing the disease Myofascial Pain.” Archives of Physical Medicine and on to a child. The congenital myopathies are further Rehabilitation 83(3 Suppl. 1): S40–S49. classified by abnormalities seen on muscle biopsy. In Cummings, T. M. and A. R. White. 2001. “Needling Therapies the past, they were also distinguished from the dystro- in the Management of Myofascial Trigger Point Pain: A phies by nonprogressive weakness; however, it is now Systematic Review.” Archives of Physical Medicine and recognized that weakness does progress in some of Rehabilitation 82:986–992. Davies, C. 2001. The Trigger Point Therapy Workbook. Oakland, these disorders. CA: New Harbinger. The metabolic myopathies are caused by abnor- Finley, J. E. 2004. “Myofascial Pain.” Retrieved April 20, 2005 malities in glycogen or fat metabolism in muscle, (http://www.emedicine.com/pmr/topic84.htm). producing weakness, early fatigability, and muscle Mense, S., D. G. Simons, and I. J. Russell. 2001. Muscle Pain: Its cramping. Mitochondrial myopathies are caused by Nature, Diagnosis, and Treatment. Philadelphia: Lippincott abnormalities in the mitochondria, the energy source Williams & Wilkins. Palmer, K. T. 2003. “Pain in the Forearm, Wrist and Hand.” Best for cells. Unfortunately, there is no effective pharma- Practice & Research Clinical Rheumatology 17:113–135. cological treatment to reverse weakness caused by the Simons, D. G., J. G. Travell, and L. S. Simons. 1999. Myofascial inherited myopathies. However, the use of rehabilita- Pain and Dysfunction: The Trigger Point Manual, Vol. 1, tion strategies limits the disability and handicap pro- Upper Half of Body, 2d ed. Philadelphia: Lippincott Williams duced by these diseases. & Wilkins. The acquired myopathies are often treatable with Sola, A. E. and J. J. Bonica. 1990. “Myofascial Pain Syndromes.” Pp. 353–367 in The Management of Pain, 2d ed., edited by medications. The inflammatory myopathies (der- J. J. Bonica, J. D. Loeser, C. R. Chapman, et al. Philadelphia: matomyositis, polymyositis, and inclusion body Lea & Febiger. myositis) are the most common acquired myopathies, with an incidence of 1–2 per 100,000. Dermatomyositis and polymyositis are autoimmune diseases, which ᨘ MYOPATHY can be treated with drugs that modulate the immune system (e.g., steroids). Inclusion body myositis does Myopathy is a general term referring to a disease of the not respond well to pharmacological treatment. The muscle. Myopathies can be subdivided into hereditary endocrine myopathies can be treated through correc- and acquired variants. The hereditary myopathies tion of the underlying hormonal imbalance, such as include the various forms of muscular dystrophy, con- hypothyroidism or hyperparathyroidism. The toxic genital myopathies, metabolic myopathies, and some myopathies can be reversed through elimination of the mitochondrial myopathies. The acquired myopathies responsible drug or the offending toxin (e.g., alcohol). include a group of diseases known as the inflammatory The disability associated with myopathies is caused myopathies, toxic myopathies caused by drugs or other by muscle weakness. Depending on the particular chemicals, and myopathies due to endocrine dysfunc- disease, the limb, trunk, breathing, chewing and swal- tion. All myopathies cause skeletal muscle weakness, lowing, and ocular muscles can all be involved. Some which can cause disability. of the myopathies have an abrupt onset with rapid The hereditary myopathies come from genetic development of weakness (e.g., dermatomyositis), defects affecting the expression of a protein, enzyme, whereas others present with gradual weakness (e.g., or other structure within muscle. With the explosion some cases of FSH and myotonic dystrophy). Onset of molecular genetics, many of these genetic defects can occur in childhood or adulthood. Disability and and gene products have been identified. The three impairment due to limb muscle weakness can be min- most common hereditary myopathies are all forms of imized through the provision of appropriate assistive muscular dystrophy: Duchenne dystrophy, myotonic devices, braces, and alternate modes of mobility dystrophy, and facioscapulohumeral (FSH) dystrophy. (scooter, wheelchair). Respiratory muscle weakness is Both myotonic and FSH dystrophy are inherited in an often managed through the use of noninvasive 1130———Myopathy ventilation and through assistance with coughing. Further Readings Speech therapists can teach patients compensatory Brown, William F., Charles F. Bolton, and Michael J. Aminoff, strategies to minimize swallowing and speech diffi- eds. 2002. Neuromuscular Function and Disease: Basic, culties caused by bulbar muscle weakness. In some Clinical, and Electrodiagnostic Aspects. Philadelphia: W. B. myopathies, cardiac muscle is involved as well as Saunders. skeletal muscle, producing another source of disabil- Nelson, Maureen. 2000. “Rehabilitation Concerns in Myopathies.” Pp. 1045–1072 in Physical Medicine and ity, which may be managed through medications Rehabilitation, edited by Randall L. Braddom. Philadelphia: and/or pacemaker placement. W. B. Saunders. In the near future, advances in molecular genetics that have identified the causes of many of the inher- Websites ited myopathies may translate into effective treat- Muscular Dystrophy Association, http://www.mdausa.org ments that will reduce the disability caused by these diseases. Likewise, ongoing research on the pharma- cological treatment of the inflammatory myopathies may reduce disability from these diseases. —Lisa S. Krivickas N

ᨘ NARCISSISTIC Further Readings PERSONALITY DISORDER American Psychiatric Association. 1994. Diagnostic and Statistical Manual of Mental Disorders, 4th ed. Washington, Although prevalent in human society since the DC: American Psychiatric Association. beginning of recorded history, narcissistic personality disorder has attained prominence as a distinct disabil- ity only in the past quarter century through the work of ᨘ NATIONAL ACTION psychoanalysts. The disorder is characterized by most PLANS IN NORWAY of the following: extreme sensitivity to slights, a grandiose sense of self-importance, a great need for See Norway: National Action Plans admiration accompanied by a personal lack of empa- thy, a sense of being so special or unique that only high-status people or institutions are worthy of associ- ᨘ ation, a sense of entitlement (unreasonable expecta- NATIONAL CENTER FOR tions of especially favorable treatment), and arrogance. MEDICAL REHABILITATION Rather than seeing them as people who were overly RESEARCH (UNITED STATES) indulged growing up, contemporary psychoanalysts view such persons as having been partly arrested in their The National Center for Medical Rehabilitation emotional development at a stage of early childhood. Research (NCMRR) has primary responsibility for Seeking the parents’ validation and a sense of personal medical rehabilitation research that is supported by specialness is within normal developmental bounds at the U.S. government’s National Institutes of Health age two or three. When such emotional supplies are not (NIH). The center’s professed mission is to foster adequately provided to them in childhood, the inappro- development of scientific knowledge needed to priate seeking of them well into adulthood is the hall- enhance the health, productivity, independence, and mark of people with this disability. Treatment rests on quality of life of persons with disabilities. Research the psychotherapist’s tolerance of their self-centered is emphasized that addresses the health-related prob- behavior without gratifying it and promoting insight lems of people with disabilities and that has implica- into the patient’s exaggerated vulnerability to empathic tions for enhancing their daily functioning. The center lapses by the therapist and others in their world. pursues its mission principally by providing multiyear grants-in-aide to investigators located in universities, —Jerome A. Winer medical schools, and other institutions throughout the See also Psychiatric Disorders; Psychiatry. United States.

1131 1132———National Center for Medical Rehabilitation Research (United States)

The Research Plan for the National Center for on matters and policies relating to the center’s Medical Rehabilitation Research (National Institute programs. The Coordinating Committee is charged of Child Health and Human Development 1993) describes with making recommendations to the directors of the a conceptual framework for identifying research that NICHD and NCMRR regarding the center’s research the NCMRR supports. Seven priority areas are the plan and its activities that are carried out in conjunc- following: tion with other organizational entities within the NIH and throughout the federal government. Improving functional mobility The NCMRR’s efforts are organized in terms of Promoting behavioral adaptation to functional losses three programs. The Biological Sciences Program promotes basic research to provide the scientific Assessing the efficacy and outcomes of medical reha- underpinnings of clinical rehabilitation. Research bilitation therapies and practices supported by this program strives to understand the Developing improved assistive technology mechanisms of recovery from, and adaptation to, Understanding whole-body system responses to injury and disease. The Clinical Practice Program physical impairments and functional changes applies scientific findings to improve clinical prac- tices in rehabilitation. Work supported in this area Developing more precise methods of measuring includes development of new therapeutic interven- impairments, disabilities, and societal and functional tions, clinical trials of new interventions, and clinical limitations studies to improve and validate existing rehabilita- Training research scientists in the field of rehabilitation tion practices. The behavioral science portion of the Behavioral Science and Rehabilitation Engineering The NCMRR’s annual expenditure in 2002 for Program supports research that is relevant to the research and research training was $57,659,000. The development or redevelopment of individuals’ emo- bulk of those funds supported research grants that tional, cognitive, and behavioral functioning. The originated with unsolicited, investigator-initiated rehabilitation engineering component encourages applications for funding that then were submitted applications of engineering and bioengineering to peer review. A small percentage of applications principles to promoting the habilitation or rehabilita- were funded in response to solicitations that were tion of people with physical disabilities. Examples announced by the NCMRR on topics of special include research on various forms of assistive tech- importance to the center. nology, including prostheses and devices for wheeled Established by legislation passed by the U.S. mobility. Congress in 1990, NCMRR is a component of the —Marcus J. Fuhrer National Institute of Child Health and Human Development (NICHD), a part of the NIH. That legis- See also National Institute on Disability and Rehabilitation lation established two other entities, the National Research (NIDRR) (United States); Rehabilitation Engineer- Advisory Board on Medical Rehabilitation Research, ing; Research. and the Medical Rehabilitation Coordinating Committee. The Advisory Board consists of 12 scien- Further Readings tists and clinicians in medical rehabilitation, 6 people National Institute of Child Health and Human Development. with disabilities who have been recipients of medical 1993. Research Plan for the National Center for Medical rehabilitation services, and 17 ad hoc members from Rehabilitation Research. NIH Publication No. 93–3509. government agencies that fund research or service Washington, DC: National Institutes of Health. programs of relevance to medical rehabilitation. Its principal functions are to recommend research initia- Websites tives that it believes the center should undertake and to Additional information about NCMRR, http://www.nichd.nih.gov/ advise the directors of the NIH, NICHD, and NCMRR about/ncmrr/ncmrr.htm National Institute on Disability and Rehabilitation Research (NIDRR) (United States)———1133

ᨘ NATIONAL INSTITUTE NIDRR’s initial research plan focused on functional ON DISABILITY AND areas of research needs including mobility, communica- tion, function, education, employment, recreation, and REHABILITATION RESEARCH activities of daily living. Using a competitive grant pro- (NIDRR) (UNITED STATES) cess, NIDRR program mechanisms included the follow- ing: rehabilitation research and training centers (RRTCs), The U.S. National Institute on Disability and rehabilitation engineering research centers (RERCs), Rehabilitation Research (formerly the National spinal cord injury rehabilitation centers, centers for deaf- Institute on Handicapped Research and hereafter blind youths, and coordination with international reha- referred to as NIDRR) was established in 1978. The bilitation research centers. U.S. Congress adopted the Rehabilitation Compre- After the passage of the Americans with hensive Services and Developmental Disabilities Disabilities Act in 1990, NIDRR increased its empha- Amendments of 1978 (Public Law 95–602), which sis on research related to independent living and com- removed the engineering and training programs previ- munity integration. The most recent long-range plan ously administered by the Rehabilitation Services for 1999–2003 was issued in 2000. The disability Administration (RSA) in the U.S. Department of paradigm, which provides the value framework for the Health, Education, and Welfare and placed them in plan, maintains that disability is a product of an inter- NIDRR located in the newly reorganized Department action between the individual and the environment. of Education under the Office of Special Education The plan listed the following research agenda areas: and Rehabilitative Services. The institute’s name was (a) employment outcomes, (b) health and function, changed to NIDRR by the 1986 amendments to the (c) technology for access and function, (d) indepen- Rehabilitation Act. The mission of NIDRR is to con- dent living and community integration, and (e) associ- tribute to the independence of persons of all ages who ated disability research areas such as statistics. The have disabilities by seeking improved systems, prod- plan also listed priorities for related activities in ucts, and practices in the rehabilitation process. knowledge dissemination and utilization and capacity NIDRR is an old program. The official role of the building for rehabilitation research. RRTCs and U.S. government in vocational rehabilitation, prosthe- RERCs continued to receive the largest percentage of sis research, and other disability-related research dates NIDRR’s resources with 22.8 percent and 10.78 per- back to the 1930s and 1940s. Much of the groundwork cent, respectively, of the $70 million appropriated to for the current system of rehabilitation research was NIDRR in fiscal year 1996. laid in the 1940s by the National Academy of Sciences In an enumeration of research and administra- and the armed services response to the postwar needs tive accomplishments from 1993 to 2001, NIDRR of veterans. A large share of the initial research was identified both administrative reforms and research conducted by the Department of Defense and the outcomes. Administrative reforms include reinvigo- Veterans Administration (VA) on prosthetic devices. rating the Interagency Committee on Disability The Interagency Committee on Rehabilitation Engineer- Research, overhauling its peer and program review ing, a working group composed of representatives of processes and implementing a Center of Excellence the National Science Foundation, National Bureau of model that balances scientific rigor with consumer Standards, National Aeronautics and Space Adminis- relevance. Research accomplishments include the fol- tration (NASA), VA and other agencies, and the Senate lowing: (a) establishing the first RERC on telerehabil- Committee on Labor and Human Resources, was itation, (b) continued decrease of decubitus ulcers and responsible for NIDRR’s initial long-range plan. The other secondary complications of spinal cord injury, Interagency Committee for Disability Research, which (c) expanding the Traumatic Brain Injury System and is coordinated by NIDRR, is responsible for reviewing initiating a system in Burn Rehabilitation, (d) research proposed research projects and for identifying areas support for the accessibility features in the Windows that overlap with ongoing projects. operating system, and (e) initiating voting research. 1134———National Theatre of the Deaf (United States)

NIDRR has been involved in a number of science criticized the company for gearing productions to and technology policy issue areas and initiatives primarily hearing audiences. during this period including the President’s Executive NTD was conceived and eventually founded by a Memorandum on Technology Transfer, the President’s hearing medical professional and several high-profile, Information Technology Advisory Committee and hearing theater artists. Dr. Edna S. Levine, an expert Section 508 and electronic accessibility in the work- in deafness and psychology as well as an ardent place, and signing cooperative agreements with fed- attendee of Deaf amateur performance events, origi- eral laboratories. NIDRR unleashed new international nally conceived the idea for NTD in the late 1950s and initiatives that included the Web Accessibility early 1960s. She garnered the support of actor Anne Initiative within the World Wide Web Consortium Bancroft, who had consulted Levine for research (W3C), and the establishment of an RERC on land about deafness for her role as Anne Sullivan, the mines. visually impaired teacher of deaf and blind Helen Keller, in Broadway’s version of The Miracle Worker. —Katherine D. Seelman Broadway directors Gene Lasko and Arthur Penn See also National Center for Medical Rehabilitation Research and Tony Award–winning Broadway set designer David (United States); Rehabilitation Act of 1973 (United States); Hays also lent their support. Early efforts foundered Rehabilitation Engineering; Research; Telerehabilitation. when the federal government turned down two differ- ent grant applications. Hays and Levine continued Further Readings to pursue funding with the assistance of faculty at Brandt, E. N. and A. M. Pope, eds. 1997. Enabling America: Gallaudet University; hearing administrator Mary Assessing the Role of Rehabilitation Science and Switzer of the Department of Health, Education, and Engineering. Washington, DC: National Academy Press. U.S. National Institute on Disability and Rehabilitation Research. Welfare; and deaf and hearing administrators of the 2000, July. “NIDRR Long-Range Plan 1999–2003.” Vocational Rehabilitation Administration. ———. 2001. “National Institute on Disability and Rehabilitation This persistence and networking paid off in 1965 Research 1993–2001: Accomplishments.” (http://www.ncddr. when NTD earned its first federal grant for the org/new/announcements.html.) 1966–1967 season. Along with federal grants, NTD Technology U.S. Office of Technology Assessment. 1982, May. is supported by corporate donors and ticket revenue. and Handicapped People. Washington, DC: U.S. Government Printing Office. The company’s first home was the Eugene O’Neill Memorial Theatre in Waterford, Connecticut, moving to Chester, Connecticut, in 1983, and moving to its ᨘ NATIONAL THEATRE OF current home in Hartford, Connecticut, in 2000. THE DEAF (UNITED STATES) Throughout its history, NTD has collaborated frequently with Gallaudet University faculty and students. The National Theatre of the Deaf (NTD) is the world’s NTD’s repertoire includes adaptations of canonical first professional deaf theater company and the oldest dramatic literature (both Western and non-Western), continually producing touring theater company in the children’s literature, poetry, letters, novels, and fables. United States. NTD’s influence is widespread and The work has appeared on stage, film, and television. renowned: The company has trained most of the deaf The company strives for cultural diversity, a goal theater artists working today, and a number of its furthered by exchanging company members with alumni have started their own deaf theater companies international deaf theater companies and the regular across the United States and abroad. NTD has also inclusion of international artists in their professional educated generations of hearing audiences about training programs. In addition, NTD has collaborated American Sign Language and Deaf culture and pro- with hearing theater luminaries such as Peter Brook, vided intercultural experiences that bring both deaf Arvin Brown, Colleen Dewhurst, Bill Irwin, Marcel and hearing audiences together. Despite the com- Marceau, Chita Rivera, Jason Robards, and Peter pany’s successes, some deaf audience members have Sellers. Nazism———1135

In addition to its theatrical productions, NTD concerns, NTD began developing original work for has included a professional actor-training program deaf audiences about Deaf culture. As deaf theater (Deaf’s Actors Academy, its earliest incarnation artists became trained and experienced, they moved founded in 1967), a touring theater for young audi- into leadership positions within the organization and ences (Little Theatre of the Deaf, founded in 1968), took on more directing and design assignments. Com- workshops for deaf playwrights (primarily active plaints from the deaf community about the produc- from 1977 to 1982), and educational outreach pro- tions’ unintelligibility have quieted as well. Audiences grams. NTD has performed in all 50 of the United may have simply become accustomed to NTD’s the- States and on five continents. atrical vocabulary as it has become more convention- To appeal simultaneously to both deaf and hearing alized and used by numerous companies. While the audiences, NTD has developed a unique theatrical majority of NTD’s audiences remain hearing (about style, a seamless hybrid of corporeal and spoken lan- 90 percent), over the years the company has dedicated guages in which audiences “see and hear every word.” portions of its season to work by, for, and about the Because of his background and training as a set and Deaf community. lighting designer, David Hays recognized that the —Carrie Sandahl sculptural qualities of sign language theater had the potential to revolutionize theater aesthetics as a See also Aesthetics; Dance; Deaf Culture; Drama and whole. In contrast to traditional Western theater’s Performance. focus on spoken text and realistic acting styles, NTD’s performance style emphasizes the spatial and dance- Further Readings like qualities of human communication. The result- Baldwin, Stephen C. 1993. Pictures in the Air: The Story of ing style blends the spoken word, American Sign the National Theatre of the Deaf. Washington, DC: Gallaudet Language, sign-mime, invented theatrical sign lan- University Press. Lessons in Laughter: The Autobiography of guage, music, and stylized individual and ensemble Bragg, Bernard. 1989. a Deaf Actor. Washington, DC: Gallaudet University Press. movement. A hallmark of NTD’s style is the creation Kochhar-Lindgren, Kanta. 2002. “Between Two Worlds: The of visual scenic elements using only the actors’ bod- Emerging Aesthetic of the National Theater of the Deaf.” ies, a few suggestive props, music, and unusual sound Pp. 3–15 in Peering behind the Curtain: Disability, Illness, effects. NTD employs both deaf and hearing perform- and Extraordinary Body in Contemporary Theatre, edited by ers. Deaf performers most often portray main characters Thomas Fahy and Kimball King. London: Routledge. Signs of Silence: Bernard Bragg and the with hearing actors located on the stage’s periphery Powers, Helen. 1972. National Theatre of the Deaf. New York: Dodd, Mead. voicing the main characters’ lines, a technique called shadowing. Sometimes hearing actors play minor Websites characters as well. The NTD’s performance style and repertoire have National Theatre of the Deaf, http://www.ntd.org/ not succeeded without controversy. During its early years, while the company was in the process of invent- ing its theatrical vocabulary, deaf audiences com- ᨘ NAZISM plained that the American Sign Language used in the productions was unintelligible to them. They com- Disabled people have faced both neglect and oppres- plained that the signing was performed too quickly sion within different cultures and political systems, and invented signs were cryptic. Furthermore, deaf throughout history. Yet the period of Nazi control in audiences felt that the material was more often than Germany (1933–1945) is notorious for genocidal poli- not geared toward hearing audiences and that Deaf cies toward disabled people. In the postwar period, cultural issues went unexplored. Deaf audiences also the magnitude and cruelty of the “Final Solution” or tended to be suspicious of a company whose leader- Holocaust of the Jewish people has overshadowed the ship was almost entirely hearing. To address these parallel exterminations of disabled people, homosexuals, 1136———Nazism

Gypsies, Communists, Jehovah’s Witnesses, and other these views were not unique to Nazi ideologues: minorities. Reclaiming the story of the Nazi eugenic Beliefs about race and fitness had been popular since and euthanasia program has been an important part of the late nineteenth century in German science and the disability studies project and the political develop- medicine. Old ideas were reinforced and emboldened ment of the disability movement. Where neo-Nazi by the development of the Nazi movement. During the groups have been resurgent in America and Europe 1930s, and especially after the takeover of power in in the late twentieth century, disabled people have 1933, propaganda against disabled people became been targeted for abuse, attack, and sometimes murder, more common. For example, the film I Accuse featured showing the continued need for awareness of Nazi a husband who killed his wife, who was suffering from ideology. multiple sclerosis. This idea of mercy killing was to become a major element in the Nazi approach to dis- THE NAZI VIEW OF DISABILITY ability. Other terms used in propaganda posters and films to describe disabled people included “useless Social Darwinism—the application of Herbert Spencer’s eaters,” “ballast existence,” and “.” idea of “the survival of the fittest” (it was English philosopher Spencer who first used the phrase)—was NAZI ACTIONS widely accepted and promoted in the Germany of the AGAINST DISABLED PEOPLE 1920s. ’s political manifesto, Mein Kampf, adopted a strongly social Darwinist approach: “The After 1933, eugenic laws were passed in Germany, strongest asserts its will; it is the law of nature” (quoted which prohibited marriage for certain individuals and in Gallagher 1995, p. 21). One of his perennial concerns mandated sterilization for some. These laws were com- was with the biological basis of the German race. This parable to equivalent legislation in the United States took the form of perorations against Slavic or Jewish and the Nordic countries. After the advent of war, a intermarriage with Germans, and the threat of “mongre- covert euthanasia program (T4) was authorized by lization.” It also led Hitler to express prejudice against Hitler, which led to the murder of 70,000 disabled the weak, sick, and disabled. Thus, he expressed admira- people in six killing centers, largely by gassing them. tion for the Spartan city-state of classical times: “The The main targets for murder were individuals who lived exposure of the sick, weak, deformed children, in short in institutions, particularly people with learning diffi- their destruction, was more decent and in truth a thou- culties or mental health problems. After complaints and sand times more humane than the wretched insanity of concerns were raised among the public, the official our day which seeks to preserve the most pathological euthanasia program was halted. However, it was replaced subjects” (quoted in Gallagher 1995, p. 21). by other measures to murder disabled people and also In his speeches and policies, Adolf Hitler negated people with tuberculosis and other diseases, particularly both the Christian and humanist traditions, by explicitly as the German army took over territory to the East— promoting militarism and putting the good of the nation “wild euthanasia” as it was called. The technicians of the above the rights of individuals. For example, he T4 program moved on to staff the new extermination cen- claimed: “Nature is cruel; therefore we are also entitled ters, which murdered Jews and other minorities. to be cruel. When I send the flower of German youth Meanwhile, a children’s euthanasia program murdered into the steel hail of the next war without feeling the thousands of disabled children in hospitals, via starvation slightest regret over the precious German blood that is or lethal injection: this program continued until 1945. being spilled, should I not also have the right to elimi- The motivation for euthanasia was largely eco- nate millions of an inferior race that multiplies like ver- nomic: In the context of war, it was an attempt to save min?” (quoted in Fest 1974, pp. 679–680). money and resources by eliminating dependent people. Mein Kampf is full of prejudice against disabled The aim of racial purification was often subsidiary people and expresses the view that disabled people to the financial motive; for instance, disabled people should be prevented from reproducing. However, outside institutions were less likely to be killed. Nazism———1137

As well as official and unofficial euthanasia, highest percentage of members of the Nazi party disabled people were subjected to medical experimen- (approximately 50 percent). Many Nazi doctors tation, particularly in the concentration camps such as escaped postwar prosecution, and some continued to Auschwitz. During the Nazi era, such research was take a leading role in German and international medical conducted with little or no regard for the rights of the science after 1945. subjects, or concern for the origins of the medical specimens that were used. Corpses or body parts were sent to scientists from residential institutions, killing THE NAZI ANALOGY centers, and concentration camps. For example, Julius Referring to the eugenic and euthanasia programs Hallervorden, working at the Kaiser Willhelm Institute carried out against disabled people during the Nazi era for Brain Research in Berlin—now the Max Planck has rhetorical force in contemporary political argu- Institute—received more than 600 brains from institu- ments. For example, it is not uncommon for disability tions. He was very prominent in the field of neurology activists to label modern genetic research or screening and gave his name to Hallervorden-Spatz disease. While services as “Nazi.” Individuals who take positions that the means and values of Nazi science may have been appear threatening or hostile to disabled people—such reprehensible, not all the findings can be dismissed as as the bioethicist Peter Singer—have been tarred with bad science. For example, alongside the eugenic and the “Nazi” epithet. euthanasia programs, public health physicians were Equally, advocates of particular screening policies making major discoveries about the causes of cancer, have used the Nazi example as a way of distinguishing linking tobacco to lung cancer for the first time. between their own ideas and the discredited notions of This raises important questions about the extent to eugenics that predominated prior to 1945. Distinctions which all these developments should be attributed to between “bad science” and “evil eugenics” versus the Nazis themselves. Hugh Gallagher (1995) argues “good science” and “reproductive choice” are used to that “although this program was authorised by Hitler exonerate governments, medical professionals, and and carried out under the auspices of the National families from having immoral motivations or actions. Socialist government of the Third Reich, it would be Yet, on closer examination, freedom of choice is not a mistake to call it a Nazi programme. It was not. The always a reality, and the attitudes of doctors may program was conceived by physicians and operated sometimes sound implicitly or explicitly eugenic. by them. They did the killing. While many of these The descriptor “Nazi” has huge power, and it physicians were Nazis, many more were not. The pro- should be deployed with care and accuracy, not gram’s sponsors and senior participants were the lead- simply as a way of dismissing others with different ing medical professors and psychiatrists of Germany, views. Equally, when arguments about saving money men of international reputation” (p. xv). by preventing the birth of disabled people—or about Nor was eugenics solely a Nazi ideology. In the putting the interests of society above those of the United States, the Nordic countries, and across the individual—are being used by scientists and policy world, involuntary eugenic sterilization was widely makers, then it is important to remember the past con- used during the twentieth century. However, in adopt- texts in which these arguments were deployed. ing official and unofficial euthanasia programs, the Understanding how the abuses of the Nazi era came Nazi regime went further than any other. about—and guarding against similar measures in It should be noted that the eugenic and euthanasia modern medicine or social policy—remains vital in the programs, although authorized by Hitler and carried twenty-first century, in as well as in less out under the National Socialist government of the liberal regimes. Third Reich, were largely conceived and carried out by senior medical professionals, not Nazi storm troopers —Tom Shakespeare or party ideologues. However, medical professionals were undoubtedly the professional group with the See also Bioethics; Eugenics; Eugenics: Germany; T4 Program. 1138———Nesbitt, Murrogh de Burgh (1889–1959)

Further Readings replaced, and the Nesbitts were ousted from Avalon. Burleigh, M. 1994. Death and Deliverance: “‘Euthanasia’” They moved to farming in the Orange Free State, living in Germany 1900–1945. Cambridge, UK: Cambridge among the Basuto people. Murrogh Nesbitt was years University Press. ahead of his time in implementing ideas of self-help, Fest, J. 1974. Hitler. New York: Vintage. mutual therapy, and the importance of disabled people Gallagher, H. 1995. By Trust Betrayed: Patients, Physicians and as leaders and role models. the Licence to Kill in the Third Reich. New York: Vandamere. Kater, M. 1987. “Medizin und Mediziner im Dritten Reich: Eine —Kumur B. Selim Bestandsaufnahme.“ Historische Zeitschrift 244:299–352. Müller-Hill, B. 1987. “Genetics after Auschwitz.” Holocaust and See also Disability in Contemporary Africa. Genocide Studies 2:3–20. Sofair, A. N. and L. C. Kaldjian. 2000. “Eugenic Sterilization and Further Readings a Qualified Nazi Analogy: The United States and Germany, Nesbitt, M. de B. 1944. The Road to Avalon. Cape Town: 1930–1945.” Annals of Internal Medicine 132:312–319. Timmins. Avalon Adventure. Websites ———. 1958. Cape Town: Timmins. Bibliography of writings on Nazism and disability, http://www. disabilityhistory.org/biblios_new.html#nazi ᨘ NETHERLANDS

See Experience of Disability: The Netherlands ᨘ NCMRR

See National Center for Medical ᨘ Rehabilitation Research (United States). NEURAL ENGINEERING

Neural engineering refers to a new discipline that has emerged by combining engineering technologies ᨘ NESBITT, MURROGH and mathematical/computational methods with neuro- DE BURGH (1889–1959) science techniques. The objective is to enhance our South African independent living pioneer understanding of the functions of the human nervous system. Neural engineering also holds promise to Murrogh de Burgh Nesbitt lost his legs at 13, falling improve human performance, especially after injury from a train on which he hitched a ride at or disease. As befits such a broad definition, the field Jagersfontein. The next 30 years of activity and is multidisciplinary, in that it draws from neurological adventure, overcoming physical obstacles and attitu- sciences (especially neurobiology and neurology) but dinal barriers in others’ minds, appeared in his much- also from a diverse range of engineering disciplines, reprinted autobiography, The Road to Avalon (1944), including computer sciences, robotics, material where Nesbitt also sketched his dream of a rural cen- sciences, neural networks, signal processing, and sys- ter for self-help rehabilitation, run by disabled people. tems modeling and simulation. The dream was realized in 1946, after publication of While the potential applications of neural engineer- his first book. A further book (1958), including many ing are very broad, the discipline offers particular descriptions and first-person accounts of people over- opportunities for improving motor and sensory func- coming disabilities, described how the center tion after major human central nervous system ill- “Avalon” was built and developed by Nesbitt, his wife nesses such as stroke, traumatic brain injury, or spinal Fraan, and a few companions, near Tulbagh in the cord injury. In these illnesses, the new technologies Winterhoek Mountains, with fundraising and control can be applied to help reroute neural signals around vested in a committee of like-minded people at damaged areas of brain or spinal cord, or to substitute Johannesburg. However, by 1951, with Avalon in full one type of neural signal for another type that is lost swing, the original committee had largely been after the injury. Neurasthenia———1139

A particularly innovative example relating to the Clinical applications of neural engineering are descending control of muscle actions in spinal cord increasing rapidly in number, and there will certainly injury relies on the application of multi-electrode be many new practical applications emerging over the recording techniques to enable long-term, simultane- next few years. ous recordings from clusters of neurons in the motor —William Zev Rymer cortex during the performance of skilled voluntary movement tasks. These cortical signals can be used to See also Bioemechanics; Spinal Cord Injury; Stroke; Traumatic drive assistive devices, to program electrical stimulation Brain Injury. of muscles (functional electrical stimulation or FES), or to interact directly with computers as communica- Further Readings tion systems. Donoghue, J. P. 2002. “Connecting Cortex to Machines: Recent Leading investigators in this area are Andrew Advances in Brain Interfaces.” Review. Nature Neuroscience Schwartz (2004) from the University of Pittsburgh, 5(Suppl., November): 1085–1088. John Donoghue (2002) from Brown University in Patil, P. G., J. M. Carmena, M. A. Nicolelis, and D. A. Turner. 2004. “Ensemble Recordings of Human Subcortical Neurons Rhode Island, and M. A. Nicolelis (Patil et al. 2004) as a Source of Motor Control Signals for a Brain-Machine at Duke in North Carolina. Each group has developed Interface.” Neurosurgery 55(1, July): 27–35. impressive animal models that involve recordings Schwartz, A. B. 2004. “Cortical Neural Prosthetics.” Annual from various cortical areas during normal voluntary Review of Neuroscience 27:487–507. behaviors. These neural signals are usually filtered and processed to allow them to be used to instruct computers, to control simple robotic devices, or to ᨘ NEURASTHENIA activate electrical stimulators to control limb muscles. Exemplar approaches includes studies in which pri- Neurasthenia literally means nerve weakness. mates can be trained to use cortical neuron discharge Although the New York neurologist and electrothera- to control simple planar robots, or they can be used to pist Georg Miller Beard may not have coined the term, activate neural stimulators to excite muscles and move contemporaries certainly considered him to be the joints. father of neurasthenia. Beard’s publications on neuras- Alternative approaches allow signals from skin thenia appeared from 1869 until 1883, the year that he or other sensory areas to be routed around damaged died. His most influential books were A Practical areas and to be delivered to the cerebral cortex by Treatise on Nervous Exhaustion (Neurasthenia): Its other means. For example, sensory signals from the Symptoms, Nature, Sequences, Treatment (1880), and eye or from skin can be detected by a range of elec- American Nervousness: Its Causes and Consequences tronic sensors then delivered to the cortex in the form (1881). A German translation of A Practical Treatise of electrical stimulus trains. already appeared in 1881; a French translation fol- Other potentially helpful applications of neural lowed in 1895. In the meantime, the neurasthenia con- engineering include the development of novel record- cept had become widely known on both sides of the ing systems to allow long-term recording from small Atlantic, including Russia and Italy but also in, for groups of nerve fibers in peripheral muscle or skin example, the Dutch East Indies. From the early twen- nerves and the development of implantable stimula- tieth century onward, the diagnosis would also be tors for use in promoting recovery of walking in indi- introduced in countries such as Japan and China. viduals with spinal cord injury or for the restoration The label of neurasthenia was applied to a whole of motor function after cortical damage sustained as range of physical and mental symptoms, varying from a result of stroke. Neural cuffs placed around nerves anxiety, despair, phobias, and insomnia to inattention, innervating the foot sole can be used to sense foot extreme fatigue, palpitations, migraine, indigestion, contact during walking or to detect other phases of and impotence, among others. Neurasthenic symp- locomotion, allowing accurate programming of mus- toms were attributed to a lack of nerve force, stem- cle nerve stimulation. ming from excess demands on the brain, the digestive 1140———Neurological Impairments and Nervous Disorders organs, and the reproductive system. These demands, Lutz, Tom. 1991. American Nervousness, 1903: An Anecdotal in turn, were thought to result from the fast pace of History. Ithaca, NY: Cornell University Press. modern, urban life. Beard had presented neurasthenia Radkau, Joachim. 1998. Das Zeitalter der Nervosität: Deutschland zwischen Bismarck und Hitler. Munich: Hanser. as a truly American disease that was more or less the acceptable by-product of American civilization, but in the European context, next to modernity, heredity and degeneration also figured as explanatory concepts. ᨘ NEUROLOGICAL IMPAIRMENTS The therapeutic repertoire included treatment with AND NERVOUS DISORDERS electricity; visits to spas, seaside resorts, or the moun- tains; psychotherapy in combination with a stay in a Neurology is the study of human neuromuscular sanatorium of (mental) hospital; or the rest cure of the system, including the brain, spinal cord and roots, peri- American physician Silas Weir Mitchell, consisting pheral nerves, junctions between nerves and muscles, of seclusion, bed rest, electrical treatment, a nutritious and the muscles themselves, in health and disease. diet, and massage. Neurological impairment arises from an alteration of Neurasthenia acquired many different faces, geo- function in any of these structures and can result from graphically, socially, and through time. Not only was a wide variety of etiologies, from inherited genetic neurasthenia appropriated in many different ways, its conditions to obstructed blood flow to a particular part popularity as a diagnosis also varied significantly, as of the nervous system. Common neurological symp- did the popularity of its various therapies. Beginning toms and related disabilities include problems with as an affliction of the elite and the educated classes, memory, attention, concentration, speech or language neurasthenia was later “democratized” to a certain (aphasias); sleep disturbance; visual changes; dizzi- extent, by including ordinary people. Male neuras- ness or vertigo; fatigue; weakness; involuntary move- thenic patients tended to constitute the majority. In ments or muscle rigidity; pain; loss of sensation or America and Europe, neurasthenia’s heyday continued abnormal sensations; and problems with coordination into the first decade of the twentieth century. From the or gait. early twentieth century onward, neurasthenia shifted Neurology has a long history, and knowledge of the from a somatic into a psychic diagnosis. After World structure and function of the nervous system, along War I, the diagnosis of neurasthenia gradually became with conceptions of neurological impairments and outdated, although it by no means disappeared, as their related disabilities, can be roughly divided into witnessed by its inclusion in the 10th revision of three phases: the preclassical, classical, and scientific International Statistical Classification of Diseases and phases. During the preclassical period, from antiquity Related Health Problems (ICD-10) and the fourth edi- until the early nineteenth century, medical scientists tion of Diagnostic and Statistical Manual of Mental described several neurological syndromes, including Disorders (DSM-IV). Conditions similar to the ones epilepsy (the “sacred disease” or “falling sickness”), that used to be called neurasthenia now tend to be migraine and cluster headaches, hemorrhagic stroke labeled as chronic fatigue syndrome. In eastern Asia, (apoplexy), paralysis, and a variety of psychiatric neurasthenia is still a preferred diagnosis, presumably disorders. Anatomical knowledge during this period because of its somatic rather than mental connotation. was largely limited to the gross anatomy of the brain, spinal cord, and peripheral nerves. Concepts of the —Marijke Gijswijt-Hofstra nervous system’s function were correspondingly See also Anxiety Disorders. guided by structural appearance, so that peripheral nerves were believed to be conduits for the flow of Further Readings animal spirits or nervous fluid; or by extrapolation Gijswijt-Hofstra, Marijke and Roy Porter, eds. 2001. Cultures of from simple observation or experimentation, such Neurasthenia from Beard to the First World War. Amsterdam as the notion of reflex action. With a relatively short and New York: Rodopi. human lifespan, limited knowledge of the structure Neurological Impairments and Nervous Disorders———1141 and function of the nervous system, and the absence genetic analysis; structural imaging of the nervous of effective medications or interventions, neurological system from magnetic resonance imaging (MRI) of disability during the preclassical era frequently the entire brain to electron microscopy of individual involved chronic pain, paralysis, social stigma, and neurons and their connections; and techniques for institutionalization. studying brain function such as electroencephalogra- The classical period of neurology, from the phy (EEG), positron-emission tomography (PET), early nineteenth century to the mid-twentieth century, and functional MRI. Knowledge of the different orga- witnessed a dramatic growth in knowledge about the nizational levels of the nervous system (genetic, mol- structure and function of the nervous system, and ecular, membrane, cellular, and functional systems) is detailed clinical descriptions for dozens of neurologi- now integrated to provide a detailed account of many cal disorders along with their underlying pathology. neurological disorders. During this period, neuroanatomy advanced beyond These techniques have also produced new concepts the surface structure to the microscopic descriptions such as neurodegenerative disorders, autoimmune of the nervous system, including individual nerve syndromes, disease-modifying drugs, and critical time cells (neurons) and their connections, and provided a periods for therapeutic intervention. Indeed, recent foundation for the understanding of normal function decades have seen the development of highly effective and pathophysiology. Physiological concepts were symptomatic treatments for many neurological disor- still closely tied to general concepts of nerve impulses ders, as well as agents that alter the natural history of and reflex action, but were integrated with psycholog- neurological diseases. Neurological disability has ical notions of inhibition, association, and representa- been likewise transformed by our ability to diagnose tion. Many neurological disorders were first described neurological disorders at earlier stages, detect and during this period, including the aphasias or disorders manage risk factors for stroke, alleviate the paroxys- of language (Paul Broca, Carl Wernicke, Ludwig mal pain of migraine as well as the chronic pain of Lichtheim), several brainstem stroke syndromes, gen- peripheral neuropathy, delay the progression of condi- eral paresis and tabes dorsalis (syphilis of the brain tions such as Parkinson’s and Alzheimer’s diseases, and spinal cord), movement disorders such as and provide technologically advanced treatment or Parkinson’s and Wilson’s diseases, multiple sclerosis life support for patients with life-threatening neuro- (Jean Martin Charcot), hemi-transection of the spinal logical conditions. cord (Charles Éduoard Brown-Séquard), and muscu- Examples of common neurological disorders, their lar dystrophy (G. B. A. Duchenne). associated impairments, and treatments in Western Although several anesthetics, aspirin, and potent medicine follow: anticonvulsants (phenobarbital and phenytoin) were also developed during the classical period of clinical Movement disorders. Parkinson’s disease, the most neurology, disability was still largely related to the common movement disorder, involves three cardinal progressive or fixed paralyses, chronic pain, and insti- features, namely, tremor, rigidity, and bradykinesia, tutionalization, with the addition of traumatic brain but it is frequently associated with fatigue, cognitive lesions resulting from war injuries and generalized changes, and sleep disturbance. Medical therapy with syndromes related to combat and advancing technol- carbidopa/levodopa and other dopamine agonists ogy (“railway spine,” neurasthenia, shell shock). (medications that stimulate dopamine receptors) have The scientific phase of clinical neurology, dating significantly reduced these symptoms and their asso- from the early twentieth century until the present, has ciated disability. Surgical treatment with deep-brain produced an explosion of detailed knowledge about stimulators is available for severe cases. the structure and function of the nervous system. Several innovations made this rapid evolution possi- Headache. Migraine is one of the most common ble, including the development of information theory, headache syndromes and is frequently associated with storage, and analysis; techniques for molecular and severe pain, visual changes, dizziness, nausea, and 1142———Neurological Impairments and Nervous Disorders vomiting, requiring several hours of rest for sympto- Dementia. The most common form, Alzheimer’s- matic relief. Development of a novel class of neuro- type dementia, is increasing in both incidence and chemicals (serotonin agonists, or triptans) and the use prevalence and typically involves loss of memory and of antiseizure medications to prevent migraines has higher intellectual abilities. Symptoms include a pro- significantly reduced the frequency, intensity, and gressive loss of memory, difficulty with basic activities duration of attacks. of daily living, loss of autonomy, and institutionaliza- tion in severe cases. Anticholinesterase agents mildly Epilepsy. Recurrent seizures involve unpredictable slow the progression of disease. lapses of awareness and are frequently associated with either subtle automatic movements or violent jerking Radiculopathies. Symptoms of weakness, muscle movements of the entire body. They pose significant atrophy, and numbness in the arms of legs commonly risks of bodily injury or death. In addition, personal and result from compression of a spinal cord root com- social activities including driving, employment, and pressed by the bones of the vertebral column, interpersonal relationships are restricted in many cul- osteoarthritis, or displaced vertebral discs (herniated tures. Over a dozen new antiepileptic agents developed or “slipped” disc). Physical therapy, anti-inflammatory over the past 20 years have resulted in significantly agents, or surgical decompression or stabilization fewer medication side effects and some improvement provide effective symptomatic relief. in seizure control. Epilepsy surgery for refractory cases has excellent prognosis in select patients. Neuropathies. Injury to the peripheral nerves is most commonly produced by chronic disease (diabetes Stroke. Temporary or permanent interruption of mellitus), toxins (alcohol), infection (leprosy, hepati- blood flow to an area of the brain typically can produce tis), or repetitive mild trauma (carpal tunnel syn- a variety of neurological symptoms including aphasia, drome). Neuropathies can produce a loss of sensation weakness, visual problems, difficult swallowing, or in distal extremities, abnormal burning or lancinating paralysis, in addition to long-term neurological and pain, weakness, and a decline in gait. Minor trauma medical complications. Recovery of neurological func- due to numbness in the feet can lead to major compli- tion is highly variable and depends on several factors. cations such as infection of the bone (osteomyelitis) Acute intervention with thrombolytic agents (“clot or destruction of a joint (Charcot joint). Medical treat- busters”) or revascularization strategies can produce a ment of any underlying conditions producing nerve significant improvement in neurological outcome, but damage and the use of various medications for symp- these techniques are underused and limited to a very tomatic relief can minimize related disability. brief time window after the onset of symptoms. Motor neuron disease. Amyotrophic lateral sclerosis Demyelinating diseases. Multiple sclerosis is a pro- (ALS) is a relentlessly progressive disease typically gressive, disabling autoimmune syndrome that typi- affecting males in the fifth and sixth decades of life cally affects young women and involves inflammatory that involves symptoms of weakness and spasticity. lesions in the brain or spinal cord. Typical symptoms Disability is typically associated with loss of use of include cognitive difficulties and poor memory, loss the arms and legs, requiring the use of a wheelchair, of eyesight, weakness, incoordination, a decline in gait, as well as progressive weakness of the muscles of incontinence, and prominent fatigue. New chemicals speech, swallowing, and breathing. Physical therapy that modulate the immune system reduce the number of is helpful in managing symptoms of muscle cramping acute attacks, but their impact on long-term disability and spasticity but does not have an impact on the over- (i.e., average years before a patient is a wheelchair user) all disability or course of disease. is not yet clear. Other medications can alleviate symp- toms of profound fatigue and incontinence, improving This brief list of neurological conditions highlights the disability associated with these symptoms. the variability of neurological symptoms and their Neuropathy———1143 extraordinary impact on human function, life, and Historically, in the eighteenth and nineteenth centuries, culture. A historical view of neurological conditions neuropathy was not recognized as a separate disease, but and impairments also illustrates the evolving interac- rather diagnosed as progressive paralysis together with tion between medical knowledge, technology, prac- many other diseases. In the nineteenth century, many dif- tice, and therapeutics across history. ferent forms of neuropathy were described as ascending or descending according to the direction in which the dis- —David Millett ease progressed, because the common thought was that See also Aphasia; Dementia; Diabetes; Epilepsies, Temporal nearly all disorders of the nerves were based on inflam- Lobe; Epilepsy; Gait Analysis; Multiple Sclerosis; mation. A second diagnosis often used was progressive Neuropathy; Neuropsychiatry; Parkinson’s Disease; muscular atrophy (degeneration). Due to the work of great Repetitive Strain Injuries; Stroke; Vestibular Disorders. nineteenth-century French neurologists such as Jean Further Readings Martin Charcot and G. B. A. Duchenne, many new diseases were split from this general category of progressive mus- Adams, Raymond D., Maurice Victor, and Allan H. Ropper. 1997. Principles of Neurology, 6th ed. New York: McGraw-Hill cular atrophy: various diseases of the muscles, the spinal Professional. cord, the brain, and the many diseases of the peripheral Bradley, Walter G., Robert B. Daroff, Gerald M. Fenichel, and nerves, the neuropathies. C. David Marsden, eds. 2000. Neurology in Clinical Practice. Neuropathies can be classified into mononeu- Boston: Butterworth-Heinemann. ropathies when one restricted area is damaged, polyneu- Origins of Neuroscience: A History of Finger, Stanley. 1994. ropathies if there is damage of the nerves in more areas, Explorations into Brain Function. New York: Oxford University Press. and symmetric neuropathies with bilateral manifesta- Robillard, Albert B. 1999. Meaning of a Disability: The Lived tions. Another classification is according to which type Experience of Paralysis. Philadelphia: Temple University Press. of nerve is involved. Sensory neuropathies account for Temkin, Owsei. 1971. The Falling Sickness: A History of Epilepsy damage to nerves carrying sensory information and from the Greeks to the Beginnings of Modern Neurology, motor neuropathies for those innervating the muscles. 2d ed. Baltimore: Johns Hopkins University Press. Common causes of neuropathy are diabetes and Websites alcoholism. Other causes include mechanical pressure such as repetitive strain injuries, direct damage, toxic National Multiple Sclerosis Society, http://www.nationalmssoci- substances, certain medications, inflammation, ety.org/ Neuroanatomy and Neuropathology on the Internet, http://www autoimmune disorders, and endocrine and hereditary .neuropat.dote.hu/ diseases. Recent diagnostic DNA tests have greatly increased our understanding of the complexities of hereditary neuropathies. ᨘ NEUROPATHY Although there is a wide range of causes, the type of damage to the nerves is limited. The nerve is com- Neuropathy is a loss of the function of nerves. posed of a cell body and a fibrous extension (axon), Symptoms depend on which nerves are damaged. The which conducts electrical nerve impulses. Isolation main motor symptom is weakness, whereas common cells (myelin sheath), which facilitate electrical con- sensory symptoms are numbness, paresthesias (abnor- duction, surround most of the axons. In toxic or meta- mal sensations such as pricking, tickling, burning, or bolic injuries (e.g., diabetes) the axons and the myelin tingling), and pain. Neuropathy is a common neurolog- degenerate, resulting in a numb feeling in the area, the ical disorder resulting from damage to the peripheral so-called sock or glove hypesthesia. Degeneration nerves and thus is more often called peripheral neu- of myelin can be due to hereditary, inflammatory, or ropathy. Peripheral nerves include the nerves branching autoimmune factors and usually shows patchy dam- off the spine, nerves innervating the head and neck age to the myelin sheath. area, and the autonomic nerves regulating functions Treatment of neuropathies involves eliminating or such as blood pressure and motility of the intestines. regulating the causes. Surgery can help when a nerve 1144———Neuropsychiatry is entrapped; optimizing drug treatment is required overlap with other related subfields of psychiatry, in the case of diabetes. Some drugs are prescribed to such as biological psychiatry, in that biological psy- relieve symptoms such as burning sensation, pain, and chiatry attempts to define the biological abnormalities painful contractions of muscles. Physical therapy and that correlate with mental illness in the otherwise splints can also relieve the burden of muscle contractions. normal brains of psychiatric patients. Because of this Some complementary therapies ([electro]acupuncture) difference, patients treated by neuropsychiatrists not can be useful in alleviating symptoms such as pain. only have documented neurological disease but are Most hereditary and autoimmune neuropathies often under the care of a neurologist as well. are incurable and often show a gradual deterioration The overlap with the subspecialty of neurology leading to a lifelong use of a wheelchair or chronic called behavioral neurology is therefore the strongest pain. The impairment of sensory neuropathies, such for neuropsychiatry. However, the differences between as those of diabetes or leprosy, can lead to secondary these two fields are more significant than their overlap. injuries, infection, gangrene, and limb amputation. Pro- Behavioral neurologists diagnose and treat the cogni- viding the means to increase quality of life and improve tive and behavioral disturbances that correlate with the self-image and providing emotional support are critical patient’s documented brain lesions. Neuropsychiatrists for dealing with the disabilities of neuropathy. view these same brain lesions in the context of the patient’s total psychosocial context and also within the —David J. Kopsky and context of the remaining healthy part of the patient’s Jan M. Keppel Hesselink brain function, that is, the patient’s emotional reaction See also Burns; Diabetes; Neurological Impairments and Nervous to his or her brain impairments. In this regard, neu- Disorders; Pain; Repetitive Strain Injuries. ropsychiatry overlaps to some extent with the medical field of physiatry, or rehabilitation medicine, and the Further Readings psychological subspecialties of neuropsychology and Dyck, Peter James. 1993. Peripheral Neuropathy, 2 vols. neurorehabilitation. Philadelphia: W. B. Saunders. Neuropsychology is more concerned with the pre- Halat, K. M. and C. E. Dennehy. 2003. “Botanicals and Dietary cise measurable characterization of both cognitive and Journal of Supplements in Diabetic Peripheral Neuropathy.” emotional symptoms of brain impairment using stan- the American Board of Family Practice 16(1): 47–57. Pascuzzi, R. M. 2003. “Peripheral Neuropathies in Clinical dardized testing materials and structured interviews Practice.” Medical Clinics of North America 87(3): 697–724. to give as complete as possible a cross-sectional view of the patient’s function. Neurorehabilitation concerns Websites itself with the application of new technologies to pro- Neuropathy Association, http://www.neuropathy.org/ mote recovery of brain function or limit the progres- sion of brain disease. Because the neuropsychiatrist has the larger psychosocial picture of the patient in ᨘ NEUROPSYCHIATRY mind and follows the patient longitudinally with rela- tively frequent follow-up visits, the final integration Neuropsychiatry is a nonboarded subspecialty of the of the multifaceted care of the brain-impaired patient medical discipline of psychiatry that focuses on the often falls into the hands of the neuropsychiatrist, treatment of persons whose psychiatric symptoms which triggers an overlap with the legal and ethical appear to be most related to documented brain disease aspects of medicine as a whole. or brain injury. The term neuropsychiatry refers to Therefore, the questions of medical as well as psychiatrists who have had one or more years of financial competency often arise in the course of the postresidency training in a neuropsychiatry fellowship neuropsychiatrist’s longitudinal care of the patient as program or who have had some neurological experi- well as forensic issues related to legal state of mind ence. The qualification, documented brain disease, during impulse dyscontrol in patients with disinhibi- restricts the field of neuropsychiatry and limits the tion due to the progression of their brain disease. This Neuropsychiatry———1145 is particularly true in the treatment of older patients and social disruptions, (5) a postoperative neurosurgi- who suffer from progressive dementias, and this trig- cal patient with delirium and speech impairment, gers another overlap with the psychiatric subspecialty (6) a seizure patient with psychosis and/or depression, of geropsychiatry. Unlike neuropsychiatry, geropsychi- (7) a patient with recurrent seizures, (8) a patient with atry is a fully established board-accredited subspecialty chronic fatigue syndrome and decreased cognitive of psychiatry that specializes in the psychiatric care of function, (9) a patient with a traumatic brain syn- older patients who may or may not have documented drome with an unstable mood and cognitive impair- brain disease but do have psychiatric symptoms. ments, (10) a poststroke patient with apathy, (11) a In the process of treating psychiatric symptoms of patient with both schizophrenia and dementia, (12) a brain-impaired patients, both positive symptoms of patient with Tourette’s syndrome and severe obsessive- delusions and hallucinations and negative symptoms compulsive disorder, and (13) physical violence in a of apathy and neglect, as well as mood symptoms patient with known brain disease. such as hypomania and depression and dysexecutive A major contribution of neuropsychiatry has been symptoms such as poor judgment and impulse the management of the violent patient with known dyscontrol, neuropsychiatrists attempt to make use of brain disease. Neuropsychiatrists have been active the most recent work in integrative (clinical and basic) in treating patients who exhibit patterns of violence neuroscience. This includes neuropsychopharmacol- related to different types of brain lesions. These ogy, neuroimaging techniques such as single-photon- include (1) violence related to hypomanic or manic emission-computed tomography or brain SPECT, behavior after right parietal stroke, (2) impulsive magnetic resonance imaging or MRI with its special- aggression in the setting of congenital brain abnor- ized techniques of functional imaging, magnetic mality or diencephalic injury, (3) reflexive aggression resonance angiography, and diffusion tensor imaging, to transient environmental stimuli in patients with as well as positron-emission tomography or brain dementia, (4) violence emanating from a dysexecutive PET imaging, with radioligand binding, electroen- syndrome due to prefrontal cortical disease, (5) vio- cephalography including EEG (electroencephalo- lence related to deepened affect or delusive ideation graphic), MEG (magnetoencephalographic), QEEG in patients with temporolimbic epilepsy, and (6) vio- (quantitative EEG), and EPs (evoked potentials), clin- lence in childhood abuse victims who have experi- ical neurogenetics, neural network theory, and med- enced traumatic brain injury. Carefully crafted ical informatics databases. In using these sources of combinations of beta-blockers, anticonvulsants, antipsy- clinical information, the neuropsychiatrist must rely chotics, serotonin re-uptake inhibitor antidepressants on the expertise of the established practitioners, such or SSRIs, and psychostimulants have been used to as the neuroradiologist and the electrophysiologist, enhance cortical control of limbic circuits for these but because the neuropsychiatrist knows the larger patients. Decreasing the frequency and intensity of history and psychosocial context of the patient and violent behavior in these patients is essential to effec- has generally spent more time with the patient in the tive nursing care and rehabilitation as well as outpa- clinic, it becomes his or her responsibility to make tient management. optimal use of this information in guiding the overall Neuropsychiatrists have helped to significantly treatment plan. reduce morbidity in stroke patients. Stroke is the third The following are some examples of clinical prob- leading cause of mortality and morbidity in North lems that might be managed by a neuropsychiatrist: America. More than 20 percent of stroke victims (1) a Parkinson’s patient with delusions and halluci- become severely depressed, greatly complicating their nations on high doses of dopamine-enhancing med- rehabilitation. Neuroimaging studies suggest that ications, (2) a Huntington’s patient exhibiting violent infarction of the left anterior cortex as well as left behavior and personality changes, (3) a developmen- rostral prefrontal cortex and left rostral caudate area tally disabled patient exhibiting self-injurious behav- carry the greatest risk for poststroke depression. ior, (4) a dementia patient who is causing behavioral Vascular dementia is also receiving the attention of 1146———Neuropsychology neuropsychiatry with extensive use of psychoactive ᨘ NEUROPSYCHOLOGY agents especially anticholinesterase inhibitors to enhance cognitive function. Early treatment of stroke Neuropsychology is the study of brain-behavior and vascular dementia patients with antidepressants relationships. Clinical neuropsychology is an applied and psychostimulants can substantially increase their science dealing with the behavioral manifestation of success at rehabilitation. Also, since the psychiatric brain dysfunction. Neuropsychological evaluation symptoms in vascular dementia can often be more dis- therefore entails assessing the various psychological/ abling than the cognitive deficiencies, the neuropsy- behavioral functions governed by the brain. Evalua- chiatrist can play a substantial role in improving the tions are useful in differential diagnosis among simi- patient’s overall function. Neuropsychiatrists are also larly appearing neurological disorders or between taking an active role in the treatment of other demen- psychiatric and neurological conditions. Neuropsycho- tias particularly Lewy body dementia, which often logical assessments often serve as the nucleus of presents with delusions and mood instability, and rehabilitation and educational intervention plans frontotemporal dementia, which frequently presents and are instrumental in the evaluation of their with anxiety, obsessions, and delusions. The patient’s effectiveness. quality-of-life issues with these dementias often As with all psychological evaluations, neuropsy- depend on the effective control of their psychiatric chological assessment involves a process of answer- symptoms. ing clinical questions and responding to unique clinical situations that vary somewhat from patient to —Thomas Jobe patient and across practice settings. The clinical See also Delirium; Dementia; Epilepsy; Neurological Impair- application of neuropsychological principles can be ments and Nervous Disorders; Parkinson’s Disease; Psychi- used to determine the etiology and behavioral conse- atric Disorders; Psychiatry; Schizophrenia; Stroke; Traumatic quences of disabling conditions, as well as provide Brain Injury; Violence. medical, rehabilitation, and psychiatric treatment recommendations. Treatment intervention is also an Further Readings important and developing area within the specialty of Mueller, J. and B. S. Fogel. 2000. “Neuropsychiatric Assessment.” neuropsychology. Pp. 2–16 in Synopsis of Neuropsychiatry, edited by B. S. Lezak (1995) delineated four knowledge Fogel, R. B. Schiffer, and S. M. Rao. New York: Lippincott Williams & Wilkins. areas important for neuropsychological practice: Raine, A., T. Leucz, and A. Scerbo. 1995. “Antisocial Behavior: (1) clinical psychotherapeutic and assessment skills, Neuroimaging, Neuropsychology, Neurochemistry.” Pp. 50– (2) psychometrics, (3) neuroanatomy and functional 78 in Neuropsychiatry of Personality Disorders, edited by neuroanatomy, and (4) neuropathologies and their J. J. Ratey. Cambridge, MA: Blackwell Scientific. behavioral effects. A fifth important knowledge area Silver, J. M., R. E. Hales, and S. C. Yudofsky. 1991. “Depression is a theoretical understanding of how the previous in Traumatic Brain Injury.” Neuropsychiatry, Neuropsychol- ogy, and Behavioral Neurology 4:12–23. four content areas interrelate and interact. Such a Trimble, Michael. 1991. “Interictal Psychoses.” Pp. 109–149 in conceptual framework helps the neuropsychologist The Psychoses of Epilepsy, edited by M. Trimble. New York: integrate the historical information, medical mater- Raven. ial, current cognitive abilities, and general psycho- Weinberger, D. R. 1993. “A Connectionist Approach to the logical functioning; provide an accurate description Pre-Frontal Cortex.” Journal of Neuropsychiatry and Clinical of a person’s cognitive strengths and weaknesses; Neurosciences, 5:241–253. arrive at correct diagnoses (etiological conditions Websites and anatomic location); outline the implications of the results for that person’s functional living poten- International Neuropsychiatric Associations links, http://www. inaweb.org/links.asp tial; formulate prognostications; and make clinically Journal of Neuropsychiatry and Clinical Neurosciences, http:// useful recommendations or design appropriate treat- intl-neuro.psychiatryonline.org ment interventions. Neuropsychology———1147

NEUROPSYCHOLOGICAL ASSESSMENT generally be evaluated in most comprehensive neuropsychological evaluations. Frequently, aspects There are three general reasons for conducting a of psychological functioning (i.e., psychopathology, neuropsychological evaluation: differential diagnosis, behavioral adjustment, and interpersonal issues) also are patient care, and research. The first step in the assess- included in a neuropsychological evaluation. ment process is defining the questions that need to be Neuropsychological evaluation differs from other answered to meet particular clinical needs. Next, the neurodiagnostic procedures such as computed tomog- neuropsychologist must determine what information is raphy (CT) or magnetic resonance imaging (MRI) required and how best to obtain it. Neuropsychological scans that examine the anatomical structure of the testing might be only one of several methods used. In brain. With a neuropsychological evaluation, cognitive fact, a psychological test is simply a sample of behavior capabilities, from which inferences about the brain obtained under controlled or standardized conditions. and its function can be derived, are examined. In this Other methods of obtaining information about a regard, it is similar to neurodiagnostic tests that assess person’s past and present behavioral capabilities include other functional capabilities of the brain. For example, the case history, clinical interview, mental status exami- the electroencephalogram (EEG) and event-related nation, direct behavioral observations, and reports of potentials (ERPs) measure the electrical activity of the other people who are involved with the patient (e.g., brain, and positron-emission tomography (PET) scans spouse, children, friends, employer, and other profes- or single-photon-emission-computed tomography sionals such as nursing staff or rehabilitation therapists). (SPECT) scans assess anatomical patterns of cerebral If testing is to be conducted, then test selection must be blood flow or metabolic activity. Among these, the competently addressed. Structuring the testing session, neuropsychological evaluation is the only neurodiag- administration procedures, scoring, and clerical issues nostic procedure that can evaluate how a person cogni- also are important factors in the overall competent com- tively and behaviorally functions in real life. pletion of the data collection phase of the evaluation Neuroimaging studies may review a location of dys- process. Following data collection are the interpretation function, but two people with damage in the same and application phases of the evaluation process. brain region may have different behavioral manifesta- A wide variety of cognitive and intellectual abilities tions of that damage. Neuropsychological examina- are typically assessed during a neuropsychological eval- tions can identify and quantify those differences. uation. These include attention and concentration; learn- Neuropsychologists must be aware of the anatomic ing and memory; sensory-perceptual abilities; speech considerations and behavioral sequelae associated and language abilities (sometimes including academic with various etiological conditions in the evaluation skills such as reading, spelling, and math); visuospatial and interpretation of data. For example, some cogni- and visuoconstruction skills; overall intelligence; execu- tive functions depend on well-defined anatomic struc- tive functions (such as abstraction, reasoning, problem tures (e.g., lower-level sensory-motor skills and even solving, behavioral self-monitoring, response discrimi- higher-level perception such as recognition of familiar nation, selection, inhibition, and mental-processing faces dependent on functions of the sensory-motor efficiency and flexibility); and psychomotor speed, strip and bilateral basal occipital-temporal regions, strength, and coordination. Included are measures of respectively). Other abilities (e.g., new learning, sensory-perceptual input, the two principal central pro- abstract reasoning, and speed of information process- cessing systems (verbal-language and nonverbal- ing) are diffusely organized or rely on complex inter- visuospatial), executive organization and planning, and acting cortical and subcortical networks. The effects response output (motor abilities). Underlying them all of brain injury can result not only in deficits in vari- are attention, concentration, arousal, and motivation. ous cognitive abilities but also in the emergence of Although this list of cognitive functions might be new behaviors or symptoms such as perseverations, organized or labeled differently by different neuropsy- unilateral neglect, or confabulations. Furthermore, chological schools of thought, these behaviors would congenital conditions (e.g., hydrocephalus, renal 1148———Neuropsychology disease, William’s syndrome) can result in similar In rehabilitation settings, neuropsychologists are most deficits that result in learning disability and atten- typically asked to detail and quantify a given patient’s tional disorders manifested in infancy and childhood. cognitive deficits, as well as explain how these deficits may affect the patient’s daily life. Neuropsychologists help identify deficits that would be amenable to treat- NEUROPSYCHOLOGICAL ment and identify behavioral capacities that remain rela- INTERVENTIONS tively intact and potentially useful in a compensatory In addition to neuropsychological evaluations, many fashion for other impaired cognitive functions. Finally, neuropsychologists also provide intervention services. the neuropsychologist is asked to make treatment rec- The neuropsychologist is informed by general psycho- ommendations. These recommendations are typically for logical principles and knowledge of adjustment issues immediate treatment purposes (e.g., while the patient is and mental health disorders, as well as by the influence in the rehabilitation treatment facility) as well as more of brain-behavior relationships on psychological and long-term issues (e.g., are the deficits likely to improve, behavioral functioning. Treated patient populations can the patient drive safely, can the patient return to work include the spectrum of medical, neurological, and or school). In educational settings, neuropsychological psychiatric disorders. Interventions often focus on evaluations can be important in identifying different adjustment, coping, and adaptation issues but may also learning disabilities, serve as an important ingredient involve attempts to remediate the adverse cognitive in designing treatment and/or educational plans and in or psychological effects of various neurological disor- setting realistic goals, and help evaluate the effectiveness ders. Treatments include adjustment counseling, of various treatment interventions. cognitive-behavioral therapy to deal with the emo- Neuropsychological evaluations continue to play tional and psychological consequences of various an important role in the differential diagnosis between neurological or medical conditions, cognitive rehabili- neurological and psychiatric conditions that may tation therapies designed to enhance recovery or adap- appear clinically similar (e.g., dementia vs. a pseudo- tation to cognitive limitation from various disorders, or dementia secondary to depression or anxiety) but that family/marital therapy. have different prognostic implications and require divergent treatments. Finally, neuropsychological eval- uations are appearing with increasing frequency in DIFFERENT PRACTICE SETTINGS forensic settings where they are used to help document the presence or absence of behavioral impairments As the field of neuropsychology has grown, practice secondary to injuries (personal injury or medical settings have diversified. Neuropsychological evalua- malpractice cases) or in helping to evaluate issues of tions historically have been used to help determine diminished capacity or disability and competency. lesion location in neurology and neurosurgical settings. That function has decreased in importance with the —Rodney D. Vanderploeg and advent of such neuroradiological procedures as CT and Heather Belanger MRI scans. However, evaluations remain a frequently See also Dementia; Psychiatric Disorders; Psychology; Traumatic requested procedure to help identify the pattern and Brain Injury. severity of deficits associated with various brain lesions or neurological conditions. Neuropsychological evalua- Further Readings tions are often an important factor in helping medical Grant, I. and K. Adams, eds. 1996. Neuropsychological Assessment staff, patients, and families make decisions about treat- of Neuropsychiatric Disorders, 2d ed. New York: Oxford ment issues and placement after hospitalization. They University Press. are also important in educational planning and treat- Heilman, K. M. and E. Valenstein, eds. 2004. Clinical Neuropsychology ment planning for children with developmental and , 4th ed. New York: Oxford University Press. Kolb, B. and I. Q. Whishaw. 2003. Fundamentals of Neuropsy- other disabilities. The assessment contributes to the chology, 5th ed. New York: W. H. Freeman. diagnosis of subtle disabilities and clarifies the nature of Lezak, M. D. 1995. Neuropsychological Assessment, 3d ed. any cognitive problems underlying learning disabilities. New York: Oxford University Press. Nietzsche, Friedrich (1844–1900)———1149

Vanderploeg, R. D., ed. 2000. Clinician’s Guide to Neuro- research has focused on treatment and disability psychological Assessment, 2d ed. Mahwah, NJ: Lawrence prevention in psychotic states and mood and anxiety Erlbaum. disorders, and fewer resources have been devoted to the Websites issue of neurotic illness. However, cognitive-behavioral approaches to anxiety, phobia, and dysthymia have led Neuropsychology Central, http://www.neuropsychologycentral. com/ Neuropsychology links, http://www.neuropsych.com/Links.htm to good symptom improvement and time will tell if the associated disability will diminish with treatment. Also ᨘ the improvement in anxiety phobia and dysthymia seen NEUROSIS with the newer antidepressant medications suggests that neurotic illness may also share an organic substrate Sigmund Freud’s early work with neurotic patients with the mental illnesses. Psychoanalysis continues to was in a population that was totally disabled and be used to treat a variety of neurotic illnesses especially dependent on others for care. Conversion hysteria was when less intense and demanding treatment strategies reportedly rampant in Europe at the end of the nine- have failed. teenth century, and Freud’s work as a neurologist exposed him to a large number of cases of total disabil- —Dennis Beedle ity where no clear-cut organic etiology was evident. See also Anxiety Disorders; Behavior Therapy; Hysteria. Neurotic patients with phobias, conversion symptoms, hysteria, obsessions, repetition compulsions, and inhi- Further Readings bitions then and now range in functional level from Ford, C. U. and D. G. Folks. 1985. “Conversion Disorders: An highly successful to very disabled. The most severe Overview.” Psychosomatics 26(5): 371–374, 380–383. cases are totally dependent on others for care and are Hartocollis, P. 2002. “Actual Neurosis and Psychosomatic still seen in long-term care facilities. Neurotic patients Medicine: Vicissitudes of an Enigmatic Concept.” International overlap with patients with personality disorders, and Journal of Psychoanalysis 83:1361–1373. Russo, J., W. Katon, E. Lin, et al. 1997. “Neuroticism and symptoms usually have a greater effect on the individ- Extraversion as Predictors of Health Outcomes in Depressed ual than on his or her friends and family. Some cases Primary Care Patients.” Psychosomatics 38(4): 339–348. of conversion hysteria are still seen and may be more common in certain cultural settings. These patients, as Websites a hundred years ago, are dependent on others, often Mental Health Matters, self-help and psychology information and family, for basic care and are disabled without clear resources, http://www.mental-health-matters.com evidence of depression or psychosis. The extent of disability due to neurotic illness is ᨘ NEW ZEALAND difficult to quantify as the concept of neurosis has been replaced by a more descriptive diagnostic system. In See Experience of Disability: New Zealand the past, anxiety neurosis or panic attacks would have been seen as clearly disabling neurotic illness. For example, students who are unable to succeed due to ᨘ NIDRR neurotic issues often may end up underemployed rather than fully disabled. Adaptation to other illnesses is also See National Institute on Disability and an area where degrees of neuroticism may increase Rehabilitation Research (United States) disability. Pseudo-seizures are a condition in which the patient usually unconsciously feigns a very realistic ᨘ seizure episode witnessed by others. They continue to NIETZSCHE, FRIEDRICH be a cause of diagnostic confusion and often are found (1844–1900) in patients who suffer from genuine organic-based German philosopher seizures. Disability post-myocardial infarction is also increased in patients with depression and preexisting Friedrich Nietzsche, the enfant terrible of Western neurotic illness. Currently, much of organized psychiatric philosophy and culture, is usually hailed as the greatest 1150———Nirje, Bengt (1924– ) forerunner of twentieth-century intellectual innovations, itself. To be sure, this does nothing to erase the prejudice from psychoanalysis to postmodernism to cultural cri- from his texts, although it does a lot to emphasize its tiques of various stripes. Reared in pre-Bismarckian untenability. Germany, he quickly became its most vociferous critic —James I. Porter and exile. His public debut began with an éclat over The Birth of Tragedy out of the Spirit of Music (1872) Further Readings that cost him his reputation as the rising young star of classical philology at Basel. Thereafter, he drifted Mitchell, David T. and Sharon L. Snyder. 2000. Narrative Prosthesis: Disability and the Dependencies of Discourse. off into increasingly unruly and shrill philosophical Ann Arbor: University of Michigan Press. and cultural writings, but never found much of an Nordau, Max Simon. [1892] 1993. Degeneration. Lincoln, NE, audience until shortly after his death. Once the darling and London: University of Nebraska Press. of the Right, he remains the darling of the Left and an inspiration to all counterculturalists. His writings are treacherous things, open to mis- ᨘ reading and misappropriation. As in other matters NIRJE, BENGT (1924– ) (such as questions of race, gender equality, power, and Swedish activist violence), so too here Nietzsche can easily be taken to task for his merciless indictments of human disability. Bengt Nirje is internationally known for his work After all, doesn’t he declare the better part of human- in promoting self-determination among people with ity shriveled and impaired, both psychologically and intellectual disabilities. Born in Sweden and educated physically, and for that reason unworthy of life and in comparative literature, law, and philosophy, Nirje’s hence worthy of extermination? And wasn’t he from first work with people with disabilities was with the the first happy to view ugliness and deformity as sure Swedish Red Cross and later with the United Nations signs of degeneracy—as, for instance, in his lifelong where he was a welfare coordinator. As director of the crusade against Socrates, that “monstrosity per defec- Swedish Parents’ Association for Mentally Retarded tum”? In that case, one would have to attribute to Children (1961–1971), he formed social clubs for Nietzsche not only a distasteful prejudice but some- persons with intellectual disabilities. These social thing like a pathological obsession. Max Nordau’s clubs gave people with intellectual disabilities oppor- ([1892] 1993) inclusion of Nietzsche in his gallery of tunities to exercise control over their leisure activities, European degenerates seems all too justified. including the right to take risks and make mistakes. Nevertheless, several factors tell against these Nirje was deeply concerned with the lack of power conclusions. First, Nietzsche’s true meaning is notori- and participation in normal community life experi- ously hard to locate amid the polyphony—or cacoph- enced by people with intellectual disabilities. His ony—of his writings. Second, much of the time work to formalize the principle of normalization led to disability, like disease and weakness, seems to be a the first English publication on the principle in 1969. metaphor for culture, not a reference to the empirical This paper was highly influential throughout the body or to nature. “Nothing is beautiful” or “ugly” Western world, particularly with respect to residential intrinsically, “there is no health as such [an sich],” and care and treatment of people with intellectual disabil- even the infirm demonstrate a will to life and to power ities. Nirje’s legal advocacy has resulted in the enact- that has to be affirmed and admired, yet everyone ment of progressive legislation and policies reflecting alive is diseased. How stable is Nietzsche’s apparent the concept of normalization throughout Europe and indictment of disability and disease? If his prescrip- North America. Nirje is one of the founders of the tions were taken seriously, the entire human race self-advocacy movement. would have to be eradicated. A likelier conclusion —Katherine E. McDonald is that Nietzsche is embarrassing, not perpetuating, a widespread cultural idiom, by bending it back upon See also Niels Erik Bank-Mikkelsen; Normalization. Normality———1151

Further Readings Further Readings Nirje, B. 1969. “The Normalization Principle and Its Human Encyclopedia of Tamil Literature. 1990. Vol. I: 15–16, 88, 353, Management Implications.” In Changing Patterns in 397–398; II: 86–87, 237, 441; III: 504, 556. Thiruvanmiyur, Residential Services for the Mentally Retarded, edited by Madras, India: Institute of Asian Studies. R. Kugel and W. Wolfensberger. Washington, DC: President’s Shulman, David. 1985. Pp. 88–94, 373–379 in The King and Committee on Mental Retardation. the Clown in South Indian Myth and Poetry. Princeton, NJ: ———. 1970. “Symposium of ‘Normalization’: The Normalization Princeton University Press. Principle—Implications and Comments.” Journal of Mental Zvelebil, Kamil B. 1974. Pp. 223–224 in Tamil Literature. Subnormality 16:62–70. Wiesbaden: Otto Harrassowitz. ———. 1985. “The Basis and Logic of the Normalization Principle.” Australia and New Zealand Journal of Developmental Disabilities 11:65–68. ᨘ NORMALITY ———. 1999. “How I Came to Formulate the Normalization Principle.” In A Quarter Century of Normalization and Defining normality has presented a puzzle to medicine Social Role Valorization: Evolution and Impact, edited by R. Flynn and R Lemay. Toronto: University of Toronto and society for decades. Health and normality remain Press. obscure concepts particularly in the medical field, which is historically reductionistic and its practitioners trained to recognize and treat pathology. Constructing concepts ᨘ of normality requires philosophic inquiry as well as NONTI NATAKAM experience with general populations of people rather (TAMIL CRIPPLE DRAMA) than those presenting only for treatment. As public policy has developed around concepts of disability, the The nonti natakam (cripple drama), also sometimes implications for definitions of normality are profound. ottraikkaal natakam (one-legged drama), is a genre of The word normality derives from the Latin word Tamil drama or street theater originating in southeast- norma, which referred to a tool used to show a square ern India in the seventh century or earlier, having a angle and by extension to mean a rule, standard, or lame rogue as hero. The protagonist becomes principle. Over time, the definition of normal came obsessed with a prostitute, engages in crime to fund to mean ordinary, usual, or “naturally occurring.” the habit, is caught stealing a horse, and is punished Interestingly, if one applied the “naturally occurring” by amputation of a leg (sometimes also an arm). Next definition, many individuals born with “anomalies” or he comes under the influence of a holy man, “birth defects” or with behaviors different from renounces evil, and regains his limb(s) by intervention mainstream could be considered normal. But most of the god Subramaniya (Murukan). This provides a societies did not take this definition. Instead, a depar- serious frame while lending itself to bawdy, slapstick, ture from the typical physical or behavioral character- and farce as the hero hops about on one leg recount- istics was usually seen as abnormality or deviance. ing his sexual and criminal adventures. Disability is Although terms such as normal and normality clearly portrayed as a consequence of wrong conduct, serve some purpose in medicine and the study of from which repentance leads to healing. There are human behaviors, they also perpetuate labeling and also nonti natakam giving Muslim or Christian discrimination. The utility of the normality concept accounts of similar themes in southern India. These can be seen in how it benefits or contributes to the minor dramas can also be linked to broader themes well-being of and services to the full range of human of bandit heroes and kings with physical deformities beings. Several attempts at defining normality are in Tamil literature, as well as with East Asian and worth reviewing to examine examples of traits felt European medieval farce. to be abnormal. Two different models to normality —Kumur B. Selim relevant to disability are the medical and social. Both have merits as well as limitations; attempts at inte- See also Drama and Performance. grating these models would be useful. 1152———Normality

Offer and Sabshin (1980) reviewed four perspec- general, an ideal fiction.” This perspective highlights tives on normality, originally designed for purposes of the ideal form and being, and it recognizes the diverse, examining mental health. These perspectives are interrelated mechanisms that define functionality. rooted primarily in the medical model but allow an A third perspective is the one most commonly used attempt at integration with the sociological. In their in medicine today: normality as average, based on the first definition, normality as health, normality is seen principle of the bell-shaped distribution around a cen- to exist in the absence of disease in terms of notice- tral point where the greatest number (median) or aver- able pathology and corresponds to medicine’s concern age (mean) of findings (e.g., height, weight, IQ) occur. with treating patients with observable signs and symp- Various statistical measures further define deviance toms of illness. Such a perspective tends to be binary from this center point with boundaries that encompass and reductionistic: One is either normal or has a dis- various percentages of population (e.g., 2/3, 98 per- ease. This view obscures the continuum of physiology cent). By such methods, one can look at the “tails” or and functionality that exists in almost every human outliers in this normal distribution as being so many physical and mental attribute. More important, this standard deviations away from normal. If one mea- view does little to advance the principles of preven- sures vitamin C intake as an example, this method tion or early intervention in the pathological progres- captures disease state but also reflects subclinical sion of an altered physiological state. deficiencies. A good example of the weakness of this approach While there are many limitations to normality as is seen in the evolution of fetal alcohol syndrome average, there is also inherent value over other defini- (FAS) in the past two decades. Physicians first diag- tions of normality. Using this definition and applying nosed that condition by a set of criteria including it to medicine can define illnesses such as coronary appearance (small head/body, certain facial character- artery disease, obesity, and blindness better than istics), behavioral disorder such as attention deficit, simply deciding when one has it or does not. For heart defects, sight/hearing problems, and joint anom- example, using a continuum model, we can see that alies. Useful as this diagnosis is, it did not draw suffi- adolescents start depositing plaque on their arteries cient attention to the fact that maternal alcohol use and that this process continues through life. This can be hazardous to the developing fetus. In fact, low allows intervention at any level as well as monitoring levels of maternal alcohol intake, below that seen in for later intervention. Similarly, an individual did not typical FAS, can cause milder problems for the fetus become morbidly obese (defined as twice one’s “ideal and newborn child. weight”) overnight. There was a progression, likely Vitamin deficiency is another good example in started in childhood, whereby the individual gradually which a disease state (e.g., scurvy from the absence of gained weight to the point of severely limiting mobil- vitamin C) obscures the wide variation in vitamin C ity and causing added health risks. Similar examples intake and blood levels, some of which are danger- of this continuum of a trait can be found for vision, ously low and interfere with optimal functioning, but blood sugar levels, intelligence, movement, height, not to the extent of meeting the criteria for disease. and many other traits that appear first in “normal” Clinical medicine sometimes recognizes this problem form before becoming pathological. by employing the term subclinical disease, again A variation on normality as average is to consider trying to use categorical distinctions rather than a con- two bell-shaped curves, one representing the distribu- tinuum model, which would show the range of tion of a characteristic, for example, hearing acuity of vitamin C levels and note the points within that range individuals with known hearing impairment, and com- where various symptoms of pathological processes pare them with a representative group from the gen- may emerge. eral population without known or perceived hearing A second perspective is normality as utopia. Offer loss. The hearing-impaired group will have a narrower and Sabshin (1980) date this idea back to Sigmund curve that will overlap with individuals in the general Freud, who wrote, “A normal ego is like normality in population on one end of the curve. This overlap Normality———1153 consists of a group of individuals who may not be treated, and rehabilitated along with prognostica- diagnosed as having hearing loss, but indeed show the tions that often emphasize the negative. What the common characteristic of hearing reduction with age. social model often lacks, however, is a view of how An interesting part of this example is that such hear- the individual interacts with changing societal values ing loss with age is considered part of “normal aging.” and how technology, medicine, and changing social The continuum method allows for interventions norms interact to determine the extent to which dis- and prevention as can now be seen with worldwide abled people can navigate through society and the attention to the diets of children in Western countries extent to which they are viewed as “normal.” In dif- and its relationship to adult obesity. However, when ferent times and cultures, individuals with auditory or certain conditions or traits are congenital or currently visual hallucinations have been viewed as having dis- irreparable (e.g., Down syndrome), intervention or tinct talents and have been seen as healers or savants. prevention to a more “normal” state is not always pos- At other times, these individuals have been viewed as sible, and using this as a benchmark might be damag- dangerous and valueless to society. Similarly, people ing to a disabled individual. with seizure disorders have been seen as having spe- A final perspective is normality as a transactional cial gifts and vision; conversely, such people also have system that recognizes that behavior or traits cannot been viewed as incapable of the most basic tasks be examined by themselves but only in the context of including driving. other systems. It also implies that culture and context The industrialization and urbanization of society help determine what we define as normal: How and also affect the view of disabled people as normal or what we consider normal varies over time and space, abnormal increasing the requirements for social main- with values shifting according to culture, gender, ethnic- tenance and employment. Individuals with schizo- ity, national origin, and age. phrenia reportedly do better in developing nations and The social model of disability holds that it is society agrarian areas in part because these societies have that defines, stigmatizes, and discriminates against the roles in which the person can fit and provide some disabled by setting norms for and values on physical sense of belonging and utility within their community. appearance and behaviors. This reasoning leads to the Three features of human existence are frequently conclusion that it is not the physical aspects of the the subject of controversy and labeling: physical char- person, per se, that lead to damage. Rather, when a acteristics, cognitive/learning capacity, and behavior. society or culture labels disabled bodies as inferior or One common characteristic that illustrates the many diseased, it leads to reduced self-worth as well as deval- uses and misuses of normality is weight. What is uation and marginalization in society. The social model viewed as ideal or normal body size has shown conceives of bodies as bearers of differing value as tremendous variation over time and place. In Western defined by society that acknowledges and distributes society, being “stout” or obese by current standards economic and social capital depending on these values. was formerly a sign of good health and wealth. Since People with speech impediments, for example, are access to a good food supply had been for millennia a made to feel inferior, which directly affects their social sign of one’s status in many societies, appearing too interactions, often reduces their capacity to get around lean suggested poverty or ill health. Today in Western in the world, and clearly limits their employability. society, “thin is in” to the point of encouraging youth Social practices from genetic testing and subsequent to be anorexic and to where liposuction to remove abortion to devaluations of disabled people through- fat is very big business. While this culture of starva- out childhood and adult life reflect a social definition tion applied primarily to women over the past three of normality that can marginalize disabled people and decades, it now also affects men. However, in many reduce their sense of self-worth. non-Western societies women are desired for being The social model is critical of the medical model, more full bodied, and there is likely a relationship which is seen as objectifying and reducing the body between this and fertility. Chinese society has been to objects and conditions to be analyzed, diagnosed, characterized as being very tolerant to the point of 1154———Normality extolling the virtue of fatness in men as they age; distinguish the two. Binet calculated the normal recent studies show that in China this is also true for abilities for students at each age, resulting in a tool to women and interestingly, obese men and women identify the developmental age of each student. among elderly Chinese have lower rates of depressive The idea that a test could determine a child’s “mental symptoms. Morbid obesity carries considerable age” became extremely popular. Just before World War I, stigma and prejudice in many countries. It is also German psychologist Wilhelm Stern suggested a better associated with varying disability such as decreased way of expressing results than by mental age. Stern deter- ambulatory capacity, and when the morbidly obese mined his results by finding the ratio between a subject’s person enters into health care their providers frequently chronological age and mental age. A 10-year-old scoring mirror these societal attitudes. one year ahead of chronological age (110) would be less Cognitive capacity, particularly as measured by significant than a 5-year-old scoring one year above her intelligence testing, has survived a storm of attacks chronological age (120) would. Later an American psy- based in part on how we measure and react to defini- chologist, Lewis Terman, coined the term intelligence tions of normal intelligence. The concept that intelli- quotient (IQ), identifying 100 as average. This method of gence could be or should be tested began with a IQ testing was first put to mass use in placing draftees in nineteenth-century British scientist, Sir Francis World War I in the United States. After the war, many Galton, who had training in both biology and early companies and most school systems in the United States forms of psychology. Galton was strongly influenced began using some form of IQ testing. by the revolution caused by the 1859 publication of The designers of IQ testing had reservations on Charles Darwin’s The Origin of Species, which exam- the potential misuse of testing. As early as 1922, a well- ined the relationship between heredity and human known social commentator, Walter Lippmann, wrote: ability or disability. The general attitude of the time “One only has to read around in the literature of the held that the human race had a very small number of subject...to see how easily the intelligence test can be both geniuses and idiots, while the vast majority of turned into an engine of cruelty, how . . . it could turn the human race comprised equally intelligent people. into a method of stamping a permanent sense of inferi- This thinking is typical of the binary method of med- ority upon the soul of a child.” With the beginning of icine, which divided the population into disease or the civil rights movement, the potential misuse of IQ normal with the variation of adding “supernormal” or testing for racist purposes became apparent initially geniuses in this case. Galton believed that mental with African Americans and later Latinos. Questions traits are based on physical factors—inheritable about the reliability and validity of testing and the role traits—the same as eye color or blood type. With the of heredity versus environmental enrichment and lan- help of a statistician, Galton discovered the concept of guage curtailed the widespread usage. However, school normal distribution or the bell-shaped curve, with systems still use IQ testing as one factor in determining most of the population falling between two extremes. the need for special education. Such usage might be He published his ideas on hereditary intelligence in a valuable, but the stigma associated with the testing book titled Hereditary Genius, which is recognized implies that students placed this way are innately less as the first scientific investigation into the concept of intelligent and, more critically, may never be capable of intelligence. James McKeen Cattell, a student of being “mainstreamed” back to regular classrooms. Galton’s, led a brief and intense period of intelligence The concept of intelligence and its measurement testing in the United States; this testing quickly fell has continued to evolve, despite problems and testing into disfavor when it was shown that scoring high misuses. In 1983, Howard Gardner argued that “reason, on the Galton test did not predict whether a student intelligence, logic and knowledge are not synony- would do well on schoolwork. In France, Alfred Binet mous,” setting forth a theory of multiple intelligences. devised tests of intelligence and used them to compare Gardner defined seven distinct intelligences: logical- “average” students with known “mentally handi- mathematical, linguistic, spatial, musical, bodily- capped” students. He found that certain tasks could kinesthetic, intrapersonal, and interpersonal intelligences. Normality———1155

The concept of multiple intelligences helped broaden eighteenth century, a sentence that Thomas Jefferson the idea of intelligence from a mathematical and ver- changed to castration in 1779. bal understanding to one where many inherent abili- By the close of the nineteenth century, medicine, ties of humans may be considered and valued. Implicit including the newly developed field of psychiatry, was in this approach is that disability in one area of intel- competing with religion and law over which had juris- ligence may not be associated with other areas, or diction over sexuality in general and homosexuality in more practically, individuals with certain mental dis- particular. As with the medicalization of alcoholism, ability may also have rich, useful, and enriching this was progressive, as a “sick person” was better capacities in other mental areas. than a sinner or criminal. Classifying behaviors as abnormal poses a very Some forces within psychiatry were more liberal difficult problem for sociologists, anthropologists, in their view of homosexuality. In 1901, Havelock and cross-cultural psychologists, and it again begs the Ellis considered homosexuality to be inborn and question of the value of such classifications. Within therefore not a disease. He also recognized the con- most cultures, there are individuals who are so out tribution homosexuals made to society. Sigmund of sync with the accepted range of behaviors that they Freud saw all humans as innately bisexual and their pose a threat to themselves or others. Inherent in the sexual preference was made according to experi- act of classifying behaviors is the use of of ences in early development. While he advised behavioral descriptions as an instrument to define acceptance, he noted that homosexuality stemmed and therefore punish, exclude, or incarcerate a group from arrested development. In his “Letter to an whose behaviors constitute a threat to the status quo American Mother” (1935), Freud, in keeping with or to the local governance. his view of psychoanalysis toward promoting men- For example, homosexual behaviors were frequent tal health through self-understanding, wrote about parts of polytheistic and pagan ceremonies, and it is homosexuality: likely that homosexual practices were condoned in early societies. The ancient Greeks welcomed homo- If [your son] is unhappy, neurotic, torn by conflicts, sexuality along with other hedonistic behaviors, inhibited in his social life, analysis may bring him though marriage and producing children held higher harmony, peace of mind, full efficiency whether he value, making it “normal” only as an occasional activ- remains a homosexual or gets changed. ity for young boys or for older men after they pro- duced children. Interestingly, the Greek military Psychiatry and psychoanalysis did not always viewed homosexuality as positive in that it encour- follow Freud’s more accepting view. In the 1940s to aged morale and camaraderie. However, men who the early 1960s, these fields developed complex were exclusively passive partners in homosexual developmental theories explaining the pathological encounters were stigmatized and even banished from development leading to homosexuality. Alfred the military as having become women. By the sixth Kinsey’s empirical studies of sexual behaviors of century, the popularity and power of Christianity led Americans revealed findings that could not be dis- to condemnation of homosexuality as well as prostitu- cerned by clinicians working exclusively with indi- tion and other hedonistic activities, although little was viduals seeking their services. His studies revealed done to enforce this code even among priests and that a significant number of his research participants monks. Tolerance of homosexuality continued in most reported having engaged in homosexual behavior to of Europe in certain circles until about the thirteenth the point of orgasm after age 16 and that 10 percent century. The Inquisition and the Protestant Reformation of the males in their sample and 2 to 6 percent of the resulted in strong penalties in different European females (depending on marital status) had been countries including castration, imprisonment, and more or less exclusively homosexual in their behav- death. The death penalty for “sodomites” was imposed ior for at least three years between the ages of 16 in the United States by the military as early as the and 55. 1156———Normality

The Diagnostic and Statistical Manual of Mental policy in the Soviet Union, the practice was discontin- Disorders, second edition (DSM-II, 1968) of the ued. Unlike the case of homosexuality where psychi- American Psychiatric Association (APA) listed homo- atry was used to bolster general public opinion, the sexuality as a disorder, but the DSM-III (1975) did mislabeling of dissidents as schizophrenics was not not. This change in thinking was supported by insid- in concurrence with society but was enforced by the ers within the APA but also was in response to grow- existing regime. ing numbers of gay and lesbian advocates who Psychiatry’s role in defining normal behavior is protested and disrupted the APA through the 1960s part of the larger ways in which society and culture and 1970s. In 1973, the APA removed homosexuality define what are its shared beliefs and behaviors and from the DSM. However, to permit payments for treat- the “proper” way an individual conducts himself or ment by insurance companies, the DSM-III included herself within a society and family. Many aspects the category “ego dystonic homosexuality” and listed of social behavior are usually considered including the criteria as (1) a persistent lack of heterosexual dress, posture, hairstyle, smell, gestures, facial expres- arousal, which the patient experienced as interfering sion, and use of language. Cultures also have specific with initiation or maintenance of wanted heterosexual codes for the context within which behaviors are relationships, and (2) persistent distress from a sus- appropriate so that different behaviors are condoned tained pattern of unwanted homosexual arousal. depending on gender, age, privacy, work, home, While this had impact on American opinion, it did family, friends, and strangers, for instance. Some not change the values and rules of much of the larger cultures while having very strict taboos on behavior society including the American military, which has also include special days of celebration (e.g., Mardi continued to discharge homosexuals from service. Gras, Halloween, New Year’s Eve) in which behav- These considerations strongly influence psychiatric ioral norms are deliberately flouted. Some very views of the criteria for mental illness and normality restrictive cultures may place an onerous burden of as will later be demonstrated. The World Health conformity on certain demographic groups such as Organization’s classification, the International Classi- women, so that any deviation from these “normal” fication of Diseases (ICD), in its diagnostic manual role expectations is seen as deviant and deserving of used in much of the world, continued to list homosex- punishment. uality as a diagnosis until 1992 with the publication of As psychiatry and the social and behavioral ICD-10. sciences consider normality, they are increasingly An example from the former Soviet Union demon- addressing the context of behavior. Delusions, for strates the misuse of psychiatry to serve a government’s example, are a criterion for many psychotic disorders. purposes in a more striking way through its implicit However, Western psychiatry has included in the def- authority to determine normal versus pathological inition of delusion that it be a “false and fixed belief” behavior. By the early 1960s, one of the most presti- and also that it is a belief not commonly held by gious psychiatric institutes in the Soviet Union added other members of the individual’s cultural group. This a criterion for schizophrenia very different from any added definition allows many unique cultural- previously proposed: “dissident behavior” and coined religious views of the world without labeling them as a new type of schizophrenia, which was called “slug- psychopathology. Individuals who feel they have been gish schizophrenia.” Using this criterion and diagnosis, “bewitched,” possessed by an evil spirit, or that God is a number of radicals were hospitalized in psychiatric punishing them for their sins are no longer diagnosed institutions and given treatments with severe side as psychotic if these thoughts are consistent with the effects under the auspices of curing them of their “ill- beliefs of their cultural or religious background. ness.” Many Western counties and human rights watch Likewise, hallucinations, defined by Western medi- groups made challenges to this diagnostic method cine as a sensory experience without sensory input and practice. However, this policy continued for more (e.g., hearing voices or seeing things), has usually than two decades when, with a more open emigration been seen as one sign of a psychotic experience. It is Normalization———1157 now recognized that “normal” individuals partaking Offer, D. and M. Sabshin. 1980. “Normality.” In Comprehensive in religious experiences with or without hallucinogens Textbook of Psychiatry, III, edited by H. Kaplan, A. M. can have hallucinations that are not part of a larger Freedman, and B. J. Sadock. Baltimore and London: William and Wilkins. psychiatric disorder. Pelchat, D., H. Lefebvre, and M. Perreault. 2003. “Differences Beyond questions of psychiatric disorders, there and Similarities between Mothers’ and Fathers’ Experiences are more common behaviors related to disabled indi- of Parenting a Child with a Disability.” Journal of Child viduals that are sometimes considered abnormal in a Health Care 7(4):231–247. manner that threatens their dignity. These behaviors Raymond, F. L. 2003. “Genetic Services for People with include drooling, incontinence, and being physically Intellectual Disability and Their Families.” Journal of Intellectual Disability Research 47(Pt. 7, October): 509–514. and cognitively dependent on others. These acts are Saraceno, B. 2002. “The WHO World Health Report 2001 on sometimes incorporated under the heading of “activ- Mental Health.” Epidemiology, Psychiatry and Society 11(2): ities of daily living” and if an individual cannot per- 83–87. form them, it is assumed he or she does not have a Steinhausen, H. C., J. Williams, C. W. Metzke, and H. L. Spohr. good quality of life or is not “normal.” Rehabilitation 2003. “Behavioural Phenotype in Fetal Alcohol Syndrome aims to improve or restore function on all levels and Fetal Alcohol Effects.” Developmental Medicine and Child Neurology 45(3):179–182. possible. While it is hard to reject maximizing each person’s potential, dwelling on a failure to reach a Websites certain level of performance or function perpetuates New Horizons Un-Limited Inc. guide, “Planning for the Future: the stigma attached to disabled people. Likewise, as Family First,” http://www.new-horizons.org/planff.html elderly persons lose the capacity for performing these activities they are often seen in Western society as pathological and a burden, a factor that can be asso- ᨘ NORMALIZATION ciated with increased interest in euthanasia. For dis- abled people, as well as other marginalized groups, Normalization, or the normalization principle, has the political revolution they are likely to lead is one been the most significant driving force in the ongoing in which difference is not labeled as deviance or closure of state-run or state-funded institutions for abnormal. people with a disability, especially those with a devel- opmental disability in the Western industrialized —Joseph A. Flaherty world. See also Eating Disorders; Health; IQ; Models; Obesity; Its influence is also permeating the policies of Psychiatry; Stigma. developing countries that are increasingly embracing human rights principles. For instance, the normaliza- Further Readings tion principle resonates closely with the UN Standard Goetzel, R. Z., K. Hawkins, R. J. Ozminkowski, and S. Wang. Rules for the Equalization of Opportunities for People 2003. “The Health and Productivity Cost Burden of the ‘Top with a Disability. 10’ Physical and Mental Health Conditions Affecting Possibly the first reference to the concept of nor- Six Large U.S. Employers in 1999.” Occupational and malization was by the Committee for the Partially Environmental Medicine 45(1, January):5–14. Harrington, G. M. 1997. “Psychological Testing, IQ, and Able-Bodied, established by the Swedish Government Evolutionary Fitness.” Genetica 99(2–3):113–123. in 1943. This committee was appointed to create better Hoenig, H., D. H. Taylor, Jr., and F. A. Sloan. 2003. “Does opportunities for the productive ability of partially able- Assistive Technology Substitute for Personal Assistance bodied persons, who, because of physical or mental Among the Disabled Elderly?” American Journal of Public occupational impairment or social affliction, can be Health 93(2, February):330–337. expected to have more difficulty than others in acquir- Houston, R. A. 2004. “Class, Gender and Madness in Eighteenth- Century Scotland.” Clio Medica (Netherlands) 73:45–68. ing and maintaining employment. This goal was con- Kaplan, A. A. 1967. “A Philosophic Discussion of Normality.” sistent with Sweden’s development of modern social Archives of General Psychiatry 17:325. services to replace the earlier philanthropic and public 1158———Normalization protective interventions that were seen as inadequate. influenced by his experiences during the German In particular, segregated services, such as institutions occupation of in World War II. He was for people with disabilities and social disadvantage, imprisoned for his activities in the resistance move- were being rejected. The committee’s report, published ment. Bank-Mikkelsen’s work soon had an inter- in 1946, stated that “this ‘normalization’ of conditions national impact. In 1962, U.S. President John F. of life, education, employment exchange etc. of the par- Kennedy established an advocacy committee on men- tially able-bodied must be a great achievement.” tal retardation, members of which visited Denmark These developments in Sweden in the 1940s con- and other Nordic countries. Bank-Mikkelsen con- centrated specifically on people with limited impair- tributed one of the chapters of the President’s ments but had little impact on those with more severe Committee’s final report released in 1969. He also developmental impairments. Many of this popula- strongly supported an international conference held in tion were placed in large institutions. However, in Copenhagen in 1964, which saw the formation of the the 1950s and 1960s the normalization principle, as International Association for the Scientific Study of presented by the Committee for the Partially Able- Mental Deficiency (IASSMD; now the International Bodied, was frequently cited as a principle that should Association for the Scientific Study of Intellectual also be applied to persons with intellectual and other Disabilities, IASSID). developmental disabilities. The immediate effect was He also played an important role in the Legal a restructuring of the institutions toward a more nor- Aspects of Mental Retardation symposium held in mal life for their residents, but this did not lead to Stockholm, Sweden, in 1967 and sponsored by the increased contact between persons with a disability International League of Societies for the Mentally and those in the local community. Handicapped (ILSMH; now Inclusion International). Historically, for the institutional population, the The results of this symposium strongly influenced scene shifted to Denmark where a strong advocate the 1971 UN Declaration on the Rights of Mentally for people with an intellectual disability, Niels Erik Retarded Persons. Bank-Mikkelsen, was instrumental through his sup- Through his travels to countries including port for parent advocacy groups in achieving an act of Australia, the United States, Japan, and Saudi Arabia, Parliament that used the term normalization. This act Bank-Mikkelsen promulgated the tenets of normaliza- supported the creation of situations for people with tion, with particular reference to the appalling condi- disabilities as near as normal as possible, irrespective tions he witnessed in institutions for people with an of whether it occurred entirely or partially within an intellectual disability. institution or in the general community. The second significant person to contribute to the While the act was strongly supported by large development of the principle of normalization was numbers of families who wanted their child with a the Swedish scholar Bergt Nirje. Nirje, whose back- disability living closer to home or at home, it attracted ground was in the law and humanities, was deeply hostility from vested interest groups, including pro- influenced by the work of Bank-Mikkelsen, whom he fessional staff, who feared a loss of their jobs. It was visited in 1963 as a preamble to speaking at a Nordic significant that the enactment of the act was helped by conference held in Oslo in that year. The theme of the ever-improving Danish economy. this conference was “institutions for mentally retarded When Bank-Mikkelsen spoke of normalization, he persons.” Nirje related that he was struck by the words was not inferring that people with disability were in the Danish law that stated “to let the mentally abnormal and nondisabled people were normal, nor retarded obtain an existence as close to the normal as did he want to imply that the special nature of people possible.” with disabilities should be made “normal.” To him, Positions with the Swedish Red Cross and the the goal of normalization was not to normalize these UN High Commissioner for Refugees that involved people but to normalize their living conditions. visiting Hungarian refugee camps in the aftermath of Undoubtedly, Bank-Mikkelsen’s passion for strong World War II profoundly influenced Nirje’s mission advocacy for disadvantaged people was significantly to oppose large “mass managed” institutions. He too Normalization———1159 contributed chapters to the report of the President’s yourself among others—to be able and to be allowed Committee on Mental Retardation. to be yourself among others.” As ombudsman and executive director of FUB, The next significant figure to contribute to the princi- the Swedish Association for Persons with Intellectual ple was Wolf Wolfensberger, who together with Robert Impairment (1961–1970), and coordinator of training Kugel, then chair of the President’s Committee on and program planning in the Ministries of Health and Mental Retardation, edited its final report published in Community and Social Services of the Government of 1969 (Kugel and Wolfensberger 1969). Wolfensberger Ontario, Canada (1971–1978), Nirje had the opportu- (1972), drawing on deviancy theory, proposed a refor- nity to develop his conceptualization of the principle mulation of the definition of the principle as follows: of normalization. In 1967, in a paper presented to the “Utilization of means which are culturally normative as First Congress of IASSMD held in Montpellier, possible, in order to establish and/or maintain personal France, he introduced the concept of the “normal behaviours and characteristics which are as culturally rhythms of life,” a concept that became embedded in normative as possible” (p. 28). He specifically indicated the eight core facets of life that became the essence of that this definition was for purposes of a North his conceptualization of normalization. To Nirje, nor- American audience, and for broader adaptability to the malization means a normal rhythm of the day; implies general area of human management. He suggested that a normal routine of life; means a normal rhythm of the normalization principle is culture specific and what the year; calls for normal developmental experiences may be typical in the Scandinavian environment would of the life cycle; calls for the valuing of individual not necessarily apply in other cultures. Wolfensberger’s choices; means living in a bisexual world; means elaboration was more detailed in its recommenda- applying normal economic standards; and calls for tions to service providers and facility managers than living, learning, and recreating in facilities similar to was Nirje’s approach. those others in the community enjoy. Wolfensberger became closely involved with the Nirje (1969) summed up these elements into his deinstitutionalization movement in North America, as overall definition of the normalization principle that did Nirje in Sweden and Canada. However, whereas “means making available to the mentally retarded Nirje concentrated on those structures that primarily patterns and conditions of everyday life which are as affected the day-to-day lives of the person with the close as possible to the norms and patterns of the disability, Wolfensberger developed a quality control mainstream of society” (p. 181). system that was directed specifically to program man- In 1985, Nirje refined his definition: “The agement. He devised two instruments for this purpose: Normalization Principle means making available to The Program Analysis of Service Systems (PASS) and all persons with disabilities and other handicaps, Program Analysis of Service Systems’ Implementa- patterns of life and conditions of everyday living which tion of Normalization Goals (PASSING). are as close as possible to or indeed the same as the In the 1980s, Wolfensberger (1983) further elabo- regular circumstances and ways of life of society” rated the principle of normalization, subsuming and (p. 67). He further elaborated this statement by point- replacing it with the theory of social role valorization ing out that (SRV). In his earlier formulation, deviancy theory was the driving force, but this was replaced by social role the normalization principle rests on the understand- theory. He defined SRV as “the enablement, establish- ing of how the normal rhythms, sequences and pat- ment, enhancement, maintenance, and/or defence of terns of life in any cultural circumstances relate to the social roles for people–particularly those at risk... by development, maturity of life of the handicapped, and on the understanding of how these patterns apply as using, as much as possible, culturally valued means” indicators for the development of proper human (p. 234). He suggested people’s roles can be enhanced services and actions. (p. 67) by improving both their competencies and their social image. Integration in society, Nirje maintained, is based on Normalization, in its various interpretations, is a the recognition of a person’s integrity, meaning “to be social science theory that has had a profound positive 1160———Norse Sagas effect on the lives of people who were once removed Icelandic families, and legendary Norse figures as and segregated from society. It remains relevant for well as stories translated from Latin saints’ lives and the twenty-first century as thousands of people remain continental romances. in institutions across the world. However, there are The Icelandic Family Sagas are set in tenth-century forces emerging that could see a return to institutional and are structured on a pattern of conflict solutions to social problems. (of honor or property) and revenge. The secondary literature on origins, structure, and plot themes such —Trevor R. Parmenter as feuding largely overlooks the great number of char- See also Niels Erik Bank-Mikkelsen; Bengt Nirje; Social Model: acters with impairments and disfigurements. Sweden. In the saga world, impairments were often acquired as Viking occupational hazards. That people with such Further Readings impairments as blindness or the loss of a limb or eye Ericsson, K. 2002. From Institutional Life to Community were regarded as disabled was a social construct that Participation. Uppsala, Sweden: Uppsala University. related not to the denial of civil rights but to one’s Hanamura, H 1998. Niels Erik Bank-Mikkelsen, Father of the ability to acquire and defend property and dependents Normalization Principle. Bogense, Denmark: Niels Erik against aggressive neighbors. The measure of an Bank-Mikkelsen Memorial Foundation. Kugel, R. and W. Wolfensberger, eds. 1969. Changing Patterns in Icelandic saga hero was in how he negotiated his impair- Residential Services for the Mentally Retarded. Washington, ment to obviate its disabling aspect. Impairments are DC: President’s Committee on Mental Retardation. thus the mark of outstanding characters—they were Nirje, B. 1969. “The Normalization Principle and Its Human never sentimentalized. Management Implications.” In Changing Patterns in The saga world regarded as impairments not only Residential Services for the Mentally Retarded , edited by the loss of a faculty or limb but also sexual and tem- R. Kugel and W. Wolfensberger. Washington, DC: President’s Committee on Mental Retardation. peramental quirks and foreign ethnicities. Of the three ———. 1985. “The Basis and Logic of the Normalization best-known and -loved eponymous saga heroes, Njál Principle.” Australia and New Zealand Journal of Develop- was never able to grow a beard, Egil was seven feet mental Disabilities 11:65-68. tall and swarthy, and Grettir was inarticulate and had ———. 1992. The Normalization Principle Papers. Uppsala, a very small penis. Among the several saga heroes Sweden: Centre for Handicap Research, Uppsala University. who are skaldic poets, Kormák looks Irish and is sex- ———. 2003. Normaliserings–principen. Lund, Sweden: Student litteratur. ually dysfunctional, Björn the Hítárdalur Champion Wolfensberger, W. 1972. The Principle of Normalization in appears to be homosexual, Gunnlaug Snake’s-Tongue Human Services. Toronto: National Institute on Mental suffers serial leg impairments, and Thormód Retardation. Kólbrún’s-Skald has a crippled right arm and stam- ———. 1983. Social Role Valorization: A Proposed New Term mers. Virtually all the Family Sagas include minor Mental Retardation for the Principle of Normalization. characters who are blind or have peg legs, and the 21:234–239. ———. 1992. A Brief Introduction to Social Role Valorization as simpleton is a stock character frequently made to play a High-Order Concept for Structuring Human Services, rev. the fall guy. Women are not usually said to have any ed. Syracuse, NY: Training Institute for Human Service impairment other than blindness, and deaf characters Planning, Leadership and Change Agentry. do not appear. The saints’ lives treat impairment as an opportu- nity for a miracle cure, while legends and romances ᨘ NORSE SAGAS exploit impairment for fantastical prostheses or magi- cal means to induce or cure dumbness. A subgroup of Norse sagas are prose narratives written in Old the Family Sagas, the so-called Contemporary Sagas Icelandic between 1190 and 1230 (the last years of the set in the thirteenth century, describe impairment even Icelandic Free State) mostly by unknown authors, more frequently, though this is usually the result of concerning the lives of Norwegian kings, prominent extra-juridical mutilation, and here we see impairments Norway: National Action Plans———1161 first associated with moral deficiencies, as came to be newly formulated international goals of full partici- standard in modern times. pation and equality for disabled people. This first plan included a set of objectives and activities, but —Lois Bragg these were formulated in quite general ways and with See also Folk Belief. unclear political commitment. While the government never admitted that this plan was unsuccessful in Further Readings terms of its actual accomplishments, the first four- Bragg, Lois. 1994. “Disfigurement, Disability, and Dis-integration year plan of action (1990–1993) was in part a result in Sturlunga Saga.” alvíssmál (Berlin) 4:15–32. of the fact that very few of the intended actions in the ———. 1997. “From the Mute God to the Lesser God.” Disability plan for the 1980s had actually been implemented. & Society 12(2): 165–177. It was noted that there was a need for a more spe- ———. 2000. “Impaired and Inspired: The Makings of an cific description of the intended actions, as well as a Icelandic Poet.” In The Archaeology and Anthropology of Madness, Disability, and Social Exclusion, edited by Jane clearer and more binding political commitment. It is Hubert. London: Routledge. these two elements of concreteness and commitment ———. 2004. Oedipus Borealis. Madison, NJ: Fairleigh that have shaped what became known as national Dickinson University Press. action plans. Sayers, William. 1997. “From Crown to Toe.” Arachne 4:123–159. In Norway, all services for all citizens are the responsibility of the public sectors, with primary ᨘ coordination at the local municipality level (kom- NORWAY: mune). Action plans for the disabled are not limited NATIONAL ACTION PLANS to activities in the area of health and social services, but include all spheres and sectors of public life. It is Action plan is a term used in many countries and in the national government that provides direction and many languages, typically referring to a package of guidelines, as well as having a monitoring role. Action objectives and activities that are intended to combine plans could be interpreted as a signal that the in ways toward accomplishing a larger goal. As in Norwegian government is taking the social and polit- many other countries, Norway has had a series of ical situation of disabled people more seriously, or at action plans in many areas of sociopolitical life. One least is taking the actualization of stated goals more arena where Norwegian national action plans have seriously. received much national and international attention is in the area of disability. The national action plans for disabled people refer to three sequential four-year USER INVOLVEMENT plans, covering a total period from 1990 to 2002, and Participation and influence of disabled people have with a general goal of improving the situation of consistently been a central principle in these action disabled people. The first two plans were written by plans. Concretely, this involvement has occurred in Norway’s national Ministries, whereas the third and two ways. First, the plans themselves are developed in most recent one was also acted on by the Parliament cooperation with disabled people and their organiza- and exists in the form of a white paper (Stortingsmelding tions, both through direct participation and also nr 8:1998–99). through a series of consultative hearings. The National Union of Disabled Peoples Organizations BACKGROUND AND CONTEXT (Funksjonshemmetes Fellesorganisasjon) and the National Council for the Disabled (Statens råd for As a follow-up to the UN International Year of funksjonshemmete), which includes members from Disabled Persons (1981) and the subsequent Decade disability organizations, have also been involved in of Disabled Persons (1983–1992), Norway produced the drafting of these plans. The second way that dis- a national plan with the aim of working toward the abled people are involved has to do with the actual 1162———Norway: National Action Plans actions stipulated in the plans, where user participation TIME LIMITED OR PERMANENT? is mandated in a number of ways. One example is that research and development activities require user- The activities stipulated in these action plans were collaboration as a prerequisite for receiving funding. intended to be time limited. However, many of the actions were deemed as successful and have been expanded or developed into permanent arrangements. PLAN CONTENT Examples include the right to have a user-controlled personal assistant and functional assistants to assist at The content of these plans for action has been two- one’s place of employment. In this way, action plans fold. The first part is more principled in nature and can be said to be vehicles for initiating and trying out describes overriding sociopolitical goals and general different arrangements, as experimental steps as part guidelines. The second part is the actual plan of of a longer-term strategy and goal. actions to be carried out, containing the concrete activities and arrangements that the government is expected to implement, usually including specified EVALUATION sources and mechanisms for funding. The list of actions has been quite diverse in regard to purpose, While several of the larger projects resulting from form, and scope, and the number has increased with these action plans have been externally evaluated, the each plan. The 1990–1993 plan had a list of 53 process of action plans itself has not been assessed. actions, the 1994–1997 plan had 90, and the third had However, after the first two plans, the government nearly 150 actions to be taken. While the range of Ministries reviewed results and experiences and types of listed actions to be implemented is rather emphasized in their conclusions that action plans diverse, they can be summarized in the following made it easier to start up new initiatives. In addition, major categories: specified (earmarked) funding, many actions and arrangements might not have taken incentive funding, innovative efforts, research and place at all were it not for the framework of guiding development work, and information projects. principles and priorities described in the plans. The Examples of activities receiving economic incen- dual focus on concreteness and binding commitment tives include extending the range and type of respite was also seen as important. services available to families with a disabled family However, there are some likely limitations to the member and smaller actions such as economic “action plan approach” as a way of improving the support for the production of “talking books.” situation of disabled people. First, disability politics Examples of innovative actions are the establish- risks becoming something outside of, or at least ment of a competence center to assist those with alongside, mainstream public sector policy. Having a rare diagnoses and their families and smaller pro- special plan for a certain group of citizens reinforces jects such as sign language theater. In the area of their separateness and differentness. Another limita- research and development, action plans have tion might be that the overall effort behind these plans financed a range of projects, including a national has been so all-encompassing and yet so detailed research program on disability, one on the living that the smaller bits may be easier to implement situations of intellectually disabled people, and a than addressing the larger, overarching challenges. number of smaller projects. Examples of informa- Furthermore, there have been problems at local levels tion activities include projects aimed at improving in joining the various actions together into a coordi- access to information, such as sign language and nated, comprehensive strategy. There is then a risk of subtitles on television. Other types of information increasing the gap between the societal goals of full projects are efforts aimed at informing public servants participation and equality and the vast range of spe- and the general citizenry about disability issues, cific actions to be implemented. While it is difficult especially those involved in local administration and today to judge the overall effect of these national community planning. action plans, the hope that the various actions and Novel, The———1163 activities would somehow combine toward a larger Since the late 1990s, the expression has become common effort remains to be realized. very popular and has been used by a variety of dis- ability groups in trainings, articles, slogans, and titles. —Kristjana Kristiansen and Jan Tøssebro —James Charlton See also Participation; Social Model: Sweden. See also Advocacy, International; Disabled Peoples’ International; International Disability Organizations; Ed Roberts. ᨘ “NOTHING ABOUT US Further Readings WITHOUT US” Charlton, James. 1998. Nothing about Us without Us: Disability Oppression and Empowerment. The expression “Nothing about us without us” Berkeley: University of California Press. has become one of the rallying cries of the interna- Driedger, Diane. 1989. The Last Civil Rights Movement: Disabled tional disability rights movement (DRM) and disabled Peoples’ International. New York: St. Martin’s. people’s organizations (DPOs). First coined in the early 1990s, the slogan’s power derives from its location of the source of many types of (disability) ᨘ NOVEL, THE oppression and its simultaneous opposition to such oppression in the context of control and voice. “Nothing “His wound gives him his narrative power.” Arthur about us without us” was adopted as a leading slogan Frank is speaking of Tiresias, the ancient seer, who by Disabled Peoples’ International because it resonates was blinded by the gods that he might “see” the future with the philosophy of the disability rights movement. more clearly. Procne weaves the story of her sister As Ed Roberts, one of the leading figures of the Philomela’s rape by King Tereus into fabric, her international DRM, has said, “If we have learned one tongue having been cut out to prevent her telling the thing from the civil rights movement in the U.S., it’s tale. Homer may have been blind, the better to remem- that when others speak for you, you lose” (quoted in ber the tale of the tribe and translate it into heroic Driedger 1989:28). dactyls. Such examples from classical literature sug- “Nothing about us without us” can be considered a gest that the art of storytelling is intimately linked demand for self-determination. Self-determination to a narrator’s disability. Frank speculates that, at some is the essential theme that runs through all the work fundamental level, the figure of the “wounded story- of the international DRM, regardless of political- teller” may represent a “common bond of suffering economic or cultural differences. Control has universal that joins bodies in their shared vulnerability.” But the appeal for DRM activists because the needs of people wound may also extend to the story itself, a tale that is with disabilities and the potential for meeting these often of self-inflicted blindness (Oedipus), hubris- needs are everywhere conditioned by a dependency generated madness (Lear), and socially redemptive born of marginalization saturated with paternalism. suffering (Quasimodo, Tiny Tim). Although disabled The condition of dependency is presently typical for figures seldom appear as main characters, they often hundreds of millions of people throughout the world. appear in cameo roles as grotesques or exotics necessary Only in the past 25 years has this condition begun to to the novel’s plot. Given the preponderance of disabled change. Although little noticed and affecting only a figures in fiction, what is the relationship between the small percentage of people with disabilities, this body of the story and the story of the body? transformation is profound. For the first time in the This question has been crucial for disability studies thousands of years of recorded human history, politi- in the humanities. Disabled figures appear in many cally active people with disabilities are beginning to novels, such as Melville’s one-legged Ahab, the invalid proclaim that they know what is best for themselves narrator of Charlotte Perkins Gilman’s “The Yellow and their community. This is a revelational claim aptly Wallpaper” and the limping Baby Suggs in Toni capsulized in “Nothing about us without us.” Morrison’s Beloved, and most novels touch, in some 1164———Novel, The way, on themes of illness, disfigurement, and mental more forcefully in the public sphere, they found illness. Certain genres—mysteries, Gothic novels, themselves portrayed as threats to patriarchal institu- science fiction—are built around nontraditional bodies tions, commonly represented in terms of irrationality and extreme psychological states. We may not think and hysteria (the madwoman in the attic) or physical of Milly Theale’s lingering illness in James’s Wings of frailty (the invalid woman). Novelists such as the Dove or of Bertha Mason’s madness in Jane Eyre as Nathaniel Hawthorne, Émile Zola, and Gustav disabilities, but once we do, we begin to see the extent Flaubert often represented women as limited by their to which novels rely on a figure of bodily infirmity or biology or subject to “female maladies” such as hys- cognitive incapacity. This linkage has spawned a con- teria and neurasthenia. To some extent, this focus on siderable interest in the novel within disability studies. female biology and psychology was prompted by Foundational works such as Lennard Davis’s Enforcing scientists who were diagnosing women’s illnesses and Normalcy (1995), Rosemarie Garland Thomson’s prescribing cures, the most famous of which was S. Extraordinary Bodies (1997), Diane Price Herndl’s Weir Mitchell’s “rest cure.” As Diane Price Herndl Invalid Women (1993), and David Mitchell and Sharon (1993) points out, many nineteenth-century novels are Snyder’s Narrative Prosthesis (2000) address not only centered around an invalid or dying woman whose the prominence of the disabled figure in fiction but also representation reinforces female passivity and pathol- the cultural meaning of disability in a genre founded on ogy at a moment when many women were gaining an ideal of verisimilitude and fidelity. political and social power. But this passivity performs Many critics see the novel emerging in the eigh- a critical function, as Herndl points out, because the teenth century as an extension of Enlightenment ratio- invalid woman can serve as a challenge to representa- nality, a vehicle for chronicling the emergence of a tion itself. Invalidism, whether in the historical Alice new middle class. The novel’s ability to represent James or the fictional portrait of Milly Theale, may ordinary people in ordinary circumstances made it a offer women “a coherent and simple role in a world significant genre for validating a certain type of where multiple and conflicting roles are threatening or average individual, l’homme moyen sensuel, as the disappointing” (Herndl 1993). The unnamed narrator Realists called it. But as Lennard Davis has observed, of Gilman’s “The Yellow Wallpaper” uses her status as l’homme moyen was also a product of medical and invalid to question the scientific definition of female positivistic sciences that emerged in the early nine- biology offered by her doctor husband. teenth century and that reinforced certain ideas of In the modernist novel, disability often serves as a bodily or cognitive normalcy and excluded others. sign of lack or absence, a figure for alienation in a world The sciences of eugenics, comparative anatomy, psy- dominated by instrumental reason and commodity capi- choanalysis, and phrenology provided a host of new talism. In Ernest Hemingway’s The Sun Also Rises, Jake (often suspect) diagnostic methods for analyzing var- Barnes suffers from a mysterious “wound” that has ren- ious types of bodies and mental states for which the dered him impotent. Edith Wharton’s protagonist in new technologies of photography and film provided Ethan Frome is a man who becomes seriously disabled visual support. This nineteenth-century “hegemony of in a suicide attempt in response to his arid, sexless life normalcy,” as Davis calls it, required a nontraditional with a disabled wife. In Lady Chatterley’s Lover, Clifford or disabled body that could serve as a negative version Chatterley is in a wheelchair, the result of a war wound of the statistical average. Often the disabled figure that has rendered him, like Jake Barnes, impotent. In annexed other forms of deviance—racial, sexual, William Faulkner’s The Sound and the Fury, Benjy political—that threatened projects of imperialism and Compson is mentally retarded, his broken, discontinuous national consolidation. Thus, the disabled figure in narrative rendering the loss of family property but also fiction was a site for social anxieties within modernity the fragmentation and commercializtion of the American for which there was as yet no name. South. These modern texts thematize male inadequacy A key optic for regarding disability in nineteenth- through disability that is a synecdoche for larger issues century fiction is through gender. As women participated of world war, urbanization, and gender uncertainty. Nursing———1165

Contemporary novelists have used disability to novel that focus on its response to material conditions of question the integrity of the unitary subject whose emerging capitalism fail to recognize the impact of these invention had been the focus of much previous fiction. conditions on the materiality of the body. Davis sees the Recognizing that the “normal” body is a variable fic- modern novel as constructed around a dichotomy of tion, novelists have represented the disabled body as a normal-abnormal identities, one reinforced by positivist site of stigma but also of social critique. From William science in service to a national imaginary of typicality. Burroughs’s science fiction cyborgs—part technology For Davis, the disabled figure is foundational for under- and part human—or Katherine Dunn’s carnival freaks mining this imaginary. Since anyone can become dis- in Geek Love to Toni Morrison’s one-armed Nan in abled, the ideal of an average, typical, national body is Beloved, disabled characters challenge certain human- suspect. The disabled figure “dismodernizes” the ist definitions of identity. Burroughs’s cyborgs reveal modern novel, establishing its formations in modernity the proximity of bodies to technology in the postwar but recognizing its deconstructive function in relation to era; Dunn’s chemically altered grotesques expose the modern subject produced therein. the fictive nature of family and social institutions; —Michael Davidson Morrison’s disabled African American women call attention to bodies that have historically been marked See also Cyborg; Feminism; Invalid Women; Modernity; as other, culturally ostracized within racist culture. Representations of Disability, History of; Representations of Rosemarie Garland Thomson (1997) notes that such Disability, Social. representations in Morrison “enable [her]...to Further Readings represent a particularized self who both embodies and transcends cultural subjugation, claiming physical dif- Davis, Lennard J. 1995. Enforcing Normalcy: Disability, ference as exceptional rather than inferior.” Deafness, and the Body. London: Verso. Bending over Backwards: Disability, The pervasiveness of disability in the novel has ———. 2002. Dismodernism and Other Difficult Positions. New York: produced several influential theoretical studies of nar- New York University Press. rative. David Mitchell and Sharon Snyder (2000) have Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and suggested that not only do many novels feature a dis- Ethics. Chicago: University of Chicago Press. abled character, such a figure provides a kind of “nar- Herndl, Diane Price. 1993. Invalid Women: Figuring Feminine rative prosthesis” for novelistic coherence itself. On Illness in American Fiction and Culture, 1840–1940. Chapel the analogy of the prosthetic limb that provides an Hill: University of North Carolina Press. Mitchell, David T. and Sharon L. Snyder. 2000. Narrative illusion of physical wholeness for the amputee, the Prosthesis: Disability and the Dependencies of Discourse. disabled figure provides an illusion of textual embod- Ann Arbor: University of Michigan Press. iment that the novel must produce. And just as the Thomson, Rosemarie Garland. 1997. Extraordinary Bodies: wounded hero must be “cured” or brought back to Figuring Physical Disability in American Culture and health, so the disabled figure must be eliminated for Literature. New York: Columbia University Press. the social body to be restored. The one-legged Ahab, whose megalomaniacal pursuit of the white whale for taking his leg, must be eliminated so that Ishmael’s ᨘ NURSING more recognizable humanist narrative can triumph. Physical and cognitive differences are the text’s Competent nursing has been central to the care of “cultural other” that must be brought under control by people with disabilities for many centuries. Up until the the narrative act. In Mitchell and Snyder’s theory, the nineteenth century, people who were sick or disabled interrogation of the body’s materiality coincides with because of old age, mental illness, or physical disabil- an interrogation of the novel’s materiality, its ability to ity were usually cared for by their families at home. For complete a story that has a wound at its center. the poor sick and destitute, institutional care existed Lennard Davis (1995) has argued that this wound is in local charitable guest- or poor houses. Professional a historical phenomenon. He notes that theories of the nursing care by skilled nurses who were paid for their 1166———Nursing work, either in these institutions or through visiting some also provided care for people in their own nursing associations, grew during the nineteenth homes. century. At that time, patterns of living and the provi- Modeled after Roman Catholic sisterhoods and sion of health care changed as a result of broader social brotherhoods, the Protestants revived the function of changes, such as industrialization, urbanization, and the deacons and deaconesses. In 1836, Pastor Theodor changing work and gender relationships. Fliedner established one of the most well-known associations for care of the sick and dependent, the Deaconess Institute in Kaiserswerth, Germany. Within NURSING ORDERS the protected structure of a motherhouse, the institute Nurses’ role in care for the sick and disabled originated trained both nurses and teachers to work in its facili- in religious orders, founded at the time of the ties. The work of deaconess nurses was not limited Reformation and Counter-Reformation. Women and to care of physically sick or disabled people. People men who joined religious orders actively devoted them- with mental illness were also included in the charita- selves to poor relief and care for the sick. They viewed ble effort. Within decades of its founding, the the care they provided as part of their religious practice Kaiserwerth Institute included hospital care, a school and learned nursing skills through apprenticeship. With for infants, an orphanage, and an asylum for women the foundation of the Daughters of Charity in France in with mental ailments. 1633, cofounders Vincent de Paul and Louise de Marillac set a remarkable example of organized nursing NURSING AS A PAID care by lay women. The Daughters of Charity gained PROFESSIONAL OCCUPATION enormous social respect. Religious calling and spiritual commitment to God legitimized their role. So strong The Kaiserswerth Institute served as an important was the example that Roman Catholics and Protestants inspiration to Florence Nightingale, who spent some alike adapted to this model, and charitable nursing time there in the mid-nineteenth century. She had an orders spread over Europe and North America through influential role in spreading and transforming the the next centuries, reaching a peak in the Evangelical disciplined religious hospital apprentice training for and Missionary religious revival movements in the late nurses into a nonsectarian model that was fundamen- nineteenth and early twentieth centuries. tal to the emergence of nursing as a paid professional Within a broader nineteenth-century humanitarian occupation. Most well-known for her work in the reform movement, previously unspecified groups of Crimean War, Nightingale fundamentally influenced socially marginalized poor and disabled people were the direction of nursing and nursing education in differentiated into distinct categories. Separate institu- modern hospitals. Her authority evolved against the tions emerged, for example, for the care of the sick backdrop of a profound change in the public role of and incurables, for insane persons, and for prisoners. middle-class women. In the new capitalist and industrial world, the emerg- The nineteenth-century humanitarian impulse that ing middle classes became concerned about the grow- generated a new concern about the well-being of the ing numbers of poor, which they perceived to be a poor provided a context for new caring roles for source of social instability, fueled by fears of dirt, women. Their work and education became a matter poverty, and contagious disease. In the New World, of public debate, and an expanding economy created massive immigration created its own problems. new work opportunities for middle-class women. Reform-minded middle-class citizens sought new and They actively joined the humanitarian effort to uplift supposedly more effective ways to help the poor through the poor and to help create a respectable working rational control and scientific efficiency. Establishing class. In this way, women not only created resources good nursing care was one of them. Numerous associ- for a more meaningful life, but their philanthropic ations for care of the sick emerged, who involved activities helped them to articulate the value of themselves with care of the sick in institutions, but women’s work in asserting a moral and ethical social Nursing———1167 influence, in fighting for temperance, for example, and associations for care of the sick, became an or in reforming hospitals and asylums. Based on a inspiration to reform-minded doctors. The slight middle-class domestic ideology of women’s special difference was that they were particularly interested inclination for caring work, the new opportunities for in training these women themselves and bringing the women were considered an extension of women’s nursing staff under their own control. traditional role in their families. Teaching, nursing, and Initially, their interest matched feminist attempts to social work became new areas of paid professional create work opportunities for women. The combined work for women. The women’s movement, which efforts of doctors, hospital administrators, and obtained a more organized form in the late nineteenth respectable ladies to reform hospitals resulted in the century, provided a context for transforming a hitherto introduction of hospital-based training schools of religious legitimization for women’s work into a sec- nursing, a highly attractive model of nursing educa- ular one. The idea that women had a special moral tion that spread throughout the world, attracting capacity and compassion, and the right characteristics large numbers of young, middle- and working-class such as devotion, sensibility, and sacrifice for caring women. The arrangement was that the women lived work in a paid capacity, complementary to public and worked on the hospital grounds, their reputations roles of men, was a deeply gendered notion, reflecting carefully protected through a disciplined system of the gendered beliefs of the time. supervision and regulations, in return for a nursing The projected image of the middle-class woman, diploma after initially two, but later three, years of trained in care of the sick, who brought order, cleanli- training. Doctors taught them the medical knowledge ness, and discipline to the unordered environment of deemed appropriate and necessary, and usually a large urban hospitals was a powerful one, and espe- nurse superintendent oversaw the management of the cially attractive to reform-minded physicians, who school under the authority of the medical director of had their own interest in hospital reform. Influenced the institution. Soon, however, nurses expressed by the ideals of science, they sought to expand the awareness of the challenges associated with a hospital- application of medical therapeutics and technology. based program of education. Work conditions of the They had an interest in enhancing their research and new student nurses did not differ much from their teaching on hospital wards and valued the assistance counterparts in domestic servant roles in terms of of trained nurses who could help them to implement pay and working hours. The work nurses took up in new therapies and maintain order on the wards. private duty upon graduation was largely unprotected. This situation prompted nurses to organize themselves into professional associations and seek legal and NURSING EDUCATION AND WORK social protection from the state through registration The expanding demand for women with training in laws and licensing regulations. care of the sick grew from various sources, a boosting economy, the rise of a middle class that could afford NURSES AND CARE to pay for private nursing, and the expansion of hospi- OF THE MENTALLY ILL tal care for a growing urban community and industri- alized workforce that could no longer be cared for in The introduction of diploma-based nursing education their own homes. forcefully continued the cultural connection between Physicians sought to improve the image and reality nursing work and care of the sick and disabled. The of public hospitals and asylums alike, which tradi- introduction of trained nursing in asylums forms a tionally had a poor reputation as stigmatizing places salient example. Institutional care for the mentally ill of last resort. In making hospitals attractive to a grow- became firmly established in the industrializing world ing middle (and reputable) working class, the civiliz- in the nineteenth century. However, despite initial ing role of respectable nurses, for which high social optimism about the improvement new institutions regard had already been established in nursing orders would bring, asylums soon grew into overcrowded, 1168———Nursing lower-class institutions for indigent insane and their opportunity for a decent social position for large social reputation was very poor. groups of middle- and working-class women and men. When scientific psychiatry grew as a medical The popularity of this training model for nurses may field in the late nineteenth century, psychiatrists had indicate that it served first and foremost as a new way a vested interest in enhancing the status of asylums to staff institutional care for the sick and disabled. and introducing new therapies such as bed rest and This model of combined nursing education and work hydrotherapy. They began to model the asylums after gradually changed in the second half of the twentieth the influential example of the general hospital. A cru- century, as nursing education and work increasingly cial factor in this transformation was the availability began to be separated and the necessity of a more of competent personnel who could assist them in mak- advanced education for nurses became essential for ing the new therapies work. Inspired by the impact of expanding health services in the second half of the the role of middle-class women in hospital reform and twentieth century. the effect of hospital nurse training schools, asylum physicians also began to argue for the establishment PUBLIC AND MENTAL of mental nurse training. Nurses, trained in care of the HEALTH MOVEMENTS sick, began to provide day-to-day care of the mentally ill, and asylums opened their own mental nurse train- The devastating impact of World War I, with its after- ing programs. math of labor unrest and economic depression, com- The care of large groups of mentally ill patients bined with widespread tuberculosis and high infant with difficult and often unpredictable behavior mortality rates, reinforced the idea that in a democra- remained a burdensome task, however, and the limita- tic society basic needs of citizens had to be taken care tions of high turnover of personnel and demanding of independent of the ability of individuals to pay for work conditions characteristic of the general hospital health services. Starting in the nineteenth century and nursing workforce were probably even more promi- expanding in the first half of the twentieth century, nent in the asylums. At the turn of the twentieth cen- Western industrialized nations began to provide more tury, a large part of the asylum population consisted consistent protection of its citizens through state of demented elderly, for example, who came to the regulated security and insurance plans for unemploy- asylum in the last years or last months of their life. ment, old age, sickness, and disability. Although Behavior of demented, confused, or agitated patients models and programs varied between countries, some was difficult for nurses to handle, and communication form of regulated health insurance financed through with this population was a complex matter. Patients in private or public funds became the norm and had a a delusional, manic, or agitated state could be danger- permanent impact on the provision and development ously violent or unpredictable in their behavior. of health services and disease prevention. Asylum work was strenuous and not without risk. Closely related to this idea was the belief that More stable patients, however, usually took part in science, generating more effective and efficient ways hospital work and made an extensive contribution to to manage the social problems created by dependency, the asylum economy. A gradual decrease in mortality provided the foundation on which social policies and rates, as in Dutch asylums, likely indicated that to solutions should be based. The public and mental some extent mentally ill patients did benefit from health movements arising in the first part of the twen- more competent and compassionate care, although tieth century were a case in point. They reflected the generally circumstances in asylums remained chal- growing confidence that professional and scientifi- lenging, reflecting the broader social difficulty of cally based efforts to enhance the health of the people, caring for the mentally ill. physically and mentally, would ultimately result in a Although the disadvantages of large institutions productive and healthy population. Nurses took up did not disappear with the introduction of systematic an essential role in these movements, expanding and training of personnel, nursing work provided an re-creating more independent careers in public and Nursing———1169 mental hygiene work, such as children’s bureaus Through national and international nursing organiza- and vaccination programs, school health programs, tions, such as the International Council of Nurses visiting nursing societies, tuberculosis prevention, (ICN), nurse leaders sought to establish minimal edu- child guidance clinics, but also in factories, insurance cational guidelines for professional nurses and expand companies, and boards of health and education. nurses’ role in health service, policy, and research, while seeking to maintain control over a continuously CHANGES FOLLOWING WORLD WAR II expanding nursing workforce. The higher complexity of nursing care required for a patient population that Following World War II, a growing health agenda experienced new illnesses for which in the past no originated from various sources. Increased interna- medical treatment had existed was not always well tional economic and social collaboration in health understood among health policy makers. Moreover, matters was reflected in the foundation of the World as health care advanced, chronic illness and permanent Health Organization (WHO) in 1948. The WHO disability rendered new demands for skilled long-term noted that “health is a state of complete physical, care. The gendered context in which professional mental and social well-being and not merely the nursing emerged during the nineteenth century had absence of disease or infirmity” (Howard-Jones generated beliefs that made it persistently difficult to 1981:472). The new availability of antibiotic drugs articulate at a social level the essential value of nurs- fueled increased confidence in the advancement of ing care in all of these situations. medical knowledge and technology. Increasing Defining the responsibilities of the nurse, which had national wealth provided an economic basis for been a long-standing matter of debate within nursing expanding health programs. In the mid-twentieth organizations, regained relevance as the function of the century, hospital and medical care insurance legisla- nurse had to be articulated in new twentieth-century tion facilitated an enormous growth of hospitals and contexts. Virginia Henderson (1969:50), an influential medical care services and generated an unprecedented nursing leader in the United States and a clinical nurse demand for health care personnel. researcher, developed a powerful and influential state- During the 1940s and 1950s, every industrialized ment that captured the essential role of the nurse in the country faced an enormous shortage of nurses. As a assistance of dependent and disabled individuals: more acutely ill patient population filled hospital wards, traditional patterns of staffing hospitals by The unique function of the nurse is to assist the indi- continuously turning over nursing student personnel vidual, sick or well, in the performance of those no longer matched required levels of care and clinical activities contributing to health or its recovery (or to a peaceful death) that he would perform unaided if he observation. More graduate nurses became employed had the necessary strength, will or knowledge. in the hospital, while continued demand for more caretaking personnel was also filled through new Her view, articulated in Basic Principles of Nursing diversification of the nursing workforce. As of the Care, became the basis for the ICN’s vision on nurs- 1960s, academically based nursing education became ing and was translated into 12 languages, serving as a more widespread, while new programs for nurse assis- guide for nurses around the world. tants and licensed practical nurses were also estab- lished to complement the work of the traditionally PRIMARY HEALTH CARE registered nurses. Nursing homes emerged for the care of chronically ill and disabled people, and the lower- Not only the view on health and health services qualified group of nurses became the workforce of changed profoundly during the twentieth century but choice in these new institutions. also the perspective on sick and disabled people While nursing adapted to increased demand, com- themselves. Health is increasingly considered a basic ing to terms with the new diversity in educational human right. Moreover, health consumers now preparation of nurses was a complicated process. actively participate in health care politics, raising 1170———Nursing awareness and advocating for equal access and and value of nursing care remains a prominent health improvement of service. A strong consumer move- care issue. ment now advocates for consumer rights, resources, —Geertje Boschma and responsibilities. Demographic changes and a rapidly growing See also Health Care and Disability; Medicine. elderly and chronically ill population have shifted the emphasis of health services from merely disease Further Readings prevention to health promotion. The argument that hospital-based care and medical services alone are not Boschma, Geertje. 1996. “Agnes Karll and the Creation of an Independent German Nursing Association, 1900–1927.” enough to maintain people’s health gained momentum Nursing History Review 4:151–168. as of the 1970s. An emphasis on primary health care ———. 2003. The Rise of Mental Health Nursing: A History of has emerged, in which community-based care and Psychiatric Care in Dutch Asylums, 1890–1920. Amsterdam: promotion of a healthy lifestyle have obtained central Amsterdam University Press. stage, enhancing an active role of people in maintain- Boyle, Isobel I. 2003. “The Consumer Movement.” Pp. 374–390 Realities of Canadian Nursing: Professional, Practice and ing their own health. Primary health care is a broad- in Power Issues, edited by M. McIntyre and E. Thomlinson. based approach to health services in which promotion, Philadelphia: Lippincott Williams & Wilkins. prevention, cure, rehabilitation, and palliative support Brush, Barbara L., Joan E. Lynaugh, Geertje Boschma, are equally valued. Nurses, both in staff positions and AnneMarie Rafferty, Meryn Stuart, and Nancy Tomes. 1999. in specialized advanced practice roles such as clinical Nurses of All Nations: A History of the International Council nurse specialist or nurse practitioner, have an essential of Nurses, 1899–1999. Philadelphia: Lippincott. role in patient advocacy and in bringing about the Buhler-Wilkerson, K. 1983. “False Dawn: The Rise and Decline of Public Health Nursing in America, 1900–1930.” primary care philosophy. Pp. 89–106 in Nursing History: New Perspectives, New Possibilities, edited by E. Condliffe Lagemann. New York: Teachers College Press. CURRENT AND Clarke, Heather F. 2003. “Health and Nursing Policy: A Matter of PERSISTENT CHALLENGES Politics, Power and Professionalism.” Pp. 60–82 in Realities of Canadian Nursing: Professional, Practice and Power Currently, nurses consider enhancing the integra- Issues, edited by M. McIntyre and E. Thomlinson. tion of people with disabilities in the community and Philadelphia: Lippincott Williams & Wilkins. improving their quality of life essential tasks. As Henderson, Virginia. 1969. Basic Principles of Nursing Care. part of their academic education, nurses have gained Basel, Switzerland: S. Karger. knowledge and expertise in research and policy devel- Howard-Jones, N. 1981. “The World Health Organization in Historical Perspective.” Perspectives in Biology and Medicine opment. Nursing research is now a fundamental com- 24(3): 467–482. ponent of nursing practice. Over the past decades, International Council of Nurses. 2000. “ICN Position Statements: nurses have made substantial contributions to knowl- Prevention of Disability and the Care of People with edge of chronic illness and disability, supporting Disability.” Retrieved December 16, 2003 (http://www.icn. people with disabilities in improving their health and ch/psdisability00.htm). The Charitable Imperative: Hospitals and living conditions. Both nurses, as providers, and Jones, Colin. 1989. Nursing in Ancien Regime France and Revolutionary France. persons with chronic illnesses and disabilities, as London: Routledge. consumers, experience the unrelenting reluctance of Lynaugh, Joan. E. and Barbara L. Brush. 1996. American society at large to value the public need of basic care. Nursing: From Hospitals to Health Systems. Malden, MA: As a nursing shortage once again is looming around Blackwell. the world, largely as a result of the profound effects of MacLennan, D. 1987. “Beyond the Asylum: Professionalization cost-containment and restructuring of health care dur- and the Mental Hygiene Movement in Canada, 1914–1928.” Canadian Bulletin of Medical History 4:7–23. ing the 1990s, which eliminated thousands of nursing Nelson, Sioban. 1999. “Entering the Professional Domain: The jobs, the persistent difficulty as much as the profound Making of the Modern Nurse in 17th Century France.” necessity of finding a balance in evaluating the cost Nursing History Review 7:171–187. Nursing———1171

Poplin, Irene. S. 1988. “A Study of the Kaiserswerth Deaconess Van Drenth, Annemieke and Francisca de Haan. 1999. The Rise of Institutes’ Nurse Training School in 1890–1851: Purposes Caring Power: Elizabeth Fry and Josephine Butler in Britain and Curriculum.” Ph.D. dissertation, University of Texas at and the Netherlands. Amsterdam: Amsterdam University Press. Austin. Weinberg, Dana B. 2003. Code Green: Money-Driven Hospitals Thorne, Sally E. 1993. Negotiating Health Care: The Social and the Dismantling of Nursing. Ithaca, NY: Cornell Context of Chronic Illness. Newbury Park, CA: Sage. University Press. O

ᨘ OBESITY stroke, gall bladder disease, and cancer of the prostate, colon, and breast. Sedentary lifestyles and increased Obesity is a condition characterized by a larger-than- consumption of inexpensive, fatty, processed foods average amount of body fat (excess adipose tissue). are typically hailed as contributing factors, though While fatness has been associated with wealth and heredity and genetic factors are thought to play some prosperity in historical contexts where continued exis- part as well. However, much medical research con- tence was predicated on access to food, obesity is a flates obesity with these factors, further suggesting a medical term used to pathologize the fat body in a causal relationship between obesity and the aforemen- context of abundance of resources. In contrast to over- tioned health problems. Critics point out that the cor- weight, which is a Body Mass Index of 25–29 (BMI, relation is far too often misinterpreted as causation, or weight in kilograms divided by the square of and they propose instead that the stresses resulting height), obesity is a BMI of 30 or greater. (BMI prob- from living in a society that stigmatizes fatness as lematically does not consider muscle mass and is only unhealthy, immoral, and disgusting may in fact be the a crude measure of weight.) Obesity is considered a cause of ill health. public health crisis/epidemic in the affluent West in Since the early 1970s, members of several U.S. the early twenty-first century, with more than one- size-acceptance organizations, most prominently the third of all adults and one in five children categorized National Association to Advance Fat Acceptance as obese. There was a huge jump in National Institutes (NAAFA) and the Fat Underground, have been work- of Health estimates of the prevalence of obesity in ing to change the way society perceives of fatness, the United States from the 1960–1980 period, when to cast off its stigma, and to combat discrimination. 15 percent of adults were obese, to over 30 percent in Their actions have been instrumental in the inclusion the 1980–2000 period. However, the federal govern- of obesity in the Rehabilitation Act of 1973 and ment’s lowering of the baseline of standards for the Americans with Disabilities Act of 1990. Fat obesity made 35 million people who had not been Americans are legally protected against discrimina- considered fat before suddenly very much so. tion so long as their condition substantially limits at The management of obesity fuels a multi-billion- least one of their major life activities or is perceived as dollar diet and fitness industry, extensive pharmaceu- doing so. Nonetheless, controversy abounds about tical research and development, lobbying for taxes whether the condition of obesity, over which individ- and advertising bans on certain foods, efforts to uals are usually thought to have some personal con- improve nutritional labeling, and other interventions trol, should be protected, and very few anti-obesity aimed at slimming down the public. The medical discrimination cases have been successfully argued. establishment links obesity to a host of health problems, Several places in the United States have taken the including high blood pressure, diabetes, heart disease, plight of fat people who suffer discrimination more 1173 1174———Obsessive-Compulsive Disorder seriously, with Michigan, Washington, D.C., and repetitive behaviors, but they tend not to cause distress Santa Cruz and San Francisco, California, offering or disability. Many people double-check locks or anti-size discrimination statutes for protection. avoid stepping on cracks. These rituals are viewed —Kathleen LeBesco as acceptable and desirable and are easily adapted to changing circumstances. To the obsessive-compulsive See also Americans with Disabilities Act of 1990 (United States); person, however, rituals are a distressing and unavoid- Health Promotion; Normality. able way of life. Data indicate that as many as 2–3 percent of the general population meet criteria for Further Readings OCD at some point during their lives. Men and LaRochelle, Mark. 2002. “How Fat Are We? Obesity Epidemic women are equally likely to develop OCD, although Consumers’ Research Magazine Needs a Grain of Salt.” men have an earlier onset. 85(12): 10–14. “Losing Weight—An Ill-Fated New Year’s Resolution.” 1998. Recent developments in the treatment of OCD New England Journal of Medicine 338(1): 52–54. have improved outcomes and instilled a greater sense of optimism. The mainstays of treatment are pharma- cotherapy and cognitive-behavior therapy. Behavior ᨘ OBSESSIVE-COMPULSIVE therapies, which tend to be more successful for ritual- DISORDER izers, emphasize exposure paired with response pre- vention. Proponents of behavior therapies state that Obsessions or compulsions, or more commonly 60–70 percent of the patients who persevere with both, are the hallmark of obsessive-compulsive disorder the treatment improve markedly. New generations of (OCD). Obsessions are recurrent and persistent ideas, drugs work well at relieving both obsessions and com- thoughts, impulses, or images that are intrusive and pulsions in nearly 75 percent of patients. Treatment inappropriate and cause marked anxiety or distress. is long term because patients tend to relapse when Common obsessions include fears of harming other the drug is discontinued, often within weeks. Patients persons or sinning against God. Compulsions are repet- who complete a course of behavior therapy are less itive, purposeful, and intentional behaviors or mental likely to relapse. acts performed in response to obsessions or according —Ahmed Okasha to certain rules that must be applied rigidly. They are meant to neutralize or reduce discomfort or to pre- See also Behavior Therapy; Behavioral Disorders; Psychiatric vent a dreaded event or situation, even though the Disorders. sufferer generally knows the irrationality of these acts. Obsessions create anxiety, which is relieved by com- Further Readings pulsive rituals such as checking, washing, counting, American Psychiatric Association. 2000. Diagnostic and confessing, hoarding, and rearranging objects with Statistical Manual of Mental Disorders, 4th ed.—text revi- symmetry and precision. These symptoms can cause sion. Washington, DC: American Psychiatric Association. Andreasen, Nancy C. and Donald W. Black. 2000. Introductory functional disability as severe as psychosis and can Textbook of Psychiatry, 3d ed. (text revision). Washington, DC: make it virtually impossible to function at work or at American Psychiatric Association. home. Rasmussen, S. and D. Eisen. 1991. “Phenomenology of To receive a diagnosis of OCD, a person must have OCD: Clinical Subtypes, Heterogeneity and Coexistence.” either obsessions or compulsions that cause marked Pp. 13–43 in The Psychobiology of OCD, edited by J. Zohar, distress, consume more than one hour daily, or signif- T. R. Insel, and S. A. Rasmussen. New York: Springer. icantly interfere with the person’s normal routine, occupational functioning, or usual social activities and relationships. The person must recognize that ᨘ OCCUPATION the obsessions and compulsions are unreasonable. Many psychiatrically normal individuals—particularly In the context of disability and rehabilitation, the term children—have occasional obsessional thoughts or occupation is most widely used and discussed in the Occupational Therapy———1175 field of occupational therapy. While various defini- Occupation is also how persons make their place in tions exist, occupation generally refers to engaging in the social world. Most of the occupations that people do work, play, or activities of daily living. Work refers to are conducted among and with others. Occupations activities (both paid and unpaid) that provide services express and maintain the social fabric since they not only or commodities to others, such as ideas, knowledge, follow normative ways of doing things but also serve to help, information sharing, entertainment, utilitarian perpetuate those same social patterns they reflect. or artistic objects, and protection. Activities such as Occupation, disability, and rehabilitation were his- studying, practicing, and apprenticing improve abili- torically linked in the moral treatment movement of ties for productive performance. Thus, work includes the seventeenth century. Moral treatment saw mental activities engaged in as a student, employee, volun- illness as a result of persons’ loss of connection to the teer, parent, serious hobbyist, and amateur. Activities occupations that made up the mores or folkways. This of daily living, play, and work interweave and some- perspective presaged contemporary views of disability times overlap in the course of everyday life. Play as an interruption of a person’s participation in life refers to activities undertaken for their own sake. activities. Moral treatment emphasized using occupa- Examples of play are exploring, pretending, celebrat- tions (i.e., work and leisure activities) as ways to ing, engaging in games or sports, and pursuing encourage and enable people to reconnect with the hobbies. Play is the earliest occupation, persisting social world around them. The idea of using occupa- throughout life. Activities of daily living are the typical tion as a therapeutic tool has continued in occupa- life tasks required for self-care and self-maintenance, tional therapy and other disciplines that use activities such as grooming, bathing, eating, cleaning the house, as a means of habilitation and rehabilitation. and doing laundry. —Gary Kielhofner Occupation is recognized as a basic human need and as a determinant of well-being. This need is reflected See also Employment; Job Training; Occupational Therapy; in the strong drive to do things and the fact that people Rehabilitation; Work Incentives. flourish by engaging in practical, productive, and play- ful pursuits. The need for occupation entails the urge to Further Readings do things, to discover, to exercise capacity, and to expe- Bockoven, J. S. 1972. Moral Treatment in Community Mental rience oneself as competent. It is considered to be the Health. New York: Springer. product of an evolutionary process in which the com- Christiansen, C. 1999. “Defining Lives: Occupation as Identity— plex nervous system of humans gives them a pervasive An Essay on Competence, Coherence, and the Creation of Meaning: Eleanor Clark Slagle Lecture.” American Journal need to act. of Occupational Therapy 53:547–558. The term occupation derives from the Latin occu- Hasselkus, B. R. 2002. The Meaning of Everyday Occupation. pare and connotes taking hold of (i.e., occupying) time Thorofare, NJ: Slack. and place. Modern discussions of occupation highlight Kielhofner, G. 2004. Conceptual Foundations of Occupational the fact that occupations are how persons fill their time. Therapy, 3d ed. Philadelphia: F. A. Davis. Humans mark the passage of temporal cycles by what they do. Such terms as mealtime, playtime, and work- week illustrate how the patterns of time and doing are ᨘ OCCUPATIONAL THERAPY intertwined. Human awareness of the future also means that much of what people do in the present is aimed Occupational therapy is a health-related profession toward some state of affairs they wish for at a future that primarily serves persons with disabilities. It is point. Therefore, occupations not only fill and mark concerned with the well-being of persons in their time but also shape the course of people’s lives everyday occupations (i.e., work, play, and daily liv- over time. To a large extent, people engage in their ing tasks). The profession sees occupation as a neces- occupations so as to locate themselves in an unfolding sary aspect of life, contributing to physical, emotional, narrative with an eye toward a particular direction or and cognitive well-being. Occupational therapists outcome for that life story. work with individuals whose participation in occupation 1176———Occupational Therapy is threatened or hampered by impairments and/or in occupations. Occupational therapy services seek to environmental barriers. enhance individuals’ performance and satisfaction in The origins of occupational therapy are the work, play, and activities of daily living through reduc- eighteenth-century moral treatment approach. Moral ing impairments and through personal and environ- treatment was a European movement that saw mental mental adjustments. Services are offered to clients illness as a form of demoralization emanating from who range from preterm infants to the very old and to disruption of a person’s connection with the mores or persons with any type of physical, sensory, cognitive, customary activities of society. Moral treatment or emotional impairment. More recently, services are consisted of inviting and supporting participation in offered to persons whose work, play, and activities of everyday activities as a means of “remoralizing” indi- daily living are disrupted by war, poverty, violence, viduals by reintegrating them into ordinary routines of and other social injustices. Occupational therapists are living. Moral treatment exported to North America also increasingly involved with providing services to and practiced in the eighteenth and early nineteenth promote wellness and prevent loss of function. centuries. In the mid-1800s, overcrowding and under- Since the aim of occupational therapy is to enable funding of state hospitals led to its virtual demise. persons to have satisfying and productive engagement In the early 1900s, a diverse group of people (archi- in occupation, occupational therapists are trained tects, physicians, nurses, and leaders from the settle- to understand and address the interrelated biological, ment movement and industrial arts) began developing psychosocial, and environmental factors that contribute a form of treatment that used participation in work, to occupational problems. The common denominator crafts, leisure activities, and self-care as a form of of occupational therapy practice is involvement of therapy. These early leaders included the psychiatrist persons in occupations as a means to enhance their Adolf Meyer and social activist Eleanor Clarke Slagle. well-being. The profession is based on the premise that William Rush Dunton, another psychiatrist and a when humans engage in occupations using their physical descendent of Benjamin Rush (a physician and states- and mental powers, they can positively affect their man who introduced moral treatment to the United biological and psychological status. Consequently, States), was responsible for introducing and spreading occupational therapy focuses on empowering clients to literature and concepts from European moral treatment actively influence their own rehabilitation process and into occupational therapy. The early practice of the field outcomes, but selecting their own objectives for the (which quickly spread from application with persons kind of lives clients want to lead. who had mental illness to a variety of other impair- Occupational therapy ordinarily consists of one or ments) focused on helping patients reclaim function more of the following elements. First, therapists pro- and achieve satisfying everyday lives through active vide direct opportunities for clients to perform occu- participation in work, self-care, and leisure tasks during pations with an aim toward achieving personal change their rehabilitation. (e.g., development of new skills, learning to compen- In mid-twentieth century, the field became more sate for a permanent impairment, increasing self- closely aligned with medicine and the medical model. confidence, and discovering new ways to achieve As a consequence, more attention was paid to remedi- satisfaction in performance). The occupations that are ation of underlying impairments that contributed to used as therapy can include a wide range of activities disability. In the 1970s and 1980s, this emphasis on (e.g., sensory-motor play, crafts, work tasks, group impairments was increasingly criticized from within projects, leisure activities, school/classroom tasks, the field. Consequently, leaders sought to return and self-care activities such as dressing or bathing). occupational therapy to a more holistic practice cen- Second, occupational therapists provide and train tered on the client’s participation in everyday life clients in the use of various technical devices that occupations. extend limited capacity or compensate for lost capac- The contemporary focus of the field is, therefore, on ity. This technology ranges from simple adaptive the client’s challenges or difficulties with participation equipment that has been modified to accommodate O’Connor, Flannery (1925–1964)———1177 motor limitations to complex, computer-based equip- credentialing of educational programs and qualified ment that is used for communication and environmen- therapists. tal control. —Gary Kielhofner Third, therapists help clients remove barriers to engaging in occupations by modifying how tasks are See also Aids for Activities of Daily Living; Occupation. completed or through modifications of the environ- Further Readings ment. Tasks are modified through such strategies as simplifying steps, providing special sensory or mem- Kielhofner, G. 2002. A Model of Human Occupation: Theory and Application ory cues, or altering expectations for outcomes. , 3d ed. Baltimore: Lippincott Williams & Wilkins. ———. 2004. Conceptual Foundations of Occupational Therapy, Environmental modifications include such things as 3d ed. Philadelphia: F. A. Davis. (All or parts translated into removing architectural and structural barriers in the and published in German, Swedish, Japanese, Spanish, physical environment and changing attitudes of others Portuguese, and Dutch.) toward disabled persons in environments where the Websites person carries out occupations (e.g., home, school, and workplace). More recently, occupational therapy American Occupational Therapy Association, http://www.aota.org/ has increasingly included advocacy for social and pol- World Federation of Occupational Therapists, http://www.wfot icy change as a strategy for removing environmental .org.au/ barriers. ᨘ Fourth, therapists may enable persons to engage in O’CONNOR, FLANNERY occupations through counseling and problem solving (1925–1964) that encourage the client to choose and participate in American author occupations. Because occupational therapy is based on the client’s active involvement in doing things, the Flannery O’Connor was born in Savannah, Georgia, field pays particular attention to the client’s pers- the only child of a devout Catholic family. This back- pectives and experiences in order to facilitate this ground, as many critics have argued, shaped her later involvement. Client centeredness is an important fiction writing as part of the southern grotesque. Her theme in occupational therapy. father was a realtor and her mother was a member of In addition to working with individuals, many thera- a prominent political family (her grandfather had been pists have agencies, organizations, and entire commu- mayor of Milledgeville, Georgia, for many years). She nities as their clients. They may provide consultation graduated from Georgia State College for Women services on program design, optimal environments, in 1945 and then attended writer’s workshops at the training and development of staff and families, preven- University of Iowa. In 1950, she experienced her first tion programs for workers, and education programs for bout with lupus—a debilitating blood disease that she community members, all within the context of maxi- inherited from her father. O’Connor used crutches for mizing occupational functioning of the target group. mobility from 1955 onward. There are occupational therapists practicing in From the beginning, O’Connor’s work demon- more than 60 nations worldwide. Education ranges strated a somewhat perverse relationship between from occupational therapy assistants who earn two- religious and disability themes. In her second novel, year associate of arts degrees to therapists who earn The Violent Bear It Away (1960), the main character, professional doctoral degrees. In the United States, a Francis Marion Tarwater, becomes a minister in his graduate degree will be required for entry into the pro- youth and later baptizes and drowns Bishop, the “idiot” fession in 2007, but the most common educational son of his uncle. The act is performed in eugenic-like background worldwide is the bachelor’s degree. The style as one of mercy to save the cognitively disabled World Federation of Occupational Therapists is a character from Satan’s temptations. Likewise, in her major international body that recognizes educational famous short story “A Good Man Is Hard to Find,” a programs, although most countries have their own malignant criminal named “The Misfit” explains that 1178———Ontarians with Disabilities Act of 2001 (Canada) the easy expendability of human life was brought ᨘ ONTARIANS about by Christianity when Jesus was raised from the WITH DISABILITIES dead. This miraculous act precipitated attitudes of false reverence for death and afterlife as mere incon- ACT OF 2001 (CANADA) veniences that can easily be overcome. In the story “Good Country People,” the female protagonist dons The recognition that people with disabilities are an artificial leg as the result of a hunting accident. entitled to full citizenship and that government has an When she tries to sexually engage a country Bible obligation to take steps to make that vision a reality salesman named Manley Pointer, he runs off with her is a relatively recent development in Canada. It prosthesis as punishment for her “licentiousness.” reflects a transition from the view that people with Thus, O’Connor spent much of her writing career disabilities are inadequate and require charity and demonstrating the degree to which humans will tor- beneficence to an acknowledgment that the obstacles ture, injure, and kill each other as an expression of for full inclusion are barriers that prevent people with their investments in religious “morality.” disabilities from fully participating in all aspects of In the 1950s, she reflected directly on the social fate society. of disabled children by arguing that sentimentality The Charter of Rights and Freedoms provides expressed toward them—that which would deny their constitutional protection to persons with disabilities difficulties and suffering in a hostile world—is akin to by prohibiting discrimination on the basis of disabil- beliefs that sent individuals to the gas chambers during ity. Provincial and federal human rights legislation the Holocaust. Furthermore, O’Connor insisted that also prohibits discrimination on the basis of disability the parents of disabled children would hesitate to dis- in a number of key areas including employment and miss such a comparison of cultural attitudes toward the provision of goods and services to the public. disability even though her parallel may seem extreme However, the charter and human rights legislation to many. In making this argument, the disabled author require individual complaints to be filed for each act identified sentimentality as a key antagonist of dis- of discrimination and involve a lengthy legal proceed- abled people with respect to more meaningful engage- ing. While human rights legislation may allow for sys- ments with the experience of impairment. O’Connor temic litigation and proactive approaches to prevent died in 1964 at the age of 39 following an ill-fated and remove barriers, the lack of a comprehensive barrier- surgery that reactivated her lupus. removal statute was identified as an important deficit preventing the full participation of persons with dis- —David T. Mitchell abilities. Requiring individuals to file complaints is difficult where people are afraid to disclose that they See also Novel, The; Religion. have a disability. Between 1995 and 2001, the Ontarians with Further Readings Disabilities Act committee, a province-wide coalition DiRenzo, Anthony. 1993. American Gargoyles: Flannery of people with disabilities and organizations represent- O’Connor and the Medieval Grotesque. Carbondale: ing people with disabilities, was formed to lobby for Southern Illinois University Press. comprehensive barrier-removal legislation in Ontario. Driskell, Leon V. and Joan T. Brittain. 1971. The Eternal Crossroads: The Art of Flannery O’Connor. Lexington: Legislation was introduced in November 2001 and University Press of Kentucky. went into effect on September 30, 2002. It requires the Giannone, Richard. 2000. Flannery O’Connor, Hermit Novelist. provincial government, municipal governments, hos- Urbana: University of Illinois Press. pitals, educational institutions, and public transit orga- McMullen, Joanne H. 1996. Writing against God: Language nizations to develop barrier removal plans within one as Message in the Literature of Flannery O’Connor. Macon, year. The plans must set out how organizations intend GA: Mercer University Press. Mitchell, David T. and Sharon L. Snyder. 2000. Narrative to identify existing barriers, how they plan to remove Prosthesis: Disability and the Dependencies of Discourse. those barriers, and how they intend to prevent the cre- Ann Arbor: University of Michigan Press. ation of new barriers. There is no specific obligation Oppression———1179 in the legislation to remove a certain number of barriers Further Readings or types of barriers within any time frame. The plans Ontarians with Disabilities Act, S.O. 2001, Chapter 32 (2001). are to be developed in consultation with people with (http://www.e-laws.gov.on.ca/DBLaws/Statutes/English/ disabilities. The plans must be filed with the newly 01o32_e.htm). created Accessibility Directorate and will be available Websites to the public. The legislation does allow the govern- ment to develop regulations and guidelines on the Accessibility Ontario: Ontarians with Disabilities Act, 2001, plans, but to date none have been developed. As of http://www.gov.on.ca/citizenship/accessibility/english/act 2001.htm January 2003 the enforcement provisions of the legis- Ontarians with Disabilities Act Committee, http://www lation had not been proclaimed. .odacommittee.net/ The legislation also permits the government to extend its application to the private sector, but again, this has ᨘ not been done. The government is seeking voluntary OPPRESSION compliance by the private sector. There are a number of other obligations placed on the provincial government, Oppression occurs when individuals are systemati- such as ensuring that all of their websites meet accessi- cally subjected to political, economic, cultural, or bility standards. social degradation because they belong to a specific The legislation does not create an independent body, social group. In 1970, Paulo Freire argued that the but it does enshrine in legislation the Accessibility experience of oppression is marked by dehumaniza- Directorate as a part of the public service. It also creates tion, conquest by the oppressed group, dividing and a provincial Accessibility Advisory body, as well as ruling by the oppressed group, manipulation, cultural requires municipalities of more than 10,000 people to invasion, “forcing the oppressed group to adopt the create their own advisory councils. beliefs of the oppressors,” exploitation, marginaliza- The legislation specifically states that it does not in tion, power inequities, and violence. any way diminish or affect the rights of people with disabilities under the Ontario Human Rights Code. OPPRESSION AND THE The definition of disability in the Ontarians with COMPLEX DISABLED PERSON Disabilities Act is inclusive and specifically includes mental disability and brain injury. The definition in Oppression is often a topic when minority groups and the Ontario Human Rights Code was amended to be the dispersion of power are discussed. In the African consistent with the definition in the Ontarians with American civil rights movement, the women’s move- Disabilities Act. ment, anti-apartheid movements, and many civil and The legislation also requires that people with dis- human rights movements globally, oppressed people abilities and other stakeholders must be given an oppor- have sought to redistribute power and increase equal- tunity to consult on any proposed regulations developed ity, all citing a common theme of oppression. under the act. It allows for the development of guide- Many parallels have been drawn between the black lines and standards, although there are no timelines in community and the disability community in North place for them to be developed. America. The idea of the minority model being applied In a provincial election held in October 2003, the to both groups is anchored in the social model that has Ontarians with Disabilities Act was raised as an issue flourished in British and American disability studies. with the new government promising to strengthen the This model argues that social attitudes rather than legislation within its first year in office. Consultations physical or mental inabilities are the primary source started in January 2004, and the legislation was passed of problems confronting disabled people. In addition, and went into effect in 2005. disability theorists argue that many aspects of the physical and social environment are determined by —Patti Bregman public policy and that policy is a reflection of pervasive See also Disability Law: Canada. societal attitudes and values. This may have a distinct 1180———Oppression impact on those who have intersecting identities that revolution as it did in race politics. In turn, the domi- may be targets for oppression. nant culture’s ideas of the “normal-functioning body Consider, for example, a black woman who is and mind” have become mainstream in black commu- disabled as defined by Western disability theorists. nities, and these ideas lend themselves to inadvertent Persons such as this, who are members of more than oppression from a group that is familiar with the one minority group, often experience tension, and they trauma of daily oppression. rank their membership in such groups in terms of the Although incorporation of dominant beliefs toward characteristics they consider most appealing and most the disabled has occurred, it is not an absolute within central to their identity. What is appealing to a person the black community. Blacks are also influenced by a is often dictated by the culture that the individual iden- historic ostracism based on race, and they have learned tifies with. Often, even within minority groups, the to accept a wider range of difference as normal and dominant culture influences beliefs about what charac- acceptable. Thus, disability oppression is often seen teristics are of value. Cultural invasion is a phenome- enforced on those whose differences lie outside the non discussed by Freire (1970) where the invaders, range that blacks have carved out as normal and func- “persons outside of the oppressed group,” penetrate the tional, and it places those on the fringes at high risk for cultural context of another group, disrespecting the “majority norm enforcement.” latter’s potentialities. In this invasion, the invaders If ethnicity complicates disability, then adding impose their views of the world—right and wrong, gender to the equation can certainly offer an additional good and bad, inferior and superior—on those whom dimension. Rosangela Berman Bieler, a Brazilian dis- they invade, and they inhibit creativity by curbing abled woman, argued in 1998 that in spite of the similar expression of the less powerful group. Those invaded discrimination that disabled men and women face, there are then expected to pick up the values of their oppres- is a point where they differ; that difference is seen in the sors and accept them as their own. Many disabled cultural norms accepted by majority society concerning blacks have internalized the views of the dominant sexuality and affection in regards to disabled women. group concerning both race and disability. In a society where body defines you, the black and Oppression is expressed in the above instance by disabled female finds her body on the lowest stratum of locating the sources of oppression within the body beauty in terms of the dominant culture’s standards. of the disabled person, thereby blaming the individual Women of color with disabilities are not unique in their for experiences of oppression, because his problems struggle to fight the stereotypes of asexuality and abnor- are housed within him. This is done in an attempt to mality concerning the disabled female body, but an ethnic remove societal responsibility for barriers that may be female does face the added stigma of being an “other,” placed on the oppressed group. The internalization of already considered less than the dominant culture’s race hatred has been argued well; however, less theo- acceptability for beauty. Thus, not only does the disabled rized is the acceptance of dominant cultural views con- black woman receive societal messages that she is less cerning disability status and the effect this has on the than female because of her disability, she also receives the experience of oppression for persons who hold multiple message that she is less than female because she is black. minority status. As a trinity, disability, blackness, and femaleness repre- It is not enough that the skin is a culprit; now the sent a union of oppression that is focused on the body biological traits beneath the skin have been targeted. of an individual who can be devalued from many angles. Such an argument is not new to blacks as it was seen Her image is tarnished by her triple minority status, and it in the measuring of black skulls to prove innate inferi- is acceptable to treat her as less than human. ority and a lack of humanness in an effort to legitimize mistreatment of blacks based on race. Over the years, THE UNIQUENESS black theorists and scientists have taken up this argu- OF DISABILITY OPPRESSION ment to disprove it, but the same has not been success- fully done for disability, and blacks have not openly Though oppression based on race and gender has recognized this similarity in a way that would spark similarities to oppression experienced by those who are Oralism———1181 disabled, disability oppression is unique in some eliminate disability oppression as a standard experi- respects: People are born black, or female, but can ence for the disabled. become disabled at any time in their lives. There is —Nefertiti L. Nowell a fear associated with the unknown, and to distance oneself helps to keep a separation between what one See also Attitudes; Disability Culture; Disability Pride; Gender; currently is and what one does not want to be. This Normality; Racism. distance is seen in North America and also globally, and the fear of becoming disabled helps to keep disability Further Readings oppression grounded in many cultures. The establish- Alston, R. J. and C. J. McCowan. 1994. “African American ing of oppression based on the fear of a shift in social Women with Disabilities.” Journal of Rehabilitation Issues category separates disability-based oppression from and Concerns (Winter): 36–40. race-based oppression; in other words, people do not Americans with Disabilities Act of 1990. Public Law 101–336, 42 U.S.C. § 12101, 1990. wake up after 20 years of being white and suddenly Barnes, C., G. Mercer, and T. Shakespeare. 1999. Exploring possess the characteristics of blackness. Disability: A Sociological Introduction. Oxford, UK: Polity. An additional unique characteristic of disability- Boyd-Franklin, N. 1991. “Recurrent Themes in the Treatment of based oppression is the need that a disabled person African-American Women in Group Psychotherapy.” Women may have for personal assistance. This opens doors of and Therapy 11(2): 25–39. Nothing about Us without Us: Disability oppression in different ways than does race or gender. Charlton, J. I. 1998. Oppression and Empowerment. Berkeley: University of Consider an individual who needs daily assistance California Press. with bathing or dressing. If the personal assistant Freire, P. 1970. Pedagogy of the Oppressed. New York: Continuum. refuses to help, or is late and services are not rendered, Vernon, A. 1999. “The Dialectics of Multiple Identities and the the disabled person is in a situation of less power, of Disabled People’s Movement.” Disability & Society less authority, of “dif-ability,” and is thus oppressed 14:385–398. Justice and the Politics of Difference. based simply on the need for personal assistance. Young, Iris M. 1990. Princeton, NJ: Princeton University Press. These occurrences are specific to those who have disability status. Websites Black women’s issues, www.afro-vision.com/black_women.htm CONCLUSIONS When grappling with the existence of oppression, we ᨘ ORALISM must be informed by our surroundings, by the oppres- sion that others have experienced and navigated Oralism refers to one of the two principal approaches through, while also being aware of the nuances that to and philosophies of teaching language to the deaf; are present in oppression experienced in the context it is contrasted with manualism. Oralism assumes that of disability. Oppression is not just an experience but speech is the most evolutionarily advantageous form also a social phenomenon that has been globally of language and that the ability to use and/or under- expected. There is always a group that assumes a sub- stand spoken language is what separates humans from ordinate position. The disabled community faces mul- lower species. Thus, oralism devotes considerable tiple levels of the expression of oppression, because attention to teaching deaf and hearing-impaired disability inhabits locations that cross and encompass people not only how to produce speech but also how gender, race, socioeconomic status, disability type, to read lips. Manualists take the opposite position, lifestyle, age, religious beliefs, and nationality. It must regarding sign language (in its various forms, from be realized that disability oppression is not housed in American Sign Language to Signed English, and their genetics but lives in the cultural norms that have been national variants) as “natural” languages, possessing accepted as mainstream beliefs in the societies in all the important characteristics of any language, such which we live. Mainstream cultural norms concern- as morphology, syntax, and markers for semantic and ing disability must be altered in ways that will help rhetorical intensifiers and connotations. In its earliest 1182———Orthopedics years, manualism also carried with it an evangelical educational movements as mainstreaming and inclu- mission, as a way of spreading gospel to those ordi- sion are often seen as vestiges of or returns to the pre- narily considered excluded from its transmission. cepts of oralism, in that they do not create a space for In the nineteenth century, when the great debates Deaf people to enact their own linguistic culture and between oralists and manualists first took shape, one of that they privilege speech over sign. Similarly, more the most famous proponents of oralism was Alexander recent debates over cochlear implant surgeries, partic- Graham Bell, whose invention of the telephone was in ularly for children during their most sensitive years part a by-product of his work on creating communica- for language acquisition, revives the binary division tion systems for the deaf (Bell was married to a deaf between speech and sign that oralism raised almost woman). His father, Alexander Melville Bell, a famous two centuries ago. teacher of elocution, developed a system called “Visible —Bruce Henderson Speech,” designed to assist in teaching deaf people how to acquire spoken language. The Alexander Graham See also Alexander Graham Bell; Deaf, History of the; Deaf Bell Association, a foundation named after him, contin- Culture; Speech and Language Pathology. ues today and is committed to furthering Bell’s convic- tion that the proper way for deaf and hard-of-hearing Further Readings (their term) people to communicate is through spoken Boyton, Douglas C. 1996. Forbidden Signs: American Culture language. and the Campaign against Sign Language. Chicago: There were eugenic and racist elements to the University of Chicago Press. oralism versus manualism debates, as well. Bell, for Lane, Harlan. 1989. When the Mind Hears: A History of the Deaf. example, believed that manualism needed to be New York: Viking. A Place done away with in large part because it encouraged in- Van Cleve, John Vickrey and Barry A. Crouch. 2002. of Their Own: Creating the Deaf Community in America. breeding between deaf people, thus leading to a greater Washington, DC: Gallaudet University Press. possibility (in the case of hereditary deafness) of the continuation of deafness, since manualism allowed deaf Websites people to remain segregated from the hearing. Also, by the end of the nineteenth century, it was the case that Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), http://www.agbell.org there was a racial gulf between oralists and manualists, and only people of color were being taught exclusively through manualist approaches (presumably because ᨘ ORTHOPEDICS educators either believed them incapable of learning through oralist methods or because they did not see the The practice of orthopedics has a long history. From reason for nonwhites to have the skills they associated its first inception in France in 1741 to the present, with spoken language). orthopedics is a specialty that has evolved to fit the Oralism also became a platform for the development changing nature of disabling conditions with the rise of the teaching of deaf people as a form of “women’s of technology. work” in the United States: Because of the American Despite its long history, prior to the nineteenth Civil War, men, who were the principal teachers up until century very little orthopedic surgery was performed. that time, were called to battle, and women took over Generally, orthopedics was confined to the correction some of these roles. After the war, the lowering of the of deformities by means of external apparatus, reduc- age at which deaf children began to receive instruction tion in the case of dislocation, and amputation. With and the economic advantages of assigning such work to developments in other spheres such as anesthetics, anti- women helped increase the role of women in this arena. septic techniques, and X-rays, more surgical means In recent decades, as deaf people became Deaf (i.e., were at the disposal of orthopedists. In the nineteenth assumed a cultural identity that involved pride in their century, orthopedics began to formally establish itself status), oralism has become once again a more criti- as a specialty, particularly in the United States. The cized approach to language education. Such larger American Orthopaedic Association was founded in Osteoporosis———1183

1887, its German counterpart in 1901, and the British materials have been developed for joint replacement Orthopaedic Association was established in 1918. surgery including titanium, combination alloys, and Specialist hospitals and clinics such as the Boston ceramics. High technology now plays an important role Orthopedic Institution and Fracture Clinics in Manchester in joint replacement with new techniques such as mini- and Liverpool were established in the late nineteenth mally invasive surgery (MIS), which usually results in a and early twentieth centuries. While new techniques shorter recovery time for the patient. These innovations were created, such as surgery for open reduction of con- have created even more specialization in orthopedics, genital dislocation of the hip and bone lengthening with which now includes approximately 12 specific areas direct skeletal traction, it was during World War I that of subspecialization including sports medicine and orthopedic surgery came to the fore. Orthopedic sur- arthroscopy, trauma, tumor, and metabolic disease. geons’ skill prevented permanent disability from skele- Manufacturers play an important role in the marketing tal injuries, halted deaths from gas gangrene through and promotion of orthopedic products, a multi-billion- amputations, and mediated highly complex procedures dollar business. on nerves and tendons. The need was so great that —Julie Anderson American orthopedists were imported even before the United States entered the war in 1917. See also Accidents; Arthritis and Cartilage Diseases and Injuries; After the war, the orthopedic surgeons’ focus con- Disabled Veterans; Dwarfism; Surgery and Disability. centrated once more on civilians. Hospitals that had housed disabled ex-servicemen were turned into institu- Further Readings tions for disabled workmen and children. Surgery was Cooter, Roger. 1993. Surgery and Society in Peace and War: conducted on tubercular joints so prevalent in Britain Orthopaedics and the Organisation of Modern Medicine and other disabling conditions such as clubfoot. In the 1880–1948. Hampshire, UK: Macmillan. The Evolution of Orthopaedic United States, until the development of vaccines in the Klenerman, Leslie, ed. 2002. Surgery. London: Royal Society of Medicine Press. late 1950s, orthopedists treated those who had con- Schlich, Thomas. 2002. Surgery, Science and Industry: A tracted and recovered from paralytic polio with a variety Revolution in Fracture Care, 1950s-1990s. Basingstoke, UK: of methods. As previously mentioned, discoveries in Palgrave. other spheres have had an impact on orthopedics; for instance, the development of sulphonamides and peni- Websites cillin in the late 1930s and 1940s decreased the risk of American Orthopaedic Association, http://www.aoassn.org/ bone infection in compound fractures. LeadershipAcademicLRP_AdvBoardBook.asp The late 1950s and 1960s were a time of great change British Orthopaedic Association, http://www.boa.ac.uk/ in orthopedics. Although artificial joints had been designed and implanted since the late nineteenth ᨘ century, it was in the late 1950s that Sir John Charnley, ORTHOTICS at the Wrightington Hospital in Wigan, England, per- fected his two component combination plastic and stain- See Mobility Aids less steel hip replacement. His new procedure changed much of the focus of orthopedics to implanting devices ᨘ OSTEOPOROSIS that replaced worn joints affected by osteoarthritis. This innovation was taken up around the world, and other Osteoporosis (porous bone), named in the 1820s by artificial joints were designed. Successful replacement Alsatian pathologist Jean Georges Chrétien Fréderic knees were first inserted in 1968 and were followed by Martin Lobstein “the Younger,” is characterized by the shoulder, elbow, ankle, and hand. In Switzerland, the low bone mass and deteriorated bone tissue, causing AO (Arbeitsgemeinschaft fur Osteosynthesefragen; fragile bones and increased risk of fracturing. Bone Association for the Study of Internal Fixation) revolu- compression or fracturing most frequently affects the tionized fracture care, rejecting plaster casts for surgical hip, spine, or wrist and causes loss of height and/or intervention with a system of screws and plates. New kyphosis (dowager’s hump). Persons with severe 1184———Osteoporosis osteoporosis may experience spontaneous and/or BMD criteria established by the World Health traumatic bone breakage; pain; mobility limitations; Organization resulted in the diagnosis of millions of physical, emotional, or psychological disabilities; or asymptomatic patients. More than half of all women and death. about one-third of all men over age 50 are predicted to In 1940, Fuller Albright, a Boston endocrinologist, experience osteoporotic fractures during their lives. discovered a link between estrogen loss at menopause Incidence and cost estimates are widely employed by and “thin bone.” Albright initiated estrogen treat- commercial, medical, and advocacy interests to influ- ments to osteoporotic women. Its use became wide- ence governments and consumers. spread only in the mid-1960s when Robert A. Wilson, Since the late 1990s, nonestrogenic drugs (e.g., bis- a Brooklyn gynecologist, promoted estrogen therapy, phosphonates) have been widely prescribed to prevent newly available in pills, as a cure for all menopausal and repair bone loss. In 2003, in the United States, the deficits in popular and medical media. Researchers Women’s Health Initiative clinical trials indicated in the late 1970s associated estrogen treatment with increased risk of cancer and heart disease from use of reproductive system cancers, and its use declined. estrogen with progestin. Postmenopausal women with Osteoporosis remained obscure until 1984, when a osteoporosis are now advised to avoid long-term hor- Consensus Conference through the U.S. National mone replacement therapy. Institutes of Health declared estrogen and calcium stan- Despite widespread bone densitometry testing in dard treatments. North America, many cases go undiagnosed, even when Historically, osteoporosis was mostly associated serious bone fracturing has occurred. Science cannot yet with older women, but others at risk include aging men, accurately predict which individuals with low BMD will persons with eating disorders, pregnant teenagers, and develop fractures or become disabled, but geneticists female athletes. Men generally have higher bone mass, and molecular biologists are pursuing subcellular stud- lose bone density at a slower pace, and develop bone ies. Programs to prevent falls play an important role in loss at older ages. Controversy remains about whether reducing incidence of broken hips, which often lead to osteoporosis is a disease or a natural concomitant of disability and/or death in seniors. aging. North American patient activists and medical Genetic, behavioral, and environmental factors and experts established voluntary agencies (e.g., National their interactions contribute to osteoporosis. All racial Osteoporosis Foundation, Osteoporosis Society of groups are susceptible, although incidence varies. Peak Canada) in the 1980s, which lobby governments, edu- bone mass (PBM), the amount of bone tissue attained cate the general public, and provide services for persons by adulthood, is a major determinant of fracture risk. with osteoporosis. Smoking, excess alcohol, excess caffeine, lack of or —Elaine Berman excess exercise, and lack of sunshine deplete bone tissue. Secondary osteoporosis may result from other See also Aging; Aging, International; Hip Fracture. illnesses (e.g., end-stage kidney disease), medical treat- ments and practices (e.g., removal of ovaries, institu- Further Readings tionalization), specific drugs (e.g., long-term steroid Berman, Elaine S. 1998. “The Construction of Osteoporosis.” use), and other hormonal and nutritional deficiencies M.A. thesis, Department of History, Queen’s University, (e.g., vitamin D, calcium, parathyroid hormone, calci- Kingston, Ontario. tonin, and fluoride). ———. 2000. “‘Too Little Bone’: The Medicalization of Bone densitometry proliferated during the late 1980s; Osteoporosis.” Journal of Women’s Health and Law 1(3). campaigns to promote screening to measure bone min- Schapira, D. and C. Schapira. 1992. “Osteoporosis: The Evolution of a Scientific Term.” Osteoporosis International 2:164–167. eral density (BMD) of older women further increased recognition of this “silent” epidemic and the estimates Websites of persons affected. Definitions of osteoporosis and National Resource Center for National Institutes of Health Website osteopenia (borderline low bone density) based on for Osteoporosis and Related Diseases, www.osteo.org Outcome Measures———1185

ᨘ OUTCOME MEASURES outcomes. As more of the population experience the limitations of aging, chronic illness, and disability, Functional disability and quality of life are key due to increased lifespan, a need has developed for a outcomes that influence patients’ demand for care, as more humanistic form of health care that incorporates well as their compliance and satisfaction with treat- a systematic assessment of the patient’s perceptions. ment. Over the past few decades, there has been a shift Interest in subjective patient-based assessment from traditional physician-focused assessment, with accords with the World Health Organization’s (WHO) its dependence on physiological and radiological mea- now classic characterization of health, which incor- surement, toward methods based on the belief that porates autonomy and physical, mental, and social patients can provide accurate and meaningful assess- well-being and not merely the absence of disease. ments of their own health. Such measurements have Health-related quality of life is a concept that attempts found a natural home in the field of disability, where to encompass the spirit of the WHO definition of clinician-based assessments can give only a limited health by incorporating both personal health status picture of the impact of illness on individuals. Indeed, and social well-being in assessing the health of indi- clinical assessments have tended to overestimate the viduals and populations. Although there is no agreed- adverse effects of disability on self-reported quality on single definition of health-related quality of life, of life. For example, in one study over 80 percent of researchers for the most part concur on the compo- patients with spinal cord injury anticipated average, or nents that should be included, such as general health, better, quality of life, while less than one-fifth of those physical functioning, emotional state, subjective well- treating them rated their potential health state so pos- being, and social support. itively. Such a mismatch in perceptions of the impact Indicators of health-related quality of life typically of disability means that appropriate outcome mea- incorporate patient views gained from interviews sures must be developed that assess what is important and/or focus groups. It is essential that, once a set of to patients in terms of their own health-related quality questions has been identified, the instrument has good of life. psychometric and statistical properties. An instrument Results from studies of patients with disabilities that evaluates outcomes of treatment must measure have often shown that they view their health in a pos- reliably and accurately what it purports to measure. itive way and that their self-reported quality of life Minimally, outcome measures should manifest the is often very comparable to similarly aged people not following attributes. reporting any disabilities. Manifestly, however, the impact of disability can also have dramatic negative 1. Reliability. The instrument should produce the consequences for patients, and appropriate outcome same, or very similar results, on two or more admin- measures can be useful to assess patients’ reactions to istrations to the same respondents, provided, of treatment and therapy. For example, the quality of life course, there is good reason to believe that the health of stroke patients has been found to decrease over status of the patients has not changed. The difficulty time, despite clinical assessments remaining stable. with such a method of validating a questionnaire rests In trials of interventions, patient-based outcome on the uncertainty of whether results that may indicate measures can be used to assess their efficacy, and they a questionnaire is unreliable are in fact an indication provide an important addition to clinical assessments. of real change in health status. Due to the potential The increasing use of subjective health indicators difficulties in gaining an accurate picture of reliability has been reflected in the number of research papers in this way, many researchers adopt the Cronbach’s reporting aspects of subjective health status or health- alpha statistic, to determine internal reliability. related quality of life. This reflects a growing interest Internal reliability refers to the extent to which items on the part of physicians and health researchers in on a scale are tapping a single underlying construct, using the patient’s viewpoint in formulating treat- and therefore there is a high level of interitem correla- ment plans and monitoring the quality of medical care tion. Assuming that such high levels of interitem 1186———Outcome Measures correlation are not a product of chance, it is common- change, others were not. For example, they found that place to assume that a high alpha statistic indicates no respondent, either at baseline or at follow-up, the questionnaire is tapping an underlying construct endorsed the item “I do not feed myself at all, and must and hence is reliable. However, due to many potential be fed,” which produced results that are clearly repro- sources of variability, high internal reliability reported ducible but not informative in the context of that in only a single study should be viewed cautiously. particular trial. Such unresponsive items cannot prove useful in detecting changes over time as a function of 2. Face validity. Face validity refers to whether items treatment. Consequently, when selecting a measure for on a questionnaire appear to make sense and can be inclusion in an evaluative study, researchers should easily understood. An instrument that contains ambi- select instruments that contain appropriate items for the guities or illogical response categories is very unlikely patient group and that are likely to detect changes. to either be reliable over time or manifest high levels of internal consistency. In studies that are undertaken 7. Interpretability. It is essential for measures to cross-culturally, it is essential that translations of an provide meaningful data. For example, in terms of instrument have been validated and that translations of change scores a number of instruments provide guide- items should retain the original meaning. lines for interpreting changes that are important to patients, rather than simply being statistically signifi- 3. Content validity. This refers to the choice of appro- cant. Minimally important differences (MIDs) are priate items in a questionnaire. Items included in a those changes that patients themselves have judged as measure should reflect the underlying domain being being small but meaningful. These MIDs can be use- measured. ful both for interpreting results of longitudinal data, and calculating sample sizes for trials. 4. Criterion validity. This is the ability of an instru- ment to correspond with other measures. However, The most commonly used measures are generic finding a “gold standard” instrument is rare, and only instruments that have been designed for use in any really possible in instances where a shorter-form mea- illness group, population, or sample, for example, the sure is being created from an established longer SF-36 and SIP. Such measures have gained widespread instrument. For example, results of the eight-item SF- use, and consequently substantial amounts of data 8 have been compared with results from the 36-item exist on reliability, validity, and sensitivity to change. SF-36 Health Survey. Furthermore, data from general populations exist, enabling comparison of results with normative sam- 5. Construct validity. This refers to the ability of an ples. Any given disease-specific measure is, by its very instrument to reflect previously hypothesized patterns nature, less widely used but more likely to reflect con- of data. For example, physical health typically deteri- cerns typical of the specific illness group for which it orates with age, and any questionnaire designed to was designed. measure this should reflect this pattern in its results. —Crispin Jenkinson 6. Sensitivity to change. Measures must be responsive, that is, sensitive to meaningful change. When evaluat- See also Functional Assessment; Quality of Life. ing health care interventions, responsiveness is a Further Readings crucial aspect of a measures utility. It is possible, for example, to have measures that are reproducible and Albrecht, Gary. 1994. “Subjective Health Assessment.” In valid but not responsive. Gordon Guyatt and colleagues Measuring Health and Medical Outcomes, edited by Crispin (Guyatt et al. 1989) give the example of the Sickness Jenkinson. London: UCL Press. Bergner Marilyn, Ruth Bobbitt, William Carter, and Betty Gilson. Impact Profile (SIP) in a controlled trial of different 1981. “The Sickness Impact Profile: Development and Final strategies for managing back pain. They found that Revision of a Health Status Measure.” Medical Care while many parts of the SIP were useful in evaluating 19:787–805. Outcome Measures———1187

Eisenberg, Myron G. and Constance Saltz. 1991. “Quality of Life Staquet, Maurice J., Ron Hays, and Peter Fayers. 1998. Quality of among Aging Spinal Cord Injured Persons: Long Term Life Assessment in Clinical Trials: Methods and Practice. Rehabilitation Outcomes.” Paraplegia 29:514–520. Oxford, UK: Oxford University Press. Guyatt, Gordon, Richard Deyo, Charlson Mary, Levine Mark, and Streiner, David L. and Geoffrey R. Norman. 1995. Health Mitchell Alba. 1989. “Responsiveness and Validity in Health Measurement Scales: A Guide to Their Development and Use, Status Measurement: A Clarification.” Journal of Clinical 2d ed. Oxford, UK: Oxford University Press. Epidemiology 42:403–408. Suenkeler, Inga H., Margarete Nowak, Björn Misselwitz, Jenkinson, Crispin, Ray Fitzpatrick, Josephine Norquist, Leslie Wolfgang Schreiber, Wolfgang Oertal, and Tobias Back. Findley, and Kim Hughes. 2003. “Cross Cultural Validation of 2002. “Timecourse of Health-Related Quality of Life as the Parkinson’s Disease Questionnaire: Tests of Data Quality, Determined 3, 6 and 12 Months after Stroke: Relationship to Score Reliability, Response Rate and Scaling Assumptions in Neurological Deficit, Disability and Depression.” Journal of America, Canada, Japan, Italy and Spain.” Journal of Clinical Neurology 249:1160–1167. Epidemiology 56:843–847. Ware, John E., Mark Kosinski, James Dewey, and Barbara Jenkinson, Crispin and Hannah McGee. 1998. Health Status Gandek. 2001. How to Score and Interpret Single-Item Measurement: A Brief but Critical Introduction. Oxford, UK: Health Status Measures: A Manual for User of the SF-8 Radcliffe Medical Press. Health Survey. Lincoln, RI: QualityMetric. Kline, Paul. 2000. A Psychometrics Primer. London: Free Ware, John E. and Cathy Sherbourne. 1992. “The MOS 36-Item Association Books. Short Form Health Survey 1: Conceptual Framework and McDowell, Ian and Claire Newell. 1996. Measuring Health: A Item Selection.” Medical Care 30:473–483. Guide to Rating Scales and Questionnaires, 2d ed. New York: World Health Organization. 1984a. “The Constitution of the Oxford University Press. World Health Organisation.” WHO Chronicle 1:13. Sprangers, Mirjam A. and Neil K. Aaronson. 1992. “The Role of ———. 1984b. Uses of Epidemiology in Aging. Technical Report Health Care Providers and Significant Others in Evaluating Series 706. Geneva: World Health Organization. the Quality of Life of Patients with Chronic Disease: A Review.” Journal of Clinical Epidemiology 45:743–760. P

ᨘ PAIN phantom limb pain; carpal tunnel syndrome (repetitive strain); and the causalgiform disorders (in current ter- Chronic pain may well be the most common cause of minology, chronic regional pain syndrome [CRPS]). recurrent and permanent disability in the developed The latter are characterized by persistent burning pain, world today. According to a 1999 Gallup survey, 89% usually located in an extremity, which may be referred of Americans suffer from pain at least once a month, elsewhere in the body; allodynia, or painful sensation and 43 percent—some 83 million—report that pain fre- in response to an innocuous stimulus (such as light quently affects their participation in some activities. touch); and hyperesthesia, or severely painful sensa- More than 26 million (15 percent) describe their recur- tion in response to a mildly painful stimulus (pressure rent monthly pain as severe. Pain accounts for an esti- or pinprick). mated 20 percent of health care visits and 10 percent of Regardless of its specific location and nature, prescription drug sales. Yet less than 1 percent of the chronic pain often takes over the sufferer’s life. The U.S. National Institutes of Health’s budget supports individual finds it difficult and tiring to work, exer- research into the mechanisms and management of pain. cise, and participate in normal activities; withdraws Pain is classified as chronic rather than acute when from other people; and becomes both anxious in it persists beyond the normal healing period for any expectation of severe pain and depressed by its unre- illness or injury and appears likely to recur or con- lenting persistence. Although many treatments are tinue indefinitely. The insurance industry defines available, there is no one therapy that works in all three months as the minimum for chronicity, but a cases, and many patients become angry and frustrated period as short as two or three weeks can establish a at what they perceive as the indifference or ignorance chronic condition in many instances. Several organic of the medical profession. diagnoses such as arthritis, cancer, diabetes, and her- pes are associated with severe chronic pain. HISTORY Many Americans suffer, however, from disorders defined by the pain alone. These include migraine and Nineteenth-century British, German, and French other forms of chronic headache; low back pain; physicians were the first to recognize the problem of abdominal and pelvic pain; temporomandibular joint chronic “pains without lesion” and attributed them disorder; trigeminal neuralgia, an intense stabbing to a functional disorder or persistent irritation of the pain throughout the facial area, triggered by the fifth nervous system. Johannes Müller’s concept of cranial nerve; fibromyalgia, defined as widespread Gemeingefühl, or “cenesthesis,” an individual’s ability musculoskeletal pain, often accompanied by fatigue; to correctly perceive internal sensations, was another

1189 1190———Pain of the creative etiologies proposed. S. Weir Mitchell, endorsed Sherrington’s insistence that the central the American neurologist who observed many Civil nervous system integrated inputs from the periphery War soldiers afflicted with causalgia, phantom limb and proposed that pain was a result of the brain’s pain, and other painful conditions long after their recognition of spatial and temporal patterns of sensa- original wounds had healed, wrote movingly of their tion. Leriche, based on his work with injured men suffering. He described classic causalgia (the burning during World War I, suggested that a nerve injury that pain following a nerve injury) as “the most terrible of damaged the myelin sheath surrounding the sympa- all the tortures....Under such torments[,]...the thetic nerves might create some kind of artificial most amiable grow irritable, the soldier becomes a synapse between these and contiguous sensory nerves, coward, and the strongest man is scarcely less nervous leading to sensations of pain in response to normal than the most hysterical girl.” Despite the odd and stimuli and internal physiological activity. Livingston, often hostile behavior of his patients, Mitchell was who worked with patients with industrial injuries in convinced of the reality of their physical suffering. the 1930s, diagrammed a feedback loop within the ner- However, by 1900, specific diagnostic tests and vous system, which he termed a “vicious circle,” theo- signs had redefined the practice of neurology, leaving rizing that continuing severe pain over a period of time little room for unexplainable chronic pains without led to functional and organic changes in the nervous other physiological symptoms. At the same time, system, producing a chronic pain state. practitioners of psychiatry and the new field of These ingenious ideas were largely ignored until psychoanalysis found that “hysterical” pains offered World War II, when, for the first time in history, orga- potential insights into mental and emotional disease. nized teams of clinicians had the opportunity to The contributions of neurophysiologists such as observe and treat large numbers of men with similar Charles Sherrington supported the concept of speci- injuries. Henry K. Beecher, a Harvard anesthesiolo- ficity: that “real” pain was a direct, one-to-one gist serving in Europe, was startled to realize that response to a specific harmful or noxious stimulus soldiers with serious wounds seemed to be in much (although Sherrington himself insisted that the central less pain than surgical patients recovering consciousness nervous system integrated neural response from the in the recovery room. The GIs were slow to request periphery). The corollary of specificity theory was morphine and often appeared quite relieved by a ciga- that individuals who reported pain in the absence rette. Beecher theorized that, whereas pain for the sur- of an evident cause were delusional, neurotically gical patient meant disruption of normal life and fears obsessed, or malingering (often the conclusion of mil- of serious illness, the soldier’s painful wound meant itary surgeons or those treating workmen’s compensa- his release from the battlefield to a hospital and tion cases): Their pain was “in the brain.” As John increased chance of survival. The human experience Homans wrote of causalgia-like disorders in The New of pain, he suggested, had to result from the fusion of England Journal of Medicine in 1940, “That there is a physical sensation and a cognitive and emotional something basically at fault about the nervous system “reaction component.” The assumptions of specificity of certain of the individuals affected, is probable. theory, based on laboratory experiments in which the Some...have grudges against the world, or are reaction component was relatively neutral, could not perhaps stupid, or even criminal.” be applied therefore to the understanding of clinical This disparaging attitude toward patients with pain. chronic pain persisted well into mid-century. A few At Madigan Army Hospital in Washington state, researchers and clinicians—the surgeons Rene the young anesthesiologist John Bonica participated Leriche and William Livingston, the neurologists in regular lunchtime discussions with colleagues—a Alfred Goldscheider and Rafael Lorentè de No, and neurologist, an orthopedist, and a psychiatrist—about the anesthesiologist Emery Rovenstine—proposed the difficult pain disorders they encountered. He left alternatives to specificity theory or attempted new army service with the conviction that interdisciplinary treatments before 1940. In the 1890s, Goldscheider collaboration in both clinical and basic research would Pain———1191 be essential to improving medical understanding of several African countries. The American Pain Society pain. Both Bonica and Livingston, who called the war (APS) was founded in 1977. In 2003, the IASP had years dealing with nerve injuries at Oakland Naval more than 6,700 members, representing more than Hospital “the most exciting and productive of my life,” 100 countries and 60 disciplinary fields. The next 30 founded multidisciplinary pain clinics at their home years saw much new research on the problem of pain, institutions in 1947. In 1953, Bonica brought together stimulated by the availability of a dedicated research much of the current state of knowledge in his magnum journal and by regular professional meetings and opus The Management of Pain. One of the important opportunities for interdisciplinary discussion between points made in this book, paralleling Beecher’s work, clinicians, neurophysiologists, biochemists, pharma- was that all clinical pain included both physiological cologists, molecular biologists, and psychologists. and psychological components. Two major findings have emerged from this The Dutch neurosurgeon Willem Noordenbos research. First, severe pain from an injury or other extended the theory of pain as an integration of multi- stimulus, if continued over some period, can alter the ple inputs into the nervous system in his short but neurochemistry of the central nervous system, creat- classic 1959 book, Pain. His model of a multisynaptic ing a sensitization of the central nervous system and afferent system was “an extremely complicated nerve significant neuronal changes that will endure after the net in which, within limits, everything synapses more initial stimulus is removed and that is perceived by the or less with everything else.” His ideas appealed to the individual as chronic pain. Gary Bennett and Xie Yu- Canadian psychologist Ronald Melzack (who had Kuan demonstrated this phenomenon dramatically at been Livingston’s fellow) and the British physiologist the National Institutes of Health (NIH) in 1989, using Patrick Wall, two self-described iconoclasts who a rat with a constricted sciatic nerve. In 2004, Min met at MIT in the late 1950s. They drew together Zhou and a team at Washington University in St. Louis Goldscheider’s, Livingston’s, and Noordenbos’s ideas identified two enzymes in the forebrain, adenylyl with the available research evidence, rethought the cyclase 1 and 8, that play an important role in central problem, and proposed the gate control model of pain sensitization. in their now iconic paper, “Pain Mechanisms,” in The second finding is that pain perception and 1965. Although the theory itself proved to be incor- response differ with gender and ethnicity and with rect, the implication that laboratory and clinical obser- learning and experience. Women appear to suffer pain vations together could demonstrate the physiological more often and with greater emotional stress than do basis of a complex neural integration mechanism for men, but some evidence shows that they may cope pain perception inspired and challenged a young gen- with severe pain more effectively. African Americans eration of researchers. show a higher vulnerability to chronic pain and a higher level of disability than do white patients. These THE PAIN FIELD observations are borne out by neurochemical research; for example, Jon Levine and Christine Miaskowski at Drawing on the upsurge of interest in pain generated UCSF found in the early 1990s that males and females by Wall and Melzack, John Bonica organized a meet- have differential analgesic responses to different types ing of 300 researchers and clinicians at an isolated of opioid drugs. convent in Issaquah, Washington. Under his leader- In another set of experiments at NIH in the late ship, this conference gave birth to an interdisciplinary 1990s, M. A. Ruda and her colleagues showed that organization, the International Association for the animals that experience pain when very young show Study of Pain (IASP), and a new journal edited by neuronal changes at the molecular level and appear Wall, Pain, marking the emergence of pain science as more sensitive and hyperesthetic as adults. The clear a professional field. National chapters of the associa- inference of these studies is that no two individuals tion have been organized throughout Europe and Latin experience pain the same way. The clinical observa- America; in Asia, Australia, and New Zealand; and in tions of Mitchell, Beecher, Livingston, and others are 1192———Pain thus borne out by research evidence. Pain is in the The search for pharmaceutical alternatives to the brain after all, but in a physiological as well as psycho- opiates has continued. Although many morphine deriv- logical sense. atives were isolated by the 1960s, none had been found that combine analgesic efficacy with a complete lack of addictive potential. Clinical observations in patients TREATMENT with depression meanwhile had demonstrated that Effective treatment of many chronic pain disorders the tricyclic antidepressants, such as amitriptyline and remains problematic. There are more options than imipramine, could relieve headache, postherpetic neu- in the early 1900s, when opiate drugs or disabling ralgia, and other types of persistent pain. More recent surgery were the only alternatives, but no one method research has suggested a number of new pharmacolog- seems to work in all cases. Morphine and its relatives, ical strategies to develop drugs that will block or inhibit including oxycodone, hydropmorphone, meperidine, specific steps in sensory, inflammatory, or sensitization propoxyphene, and codeine, remain the most consis- neural pathways: These include COX-2 inhibitors and tently effective analgesics known. Since the intro- N-methyl-D-aspartate (NMDA) antagonists. duction of the World Health Organization (WHO) Psychologists have developed alternatives to drugs analgesic ladder in 1986, an international group of for the treatment of chronic pain, based on learning pain specialists and policy advocates, led by Jan and behavioral theory. Soon after the publication of Stjernswärd, Mark Swerdlow, Robert Twycross, the gate control model, Richard Sternbach argued that Kathleen Foley, Vittorio Ventafridda, David Joranson, an individual’s perception of and response to pain and June Dahl, has campaigned for the removal of were learned from prior experience—and, by implica- legal and attitudinal barriers to opiate use in severe tion, could be relearned. In the early 1970s, the chronic, particularly cancer, pain. But many patients psychologist Wilbert Fordyce and his colleagues at and clinicians associate these drugs with an unaccept- the University of Washington developed a therapeutic able loss of mental clarity and control. Drug regulatory program based on operant conditioning, which helped authorities in most countries fear diversion to the crim- chronic pain sufferers to work their way back to inal market and restrict and discourage the prescrip- normal functioning by gradually increasing levels of tion of opiates. In the late 1990s, the diversion and illegal activity. This method has often proved successful but recreational use of Oxycontin, a slow-release formulation is expensive and requires significant time investment. specifically designed for use in chronic pain, prompted Cognitive-behavioral therapy, a related modality a new outburst of public and regulatory concern in the that emphasizes the teaching of self-management United States. skills, emphasizes the patient’s own agency. The Surgeons have progressively refined sympathec- individual who has learned to cope effectively with tomies and other techniques—ligature, resectioning, or his or her pain, using relaxation, distraction, and crushing of the nerve fibers—for blocking the trans- controlled exercise, is able to function better, may mission of pain signals to the spinal cord and brain suffer less from anxiety and depression, finds the since the 1870s, but in the 1920s, a few pioneers, pain less intensive and less disabling, and discovers including Leriche and Livingston, advocated the use ways to lead a productive life. Yet some observers of serial anesthetic blocks as a more humane therapy have criticized these learning-model programs for for intractable chronic pain. Livingston found that mul- shifting so much of the therapeutic responsibility to tiple injections of procaine, sometimes as many as eight the patient. over a period of two years or more, often ended the “vicious circle” and resulted in permanent remission. PAIN IN THE TWENTY-FIRST CENTURY These methods were refined by Rovenstine, Bonica, Swerdlow, and other anesthesiologists and became the As the twenty-first century begins, pain has increasing staple practice of pain clinics in the United States and salience as a scientific and health problem. In the late the United Kingdom in the 1950s. 1990s, the American Pain Society (APS) popularized Palliative Care———1193 the use of “Pain as the Fifth Vital Sign,” and a campaign Melzack, Ronald and Patrick D. Wall. 1965. “Pain Mechanisms: led by June Dahl prompted the Joint Commission for A New Theory.” Science 150:971–979. the Accreditation of Health Care Organizations Sternbach, Richard A. 1968. Pain: A Psychophysiological Analysis. New York: Academic Press. (JCAHCO) to include pain assessment as a required Turk, Dennis C., Donald Meichenbaum, and Myles Genest. 1983. standard. The U.S. Congress declared 2000–2010 the Pain and Behavioral Medicine: A Cognitive-Behavioral “Decade of Pain Control and Research” as a result of Perspective. New York: Guilford. strong advocacy by pain professional groups, such as the APS and American Academy of Pain Medicine, and Websites patient support groups, such as the American Chronic American Pain Society, www.ampainsoc.org Pain Association. The Pain Care Policy Act, reintroduced International Association for the Study of Pain, www.iasp-pain in 2005 as H. R. 1020, would establish a new National .org Center for Pain and Palliative Care Research at the John C. Liebeskind History of Pain Collection UCLA, The Relief of Pain and Suffering, www.library.ucla.edu/libraries/biomed/ National Institutes of Health and a national awareness his/painexhibit/index campaign within the Department of Health and Human Services. Yet most medical students still learn little about ᨘ PALLIATIVE CARE pain; many medical specialists, in fields such as car- diology, oncology, gynecology, and gastroenterology, The term palliative care describes an orientation to still pay relatively little attention to their patients’ the care of persons with life-limiting illness that pain, and despite its high prevalence and debilitating encompasses physical, social, psychological, and effects, there is no definitive and completely effective spiritual dimensions. It is closely associated with the treatment for chronic pain. development of hospice services and is a model of —Marcia L. Meldrum care that has operated beyond the narrow confines of the formal health care system to involve local com- See also Complementary and Alternative Medicine; End-of-Life munities, charitable and philanthropic giving, and the Care; Health Care and Disability; Palliative Care. efforts of volunteers. Palliative care services have con- siderable potential to serve the needs of people with Further Readings disabilities with advanced illness, although so far and Baszanger, Isabelle. 1998. Inventing Pain Medicine: From the in most cases, they have tended to focus on the care of Laboratory to the Clinic. New Brunswick, NJ: Rutgers those with malignant conditions, to the exclusion of University Press. those with other needs. Gawande, Atul. 2002. Complications: A Surgeon’s Notes on an Imperfect Science. New York: Holt. The World Health Organization (WHO) first Gracely, Richard H., Susan Lynch, and Gary J. Bennett. 1991. defined the term palliative care in 1989. The most “Painful Neuropathy: Altered Central Processing, Maintained recent definition of palliative care to appear from the Dynamically by Peripheral Inputs.” Pain 44:293–299. WHO, published in 2002, states that palliative care Greenhalgh, Susan. 2001. Under the Medical Gaze: Facts and is an approach that improves the quality of life of Fictions of Chronic Pain. Berkeley: University of California patients and their families facing the problems associ- Press. Jackson, Jean E. 2000. “Camp Pain”: Talking with Chronic Pain ated with life-threatening illness, through the pre- Patients. Philadelphia: University of Pennsylvania Press. vention and relief of suffering by means of early Livingston, William K. 1998. Pain and Suffering. Seattle, WA: identification and impeccable assessment and treat- IASP Press. ment of pain and other problems, physical, psychoso- Loeser, John D., Stephen H. Butler, C. Richard Chapman, and cial, and spiritual. Palliative care provides relief from Dennis C. Turk. 2001. Bonica’s Management of Pain, 4th pain and other distressing symptoms; affirms life and rev. ed. Philadelphia: Lippincott Williams & Wilkins. Meldrum, Marcia L. 2003. “A Capsule History of Pain regards dying as a normal process; intends neither to Management.” Journal of the American Medical Association hasten nor postpone death; integrates the psychological 290:2470–2475. and spiritual aspects of patient care; offers a support 1194———Palliative Care system to help patients live as actively as possible principles of hospice care could be practiced in many until death; offers a support system to help the family locations: in acute and oncologic hospitals, in home cope during the patient’s illness and in their own care and day care services, and through ambulatory, bereavement; uses a team approach to address the outpatient, and “drop-in” services. Such approaches needs of patients and their families, including bereave- brought the new thinking about dying into the very ment counseling, if indicated; will enhance quality of heartlands of acute medicine and into domiciliary and life and may also positively influence the course of long-term care settings. illness; and is applicable early in the course of illness, Professional recognition of this emerging area of in conjunction with other therapies that are intended expertise was necessary if the work was to spread and to prolong life, such as chemotherapy or radiation the influence of hospice philosophy was to go beyond therapy, and includes those investigations needed to the confines of the voluntary hospice movement. better understand and manage distressing clinical Some claimed that specialization, the integration of pal- complications. liative care into the mainstream health system, wider There is a global need for improved end-of-life care. “coverage” of services, and the development of an Around the world, more than 1 million people die each “evidence-based” model of practice and organization week. It is estimated that 60 percent of these could were crucial to long-term viability. Meanwhile, others benefit from some form of palliative care. Yet at the mourned the loss of early ideals and regretted an moment, only a tiny minority of dying people ever emphasis on physical symptoms at the expense of psy- receive the support of hospice and palliative care chosocial and spiritual concerns. During the 1990s, services. Palliative care is hugely underdeveloped in there were claims that forces of medicalization and most resource-poor countries, and it is still significantly routinization were at work and even that the putative constrained in many countries with otherwise “advanced” “holism” of palliative care philosophy masked a new, health care systems. There is a significant shortage of more subtle form of surveillance of the dying and political leaders and “product champions” with an inter- bereaved in modern society. est in palliative care and a dearth of national and inter- At the same time, two forces for expansion were also national policies to promote its development. The clearly visible. First was the impetus to move palliative creation of a trained multidisciplinary workforce to care further “upstream” in the disease progression and deliver clinical care, educational programs to support to make it available to those at earlier stages of a life- them, and an evidence base to highlight both unmet threatening illness, thereby seeking integration with need and the efficacy of existing provision are all addi- curative and rehabilitation therapies and shifting the tional challenges. It is estimated that hospice or pallia- focus beyond terminal care and the final stages of life. tive care services now exist or are under development on Second, there was a growing interest in extending the every continent of the world—in around 100 countries. benefits of palliative care to those with diseases other The total number of hospice or palliative care initiatives than cancer, to make “palliative care for all” a reality. So is in excess of 8,000, and these include inpatient units, far, there has been greater success in the first of these; hospital-based services, community-based teams, day palliative care has found its way into the curriculum of care centers, and other modes of delivery. health care professionals working in many settings, its The first attempt to develop a modern approach services are delivered alongside and sometimes closely to hospice and palliative care was led by Dr. Cicely integrated with mainstream provision, and the palliative Saunders at St. Christopher’s Hospice in South London, care “approach” is being fostered in many settings. Too which opened in 1967. Based initially around an inpa- often, however, access to specialist palliative care is tient unit, soon followed by a home care service, it also confined to those with a cancer diagnosis. delivered education programs and undertook research Health and social care staff working in palliative into the care of terminally ill people. From the outset, care require training in the particular needs of people ideas developed there were applied differently in other with disabilities in relation to advance health care settings. Within a decade, it was accepted that the planning, options for hospice and palliative care, and Panic Disorder———1195 special concerns in consenting to care. People with Clark, David and Jane Seymour. 1999. Reflections on Palliative disabilities, as well as their family members, compan- Care. Buckingham, UK: Open University Press. ions, and surrogates (where applicable), require infor- James, Nicky and David Field. 1992. “The Routinisation of Hospice.” Social Science and Medicine 34(12):1363–1375. mation and guidance on their rights to make informed Sepulveda, Cecilia, Amanda Marlin, Tokuo Yoshida, and Andreas health care decisions and on the availability of hos- Ullrich. 2002. “Palliative Care: The World Health Organi- pice and palliative care to manage pain and distressing sation’s Global Perspective.” Journal of Pain and Symptom symptoms, as well as psychosocial and spiritual dis- Management 24(2):91–96. tress in the context of advanced illness. Stein, Gary L. and Lucille Esralew. 2004. “Palliative Care for The lack of engagement between disability studies People with Disabilities.” In Living with Dying: A Social Work Textbook in End of Life Care, edited by J. Berzoff and and studies in palliative care is striking. Yet both fields P. Silverman. New York: Columbia University Press. reveal some of the properties of social movements. In their early decades, modern hospice and palliative Websites care services in the West were supported by wider International Observatory on End of Life Care, www.eolc-obser forces: consumerism and increasing calls for auton- vatory.net omy among the users of health and social care; demo- graphic trends, which created substantial numbers of individuals able to volunteer their labor in local hos- ᨘ PANIC DISORDER pices; and greater affluence, which led to an increase in charitable giving. This movement may well have Panic disorder (PD), a commonly observed mental contributed to a new openness about death and disorder affecting up to 3 percent of the general pop- bereavement that was in evidence in the late twentieth ulation, is one of the most disabling conditions among century (in Britain, for example, the first person ever the so-called common mental disorders. Approximately to be seen to die on television was in the care of a hos- 60 percent of people suffering from PD show a severe pice). Inspired by charismatic leadership, the hospice or moderate level of disability and reduced quality of movement condemned the neglect of the dying in life, with relevant difficulties in important areas such society, called for high-quality pain and symptom as work, social relationships, marital life, and leisure. management for all who needed it, sought to recon- Disability related to PD may be due to several factors. struct death as a natural phenomenon rather than a First, the nature of symptoms themselves can result clinical failure, and marshaled practical and moral in overwhelming anxiety that impairs functioning, as arguments to oppose those in favor of euthanasia. can the fear of recurrent attacks and the presence of Hospice care and palliative care have a shared and “anticipatory anxiety” (i.e., the anxiety related to the brief history. The evolution of one into the other expectation of a new attack). Second, the frequency of marks a transition that, if successful, could ensure that “comorbidity” with other disabling anxiety or depres- the benefits of a model of care previously available to sive disorders, particularly agoraphobia, complicates just a few people at the end of life will in time be up to two-thirds of PD cases. Agoraphobia is charac- extended to all who need it, regardless of diagnosis, terized by anxiety about being in places or situations stage of disease, social situation, or means. from which escape might be difficult or embarrassing (i.e., open or restricted spaces, crowded places, trav- —David Clark and elling in a bus, etc.) and by avoidance of such situa- Carol Thomas tions, with a consequent, often marked, restriction See also Death; End-of-Life Care; Pain. in lifestyle of people affected. Major depression is a frequent consequence of untreated panic disorder, Further Readings and this adds to the symptom picture and adds Clark, David. 2002. “Between Hope and Acceptance: The considerable social-occupational disability. Finally, Medicalisation of Dying.” British Medical Journal the chronic or recurrent nature of the disorder (up 324:905–907. to 70–80 percent of cases) often leads to suicide 1196———Paralympics attempts and to reduced self-esteem, which compounds Mandeville, England. In 1948, he organized a sports the disability. competition for athletes with disabilities, and with the gradual inclusion of other countries into these compe- —Bernardo Carpiniello titions, the Paralympic movement began. Olympic-style See also Mental Illness. games for athletes with disabilities were organized for the first time in Rome in 1960. A number of different Further Readings disability groups were merged in competition in 1976, Carpiniello, Bernardo, Baita Antonella, Carta Mauro Giovanni, and in the same year, the first Paralympic Winter R. Sitzia, A. M. Macciardi, S. Murgia, and A. C. Altamura. Games took place. The number of participating ath- 2002. “Clinical and Psychosocial Outcome of Patients letes has consistently increased at every event since. Affected by Panic Disorder with or without Agoraphobia: The Paralympic Games are multidisability, multi- European Results from a Naturalistic Follow-Up Study.” sport competitions and have become the second Psychiatry 17:394–398. largest sporting event in the world, only after the Olympic Games. The Paralympic Games have always ᨘ been held in the same year as the Olympic Games, PARALYMPICS and since the Seoul Games (summer, 1988) and the Albertville Winter Games (1992), they have also taken The Paralympic Games or the Paralympics are the place at the same venues. In 2001, an agreement was international multisport competitions for athletes with signed between International Olympic Committee and disabilities, which take place every two years, alternat- the IPC under which the city chosen to host the Olympic ing between summer and winter sports. Roughly 4,000 Games will also host the Paralympics. The Italian city athletes from around 140 countries compete in approx- of Turin will host the 2006 Olympic and Paralympic imately 20 sports in the summer Paralympics, while Winter Games, and in the summer of 2008, both the roughly 500 athletes from around 40 countries compete Olympics and Paralympics will be held in Beijing. in approximately four sports in the winter Paralympics. The word Paralympic was originally a pun combin- The Paralympic movement is a term that refers to the ing paraplegic and Olympic, but with the inclusion of collective parties who contribute to the worldwide other disability groups and the close associations with development of sports for persons with a disability, the Olympic movement, it now relates to parallel and from developmental to the elite sport level. Historically, Olympic, to illustrate how the two movements exist the idea stems from the use of sports for rehabilitation, side by side. Most sports at the Paralympic Games are but due to the increased participation and recognition of the equivalent to the Olympic sports, but four sports sports for persons with disabilities, the Paralympics and are unique to the Paralympic Games (boccia, goalball, the Paralympic movement now play a vital role in facil- powerlifting, and wheelchair rugby). For current itating sporting opportunities for all persons with dis- information about the Paralympic sports (summer and abilities and contribute to changing societal attitudes winter), please visit the International Paralympic and perceptions of individuals with disabilities. In the Committee (IPC) website at www.paralympic.org. past 50 years, this movement has seen a significant To create a level playing field, Paralympic athletes increase, and today, thousands of athletes participate in are classified into one of six disability groups. The six more than 300 international competitions every year. disability groups are amputee, cerebral palsy, intellec- tual disability, visually impaired, spinal injury, and les HISTORY OF THE autres (conditions that do not fit into the traditional clas- PARALYMPIC MOVEMENT sification system). In some sports, athletes compete in a class according to functional ability, for example, in In 1944, Sir Ludwig Guttmann promoted sport as a Swimming. This means that an athlete who uses a form of recreation and rehabilitation therapy for World wheelchair for mobility may compete not only against War II veterans with spinal cord injuries in Stoke other wheelchair athletes but also against amputees or Paralysis———1197 those with cerebral palsy, if they have the same or simi- achieve its mission: “To Enable Paralympic Athletes lar functional ability. In Athletics, however, classification to Achieve Sporting Excellence and Inspire and is disability specific. This means that the disability Excite the World.” groups only compete against other athletes with the Until 2005, the IPC was composed of the General same disability, for example, amputees against amputees. Assembly (its highest decision-making body); the As athletic opportunities have expanded and Executive Committee; the Management Committee; sport for persons with disabilities has matured, so have the Headquarters in Bonn, Germany; and the various the number of participants at all levels of competition standing committees and commissions. In 2005, the and the individual accomplishments of athletes with IPC underwent some structural changes; the Executive disabilities. Outstanding performances by athletes at Committee was replaced by a Governing Board, and Paralympic events are often only slightly behind those all members of the Governing Board are now directly of able-bodied athletes and constantly improving. elected by the General Assembly. There are four advi- sory councils in addition to several standing commit- THE INTERNATIONAL tees and commissions. They are governed under a new PARALYMPIC COMMITTEE IPC constitution and a new electoral system. This will lead the 13 IPC sports toward more self-sustainability The IPC is the international representative organization and eventually independence from the IPC. In addition of sport for athletes with disabilities. It supervises and to the NPCs and IOSDs, the sports and regional bodies coordinates the Paralympic Games and other multidis- will also become full members of the IPC. It is hoped ability competitions such as the World and Regional that these changes will allow the IPC to lead the Championships as well as developing sporting opportu- Paralympic movement more effectively and consis- nities around the world for athletes of all levels. tently in the future. The IPC was founded on September 22, 1989, as an —Miriam Wilkens international, nonprofit organization formed and run by around 160 National Paralympic Committees See also Classification in Paralympic Sport; Physical Activity; (NPCs) and 5 disability-specific international sports Recreation; Sports and Disability; Sydney Paralympics. federations (IOSDs). The organization has a democra- tic constitution and structure, made up of elected rep- Further Readings resentatives. The current president of the IPC is Phil Joukowsky, Artemis A. W. and Larry Rothstein. 2002. Raising the Craven, a former Paralympian and former president of Bar: New Horizon in Disability Sports. New York: Umbrage. the International Wheelchair Basketball Federation. Scruton, Joan. 1998. Stoke Mandeville: Road to the Paralympics. The IPC has a number of objectives and functions. Aylsbury, England: Peterhouse Press. Sydney Olympic Organizing Committee. 2000. Mind, Body, Overall, the IPC aims to promote, without discrimina- Spirit: Sydney 2000 Paralympic Games Official Souvenir tion, the practice of sports for people with disabilities Book. Victoria, Australia: News Custom Publishing. and to seek the expansion of sport opportunities for people with disabilities from a developmental to an Websites elite level. To achieve these aims, the organization The ATHENS 2004 Olympic and Paralympic Games, must coordinate the calendar of international and www.athens2004.com regional competitions, liaise with the IOC and other The International Paralympic Committee (IPC), www.paral international sports bodies, and develop and encour- ympic.org age educational programs, research, and promotional activities. The IPC also currently serves as the Inter- national Sports Federation for 13 of the 26 sports. ᨘ PARALYSIS Other sports are either governed by independent sport federations or are part of a disability-specific IOSD Paralysis, the relative absence of intentional move- program. All of these activities allow the IPC to ment of a part of or the whole body, has an impact on 1198———Paralysis the social order. As Harold Garfinkel teaches, the These caretakers are isolated within their family and entire social world, including the built environment, is suffer from the absence of psychological help and based on an upright, bipedal, mobile body, with eyes physical help. in the front of the skull. Garfinkel illustrated this to his students by taking them to Rancho los Amigos, a hos- pital specializing in the rehabilitation of patients with CONVERSATION AND GAZE spinal cord injuries. The objective was to learn the changed spatial perspective of the patients. General Properties of Being Voiceless There are many causative conditions leading to Paralysis of the voice and sound-making muscles paralysis. Among these conditions are stroke, spinal radically distances the subject from participating in cord injury, a wide variety of congenital and neuro- the social world. The paralyzed subject cannot solicit pathic conditions and diseases, brain injury, and a host and maintain the attention of others by making of other causes. sounds. Since the majority of social institutions are Paralysis is highly variable. Some people have a accomplished by speech, the paralyzed subject is rou- contracture in the shoulder and cannot move an arm. tinely left out of these collaborative enterprises (e.g., Others may suffer arthritis in the hip and cannot use a conversations, parties, family, medical care, employ- leg. Still others suffer from systematic neurological ment, organizations, friendships, banking and invest- disease or injury and are totally dependent on others ment, and a host other everyday routines). for movement, eating, toileting, cleaning, communi- Here are some examples. In the daily flow of cating, and, in some cases, breathing. For the most domestic activity in a house or apartment, the body part, those who are totally dependent on others are the without a voice quickly gets routinized as an object focus of this entry, which details the social impact of with no social reference. No one informs the body living within a paralyzed body. First, conversation and without a voice what is going on in the other parts of gaze will be topicalized. Second, lack of mobility will the dwelling and what people are doing. People will be discussed. Finally, the hope of practical sociology pass by, their eyes averted, and not address the voice- will be elaborated on behalf of paralyzed subjects. less. Questions about activities in the house, commu- This entry focuses on the interactional difficulties nicated by alternative means, are treated as pesky and that have devastating economic consequences for are not answered. The subject without a voice soon totally and dependent paralyzed people. Most depen- comes to see himself or herself as treated like a piece dent paralyzed people lose their jobs and company or of furniture. institutional medical insurance. The income stream Not only is the paralyzed subject removed from the plummets. People have to sell their homes and draw ongoing interaction in the house, but the voiceless is down their financial assets. Then, they move to apart- subject to actions that are determined by others and ments, often publicly assisted, and change to public not sanctioned by the voiceless. The voiceless subject medical insurance. These apartments are far from will be moved, told “you are crooked,” and then family support and lead to a sense of isolation and quickly and sometimes violently moved into the care- acute depression. taker’s perceived appropriate position. This will hap- Families of dependent paralyzed subjects, who pen regardless of whether the voiceless subject is suffer the evaporation of financial resources, are comfortable. extremely fragile in the United States. There is a fre- The caretaker(s) will frequently substitute their quent expression of resentment and cruelty toward own judgment for that of the voiceless subject. The paralyzed subjects. Some family members deal with subject will be told he or she is fine and in no need of their feelings by ignoring the subject, even when the action, when in fact the subject is in immediate need subject requests assistance. Some declare ignorance of action. The words “you are fine” are often uttered as an excuse for not assisting in the care of paralyzed in the face of an apparent request for action. subjects. The care often falls on the parent or spouse. Substitution of judgment can take many permutations, Paralysis———1199 with people speaking and acting for the paralyzed with others. The work is often computer based. subject without permission. The result is a decrease in Subjects with spinal cord injuries who can talk are the subject’s autonomy. able to do most of this work. Spinal cord injuries, If the subject demonstrates any displeasure with the especially at a lower level in the spine, do not affect failure to take proper action, such as getting red in the the ability to carry on conversations. Those who suf- face or shaking the few working muscles, the care- fer from neurological diseases or conditions that more taker will often infantilize the protest. The subject will generally affect movement in the body, including be told, “You are not being a good boy.” Caretakers speech production, face a predicament in the informa- will collaborate in characterizing the subject as “not a tion business. They cannot enter into conversations, good boy” in endless rounds of conversation. produce utterances, or verbally acknowledge what Adverse characterizations of the subject or patient they are told. are frequent in caretaking but routinely overlooked. Conversation is a series of sequentially arrayed Caretakers’ utterances of phrases such as “you would turns at talk. The turns are temporally tight, meaning be better off dead” or “death will be a gift” are not there is no gap between them. The lack of a gap is a infrequent. Subjects’ wives, husbands, children, and mutually read indication that each speaker is refer- extended family members are not immune from get- ring to the last turn or a formulated previous turn. The ting involved with the talk of death, uttering phrases pace of natural conversation presents a huge problem such as “why don’t you just die!” for those who rely on computer-assisted speech and This kind of talk and reflexive attitude can infre- the few who use lipreading as their form of commu- quently lead to violence against and even the death of nication. Most people see computer-assisted, syn- the paralyzed subject. Violence is usually written off thesized speech as a panacea for people with damaged as a result of stress, and there is certain stress within speaking abilities. First, the person cannot type the family of the paralyzed subject. However, the fast enough to keep up with the pace of conversa- focus on stress misses the widespread ambiance of the tional turn taking, with the exception of “yes” or rhetoric of resentment, burdenship, and anger. Beyond “no.” Any elaborate response cannot be formulated the family and friends, this rhetoric of denunciation quickly enough to be designed to the previous turn and violence seems widespread in general American at talk. culture. Some suggest that responses to verbal exchanges can be designed in advance. But stock answers do not respond to the particular verbal formulation of a ques- Conversation tioner. Stock replies do not have built-in recipient Sometimes, conversations are essential and cannot design: The formulator of a question or a turn in con- be avoided. If the paralyzed subject is lucky enough to versation can easily anticipate the next turn at speak- be employed, most often in his or her preparalyzed ing, an answer built specifically to the previous turn position, the work product is produced by communi- at speaking, or to the inquiry. Preformulated turns at cation. Those who use the strength of their bodies are talk cannot adapt to the particular words used and to disqualified from employment as soon as they become the specific setting of a verbal exchange. These pre- paralyzed. Truck drivers, construction workers, repair- designed turns at talk feel like heavy weights, encum- men, waiters, professional athletes, restaurant cooks, bering natural conversation. and others are out of luck if they become paralyzed. The ability to type is variously affected by paraly- Only knowledge workers can continue to be employed sis. Some have full use of their arms and hands and after paralysis. can type as quickly as they are able. Such individuals Knowledge workers, or those who are not have fewer problems keeping up with the pace and employed in positions of physical labor, produce and reference of a conversation. Others, including those distribute knowledge. Such work requires attending who have neurological diseases or brain injuries, have meetings and engaging in conversational interaction more impaired arm and hand-finger movement. 1200———Paralysis

Typing may be limited to a single finger input, to a MOBILITY scanning of words or letters. An orally held stick that is pushed onto letters on a keyboard may Paralysis is a big problem in a world constructed on be used as a typing device. Head movement can be mobility: in houses, offices, educational institutions, used to input letters; blinking of the eyelids can be markets, planes, trains, motor vehicles, and social used to input letters. There is a growing amount of relations. As mentioned earlier, the whole constructed technology that comes to the communicative aid of world is based on an upright postured and bipedal paralyzed people. individual. Paralyzed subjects face a deficit in this Still, despite these advances in technology, alterna- world. tive computer input devices are painstakingly slow The paralyzed subject in a wheelchair, as well as and cannot keep up with the pace of natural conversa- his or her caretakers, becomes cognizant of every sur- tion. These devices, as cleverly engineered as they are, face feature—for example, sand, grass, up and down are frustrating to use because the conversational pace hill angles, steps, rugs, step-downs and step-ups, moves so quickly: By the time the computer speaks, uneven sidewalks, ice and snow, oil, curbs, edges of the interlocutors have lost the specific turn at talk, and sidewalks, and other terrain. All of these details con- the reference of the comment is tapped out by an alter- stitute hazards to safe wheelchair transportation. native device. Nearly every wheelchair occupant has experienced Finally, there are those paralytics who rely on being dumped out of the chair, landing violently on lipreading to communicate. Lipreading is not fast but the concrete. offers the maintenance of mutual gaze between con- Just as automobile drivers are of varying quality, versationalists and the expression of facial gestures, wheelchair pushers are spread out along the quality intensifying the communication and slowing down the continuum. There are some pushers who regularly go transition to the next turn at talk. Lipreading requires over curbs and sidewalks, letting the wheelchair turn a lip-signer and a lip-reader, a person who assembles over. Others appear to have a spatial perception prob- words or letters into sentences and then speaks the lem, regularly driving the paralyzed subject’s knees sentences on behalf of the lip-signer. This person is and feet into walls and tables. usually called a translator and is a side participant Often, those who push wheelchairs lack the in the ongoing conversation. The translator can often American middle-class sense of personal responsibility connect the paralyzed subject’s slowly formulated and may repeatedly push the paralyzed subject’s knees turn at talk to a previous turn at talk, to which the par- into solid objects. Wheelchair pushing often becomes alyzed subject designed his or her response. The role an instrument of cultural and class differences. of an effective translator is difficult because the trans- Because the paralyzed subject cannot move, trans- lator has to keep track of the ongoing conversation fers are another area of danger for the subject and and translate what the paralyzed subject wants to say those who perform the transfer. The sites where trans- at the same time. fers commonly take place are from wheelchairs to Translators can be great facilitators of communica- bed, from wheelchairs to the shower and toilet, and tion, but it is also possible for translators to interfere from wheelchairs to easy chairs. Paralyzed subjects with what the paralyzed subject intends to say. Once frequently are dropped, and those facilitating the the translator becomes familiar with the subject’s transfers hurt their backs and joints. Fortunately, there thought patterns, phrases, and vocabulary, the transla- are mechanical lifts that help those who perform trans- tor can and often does answer inquiries posed to the fers to avoid the danger of injury. However, not all subject without getting input directly from the subject. people can afford mechanical lifts. This often leads to charges leveled by the subject that Difficulty in movement contracts the spatial and translators are speaking for him or her, saying things social world. Previous routines of shopping, going to not intended. Control of communication is a continu- the bookstore, seeing a movie, going on vacation, and ing issue for paralyzed subjects. going to parties, barbecues, supermarkets, and meetings Parental Advocacy———1201 are seen as gigantic achievements. As such, they are such as hunting or operating a small sailboat. avoided personally and perceived as an avoidable Paralyzed subjects notice how directed gaze is to the drain on caretakers. Despite this trend to avoid the task at hand. They experience repeated frustration above social situations, the paralyzed subject may with signaling and maintaining mutual gaze. They desire to go to parties, for example. However, invita- attempt to set a behavioral code, such as the violent tions are few, and when they come, they have the shaking of the head, as a solicitation for mutual gaze. caveat, “I have steep steps to get into my house.” However, this code is frequently overridden by emerg- Nevertheless, there are certainly enjoyable occasions ing circumstances. The code is practically useless. at wheelchair-accessible houses and at hotels. But for The situational opportunity for paralyzed subjects the most part, there is a perceivable decline in invita- to develop into practical sociologists provides some tions to social events. If the paralyzed subject had hope and an instrumental sense of life. From observa- been a partygoer before, a feeling that one’s social life tion and memory, they can anticipate problem settings has collapsed is inevitable. and instruct their primary caregivers to ensure suc- The cure for feeling isolated and estranged from cessful participation. They can also communicate social life is to open one’s home to parties and family what not to do. These “not to do’s” have to be com- social gatherings. Assuming the house has been modi- municated neutrally and in a gingerly fashion, avoid- fied to the requirements of a disabled, paralyzed ing any sense of personal attack. person, it is a wonderful place to enjoy the fruits of Although not every paralyzed subject has the social gatherings. However, remodeling houses for the patience and sense of a growing base of knowledge, disabled takes significant amounts of money. Few par- practical sociology is the best way to avoid and alyzed subjects have access to these financial resources. repair most of the dire circumstances described here. Practical sociology does not require formal educa- PRACTICAL SOCIOLOGY tion in sociology, but it assumes a contemplative attitude. However, paralysis is often the harbinger of Paralyzed subjects are great practical sociologists. They contemplation. quietly and repeatedly observe the everyday routines of —Albert B. Robillard their households and of the individuals who are their caregivers. They are absorbed by these routines and See also Disability Management; Health; Mobility Aids. family activities because they can interfere with getting attention. It takes attention and regard to participate in Further Readings social settings. Getting this attention and participation Garfinkel, Harold. 1973. “Embodiement.” Unpublished lecture, is often problematic for paralyzed subjects. University of California, Los Angeles. Most paralyzed subjects did not realize before Robillard, Albert B. 1999. Meaning of a Disability: The Lived paralysis how much household activity is repeated in Experience of Paralysis. Philadelphia: Temple University the same way, even institutionalized. This includes the Press. ———. 2004. “Observation of a MDA Support Group for routines of going to the toilet, preparing and eating Paralyzed Subjects’ Caregivers.” Unpublished manuscript, food, reading the daily newspaper, cleaning rooms, University of Hawaii. going to bed and waking up, and the various tolerable ten Have, Paul. 1999. Doing Conversation Analysis: A Practical limits in being called by the subject. There are certain Guide. London: Sage. times that are off limits, when the subject cannot call a caregiver, such as sleeping, no matter how many hours, and eating, showering, toileting, and free time. ᨘ PARENTAL ADVOCACY Even gaze patterns are socialized. For most people, gaze is embedded in the project at hand because An advocate is defined as “one that pleads in another’s people have limited peripheral vision. Peripheral behalf” and is often compared to a lawyer (American vision is developed through circumstantial training, Heritage Dictionary of the English Language 1992). 1202———Parental Advocacy

In the case of parental advocacy for children with PARENTAL ADVOCACY NEEDS disabilities or special needs, the advocate is often respon- sible for pleading on behalf of a child from multiple For any advocate to plead one’s case, he or she needs perspectives. A traditional perspective would assume information. This applies to parents of children with that the parent is responsible for “pleading on behalf” special needs in a broad variety of arenas. We com- of the child in tandem with professional therapist(s) piled the following list of some types of information (e.g., the assumption being that there is only one per- required by parents to be effective advocates for their spective to consider, that of the child’s success and own child and family: “cure”). Current approaches through the field of dis- ability studies allow for the incorporation of multiple Disability-specific information (the ability for parents perspectives on a “cause.” By promoting parental advo- to get such information will vary dramatically based cacy, we can ensure that perspectives on the individual on their child’s identified special needs, as well as the as a child, a family member, and a student or learner, as age of the child. In some cases, diagnoses of children well as a person with a disability, are respected. will not be made until the grade school level, if at all, The treatment of children with disabilities has making appropriate information-seeking difficult if long been an issue requiring parental advocacy but has not impossible.) only recently been legitimized through public policies Knowledge of public policies and the child and relevant to education and quality of life. Reading family’s legal rights, as well as the changes with age historical documents serves as a reminder of just how (Section 504 or the Rehabilitation Act; the Individuals recently individuals with disabilities were stigmatized, with Disabilities Education Act [IDEA] and its com- and significant assumptions were made regarding ponents, including Individualized Educational Programs future capabilities and life trajectories, based on initial [IEPs]; Least Restrictive Environment; the Family status at birth or diagnosis at a young age. Parents were Education and Privacy Act [FERPA]; most recently, often encouraged to “give up” on their young children the No Child Left Behind Act [NCLBA] and its impli- with disabilities and to “cut their losses” by institu- cations for special education students; and potentially tionalizing children. A growing realization on the part many other relevant policies dependent on the child’s of both parents and educators that such programs often disability) were not in the best interests of the child and family has resulted in legislation that guarantees a “free and School district–specific information (within the legal appropriate” education “in the least restrictive environ- parameters of the policies mentioned above, what are the ment” to children age three and above and encourages offerings of the family’s home school district? What is states to identify high-risk children and children with the range of possible placements? How do they change disabilities from ages zero to three as well. from pre-K to primary to middle and high school? How The growing fields of disability studies, special does the school district deal with behavioral or discipline education, and child development/developmental psy- issues for children with IEPs? How are children made chopathology have all begun the process of research- eligible for special services within the district? How are ing how one determines the best educational programs school year programs extended through the summer to for children across a wide range of developmental provide continuity? How are school or program transi- concerns and disabilities, but there is much work to be tions handled within the district? What types of assistive done in documenting which programs work for whom technologies are available?) and how different programs meet the specific con- cerns of children and their families in terms of both Statewide policies (statewide assessment, qualifications educational and functional success. Within this cultural for state funding and special education initiatives) context (a relatively new area of study, with limited data on program success), what is the best way for “Out-of-the-box” information—Many types of parents to advocate for children and families? “suggested” programs for children with special needs Parental Advocacy———1203

(particular types of massage, yoga, or physical involved in the process is essential for developing a therapy for motor-related disabilities or regulation good educational program. The importance of collab- disorders; particular listening therapies for sensory or oration on the part of parents and professionals, as auditory processing disorders; etc.), as well as general well as key advocacy roles for both groups, cannot be programs of enrichment (music, fine arts, etc.), may overemphasized. be useful. Parents need information both about offer- ings of these programs, as well as data on effectiveness/ actual effectiveness, and whether any data are WHEN ARE PARENTAL available. ADVOCACY EFFORTS NEEDED? Although parenting and advocating for a child is an “Impact” and networking information—Finally, ongoing process, there are certain distinct times when parents often find it useful to know about supportive particularly intense efforts are needed. For example, services and resources in their own community (e.g., two such times are (1) the period during which identi- parent support networks) and more nationally (infor- fication or “diagnosis” of a child’s special needs mational websites or chat groups). occurs and (2) the yearly review or IEP meetings that document a child’s educational progress and form As should be obvious from above, there is an over- plans and goals for the coming educational year. In whelming amount of information required to be an addition to these two times, there is the ongoing super- effective parental advocate for a child with special vision of the child’s program, in terms of both meeting needs. Making the job even harder are some of the the child’s educational and experiential goals, as well emotional issues regarding parental advocacy. Most as the effect of the program on the child and family. parents did not expect to be raising a child with special needs, and there is a significant adjustment period required to cope with discovery of the child’s needs. IDENTIFICATION OR DIAGNOSIS When one seeks information or services for a child with special needs, one suddenly enters a world of experts, In some cases, identification of special needs occurs at from varying disciplines, with much jargon. Many or prior to birth. In other cases, there is a growing real- parents are afraid of asking the “experts” questions, ization either on the part of the parent or in an initial either because of potential reprisal (perhaps the district preschool or primary school experience that some- or private professionals will not treat my child nicely if thing is just “not right.” Many parents discuss having I am seen as a “difficult” parent) or due to discomfort gnawing levels of concern regarding specific behav- with feeling or being perceived as “stupid.” Through iors, only to be reassured by pediatricians or other parent information and support groups established medical specialists. This is in part due to the very throughout the country and funded by the federal gov- broad range of behavior in early development, which ernment, parents are learning how to share information makes more subtle variations that may be indicative of about their child with special needs, ask questions of special needs harder to detect. Most special educators, professionals and school personnel, and bring relevant parents, and textbooks dealing with this issue recom- and important information about their child to the table. mend that in a “gray” instance, primary care profes- Parents play a key role in providing information sionals refer parents to early intervention specialists about the child’s abilities, strengths and weaknesses, who can conduct evaluations and either reassure and interests. They have a unique expertise with parents or provide needed services. regard to their own child and his or her role in their It is also the case that the reverse can happen— family. Parental insights complement information professionals at school or medical professionals can obtained by the school or the service provider and notice possible areas of developmental delay or learn- provide a broader picture of the child’s capabilities ing differences and raise concerns to parents who have and needs. Identifying specific ways for parents to be not yet been concerned (anecdotally, many parents of 1204———Parental Advocacy firstborn children with special needs mention this and questions and getting accurate information. In addition, state they had no “barometer” on which to judge their websites and information centers provide detailed child’s differences). checklists for preparation for IEP meetings, as well as Once a developmental delay or other learning or reinforcing particular aspects of the family’s rights social, emotional, or behavioral issue has been identi- (e.g., timing of information and receipt of reports, fied, parents are likely to be provided with a referral for ability of parents to attend a meeting but withhold sig- evaluation. Key components of the parents’ job at this nature until all information is satisfactorily available point are twofold: (1) coordinating all needed evalua- for the child’s program, etc.). tions and (2) providing accurate and complete informa- In summary, this entry merely scratches the surface tion as part of the evaluation process. In general, for key factors underlying the necessity of parental gathering reliable data from children can be difficult; advocacy in forming appropriate educational and quality- this is true for typically developing children and even of-life goals for children with disabilities. Key needs of more so for children with special needs. Indeed, the parents for information and support are discussed, as more profound the special need, the more potential for well as key times when parental advocacy efforts may misinterpretation of child behavior and communication be most important. An additional critical factor to be attempts. This makes the parents’ role as “data provider” considered is the importance of advocacy and collabo- all the more essential. A good evaluation should include ration from other sources, such as the school and the a parent interview both regarding the child’s general community. A critical factor in future efforts should be abilities (birth history, meeting of developmental mile- the collection of evaluative data, both by individual and stones, etc.) as well as a sense from the parent of just group methods, to ensure that we are all advocating for how typical the child’s behavior has been during the the best possible start for our children. evaluation and whether the child has demonstrated his —Roberta L. Paikoff, Marian Casey, and or her true abilities, knowledge, and learning styles. Rhonda Wodlinger-Cohen

YEARLY REVIEW/IEP MEETINGS See also Advocacy; Childhood, Youth, and Adolescence; Family; Individualized Education Plan (IEP); Parenting; Special Once a child is “in the system” (e.g., has received a Education. detailed evaluation and been determined eligible for Further Readings services), an initial IEP meeting will be held to create Agin, M., L. Geng, and M. J. Nicholl. 2003. The Late Talker: What the child’s program for the current or coming school to Do If Your Child Isn’t Talking Yet. New York: St. Martin’s. year. In subsequent years, annual reviews and/or IEP American Heritage Dictionary of the English Language, 3d ed. meetings will be held to document progress toward 1992. New York: Houghton Mifflin. educational goals and to form plans for the coming Shonkoff, J. P. and S. J. Meisels. 2000. Handbook of Early year. Parents must be notified about this meeting and Childhood Intervention, 2nd ed. New York: Cambridge may make plans to attend along with any key individ- University Press. Turnbull, A. and R. Turnbull. 2001. Families, Professionals, and ual or individuals they would like to bring. Exceptionality: Collaborating for Empowerment, 4th ed. For most parents, IEP meetings are among the most Upper Saddle River, NJ: Prentice Hall. stressful places they find they must advocate for their Turnbull, H. R. and A. P. Turnbull. 1985. Parents Speak Out: Then child. Anecdotally, many parents cite as particularly and Now, 2nd ed. Columbus, OH: Bell & Howell. stressful the “litany” of data about their child and the Wright, P. D. and P. W. D. Wright. 2004. From Emotions to Advocacy: The Special Education Survival Guide, technical format, focused primarily on weaknesses 2d ed. Harfield, VA: Harbor House Law Press. rather than strengths, given that the purpose of the meeting is to define need for services. Many parent Websites information centers offer training on preparing for a Beach Center on Disability, www.beachcenter.org meeting, particularly on the art of representing your Parent Advocacy Coalition for Educational Rights, www.pacer.org child and family, as well as the importance of asking Wrightslaw, www.wrightslaw.com Parental Narratives———1205

ᨘ PARENTAL NARRATIVES toward exploring broader social or philosophical issues. Kenzaburo Oe’s (1995) A Healing Family and Mrs. Merrick explained that the appearance of her Michael Bérubé’s (1996) Life as We Know It are two son, known as “The Elephant Man,” was the result recent exemplars of this approach. All these categories of her being frightened at a Victorian circus; Carry share the underlying impulse to say what others cannot Nation explained that her husband’s drinking led or will not about disability and its effect on family life. to their daughter’s many health problems; Michael Such testimonies are not universally embraced. Bérubé explained that his son’s Down syndrome was They are dismissed as unreliable evidence or, at best, determined by the random replication of chromo- anecdotal, imprecise, and self-serving documents. somes at his conception. In all eras, parents of children The ethical problem of consent is raised: Is the dis- with disabilities have explained. They have written abled child capable of giving informed consent for and spoken their explanations as parental narratives, a very personal details of her or his life to be revealed in genre somewhere between autobiography and biogra- print? And if so, is the parent’s role too powerful, the phy, between memoir and witness. It is an enduring relationship too emotionally fraught, to allow that genre, often sharing shelves with adoption stories, consent to be given freely? Other critics fear that such mourning parent stories, and other vernacular efforts narratives will be taken as sufficient substitutes for to recall the process of loving a child through unusual firsthand accounts of disability. Still others find that, or difficult circumstances. by the time a parent is ready to write a memoir, his or Several categories of parent narratives of disability her advice may no longer be useful to a new genera- can be identified. Inspirational or sentimental narra- tion of parents encountering a much-changed land- tives are generally upbeat, intended to comfort and scape of laws, programs, and social attitudes. encourage others, especially other parents but also a Others, however, see parent narratives of disability more general readership, which may account for the as serving an array of useful functions. As Rapp and frequent success of such books. A classic in the cate- Ginsberg (2001:543) point out, because “the knowl- gory, Dale Evans Rogers’s Angel Unaware, published edge of what is entailed in caring for such children in 1950, was a best-seller for years; its frankly reli- remains absent from the mainstream discourse, under- gious tone can strike many readers today as heavy- scoring a sense of social segregation or stigma,” handed, but the book’s ultimate message—that Robin parental narratives may bridge a destructive gap in Rogers’s short life was worthwhile, her presence in common awareness. Parental narratives written in or the home a joy to her parents—countered medical recalling earlier times may work as a record of past advice and even other parents’ more tragic construc- conditions, valuable to historians but also to policy- tions of disability in mid-twentieth-century America. makers seeking models or measuring change. Parents The latter category, the parent confessional or patho- themselves often report that the writings of other graphical narrative, is personal to the same degree as parents are more accessible, supportive, and relevant sentimental narratives but with the intent of warning to their day-to-day decision making and coping than other families and sharing grief. Heartbreaking other formats, and parental narratives have histori- accounts of learning the child’s “hopeless” diagnosis cally encouraged, or even (in the case of Angel are characteristic of this genre, for example, in Pearl Unaware) directly funded, parent advocacy on behalf Buck’s The Child Who Never Grew (1950) or Michael of social inclusion and community-based programs. Dorris’s The Broken Cord (1989). Other parents take As parental narratives are often (but not always) writ- a more practical how-to approach to their story, ten in the context of developmental disability, they attempting a more neutral voice as they pass along may add to a literature otherwise short on vernacular advice to a readership of new parents. Charles R. accounts. Callanan’s Since Owen, from 1990, is among these The parental narrative literature is well developed works. Finally, more and more, some parents use their in the United States and seems to continue growing: experience with a disabled child as a springboard In 2002 alone, at least a dozen new parental narratives 1206———Parenting were published by American presses. Furthermore, and accessible resources for parents with disabilities online support groups are inviting millions of con- and their families. In fact, in the United States, parents nected parents to tell their stories to each other, with disabilities represent 15 percent of all parents of through listserv posts and web pages, unmediated by children younger than age 18. However, 24 percent editors or publishers. What is less common is the of single parents, 18.7 percent of African American parental narrative written in a non-Western cultural parents, and 16.3 percent of Hispanic parents have context (Kenzaburo Oe’s work being a notable excep- disabilities. tion here); parents in emerging economies, finding There is an overall lack of detailed national, their traditional sources of support lost without a regional, or local data on U.S. parents with disabili- strong system of alternatives in place, cannot access a ties and their children. Targeted national disability rich array of published narratives for making sense of surveys, such as the National Health Interview their circumstances. A wider range of cultural stories Survey, focus primarily on the impact of the adult’s would also work to place existing Western narratives disability on major life activities—such as work, edu- in a broader context than is now fully possible. Another cation, managing a home, or personal care—but do opportunity for comparison is beginning to emerge not investigate the impact on parenting activities. in narratives written by adult children about their As a consequence, national disability statistics pro- parents’ disabilities (for example, Alzheimer’s), a vide only broad estimates of the numbers of disabled reversed situation that may produce an equally intense parents but little detail about their family lives. In literature. The dimensions of intimacy, caregiving, addition, disabled parents and their children remain and power inherent in family life, as they are experi- invisible in most public and private data systems’ enced in the presence of disability, will thus long tracking services to parents or disabled adults in the remain a fertile, complicated, and ethically challeng- United States. As a result, the need for specialized or ing source of personal narrative. accessible services for parents with disabilities tends to be underestimated. —Penny L. Richards An analysis of the 1993 Survey of Income and See also Models; Novel, The. Program Participation, U.S. Census Bureau data by Linda Toms Barker and Vida Maralani, distinguished Further Readings disabilities in parents as 40 percent sensory, 26 per- Couser, G. Thomas. 1998. “Raising Adam: Ethnicity, Disability, cent physical, 24 percent psychiatric, and 16 percent and the Ethics of Life Writing in Michael Dorris’s The cognitive. The literature on parents with disabilities Broken Cord.” Biography 21(4): 421–444. reflects a tendency to overgeneralize about them, Ferguson, Philip M. and Adrienne Asch. 1989. “Lessons from often in a pathological direction. That is, negative Life: Personal and Parental Perspectives on School, Childhood, and Disability.” Pp. 108–140 in Schooling and assumptions about parents with emotional, psychi- Disability: Eighty-Eighth Yearbook of the National Society atric, or cognitive disabilities are generalized to for the Study of Education, Part II, edited by D. P. Biklen, parents with physical disabilities. Concerns about D. L. Ferguson, and A. Ford. Chicago: National Society for parents with acute disabilities such as a recent spinal the Study of Education. cord injury are generalized to parents who have long- Rapp, Rayna and Faye Ginsberg. 2001. “Enabling Disability: term stable disabilities, with coping skills and Rewriting Kinship, Reimagining Citizenship.” Public Culture 13(3): 533–556. resources that have developed over many years. A focus on variation in disability issues should not obscure the profound effect of cultural, environmen- ᨘ PARENTING tal, and psychosocial issues in the lives of parents with disabilities. A common misconception is that there are relatively Unfortunately, parents with disabilities and their few parents with disabilities. This assumption appears children face many social obstacles: Public policy to perpetuate social obstacles—a lack of appropriate and appropriate resources lag far behind the social Parenting———1207 changes that have led to the apparent increase in the Despite these problems, CROWD research found that numbers of parents with disabilities. The largest study traditional shelters and agencies for battered women on parents with disabilities to date was done for were generally not accessible for women with disabil- Through the Looking Glass by Maralani and Toms ities. Specialized services for mothers with disabilities Barker and yields data from a national sample of in the United States seldom effectively address trauma 1,175 parents with disabilities. Although participants issues. in the study tended to have more education, employ- In the U.S. survey of parents with disabilities, it ment, and income than most individuals with dis- was particularly concerning that 16 percent of these abilities, 23 percent had household incomes under predominantly physically disabled, well-educated $15,000 and 43 percent under $30,000. The many middle-class parents reported efforts to remove social obstacles and the lack of public resources mean children from their custody. The literature on parents that parents with disabilities and deaf parents in the labeled with developmental disability cites a 25 to 60 United States face more out-of-pocket costs than other percent rate of removal of their children. While 28 parents, while their incomes are lower. percent of adults labeled with “developmental disabil- In the national survey, transportation was cited by 83 ity” or “mental retardation” have children, only 14.4 percent as a problem for them as parents. Problems in percent of these adults have children living with them, housing accessibility was another key area that affected apparently reflecting this high removal rate. parenting. Another access problem was identified Through the Looking Glass’s National Resource regarding adaptive parenting equipment, such as Center for Parents with Disabilities has identified sig- adapted cribs. Such equipment is still essentially nificant problems in family courts and the child pro- unavailable on the market and is seldom reimbursed by tection system for parents with disabilities. In child public or private health or disability funding systems. Of protection systems, there has been a tendency to assume the 240 parents answering what prevented them from that parents with cognitive or emotional disabilities obtaining such equipment, around half did not know cannot parent or benefit from services, based solely on how to find information about such equipment and had their diagnoses. In family courts, there is often the no way to pay for it. During pregnancy or childbirth, assumption that marital custody by a parent with a 62 percent of parents had found a lack of disability physical or vision disability is “not in the best interest expertise on the part of professionals, attitudinal prob- of the child,” even when the primary relationship is lems, and/or interference in the right to become a parent. between this parent and child. Both systems often do Deaf parents also report social obstacles. Ninety not evaluate actual parent-child interaction (or do so percent of deaf parents have hearing children and face inadequately) and are unaware of disability adaptations, significant communication problems with their community supports, and relevant research. These children’s schools, as well as a lack of culturally and problems are compounded by the lack of disability- linguistically appropriate services for their families. appropriate preventive intervention in the United States. Mothers with disabilities may face more complex Similar problems in practice have been described by social obstacles. Research by the Center for Research Gwynnyth Llewellyn in Australia (see McConnell and on Women with Disabilities (CROWD) at Baylor Llewellyn 200) and Tim and Wendy Booth in England College of Medicine found that women with disabili- (see Booth and Booth 1994). ties in the United States are more likely to remain in The National Task Force on Parents with abusive relationships due to dependency. They report Disabilities in the United States has identified addi- longer durations of physical and sexual abuse com- tional underlying social obstacles. Policies, programs, pared to women without disabilities and different and funding streams tend to focus only on the parent forms of abuse, such as the withholding of personal or the child, rather than emphasizing the family as a assistance or adaptations. Intervention programs unit. Relationships and interaction between parent and report that trauma and abuse experiences are particu- child should be more of a focus in research, evalua- larly prevalent in mothers with intellectual disabilities. tion, and services. Personal assistance services (PAS) 1208———Parkinson’s Disease usually only serve the individual with the disability disabilities and their children. Disability-appropriate but will not provide any assistance related to care of an early intervention can achieve positive outcomes even infant or child. Both PAS and the availability of parent- in the most stressed families. ing adaptations are affected by the lack of inclusion of Parents with disabilities and their children demon- baby care or parenting as an “activity of daily living.” strate resilience and adaptability in the face of con- Since parents with disabilities are faced with so many siderable social obstacles. However, parents with social and environmental obstacles, adaptation emerges disabilities and their children are much more alike as a theme in their everyday family lives. In the 1980s, than unlike other families; parenting is about loving, Through the Looking Glass documented the natural guiding, caring, and nurturing, disability status aside. reciprocal adaptation process between parents with —Megan Kirshbaum physical disabilities and their babies. This research evolved into a number of studies focused on developing See also Children of Disabled Parents; Childhood, Youth, and and evaluating the effect of baby care adaptations for Adolescence; Family. parents with physical disabilities. The studies found that such equipment can have a positive impact on parent- Further Readings baby interaction, in addition to reducing difficulty, pain, Booth, T. and W. Booth. 1994. Parenting under Pressure: Mothers and fatigue associated with baby care. By reducing the and Fathers with Learning Difficulties. Buckingham, physical demands of caregiving, the equipment can be England: Open University Press. instrumental in preventing secondary disability compli- Conley-Jung, C. and R. Olkin. 2001. “Mothers with Visual Journal cations. Prevention of secondary injuries prevents Impairments or Blindness Raising Young Children.” of Visual Impairment and Blindness 91(1): 14–29. additional stress on the parent-child relationship. The Kirshbaum, M. and R. Olkin. 2002. “Parents with Physical, equipment has also appeared to have a significant role Systemic, or Visual Disabilities.” Sexuality and Disability in preventing or alleviating depression associated with 20(1): 65–80. postnatal exacerbation of disability, such as in multiple Kirshbaum, M., D. Taube, and L. Baer. 2003. “Parents with sclerosis. The research and clinical experience with par- Disabilities in Family Court Practice.” Journal of the Center for Families, Children & the Courts enting adaptations makes it clear that one cannot assess 4:27–48. McConnell, D. and G. Llewellyn. 2000. “Disability and the potential of a relationship between a parent with a Discrimination in Statutory Child Protection Proceedings.” significant physical disability and an infant without first Disability & Society 15(6): 883–895. providing whatever adaptive techniques and equipment Toms Barker, L. and V. Maralani. 1997. Challenges and Strategies of make it possible for interaction to occur and the infant- Disabled Parents: Findings from a National Survey of Parents parent relationship to develop. with Disabilities. Berkeley, CA: Through the Looking Glass. The incorporation of cognitive adaptations into pre- vention services for parents with intellectual disabili- ties has also been clinically documented as crucial to ᨘ PARKINSON’S DISEASE effective practice. Adaptations in communication are essential when evaluating or intervening with parents Parkinson’s disease (PD) was described in 1817 by with cognitive or learning disabilities, visual disabili- James Parkinson, a London physician, whose “Essay ties, and deafness. Without adapted communication, on the Shaking Palsy” reported his observations on six parents may be mislabeled as “unable to benefit from patients. It is a disease of the brain characterized by services” and therefore vulnerable to loss of custody. degeneration of nerve cells (neurons) in an area of the Inappropriate and disrespectful services can create midbrain known as the substantia nigra, which pro- rather than resolve problems in parenting by individu- duce the neurotransmitter dopamine and transport it to als with intellectual disabilities. The Booths have the basal ganglia. The latter are paired groups of nerve eloquently described such problems with practice in cells in the base of the brain involved with movement. England (Booth and Booth 1994). Parkinson’s disease typically begins between ages 55 Adaptations can remove disability obstacles to and 60 years. It is a common disease, affecting 1 to 3 fair evaluation and effective services for parents with percent of those older than age 60, and each year, Parkinson’s Disease———1209 between 5 and 25 new cases per 100,000 population Amantadine is an antiviral agent, which was discovered are diagnosed. serendipitously to have antiparkinsonian activity. Other The diagnosis is made be observing the character- medications are available to enhance the effectiveness istic signs described by James Parkinson. The classic of levodopa. When the symptoms of PD, particularly triad includes slowness of movement (bradykinesia movement fluctuations, cannot be controlled adequately or akinesia), a slow tremor of the hand at rest, and a with medication, surgery is an option for selected patients. ratchety-like resistance when a limb is passively moved, This involves inserting a permanent electrode into the known as cogwheel rigidity. Additional features include basal ganglia and connecting it to a battery, a procedure small handwriting (micrographia), a flexed posture, know as deep-brain stimulation. decreased facial expression, a soft-monotone voice, With modern therapy, most people with PD live shuffling gait, and, as the disease advances, impaired a normal or near-normal lifespan. Yet, disability balance with falls. increases as the disease advances, while its rate and The cause of most cases of PD is not known. degree vary greatly among patients. There are cur- Approximately 5 percent of patients have PD on a pri- rently no treatments that slow progression, but that is mary genetic basis. These include an autosomal dom- one of the most active areas of research. Throughout inant gene, which codes for the protein α-synuclein, the course of PD, medical and surgical therapies are among others, and the parkin gene, which causes auto- enhanced by rehabilitation directed at improving somal recessive, young-onset PD. Yet, most cases of strength, flexibility, endurance, gait and balance, PD are sporadic, and genes appear to play a contribu- speech, swallowing, and the activities of daily living. tory role but are not directly causal. Epidemio logic Although motor problems and their treatment are studies have demonstrated that environmental factors, the main focus of managing PD, equal attention must such as being raised in a rural environment, drinking be paid to the psychological and cognitive well-being well water, having a prior head injury, and exposure to of patients, as well as the needs of caregivers. Depres- pesticides, are putative risk factors for PD, but none sion is very common in PD and is considered to have has been shown to be directly causal. an organic basis and not simply a reaction to disabil- The treatment of PD is based on the deficiency of ity. With advancing disease, many patients develop dopamine in the basal ganglia. The mainstay of ther- cognitive impairment and often frank dementia, fur- apy is levodopa, which is converted to dopamine by ther contributing to disability and caregiver distress. the remaining nigral neurons. It is combined with The diverse and progressive symptoms and signs of carbidopa to prevent nausea. As PD advances, the PD emphasize the importance of a multidisciplinary response to levodopa diminishes, and many patients no approach for successful management. longer have a smooth transition between dosages, lead- —Stephen G. Reich ing to fluctuations. During periods when levodopa is working, there is relative freedom of movement, alter- See also Epidemiology; Neurological Impairments and Nervous nating with times when levodopa does not work, char- Disorders. acterized by an exacerbation of symptoms, including immobility. These fluctuations, known as “on-off,” are Further Readings further complicated by periods when there is an exag- Factor, Stewart A., and William J. Weiner. 2002. Parkinson’s Disease: gerated, unwanted response to levodopa, producing Diagnosis and Clinical Management. New York: Demos. excessive twisting movements known as dyskinesias. Havemann, Joel. 2002. A Life Shaken: My Encounter with Parkinson’s In addition to levodopa, a number of other therapies Disease. Baltimore: Johns Hopkins University Press. can either be used alone or as adjuncts to levodopa. Lang, A. E. and A. M. Lozano. 1998a. “Parkinson’s Disease” Dopamine agonists work directly on the dopamine (Part 1). New England Journal of Medicine 339:1130–1143. New England receptor and, like levodopa, are often used as initial ther- ———. 1998b. “Parkinson’s Disease” (Part 2). Journal of Medicine 339:1044–1053. apy. Anticholinergics are the oldest agents used for PD Olanow, C. W. 2004. “The Scientific Basis for the Current and help restore balance in the basal ganglia between Treatment of Parkinson’s Disease.” Annual Review of dopamine and another neurotransmitter, acetylcholine. Medicine 55:41–60. 1210———Participation

ᨘ PARTICIPATION crucially judged by the extent to which people can exert influence and bring about change. Participation has become a core concern of disabled The concept of public participation developed in people and disabled people’s organizations because of the context of land-use planning in the 1960s, became the discrimination, barriers, and segregation that his- a key concern of community development, and is torically they have experienced and seek to overcome. central in a growing number of discussions and devel- Disabled people’s political participation can only ade- opments, including the emergence of new social move- quately be understood within a broader understanding ments, postmodernism, public policy and services, the of ideas of participation. Participation is a complex, rekindling of interest in citizenship, “human need,” ambiguous term without an agreed-on definition, to “social exclusion,” and the search for a new more par- which disabled people have added their own mean- ticipatory politics. ings. Disabled people internationally have developed Because participation is an inherently political con- three particular focuses for their participation. These cept, it is contentious, without a clear or agreed-on are as follows: definition. There is also no consensus about terminol- ogy, with different words used, including citizen par- participation in the support they receive, to ensure it ticipation, self-advocacy, and consumer involvement, meets their needs and is consistent with, rather than restricts, their human and civil rights (this aim is sometimes synonymously, sometimes to impart differ- embodied in the disabled people’s development of the ent meanings. international independent living movement); participation in society more generally, to ensure that COMPETING APPROACHES disabled people are able to live in mainstream society TO PARTICIPATION on equal terms with nondisabled people, with equal access to mainstream employment, education, health, Generally framed in terms of “consumer” or “user and other services and opportunities, instead of being involvement,” the idea of participation reemerged segregated in separate structures and provision; internationally toward the end of the twentieth century as a key idea, policy, practice, and goal, particularly in political participation, to afford disabled people the the fields of public policy, health, and welfare. This same democratic rights as nondisabled people and renewal of interest in participation relates to two fre- equal opportunities to influence and take part in public life. These concerns are reflected in the rights- quently opposed and broader developments. First is based approach of the disabled people’s movement the development of increasingly powerful and influ- and its emphasis on disabled people’s rights and ential movements of disabled people and other long- responsibilities based on equal citizenship. term recipients of health and social care, with their own democratically constituted local, national, and THE NATURE OF PARTICIPATION international organizations and groupings. Second has been shifts in ideology and economics, which have Participation implies active involvement in the public resulted in a expansion of interest in the market and and social sphere and refers to a range of involvements individual responsibility, linked with the philosophy that individuals and groups may have in organizations, and rhetoric of consumerism, highlighting individual institutions, and decisions affecting them and others. choice and involvement. There are many approaches to and understandings of This has resulted in two competing understandings participation and involvement. These have most often of user involvement, which are often confused—the been framed in terms of the degree of involvement people first from the disabled people’s and related move- have—from zero to control; from tokenism, through ments, committed to people speaking for themselves consultation, to a primary say in decision making. This and securing and safeguarding their human and civil was notably expressed in Sheri Arnstein’s (1969) rights, choices, and quality of life, and the second “Ladder of Citizen Participation.” Participation is from states and service systems, including private Participation———1211 providers, reflecting consumerist concerns of improv- development initiatives have been framed in terms of ing the efficiency, effectiveness, and economy of “community” involvement; and health and welfare services. The first approach starts with people’s lives, initiatives have been framed in terms of “user” and the second with the concerns of service systems. “patient” involvement. Typically, disabled people These two approaches to participation—the “democ- have not been equally included as members of the ratic” and the “consumerist”—do not sit comfortably. public and communities and therefore may not be One is managerial and instrumental in purpose, with- equally represented in such categorization. Thus, out any commitment to the redistribution of power or policy for participation can reinforce the broader control; the other is liberational, with a commitment exclusions and discrimination that disabled people to empowerment. face. They are also associated with different strategies Disabled people, like some other new social move- for participation. The consumerist preoccupation with ments, have developed an approach to participation service user feedback is reflected in an emphasis on based on identity. They also emphasize participation consultation and data collection exercises focusing on in their own self-organization, highlighting their local, the planning, management, and market testing of spe- grassroots, and “bottom-up” approach to collective cialist services. The frequent experience of disabled action. In their self-organization, they have generally people is that such exercises have very limited effects developed their own representative structures to on improving their lives and support while making ensure accountability, but they also emphasize and significant demands on them. Their concern is with prioritize the role of direct democracy in their broader bringing about direct change in people’s lives, through collective action and campaigning. collective as well as individual action. The disabled While participation is generally associated with people’s movement bases its approach to participation the public sphere, it is also affected by people’s cir- on the social model of disability, using both constitu- cumstances and responsibilities in the personal tional and direct action. It has prioritized independent sphere. This can limit the participation of many groups, living, civil rights legislation, and the provision of ade- notably women, because of the care and support quate support for organizations controlled by disabled responsibilities that continue to be placed on them people themselves. disproportionately and disabled people, if they are denied appropriate personal support or their access DISABLED PEOPLE requirements are not met. AND PARTICIPATION Two components are essential if disabled people are to have a realistic chance of participating and all Participation makes possible the negotiation of differ- groups, regardless of the nature of their impairment, ent, often competing interests. Participation is also an are to have equal access to involvement. These are idea inseparable from issues of power and inequalities access and support. Both are essential. Experience of power. As a constituency, disabled people are still indicates that, without support, only the most confi- relatively disadvantaged, in terms of income, class, dent, well-resourced, and advantaged people and status, and power. This is one reason why it is helpful groups are likely to become involved, while without to consider who is being involved, when exploring access, efforts to become involved are likely to be the policy and practice of participation. The equal arduous and ineffective. Access includes equal and inclusion of people in participatory developments ongoing access to the political structure at interna- has so far been a major and unresolved problem. The tional, national, regional, and local state levels and evaluation of participation is still at an early stage. to other organizations and institutions that affect Different approaches to participation also frame people people’s lives. Support includes increasing people’s in different categories. Thus, public policy initiatives expectations and confidence; extending their skills; have generally been framed in terms of “public partici- offering practical support such as child care, informa- pation”; regeneration, community, and international tion, advocacy, and transport; enabling people to get 1212———Passing together in groups; and ensuring that women, minority ᨘ PASSING ethnic groups, and others facing discrimination can get involved on equal terms. Although passing originally defined any form of pretense concerning identity, its meaning today refers increasingly to identity disguise motivated by social PARTICIPATION IN CONTEXT injustice and oppression. Passing is one strategy for While participation is generally presented in positive managing what Erving Goffman (1963) calls the stigma terms, it also has a regressive potential. Participatory of spoiled identities—those identities discredited by initiatives can frequently serve to obstruct rather than law, opinion, or social convention. For example, when increase people’s involvement. They are sometimes in the minority and powerless, Jews pretend to be used to tokenize and co-opt people, delay decisions Christians, blacks pass as white, gay and lesbian and action, and legitimate predetermined agendas and people masquerade as heterosexual. Similarly, people decisions. This has been identified as a major problem with disabilities find ingenious ways to conceal their in international development, where indigenous impairments and to pass as able-bodied. Disabled involvement sometimes serves to put a participatory people who pass are often accused of leading an exis- gloss on policies imposed from outside, beyond local tence that endorses deception, accommodation, and control. This relates to a more general and fundamen- betrayal, despite the fact that passing is necessary only tal tension that exists when arrangements for partici- because of the inequality and injustice of society. patory or direct democracy exist in political structures They supposedly deceive society at large, acquiesce to based primarily on a system of representative democ- its injustices for personal gain, and betray other dis- racy. So far, little work has been done to explore if and abled people who are unwilling to pass. A more com- how these two approaches to political participation plex consideration of disability passing, however, may be reconciled. As a result, some disabled com- focuses on the psychological and physical price paid mentators see participation as a necessary but not suf- by those who pass as well as on the knowledge they ficient condition for their liberation, arguing for an have acquired about the organization of human emancipatory, as well as a participatory, politics. society. On one hand, to free themselves from curios- ity, prejudice, economic disadvantage, and violence, —Peter Beresford disabled people develop sophisticated tactics designed to help them blend into society, but these tactics may See also Decision Making; Patient-Professional Relationships; Political Participation; Voting. also exact a heavy toll on individuals both mentally and physically, leading to psychological crises and Further Readings secondary health problems. On the other hand, pass- ing represents a vivid understanding of everyday life Arnstein, Sheri. 1969. “A Ladder of Citizen Participation.” Journal of the American Institute of Planners 35(4): 216–224. and its conventions. Those who pass treat social situ- Barnes, Colin, Mike Oliver, and Len Barton, eds. 2002. Disability ations that others consider natural and normal as cal- Studies Today. Cambridge, UK: Polity. culated, artificial, and subject to manipulation, Beresford, Peter and Suzy Croft. 1993. Citizen Involvement: A thereby demonstrating their knowledge about social Practical Guide for Change. Basingstoke, UK: Macmillan. organization and human perception. Passers are skill- Cooke, Bill and Una Kothari, eds. 2001. Participation: The New ful interpreters of human society. They recognize that Tyranny? London: Zed Books. Oliver, Michael. 1996. The Politics of Disablement. Basingstoke, in most societies, there exists no common experience UK: Macmillan. or understanding of disability on which to base their identity. For where a common acceptance of disability Websites exists, passing is unnecessary. Centre for Disability Studies, University of Leeds, www.leeds.ac Passing is one strategy useful to manage the loss .uk/disability-studies of self created by the oppression of people with dis- Joseph Rowntree Foundation, www.jrf.org.uk abilities. Temporary passing is empowering, producing Passing———1213 brief moments of freedom from the prejudice and define sightedness and the capacity to reproduce morbid curiosity often found to surround disability. them. Sighted people need not pretend to see and Pretending to be able-bodied is one way of perform- would not be able to do so if required because the ing normalcy, of inserting oneself in society and knowledge of seeing is unnecessary to their existence. escaping the alienating experience of being disabled. A deaf boy may pass by asking questions to which he In the long term, however, disabled people who try to already knows the answer and by attending to subtle pass may feel guilty or become depressed about con- cues about how he should react in conversation, while structing their acceptance by society on the basis of a hearing person has no need to learn such nuanced pretense. They also internalize prejudices against dis- behaviors. Passing involves playing roles, but its ability, seeing their hidden identity as wrong, lacking, essential character is less a matter of deception than of or shameful. For both the physically and mentally an intimate knowledge of human ability and its every- disabled, passing often requires overcompensation day definition. Those who pass understand better than that exacerbates already existing conditions. A woman others the relation between disability and ability in with chronic fatigue or post–polio syndrome may any given situation. As careful strategists of social extend herself to the limits of endurance to maintain interaction, they know what sightedness looks like, the appearance of able-bodiedness, but the result will though they may be blind; they know what conversa- be a worsening of her condition, sometimes perma- tion sounds like, though they may be deaf. nently. The college student with a learning disability The limits of disability passing are often thought to may discover that passing adds levels of unbearable rely on the visibility of an impairment. People with stress to an already difficult classroom situation. visible disabilities do pass, however, and often with Moreover, those who pass often find that keeping their relative ease because a common knowledge of dis- secret requires solitude. Passing is a solo experience ability does not exist in many situations. Both this for most people. The feelings of relief that accompany ignorance about disability and the general anonymity coming out as disabled often derive from the discov- of modern life produce opportunities for passing. People ery that one is no longer alone and that other disabled in public, disabled and nondisabled alike, prefer not to people exist on whom one may depend for accep- be noticed, with the consequence that disabled people tance, friendship, and love. may pass as able-bodied simply by obeying the uncon- Passing requires a working knowledge of human scious laws of anonymity. Moreover, people with dis- society often unavailable to the majority of people. It abilities are often recognized by their tools rather than entails a conscious engagement with and obedience of their impairments. A power chair of unusual design social rules, creating the impression of being able- may not present as a wheelchair. A blind person bodied by close attention to the details of everyday without a white cane or whose guide dog is not the life. Passing also requires individuals to make quick expected breed may not be perceived as blind. calculations in unexpected situations to avoid expos- Similarly, when people with disabilities make their ing their identity. Those who pass have a gift for deal- behavior conform to expectations about disability and ing with unstable social situations from which we all then reverse these expectations, their status as dis- might learn; they create a zone of comfort that blan- abled is placed in doubt. The individual who enters a kets disability with the appearance of normalcy, mak- bookstore in a wheelchair but stands to take a book off ing an art of helping nondisabled people feel more a shelf will confuse those who lack knowledge about comfortable with the presence of disability. Passing disability. Passing demonstrates that the visibility or also depends on special insights about the ways that invisibility of an impairment is a less significant fac- human society and perception are organized. A blind tor in the recognition of disabled people than the fact woman pretends that she can see by giving the that a common experience of disability is rarely avail- impression that she is sighted. Her role-playing is able in society. intentional and precise and will be successful only if Disabled people who pass understand more vividly she has both acute knowledge of the behaviors that than others that society possesses no common 1214———Patient-Professional Relationships experience of disability. The lack of common knowl- characterized by diverse perspectives. Research has edge underwrites passing, for widespread understand- shown that patients’ relationships with professionals ing and acceptance of disability would render passing are critical to the outcomes of their health care. In not only impossible but unnecessary. While people addition, these relationships often influence patients’ with disabilities who pass have an understanding of willingness to return for health care should the need both disability and its able-bodied counterparts, able- arise. A number of theoretical models have been devel- bodied people often have little idea of the conventions oped and used to build and maintain positive patient- shaping either their own abilities or the disabilities provider relationships. These include models of they shun. The sighted are blind to blindness, and the patient-provider communication, interactive reasoning hearing, deaf to deafness. When the able-bodied attempt models, and client-centered models, among others. to pass as disabled, for example, they rarely succeed, According to these models, key elements of the producing unconvincing versions of disability recog- patient-provider relationship include the necessity for nizable only by their exaggeration, and yet disabled rapport, empathic understanding, mutual trust, empow- persons are able to pass where the nondisabled fail. erment, and reciprocal communication. However, models Disabled people who pass have a double experience of of the patient-provider relationship tend to differ with the oppression of disability from which both disabled respect to the degree to which they emphasize a direc- and nondisabled people might learn. Like all disabled tive versus a nondirective or client-centered approach people, those who pass experience the oppression of to interaction. disability on a daily basis, but they also have an inti- In directive approaches, the professional assumes mate knowledge of just how little the habits of every- the role of expert, and his or her role is to provide day life relate to disability. If their knowledge of human an informed viewpoint, structure, and direction to the society were more widespread, disabled individuals treatment process. Providers who favor a directive tempted to pass might move from the desire to pass to approach also tend to favor a problem-solving, logical- the desire to unlearn passing and call upon others to deductive approach to treatment. Client-centered or recognize and accept their disabilities. empowerment-oriented approaches tend to be less directive and less structured. Professionals in favor —Tobin Siebers of these approaches tend to seek the patients’ views See also Inclusion and Exclusion; Stigma; Visibility and Invisibility. about the presenting concerns and encourage patients to control and direct their own care. Further Readings For disabled people, the nature of their relation- Brueggemann, Brenda Jo. 1999. Lend Me Your Ear: Rhetorical ships with health care professionals is critical. The Constructions of Deafness. Washington, DC: Gallaudet attitudes and emotions that accompany these relation- University Press. ships, as well as the settings in which these interac- Brueggemann, Brenda Jo and Georgina Kleege. 2003. “Gently tions take place, affect the degree to which health care Rhetoric Down the Stream: Reflections on Mainstreaming.” is viewed as relevant, useful, and ethical. A number of Review 22(2): 174–184. Goffman, Erving. 1963. Stigma: Notes on the Management of researchers, educators, and activists have examined Spoiled Identity. New York: Simon & Schuster. and critiqued relationships between disabled people Mitchalko, Rod. 1998. The Mystery of the Eye and the Shadow of and health care professionals. Some of the more Blindness. Toronto: University of Toronto Press. prominent voices in this analysis include Ian Basnett, Sally French, John Swain, John McKnight, Susan Wendell, Susan Lonsdale, Barbara Altman, and Peter ᨘ PATIENT-PROFESSIONAL Coleridge, among numerous others. Existing literature RELATIONSHIPS from this perspective includes testimonials and research reports that highlight the negative aspects, Patient-professional relationships involving disabled weaknesses, and areas for improvement within patient- people and their health care providers is an area professional relationships. These reports range from Patient-Professional Relationships———1215 expressions of marked dissatisfaction with profession- do not fit into neat diagnostic slots, professionals als to analyses and discussions of injustice, stigmati- opt for psychiatric diagnoses of their secondary con- zation, and victimization by professionals toward cerns and do not accurately assess the underlying dis- disabled people. ability. This invalidation is also evident in the early Like many relationships, the evolution of patient- diagnostic labels given for less visible disabilities. professional relationships has involved a number of For example, multiple sclerosis was once referred to interacting variables. These include the personal char- as malingerer’s syndrome or housewife’s syndrome. acteristics and individual differences among and Similarly, people with difficult-to-diagnose or poorly between professionals and patients. Larger contextual understood conditions, such as chronic fatigue syn- forces are also involved that address the societal norms drome, chronic pain, and fibromyalgia, have often of power, control, and hierarchy characteristic of the faced ridicule, misdiagnosis, denial of care, and other medical model of care. This model focuses on treat- stigmatizing attitudes and behaviors from profession- ment or cure of damaged or failing body parts or als. For example, individuals with invisible disabili- systems. The implication of such an approach for dis- ties have described a number of difficulties obtaining abled individuals is that body parts or systems that do social services. Caseworkers with no knowledge of not function as well as those of the nondisabled need these conditions have denied benefits based on judg- to be remediated or fixed. If the impairment cannot be ments that these conditions are not legitimate dis- fixed, then the individual is somehow lacking or not abilities. These problems have a sharp impact on whole. patient-professional relationships and can harm Examples of these experiences are provided by patients at a time of great vulnerability. Yet, it is not number of writers and researchers, including but not simply that professionals deny that these are disabili- limited to Susan Wendell (1996) and Susan Lonsdale ties or refuse services, important though those are. (1990). Susan Lonsdale has interviewed a number of The larger issues of how disabilities are recognized disabled women and found that they related many and legitimized for treatment by society and the health harmful experiences of hospital treatment and medical care professions are relevant. To some extent, profes- care. Visits to health care professionals were sionals reflect the societal awareness at the time. This described as frightening in childhood. Women is a problem since society can delay in understanding recalled being asked questions that were experienced and recognizing emergent disabilities, especially ones as inappropriately personal and insensitive. They that are not readily visible such as chronic fatigue syn- recalled being photographed unclothed and being drome. Thus, professionals are not the only individu- pressured to walk naked in front of medical students. als who bear the responsibility to address and correct Peter Coleridge (1993) believes that the self-image of this process. many disabled people has been damaged from their For example, on average, individuals with chronic frequent involvement with professionals. This harm fatigue syndrome and fibromyalgia have seen 10 or occurred particularly during childhood when necessary more physicians, and it has taken five years or more to experiences of play, enjoyment, and discovery were obtain a diagnosis. Many with these conditions have attenuated or altogether replaced by stress, medical been told erroneously that their conditions were due to exams, and rehabilitation programming. stress, mental illness, or lifestyle. The implication of The negative impact resulting from objectification these messages is that that the person’s experience of of the body and the medicalization of disability is also his or her condition is not valid, that the individual experienced by individuals with fluctuating or broadly is to blame for his or her condition, and that it is the defined chronic illnesses, such as arthritis, lupus, and responsibility of the individual to overcome it. As a multiple sclerosis. Individuals with these conditions, result of these experiences, many people with poorly which are sometimes referred to as emergent or invis- understood disabilities have developed a tendency ible disabilities, have been labeled as being depressed, to mistrust and doubt their health care providers. anxious, or otherwise neurotic. Because their symptoms Discrimination is often multiplied for disabled people 1216———Patient-Professional Relationships of lower socioeconomic status, as well as for those who parents, and his attorney but advised the woman not to are considered members of racial and ethnic minority attend because he thought the situation would be too groups. stressful for her because of her disability. Years after As a support group facilitator, the second author the divorce was finalized, this woman is still discov- has had many conversations involving the same recur- ering the adverse consequences of her lack of direct rent theme—mistrust of health care providers. One involvement in these negotiations. Many of these individual with fibromyalgia commented, “Doctors consequences involve economic issues. don’t know what they’re doing....Every time I ask Medical perspectives that grow out of societal atti- my doctor something he has to pull out a book and tudes toward persons with disabilities can have a neg- look it up, or, says I don’t know, or that’s a bad idea!” ative effect in patient-professional relationships. A law enforcement officer with an invisible disability Contemporary writers argue that pejorative and misin- related during one physician’s appointment that he formed notions of disability, often characterized as the asked his doctor about an alternative medicine ther- tragic view (or personal tragedy view) of disability apy. The physician remarked, “I think you’re reading and impairment, have been reinforced by health care too much.” Another person related that three separate professionals. This view and its reinforcement have physicians are treating her because she does not developed through health care workers’ professional believe any one physician knows how to help her. training, through their traditional approaches to practice, Moreover, patients report that health care providers and through their biased interactions with disabled indi- are often not aware of the physical and logistical viduals. Health care professionals’ contact with persons challenges they face, including challenges involving with disabilities is often limited to times when disabled mobility and transportation, limited or absent health individuals are most recently injured or acutely ill. care insurance, job schedules, and economics. Failure This tragic view holds that disability is something to arrive at scheduled appointments on time is often that should be avoided, reduced, rehabilitated, elimi- not tolerated or is interpreted by professionals as self- nated, or normalized by adopting as much of the life- ishness, disorganization, or noncompliance with treat- style and behavior of a nondisabled person as ment recommendations without appreciation of possible. This view of disability is so prevalent that it challenging complexities in the environment. has affected decisions and values about birth and the In addition, a number of disabled individuals have right to life. Writers have argued that the abortion encountered paternalistic attitudes in their relationships of impaired fetuses is not commonly challenged with health care providers. Many report not being within the United States. Gynecologists are now being asked for input or concerns about health care or sued if they do not appropriately screen for and detect service needs. The professional reviews the patient’s impairments and abnormalities, including having one situation, makes a determination, and sets a plan of extra finger or toe. Physicians and society as a whole action. Then the patient is directed to follow a proto- put pressure on women to undergo prenatal screening col. Another example of paternalism is evidenced in and to terminate pregnancies in which medical pathol- attempts by professionals to protect patients by fail- ogy has been detected. Notwithstanding considerable ing to provide them with complete information about scientific evidence to the contrary, the idea that dis- their condition or by deliberately excluding them from abled people and their parents cannot sustain a joyful, involvement in key decisions. For example, some fulfilling, or adequate quality of life is prominent within patients have learned by accident that health care the tragic viewpoint. providers or legal advisers have “sugarcoated” or hid the severity or consequences of a situation because RESEARCH they felt that they (the professionals) knew what was best for the person. For example, a disabled woman was Individuals writing from the perspective of disabled going through a difficult divorce. Her attorney insisted people are not alone in their observations. Similar on closed-door negotiation with her ex-husband, his observations have been made in a smaller body of Patient-Professional Relationships———1217 research and writings documenting the attitudes and many of which provide specialized forms of behaviors of health care professionals. The literature transportation, embrace rigid treatment protocols, indicates that the power imbalance that characterizes structures, and routines and fail to involve consumers the medical model of care may, in part, contribute to meaningfully in daily decisions, and operations serve the injustice, dominance, and delegitimization experi- to foster and reinforce this dependency. These struc- enced by disabled people in their relationships with tures can encourage dependency, resentment, or both health care professionals. Writers and researchers within patient-professional relationships. Systems and such as Sally French, John Swain, and John McKnight practices that are set up to encourage dependency have defined and discussed extensively the elements have secondary effects on some disabled people. of power that are central to patient-provider relation- These consequences may involve internalized oppres- ships. The first involves the power of knowledge sion in which the disabled person accepts his or and skills possessed by professionals by virtue of her role as a dependent, disempowered individual. their education and training. Professionals possess the Ultimately, this process makes it more difficult for the power to evaluate the impairments that disabled recommendations made by professionals to be suc- people have and label their problems and needs based cessfully embraced, and it makes it more difficult for on their own perceptions of those needs. They also the disabled person to achieve independence. recommend specific treatments and evaluate the com- Over the past four decades, there have been efforts pliance and effectiveness of those recommendations. to counteract existing social norms through move- According to Heather Coates and Alan King ments such as the disability rights movement, the (1982), the professional’s observations are often independent living movement, and the patient power viewed as accurate, objective, and therefore superior, movement. These social movements are covered whereas the patient’s perceptions are viewed as sub- elsewhere in the encyclopedia. jective and therefore inferior. Professionals not only possess power when working as individuals within WORK IN PROGRESS clinical settings, but some groups, particularly physi- cians, also possess power collectively in that they are Disability advocates and progressive health care edu- viewed as a high-status and economically and politi- cators and providers have formed a number of initia- cally influential group within society. Professionals tives to improve patient-professional relationships. are more often consulted in the process of making Values emanating from these movements and from public policy decisions that have a wide range of client-centered models of care emphasize nonhierar- social and economic implications, including decisions chical, egalitarian relationships between consumers involving abortion, genetic and stem cell research, and professionals in which the role of the professional cloning, and the sale of tobacco, alcohol, and other is limited to providing the patient accurate and bal- products, just to name a few. Professionals, rather than anced knowledge and information. Key decisions per- patients, are also called upon to make decisions that taining to health care, treatment, and participation in help insurance companies decide whether a patient all other domains of life are within the control of the deserves benefits or whether that patient is capable of patient. Other recommendations to improve patient- returning to work. professional relationships that have emerged from As observed by Barbara Altman, Sally French, and these movements and have been put in place to some others, practices that involve professional power extent include training health care professionals to encourage, maintain, justify, and enforce the depen- understand the broader psychological, social, and eco- dency of disabled individuals on professionals and nomic influences of health and disability outside the professionally driven institutions. Nursing homes, res- health care system. For example, health care profes- idential facilities (such as those for foster children sionals from all disciplines have benefited from or individuals with chronic illness, mental illness, or increased understanding of the role of physical developmental disabilities), and day care programs, aspects of the environment that prevent access to full 1218———Patients’ Rights participation in community and occupational settings. able to custom-tailor their approach to the client’s A final contribution that has emerged from these move- needs may share in the most positive outcomes with ments is the recommendation and practice of employ- their clients. ing more disabled individuals in the roles of health and —Renee R. Taylor and social service professionals. Sabrina Dudley Johnson One significant step toward incorporating these recommendations into real-world practice has involved See also Attitudes; Decision Making; Health Care and Disability. the establishment of centers for independent living and other centers that embrace peer-facilitated models Further Readings of care and the empowerment of disabled people by Altman, Barbara. 1981. “Studies of Attitudes towards the disabled people. Many disabled people prefer profes- Handicapped: The Need for a New Direction.” Social sionals who treat them as partners in their health care, Problems 28:321–327. legal situations, and in their search for social services. Basnett, Ian. 2001. “Health Care Professionals and Their Attitudes toward and Decisions Affecting Disabled People.” Pp. 450–467 Many patients take the time to learn as much as they in Handbook of Disability Studies, edited by G. L. Albrecht, can about their disability, legal issues, treatment K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage. advances, and research updates. The most empowered Coates, Heather and Alan King. 1982. The Patient Assessment. patients expend the energy to learn about disability- Edinburgh, UK: Churchill Livingstone. related social services and attend self-help or support Coleridge, Peter. 1993. Disability, Liberation and Development. groups. Oxford, UK: Oxfam. French, Sally and John Swain. 2001. “The Relationship between It appears that the most satisfied patients are the Disabled People and Health and Welfare Professionals.” ones who feel empowered and know how to advocate Pp. 734–751 in Handbook of Disability Studies, edited by for themselves in their relationships with profes- G. L. Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, sionals. Relationships with professionals work when CA: Sage. disabled individuals have health care providers, legal Lonsdale, Susan. 1990. Women and Disability. London: advisers, and social service advocates who not only Macmillan. McKnight, John. 1981. “Professional Service and Disabling Help.” appreciate these qualities but also promote them. Pp. 24–32 in Handicap in a Social World, edited by A. Brechin, Individuals fortunate enough to find such relation- P. Liddiard, and J. Swain. London: Hodder and Stoughton. ships discover that they can have useful and relevant Wendell, Susan. 1996. The Rejected Body. New York: Routledge. conversations with the various professionals in their Websites lives. They can express their ideas and concerns about their situations in a trusted atmosphere without fear of Iowa Training Consortium, www.disabilitytraining.org being ridiculed. Research Group on Rehabilitation and Independent Living, In general, advocacy groups promote the value that www.rgril.ku.edu patients take charge of their disabilities and become an integral component of their health care. In sum, ᨘ PATIENTS’ RIGHTS health care professionals can occupy an important role in the lives of disabled individuals, and the way When people with disabilities enter a hospital setting, in which they regard and choose to relate to disabled they expect to be talked over, around, and about based individuals inevitably affects their well-being in emo- on a perception by medical staff that they, by the tional, social, economic, and political arenas. Well- virtue of their disability, are not capable of thinking or intended professionals can provide valuable services talking for themselves. This behavior on the part of that are nonetheless useful in the context of asymmet- medical staff is historic and reflects society’s attitude ric relationships. There are some circumstances and about disability and infirmity. As a practical matter, cultures in which people may not be ready or accept- rehabilitation hospitals present less discrimination than ing of an egalitarian or empowering approach. In sum, acute hospitals because rehabilitation settings are more professionals who are sensitive to these issues and used to dealing with people with disabilities. Patients’ Rights———1219

People with disabilities and the organizations that (iv) Provide different or separate aid, benefits, or represent them have been working over the past 40 services to persons with disabilities or to any class of years to change people’s attitudes about disabilities. persons with disabilities unless such action is neces- One of the major methods of choice has been to use the sary to provide qualified persons with disabilities law to improve wheelchair accessibility, to eliminate with aid, benefits, or services that are as effective as discrimination in employment, to provide equal access those provided to others; (v) Aid or perpetuate discrimination against a to services to all people with disabilities, and to ensure qualified person with disabilities by providing signif- communications access throughout the new electronic icant assistance to an agency, organization, or person world. Unfortunately, we as a society were not able to that discriminates on the basis of disability in provid- reduce discrimination against people with disabilities ing any aid, benefit, or service to beneficiaries of the without resorting to the use of the law, but that is how recipients’ program or activity; it is getting done. In what follows, I offer several exam- (vi) Deny a qualified person with disabilities the ples of legal and institutional documents, which enu- opportunity to participate as a member of planning or merate patients’ rights in a disability context. Together advisory boards; or they suggest a range of societal reactions motivated to (vii) Otherwise limit a qualified person with dis- protect the rights of those with disabilities both in a abilities in the enjoyment of any right, privilege, medical setting and in society at large. advantage, or opportunity enjoyed by others receiv- When Americans with disabilities think about their ing an aid, benefit, or service. legal and civil rights, they consider two milestones in In addition, federal law related to services and nondiscrimination. The two milestones are Section 504 of the Rehabilita- In determining the site or location of a facility, an tion Act of 1973 and the Americans with Disabilities applicant for assistance or a recipient may not make Act (ADA) of 1990. The Rehabilitation Act affects only selections (i) that have the effect of excluding persons recipients of federal funding, including most hospitals. with disabilities from, denying them the benefits of, The law, with respect to services, states that or otherwise subjecting them to discrimination under any program or activity that receives Federal finan- no otherwise qualified individual with disabilities... cial assistance. shall, solely by reason of his disability, be excluded from participation in, be denied the benefits of, or be In 1990, the ADA built on Title V of the subjected to discrimination under any program or Rehabilitation Act of 1973 and declared that regardless activity receiving federal financial assistance. (29 of funding, the provision of services available to the USCA § 794, Section 504 of the Rehabilitation Act of general public could not discriminate against people 1973, as amended) with disabilities. The ADA states the following: The regulations provide further clarification. The kinds of discriminatory acts prohibited include No individual shall be discriminated against on the actions that basis of disability in the full and equal enjoyment of (1) directly or through contractual, licensing, or other the goods, services, facilities, privileges, advantages, arrangements, on the basis of disability: or accommodations of any place of public accom- (i) Deny a qualified person with disabilities the modation by any person who owns, leases (or leases opportunity to participate in or benefit from the aid, to), or operates a place of public accommodation. benefit, or service; (42 USCA §12182(a), Americans with Disabilities (ii) Afford a qualified person with disabilities an Act of 1990) opportunity to participate in or benefit from the aid, ben- efit, or service that is not equal to that afforded others; And through regulation: (iii) Provide a qualified person with disabilities with an aid, benefit, or service that is not as effective (a) Prohibition of discrimination. No individual shall as that provided to others; be discriminated against on the basis of disability in 1220———Patients’ Rights

the full and equal enjoyment of the goods, services, and third party credits and shall be allowed to exam- facilities, privileges, advantages, or accommodations ine an explanation of said bill regardless of the source of any place of public accommodation by any private of payment.” entity who owns, leases (or leases to), or operates a place of public accommodation. (b) Landlord and tenant responsibilities. Both the “Every Patient or Resident of a Facility Shall Have landlord who owns the building that houses a place the Right: of public accommodation and the tenant who owns or operates the place of public accommodation are (a) upon request, to obtain from the facility in public accommodations subject to the requirements of charge of his care the name and specialty, if any, this part. As between the parties, allocation of respon- of the physician or other person responsible for sibility for complying with the obligations of this part his care or the coordination of his care; may be determined by lease or other contract. (28 (b) to confidentiality of all records and communica- CFR 36.201, DOJ, Nondiscrimination on the basis of tions...; disability in places of public accommodation) (c) to have all reasonable requests responded to promptly and adequately within the capacity of Many states have a “Patient’s Bill of Rights,” the facility; applicable to both patients with and without disabili- (d) upon request, to obtain an explanation as to the ties, which builds on the Rehabilitation Act and the relationship, if any, of the facility to any other ADA. As an example, the Massachusetts “Patient’s health care facility or educational institution Bill of Rights” follows the subsequent concepts. insofar as said relationship relates to his care or treatment; (e) to obtain from a person designated by the facil- ity a copy of any rules or regulations of the MASSACHUSETTS GENERAL facility which apply to his conduct as a patient LAWS, CHAPTER 111, SECTION 70E or resident; (f) upon request, to receive from a person desig- “‘Facility’ shall mean any hospital, institution for the nated by the facility any information which the care of unwed mothers, clinic, infirmary maintained facility has available relative to financial assis- in a town, convalescent or nursing home, rest home, or tance and free health care; charitable home for the aged, licensed or subject to (g) upon request, to inspect his medical records and to licensing...; any state hospital...; and any private receive a copy thereof, the fee for said copy shall county or municipal facility.” be determined by the rate of copying expenses; (h) to refuse to be examined, observed, or treated “The rights established... shall apply to every by students or any other facility staff without patient or resident in said facility. Every patient or resi- jeopardizing access to psychiatric, psychologi- dent shall receive written notice of the rights established cal, or other medical care and attention; . . . upon admittance into such facility....In addi- (i) to refuse to serve as a research subject and to refuse any care or examination when the pri- tion, such rights shall be conspicuously posted in said mary purpose is educational or informational facility.” rather than therapeutic; (j) to privacy during medical treatment or other ren- “Every...patient or resident...shall have, in addi- dering of care within the capacity of the facility; tion to any other rights provided by law, the right to (k) to prompt life-saving treatment in an emer- freedom of choice in his selection of a facility, or a gency without discrimination on account of physician or health service mode.” economic status or source of payment and without delaying treatment for purpose of “Every...patient or resident...shall receive from a prior discussion of the source of payment person designated by the facility an itemized bill unless such delay can be imposed without reflecting laboratory charges, pharmaceutical charges, material risk to his health, and this right shall Patients’ Rights———1221

also extend to those persons not already • Upon request, to obtain an explanation as to the patients or residents of a facility if said facil- relationship, if any, of the facility to any other health ity has a certified emergency care unit; care facility or educational institution insofar as said (l) to informed consent to the extent provided by law; relationship relates to his/her care or treatment; (m) upon request to receive a copy of an itemized • To obtain from a person designated by the facility bill or other statement of charges submitted to a copy of any rules or regulations of the facility any third party by the facility for care of the that apply to his/her conduct as a patient or resident; patient or resident and to have a copy of said • Upon request, to receive from a person designated itemized bill or statement sent to the attending by the facility any information that the facility has physician of the patient or resident; and available relative to financial assistance and free (n) if refused treatment because of economic status health care; or the lack of a source of payment, to prompt • Upon request, to inspect his/her medical records and safe transfer to a facility which agrees to and to receive a copy thereof in accordance with receive and treat such patient.” Chapter III, Section 70, of the Massachusetts General Laws, and the fee for said copy shall be “Any person whose rights under this section are vio- determined by the rate of copying expenses; lated may bring in addition to any other action allowed • To refuse to be examined, observed, or treated by by law or regulation, a civil action.” students or any other facility staff without jeopar- dizing access to psychiatric, psychological, or other The Massachusetts statute also establishes patients’ medical care and attention; • rights in the doctor-patient relationship that mirror To privacy during medical treatment or other ren- those enumerated above. dering of care within the capacity of the facility; • To prompt, life-saving treatment in an emergency As a result of the various state and federal laws defin- without discrimination on account of economic sta- ing “patients’rights,” hospitals have made public, through tus or source of payment, and without delaying postings and pamphlets, their own patients rights policies. treatment for purposes of prior discussion of the A typical policy, developed by the Spaulding Rehabilita- source of payment unless such delay can be tion Hospital in Boston, is set forth as follows. imposed without material risk to his/her health, and this right shall also extend to those persons not already patients or residents of a facility if said SPAULDING REHABILITATION facility has a certified emergency care unit; HOSPITAL PATIENT BILL OF RIGHTS • Upon request, to receive a copy of an itemized bill or other statement of charges submitted to any “Spaulding Rehabilitation Hospital is committed to third party by the facility for care of the patient or providing you with quality care and respecting your resident and to have a copy of said itemized bill rights as a patient. The hospital completely supports or statement sent to the attending physician of the the law known as the Massachusetts Patient’s Bill of patient or resident; Rights. The following are your rights as a patient, estab- • If refused treatment because of economic status or lished by the provisions of that law. the lack of a source of payment, to prompt and safe “Every patient or resident shall have the right: transfer to a facility which agrees to receive and treat such patient. Said facility refusing to treat such a • Upon request, to obtain from the facility in charge patient shall be responsible for ascertaining that the of his/her care the name and specialty, if any, of the patient may be safely transferred; contacting a facility physician or other person responsible for his/her willing to treat such patient; arranging for transporta- care or the coordination of the care; tion; accompanying the patient with necessary and • To confidentiality of all records and communica- appropriate professional staff to assist in the safety tions to the extent provided by law; and comfort of the transfer, assure that the receiving • To have all reasonable requests responded to facility assumes the necessary care promptly, and pro- promptly and adequately within the capacity of vide pertinent medical information about the patient’s this facility; condition; and maintaining records of the foregoing. 1222———Pedagogy and Curriculum Design

The physician shall provide every patient or following: Disability and Literature; Disability in resident in the facility essentially the same rights.” American History; Cultural Studies/ Body Studies; Extraordinary Bodies; Disability and Culture: Race, There is a relationship in a rehabilitation hospital Gender, and Sexuality; Women and Disability; Disabil- between dignity and rights. It is often said that one ity in Film; and Crip Cultures & Disability Studies. must “check one’s dignity at the door” when checking Judging by the titles alone, this sample evidences a into a hospital. The personal privacy of people in the strong bias toward the cultural branch of disability stud- hospital setting is frequently compromised during the ies, but undoubtably, titles can be deceiving. provision of hospital services. Respecting the dignity of people in the hospital setting, through the exercise ACADEMIC COURSES of courtesy, confidentiality, compassion, and the empow- AND PROGRAMS ering of patients to make informed choices regarding their treatment, is essential in ensuring the rights of all In many universities, the process for new course people in the rehabilitation setting. creation can impede the development of new courses if it threatens existing, state-approved, or professionally —Elmer C. Bartels sanctioned content. However, courses can be updated See also Americans with Disabilities Act of 1990 (United States); with little or no fanfare and pasted into an existing Decision Making; Rehabilitation Act of 1973 (United States). course title. For example, Normality, Abnormality, and Society, offered in the philosophy department at the Further Readings University of Hawaii, Hilo, is suggestive of the first Americans with Disabilities Act of 1990. Retrieved December 25, wave of disability studies when professionals set the 2004 (www.usdoj.gov/crt/ada/pubs/ada.txt). parameters for inquiry into disability informed by a Massachusetts General Laws, Chapter 111, Section 70E. prevention/treatment/remediation paradigm. However, Retrieved December 25, 2004 (www.mass.gov/legis/laws despite its retrograde title, the course, taught by Ron A. /mgl/111–70e.htm). Section 504 of the Rehabilitation Act of 1973. Retrieved Amundson, a philosopher of science and a wheelchair December 25, 2004 (www.section508.gov/index.cfm?Fuse user, is described in the course catalog (2002–2003) as Action=Content&ID=15). a philosophical study of how human diversity interacts with social norms. Topics include health and illness, ᨘ disability, gender, and sexual orientation. Perspectives PEDAGOGY AND from biology and the social sciences are included in a CURRICULUM DESIGN study of how beliefs about normality vary between cul- tures, change through time, and affect human relations. Across the United States, disability studies courses continue to multiply in academic departments within The course is not included in a special disability pro- institutions that have established disability studies gram, nor is it part of a cluster of course offerings programs and those in which program development designed to provide a closer examination of disability is not currently a goal. Course offerings are found in informed by a disability studies. Like many of the new the humanities, the social sciences, medicine, applied disability studies courses that dot the academic land- health and rehabilitation sciences, psychology, scape, this course stands alone in a traditional academic philosophy, architecture, law, policy, and business. Until department. recently, disability-related content was the exclusive Where efforts are under way to develop disability domain of medicine, education, and the social sciences. studies programs, course offerings are plentiful and Infused by the current wave of disability studies in the more diverse. Community Planning and Public Policy humanities, disability is now more likely to be under- for Disability, offered through the Department of Environ- stood as a product of cultural rather than purely bio- mental Design at the University of California, Berkeley, logical forces. Recent course offerings include the explores what society and local communities can do to Pedagogy and Curriculum Design———1223 address the needs of citizens with disabilities specific to representations of disabled people wherever they policies, programs, and local planning. Although the exist. At the center of many new courses in academe content is shaped by cultural awareness and more pro- are efforts to disrupt pity, fear, loathing, and overly gressive interpretations of disability, the course has as romanticized and uninterrogated inspirational depic- its foci the economics of disability and the politics of tions of disability. Course descriptions are peppered producing change, with special attention to transporta- with terms such as excavate, examine, explore, inves- tion, housing, public facilities, independent living, tigate, interrogate, probe, appropriate, and so on. employment, and income policies, with content that Moreover, when the content is organized according to reflects the perspectives of disabled and nondisabled the strictures of cultural studies as a “strategic prac- members of society. Although the disability studies con- tice,” risk taking and discomfort are likely to follow, centration to be offered at the undergraduate level in according to the critical theorist, Lawrence Grossberg— American studies at the University of California, in short, to radicalize rather than romanticize the con- Berkeley has yet to be finalized, a wide range of inter- tent. Demands for authenticity remain a critical fea- disciplinary courses already exist. Because Berkeley ture of the evolution of disability studies curricula. shares a long history of involvement with the disabled As a consequence, it is not uncommon to find disclo- community, many courses were offered well in advance sure as a unique feature of the pedagogy of disability of the recent efforts to create an undergraduate minor in studies in academe—with both sides weighing in on disability studies. the issue. An early framing of the disclosure issue appeared in the Chronicle of Higher Education in 1999, INFLUENCES ON PEDAGOGY when Leonard Cassuto posed the question, “Whose AND CURRICULUM DEVELOPMENT Field Is It, Anyway? Disability Studies in the Academy.” The essay sparked a healthy debate among scholars In the example of disability studies, two significant relative to the issue of disability insider/outsider status influences on pedagogy and curriculum design are (1) and who is qualified to speak about disability. It was a the perspective on disability offered and (2) the con- timely exchange that provided the occasion to map text in which the course is offered. When the pers- disability studies as a field and, more subtly, to fore- pective on disability is informed by cultural criticism shadow a few of the ruptures in academic traditions and theory, it is useful to consider its relationship to likely to follow. Among the most challenging disrup- women’s studies, African American studies, and queer tions within the academy at the practice level include studies, particularly as each emerged in the era of civil those relative to hiring and promotion, instruction, rights movements. However, arguing against the publication, student services, and physical plant design impulse to add disability to the “roster of the disen- and construction. franchised,” Lennard J. Davis (2002) contends that In less than three years, issues of pedagogy and because the category of disability is porous, it poses a curriculum development have become increasingly significant challenge to identities that seem fixed. Thus, more complicated and turbulent. The recent publica- increasingly disability studies scholarship has moved tion of Disability Studies, Enabling the Humanities away from particular claims to status as “another other,” provided the occasion for Georgina Kleege and Brenda opting instead to unsettle fixed identity categories Brueggemann to consider their own classroom context through a more complicated critique informed by dis- and their teaching of disability content as professors ability studies. with visible disabilities. Kleege voiced resentment over the assumption that her own personal experience GOALS AND OBJECTIVES FOR “augments” her teaching and, more pointedly, that DISABILITY STUDIES CURRICULA there is pedagogic power in exposing her disability to nondisabled students. Her refusal turned on the unin- In its most simple statement of purpose, the goal for a tended effects of naive or well-intentioned approaches disability studies curriculum is to unpack inadequate that cast her as the “goodwill ambassador sharing the 1224———Pedagogy and Curriculum Design quaint beliefs and customs of my alien world.” It is those institutions that embrace a pedagogy of inclu- also through her candid exchange with a student sivity herald disability studies as more than academic depicted in this essay that Kleege articulates the antics in pursuit of another other; rather, these institu- development “over time” of her own disability iden- tions recognize the importance of reimagining the ways tity. The impulse to incite activism within a disabled disability affects all our lives. In contrast, institutions community was revealed to be a latent issue—an that practice a pedagogy of exclusivity endorse tradi- insight that only insiders can substantively debate—and tions whereby elitism, entitlement, exclusion, and privi- one with important implications for K–12 curriculum lege prevail. Knowledge is more likely inherited rather development. In a variation on us/them positioning than interpreted, leaving little appreciation for reflection still erupting in academe, Brueggemann turns the issue on the recent ideological shifts that inform disability on its head to reveal that the “sword cuts both ways.” studies. That is not to say that disability studies courses Initially exasperated by students in her freshman com- would not, on occasion, appear in such institutions; position class and their resistance to get “in” her disabil- novelty or fad-driven courses advance the economic ity content, Brueggemann recounts her own resistance interests of all institutions. But it is to remind us that to get “in” their abilities. Acknowledging the pedagogic there are real and measurable political implications for tensions and reflecting upon them, both Kleege and offering disability studies in the first place. Disability Brueggemann informed their own practices and raised studies will be greatly undermined as a viable academic new points to debate as a field. pursuit if institutions fail to simultaneously engage rig- Arguing against the tradition of silence on the issue orous self-examination of existing policies relative to of pedagogy among cultural studies theorists, Henry access and the inclusion of disabled people in the acad- A. Giroux (1995) cited academic elitism, the rewards emy regardless of their status as faculty, student, staff, of disciplinary policing, reluctance to cross academic or visitor. A pedagogy of inclusivity would pursue fair borders, careerism, and competitiveness as the some representation of disability not only in the curriculum of the barriers to probing the relationship between but throughout the university: indeed, no minor under- pedagogy and cultural studies. Composition studies, taking. Giroux contends, is one of the few fields in the human- ities to seriously contend with pedagogy. However, it is clear that many disability studies scholars have DISABILITY STUDIES IN THE broadened the debate of what is political at the heart CONTEXT OF K–12 EDUCATION of pedagogy and curriculum development. Particular In K–12 educational settings, where disabling claims to postdisciplinary knowledge is not the ulti- constructions are manufactured and conveyed through mate goal for disability studies, at this juncture; there pedagogy and practice institutionally endorsed by remains too much to be learned from the lives of real local, state, and federal mandates, the context is thick people articulating and renarrating lived experience with a pedagogy that pathologizes difference. Despite within rather than outside history. the growing legitimization of disability studies in higher education, many teachers are unfamiliar with DISABILITY STUDIES AND the field and its implications for K–12 education. THE PEDAGOGY OF INCLUSIVITY Were this encyclopedia entry written 10 years into the future, it would include samples drawn from K–12 As academic courses continue to develop and pro- school-based curriculum projects in which disabled grams gain in popularity, sustained success turns on youth spliced together lived experience, dreams, the pedagogy of inclusivity as the catalyst to sustain desires, and reflections on their subject positions in explorations into disability studies; to encourage enact- schools. The goal would be nothing short of locating ment of policies that affect enrollment, hiring, access, students’ experience within rather than outside history and course offerings; and to foster the continuous exam- and, as a consequence, substantively reshaping the ination of what counts as knowledge. At the present, extant curriculum. Pedagogy and Curriculum Design———1225

Given that education, health, and human services are situated at the exact opposite extreme and enroll are the primary service providers for the disabled far fewer disabled students—and, for the most part, community and in schools, an important concern for only those likely to succeed. professionals might be to address why the most recent “Integrating Disability Studies into Secondary wave of disability studies has emerged from within Education,” a five-week summer institute for secondary the humanities and outside the professions. Or, how teachers, was cosponsored in 2003 by the University of can this new wave of disability studies inform and Illinois, Chicago and the National Endowment for the shape the education and training of future educators Humanities. Both general and special educators were and school-based professionals? More to the point, treated to a rigorous course of study that stood quite a how might this scholarship influence disabled field from the usual technicist fare that drives in-service students in K–12 educational settings to locate them- “training” for teachers. Exposure to new ways to imag- selves in the curriculum in ways that have yet to ine the lives of their disabled students, informed by a emerge? Given that the professions have a high stake broad survey of humanities content and interactions in preserving status quo assumptions about disability with disabled artists and performers, led many of the as pathology, it is highly unlikely that such questions participants to confront, for the first time, the obvious will be considered in the absence of rigorous self- contradictions in K–12 education as it currently exists. engagement with interdisciplinary disability studies For these teachers, five weeks of interactions with and collaborative planning initiatives. The National wholly new content that, without malice, served to Endowment for the Humanities (NEH) has taken the underscore the inadequate representation of disability lead to provide funding for such initiatives discussed in their teaching and daily practice was just a begin- below. ning. Once these educators returned to their schools, the hard work began as they continued to deconstruct and critique disability in the schooling context. Again, Emerging K–12 Initiatives what became apparent was that pedagogy and curricu- Recognizing the value of cross-disciplinary and lum development relative to disability studies in the interdisciplinary scholarship, the NEH has previously instance of K–12 settings are quite distinct from that sponsored focus grants and summer institutes for in postsecondary settings. Working in isolation to higher education faculty and for secondary educators reassemble new images of disabled people and their that focused on disability studies. Although these are own students to reflect newly acquired political under- quite recent initiatives, it is clear at this stage that standing of disability proved a formidable challenge. efforts to import coursework from academe into K–12 Embedded in relationships with content, processes, and contexts will prove challenging unless the disjuncture policies over which they exert little authority, K–12 between these two competing contexts is explored educators face an incredible responsibility when toward ends that promote reciprocal gains. A attempting to dissolve the boundaries between school- Collaborative Inquiry on Understanding Disability ing and popular culture, inherited social scripts, and in Secondary and Post-Secondary Settings (2000) the limits of their own professional knowledge base. attempted to identify intersecting interests toward Only through persistence and a long view of the change the realization of reciprocal goals, but what became process can K–12 educators advance disability studies apparent was how much a difference disability can in their everyday practice. Educators’ attempts will be make depending on one’s context. K–12 teachers greatly enhanced if postsecondary faculty maintain out- work in contexts in which disability is more than a reach to K–12 contexts as a necessary component of theoretical concern, and although many are unaware academic disability studies. of disability studies scholarship, their instructional —Linda Ware context continues to include greater numbers of disabled students. This distinction served to complicate the pro- See also Disability Studies; Education and Disability; Main- ject of articulating shared goals as most universities streaming; Special Education. 1226———Pediatric Rehabilitation

Further Readings In a formal sense, pediatric rehabilitation is Baker, Bernadette. 2002. “Disorganizing Educational Tropes: comparatively young. It falls against the backdrop of Conceptions of Dis/Ability and Curriculum.” Journal of the development of pediatrics from the mid-nineteenth Curriculum Theorizing 18(4): 47–79. century and the development of rehabilitation largely Berube, Michael. 1996. Life as We Know It: A Father, a Family and over the last two-thirds of the twentieth century. an Exceptional Child. New York: Vintage–Random House. Western medical systems have identified the Cassuto, Leonard. 1999. “Whose Field Is It Anyway? Disability unique aspects of pediatric conditions of disability Studies in the Academy.” Chronicle of Higher Education 45(28): A60. from their inception. Certainly, case examples of A Collaborative Inquiry on Understanding Disability in children with disabilities and the adults they became Secondary and Post-Secondary Settings. 2000. National exist from at least ancient Egypt. Hippocrates, Galen, Endowment for the Humanities Lecture Series, University of Soranus, and other ancient authors identified certain Rochester, Rochester, NY. conditions of a disabling nature in children and Davis, Lennard. J. 2002. Disability, Dismodernism and Other offered interventions appropriate to the time. In the Difficult Positions. New York: New York University Press. Giroux, Henry A. 1995. “Beyond the Ivory Tower.” Pp. 238–258 Middle Ages, hydrocephalus, or swelling of the head, in Higher Education under Fire: Politics, Economics, and the in newborn infants was recognized and treated by Crisis of the Humanities, edited by Michael Berube and Cary surgeons. With the earliest texts devoted exclusively Nelson. New York: Routledge. to children’s medical disorders, disabling conditions Grossberg, Lawrence, Cary Nelson, and Paula Treichler. 1992. were identified and explained, and cures were sug- Cultural Studies. London: Routledge. gested from Thomas Phaire’s The Boke of Chyldren “Integrating Disability Studies into the Humanities.” 2003. University of Illinois Chicago, Department of Disability and (1544) onward. However, it was not until the aggrega- Human Development. Retrieved May 5, 2005 (www.uic tion of children’s care in a coherent way, at the begin- .edu/depts/idhd/DS/neh/). ning of the nineteenth century, that Western medicine Snyder, Sharon L., Brenda J. Brueggemann, and Rosemarie began to identify and react to challenges peculiar to Garland-Thomson. 2002. Disability Studies: Enabling the children with disabilities in an articulated fashion. Humanities. New York: Modern Language Association. For much of its history, pediatric rehabilitation was Ware, Linda. 2001. “‘Writing, Identity, and the Other’: Dare We Do Disability Studies?” Journal of Teacher Education 52 (2): closely related to institutions of chronic, “inpatient” 107–123. care. In Paris, for example, the Hôpital des Enfants ———. 2003. “Working Past Pity: What We Make of Disability Malades, founded in 1802, was the first hospital ded- in Schools.” Pp. 117–137 in Inclusion, Participation and icated to sick children, using the medical model. In Democracy: What Is the Purpose? edited by Julie Allan. this way, it was distinct from other institutions, which Dordrecht, the Netherlands: Kluwer. cared for abandoned, poor, or orphaned children. Within its walls, children with acute conditions were gradually separated from those with chronic condi- ᨘ PEDIATRIC REHABILITATION tions. Among the latter, those with conditions such as spinal tuberculosis, paralyses, Huntington’s chorea, The term pediatric refers to medical aspects of children and skeletal anomalies gradually received medical and rehabilitation to the medical field of helping people care intended if not to cure then to improve the qual- with disabilities acquire greater function. Both are ity of the child’s functional life. terms of professionalization, in which a field of train- Clearly, part and parcel of the institutionalization ing, research, and patient care has been assembled by process was segregation, social control, and stigmati- its practitioners and recognized by society at large. As zation. Children with chronic conditions, deemed a consequence, this entry refers primarily to the pro- amenable to intervention, were taken off the streets fession, which cares for children with disabilities using and away from begging for charity. In this sense, medical techniques, following a primarily first world, state-sponsored charity for children supplanted spon- modern model. In other cultures and at other times, care taneous, private intervention. But the impact on the for children with disabilities has been provided. children, including separation from able-bodied peers, Pediatric Rehabilitation———1227 enforced perception of difference; usually, isolation symposia for policy creation and created a “Children’s from family was nearly complete. From within the field Charter” (1928) to begin to identify the needs of of pediatric rehabilitation, these effects have been children with disabilities, under the auspices of physi- historically downplayed in comparison to the described cians interested in their care. Following his own bout benefits of concentrated resources, efficiency, and with poliomyelitis, Franklin D. Roosevelt helped opportunities for learning. Collecting such children create the private philanthropy, the National Founda- together in inpatient and outpatient settings fostered tion for Infantile Paralysis (NFIP), later to become the the growth of expertise in their medicalized condi- March of Dimes. From its inception in 1938, the NFIP tions and care. Thus, pediatrics, pediatric orthopedics, helped fund both care and research into pediatric reha- pediatric rheumatology, pediatric neurology, pediatric bilitation. The impact of sequential epidemics of polio neurosurgery, pediatric psychiatry, pediatric rehabili- continued to bring the care of children with chronic tation, pediatric occupational and physical therapy, conditions to the attention of reformers, government and other specialties were born and grew. agents and agencies, and health care practitioners. In the United Kingdom, as in France, figures such In 1947, physical medicine and rehabilitation as William John Little identified conditions such as (PM&R) as a field was formally recognized with its own cerebral palsy with more or less clinical coherence. certification board. Dr. George C. Deaver, commonly This process of medicalizing conditions—identifying identified as the first pediatric physiatrist, influenced a constellation of signs and symptoms and then track- training, certification, and philanthropy to aid in the care ing the natural history of those signs and symptoms of children with disabilities from his professorship at from origin to conclusion under a medical rubric— New York University and the (Rusk) Institute of Reha- allowed physicians to gain control of knowledge bilitation. In 1946, he organized the Advisory Council to about the children with these conditions. Similarly, the National Easter Seal Society. In these early stages, conditions from meningomyeloceles to traumatic Deaver was joined by specialists from child neurology brain injuries to learning disabilities have been identi- (such as Bronson Crothers), neurosurgery, orthopedics, fied, catalogued, and allocated medical resources for and pediatrics to form the American Academy for intervention and research. Cerebral Palsy (later the American Association for The multidisciplinary growth of the care of Cerebral Palsy and Developmental Medicine) in 1947. children with disabilities is exemplified by figures who Deaver and others subsequently fostered fellowships in wrote pioneering works on their conditions. As well pediatric rehabilitation in the 1950s. In these early years, as English surgeon William John Little, in Germany, training was often received as much from the therapists orthopedist Jacob von Heine (1800–1879) worked working with the children directly as from the senior with children with paralyses and poliomyelitis, writing physicians “directing” their care. on their conditions in 1860; in Vienna, psychiatrist With further disparate developments in funding, Sigmund Freud (1856–1939) worked with children research, and care models, the fields of pediatrics with cerebral palsy (1897) prior to developing psycho- and PM&R began to establish joint residencies in the analysis; and in the United States, the seminal figure 1970s on an ad hoc basis. Similarly, PM&R programs in internal medicine, William Osler (1849–1919), wrote created one-year fellowships for those trained pri- an observational study on children with cerebral palsy marily in adult PM&R to specialize in the care of (1889) and later became the fourth president of the children. By the 1980s, numbers of physicians identi- American Pediatric Society. Beyond the frame of med- fying themselves as primarily pediatric rehabilitation icine proper, other parts of society in other countries specialists reached sufficient levels to form a Pediatric followed the French government in allocating central Rehabilitation Special Interest Group (SIG) in the resources to the care of children. American Academy of Physical Medicine & Rehabili- In the United States during the 1920s and tation (AAPM&R). early 1930s, the White House advanced elements of a Over the past 30 years, pediatric rehabilitation children’s agenda; the presidents both convoked has become a more formalized endeavor. Today, in the 1228———Pediatric Rehabilitation

United States, for example, one can enter pediatric neuromuscular disorders, cancers, and a variety of PM&R from more general training in PM&R (largely others; in addition, many pediatric conditions, including adult) or a dual background in pediatrics and PM&R. those related to sports, are treated in outpatient clinics Professional political movements over the past 20 years by rehabilitation personnel. There is much room for have resulted in a subspecialty examination process growth, quite apart from patient numbers. begun in 2004 under the aegis of the American Board As in many specialties, pediatric rehabilitation, of PM&R and with the acceptance of the American as a concept, may be effectively applied to many con- Board of Pediatrics. Other countries vary from this ditions not now generally using it. Thus, standard model, sometimes markedly. treatments do not apply full rehabilitation models to From the point of view of the trappings of profes- children recovering from cardiac surgery as they sionalization, pediatric rehabilitation is a comparative would in adults. Newborns with complex conditions newcomer to the world of medicine. The first journal are only rarely specifically targeted for coordinated confining itself to the topic is in its eight-volume rehabilitative care beyond the intensive care unit. But Pediatric Rehabilitation. No formal and independent expectations and market forces are gradually changing organizations exist solely to sponsor pediatric rehabil- these limits. Similarly, rehabilitation as a field grew itation, although there are professional organizations out of therapeutic associations often viewed as “mar- devoted to individual conditions, such as the American ginal” in the late nineteenth century. As a medical spe- Academy of Cerebral Palsy, or sections of umbrella cialty today, it often is amenable to alternative forms of organizations that address pediatric issues, such as the treatment. This is particularly true as conditions treated Pediatric SIG of the AAPM&R. by rehabilitation practitioners rarely have “cures.” Providers of pediatric rehabilitation include Pediatric rehabilitation uses tools—including reha- physical, occupational, and speech language thera- bilitation; physical, occupational, and speech-language pists, nurses, social workers, play therapists, teachers, therapies; gait analysis; casting; bracing; orthoses and physicians, and others. In many of these fields, some protheses; electrodiagnosis; physical modalities; phar- formal training in pediatric rehabilitation is provided, maceuticals; and injections—to assess and improve the but “specialization” occurs with experience and clini- overall function of children. While the tools are simi- cal setting. For physicians, that specialization previ- lar to those of rehabilitation physicians for adults, the ously occurred with similar on-the-job training and perspective is often different. In part, this is because inclination. However, increasing recognition of the of the neurodevelopmentally moving target of the child. specific nature of such work has promoted certifica- Unlike adults, whose physical, mental, and sensory devel- tion in many fields. As in all matters with economic opment has plateaued in a gross sense, children are still consequences, supply and demand in the marketplace actively, often aggressively, changing in those respects. change the value of certification. In the United States, Thus, an adult with a low-level cervical spinal cord while there are fewer children overall with rehabilitation injury would learn to operate a wheelchair, transfer needs compared to adults, there are far fewer specifi- himself or herself, and so on. For a child, depending on cally trained providers. Those with partial training are his or her age, this might at first be difficult, but then still very much in demand. increasingly possible, and then be complicated by While there is a core of conditions generally treated growth and the shifting proportions of the child’s body by pediatric rehabilitation professionals, concentrat- parts. Pediatric rehabilitation providers have to take ing on physical disabilities, practitioners often apply account of such changes. rehabilitation concepts to almost any condition, which In addition, that children are still being educated might consequently be improved. Conditions tradi- by society—in a formal school setting—requires that tionally falling under the purview of pediatric rehabil- pediatric rehabilitation providers interact with itation include cerebral palsy, neural tube defects (e.g., teachers in a fashion that their adult counterparts spina bifida or meningomyeolocele), traumatic brain usually do not have to do. In one sense, this is a salutary injuries, amputations, burns, congenital conditions, strokes, symbiosis, as the educational program can be changed Peer Support———1229 to take account of static or evolving impairments. On Gritzer, Glenn and Arnold Arluke. 1985. The Making of the other hand, it adds a layer of complexity onto a Rehabilitation: A Political Economy of Medical Specialization, rehabilitative plan. 1890–1980. Berkeley: University of California Press. Hamburger, Ove. 1911. “Un cas de paralysie infantile dans l’an- Families also play a huge role in pediatric rehabili- tiquité.” Bulletin de la Société Française d’Histoire de la tation. While parents can sometimes need as much Médecine 10:407–412. support as the child, they are usually extremely strong Helders, P. J., R. H. Engelbert, J. W. Custers, J. W. Gorter, T. advocates and caregivers. In current clinical models, Takken, and J. van der Net. 2003. “Creating and Being the pediatric rehabilitation specialists are supportive Created: The Changing Panorama of Pediatric partners to the child and family rather than directors Rehabilitation.” Pediatric Rehabilitation 6:5–12. Molnar, Gabriella E. and Michael A. Alexander. 1999. Pediatric of care. Siblings, like their parents, also need atten- Rehabilitation, 3d ed. Philadelphia: Hanley & Belfus. tion, which can be hampered by the physical and emo- Newacheck, Paul W., Moira Inkelas, and Sue Kim. 2004. “Health tional demands of a child with a disability. Services Use and Health Care Expenditures for Children Research into exclusively pediatric rehabilitation with Disabilities.” Pediatrics 114:79–85. conditions and settings is only slowly growing. Health Perrin, James M. 2002. “Health Services Research for Children services research, for example, has been struggling with Disabilities.” Milbank Quarterly 80:303–324. Soroker, Nachum and Haim Ring. 2004. “Retrospective Trends to identify care delivery mechanisms designed specifi- in Current P&RM Research as Reflected in the 2nd ISPRM cally for this sector despite exclusion by adult model- World Congress (Prague, 2003).” Disability and Rehabilitation ing. Clinical research also has met challenges. Since the 26:687–693. numbers of children involved are fewer than adults Weisz, George. 2003. “The Emergence of Medical Specialization and the reimbursement for their care, at least in the in the Nineteenth Century.” Bulletin of the History of Medicine United States, is less consistent, research has some- 77:536–575. times lagged. As is true for its adult cognate, pediatric rehabilitation has also struggled to identify means to measure outcomes of children treated with rehabilita- ᨘ PEER SUPPORT tion techniques. A further challenge is the relative infre- quence of such pediatric conditions. Low numbers Peer support involves a process of giving and make it difficult to generate statistical proof of treat- receiving help among individuals who are in similar ment efficacy. Nevertheless, taking advantage of related situations. A peer can be defined as a person of equal basic sciences, pediatric rehabilitation internationally standing with another—someone who is equal to continues to doff its empirical roots and to seek out the- another person in some important respect such as age, oretical underpinnings for functional intervention and social class, or experience. A peer can also be defined evaluations of outcomes. In this goal, pediatric reha- as a friend or companion. Peer support can vary bilitation is following the paths of previous specialties greatly from one circumstance to another, but central from ophthalmology to adult rehabilitation. to peer support is the ability to understand someone else’s situation because of some shared experience. —Walton O. Schalick III Through this common understanding, peers are able See also Bronson Crothers; Cerebral Palsy; Childhood, Youth, and to share stories, exchange information, and often, Adolescence; Physical Medicine and Rehabilitation. once the relationship has become solid enough, challenge each other when they are in conflict. Peer Further Readings support stresses experiential and not professional Cooter, Roger. 1999. Surgery and Society in Peace and War: knowledge. The very value of peers is that they do not Orthopaedics and the Organization of Modern Medicine, have professional training or use professional jargon: 1880–1948. London: Macmillan. They speak from their experience and from a similar Geller, Gail and Lana R. Warren. 2004. “Toward an Optimal Healing Environment in Pediatric Rehabilitation.” Journal status. of Alternative & Complementary Medicine 10(Suppl. 1): The relationship between peer support and dis- S179–S192. ability involves discussing the history of peer support; 1230———Peer Support how peer support occurs across types, structure, and In the United States, the revolutionary thought of settings; and the benefits and conditions necessary for the 1960s continued to foster ideas related to peer sup- peer support to be effective. port, as a rise in service delivery by paraprofessionals and nonprofessionals increased interest in the concept HISTORY OF PEER SUPPORT of peers supporting each other. An excellent exam- ple of this is the Center for Independent Living The concept of peer support in the United States can (CIL) movement. Led by Ed Roberts in Berkeley, be traced back to the establishment of Alcoholics California, a group of students with disabilities Anonymous in 1935, which was formed under the organized to pressure the University of California at assumption that persons who experienced and over- Berkeley to become more accessible and to provide came alcoholism would be most effective in assisting more supports for students with disabilities. In 1972, others who were trying to do the same. The concept the Berkeley Center for Independent Living was of peer support inherently allows individuals to be founded as a community-based organization, with seen as resources. Specific to the area of disability, peer support as one of its central values. Today, more peer support offers an alternative to traditional ways than 400 CILs exist around the United States, and peer of viewing disability as a deficit or problem in need support remains a core service for most local chapters. of treatment. Because of societal discrimination, During the 1980s, peer support continued to make disability can often be an isolating social status. The its mark, as seen through the development of the availability of peer support can provide an antidote Mood Disorders Association, a nonprofit, peer-based to stigma through affirming the very characteristic organization that was started in 1982 by and for men- for which individuals with disabilities have often tal health consumers. As another example, Americans been disrespected. Furthermore, peer support can be Disabled for Accessible Public Transit (ADAPT) was an empowering experience for those who have faced founded in 1983 to promote advocacy in the disability discrimination and marginalization. Such a relation- community through civil disobedience to achieve the ship can provide a positive and/or critical alternative goal of public accessibility. Many other large organi- way of looking at the world. For these reasons, peer zations for people with physical disabilities, such support has emerged as a central guiding force in as the National Spinal Cord Injury Association and many disability-related organizations and services. chapters of the Paralyzed Veterans of America, have Peer support relationships involve people with disabil- made peer support one of their major activities. ities or family members or caretakers of people with Peer support has been a strong component of disabilities. independent living organizations around the globe. For Peer support has grown most visibly through the example, independent living organizations in Sweden formation of a number of disability-related organiza- and Canada have used peer support as a mechanism tions across the United States. For example, peer for bringing people with disabilities closer to inde- support has been the foundation of the self-help pendence. Similar to the United States, international movement and, more specifically, organizations such peer support developed strongly in the 1960s and as Recovery Incorporated, a nonprofit peer-based 1970s. For example, in 1962 in the United Kingdom, organization that began facilitating weekly support a group of parents of children with disabilities formed group meetings for people with mental illness in the Society for Autistic Children, which later became 1937. As another example, United Cerebral Palsy was the National Autistic Society, and includes a tele- created as an organization in 1949 when two families phone support service for parents of children with with children with cerebral palsy came together to autism. In Australia, peer support was part of a larger create a network to allow families to stay together and community health movement during the early 1970s. improve the lives of children with disabilities. Support During this time, under the Whitlam administration, groups have been a core service of this organization as local community health projects were directly they strive to help families share resources. accountable to the communities they served. There Peer Support———1231 was community involvement at every level of service involve educational or recreational activities. Contact development and delivery. This involvement opened can also be less frequent and may involve a simple channels of communication among service providers, phone call whereby the supporter is simply “checking bureaucrats, and consumers in areas such as disability in.” Last, support can be shared over the Internet in the and mental illness. Founded in the 1970s, GROW is form of listservs, chat rooms, and other online commu- one example of such organizations that flourished and nities. Online support can be a particularly valuable presently runs peer-led groups for those with mental resource for people with disabilities who face barriers illness in many countries. More recently, peer support regarding physical accessibility, transportation, and has reached other nations such as Thailand, where, personal attendant care (for example, those who live in in 2000, people with disabilities were trained as peer rural communities). One peer-mentor program had a counselors. Thai individuals with disabilities have variety of mentors “on-call” for consumers to contact as continued with training that focuses on how to estab- needed. In contrast, one peer support group was more lish and maintain an independent living center. formally organized, as the group included two meetings each week. One meeting was structured by the group. TYPES OF PEER SUPPORT It included both time for each member to talk and also a facilitated discussion around some issue. The second Peer support can take multiple forms, including weekly meeting was a recreational activity. peer support provided on an individual basis and that provided in a group setting. Individual peer support SETTINGS OF PEER SUPPORT can include peer education, peer counseling, and peer- mentoring relationships. These relationships may Peer support in its many forms and with its many involve sharing similar experiences and offering advice structures can also be incorporated in a number of based on these experiences. As an example, individuals environments, including educational settings, employ- with newly acquired spinal cord injuries may serve as ment settings, rehabilitation hospitals, independent mentors to new patients, so that both can share emo- living centers, health promotion centers, and sup- tional experiences as well as information regarding ported living/supported housing settings. For resources they have attained since their injuries. example, one peer-mentor program, set up with indi- In contrast to individual approaches, peer support viduals with violently acquired spinal cord injuries, is groups are often composed of people with disabilities based in the rehabilitation setting. This program con- who have common difficulties. Created around com- sists of, among other things, recreational activities, mon core issues, these groups then meet regularly including wheelchair basketball, camping, and sail- to discuss their problems and strategies to deal with ing. As another example, one supported housing them. To provide an example, one peer support group program for individuals with HIV involved a series of among people with psychiatric disabilities announced groups. These groups were developed to focus on spe- that their group had two goals: serving as a source of cific needs, such as cooking, emotional and addiction friendships for participants and seeing that interper- recovery support, information sharing about oppor- sonal skills learned via the group process would tunistic infections, treatment protocols, and medica- generalize to other relationships beyond the group. tion and alternative holistic therapies. Needs were identified in the group setting, and all community STRUCTURE OF PEER SUPPORT members were asked to contribute to solving them.

Across these forms of peer support, the structure of peer BENEFITS OF PEER SUPPORT support relationships can also vary. Relationships can range from formal to informal and can occur across or The little research that has been conducted to evalu- within diverse programs. Regular contact between the ate peer support programs has found positive results. supporter and supported can occur face-to-face and may Broadly, peer support seems to benefit the people 1232———Peer Support being supported, those doing the supporting, and the As an example of the variety of benefits that broader community. In terms of individuals being sup- peer support can yield, one peer support program ported, a number of psychological effects have been among persons with psychiatric disabilities reported demonstrated. First, peer support in general seems to that participants maintained their independent or promote a sense of empowerment among the group of semi-independent living and increased their use of people with disabilities. When people are faced with a community resources. The participants also experi- stressful situation, especially when they acquire a new enced greater social support networks and social and disability, they prefer the company of those facing leadership skills. Furthermore, their likelihood of hos- the same stressful event. Peer support helps people pitalization decreased, and they reported high satis- feel validated when they are able to share emotional faction with the program. reactions with others having similar experiences. Benefits include that peer support is more cost- Furthermore, people are given the opportunity to learn effective than that provided by professionals. Peer sup- from the peer providing support. They are given the port also allows more people to receive assistance more chance to develop skills that have proven effective for frequently: Assistance becomes a part of individuals’ someone else in their life situation. They can also natural networks rather than something they receive learn to advocate for themselves and may experience only when going to see a professional in an office. enhanced feelings of self-worth because someone Though advantageous in many situations, effective similar cares about and understands their situation. peer supporters require adequate support themselves to Peer support may also help the peer doing the avoid burnout. Often, a strength of peer support is that supporting. In general, research conducted across a peers have not been formally trained as clinicians or variety of populations has found that helping others practitioners and therefore speak to their peers from their can help you. Specific to disability, peer supporters own experience. This strength also presents a limitation can experience a heightened sense of self-worth as in that they need to be supported in dealing with others’ they are able to share their valuable knowledge and problems, as this can be an overwhelming burden. presumably help someone else in the process. They Support can be provided to peer supporters in a number may also feel and explicitly acknowledge a strength of of ways, from structured contact with professionals to their disability (perhaps for the first time), as it has more informal contact with other peer supporters. given them the tools to assist someone else through a It is imperative that peer relationships, whether difficult time. Furthermore, peer supporters often feel individual or group based, are comfortable for all great satisfaction knowing they are helping someone involved and that they make individuals feel that it is else. This experience has also been cited as a catalyst acceptable to talk about their problems or sources of toward career development. stress. A supportive environment is key to an effective Finally, the broader community can benefit from peer support relationship. peer support in a number of ways. First, peer support Given the hundreds of millions of people with dis- can demonstrate to the community a positive con- abilities in the world and the limited number of pro- tribution that peers with disabilities can provide. fessionals, peer support is a vital resource for people Furthermore, it seems to be a mechanism for building with disabilities. Peer support helps people with dis- capacity for change. When people are sensitive to and abilities cope with everyday concerns, enabling them aware of common needs and common rights, they have to validate their strengths and to move forward to the opportunity to make appropriate social change; they improve their lives. As this review as shown, peer sup- can work together to develop appropriate solutions to port can take many forms, yield many benefits, and complicated social issues and problems. For example, lead to the development of advocacy efforts. advocacy groups can be built based on common inter- —Erin Hayes and ests and can evolve from peer support relationships and Brigida Hernandez groups. Advocacy groups facilitate change in certain areas. See also Advocacy; Empowerment and Emancipation; Leadership. People First®———1233

Further Readings 1 Speaking for ourselves Bitter, Grant B. 1977. “From Conflict to Coalition: Disability 2. Solving problems—making decisions Groups, Parents, Professionals.” Volta Review 79(5): 317–326. Coates, Dan and Tina Winston. 1983. “Counteracting the 3. Knowing our rights and responsibilities Deviance of Depression: Peer Support Groups for Victims.” 4. Contributing to our community Journal of Social Issues 39(2): 169–194. Crofts, Nick and David Herkt. 1995. “A History of Peer-Based ® Drug-User Groups in Australia.” Journal of Drug Issues Most People First groups elect officers to run their 25(3): 599–617. meetings and have facilitators or advisers who assist Curley, Daniel J. 1994. “An Approach to Supported Housing for group members. Facilitators help the group without People with Mental Illness and HIV Disease.” Psychosocial taking control. People First® groups work on a wide Rehabilitation Journal 17(4): 160–168. variety of issues, including closing institutions, hous- Fennell, Reginald. 1993. “A Review of Evaluations of Peer ing, employment, voting, and sexuality and social Education Programs.” Journal of American College Health ® 41(6): 251–253. relationships. People First groups fight prejudice and Hernandez, Brigida, Erin Hayes, Fabricio Balcazar, and discrimination against people with disabilities. They Christopher Keys. 2001. “Responding to the Needs of the also combat overprotection by parents and profession- Underserved: A Peer-Mentor Approach.” The Psychosocial als. Those who participate in People First® find that Process 14(3): 142–149. their lives are enriched. They have more friends and Locke, Don C. and Nancy A. Zimmerman. 1987. “Effects of Peer- colleagues to socialize with and help them to solve Counseling Training on Psychological Maturity of Black Students.” Journal of College Student Personnel 28(6): problems and meet individual goals. 525–532. Mead, Shery, David Hilton, and Laurie Curtis. 2001. “Peer PEOPLE FIRST® HISTORY Support: A Theoretical Perspective.” Psychiatric Rehabilitation Journal 25(2): 134–141. In 1968, a meeting was held in Sweden at a parents’ Wilson, Mary E., Sheila Flanagan, and Carol Rynders. 1999. “The organization for children with developmental dis- FRIENDS Program: A Peer Support Group Model for abilities. The organization had a motto—“we speak Individuals with a Psychiatric Disability.” Psychiatric Rehabilitation Journal 22(3): 239–247. for them,” meaning the parents spoke for their children. However, people with disabilities who attended the meeting wanted to speak for themselves. They started Websites their own self-advocacy group. Similar groups quickly Independent Living Institute, www.independentliving.org/tools spread to England and Canada. forpower/tools22.html In November 1973, individuals with disabilities Mental Health Consumer Net Connections, www.mentalhealth living at the Fairview Hospital and Training Center consumer.net/peer-support.html National Self-Help Clearinghouse, www.selfhelpweb.org/what in Salem, Oregon, attended a conference in British .html Columbia, Canada. The conference was organized and run the British Columbia ARC. The conference was for people with disabilities, but it was run by professionals. The group from Oregon wanted to start a self-advocacy ᨘ PEOPLE FIRST® group by having a similar conference, but they wanted it to be organized and run by people with disabilities. People First® is an international self-advocacy orga- They wanted support from professionals only when nization with chapters all over the world. People it was requested. During a meeting on January 8, 1974, First® groups are run by and for people with intellec- they discussed how to name their group. Everyone dis- tual disabilities to work on civil and human rights liked being called by negative labels such as “retarded,” issues. People First® groups are always led by people so they decided to call themselves “People First.” with intellectual disabilities. They have four guiding In October 1974, the first People First® Convention principles: was held in Oregon. It was attended by 560 people. 1234———Perl, Otto (1882–1951)

Within five years, Oregon People First® had 1,000 Websites ® members. People First groups also began in People First California, www.peoplefirstca.org/history.htm# Nebraska, Kansas, California, and Washington state. Beginning Self-advocates from 42 other states were seeking help People First Oregon, www.open.org/~people1/about_us_history in starting their own groups. The first international .htm self-advocacy conference was held in Tacoma, Washington, in 1984. International conferences have ᨘ since been held in London, England (1988); Toronto, PERL, OTTO (1882–1951) Canada (1993); Anchorage, Alaska (1998); and Author and cofounder of the Self-Help Northampton, England (2001). Alliance of the Physically Handicapped

CONCLUSION Otto Perl was a German author and cofounder of the Selbsthilfebund der Körperbehinderten (Self-Help As of 2004, there are People First® and self-advocacy Alliance of the Physically Handicapped) (1919–1931), groups in 43 countries with an estimated 17,000 the first emancipatory self-help organization represent- members. It has been estimated that there are more ing the interests of the physically disabled in Germany, than 800 self-advocacy chapters in the United States which was also called the “Otto Perl Alliance.” He was with a national organization called Self Advocates born on October 19, 1882, the son of a small farmer, Becoming Empowered (SABE). Although not all in the state of Saxony. With nine siblings, he grew up self-advocacy groups choose to call themselves in rather simple rural circumstances. People First®, this group continues to be a dynamic From the age of 13, he suffered from a stiffening of and visible arm of the international self-advocacy joints. In 1898, he began an odyssey through German movement. so-called invalid institutions and cripple homes. In —Pamela Block and 1919, he became part of a small circle of founders of Tia Nelis the Self-Help Alliance for the Physically Handicapped in Berlin. From 1922 until 1924, he was acting deputy

See also Advocacy; Citizenship and Civil Rights; Empowerment of this first organization to represent the interests of and Emancipation. people with birth defects and physical disabilities in Germany. After completing his studies at the gymna- Further Readings sium in 1919, he studied philosophy and economics in Berlin. In 1926, he lived in his own room for the Dybwad, G. and H. Bersani Jr., eds. 1996. New Voices: Self- Advocacy by People with Disabilities. Newton Upper Falls, first time in his life, in an institute in Nürnberg, and MA: Brookline. published his book, Krüppeltum und Gesellschaft im Goode, B. 1997. Beliefs, Values and Principles of Self-Advocacy. Wandel der Zeit (Crippledom and Society in Changing With contributions of Ake Johansson. Newton Upper Falls, Times). He fought against institutionalization and MA: Brookline. demanded the right for self-determination. However, Longhurst, N. 1993. The Self-Advocacy Movement by People with he limited his demand for education and job training Developmental Disabilities: A Demographic Study and Directory of Self-Advocacy Groups in the United States. to the “mentally normal” but physically handicapped Washington, DC: American Association on Mental person, in contrast to the “mentally handicapped,” Retardation. and already in 1926, he showed a thinking that alarm- Miller, A. B. and C. B. Keys. 1996. “Awareness, Action, and ingly coincided with the Nazi ideology for selective Collaboration: How the Self-Advocacy Movement Is care. Empowering for Persons with Developmental Disabilities.” In 1946, a year after the end of the National Mental Retardation 34(5): 312–319. Williams, P. and B. Shoultz. 1982. We Can Speak for Ourselves: Socialist regime, he described himself as a victim of Self-Advocacy by Mentally Handicapped People. Newton Nazi encroachments, yet in 1935, he had demanded Upper Falls, MA: Brookline. the separation of the “mentally sound” and the “mentally Personal Assistance and Direct Payment———1235 degenerate” and unmistakably applauded the National assistance services affect the lives of more than 9.6 Socialists for their measures to control hereditary bio- million citizens with disabilities. logical problems. Otto Perl died on October 17, 1951, The 1991 Resolution on Personal Assistance Services, at the Kaiser-Friedrich-Siechenhaus (Kaiser-Friedrich- passed at the International Personal Assistance Institute for the Invalids) in Wittenberg. Symposium, upholds the basic human and civil rights to full and equal participation in society called for in —Petra Fuchs the Americans with Disabilities Act (1990) and the See also Deinstitutionalization. United Nations Universal Declaration on Human Rights. Personal assistance services “shall enable Further Readings users to exercise their rights and to participate in every aspect of sociocultural life including, but not limited Fuchs, Petra. 1999. “Otto Perl (1882–1951): Das Recht auf Selbstbestimmung für ‘den geistig normalen Krüppel’” to home, school, work, cultural and spiritual activities, [“Otto Perl (1882–1951): The Right to Self-Determination leisure, travel and political life” (Litvak and Kennedy for ‘the Mentally Normal Cripple’”]. Die neue Sonderschule 1991). The right to these services is part of what it [The New Special School] 44(4): 301–306. means to be without discrimination based on color, Perl, Otto. 1926. Krüppeltum und Gesellschaft im Wandel der Zeit. race, creed, gender, religious background, income and Mit einem Vorwort von Dr. Hermann Rassow Crippledom and [ social class, cultural or ethnic origin, geography, or Society in Changing Times: With a Foreword by Dr. Hermann Rassow]. Gotha: Leopold Klotz Verlag. sexual orientation (World Institute on Disability Perl, Otto. 1936. “Auswählende Krüppelfürsorge” [“Selective 1991). Cripple’s Care”]. Ethik [Ethic] 12:247ff. Personal assistance services (PAS) are consumer- Simon, Gerhard. 1993. “Otto Perl—das bemerkenswerte Leben directed services (Heumann and Racino 1992; Flanagan eines körperbehinderten Menschen” [“Otto Perl: The and Green 1997), and their growth has indicated a Remarkable Life of a Physically Disabled Person”]. Pp. 9–48 need for development based on the individual and for in Otto Perl und die Entwicklung von Selbstbestimmung und Selbstkontrolle in der Körperbehinderten-Selbsthilfe bewe- models that take into account unserved or underserved gung [Otto Perl and the Development of Self-Determination groups or populations. These groups may include and Self-Control in the Physically Disabled Self-Help people who need technological assistance and those Movement], edited by H. Günter Heiden, Gerhard Simon, and with mental retardation and physical disabilities, brain Udo Wilken. Krautheim/Jagst: Eigenverlag des Bundesver- injuries, psychiatric disabilities, and other cognitive bandes Selbsthilfe Körperbehinderter e.V. disabilities (Racino 1993, 1995a, 1995b), in addition to youth and those who belong to cultural and ethnic minorities (Egley 1994). Adaptations may vary ᨘ PERSONAL ASSISTANCE substantially by disability field, in part due to the organization and funding of services in countries such AND DIRECT PAYMENT as the United States. Leaders internationally in PAS by field include Boston University’s Center for Psychiatric Personal assistance services are the most critical Rehabilitation and Judi Chamberlin, as well as con- services for individuals with disabilities and are often sumers such as Lori Stewart, one of the independent considered to be one of the individualized supports living leaders who is a psychiatric survivor. Personal essential for community life. Personal assistance is perspectives were shared internationally through the defined as one person assisting another with the tasks 1991 symposium (Weissman, Kennedy, and Litvak that individuals would normally do for themselves if 1991). they did not have disabilities (Litvak, Zukas, and Brown 1991). Personal assistance services are founded upon Critical aspects of personal assistance services are principles of universal access; information access, that it must be available up to 24 hours a day, 7 days including for children and youth; community access; per week, to people of all ages, and with access to empowerment; and opportunities for full lives (Racino governmental payments (independent of marital status and Litvak 1999). In the United States alone, personal and not as a disincentive to employment). In addition, 1236———Personal Assistance and Direct Payment selection of personal assistants must be the choice of but offer no evidence that models and populations are the service user and include family members (World closely or inherently linked” (Egley 1994:18). Major Institute on Disability 1991). Agency models of assis- systems concerns in the United States revolve around tance, while supported, are more expensive and offer systems coordination, eligibility, access, service limi- far less user control of services. More than 30 specific tations, assessment, workforce, liability, service qual- services have been surveyed in the United States, ity, and long-term services coordination. including personal, household, cognitive, transporta- Through the past decades, PAS leaders have tion, and short-term (respite, emergency) services reviewed the development of the diverse fields (e.g., (Egley 1994), and they have been reviewed in the con- community integration, supported housing and living) text of specific population groups (e.g., on issues such and led national policy at the level of their relation- as involuntary care). Models of assistance include ships with organizations such as the National Council work site support (e.g., supported employment and on Disability. Margaret Nosek, at ILRU-Texas at the worker-directed PAS) and have been approached Baylor College of Medicine, has assessed indepen- through the individual life course theory (Kasnitz dent living programs on the basis of program age, 1993), among others (e.g., Beach Center on Families, consumer control, and budget; framed PAS in the University of Kansas, lifespan theory, consumer community integration context (Nosek and Howland empowerment theory). 1993); and supported U.S. and worldwide PAS devel- Personal assistance services have been studied and opment at the public policy levels (e.g., Nosek 1991). investigated over the past decade, including through a Leaders such as Ed Roberts have provided the inspi- congressionally funded U.S. Center on Personal ration for the continued development from the inde- Assistance Services, based at the World Institute on pendent living movement’s early roots. Disability. Original nationwide work in the field was Direct payments to service users have been the conducted by Simi Litvak, Hale Zukas, and Judith theme of funding in the field of independent living Heumann (1987) in the report Attending to America, (Brown 1993), while other fields have pursued cash based on the independent living paradigm developed subsidies as part of service packages (Bradley, Knoll, by Gerald DeJong, a supporter of personal assistance and Agosta 1992 [family support services]) and in long-term care (DeJong, Batavia, and McKnew explored the options of direct payments (Ridley and 1992). The centers also developed from their interna- Jones 2003 [mental health]). In addition, major efforts tional roots (e.g., Judith Snow and circles of support nationwide in the United States have been placed on [Canada]) with national support, such as the Consor- modifying public sources of funding for Medicaid, tium of Citizens with Disabilities (e.g., Marty Ford of especially for community services (Doty, Kasper, and the Arc), state-level field models in severe disabilities Litvak 1996; Racino 2000a, 2000b). In the field of (O’Brien 1992), the aging and university communities mental retardation and developmental disabilities, indi- (Heumann and Racino 1992), and local/ state inde- vidualized funding tied to the person has been the pendent leaders throughout the United States. major focus in reform for the past several decades (see New models of youth personal assistance services also Racino 2000a, 2000b; Lord and Hutchinson 2003). include peer-to-peer support; self-determination; In the United Kingdom, direct payments to people with career development; in-school support; youth lifestyles, disabilities to purchase their own support services were including dating; and social relationship facilitation, attributed to importation from the United States and if desired. Program models of PAS for independent Canada (Maglajlic, Brandon, and Given 2000). living have been identified as varying based on the Debates by the late 1990s moved on the services degree of consumer choice, often involving variations front to privatization in the context of supporting the of state administration in relationship to the service individual person (vouchers, grants, and service choice; user (Egley 1994). Among other findings (e.g., costs of Glover 1999) and less so to the family-user-government PAS), “available data have indicated that different relationships. By 2000, the first international confer- models do tend to serve different population groups, ence on individualized funding and self-determination Personal Assistance and Direct Payment———1237 was held in Seattle, Washington, and the Internet hosted Centre for Research and Education in Human Services. 1993. sites worldwide on the topic (e.g., European Network on Review of Individualized Funding. Kitchener, Ontario, Independent Living, Centre on Human Policy, Syracuse Canada: Centre for Research and Education and Human Services. University, Instituto Universitario de Integración en la DeJong, G., A. Batavia, and L. McKnew. 1992. “The Independent Comunidad in Spain, the Australian Society Association Living Model of Personal Assistance in Long-Term Care for the Study of Intellectual Disabilities, Community Policy.” Generations 16(1): 89–95. Living Society of Canada, and Hester Adrian Research Doty, P., J. Kasper, and S. Litvak. 1996. “Consumer-Directed Centre in the United Kingdom). Models of Personal Care: Lessons from Medicaid.” The International models of personal assistance Milbank Quarterly 74(3): 377–409. Egley, L. 1994. Program Models for Personal Assistance Services services, which were also presented in 1991 at the for Independent Living. Oakland, CA: Center for Personal International PAS Symposium, include housing and Assistance Services, World Institute on Disability. personal assistance services in Sweden (Tucker and Flanagan, S. A. and P. Green. 1997. Consumer-Directed Personal Kleinman 1990), especially the Stockholm Coopera- Assistance Services. Cambridge, MA: The Medstat Group. tive Model for Independent Living (Ratzka 1991). Glover, T. 1999. “Funding the Individual: An Idea That Spans the Service brokerage with a component of individualized Ideological Spectrum.” Journal of Leisurability 26(4): 1–6. Heumann, J. and J. Racino. 1992. “Independent Living and funding began in Canada (Salisbury, Dickey, and Community Life: Building Coalitions among Elders, People Crawford 1987), which has strong proponents for indi- with Disabilities and Our Allies.” Generations: Journal of vidualized funding and support approaches and links the American Society on Aging 16(1): 43–47. easily with the United States and United Kingdom Kasnitz, D. 1993. “Work-Site PAS Models: Career Life-Course (Centre for Research and Education in Human Study.” In Proposal for a Center on Personal Assistance Services 1993). Independent living has been pursued Services to the National Institute on Disability Research and Rehabilitation. Oakland, CA: World Institute on Disability. in diverse parts of the world, from Japan and South Litvak, S. and J. Kennedy. 1991. Policy Issues Affecting the Africa to Norway and New Zealand, and these roots Medicaid Personal Care Services Optional Benefit. World are critical for the future development of PAS. Institute on Disability. Today, the support and empowerment paradigm has Litvak, S., H. Zukas, and S. Brown. 1991. “A Brief Economy influenced the development of PAS, including “model of Personal Assistance Services.” Spinal Cord Injury Life, variation” based on community membership, person- Spring, 3–5. Litvak, S., H. Zukas, and J. Heumann, J. 1987. Attending to centered and support approaches, the continued expansion America: Personal Assistance for Independent Living. to and from other population groups (e.g., HIV-AIDS), Berkeley, CA: World Institute on Disability. systems reform of state-federal-local financing, and Lord, J. and P. Hutchinson. 2003. “Individualised Support and diverse contexts such as those of abuse and rights abridge- Funding: Building Blocks for Capacity Building and ments. Personal assistance services, with its roots in the Inclusion.” Disability & Society 18(1): 71–86. independent living movement, has reached new genera- Maglajlic, R., D. Brandon, and D. Given. 2000. “Making Direct Payments a Choice: A Report on the Research Findings.” tions and holds a promise beyond its beginnings for per- Disability & Society 15(1): 99–113. sonal and community futures in the years yet to come. Nosek, M. 1991. “Personal Assistance Services: A Review of the —Julie Ann Racino Literature and Analysis of Policy Implications.” Journal of Disability Policy Studies 2(2): 1–16. Nosek, M. and C. Howland. 1993. “Personal Assistance Services: See also Advocacy; Assistive Technology; Decision Making; The Hub of the Policy Wheel for Community Integration of Empowerment and Emancipation. People with Severe Physical Disabilities.” Policy Studies Journal 21(4): 789–799. Further Readings O’Brien, C. 1992. To Boldly Go: Individualized Supports for Bradley, V., J. Knoll, and J. Agosta. 1992. Emerging Issues in Georgians with Severe Disabilities. Atlanta, GA: Develop- Family Support. Washington, DC: American Association on mental Disabilities Planning Council. Mental Retardation. Racino, J. 1993. “Personal Assistance Services and People with Brown, L. 1993. Money Talks: But What Is It Saying? Revealing Mental Retardation.” International Rehabilitation Gazette, the Impact of Individualized Funding. Calgary, Alberta, June, 2–3. (Rehabilitation Research and Training Center on Canada: Vocational and Rehabilitation Research Institute. Community Integration, Syracuse University). 1238———Personal Care Attendants

———. 1995a. Annotated Bibliography on Personal Assistance PCAs are increasingly employed to assist other Services. Syracuse, NY: Community and Policy Studies (for populations who require extensive supervision or help World Institute on Disability, New Models Research Project). with daily living activities, such as people with cogni- ———. 1995b. “Personal Assistance and Personal Support Services for, by and with Adults, Youth and Children with Disabilities.” tive impairment and frail elderly individuals who are Journal of Vocational Rehabilitation 9(2): 35–48. at risk for nursing home placement. ———. 2000a. “An Update and Review of the Literature: While historically, the majority of PCAs were Individualized Financing and Technical Assistance in the untrained independent direct care providers, a rising US.” Unpublished manuscript. demand for workers who provide assistance services ———. 2000b. Personnel Preparation in Disability and has led to the development of training programs by Community Life. Springfield, IL: Charles C Thomas. Racino, J. and J. Heumann. 1992. “Whose Life Is It? The Issue of community colleges and other organizations that Control of Personal Assistance Services.” Disability Studies certify paraprofessionals in the health care field. The Quarterly 12(3): 22–24. duration of such programs may be from several weeks Racino, J. and S. Litvak. 1999. “Part III: Introduction: Personal to several months. In many programs, the titles PCA Assistance.” In Policy, Program Evaluation and Research in and certified nursing assistant (CNA) are synony- Disability: Community Support for All, edited by J. Racino. mous. Like CNAs, PCAs are hired by home health Binghamton, NY: Haworth. Ratzka, A. 1991. “Model in Personal Assistance: The Example of agencies and nursing homes, although many certified STIL, the Stockholm Cooperative in Independent Living.” PCAs retain independent status. Pp. 1–9 in Personal Assistance Services: A Guide to Policy PCAs are central to the “personal assistance service and Action. Oakland, CA: The RTC on Public Policy and (PAS)” model of providing help to people with disabil- Independent Living, World Institute on Disability. ities in the home setting, a mainstay of the independent Ridley, J. and L. Jones. 2003. “Direct What? The Untapped living movement. The PAS model is in contrast to the Potential of Direct Payments to Mental Health Service Users.” Disability & Society 18(5): 643–658. home health agency-based model of home care delivery Salisbury, S., J. Dickey, and C. Crawford. 1987. Individual historically associated with the aging service system. Empowerment and Social Service Accountability. The PAS and agency-based models represent Downsview, Ontario, Canada: The G. Allan Roehrer Institute. different and incompatible philosophies of service Tucker, S. and J. Kleinman. 1990. Housing and Personal delivery. Proponents of PAS view home health Assistance Services: Lessons from Sweden: IDEAS Portfolio agency-based workers to be part of the medical model II. Oakland, CA: World Institute on Disability and Rehabilitation International. of service delivery, in which health care providers Weissman, J., J. Kennedy, and S. Litvak. 1991. Personal define, direct, and deliver services to the individual. Perspectives on Personal Assistance Services. Oakland, CA: Agency supervisors hire, train, pay, and, if necessary, Research and Training Center on Public Policy and fire the home health aide or homemaker who is the Independent Living, World Institute on Disability, InfoUse, direct provider of care. Under the medical model, the and the Western Public Health Consortium. service recipient assumes the passive role of patient, with little input into the nature of services provided and little control over the direct provider of care. ᨘ PERSONAL Activists and supporters of the independent living CARE ATTENDANTS movement argue that the medical model entails the sacrifice of personal control as a condition of service Personal care attendants (PCAs), also referred to as receipt. Thus, this model is perceived to foster depen- personal assistants, are individuals who provide help dency, which is antithetical to the concepts of empow- to people who have difficulty performing, or are com- erment and independence—major goals of the pletely unable to perform, daily living activities independent living movement. by themselves due to a disabling condition or injury. In contrast, control resides with the service recipi- Until recently, the use of PCAs was associated with ent, termed consumer or client, in the PAS model only the most severely physically disabled population of service delivery. Under this consumer-centered (e.g., people with paraplegia or quadriplegia). However, model, the person with disability interviews, hires, Personal Care Attendants———1239 trains, manages, and, if necessary, fires the direct individuals who need help with tasks essential to provider of services, generally a PCA. While the title everyday life. Furthermore, an alliance of the two “personal care attendant” is still widely used, members constituencies could greatly enhance opportunities of the independent living movement and its broader for political action in securing the expansion of long- counterpart, the disability rights movement, perceive term community-based services in a manner that the word care to hold connotations that are more maximizes the potential for community rather than appropriate to a medical model approach. Personal institutional living, as well as participation in the assistant, on the other hand, conveys a broader role mainstream of community life. that encompasses assisting consumers to meet work- For some elderly people who need extensive help, related and social needs. PCAs are a feasible and not prohibitively expensive The duties of the PCA, or personal assistant, in the alternative to nursing home placement. However, PAS model are defined by the consumer in accordance there is no doubt that some elderly people lack enthu- with his or her needs. Payment is either out of pocket or siasm for the personal assistance model, generally from third-party payers to the consumer who, in turn, because of discomfort with assuming the role of pays the assistant, thus reinforcing that accountability is employer or supervisor. In response to this discom- to the consumer in a clearly defined employer-employee fort, many independent living centers offer training to relationship. people with disabilities on how to manage their PCA. In general, two features of the PAS model increase Other concerns that have served to impede wide- the likelihood that service recipients will have their spread use of PCAs are fears of client safety, exploita- needs met over the more traditional agency-based tion, and even abuse. Such fears stem from the fact model. First, the job of the PCA is defined by the con- that independent PCAs often lack the training that sumer, not an agency, and redefined according to the agency-based workers are required to receive as a consumer’s changing needs. Control over job descrip- term of their employment. In addition, attendants tion such that the highly specific needs of the individ- are often hired in response to newspaper ads placed ual are met empowers the person with disability to by clients and consequently are not subject to back- participate in life’s activities to a far greater extent ground checks. Despite these potential drawbacks, than the more limited agency-based model, in which several large-scale studies comparing the personal tasks performed by the PCA are fixed and typically assistance model to the agency-based model have confined to the client’s home. found no difference in the instances of abuse, exploita- A second beneficial feature of the PAS model is the tion, or adverse consequences associated with lack of additional amount of coverage allowed by the organiza- training reported by consumers of the two models of tional structure of the program. The elimination of service delivery. In fact, several studies conducted to administrative overhead associated with agency-directed date have concluded that clients of PAS are more sat- services results in cost savings that can then be used to isfied with care arrangements than are clients of purchase additional hours of PCA service delivery. agency-based services. The majority of third-party funding for PCAs is Another unique feature of the PAS model of care, through states’ Medicaid personal care optional bene- as offered under the Medicaid personal care option fit. Currently, only 28 states have this option avail- by a number of states, is that family members of able, although recent emphasis on community care for the person who requires help are eligible to serve as people with disabilities has heightened interest in PCAs. Studies have shown that people with disabili- expanding the Medicaid personal care option. An ties who employ family members as their personal obstacle to expansion of this option is concern regard- assistants are most satisfied with the quality of the ing the feasibility and desirability of the PAS model job performed. This finding has allayed fears among for elderly persons with disabilities. Advocates argue Medicaid program administrators that family that the principles of autonomy, control, and indepen- members will take advantage of a personal care bene- dence are appropriate for older as well as younger fit, by receiving payment for a service they would 1240———Phantom Limb Pain have performed anyway. Research has shown, sensations from a limb that has been removed, however, that payment to family members enables although it has also been applied to sensations seem- them to stay out of the workforce, assisting their loved ingly coming from dead tissue. American Civil War ones in performing daily tasks while still earning surgeon and physiologist Silas Weir Mitchell coined much-needed income. the term after working with amputees in Philadelphia Other labor issues associated with the PCA position but was not the first person to write about the phe- include low pay and few or no benefits. However, a nomenon. Early descriptions of phantom limbs appear survey of Medicaid PAS programs conducted by the in the works of Ambroise Paré (mid-1500s), René World Institute on Disability in the 1980s revealed sub- Descartes (mid-1600s), Charles Bell (early 1800s), stantial variation in wages and benefits offered to atten- and many others. The historical literature even reveals dants, with independent PCAs in some states earning a self-description of a phantom limb by William more than agency-based workers in other states. Porterfield, a highly regarded Scottish physician who With the aging of the population and increase in described his illusory sensations in 1759. life expectancy for people with disabilities, it is likely Different people living at different times had that the demand for PCA services will increase in the different motives for writing about this disorder. near future, particularly by frail elderly people who For Paré, a Renaissance barber-surgeon, the important desire to “age in place” despite disability. As this pro- thing was not to be fooled by “false” sensations. His fession evolves, it is likely that associated wages and fear was that sensations from dead tissue might benefits will improve, as will its stature in the health dissuade well-meaning surgeons from performing care field. An adequate supply of PCAs will be essen- life-saving amputations on riddled, gangrenous limbs. tial to fuel current trends toward the development of For Descartes, the great French philosopher, phan- home-based alternatives to nursing home care. toms were used to argue that sensory information can be grossly misinterpreted and that the human soul —Susan M. Allen receives information from the brain. Bell, in contrast, See also Caregiving; Personal Assistance and Direct Payment. used phantom sensations of limbs in various positions to support a sixth sense, his muscle or proprioceptive Further Readings sense. From his studies of sensation and movement, Benjamin, A. E., Ruth Matthias, and Todd M. Franke. 2000. he became convinced that the brain not only sends “Comparing Consumer-Directed and Agency Models for messages to the muscles but also must receive feed- Providing Supportive Services at Home.” Health Services back from those muscles to manipulate the limbs Research 35:351–366. effectively. DeJong, Gerben, Andrew I. Batavia, and L. B. McKnew. 1992. As for Silas Weir Mitchell, he was both a surgeon “The Independent Living Model of Personal Assistance in National Long-Term Care Policy.” Generations 16:89–95. and a humanist. He viewed phantoms an all-too- Doty, Pamela, Judith Kasper, and Simi Litvak. 1996. “Consumer- common horror of war that demanded compassion Directed Models of Personal Care: Lessons from Medicaid.” from the public and considerably greater understand- The Milbank Quarterly 74:377–409. ing by the medical community. He even presented a Foster, L., R. Brown, B. Phillips, J. Schore, and B. L. Carlson. fictional case involving a wounded medical officer in 2003. “Improving the Quality of Medicaid Personal a popular magazine, hoping that “George Dedlow’s” Assistance through Consumer Direction.” Retrieved May 30, 2005 (www.healthaffairs.org/WebExclusives/Foster_Web_ plight would move people to take the mental conse- Excl_032603.htm). quences of amputation more seriously. Much was learned about phantom phenomena even before the twentieth century, including the fact that ᨘ PHANTOM LIMB PAIN phantoms can follow amputations of more than just limbs. Descriptions of phantom breasts and even The term phantom limb has been used since the 1870s penises can be found in the early literature. So can largely to describe the experience of pain and other recognition of the fact that phantoms can be brought Physical Activity———1241 on by loud noises, changes in the weather, emotional disabilities and that physical activity must be a turmoil, and physical (including electrical) stimula- targeted health priority to prevent a progressive loss in tion of the nerve trunk. Perceived changes in the size health and function. and position of a missing part have also been studied, as has the time-since-amputation factor. The literature on phantom limbs now encompasses TERMINOLOGY IN hundreds of papers and many books. These writings PHYSICAL ACTIVITY describe a multitude of treatments that have been Physical activity involves all forms of bodily tried, often with only temporary success. They include movement produced by contraction of skeletal muscle nerve resection, cauterization, narcotics, anesthetics, that substantially increases energy expenditure. nerve blocks, acupuncture, and more radical amputa- Subcategories of physical activity include leisure-time tions. Like Paré, Descartes, Bell, and Mitchell, people physical activity (LTPA), which is a broad descriptor today are still trying to understand the relative contri- of the activities one participates in during free time, butions of signals from remaining nerve stumps, the based on personal interests and needs. A structured roles of associative learning and memory, and the form of physical activity is generally referred to as actions of the creative brain in this perplexing disor- exercise, which is different from other forms of der. The hope is that, with more knowledge, there will physical activity by its well-planned, structured, and be more effective treatments. consistent body movements and repetitions. Other —Stanley Finger kinds of physical activity include work-related activ- ity or household activity. Gardening, cleaning, and See also Amputation; Pain. working in physically demanding jobs (e.g., construc- tion, janitorial) are all considered forms of physical Further Readings activity. Among people who have a disability or are Anonymous (Mitchell, Silas Weir). 1866. “The Case of George injured, therapy or rehabilitative exercise could also Deadlow.” The Atlantic Monthly 18:1–11. be considered a form of physical activity. Finger, Stanley. 2003. “Five Early Accounts of Phantom Limb in Context: Paré, Descartes, Lemos, Bell, and Mitchell.” Physical Fitness. Physical fitness is defined as a set Neurosurgery 52:675–686. Price, Douglas B. and Neil J. Twombly. 1972. The Phantom Limb. of attributes that people have or achieve that relates to Washington, DC: Georgetown University Press. the ability to perform physical activity. Components Sherman, Richard A., M. Devor, and K. Heermann-Do. 1997. of physical fitness include cardiorespiratory endurance, Phantom Pain. New York: Plenum. muscular strength and endurance, flexibility, body Sigfried, Jean and Manfred Zimmermann, eds. 1981. Phantom composition (ratio of lean muscle mass to body fat), and Stump Pain. Berlin: Springer-Verlag. balance, and respiratory function. Certain individuals with disabilities will require a greater amount of each component depending on the various secondary con- ᨘ PHYSICAL ACTIVITY ditions that may be associated with their disability. For example, persons with post–polio syndrome may An important aspect in improving the health of people require respiratory exercises to maintain the strength with disabilities is to encourage higher levels of of the pulmonary musculature. Individuals with mul- physical activity. Not only is physical activity impor- tiple sclerosis often have difficulty with gait and bal- tant from the standpoint of promoting a higher quality ance and would benefit from an exercise training of life by reducing secondary conditions and main- program that targeted these areas. taining functional independence, but it is also essen- tial in terms of reducing health care expenditures. Exercise. This is a subset of physical activity that is Several reports have noted that a sedentary lifestyle planned, structured, and consists of repetitive bodily can precipitate functional decline in people with movement that is done to improve or maintain one or 1242———Physical Activity more components of physical fitness. Examples of for Disease Control and Prevention, Surgeon General’s structured exercise that people with disabilities often Office, and the American College of Sports Medicine participate in are chair aerobics, swimming, and hand- have all developed position statements that call for cycling, among others. Americans to achieve a higher level of physical activity. One of the historic documents published by the Moderate-Intensity Physical Activity. This term is used Surgeon General’s Office in 1996 was a report titled in the Healthy People 2010 document to describe any The Surgeon General’s Report on Physical Activity and type of physical activity requiring three to six times the Health. This report emphasized that physical inactivity energy required at rest. Since the definition has been is a major contributor to heart disease, adult onset dia- developed for young individuals without disabilities, it betes, and colon cancer and that the risk from inactivity is not clear if a “moderate” level of physical activity is similar to that of smoking. Today, physical activity would be different for persons with disabilities. has been recognized by numerous public health organi- zations as an important vehicle for improving the health Vigorous Physical Activity. This term is also used in of the U.S. population. the Healthy People 2010 document to express any Despite strong endorsements from the Centers physical activity requiring seven times the energy for Disease Control and Prevention (CDC), National required at rest. Similar to the definition for moderate Institutes of Health, Surgeon General’s Office, and intensity physical activity, this definition has been American College of Sports Medicine, most Americans established for younger populations without disability. are still not obtaining the recommended amount of Many activities that people with disabilities perform physical activity that is necessary for maintaining require a higher level of energy expenditure (i.e., trans- health, and the level of physical inactivity among fers, walking with crutches or pushing a wheelchair, persons with disabilities is significantly higher than that carrying various items). It is possible that moderate or of the general population. This represents a significant vigorous physical activity has a different connotation public health issue for people with disabilities. for people with disabilities and does not fall in the same range that describes these activities for the general pop- ulation. For example, carrying a bag of groceries from OVERVIEW OF PHYSICAL the store to the car may be considered a “moderate” ACTIVITY AND DISABILITY activity for the general population but a “vigorous” For close to a half century, exercise has been promoted activity for someone with reduced gait efficiency. More as one of the most powerful health promotion strate- research is needed to evaluate the intensity level of var- gies for reducing chronic disease (i.e., heart disease, ious instrumental activities of daily living and general diabetes) and functional limitations. The first 25 years physical activities in persons with various types of of research in exercise physiology contained only a physical, cognitive, and sensory disabilities. handful of studies that investigated the effects of exer- cise on people with disabilities. Several of these stud- PUBLIC HEALTH INITIATIVE ies were conducted on children with cerebral palsy and IN PHYSICAL ACTIVITY other neuromuscular disorders, primarily in Sweden and other Scandinavian countries. It was only until the As a result of several landmark studies that have mid-1980s that a growing number of researchers began shown a graded, inverse relationship between physical to investigate the effects of exercise on people with activity/fitness and the incidence of morbidity and disabilities in both children and adults. mortality, public health officials and federal agencies The research literature on physical activity, exercise, are recommending that all Americans, including per- and disability continues to expand. Exercise-related sons with disabilities, engage in a minimum of 30 min- studies are being conducted to determine the effects of utes a day of moderate aerobic exercise. The American various interventions using cardiorespiratory, strength, Heart Association, National Institutes of Health, Centers flexibility, and balance training to enhance overall Physical Activity———1243 health and function. While there are numerous short- 35 term studies demonstrating the positive effects of exer- 30 30 cise on improving various health outcomes in people with disabilities, longitudinal studies are still lacking. 25 20

15 Exercise 9.1 Low Physical Activity Participation 10 7.6 8.7 among People with Disabilities 5.4

Daily Minutes of Moderate 5 Federal officials and members of the public 0 health community are growing increasingly concerned Stroke Arthritis Diabetes that as persons with disabilities age, they will have All Disability increasing difficulty performing activities of daily liv- Recommendation ing (ADL) (i.e., dressing, showering) and instrumental All Disability Stroke Diabetes activities of daily living (IADL) (i.e., ambulation, Arthritis Recommendation doing laundry, grocery shopping) at a much earlier rate than the general population. Persons with physical dis- abilities are often faced with various environmental Figure 1 Daily Physical Activity Reported by People with challenges (i.e., navigating ramps and curb cuts, per- Disabilities Source: Data from the National Center on Physical Activity and Disability forming transfers) as a result of their impairment (i.e., (www.ncpad.org). paralysis) and/or associated secondary conditions (i.e., spasticity, weakness, pain, fatigue). The high incidence of physical inactivity observed in persons with disabil- Physical Activity and ities, combined with the natural aging process, pre- Reduction of Secondary Conditions sents a greater risk of premature physical decline and Numerous laboratory and field-based studies have accentuates the importance of physical activity in quantified the many health and fitness benefits associ- maintaining health and function. ated with physical activity. Among studies with disabled Despite calls for higher levels of physical activity populations, benefits of endurance and strength training from major federal and private agencies, the vast major- include reduced fatigue, reduced pain, improved fitness, ity of persons with disabilities are not obtaining the and general well-being. Implicit in these reports is the recommended 30 minutes a day of physical activity notion that the health and fitness benefits associated with necessary for conferring health benefits and preventing physical activity most likely follow a dose-response rela- or mitigating secondary conditions. Several reports tionship. Most experts agree that any amount of physical have noted that people with disabilities have a dispro- activity is beneficial and that even minimal amounts of portionately higher incidence of physical inactivity physical activity are better than no physical activity at compared to people without disabilities. The Healthy all, and increasing amounts of physical activity accrue People 2010 document reported the prevalence of greater health benefits provided it is done safely. physical inactivity among people with disabilities to be Vigorous physical activity performed in excess amounts substantially higher than in people without disabilities, (usually greater than one hour) increases the risk of 56 percent versus 36 percent. And in data collected at injury. Physical activity must be conducted in a manner the National Center on Physical Activity and Disability that allows maximum benefits at the lowest possible (NCPAD), very low levels of physical activity were risk. Given the progressive nature of certain disabilities reported among various subgroups of disability. As noted (i.e., multiple sclerosis) or physiological changes that in Figure 1, individuals with stroke, type 2 diabetes, occur after injury (i.e., spinal cord injury), greater atten- and arthritis were significantly below the recommended tion must be provided by exercise specialists to ensure 30 minutes a day of moderate exercise recommended that the program is safe and effective in enhancing over- by the CDC and other federal agencies. all health. Shoulder injuries are common in chair users 1244———Physical Activity and have prompted researchers to develop alternative engaging in physically active lifestyles at the same ways to exercise that will reduce the stress on joints and level as their peers. This may be due, in part, to the muscles that are used for ambulation. many environmental barriers to physical activity that people with disabilities are often confronted with, Physical Activity, including inaccessible equipment and programs, trans- Functional Status, and Disability portation difficulties, limited income, unsafe neigh- borhoods, and a variety of personal barriers such as Given the empirical evidence linking physical chronic health conditions and beliefs that exercise will activity with functional status and overall health, as not benefit their health. well as the fact that impaired health and functioning Accessibility of fitness and recreation programs can impede participation in physical activity, one can and facilities is a critical issue affecting the participa- postulate a downward cyclical pattern in both health tion of persons with disabilities in fitness and leisure and functioning that results from prolonged physical activities and ultimately affects their ability to inactivity. The onset of disability often results in greater improve their health and quality of life. A common effort required to engage in physical activity, thereby barrier in the disabled population is the lack of atten- causing persons with disabilities to remain sedentary. tion given in promotional campaigns to the needs of Physical inactivity over prolonged periods results in the persons with disabilities. Public health messages development of secondary disabling conditions and encouraging people to become more physically active further functional loss, which in turn results in greater usually recommend walking a minimum of 30 min- effort to participate in physical activities. utes a day most days of the week. Unfortunately, this The relationship between physical functioning and recommendation is unattainable by many people with physical activity is a reciprocal one; physical func- disabilities and chronic health conditions who are tioning provides the individual with the capability unable to walk (i.e., spinal cord injury, multiple scle- to engage in physical activities, whereas physical rosis), have difficulty walking (i.e., back pain, obesity, activity helps to maintain and, in some cases, improve heart condition, arthritis, frailty), live in neighbor- physical functioning. This reciprocal relationship, hoods where it is unsafe to walk, or are not allowed coupled with the high prevalence of physical inactiv- to walk without supervision. Campaigns to increase ity among persons with disabilities, has profound physical activity must present a more inclusive image implications for rehabilitation practice, especially in by providing people with disabilities greater opportu- evaluating intermediate and long-term outcomes of nities to improve their health besides walking. For this clinical practice. For rehabilitation to play a role in the to occur, personal and environmental barriers must be long-term maintenance and enhancement of physical eliminated so that access to various types of physical functioning among persons with disabilities, monitor- activity can be engaged in by a significant percentage ing of physical activity by both rehabilitation pro- of the disabled population. fessionals and individuals with disabilities must be part of the recovery and maintenance process. The develop- ment of a standardized tool for assessing physical activ- Resource on Physical ity levels of people with physical disabilities can serve Activity and Disability: NCPAD the purpose of monitoring physical activity patterns at Through a grant from the CDC and the National both the individual (clinical application) and population Center on Birth Defects and Developmental levels (public health surveillance level). Disabilities, the National Center on Physical Activity and Disability (referred to as NCPAD) was estab- Barriers to Physical Activity lished in 1999. This information and resource center Experienced by People with Disabilities offers people with disabilities, caregivers, and profes- Despite the plethora of evidence supporting the sionals the latest information on fitness, recreation, benefits of regular physical activity for improving and sports programs for people with disabilities. health and function, people with disabilities are not NCPAD’s aim is to collect and synthesize various Physical Medicine and Rehabilitation——1245 types of information on physical activity, rehabilitation, Rimmer, James H. 1999. “Health Promotion for Persons with and disability and to disseminate this information to Disabilities: The Emerging Paradigm Shift from Disability fitness and health professionals. With advances in tech- Prevention to Prevention of Secondary Conditions.” Physical Therapy 79:495–502. nology, the NCPAD website at http://www.ncpad.org Rimmer, James H. and David Braddock. 1997. “Physical Activity, contains various types of readily accessible information Disability, and Cardiovascular Health.” Pp. 236–244 on exercise and disability. The center also publishes a in National Institutes of Health: Physical Activity and monthly electronic newsletter and sends out monthly Cardiovascular Health: A National Consensus, edited by features via e-mail on new topics and information related A. S. Leon. Champaign, IL: Human Kinetics. to physical activity and disability. Sallis, James F. and Neville Owen. 1999. Physical Activity & Behavioral Medicine. Thousand Oaks, CA: Sage. U.S. Department of Health and Human Services. 1996. Physical SUMMARY Activity and Health: A Report of the Surgeon General. Atlanta, GA: U.S. Department of Health and Human The evidence concerning the benefits of physical activ- Services, Centers for Disease Control and Prevention, ity is compelling. Among people in the general popula- National Center for Chronic Disease and Prevention. ———. 2000. Healthy People 2010: Understanding and tion, participation in habitual physical activity extends Improving Health. Retrieved April 10, 2003 (www.health/ life, prevents multiple chronic conditions, and has bene- gov/healthypeople/ document/html/volume1/ opening.htm). ficial effects on many systems of the body. Physical activity epidemiologists have noted that approximately Websites 250,000 deaths in the United States annually can be National Center on Physical Activity and Disability, www attributed to a sedentary lifestyle. It is considered one of .ncpad.org the leading preventable causes of death in our society. It is unfortunate that most, if not all, of the physical activity longitudinal research has been conducted ᨘ on nondisabled populations. While there is good evi- PHYSICAL MEDICINE dence from short-term clinical studies demonstrating the AND REHABILITATION benefits of physical activity among various subgroups of disabled populations, there is a dearth of longitudinal Until the beginning of the twentieth century, people data on the long-term effects of physical activity in this with disabilities were generally scorned, pitied, cohort. Future longitudinal studies must be conducted on demeaned, and, in some societies, killed. As recently various subgroups of individuals with disabilities to as the 1950s, they were “imprisoned” without trial determine the magnitude of health benefits that might be in places such as “The Home for the Incurables” and accrued from a physically active lifestyle. custodial facilities. Even when kept at home, they were often isolated and “hidden” from outsiders. Still, —James H. Rimmer “custodial care” too often is considered first, before See also Activities of Daily Living; Exercise and Physical Activity; placement at home. International Classification of Functioning, Disability, and There were isolated instances of medical people Health (ICF/ICIDH); Recreation; Sports and Disability. who showed an interest in “cripples,” but they were rare. In general, medical students and others were Further Readings taught that it would be uninteresting and demeaning, American College of Sports Medicine. 2000. ACSM’s Guidelines if not futile, to be involved in the care of such people for Exercise Testing and Prescription. Philadelphia: (as well as the elderly and chronically ill). Lippincott Williams & Wilkins. The main thrust toward the organized care of Pate, Russ R., Michael Pratt, Steven N. Blair, William L Haskell, people with disabilities came because of (1) the Carolyn A. Macera, and Claude Bouchard. 1995. “Physical great drama of polio, a sudden event (paralyzing and Activity and Public Health: Recommendation from the Centers for Disease Control and Prevention and the American sometimes fatal) affecting a president, Franklin D. College of Sports Medicine.” Journal of the American Roosevelt, and very frequently children, and (2) World Medical Association 273:402–407. Wars I and II. In both instances, the nation decided 1246———Physical Medicine and Rehabilitation that care must be given and that there should be an large sums of money to worthy causes, they could attempt to reintegrate people with disabilities into the multiply this amount hundreds of times by “lobbying” community. in Washington, D.C., to get the government more This idea of allowing people with disabilities to involved in health. participate and contribute in the community was not Their main contribution to society was providing entirely original at that time. At the beginning of the impetus for the formation of the National the twentieth century, bureaucracies were intended to Institutes of Health. They discovered that in facilitate employment of people with disabilities, Washington, D.C., there was a small agency headed especially if they had been in the military. by Mary Switzer that attended to some aspects of In most wars, relatively few numbers of disabled people with disabilities, especially vocation. Switzer people had returned home; however, with the discov- was an intelligent, charming, and convincing woman ery of antibiotics and better trauma care, more veter- with New England force and directness blended with ans of World War II survived, and there was a national Irish charm. outcry that these people, these heroes, should not be The Laskers also discovered an extraordinarily “discarded.” capable and charismatic man, Dr. Howard Rusk, who In military hospitals, some physicians took it upon had built a rehabilitation center in New York at the themselves to develop a system to help these veterans NYU Bellevue Medical Center on 34th Street. He was (largely men). It was soon discovered that it would be an internist but had helped invent the techniques of necessary to deal with issues of functional loss and PM&R and promulgated its principles. He had built frequently with overwhelming psychological and the rehabilitation center at Jefferson Barrack Hospital sociological issues. Social work, nursing, and other in Missouri during the war. Dr. Rusk and Switzer, allied health personnel were found to be necessary in united by the Laskers, mesmerized the Congress and carrying out this work as a collaborative effort. generated millions of dollars for Switzer’s agency. A solo physician could not address these needs Mary Switzer’s agency developed a mandate to alone, so “collaborative medicine” practices were devel- deal with disability very broadly—educating a whole oped to unite the physician with a team of medical con- nation about people with disabilities. At that time, sultants as well as nurses, physical therapists, social few hospitals or medical schools had shown much workers, speech pathologists, occupational thera- interest in people with disabilities, but their interest pists, vocational counselors, and various technicians. was piqued when money appeared on the horizon. Not The approach had to be nonautocratic and non–male only did Ms. Switzer supply funds for programs to chauvinistic. train residents in the specialty of PM&R (physia- At the same time, the Veterans Administration (VA) trists), but she also offered funding for stipends for system was developed, and most of its 172 hospitals medical students to train. Training residents made included this potential for a rehabilitation system. it possible to send physiatrists where there were few In the meantime, celebrity status was given to or none, and good and early care could be made polio, especially because of the effect it had on available. Even now in the United States, if someone Franklin D. Roosevelt, and huge amounts of money becomes disabled, he or she may go to the person were raised as a bulwark for a national effort to pro- considered the best doctor in town and find that the vide care for this population. doctor has never seen a similar case and has no These movements required physicians able to prac- knowledge of rehabilitation. Switzer’s impact on tice physical medicine and rehabilitation (PM&R), so medical students started with her mandatory sum- the demand grew. mer fellowship. Eventually, mandatory rehabilita- At about this time, a philanthropic couple in tion rotations were added for students in medical New York, Mary and Albert Lasker, became very school. interested in health. At some point, Albert Lasker Switzer also established regional research and decided that although he and his wife could contribute training centers, which became very important, and Physical Medicine and Rehabilitation———1247 some eventually evolved into centers for spinal cord approach of physiatry. Nonetheless, by 1920, there injury and stroke. In each of these instances, a grant were few people in the field of rehabilitation. went to a comprehensive center and gave it status Physical therapy began to develop and became along with the obligation to have links to other states recognized by physicians as vital to their team. In and to spread knowledge about aspects of disability 1926, Dr. John Stanley Coulter pioneered PM&R in beyond the original centers. the United States and became assistant professor of All of this made PM&R much more visible—to the physical therapy at Northwestern University Medical medical and lay communities. Progress has been slow School. in coming, however, partly because physiatrists have In 1928, President Hoover established a “Children’s not made an effort to explain who they are, what they Charter” highlighting the need to attend to the needs do, and what their background and education are. of crippled children. Many physiatrists will not even use the word physia- In 1929, Dr. Frank Krusen established a Department trist but will simply say they care for the disabled. of Physical Medicine and Rehabilitation at Temple This does little to spread the word about the field of University. He then joined the Mayo Clinic in 1935, PM&R. organizing and directing the Mayo Clinic Graduate School of Medicine’s first three-year fellowship in EARLY EFFORTS IN physical medicine. REHABILITATION MEDICINE In 1935, Dr. Henry Kessler wrote about the absolute necessity of the development of the rehabilitation The first major thrust toward thinking about bring- movement around a comprehensive medical, socio- ing people with disabilities into the mainstream of logical, psychological, and vocational model. He built society was accomplished by Jeremiah Milbank, a a center in New Jersey and published eloquent reports wealthy 30-year-old New York lawyer who had been and papers. interested in helping the “crippled beggars” in the Dr. Kessler objected to the Workmen’s Compensa- streets of New York. He allied his thinking with ideas tion Program, which made it more profitable to from Germany, Canada, and France. Even before neglect the disabled than to restore them to activity World War I, he had joined a few pioneering thinkers and productivity. who were pushing to create self-sufficiency. They In 1936, the American Academy of Physical decided to create a rehabilitation facility in New York: Medicine & Rehabilitation was founded, and Dr. Krusen the Red Cross Institute for Crippled Soldiers and was elected as its first president. He wrote definitive Sailors. (It opened just after the war began.) texts, and his trainees were the first doctors trained to At the same time, the Army Surgeon General was care for the disabled. encouraging growth of allied health assistance. Soon In 1942, Dr. Howard Rusk started the Army/Air before World War I began, the American Occupational Force Convalescent Center at Jefferson Barrack Therapy Association was formed. Milbank developed Hospital in Missouri. The plan was that “convalescent a program to educate the country about the potential time” could be “rehabilitation time.” In New York, of people with disabilities by providing medical/voca- Dr. Rusk learned how to proceed from the Milbank tional assistance, training professionals, publishing Institute for the Crippled and Disabled and was able to literature, and establishing media contacts. broaden physical medicine in his burgeoning “conva- In about 1920, the state of Ohio created an organi- lescent program.” In the meantime, Dr. Krusen was a zation to work with crippled children, and the Shriners consultant in PM&R to the U.S. Army. He also con- opened hospitals for the care of these children. tinued to stress the need of education in PM&R. Simultaneously, care providers saw a growing In the war years, Bernard Baruch established the alliance in care among medical, surgical, and vocational/ Baruch Committee on PM&R. He laid the ground- psychological/sociological health care providers, which work for a great expansion in rehabilitation. Mr. set the stage for progression toward the collaborative Baruch gave grants for educating individuals and 1248———Physical Therapy established major centers in research and patient They have particular skill in bringing together all care at Columbia, the Medical College of Virginia, the facts at hand and being able to turn to members and NYU. Concomitantly, the number of occupational of the coalition who are best equipped to explain and therapists and physical therapists continued to grow deal with these matters. It is understood that there and receive acceptance as key personnel in military must be a sense of equality among members of the hospitals. team and universal, mutual respect for the talents The collaborative approach was even more firmly of all involved. Citizens in the United States are well demonstrated through the founding of spinal cord injury aware of the need for “coordination” in health care centers at Hines VA (Illinois), the Bronx (New York), and certainly in the case of people with disabilities; and Van Nuys (California). Dr. Paul Magnuson, who good care cannot be given without such talent avail- became the second medical director of the VA system, able. In all health care, these premises are valid. was first in charge of education and research and then headed the Dean’s Committee System, which linked Life is short, the art long, occasion sudden, experi- VA hospitals to academic centers. He later founded the ence fallible and judgement difficult. Not only must Rehabilitation Institute of Chicago. the physician show himself prepared to do what is needed, he must make the patients and attendants and In 1947, the denouement in officially recognizing the surrounding circumstances cooperate with him. PM&R occurred with the approval of the American (Hippocrates, 1st Aphorism) Board of Physical Medicine & Rehabilitation by the American Medical Association (AMA). The first three —Henry B. Betts certificates of specialization went to Dr. John Coulter, See also Decision Making; Professions; Rehabilitation Medicine, Dr. Walter Zeiter, and Dr. Frank Krusen. International.

Further Readings THE PM&R FIELD TODAY Dean, Russell J. N. 1972. New Life for Millions. New York: The vision statement for the Academy of Physical Hastings House. Medicine & Rehabilitation, the major professional Kessler, Henry H. 1935. The Crippled and the Disabled: Rehabilitation of the Physically Handicapped in the United organization for physiatrists, is as follows: States. New York: Columbia University Press. Magnuson, Paul B. 1960. Ring the Night Bell: The Autobiography The American Academy of Physical Medicine and of a Surgeon. Boston: Little, Brown. Rehabilitation will be the leader in assisting PM&R Rusk, Howard A. 1977. A World to Care for: The Autobiography physicians to acquire the continuing education, prac- of Howard A. Rusk, M.D. New York: Random House. tice knowledge, leadership skills, and research infor- mation needed to provide quality patient care, and to represent the best interests of patients with, or at risk ᨘ PHYSICAL THERAPY for, temporary or permanent disabilities. Physical therapy is a health profession serving The distinction of the field of PM&R lies today in persons of any age or health status with compromised its ability to deal with the technical issues involved physical functioning or the desire to improve their in diagnosing and treating disabilities/functional loss in current physical functioning. Typical clients are ways that can in great breadth affect the quality of life persons with compromised quality of life as a result of of the individual patient. The training of physiatrists impairments, functional limitations, and disabilities gives them a unique ability to unite in consideration of caused by disease or injury. Physical therapists com- the basic pathology, the psychology of the patient, the plete an examination of the individual and work with social environment and the effects of existing attitudes the person to determine goals that are reached pri- allied to the patient, and what might appear to be a marily through exercise prescription and functional “new identity.” training to improve movement. A key component of Physical Therapy———1249 patient management is education to promote physical Examination of the individual begins with identify- health and to prevent injury and disability caused ing the client’s perceived problems with functional by abnormal posture and movement. Other problems activities and his or her movement goals for reducing such as pain may be addressed with treatments, includ- disability and improving quality of life. Adults with ing mobilization of soft tissues and joints, electrother- the types of impairments and functional limitations apy, and other physical agents. described above can be taught how to recover or Although the use of exercise as part of a healthy improve movements impaired by disease and injury. lifestyle is ancient in its origins, modern physical ther- On the other hand, infants born with developmental apy developed in response to the needs of injured sol- disabilities are helped to learn movements they have diers. The first physical therapists in the United States never done before, with an emphasis on functional were trained to work with soldiers returning from mobility for satisfying participation in family and World War I and were called “reconstruction aides.” community activities. Some worked in hospitals close to the battlefields New areas of practice are continually developing. in France to begin early rehabilitation of wounded For example, the scope of practice of a growing spe- soldiers. Typical patients were those with amputated cialty in women’s health includes concerns of women limbs, head injuries, and spinal cord injuries. As the such as incontinence, pelvic/vaginal pain, prenatal field developed in the early part of the twentieth and postpartum musculosketelal pain, osteoporosis, century, physical therapists also attended to the move- rehabilitation following breast surgery, lymphedema, ment needs of those affected by polio epidemics. and education for prevention, wellness, and exercise. In this instance, strength was impaired by damage to All females across the lifespan, from the young ath- cells that activate muscles to create movement. For lete to the childbearing woman to the menopausal and these clients, physical therapists developed programs elderly woman, can benefit from physical therapy. to strengthen muscles when possible and helped In addition to working with individuals and their patients learn how to use the remaining musculature family members, many physical therapists have agen- to accomplish functional mobility activities. cies or organizations as their clients. In the role of Physical therapists now practice in a wide variety consultant, they perform services such as advising of settings, including private practices, hospitals, reha- clients on preventing back injury in workers or bilitation centers, nursing homes, public schools, and designing workplace environments to prevent repeti- home health agencies. In all of these settings, thera- tive use injury. Physical therapists also teach in higher pists work with the other members of the health care education institutions, specialize in areas such as the team toward common functional patient goals. Typical training of high-performance athletes, consult with clients are individuals with back pain, elderly persons public school teachers to educate children with dis- with arthritis or balance problems, injured athletes, abilities, and provide consultation to fitness centers infants with developmental disabilities, and persons on developing workouts for clients who already know who have had severe burns, strokes, or spinal cord they have joint or back problems. injuries. For all of these individuals, physical therapists Physical therapists (also called physiotherapists) are the experts in examining and treating muscu- are at work in countries all over the world. The World loskeletal and neuromuscular problems that affect how Confederation for Physical Therapy is a nonprofit people move and perform physical functions such as organization consisting of 82 national physical ther- standing up, walking, and lifting. Persons whose apy associations. The confederation represents endurance for movement is affected by heart or lung 225,000 physical therapists worldwide. In the United problems or other illnesses are also helped by exercise States, the American Physical Therapy Association and education to build activity tolerance, improve represents 64,000 physical therapists and physical muscle strength, and move efficiently during func- therapist assistants. The organization’s mission is to tional activities. Individuals with limb deficiencies are further the profession’s role in the prevention, diagno- taught to use prosthetic replacement devices. sis, and treatment of movement dysfunction and to 1250———Physician-Assisted Suicide enhance the physical health and functional abilities of that concatenates three terms, each of whose meanings the public. are clear and uncomplicated. However, even the most The Commission on Accreditation in Physical basic etymological exploration reveals a concept that Therapy Education accredits educational programs for sustains an inherent contradiction that is only the physical therapists who are trained at the master’s beginning of the problematization of what remains or doctoral level and for physical therapist assistants likely the single most critical issue in biomedical who complete a two-year associate’s degree program. ethics. Said contradiction lies between the notions of Physical therapy professional education involves “suicide,” the killing of oneself, and “assistance,” the grounding in basic sciences such as anatomy, phy- implication of another in that killing, which by defini- siology, and movement science followed by clinical tion renders the assistant an agent and, at times, science courses on the musculoskeletal, neuromuscular, depending on the circumstances of that killing, even cardiopulmonary, and integumentary systems. Educa- the sole agent in homicide, which may or may not be tion for the profession culminates in clinical fieldwork regarded as justifiable. In the simplest and most literal training involving internships of various lengths up to terms, then, assistance and suicide combine as—or at about a year. Although a graduate-level college degree least approximate—an oxymoron, although one whose and state licensure are required for practice in the practice, whether legal or illegal, is far from unknown. United States, physical therapy education in many Furthermore, moving only slightly beyond the most countries takes place in polytechnical institutions. basic sort of definition, physicians are universally known to be admonished to “do no harm,” a responsi- —Suzann K. Campbell bility that is necessarily, at the very least, difficult to See also Activities of Daily Living (ADLs); Health Care and reconcile with deliberately putting a “patient” to death. Disability; Occupational Therapy Physical Activity. A major complication in defining physician-assisted suicide is that it is frequently conflated and even Further Readings regarded as being synonymous with euthanasia or American Physical Therapy Association. 2001. Guide to Physical “mercy killing.” The terms are (obviously) not Therapist Practice, Revised, 2d ed. Alexandria, VA: (entirely) synonymous. The former assumes as an American Physical Therapy Association. absolute given the agency of a medical doctor. The lat- Campbell, Suzann K., Darl W. Vander Linden, and Robert J. ter does not, and this has often been borne out in prac- Palisano, eds. 2000. Physical Therapy for Children, 2d ed. Philadelphia: W. B. Saunders. tice. While it is customary to presume that both terms Couzens, Gerald Secor and Peggy Brill. 2001. The Core Program: assume the consent and even the explicit request of the Fifteen Minutes a Day That Can Change Your Life. New York: person who is killed, there is neither anything inherent Bantam. in the notion of euthanasia to safeguard that presump- Moffat, Marilyn, Terry Boles, and Steve Vickery. 1999. The tion, nor in the case of either term is it possible to arrive American Physical Therapy Association Book of Body at an unproblematic definition of consent given the Maintenance and Repair. Alexandria, VA: American Physical Therapy Association. abject vulnerability of a person whose circumstances lead to an intentional death being contemplated. Websites In practice, those seeking assistance in suicide typ- American Physical Therapy Association, www.apta.org ically do so either because their physical impairments World Confederation for Physical Therapy, www.wcpt.org are such that they render the act of self-killing impos- sible and/or they are unable to legally and/or easily procure adequate quantities of toxic substances ᨘ PHYSICIAN-ASSISTED that would facilitate a relatively painless demise. SUICIDE Generally, “patients’” motivations fall into two, often overlapping, categories: (1) those whose impairments Defining physician-assisted suicide might initially are so significant that they find the activities of daily appear a straightforward task, as it is an expression living impossibly difficult without substantial, though Pinel, Philippe (1745–1826)———1251 possibly unavailable, assistance and (2) those who Websites find their physical/emotional pain unbearable. Euthanasia World Directory, www.finalexit.org How any society responds to the question of The Kevorkian Papers, www.kevork.org physician-assisted suicide provides an important window into how it prioritizes the value and quality of life of its ᨘ individual members, one that forces an examination PINEL, PHILIPPE (1745–1826) of praxes of family units, health care delivery systems, One of the founders of modern psychiatry educational programs, and social service networks. The desire to die is often the ramification of the unavail- Philippe Pinel is considered by many to be the father ability of entirely feasible if currently/apparently of modern psychiatry. After the French Revolution, unavailable enhancements to the quality of life, includ- he was appointed physician to the infirmaries at the ing disability accommodations, educational and profes- Bicetre Hospital, which at that time housed 4,000 sional opportunities, emotional and logistical support, criminals, pensioners, and the sick, including many and palliative medical and/or psychological care. In with syphilis. Pinel focused his attention on the ward that context, the provision of and advocacy for the alter- housing 200 mentally ill men where he instituted a native of a quick, easy, and economical death as a solu- strict nonviolent, nonmedical management of patients tion to life’s challenges requires the utmost scrutiny. that became known as “moral treatment.” Although Laws regarding physician-assisted suicide are he gave due credit to his mentor, Jean Baptiste Pussin sometimes ambiguous. In the United States, the prac- (1745–1811), who had freed patients from their tice is legal only in the state of Oregon. It is also a shackles and invented the straightjacket, it was Pinel lawful practice in the Netherlands, Belgium, and who was credited for the improved management of Switzerland and was permitted for nine months in the the mentally ill. After he moved to the Salpêtrière Northern Territories of Australia, ending in 1997. The Hospital, he worked to assure that the shackles were practice is legal, though, owing to social opprobrium, removed from patients there. Pinel also put an end to practically nonexistent, in Japan. Whether physician- the bleeding, purging, and blistering “therapeutic” assisted suicide is right or wrong, its availability interventions for the mentally ill. He focused his ener- anywhere implicates medical doctors and biomedical gies on careful diagnosis developed through close ethicists who condone the practice. contact, observation, and extensive conversations In the United States, physician-assisted suicide with patients. He kept careful notes on his patients, achieved its greatest notoriety through the infamous which served as the basis of his book, Traité medico- “Dr. Death,” Jack Kevorkian, a pathologist who claims philosphique sur l’alienation mentale; ou la manie to have illegally assisted in dispatching over 130 (1801), translated in English as Treatise on Insanity “patients,” many obviously and almost surely treatably (1806). In 1795, he was appointed to the chair of med- depressed, others with conditions such as fibromyal- ical pathology, which he held for 20 years, and was gia, which threaten neither life nor general health and also named chief physician of the Salpêtrière, which for which palliative treatment is frequently available. he kept until his death. Since 1999, Kevorkian has been serving a 10- to 25- Pinel created an inoculation clinic at the year prison sentence for second-degree murder, the Salpetriere, where the first vaccination was given result of his participation in an assisted suicide. in Paris in 1800. In 1798, he published Nosographie philosophique ou methode de l’analyse appliquée à la —Alex J. Lubet médicine, which was, for the time, an authoritative See also Death; Ethics; Euthanasia; Quality of Life. classification of diseases. He was elected to the French Académie des Sciences in 1804 and to the Académie Further Readings de Médicine in 1820. His treatise on mental illness has Longmore, Paul. 2003. Why I Burned My Book and Other Essays had a long lasting influence on French, English, and on Disability. Philadelphia: Temple University Press. American psychiatry. He has been immortalized in 1252———Poetry paintings, prints, and by a statue situated outside the The speaker of this poem rejects the euphemistic Salpetriere. labels applied to her by a world that would prefer to not discuss disability and rather simply stereotype —Claude Wacjman her. Instead, she articulates an identity for herself. She claims a kinship with disabled people through history, including those hidden away, left to die, even executed ᨘ POETRY for their disabilities. Each time she rejects the euphemism, she replaces it with images that confound Poetry seeks to explore and validate the lived experi- common expectations for people with disabilities— ence of moving through the world with a disability. images of strength, of action, of sexual attraction and Sometimes referred to as crip poetry, disability poetry pleasure. The poem situates people with disabilities embodies a disability consciousness; it is informed by not in the margins but in the center of human experi- and contributes to disability culture. ence (“I’m the first cell divided,” “I’ve been forever Like the rest of the disability arts movement, I’ll be here forever”). By the end of the poem, she crip poetry rejects the view of disability as a shameful, has claimed negative terminology (“gimp,” “cripple,” pitiable, tragic, and individual phenomenon. Fundamen- “crazy”) for her own, transforming the terms with tal to crip poetry is an understanding of disability as a the final, triumphant assertion: “I’m the Woman With social construction. This is not a denial of the pain and Juice.” functional limitations that may come with impairment— Disability has typically been described by non- in fact, disability poetry is often informed by a height- disabled people. Another characteristic of disability ened awareness of those aspects of impairment. But crip poetry is that not only is it situated within the lived poetry is also sharply aware that a major part of the experience of disabled people, but it specifically impact that disabilities have on lives results from the comes from the perspective of people whose bodies ways those human differences are interpreted culturally and minds have been deemed anomalous. Whether and responded to by society, so often with prejudice, from wheelchair height or through impaired eyes or marginalization, and discrimination. Lynn Manning’s ears, crip poetry foregrounds an alternative perspec- poem “The Magic Wand” explicitly addresses this point tive. Sometimes, that alternative perspective is specif- when it describes the transformation the persona under- ically addressed in the poem, as in “Harvest” by goes, “from black man to blind man,” through the Stephen Kuusisto, when the speaker seeks to “admire simple act of unfolding his white cane. the white moon of the morning, / even if my eyes tell Disability poetry can be characterized by several me there are two moons.” characteristics: a challenge to stereotypes and an Embodiment is another characteristic of disability insistence on self-definition; foregrounding of the per- poetry. Crip poetry demonstrates an awareness of and spective of people with disabilities; an emphasis on sensitivity to the body, which may not be unique to embodiment, especially atypical embodiment; and poetry within a disability aesthetic but is certainly pre- alternative techniques and poetics. sent. This is not to suggest that disability poetry One of the major impulses of crip poetry is to resist is simply participating in a larger poetics of embodi- stereotyping and the limits of the socially imposed ment, which centers the body as the source of artistic “handicapped” identity through a process of self- production but also expects bodies to conform to definition. Disability poetry often explicitly rejects nondisabled expectations. Instead, with its attention to social pressure to pursue a forever-elusive “normality” alternative ways of being in the world, crip poetry and instead finds value and strength within disability seeks to redefine what it means to have and be a body experience, not in spite of impairments but because of in the world. In Mark O’Brien’s poem “The Man in and through them. This can be seen in Cheryl Marie the Iron Lung,” the speaker describes his dream life in Wade’s “I Am Not One of The,” in which the persona “the body electric,” which “inserts itself in the map of my forcefully rejects the labels that are applied to her. mind.” As it “whooshes beautiful lies of invulnerability,” Polio———1253 it forces its way not just into his lungs but into his Miller, Vassar, ed. 1985. Despite This Flesh: The Disabled in sense of who he is. Eli Clare describes a far different Stories and Poems. Austin: University of Texas Press. anomalous embodiment in “Learning to Speak”: “I Saxton, Marsha and Florence Howe, eds. 1987. With Wings: An Anthology of Literature by and about Women with practiced the sounds th, sh, sl / for years, a pianist Disabilities. New York: Feminist Press. playing endless / hours of scales. I had to learn / the Schweik, Susan. 2001. “The Voice of ‘Reason.’” Public Culture muscle of my tongue.” 13(3): 485–505. Because of this emphasis on exploding the limits of acceptable bodies in the world, embodying poems ᨘ through performance is an important part of disability POLIO poetry. Disability is centrally about bodies, how they look and act, and how they are construed, so this Although forgotten by many, polio was during the past embodiment is a crucial strategy. People with disabil- centuries one of the most widespread and devastating ities are often told to disregard their flawed, unsatis- diseases, leaving many persons with residual functional factory bodies; paying the attention that poems evoke limitations. The disease is not completely eradicated, and reward is a powerful antidote, one that is intensi- however, with a few new cases in some countries in fied and multiplied through performance. And, as with Asia and Africa during recent years. The major health other disability arts, events that include the perfor- problem is the late effects of polio with reduced mus- mance of crip poetry are an important site for the con- cle functions and other symptoms leading to increased tinuing development of disability culture. disability decades after the initial period. Alternative poetics can be found in disability poetry as well. Anomalous ways of moving through the world DISEASE AND PREVALENCE can lead to formal differences in poems; for example, using a respirator to breathe has significant potential to Polio (or poliomyelitis) is a virus-spread disease influence rhythms and use of the line. Cerebral palsy whose only known host is man. There are three types of had a significant impact on the poetry of Larry Eigner, polio virus (1, 2, 3), which is spread mainly through including the length of his poems—it was difficult for fecal-oral infection, usually through the water system. him to put a new piece of paper in his typewriter—and Polio has been accompanying man for a long time, and his distinctive use of space on the page. It is important archaeological dig-outs from Egypt have identified to note that alternative embodiment, cognition, and skeletons with changes after polio, from more than rationality do not guarantee alternative poetics, but 13,000 years B.C., and there are hieroglyphic stones anomalous ways of encountering the world seem likely with persons seemingly affected by polio. It has to influence a disabled writer’s poetry. been an endemic disease, but with increased hygiene, epidemics started. Large epidemics occurred in —Jim Ferris Scandinavia, North America, and Australia in the 1940s See also Art Therapy; Disability Culture; Representations of and later. The virus has a seasonal variation, with a start Disability, History of. in late summer and continuing during fall and declining in midwinter. The typical picture of a polio case starts Further Readings with an initial infection with slight upper respiratory Baird, Joseph L. and Deborah Workman, eds. 1986. Toward infection, general malaise with slight fever, fatigue, or Solomon’s Mountain: The Experience of Disability in Poetry. gastroenteritis. The disease could stop here (so-called Philadelphia: Temple University Press. abortive polio), but often within a few days up to a Davidson, Michael. 2002. “Missing Larry: The Poetics of Disability week, the meningitis would start. Fever occurs with in the Work of Larry Eigner.” Sagetrieb 18(1): 5–27. headaches and a stiff neck. While the fever is still ris- Ferris, Jim. 2004. “The Enjambed Body: A Step toward a Crippled Poetics.” The Georgia Review 58(2): 219–233. ing, the paralysis starts to occur, and after a few days, Fries, Kenny. 1997. Staring Back: The Disability Experience from the fever goes down but usually the paralysis stays. the Inside Out. New York: Plume. The paralysis is characterized by flaccid, asymmetric 1254———Polio paresis. The most common form is spinal polio, where During the recovery, after the initial infection, there is a the legs often are involved and the breathing muscles more or less pronounced reinnervation by terminal are often affected, giving reduced pulmonary function. sprouting from still-functioning motor units—a motor Cranial polio could affect the facial nerves but also the unit is the nerve cell, with its nerve and nerve branches lower cranial nerves. The so-called bulbar polio results and the muscle cells (fibers) connected to that nerve in paralysis of the throat and eventual paralysis of the cell. In that way, one of the same nerve cells may have swallowing process, with the gathering of secretion in innervated several times the normal number of muscle the throat and lungs, eventually suffocating the patient. fibers. This process leads to recovery of muscle func- The centers for breathing and circulation in the brain- tion, which even could become normal or near normal stem could also be affected. Cerebral polio is similar to in a polio-affected muscle. Besides that, the other com- other types of encephalitis, with a drowsy-person “slow pensatory mechanisms are increased size of the muscle cerebration,” but could lead to coma and death. The fibers (hypertrophy), which can be double the normal start of the vaccination era halted this. cross-sectional area in muscles used in daily life. Over The first vaccination was developed by Dr. Jonas time (often 20–30 years after the initial polio infection), Salk, who developed a vaccine that was a mixture of these compensatory processes may not maintain the the three virus types, which were killed with formalin. muscle strength. This may be due to several factors, Vaccination trials started, and the vaccine was avail- as further loss of nerve cells in the spinal cord (aging able in 1955, which ended the epidemics in the and/or overload) and less efficient reinnervation. Still, Western world. A new vaccine developed by Dr. Albert there is evidence of an ongoing reinnervation also at Sabin (approved for use in 1961), which was made of that age, with motor units that may contain five or even weakened virus strains and given orally, gained popu- more times the normal number of muscle fibers. There larity and is now the dominating vaccine in the world. may also be immunological factors involved in the During 2002, around 500 confirmed cases were deterioration of function. reported to the World Health Organization (WHO), Fatigue is a common symptom and can be muscu- and polio was still present as an endemic in Pakistan, lar due to muscular overload or reduced physical fit- Afghanistan, India, Nigeria, Niger, Egypt, and Somalia, ness due to a low level of activity; it can also be of a with a few cases in Ghana and Lebanon. The number central origin, to which damage in the central nervous of persons who have had polio and are thereby at risk system by the polio affection may contribute. Pain for late effects of polio is not known, but WHO esti- may be due to overload of muscles or joints and mates that there are up to 20,000,000 survivors in the connected to physical activity. Persons with previous world today. The risk for developing post–polio affection of respiratory muscles may experience further syndrome is not known, with reports ranging from breathing problems. around 25 percent up to 75 percent. This means that These impairments may lead to different levels of 5,000,000 to 15,000,000 persons might need to be in activity limitation, especially mobility, as the lower contact with the health system now and in the next 50 limbs are usually more commonly affected than the years for problems due to the late effects of polio. upper limbs. This may then lead to limitations in activities in household work, work, leisure time, and so on. The person will suffer an increasing amount of CONSEQUENCES OF POLIO disability. This situation has been named post–polio Polio survivors may experience different types of syndrome and is especially defined by increasing health problems. Dominating are new or increased muscle weakness. muscle weakness, general fatigue, pain in muscles and joints, and, for a smaller group, breathing problems. HEALTH CARE There may also be reduced tolerance to cold. The muscular symptoms are connected to the initial This new or increased disability situation requires loss of nerve cells in the anterior part of the spinal cord. medical analysis to understand the background factors Political Economy———1255 for that particular person and the possibility to give countries in the later decades, and it may be expected symptomatic help. Pain relief is important. Physical globally that there will be a large number of polio training may have positive effects on muscle strength survivors with medical and disability problems for and general fitness. Still more important is advice another half century. about the proper level of physical activity in daily —Gunnar Grimby and life to facilitate adaptation to a new life situation. Katharina Stibrant Sunnerhagen Technical aids are important for some persons, espe- cially mobility aids such as canes, crutches, wheel- See also Developing World; Disease; Infectious Diseases. chairs, or adapted cars. Orthoses may be given or renewed, especially in some cases of reconstructive Further Readings orthopedic operations. Screening for reduction in Managing Post Polio: A Guide to Living breathing function is important since some persons Halstead, L., ed. 1998. Well with Post-Polio Syndrome. Washington, DC: NHR may require assisted ventilation. Some people have Press. been dependent on ventilators since the initial infec- Halstead, L. and G. Grimby, eds. 1995. Post Polio Syndrome. tion; others need night ventilators. There may also be Philadelphia: Hanley and Belfus. psychological crises connected to the increased dis- Nollet, F., A. Belen, A. Twisk, G. Lankhorst, and M. de Visser. ability situation. 2003. “Perceived Health and Physical Functioning in Although acute polio occurred quite recently in Postpoliomyelitis Syndrome: A 6-Year Prospective Follow- Up Study.” Archives of Physical Medicine and Rehabilitation the Western world, knowledge about care for acute 84:1048–1056. disease has disappeared, and the teaching in medical Stibrant Sunnerhagen, K. and G. Grimby. 2001. “Muscular schools about the late effects is scarce. Therefore, not Effects in Late Polio.” Acta Physiologica Scandinavica many health professionals have knowledge about the 171:335–340. disease and the effects that might come with time. For Thorén-Jönson, A.-L. 2001. “Coming to Terms with the Shift in polio survivors, this can be a frustrating experience One’s Capabilities: A Study of the Adaptive Process in Persons with Poliomyelitis.” Disability and Rehabilitation when changes are occurring in their bodies and they 23:341–351. seek advice. This can lead to unnecessary contacts with different specialists in the health care system and Websites might prolong the correct diagnosis. Special clinics Global Polio Eradication, www.polioeradication.org have therefore been created to handle the late effects Post-Polio Health International, www.post-polio.org of polio.

ᨘ POLIO SUPPORT POLITICAL ECONOMY

In many countries, there are support groups available The political economy of disability seems like an for polio survivors. They can serve many purposes: arcane topic until we realize that the inexorable They give emotional support to the polio survivor and growth and aging of the world population, particu- next of kin, provide information about the disease, larly those with physical and mental disabilities, is help the polio survivor obtain health professionals who putting enormous strains on governments, economies, are knowledgeable about the disease, and lobby for and political systems in the developing and industrial more interest in the polio disease. The support groups worlds. Who will take care of these people? What are also involved in trying to get a more accessible systems can be put in place to deal with the problem? society and provide information about disability rights Who will pay for this and how? What will the burden in the society where they are active. Polio support groups be on our children and grandchildren? Disability is an have also been of great value, and the “polio-movement” issue that forces people to reassess their values and is considered strong in many Western countries. How- make painful decisions on how to allocate scare ever, new cases have appeared in several developing resources. 1256———Political Economy

DEFINITION by the dual diagnosis of alcohol and drug addiction. In this case, the justice system is being used as a “dump- Political economy is a perspective used in analyz- ing ground” for those with serious mental illnesses ing how money and politics shape behavior in social because their families are unable or unwilling to care institutions such as health and welfare systems. Polit- for them, and there is no county or state mechanism ical economists emphasize that studying the interde- for dealing with these people in the existing mental pendent operation of government and the economy is health system. In Africa, AIDS has become a similar essential for understanding the survival and growth unmanageable problem for families and governments of a nation and the configuration and operation of with meager resources to prevent the problem or care its institutions. Political economists are equally con- for those with a prevalent, deadly condition. Where cerned about how the demands of citizens influence AIDS used to be a condition that killed rather quickly, government and economic institutions such as the modern treatments and drug regimens have extended National Health Service in the United Kingdom, splin- life expectancy but often in a disabled condition. tered capitalistic health care systems in the United These HIV-positive individuals lose their capacity to States, and government-run, public health–oriented work and parent, thus requiring constant care and systems in Cuba. Interestingly enough, the vast dis- medical attention. The burden on families is enor- parities in per capita expenditures across nations do mous. In those regions where HIV prevalency is at or not seem to have similar large effects on health out- above 40 percent, entire generations are being deci- comes as measured by mortality, morbidity, and disabil- mated, with dire consequences for the oldest and ity. In fact, the most expensive system of all, the United younger generations. These examples are illustrative States, leaves more than 60 million citizens totally of an international phenomenon. While responsibility uninsured or dramatically underinsured and does not for caring for the vulnerable is being transferred from produce longer life expectancy than that of many the family to the state, the political and economic sys- other countries. Differences between these systems tems of most countries are not prepared to deal with can be explained by differences in values and economic these problems. People are living longer, and the and political systems. At the root of the issue lie dif- numbers of disabled people are growing. Individuals ferent decisions on how to identify and manage risk, typically have not saved enough for old age or antici- how to allocate scarce resources to those in need, and pated disability. Families often do not have the whether to believe in some sort of safety net. The resources or are not willing to pay for the care of their tagline always is, What do people need? What do they older and disabled members and do not want taxes want? Who is going to pay for this? And how much? raised in any form to do so. All of this leads to a cri- The consequences of these decisions are far reaching sis in the welfare state of industrial countries and because they speak to idealism, values, quality of life, insurmountable pressures on the economies of devel- and cross-generational responsibilities. oping countries. As populations age and the number of young workers paying taxes decreases, something THE STATE has to give. Savings and taxes must go up or the type, quality, and amount of services decrease. Because of global urbanization and changing values, people less often are living in extended family sys- VALUES tems where the family as a unit cares for the weak and vulnerable. Consequently, the elderly and disabled are Disability exacerbates the pressures put on social increasingly being thrown to their own devices and institutions by aging and vulnerable populations; raises become more a concern for the state. In the micro- difficult ethical issues such as abortion, euthanasia, cosm of Cook County, Illinois, for example, more and physician-assisted suicide; and questions the than half of the 4,000 current inmates of the county jail basic values of a society. Disability symbolizes the are judged to have mental illnesses, often complicated debate over quality of life for individuals and their Political Economy———1257 relatives and questions judgments about the lived services. While both of these approaches are informa- experience of disabled persons. Is living with a dis- tive in exploring disability in society, the political ability an unbearable experience to avoided at all economy of disability adds to the discussion by ana- costs? Should individuals or their relatives be able to lyzing the interrelationship between disabled people end their lives? If so, under what conditions, and who and political and economic institutions. This is impor- is to decide? What values and principles underlie these tant because the political and economic institutions decisions? These are questions that disquiet individu- and values that undergrid them will determine how als, family, and the state. For all of the espousal of disabled people are treated in a society. family values and respect for elders, adult children are Political economic values and institutions vary not eager to care for elders in their own homes and are from state to state. In the United States, considerable reluctant to pay for expensive assisted care living. The emphasis is placed on rugged individualism, capital- trend in North America and other industrialized, urban ism, “free markets,” and an “American” form of demo- countries is for more elders to live by themselves or in cracy. As a consequence, American funding for and institutions, particularly if they are disabled or at the support of disabled people is generally related end of life. to an individual’s ability to work and be economically Research studies complicate these discussions. There productive. In this sense, men are favored over women is growing evidence that many individuals with per- and children. American pundits say that American sistent and severe disabilities report a good or excel- health insurance is wonderful as long as you do not lent quality of life even though external observers have a serious or persistent health problem. This is might judge otherwise. Many disabled people are as really true for disabled people. Health insurance com- happy and enjoy life as much as those without dis- panies and the government try to limit the numbers abilities. Like anyone else, they have no desire to be and types of disabled people they cover. This is discounted, be left alone to fend for themselves, or euphemistically called “cherry picking.” The disabil- die. Given the aging populations in the world, the ity system is disjointed and often profit driven or risk trend is that more people will live longer with disabil- aversive. Since there is no integrated “safety net,” dis- ities exacerbating the existing problem and placing abled people frequently fall between the cracks and more strains on families and welfare systems. Faced have to rely on family and friends, live in an institu- with these issues, disabled people are becoming better tion, or live alone poor. Investigations after the incred- organized and more vocal. They are joining forces ible loss of life among the elderly and disabled in the with the elderly to exert more political pressure on the recent, severe summer heatwaves in Chicago and state to address their needs. Almost every disability France indicated that thousands died because they group has an organization that lobbies for their cause, were living alone, no one checked in on them during be it Alzheimer’s disease, multiple sclerosis, arthritis, this dangerous time, they were unable or afraid to go asthma, depression, or intellectual disabilities. It is out for help, they did not drink enough water, and they also clear that these people do not want to be made did not have fans or air-conditioning. In France, this dependent. They want to make or at least actively par- occurred during the national vacation time when the ticipate in decisions that affect their quality of life and vulnerable elderly and disabled were left alone. These future. problems are intensified because these vulnerable cit- These issues directly address the values of human izens are usually poor, so they cannot purchase assis- life and to whom. Utilitarian philosophers have exam- tive care if the family is not present. Disabled people ined these problems through the lenses of an individ- are either poor to begin with or the loss of work and ual’s worth to society and contribution to the common cost of dealing with their health and disability prob- good. Economists have spent considerable time lems deplete their resources. These dynamics illus- assessing the economic value of human life based on trate the dilemma that citizens face. Either they must age, sex, education, ability to participate in the labor care for their elderly and disabled in the family, or force, and capacity to pay for and consume goods and there must be an effective state system to do so. 1258———Political Economy

Absent either solution, these vulnerable populations abuses of the past 10 years. Executives of large will suffer and even die as in the case of the Chicago health care companies have been accused and con- and French heatwaves. victed of accounting irregularities, fraud, questionable marketing practices, and overpricing. The corporate THE MARKETPLACE jet, multimillion-dollar salaries, stock options, and golden retirement “parachutes” have become staples On the other hand, because there are large numbers of in the health care corporate world. HealthSouth is an disabled and dependent elderly people, private insur- example of such a multi-billion-dollar company. ance money, public funds, and personal resources While the corporatization of health and rehabilita- to pay for health care and rehabilitation goods and tion care has resulted in remarkable advances in services, a large industry has developed to define and health care and rehabilitation, it has driven up the respond to this multibillion-dollar annual market. cost of care to unprecedented heights, creating an Historically, disabled individuals received benefits if expanding chasm between those who can afford these they or their work were important to the national econ- goods and services and those who cannot. These omy: members of the armed forces, merchant seamen, forces raise fundamental questions about capitalism railroad workers, miners, and members of the govern- and democracy. What should be expected for all citi- ment. More recently, disability benefits were expanded zens as a minimum standard? Should there be a social to a much larger population through social security, safety net? Should health care and rehabilitation be social welfare programs, and employer-based private for profit industries in the private sector funded by insurance. As a consequence of extended coverage, government and private insurance? How will access demand for disability-oriented health care and rehabil- for all and equity be effected? The critical issue con- itation goods and services grew enormously. A mas- cerns who will protect the vulnerable populations of sive health care market niche for rehabilitation was any nation. created. In the past, families, local communities, and charitable organizations cared for disabled people. FUNDING AND RESPONSIBILITY Now, disability has become part of the capitalistic, free-market system where health care and rehabilita- While the issues are becoming clearer, their solution tion goods and services have become commodities is not. The problems of an aging population and increases for sale, frequently at a profit. This increasing com- in the numbers of disabled citizens are apparent. How modification and privatization of goods and services to structure a system that deals with these issues and enabled remarkable growth in the hospital, medical pays for them is not. It is clear that the very wealthy goods, pharmaceutical, insurance, and rehabilitation can afford to pay for their own care. What to do about industries from the 1980s to the present. Not only are those who cannot pay for this care out of pocket these industries some of the fastest growing in the affects every nation in the world. The existing models world’s stock markets, but they are also among the are no system (e.g., Sudan, Cambodia), national most profitable. As health care and rehabilitation health insurance (e.g., Canada, United Kingdom, goods and services became privatized, industry France, Sweden), mixed systems (e.g., Switzerland focused on forming companies to serve a need and and Japan), and a strong public health and primary to make a profit. At times, it is unclear which goal health care system with family support for the elderly predominates. Certainly, the size of corporations has (e.g., Cuba). Of those countries with some sort of sys- grown through mergers and acquisitions, expansion tem to deal with the elderly and disabled, each has of the market through advertising, and development attractions. The most attractive in terms of national of new products. Concurrent with the privatization of policy are those that provide universal coverage health and rehabilitation care has been the corporate at some minimum level. This is clearly the most Political Economy———1259 equitable solution, but the problem is funding. Who INFRASTRUCTURE will pay for it? AND STEWARDSHIP The funding issues immediately raise questions of responsibility. Whose responsibility is the care of the Here the expressed the rights, needs, desires, and elderly and disabled, and how should it be financed? demands of the individual collide with the greater While this is a contentious issue in many societies good of the community and all the citizens of the and raises unavoidable cross-generational tensions, state. Sometimes, these perceived needs and demands there are but a limited number of solutions. Resolu- are in concert; other times, they are not. In ethical tion of the problem will probably involve a combi- terms, should the needs and wants of the individual nation of strategies. Expectations will have to be supersede those of the larger community? The debate lowered. People will not receive services that is tinged by value systems. In the United States, great they and/or the nation cannot afford. Expectations of emphasis is placed on the rights of the individual, what constitutes a materially “good life” will have to whereas in European and Asian societies, more relative diminished—hence current attention being given importance is given to the primacy of the community. to “simplifying life” and spirituality. Taxes to support Hence, the discussion will be framed differently in an adequate welfare system will need to be increased. different countries. The age of retirement will need to be increased as These issues of demand for and allocation of scarce populations age into their 80s and 90s. Social secu- resources in society further lead to discussions of infra- rity and retirement systems were designed during a structure and stewardship. The quality of life of elderly time when life expectancy was in the early to mid- and disabled people is contingent on their access to 60s. These systems cannot sustain early retirement care, ease of use, appropriateness of treatment, and and life expectancies projected for an additional 30 cost of care (particularly pharmaceuticals). The pre- years. Immigration will continue to be a “hot button” sent U.S. and national health care systems of most issue. As populations age, more young people will be countries are not constituted to meet the increases in needed to work, pay taxes, and provide the goods demand of elderly and disabled people. Conse- and services required to sustain the elderly and dis- quently, they must be restructured. More physicians abled population. Since birth rates are unlikely to and health care workers knowledgeable with geri- increase dramatically, permitting the immigration of atrics, physically accessible facilities, transportation healthy, skilled young workers is the likely out- to and from places of care, home care services, come. This, in turn, will make societies more multi- redesigned accessible living quarters, and affordable cultural and intensify tensions between race/ethnic drugs and assistive devices are needed. These adjust- groups. ments need not cost more money, but they do require Rationing of health and rehabilitation care is a reallocation of resources. For example, new build- inevitable. Today, rationing occurs through the use of ings, homes, apartments, and health clinics can be health maintenance organizations (HMOs), managed constructed with a universal design in mind. Social care organizations, queuing in National Health Insur- support systems for these populations who can often ance systems, and copayments for diagnostic and be isolated need to be encouraged through more surgical procedures and for drugs. As costs of these family involvement, community activities, friend- goods and services continue to increase, more intense ship networks, and community-based home visiting rationing will occur. The heated debate that will ensue programs. will be over universal health coverage, inequities in Finally, the disabled and aging populations of the access to care and the rationing system, what con- the world suggest the problem of stewardship. If stitutes minimum standard care for all, and how much citizens want to leave the world a better place for care is enough. The economics of the situation will having been there, they will have to rethink how dictate limits on demand. they treat their physical and social environments 1260———Political Participation and the people they leave behind. There are many Jost, J. T., S. Blount, J. Pfeffer, and G. Hunyady. 2003. “Fair communitarians and community leaders who are Market Ideology: Its Cognitive-Motivational Under pinnings.” calling for a renewed emphasis on respect for our Research in Organizational Behavior 25:53–91. Light, D. W. 1997. “From Managed Competition to Managed physical and social environments and other people. Cooperation: Theory and Lessons from the British Experi- This requires a rethinking of how we use precious ence.” The Milbank Quarterly 75:297–341. resources and deal with our families and neighbors. ———. 2000. “The Sociological Character of Health Care All citizens of the world have an obligation to be Markets.” Pp. 394–408 in Handbook of Social Studies in trustworthy stewards of their own worlds and social Health and Medicine, edited by G. L. Albrecht, R. Fitzpatrick, lives. and S. C. Scrimshaw. London: Sage. McKinlay, J. 1974. “A Case for Refocusing Upstream: The —Gary L. Albrecht Political Economy of Illness.” In Applying Behavioral Science to Cardiovascular Risk, edited by A. J. Enelow and J. B. Henderson. Atlanta, GA: The American Heart See also Economic Analysis of Disability; Health Management Association. Systems; Managed Care; Social Support; Values. Melnick, G., E. Deeler, and J. Zwanziger. 1999. “Market Power and Hospital Pricing: Are Nonprofits Different?” Health Further Readings Affairs 18:167–173. Pretty, J. 2003. “Social Capital and the Collective Management of Albrecht, G. L. 1992. The Disability Business: Rehabilitation in Resources.” Science 302:1912–1914. America. Newbury Park, CA: Sage. Quadagno, J. 1999. “Creating a Capital Investment Welfare State: ———. 2001. “Rationing Health Care to Disabled People.” The New American Exceptionalism.” American Sociological Sociology of Health and Illness 23:654–677. Review 64:1–11. Albrecht, G. L. and Michael Bury. 2001. “The Political Economy Reinhardt, U. 1996. “A Social Contract for 21st Century Health of the Disability Marketplace.” Pp. 585–609 in Handbook of Care: Three-Tier Health Care with Bounty Hunting.” Health Disability Studies, edited by G. L. Albrecht, K. D. Seelman, Economics 5:479–499. and M. Bury. Thousand Oaks, CA: Sage. Rice, T. 1998. The Economics of Health Reconsidered. Chicago: Alt, J. E. and A. Alesina. 1996. “Political Economy: An Health Administration Press. Overview.” Pp. 645–674 in A New Handbook of Political Stone, D. 1984. The Disabled State. Philadelphia: Temple Science, edited by R. E. Goodin and H.-D. Klingemann. University Press. New York: Oxford University Press. Vladeck, B. C. 1999. “The Political Economy of Medicare.” Arno, P. S., C. Levine, and M. M. Memmott. 1999. “The Health Affairs 18:23–47. Economic Value of Informal Caregiving.” Health Affairs White, K. and F. Collyer. 1997. “To Market, to Market: 18:182–188. Corporatisation, Privatisation, and Hospital Costs.” Bates, E. 1999. “The Shame of Our Nursing Homes: Millions for Australian Health Review 20:13–25. Investors, Misery for the Elderly.” Nation 268:11–19. Wilkerson, J. D. 2003. “The Political Economy of Health in the Bennett, S., B. McPake, and A. Mills, eds. 1997. Private Health United States.” Annual Review of Political Science 6: 327–343. Providers in Developing Countries: Serving the Public Zola, I. K. 1989. “Toward the Necessary Universalizing of a Interest? London: Zed. Disability Policy.” The Milbank Quarterly 67:401–414. Carpenter, D. P. 2004. “The Political Economy of FDA Drug Review: Processing, Politics, and Lessons for Policy.” Health Affairs 23:52–63. Charlton, J. I. 1998. Nothing about Us without Us. Berkeley: ᨘ University of California Press. POLITICAL PARTICIPATION Flynn, R., G. Williams, and S. Pickard. 1997. “Quasi-Markets and Quasi-Trust: The Social Construction of Contracts for Grassroots political activism by people with disabil- Community Health Services.” Pp. 47–64 in Contracting for ities formed the basis of the disability rights move- Health, edited by R. Flynn and G. Williams. Oxford, UK: ment in the United States, leading to the passage of Oxford University Press. the Americans with Disabilities Act and other impor- Gilsdorf, J. R. 2004. “As Drug Marketing Pays Off, My Mothers Pays Up.” Health Affairs 23:208–212. tant laws. Despite these policy gains, however, recent Healtherington, M. J. 1998. “The Political Relevance of Political research indicates that people with disabilities remain Trust.” American Political Science Review 92:791–808. underrepresented in the political process, raising Political Participation———1261 concerns that their needs and interests are often Table 1 Comparison of U.S. Political Participation by People with and neglected and ignored by politicians and without Disabilities elected officials. The lower levels of political People with People without involvement can be largely explained by eco- Disabilities Disabilities nomic and social disparities faced by people Number of political 1.86 2.33 with disabilities, which often create barriers activities in the past that make political participation more difficult year (0-9 scale) but can spur some people to become disability Political activities activists. While there has been only limited (in percentages) research in this area, several studies shed light Voted 61.9 70.9 both on overall political participation among Written or spoken to 31.2 41.4 people with disabilities and on disability elected representative activism. or public official Worked with others on 22.1 29.0 community problem OVERALL POLITICAL Contributed money to 16.9 24.3 PARTICIPATION organization trying to influence government policy or laws Overall levels of political participation among Attended political 13.1 16.6 people with disabilities are significantly lower meeting than among nondisabled individuals in the Contributed money to 13.2 17.4 United States. In addition to being less likely political party or candidate to vote (for further information, see the Voting Written letter to 8.2 8.9 entry in this encyclopedia), people with dis- newspaper abilities are also less likely to work with others Otherwise worked 15.3 19.4 on community problems; write or speak to with groups or on one’s own to public officials; attend political meetings; change government contribute money to political causes, parties, or laws or policies 4.0 5.5 campaigns; write letters to newspapers; par- Participated in protest or march ticipate in political protests or demonstrations; or otherwise work to change government laws or policies. The following comparisons come from same time, however, such obstacles motivate others nationally representative surveys conducted in the to become and remain politically active, particularly United States in 1998 and 2000 (see Table 1). on disability rights issues. The factors affecting Women with disabilities have slightly but not sig- political participation in general can be divided into nificantly lower levels of overall political participation three categories: resources, recruitment, and psycho- than do men with disabilities, reflecting economic and logical engagement. Resources include money, educa- social disparities due to gender as well as disability. tion, time, and civic skills that facilitate participation— Nonetheless, they are about as likely as men with dis- for example, the ability to speak in public or write an abilities to vote, write letters to newspapers, and work effective letter to a public official. Recruitment net- with others on a community problem and are actually works expose people to requests for participation, more likely to take part in political protests or marches. and psychological engagement includes interest in Many people with disabilities face considerable political issues, feelings of political efficacy, and barriers, such as the lack of accessible transporta- other psychological factors. tion, stigma, and discrimination, that discourage People with disabilities tend to have fewer them from taking part in political activities. At the resources, including lower average levels of income, 1262———Political Participation education, and civic skills, which help account for their new status. This can be exacerbated by the often their lower levels of political participation. They are greater demands on time, energy, and financial also less likely to have vehicles they can drive, which resources during this period and helps explain why curtails their ability to engage in many types of polit- political participation is particularly low in the first ical activity outside the home. few years after disability onset. People with disabilities are also less likely to be Feelings of political efficacy are another impor- recruited for political activities, reflecting their gener- tant psychological factor that helps explain the lower ally greater social isolation. This is due in part to political participation levels among people with dis- transportation constraints and to the fact that people abilities. Compared to people without disabilities, with disabilities are more likely to live alone and they report lower average levels of both internal are less likely to have jobs, socialize with friends or political efficacy (the belief that one is competent to family, attend religious services, or regularly attend participate in politics) and external political efficacy groups where recruitment can occur. (the belief that the political system is responsive to Less than half of people with disabilities are people such as oneself). The lower levels of internal employed, and these low employment levels con- efficacy are largely explained by lower levels of edu- tribute to their low levels of political participation. cation and employment, but the lower levels of exter- Employment provides not just income and recruit- nal efficacy are not explained by other factors and ment opportunities that increase participation but also appear to be directly related to the experience of liv- opportunities for developing civic skills through activ- ing with a disability. Individuals with disabilities are ities such as leading meetings, giving presentations, or also much more likely to report that people with dis- participating in decisions at work. There is, in fact, no abilities do not receive equal treatment from public political participation gap between employed people officials or have equal influence in politics. Combined with and without disabilities, and the particularly low with their low external efficacy levels, these responses participation level of women with disabilities is partly indicate that people with disabilities tend to feel that explained by their especially low employment levels. the political system is not responsive to their inter- Regarding psychological factors, there is mixed ests. Such perceptions may result from internalized evidence on whether people with disabilities express “social constructions” of disability, which are popu- the same general level of interest in political issues as lar images of disability that are shaped by public people without disabilities. People with disabilities policies that send negative messages (for example, are more likely to express interest in public health care by stereotyping people with disabilities as dependent issues and to identify with the Democratic Party but and needy). have a similar average score on a liberal to conserva- Low levels of political efficacy can be part of psy- tive scale. When asked how disability has affected their chological responses to the experience of living with a political views, about half of people with disabilities disability. Among the variety of responses that individ- say that it has had no effect. Among those who say uals can have to disability, Renee Anspach (1979) and it has affected their views, about half say it has other writers have described how some people with increased their interest in disability-related issues, disabilities have a negative self-concept and respond to while smaller percentages say it has made political stigma, discrimination, and other disability-related participation more difficult, has made them more cyn- problems by developing an attitude of fatalism and ical and antigovernment, or has made their political helplessness. This discourages political involvement views more liberal. and can lead people to withdraw from society. The psychological impact of living with a disabil- Other psychological reactions to disability do not ity can be especially strong in the first few years after discourage political participation. Some people react onset, as individuals undergo a major life transition to the experience of living with a disability through and learn to cope with disability-related problems and “normalization”—trying to emphasize their similarity Political Participation———1263 to people without disabilities while ignoring or eradicated. They also perceive that their problems minimizing stigma, discrimination, and other disability- are widely shared and have a strong sense of identifi- related difficulties. Such people accept society’s deval- cation with others who have disabilities. Finally, activists uation of people with disabilities and try to maintain a perceive that many disability-related problems require positive self-concept by de-emphasizing their disabil- political, rather than purely individual, solutions. They ities. An extreme form of this response is character- emphasize changing policies, practices, and laws, rather ized by “role distance,” where people with disabilities than relying on self-help strategies such as developing try to separate themselves as much as possible from a “positive attitude” or learning how to put nondis- others who have disabilities and only associate with abled people at ease. nondisabled people. Those who normalize may People who become politically active on disability engage in standard political activities such as voting issues are more likely to meet regularly with disability but avoid political activities directly related to disabil- groups. Such groups can provide members with role ity issues. models, education on disability issues, recruitment networks for political activities, and a supportive envi- ronment for the development of a sense of identifica- DISABILITY ACTIVISM tion with others who have disabilities. It is important While the experience of living with a disability leads to note, however, that not all politically active people some people to retreat from society or practice nor- who work on disability issues work through groups. malization, it motivates others to become politically Some people are politically active on their own, active in an effort to end discrimination and improve engaged in private struggles to change laws or policies conditions for people with disabilities. The percentage as a result of discrimination or other negative experi- of people with disabilities who said they took some ences they have had. sort of action on a disability-related issue in the course Disability activists are more likely than other of a year is shown below (based on U.S. national people with disabilities to say that they have directly surveys in 1998 and 2000): experienced disability discrimination. This partly reflects a broader definition of discrimination. For Political activity on a disability issue 10.1 percent example, activists tend to define discrimination not (as part of one or more of the just in terms of intentional behavior but also in terms political activities listed earlier) of policies or practices that have discriminatory Took action against private organization 8.6 percent effects, such as architectural standards that create on a disability issue (e.g., talking inaccessible buildings. Disability activists also express to business owners, filing lawsuits) greater life satisfaction and a greater sense of control Either of above 14.8 percent over their lives and have higher levels of internal and external political efficacy than other people with dis- (Note: This does not equal the sum of the two previ- abilities. At the same time, they are less likely to ous activities because overlap has been eliminated.) believe that people with disabilities get equal respect from public officials, which helps motivate their Four basic perceptions appear to be linked to activism. disability rights activism. First, there must be recogni- The most committed activists have lived with their tion of the importance of disability-related problems. disabilities for a longer period of time on average, This is undermined by normalization where people consistent with findings on the psychological impact minimize or rationalize such problems. Second, in of disability onset. While some people describe becom- contrast to people with a fatalistic response, activists ing activists after being galvanized by a particular believe that many disability-related problems are not experience (for example, an act of discrimination or an inherent part of living with a disability and can be denial of needed services), others describe going 1264———Politics of Disability: International through a slow process in which they gradually learn disabilities will help them achieve equality, ensure to come to terms with living with a disability, fully that their voices are heard, and strengthen our democ- accept themselves, and identify with others who have ratic institutions. disabilities. Early in this process, they may go through —Lisa Schur stages of fatalism, role distance, and/or normalization but then learn to develop broader views of disability See also Activism; Participation; Voting. and discrimination, as well as an appreciation for the value of political action. Further Readings Those who have become leaders in the disability Anspach, Renee. 1979. “From Stigma to Identity Politics: rights movement, in particular, have learned to reject Political Activism among the Physically Disabled and the medical definition of disability in favor of a Former Mental Patients.” Social Science and Medicine sociopolitical definition that views environmental 13A:765–773. Gastil, John. 2000. “The Political Beliefs and Orientations of and attitudinal barriers as helping create disability. People with Disabilities.” Social Science Quarterly 81(2): Some people originally join disability groups for 588–603. nonpolitical reasons (for example, for recreation or Schur, Lisa. 1998. “Disability and the Psychology of Political needed services) but become politically active after Participation.” Journal of Disability Policy Studies 9(2): 3–31. being exposed to new issues and meeting politically ———. 2003. “Contending with the ‘Double Handicap’: Political Women and active people who serve as role models. The gradual Activism among Women with Disabilities.” Politics 15(2): 31–62. politicization of many activists suggests that there Schur, Lisa, Todd Shields, and Kay Schriner. 2003. “Can I Make are no apparent prerequisites for who can become a Difference? Efficacy, Employment, and Disability.” active in disability rights politics and that circum- Political Psychology 24(1): 119–149. stances—the types of groups, information, and Scotch, Richard. 1988. “Disability as the Basis of a Social opportunities that are available—often play a large Movement: Advocacy and the Politics of Definition.” Journal of Social Issues role in politicization. 44:159–172. Shapiro, Joseph. 1993. No Pity: People with Disabilities Forging In conclusion, overall political participation is a New Civil Rights Movement. New York: Random House. lower among people with disabilities than among the Shields, Todd, Kay Schriner, and Ken Schriner. 1998. “Influences general population. This disparity is accounted for by on the Political Participation of People with Disabilities: The factors such as lower resource levels, fewer recruit- Role of Individual and Elite Factors in 1984 and 1986.” ment opportunities, and lower political efficacy levels. Journal of Disability Policy Studies 9(2): 77–91. Voice and The barriers that discourage many people with dis- Verba, Sidney, Kay Schlozman, and Henry Brady. 1995. Equality: Civic Voluntarism in American Politics. Cambridge, abilities from fully participating in political life, how- MA: Harvard University Press. ever, also motivate others to become politically active on disability issues. While some people view their disability-related problems only as personal matters, ᨘ POLITICS OF DISABILITY: many others perceive political dimensions in the prob- INTERNATIONAL lems they face. Disability groups can play a particu- larly important role in this respect by providing role The politics of disability refers to the ongoing debates models, building group identification, and increasing over how disability definitions and programs shape exposure to political information and opportunities for what constitutes disability, who is identified as being participation. Overall political participation among disabled, and what resources a society will allocate to people with disabilities can also be encouraged by disabled people. Disability politics have come to the policies that decrease social isolation and increase forefront as increasing demands are made on state resource levels—for example, by creating better welfare systems and as nations experience serious educational and employment opportunities. Greater problems in coping with their aging and disabled political and civic participation among people with populations. Politics of Disability: International———1265

This entry conceptualizes the politics of disability certain characteristics from the overall group, through internationally and in a social and cultural context. defining a certain status as human beings, with rights First, at the fundamental level, the very existence of dis- and entitlements, and the right of society to take ability as a category of knowledge should be clarified. certain decisions. Disability as a linguistic term is a This is important in an international context because composite; it comprises people with a large variety of the social and cultural context in which disability is unrelated characteristics, yet through processes of framed has political consequences. Several authors separation and practices of defining society’s respon- report that the distinction between disabled and nondis- sibility to those who have been separated from the abled people is not known in certain social and cultural rest. This is, however, not a universal process. For contexts and hence of no political consequence. example, Holzer (1999) observed that in Juchitán, Second, in the study on the politics of disability, one Mexico, the distinction between disabled and nondis- would want to know how a person gets categorized as abled is not known. Such ethnographic examples may, disabled (i.e., the process by which one is assigned and however, make clear how the distinction is made in confirmed a label of disability and through which one other cultural contexts. acts as a disabled individual in a cultural and social The category of disability has taken form over context). Third, given the social existence of disability, the centuries. In the English language, the term cripple the next level of analysis is to explain how the very first took on connotations of designating all people distinction between disabled and nondisabled people, with identifiable disabilities. But it is undoubtedly through processes of socialization and social exclusion, the notion of “handicap” that is perhaps best known is maintained. This is a question of control and/or tol- for being able to apply a particular ideology to a erance for change. Fourth, the politics of disability con- group of people with varying types of disabilities, sists of the development of an ideology of thought, as namely, the ideology of equal chances. This ideol- found in the formulation of the social model of disabil- ogy was first developed in the United States, in the ity, and the building of coalitions to overcome the context of building a modern, industrial society. The historical distinctions between disabled and nondis- term handicap appeared in public discourse around abled people. In processes of identity formation, cultural the turn of the century (e.g., in development in the so-called culture of disability, and in 1905). From the United States, the ideology of social movement, power is used to redefine disability equality (through many different transformations and the relations between disabled and nondisabled known as integration or, more recently, as inclusion) people. From a disability studies perspective, the ques- reached most, if not all, societies in the world. The tion here is about the contours of a disability model that ideology of handicap reached Europe in the 1950s. pertains to different cultures. However, it appears in legal texts much later (e.g., The questions above are directed with the goal of in Belgium in 1967). In France, the year 1975 recontextualizing a Western perspective on disability. constitutes the essential moment of putting in place The intellectual benefit is to clarify meanings of dis- the politics of handicap. From that moment on, ability in other cultures as well as providing directions handicap serves as a unified field of intervention of studying and practicing the politics of disability that figures among other social politics. While internationally. handicap is no longer in favor in the United States and has largely been replaced by the term disability, THE POLITICS OF THE VERY at least in professional and legal language, the term EXISTENCE OF DISABILITY handicap survived in many other countries. Because of the many shifts in language, the use of terminol- The very existence of disability cannot be understood ogy in a text has become an object of careful expla- without taking into consideration the particular ways nation for many writers, as a matter of political in which Western society has separated people with consciousness. 1266———Politics of Disability: International

THE PROCESS OF which aim it is to explain the occurrence and the ACQUIRING PEOPLE BY A LABEL magnitude of the existence of disability. In such a perspective, societies are producing disability and dis- Social scientists have studied the process by which abled people. Disability in this perspective is the very people are enlisted by a label and the consequences of outcome of historical, economic, and political processes this enlistment for society. Perhaps the most early and that regulate. well-known studies are in the area of mental retarda- At the more intermediate level, Barral et al. (2000) tion. According to one definition of mental retarda- ask what social form do various organizations take tion, the number of people who could be identified that operate in the field of disability. What are the as mentally retarded could be as many as 16 percent structural or psychological characteristics of the poli- of the U.S. population. The identification of people as tics in which they are engaged, the status that is given mentally retarded evidently has direct consequences to individuals who are active within these organiza- for the provision of services and the spending of tions and in the movements that intend to represent public funds. Labeling people as mentally retarded disabled people? By investigating the laws in different added also to the stigmatization of people. This was countries, one can glean at the ways in which “the the case with a disproportionate number of ethnic national obligation” takes place. In France, this takes minorities identified as mentally retarded. This issue the form of a mission of prevention, follow-up, and put into perspective the cultural inadequacies of tests rehabilitation to which private initiative and public and, more generally, the politics of testing. action can be associated. On the other hand, it becomes The politics of testing in Jordan is put into necessary for the French state to install a way of con- perspective by what is being tested and what is left trolling private initiative so that disabled individuals out. According to Turmusani (2003), the only national are given a republican guarantee. survey ever conducted in Jordan (in 1979) used a def- inition of disability based on the concept of visibility THE DISABILITY MOVEMENT of impairment, meaning that persons with nonvisible or hidden impairments would not be perceived as dis- The politics of disability transcends all times and abled. The consequences are both positive and nega- societies. Indeed, the very existence or nonexistence tive since they would not be discriminated against but of the category of disability is the result of a negotia- also not be entitled to services. The political conse- tion process among individuals in society, a political quence at the national level would, however, be that process with social consequences. However, in recent disability would remain low on the public agenda. decades, a disability social movement has arisen in In The Disabled State, Stone (1984) describes how the aftermath of human and civil rights consciousness the medical profession achieves and exerts power as throughout the world. This development was both the gatekeeper in the process of entitling a person with spurred by the aftermath of World War II and the a particular label, thus giving way to a certain treat- development of the United Nations, as well as by ment by society. In many cases, the relation between the civil rights movements in the United States. In society and disabled people is here defined in terms of the early developments of the disability movement, employment as a contribution to society. Nonemploy- Scotch (1984, 1988) researched how disabled people ment can result from not being able to work, which could define themselves as a minority and how a dis- can in turn be the result from a contribution to society. ability movement could emerge in view of its own his- The distinction between “deserving” and “nondeserv- torical past. In many countries, the movements have ing” plays an important role in the determination of accomplished the passing of civil rights legislation, entitlements. such as the Americans with Disabilities Act in 1990. In In a broader framework of the relationships particular in the United States, the independent living between society as a governing body and disabled people, movement became a strong advocacy and practically one can speak of a political economy of disability, oriented means to implement the ideas of the disability Politics of Disability: International———1267 movement. The prominence of disability advocacy the social model of disability has been supported by and the passing of antidiscrimination legislation Marxist ideas that explained the material conditions evolved differently according to the social and cultural and the oppression faced by disabled people. In the contexts. In the United States, it is clearly connected United States, the social model became more readily with the civil rights movement and the prominence of interpreted in the analysis of ecologies (i.e., adapta- individual development. In most of Europe, the devel- tions between people and their environments) and opment of a disability movement was less strongly grew into increasing attention to the discriminatory developed, in part as a result of strong social security impact of systems and of language use. This also grew systems. Lee (2002) argues, mainly in reference to into considerable attention to representations of dis- Great Britain, that the disability movement has been ability in media, history, literature, and visual arts. rather unsuccessful in reaching out to the disabled During the 2003 European Year of Disabled population as a whole. Moreover, the movement has People, the key emphasis was on the ways disabled been dominated and fueled by a very particular con- and nondisabled people could work together and on stituency, notably those with strong physical and sen- the issues of physical, social, and informational acces- sory impairments, who are both relatively active and sibility. Such a European perspective therefore frames relatively young. On the other hand, the social disabil- disabled people as a political entity to be taken into ity movements in Southern African countries became account and also pushes attention to the politics of the strongly developed in conjunction with the struggle environment as the source of disability. In particular, against apartheid. In still other countries, the (lack of) as a follow-up to the International Year, the European prominence of the disability movement could be Union maintains its goals of achieving equal treat- clearly connected to military and government regimes ment in employment and adds goals such as rein- (for examples on Asian countries, see Charlton 1998). forcing mainstreaming of disability issues in relevant The disability movement was supported by some slo- policies and accessibility for all. gans that intended to express the required attitude The proliferation of difference in postmodern times changes (e.g., “ability, not inability,” “no pity,” and has led many groups to claim their own identities and “nothing about us without us”), expressing wide dis- social movements. For disabled people, this has conse- parities in the political demands. Following Oliver quences as such proliferation leads at first glance to (1990) and Lee (2002), it can be supported that the “forgetting” the difference. Lee (2002) argues that as disability movement ought to be characterized as the environment becomes the focus, it is suggested that a new social movement. It is indeed internationalist, differences can simply melt away. This is a politically aims at empowerment and consciousness raising, offers dangerous idea since it minimizes the necessary social a critical evaluation of society, lies at the periphery of care and accommodations that disabled people require. the conventional political system, and can be seen to The difference of disability is equally challenged focus on the quality of life of a particular section of by the intersection with other groups, such as women, society. elderly people, and ethnic minorities. In many cases, The academic and theoretical framework in support coalitions with other groups appear to have political of the social movement of disabled people and the implications (for an example, see Iris 2003). emergence of what became known as “disability stud- A future disability model that pertains to different ies” has been the “social model of disability.” This social and cultural contexts and to the impact of glob- model was first launched primarily by sociologists alization will have to respond to the fact that various and political scientists, some of whom had themselves forms of modern society are found throughout the disabilities and engaged as both advocates and acade- world. In such modern societies, disability is under- mics. This model was usually defined in opposition to stood with different degrees of emphasis on religious, either an individual or medical model of disability. biomedical, and social-political components. Such a In terms of knowledge, an overall focus on the social future model could be called “cultural” in the ways it construction of disability became central. In Britain, can integrate existing dichotomies that dominate the 1268———Politics of Disability: Policies and Protest current understanding of disability. A cultural model Rethinking Disability: The Emergence of New Definitions, would equally emphasize certain universal character- Concepts and Communities, edited by P. Devlieger, F. Rusch, istics of the world today (such as the importance of and D. Pfeiffer. Antwerpen, Belgium: Garant. Lee, Phil. 2002. “Shooting for the Moon: Politics and Disability at information and the media) and of disability (such as the Beginning of the Twenty-First Century.” Pp. 139–161 in its challenge of existing cultural orders and therefore Disability Studies Today, edited by C. Barnes, M. Oliver, and its potentially transforming impact on society). Last, a L. Barton. Cambridge, UK: Polity. cultural model would be sensitive to our modes of McDermott, Ray P. 1993. “The Acquisition of a Child by a communication as these are affected by historical and Learning Disability.” Pp. 269–305 in Understanding cultural developments in the use of spoken and writ- Practice: Perspectives on Activity and Context, edited by S. Chaiklin and J. Lave. Cambridge, UK: Cambridge ten language, visual imagery, technologies, and aes- University Press. thetics. Research on the politics of disability that is Mercer, J. 1973. Labeling the Mentally Retarded. Berkeley: steered by such a cultural model of disability would University of California Press. continue to emphasize how new modern societies cre- Oliver, Michael. 1990. The Politics of Disablement. London: ate orders by overcoming old categories and develop- Macmillan. ing new ones that once again produce disability. Pfeiffer, David. 2003. “The Disability Studies Paradigm.” Pp. 95–106 in Rethinking Disability: The Emergence of New —Patrick Devlieger Definitions, Concepts and Communities, edited by Patrick Devlieger, Frank Rusch, and David Pfeiffer. Antwerpen, See also Activism; Developing World; Politics of Disability: Belgium: Garant. International. Ryan, Joanna and Frank Thomas. 1987. The Politics of Mental Handicap. Rev. ed. London: Free Association Books. Further Readings Samoy, Erik and Frans Lammertyn. 1998. Sociaal Beleid ten Behoeve van Mensen met een Handicap. Leuven, Belgium: Albrecht, Gary. 1992. The Disability Business: Rehabilitation in Acco. America. Newbury Park, CA: Sage. Scotch, Richard K. 1984. From Good Will to Civil Rights: Barral, Cathérine, Florence Paterson, Henri-Jacques Stiker, and Transforming Federal Disability Policy. Philadelphia: Michel Chauvière, eds. 2000. L’Institution du handicap: Le rôle Temple University Press. des associations. Rennes: Presses Universitaires de Rennes. ———. 1988. “Disability as the Basis for a Social Movement: Charlton, James I. 1998. Nothing about Us without Us: Disability Advocacy and the Politics of Definition.” Journal of Social Oppression and Empowerment. Berkeley: University of Issues 44:159–172. California Press. Skrtic, Thomas M., ed. 1995. Disability & Democracy: Recon- Commission of the European Communities. 2003. Equal structing (Special) Education for Postmodernity. New York: Opportunities for People with Disabilities: A European Teachers College Press. Action Plan. Brussels, 30.10.2003, COM(2003) 650 final. Stiker, Henri-Jacques. 2000. Pour le débat démocratique: La Devlieger, Patrick. 2003. “From ‘Idiot’ to ‘Person with Mental question du handicap. Paris: CTNERHI. Retardation’: Defining Difference in an Effort to Dissolve It.” Stone, Deborah A. 1984. The Disabled State. Philadelphia: Pp. 169–188 in Rethinking Disability: The Emergence of New Temple University Press. Definitions, Concepts and Communities, edited by P. Devlieger, Turmusani, Majid. 2003. Disabled People and Economic Needs in F. Rusch, and David Pfeiffer. Antwerpen, Belgium: Garant. the Developing World: A Political Perspective. Burlington, Gliedman, John and William Roth. 1980. The Unexpected VT: Ashgate. Minority: Handicapped Children in America. New York: Harcourt Brace Jovanovich. Hahn, Harlan. 2002. “Academic Debates and Political Advocacy: The US Disability Movement.” Pp. 162–189 in Disability ᨘ POLITICS OF DISABILITY: Studies Today, edited by C. Barnes, M. Oliver, and L. Barton. Cambridge, UK: Polity. POLICIES AND PROTEST Holzer, Brigitte. 1999. “Everyone Has Something to Give: Living with Disability in Juchitán, Oaxaca, Mexico.” Pp. 44–57 in DISABILITY AND POLITICAL ACTION Disability in Different Cultures, edited by B. Holzer, A. Vreede, and G. Weigt. Bielefeld, Germany: Transcript. People with disabilities frequently occupy marginalized Iris, Madelyn. 2003. “The Common Agenda of Aging and social, economic, and political positions in contempo- Disabilities: Stalemate or Progress.” Pp. 149–167 in rary societies, positions that are only likely to change Politics of Disability: Policies and Protest———1269 through effective political action. In recent decades, the case of disabled veterans, who typically self-identify people with disabilities have increasingly sought to par- primarily as veterans who have earned the right to ticipate collectively in decisions about public policy, social assistance through their service, rather than as both specifically about disability issues and more gen- people with disabilities who have needs related to erally about issues related to participation in gover- their impairments.) nance and the distribution of power. While people with Taking the lead, rather, are organizations for rather disabilities are almost universally constrained by stigma than of people with disabilities—often charitable and limited resources, their political status varies con- organizations or professional service providers led siderably across societies, according to how disability by nondisabled individuals. Political initiatives of is socially constructed. this variety frequently emphasize the incapacity asso- In the medical model of disability, which has been ciated with disability, as well as the moral blameless- predominant in Western culture since the nineteenth ness of “deserving” disabled people, unable to help century, disability is considered an individualized themselves, whose conditions have been acquired attribute dispersed across the general population through no fault of their own. Such political discourse rather than a commonly held position and thus is per- frequently features tales of woe about people, particu- ceived as not naturally forming the basis for collective larly children, whose lives will be ruined by their impair- political activity. Many disability issues are nominally ments unless help is given. apolitical, as disability is viewed as inextricably linked Many public officials are reluctant to appear insen- to impairment and more a matter for professional treat- sitive to appeals by those perceived as helpless and ment than for political action. blameless, and such political appeals have often been Within this construct, whether one has a disabil- quite successful. At issue in such political discourse ity has important consequences, and gatekeeping, the is often the moral entitlement of those who are definition of who is and is not considered to have a “afflicted,” which is based on their impairment being disability, is considered to be a scientific interpreta- based on random victimization rather than their own tion linked to impairment and thus is typically man- choices and behavior. Thus, political debates over dis- aged by medical and rehabilitative professionals. People ability benefits frequently involve questions of moral with disabilities themselves often are not considered entitlement. With the gatekeeping role usually taken to have an appropriate role in public debates over who by medical professionals, efforts have been made is entitled to claim public benefits or other entitle- to medicalize a number of conditions to entitle those ments attached to the disabled status. who have them to a flow of benefits and services However, there are considerable political implica- earmarked for the “deserving” poor. Questions of tions within the medical model of disability. Within personal responsibility may arise, with debates over this conception of disability, the primary question public funding benefiting people with chronic condi- within the politics of disability is reallocative—to tions widely considered to be morally questionable, what extent public resources should be devoted to such as HIV/AIDS, psychiatric disorders, addiction to medical and rehabilitative services for treatment and alcohol or illegal drugs, or learning disabilities. to benefits accorded to maintain people with disabilities, Nonmedical models of disabilities are associated who are judged incapable of self-sufficiency. Since with quite different political forms, issues, and dynam- disabled people are also considered to be incapable of ics. A sociopolitical model of disability conceptualizes self-advocacy within this context, such disability disability as a social and political construction that is politics are typically engaged in by nondisabled advo- the result of interaction between physical or mental cates rather than by people with disabilities themselves. impairment and the social environment. Technology, Thus, in many historical accounts of disability policy architecture, and spatial organization all reflect con- debates, people with disabilities are rarely character- cepts of what is “normal” and how “normal” people ized as major political actors, either individually or as function, as do cultural attitudes and institutional an organized interest group. (A prominent exception is processes. These social characteristics help to define 1270———Politics of Disability: Policies and Protest who is “disabled” and who is “normal,” as well as what is not solely the province of medical and rehabilita- constitutes an appropriate social response to those tion professionals but can be contested by many who have a disability. within society, particularly by people with disabilities The politics of disability takes far different forms themselves. within the sociopolitical model than would be expected in the medical model. Political issues are not DISABILITY IDENTITY AND simply reallocative, although disputes over resources POLITICAL REPRESENTATION are found here, too, but may also include conflict over what social roles can appropriately be played by indi- Disability politics increasingly involves advocates who viduals who have disabilities and how the state should have disabilities, although individuals with disabilities support or restrict those roles through its policies. A do not necessarily share the political perspective held by sociopolitical model of disability would lead one to the majority of people with disabilities within a society. expect political conflict over issues such as the appro- The label of having a disability may be taken or rejected priate role for people with disabilities in education, by individuals with impairments as well as by others. In employment, public services such as transportation, some instances, vanguard groups have celebrated their economic development, and participation in civic life. identity as people with disabilities, promoted disability Organizations composed of people with disabilities are culture, and embraced a belief in “disability pride.” For prominent in such political activities, groups whose others, stigma is perceived as associated with disability. membership and leadership are individuals who them- People may be reluctant to self-identify as disabled; they selves have disabilities. may seek to hide their impairment or to portray its effect By characterizing the social isolation and enforced on their lives as minimal. Even people with significant dependency of people with disabilities as the result impairments that interfere with important life functions of social choices rather than as inevitable results of may not consider themselves to be in a similar situation impairment, the sociopolitical model suggests analo- as others with the same impairments, let alone with quite gies between the social status of people with disabili- different ones, and may be unwilling to be visibly asso- ties and other marginalized groups such as racial ciated with them. and ethnic minorities, women, or gays and lesbians. Even when individuals self-identify as disabled, Within this political framework, disability politics can having a disability does not in itself inevitably lead to encompass disputes over civil rights (in the American participation in collective political action with others context) or human rights (in the European context and who have disabilities. Many political constituencies in non-Western societies around the world). Similarly, form on the bases of spatial propinquity and/or out of politics encompasses conflicts over the role of dis- already socially cohesive groups. Because impairments abled people collectively in the governance of service are spread spatially and demographically throughout systems and other institutions addressing the dis- the general population, people with disabilities may ability community and the role of individuals with not find themselves in naturally occurring communities disabilities in shaping and controlling the services they of their peers; they typically grow up within families of receive. people who do not share the experience of disability In recent decades, as the dominance of the medical and must seek out others like themselves. Thus, while model has diminished, the sociopolitical model has some disability advocates commonly refer to the “dis- become more prevalent. In such a sociopolitical model, ability community,” those who actively identify with people with disabilities may be grouped together into this community may include only a portion of the common medical, educational rehabilitative, human substantial number of people with disabilities in any service, and custodial systems, but the establishment of society. such systems and the definition of who is to be consid- One issue that often arises within disability politics ered disabled vary across cultures and historical periods. is that of who may legitimately represent the broader Gatekeeping under a sociopolitical model of disability disability community, which is diverse in terms of Politics of Disability: Policies and Protest———1271 impairments, demographics, socioeconomic status, and There are numerous examples of people with cultural perspective. This dilemma is reduced when disabilities engaged in protests or forming organiza- diverse people with disabilities representing a variety tions on their own behalf. In the past four decades, of constituencies are engaged in politics, rather than a political activity by individuals with disabilities and few token individuals purporting to represent a single organizations of disabled people has particularly disability community. At the high end of representa- increased, and much of that activity has been directed tion, for example, a total of approximately 47,000 toward the goals of equal access, community integra- Ugandans with disabilities serve in the country’s gov- tion, and independent living. Among the explanations erning bodies, including 40,000 who have been that have been offered for this increase are emerging elected at the village level. medical and assistive technologies that have supported This strong national presence of persons with independence for many people with disabilities, chang- disabilities is unique, but increased political participa- ing ideologies of treatment that have encouraged non- tion by people with disabilities has occurred in many institutional service strategies, and the models of nations around the world, often in accordance with other minority movements in the 1960s and 1970s that growing democratization and concerns about repre- advocated for inclusion and social change. sentation of diverse minority interests. In the Soviet Union, along with a number of other political organi- LEGAL ADVOCACY zations founded in the wake of the Helsinki Accords in the late 1970s, the Action Group to Defend the Some efforts to redefine the social position of people Rights of the Disabled in the USSR was founded in have occurred through legal advocacy in the courts, 1978 to advocate for legal rights for Soviets with dis- particularly in the United States. Enabled by the dis- abilities. In the Philippines, a national political party tinctive American constitutional and legal framework was recently established to represent the interests of and building on the civil rights advocacy that fought disabled persons. racial segregation through federal lawsuits in the post– Many individuals with disabilities have challenged World War II era, a number of class action suits were the legitimacy of political representation by anyone successfully pursued in the late 1960s and 1970s on but those who themselves have disabilities. These behalf of children denied public school education advocates question whose interests actually are because of their disabilities, people with disabilities advanced by nondisabled service providers and con- receiving inappropriate treatment in residential insti- tend that only people with disabilities should speak on tutions, and others denied fair treatment because of their own behalf. Such issues of representation have their disabilities. These lawsuits were often the prod- been applied to parents or other family members of uct of advocacy groups representing parents of children disabled individuals; some contend that parents with disabilities working in partnership with public should be viewed as a part of the “disability commu- interest law centers. nity” and allowed to represent that community in Key judicial rulings have helped to establish legal political forums, while others strongly disagree. These protections for disabled people and foster the growing questions become even more complex when applied disability rights movement in the United States. In the to individuals with severe cognitive or psychiatric American disability policy context, with its emphasis impairments who may have difficulty articulating their on civil rights, legal advocacy has been a crucial com- own interests in political discourse. However, when- ponent in ensuring that broader public policies are ever disability is created as a social category, particu- applied appropriately to individual cases. Legal orga- larly through public policy and the provision of health nizations such as the Disability Rights Education and and social services, those defined as having a disabil- Defense Fund and the Bazelon Center for Mental Health ity have the potential to become a distinct political Law have been valuable resources in the protection of interest group that may become capable of mobiliza- individuals with disabilities. Yet in the absence of more tion and political action. broadly based political advocacy, litigation-based 1272———Politics of Disability: Policies and Protest political strategies tend to be episodic and non-self- PEOPLE WITH DISABILITIES enforcing and may have a limited capacity to effect AS POLITICAL CANDIDATES institutional change. Such advocacy is most effective AND ELECTED OFFICIALS when it is part of a wider political mobilization of people with disabilities on their own behalf, a process Persons with disabilities hold or have held elected that requires both social solidarity and collective offices in several countries, and this may help to shape action. the electorate’s response to people with disabilities and the problem of disability. These include Joshua Malinga of Zimbabwe, who was mayor of Bulawayo; Joseph Sinyo of Kenya, a member of the national ELECTORAL POLITICS parliament; Kalle Konkkola, who has served on the city Participation in electoral politics is a potentially council of Helsinki, ; Midori Hirano, of Japan, important avenue for people with disabilities to secure who was elected in 1998 to the Kumamoto Prefecture; their political voice, yet Americans who have disabil- a Philippines congressman, Ernesto Herrera; and sev- ities are much less likely to register and vote than eral individuals with disabilities who have served or are are nondisabled individuals. For example, in the serving in the national parliament of South Africa. 1994 election, 56 percent of people with disabilities Informal observations of U.S. politics indicate that were registered to vote, as compared to 71 percent of disability is often an issue in campaigns, particularly nondisabled individuals; only 33 percent of people contests for the presidency. In the 1996 American cam- with disabilities reported voting, as compared to 54 paign, for example, the Republican Party candidate, percent of nondisabled individuals. Senator Robert Dole, was a World War II veteran who While there has been little research on possible had lost the use of his arm from an injury sustained in explanations for this pattern, one factor may be acces- combat, whose disability was labeled a badge of honor. sibility of the polling place, where individuals with The Democratic Party candidate, Bill Clinton, is not disabilities may encounter a variety of architectural disabled, but the Democratic national convention barriers. Another issue is the receptivity and respon- featured an address by Christopher Reeve, an actor siveness of election officials. At times, election offi- who had become quadriplegic after a riding accident. cials may become sufficiently frustrated with meeting Reeve, a controversial figure in the U.S. disability accessibility needs, so they urge the disabled voter to community, issued a plea for funding for research to vote absentee, although some individuals with disabil- cure paralysis. In neither of these instances was civil ities view absentee voting as an inferior form of par- rights for people with disabilities a major focus of ticipation. People with mental retardation, blindness, the campaign message, although in both parties’ cam- or deafness are sometimes subjected to challenges paigns, disability rights was a minor emphasis. or have to encounter election officials who are unin- Because they tend to be less affluent than non- formed about their accommodation needs or who disabled individuals, people with disabilities around resist taking the necessary steps to make the voting the world are less likely to have the wherewithal to process or polling place accessible. contribute money, time, or other resources to political In addition to these physical and attitudinal barri- candidates. To the extent that these circumstances ers, policy barriers may affect participation. In the make their voice less likely to be heard in the electoral United States, 44 states disenfranchise some individu- process, people with disabilities will be disadvantaged als with cognitive and emotional impairments, and in democratic governance. England’s Representation of the People Act 1983 disenfranchises people who have been involuntarily LOBBYING AND PRESSURE GROUPS admitted to mental hospitals. Similarly, the constitu- tion of Albania prohibits voting by individuals who In addition to participation as elected officials or have been adjudicated incompetent. through political parties, disabled people in many Politics of Disability: Policies and Protest——1273 nations have formed organizations whose purpose is to ‘disability rights movement.’ We had never thought represent the disability community and influence gov- about disabled rights as a cause, to the disabled com- ernmental bodies responsible for the enactment and munity as a community....It was a shift from look- implementation of public policy. While there is a long ing at disability as a health issue, to looking at it as a history of political activity by and on behalf of people human rights issue.” with disabilities, disability politics has become far Perhaps the most established political role for more widespread in the post–World War II era, partic- disability advocates has been in the United States, ularly in the last three decades of the twentieth century, where a number of organizations maintain active building on the example of similar movements for lobbying roles in Washington and many state capitals. self-determination and inclusion by other politically Representatives of disability organizations in the marginalized social groups around the world. United States played an extensive and significant role In recent decades, a number of umbrella organiza- in disability policy development in the 1970s and tions have been formed to coordinate political activity 1980s. In Scandinavian nations, disability policies have and speak with one voice on behalf of the disability been shaped by disabled representatives of community- community. In Great Britain, for example, the British based disability organizations. Organizations of people Council of Disabled Peoples (BCODP) formed in 1981 with disabilities in many other countries, including to represent 80 organizations and approximately Canada, Singapore, England, Ireland, and the 200,000 Britons with disabilities. In the United States, Netherlands, have participated in the reformulation of the American Coalition of Citizens with Disabilities outdated disability policies. was organized in 1975, with 19 constituent groups. In Most American disability policies since the Canada, the Coalition of Citizens with Disabilities mid-1970s, including the landmark Americans with (CCD) was founded in 1976 with affiliates from most Disabilities Act, have been drafted with the active Canadian provinces. In Denmark, De Samvirkende participation of representatives of organizations of dis- Invalideorganisationer (DSI) has been active for decades abled people, and in the 1990s, many appointed gov- in promoting the integration into Danish society of ernment officials responsible for making and enforcing with disabilities. government disability policies were recruited to their Parallel to the formation of these national coali- posts from organizations of people with disabilities. In tions has been the creation of cross-national coali- a number of instances, the prior connections among tions. Some international groups have organized government appointees from the disability movement around specific disabilities, such as the African Union have meant that the long-standing absence of commu- of the Blind, founded in 1987, whose activities have nication and cooperation among competing public been supported by the Norwegian Association of the bureaucracies has been overcome. Blind and Partially Sighted. In 1981, Disabled Peoples’ While access to positions of power and influence International (DPI) was formed, an international has had many important benefits for the disability com- cross-disability coalition of more than 110 organiza- munity, it has often created dilemmas for those hold- tions, including many from developing nations in ing them, who must balance their loyalties to their Latin America, Africa, and Asia. DPI has been partic- constituencies with the practical considerations of public ularly active in advocating for disability rights in policy making. Nevertheless, since so many aspects of international governmental and particularly non- life for people with disabilities are shaped by public governmental activities, as well as in supporting the policy, institutionalized participation in policy debates development of organizations of people with disabili- within government appears to have incorporated the ties around the world. Pelka (1997:103) quotes Joshua experience of disability into many policy decisions. Malinga, a former DPI chairperson from Zimbabwe, Where regular participation does not occur, however, who remembered the 1980 organizational meeting of disability advocates may need to turn to more con- DPI in Singapore: “It was at this meeting that most of tentious nonelectoral political action to represent their us from Africa first understood what was meant by a own interests. 1274———Poor Laws (United Kingdom)

PROTEST POLITICS Barnartt, Sharon and Richard Scotch. 2003. Disability Protests: Contentious Politics: 1970–1999. Washington, DC: Gallaudet Disability protestors have been willing to confront public University Press. officials, block traffic, occupy public places and govern- Campbell, Jane and Michael Oliver. 1996. Disability Politics: Understanding Our Past, Changing Our Future. London: ment offices, or be arrested for their causes. In 1972, for Routledge. example, members of the cross-disability group Disabled Charlton, James I. 2000. Nothing about Us without Us: Disability in Action blocked traffic in the New York financial Oppression and Empowerment. Berkeley: University of district. In 1981 in Canada, coordinated national pro- California Press. tests were organized by the Council of Canadians with Christiansen, John B. and Sharon N. Barnartt. 1995. Deaf Disabilities to advocate for a Human Rights Amendment President Now: The 1988 Revolution at Gallaudet University. Washington, DC: Gallaudet University Press. to protect the civil rights of Canadians with disabilities. Driedger, Diane. 1989. The Last Civil Rights Movement: Disabled Through much of the 1980s, members of ADAPT Peoples’ International. New York: St. Martin’s. (originally Americans Disabled for Accessible Public Fleischer, Doris Z. and Frieda Zames. 2001. The Disability Rights Transit) chained themselves to buses and disrupted Movement: From Charity to Confrontation. Philadelphia: meetings of the American Public Transit Association Temple University Press. to protest inaccessible public transportation. Following Gooding, Caroline. 1994. Disabling Laws, Enabling Acts: Disability Rights in Britain and America. London: Pluto. the enactment of the Americans with Disabilities Act, Hahn, Harlan. 1985. “Introduction: Disability Policy and the ADAPT changed its name to Americans Disabled Problem of Discrimination.” American Behavioral Scientist for Attendant Programs and has conducted numerous 28(3): 293–318. protests against the unnecessary institutionalization of Oliver, Michael. 1990. The Politics of Disablement. London: people with disabilities in nursing homes. In 1988, Macmillan. deaf students at Gallaudet University in Washington, Pelka, Fred. 1997. The ABC-CLIO Companion to the Disability Rights Movement. Santa Barbara, CA: ABC-CLIO. D.C., forced the closure of their campus for a week, Schriner, Kay, Lisa A. Ochs, and Todd G. Shields. 1997. “The Last demanding that a deaf person be hired as university Suffrage Movement: Voting Rights for People with Cognitive president. British organizations of people with disabil- and Emotional Disabilities.” Publius 27(3): 75–96. ities have engaged in similar disruptive tactics; Scotch, Richard K. 1984. From Good Will to Civil Rights: Gooding (1994:160) cites a 1993 New Statesman Transforming Federal Disability Policy. Philadelphia: report of a national register maintained by the Direct Temple University Press. ———. 1988. “Disability as the Basis for a Social Movement: Action Network of more than a thousand disability Advocacy and the Politics of Definition.” Journal of Social activists willing to take part in civil disobedience. Issues 44(1): 159–172. Typically, protests involve not just short-term objec- ———. 1989. “Politics and Policy in the History of the Disability tives but also a sense of shared purpose based in a vision Rights Movement.” The Milbank Quarterly 67(Suppl. 2, Pt. 2): of an alternative to existing social arrangements. The 380–400. goal of an inclusive, barrier-free society may motivate Shields, Todd G., Kay Fletcher Schriner, and Ken Schriner. 1998. “The Disability Voice in American Politics: Political disability activists beyond the specifics of an exclusion- Participation of People with Disabilities in the 1994 ary policy or demeaning practice. It is such a vision that Election.” Journal of Disability Policy Studies 9(2): 53–76. will increasingly serve as the basis for disability politics. Switzer, Jacqueline V. 2003. Disabled Rights: American Disability Policy and the Fight for Inequality. Washington, DC: —Richard Scotch and Kay Schriner Georgetown University Press. See also Activism; ADAPT; Advocacy; Disability Pride; Lobbying; Politics of Disability: International; Voting. ᨘ Further Readings POOR LAWS Barnartt, Sharon, Kay Schriner, and Richard Scotch. 2001. (UNITED KINGDOM) “Advocacy and Political Action.” Pp. 430–449 in Handbook of Disability Studies, edited by Gary L. Albrecht, Katherine The English poor laws consist of the parliamentary D. Seelman, and Michael Bury. Thousand Oaks, CA: Sage. legislation, as well as subsequent practice, related to Pope, Alexander (1688–1744)———1275 the public relief and control of the impoverished, to work. In 1834, a new poor law was enacted that including the disabled poor. The period from 1531 created a uniform national system, with parishes join- to 1834 is known as that of the old poor law, with an ing together in unions running workhouses controlled emphasis on parochial, predominately noninstitutional, by Boards of Governors. Outdoor relief was signifi- provision (outdoor relief). From 1834 to 1929, the new cantly curtailed. The disabled had to be prepared to poor law involved national supervision and extensive enter the workhouse to be relieved. Conditions within use of workhouses. some of the workhouses were appalling. Responding to concerns about the social order and In 1929, the Local Government Act officially influenced by Christian humanism, the sixteenth- abolished the Boards of Governors and workhouses, century elites passed legislation initially to punish although many related aspects of the poor laws con- vagrants but later to identify and relieve needy pau- tinued to be implemented for some time. pers. In 1572, England became the only country in Throughout the history of the poor laws, the actions Europe to permit parish authorities to regularly levy of the disabled poor themselves were an important poor rates (compulsory property taxes). In 1598 and factor in the growth of the system, as well as changes 1601, further legislation required parishes to levy rates, in practice, particularly at the local level. The disabled to punish vagrants, to provide outdoor relief (usually increasingly felt entitled to relief and negotiated as a pension) for those disabled to work, and to provide best they could to that end. work for the able-bodied. Further legislation included —Geoffrey L. Hudson a 1662 act establishing settlement laws limiting migra- tion and providing a way for paupers to establish a See also Poverty; Veterans. right to relief in their “home” parish (usually where they were born), with the right to appeal to local justices Further Readings of the peace. Higginbotham, Peter. 2004. “Poor Laws.” Retrieved December 13, In the seventeenth century, the system spread in 2004 (http://www.workhouses.com/). practice throughout the country, and pension numbers Hudson, Geoffrey. 2000. “Disabled Veterans in Early Modern and levels grew substantially. Disability to work was England.” Pp. 117–144 in Disabled Veterans in History, the test in practice, with the elderly, those disabled edited by D. Gerber. Ann Arbor: University of Michigan Press. on the job, the feebleminded, and war widows given Pelling, Margaret. 1998. The Common Lot: Sickness, Medical priority. Medical care was provided. Institutions were Occupations and the Urban Poor in Early Modern England. increasingly established (almshouses, workhouses). London: Longman. From 1593 to 1679, thousands of disabled veterans were Slack, Paul. 1988. Poverty & Policy in Tudor & Stuart England. relieved via a statutory, county-based pension system London: Longman. English Local administered by county justices and paid for by taxes Webb, Sidney and Beatrice Webb. 1927–1929. Government: English Poor Law History. 2 vols. Edinburgh, (after 1679, the central government took over this UK: Longmans, Green and Co. responsibility). From 1700, workhouses increasingly included infir- ᨘ maries that provided medical care. It has been argued POPE, ALEXANDER (1688–1744) that the sick and disabled had more control over their Eighteenth-century English poet lives and bodies on out-pension (noninstitutional) than in-house (institutional). Others argue that the infir- Alexander Pope, eighteenth-century England’s most maries provided much-needed medical attention for celebrated poet and his generation’s most frequently those with disabling conditions such as syphilis. “Out portrayed celebrity, dominated the emergent literary relief” continued, with relief manipulated by employ- marketplace as the first self-supporting, nonplaywrit- ers to top up and consequentially depress wages. ing professional author while fascinating his audience The costs of the poor law came under increasing as a spectacle of deformity. Characterizing the career scrutiny, with many assuming the poor were unwilling of a wit as “a warfare upon earth” and complaining in 1276———Postcolonialism his Epistle to Arbuthnot of “this long disease, my life,” ᨘ POSSESSION this master of the heroic couplet endured a war between an exceptional mind and a body lambasted as “at once See Witchcraft resemblance and disgrace” of humanity’s “noble race.” Barely four and a half feet tall when grown—in Voltaire’s words, “protuberant before and behind” ᨘ POSTCOLONIALISM (speculation as to the cause of his deformity has ranged from tuberculosis of the spine contracted from a wet Only recently have scholars in both disability studies nurse, to trampling by a cow, to excessive study)— and postcolonial studies attempted to explore the and socially disenfranchised for his Catholicism, intersections between these two areas of scholarship. Pope transformed his marginality into a vehicle for self- Disability studies’ scholars have ventured into global reflection, self-representation, self-possession, and contexts to explore the intersection of disability and self-legitimation. His life’s work was the ultimate cou- culture in comparative perspective and/or have plet of deformity and poetic form. Mocked early on as explored the impact of globalization on disabled “the ladies’ plaything” for a best-selling translation of people internationally. However, they have only very Homer appealing to a nonaristocratic and female audi- rarely situated these same discussions within the polit- ence (a serious attempt at post-Miltonic epic refracted ical space of postcoloniality—a space that postcolo- in his mock-heroic mirror The Rape of the Lock), at his nial scholars would argue provides a very different career’s close, the Tory satirist cast himself as a hyper- analysis of the global. masculine epic hero embodying moral integrity in an Postcolonialism, in its broadest representation, age of beautiful hypocrisy. Radically conservative in foregrounds the effects of imperialism and exploita- his final nostalgic critique of British economic and tion as a result of the colonization of specific cultures imperial progress, innovative in his exploitation of the and societies, but this representation has itself been literary marketplace, Pope embodied, negotiated, and widely contested. While on one hand, the term post in redefined the ambiguities of his age. When the curtain postcolonialism clearly highlights a historical dimen- falls at the end of The Dunciad and “universal Darkness sion to the discussion (i.e., “after” colonialism), this buries all,” Pope’s couplet art concludes triumphantly position has been contested by other postcolonial by envisioning art’s destruction. scholars who argue that colonialism has become trans- historical because the effects of imperialism and —Helen Deutsch exploitation continue to affect the former colonies via See also Poetry. the neoliberal policies of globalization. Other post- colonial scholars have broadened this focus to include Further Readings discursive analyses of postcolonial culture that fore- Deutsch, Helen. 1996. Resemblance and Disgrace: Alexander ground contradictions, ambiguities, ambivalences, Pope and the Deformation of Culture. Cambridge, MA: and ruptures. In this case, the post in postcolonial Harvard University Press. foregrounds a more nuanced discourse that supports Mack, Maynard. 1982. “‘The Least Thing Like a Man in “going beyond” materialist analyses of contemporary England’: Some Effects of Pope’s Physical Disability on His Life and Literary Career.” Pp. 372–392 in Collected in culture to foreground radical possibilities of move- Himself: Essays Critical, Biographical, and Bibliographical ment, fluidity, and mobility that produce hybrid (post- on Pope and Some of His Contemporaries, edited by colonial) subjects. Maynard Mack. Newark: University of Delaware Press. It is in engaging Otherness that scholars in both Nicolson, Marjorie and G. S. Rousseau. 1968. This Long Disease postcolonial studies and disability studies find common My Life: Alexander Pope and the Sciences. Princeton, NJ: ground, especially in their deconstructive analyses of Princeton University Press. Stephanson, Raymond. 2004. The Yard of Wit: Male Creativity how representation, hegemony, and normativity pro- and Sexuality, 1650–1750. Philadelphia: University of duce both the postcolonial and the disabled Other. For Pennsylvania Press. example, postcolonial studies scholars have described Postcolonialism———1277 how the colonized body has been constituted as ways,” and though they were nondisabled, they were the abject Other when situated in opposition to the exhibited alongside native-born Americans with dis- “civilized, civilizing, [and] normal” body of the colo- abilities. One of the most famous examples of such nizer. Similarly, disability studies scholars have also an exhibit was the “Hottentot Venus,” whose enlarged demonstrated how the Western paradigm of knowledge labia and buttocks were accentuated to foreground has produced specific ideological representations her savage sensuousness and mark her as measurably of the “normate” through a series of exclusions that different from the European woman. Moreover, in constitute the disabled Other as outside the purview of another blatant distortion of presentation that brought rights-bearing humanity. together both disability and colonialism, native-born These ideological representations of the colo- Americans with disabilities were misrepresented as nized and disabled Other often draw on the presumed savage foreigners (e.g., Ohio-raised dwarfs as the interrelationships between physiognomic factors and “Wild Men from Borneo”; African Americans with social/geographical environments. For example, even microcephalus from Alabama as members of the though John Langdon Down (Jackson 1999) recognized Ituri—a head-binding African tribe). While such differences between those he termed “mongoloid idiots” exhibits at the freak shows were arguably presented as and the “real Mongols,” he still saw what he claimed entertainment, at the same time, they also provided a were unmistakable similarities and considered these quasi-scientific basis for the justification of both slav- combined physical and mental features of this ethnic ery and colonialism by depicting the nonwhite world group as pathognomonic of a distinct and prevalent as childlike, barbaric, and dangerous and therefore in class or type of idiocy. Even though this was refuted in desperate need of the civilizing influence of the West. later years, the racial assumptions inherent in his study A critique of Western science and its devastating continue to persist such that, on one hand, “mental effects on both the disabled and the colonized Other is defectives” became metaphorically as well as literally yet another commonality shared by both postcolonial “a race apart,” and at the same time, the racialized and disability studies scholars. According to post- Other was seen as “mentally defective” and in dire need colonial scholars, Western medicine, armed with an of civilization via colonialism. As a result, just as it was enormous battery of tests and discursive practices imperative that attempts be made to tame the savage that focused specifically on the physical and mental racialized Other in the colonies, the minds and bodies constitution of the colonized body, extended its reach of the “idiot,” the “imbecile,” and the “feebleminded” beyond mere scientific interest to explore and use its were also to be subdued and domesticated in the segre- knowledge to further the authority, legitimacy, and gated internal colonies of state institutions. control of the colonial state. Describing a similar The oppressive interrelationship between disability history of the asylum on Robben Island, South Africa, and colonialism was epitomized in the freak show, a postcolonial scholarship describes how the racial popular form of entertainment that had its heyday in superiority of the white settler over the African native the United States from 1840 until about 1940. Of was codified in the science of ethnopsychiatry. Unlike particular interest to this discussion are those “freaks” the European “madman,” whose insanity was seen who were exhibited as the exotic mode. This was a as physiological, the African “madman’s” insanity mode of presentation that accentuated the culturally was attributed to his racially determined incapacity to strange, the primitive, the bestial, and the exotic. cope with the stresses of urbanization and civilization Promoters of the shows claimed that their exhibits and was therefore provided physical rather than psy- came from mysterious parts of the world—darkest chological therapy, with the therapeutic purpose of Africa, the wilds of Borneo, a Turkish harem, and an introducing the African to civilization. Such examples ancient Aztec kingdom. Many of these exhibits were demonstrate how Western science used specific non-Western people with demonstrable physical dif- ableist and racist discourses to justify European con- ferences who were exhibited in the exotic mode by trol of its colonies even in the face of Enlightenment emphasizing their anomalies as well as their “strange ideals of universal humanity. 1278———Postcolonialism

With this oppressive context as their historical the radical possibilities for the “disabled” postcolonial backdrop, postcolonial subjects have attempted to subject in this context as it enters into a combat over distance themselves from what they perceive as a meaning by using one cultural/symbolic system stigmatizing context of disability and, in doing so, have against another. This space where disability and post- failed to realize the emancipatory possibilities of forg- coloniality intersect has been described as the “third ing a political alliance with disabled people. In fact, dimension,” where the Self can no longer be contained postcolonial scholars, for the most part, almost never within the simplistic binary of Self/Other, thereby recognize disability as a political construct and, as a producing an identity that is both ambivalent and result, seldom include disability in their analyses of muted. Located now at the point of slippage between difference. When disability does appear in their analyses, identity categories, the disabled postcolonial subject it is often used as a metaphor to describe the colonized appears as the “evil eye”—the figure that resists the condition. image of totality that is critical in the myths used by For example, postcolonial analyses have explained both the colonizer and the colonized. However, some how, under the censorship of Japanese colonialism, scholars have been quick to point out that postcolonial Korean writers often drew on the trope of disability to authors often fail to capitalize on this radical potential create characters who lacked freedom in bodily func- of disability in their novels and have instead charac- tion and movement. Casting their literary work in terized the disabled body as a docile body against metaphorical terms as the textual body impaired by which nationalist tensions can be arbitrated and against the violence of colonialism, these writers overturned which a rationalist ideology can pull “a collection of traditional views of disabled people as abject citizens disparate peoples into a self-identified nation” by recasting them along with the colonized (disabled) (Lacom 2002:141). In this way, national identity is nation-state as a bearer of rights. The silencing of consolidated so as to maintain the differentiation of these writers by colonial censors also represented a the national “us” from aliens within and without. shared critical relationship with disability such that Unfortunately, such efforts fail to serve the interests of just as the physically disabled were constituted as both the postcolonial and disabled subjects because objects of colonial hygiene and social control, these they continue to support oppressive representations intellectuals were also constituted as objects of invested in tragedy and exoticism. thought control and censorship. In this way, Korean Just as postcolonial scholars have used disability writers produced literature that was encoded with as a metaphor to represent their oppression under anticolonial and anticapitalist messages of protest by colonial rule, disability studies’ scholars have also using disability as the discursive means to articulate appealed to the metaphor of colonialism to depict and various positions of their colonial destiny, ranging explain the social oppression of disabled people. For from internal critique and self-criticism to objection example, some scholars describe the harsh and delim- of their unfree colonial situation. iting educational segregation of students with disabil- The radical potential of disability in postcolonial ities in U.S. public schools as mimicking the historical literature is also echoed by various postcolonial liter- trajectory of colonialism. Others point out that just as ary critics. According to these analyses, because the emerging European states drew on particular notions postcolonial subject is forced to enter into a multiple of normality to support their project of imperialism, symbolic order (e.g., colonial, native, and post- these same states looked inward at the human varia- colonial/neocolonial contexts), he or she is forced to tion among their own people and produced a form of go through (as per Lacanian psychoanalytic theory) internal colonization that supported a dehumanizing multiple castrations to achieve wholeness and, as a view of disability. In educational contexts, in particular, result, experiences symbolic deformity—entering into these oppressive beliefs about disability have resulted a condition, sometimes problematically described as in disabled students experiencing a “pedagogy of “disability.” At the same time, some scholars also realize control” that, according to authors, mirrors the forced Postcolonialism———1279 labor and absolute confinement that was experienced where the cost of each intervention is weighed against by those living in the colonies. In addition, scholars the person’s potential “productivity’ (i.e., contribution have likened the struggles for equal schooling for to economic growth). Here postcolonial disabled citi- disabled students as a effort that has zens who are unable to work are awarded zero value sought to challenge the social hierarchies that have and therefore have little or no entitlement to health reduced disabled students to the status of defective services at public expense. In this context, postcolonial and dependent citizens. conditions are seen to once again support the oppres- What is apparent in the previous examples is that sion of disabled citizens. the metaphoric representations of both the colonized —Nirmala Erevelles and disabled Other hold emancipatory possibilities for each other. At the same time, these metaphoric See also Freak Show; Globalization; Poverty. discourses of Otherness sometimes fail to account for and/or describe the actual experiences of disabled Further Readings postcolonial subjects living in the former colonies Arnold, David. 1993. Colonizing the Body: State Medicine and that constitute the so-called Third World. Already Epidemic Disease in Nineteenth-Century India. Delhi, India: living in impoverished conditions in nation-states Oxford University Press. incapable of providing an economic safety net for Bogdan, Robert. 1988. Freak Show: Presenting Human Oddities for Amusement and Profit. even their nondisabled citizens, disabled citizens Chicago: University of Chicago Press. Charlton, James. 1998. Nothing about Us without Us: Disability living in postcolonial contexts continue to struggle Oppression and Empowerment. Berkeley: University of for survival amid conditions of abject poverty; unem- California Press. ployment; lack of adequate medical care, education, Choi, Kyeong-Hee. 2001. “Impaired Body as Colonial Trope: and assistive technology; and the denial of basic Kang Kyong’ae’s ‘Underground Village.’” Public Culture human rights. 13(3): 431–458. These conditions have been exacerbated in recent Deacon, Harriet. 1999. “Racial Categories and Psychiatry in Africa: The Asylum on Robben Island in the 19th Century.” years by the neoliberal policies of the World Bank and Pp. 101–122 in Race, Science and Medicine, 1700–1960, the International Monetary Fund, which support eco- edited by W. Ernst and B. Harris. New York: Routledge. nomic austerity measures to be implemented by Erevelles, Nirmala. 1998. “Bodies That Do Not Matter: Social countries that had defaulted in their payment of debts Policy, Education and the Politics of Difference.” Ph.D. dis- incurred as a result of more than a century of colonial sertation, Department of Cultural Foundations of Education, economic exploitation. These austerity measures, called Syracuse University, Syracuse, NY. Jackson, Mark. 1999. “Changing Depictions of Disease: Race, structural adjustments policies (SAPs), are specifically Representation and the History of ‘Mongolism.’” Pp. 167–188 designed to cut public spending in the areas of health, in Race, Science and Medicine, 1700–1960, edited by W. Ernst education, and public welfare in an attempt to support and B. Harris. New York: Routledge. sustained economic growth and eventually lead to a Kliewer, Christopher and Linda May Fitzgerald. 2001. reduction in poverty. However, as a result of these poli- “Disability, Schooling, and the Artifacts of Colonialism.” Teachers College Record cies, there has been a drop of 10 to 25 percent in average 103(3): 450–470. Lacom, Cindy. 2002. “Revising the Subject: Disability as ‘Third incomes, a 25 percent reduction in spending per capita Dimension’ in Clear Light of Day and You Have Come on health, and a 50 percent reduction in spending per Back.” NWSA Journal 14(3): 138–154. capita on education in the poorest countries in the McRuer, Robert. 2004. “Wish You Were Here; or, An Accessible world—material conditions that set the stage for the World Is Possible.” Z Magazine. Retrieved on July 20, 2004 social construction of disability. In addition, the World (http://www.zmag.org/content/showarticle.cfm?SectionID=47 Bank uses the concept of the DALY (disability-adjusted &ItemID=3905). Upreety, Sanjeev Kumor. 1997. “Disability and Postcoloniality in life years) to prioritize health interventions by calculat- Salman Rushdie’s Midnight’s Children and Third-World ing their relative cost-effectiveness measured by the Novels.” Pp. 366–381 in The Disability Studies Reader, number of DALYs saved through each intervention, edited by J. Davis-Lennard. New York: Routledge. 1280———Poster Child

ᨘ POSTER CHILD on how the money is used. In fact, many disabled individuals oppose using contributed money for vari- Poster children are persons with disabilities portrayed ous types of therapy (e.g., surgery and physical therapy), in the media (e.g., newspaper, television, and publicly preferring instead that it be used to provide disabled displayed posters) to encourage the public to donate individuals with necessary aids to live full and produc- money to organizations set up to help persons with tive lives and to make built environments more acces- disabilities. Most of the general population views dis- sible. The organizations tend to deny the various ability as a statistical tragedy and often is not familiar criticisms or insist that the protestors’ opinions are not with anyone who has a disability. In portrayals of representative of larger groups. poster children, the emphasis tends to be placed on the The portrayals of poster children may have a difficulties these individuals face, and the language negative impact on disabled children, especially tends to be negative, referring to the persons with dis- those without disabled adult role models, because the abilities as victims and sufferers who spend their life children may learn to view their disability as a defect waiting for a cure. Poster children tend to be children that needs to be cured. By overemphasizing the strug- because it is easier to portray children than adults as gles in their lives, the children may reject (this part of) innocent victims. The vivid portrayal of the “tragedy” themselves. This rejection in turn can lead to insecurity, of an adorable child with a disability touches the emo- depression, anxiety, or other types of psychopathology, tional hearts of the viewers by eliciting feelings of thus affecting disabled individuals into adulthood. The pity and guilt, which in turn stimulate individuals to portrayals can affect children directly, by being poster donate money to help these “helpless” individuals. children or seeing the portrayals, and indirectly, by Throughout the past century, the media have used interacting with members of society who have seen poster children to collect large sums of money. During these portrayals and adopted the perspective that dis- the nineteenth century, religion-based charities often ability is a defect. took on the responsibility for persons with disabilities. —Ingrid C. Hofmann The concept of the poster child was invented at the begin- ning of the twentieth century, when volunteer organi- See also Easter Seals; Telethon. zations were developed that depended on donations. In 1919, Edgar “Daddy” Allen, a businessman from Ohio, Further Readings founded the Society for Crippled Children, today’s Roberts, D. F., U. G. Foehr, V. J. Rideout, and M. Brodie. 1999. Easter Seals, and during the 1920s, Franklin D. Roosevelt Kids & Media in the New Millennium. Menlo Park, CA: inspired the March of Dimes. Today, when 99 percent Kaiser Family Foundation. of families own televisions, telethons have become a popular method for reaching large numbers of poten- ᨘ POSTTRAUMATIC tial donors. The telethons portray the struggles of STRESS DISORDER persons with disabilities, most of them cute disabled children, and their families (e.g., Jerry Lewis’s Muscular A person’s life can be interrupted by sudden, Dystrophy telethon on Labor Day). unexpected, and uncontrollable events involving Although these organizations are set up to help death, injury, inflicted pain, or threat to self-integrity. persons with disabilities, an increasing number of Such events are very distressing. With time and disabled individuals, including former poster children, appropriate support from others, distress and sorrow criticize them. Common criticisms include the follow- subside in most survivors, leaving scars but no open ing: these organizations have developed into million/ wounds. Some, however, do not recover and develop billion-dollar enterprises, which have lost sight of prolonged and disabling mental conditions. Post- their original goals; the organizations exploit poster traumatic stress disorder (PTSD) is the prototype of children; primarily nondisabled individuals run the prolonged psychological disturbance that follows a organizations; and disabled people are not consulted stressful event. Poverty——1281

Known since ancient time and masterfully described the disorder. PTSD symptoms can be alleviated by following World War I, PTSD was formally delineated pharmacological agents from the family of selective in a classification of mental disorder in 1980 (Diagnos- serotonin receptor inhibitors (SSRIs) and by psycho- tic and Statistical Manual of Mental Disorders, third logical treatment (such as cognitive or cognitive- edition [DSM-III]). The definition was further refined behavioral therapy). in the fourth edition of the Diagnostic and Statistical Some writers have challenged the validity of this Manual of Mental Disorders (DSM-IV). Some PTSD syndrome, arguing that PTSD is an artifact that reflects symptoms are directly related to the triggering event. skewed social perception of normalcy and pathology. These include reliving the traumatic experience Clinicians are well aware of the suffering of PTSD through distressing and intrusive flashbacks, night- patients and, while admitting that the definition of PTSD mares, heightened sensitivity to reminders of the event, might be imperfect, use this diagnosis and the related and fearful avoidance of places, situations, or mental research findings in the best interest of their patients. representations of the traumatic event. Other PTSD —Arieh Y. Shalev symptoms resemble depression and anxiety: loss of interest in previously pleasurable activities, restriction See also Mental Illness; Psychiatric Disorders; Stress. of one’s emotional life, irritation, trouble falling or staying asleep, jumpiness, and constant vigilance. Further Readings For PTSD patients, therefore, the traumatic event is Diagnostic and ever present and extremely demanding. A war veteran American Psychiatric Association. 1980. Statistical Manual of Mental Disorders, 3d ed. Washington, with PTSD may feel that the war “never ends.” Combat DC: American Psychiatric Association. scenes may continue to intrude into his or her con- ———. 1994. Diagnostic and Statistical Manual of Mental sciousness, and he or she might experience an over- Disorders, 4th ed. Washington, DC: American Psychiatric powering need to remain vigilant and defensive (e.g., Association. scan building roofs for potential snipers). Survivors of Brewin, C. R. 2003. Posttraumatic Stress Disorder: Malady or Myth? terrorist attacks will, similarly, feel that another attack New Haven, CT: Yale University Press. Pitman, R. K. and A. Y. Shalev. 2000. “Orr SP Post-Traumatic is imminent and behave accordingly. Rape survivors Stress Disorder, Emotion, Conditioning and Memory.” with PTSD might find it difficult to freely engage in Pp. 1133–1148 in The Cognitive Neurosciences, 2d ed., sexual activity—even with known and beloved part- edited by M. S. Gazzaniga. Cambridge: MIT Press. ners. As in other anxiety disorders, PTSD patients are well aware of the irrational nature of their fears but are Websites trapped and overpowered by them. National Center for PTSD, www.ncptsd.org/ Because many PTSD symptoms evoke the traumatic event, a prevalent theory explains the disorder as an inappropriate acquisition of fear responses during the ᨘ POVERTY event. Specifically, it has been argued that those brain areas that mediate fear responses (such as the amyg- A family is considered poor when their monthly dala) come to control and dominate PTSD patients’ income is less than the income threshold set by the emotional and cognitive life. Brain-imaging research particular country’s census bureau. Poor families do has shown that trauma survivors with PTSD tend to not have adequate income to cover their basic needs, activate the brain’s alarm system whenever confronted including food and shelter. People living in poverty with novelty or challenge. are more likely to be unemployed, have limited edu- PTSD does not develop in every survivor. Inherited cation, and are more likely to lack health care. An vulnerability and lifetime exposure to trauma increase increasing number of people with disabilities, includ- the risk of developing PTSD. Adequate support and a ing children and adults, live in poverty. nurturing recovery environment in the aftermath of Poverty is both a cause and consequence of dis- traumatic events help protect survivors from developing ability. Several reports have found a strong correlation 1282———Poverty between disability and poverty and have described that increase the likelihood of experiencing poverty them as being cyclical in nature. First, living in for the individual and the immediate family. These poverty has implications for being at increased risk consequences include (a) the income lost due to for developing a disability. Pregnant women living in incapacity and discrimination; (b) the direct cost of poverty are less likely to receive prenatal care and are treatment, access, and accommodations; and (c) the at higher risk for having low-birthweight babies and indirect costs to family caretakers who are not neces- birth complications that place them and their offspring sarily directly affected by the disability. Caregivers at a higher risk for experiencing disabilities. Also, may have to quit their jobs or accept only part-time people living in poverty are more likely to have either jobs so that they can care for the family member with insufficient or unhealthy nutrition and live in condi- a disability. tions that put them at high risk for exposure to malnu- Women with disabilities in general are also more trition, hazardous working conditions, and unhygienic likely to live in poverty than men. Disabled women, living conditions, increasing their likelihood of devel- compared with men with disabilities, are likely to oping impairments. Second, having a disability can have fewer years of formal education, less likely to lead to poverty. It is estimated that people with have health care and to be employed, and, if disabilities are three times more likely to live in employed, likely to be earning less income. A similar poverty than the population as a whole. Individuals outlook has been reported for the elderly with disabil- with disabilities experience additional stressors and ities worldwide. It has been reported that the propor- expenses related to daily living. These include expen- tion of the elderly with disabilities living at or below sive assistive devices/adaptive equipment for increased the poverty line, with limited health care, limited functioning, home modifications expenses, health care income to meet their daily needs, and limited access attendant costs, special services (e.g., interpreters), to attendant care, transportation, and assistive devices, extra transportation expenses, and health care costs. is higher than younger adults with disabilities. Individuals with severe disabilities are more likely Adults are not the only ones affected by the rela- to experience difficulty seeking and maintaining tionship of poverty and disability. Children living in employment. They are more likely to receive welfare poverty are particularly at risk for having a disability. benefits and less likely to have health insurance. All For example, in 2003 in the United States, it was esti- of these difficulties, combined with the marginaliza- mated that about 28 percent of children with disabili- tion from community and social activities, increase ties were living in poor families compared with 16 the likelihood of leading a life of poverty. According percent of all children. Poverty affects a child’s devel- to the 2001 census data for the United States, only 48 opment and learning, and in turn, the presence or percent of citizens 25 to 64 years old with severe onset of a disability exacerbates poverty. Children disabilities have health insurance compared with 80 living in poverty have a higher incidence of malnour- percent of individuals with nonsevere disabilities and ishment and exposure to environmental toxins; fur- 82 percent of nondisabled Americans. thermore, poverty contributes to other factors such as In the United States, at least half of the adults with parental stress and reduced exposure to a healthy and disabilities who cannot work because of a chronic dis- safe learning environment. Children with disabilities ease or disability receive federal cash benefits under living in poverty are more likely to be neglected and Social Security Disability Insurance (SSDI) and malnourished and are more likely to die young than Social Security Insurance (SSI), and some may qual- nondisabled children. Antipoverty programs need to ify for Medicaid and Medicare. The paperwork and closely examine the needs of families with children bureaucracy involved in receiving this income are with disabilities who may experience emotional and complex. Even if an individual successfully obtains material hardships. these supplements, the small monthly income is often Researchers have also highlighted the relation- not sufficient to cover living expenses. In brief, having ship between race, poverty, and disability in the a disability has three different types of consequences United States. Minorities with disabilities (including Poverty———1283

Hispanics, African Americans, and Native Americans) Centre (CPRC) attempted to understand the relationship are more likely to live in poverty than nonminorities between poverty and disability and are sponsoring a with disabilities. Researchers have called this “triple multitude of efforts to address these issues. These jeopardy” or triple discrimination of race, poverty, and efforts have included economic development initiatives disability that increases social inequalities. Minorities to create new and safer jobs, campaigns to eradicate with disabilities are at a higher risk for being discrim- polio and other childhood diseases through appropriate inated against when looking for jobs compared to vaccinations, campaigns to prevent malnutrition in Caucasians with disabilities. They are likely to have small children, and educational campaigns about less formal education, to be less integrated into the appropriate handling of hazardous materials. fabric of society, and to be more often marginalized A worldwide effort is led by WHO to eradicate from societies’ social and economic life than are polio and other preventable childhood diseases Caucasians with disabilities. with vaccinations. Much of the WHO efforts are also It has been shown that, worldwide, people with concentrated in Asia and Africa. In addition, the disabilities are poorer as a group than the general Department for International Development is sponsor- population and that people living in poverty are more ing numerous programs through the United Nations likely than others to be disabled. Individuals living in in developing countries to improve sanitation and the developing countries in poor conditions are more water supply, as well as decrease exposure to environ- likely to experience poor nutrition, dangerous work mental hazards. More research needs to be done to environments, limited access to vaccination programs, address policy issues and examine the impact of cur- limited preventive health care and maternity care, poor rent international efforts. Research endeavors also hygiene and sanitation, war and conflict, and natural need to focus on practical strategies for reducing the disasters that can cause disability and impairment. poverty that people with disabilities face, instead of In communities around the world, people with dis- continuing to gather data to reaffirm the well-known abilities are among the poorest and most vulnerable of link between poverty and disability. It is important to all groups. Individuals with disabilities are often stig- increase the inclusion of people with disabilities in matized and abused and less likely to have social policy and social change efforts concerning poverty security and health care. Furthermore, the housing and and disability. Inclusive and participatory research is environmental conditions in which poor people live needed to empower people with disabilities during the and work make them and their children more vulner- process of gathering data and information, to assess able to mental and physical impairments. progress, and to challenge the exclusion and margin- According to the World Health Organization alization that help perpetuate the link between poverty (WHO), it is hard to obtain an accurate estimate of the and disability. number of people with disabilities in the world. —Yolanda Suarez-Balcazar and Disability rates may vary by the type of country, type Sharibeth Cooper of disability, and age group. Nevertheless, the percent- age of disabled persons ranges from 0.2 to 20.9 percent See also Education; Political Economy; Poor Laws (United of the population in a given country. It is estimated Kingdom); Race and Ethnicity. that more than 500 million individuals in the world have a disability, and about 80 percent of these indi- Further Readings viduals live in developing countries. The fact that Batavia, Andrew I. and Richard L. Beaulaurier. 2001. “The developing countries have such a high number of Financial Vulnerability of People with Disabilities: Assessing people with disabilities is due, in part, to the large Poverty Risks.” Journal of Sociology and Social Welfare number of people who live in poverty. Many interna- 28(1): 139–162. Block, Pamela, Fabricio E. Balcazar, and Christopher B. Keys. tional efforts are under way to address poverty and 2001. “From Pathology to Power: Rethinking Race, Poverty, disability. For instance, the Action on Disability and and Disability.” Journal of Disability Policy Studies 12(1): Development (ADD) and the Chronic Poverty Research 18–27. 1284———Prematurity

Brantlinger, Ellen. 2001. “Poverty, Class, and Disability: A they have not been associated with a parallel decrease Historical, Social, and Political Perspective.” Focus on in the rates of subsequent neurosensory sequelae, Exceptional Children 33(7): 1–19. which include cerebral palsy, mental retardation, Elwan, Ann. 1999. “Poverty and Disability: A Survey of the Literature.” Social Protection Paper Series 9932, Human blindness, and deafness. The rates of cerebral palsy < Development Network, The World Bank, Washington, DC for infants 1500 g birthweight are between 13 and (http://www.worldbank.org/sp). 90 per 1,000 live births, which is nearly 40 times Fuijira, Glenn T., Kiyoshi Yamaki, and Susan Czechowicz. 1998. higher than the rate of 2 per 1,000 in the general pop- “Disability among Ethnic and Racial Minorities in the United ulation. The rates of blindness for infants < 1000 g are States: A Summary of Economic Status and Family between 2 and 8 percent. The current estimate is that Structure.” Journal of Disability Policy Studies 9(2): 111–130. 1 in 2 extremely low birthweight (ELBW, < 26–28 Moore, Karen and Rebeca Yeo. n.d. “Poverty and Disability: weeks GA) survivors will have a neurodevelopmental Breaking the Vicious Cycle through Inclusion.” Id21, disability; the most immature infants often have Insights: Communicating Development Research. Retrieved multiple disabilities. October 30, 2003 (www.id21.org/insights/insights46/ At mid-childhood, additional problems such as insights-iss46-art06.html). behavioral difficulties, inattention, and learning Park, Jiyeon, Ann P. Turnbull, and Rutherford H. Turnbull. 2002. “Impacts of Poverty on Quality of Life in Families of disabilities may emerge. Children who were ELBW Children with Disabilities.” Council for Exceptional have mean IQ and achievement scores that are 9 to 13 Children 68:151–170. points below the normative mean. Nearly half of the Smart, Julie and David W. Smart. 1997. “The Racial/Ethnic ELBW cohorts require special educational assistance Demography of Disability.” Journal of Rehabilitation 4:9–15. and/or repeat a grade. These difficulties have been shown to persist to mid-to-late adolescence. Even children who are normal neurologically and have ᨘ PREMATURITY intellectual scores within the average range do not perform as well as their term birthweight peers. Thus, Prematurity, as defined by the World Health Organi- there is an economic burden for remedial assistance zation, includes infants born at < 37 weeks gestational over and above that for term infants. However, by self- age (GA). The prematurity rate varies between 5 and report, adolescents born with ELBW placed a high 7 percent in Europe and Canada, whereas in the valuation on their health-related quality of life, despite United States, it is 8 to 10 percent in white and 16 to recognition of their disabilities. 18 percent in African American women. Despite In terms of general health, the high prevalence of improvements in obstetric care, the prematurity rate recurrent illness and hospitalization in early childhood has not declined in the past 40 years. Prematurity appears to decline as the children born prematurely remains the leading cause of mortality and morbidity grow older. However, although there is some catch-up worldwide and accounts for between 60 and 80 per- growth, overall, ELBW survivors have lower growth cent of deaths among infants without lethal congenital attainment at adolescence and early adulthood. Distur- malformations. bances in growth in the intrauterine and postnatal Survival of preterm infants is directly related to the period may have long-term implications in terms of degree of immaturity and birthweight. Although only metabolic derangements, hypertension, and cardio- about 1.5 percent of all infants are of very low birth- vascular disease in adulthood. weight (VLBW, < 1500 g), this group accounts for a dis- It is important to emphasize that the morbidities proportionately high mortality and morbidity. Neonatal described are more prevalent in the least mature infants. survival improves dramatically with increasing GA; By and large, infants weighing >1500 g at birth or born currently, the survival is more than 50 percent at 25 above 32 weeks gestation do substantially better but weeks and more than 90 percent at 28 or 29 weeks GA. may still have minor disabilities. Thus, prematurity is Although recent advances in the care of infants a major public health problem. The high disability rates have resulted in a significant improvement in survival, are often compounded by psychosocial disadvantage. Prenatal Testing———1285

To date, medical efforts to prevent premature birth have genetic diagnoses with which to assess risk of disabil- been largely unsuccessful. ity in their fetus or yet to be conceived fetus. Individual parents generally seek to optimize the chances of a —Saroj Saigal “normal” (i.e., nondisabled) child. As access to prena- See also Prenatal Testing. tal information concerning fetal anatomic and genetic characteristics has increased, the gap between accu- Further Readings rately predicting fetal anatomy or genetic mutations Criteria for Determining Disability in Infants and Children: and predicting childhood disability has widened. This Low Birth Weight. 2002. Evidence Report/Technology widening gap leaves parents to define the limits of hope Assessment No. 70 (Prepared by Tufts New England Medical for their offspring individually, based on heterogeneous Center Evidence-Based Practice Center under Contract information and experiences. In many industrialized No.290–97–0019; AHRQ Publication No.03-E010). countries, socioeconomically advantaged parents act on Rockville, MD: Agency for Healthcare Research and Quality. these risk assessments in decisions to terminate preg- Hack, Maureen and Avroy A. Fanaroff. 2000. “Outcomes of nancies. Some parents who have a specific disability Children of Extremely Low Birthweight and Gestational Age and are faced with a relatively certain fetal diagnosis of in the 1990’s.” Seminars in Neonatology 5:89–106. the same disability (e.g., achondroplasia) will opt to Lorenz, John M., Diane E. Wooliever, James R. Jetton, and continue the pregnancy based on their own life experi- Nigel Paneth.1998. “A Quantitative Review of Mortality ences. Alternatively, parents faced with a similarly cer- and Developmental Disability in Extremely Premature Newborns.” Archives of Pediatric and Adolescent Medicine tain but life-limiting disability (e.g., Tay-Sachs disease) 152:425–435. may opt for pregnancy termination. Saigal, Saroj. 2000. “Follow-Up of Very Low Birthweight Babies The major diagnostic categories in prenatal test- to Adolescence.” Seminars in Neonatology 5:107–118. ing associated with a significant risk of disability are Saigal, S., D. Feeny, P. Rosenbaum, W. Furlong, E. Burrows, and genetic, anatomic, infectious, and environmental. B. Stoskopf. 1996. “Self-Perceived Health Status and Health- Genetic diagnoses include cytogenetic abnormalities Related Quality of Life of Extremely Low-Birth-Weight Infants at Adolescence.” Journal of the American Medical (too many, too few, or malformed fetal chromosomes, Association 276:453–459. e.g., Down syndrome) and inherited genetic diseases Wood, Nicholas S., Neil Marlow, Kate Costeloe, Alan T. Gibson, (e.g., cystic fibrosis). Diagnosis of either category of and Andrew R. Wilkinson, for the EPICure Study Group. genetic disease requires access to fetal cells or DNA 2000. “Neurologic and Developmental Disability after through amniocentesis, cordocentesis, chorionic vil- New England Journal of Medicine Extremely Preterm Birth.” lus sampling, or embryo biopsy. Anatomic diagnoses 343:378–384. are established by antenatal ultrasound and include Websites major birth defects (e.g., congenital heart disease or spina bifida) and prematurity. These diagnoses can Premature Baby—Premature Child, www.prematurity.org also lead to the prediction of childhood disability (e.g., cerebral palsy in premature infants). Fetal infec- tions (e.g., rubella or German measles) can be diag- ᨘ PRENATAL TESTING nosed using either maternal or fetal blood samples or amniotic fluid and can lead to the prediction of signif- Disability plays a major role in prenatal testing. This icant pediatric disability. Finally, fetal exposure to entry focuses on the principal diagnostic categories that specific teratogens through maternal or paternal envi- contribute to risk of disability in prenatal testing and the ronmental exposure discovered through a careful major technologies that are used to assess prenatal and medical history can increase the risk of childhood dis- preconceptual risk of disability; full discussion of ability (e.g., fetal alcohol syndrome or birth defects the social contributors to prenatal testing is beyond due to paternal exposure to organic solvents). Each this brief essay. Prospective parents seek prenatal or of these categories includes many conditions with preconceptual testing to determine specific anatomic or widely varying outcomes in disability. This biologic 1286———Prenatal Testing heterogeneity in outcome can complicate parental lead to death within hours to days after birth. However, understanding of disability risk. some of these children survive for years. Parents faced The two most frequently used diagnostic methods with a fetal diagnosis of trisomy 18 may choose to ter- for prenatal testing are antenatal ultrasound and minate or carry the pregnancy depending on their per- amniocentesis. After ultrasound technology was ceptions of the disability these children develop. These developed during World War II to detect German sub- techniques also provide access to fetal DNA that can be marines, early ultrasonographers in the United States used for molecular diagnosis of specific gene defects. began to visualize the fetus in “black and white When unambiguous evidence is available correlating a pictures of things that looked like the clouds seen in specific gene mutation with disability, parents use this hurricane reports,” according to Lewis H. Nelson, information to make decisions about the management president of the American Institute of Ultrasound of the pregnancy and the child. However, the ability Medicine. With rapid advancements in technology, to predict disability based exclusively on genetic accurate anatomic evaluation of individual organs information is limited due to the biologically complex (e.g., hearts or spinal cords) in fetuses as early as 8 interactions among gene mutations, environmental weeks gestation has become commonplace. However, conditions, and genetic backgrounds (e.g., different eth- antenatal ultrasound has significant false-positive and nicities). For example, in Tay-Sachs disease, the neuro- false-negative rates. In addition, the anatomy of a developmental progression of the disease is invariable fetus may not predict the disability of a child. For and life limiting. In cystic fibrosis, while the diagnosis example, with enlarged chambers in the fetal brain is equally precise, the disability outcome may be quite midway through a pregnancy (hydrocephalus), the variable, with many affected individuals surviving and likelihood of adverse neurodevelopmental outcome being productive well beyond age 30. (e.g., seizures, inability to read or talk, blindness, Preconceptual testing for predicting risk of dis- or deafness) is significantly increased. But some ability in future children has also become increas- children with this finding are “normal,” and the ultra- ingly commonplace. Using careful review of family sound test cannot distinguish those who will have histories of both parents and DNA testing for many from those who will not have disabilities. different gene mutations, preconceptual testing Amniocentesis, or the removal of a sample of attempts to reduce the risk of conceiving children who amniotic fluid from the womb, was first developed in will be born with disability or become disabled. For 1950 by a Uruguayan obstetrician to measure pressure example, if there is a strong family history of spina changes in the womb during labor. This procedure bifida or anencephaly, folic acid is recommended for transformed obstetrics from an exclusively maternal prospective mothers prior to conception and for the discipline to a medical specialty that included prenatal first three months of the pregnancy. Epidemiologic testing for fetal chromosomal composition around studies have shown that this inexpensive nutritional 16 weeks gestation. Recent advancements now permit supplement can reduce the risk of spina bifida and fetal chromosomal evaluation at less than 8 weeks anencephaly by 75 percent. A more difficult problem gestation (by chorionic villus sampling) or prior to with newer DNA technologies is the ability to predict implantation in the womb of an embryo (by embryo the risk of disabling adult diseases (e.g., Alzheimer’s biopsy). Diagnosis of disabling chromosomal and disease, Parkinson’s disease, or breast cancer) prior genetic conditions in the embryo or fetus prior to the to conception. Available genetic testing technologies legal definition of viability is feasible (24 completed permit the identification of genetic predisposition, and weeks of gestation in the United States). However, like risk can be reduced with strategies such as the selec- antenatal ultrasound, the biologic continuum of many tion of a genetically determined low-risk sperm or genetic diagnoses plus the socioeconomic status of egg donor. In some conditions, pharmacologic, behav- different families may lead to different degrees of ioral, or monitoring strategies can also be used to disability in children with similar fetal genetic diag- reduce the risk of disability. noses. For example, children with trisomy 18 are Prenatal and preconceptual testing leaves parents frequently born with life-limiting birth defects that with a conundrum that they must resolve based not only Pressure Ulcer/Sore———1287 on test results but also on personal values, prior experi- Further Readings ences, and, ultimately, hope. Parents use the input of Getz, L. and A. L. Kirkengen. 2003. “Ultrasound Screening in medical providers, religious advisers, family members, Pregnancy: Advancing Technology, Soft Markers for Fetal financial consultants, the media, the Internet, and Chromosomal Aberrations, and Unacknowledged Ethical cultural expectations differently and selectively. Dilemmas.” Social Science & Medicine 56:2045–2057. Frequently, mothers and fathers differ in their percep- Parens, E. and A. Asch. 2003. “Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations.” tion of disability based on prenatal testing, and this dif- Mental Retardation and Developmental Disabilities ference will lead to conflict concerning consideration Research Reviews 9:40–47. of pregnancy termination. Some parents will choose to Polifka, J. E. and J. M. Friedman. 2002. “Medical Genetics: 1. rely on hope that their child will be less disabled than Clinical Teratology in the Age of Genomics.” Canadian predicted, on hope that technology advancement will Medical Association Journal 167:265–273. offer their child new strategies to reduce the impact of Silva, F. G. 2002. “Ethics of the New Biology and Genetic Medicine (Molecular Ethics): Brief (Re)view from the disability, or on faith that their child’s disability will USA.” Pathology International 52:555–562. be a leavening factor in their lives. Other parents will Sinclair, A. 2002. “Genetics 101: Detecting Mutations in Human choose to terminate a pregnancy rather than subject Genes.” Canadian Medical Association Journal 167:275–279. a child to multiple painful medical interventions with- out reasonable hope of the ability to overcome disabil- ity. While technology offers impressive anatomic and ᨘ PRESSURE ULCER/SORE genetic precision for fetal evaluation, the biologic con- tinuum of disability outcome associated with specific Pressure ulcer/sore (PU) is a severe soft tissue fetal anatomic and genetic findings, parental percep- breakdown most commonly reported in individuals tions of disability risk, and the timing during preg- confined to an unaltered body posture such as sitting nancy of the diagnosis all contribute to decisions that in a wheelchair due to mobility impairment or staying may alter significantly the population-based frequency in bed due to illness. Unrelieved pressure squeezes of specific disabling conditions. tiny blood vessels, which supply the skin with nutri- Prenatal and preconceptual testing provides a ents and oxygen. When skin is starved for too long, battery of powerful medical tools to predict risk of the tissue dies and a PU forms. The most frequently disability. Prenatal testing also provides an area for affected body locations are where soft tissue is over- disability research to improve the capability of pre- lying a bony prominence and where body weight is natal testing to predict disability, to identify strate- supported, such as the ischia and tailbone for sitting gies to understand mechanisms of disability, and to posture and the hip bone, back of the head, shoulder improve outcomes of specific disabilities. Such blades, spine, ankles, and heels for supine posture. research is critical to ensure that parents optimize Persons with impaired nervous systems are not able their children’s futures rather than choose their future to sense the need to change posture for pressure relief. children. Prenatal testing must be viewed as informa- Those in bed may get PU after as little as one to two tion for parents that will help them decide wisely hours, while those who sit in wheelchairs can get about their pregnancies, not simply make wise deci- PU in even less time because the force on the skin is sions prompted by medical providers. Given the greater. significant contributions of genetic, environmental, A number of factors predispose an individual to a anatomic, and infectious causes to risk and severity high risk of PU. External factors include interface of disability and the substantial amount of prenatal pressure, shear and friction, time remaining in a fixed testing provided to parents, the opportunity for posture, temperature, and humidity. Internal factors improved understanding of disability has never been (i.e., sensory impairment, vascular disease, previous greater. history of pressure damage, malnutrition, and dehy- dration) determine the level of loading tolerated by —F. Sessions Cole the tissue before damage occurs. In practical situa- See also Cystic Fibrosis; Down Syndrome; Prematurity. tions, these factors interact with each other, making an 1288———Prevention individual more vulnerable to PU formation. Increasing Symposium on Advances in Skin & Wound Care 2003: the time that pressure is applied without relief and the 413–414. loss of muscle bulk and tone all make the tissues more Nola, G. T. and L. M. Vistnes. 1980. “Differential Response of Skin and Muscle in the Experimental Production of Pressure liable to be damaged by a given level of pressure. Sores.” Plastic Reconstructive Surgery 66:728–733. Among the above-mentioned factors, pressure, “Pressure Ulcers in Adults: Prediction and Prevention.” 1992. which is more concentrated over bony prominences, Clinical Practice Guideline Number 3. AHCPR Pub. has been considered the single most important No. 92–0047. Retrieved May 6, 2005 (http://www.wound etiologic factor in PU formation. High pressure leads support.com/AHCPR/Overview.html). to impaired lymphatic circulation and hypoperfusion Swain, I. D. and D. L. Bader. 2002. “The Measurement of Interface Pressure and Its Role in Soft Tissue Breakdown.” in the compressed tissue, resulting in an accumulation Journal of Tissue Viability 12:132–134. of toxic intracellular materials and a compromised blood flow, which further lead to tissue hypoxia, aci- dosis, interstitial hemorrhage, and cellular death. Both ᨘ duration and intensity of pressure affect the amount PREVENTION of damage. Reestablished tissue perfusion after a long period of high loading will result in ischemic/reperfusion Prevention: (noun) 1. action that stops something injury, which has been implicated in tissue damage. from happening; e.g., prevention of crime. 2. some- Studies have shown that muscle is highly susceptible thing that acts to prevent something: an action or mea- to localized compression, eventually leading to tissue sure that makes it impossible or very difficult for degeneration in the form of a deep PU that progresses somebody to do a certain thing, or for something to toward the skin surface. happen. If pressure is relieved periodically, higher pressures In everyday language, the word prevention refers to can be tolerated for longer periods. This forms the stopping something bad or unhealthy from happening. basis of pressure relief regimens used in clinical prac- Promoting or encouraging are the antonyms—actions tice, which involve regular turning, pushing up from that facilitate or help something to happen. The two the support surface, and the use of alternating pressure ends of the spectrum are generally associated with neg- support systems. Short-term loading generally pro- ative outcomes, on one hand (prevention), and positive duces elastic deformation and rapid elastic recovery, outcomes, on the other (promotion). whereas long-term loading results in marked creep and requires significant time for complete tissue recovery. PUBLIC HEALTH PREVENTION It is suggested that skin inspection be performed regularly and the frequency determined in response to The traditional public health meaning of prevention changes in the individual’s condition. Patients who refers to efforts to eliminate a negative health condi- are able and willing should be informed and educated tion. For example, infants are immunized early in life about PU risk and prevention strategies. to prevent certain childhood diseases. An overwhelm- ing percentage of infants in the United States are —Mohsen Makhsous now immunized, and this is clearly a public health See also Spinal Cord Injury. triumph—one that few would question. Traumatic injuries, another example, are associated with several Further Readings negative health outcomes, ranging from long-term Bogie, K. M., I. Nuseibeh, and D. L. Bader. 1992. limitations in activities to death. Public health inter- “Transcutaneous Gas Tensions in the Sacrum during the ventions to prevent injuries include seat belt protec- Acute Phase of Spinal Cord Injury.” Engineering in Medicine tion, swimming and diving safety, and bicycle helmet 206:1–6. Makhsous, M., F. Lin, M. Zeigler, D. Hartwig, S. Taylor, and programs. Research has shown that a large percentage J. Pedersen. 2003. “Alternating Ischial Supports as a Method of neural tube defects could be prevented if women of of Preventing the Incidence of Pressure Ulcers.”18th Clinical childbearing age take 400 micrograms of folic acid Prevention———1289 each day by a combination of nutrition, food fortifica- are focused on trying to keep them from existing. Past tion, or vitamin supplementation. Obesity is another experience is not balanced with current reality—the significant problem in the U.S. population, resulting reality that public health emphasis on improving the most often from a combination of poor diet and lack health of people with disabilities is growing. There is of physical activity. Major public health programs no inherent conflict between primary prevention inter- have been implemented to prevent each of these— ventions that try to reduce disabling conditions and childhood illness, traumatic injuries, birth defects, and maintaining and improving the health of individuals obesity through population-based programs—through who experience disabilities. Those who experience immunizations, automobile safety, folic acid consump- disabling conditions often have fallen through the tion, and appropriate diet and exercise. primary prevention net—that is, all the public health “Prevention,” as it pertains to disability, is a more activities did not prevent them from experiencing the complicated topic. Disability, by public health defini- disabling condition. They live with disabilities related tion, is a negative health outcome to be prevented. to birth defects, developmental disabilities, injuries, Disability prevention is perceived by many in the chronic illness, or aging. disability community, therefore, as an attempt to pre- Primary prevention messages are equally important vent the person with a disability from existing. This for people with and without disabling conditions. This interpretation can create an adversarial relationship is a crucial perspective for public health professionals, between public health and the disability community— as well as individuals with disabilities and their one that need not be present. families. Individuals with disabling conditions are Public health does not inherently disrespect the just as vulnerable to cancer or heart problems, for experience of disability. In the pursuit to improve the example, as the rest of the population. Screening for health of the public, in the context of the history of breast or prostate cancer or cardiovascular problems public health, it is easy for public health professionals should be a part of clinical preventive services for all to forget that no accumulation of public health activi- of the population. Cancer research comparing women ties will eliminate all conditions that limit people’s with and without disabilities show that women with activities. Public health can, therefore, inadvertently disabilities are diagnosed later and treated less inten- frame messages designed to help prevent behaviors sively than the general population. Even though they associated with disabling conditions so that they dis- might see medical professionals more often, people respect the human experience of disability—and those with disabilities often do not receive these preventive living with a disabling condition. Those messages, services as routinely as the general population. for example, proclaim the need for safe driving while Part of the problem might be that clinical preventive showing someone in a wheelchair. The explicit con- services (e.g., shots, prostate or breast cancer screen- nection disrespects the experience of disability and ings) are usually completed in the offices of family draws an inappropriate connection. Disability, then, is physicians or internists. Many individuals with disabil- presented as equated with illness. To the extent that ities use specialists as their primary care physicians. public health messages, in an effort to prevent the con- The specialists may be less aware of, familiar with, and ditions associated with disability, equate illness with sensitive to the need for clinical preventive services. disability, they unwittingly demean people living with In addition, there are times when public health a disability. messages should be tailored specifically to reach People with disabilities can also contribute to an people with disabilities. This is particularly important adversarial perspective. In their pursuit for inclusion, when people with disabilities could be at particular people with disabilities may believe that public health risk. For example, people with mobility limitations prevention activities are implicitly (or explicitly) try- are at greater risk for weight gain than the general ing to prevent them from being. Seeing the emphasis population due to their often reduced physical activity placed on primary prevention often leads those with and poor nutrition. In fact, national data suggest disabilities to conclude that all public health activities that people with disabilities report significantly more 1290———Prevention obesity and less physical activity than the population part of public health’s responsibility related to disability. without disabilities. Few public health messages, how- Many conditions are not prevented from occurring ever, focus on this at-risk group. despite the best public health effort. Children are born with sensory, physical, and cognitive prob- Prevention and the Environment lems. Throughout our lives, we may experience traumatic injuries anytime, and chronic illnesses There is another kind of public health primary develop for many individuals as they age. Vernon prevention activity relevant to people with disability— Houk, a public health physician and CDC leader, environmental factors. Dramatic improvements in the speaking to one of the early disability prevention health of the public have come about as a result of meetings, suggested that “people with disabilities environmental changes. It is clear, for example, that form the only minority group to which anyone may more improvement in the health of a population occurs join at any time with no intention to do so.” Preven- because of clean water and hygienic waste removal tion of conditions associated with disability is one, than because of any other contributors. Improvement albeit important, set of public health activities. of the health of the public has often been intimately Public health also has responsibility to people who tied to such environmental improvements. Changes in live with disabilities. environmental conditions have been estimated to account for an overwhelming percentage of decreased mortality during the first half of the twentieth century. SECONDARY CONDITIONS That is, environmental improvements have been pri- The term secondary conditions is relatively new to the marily responsible for the increase in lifespan from lexicon of public health and disability studies. While 45 years in 1900 to 72 years in the year 2000. Toxic the term has created some confusion—in part because air, water, or food can decrease quality and quantity it is new and in part because the definition continues to of life for the population, including those with be refined—the distinctions it creates are essential to disabilities. In addition, however, environmental the lives of people with disabilities. “A secondary con- factors such as a lack of curb cuts, negative attitudes dition is any condition to which a person is more sus- of society, and government policies can dramati- ceptible by virtue of having a primary condition” cally affect the health and well-being of people with (Lollar 1999). The concept of secondary condition disabilities. does not reflect its importance but rather its temporal quality—that is, a secondary condition occurs after a PUBLIC HEALTH primary condition. PREVENTION PROGRAMS There are fundamental distinctions between comorbid conditions and secondary conditions. Often, Programs to implement primary prevention activities the science of public health addresses individual con- associated with disability were officially begun at ditions in terms of risk, prevention, and intervention, the U.S. Center for Disease Control and Prevention as if those experiences occurred in isolation. That is (CDC) in 1988. The program focused on disability seldom the case, of course. In some situations, condi- prevention using the traditional public health model— tions occur as comorbid health conditions—that is, identify the condition, generate interventions to con- they are unrelated; there is no association. An older trol or prevent the conditions, identify those at risk for person with macular degeneration (an eye disease) the condition, and intervene. This approach has been might also have arthritis. There is essentially no rela- used universally by public health agencies to protect tionship between these two conditions, although the the health of the world. Unfortunately, emphasis on combined effect may be significant in terms of mobil- primary prevention of conditions associated with dis- ity and quality of life. In other cases, one condition ability has been the major focus but is only a small creates risk for another. A person with paralysis, for Prevention———1291 example, may be at risk for pressure sores. One follows ICF: Interaction of Concepts 2001 the other. An important char- Health Condition acteristic of a secondary con- (disorder/disease) dition is that it can be prevented. Prevention strategies to avoid pressure sores would include Body Structures & Activities Participation shifting weight, repositioning, Functions (activity limitation) (participation restriction) or having a good seating sys- tem. Some secondary condi- tions are unique to people with disabilities, while some are Environmental Personal not. For example, because of a Factors Factors disability and its consequent isolation, a person might become depressed. An indi- Figure 1 ICF: Interaction of Concepts 2001 vidual without disabilities may be depressed as well, though the underlying causes the kinds of activities one performs, and the support- may differ. Common secondary conditions include ive nature of the environment, as well as one’s own depression, chronic pain, joint and muscle pain, sleep resilience, may have more to do with quality of life disturbance, obesity, fatigue, contractures, and lack of and social participation than restoration of function. conditioning. Thus, in recent years, scholars and advocates in The concept of secondary conditions, however, is disability have attempted to portray the multidimen- now regarded as broader than associated impairments sional characteristics of disability as a way to under- to include activity limitations and participation stand how people carry out their lives or how they restrictions. Recently, the concept of secondary condi- might be more successful in pursuing meaningful tions has expanded: “Secondary conditions can create activities. This effort is described as a social model of significant impediments to an individual at the level of disability. body system dysfunction, activity limitations or par- This more dimensional portrayal of disability ticipation restrictions” (Lollar 1999). This expanded embraces the complex relationships of human experi- notion of secondary conditions emerges from efforts ence and illustrates the potential impact of secondary over the past 25 years to reconceptualize the lived conditions. The World Health Organization developed experience of disability. Until recently, the so-called the International Classification of Functioning, medical model dominated how disability was Disability, and Health (ICF) as a companion to the described. The essential notion was that a problem at International Classification of Diseases (ICD). The the body system level created inherent limitations in ICF creates a framework to “map” human experience. function—for example, the ability to pronate or It is not designed to be used exclusively to model supinate the hand. The medical model relies on an disability. The ICF creates a taxonomy to portray accurate diagnosis that allows problems to be “fixed.” the relationship of human experience in related However, in disability, people’s lives go on—“fixed” domains—body, person, and society. Health condi- or not—and individuals generally demonstrate remark- tion describes disease, injury, or disorder at the at the able capacities to make do with what they have. The person level. Health conditions may result in changes ability of individuals to deal with adverse circum- of body structure and function. These can be described stances and go on is mediated by many factors in addi- and measured; for example, macular degeneration tion to restoring function. One’s financial resources, occurs at the cellular structure of the macula, and its 1292———Prevention effect can be measured in altered acuity and central not so much with the built characteristics of the envi- loss of visual field. Activities describe the things people ronment as with the environment as it is defined by do: walking, lifting, reading, driving, and preparing social attitudes and public policy. meals. And participation deals with the social roles While the ICF allows us to map the course and that people carry out—going to school, working, vot- dimensions of disability, the conceptual framework also ing, and having friends and relationships. The multi- helps to understand the role of secondary conditions in ple arrows of Figure 1 illustrate the multidimensional a complex system defined by our lives. The definition characteristics of the concepts of the ICF. of a secondary condition emphasizes any condition that For example, a disease or injury may create creates significant impediments to individuals at the changes in body function and structure that, in turn, level of body system dysfunction, activity limitations, may or may not affect the performance of activities, or participation restrictions. Therefore, if we map which, in turn, may or may not affect social roles. potential secondary conditions against the ICF model, In this model, the environment plays an important we can see that there may be secondary conditions at mediating role insofar as the environment can serve as the body structure or function level (say, pressure sores either a barrier or a facilitator. An example helps to or contractures), a secondary condition may occur at make these relationships substantially clearer. A the activity level (e.g., personal care might be limited person with macular degeneration (an eye disease) due to a fall), or secondary conditions can occur at the experiences changes in the structure of the macula. participation level if one is socially isolated or cannot These changes can be measured in terms of visual get a job. acuity, that is, function. As a result of macular degen- Consequently, the prevention of secondary condi- eration, then, a person may have difficulty reading tions is embedded in more responsive clinical care. print, driving a car, getting around in dimly lit envi- For example, physicians should routinely ask about ronments, or recognizing faces at a distance. These weight, exercise, and pain among patients with dis- are all activities. As a consequence of these activity abilities, and broad health promotion activities should limitations, a person with macular degeneration may include or target people with disabilities in health be less inclined or less able to go out to dinner with messages. The prevention of secondary conditions friends. The print on the menu might be too small to may evolve from improved technology, for example, read, steps could create hazards for falls, and an indi- as wheelchair design and improved seating systems vidual may not be able to get to the restaurant unless reduce contractures, pain, and skin abrasions. And someone picks her or him up. These relationships are secondary conditions related to social isolation and not inevitable or predictable. This model suggests social roles (e.g., work) can be mediated by changes multiple places where interventions may reside. For in the environment, as the built environment becomes example, medical treatment may mitigate the effects more accessible, transportation systems more robust, of macular degeneration, low-vision services (technol- and employers more welcoming. ogy) may improve function, and rehabilitation services —Donald J. Lollar and John Crews might improve the performance of various activities (say, using a cane to detect steps). Moreover, the envi- See also International Classification of Functioning, Disability, ronment can have a major influence in reducing the and Health (ICF/ICIDH); World Health Organization. negative outcomes of macular degeneration for the Further Readings individual. For example, a robust transportation system would likely solve the problem of getting to the restau- Fougeyrollas, P., R. Cloutier, H. Bergeron, J. Cole, M. Cote, and rant. Better light at the steps might improve safety and G. S. Michel. 1997. Revision of the Quebec Classification: Handicap Creation Process. mobility, and a large-print menu might ease the diffi- Lac St. Charles, Quebec: Canadian Society for the ICIDH. culty and anxiety of ordering. Also, helpful and patient Lollar, D. 1999. “Clinical Dimensions of Secondary Condition.” restaurant staff could make the entire outing more In Issues in Disability & Health: The Roles of Secondary pleasant. In the ICF, the concept of environment has to do Conditions & Quality of Life, edited by R. J. Simeonsson & Privatization———1293

L. N. McDivitt. Chapel Hill: University of North Carolina, Kingdom and the United States (under President FPG Child Development Center. Ronald Reagan); labor governments in Scandinavia, Lollar, D. J. and J. C. Crews. 2003. “Redefining the Role of Public New Zealand, and Australia; socialist governments Health in Disability.” Annual Review of Public Health 24:195–208. in Spain and Mexico; and the governments in the Marge, M. 1999. “Defining a Prevention Agenda for Secondary countries of the former Soviet bloc have all imple- Conditions.” Pp. 15–29 in Issues in Disability & Health: The mented privatization programs. This unprecedented Roles of Secondary Conditions & Quality of Life, edited by growth in privatization will likely have profound R. J. Simeonsson & L. N. McDivitt. Chapel Hill: University and long-term impacts on the type, cost, and quality of North Carolina, FPG Child Development Center. of social and health care services that individuals with Patrick, D. L. 1997. “Rethinking Prevention for People with Disabilities, Part I: A Conceptual Model for Promoting Health.” physical and mental disabilities receive. American Journal of Health Promotion 11(4): 257–260. Privatization (or liberalization, as it sometimes is Patrick, D. L., M. Richardson, H. E. Starks, M. A. Rose, and S. called) has strong political, technical, strategic, and Kinne. 1997. “Rethinking Prevention for People with ideological dimensions. It has been proposed as a Disabilities, Part II: A Framework for Designing strategy to meet an almost limitless set of objectives, Interventions.” American Journal of Health Promotion 11(4): from shrinking the overall size of government, to rais- 261–263. Schneiderman, N., M. A. Speers, J. M. Silva, H. Tomes, and J. H. ing funds and lowering taxes, to enhancing the techni- Gentry. 2001. Integrating Behavioral and Social Sciences cal efficiency of specific public-sector services. For with Public Health. Washington, DC: American Psycho- some, privatization is an end in itself; for others, it is logical Association. the means to other valued outcomes. Simeonsson, R. J. and M. Leskinen. 1999. “Disability, Secondary The privatization movement raises a number of Conditions, and Quality of Life: Conceptual Issues.” important fundamental public policy questions that Pp. 51–72 in Issues in Disability & Health: The Roles of Secondary Conditions & Quality of Life, edited by R. J. governments and citizens must address. These Simeonsson & L. N. McDivitt. Chapel Hill: University of questions include the following: How large of a role North Carolina, FPG Child Development Center. should governments play in their nation’s economies? Simeonsson, R. J. and L. N. McDivitt, eds. 1999. Issues in What are the basic realms and responsibilities of gov- Disability & Health: The Roles of Secondary Conditions & ernments? What specific tasks should governments Quality of Life. Chapel Hill: University of North Carolina, perform for their citizens? Which tasks are best FPG Child Development Center. World Health Organization. 1980. International Classification of performed by the private sector? What role should Impairments, Disabilities, and Handicaps: A Manual of governments play in regulating functions best imple- Classification Related to the Consequences of Disease. mented by the private sector? Geneva, Switzerland: World Health Organization. The term privatization first appeared in the busi- ness and management literature in the early 1970s. Economic and social theorist Peter Drucker is credited ᨘ PRIMARY AND with inventing the word. Since it was coined, numer- SECONDARY EDUCATION ous definitions of privatization have been proposed. Some of them have been very broad and vague, while See Education, Primary and Secondary others have been very narrow and specific. All of the definitions, however, have two common elements: a movement away from the reliance on government ᨘ PRIVATIZATION agencies to provide goods and services and a move- ment toward the private sector and market forces. Starting in the late 1970s and continuing today, there Privatization can take on a myriad of forms. They has been a worldwide movement by countries to pri- include governments: contracting with organizations vatize government-owned industries and state-provided in the private sector to purchase goods and services; services. Starting with Prime Minister Margaret providing grants and subsidies to individuals and Thatcher, the rightist governments in the United organizations to encourage them to provide needed 1294———Privatization items; charging consumers fees for the use of particu- and reduces inefficiencies. They state that selling off lar services; encouraging volunteerism so that chari- government-owned hospitals brings much-needed ties and other organizations assume a larger portion money into state, county, and regional coffers. And of the social burden; encouraging self-help services privatizing local clinics removes their operating costs by individuals and groups; granting franchises to from public budgets. Proponents argue that private private organizations to provide particular services companies, or groups of physicians, who purchase within specific geographic areas; issuing vouchers these medical facilities can run them more efficiently, to consumers, authorizing them to purchase specific increase patient access, and provide better quality care. goods and services from government-approved private- They also indicate that privatization can “free up” sector companies; totally withdrawing from the provi- scarce government resources to provide services for sion of existing services; selling assets, such as land the poor, to the extent that those individuals who are holdings, to the private sector to generate revenue or willing and able to pay for health services seek care to spur development; and deregulation, the weakening outside the public sector. or total elimination of legislative rules and regulations In sharp contrast, opponents of privatization argue governing certain private-sector industries. that although some health care programs may have seri- In the United States, most privatization to date has ous problems and need attention, privatization is not a occurred at the local and state levels of government. general solution to them. Critics say that privatization Much of it has been through increased contracting erodes the very principles of universality and social with private-sector companies to provide such services equity in the delivery of health care services. It creates as trash collection, fire protection, public health labo- an inappropriate “multitiered” health care system where ratory services, and the operation of correctional facil- the provision of care is based on the ability to pay, rather ities. Also, several cities and states have established than on need. Such a system decreases the access of school voucher programs enabling students in public underprivileged groups to care and ultimately worsens schools to enroll in private charter schools. Recently, health outcomes. Also, important preventive care and however, there have been a number of proposals to community public health services such as immuniza- partially privatize the nation’s Medicare and Social tions, which are generally not profitable, tend to be Security programs. neglected. Critics further point out that privatization Outside of the United States, privatization has interferes with real accountability to consumers. Last, taken place mainly at the national level and primar- they argue that privatization hurts health care workers ily through the sale of assets and the withdrawal of because it threatens their job security, pay and benefits, services. Many countries have concentrated their pri- working conditions, and career opportunities. vatization efforts in the areas of telecommunications, Despite the large number and types of privatiza- energy production, and health care and community tion programs implemented in countries throughout services. For example, Sweden, the world’s traditional the world, it is notoriously difficult to assess their exemplar of the welfare state, has privatized much impacts. There have been few evaluations of the of its health care system, selling many of its formerly programs in terms of their stated objectives. Even in state-owned hospitals to private corporations. crude terms such as the number of privatized firms, Views about privatization’s virtues and pitfalls vary the proceeds of sales, or the share of gross domestic widely. In most cases, the views are fundamentally product coming from the private sector, it is very dif- ideological and political in nature. Conservatives in ficult to get hard data and an overall picture. Many general and businesses in particular tend to advance of the privatization programs have been implemented positive arguments, while liberals in general and labor haphazardly and often with little consistency across unions in particular are strongly opposed to any form of different regions of counties. Furthermore, because every privatization. industry is different and because countries have their Proponents of the privatization of health care argue own unique cultures and traditions, no two acts of pri- that it enhances individual choice, fosters innovation, vatization are ever identical. Privatization———1295

The effects of privatization on health care services group of largely urban, rich elites receives services and patient outcomes are also very difficult to assess. from private for-profit clinics. In several countries, privatization appears to have In summary, it is not clear how individuals with adversely affected the health of its citizens. For physical and mental disabilities have fared under these example, in Russia, after the collapse of communism, and other privatization programs. It is clear, however, many former state-owned hospitals and clinics were that all privatization efforts must address the special privatized. Some of these private for-profit facilities and unique social and health care service needs of those offer the latest medical technology and high-quality with disabilities. To protect them and other disadvan- health care but, unfortunately, at prices that few taged groups, governments must maintain a safety net Russians can afford. At the same time, state-owned of services that they alone can provide. Last, although facilities are critically short of money and medicine, empirical studies do not provide clear evidence on the equipment and buildings are crumbling, and physi- costs and benefits of privatization, public perceptions cians and nurses earn near-poverty wages. The decline and pressures to improve government efficiency and of these facilities has resulted in a rise in Russia’s hold down taxes will keep proposed privatization pro- overall mortality rate and a decrease in average life grams on present and future government agendas. expectancy unparalleled among developed nations in —Ross M. Mullner and recent peacetime history. Kyusuk Chung Rural health care in the People’s Republic of China is reported to have suffered because of privatization. See also Health Management Systems; Managed Care; Political As China moved toward a free market system, an Economy. increasing number of state-owned clinics have con- tracted out services, and a large number of privately Further Readings owned for-profit clinics have been established. The Murphy, Joseph. 1996. The Privatization of Schooling: Problems for-profit clinics charge their own rates, which many and Possibilities. Thousand Oaks, CA: Corwin Press. of China’s hundreds of millions of poor rural citizens Pollock, Allyson M. and David Price. 2000. “Rewriting the cannot afford. The private clinics have also led to the Regulations: How the World Trade Organization Could Accelerate Privatization in Health-Care Systems.” Lancet decline in community public health services. Because 356:1995–2000. it is not profitable, clinic physicians no longer trek Sparer, Michael S. 1999. “Myths and Misunderstandings: Health to distant villages to vaccinate children or to exhort Policy, the Devolution Revolution, and the Push for women to obtain prenatal care. Privatization.” American Behavioral Scientist 43(1): 138–154. The health care system of Mozambique also United Nations Department of Economic and Social Affairs. Privatization of Public Sector Activities with a Special appears to have suffered from privatization. After 1999. Focus on Telecommunications, Energy, Health and Community independence, the Mozambique government estab- Services. New York: United Nations. lished a national primary health care system. The World Health Organization, Regional Office for Europe. 2002. system was so successful that the World Health The Role of the Private Sector and Privatization in European Organization considered it a model for other African Health Systems. Copenhagen, Denmark: World Health nations. To undertake various development projects, Organization. The Commanding Mozambique borrowed funds from the World Bank, Yergin, Daniel and Joseph Stanislaw. 1998. Heights: The Battle Between Government and the Market- the International Monetary Fund, and other interna- place That Is Remaking the Modern World. New York: Simon tional financial institutions. These institutions pres- & Schuster. sured the nation to adopt free market policies. Many local private organizations and foreign agencies began Websites providing health care services. As a result, Mozambique National Center for Policy Analysis, www.ncpa.org/new/ iss/int/ now has a two-tiered health system where poor people pd92001g.html continue to seek care in an underfunded, understaffed, Reason Public Policy Institute, www.rppi.org/privatization/index demoralized government-run system, while a small .shtml 1296———Professions

ᨘ PROFESSIONS and capitalistic exploitation—a vision that has not materialized. Professions are a special type of occupation. The sociological study of professions examines the social forms taken when work is organized and controlled by AN EVOLVING experts. According to Freidson (1970a, 1970b, 2001), SOCIOLOGICAL INQUIRY work (“the practice of knowledge”) is best understood Analysis of professions has undergone its own evolu- by constructing three ideal types (or conceptualiza- tion. Early works such as Carr-Saunders and Wilson tions) of work: free market, bureaucratic, and profes- (1933) adopted a functionalist approach to social analy- sional. Each ideal type represents a different form of sis, an analytical framework that reached its zenith control over work: (1) the consumer/buyer (free market), in the 1950s and 1960s with the theoretical writings (2) managerial (bureaucratic), and (3) occupational of Talcott Parsons. In 1970, Eliot Freidson published (professions). In turn, each has its own characteristic two watershed volumes, The Profession of Medicine: ideology: the market in consumerism (or what A Study in the Sociology of Applied Knowledge and Freidson terms “popularity generalism”), the firm in Professional Dominance: The Social Structure of managerialism (“elite generalism”), and professional- Medical Care. Freidson sought to critique the function- ism in “specialization.” Freidson also identifies five alist emphasis and to explain the rise of professional “critical contingencies for establishing and supporting dominance and autonomy—with allopathic medicine professionalism”: (1) an esoteric body of knowledge serving as Freidson’s occupational template. requiring “considerable discretion”; (2) control by the Works critical of the “professional dominance occupation over its own division of labor, (3) its own approach” quickly followed. Notable was work by labor market, and (4) its own training program; and Margali Larson (1977), Paul Starr (1982), and Andrew (5) “an ideology serving some transcendent value.” Abbott (1988). Alternative theoretical frameworks For Freidson, a major sociological question of our included “deprofessionalization” (Haug 1973), “pro- time is the “status of professionalism in advanced letarianization” (McKinlay and Arches 1985), and industrial society.” However, and as noted by Abbott “corporatization” (Light and Levine 1988). A vigor- (1988, 2001), the concept “profession” is distinctly ous decade-long debate between Freidson and his crit- Anglophone, with the term having no direct transla- ics ensued, as insights into the nature of professions tion in either French or German. Professions trace were extended to occupational groups other than medi- their early roots to the guild system in England. The cine and to a more nuanced cross-national understand- general form, as we know today, emerged in the early ing of professional work (Hafferty and McKinlay to mid-1800s in England and the United States, with 1993). Most recently, Light (2000) has extended his medicine serving as the prototypical profession. earlier work on corporatization into a more robust theory Studies of the historical evolution of medicine as a of “countervailing powers.” profession generally point to a period of rapid growth from the mid-1800s into the early 1900s, followed by a period of consolidating professional powers and THE “REDISCOVERY” privileges that lasted until the late 1960s. Beginning in OF PROFESSIONALISM the 1970s, traditional professional groups came under BY ORGANIZED MEDICINE sustained attack by rival occupational groups seeking their place under the professionalism sun, a growing The failure of the Clinton Health Plan in 1994 consumer rights movement, increasing encroachment occurred in the midst of what would be the United by the state, and the aforementioned arrival of a for-profit States’ longest running bull (stock) market, thereby marketplace. Social theorists in the 1950s and 1960s unleashing a deluge of investor dollars into a number envisioned a groundswell of professionalism that of new corporations and corporate sectors—health would neutralize the evils of political authoritarianism care being one. What had once been defined almost Professions———1297 solely by the pharmaceutical industry quickly came sociological analysis of expert work. The growth of to include new market sectors such as “health care medicine as a scientific enterprise was both a cause services,” “physician practice plans,” biotechnology, and a consequence of a broadly based effort to “objec- and, most recently, “genomics”—as purchasers and tify” disease and to extend the influence of a distinctly providers alike quickly staked out territory in a new biophysiologic account of “normal” and “patho” “medical marketplace” (itself a new way of thinking physiology. Behaviors and/or attributes that had been and talking about medicine). The arrival of “managed seen as personal shortcomings and/or moral weak- care” and the development of varied strategies to alter nesses became markers of disease, a process sociolo- both physician and patient behaviors were greeted with gists refer to as “medicalization.” This increasing fear and distrust by organized medicine. Editorials, encroachment of medicine over domains of social life commentaries, and articles began to appear in auth- was not without detractors (Illich 1976). Nor were oritative medical journals (e.g., JAMA, New England they without negative consequences, as advances in Journal of Medicine, BMJ) about the “inherent con- medical science seemed to be doggedly shadowed by flict” between medicine’s “culture of professionalism” the rise of treatment side effects, iatrogenic disease, and the marketplace’s “culture of commercialism” and and an appalling rate of fatal medical errors. Orga- medicine’s loss of public trust. In turn, a number of nized medicine, operating within an insular cocoon medical organizations ranging from trade groups (e.g., of elitism and arrogance, rebuffed criticisms. Earlier Association of American Medical Colleges) to spe- promises to place the patient’s welfare ahead of its cialty societies (American Board of Internal Medicine) own (e.g., altruism) slowly morphed into a less strin- to accrediting agencies (American Council of gent promise that medicine would act in the best inter- Graduate Medical Education) began to call for a reded- ests of the patient (paternalism). Organized medicine ication to the principles of professionalism, for a more had become less responsive to the needs and concerns explicit presence of professionalism in medical educa- of patients. tion, and for the development of licensure and accred- itation standards for professionalism. Similar efforts A FUNDAMENTAL TENSION BETWEEN appeared in England and Canada. PROFESSIONALISM AND DISABILITY

MEDICINE AND THE The emergence of “disability” as a unique social form, “NEW PROFESSIONALISM” distinct from that of “impairment,” reflects the emer- gence of a “social” versus a “medical model” of dis- This mingling of medicine and Wall Street, along with ability. This growing recognition of the barriers faced other social changes, brought about another call to by people with physical and/or cognitive conditions was professional arms, this one for a “new professionalism” not defined solely by pathophysiology or rooted within or for a “reformulation” of old professional ideals. the individual but could (and did) involve elements of Traditional professional values or organizational forms social organization. This recognition, however, with its such as a “autonomy,” “monopoly,” “hegemony,” and underlying recognition of a form of expertise rooted “hierarchy” were deemed “lacking” and/or “inappro- within the lived experience of disability, stands in con- priate” in a “new medical era.” Instead, the physician flict with professionalism—and not just “medicine’s and patient were being cast as a “partnership of version” (grounded in scientific expertise) but sociol- equals.” ogy’s as well (with its focus on “expert work”). Of the two, the conflict between the disability and medical pro- MEDICINE AND THE SHIFT fessionalism is more stark. Sociological professional- FROM IMPAIRMENT TO DISABILITY ism, on the other hand, is not so much “antidisability” as it is likely to view disability as part of a broader con- The evolution of disability as a social form follows a sumer rights movement than as a countervailing example somewhat similar path to that of professions and the of expertise grounded in knowledge. 1298———Professions

Recent calls for a “patient-centered” medicine experts.” Patients may constitute competing sources rooted in egalitarian notions of a “partnership among of authority—“the market” for individuals with equals” have served to heighten this tension between disabilities (as consumers) and professionalism for traditional medical authority (e.g., the physician as physicians—but this does not elevate experience to expert—the patient as the object of that expertise) and expertise. the physician-patient relationship as a partnership However, as Western industrialized nations face the of authoritative equals. The rise of genomics and the tsunami of an aging population, so will medicine and search for the “root causes” of disease also stand to sociology face the conjoint social fact that age is more re-excite tensions between the individual-medical and than a biological marker and that lived experience the social-discriminatory models of disability. While may well come to represent a new type of social individual physicians may profess or “play at” part- authority. nering, the prevailing belief system within medicine is —Frederic W. Hafferty that medicine believes itself to be a “culture of no culture” (Taylor 2003) and therefore a domain where See also Medicine; Models. knowledge is neither relative nor culturally deter- Further Readings mined but rather exists as “fact” and therefore outside the relativizing presence of time, place, or social Abbott, Andrew. 1988. The System of Professions: An Essay on arrangement/forms. This cult of science, with its ide- the Division of Expert Labor. Chicago: University of Chicago ology of “objectivity,” is not so much disdainful of the Press. ———. 2001. International Encyclopedia of the Social & lived experience of patients with disabilities as it is Behavioral Sciences (www.sciencedirect.com/science/ truly uncomprehending about how “subjective experi- referenceworks/0080430767). ence” can be anything more than a source of distortion Albrecht, Gary L. 1992. The Disability Business: Rehabilitation in and bias. All of this is taking place within an occupa- America. Newbury Park, CA: Sage. tional arena (medicine) that itself is currently undergo- American Board of Internal Medicine (ABIM). 1995. Project Professionalism. ing a fundamental value shift via the “evidence-based Philadelphia: American Board of Internal Medicine. medicine” movement. In this latest iteration of scien- Annals of Internal Medicine. 2002. “Medical Professionalism in tific objectivity, “truth” is to be based on “evidence” the New Millennium: A Physician Charter.” Annals of Inter- rather than “experience,” whether that experience is nal Medicine 136:243–246. the clinical type of practitioners or the “lived” expertise Arnold, Louise. 2002. “Assessing Professional Behavior: of patients. Yesterday, Today, and Tomorrow.” Academic Medicine The identification of disability as residing in social 77:502–515. Blank, L., H. Kimball, W. McDonald, and J. Merino. 2003. arrangements and structures (as opposed to individu- “Medical Professionalism in the New Millennium: A als) also allows medicine to disavow expertise and Physician Charter 15 Months Later.” Annals of Internal authority in this later arena and thereby delegate “those Medicine 138:839–841. problems” to other health care or social service Blumenthal, David. 1994. “The Vital Role of Professionalism in workers, all the while maintaining occupational con- Health Care Reform.” Health Affairs 13:252–256. The Professions. trol over what medicine considers to be the defining Carr-Saunders, A. M. and P. A. Wilson. 1933. Oxford, UK: Clarendon. issue—physiologic or cognitive impairment. While Coburn, David. 1993. “Professional Powers in Decline: Medicine any such unbundling may invite other types of “experts” in a Changing Canada.” Pp. 92–104 in The Changing into the fray, it does not, necessarily, acknowledge Medical Profession: An International Perspective, edited by patients as an alternative and legitimate source of Frederic W. Hafferty and John B. McKinlay. New York: expertise. As noted above, the sociological definition Oxford University Press. of professionalism stresses “esoteric knowledge” and Cruess, Richard L. and Sylvia R. Cruess. 1997. “Teaching Medicine as a Profession in the Service of Healing.” “considerable discretion” with respect to its work. Academic Medicine 72(11): 941–952. This stands at odds with the notion of physician and Frankford, David M. and Thomas R. Konrad. 1998. “Responsive patient as equal partners or, better still, “equal Medical Professionalism: Integrating Education, Practice, Professions———1299

and Community in a Market-Driven Era.” Academic Loeser, Helen and Maxine Papadakis. 2000. “Promoting and Medicine 73(2): 138–145. Assessing Professionalism in the First Two Years.” Academic Frankford, David M., Melina Patterson, and Thoms R. Konrad. Medicine 75:509a–510a. 2000. “Transforming Practice Organizations to Foster Life- Ludmerer, Kenneth M. 1999. “Instilling Professionalism in long Learning and Commitment to Medical Professional- Medical Education.” Journal of the American Medical ism.” Academic Medicine 75:708–717. Association 282(9): 881–882. Freidson, Eliot. 1970a. Profession of Medicine: A Study of the McArthur, John H. and Francis D. Moore. 1997. “The Two Sociology of Applied Knowledge. New York: Harper & Row. Cultures and the Health Care Revolution.” Journal of the ———. 1970b. Professional Dominance: The Social Structure of American Medical Association 277(12): 985–989. Medical Care. New York: Atherton. McKinlay, John B. and Joan Arches. 1985. “Toward the ———. 2001. Professionalism: The Third Logic. Chicago: Proletarianization of Physicians.” International Journal of University of Chicago Press. Health Services 15(2): 161–195. Hafferty, Frederic W. 2000. “In Search of a Lost Cord: Mechanic, David. 2000. “Managed Care and the Imperative for a Professionalism and Medical Education’s Hidden New Professional Ethic: A Plan to Address the Growing Curriculum.” Pp. 11–34 in Educating for Professionalism: Misfit between Traditional Medical Professionalism and Creating a Culture of Humanism in Medical Education, Emerging Health Care Structures.” Health Affairs 19(5): edited by Delese Wear and Janet Bickel. Iowa City: 100–111. University of Iowa Press. Mechanic, David and Mark J. Schlesinger. 1996. “The Impact of Hafferty, Frederic W. and Donald W. J. Light. 1995. “Professional Managed Care on Patients’ Trust in Medical Care and Their Dynamics and the Changing Nature of Medical Work.” Physicians.” Journal of the American Medical Association Journal of Health and Social Behavior 32:132–153. 275(21): 1693–1697. Hafferty, Frederic W. and John B. McKinlay. 1993. The Changing Oliver, M. 1996. Understanding Disability: From Theory to Medical Profession: An International Perspective. Practice. London: Palgrave Macmillan. New York: Oxford University Press. Parsons, Talcott. 1939. “The Professions and Social Structure.” Haug, Marie R. 1973. “Deprofessionalization: An Alternate Social Forces 17:457–467. Hypothesis for the Future.” Sociological Review Monograph Relman, Arnold S. 1998. “Education to Defend Professional 20:195–211. Values in the New Corporate Age.” Academic Medicine Illich, Ivan. 1976. Medical Nemesis: The Expropriation of Our 73(12): 1229–1233. Health. New York: Pantheon. Rothman, David J. 2000. “Medical Professionalism—Focusing on Irvine, Donald. 1997a. “The Performance of Doctors: I. Profes- the Real Issues.” New England Journal of Medicine 342(17): sionalism and Self Regulation in a Changing World.” British 1284–1286. Medical Journal 314:1540–1543. Sackett, David L., W. M. Rosenberg, J. A. Gray, R. B. Haynes, ———. 1997b. “The Performance of Doctors: II. Maintaining and W. S. Richardson. 1996. “Evidence Based Medicine: Good Practice, Protecting Patients from Poor Performance.” What It Is and What It Isn’t.” British Medical Journal British Medical Journal 314:1613–1615. 312:71–72. ———. 2001. “Doctors in the UK: Their New Professionalism Schlesinger, Mark J., Bradford H. Gray, and Krista M. Perreira. and Its Regulatory Framework.” Lancet 358:1807–1810. 1997. “Medical Professionalism under Managed Care: The Kohn, L. T., J. M. Corrigan, and M. S. Donaldson. 2000. To Err Is Pros and Cons of Utilization Review.” Health Affairs 16(1): Human: Building a Safer Health System: Quality of Health 106–124. Care in America. Washington, DC: National Academy Press. Starr, Paul E. 1982. The Social Transformation of American Krause, Eliot. 1996. Death of the Guilds: Professions, States, and Medicine: The Rise of a Sovereign Profession and the the Advance of Capitalism: 1930 to the Present. New Haven, Making of a Vast Industry. New York: Basic Books. CT: Yale University Press. Sullivan, William M. 1999. “What Is Left of Professionalism after Larson, M. S. 1977. The Rise of Professionalism: A Sociological Managed Care?” Hastings Center Report 29:7–23. Analysis. Berkeley: University of California Press. Taylor, Jeffrey S. 2003. “Confronting ‘Culture’ in Medicine’s Light, Donald W. J. 2000. “The Medical Profession and ‘Culture of No Culture.’” Academic Medicine 78:555–559. Organizational Change: From Professional Dominance to Wear, Delese and Brian Castellani. 2000. “The Development of Countervailing Power.” Pp. 201–216 in Handbook of Professionalism: Curriculum Matters.” Academic Medicine Medical Sociology, 5th ed., edited by Chloe E. Bird, Peter 75:602–611. Conrad, and Allen M. Fremont. Upper Saddle River, NJ: Prentice Hall. Websites Light, Donald W. J. and Sol Levine. 1988. “The Changing Character of the Medical Profession: A Theoretical American Board of Internal Medicine (ABIM), www.abimfoun Overview.” The Milbank Quarterly 66:10–32. dation.org 1300———Progressive Era Women in Special Education

ᨘ PROGRESSIVE ERA WOMEN disabilities and the ways they might be otherwise IN SPECIAL EDUCATION educated. As the field of special education was new, it held great potential as a niche where professional While special education has taken significant women might gain positions of significant authority, advances in recent decades, throughout the world, its without encountering resistant, entrenched networks. history did not begin in the 1960s. Generations earlier, In addition, the specialties of pediatric medicine, reformers, often women, were beginning to establish public health nursing, and eugenics research were the underpinnings of pedagogical and therapeutic unusually accepting of women’s expertise, with the approaches to children whose disabilities seemed to added assumption that any endeavor that involved require alternative means of education, as well as the children or health appealed to a “natural” talent inher- bureaucratic and professional cultures that have devel- ent in the female sex. oped to provide those alternatives. These women Among the many women whose names appear in worked in various national contexts, from a wide the era’s history of special education, only a few can array of motives and backgrounds; they shared an be mentioned here. Italian doctor Maria Montessori era of innovation and unprecedented opportunity for (1870–1952) is best known today as a pioneer in early women’s participation in policy making and the devel- childhood education, but she derived many of her theories opment of theory. during her stint as director of the State Orthophrenic The numbers of women activists who took a role in School in Rome, where she performed direct teaching Progressive-era beginnings of special education are with “feebleminded” children as well as developing a impressive and may be explained by several factors. teacher training program. In London, Mary Ward Reformers in the Progressive era were often especially (1851–1920) was a novelist from a literary family drawn to the problems of children in cities, immigrant when she became involved in philanthropy, founding children, and other young people in apparent crisis. the Passmore Edwards Settlement (now the Mary Through the settlement movement and similar ven- Ward Centre); among its offerings, beginning in 1898, tures, reform-minded women’s groups sought reforms was an innovative model day school for children with that some term “maternalist” because they imposed disabilities. A year after the English school opened, middle-class notions of femininity, hygiene, and Elizabeth Farrell began teaching an ungraded class of domestic relations on the working-class objects boys in the New York City public schools, using a self- of their charity. While many of these reforms seem developed curriculum that emphasized individualized, uncontroversial today—child labor regulation, milk practical skill building. Farrell, who would eventually safety, kindergartens, urban playgrounds, and parks— found the Council for Exceptional Children, was part others cast grave suspicions on families that could not of a cluster of socially active women centered around easily conform to the domestic ideals proposed. And public health nurse Lillian Wald (1867–1940), who among the latter were measures to identify and segre- founded the Henry Street Settlement and mentored gate children with special educational needs, especially Lina Rogers (the first public school nurse in the United those associated with eugenic “defect.” States) and Margaret Sanger (the birth control activist). Meanwhile, newly opened opportunities in medi- Meanwhile in Providence, Rhode Island, two medical cine, education, government, and law gave some indi- doctors, Mary S. Packard and Ellen Stone, conducted vidual women professional credentials and expertise a summer camp in 1907 for children with tuberculosis, for establishing programs. Women working in the which would develop into school-year programming in public schools as teachers and administrators saw specialized classrooms to serve students with special the need for separate classes and methods for educat- health needs. These stories must stand for those of many ing “misfit” students; women with medical train- other women in the early twentieth-century history of ing working in such positions as health inspectors, special education. home visiting nurses, and clinic doctors saw the children unserved by public schools on account of their —Penny L. Richards Psychiatric Disorders———1301

See also Feminism; Maria Montessori; Margaret Sanger; Special initial onset as young adults without a prior premorbid Education. psychiatric disorder in childhood. Although preva- lence rates in adult and child populations approximate Further Readings each other, the numbers are not in and of themselves Carlson, Licia. 2001. “Cognitive Ableism and Disability Studies: predictive of how psychiatric disorders impair or Feminist Reflection on the History of Mental Retardation.” disable over the life course of an individual within a Hypatia 16(4): 124–146. Hendrick, Irving G. and Donald L. MacMillan. 1989. “Selecting population as the correlation between symptoms and Children for Special Education in New York City: William disability, while positive, remains weak. Some indi- Maxwell, Elizabeth Farrell, and the Development of viduals can function well with severe symptoms, and Ungraded Classes, 1900–1920.” Journal of Special others are genuinely disabled with few symptoms. Education 22(4): 395–417. It is estimated that approximately 20 million adults Kode, Kimberly. 2002. Elizabeth Farrell and the History of in the United States have psychiatric impairment. Of Special Education. Arlington, VA: Council for Exceptional Children. this number, 4.5 million adults have persistent mental Larson, Edward J. 1995. “‘In the Finest, Most Womanly Way’: disorders that, by virtue of the severity of their symp- Women in the Southern Eugenics Movement.” American toms, significantly disrupt or impair their ability to carry Journal of Legal History 39:119–147. out activities of daily living (ADLs). ADLs include Montessori, Maria. [1912] 1965. The Montessori Method. maintenance of personal care and hygiene, maintenance Translated by Anne E. George. New York: Schocken. of school or job tasks, maintenance of household duties and responsibilities, and maintenance of interpersonal ᨘ relationships. When these functions are disrupted by a PROSTHESES psychiatric disorder, an individual is said to have a psy- chiatric disability. By understanding and measuring See Mobility Aids disruptions in ADLs, the extent of the disability can be measured quantitatively and qualitatively. It is well documented that individuals with psy- ᨘ PSYCHIATRIC DISORDERS chiatric disabilities manifest limitations in everyday functioning. In interpersonal situations, social cues are Psychiatric disorders are estimated to affect 20 per- misinterpreted, yielding inappropriate responses to cent of the adult population in America in any given social situations. Minor stressors can lead to catastrophic year. Although less well developed for children, epi- emotional responses. Individuals can experience poor demiological studies estimate an annual prevalence concentration, poor memory, lack of initiative, lack of rate of 20 percent for this population also. With more affective expression, and indifference to socially appro- than 40 million persons affected annually by mental priate expectations. These symptoms place the individ- illness in the United States, it is likely that very few ual with a mental illness at a disadvantage in a society individuals have not had contact with a person with a where cognitive and interpersonal skills are highly psychiatric disorder. Psychiatric disorders exist along valued. In developing and agricultural societies, the a spectrum from the very mild, with little or no evi- World Health Organization (WHO) has shown that indi- dence of disability, to the very severe, with profound viduals can enjoy higher functioning in the presence of disruptions in all areas of functioning, leading to severe, more severe psychiatric illness. disabling consequences. The World Health Organization’s International Based on functional impairment, it is estimated that Classification of Impairments, Disabilities and Handi- 9 percent of the adult population has severe mental caps has stated that psychiatric disability is a pre- disorders. Prevalence rates in childhood are not pre- dictable consequence of having chronic severe mental dictive of adult prevalence rates. Many children with illness. With disability, there are always quantifiable psychiatric disorders will recover from their disorders. restrictions and lack or loss of the ability to perform Many adults with psychiatric disorders have their specific roles and tasks. 1302———Psychiatric Disorders

PSYCHIATRIC DISORDERS or tingling in fingers or around the mouth, and chest tightness. Symptoms generally peak within 10 minutes. The fourth edition of the Diagnostic and Statistical Chronic symptoms can lead to significant impairment Manual of Mental Disorders (DSM-IV) is the official in functioning as the individual attempts to avoid diagnostic manual used in the United States for diag- those situations psychologically linked to the panic nosing psychiatric disorders. The content of the DSM- attacks’ occurrence. IV is exhaustive and far exceeds what can be covered in this review. It is an excellent reference text, com- Specific Phobias. This group of disorders is character- prehensive in its scope and readily available to anyone ized by excessive fear of specific objects (simple seeking a comprehensive text describing diagnostic phobia), situations that expose the person to the possi- criteria used to diagnose all psychiatric disorders. bility of judgment or ridicule (social phobia), or situ- Disorders that occur with the greatest prevalence ations where escape may be perceived as difficult by and are likely to be associated with disability are the the patient (agoraphobia). This group of disorders anxiety disorders, mood disorders, schizophrenias, constitutes the most common of all psychiatric disor- and substance abuse disorders. The DSM-IV provides ders according to epidemiological catchment area a comprehensive listing of diagnostic symptoms for (ECA) data. The avoidance or distress that occurs as a each disorder listed. consequence of phobia can be debilitating. As a group, anxiety disorders represent the most common psychiatric disorders. Symptoms include a Obsessive-Compulsive Disorder (OCD). This disorder subjective feeling of nervousness or fear in conjunc- is characterized by persistent and recurrent thoughts, tion with specific physical symptoms. Physical symp- impulses, or images that are experienced as unwanted toms include heart palpitations, shortness of breath, or intrusive (obsessions). The person attempts to alle- sweating, muscle tension, sleep disturbance, fatigue, viate these thoughts and the associated anxiety by urinary frequency, diarrhea, sensation of having a engaging in repetitive nonsensical behavioral rituals lump in the throat, and dilated pupils. These symptoms (compulsions) such as avoiding stepping on cracks in typically manifest themselves when an individual the sidewalk or excessive hand washing. Obsessions comes into contact with a specific object or situation. can impair concentration and thus lead to disability. Persons with anxiety disorders frequently report avoid- Compulsions likewise can lead to incapacitating dis- ance as a means of symptom management. Although ability as the person’s time is consumed by the perfor- not fully understood, it is believed that this category mance of the ritualized behaviors. of psychiatric disorders is caused by a dysregulation of the brain chemicals norepinephrine, serotonin, and Posttraumatic Stress Disorder (PTSD). This disorder gamma amino butyric acid (GABA). typically follows exposure to a traumatic event that is life threatening, leading the person to experience intense Generalized Anxiety Disorder (GAD). Excessive worry fear, helplessness, or threat of losing one’s physical and anxiety in addition to some of the physical symp- integrity. The traumatic event is then reexperienced in toms listed previously characterize this disorder. The a manner that is intrusive, occurring as flashbacks or anxiety, worry, or physical symptoms are severe enough recurrent dreams. Avoidance of events or places that to cause impairment or distress in the individual’s abil- may trigger memories, increased arousal (decreased ity to carry out social or occupational functions. need for sleep), or enhanced startle response are addi- tional associated features. In its most severe forms, this Panic Disorder. Individuals with this disorder fre- disorder causes significant disability. quently report a sudden feeling of impending disaster or doom. Patients frequently report symptoms that MOOD DISORDERS resemble those reported by heart attack victims. These include but are not limited to palpitations, shortness of This category of psychiatric disorders includes those breath, dizziness, sweating, lump in throat, numbness disorders that have a disturbance of mood as the Psychiatric Disorders———1303 primary symptom. The mood may appear as excessively alternate with episodes of subsyndromal depression. sad, as seen in depression, or as excessively happy, Although less severe than Bipolar I, it is associated irritable, or grandiose, as seen in mania. When a patient with significant disruption of social functioning and experiences episodes of depression alternating with a can lead to disability if undiagnosed and untreated. single or multiple episodes of mania, the individual is said to have bipolar disorder. Prevalences for major depression and bipolar disorder in the general popula- SCHIZOPHRENIAS tion are 4.4 percent and 1.2 percent, respectively. This group of disorders includes a spectrum of disor- The etiology of mood disorders is hypothesized to ders characterized by the presence of “psychotic” be related to a dysregulation of neurochemicals in the symptoms. The term psychosis is generally used to brain (norepinephrine and serotonin). indicate a state of impaired reality testing, leading to severe impairment of social, personal, and occupa- Major Depression. This condition refers to a mood dis- tional functioning. Whether schizophrenia is a single order in which the patient experiences sadness, loss of disorder or a series of disorders occurring along a con- interest, or loss of pleasure daily for a period of two tinuum is unresolved. This disorder has a prevalence weeks. During this period, the patient might experience of 1 to 2 percent in the general population. It is crying spells, decreased or increased need for sleep, characterized by symptoms that are referred to as decreased or increased appetite, agitation, loss of “positive” and “negative.” Positive symptoms include energy, loss of sex drive, and thoughts of death. hallucinations, delusions, and bizarre associations. Untreated, this disorder can lead to significant time Negative symptoms include decreased motivation, away from work and an inability to carry out ADLs, as decreased attention, and social isolation. well as result in suicidal behavior or completed suicides. Although the cause of the disorder is unclear, it is believed to be due to a disruption of function of a Manic Depression or Bipolar Illness. This disorder main neurochemical known as dopamine. Dopamine is characterized by recurrent episodes of depression interacting with serotonin, GABA, glutamate, and alternating with mania. The depressive episodes are acetylcholine in such ways as to enhance the effects of synonymous with the major depressive episodes dopamine on neuroreceptors appears to play promi- described previously. Mania is characterized by per- nent role in the etiology of this group of disorders. sistent elevated expansive or irritable mood lasting at Environmental and genetic cofactors appear to play a least one week or shorter if hospitalization is required. significant role in determining who gets these disor- Other accompanying symptoms include inflated self- ders. Of all psychiatric disorders, the schizophrenias esteem, decreased sleep, engagement in high-risk carry the highest level of morbidity and psychiatric behaviors, increased speech production, and goal- disability as a group. directed behavior. A variant of this disorder (Bipolar I), in which symptoms of mania are decreased in their intensity, is known as Bipolar II mood disorder. Both SUBSTANCE ABUSE DISORDERS disorders can lead to significant disability if treatment is not accessed. These disorders represent some of the most prevalent and psychiatrically disabling disorders known. Alcohol Dysthymia. This is a disorder that is experienced by abuse and dependency affect 15 to 17 percent of the the affected person as a subjective experience of a general adult population. Alcohol or another drug continuous low-grade form of sad mood lasting a min- of abuse is involved in 50 percent of homicides and imum of two years but not meeting threshold criteria 33 percent of suicides recorded in the United States. for the diagnosis of major depression. Substance abuse or dependency is typically seen as a comorbid condition in all of the major psychiatric Cyclothymia. This disorder is an attenuated form of diagnostic groups. Schizophrenia, bipolar disorder, bipolar illness. In this disorder, episodes of mania and anxiety disorders are all associated with significant 1304———Psychiatric Disorders levels of comorbid substance abuse or dependency. social functioning, interpersonal dependency, and Substance abuse contributes to the morbidity of psy- arrested achievement. chiatric disorders by precipitating psychiatric disor- Many individuals with psychiatric disorders are in ders directly (e.g., substance-induced mood or anxiety a double bind. On one hand, they have an illness that disorders) or by exacerbating a pre-existing disorder in can profoundly impair them emotionally, interperson- an individual. Failure to diagnose and treat substance ally, and professionally. On the other hand, the stigma abuse in patients results in treatment noncompliance, attached to mental illness prevents some individuals treatment failure, overutilization of mental health from accessing mental health systems where help is resources due to recidivism, and increased rates of available that could reduce the disabling consequences suicide. of living with a psychiatric disorder. Typical substances abused by today’s adolescent It is not unusual for individuals with psychiatric dis- and adult populations include alcohol, cocaine, mari- orders to have lower socioeconomic status, to experi- juana, ecstasy, heroin, and PCP. All have addictive ence social isolation and rejection, to have lowered potential, but addiction is not a prerequisite to these expectations from family and friends, to have increased substances having a profound impact on the course rates of substance abuse, or to have increased levels of and outcome of psychiatric disorders. homelessness and crime victimization. Clearly, mor- bidity associated with mental illness is significant and SUMMARY requires the collective efforts of our nation’s health care system to find treatment strategies that are accessible, When thinking about psychiatric disorders associ- affordable, and tolerable, whether pharmacologically, ated with disability, one should keep in mind specific psychotherapeutically, or psychosocially based. characteristics held in common by all that can lead to Psychiatric disorders are treatable, and the cost in functional impairment. both financial and personal terms of not treating them Many psychiatric disorders, when severe (as can be monumental. It is estimated that more than defined by the presence of psychotic symptoms), have $100 billion in direct (associated with treating psychi- symptoms such as hallucinations, delusions, disor- atric disorder) and indirect costs (associated with loss dered thoughts, poor concentration, and loss of reality of productivity and other sequelae of being mentally testing. These symptoms can interfere with the ill) is spent yearly. Not treating these disorders can patient’s ability to make decisions, process informa- lead to major disruptions in interpersonal relation- tion, problem solve, or follow instructions. Occurring ships, diminished socialization, loss of educational singularly or in combination, it is not a stretch to ascer- opportunity, and failure to maximally participate in tain that impaired functioning can be a consequence. society and make significant contributions. The life course of a psychiatric disorder may reveal Activities and interventions directed at reducing the the presence of intermittent or constant symptoms. potential for disability in at-risk individuals need to Psychiatric symptoms can result in a person experi- focus on those factors that can reduce the effects of encing low self-esteem, loss of confidence, emotional psychiatric disorders as they are diagnosed or reduce fragility, and feelings of helplessness and hopeless- the long-term effects of the disorders once an illness ness. The consequence of these symptoms can be a manifests itself. Thus, activities that focus on preven- lack of initiative, lack of motivation, loss of confi- tion by educating at-risk populations to seek mental dence, and lack of pleasure, which can impair one’s health services can be effective. Education of the ability to perform tasks, function in required roles, or public at large that reduces stereotyping and stigmati- carry out the daily activities of living. zation of those with psychiatric disorders can further Because psychiatric disorders typically have their enhance reduction of potentially disabling symptoms onset for many in the most productive years of life, of mental illness by encouraging and promoting early many individuals experience interruptions in social diagnosis and treatment. It is not enough for those and interpersonal development that lead to impaired with mental illnesses to simply avail themselves to Psychiatric Survivors Movement———1305 treatment; they must also comply with recommenda- Ormel, J., M. VonKorff, T. B. Ustun, S. Pini, A. Korten, and T. tions made by physicians and other mental health care Oldehinkel. 1994. “Common Mental Disorders and workers if treatment is to be successful. Reduced Disability across Cultures: Results from the WHO Collaborative Study on Psychological Problems in General morbidity or disability defines success in this case. Health Care.” Journal of the American Medical Association Many communities have underdeveloped mental 272(22):1741–1748. health networks that can lead to reduced availability Penn, D. L. and J. Martin. 1998. “The Stigma of Severe Mental of mental health services. Inadequate funding, lack Illness: Some Potential Solutions for a Recalcitrant of qualified mental health professionals, and absent Problem.” Psychiatric Quarterly 69:235–247. rehabilitation services can contribute to the disabling Schweitzer, Robert. n.d. “What Is Mental Illness? What Is Psychiatric Disability?” Retrieved May 6, 2005 (http:// effects of mental disorders over time. Improved aware- counseling.uchicago.edu/vpc/qut/what.html). ness by citizenry may lead to improved availability as U.S. Department of Health and Human Services. 1999. Mental citizens lobby their government officials for increased Health: A Report of the Surgeon General. Rockville, MD: expenditures for the creation of more mental health U.S. Department of Health and Human Services. service networks. Zuckerman, D., K. Deberham, and K. Moore. 1993. The ADA and Even when available, mental health services are People with Mental Illness. Available from the National Mental Health Association, 1021 Mince Street, Alexandria, often underused. Access issues related to affordability VA 22314–2971; (708)-684–7722. of mental services can create opportunities for dis- ability. For the working poor and minority communi- Websites ties, lack of adequate insurance coverage can prevent NAMI, www.nami.org/template.cfm?section=by_Illness individuals from gaining access to treatment, thus National Institute of Mental Illness, www.nimh.nih.gov contributing to the potential for disability. Stigma associated with having a psychiatric illness may also negatively affect access to psychiatric services. ᨘ PSYCHIATRIC SURVIVORS Providing improved ways of funding services and MOVEMENT educating the public on the importance of accessing these services can reduce disability. Addressing The psychiatric survivor movement consists of a mental health availability and access issues through loosely affiliated coalition of individuals who have increased funding and education in conjunction with used the psychiatric system and found it extremely efforts to make mental health services more sensitive lacking. Most members portray their experiences as to the specific cultural needs of those being serviced harmful and disempowering and therefore have will likely improve utilization. Improved utilization of adopted the term survivor to indicate that fact. Reflect- mental health services offers the best possibility for ing a diversity that is characteristic of the nature of the preventing and controlling the disabling effects of movement, various factions may use different termi- psychiatric disorders, thereby improving outcomes for nologies to describe themselves such as “ex-patients,” many with these disorders. “ex-psychiatric inmates,” “consumers,” “service users,” and “psychiatrically labeled.” —Henry Dove Because self-definition is a central theme within See also Bipolar Disorder; Depression; Mental Illness; Normality; the survivor/user movement, it is accepted that partic- Schizophrenia; Substance Abuse. ipants will define themselves as appropriate, as opposed to having a medical authority “diagnose” Further Readings their condition. Those who use terms such as survivor and inmate emphasize their militancy by taking up a Aday, L. A. 1994. “Health Status of Vulnerable Populations.” decidedly antipsychiatric orientation, while those who Annual Review of Public Health 15:487–509. American Psychiatric Association. 1994. Diagnostic and prefer the term consumer may be less critical of psy- Statistical Manual of Mental Disorders, 4th ed. Washington, chiatry and more attentive to improving the quality of DC: American Psychiatric Association. services. Even given these differences, a sense of the 1306———Psychiatric Survivors Movement mental health system as broken and in need of repair STAGES OF DEVELOPMENT infuses the whole movement. While the method and degree of repair may be somewhat controversial, the Driven by their perception that the psychiatric system innate value of user input and control is an integral damaged its users, the psychiatric survivors move- foundational belief for all factions. ment began when clusters of ex-patients sponta- A largely North American development of the late neously gathered in small local venues. These early 1960s, the psychiatric survivors movement was heav- years were exciting but tiring times. Like other dis- ily influenced by this era’s emphasis on individual abled people, psychiatric survivors were geographi- choice and civil rights. Its membership was collectively cally and socially dispersed, suffering from economic energized by negative experiences at the hands of the hardships, accessibility issues, and stigmatizing social psychiatric system while incarcerated as patients; the forces. Many people with psychiatric labels were still survivor movement is rooted in self-advocacy. It is an in state hospitals or on strong psychiatric medication. important principle of the movement that practices Promoting healing through consciousness raising, that induce discrimination toward those labeled with survivor groups worked to move themselves from a mental illness diagnosis must be changed so that a the static position of victim/survivor to the active role psychiatric diagnosis has no more impact on a of providing mutual support and advocacy. Common patient’s choices and rights than a diagnosis of arthri- goals included fighting for patients’ rights, eradicating tis or heart disease. Challenging their stigmatized sta- stigma, ending economic and social discrimination, tus in society, the movement promotes the values of and creating peer-run support services. Out of these self-help and collective action while rejecting forced seemingly disconnected efforts, coalitions began to treatment of any kind. While it would be incorrect to form, leading to regional associations in Oregon characterize the survivor/user movement as antipsy- (Insane Liberation Front, 1970), Northern California chiatric, it does negatively critique the dominant med- (Network Against Psychiatric Assault, 1972), ical description of mental illness and demands a more New York (Mental Patients’ Liberation Project, 1971), holistic view of mental health disability or, as some and Massachusetts (Mental Patients Liberation Front, survivors might say, “extra-ordinary mental experi- 1971). Early advocates such as Judi Chamberlin, ences.” As one pioneering survivor put it, “Because Howie the Harp, Sally Zinman, Leonard Roy Frank, psychiatric ideology mystifies people’s difficulties and Su and Dennis Budd staged civil disobedience into ‘illness’ that only experts are thought capable of actions, chaining themselves to the gates of psychi- treating, we are all rendered a little less human” atric facilities and picketing American Psychiatric (Chamberlin 1990). Association meetings. While there are overlaps in social and developmen- Sponsored by a nonpatient professor and the tal histories, the relationship between the psychiatric New York City–based Mental Patients’Liberation Project, survivors movement and the disability rights move- the first Conference on Human Rights and Psychiatric ment is a complex one. Kept separate by a theoretical Oppression was held in 1973 at the University of and medical taxonomy applied to physical and mental Detroit. Fifty people from the United States and impairments as if people were either “apples” or Canada, many working together for the first time, met “oranges,” interpretations of disability as different to develop philosophical guidelines. True to the move- types of personal tragedies worked to draw attention ment’s core belief in self-advocacy and leadership, by away from shared situations and shared needs. In 1976, the conference was limited to only patients and addition, some disabled people may have difficulty ex-patients. viewing psychiatric survivors as disabled because The Madness Network News first went to press in their impairment is not evident and may fluctuate. 1972. Begun in San Francisco as a simple newsletter, Alternatively, survivors may not consider themselves it evolved into a newspaper that perpetuated and con- disabled because they reject the medicalization of nected the growing survivor efforts in North America their experiences. and throughout the world. The Madness Network Psychiatric Survivors Movement———1307

News existed solely on subscriptions and volunteer movement’s self-help bible, Reaching Across: Mental efforts yet became the voice of the ex-patients’ move- Health Clients Helping Each Other (Zinman, Harp, ment, publishing a wide range of material that included and Budd 1987). Today, user/survivor groups in personal experiences, art, and factual reporting. It ceased California have a strong public position, and members publication in 1986. sit on mental health–related planning boards and advi- In the late 1970s, the federal government began to sory councils throughout the state. support the movement’s efforts with small grants. The In more recent times, consumer/survivors have Community Support Program was developed within moved into paid jobs as “peer specialists” in their the National Institute of Mental Health to increase the state-funded consumer organizations or as case man- involvement of users in the development of psychi- agers in the mental health system itself. (Prosumer is atric services. Projects such as the “Alternatives” a new term that attempts to capture the liminal posi- conference were begun with its assistance. The first tion of those providing a service within the mental national Alternatives conference was held in 1984 and health system while receiving or having received has been held annually ever since. Offering work- services.) States may require boards that receive fed- shops related to self-help and self-determination, the eral or state mental health funds to include consumer/ Alternatives conference is a great success, bringing survivors. Many states now have an Office of Consumer together national and international leaders in the Affairs, which is headed by a psychiatrically labeled survivor/user movement with an annual attendance person. This infusion of survivor/user perspective can often exceeding 1,500. be attributed to the pioneering efforts of the psychi- Many of the early pioneers in the survivor/user atric survivors movement, with its core belief in the movement were angry, promoting the complete abol- importance of self-determination and the essential ishment of the psychiatric system. By 1980, some humanity of psychiatric system users. individuals were identifying themselves as “con- The Bazelon Center for Mental Health Law was sumers” and had begun organizing self-help advocacy founded in 1972 by a group of committed lawyers and groups and promoting peer-run services. While still professionals in mental health and mental retardation sharing many fundamental beliefs, consumer groups who attempted to affect mental health service provi- differed from earlier militant groups in that they sion through individual and class action suits. In 1980, preferred reform over abolishment, believing certain a group of these lawyers formed the National Associa- traditional services were necessary. Increasingly, tion of Rights Protection and Advocacy (NARPA). these consumer groups have gained access to mental One-third of NARPA’s board of directors must iden- health policy-making and advisory committees. Many tify themselves as current or former recipients of men- such groups have incorporated and now receive direct tal health care. Dedicated to promoting the preferred funding to provide peer-run services. These have proven options of people who have been labeled mentally dis- to be effective, and the “consumer-driven” model is abled, NARPA is committed to the abolishment of all now generally accepted as key to the provision of men- forced treatment. tal health community services. There are some disadvantages to this infusion of The California Network of Mental Health Clients federal funds and the growing coalition with commu- (CNMHC) is an example of a mental health consumer nity mental health agencies. Many “consumer” groups organization. In 1987, it received funding from have become dependent on state or federal money, California’s Protection & Advocacy agency. In 1989, while independent organizations have faded as volun- CNMHC produced The Well-Being Project: Mental teers are drawn to paid positions in publicly funded Health Clients Speak for Themselves (Campbell and projects. A split has formed between “consumers” and Schraiber 1989), which included groundbreaking “survivors,” with the more radical groups, which relish research on mental health services developed and their independence, warning against “sleeping with implemented by mental health clients themselves. the enemy.” While some say the independent psychi- They went on to produce what some consider the atric survivors movement is over, a few radical groups 1308———Psychiatric Survivors Movement continue to directly challenge the fundamental princi- the National Committee of Mental Hygiene, an ples of the psychiatric medical model. In 1988, leaders organization that persists in its current incarnation from several grassroots psychiatric survivor groups as the National Mental Health Association. formed the Support Coalition International. Now an Another landmark moment in the history of mental alliance of nearly 100 groups in 14 countries and known health advocacy occurred in 1961 with Erving as the MindFreedom Support Coalition, it works to Goffman’s (1961) publication of Asylums: Essays on defend the rights of psychiatric survivors and to pro- the Social Situation of Mental Patients and Other mote empowering treatment alternatives. The coali- Inmates. Goffman emphasized that institutionaliza- tion has produced a journal since 1987. Originally tion created the role of “mental patient” and chal- known as the Dendron News, it advocates the global lenged the central importance of diagnosis in networking of “free minds.” predicting outcome. Many psychiatric survivor leaders continue to credit Goffman’s work as signifi- HISTORICAL AND cant in expanding the understanding of how a depen- PHILOSOPHICAL ROOTS dency on long-term institutionalization creates an inherently disempowering system of psychiatric care. Although the psychiatric survivors movement began By the 1940s, invasive procedures such as insulin in 1970, the earlier efforts and writings of former coma therapy, Metrazol convulsive therapy, electrocon- patients in the late nineteenth and early twentieth vulsive therapy (ECT), and prefrontal lobotomy had centuries challenged society’s views on insanity and become popular treatments in psychiatric hospitals. the use of asylums. A good example is the Alleged These often damaging treatments created a tide of criti- Lunatic’s Friend Society, formed in England by cism among users and some professionals. Ken Kesey ex-patients in 1847. Another example would be Mrs. depicted these modes of treatment in a decidedly nega- Elizabeth Packard, who began publishing books and tive fashion in his 1962 novel One Flew Over the pamphlets that detailed her forced commitment in the Cuckoo’s Nest—a book he claimed to have modeled on Jacksonville (Illinois) Insane Asylum in 1868. Though his actual experiences as an orderly at the San Mateo she later founded the Anti-Insane Asylum Society, it Mental Facility. The 1970s movie rendition won five never gathered significant public attention or support. Academy Awards and strongly influenced the general At the same time, Elizabeth Stone worked in public’s view of the psychiatric system while fueling the Massachusetts to change public opinion about mental antipsychiatry and psychiatric survivors movements. states and to stop the incarceration of those unjustly In the 1950s, in response to the excessive and labeled as insane. violent intervention plans developed in the field of With rapid and expansive industrialization, and as psychiatric care, a critical analysis of psychiatry also medical science became more elaborate and readily began from within, among a small number of practi- available, more people were given mental illness diag- tioners. This insider critique, most literally, authorized noses while asylum populations mushroomed. At the the knowledge base for what is recognized today as dawn of the twentieth century, there were approxi- “antipsychiatry.” Charging that the medical model mately 126,000 patients in 131 state hospitals, yet by attended almost exclusively to pathology, antipsychi- 1940, there were 419,000 patients in 181 state hospi- atry accused the field of leaving its patients powerless tals. By the mid-1950s, New York state alone had and isolated. Antipsychiatry practitioners stressed the 93,000 inpatients (Grob 1994). By 1943, with a U.S. value of difference, attempting to reconfigure nor- patient-doctor ratio as strained as 277:1, a hospital malcy and deviance. could become more holding tank than medical treat- In 1965, R. D. Laing, Aaron Esterson, David ment center. In 1908, Clifford Beers wrote A Mind Cooper, and supporters founded the Philadelphia That Found Itself, chronicling his own incarcerations Association, devoted to the creation of therapeutic in public asylums. Speaking out against mistreat- communities that valued agency and experience as ment and neglect within the system, Beers founded integral components of psychosis. In his influential Psychiatry———1309

The Politics of Experience (1961), Laing declared Cooper, D. 1967. Psychiatry and Anti-Psychiatry. London: that normality entailed intrinsic hidden losses, while Tavistock. madness, if we allowed it to unfold instead of subor- Deegan, P. E. 1990. “Spirit Breaking: When the Helping Professions Hurt.” The Humanistic Psychologist 18(3): dinating its power beneath an array of medication and 301–313. psychiatric technology, harbored potential benefits. Estroff, S. E. 1981. Making It Crazy: An Ethnography of As an alternative to medical intervention, he recom- Psychiatric Clients in an American Community. Los Angeles: mended initiation and guidance. University of California Press. Current participants in the antipsychiatry movement Frank, L. R. 1990. “Electroshock: Death, Brain Damage, Memory also often reference The Myth of Mental Illness by Loss, and Brainwashing.” Journal of Mind and Behavior 11(3–4): 489–512. Thomas Szasz. Szasz’s popular work, although origi- Goffman, E. 1961. Asylums: Essays on the Social Situation of nally published in 1961, is still controversial and con- Mental Patients and Other Inmates. New York: Doubleday. tinues to be used as a focal point for the antipsychiatry Grob, G. N. 1994. The Mad Among Us. New York: The Free movement. Remaining active, Szasz consistently pro- Press. poses that psychiatric patients are not ill but are instead Laing, R. D. 1961. The Politics of Experience. New York: social misfits who receive poor treatment and eventu- Pantheon. Rosenhan, D. L. 1973. “On Being Sane in Insane Places.” Science ally find themselves placed improperly in asylums. 179:250–258. In sum, a more radical faction of the psychiatric Rousseau, C. 1993. “Community Empowerment: The Alternative survivors movement eventually affiliated with Resources Movement in Quebec.” Community Mental Health antipsychiatry—both share critiques of a profession Journal 29(6): 535–535. and systematically expose historical violence that Szasz, T. S. 1974. The Myth of Mental Illness, 2d ed. New York: occurred under its purview. The more moderate con- Harper & Row. Zinman, S. 1986. “Self-Help: The Wave of the Future.” Hospital sumer groups reject the complete denouncement of and Community Psychiatry 37(3): 213. the medical model, feeling some portion of traditional Zinman, S., H. T. Harp, and S. Budd, eds. 1987. Reading Across: treatment to be helpful. They would emphasize the Mental Health Clients Helping Each Other. Riverside: fact that many who have been diagnosed with mental California Network of Mental Health Clients. illness relate experiences of real and terrible suffering that both psychiatry and community treatment ulti- Websites mately helped to alleviate. MindFreedom Support Coalition, www.mindfreedom.org National Mental Health Consumers’ Self-Help Clearinghouse, —Pam Wheelock www.mhselfhelp.org Psychiatric Survivor Archives of Toronto, www.psychiatricsur- See also Antipsychiatry Movement; Psychiatric Disorders; vivorarchives.com Psychiatry. Zwang: Journal of International Association Against Psychiatric Assault, www.freedom-of-thought.de/zwang/ Further Readings Beers, C. 1908. A Mind That Found Itself. New York: Longmans, ᨘ Green, and Co. PSYCHIATRY Bud, S., S. Zinman, and H. T. Harp, eds. 1987. Reaching Across. Riverside: California Network of Mental Health Clients. Psychiatry is the field of medicine that is devoted to Campbell, J. and R. Schraiber, eds. 1989. The Well Being Project: the scientific study of mental illness and the evidence- Mental Health Clients Speak for Themselves. Sacramento: based treatment of mental disorders. A physician must California Network of Mental Health Clients. complete a four-year course of postgraduate training Chamberlin, J. 1978. On Our Own: Patient-Controlled after college and medical school to qualify as a psy- Alternatives of the Mental Health System. New York: chiatrist. Psychiatry is a board-certified medical spe- Hawthorn. Chamberlin, J. 1990. “The Ex-Patients’ Movement: Where We’ve cialty. The concept of mental disorder currently used Been and Where We’re Going.” Journal of Mind and in American psychiatry is defined in the fourth edition Behavior 11(3–4): 323–336. of the Diagnostic and Statistical Manual of Mental 1310———Psychiatry

Disorders (DSM-IV). It states that a mental disorder is a lifetime prevalence at 3.3 percent; obsessive- a clinically significant behavioral or psychological compulsive disorder, at 2.6 percent; antisocial person- syndrome or pattern that occurs in an individual and ality, at 2.6 percent; panic disorder, at 1.6 percent; that is associated with present distress, such as a schizophrenia, at 1.5 percent; and bipolar disorder, at painful symptom, or a disability, such as an impair- about 0.8 percent. A major concern for school-age ment in one or more important areas of functioning or children is attention deficit hyperactivity disorder, with a significantly increased risk of suffering death, which has a prevalence rate of between 3 and 5 per- pain, disability, or an important loss of freedom. The cent. Absences and suspensions from school have been DSM-IV recognizes approximately 386 distinct men- positively affected by the widespread use of psychos- tal disorders, each of which can be characterized by a timulants such as methylphenidate, which are effective set of criteria. Many other conditions may be included in 70 to 80 percent of children with this disorder. in subsequent editions of the DSM as their criteria Historically, modern psychiatry grew out of the become empirically validated. This current classifica- need for those who superintended the large asylums tion of mental disorders can be divided into broad cat- and mental hospitals (alienists) to develop common egories that include dementias, cognitive disorders, principles of care at the beginning of the nineteenth mood disorders, anxiety disorders, dissociative disor- century. First in Europe, then North America, then ders, personality disorders, eating disorders, sexual spreading throughout the world, associations of asy- disorders, sleep disorders, developmental disorders, lum directors began to meet on a regular basis to dis- attention deficit disorders, and substance use disor- cuss management and treatment issues and gradually ders. Physicians who graduate from four-year resi- assumed the name of psychiatrists (from psyche dency training programs in psychiatry develop a high [mind] and iatros [physician]). At the beginning of the interrater reliability in assigning a DSM-IV diagnosis nineteenth century, psychiatry focused primarily on to a given patient and also in assigning a similar score the social and psychological factors that were thought on the Global Assessment of Function Scale (GAF), to underlie mental disorder such as immoral behavior, which provides a standard measure of symptom sever- unrestrained ambition, or political and religious enthu- ity and degree of functional impairment for a given siasm. This trend led to the formulation of moral ther- patient. This scale score, in conjunction with the mul- apy as the fundamental mode of treatment. During the tiaxial diagnostic system, provides a criterion-based second half of the nineteenth century, the pendulum approach to the measurement of progress of any ther- shifted toward biological and brain-related causes of apy chosen for the treatment of the patient. mental disorder, with the disease of neurosyphilis serv- Mental disorders can be severely disabling and can ing as the paradigm mental disorder. The two Nobel be measured in terms of missed employment, accom- prizes specifically given for the treatment of mental modated employment, and full disability; approxi- disorders were awarded for fever therapy for neu- mately 20 percent of the U.S. population will rosyphilis, developed by Wagner von-Jauregg, and psy- experience some form of psychiatric disorder with chosurgery for intractable psychosis, developed by related disability. By far, the disorders that account for Egaz Moniz during this era. the greatest impact on employability and workplace By the early twentieth century, the pendulum had accidents are alcohol abuse and dependence, with a shifted back in the direction of psychological causes lifetime prevalence of 13.8 percent. Phobia, with a of mental disorders with the success of the Austrian lifetime prevalence of 14.3 percent, and generalized psychiatrist Sigmund Freud’s psychoanalytic theories. anxiety disorder, with a lifetime prevalence of 8.5 per- This trend, also attributable to French psychiatrist cent, are also major factors in the workplace. Major Pierre Janet, culminated in the latter half of the twen- depressive disorder and substance abuse and depen- tieth century with an appreciation of the role of psy- dence have a prevalence of about 6.2 percent each. chologically traumatic experiences, stemming from Other mental disorders that significantly account child abuse, adult trauma, and wartime experiences, for psychiatric disability are dysthymic disorder, with as causes of mental disorder and led eventually to the Psychiatry———1311 addition of the category of posttraumatic stress slowing and restriction of affective tone, and treatment disorder to the psychiatric nomenclature. However, resistance led to a new wave of pharmacological inno- with the advent of the psychopharmacology era in the vation. Attempts at molecular engineering, to produce 1950s, as well as the development of chlorpromazine a safer congener of the pharmaceutical clozapine, as the first specifically antipsychotic medication and which had superior efficacy and tolerability in the imipramine as the first specifically antidepressant treatment of schizophrenia, produced a new family of medication, the pendulum began to swing back in the atypical antipsychotics. These newer antipsychotics direction of brain-related research for mental illness. were better tolerated and had less potential of produc- The research field of neuropsychopharmacology, ing tardive dyskinesia. The additional features of which studies the mechanisms of action and brain cir- blocking the 5HT2 serotonin receptor and the hista- cuits that underlie the efficacy of psychopharmaceuti- mine receptors also proved effective in the treatment cals, paralleled the growing field of biological of the negative symptoms of schizophrenia not satis- psychiatry, which studies brain circuitry thought to factorily addressed in earlier generations of antipsy- underlie the major mental disorders of schizophrenia, chotic medications. The negative symptoms of anxiety disorders, and bipolar mood disorder. By the schizophrenia, such as decreased intensity of pleasure 1990s, brain circuit and neural network models of or anhedonia, social isolation, affective flattening, mental disorders were proposed and tested both in poverty of speech and thought, inattentiveness, apathy, animal studies and in human brain neuroimaging. and negative behavior, are very disabling. How posi- The success of the psychopharmacological revolu- tive and negative symptoms link up over the natural tion in psychiatry fueled the trend toward deinstitu- course of schizophrenia and which brain circuits are tionalization, which was further accelerated with the involved in their production are questions currently advent of the community mental health movement in under intensive psychiatric investigation in the area of the 1960s. In 1955, when chlorpromazine was intro- schizophrenia research. duced into the United States (following its introduc- Comparable progress has been made in the psy- tion in Europe), there were approximately half a chopharmacology of mood disorders. Efforts to target million psychiatric inpatients in public and private the serotonin transmitter system in the brain and to facilities. By the mid-1990s, that number had dropped avoid potential overdose lethality from a toxicity point to approximately 20,000. The treatment of three major of view led to the development of a generation of mental disorders—schizophrenia, mood disorders, serotonin reuptake inhibitors (SSRIs) as well as nor- and anxiety disorders—all received a specialized psy- epinephrine reuptake inhibitors (SNRIs), both classes chopharmacology based on drug receptor theories of which showed greater specificity in the enhance- unique to each area. Thus, for example, in the treat- ment of the synaptic concentration of these vital neu- ment of schizophrenia, high-potency phenothiazines romodulators. Despite showing no greater efficacy in such as fluphenazine and haloperidol replaced the first treating the fundamental symptoms of major depres- generation of antipsychotics because they were more sive disorder than that possessed by their predecessors, potent blockers of dopamine. Since antipsychotic the tricyclic antidepressants, the removal of histamine, potency appeared to correlate with the degree the and acetylcholine blocking characteristics liberated pharmaceutical blocked certain dopamine receptors in these newer psychopharmaceuticals from the bother- the brain, it was proposed that an excess of dopamine some side effects of excessive sedation, weight gain, stimulation caused schizophrenia. These receptor and dryness of the mouth. theories have proven to be oversimplifications of the Diminution of these side effects was especially etiology of psychiatric disorders. important in considering the use of different combina- Despite these advances in the psychopharmacolog- tions of these medications, which is often necessary ical area, the drawbacks of side effects such as tardive in severe cases of mental disorder and was virtually dyskinesia (embarrassing involuntary movements of lips impossible with the older medications because of and tongue), the lack of compliance due to cognitive cardiac and other toxicities. Where the dosage of 1312———Psychiatry the primary drug has been optimized without full treatment such as addictive disorders, eating disorders, remission, then the choice of the second or third med- personality disorders, dissociative disorders, develop- ications must be based on the likelihood of enhancing mental disorders, and the group of sexual disorders therapeutic effects while, at the same time, diminish- termed the paraphilias. ing possible side effects and harmful drug-drug inter- In diagnosing and treating the whole range of actions. This problem is especially acute in the mental disorders, psychiatry, more than any other treatment of bipolar mood disorder, where a refractory medical specialty, incurs an obligation to the greater patient may require more than one mood stabilizer, society to protect those who might be injured as a one or more antidepressants, and one or more antipsy- result of a person acting under the influence of a men- chotics. Added to this problem is the issue of comor- tal disorder. This duty takes many forms depending on bidity, both medical and psychiatric. The psychiatrist the mental health laws of the country or state in which needs specialized expertise to effectively treat a the psychiatrist practices. The basic principles include patient who has multiple medical conditions requiring involuntary hospitalization for endangerment to self medical and psychiatric drugs with overlapping side or others, duty to warn a potential victim of a patient’s effect profiles, if a patient has multiple psychiatric homicidal tendency toward him or her, and duty to diagnoses requiring medications with overlapping inform child protective services of probable child side effect profiles, or if the patient is abusing an illicit abuse. On the other side of the issue, the psychiatrist substance while requiring a complex medical and psy- has a duty to protect a person who has allegedly com- chiatric pharmacological regime. Also, if the patient is mitted a crime but who was acting under the influence a member of a vulnerable age group at either end of of a mental disorder. In most criminal codes, this is an the spectrum or belongs to a class of imperiled med- important mitigating factor. Because persons with ical patients—for example, those with cancer, AIDS, mental disorders can be found in all walks of life and or other chronic illness—then the choice of psycho- in all institutional settings, psychiatrists can be found pharmaceutical agents becomes highly constrained by in most large institutional concerns. Some of these many physiological considerations. These problems subfields of psychiatry include forensic psychiatry, or have further reinforced the need for several psychi- psychiatrists who work primarily with the court atric subspecialties such as child and adolescent psy- system; prison psychiatry, an area of growing impor- chiatry, consultation-liaison psychiatry, addictions tance; military psychiatry, psychiatrists who handle psychiatry, neuropsychiatry, and geriatric psychiatry. issues of fitness for service; Veterans Administration Despite these advances in psychopharmacology, psychiatry, psychiatrists who treat not only military psychiatrists are trained in several forms of psy- posttraumatic stress disorder but also the entire spec- chotherapy. Psychotherapy is essential to psychiatry trum of mental disorder; academic psychiatry, those because even those mental disorders that respond rea- charged with training the next generations of psychia- sonably well to psychopharmacological interventions trists; and research psychiatry, psychiatrists who are require supportive psychotherapy as well as medica- funded by government or pharmaceutical companies tion management to sustain patient compliance. No to perform research on mental disorders. psychopharmaceutical is curative in the most com- —Thomas Jobe plete sense, and all mental disorders have a psycho- logical as well as a social aspect. The psychotherapies See also Mental Illness; Models; Psychiatric Disorders. most used by psychiatrists include psychoanalysis, psychodynamic psychotherapy, cognitive therapy, Further Readings cognitive-behavioral therapy, interpersonal psycho- Diagnostic and therapy, integrative psychotherapy, dialectical behav- American Psychiatric Association. 1994. Statistical Manual of Mental Disorders, 4th ed. Washington, ior therapy, psychoeducational therapy, group therapy, DC: American Psychiatric Association. and brief dynamic psychotherapy. Certain mental dis- Carmin, C. N., J. W. Klocek, I. Zivcic, and B. M. Fleming. 1995. orders require mainly psychological and psychosocial “Assessing the Ability of Beck Depression Inventory to Psychology———1313

Predict Panic Disorder and Social Phobia.” Anxiety Disorders deficient physical and mental characteristics. Definitions Practice 2:43–54. of disability have evolved as historical events such as Cook, J. A., H. P. Lefley, S. A. Pickett, and B. J. Cohler. 1995. the World Wars, the eugenics movement, and the dis- “Age and Family Burden among Patients of Offspring with Severe Mental Illness.” American Journal of Orthopsychiatry ability rights movement both shaped and have been 64(3): 435–447. shaped by the involvement of psychology in disability Flaherty, J. A., J. M. Davis, and P. Janicak, eds. 1993. Psychiatry: issues. Contemporary models of working with dis- Diagnosis and Therapy, 2d ed. New York: Appleton- ability are progressing toward a focus on the role of Century-Lange. environment in disability issues and an understanding Frazier, J. A. 1999. “The Person with Mental Retardation.” of disability in terms of “differently abled” rather Pp. 660–671 in The New Harvard Guide to Psychiatry, edited by A. M. Nicoli. Cambridge, MA: Harvard University Press. than as deviant from “normal” human functioning. In Gastfriend, D. R. and J. J. O’Connell. 1998. “Approach to the addition, current psychological practice and research Cocaine or Opiate-Abusing Patient.” Pp. 455–460 in The seek to apply an interdisciplinary approach in work Massachusetts General Hospital Guide to Psychiatry in with persons with disabilities as a means to address Primary Care, edited by T. A. Stern, J. B. Herman, and P. L. disability issues in their entirety. Overall, psychol- Slavin. New York: McGraw-Hill. ogy’s role in disability work continues to generate Goldberg, J. F. and M. Harrow, eds. 1999. Bipolar Disorders: Clinical Course and Outcome. Washington, DC: American new roles and responsibilities for psychologists in the Psychiatric Press. areas of research, practice, and training. Doubtlessly, Janicak, P. G., J. M. Davis, S. H. Preskorn, and F. A. Ayd Jr., eds. psychology will continue to experience the mutual 2001. Principles and Practice of Psychopharmacotherapy, influence of the changing zeitgeist as it relates to 3d ed. Philadelphia: Lippincott Williams & Wilkins. disability issues. Phillips, K. A. and J. G. Gunderson. 1994. “Personality Disorders.” Pp. 701–725 in The American Psychiatric Press Textbook of Psychiatry, 2d ed., edited by R. E. Hales, S. C. EARLY CONTRIBUTIONS Yudofsky, and J. A. Talbott. Washington, DC: American Psychiatric Press. Much of the work that established psychology as a Strauss, G. D. 1995. “The Psychiatric Interview, History and valid science simultaneously produced both theory Mental Status Examination.” Pp. 521–531 in Comprehensive and research methods that have aided in psychology’s Textbook of Psychiatry, 6th ed., edited by H. I. Kaplan and study of disability. In the late 1800s, experimental B. J. Sadock. Baltimore: Lippincott Williams & Wilkins. psychologists Hermann Ebbinghaus, Wilhelm Wundt, Websites and Gustav T. Fechner developed observational meth- ods of measuring psychological processes, including National Institute of Mental Health, www.nimh.nih.gov/health information/schizophreniamenu.cfm rudimentary forms of learning and sensory experi- National Research and Training Center, www.psych.uic.edu/uicnrtc ences. Fechner’s work directly contributed to modern sensory screening. In fact, Fechner’s techniques of testing vision and hearing are the same that are used ᨘ PSYCHOLOGY in contemporary screening tests. Also, the work of Ebbinghaus, Wundt, and Fechner provided a basis for Although psychology did not emerge as a discipline developing measurement techniques that aid in identi- centering on the study of disability, its development as fying intellectual, emotional, and other forms of mental a field dedicated to the understanding of the human disability. mind and behavior has inevitably led to the involve- When psychology surfaced as a new field of study, ment of psychology in work with individuals with evolutionary theory was guiding much of the intellec- disabilities. Initial psychological models of understand- tual thought of the late nineteenth and early twentieth ing disability borrowed from the medical paradigm, centuries. Consequently, evolutionary theory had which emphasizes individual-level factors, pathol- great implications for psychology, which led to a ogy, and abnormality. Thus, persons with disability focus on heredity and genetic superiority. In 1865, have traditionally been defined as those possessing Sir Francis Galton observed that children of geniuses 1314———Psychology were more likely to be geniuses themselves than were effect. Beginning in 1910, these laws were challenged other children and asserted that through controlled by discoveries in genetics. Yet the momentum of the breeding, the human race could develop into one with eugenics movement was not immediately slowed, and superior intelligence. In the early 1900s, the develop- people with disabilities continued to encounter the ment of intelligence tests provided psychologists with effects of the movement for years. an apparently valid method of assessing an individual’s intellectual functioning, thereby creating a means of POSITIVE CONTRIBUTIONS identifying those whose propagation was less desired. OF PSYCHOLOGY It was at this time in the United States that the use of intelligence tests and the eugenics movement in the The early 1900s was not merely a time in which psy- United States were growing. chology provided a scientific basis for discrimination against people with disabilities. Psychological testing PSYCHOLOGICAL TESTING did produce a standardized method with which AND THE EUGENICS MOVEMENT disability could be assessed accurately, one that has remained useful in contemporary psychological The work of Alfred Binet in France established a stan- research and practice. Moreover, the physician Edouard dardized measure of intelligence based on average Séguin, produced work with individuals with develop- mental levels for various age groups. With this mea- mental disabilities and demonstrated the learning sure, a person would receive a score and be placed capacity of these individuals. Thus, he directly con- in a category according to his or her intellectual func- tributed to the development of special education pro- tioning. Henry Goddard further developed these cate- grams and influenced developmental psychologists’ gorizations by labeling each group. He is responsible work with persons with disabilities. for the term moron, which referred to adults who had scored similarly to 8- to 12-year-old children. VOCATIONAL REHABILITATION According to Goddard, this category of individuals, though not the most severely intellectually disabled, In 1912, neuropsychologist Shepard Ivory Franz posed a threat to society as they were more likely to developed a training program for persons with brain survive and procreate than were those of lower intel- damage, conducting some of the first disability work lectual functioning. Goddard proposed control of that provided evidence of reversing the psychological these individuals through strict monitoring and insti- effects of brain damage. Franz’s work marked an tutionalization. important shift toward applied psychological work Goddard continued his assistance of the eugenics with people with disabilities. However, the major movement by developing group testing procedures for impetus for psychology’s involvement in applied the army during World War I. Through such testing, work came at the end of World War I, when veterans men were identified as having high or low intellectual with disabilities acquired during the war returned to functioning and accordingly assigned to “appropriate” the United States. Increased need for rehabilitative positions. Men with lower intellectual functioning services for veterans prompted the 1920 passage of the were systematically assigned to the front lines, as Vocational Rehabilitation Act to “provide for voca- their likely deaths were not considered as great a loss tional rehabilitation of persons disabled in industry or as the death of an individual with higher intellectual otherwise and their return to civil employment.” This functioning. legislation marked the formal beginning of federal sup- Henry Goddard’s interest in eugenics coincided port for vocational rehabilitation in the United States. with the increased institutionalization of people The early to mid-1900s continued to be an era in with a number of physical and mental disabilities. which psychologists’ primary role in disability was In addition, in 1907, sterilization laws, requiring the rehabilitative, and with World War II, the need for sterilization of people with disabilities, were put into vocational rehabilitation increased. In 1943, the Psychology———1315

Vocational Rehabilitation Act was passed and which has influenced clinical and counseling services expanded services to include persons with intellec- provided to people with disability. Specifically, tual and psychiatric disabilities as well as those with persons with psychiatric and emotional disabilities physical and sensory disabilities. This act helped to are considered to possess a deficiency that must be establish additional rehabilitation settings, such as treated, much as a physical illness is treated by a med- schools and mental institutions, in which psycholo- ical doctor. Currently, individual adjustment to a dis- gists provided services to people with disabilities. ability is largely understood as the stages of coming to Over time, many psychologists became involved in terms with an object loss. Because of its focus on the National Society for Crippled Children and individual limitations, critics of the psychoanalytic Adults. Founded in 1919, this broad-based organiza- framework claim that this approach overlooks other tion, now Easter Seals, provided psychologists an important aspects of the person and his or her disabil- arena in which they could discuss disability issues ity, including both abilities and environmental issues. with people with disabilities, family members, and Conversely, psychoanalysis provides helpful insight other professionals. Psychology’s role in disability into a person’s needs and motives, which enables a grew and led to the formation of a special interest greater understanding of the individual experience of group during annual conferences held by the the psychiatric and emotional disability. American Psychological Association (APA) in the Other theories that arose at this time have a similar 1950s. By 1956, a new division of APA was origi- focus on individual characteristics and seek to influ- nated, which focused on rehabilitative work with ence the behavioral and mental processes associated persons with disabilities. Division 22 was originally with disability. Edward Thorndike’s law of effect and named the National Council on the Psychological B. F. Skinner’s operant learning theory provided a the- Aspects of Physical Disability and exists today as oretical basis for applied behavioral analysis. Applied Rehabilitation Psychology. behavioral analysis focuses on the careful use of rewards to develop specific desirable behaviors. It has THEORETICAL DEVELOPMENT been used to help develop many behavioral abilities of people with a variety of disabilities, especially includ- While rehabilitation work was at the center of ing autism and other intellectual and emotional dis- psychologists’ involvement with disability during the abilities. These abilities include speaking, relating to first half of the twentieth century, concurrent develop- others, and reducing self-injurious acts such as head ments in psychological theory provided a framework banging. Applied behavioral analysis has been criti- to guide psychologists’ understandings of individuals cized for its narrow focus on a limited number of with disability. These theories are based in the med- behaviors, its occasional use of punishment as well as ical model, are individually oriented, and often focus rewards, and its inability to develop skills that can be on the individual’s emotional and/or behavioral char- used across many situations. More recently, applied acteristics. Clinical and counseling psychologists have behavioral analysis has been used as part of larger used them extensively in their work with people with interventions to help youth and adults with physical, disabilities, and their influence continues today. learning, and other disabilities accomplish educa- Among the most influential of these theories is tional, employment, and independent living goals. Freud’s psychoanalytic theory, which originated in In mid-century, Albert Ellis’s rational emotive ther- 1910 and was widely known and accepted by the apy and Aaron Beck’s cognitive therapy emerged and 1920s. The theory was developed to explain and aid in have been widely used in clinical and counseling prac- the treatment of neurosis and thus emphasized abnor- tice. These methods aim to challenge unhealthy mality. Psychoanalytic theory has undergone much thoughts and beliefs that are thought to cause emo- criticism and reform since its origination. Psycholo- tional or psychiatric disability. These approaches have gists whose practice is guided by this framework have also been used in work with individuals with other maintained a focus on treatment of abnormalities, forms of disability, particularly when the individual’s 1316———Psychology stance toward his or her disability is a primary issue. In organized such efforts by developing the Division of this case, the psychologist understands that the person’s Community Psychology, Division 27 of the American difficulty with disability stems from an unhealthy man- Psychological Association. This division (now the ner of thinking about his or her disability. According to Society for Community Research and Action), among these approaches, when these beliefs are challenged others, helped legitimize the role of psychologists as and replaced with healthy beliefs, individuals with dis- advocates by establishing a mission that emphasized abilities are more able to think constructively about psychologists’ responsibility for promoting social their impairments. Similar to criticisms faced by psy- justice. choanalytic theory, these approaches have been criti- During the 1970s, the disability rights movement cized for failing to address possible environmental gained momentum and continued seeking legislative issues that may contribute to a person’s disability. protection for the rights of people with disabilities. By the end of the 1950s, psychology’s role in The movement centered on concepts of the inclusion service to individuals with disabilities was established and autonomy of people with disabilities. In 1972, the as one that incorporated testing, counseling and psy- Center for Independent Living originated in Berkeley, chotherapy, and rehabilitative work. As these services California, launching a widespread independent living were established, the political context within the movement. Legislation, such as the Rehabilitation United States was marked by an increasing awareness Act of 1973 and the Education for All Handicapped of and struggle against discrimination and the injus- Children Act in 1975, promoted antidiscrimination tices that it produced. efforts by explicitly specifying the rights of people and students with disabilities, which aided in develop- PSYCHOLOGY AND THE ing future legislation. DISABILITY RIGHTS MOVEMENT Psychologists were able to support the disability rights movement during the 1970s and 1980s by sup- With the Brown v. Board of Education ruling of plying empirical evidence for the necessity of inclu- the U.S. Supreme Court in 1954, separate schools for sion and autonomy as well as develop techniques that African Americans were declared unconstitutional, would facilitate such inclusion. For example, psychol- and the modern civil rights movement began. By ogists produced methods of skill instruction to people 1964, the Civil Rights Act was passed, outlawing dis- with disabilities to aid in community living. They also crimination on the basis of race and consequently pro- created assessment tools to measure individual skill viding a model for disability rights legislation. Four levels for people with disabilities. They conducted years later, the Architectural Barriers Act, requiring research that provided evidence of the benefits to both access to federally funded facilities, became the first individuals and society when persons with disabilities disability rights legislation in the United States. lived in the community versus in institutions. Meanwhile, psychology was evolving with the Furthermore, the 1970s saw some of the first confer- changing political climate. Psychologists from vari- ences on the psychological aspects of disability, ous areas of specialization were becoming involved which aided psychologists in working together to in advocacy efforts for minority groups, which evi- develop and implement beneficial services to people denced a shift from a focus on solely individual char- with disabilities. acteristics to greater attention to environmental The work of psychologists and other disability factors in the understanding of individual experience. right activists in the 1970s laid a foundation for work In addition, there was more interaction between psy- in the 1980s. Much of the legislation that was passed chologists and individuals from other disciplines, during this time built on prior legislation. While psy- further influencing psychological methods of service. chologists continued to be involved in disability Specifically, psychologists began seeing a need to rights, other changes that society experienced in the merge traditional research and practice with newly 1980s further influenced how psychologists were emerging advocacy roles. A number of psychologists involved in disability work. Psychology———1317

CONTEMPORARY PSYCHOLOGICAL developments in practice and theory have guided PRACTICE AND THEORY contemporary methods of counseling and psychother- apy services with people with disabilities. A primary influence on psychology’s role in disability Psychological views of family members of individ- in the 1980s was the progress in medical technology. uals with disabilities have also evolved. The blaming Such progress led to a greater number of individuals models of mid-century, such as Bettelheim’s “refrig- surviving serious head injuries and other medical erator mothers” who purportedly caused autism, have conditions and thus a higher need for psychological been replaced by the more positive views underlying services. Neuropsychologists who had been trained in the work of Tamar Heller, Marty Krauss, and others. the new medical technology became involved in reha- They recognize the substantial care and support bilitation services with these individuals. Today, neu- provided by mothers and other family members to ropsychologists continue to contribute to services for children and adults with intellectual disabilities. They people with disabilities by studying the connections are documenting the stress, coping, satisfaction, and between the brain and behavior for those with dis- fulfillment that can be part of living with and support- abling conditions. Knowledge acquired through these ing family members with disabilities. studies enables other psychologists and individuals From the area of social cognition, Ronnie Janoff- from other disciplines to provide more appropriate Bulman, Shelly Taylor, and others have examined the services to these individuals. important role that assumptions may play in how indi- In addition to the contributions of neuropsycholo- viduals respond to major life changes such as becom- gists, other clinical and counseling psychologists ing disabled. “Positive illusions” can be a coping sought to enhance their methods of serving individu- resource, for example. They also show that major als with disabilities. Specifically, psychologists, such traumatic events can affect views of the world by chal- as Beatrice Wright and Hanoch Livneh, developed lenging long-held assumptions such as “The world is theory and practice that would address specific dis- a benevolent place” and “I am a worthy person.” They ability issues. They drew first on existing individually suggest that highly emotional events are of great focused theories of personality and counseling and importance in shaping the thoughts persons have applied them to their psychological rehabilitation about the world. approach to help persons with disabilities. Building In their now-classic article on the social model of on the ecological tradition of Roger Barker and the disability, Michelle Fine and Adrienne Asch recom- socially relevant social psychology of Kurt Lewin mended questioning the social attitudes and arrange- and Tamara Dembo, Wright later called attention to ments that limit the opportunities of people with the importance of improving societal attitudes toward disabilities. They suggest viewing people with dis- and acknowledging the strengths of people with dis- abilities as a minority group whose disabilities are not abilities. She encouraged rehabilitation professionals a matter of shame but a reality to address and who to recognize that people with disabilities are not pas- can contribute meaningfully and valuably when given sive and should be actively engaged as “comanagers” equal access to education and employment and inde- of their own rehabilitation and affirmed as in charge of pendent living. In that spirit, psychologists have also their lives more generally. These approaches incorpo- continued to work as researchers and advocates. In rated both psychological and social aspects of disabil- 1990, the U.S. Congress passed the Americans with ity. They explained how the interaction of these Disabilities Act (ADA), which provides greater legal components could either promote or inhibit a healthy protection for the civil rights of individuals with dis- adaptation to disability. Carol Gill has advanced a abilities. Psychologists were active in providing testi- positive view of the development of disability identity mony in support of ADA and were influenced by its that describes how individuals with disabilities con- passage. Currently, psychologists have a responsibil- structively come to terms with their limitations and ity to understand legislation protecting the rights of engage society based on their own strengths. These people with disabilities so that psychological services, 1318———Psychosis research, and advocacy respect, examine, and build on practice have been recommended to ensure that the this important legal foundation. perspective of those with disabilities will be consid- ered. This consideration will lead to better informed FUTURE DIRECTIONS psychological practices for individuals with disabili- IN PSYCHOLOGY AND DISABILITY ties and to greater knowledge about the human condi- tion more generally. While psychology has progressed for more than a —Jaime Wernsman, Christopher B. Keys, and century and thereby has become a field more knowl- Scott Feldman edgeable about and responsive to disability issues, criticisms of current psychological practice have See also Professions; Psychiatric Disorders; Psychiatry. pressed the field to further develop its involvement with individuals with disabilities. Specifically, some Further Readings psychologists are challenging traditional definitions Asch, Adrienne. 1984. “The Experience of Disability: A of disability, which have significant implications for Challenge for Psychology.” American Psychologist current psychological practice. 39:529–536. Newer ideas of disability have stemmed from the Fine, Michelle and Adrienne Asch. 1985. “Disability beyond social model of disability, which conceptualizes dis- Stigma: Social Interaction, Discrimination and Activism.” Journal of Social Issues 44:3–21. ability on a dynamic continuum. That is, the degree to Gill, Carol, D. G. Kewman, and R. W. Brannon. 2003. which a person is considered disabled may fluctuate “Transforming Psychological Practice and Society: Policies from day to day or from situation to situation depend- That Reflect the New Paradigm.” American Psychologist ing on the interaction of environmental and/or indi- 58:305–312. vidual factors. For instance, an individual who uses a Livneh, Hannoch and A. Sherwood. 1991. “Application of wheelchair experiences the disability differently Personality Theories and Counseling Strategies to Clients with Physical Disabilities.” Journal of Counseling & depending on whether he or she is attempting to enter Development 69:525–538. a building that is wheelchair accessible or inaccessible Olkin, Rhoda. 1999. “The Personal, Professional and Political When with a wheelchair that can or cannot climb stairs. In Clients Have Disabilities.” Women & Therapy 22:87–103. essence, the lack of fit between the individual’s abili- Pledger, C. 2003. “Discourse on Disability and Rehabilitation ties and the environmental characteristics creates an Issues: Opportunities for Psychology.” American Psychologist inaccessibility that becomes a part of the disability. 58:279–284. Shontz, F. C. and Beatrice A. Wright. 1980. “The Distinctiveness The new social paradigm of disability has begun to of Rehabilitation Psychology.” Professional Psychology: influence psychology in the areas of training, assess- Research & Practice 11:919–924. ment, research, and practice. For example, the nature, extent, and role of social support in the lives of Websites persons with disabilities are emerging as areas of American Psychological Association, http://www.apa.org/pi/cdip research interest with implications for community- based interventions. Furthermore, although there has been an increase in ᨘ PSYCHOSIS studying individuals with disabilities, reform efforts suggest that there is also a need for an inclusion of The term psychosis refers to an array of symptoms persons with disabilities in areas of psychological that relate to disturbances in how the brain processes study that are not particularly directed toward under- perceptions and thoughts. A narrow definition of psy- standing disability issues. Similarly, psychological chosis focuses on a cluster of phenomena known as training programs are being challenged to address dis- positive symptoms. Positive symptoms include hallu- ability issues across the curriculum to enhance dis- cinations and delusions. Hallucinations are said to occur ability competence within the field. These methods of when an individual experiences a sensory impression including disability issues in broader psychological that has no basis in reality. This impression may Public Stripping———1319 involve any of the sensory modalities (i.e., hearing, treatment of psychotic illness, much remains to be sight, smell, taste, touch, or body position in space). learned about the brain mechanisms underlying Delusions are strongly held beliefs that are maintained psychosis so that more complete and predictable despite a lack of supporting evidence. A delusional symptom abatement may occur. person may believe that others are reading their —Thomas A. Simpatico thoughts or plotting against them. Attempts to per- suade the person that these beliefs are untrue gener- See also Psychiatric Disorders; Psychiatry; Psychology. ally fail and may even support the paranoia. In addition to hallucinations and delusions, persons with Further Readings psychotic illness may have disorganized and confused American Psychiatric Association. 1994. Diagnostic and thinking and may exhibit odd or flagrantly bizarre Statistical Manual on Mental Disorders, 4th ed. Washington, speech and behavior. These symptoms generally cause DC: American Psychiatric Press. considerable disability, particularly in interpersonal Andreasen, N. C. 1997. “Linking Mind and Brain in the Study of relationships and work, and in most Western cultures, Mental Illnesses: A Project for a Scientific Psycho- pathology.” Science 275:1586–1593. are associated with high unemployment. Kandel, E. R. 1998. “A New Intellectual Framework for Persons with psychotic illness may also develop Psychiatry.” American Journal of Psychiatry 155:457–469. what are known as negative symptoms that impair “Mental Health: A Report of the Surgeon General.” 1999. motivated and spontaneous behavior. Negative symp- Retrieved May 6, 2005 (www.surgeongeneral.gov/library/ toms can make it difficult to conduct basic activities of mentalhealth/toc.html). The Global Burden daily living such as maintaining personal hygiene or Murray, C. J. L. and A. D. Lopez, eds. 1996. of Disease and Injury Series. Cambridge, MA: Harvard attend to tasks such as grocery shopping and banking. School of Public Health on behalf of the World Health Psychotic symptoms may occur in a wide variety of Organization and the World Bank, Harvard University Press. mental disorders. Although most characteristically associated with schizophrenia, psychotic symptoms can also occur in severe mood disorders (e.g., major ᨘ PUBLIC STRIPPING depression and bipolar disorder), as well as in response to underlying general medical conditions, in Term used by people with disabilities and disability certain substance-induced disorders, and with some of studies scholars to describe a medical teaching and the more severe personality disorders. consultation practice in which disabled people, to Psychosis caused by an underlying medical condition receive medical care, were required to display them- remits once the condition has been identified and treated. selves naked (or nearly so) in front of a well-dressed However, the 1.1 percent of the population suffering group of physicians, students, and allied health pro- from schizophrenia may have psychotic symptoms fessionals. The practice, often referred to as grand throughout their lives. Following a first episode of schiz- rounds by medical practitioners, involves the presen- ophrenia, residual psychotic symptoms, negative symp- tation of a medical case with the actual person present toms, and a variety of cognitive deficits often persist and not as a participant but as an object lesson for the can cause significant psychosocial impairments. One of assembly. The practice varied from institution to insti- the best outcome predictors for first-episode patients tution and from case to case, but the subjects of these with schizophrenia is treatment adherence, and there are demonstrations describe having hospital gowns and compelling data to suggest that earlier, more intense even undergarments taken off so that the professionals interventions produce better long-term outcomes. and students could examine them more freely. Many Psychotic symptoms resulting from a variety of report having to walk naked in front of the physicians disease states seem to share an underlying common and others, having their bodies bent, probed, mechanism, as they tend to respond as a group to inspected, and exposed in mortifying ways. specific pharmacological interventions. Despite the The practice has not been limited to the grand- remarkable improvements that are developing in the rounds setting. For example, psychologist Carol Gill 1320———Public Transportation reports that in 1993, on the popular NBC prime-time ᨘ PUBLIC TRANSPORTATION news magazine NBC Now, a physician pulled up the T-shirt of a 12-year-old girl with cerebral palsy and, As societal divides between domestic and labor without even speaking to her, displayed her scoliotic environments developed in the Industrial Revolution, back to a national television audience. public transportation systems were built to address the Disabled people report feeling objectified by this mobility needs of the labor force. Historically, these experience, in which their perspectives on their impair- systems have been inaccessible to people with dis- ment are completely ignored. But worse, they suggest, abilities, making removal of transportation barriers a is the humiliation: These people, whose physical char- universal disability rights demand. A quick search of acteristics were the occasion for shame and oppres- the Internet reveals more than 30,000 sites contain- sion, were forced to denude themselves and parade ing information about disability and public transit. those very characteristics for which they were singled Canadian and Australian authorities publish informa- out in front of a judgmental group of powerful people tion about how disabled citizens and visitors may who treated them not like a person but like a set of access their transit systems. In Great Britain, DAN symptoms, like an malfunctioning object. (Disabled Action Network) has taken to the streets, By the twenty-first century, the practice has winning a great victory in Nottingham in 1996. In become less common, due perhaps to gradual changes South Korea, activists have documented their ongoing in the culture of medicine as well as to changes in struggle in a documentary film. In all of these cases, medical education, including the advent of advanced the need for transportation has helped to create and information technology. The practice and its impact fuel movements for disability rights, making public on its disabled subjects has been explored extensively transportation the fight that is building the disability by crip artists, writers, and performance artists, rights movement around the world. including Cheryl Marie Wade, Greg Walloch, Mary In the United States, modern public transportation Duffy, Carrie Sandahl, and Eli Clare. systems began to take shape at the dawn of the twen- tieth century. In 1895, New York City replaced its —Jim Ferris steam-powered lines with electric trains, and across See also Stigma; Values. the country, horse-drawn omnibuses and carriages were phased out in favor of electric-powered trolleys Further Readings and streetcars. The first modern city bus, which seated Blumberg, Lisa. [1990] 1994. “Public Stripping.” Pp. 73–77 in 43 passengers and featured driver-operated doors, was The Ragged Edge: The Disability Experience from the Pages manufactured in 1927. In 1933, Boeing unveiled the of the First Fifteen Years of The Disability Rag, edited by Barrett Shaw. Louisville, KY: Advocado. first commercial aircraft, which seated 10 passengers, ———. 1996. “Public Stripping Revisited.” The Disability Rag featured upholstered seats and a water heater, and 17(3): 18–21. traveled at 155 mph. The development of these early Gill, Carol. 1997. “The Last Sisters: Health Issues of Women with public transportation systems unfortunately coincided Disabilities.” Disabled Women’s Network Ontario. Retrieved with a period of disability history known as the July 25, 2004 (http://dawn.thot.net/cgill_pub.html). “eugenics” era, in which disabled people were institu- Gill, C. J., K. L. Kirschner, and J. P. Reis. (1994). “Health Services for Women with Disabilities: Barriers and Portals.” tionalized, seldom seen in public, and sometimes even Pp. 357–366 in Reframing Women’s Health, edited by A. J. prohibited by law from using public streets and facil- Dan. Thousand Oaks, CA: Sage. ities. Invisibility led to exclusion so that early public Snyder, Sharon and David T. Mitchell. 1997. Vital Signs: Crip transportation systems evolved for almost three- Culture Talks Back [videorecording]. Chicago: Brace quarters of a century without considering access for Yourselves Productions. Available from Fanlight Productions people with disabilities. Transportation equipment and (www.fanlight.com). Walloch, Greg. 2001. “Walking Inspired.” In Crip Shots: Six facilities were built without vertical access for people Performative Portraits [videorecording], directed by John R. with mobility impairments and without communication Killacky and Larry Connolly. access for people with visual or hearing impairments. Public Transportation———1321

With the development of the independent living to determine what service to provide to disabled movement in the 1960s, a new way of thinking about riders. The courts concurred, and in the decade preced- people with disabilities and society emerged. ing passage of the ADA, most disabled riders continued Disability rights activists used the “social model of to be relegated to separate and notoriously unreliable disability” to move the locus of “the problem” from paratransit services, where ride denials were common- individual or personal inadequacy (e.g., the inability place and spontaneous travel was prevented by labori- to climb bus stairs) to society’s systematic exclusion ous administrative and scheduling requirements. of people with disabilities through architectural and The demand for accessible public transportation attitudinal barriers. In 1973, MAD (Metropolitan Area was sustained through community activism, protests, Disabled), a group of disabled people in Denver, and court battles for more than 15 years. In Chicago, Colorado, began to protest separate and unreliable disabled riders, many of who were members of service for disabled riders. In 1977, the same year that Chicago ADAPT, sued for access to the city’s buses the first wheelchair lift–equipped fixed-route bus was and rapid rail system under the state human rights law run in San Diego, the Atlantis Community, a client- (Jones v. CTA). Their victory in 1988 was followed by based organization that provided attendant services to a sister lawsuit against Chicago’s commuter rail sys- people moving out of nursing homes, filed a lawsuit tem (Jones v. Metra), which was also settled in favor under Section 504 of the Rehabilitation Act of 1973, of disabled plaintiffs. By the time the Americans with demanding access to Denver’s public bus system. Disabilities Act (ADA) of 1990 was passed, almost When a judge ruled against the Atlantis Community in half of the nation’s bus companies were ordering at 1978, a group of disabled activists and their allies least some lift-equipped buses. closed down Denver’s bus system for two days until With the passage of the ADA in 1990, which estab- they won agreement to equip all new buses with lifts. lished minimum accessibility requirements, many dis- By 1982, disabled riders in Denver enjoyed accessible abled people gained improved access to public mainline bus service. This group formed the nucleus transportation systems. Yet compliance has not been of what would become one of the most contentious of easy, and transit entities had to be taken to court, in some disability rights groups, ADAPT (American Disabled cases repeatedly, to enforce compliance. Others have for Accessible Public Transit). used the “minimum” requirements of the ADA to cir- Throughout the 1980s, the nascent disability rights cumvent accessibility for disabled riders. For example, movement rallied around the demand for access to many public bus companies purchased new inaccessible public transportation. Activists forced public officials buses just before effective dates of transportation regu- to rethink policies that excluded people with disabili- lations, with useful lives of 10 to 12 years; this effec- ties from mainline public transportation systems by tively postponed mainline access for a decade. For debunking inflated cost propaganda and showing that some, who depended on door-to-door transportation, the access to public transportation was essential for full ADA resulted in less transportation when not traveling participation in educational, social, and vocational within the required radius of mainline. activities—integral to connecting with others in the “Full compliance” under the ADA does not always community and moving about freely. translate to equal or full access in practice. For Public transportation authorities through their example, as of 2003, the Chicago Transit Authority national association, APTA (American Public Transit proclaimed that 35 percent of its stations were ADA Association), vigorously opposed the concept of accessible, yet the accessibility is unequally distrib- providing accessible mainline transportation to uted, and some key access compliance continues to be people with disabilities. Portraying the cost of equip- deferred into the future. Over time, a key flaw in early ping buses and trains with lifts and other accessibility disability rights thinking became apparent. Activists features as an economic threat, transit authorities in the 1970s and 1980s envisioned a “common” appealed to the courts for relief from federal regula- disability population and deprioritized the needs of tions in favor of a “local option” that allowed localities people with disabilities who could not be accommodated 1322———Public Transportation by mainline transportation systems. This includes, for unemployed poverty who could work if they could example, people with respiratory impairments who obtain reliable transportation. Yet more than a decade cannot wait for buses in temperature extremes, people after the passage of the ADA, 65 percent remain unem- with chronic fatigue syndrome, and ambulatory dis- ployed, a significant number cannot or do not drive, and abled people who cannot stand for long periods of in many parts of the country, people with disabilities, time. While complementary paratransit requirements unlike their nondisabled counterparts, remain isolated were included in ADA regulations, service areas are and excluded from the mainstream of American life. based on travel patterns of mainline bus users, and the Despite disappointing progress at times, disabled regulations allow transit agencies to charge double the people continue to press for access to all modes of standard bus fare for disabled people who cannot public transportation. When the Supreme Court found access mainline systems, thus effectively pricing that the Rehabilitation Act did not apply to air travel, public transportation out of reach for many people disability advocates organized, and in 1986, Congress with disabilities, who remain the poorest minority passed the Air Carrier Access Act (ACAA), which group in America. requires the implementation of practices and proce- Even where technical compliance on fixed-route dures to ensure access to air travel by people with services has been achieved, disabled riders are often disabilities, but stopped short of mandating the devel- singled out, separated, and expected to participate in opment of accessible aircraft. At the dawn of the separate additional interactions. “Handicap” turn- twenty-first century, disabled people would win stiles, separate paths of travel, special call buttons, accessibility on American cruise lines and then go on additional paperwork, separate boarding and debark- to press for accessibility on foreign-flagged cruise ing processes, and delayed exits from the system all ships in U.S. waters. add up to a multiplicity of separate policies and pro- —Sharon Lamp cedures that stigmatize disabled riders. For many, the promise of the ADA remains out of See also Accessibility; ADAPT; Air Carrier Access; Americans with reach. Just as disabled people were staking a claim Disabilities Act of 1990 (United States); Industrialization. to public transportation, funding for public transit declined and private vehicles became a staple of Further Reading American life. The cost of modifying private vehicles Barnett, Sharon and Richard Scotch. 2001. Disability Protests: for accessibility is often prohibitive; it is not unusual Contentious Politics 1970–1999. Washington, DC: Gallaudet for modifications to double the cost. Most taxi services University Press. also remain inaccessible. Disability rights groups Hamilton-Krieger, Linda. 2003. Backlash against the ADA: Reinterpreting Disability Rights. argued that making buses and trains accessible would Ann Arbor: University of Michigan Press. provide reliable transportation to disabled people Johnson, Mary and Barrett Shaw, eds. 2001. To Ride the Public and reduce the human and social costs of failing to Buses: The Fight That Built a Movement. Louisville, KY: accommodate—the cost of maintaining millions in Advocado. Q

ᨘ QUALITY OF LIFE have grown exponentially ever since. In 2003, the term appeared in more than 6,000 articles referenced on The measurement of quality of life has become central Medline alone. For the most part, health care scholars to the evaluation of health care. This has not always and researchers use the term to refer to outcomes based been the case; until recently, quality of life was on patient self-reports. Historically, this had simply not addressed only through indirect inference from more been an integral part of how health was reported in traditional medical variables. The difficulty of defin- the scientific literature. Undeniably, the patient’s view ing quality of life in a meaningful and operational of his or her own health had played some role in the manner was in part to blame for the apparent unwill- medical consultation, but in terms of the health care ingness of the medical profession, and those allied literature, researchers did not begin collecting and with it, to engage in systematic evaluation of quality reporting such data systematically until the late 1960s. of life in the past. Indeed, the term quality of life is Within the arena of disability research and health inherently ambiguous, as it can refer both to the expe- care it has become increasingly commonplace to dis- rience an individual has of his or her own life and to cuss health-related quality of life. Interest in health- the living conditions in which people find themselves. related quality of life is in keeping with the World Consequently, definitions of the concept have varied Health Organization’s definition of health, which widely, with some writers viewing quality of life as in incorporates autonomy and physical, mental, and some way akin to the Aristotelian notion of the “good social well-being; health is not merely the absence of life” and others defining it in terms of capabilities disease. The literature in this field covers a wide vari- (i.e., having the ability to live a good life in terms of ety of areas, including role functioning (e.g., ability to emotional and physical well-being). Within the arena perform domestic and work tasks), degree of social of health care, the latter view has tended to dominate, and community interaction, psychological well-being, and the term quality of life is typically used to refer to pain, tiredness, and satisfaction with life. To some individuals’ experiences of their own health. extent there is a tendency to equate quality of life with Academic interest in quality of life grew after those factors of the health state that are not encom- World War II, when there was increasing awareness, passed by traditional medical assessments. Such a and recognition, of social inequalities. This provided view can lead to conceptual confusion and perhaps the impetus to social indicators research, and subse- highlights more than anything else the difficulty in quently to research on subjective well-being and qual- providing a simple definition of quality of life. Suffice ity of life. The term quality of life first appeared in the it to say that health status and health-related quality of medical literature in the 1960s, and references to it life have come to mean a combination of subjectively

1323 1324———Quality of Life assessed measures of health, including physical some measures designed specifically to be used in function, social function, emotional or mental state, cost-utility analyses—that is, analyses that attempt to burden of symptoms, and sense of well-being. determine the benefits of an intervention in terms of Most early attempts to develop measures for both length of life gained and quality of life. Perhaps assessing health-related quality of life included the most widely used of these measures is the attempts to measure the specific impacts of disability. EuroQol 5D (EQ-5D), which addresses five dimen- For example, the Katz and Barthel measures were sions of health: mobility, self-care, usual activity, designed to assess activities of daily living in patients pain, and anxiety/depression. Each of these dimen- undergoing rehabilitation programs. Measures of sions is subdivided into three levels according to emotional health, such as the Beck Depression Inventory, whether the dimension represents no problem, a mod- were designed to assess mental health and to give erate problem, or a severe problem. The five dimensions an indication of the severity of depressive symptoms. and the three-level classification system generate 243 However, questionnaires are now often specifically health states, which the instrument’s developers have designed to cover a wide range of areas that may extended to 245 through the addition of death and affect an individual’s quality of life. Two broad cate- unconsciousness. The values attached to these health gories of measures have emerged: those designed to states, which are based on responses from surveys of evaluate health-related quality of life in any group of the general population, are intended to reflect societal patients (indeed, in any population sample) and those views of the severity of each state. The EQ-5D can designed to evaluate health-related quality of life in produce the quality-of-life component for the calcula- specific illness groups. The former group include tion of quality-of-life-adjusted years (QALYs), in measures such as the Sickness Impact Profile and the which quality of life is combined with years of life 36-item Short Form Health Survey (SF-36). These gained as a consequence of an intervention. Costs of instruments cover a wide range of aspects of life that treatment can be linked with the number of QALYs can be adversely affected by ill health, such as gained to give a cost per QALY. physical functioning, emotional well-being, and abil- Clearly, quality of life represents an aspect of ity to undertake work and social activities. Disease- health that is different from that generally measured specific measures, such as the Arthritis Impact Scales using traditional methods of assessment, such as X-rays, Version II (AIMS II), the 39-item Parkinson’s Disease blood tests, and clinical judgment. The latter have Questionnaire, the Endometriosis Health Profile, and tended to dominate within health care and medicine in the 40-item Amyotrophic Lateral Sclerosis Assess- part because they are seen to be relatively objective. ment Questionnaire (ALSAQ-40), are designed for The measurement of quality of life incorporates the use with specific patient groups. They are intended to subjective views of the patient directly and can pro- cover dimensions salient to particular patient groups; vide health care professionals with information that thus, like generic measures, they address areas such as can supplement or, on occasion, contradict traditional physical and emotional functioning, but they also assessments. For example, there is evidence that out- cover issues that may be predominant among patients siders, such as doctors and relatives, view the quality with particular illnesses (e.g., feelings of loss of con- of life of patients with serious disabilities more nega- trol, stigma). tively than do the patients themselves. Also, in some A wide variety of uses have been suggested for instances, clinical assessments remain stable over quality-of-life data, but the most common appli- time and yet patients report a worsening of their cations are the assessment of treatment regimes in health. Such divergences between the perceptions of clinical trials and health surveys. Other applications those in a given health state and the perceptions of out- include population and patient monitoring, screening, side observers highlight the limitations of basing assess- and improvement of doctor-patient communication. ments purely on observers’ assessments. The main One of the most emotive uses of such data, however, purpose of the health care system is to increase the is in the economic evaluation of health care, with well-being of those it treats. This can be achieved only Quebec Model of Disability Creation Process———1325 if patient views are incorporated into treatment evalu- Megone, Christopher. 1990. “The Quality of Life, Starting from ations, thereby ensuring that health and medical care Aristotle.” In Quality of Life: Perspectives and Policies, are fully evidence based. edited by Sally Baldwin, Christine Godfrey, and Carol Propper. London: Routledge. —Crispin Jenkinson Patrick, Donald and Pennifer Erickson. 1993. Health Status and Health Policy: Allocating Resources to Health Care. Oxford, See also Activities of Daily Living (ADLs); Citizenship and Civil UK: Oxford University Press. Rights; Health; Participation. Raisch, D. W. 2000. “Understanding Quality-Adjusted Life Years and Their Application to Pharmoeconomic Research.” Further Readings Annals of Pharmacotherapy 34:906–914. Sprangers, Mirjam A. and Neil K. Aaronson. 1992. “The Role of Albrecht, Gary L. 1994. “Subjective Health Assessment.” In Health Care Providers and Significant Others in Evaluating Measuring Health and Medical Outcomes, edited by Crispin the Quality of Life of Patients with Chronic Disease: A Jenkinson. London: UCL. Review.” Journal of Clinical Epidemiology 45:743–760. Bergner, Marilyn, Ruth Bobbitt, William Carter, and Betty Gilson. Staquet, Maurice J., Ron Hays, and Peter Fayers. 1998. Quality of 1981. “The Sickness Impact Profile: Development and Final Life Assessment in Clinical Trials: Methods and Practice. Revision of a Health Status Measure.” Medical Care 19: Oxford, UK: Oxford University Press. 787–805. Streiner, David L. and Geoffrey R. Norman. 2003. Health Bowling, Anne. 2004. Measuring Health, 3d ed. Maidenhead, Measurement Scales: A Guide to Their Development and UK: Open University Press. Use, 3d ed. Oxford, UK: Oxford University Press. Brown, Roy I., ed. 1997. Quality of Life for People with Suenkeler, Inga H., Margarete Nowak, Björn Misselwitz, Disabilities, 2d ed. Cheltenham, UK: Stanley Thornes. Wolfgang Schreiber, Wolfgang Oertal, and Tobias Back. Fayers, Peter and David Machin. 2000. Quality of Life: Assessment, 2002. “Timecourse of Health-Related Quality of Life as Analysis and Interpretation. Chichester, UK: John Wiley. Determined 3, 6 and 12 Months after Stroke: Relationship to Jenkinson, Crispin, Ray Fitzpatrick, Cathy Brennan, Mark Neurological Deficit, Disability and Depression.” Journal of Bromberg, and Michael Swash. 1999. “Development and Neurology 249:1160–1167. Validation of a Short Measure of Health Status for Individuals Ware, John E. and Cathy Sherbourne. 1992. “The MOS 36-Item with Amyotrophic Lateral Sclerosis/Motor Neurone Disease: Short Form Health Survey 1: Conceptual Framework and The ALSAQ-40.” Journal of Neurology 246(Suppl. 3): 16–21. Item Selection.” Medical Care 30:473–483. Jenkinson, Crispin and Hannah McGee. 1998. Health Status World Health Organization. 1984. “The Constitution of the World Measurement: A Brief but Critical Introduction. Oxford, UK: Health Organisation.” WHO Chronicle 1:13. Radcliffe Medical Press. Jenkinson, Crispin, Viv Peto, Ray Fitzpatrick, Richard Greenhall, and Nigel Hyman. 1995. “Self Reported Functioning and Well Being in Patients with Parkinson’s Disease: ᨘ QUEBEC MODEL OF DISABILITY Comparison of the Short Form Health Survey (SF-36) and the Parkinson’s Disease Questionnaire (PDQ-39).” Age and CREATION PROCESS Ageing 24:505–509. Jones, Georgina, Crispin Jenkinson, and Stephen Kennedy. 2004. The disability creation process (DCP) is a conceptual “Development of the Short Form Endometriosis Health model that enables one to identify and explain the causes Profile Questionnaire: The EHP-5.” Quality of Life Research and consequences of disease, trauma, and disruptions to 13:705–713. the development of a person. It demonstrates that social Leighton Read, J. 1993. “The New Era of Quality of Life participation is not only the result of our identity, our Assessment.” In Quality of Life Assessment: Key Issues in the 1990s, edited by Stuart R. Walker and Rachel M. Rosser. choices, impairments to our organs, and our abilities and Dordrecht, Netherlands: Kluwer Academic. inabilities, but also of characteristics of our living envi- McDowell, Ian and Claire Newell. 1996. Measuring Health: A ronment. For example, an individual’s preparing meals Guide to Rating Scales and Questionnaires, 2d ed. New York: or going to regular school may be influenced by the rein- Oxford University Press. forcement of that person’s capabilities and alteration of Meenan, Robert F., John H. Mason, Jennifer Anderson, Andrew his or her functional limitations through rehabilitation, as Guccione, and Lewis E. Kazis. 1992. “AIMS2: The Content and Properties of a Revised and Expanded Arthritis Impact well as through the reduction of obstacles caused by prej- Measurement Scales Health Status Questionnaire.” Arthritis udice, lack of assistance or resources, and absence of and Rheumatism 35:1–10. accessibility within the home or school. 1326———Quebec Model of Disability Creation Process

Risk Factors

Cause

Personal Factors Environmental Factors

Organic Systems Capabilities

Integrity Impairment Ability Disability Facilitator Obstacle

Interaction

Life Habits

Social Participation Handicap Situation

Figure 1 The Disability Creation Process: The Reference Model

The DCP model was developed based on the International Classification of Functioning, Disability, Quebec government’s disability policy, “On Equal and Health (ICF). Terms,” and on the recommendations of international The DCP model differs from the ICF in its concep- experts, including the World Health Organization, the tualization of human development and adaptation as United Nations, Disabled Peoples’ International, and well as in its view of the disability process as an inter- the Council of Europe, at the Quebec Meeting on active person-environment relationship that creates International Classification of Impairments, Disabili- the outcome of quality of social participation. ties, and Handicaps (ICIDH) in June 1987. By 1989, Although the ICF has also adopted a universal, sys- Patrick Fougeyrollas, a Canadian anthropologist, and temic conceptual framework, the DCP illustrates in a the Quebec Committee on ICIDH published a concep- heuristic and pedagogical way the dynamics of the tual framework illustrating the person-environment interactive process between personal factors (intrin- interactive process of the creation of social partici- sic) and environmental factors (extrinsic) that deter- pation or exclusion. Throughoout the 1990s, they mines the situational result of accomplishment of life improved the DCP framework and classification, habits (daily life activities and social roles) corre- known also as the Quebec model, and urged the WHO sponding to the person’s age, gender, and sociocul- and international partners to revise the ICIDH. From tural identity. The DCP concepts and taxonomies are 1993 to 2001, this innovative conceptualization and mutually exclusive. its scientific applications influenced the revision The DCP model distinguishes two intrinsic dimen- process that culminated in the WHO’s adoption of the sions applicable to every human being: organic systems Queer/Disability Studies———1327 and capabilities (see Figure 1). The “personal factors” ᨘ QUEER/DISABILITY STUDIES category is larger and more inclusive than the “organic systems” and “capabilities” themselves because other As disability studies flourished in the late 1990s, the personal identity variables (age, gender, sociocultural insights that emerged from points where the field identity) must also be considered in the explanation intersected or converged with queer studies proved to of the performance of life habits. The “environmental be particularly productive. By the turn of the century, factors” category is clearly delimited and includes all this convergence had generated a number of signifi- dimensions of the context (social, cultural, political, cant texts, events, communities, and institutions. Eli physical, and so on) in which the person lives. The Clare’s Exile and Pride: Disability, Queerness, and dynamic nature of the interactive process is symbolized Liberation (1999) was a landmark text in this process, by the bold double arrows in Figure 1. The point of cen- as were a number of edited volumes, including tral convergence, symbolized in the figure by the word Raymond Luczak’s Eyes of Desire: A Deaf Gay and interaction, aims at naming the continual relationship Lesbian Reader (1993), Shelley Tremain’s Pushing and influence of the three conceptual dimensions. the Limits: Disabled Dykes Produce Culture (1996), The International Network on the Disability Victoria A. Brownworth and Susan Raffo’s Restricted Creation Process is a Canadian nongovernmental orga- Access: Lesbians on Disability (1999), Robert McRuer nization that promotes the use of the DCP model and and Abby L. Wilkerson’s “Desiring Disability: Queer the development of applications supporting the exer- Theory Meets Disability Studies” (2003) (a special cise of human rights and full citizenship for people issue of the prominent academic journal GLQ: A with functional and organic differences. Journal of Lesbian and Gay Studies), and Bob Guter —Patrick Fougeyrollas and John R. Killacky’s Queer Crips: Disabled Gay Men and Their Stories (2003). An efflorescence of See also International Classification of Functioning, Disability, cultural work in many other locations both preceded and Health (ICF/ICIDH); Models. and accompanied these important volumes, including Further Readings individual memoirs such as Kenny Fries’s Body, Remember (1997) and Daphne Scholinski’s The Last Fougeyrollas, Patrick and Line Beauregard. 2001. “Disability: A Person/Environment Social Creation.” In Handbook of Time I Wore a Dress (1998); performance art by Terry Disability Studies, edited by Gary L. Albrecht, Katherine D. Galloway, Greg Walloch, Julia Trahan, and others; the Seelman, and Michael Bury. Thousand Oaks, CA: Sage. online publication Bent: A Journal of Cripgay Voices; Fougeyrollas, Patrick, René Cloutier, Hélène Bergeron, Jacques and the “Queer Bodies” study and education group, Côté, and Ginette St. Michel. 1999. Quebec Classification which focuses on queerness and disability, based in “Disability Creation Process.” Lac-Saint-Charles, QC: New York City at the Center for Lesbian and Gay International Network on the Disability Creation Process. Office des personnes handicapées du Québec. 1984. On Equal Studies (CLAGS). A group of activists and academics Terms: The Social Integration of Handicapped People, a in the United States initiated a queer disability Listserv Challenge for Everyone. Quebec City: Government of Quebec. on the West Coast in 2000 and, partially through this World Health Organization. 1980. International Classification of network, the first international queer/disability confer- Impairments, Disabilities, and Handicaps: A Manual of ence was organized. That event, which was held at San Classification Relating to the Consequences of Disease. Francisco State University in June 2002, was attended Geneva: World Health Organization. ———. 2001. International Classification of Functioning, by artists, academics, and activists, thereby bringing Disability, and Health. Geneva: World Health Organization. together (in sometimes contentious conversation) the three overlapping communities responsible for gener- Websites ating increased interest in the convergence of queer- Le Réseau international sur le Processus de production du handi- ness and disability. cap (International Network on the Disability Creation This wave of interest in queer/disability studies Process), http//:www.ripph.qc.ca was facilitated both by the perceived connections 1328———Queer/Disability Studies between some lesbian/gay/bisexual/transgendered understand how sexualities (and, indeed, forms of (lgbt) subjectivities and some disabled subjectivities subjectivity and embodiment generally) emerge and by the affinity certain strands of disability studies through the construction, categorization, and dissemi- seemed to have with what had been known since the nation of the “normal” and the “deviant.” Foucault’s early 1990s as “queer theory.” Among the perceived work had affinities with the work of several other gay connections between lgbt and disabled subjectivities and lesbian historians and sociologists, who were was the recognition that socialization for both people mostly working outside the academy in the 1960s and with disabilities and lgbt people often occurred in 1970s. From Mary McIntosh’s groundbreaking “The heterosexual and able-bodied families, isolated from Homosexual Role” (1968) through Jonathan Ned queer and disability communities. Similarly, the Katz’s The Invention of Heterosexuality (1995), these rhetoric of coming out that developed in part to resist scholars examined the ways in which understandings such isolation and that permeated the disability move- and experiences of sexual identity (including hetero- ment by the end of the century had clear, and some- sexuality) are socially constructed, emerging from spe- times acknowledged, antecedents in the gay liberation cific historical and cultural contexts. Since this body of movement, and at its best did not signify discovery of work as a whole focused on embodiment, normality, some deep essential truth but rather coming out to a and deviance as historical entities, other scholars more vibrant movement intent on collectively and often directly concerned with late-twentieth-century queer- quite literally rebuilding the world. Both communities ness and disability were able to access it to critique the have faced ongoing medicalization or pathologization ways in which the institutions and discourses of com- and arguably faced similar new dangers at the turn of pulsory able-bodiedness and compulsory heterosexu- the century, normalization perhaps at the forefront. ality worked in tandem to produce and contain both Throughout the 1990s, lgbt communities debated the able-bodied heterosexuality and queer disabled sub- benefits and liabilities of the normalization process, jects who might confirm (by embodying a “deviance” weighing such factors as increased media visibility that vouchsafed able-bodied heterosexuality’s domi- and tolerance against the potential loss of a flamboy- nance) or trouble (by resistance to this function and ant and critical militancy, the dangers of tokenism, refusal to be kept in place) the larger apparatus. and the ongoing marginalization of members of the Queer theory also developed in relation to a late- community furthest from what Audre Lorde identified 1980s resurgence of radical lgbt activism, in particu- in 1984 as “the mythical norm.” For both lgbt and dis- lar activism that addressed the lack of attention that ability communities, the danger of mutual recoil was the medical establishment, the U.S. government, and perhaps the most problematic aspect of normalization: the media were giving to the AIDS crisis. Although the possibility that acceptance for queers would come some disability activists resisted the incorporation of first to those perceived as least disabled and that HIV/AIDS into the Americans with Disabilities Act acceptance for people with disabilities would come (ADA), there were nonetheless many points of identi- first to those perceived as least queer. fication between AIDS and disability activism. Some The origins of queer theory are multiple. Michel AIDS activist groups, in fact, explicitly acknowledged Foucault is often located as a founding figure of their debt to the disability rights movement, and some sorts, with special emphasis placed on The History of disability rights groups, such as ADAPT, in turn Sexuality, Volume 1 (1978). In that work, Foucault developed strategies and styles that explicitly recalled challenged the notion that sexuality has simply moved or cited those of AIDS activists, especially activists in from a state of repression or secrecy to liberation and the AIDS Coalition to Unleash Power (ACT UP). openness. He showed instead the ways in which sexu- AIDS activism in the late 1980s and early 1990s was ality in the modern era has emerged as a unique appa- flamboyant and confrontational, stopping traffic on ratus, composed of and by an array of discourses and Wall Street, storming the National Institutes of institutional practices; he argued that it has not been Health, staging a “kiss-in” in front of St. Patrick’s repressed but managed. Foucault made it possible to Cathedral in New York City (Cardinal John O’Connor Queer/Disability Studies———1329 had opposed safe-sex education in both private and Queer/disabled individuals and communities have public schools). The demands of activists included worked to secure recognition and respect for the full increased funding for education and research; range of bodies and desires, and have resisted the ways expanded access to treatment, especially for women, in which they have at times been made invisible by people of color, and the poor; and an end to the larger lgbt and disability movements. stigmatization of “AIDS victims,” who themselves —Robert McRuer preferred to be called “people living with HIV/AIDS.” AIDS activists, like other disability activists, were See also Advocacy; Disability Studies; Gender. also media savvy, recognizing the importance of both Further Readings challenging dominant media representations and documenting their own movement. A significant body Anzaldúa, Gloria. 1981. “La Prieta.” In This Bridge Called My of AIDS cultural theory—including Douglas Crimp’s Back: Writings by Radical Women of Color, edited by Cherríe edited volume AIDS: Cultural Analysis/Cultural Moraga and Gloria Anzaldúa. Latham, NY: Kitchen Table: Women of Color Press. Activism (1987), Cindy Patton’s Inventing AIDS Brownworth, Victoria A. 2000. Coming Out of Cancer: Writings (1990), Paula Treichler’s How to Have Theory in an from the Lesbian Cancer Epidemic. Seattle, WA: Seal. Epidemic: Cultural Chronicles of AIDS (1999), and Brownworth, Victoria A. and Susan Raffo, eds. 1999. Restricted Cathy J. Cohen’s The Boundaries of Blackness: AIDS Access: Lesbians on Disability. Seattle, WA: Seal. and the Breakdown of Black Politics (1999)— Clare, Eli. 1999. Exile and Pride: Disability, Queerness, and Liberation. emerged from this period and provided an additional Cambridge, MA: South End. Cohen, Cathy J. 1999. The Boundaries of Blackness: AIDS and the context in which queer/disability studies flourished. Breakdown of Black Politics. Chicago: University of Chicago Finally, queer theory also developed as an extension Press. of feminism and, in some cases, as a partial break from Crimp, Douglas, ed. 1987. AIDS: Cultural Analysis/Cultural feminism. Gayle S. Rubin’s “Thinking Sex: Notes for Activism. Cambridge: MIT Press. a Radical Theory of the Politics of Sexuality” (1984), Foucault, Michel. 1978. The History of Sexuality, vol. 1, An Introduction. specifically responding to what Rubin understood as Translated by Robert Hurley. New York: Random House. the “sex panics” of the 1980s, called for new and Fries, Kenny. 1997. Body, Remember. New York: Plume. autonomous theoretical tools that could account for, Guter, Bob and John R. Killacky, eds. 2003. Queer Crips: and counteract, the sexual stratification and oppression Disabled Gay Men and Their Stories. Binghamton, NY: of our culture; feminism alone, in Rubin’s estimation, Harrington Park. was not adequate to this task. Similarly, writers such as Katz, Jonathan Ned. 1995. The Invention of Heterosexuality. bell hooks, Audre Lorde, Gloria Anzaldúa, and Cherríe New York: Dutton. Lorde, Audre. 1980. The Cancer Journals. Argyle, NY: Spinsters. Moraga critiqued white feminists for their universaliz- ———. 1984. “Age, Race, Class, Sex: Women Redefining ing of all women’s experiences and for their explicit Difference.” Pp. 114–123 in Audre Lorde, Sister Outsider: exclusion of women of color. In calling for a more Essays and Speeches. Freedom, CA: Crossing. fluid, oppositional, and coalitional feminism, these Luczak, Raymond, ed. 1993. Eyes of Desire: A Deaf Gay and women of color either explicitly articulated their Lesbian Reader. Boston: Alyson. Social Problems demands as “queer” (“We are the queer groups,” McIntosh, Mary. 1968. “The Homosexual Role.” 16:183–192. Anzaldúa [1981:209] wrote, “the people that don’t McRuer, Robert. 2002. “Compulsory Able-Bodiedness and belong anywhere....and because we do not fit we are Queer/ Disabled Existence.” Pp. 88–99 in Disability Studies: a threat”) or anticipated similar fluid and oppositional Enabling the Humanities, edited by Sharon L. Snyder, theories that would later emerge under the rubric of Brenda Jo Brueggemann, and Rosemarie Garland Thomson. both queer and disability activism and theory. The call New York: MLA. for autonomous or semiautonomous spaces and the McRuer, Robert and Abby L. Wilkerson, eds. 2003. “Desiring Disability: Queer Theory Meets Disability Studies” (Special simultaneous emphasis on specificity and coalition issue). GLQ: A Journal of Lesbian and Gay Studies 9(1–2). suggests that queer/disabled thought and activism, in Panzarino, Connie. 1994. The Me in the Mirror. Seattle, WA: Seal. particular, inherit these complex feminist histories. Patton, Cindy. 1990. Inventing AIDS. New York: Routledge. 1330———Quota Hiring Policy

Rubin, Gayle S. 1984. “Thinking Sex: Notes for a Radical Theory required that every government contract contain the of the Politics of Sexuality.” In Pleasure and Danger: following pledge: “The Contractor will not discrimi- Exploring Female Sexuality, edited by Carole S. Vance. nate against any employee or applicant for employ- New York: Routledge. Sarton, May. 1988. After the Stroke: A Journal. New York: W. W. ment because of race, creed, color, or national origin. Norton. The Contractor will take affirmative action, to ensure Scholinski, Daphne. 1998. The Last Time I Wore a Dress. that applicants are employed, and that employees are New York: Riverhead. treated during employment, without regard to their Treichler, Paula. 1999. How to Have Theory in an Epidemic: race, creed, color, or national origin.” However, the Cultural Chronicles of AIDS. Durham, NC: Duke University term affirmative action, in this context, meant only Press. Tremain, Shelley, ed. 1996. Pushing the Limits: Disabled Dykes that the organization should not discriminate. Produce Culture. Toronto: Women’s Press. In 1964, the U.S. Congress passed the Civil Rights Wilkerson, Abby L. 1998. Diagnosis/Difference: The Moral Act, Title VII of which outlawed discrimination on the Authority of Medicine. Ithaca, NY: Cornell University Press. basis of race, color, or national origin in programs and ———. 2002. “Disability, Sex Radicalism, and Political Agency.” activities receiving federal assistance. The act was NWSA Journal 14(3): 33–57. amended in 1972 to include in this list religion, sex/gender, and national origin. However, in 1965, President Johnson noted that “fairness” means more ᨘ QUOTA HIRING POLICY than a commitment to impartial treatment. In his commencement speech at Howard University in In many countries of the world, programs have been Washington, D.C., that year, he said: established to seek to create equitable employment opportunities for persons with disabilities. Known You do not take a person who, for years, has been as affirmative action, positive discrimination, employ- hobbled by chains and liberate him, bring him up to ment equity, or quota systems, these programs all have the starting line of a race and then say, “you are free in common the goal of raising the workplace partici- to compete with all the others,” and still justly believe pation rates of disabled people to match those found that you have been completely fair. in the nondisabled general population. In some Thus it is not enough just to open the gates of countries, these programs encompass not just disabled opportunity. All our citizens must have the ability to walk through those gates. people but other groups as well, such as women, ...We seek not...just equality as a right and a visible minorities, and aboriginal peoples. This entry theory but equality as a fact and equality as a result. provides an overview of such programs found in the United States, Canada, France, and Germany. These concepts were embodied in Executive Order 11246, which President Johnson issued in 1965 and UNITED STATES amended in Executive Order 11375 in 1967. These orders required that all federal government contrac- In the United States, affirmative action programs flow tors develop “affirmative action programs” to “pro- from that country’s antidiscrimination legislation and mote the attainment of equal employment objectives.” are not based on the imposition of strict numerical The orders authorized the use of goals but prohibited quotas. The term affirmative action was first used in quotas in regard to race, religion, national origin, the United States in the context of civil rights legisla- color, and sex. In 1971, President Nixon extended tion in the early 1960s. In March 1961, President affirmative action by issuing Revised Order 4, which Kennedy issued Executive Order 10925, which estab- required that each contractor develop “an acceptable lished the President’s Committee on Equal affirmative action program,” including “an analysis of Employment Opportunity. The goal of the committee areas within which the contractor is deficient in the was to end discrimination in employment by the utilization of minority groups and women, and further, government and government contractors. The order goals and timetables to which the contractor’s good Quota Hiring Policy———1331 faith efforts must be directed to correct the deficien- requirement to hire specific numbers of disabled cies.” Goals were not to be quotas; rather, they were to employees. be seen as targets that were reasonably attainable. In 1978, Canada’s federal Parliament passed the In 1973, the U.S. Congress passed the Rehabilitation Canadian Human Rights Act. As originally enacted, Act, in which Section 503 required government con- the law outlawed discrimination in employment and tractors to take affirmative action to employ and pro- in the provision of goods and services on 10 grounds: mote qualified handicapped individuals. The act also race, national or ethnic origin, color, religion, age, prohibited employment discrimination against quali- sex, marital status, family status, disability, and par- fied persons with disabilities. In 1990, the Americans doned conviction. Some years later, sexual orientation with Disabilities Act (ADA) was signed into law. This was added to this list. This law provided that it is legislation outlawed discrimination against persons not a “discriminatory practice” for a person to “carry with disabilities in employment and in the provision of out a special program, plan or arrangement designed goods and services. Provisions of the ADA cover both to prevent disadvantages that are likely to be suffered public and private employers. The law does not specif- by, or eliminate or reduce disadvantages that are ically mandate the creation of affirmative action pro- suffered by groups of individuals...when those dis- grams, but the remedies available for violations of the advantages...would be based on or related to the ADA are the same as those available under Title VII prohibited grounds of discrimination.” Thus, this anti- of the 1964 Civil Rights Act. In cases of systematic dis- discrimination legislation first allowed employers to crimination, the courts may require that an affirmative implement affirmative action passively, with no actual action order be established, requiring the employer to requirement to do so. establish outreach programs to increase the hiring and In 1982, Canada’s Constitution was amended to promotion of disabled people. include the Charter of Rights and Freedoms. Section Affirmative action programs in the United States, 15 of the Charter, the equality rights provision, pro- then, are not based on one law but instead have vided the constitutional underpinnings for the man- evolved over the years through the adoption of a datory employment equity (i.e., affirmative action) number of statutes, coupled with the issuance of vari- programs that were soon to be enacted. ous executive orders. In recent years, however, these Despite the antidiscrimination legislation in place, it programs have become the subject of much contro- became evident that existing laws could not deal with versy in the United States. Critics of affirmative action structural or “systemic” discrimination that certain contend that it is nothing less than discrimination in groups, including persons with disabilities, found in the reverse, and that affirmative action policies amount to Canadian workplace. In 1984, a Royal Commission on de facto quotas. Supporters of affirmative action pro- Equality in Employment, chaired by Madame Justice grams argue that such efforts are necessary to balance Rosalie Abella, issued a report that provided the philo- the history of barriers faced by racial minorities, sophical rationale for affirmative action: women, and persons with disabilities. A key element in the U.S. debate is the absence of an equality rights Sometimes equality means treating people the same provision in the U.S. Constitution that would furnish despite their differences, and sometimes it means a constitutional basis for the implementation of affir- treating them as equals by accommodating their dif- mative action programs. ferences. Formerly, we thought that equality only meant sameness and that treating persons as equals meant CANADA treating everyone the same. We now know that to treat everyone the same may be to offend the notion Canada’s affirmative action program for persons with of equality. disabilities, known as employment equity, also flows from antidiscrimination laws. And, as in the United In 1986, Canada passed the Employment Equity States, Canada does not impose on employers any Act, which mandated the institution of positive policies 1332———Quota Hiring Policy and practices to ensure that persons in designated countries of Europe (France, Germany, Italy, Austria, groups (women, aboriginal peoples, visible minori- Poland) do not flow from antidiscrimination legisla- ties, and persons with disabilities) “achieve a degree tion, but rather are based on strict numerical quotas. of representation in the various positions of employ- Thus, they are fundamentally different from U.S. or ment with the employer that is at least proportionate Canadian affirmative action programs, which rely on to their representation (i) in the workforce or (ii) in targets or objectives rather than on requirements con- those segments of the workforce that are identifiable cerning fixed percentages of the workforce. Moreover, by qualification, eligibility or geography and from the quota programs in Europe cover only disabled which the employer may reasonably be expected to people, not a broader range of “designated groups” draw or promote employees.” The law requires such as racial minorities or women. For the purposes employers to eliminate structural or systemic discrim- of this entry, the systems in place in France and ination and to institute measures that will ensure Germany are described briefly below. that persons who belong to one of the four designated groups subject to the law achieve a degree of repre- France sentation in the various positions of employment with their employers that is proportionate to their represen- In France, a law enacted in 1987 established a quota- tation in the workforce. The law also requires employers levy program. The law stipulates that enterprises with to prepare yearly plans that outline the employment 20 or more workers must have 6 percent of their work- equity goals that they propose to reach as well as forces composed of disabled workers. The legislation timetables for achievement of those goals. The require- also allows for the application of branch or enterprise ments of the Employment Equity Act apply to employ- agreements by which the company agrees to the recruit- ers that have more than 100 employees and are under ment and retention of persons with disabilities. These federal jurisdiction. agreements may cover a single enterprise or an entire It is important to note that the Employment Equity sector of economic activity. Most of these agreements Act does not contain any provision that actually forces include job retention objectives for injured workers. employers to hire anyone. Rather, the law requires that A company that fails to observe its quota obligation employers prepare annual reports and send copies of is charged a levy commensurate to the number of those reports to the Canadian Human Rights Commi- workers by which it falls short of the quota. The levy ssion, the agency responsible for enforcement of the act. averages 2,000 euros (approximately $2,300 U.S.) Although employers are not required to hire anyone, annually for each employee by which the company these reports are public documents, and employers’ falls below the quota. The funds collected by the quota progress is subject to public scrutiny. Moreover, the program are administered by the Association Nationale Canadian Human Rights Commission may conduct de Gestion du Fonds pour l’Insertion Professionelle audits of employers and may issue directions to them. des Personnes Handicapées, or AGEFIPH, which is The affirmative action program in Canada has been made up of representatives from government, trade subject to the same criticisms as such efforts in the unions and employers, and organizations of persons United States. However, because of the existence of with disabilities. the equality provisions of the Canadian Charter of Rights and Freedoms, the Canadian program has not Germany been subject to the same intensity of legal challenges Germany has had a statutory obligation for compa- that have taken place in the United States. nies to hire disabled workers in place since the end of World War I. In 1917, the German Parliament passed QUOTA SYSTEMS a law requiring companies to hire 1 disabled war vet- eran for every 50 employees. This was later broadened In contrast to the programs in place in the United to require companies to fill 1 percent of all jobs with States and Canada, affirmative action efforts in many severely disabled persons, defined as war victims, Quota Hiring Policy———1333 victims of industrial accidents, and other persons employment equity. Finally, it should be noted that the entitled to public pensions and compensation. goal of both quota and affirmative action programs is In 1974, the Severely Disabled Persons Act was the establishment of a workforce that accurately enacted. This legislation provides, with some excep- reflects the participation rates and percentages of dis- tions, that all companies with more than 16 employees abled people in the general population. As such, these must fill at least 6 percent of positions with severely dis- programs must be seen as works in progress. abled persons. This figure represents the proportion of —Carl Raskin severely disabled persons of working age in the German population as a whole. Under the legislation, severely See also Disability Law: Europe; Disability Law: United States; disabled persons are defined as individuals who have Employment; Employment, International; Work. been assessed with as a disability of 50 percent or more from any cause. Companies that do not comply with Further Readings their quota requirements must pay a monthly levy of Commission on Equity in Employment. 1984. Equity in approximately 102 euros, or $120 U.S. Certain posi- Employment: A Royal Commission Report. Ottawa: Supply tions, such as part-time jobs of less than 18 hours and Services Canada. weekly and jobs of less than eight weeks’ duration, are Hecker, Wilhelm. 1997, February 27. “The German System of Employment Quotas and Compensatory Levies.” Speech exempt. It is noteworthy that the compensatory levy is delivered at the International Conference on Policies and payable solely on the basis that disabled persons are not Management of National Rehabilitation Funds, Warsaw. employed in the firm; it is not predicated on whether Retrieved May 11, 2005 (http://www.gladnet.org/index.cfm? disabled persons have actually applied for positions. fuseaction=research.SearchResultsDisplay&FileToReturn= 335.htm). Hodges, Jane and Carl Raskin. 1997. Affirmative Action in the CONCLUSION Employment of Ethnic Minorities and Persons with Disabilities. Geneva: International Labour Office. Despite the existence of quota and affirmative action International Labour Office. 1998a. International Research programs, persons with disabilities continue to Project on Job Retention and Return to Work Strategies for Disabled Workers: Study Report France. experience levels of unemployment far above those Geneva: International Labour Office. experienced by their nondisabled fellow citizens. ———. 1998b. International Research Project on Job Retention Unfortunately, this is a statement that is valid for all and Return to Work Strategies for Disabled Workers: Study countries. Report Germany. Geneva: International Labour Office. Very little evaluative research has been conducted Johnson, Lyndon B. 1965, June. “To Fulfill These Rights.” on this topic, so there is insufficient evidence to allow Commencement address, Howard University, Washington, us to state with any certainty whether the affirmative DC. Retrieved May 12, 2005 (http://www.lbjlib.utexas.edu/ johnson/archives.hom/speeches.hom/650604.asp). action or quota system models are effective vehicles for the integration of persons with disabilities. However, Websites what these programs have done is place the equity issue in the forefront of public awareness and encour- Association Nationale de Gestion du Fonds pour l’Insertion age employers to embark on equity activities they Professionelle des Handicapés (French National Fund for might not otherwise undertake. Certainly in the North the Professional Insertion of Persons with Disabilities), http://www.agefiph.asso.fr American context, it is rare to see a job advertisement Canadian Human Rights Commission, http://www.chrc-ccdp.ca that does not proclaim that the company is an “equal U.S. Equal Employment Opportunity Commission, http://www. opportunity employer” or that it is dedicated to eeoc.gov R

ᨘ RACE AND ETHNICITY of disability studies, scholars point out that “our construction of the normal world is based on a radical Historically, the two social categories of race and repression of disability.” disability have had a contentious relationship. Race Notwithstanding these commonalities, because dis- theorists have sought to distance themselves from ability has historically been associated with “deviance” any association with disability because such associa- and “the lack of intelligence,” race theorists have tions have supported, justified, and enacted centuries attempted to distance race from these attributes. By of oppression, exploitation, and even genocide against doing so, however, race theorists have invoked the bio- bodies marked as racial Others. Even today, the racial- logical definition of disability as an abnormality rooted ized body continues to remain central to the mainte- in the medical language of symptoms and diagnostic nance of a hierarchical social-political world order. categories. It is this definition that disability studies For disabled people of color, the double jeopardy of scholars have critiqued, describing it as a “deficit” model, both race and disability continues to locate them at the and have instead opted for an alternative definition of margins of society. disability as a socially constructed category that has Despite their contentious relationship, the acade- historical, cultural, political, and economic implica- mic areas of critical race theory and disability studies tions for social life. Drawing on this reconceptualiza- draw on similar foundational concepts. Both begin tion of disability, some disability studies’ scholars have with the assumption that race and disability are, in fact, foregrounded the theoretical linkages between disabil- social constructs. For examples, critical race theorists ity and race by arguing that disability is an ideological depict race as a product of “human rather than abstract construction used to justify not only the oppressive forces,” produced through a process often called binary cultural constructions of normal/pathological, “racial fabrication.” Similarly, some disability studies autonomous/dependent, and competent citizen/ward of scholars have described disability as “the attribution the state but also the racial division of labor and other of corporeal deviance—not so much a property of bod- forms of racialized oppression. ies [but rather]...a product of cultural rules about what bodies should be or do.” Both perspectives argue EUGENICS AND THE BIRTH that race and disability are relational concepts. Some OF A RACIST SCIENCE theorists, consequently, have argued that races are constructed relationally against one another rather Theoretical linkages between disability and race than in isolation, such that the privileges that “whites” have historical roots in Enlightenment thought, where (i.e., Nordic Europeans) enjoy are linked to the subor- philosophers such as David Hume and Immanuel Kant dination of people of color. Similarly, in the context sought to distinguish between what they thought of as

1335 1336———Race and Ethnicity

“different breeds of men.” Hume’s naturalism drew migration to the North of newly freed slaves from him to identify what he termed nature’s “original dis- the South. tinction” between “inferior” breeds of men that were Amid these social upheavals, the fear of racial- nonwhite (e.g., the Negro) and an “eminent” breed that ized Others was fueled by associations of race with was white—distinctions that extended to their intellec- genetic degeneration and disease. Medical historians tual and moral aptitudes. Similarly, Kant, in pursuit and anthropologists define degeneration as losing prop- of an objective scientific theory of human differences, erties of the genus. The fear of the loss of this genera- established a meticulous conceptual distinction tive force encouraged typological as well as physical between “race” and “species” and gave credence to and biological speculation and, in doing so, supported the argument of intergenerational permanence of racial unscientific stereotyping of many human differences. traits. Such theorizations of human difference in the As a result, degeneration became a compelling racial late eighteenth century occurred at the same time as metaphor such that certain races were assumed to be slavery and colonialism were flourishing and served as intrinsically degenerate and, as a result, could never be justification for the brutal violence meted out against improved in any way. Because racial biology was nonwhite people who were assumed to be subhuman. a science of boundaries between groups, the threat of Paralleling the social construct of race as a category degeneration was seen to occur when boundaries were of human difference, disability studies scholarship crossed and certain races found themselves “out of reports that during the latter half of the eighteenth place.” This definition was extended to describe the century, “disability” became tied to discourses aimed urban poor, prostitutes, criminals, and even the insane, at remediating, curing, and cataloging variation in who were now also seen as a “race apart.” human bodies. This argument does not imply that By hinting at the imminent possibility of social disabled people did not exist in earlier times. Rather, decay if these degenerate “bodies” were not brought such arguments suggest that while disability in earlier under control, the segregation of race was regarded as a times was seen more as an individual event, in the necessity because maintaining biological distance was late eighteenth century, the disabled person was “seen, critical to preventing degeneracy. This fear of degener- drawn, dissected, legally placed, morally and ethically acy was attributed not only to nonwhite populations determined” (Davis 1995) and, as a result, became asso- (e.g., African Americans, Mexican Americans, Chinese ciated with a genetic entity or group defect, which was, Americans, and Native Americans) but also to lower- in turn, also linked to race, class, and gender differences. class white populations. Fearing that lower-class whites Leading scientists of the late eighteenth and nine- may overpopulate the nation and weaken the superior teenth centuries, such as Carl Linnaeus, Georges Cuvier, stock of the dominant race, eugenicists deemed it nec- Charles Lyell, Charles Darwin, and J. F. Bluemenbach, essary to “purg[e] the blood of the American people of made linkages between human character and human the handicapping and deteriorating influences of defec- anatomy and drew on the racial politics of the time to tive anti-social classes” (Jackson 2000). Scholars have link Africans and other nonwhite races and disability described this eugenic practice as “a white-on-white in demeaning ways. By the beginning of the twentieth racial discourse” that required that whiteness be purged century, the intimate relationship between nonwhite and sterilized until anyone who disrupted the social races and disability was institutionalized by the racist order was eliminated. Like degeneracy, disease was science of eugenics. The term eugenics was coined also something to be feared, especially when it was in 1883 in Britain by Francis Galton to describe a seen as the very embodiment of racial difference. Thus, program of selective breeding. By the late 1890s, for example, the travel memoirs of Mark Twain’s The eugenics as a scientific idea crossed the Atlantic and Innocents Abroad or the New Pilgrim’s Progress have found support in U.S.-educated society frightened by been interpreted as equating the Jew with disease and the radical changes in society brought about by eco- death. In Mark Twain’s travel writing, the Jew was rep- nomic transformations caused by industrialization and resented as illness incarnate. Since Jews were seen as the cultural disruptions caused by new waves of immi- intransigent to the assimilation process because they gration from southern and eastern Europe and the clung to their language, customs, dress, and habits, the Race and Ethnicity———1337

Jewish body was read in generalized terms as theorists run the risk of achieving “‘liberation’ from immutable, and by extension, what was translatable dehumanizing constructs by distancing people of color was his or her immutable relationship to disease, from their association with the bearers of ‘more real’ pathology, and death. Physically, Jewish bodies were (or material) biological incapacities [i.e., disabled described as repellant with “big heads, big mouths, people]” (Mitchell and Snyder 2005). Such a project, everted lips, protruding eyes and bristle eyelashes, large contends disability studies scholarship, fails to recog- ears, crooked feet, hands that hang below their knees nize eugenics as a transnational ideology that used the and big shapeless warts or are otherwise asymmetrical social category of disability to produce constructs such and malproportioned in their limbs” (Twain, quoted in as IQ (intelligent quotients) and practices such as insti- Gilman 1995, p. 107). In other words, the Jew’s disease tutionalization, sterilization, segregated education, and was written on his or her skin. restrictive immigration policies that had detrimental The association of degeneracy and disease with effects not only on persons of color but also on dis- racial difference also translated into an attribution of abled people—all of them grouped under the limited diminished cognitive and rational capacities of non- but all-encompassing heading of “defect.” By regard- white populations. Disability-related labels such as ing the category of “defect” not as a biological given but “feeblemindedness” and “mental illness” were often instead as a social construct invoked so as to regulate, times seen as synonymous with bodies marked oppres- control, and eradicate difference, scholars in both areas sively by race. As a result, the presumption of an in- of race theory and disability studies can more effectively built biological inferiority was seen to be both the cause expose the oppressive violence enacted against humanity and result of degeneracy. The most terrifying aspect that was inspired by the eugenicists’ worldview. of such biological deterministic ascriptions was that In addition, disability studies scholarship has they attributed to nonwhite populations of African described the trans-Atlantic cultural exchange in dis- Americans, Native Americans, Mexican Americans, courses of race in the early twentieth century as the Chinese Americans, and Jewish Americans a shared “Eugenic Atlantic” in an attempt to demonstrate the incapacity to assimilate into dominant society— parallels between race and disability as dehumanizing characteristics that eugenicists described as biological ideological practices that have had devastating mater- rather than cultural. Fearing that such characteristics ial effects on both populations. Some disability studies could be passed down from generation to generation and scholars are critical of how most academic discussions further pose a threat to the dominant white race, “pro- of eugenics dedicated to the engineering of a “healthy” tective” practices such as forced sterilizations, rigid body politic have failed to describe disability as a miscegenation laws, residential segregation in ghettoes, social category that was “the hub that gave the entire barrios, reservations and other state institutions, and [eugenic] edifice its cross-cultural utility.” Thus, the sometimes even genocide (e.g., Holocaust) were brought use of term Eugenic Atlantic is instrumental in des- to bear on nonwhite populations. Thus, disability studies cribing how “the discourse of disability functioned in a scholars have pointed out that in an attempt to regulate diasporic manner” in the transnational phenomenon and control differences seen as disruptive to the “nat- that was eugenics and, as a result, permitted scientists ural” order in society, violent schemes were developed and other professionals both in Europe and North to expunge undesirable biological variations that were America to justify oppressive social, political, cultural, identified as uniquely racial. and economic policies based on the argument that racial Although the above discussion clearly designates difference represented pathological defect. the intricate interconnections between the social con- structs of disability and race, it is this discussion that THE ENFREAKMENT also foregrounds the real tensions between racialized OF POPULAR CULTURE: and disabled bodies. Race theorists have critiqued DISABILITY AS RACIST DISCOURSE eugenics as a racist science that falsely attributes racial differences as examples of biological defect. By doing Disability’s central role as the ideological discourse so, disability studies scholars point out that race deployed so as to legitimate racist oppression in the 1338———Race and Ethnicity early twentieth century via the practices of colonialism the public’s interest in the relation of humans to and slavery was played out on hundreds of stages primates to describe Johnson as the connecting link across the country in the form of freak shows. It was at between human and ape. Foregounding his physical these freak shows that race and disability were brought features that were a result of his microcephaly, together via the creative, dishonest, and exotic maneu- Johnson’s “keeper” is quoted as saying, “The formation verings of opportunistic show managers. Scholarship of the head and face combine that of the native African on the U.S. freak show meticulously records the chi- and of the Orang Outang...he has been examined canery rampant in these shows where disabled people by some of the most scientific men we have, and pro- of color, especially those with mental retardation from nounced by them to be a CONNECTING LINK other parts of the world, were exhibited in the exotic BETWEEN THE WILD NATIVE AFRICAN AND mode as “savages” and “cannibals.” These studies cite BRUTE CREATION.” Thus, one can see how freak several examples of occurrences such as the “Wild shows drew on scientific discourses of disability, the Australian Children,” who were the African Americans racial politics of the era, and fears of a public steeped in Tom and Hettie, severely retarded microcephalic sib- eugenic thought to produce a discourse that justified lings from Circleville, Ohio; the “Wild Men of and thereby propagated race and disability inequality. Borneo,” who were Hiram and Barney Davis, listed in Because persons of color were often seen to domi- court records as “dwarfs” and “imbeciles” who came nate freak shows, it is often assumed that a predomi- from a working-class farming family in Ohio; the “Last nantly white audience was attracted to these shows to Ancient Aztecs of Mexico,” who were El Salvadoran encounter the deviance of the racial freak. This was not peasant children, Maximo and Bartola, bought by a always so. On the other hand, these shows were mostly Spanish trader on account of their “dwarfish and idiotic frequented by populations who were otherwise disen- appearance”; and, perhaps the most famous of all, the franchised in U.S. society and who derived some com- “What is it? or The Man Monkey!” exhibit, who was fort from the sight of Other bodies radically different William Henry Johnson, an African American from from their own. Other scholars point out, however, that New Jersey with microcephaly. encountering the freak show produced not just the Other freak show scholarship defines the public’s repudiation of difference but sometimes a painful encounter with the “freak” as one where the audience identification with the object of difference—the Freak. crosses both corporeal and psychic boundaries to expe- Thus, disability studies reports that when African rience the terror and the excitement of coming face-to- American audiences came face-to-face with “Ota face with examples of “monstrous” humanity while Benga: The Pygmy in the Zoo,” they were faced with being reminded of the “unbearable excess that has to “the monstrosity of U.S. racism embodied in the spec- be shed to confer entry into the realm of normalcy” tacle of a black man in a cage.” It is narratives such as (Adams 2001). If this is the case, it is possible to see these that demonstrate the very painful relationship the significant role that freak shows played in the ide- between race and disability for African Americans, in ological construct of racial discourses when the particular, and people of color, in general. exhibits just described as both disabled and racially marked were exhibited as subhumans, cannibals, and RACIALIZED SUBJECT savages. To give credence to these racist mythologies, AS DISABLED CITIZEN: disability studies scholars describe how show man- THE DISCIPLINARY PRACTICES agers designed publicity materials, stage settings and OF THE NATION-STATE props, and a colorful commentary to advertise and exhibit the exotic aspects of their exhibits while con- Likewise, some critical race theorists have argued tributing to racist knowledge by linking race, disabil- that for a nation to be itself, it has to be perceived as ity, and subhumanness all together. racially and culturally pure. Thus, to come into being, For example, publicity materials for the American the nation-state embarks on an obsessive imperative Museum, responsible for exhibiting Johnson as the of setting up a “stigmata of exteriority and impurity” “What is it? or the Man Monkey!” took advantage of and, in doing so, produces a double-edged racism—a Race and Ethnicity———1339 racism of extermination to purify the social body from racialized citizen-subjects in very intimate ways. At the dangers of inferior races (an exclusive racism) and the height of the eugenics era, the state, drawing on a racism of oppression and exploitation to hierarchize eugenicist fears of the deterioration of the Caucasian and partition society (an internal racism). What these race, sought to control the reproductive capacities studies do not explicitly say is that, once again, the of those it deemed “deviant” and therefore dangerous. category of disability is deployed by the nation-state Thus, in the early twentieth century, a large number to police its borders to keep “unfit” immigrants from of poor white people, along with Native Americans, entering and to control “unfit” citizens who are seen Puerto Ricans, Chicanas, and African Americans, as a threat to the nation-state. were forcibly sterilized in an era that was obsessed For example, the nation-state supported immi- with issues such as “racial hygiene” and the spread of gration laws and regulations that drew on discourses “feeblemindedness.” While overt sterilization of these of disability by requiring checks on the mental com- populations is no longer in vogue today, several schol- petencies of newer immigrants. Thus, scholars ars have argued that new discourses, such as “gene describe how immigrants were faced with batteries of therapy” and “health care rationing,” and new birth tests at Ellis Island, in an effort to screen for “mental control technologies, such as Norplant and Depo- defectives.” Similar practices have been reported in Provera, are imposed mostly on poor women of color Canada, where immigration policies drew on the pro- on welfare who, because of their “dependency,” are fession of psychiatry and invoked concepts such as deemed to be unfit for reproduction. Thus, even lunacy and idiocy to exclude certain categories of though birth control drugs such as Depo-Provera were citizens to maintain a more “sanitized” Canadian banned in 1978 because of the side effects, which society. That these practices are not just historical but included cancer, long-term sterility, and osteoporosis, have contemporary relevance is apparent in Richard to name a few, Depo-Provera reappeared in the late Herrnstein and Charles Murray’s (1994) book, The 1980s and was still being prescribed by doctors to Bell Curve, which recommended that immigrants be poor women of color in cities and to Native American allowed into the country based on an IQ test. Critical women living on reservations. In addition, current of the 1965 Immigration Act that allowed previously scholarship cites an early 1990s report on HIV-positive excluded immigrants into the country to be unified Haitian women held at the naval base at Guantanamo with their families, Herrnstein and Murray argue that Bay being forced to choose between Depo-Provera or immigration should not be based on what they call permanent sterilization while in captivity. nepotism but on competency. Herrnstein and Murray’s But the nation-state not only justifies its control of arguments could be dismissed as the surviving relics its citizens of color by deploying the category of dis- of eugenic practices of the past that are now no longer ability; it also contributes to the construction of dis- in vogue, but recent policies related to immigration abled citizens of color. In both urban and rural United belie that claim. Thus, for example, Proposition 187, States, for example, poverty conditions, lack of access which denies vital and legally guaranteed services to affordable health care, rampant unemployment, and to anyone suspected of being an illegal immigrant, violent neighborhoods contribute to the onset of was passed with overwhelming support in California disability in communities of color living below the and funded by a foundation that backed race-based poverty line. In addition, working-class communities intelligence research. In the most recent election of of color, especially migrant workers—many of whom November 2004, Arizona passed a similar bill that are considered undocumented immigrants—labor in was on the ballot. Thus, once again, it is possible to factories, sweatshops, and nursing homes where wages see that social categories of race and disability are are low and where working conditions can create dis- deployed together to police the boundaries of the abilities. Moreover, in the armed forces, where many nation-state. poor and working-class people of color enlist, deploy- Birth control is another example of how the ment in a war also produces disability. In each of these ideological category of disability is deployed by the contexts, then, there exists a population of disabled nation-state in its attempts to police the bodies of its people of color who were either born with a disability 1340———Race and Ethnicity or acquire a disability during their lifetime and who This overrepresentation of students of color in are therefore forced to negotiate double oppression on special education classes can be accounted for in account of both their race and their disability. This different ways. Recent scholarship has described how experience of double oppression has been especially the predominance of asthma and lead poisoning among well documented in the United Kingdom by disabled poor children contributes to neurological damage that scholars of color. In each of these accounts, what manifests itself as mild disabilities and behavioral is often foregrounded is that their oppression, on the disorders in schools. In terms of race, 36.7 percent of basis of disability, is often compounded by their racial African American children compared to 17 percent of affiliation in areas such as employment, access to cul- Latino children and 6.1 percent white children have turally responsive services, and resources. Sometimes, been identified as experiencing lead poisoning. Such they have even experienced social and cultural margin- statistics point to environmentally induced damage that alization in both their racial/ethnic as well as disability is a direct result of inadequate housing, health care, communities. It is in such contexts that the need to clean air, and other basic necessities. Students of color examine race and disability in dialectic relationship to also get banished to alternative schools (special educa- each other becomes a necessity for survival. tion programs for students identified as “behaviorally disordered” or “emotionally conflicted”) as a result of SPECIAL EDUCATION AS RACIAL GHETTO: the new zero-tolerance policies that were put into place THE DIALECTICS OF RACE after the slew of school shootings by white students AND DISABILITY in middle-class suburbs in the United States. Ironically, once again, students of color, especially African The dialectical relationship between race and disability American and Latino males, were the ones most often is clearly foregrounded in the specific context of edu- disciplined as a result of this law. According to a study cation. Advocates for the inclusion of persons marked undertaken in 2000, when all socioeconomic indicators by race and/or disability in educational contexts have are held constant, African American children were drawn on similar philosophical and constitutional noted as being suspended and expelled at much higher arguments to frame educational policies that support rates than white students within the same schools. In this inclusion (e.g., Brown v. Board of Education [1954] both examples, what becomes apparent is that students and the Education of All Handicapped Children’s Act of color are increasingly “pathologized” in schools—a of 1975, now renamed the Individuals with Disability practice that has become a lucrative business where Educational Act [IDEA] of 1990). More recently, race professionals interact with these children armed with and disability have once again reappeared together on a battery of tests, boot camps, and other behavior the educational stage in recent court cases (e.g., Lee v. management programs that are more profitable to the Macon Board of Education, Alabama), in which cri- professionals than to their clients. tiques have been made regarding the overrepresentation George W. Bush’s plan for education, which claims to of minority students in segregated special education “leave no child behind,” furthers supports the oppressive classes. This, however, is not a recent phenomenon. As relationship between race and disability. One important early as 1968, educational research pointed out that aspect of the Bush Education Plan is Project Sentry, nearly 60 to 80 percent of students labeled mildly whose main goals are to identify, prosecute, punish, and mentally retarded were from “low-status backgrounds” supervise juveniles and to empower teachers to remove and included African American, Latino, and Native violent and disruptive students from the classroom. Such American children. Nearly 20 years later, in the policies draw on philosopher Louis Althusser’s concept Woodstock Report of 1993, F. D. McKenzie, a former of “interpellation”—where interpellation is the process superintendent of schools in the District of Columbia, by which individuals (subjects) are inserted into prac- observed that although African American students tices governed by the rituals of ideological state appara- made up approximately 16 percent of the school tuses (ISAs) such as schools. Thus, it could be argued population, they made up 35 percent of the students that schools use the logic of disability to “interpellate” assigned to special education classes. students of color into “disabled” subject positions that Race, Disability, and Special Education———1341 marginalize them in both educational and social life. In Polakov, Valerie, ed. 2000. The Public Assault on America’s other words, understood in a racialized context, special Children: Poverty, Violence, and Juvenile Injustice. New York: education programs become the most effective way of Teachers College Press. Selden, Steven. 1999. Inheriting Shame: The Story of Eugenics disciplining, regulating, and controlling students of color and Racism in America. New York: Teachers College Press. and teaching them their places within a racial and class Shah, Nayan. 2001. Contagious Divides: Epidemics and Race in San hierarchy. By bringing into line through special educa- Francisco’s Chinatown. Berkeley: University of California Press. tion those who comply with ideological mandates, as Snyder, S. and Mitchell, D. (2005). The Cultural Locations of well as by excluding and containing those who insist on Disability. Chicago: University of Chicago Press. staking their claim for recognition as human beings, Skiba, R. J., R. S. Michael, A. C. Nardo, and R. Peterson. 2000. “The Color of Discipline: Source of Racial and Gender these policies become the most effective way of support- Disproportionality in School Discipline.” Policy Research ing the racialization of disability and the disabilization of Paper SRS1, Indiana Education Policy Institute. Retrieved on race in the ghettoes of special education. Thus, it is in the January 30, 2004 (www.indiana.edu/~safeschl/cod.pdf). interests of theorists working on race and disability to Vernon, Ayesha. 1998. “Multiple Oppression and the Disabled continue to pursue collective deconstruction of social People’s Movement.” Pp. 201–210 in The Disability Studies categories of difference to ensure their collective Reader, edited by T. Shakespeare . New York: Cassell. Watts, Ivan and Nirmala Erevelles. 2004. “These Deadly empowerment. Times: Reconceptualizing School Violence Using Critical —Nirmala Erevelles Race Theory and Disability Studies.” American Educational Research Journal 41(2): 271–299. See also Eugenics; Freak Show; Race, Disability, and Special Woodstock Report. 1993. “Brown v. Board of Education of Topeka Education; Racism; Stigma. 40 Years Later.” Retrieved on January 30, 2004 (www.george town.edu/centers/woodstock/report.htm). Further Readings ᨘ Adams, Rachel. 2001. Sideshow U.S.A.: Freaks and the American RACE, DISABILITY, Cultural Imagination. Chicago: University of Chicago Press. AND SPECIAL EDUCATION Ahmed, W. I. U. 2000. Ethnicity, Disability, and Chronic Illness. Buckingham, UK: Open University Press. The long-standing and problematic relationship between Chamberlain, J. Edward & Sander Gilman, eds. 1985. Degeneration: The Dark Side of Progress. New York: Columbia University Press. race, disability, and special education continues to be Crenshaw, K., N. Gotanda, G. Peller, and K. Thomas. 1995. evident in the disproportionate placement of students Critical Race Theory: The Key Writings That Formed the from racial and ethnic minorities in special education Movement. New York: New Press. programs. Landmark legal cases such as Diana v. Davis, Lennard. 1995. Enforcing Normalcy: Disability, Deafness, State Board of Education (1970) and Larry P. v. Riles and the Body. New York: Verso. (1971–1979) challenged biases inherent in standard- Delgado, Richard and Jan Stefancic, eds. 2000. Critical Race Theory: The Cutting Edge. Philadelphia: Temple University Press. ized testing procedures used to identify students as Harry, Beth. 1992. Cultural Diversity, Families, and the Special eligible for special education. In Diana, a class action Education System: Communication and Empowerment. suit was filed on behalf of nine Latino/Latina children New York: Teachers College Press. who were forced to take an individually administered Gilman, Sander. 1985. Difference and Pathology: Stereotypes of IQ test in English and, as a result, were classified as Sexuality, Race, and Madness. Ithaca, NY: Cornell University EMR (educable mentally retarded). Interestingly, Press. Gould, Stephen Jay. 1981. The Mismeasure of Man. New York: Norton. when retested by a Latino examiner, only one of the Herrnstein, Richard and Charles Murray. 1994. The Bell Curve: nine children was classified as EMR. In a similar suit, Intelligence and Class Structure in American Life. New York: Larry P., the overrepresentation of minority children Free Press. in EMR classes throughout San Francisco, was deter- Jackson, Chuck (2000). “Waste and Whiteness: Zora Neal Hurston mined to be due to educational practices, including and the Politics of Eugenics.” African American Review, 34(4): teacher bias. Both cases illuminated the role of school 639–660. Ordover, Nancy. 2003. American Eugenics: Race, Queer Anatomy, personnel, tests, and testing practices in erroneously and the Science of Nationalism. Minneapolis: University of labeling students of racial and linguistic minorities Minnesota Press. as disabled and placing them in segregated special 1342———Race, Disability, and Special Education education classes. These legal cases demonstrated Retardation (MR), Emotional Disturbance (ED), and how special education, like ability tracking, served as Learning Disability (LD). Thus, “invisible” and a mechanism to resegregate classrooms after the historic more subjective disabilities of a cognitive and/or Brown v. Board of Education (1954) ruled that racially social nature are overly ascribed to racial and lin- segregated schools were unconstitutional. guistic minority students, while less subjective These cases drew attention to the ways that special categories such as blindness or deafness are ascribed education labeling and placement decisions reflected proportionately to all student groups. In other stereotypic beliefs about white intellectual superior- words, overrepresentation is much more pronounced ity. Both Diana and Larry P. called into question the for more subjective special education labels than widespread use of “scientifically” objective measures in diagnoses that are more obvious or objectively to gauge intellectual ability. The intelligence quotient determined. (IQ) score that had once been viewed as measuring The most recent government reports reveal that innate, fixed, unidimensional, and naturally distributed although blacks constitute 14.8 percent of the popula- “ability” along racial and class lines would now be tion, they represent 20.2 percent of all students in spe- cast in a different light. As a result of these cases, it cial education. Black students remain three times as became increasingly clear that evaluation instruments likely to be labeled MR as white students, two times and their use falsely reinforced presumed intellectual as likely to be labeled ED, and almost one and a half hierarchies among racial and ethnic groups. Although times as likely to be LD. In fact, black students remain tests continued to be seen by many as relatively the most overrepresented of all groups in 10 out of neutral and valid, others came to view standardized 13 disability categories nationwide. Among these tests as forms of institutionalized racism, based on categories, MR remains most likely to be assigned cultural and linguistic biases and norms and predi- to black male students. Furthermore, black students cated on the supposedly universal values and experi- who attend school in wealthier communities are more ences of American, white, middle-class citizens. likely to be labeled MR and assigned to segregated Because the special education eligibility process classes than those attending predominantly black, typically begins with teacher referral, the widening low-income schools. Thus, depending on context, racial imbalance between the teaching corps and an both social class and racial biases can increase the ever-more diverse population of public school students risk of minority children being labeled and placed in remains a concern. Recent reports show that 90 percent segregated classrooms. of public school teachers in the United States are The category of LD has also been deeply implicated white, while 40 percent of public school students in in the problem of overrepresentation. The label, which the United States belong to racial/ethnic minorities. emerged during the 1960s, characterized a student Because cultural, social, class, and linguistic biases with LD as having average or above-average intelli- often influence teacher perceptions of students’ ability, gence, specific rather than generalized deficits, and students from racial/linguistic minorities continue to a cultural/familial background unrelated to the acade- risk having their differences pathologized when mea- mic difficulties experienced in school. This category sured against exclusionary and ethnocentric norms and became associated with white students to such a standards. degree that students of similar levels of achievement Despite reforms, a disproportionate number of were given different labels along racial, ethnic, and students from racial, ethnic, and linguistic minorities class lines. In fact, in the first 10 years following continue to be placed in special education classes. the emergence of the category (1963–1973), the vast Since the early 1970s, the U.S. Office of Civil Rights majority of students labeled LD were white middle- (OCR) has reported a persistent problem of minority class boys. Because students were placed in separate children being overrepresented in certain disability classrooms according to their label/disability cate- categories. Specifically, racial disparities are highly gory, special education became as racially segregated pronounced in categories requiring specialized as general education had become with the practice of clinical judgment. These categories include Mental “ability” tracking. Racial Hygiene (Rassenhygiene)———1343

In states with high Latino/Latina or Native American cannot be explained by any one factor. There remain populations, these students are more likely to be over- large variations within district-to-district and state-to- represented in special education. state levels of overrepresentation in special education, Data on Latino/Latina students are complicated by suggesting that the degree of overrepresentation is the fact that they tend to be underidentified for special affected by many variables and contexts. Southern education in elementary school but overidentified in states, for example, continue to have some of the high- high school. Furthermore, students who are English est incidents of disproportionality, regardless of social language learners (ELL) or labeled limited in English class, suggesting that overrepresentation is connected proficiency (LEP) are overrepresented in special edu- to a longer legacy of racial segregation. Moreover, there cation, especially in the upper grades. Once labeled, are substantial within-group differences, in terms of gen- minority students are educated in more restrictive/ der and age of diagnosis. Black females, for example, segregated placements in comparison to their white are less likely to be overidentified than black males but peers. An exception to this trend is the underrepresen- more likely to be labeled than white females and males. tation of Asian American students with disabilities. In addition, when language is taken into consideration, Stereotyped as the “model minority,” Asian students are Latino/Latina students who are learning English are far less likely to be labeled in subjective categories of much more likely to experience overrepresentation. MR, ED, or LD than any other minority group. Further Such within-group differences point to an urgent need research is needed to determine if there are within- for more sophisticated research methodologies to fully group differences, especially among newly arriving understand the relationship of race, disability, and spe- Asian immigrants, or if there are differences in schools cial education. Finally, in this era of high-stakes testing, with and without English as a second language (ESL) we must also consider how many of our current educa- classes. tional practices are serving as tools of social control and Inappropriate classification of racial/ethnic/linguistic exclusion rather than as tools of social transformation minorities for special education leads to lowered and democracy. achievement and poor postschool outcomes. Students in —Beth A. Ferri and David J. Connor segregated special education classrooms are denied access to the general education curriculum and their typ- See also Learning Disability; Race and Ethnicity; Special ically developing peers. Often, the instruction provided Education. in segregated classrooms results in poor transition out- Further Readings comes after the child leaves school. Finally, the child is more likely to experience lowered teacher expectations Gordon, Rebecca, Libero Della Piana, and Terry Keleher. 2000. as a result of being labeled. These factors combine to Facing the Consequences: An Examination of Racial Discrimination in U.S. Public Schools. Retrieved June 11, negatively affect the academic performance of students 2005 (www.arc.org/erase/FTC1intro_ii.html). of color who are labeled disabled, who have higher Losen, Daniel L. and Gary Orfield. 2002. Racial Inequality in rates of suspension, face more severe disciplinary actions, Education. Cambridge, MA: Harvard Education Press. and experience a higher dropout rate compared to their National Research Council. 2002. Minority Students in Special white and/or nondisabled peers. It has been documented and Gifted Education. Washington, DC: National Academy that failure to obtain a high school diploma further Press. U.S. Department of Education, Office of Civil Rights. 2002. OCR restricts occupational opportunities and leads to the Elementary and Secondary School Survey. Retrieved June 11, increased likelihood of poverty. These problems are not 2005 (http://205.207.175.84/ocr2000r/). diminishing but rather are starting earlier with children from economically poor, black, or Latino/Latina families being labeled with the ill-defined “at-risk” category ᨘ RACIAL HYGIENE even before they enter school. (RASSENHYGIENE) Although many have suggested that socioeconomic status accounts for some or even all of the racial dis- The German concept of “racial hygiene” was the parities in special education identification, the problem predominant term for eugenics until the end of the 1344———Racial Hygiene (Rassenhygiene)

Third Reich (1933–1945). It comes from physician racial hygienic thinking into its political program. It Alfred Ploetz (1860–1940), who founded the Deutsche strove for a rapidly growing population that consisted Gesellschaft für Rassenhygiene (German Society for of “racially pure,” “hereditarily healthy,” “Aryan,” and Racial Hygiene) in 1910, the main organization of productive individuals. To achieve this, the carriers of the racial hygiene movement. It committed itself to “foreign” blood should be eradicated. “Foreign” for the the introduction of eugenic measures such as marriage National Socialists included those who carried either bans, forced institutionalization, and sterilization of “hereditarily” or “racially” so-called inferior blood. Many the supposedly hereditarily ill, alcoholics, and criminals. laws were enacted to fulfill these objectives. Already in German racial hygiene, which presents a specifically July 1933, the Gesetz zur Verhütung erbkranken radical variant of eugenics in comparison to interna- Nachwuchses (“Law for the Prevention of Hereditarily tional development, is rooted in racial anthropology. Diseased Offspring”) was passed, which, in contrast This approach influenced German eugenics/racial to the drafted sterilization law of the Preußische hygiene considerably. The French aristocrat Joseph Ministerialverwaltung (Prussian Ministry of Adminis- Arthur de Gobineau (1816–1882) formulated the tration) from 1932, provided for compulsory steriliza- basic ideas of racial anthropology. He started from tion. In November 1933 came the Gesetz gegen the assumption that only white, Aryan, Germanic, or gefährliche Gewohnheitsverbrecher (“Law Against “Nordic” races are culturally constructive; all other Dangerous Habitual Criminals”), which allowed not races are culturally destructive. Racial anthropolo- only the sterilization of repeat offenders but also the gists were convinced that racial differences are objec- castration of sex offenders. In total, about 400,000 tive facts. Skull measurements and the diagnosis of people were forcefully sterilized by 1945, more than in other bodily characteristics established so-called racial any other country in which a sterilization law existed. types, such as the white, black, red, or yellow race. In addition, from the beginning, National Socialist pol- Specific cognitive and spiritual qualities were attributed itics were focused especially against Jews and gypsies. to individual races. Racial anthropologists believed that The first measures taken were the systematic destruc- miscegenation would lead to the inevitable downfall tion of the economic existence of the Jewish population of the Volk. A strongly hierarchically organized social and the racially biological registration of the Sinti model was therefore designed in which the upper strata and Roma (gypsies), who were confined in work camps of society dominated as the noblest race. Selection, the as so-called asocial people and often also sterilized. battle for existence, and measures against degeneration In 1935, various laws followed that forbade mar- promoted the “Nordification” (Aufnordung) of the race. riage between Deutschblütigen (those of “pure” Racial anthropological approaches pushed forward German blood) and Jews, as well as between the nationalist thinking and were connected with an extreme “hereditarily diseased” and “hereditarily healthy.” In anti-Semitism. Main representatives of this extreme Beratungsstellen für Erb- und Rassenfragen (advice line of thinking were engineer Otto Ammon (1842– centers for heredity and race questions), hereditary and 1915) and doctor and philosopher, Ludwig Woltmann racial “inferiors” were identified. In this way, essential (1871–1907). preconditions were put into play, leading to the Racial anthropology gained influence in Germany Holocaust of the Jews and the “euthanasia” action on before and during World War I in nationalist circles and disabled people. also determined the eugenic/racial hygiene movement —Volker van der Locht of the Weimar Republic. With their seizure of power in 1933, the National Socialists fell back on a multi- See also Eugenics; Eugenics: Germany; T4 Program. tude of already existing eugenic, racial hygienic, and racial anthropological proposals for the improve- Further Readings ment of the Volkskörper (“body of the Volk”). In 1931, Benz, Wolfgang, Hermann Graml, and Hermann Weiß, eds. 1998. the Nationalsozialistische Deutsche Arbeiterpartei Enzyklopädie des Nationalsozialismus [Encyclopedia of (NSDAP) (National Socialist German Labor Party) National Socialism], 3d ed. München: Deutscher Taschenbuch became the first party in Germany that incorporated Verlag. Racism———1345

Bock, Gisela. 1986. Zwangssterilisation im Nationalsozialismus. modern variety—operates as a social guarantee that Studien zur Rassenpolitik und Frauenpolitik [Compulsory race purity will be actively policed and maintained. Sterilization in National Socialism: A Study of Racial and Prohibition from reproductive participation (i.e., misce- Women’s Politics]. Opladen: Westdeutscher Verlag. Schmuhl, Hans-Walter. 1992. Rassenhygiene, Nationalsozialismus, genation or sterilization laws) erupts from a belief that Euthanasie. Von der Verhütung zur Vernichtung “lebensunwerten” one group of individuals represents a biological threat Lebens, 1890–1945 [Racial Hygiene, National Socialism, to the integrity of the species. In other words, rather Euthanasia: From the Prevention to the Elimination of “Lives than subordinating an entire group on the basis of faulty Unworthy of Life,” 1890–1945]. Göttingen: Vandenhoeck & beliefs, such as in cases of religious bigotry, modern Ruprecht. racism may be said to operate on the principle of Weingart, Peter, Jürgen Kroll, and Peter Bayertz. 1988. Rasse, Blut und Gene. Geschichte der Eugenik und Rassenhygiene in in-built inferiorities that cannot be overcome. Such Deutschland [Race, Blood, and Genes: The History of Eugenics differences (particularly of a visible, physical nature) and Racial Hygiene in Germany]. Frankfurt/Main: Suhrkamp. become a racist formation when characteristics that Weß, Ludger, ed. 1998. Die Träume der Genetik. Gentechnische might be considered “cultural” become associated with Utopien von sozialem Fortschritt [The Dreams of Genetics: innate (i.e., biological) features. This is the key linkage Genetic Technological Utopias of Social Progress]. Frankfurt between racist and ablest beliefs—group-based inferi- /Main: Mabuse Verlag. ority appears indelible and biologically encoded. Scholars of the history of racism have placed the origins of such practices somewhere in the fourteenth ᨘ RACISM or fifteenth centuries—specifically, in early modern Spain, when religious intolerance gradually trans- Racism remains, in many minds, a term whose formed into forms of body-based intolerance. While ultimate definition is but vaguely understood. religious antipathy for another group expressed itself Identification of absolute instances of racism is still in persecution based on adoption of the wrong faith, contested in scholarship and public discourse much there was little sense that such differences were intrin- in the way that charges of ableism (or disableism, in sic to a population’s bodily constitution. The key some vocabularies) now often prove hotly contested. qualifier here depends on the capacity of a despised However, an examination of the development of population to assimilate (even theoretically) to the racism can also demonstrate that a history of systemic persecuting culture’s status—either through rituals discrimination against people with disabilities devel- of conversion, renunciation, shifts in habits, ways of ops in a somewhat parallel manner. In both cases, communicating, and so on. If members find a way to the discrimination faced by these populations (not to become integrated into the dominant community, then mention those who find themselves marked as racial- a racist system may not be operative. Of course, this ized and disabled) functions in a much more perni- also suggests that modes of assimilation are primarily cious manner than mere active group snobbery. Before cultivated through efforts by members of stigmatized we can parallel these types of oppression, however, a groups to actively participate in the devaluation of working definition of racism should be outlined. their former culture’s values, aesthetics, attitudes, Scholars have suggested that formalized racism can practices, and so forth. In other words, the demands of be recognized whenever the following conditions exist: assimilation require a stigmatized member to recog- (1) publicly sanctioned restrictions on a group’s ability nize his or her prior self as inferior. There is a hierar- to participate in wider social rituals and institu- chy of communities that individuals learn to solidify tions, (2) formalized segregation policies, (3) demotion and substantiate in the process of assimilation. to lower caste/class status of a majority of group Yet, in the case of racism, such an avenue of escape members, (4) active circulation of propaganda that is closed. Members of the stigmatized group find bolster perceptions of inferiority, and (5) the deepening themselves positioned in an impossible coexistence of legal prejudice over time and, perhaps most impor- with the dominant group—specifically, an existence that tant, fears of reproductive contamination. The latter requires their simultaneous sequestration and subordi- point is key because formal racism—at least our own nation. In such a situation, segregated locations—such 1346———Racism as reservations or custodial institutions—become a eighteenth century oversaw the rise of individuated metaphor for the group’s individual as well as collec- human taxonomies. Debates over the relationship of tive predicament. Identity itself becomes fixed, and racial characteristics as environmentally produced ethnic or racial differences cannot be mobilized effects of climate and geography ultimately lost sup- beyond the boundaries of deviancy established by the port in the wake of more biologically determinist enforcers of the norms. No transcendence of one’s models. Thus, human divisions, as expressed in racial circumstances avails itself, and thus cultural dif- Linnaeus’s racial classifications or in the arguments ferences transform into markers for inferiority itself. against polygenesis (the development of separate, dis- Thus, the superiority of one group is based on a sub- tinct bloodlines across racial groups) offered by jective valuing of arbitrary qualities it associates with Blumenbach in 1771 and others later in the century, itself in contradistinction to another (i.e., pigmenta- laid the groundwork for discriminatory beliefs about tion). The presumed characteristics of the marginalized bodies/minds designated as inferior. Consequently, group become synonymous with subjective values of one can witness the parallel cultivation of empirically undesirability. based hierarchies based on racial, ethnic, and func- Just as Carolinus Linnaeus sorted vegetation into tional identifications in this period. In all cases, a particular species groups in 1735, he also classified group’s failure to thrive socially came to be increas- human populations into distinct racial types. While ingly associated with in-built insufficiencies rather this racial taxonomy was not delineated as hierar- than cultural inequalities. chical, the characteristics attributed to each population Even within the most liberal schemes of their supported perceptions of northern European superior- day, those identified as possessing inferior anatomies ity. The practice of drawing distinctions based on bio- were used to justify “progressive” science. For instance, logical characteristics began as early as the fifteenth single bloodline arguments that situated all peoples as century in campaigns such as the Spanish policy of participating in a shared human origin (usually placed requiring blood certificates (or limpieza de sangre), in Africa) positioned racial (i.e., “savage”) and dis- where ethnic belonging became increasingly biolo- abled (i.e., “feebleminded”) populations as “proofs” gized. Such efforts, not coincidentally, paralleled the of common human ancestry with animals. In Descent rise of modern nation-states, where connections began of Man (1871), Darwin, the great champion of shared to be drawn between the attributes of individual species origins, employed racialized and micro- physiology and the nation’s body as a whole. In each cephalic populations as key evidence of primordial of these cases, we witness the formation of invest- “arrested development” in his influential, mid- ments in biological determinism where one’s birthright nineteenth-century theory of evolution. Likewise, his preordains some members to increased social status; cousin, Sir Francis Galton, coined the term eugenics others inordinately comprise the lowest spheres of (Latin for “good seed”) by arguing that breeding prac- social hierarchy—including economic immobility and tices in horticulture and animal husbandry could be lack of access to influential social institutions. Thus, applied to the artificial cultivation of superior races of the Enlightenment arrived replete with ideological human beings. In making such arguments, nineteenth- investments in “proving” that social hierarchies exist century science, particularly after the rediscovery of due to the in-built incapacities of some as opposed to Mendel’s recessive/dominant theory of inheritance, the natural abilities of the fully enfranchised. rejected a previous era’s metaphorical investments in While formalized racism has been reported to blood as a “carrier” of magical properties in favor exist on the basis of group-based limitations that of a more literal hereditary vehicle (i.e., germplasm cannot be overcome, physical, sensory, and intellectual and later genes). differences—often designated today as disabilities— Thus, the late nineteenth and early twentieth also began to serve scientific systems of differentia- centuries increasingly paved the way for science tion. No longer did those labeled “deviant” exist within to influence public policy with respect to restrictive relatively amorphous groupings such as the “mon- legislation toward “flawed” biologies: Jim Crow– strous,” the “crippled,” or as “fools,” but rather the era miscegenation laws, marriage laws, coerced Ramabai, Pandita (1858–1922)———1347 institutionalization, segregation, sterilization, and, Further Readings ultimately, under German National Socialism, state- Back, Les and J. Solomos, eds. 2002. Theories of Race and sponsored murder of disabled, sexually “deviant,” Racism: A Reader. New York: Routledge. ethnic, and racial populations. As historians of racism Bauman, Zygmunt. 2001. Modernity and the Holocaust. have argued, the great irony of such developments New York: Cornell University Press. occurred with respect to “radical” social discourses Foucault, Michel. 2003. Abnormal: Lectures at the Collège de France. New York: Picador. of human equality and formal emancipation efforts to Fredrickson, George. 2000. Racism: A Short History. Princeton, free marginalized populations from various forms of NJ: Princeton University Press. enslavement. Thus, racism, homophobia, sexism, and Gilroy, Paul. 2000. Against Race: Imagining Political Culture across ableism all come to fruition as a “back-door” form of the Color Line. Cambridge, MA: Harvard University Press. discrimination that undermines more egalitarian prin- Goffman, Erving. 1986. Stigma: Notes toward the Management of ciples of “all men being created equal.” The perpetua- Spoiled Identity. New York: Simon & Schuster. Gould, Stephen J. 2002. The Structure of Evolutionary Theory. tion of social inequalities, consequently, functions in Cambridge, MA: Belknap Press. tandem with scientific justifications of biologically Mueller-Hill, Benno. 1988. Murderous Science: Elimination by based insufficiencies. The more we classify, the far- Scientific Selection of Jews, Gypsies, and Others, Germany ther we seem to get from a realization of just societies. 1933–1945. Oxford, UK: Oxford University Press. The history of racism helps to demonstrate—at least Snyder, Sharon and David T. Mitchell. 2005. Cultural Locations to this point—that empirically sanctioned differentia- of Disability. Chicago: University of Chicago Press. tions between individuals and populations inevitably lead to more “modern” forms of inequality (i.e., ᨘ RAMABAI, PANDITA ideologies and practices that sanction socially derived inequalities on the basis of biologically deterministic (1858–1922) criteria). Sanskritist and social reformer Late twentieth-century arguments about the fiction Pandita Ramabai was a Sanskritist who earned the of race have been recently championed as a reversal of honorific “Pandita” from the male scholarly commu- such trends. If genetic variation between human beings nity of her time, an almost unique achievement. She is no greater than 0.01 percent, then investments in travelled to Oxford to study medicine, but her health genes as the basis for population differentiation based deteriorated, and impaired hearing prevented her on innate capacities may finally fail from lack of a true from enrolling at medical college. Instead, Ramabai biological basis. However, given our modern predispo- became an aggressive campaigner for the social uplift sition for investments in differentiation inherited from of women in India and established a home for child the Enlightenment, new efforts to define a distinctive widows at Kedgaon. Ramabai embraced some racial genome seem to renew, rather than undermine, Christian beliefs that she integrated with her personal biologically encoded distinctions across human com- selection from the ocean of Hindu faith and practice, munities. For instance, witness recent efforts to estab- thereby infuriating the orthodox of both religions. lish racial genome banks in order to sponsor a racially She started a mission organization with both Indians specific health care research industry. While science and Westerners working under her leadership, another may have lost some ability to sponsor and steer state scandalous arrangement in her time. A deaf widow policy-making agendas since the heyday of eugenics, who wanted to join the Kedgaon community had diffi- investments in empirical taxonomies of inferiority culty convincing Ramabai but eventually overcame her based on characteristics marked as racial and/or dis- resistance and proved willing and competent at work abled still garner a great deal of sway over aesthetic and worship. Apart from her own substantial writings, and cultural value systems. there is a large hagiographic literature about Pandita —David T. Mitchell Ramabai, in which her significant hearing impairment is almost entirely ignored. See also Eugenics; Race and Ethnicity; Race, Disability, and Special Education; Stigma. —Kumur B. Selim 1348———Rape

Further Readings violence, and rape are used gives us insights into Bapat, Ram. 1995. “Pandita Ramabai: Faith and Reason in the how society views appropriate and inappropriate sex- Shadow of East and West.” Pp. 224–252 in Representing ual behaviors within and across communities. Hinduism, edited by V. Dalmia and H. von Stietencron. No formal definitions were identified in the New Delhi: Sage. literature for the term rape in a disability context. This Dyer, H. S. 1906. Pandita Ramabai: The Story of Her Life. is not to say that the term rape is never seen; rather, it New edition. London: Morgan & Scott. is used as part of a larger discussion of sexual abuse. Müller, F. Max. 1899. Auld Lang Syne: Second Series. My Indian Friends. London: Longmans, Green. Within the disability context, rape is subsumed under the labels of sexual violence and sexual abuse. These definitions are critical for understanding how the inter- ᨘ RAPE section of rape and disability is interpreted across con- texts (e.g., the legal system, the medical system, the Rape is a sensitive and complex topic. A compre- social service system, and within a social network or hensive discussion of rape must take into account the societal context). One must also note that not only are legal, medical, psychological, and emotional issues definitions different, but the nature of the content is that result from this act. When exploring the experi- different as well. For example, a general definition of ence of rape from the perspective of individuals with sexual abuse “includes molestation, incest, rape, pros- disabilities, the complexities increase, and several key titution, or use of a child for pornographic purposes” issues emerge. One major problem is that numerous (Columbia Encyclopedia 2001). This definition pro- definitions permeate the literature for sexual violence, vides a laundry list of inappropriate sexual behaviors sexual abuse, sexual assault, and rape. While there is but does not necessarily leave us with a better under- a sizable body of literature on rape and sexual abuse standing of what sexual abuse means. A more useful in the general population, there is very little literature definition for sexual abuse among individuals with on rape in the disability community. physical disabilities comes from the Center for The following discussion provides the reader with Research on Women with Disabilities. In this defini- a better understanding of the issues surrounding ter- tion, sexual abuse is “being forced, threatened, or minology. In addition, it provides an overview of what deceived into sexual activities ranging from looking or is known about risk factors for rape in the disability touching to intercourse or rape” (Cole 1984; Soeken community, as well as prevalence estimates of rape. et al. 1998; Nosek et al. 2001). When referring to indi- The last section highlights gaps in our current under- viduals with developmental disabilities, sexual abuse standing of rape and disability. Furthermore, it sug- has been defined as “occurring where sexual acts are gests directions for future research efforts. These performed on or with someone who is unwilling or include the benefits of using the social model of dis- unable to consent to those acts” (Brown and Turk ability to understand how social and cultural forces 1992) or “being forced, threatened, or deceived into negatively affect the abilities of disabled survivors of sexual activities ranging from looking or touching to rape to move beyond this experience. intercourse or rape” (Young et al. 1997). “Sexual abuse of a person with learning disabilities can take place THE LANGUAGE OF where that person’s willingness is unacceptably RAPE IN DIFFERENT CONTEXTS exploited” is another definition that warrants inclusion in this discussion. This definition is useful in that When attempting to understand rape, in any context, it it moves away from the complexities of consent. It is important to first identify the words used to repre- acknowledges that while a developmentally disabled sent this act, why they are used, and what they mean. person may willingly engage in a sexual encounter, the This task is important because language has power, act may still be abusive because of the motivation and and the ways in which we use language give insights position of the other person (McCarthy and Thompson into the social and cultural meanings of behavior. 1996). However, from a disability studies perspective, Thus, the way terms such as sexual abuse, sexual it is troubling in that it seemingly negates a disabled Rape———1349 individual’s ability to consent in instances where he or raped, and abused at a rate two times greater than she willingly participates in a sexual encounter that is nondisabled women (Waxman and Wolfe 1999). not abusive. According to the Centers for Disease Control and Studies of sexual violence among nondisabled indi- Prevention (CDC), the reported rates of sexual vio- viduals distinguish between sexual abuse in childhood lence range from 51 to 79 percent against women with and sexual assaults and/or rape in adulthood. In stud- disabilities. When the discussion is limited to cogni- ies of sexual violence among the disabled, this differ- tively impaired individuals, there are wide variations entiation of terms does not occur. Specifically, in a in the reported prevalence rates of sexual abuse. For disability context, sexual abuse is commonly used to example, it has been suggested that women with describe sexual violence rather than rape. One possi- developmental disabilities face a 68 to 83 percent ble explanation for this is the pervasive view of chance of being sexually assaulted in their lifetime, a disabled individuals as childlike and powerless. Since rate that is 50 percent greater than that for nondisabled sexual transgressions against children are defined as women (Sobsey 1994; Waxman and Wolfe 1999). The abuse, the able-bodied population perpetuates this CDC estimates that the reported rates for cogni- usage for adults with disabilities. Another possible tively disabled individuals’ lifetime experience of explanation for this misuse of terminology is that, like sexual violence range from 25 to 67 percent, which is children, individuals with disabilities are viewed as significantly different than the aforementioned percent- asexual and undesirable. ages. These variations result from differences in defin- The legal system offers definitions of two different itions of abuse, differences in populations sampled, and types of rapes. The first type is simple rape, whereby the differences in research methodology (McCarthy and victim and attacker(s) have a prior relationship, there is Thompson 1996). The discrepancies highlight the need a lack of force and resistance, and there is an absence of for more research on this problem. evidence corroborating the victim’s account. The sec- ond type is aggravated rape, in which there is extrinsic FACTORS PUTTING THE violence, multiple assailants, and no prior relationship DISABLED COMMUNITY AT RISK between victim and offender(s) (Estrich 1987). These distinctions become important in discussions of what It is a common misperception that the disabled are not happens within the legal system after a rape occurs. at risk of being raped. However, research has shown Research conducted on rape within the general pop- that disability is not a protective factor against sexual ulation shows that district attorneys are more likely to abuse. Rather, disability has been hypothesized to move forward in the prosecution of an aggravated rape reduce an individual’s emotional and physical than a simple rape. In cases of simple rape, societal atti- defenses, making him or her more vulnerable to abuse tudes about sexuality and promiscuity make successful (Nosek et al. 2001). Researchers have identified sev- prosecution difficult. In a disability context, the prose- eral factors that increase disabled individuals’ vul- cution of simple rape is complicated further because of nerability to sexual abuse, including dependency on the societal misconceptions surrounding the sexuality others for long-term care, life in an institution, denial and desirability of individuals with disabilities. In addi- of human rights that results in perceptions of power- tion, able-bodied persons generally question the ability lessness, the perpetuator’s perception of limited risk of a disabled person to consent to sexual activity and to of discovery, the difficulty some survivors have in act as a competent witness against the attacker. being believed, lack of education regarding appropri- ate and inappropriate sexuality, social isolation and THE STATISTICS OF RAPE increased risk of manipulation, physical helplessness WITHIN THE DISABILITY COMMUNITY and vulnerability in public places, and the emphasis on mainstreaming and integrating disabled individuals The overall prevalence of sexual abuse across the without evaluating their capacity to protect them- spectrum of disabilities is unknown. Research in this selves (Andrews and Veronen 1993; Groce 2003). It area suggests that women with disabilities are assaulted, has also been suggested that economic dependency 1350———Rape greatly increases the risk of abuse among the disabled. significant problems for those with disabilities, Specifically, individuals with disabilities have fewer research that gives a voice to the survivors of rape has opportunities in the labor market than able-bodied not been conducted. The unique challenges that individuals. individuals with disabilities face in bringing charges The overall lack of attention to the issue of abuse against their attackers and accessing supportive services against the disabled by both violence and disability to assist them in moving forward with their lives are researchers has contributed to the invisibility and con- important topics that have been neglected. An integral tinuation of misconceptions regarding disability and piece to gaining understanding is a social model victimization (Curry, Hassouneh-Phillips, and Johnston- analysis of the intersection of disability and rape. A Silverberg 2001). Moreover, while it is increasingly social model analysis lends itself to the identification recognized among professionals that individuals with and acknowledgment of social barriers surrounding cognitive disabilities or mental illnesses are more vul- rape: the barriers that isolate and impoverish disabled nerable to sexual abuse and exploitation than the gen- individuals and put them at risk for rape; the barriers eral population (Mansell, Sobsey, and Moskal 1998; to reporting rape; the barriers to prosecuting perpetra- Tharinger, Horton, and Millea 1990; Furey 1994), tors of rape; the barriers to overcoming the physical, there continues to be limited recognition that the phys- emotional, and psychological effects of rape; and ically disabled are also at significant risk for being the barriers to overcoming the shame and stigma that raped. For example, it has been suggested that the ten- having been raped brings. dency for women with physical disabilities to be deval- Proponents of the social model of disability view ued by society is one reason that this group is not disablement as the consequence of society’s failure included in research on sexual abuse (Coleman 1997, to recognize and account for the differing needs of in Curry et al. 2001). This assertion is indirectly sup- disabled people and to eliminate the barriers they ported by the fact that as recently as 2001, fewer than encounter (Oliver 1996). One could also argue that five studies examined the sexual abuse of individuals society has failed to recognize that disabled individu- with physical disabilities (Curry et al. 2001). als have significantly different risk factors for being Discussion regarding sexual abuse and the cogni- raped. In addition, legal and social service systems are tively disabled focuses heavily on cognitively impaired nearly impossible to negotiate for individuals with dis- individuals’ ability to give consent and their competence abilities because they have different needs and abilities to give evidence against their attackers. However, sev- that these systems do not recognize. Therefore, a social eral dialogues are equally important and yet virtually model analysis challenges societal misconceptions absent from the literature. The first emerges from the about the disabled and calls for a better understanding recognition that discussions of disability and rape are of the rape experience within the disability community. specific to individuals within a disability category (e.g., The current lack of knowledge on this experience within physical or cognitive). There is little, if any, research the disability community denies rape survivors an that explores sexual abuse across disability types. This opportunity to heal on multiple levels. First, it denies points to the need to explore what, if any, differences in them the opportunity to find meaning through talking service needs exist between physically disabled and about their experiences. Second, it prevents them from cognitively disabled rape survivors. The second area accessing much-needed legal, medical, and social that must be addressed is the identification of the emo- services following rape. Third, it prevents service tional and psychological service needs of cognitively providers from fully recognizing and understanding impaired individuals in the aftermath of rape. the barriers faced by this community in dealing with the experience of rape. Finally, this lack of understand- GIVING VOICE TO RAPE SURVIVORS ing perpetuates the isolation of this already marginal- ized group of individuals. The literature proves that we do not currently have Another crucial component of this analysis is a full understanding of disability and rape. Although the lived body experience of rape and disability. sexual abuse and rape are increasingly recognized as Throughout their lives, disabled people are routinely Rau, Fedor Andreevich (1868–1957)———1351 dehumanized by the medical system under the guise Curry, M. A., D. Hassouneh-Phillips, and A. Johnston-Silverberg. of correcting medical conditions and minimizing impair- 2001. “Abuse of Women with Disabilities: An Ecological ments. As part of this process, disabled individuals are Model and Review.” Violence Against Women 7(1): 60–79. Estrich, S. 1987. Real Rape: How the Legal System Victimizes forced to believe that they are not the experts on their Women Who Say No. Cambridge, MA: Harvard University Press. bodies. Rather, it is the doctors and therapists who are Furey, E. M. 1994. “Sexual Abuse of Adults with Mental the experts. This psychological framework, which Retardation: Who and Where.” Mental Retardation 32:173–180. leads many to try to escape their “deficient” bodies for Groce, N. E. 2003. “HIV/AIDS and People with Disability.” The normal ones, has significant consequences for the Lancet 361:1401–1402. healing processes of disabled rape survivors. The real- Mansell, S., D. Sobsey, and R. Moskal. 1998. “Clinical Findings among Sexually Abused Children with and without Develop- ity of this statement is reinforced in the narrative of a mental Disabilities.” Mental Retardation 36:1222. disabled rape survivor. In the process of diagnosing McCarthy, M. and D. Thompson. 1996. “Sexual Abuse by Design: her disability, she describes how she was accused of An Examination of the Issues in Learning Disability Services.” fabricating and exaggerating symptoms as a means of Disability & Society 11(2): 205–217. getting attention. The lack of support from family and Nosek, M. A., C. Clubb Foley, R. B. Hughes, and C. A. Howland. the “experts” led her to question her authority over 2001. “Vulnerabilities for Abuse among Women with Disabili- ties.” Sexuality and Disability 19(3): 177–189. her body. Subsequently, while in college, she was Oliver, M. 1996. Understanding Disability: From Theory to raped. This experience, coupled with her lived body Practice. New York: St. Martin’s. experience of disability, led to increased feelings of Sobsey, D. 1994. Violence and Abuse in the Lives of People with lack of authority over her body, which drove her to Disabilities. Baltimore: Brookes. “escape” through drug use and other self-destructive Soeken, K., J. McFarlane, B. Parker, and J. C. Campbell. 1998. behavior. “The Abuse Assessment Screen: A Clinical Instrument to Measure Frequency, Severity, and Perpetuator of Abuse against To truly understand the intersection of rape and Women.” Pp. 195–203 in Beyond Diagnosis: Changing the disability, researchers must move beyond traditional Health Care Response to Battered Women and Their Children, research strategies that rely on surveys of service edited by J. C. Campbell. Thousand Oaks, CA: Sage. providers and family members of rape survivors. Tharinger, D., C. B. Horton, and S. Millea. 1990. “Sexual Specifically, researchers must engage in qualitative Abuse and Exploitation of Children and Adults with Mental participatory research strategies that incorporate the Retardation and Other Handicaps.” Child Abuse and Neglect 14:301–312. experiences of disabled rape survivors in all aspects of Waxman, Fiduccia B. and L. R. Wolfe. 1999. Violence against the research design. It is only through the inclusion of Disabled Women. Washington, DC: Center for Women Policy those who have experienced both disability and rape Studies. that we can truly understand the experience. Young, M., M. A. Nosek, D. Howlund, G. Chanpong, and D. H. Rintala. 1997. “Prevalence of Abuse of Women with Physical —Amy Paul Ward Disabilities.” Archives of Physical Medicine and Rehabilitation 78:S34–S38. See also Child Abuse; Empowerment and Emancipation; Social Model; Violence.

Further Readings ᨘ RAU, FEDOR ANDREEVICH Andrews, A. B. and L. J. Veronen. 1993. “Sexual Assault and (1868–1957) People with Disabilities.” Journal of Social Work and Human Sexuality 8(2): 137–159. Director of the Arnoldo-Tretiakov Brown, H. and V. Turk. 1992. “Defining Sexual Abuse as It Affects School for the Deaf in Moscow Adults with Learning Disabilities.” Mental Handicap 20:44–54. Cole, S. S. 1984. “Facing the Challenges of Sexual Abuse in Persons Fedor A. Rau was director of the Arnoldo-Tretiakov with Disabilities.” Sexuality and Disability 7(3/4): 71–88. School for the Deaf in Moscow. He was also the Coleman, L. 1997. “Stigma: An Enigma Demystified.” Pp. 216– founder of special education training at the university 231 in The Disability Studies Reader, edited by L. Davis. New York: Routledge. level and organized the first Russian congress on deaf Columbia Encyclopedia. 2001. 6th ed. Retrieved June 14, 2005 education in 1910. From 1922 to 1948, he was the (www.bartleby.com/65). head of the faculty of deaf education in the Moscow 1352———Rau, Fedor Fedorovich (1908–1977)

State Pedagogical University and the author of many Brigham), Ray supported the early optimism about the textbooks and manuals for deaf schools, including the curability of insanity if individuals were housed in spe- ABC Book for Deaf Children (1903). cialized hospitals carefully constructed along specific architectural plans, supported with generous funding —Anna Komarova and Victor Palenny by the state, supervised by a new class of medical pro- See also Natalja Aleksandrovna Rau. fessionals with expertise in mental illness, and handled according to the latest principles of “moral treatment.” For 20 years, Ray served as the superintendent of the ᨘ RAU, FEDOR FEDOROVICH Butler Asylum in Providence, Rhode Island. In 1844, he was one of 13 asylum superintendents to gather in (1908–1977) Philadelphia and found the Association of Medical Speech therapy specialist Superintendents of American Institutions for the Insane (now the American Psychiatric Association). Fedor F. Rau was a professor at the Institute of Defec- Ray published numerous articles throughout his career tology (now the Institute of Special Education) and a that were intended for both an audience of asylum speech therapy specialist. Together with N. F. Slezina, he administrators as well as a more general readership of developed the “concentric” method of speech therapy. policy makers and influential philanthropists. Ray, —Anna Komarova and Victor Palenny who had a special interest and wrote extensively on the need for the reform of criminal insanity laws, is some- times referred to as the “father of forensic psychiatry.” ᨘ RAU, NATALIA —Philip M. Ferguson ALEKSANDROVNA (1870–1947) Founder of a kindergarten for deaf children See also Institutionalization and Segregation; Mental Illness; Psychiatry. Natalia Rau, Fedor Andreevich Rau’s wife, founded the first kindergarten for deaf children in Europe in Further Readings 1900. After 1917, she worked as an inspector for a Grob, Gerald N. 1994. The Mad among Us: A History of the Care deaf children’s kindergarten. In 1922, she organized of America’s Mentally Ill. New York: Free Press. lip-reading classes for deafened and hard-of-hearing people. She wrote Pre-School Education of Deaf- Mute Children (1947). ᨘ RECREATION —Anna Komarova and Victor Palenny Recreation is any pleasurable activity that is freely See also Fedor Andreevich Rau. chosen. It is an activity that diverts, amuses, or stimu- lates. It is an activity that refreshes and recreates, that renews health and spirits by enjoyment and relaxation. ᨘ RAY, ISAAC (1807–1881) Recreation can be done alone or with others, it can Father of American forensic psychiatry be active or passive, and it can be artistic or athletic. Recreation has both intrinsic and extrinsic benefits. Isaac Ray was one of a handful of men in mid- Recreation is an important part of life for all people. nineteenth-century America who were largely responsi- It is a powerful force in people’s lives. Recreation ble for establishing the first generation of public makes people feel good about themselves and helps institutions specifically aimed at serving the mentally ill people to stay socially connected to other people. population. Along with his fellow asylum superinten- Recreation is revitalizing and rejuvenating. Research dents (e.g., Pliny Earle, Thomas Kirkbride, Amariah shows that higher levels of involvement in recreation Recreation———1353 activities are associated with increased ratings of well- and enhance opportunities for people of varying being and life satisfaction. Yet, people with disabilities abilities to participate and interact in life with dignity. are often less involved in recreation. Some people The availability of inclusive recreation provides the with disabilities do not have access because of a lack right to choose from the full array of recreation oppor- of exposure to and training in recreation settings. tunities offered in diverse settings and environments. There are myriad reasons, but the fact remains that For inclusive recreation to be effective, necessary people with disabilities are involved in recreation less support, assistance, and accommodations must be than their typical peers. provided. This support, assistance, and accommoda- Recreation enhances self-esteem and the quality of a tion must be responsive to each person’s needs and person’s life as well as the ability to occupy one’s free preferences. Types of support, assistance, and accom- time in a socially valued and acceptable manner, which modations include but are not limited to qualified staff, has a significant impact on where a person is able to adaptive equipment, alternative formats for printed or live, whether he or she functions successfully in the audio materials, trained volunteers, and/or flexibility community, and the quality of relationships that a person in policies and program rules. develops. Social and recreation experiences have the In addition, to facilitate inclusive recreation, power to generate skills that can be transferred to work, environments should be designed to encourage social housing, family relationships, and so on. Thus, recre- interaction, risk taking, fun, choice, and acceptance ation experiences can facilitate an individual’s successful that allow for personal accomplishment in a coopera- integration into other spheres of life. tive context. All physical and programmatic barriers In practice, there are three distinct types of should be eliminated to facilitate full participation by recreation services. They include inclusive recreation individuals with disabilities. (often simply called recreation), special recreation Inclusive recreation means that all recreation pro- (sometimes referred to as specialized or segregated grams are available to all people, regardless of ability recreation), and therapeutic recreation (also called level. Ensuring that all people have equal opportunity recreation therapy). Each will be described below. to participate in recreation activities of their choice can be difficult. A detailed, systematic procedure to facilitate inclusive recreation is outlined in the LIFE INCLUSIVE RECREATION (Leisure Is for Everyone) materials and can be found Inclusive recreation includes pleasurable activities in Bullock and Mahon (1997). or experiences in naturally occurring environments Not everyone believes that inclusive settings and alongside people with and without disabilities rather experiences are the best for people with disabilities. than in settings that only include people with disabil- Some believe that it is better for people with disabili- ities. In inclusive settings, necessary accommodations ties to participate in recreation activities alongside and supports are provided to ensure that people with peers with similar abilities. In that case, there are many disabilities can be involved on as equal a basis as pos- opportunities for recreation involvement in special or sible. Even when the disability is too severe to “level segregated settings. the playing field,” some people with disabilities or their advocates may choose an inclusive recreation SPECIAL RECREATION setting in which “partial participation” is allowed. Including people with disabilities in the fabric of life Special recreation is the provision of recreation services strengthens the community and its individual members. and programs in settings only with other people with Recreation in naturally occurring environments rather disabilities. Necessary accommodations and modifica- than in special, segregated settings can offer flexibility, tions are made to assist the person with a disability to choice, self-determination, individuality, and decision enjoy the activity. Many of these programs occur in making. Inclusive recreation experiences encourage municipal parks and recreation departments. Examples 1354———Recreation of other special recreation programs/activities include (therapeutic recreation specialists) to promote the Special Olympics and Wheelchair Sports. independent functioning and to enhance optimal health For those who believe that it is best for people and well-being of people with illnesses and/or disabling with disabilities to be with other people of similar conditions. Therapeutic recreation often occurs in ability levels, there are special or segregated recre- hospitals and other treatment facilities. ation opportunities. Many people believe that it is nec- Therapeutic recreation is founded on the basic essary to first learn skills and have experiences in premise that recreation has therapeutic value. Various separate settings and then move to inclusive settings. researchers have found that recreation experiences Others believe that requisite skills can and should be can assist people to manage and reduce the impact of learned in inclusive settings. Whatever the belief, in stressors in their lives, to cope with the transitions of the United States, it is required by law (Americans aging, and to maintain overall physical and psycho- with Disabilities Act) that when separate recreation logical health. The National Consensus Conference programs exist, there must be options for participation on the Benefits of Therapeutic Recreation in in regular, typical (inclusive) recreation as well. For Rehabilitation (1991), funded by National Institute on example, a local parks and recreation agency can offer Disability and Rehabilitation Research (NIDRR), beginning guitar lessons open only to persons with found that recreation had therapeutic benefits in (1) severe mental retardation; however, any person with physical health and health maintenance, (2) cognitive severe mental retardation must be allowed to partici- functioning, (3) psychosocial health, (4) growth and pate in the regular guitar lessons alongside people personal development, (5) personal and life satisfac- without retardation, and appropriate accommodations tion, and (6) societal and health care system outcomes must be made to facilitate participation in the regular (Coyle et al. 1991:353). (inclusive) setting. Most special recreation programs As therapeutic recreation has evolved over the exist in municipal parks and recreation departments, years, several different models, or sets of assumptions YM/YWCAs, Boy and Girl Scouts, and similar pro- and beliefs, have emerged. For example, the “medical grams. The Special Olympics is one of the best-known model” is based on the assumption that growth and examples of a separate program. development are biological processes that occur in a There is another category of specialized recreation predictable fashion, that there is a “normal” and an programs. These are competitive sport programs for “abnormal” way to grow and develop, that health rep- people with disabilities, such as wheelchair sports, resents an absence of illness or symptoms, that illness that are not available to people who do not have dis- represents a breakdown of biological processes, that abilities. Competitive sport for people with disabilities the goal of treatment is the removal of symptoms of can be traced back to the 1870s in the United States illness, and that the health care provider possesses with the beginning of sport programs for students at a the knowledge, expertise, and ability to restore the state school for the deaf in Ohio. However, sport pro- individual to a state of health. grams flourished following World War II as a part of Working within the medical model, the recreation the rehabilitation of disabled veterans in the United therapist would take the role of the expert who deter- States and Europe. The disabled sport movement grew mines the problems to be addressed, the desired out- steadily and is now characterized by national and comes of treatment, and the specifics of how the international competitive events, the best known and intervention will occur. The goal of the recreation ther- respected of which is the Paralympics, which is held apist’s interventions would be to remove or reduce the in conjunction with the Olympics. symptoms of the illness. The client’s role would simply be to comply as closely as possible with the therapist’s THERAPEUTIC RECREATION instructions and recommendations. In contrast, a more “wellness-oriented” model is Therapeutic recreation is the purposive use of recre- based on the assumption that growth and development ation/recreative experiences by qualified professionals are unique to each individual and occur in response to Recreation———1355 both internal biology and a supportive and nourishing Assessment is the first step undertaken by the environment; that “health” represents a full and opti- recreation therapist because it sets the direction for the mal expression of the individual’s capacities and “purposeful intervention” by enabling the therapist to uniqueness, that illness occurs in response to an inter- focus specifically on the strengths, needs, and health action between internal and environmental conditions concerns of the individual being served. Assessment and represents a restricted or limited expression of the may be defined as a systematic process of gathering self, that the goal of treatment is to enable the individ- and synthesizing information about an individual and ual to fully experience his or her own uniqueness and his or her world to determine the most effective course health, and that the health care provider cannot control of intervention. Some assessments are standardized, the process of healing but rather can only support it. while some are more flexible, allowing the therapist The recreation therapist working within a wellness more latitude in how and when to administer them. model would tend to take the role of a facilitator and Generally, it is recommended that more than one supporter. The recreation therapist would collaborate method or instrument be used to gain the most accu- with the client in defining the problem, the desired rate and complete “sense” of the individual. An effec- outcome, and the means of achieving that outcome. tive assessment will provide information about the The client, rather than being asked to comply, would individual’s functioning at the beginning of the inter- be asked to be essentially an expert on his or her own vention, his or her desires and goals for intervention, health and asked to join actively with the therapist in and some possible ways to structure the intervention. their common pursuit. It provides a “baseline” against which to measure pro- Historically, most recreation therapists have worked gress and outcomes. either in hospitals or long-term care settings. More The planning phase (sometimes called “treatment specifically, most recreation therapists have worked in planning,” “individualized program planning,” or psychiatric services, physical medicine services, or “care planning,” depending on the setting) is one in nursing homes. Today, recreation therapists work in a which the strengths, needs, and goals of the individ- broader range of environments, including inpatient ual, as well as the expertise and contributions of the health care (hospital) settings in many service areas, therapist, are organized into a coherent plan that max- outpatient health care settings, schools, and community- imizes the chance that the individual will reach her or home-based contexts. These contexts are described or his desired outcomes. This phase of the therapeutic in detail by Kraus and Shank (1992). recreation process is often as much an “art” as a “science,” as it involves creatively and sensitively THE PROCESS OF THERAPEUTIC combining many elements of skill, timing, and rela- RECREATION INTERVENTION tionship to achieve a positive and meaningful goal. Many settings have particular guidelines or require- The practice of therapeutic recreation encompasses a ments for the development and formatting of wide and varied spectrum of individuals, interventions, intervention plans. In some settings, the recreation activities, and contexts. “Clinical process” in therapeu- therapist will develop specific “recreation goals.” For tic recreation provides consistency—that is, regardless example, “the patient will be able to fish indepen- of the context or content of the intervention, recreation dently” is a possible recreation-based goal for an therapists follow a systematic sequence of assessment, individual who has experienced a stroke and needs to planning the intervention, implementing the interven- master the use of adaptive equipment to continue tion, planning for transition, and evaluation to system- his or her most valued recreation pursuit, fishing. In atically document the outcomes of their interventions. others, the recreation therapist will develop goals These processes and activities maximize the likelihood pertaining to aspects of functioning that are more that the services provided by the recreation therapist generalized and are attainable through participation are individualized, purposeful, outcome focused, and, in recreation pursuits. For example, “the client will ultimately, effective. reduce perceived levels of stress through increased 1356———Recreation physical activity” is a possible goal for an individual Ideally, transition planning should begin during, who is experiencing symptoms of anxiety disorder. rather than at the end of, treatment, so that the client The next phase of the therapeutic recreation will have the opportunity to plan for and preferably process is implementation, or the actual delivery of visit or experience some of the settings that will be services. Recreation therapists have a wide spectrum encountered in the next phase of his or her life. Compre- of options for their interventions, allowing them to tai- hensive transition planning involves exploration of the lor to the needs of the individuals being served. A sig- places, persons, opportunities, and resources that will nificant portion of the recreation therapist’s training is be part of the individual’s life; exploration of the sup- devoted to studying and mastering these intervention ports available; and identification of “next steps” for options. Interventions may be conducted one-on-one that person’s development. or in groups. Ideally, the needs and preferences of the The final phase of the therapeutic recreation process client and the professional judgment of the therapist is the evaluation of the effectiveness of the intervention. should drive the decision about how services are As discussed in the “planning” phase, the therapist does offered, and many times, a recreation therapist will not wait until the end of the intervention to evaluate its have the opportunity to work with a client in both one- effectiveness; rather, built-in mechanisms are already on-one and group contexts, as needed. Each modality in place for evaluation or monitoring along the way. has advantages and appropriate uses. One-on-one Various aspects of the intervention may be evaluated, services allow for maximum flexibility in individual- depending on the requirements and needs of the setting, izing and contextualizing interventions and in truly including attainment of identified goals, effectiveness of moving at the client’s own pace. They allow the ther- the intervention over time, satisfaction with services for apist to devote all attention to the individual client, clients and families, and cost-effectiveness of services. which may be important when a great deal of hands- on assistance is needed. Group interventions, on the other hand, allow for the development of interpersonal CONCLUSION relationships and for the reinforcement and encour- There are increasing efforts to involve people with dis- agement that arise from working together with a group abilities in recreation activities and programs. Whether of peers on a common goal or concern. it be inclusive recreation, special recreation, or thera- Services may be provided in a relatively segregated peutic recreation, attention is being paid to the impor- setting, as in a classroom or treatment center, or in an tance of choice to ensure individuality and dignity in inclusive setting, as in a restaurant or movie theater. It is the pursuit of pleasurable activity by people with dis- common practice in therapeutic recreation interventions abilities. Within the recreation field, there is a recogni- to deliver interventions in both settings, in a sequenced tion by professionals that extra efforts are required to manner, so that the client may receive instruction and ensure that people with disabilities have opportunities rehearsal opportunities in the safety of the classroom but to be involved in activities and experiences that refresh, then will have the opportunity to master those skills in recreate, and renew health and spirits by enjoyment his or her natural environment, at first with support and and relaxation of a full array of recreation offered in then with increasing independence. diverse settings and environments. The next phase of the therapeutic recreation process is sometimes called discharge planning (in —Charles C. Bullock inpatient, residential, or medical model outpatient See also Classification in Paralympic Sport; Exercise and Physical facilities) or transition planning (in educational con- Activity; Paralympics; Sports and Disability. texts). It is a crucial part of the process that provides continuity, as it is the phase in which the individual Further Readings and the therapist have the chance to look at what Austin, D. R. 1999. Therapeutic Recreation: Process and has been accomplished, what challenges will emerge Techniques, 4th ed. Champaign, IL: Sagamore. in the future, and what supports are needed as the indi- Austin, D. R. and M. E. Crawford. 2001. Therapeutic Recreation: vidual moves on to a more independent setting. An Introduction, 3d ed. Boston, MA: Allyn & Bacon. Refusal of Life-Sustaining Treatment———1357

Bullock, C. C. 1987. “Recreation and Special Populations.” referred to as the principle of self-determination or bodily Pp. 203–207 in Recreation and Leisure: An Introductory inviolability. In the British common-law tradition, this is Handbook, edited by A. Graef and S. Parker. State College, best illustrated by the law of battery, where it is said that PA: Venture. Bullock, C. C. and M. J. Mahon. 1997. Introduction to Recreation the merest touching of a person’s body without that Services for People with Disabilities: A Person Centered person’s consent is an actionable wrong. Similarly, in the Approach. Champaign, IL: Sagamore. American common-law tradition, it has been held most Coyle, C. P., W. B. Kinney, B. Riley, and J. W. Shank. 1991. famously by Justice Cardozo in Schloendorf v. Society of The Benefits of Therapeutic Recreation: A Consensus View. New York Hospital (1914) that Ravensdale, WA: Idyll Arbor. Datillo, J. 1994. Inclusive Leisure Services: Responding to the every human being of adult years and sound mind has Rights of People with Disabilities. State College, PA: a right to determine what shall be done with his own Venture. body; and a surgeon who performs an operation with- ———. 1999. Leisure Education Program Planning: A Systematic Approach. State College, PA: Venture. out his patient’s consent commits an assault, for Kraus, R. and J. Shank. 1992. Therapeutic Recreation Service: which he is liable in damages. Principles and Practices. Dubuque, IA: Brown. Peterson, C. A. and N. J. Stumbo. 2000. Therapeutic Recreation This common-law right to refuse treatment is also Program Design: Principles & Procedures, 2d ed. accepted in South Africa, Australia, New Zealand, and Englewood Cliffs, NJ: Prentice Hall. Canada. Schelein, S. J. and M. T. Ray. 1988. Community Recreation and Persons with Disabilities: Strategies for Integration. Baltimore: Brookes. Smith, R.W., D. R. Austin, and D. W. Kennedy. 2002. Inclusive A RIGHT TO MAKE and Special Recreation: Opportunities for Persons with Dis- AN UNREASONABLE DECISION abilities, 4th ed. St. Louis, MO: McGraw-Hill. Sylvester, C., J. E. Voelkl, and G. D. Ellis. 2001. Therapeutic The right is so fundamental that a person’s reasons for Recreation Programming: Theory and Practice. State deciding to refuse treatment are not subject to review, College, PA: Venture. no matter how objectively unreasonable the decision is. For example in the New Zealand case of Smith v. Websites Auckland Hospital (1965), Justice Greeson stated that American Therapeutic Recreation Association, http://atra-tr.org “an individual patient must, in my view, always retain National Alliance for Accessible Golf, http://accessgolf.org the right to decline investigation or treatment however National Center for Physical Activity and Disability, http:// unreasonable or foolish this may appear in the eyes of ncpad.org National Council on Therapeutic Recreation Certification, http:// his medical advisers.” In Britain, Lord Donaldson, www.nctrc.org in the case of Re T (1922), stated that “this right of National Therapeutic Recreation Association, http://www.nrpa choice is not limited to decisions which others might .org/content/default.aspx?documentId=530 regard as sensible. It exists notwithstanding that the Special Olympics, http://www.specialolympics.org reasons for making the choice are rational, irrational, Wheelchair Sports, USA, http://wsua.org unknown or even non-existent.” In the American case of Lane v. Candura (1978), it was said that “the law protects [the patient’s] right ᨘ REFUSAL OF to make [his or] her decision to accept or reject treat- LIFE-SUSTAINING TREATMENT ment, whether that decision is wise or unwise.” The right to refuse treatment has other sources apart A competent person has the right to refuse medical from the common-law principle of self-determination. treatment, even when that treatment may be necessary In some cases, the right to refuse has been sourced in to preserve the person’s life or prevent serious illness the common-law doctrine of informed consent or in or disability. rights to privacy. Constitutional guarantees of privacy The right to refuse treatment stems from the right and freedom of religion have also been found to support to control what is done to your body. This is sometimes the right. 1358———Refusal of Life-Sustaining Treatment

TYPES OF TREATMENT to the question of whether the directive was made THAT MAY BE REFUSED thoughtfully, seriously, and in circumstances free of the undue influence of others. A person has the right to refuse all treatments, Many jurisdictions have also legislated for advance even minor or minimally invasive treatments that will directives. Every state in the United States has advance preserve life. A commonly occurring example is the directive legislation. Legislative schemes also exist in refusal of blood products, due to religious beliefs, parts of Australia, and there are also moves toward intro- such as those held by Jehovah’s Witnesses and Christian ducing legislation in England and Wales. Scientists. People can also refuse artificial ventilation, resusci- LIMITATIONS ON THE RIGHT tation, and artificial feeding in circumstances where TO REFUSE TREATMENT they will die without them. This position was accepted in Canada in Nancy B v. Hotel-Dieu de Quebec (1992), The right to refuse treatment is not absolute. The first where the patient’s right to refuse ventilation was limitation is that a patient be competent before his or her held to be almost absolute. In Bouvia v. Superior Court decision to refuse treatment is considered as binding. (Glenchur) (1986), the Californian courts upheld the The second limitation consists of public or state right of a cerebral palsy sufferer to remove a nasogas- interests that may override a competent person’s tric tube that was keeping her alive. In Blackman v. refusal. There are several situations in which the courts New York City Health and Hospitals Corporation have upheld the state’s interest in preserving life over (1997), a competent 88-year-old woman who was on a the individual’s right to refuse treatment. Among these ventilator and feeding tube was successful in seeking are the interests of the state in compulsory vaccination an order that all medical treatment being provided to (Jacobson v. Massachusetts [1905]), preventing children her cease, barring treatment to alleviate pain. from becoming orphans when their parents are refus- Other examples of treatment that have been ing treatment (Holmes v. Silver Cross Hospital of Joliet refused include operations to remove gangrenous limbs [1972]), and safeguarding the ethical integrity of the (see, e.g., Lane v. Candura [1978] and In Matter of medical profession (R v. Ashworth Hospital; ex parte Quakenbush [1978]) and the administration of psy- Brady [2000]). Over time, these state interests have chotropic medication (Fleming v. Reid [1991]). become less likely to justify the overriding of a com- petent refusal of treatment. ADVANCE DIRECTIVES Most troubling are those cases where the rights OR LIVING WILLS of pregnant women to refuse treatment are balanced against the state interest in protecting the unborn It is possible to make a decision to refuse treatments child. Earlier cases indicated that women could be that might be offered to you sometime in the future, forced to undergo procedures such as caesarian when you may be unable to communicate a competent sections, if they were necessary to save the life of the decision. Such decisions are most commonly referred unborn child (Jefferson v. Griffin Spalding County to as advance directives or living wills. Hospital Authority [1981]). Later cases have shown a In most common-law jurisdictions, advance direc- judicial reluctance to override the rights of competent tives can be made orally or in writing. To be valid, an women on grounds that it would be discriminatory to advance directive must have been made by a compe- do so as it would severely limit pregnant women’s tent person and must be specific enough to be able rights of autonomy. This is the accepted position to be applied in the circumstances that have arisen. in many U.S. states and in the United Kingdom (Re Ordinarily, clear and convincing evidence is needed Fetus Brown 689 [1997] and St. George’s Healthcare show that the decision was based on an informed NHS Trust v. S; R v. Collins; ex parte S [1998]). opinion and was intended to apply to the circum- The state’s interest in maintaining order and stances that arose. In addition, weight is also accorded discipline in prisons has also been used to override a Refusal of Life-Sustaining Treatment———1359 prisoner’s right to refuse treatment (including force say that death is not caused by the person refusing feeding; see Laurie v. Senecal [1995]), but there is a treatment but by the underlying disease or disability. wide variation in the types of rights enjoyed by pris- Many commentators see these arguments as spuri- oners across jurisdictions, and in some jurisdictions, ous. First, while it may be true that some patients do it has been said that prisoners even have a right to not desire death in refusing life-sustaining treatment, die (Reeves v. Commissioner of Police [1999]). there are several cases where patients expressly stated The state also has an interest in preventing suicide. that death was their aim (see, e.g., State v. McAfee While committing suicide is no longer criminalized in [1989]). Second, to say that death is caused by disease most jurisdictions, assisted suicide remains a crime. or disability ignores the fact that the disease or The courts have limited the right to refuse treatment disability would not have caused death without the so that it does not extend to cover assistance from a treatment being ceased. Moreover, it ignores the third party to commit suicide. The right to refuse treat- active role played by physicians in actively helping ment only extends to the withdrawal of life-sustaining the patient by administering sedatives or painkillers treatment, not active voluntary euthanasia. The courts that accelerate the dying process. have therefore been very careful to distinguish deci- Regardless of these logical problems, the law in sions to refuse treatment from requests for assisted several jurisdictions has upheld the distinction between suicide. refusing treatment and assisted suicide, accepting the This is illustrated by Rodriguez v. British Columbia former and criminalizing the latter. (Attorney-General), where a patient with amyotrophic —Cameron Stewart lateral sclerosis (ALS), also known as Lou Gehrig’s disease, wished to have a physician supply her with a See also Euthanasia; Physician-Assisted Suicide. “suicide machine” that she could activate when she could no longer tolerate her condition. She sought a Further Readings declaration that would invalidate the criminal provi- AMA Policy. sions that made the aiding and abetting of suicide an American Medical Association. 2004. Retrieved March 8, 2004 (www.ama-assn.org/ama/pub/category/2830.html). offense. British Medical Association. 2004. Physician Assisted Suicide The majority of the Canadian Supreme Court found Project. Retrieved March 8, 2004 (www.bma.org.uk/ap.nsf/ that the provisions of the criminal law did not infringe Content/__hub+physician+assisted+suicide). on the guarantees of the Canadian Charter of Rights Lomond, K. 1993. “Note: Adult Patient’s Right to Refuse and Freedoms. According to the court, the criminal Treatment for Religious Reasons: The Limitations Imposed University of Louisville Journal of Family prohibition may have deprived the patient of her by Parenthood.” Law 31:665–683. autonomy and caused her physical pain and distress, Magnusson, Roger S. 1997. “The Sanctity of Life and the Right to but such a deprivation was not found to have been Die: Social and Jurisprudential Aspects of the Euthanasia contrary to the principles of fundamental justice, as Debate in Australia and the United States.” Pacific Rim Law secured by the charter. The court could not make fun- & Policy Journal 6:1–83. damental changes to the long-standing and almost Meisel, Alan. 1995. The Right to Die, 2d ed. New York: John universal policy against euthanasia. Wiley. Price, David. 1996. “Assisted Suicide and Refusing Medical There are several difficulties with the prohibi- Treatment: Linguistics, Morals and Legal Contortions.” tion against assisted suicide and its relationship with Medical Law Review 4:270–299. refusals of treatment—namely, the logical and legal Scott, Rosamund. 2002. Rights, Duties and the Body: Law and distinction between the two. The courts have Ethics of the Maternal-Fetal Conflict. Oxford, UK: Hart. attempted to distinguish active euthanasia from treat- Stewart, Cameron. 1999. “Advance Directives, the Right to Die and ment refusal on two grounds. The first ground is that the Common Law: Recent Problems with Blood Transfusions.” Melbourne University Law Review 23:161–183. the person is not suicidal because this individual does Vollmar, V. 2004. Professor Valarie J. Vollmar’s Physician Assisted not desire death: he or she only wishes for treatment Suicide Site. Retrieved March 8, 2004 (www.willamette.edu/ to cease. The second ground relied on by courts is to wucl/pas/index.cgi). 1360———Rehabilitation Act of 1973 (United States)

ᨘ REHABILITATION ACT that receive federal financial assistance. But for OF 1973 (UNITED STATES) Section 504 to be implemented, federal agencies must adopt regulations implementing this legislation. When The roots of today’s rehabilitation system for civil- President Jimmy Carter refused to sign the regulations ians with disabilities in the United States, particularly without significantly weakening the language, hun- those with work injuries, lie in the Smith-Fess Act dreds of individuals with disabilities protested. They of 1920. The act was based on the belief that, with occupied regional offices of the Department of Health professional training and intervention, people with Education and Welfare, the agency responsible for disabilities could return to productive employment. promulgating the regulations, until the regulations Support for vocational rehabilitation (VR) programs were finally signed into law. grew during the years that followed until finally, in In 1990, the Americans with Disabilities Act 1935, the law made the provision of VR services by (ADA) was passed, which broadened these nondis- each state mandatory. crimination and access requirements to include public During the next several decades, the act was services and other entities that did not receive federal expanded to broaden the definition of eligibility for dollars. The ADA’s drafters incorporated many of the rehabilitation services to include people with more provisions of the Section 504 regulations into the act. severe, congenital disabilities, such as blindness, In 1998, the Rehabilitation Act and other employ- mental illness, and mental retardation. Services were ment programs were incorporated into the Workforce expanded to include physical restoration and living Investment Act (WIA). The goal of the WIA is to increase expenses, as well as vocational evaluation and work the employment, job retention, and earnings of people adjustment. The act provided funds for graduate who participate in employment-related activities, programs in rehabilitation and funded construction of including people with disabilities. The intent of the WIA rehabilitation centers and sheltered workshop facili- is to create a user-friendly, one-stop system of service ties, although these activities are no longer funded. delivery through the coordination of multiple workforce In 1973, the act was again amended to mandate that development programs. This one-stop system must be agencies establish an “order of selection” to ensure designed to address the needs of all individuals and that people with severe disabilities receive services must be accessible to people with disabilities as required before individuals with less severe disabilities and to under the ADA and Section 504 of the Rehabilitation require that a written rehabilitation plan be developed Act of 1973. The state rehabilitation program must be an to ensure that clients themselves have a strong voice integral part of this one-stop system. in the services they receive. Today, the Rehabilitation Act is guided by strong The 1973 amendments also included Title V, the principles, including respect for the dignity of all indi- first civil rights legislation for individuals with dis- viduals, personal responsibility, self-determination, abilities. Passing with little congressional debate, Title and pursuit of meaningful careers; the act promotes V bans discrimination against people with disabilities inclusion, integration, and full participation of people in programs receiving federal financial assistance. with disabilities. The Rehabilitation Act contains Section 503 requires that federal contractors adopt seven titles that regulate and fund disability employ- affirmative action programs to hire individuals with ment and independent living programs. Some of the disabilities. Section 504 requires that programs key titles are the following. receiving federal financial assistance make “reason- able accommodation” for individuals with disabilities Title I provides grants to each designated state to participate fully in their programs and activities, agency, which employs rehabilitation counselors to in addition to the nondiscrimination requirements. For provide job training, advanced education, job place- the first time, accessibility was required of federally ment, postemployment support, assistive technology, funded transit systems, colleges and universities, and other services to assist individuals with disabili- health care institutions, and state and local programs ties to find and keep work. Rehabilitation Counseling———1361

Title III establishes the National Institute on counseling is most commonly provided to individu- Disability and Rehabilitation Research, to promote als newly disabled by a physical event or injury or to and coordinate research, demonstration projects, and those with a serious mental health or substance abuse training related to people with disabilities. problem. What makes rehabilitation counseling distinct from other disciplines is that it is activity Title V requires affirmative action by federal contrac- focused, involving learning by doing within real-world tors in hiring individuals with disabilities (Sec. 503) contexts. Other disciplines tend to be therapy focused, and nondiscrimination against people with disabilities usually occurring in institutional settings. The evalua- in programs and activities receiving federal financial tion component of rehabilitation counseling typically assistance (Sec. 504). In 1998, Section 508 was added involves the assessment of a client’s problems or goals to require that electronic and information technology and the formulation of a treatment plan. The coun- purchased by or used in federal programs be accessi- seling component may seek to assist clients across a ble to people with disabilities. wide range of life domains, including activities of daily living, vocational functioning, social functioning, Title VII regulates and funds independent living services advocacy and resource acquisition, coping, and lifestyle and centers for independent living, which provide change. The central aim of rehabilitation counseling is services and advocacy for individuals with significant to empower clients to live more independently and disabilities. Chapter Two of this title provides services satisfactorily while also advocating for clients’ rights, to older blind individuals. needs, and hopes. Rehabilitation counselors help to —Bonnie O’Day reduce the cultural stigma that persons with disabili- ties experience. Generally, society views persons See also Accessible Internet; Americans with Disabilities Act of with disabilities as flawed and needy. This cultural 1990 (United States); Vocational Rehabilitation; Vocational milieu promotes feelings of dependence and inade- Rehabilitation: Law and Policy. quacy in persons with disabilities. Rehabilitation Further Readings counselors counter these attitudes by helping persons with disabilities to function and excel in real-world Disabled Policy: America’s Berkowitz, Edward. 1987. educational, vocational, domestic, and familial Programs for the Handicapped. New York: Cambridge Univer- sity Press. contexts. Scotch, Richard V. 1984. From Goodwill to Civil Rights: The One of the hallmarks of rehabilitation counseling Transformation of Federal Disability Policy. Philadelphia: is that it is a pragmatic approach that facilitates reha- Temple University Press. bilitation through the use of techniques found across Silverstein, Robert. 2000. “A Description of the Workforce multiple fields. Frances Reynolds (1999) distin- Investment Act from a Disability Policy Perspective.” guishes it from other approaches to physical rehabili- Washington, DC: Center for the Study and Advancement of Disability Policy. Retrieved October 13, 2003 (http://www tation in that it may borrow techniques from a variety .disabilitypolicycenter.org). of orientations to facilitate adaptation and adjustment Workforce Investment Act of 1998, 29 U.S.C. § 794d. to a disability. For example, rehabilitation coun- selors such as Richard Hardy, Warren Rule, and John Cull have described using various psychodynamic ᨘ REHABILITATION COUNSELING approaches in rehabilitation counseling contexts. Hardy (1999) has also described the use of Gestalt Rehabilitation counseling is a pragmatic, strength- therapy and hypnosis, while Joseph Ososkie (1998) based approach to counseling persons with disabili- has described existential perspectives, and Gerald ties. It shares similarities with certain aspects of a Gandy (Gandy, Martin, and Hardy 1999) and a number of related disciplines, including physical number of others have used cognitive-behavioral ther- rehabilitation and occupational therapy, psychiatry, apy and integrative techniques to facilitate a person’s psychology, nursing, and social work. Rehabilitation acceptance and adjustment to a disability. Nancy 1362———Rehabilitation Counseling

Crewe (1997) has contributed a number of articles approaches. In addition, rehabilitation counselors on functional assessment and outcomes rehabilitation work in varied settings. These settings range from pri- counseling for individuals with spinal cord injury and vate settings, such as private rehabilitation centers and traumatic brain injury that have provided valuable hospitals, health insurance companies, and employ- insight into the lives of persons with disabilities. Brian ment counseling firms, to public settings that include McMahon has written a number of articles about the state agencies of rehabilitation services, the fed- rehabilitation counseling and supported employment eral Social Security Administration, and other govern- for individuals with a wide range of disabilities, includ- mental organizations. For these reasons, these scholars ing traumatic brain injuries that have moved the field argue that many may not understand the unique and toward a more empowerment-focused ideology (e.g., cohesive mission and vision of the field. In addition to McMahon and Shaw 1996). In sum, the field of reha- this challenge of understanding breadth, the field has bilitation counseling can be characterized by a wide been forced to confront changes in practice settings, variety of approaches that are drawn from the distinc- evolving federal legislative regulations, and the certi- tive psychological issues facing people with disabilities fication movement. The field has attempted to respond and from the theory, research, and practice of general to these challenges by explicitly defining major areas counseling and psychotherapy. To an important extent, of required knowledge and skills. Recently, Leahy, these approaches are framed by the goal of a person Chan, and Saunders (2002), as well as others, have retaking his or her full potential and ability after the sought to describe the job functions and training onset of a disability. requirements of certified rehabilitation counselors for With respect to training and certification, two the twenty-first century. One set of core job functions initiatives in the United States have worked to ensure concerns employment and includes vocational assess- that rehabilitation counselors are adequately educated ment, counseling, and consultation to identify interests and sufficiently competent to enter the profession: and competencies, provide job retraining and practice, program accreditation and certification for practice. identify potential job placements for clients, and, ulti- These two movements have helped set national stan- mately, increase client readiness for and likelihood of dards for skill-level proficiency and knowledge ade- stable employment. Another central role of the reha- quacy of rehabilitation counselors. National standards bilitation counselor concerns promoting effective include knowledge about vocational counseling and coping with daily and community life. It involves consultation, effective counseling, case management, counseling activities that range from assessment of service availability, medical and psychosocial aspects clients in terms of resource needs to case management. of disability, and history and systems of rehabilita- It also includes specific counseling interventions that tion. A similar movement has taken place in Canada. are designed specifically for the consumer’s abilities Michael Leahy has written about perceptions of and environment. Rehabilitation counselors also con- knowledge requirements among certified rehabilita- duct community-based rehabilitation service activities, tion counselors in Canada (see, e.g., Leahy, Chan, and where their knowledge of health care and disability Magrega 1997). Domains of required knowledge systems empowers them to engage in professional identified by Canadian counselors were very similar advocacy. In sum, rehabilitation counselors work with to the domains of knowledge that U.S. rehabilita- the psychological, medical, functional, and environ- tion counselors endorse, including knowledge of psy- mental implications of disability to support and ready chosocial aspects of disabilities and systems of their clients for independent functioning and commu- rehabilitation. nity integration. Scholars such as Jared Schultz, Joseph Ososkie, Over the past 30 years, the profession has expanded and Elias Mpofu have commented on the state of the outside of state vocational rehabilitation agencies and field of rehabilitation counseling. The field of rehabil- into schools, medical settings, mental health settings, itation counseling tends to serve a diverse population substance abuse settings, geriatric settings, employee of individuals with disabilities using a wide range of assistance programs, private practice settings, and Rehabilitation Engineering———1363 community-based organizations. Relatedly, a growing Hardy, Richard E. 1999. “Gestalt Therapy, Hypnosis, and Pain number of integrative, community-based approaches to Management in Cancer Treatment: A Therapeutic Application rehabilitation counseling have developed. These of Acceptance and Adjustment to Disability.” Pp. 251–257 in Counseling in the Rehabilitation Process: Community approaches seek to combine counseling and advocacy Services for Mental and Physical Disabilities, 2d ed., edited efforts. David Hershenson (1998) has described one by Gerald L. Gandy, Martin E. Davis Jr., and Richard approach that involves four elements of rehabilitation. E. Hardy. Springfield, IL: Charles C Thomas. These include restoring or replacing assets and skills, Hershenson, David B. 1998. “Systemic, Ecological Model for reintegrating identity and self-image, reformulating Rehabilitation Counseling.” Rehabilitation Counseling Bulletin goals, and restructuring the environment. Lloyd Goodwin 42:40–50. Leahy, Michael, Fong Chan, and D. J. Magrega. 1997. (1986) described another approach that involves eight “Knowledge Importance and Training Needs in Rehabilitation dimensions of rehabilitation: supporting wholeness of Counseling: Perceptions of Canadian Certified Rehabilitation the client, wellness, responsibility taking, prevention, Counselors.” Canadian Journal of Rehabilitation 10:215–229. uniqueness, disability as an opportunity for growth, Leahy, Michael, Fong Chan, and Jodi Saunders. 2002. “Job healing and rehabilitation approaches, and environmen- Functions and Knowledge Requirements of Certified Rehabil- tal sensitivity. Other fundamental principles of reha- itation Counselors in the 21st Century.” Rehabilitation Coun- seling Bulletin 46:66–81. bilitation counseling include normalizing roles and McMahon, Brian T. and Linda R. Shaw. 1996. “Neuropsychology relationships within society, building informal and and Rehabilitation Counseling: Bridging the Gap.” Pp. 369– egalitarian relationships, emphasizing empowerment, 386 in Ecological Validity of Neuropsychological Testing, focusing on present-moment concerns, and promoting edited by Robert J. Sbordone and Charles J. Long. Delray community integration. Principles that have emerged Beach, FL: Group Press. more recently within rehabilitation counseling include Mpofu, Elias. 2000. “Rehabilitation Counseling: Issues in Professionalization and Identity.” Rehabilitation Education multicultural sensitivity, evaluating outcomes, incorporat- 14:199–205. ing family members into treatment, and interdiscipli- Ososkie, Joseph. 1998. “Existential Perspectives in Rehabilitation nary collaboration. All these new approaches signify the Counseling.” Rehabilitation Education 12:217–222. strength of the rehabilitation counseling field as it evolves Reynolds, Frances. 1999. “When Models of Health Care Collide: and adapts to new political, cultural, and fiscal contexts. A Qualitative Study of Rehabilitation Counselors’ Reflections on Working in Physical Health Care Settings.” Journal of —Renee R. Taylor and Interprofessional Care 13:367–379. Curtis J. Jones Schultz, Jared and Joseph Ososkie. 1999. “Utilizing Brief Therapy Principles in Rehabilitation Counseling.” Journal of Applied See also Community-Based Rehabilitation; Employment; Inde- Rehabilitation Counseling 30:4–8. pendent Living; Vocational Rehabilitation. Websites Further Readings Center for International Rehabilitation Research Information and Ackerman, Paul. 2003. Report: Forum on International Exchange, http://cirrie.buffalo.edu Collaborative Research in Rehabilitation. Buffalo, NY: Center National Employment Counseling Association, http://www.geocities for International Rehabilitation Research Information and .com/Athens/Acropolis/6491/neca.html Exchange. Retrieved June 5, 2004 (http://cirrie.buffalo.edu/ National Rehabilitation Counseling Association, http://nrca-net.org proceedings/2003report.html). Crewe, Nancy M. 1997. “Life Stories of People with Long-Term ᨘ Spinal Cord Injury.” Rehabilitation Counseling Bulletin REHABILITATION 41:26–42. ENGINEERING Gandy, Gerald L., E. Davis Martin Jr., and Richard E. Hardy, eds. 1999. Counseling in the Rehabilitation Process: Community Services Rehabilitation engineering is a field that brings the art for Mental and Physical Disabilities, 2d ed. Springfield, IL: and science of engineering to the assistance of persons Charles C Thomas. Goodwin, Lloyd. 1986. “A Holistic Perspective for the Provision with disabilities. It encompasses engineering research of Rehabilitation Counseling Services.” Journal of Applied and development activities but also includes direct Rehabilitation Counseling 17:29–36. engineering services to persons with disabilities. 1364———Rehabilitation Engineering

Rehabilitation engineering is frequently viewed as a disabilities, cognitive disabilities, and the many component of the more general field of biomedical disabling conditions resulting from spinal cord injuries, engineering, which brings together engineering with head injuries, strokes, blindness and visual impair- medicine and biology. As a direct service to people, it ments, hearing impairments and deafness, neuromus- is related to occupational therapy and, to some extent, cular diseases, musculoskeletal conditions, arthritis, physical therapy. Although examples of rehabilitation orthopedic disabilities (bone and joint), cerebral engineering are almost as old as civilization itself, palsy, pulmonary insufficiencies, cardiac deficits, the field was not identified widely as “rehabilitation disabling conditions from birth, disabilities of aging, engineering” until the 1960s, when health agencies in disfigurement, and numerous other traumas, conditions, a number of countries began to recognize the benefits and diseases. of engineering insights and methods in the provision of assistance for persons with disabilities. TECHNOLOGY SERVES THE PROCESS

Rehabilitation engineering is connected with treat- DEVELOPMENT AND SCOPE ments and therapies (e.g., robotic-aided therapy). It is Limb prosthetics is a subspecialty of rehabilitation associated with the avoidance of secondary disabling engineering. It is concerned with the replacement conditions and with comfort and alleviation of pain of arms, hands, and legs with artificial components. (e.g., witness the significant role engineering played Since antiquity, specialists have provided artificial in the orthopedic success of total joint replacements). replacements for lost limbs, particularly limbs lost This field also has to do with access to medical and in the conflicts of wars. After World War II, persons rehabilitation services, tele-rehabilitation, and a wide with limb loss often reentered society successfully, scope of health care and possible cures that may result and high-quality artificial limbs coming out of feder- from genetics and stem cell medicine. ally sponsored research and development programs in prosthetics at that time contributed to this success. PERSONAL AIDS Consequently, in the late 1960s, the generalizing concept of rehabilitation engineering evolved, based The possibilities and prospects of rehabilitation engi- on the thought that if engineers could work cre- neering are as broad as life itself, which makes them atively with rehabilitation physicians and clinicians to innumerable. There are walking aids, functional elec- improve limb prosthesis outcomes, they probably trical stimulation of muscles, manipulation aids, and would also be able, through engineering techniques wheeled mobility (e.g., powered chairs such as the and scientific principles, to assist with the rehabilita- unique iBOT Mobility System). Issues to be addressed tion process for many other disabling conditions. include proper seating and positioning in wheelchairs Thus, the generalized field of rehabilitation engineer- and elsewhere, and management of pressure on body tis- ing was launched. sues. There are memory aids, and self-care aids (e.g., In the late 1960s, one of the original objectives for handling one’s medical prescriptions), speaking for the new field of rehabilitation engineering, as aids, reading aids, writing aids, hearing aids, visual aids, proposed by James B. Reswick, was “to improve the eating aids, teeth hygiene, toiletry aids, bladder and quality of life of the physically handicapped through a bowel management, recreational aids, temperature and total approach to rehabilitation, combining medicine, lighting controls, telephone controls, control of enter- engineering, and related science.” Today, this field is tainment equipment, assistance for caregivers, and viewed much more broadly, placing many chronically attention in general to as many aspects of independent disabling conditions under the possible purview of living as are feasible and reasonable. Modern computer- engineering approaches. Physical disabilities such as based technologies and wireless communication sys- limb loss are only one aspect of this field that now tems are making many of the aids listed available and also includes communication disabilities, sensory easily customized to individual needs. Rehabilitation Engineering———1365

ASSISTANCE ON A LARGER SCALE work closely with rehabilitation professionals and ideally may have disabilities themselves. The aim is Rehabilitation engineering deals with aspects of the to develop new knowledge (science and engineering) built and natural environments that may be inhibitory concerning rehabilitation processes and new superior to persons with disabilities. The elimination of archi- ways to solve problems that persons with disabilities tectural barriers, development of universal designs for experience. Much of the R&D work in rehabilitation home and public environments, and the arrangement is what might be described as applied research and for home and work site modifications are all within development. However, new approaches at the cellu- the domain of rehabilitation engineering. There is lar and molecular levels, new concepts in tissue engi- need for access to secure living quarters, access to neering, new nanotechnologies, and new biomaterials transportation and travel, and access to education and are basic research arenas that may open up completely employment opportunities. Access to information new concepts in rehabilitation. (e.g., the Internet) and to the origination of informa- tion is highly desirable. With the right technical tools, meaningful work can be made accessible. This kind SERVICE PROVIDERS of technology may also permit pursuit of hobbies and Engineers who deliver service directly to individuals avocational activities that can be invigorating and life with disabilities work basically as clinicians. Through enriching. training and experience, through working with other rehabilitation professionals, and through close interac- MULTIDISCIPLINARY INVOLVEMENT tion with the persons being served, they can begin to help their clients with rational decisions about which As a general rule, engineers in rehabilitation cannot rehabilitation engineering approaches and assistive be successful alone with their efforts. They need to devices may help them. Many providers of rehabilita- work together with physicians, surgeons, nurses, ther- tion engineering services in the United States are cre- apists, prosthetists, orthotists, and people with disabil- dentialed by RESNA (Rehabilitation Engineering and ities, their family members, and friends. This need for Assistive Technology Society of North America). The multidisciplinary experience exists both for engineers positions examined are assistive technology practi- who conduct research on new methods and tech- tioner (ATP), assistive technology supplier (ATS), and nologies to better serve persons with disabilities and rehabilitation engineering technologist (RET). The cre- for engineers who directly delivery rehabilitation dentialing process attempts to provide safeguards for engineering services to people. Nevertheless, the two clients and to increase client satisfaction. kinds of rehabilitation engineers—the service-providing Clients usually should have their medical condi- engineer and the research and development engineer— tions stabilized before being seen for rehabilitation work in fundamentally different ways. engineering consultation. Modes of communication also need to be established beforehand, if possible, RESEARCH AND DEVELOPMENT so that the client can interact in the discussions and in decision-making processes. After communication The rehabilitation engineer who conducts research has been achieved, it is important to determine if the and development (R&D) work usually is employed by person is comfortable. If not, the possible causes of a company that designs and/or manufactures rehabili- discomfort need to be investigated and eliminated. tation engineering equipment or is involved in R&D For example, good seating and positioning frequently work through a university-based laboratory that is need to be established to help clients relax and be funded by research grants. The R&D employee usu- more comfortable. After the client can communi- ally is a research engineer or scientist, often with a cate and is comfortable, an early step is to try to pro- Ph.D. in biomedical engineering or some related area vide that person with independent mobility. From this of science or engineering. The researchers usually point on, it is usually possible to begin to address 1366———Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) the many individual and unique needs of each client. interdisciplinary association composed of individuals Inevitably, this process usually involves many com- interested in technology and disability. Professionals promises as well as medical, engineering, and finan- in RESNA include occupational therapists, physical cial constraints. therapists, rehabilitation engineers, speech-language pathologists, special educators, manufacturers, and durable medical equipment suppliers. Consumers of A HUMAN ENDEAVOR assistive technology also belong to RESNA. In the end, rehabilitation engineering methods and RESNA started in 1980 as early research and techniques cannot rehabilitate a person with disability. development work in the field began at federally funded True rehabilitation must somehow come from within rehabilitation engineering research centers (RERCs). the person with disability, aided primarily by human Each RERC focuses on one specific area of assistive love and compassionate care. Nevertheless, if one is technology, developing new technology, training new truly rehabilitated, the methods and techniques pro- professionals, and providing information to the public. vided by rehabilitation engineering can indeed greatly RESNA provides a forum for individuals with a enlarge the scope of his or her life. common interest in a particular area of assistive technology, through special interest groups (SIGs). In —Dudley Childress addition, RESNA’s professional specialty groups (PSGs) provide a way for specific disciplines to See also Activities of Daily Living (ADLs); Independent Living; Assistive Technology; Mobility Aids; Physical Activity. communicate with one another. Through the Technical Assistance Project and Further Readings Alternate Financing Project, RESNA provides assis- Cook, A. M. and Susan Hussey. 1995. Assistive Technologies: tance to the 56 state and territory assistive technology Principles and Practice. St. Louis, MO: Mosby. programs. These programs are funded under Public Rosen, M. J., ed. 2002. Recollections and Perspectives, special Law 105–394 to increase awareness of and access to issue of the Journal of Rehabilitation Research and Development assistive technology in each area. 39(6). Retrieved August 7, 2005, from www.vard.org/jour/ Through its credentialing program, RESNA pro- 02/39/6/sup/contents .html vides a mechanism for professionals to demonstrate Webster, J. G., A. M. Cook, W. J. Tompkins, and G. C. Vanderheiden, eds. 1985. Electronic Devices for Rehabilitation. New York: a knowledge and skill base critical to the delivery of John Wiley. assistive technology services. Three credentials exist: assistive technology practitioner (ATP), assistive tech- Websites nology supplier (ATS), and rehabilitation engineering LIFE Center, Rehabilitation Institute of Chicago, http://www technologist (RET). .rehabchicago.org/ RESNA’s international sister organizations— The Rehabilitation Engineering & Assistive Technology Society the Association for the Advancement of Assistive of North America (RESNA), http://www.resna.org/About Technology in Europe (AAATE), the Rehabilitation RESNA/AboutRESNA.php Engineering Society of Japan (RESJA), and the Australian Rehabilitation and Assistive Technology Association (ARATA)—provide forums for similar ᨘ REHABILITATION work around the world. On August 26, 2000, the ENGINEERING AND ASSISTIVE leaders of the four organizations signed the Tokushima TECHNOLOGY SOCIETY OF Agreement to promote exchange of information and NORTH AMERICA (RESNA) collaboration. —Glenn Hedman The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) is an See also Rehabilitation Engineering Society of Japan (RESJA). Rehabilitation Medicine, International———1367

Further Readings ᨘ REHABILITATION The Rehabilitation Engineering and Assistive Technology Society MEDICINE, INTERNATIONAL of North America. 2004. RESNA History. Arlington, VA: The Rehabilitation Engineering and Assistive Technology Society Rehabilitation is used as a term for different medical, of North America. Retrieved April 5, 2004 (www.resna.org). psychological, social, and vocational measures that aim to support a person with disability to regain as ᨘ normal a life as possible. The ultimate goal for reha- REHABILITATION ENGINEERING bilitation is that the person will participate actively SOCIETY OF JAPAN (RESJA) in life roles of importance for that person. This entry concentrates on rehabilitation within medicine, with The Rehabilitation Engineering Society of Japan special emphasis on the situation in Europe. (RESJA) was established in 1986 and is composed of approximately 1,000 members. RESJA’s membership GENERAL ASPECTS AND DEFINITION is interdisciplinary, including engineers, occupational therapists, physical therapists, speech therapists, For the development of rehabilitation, the concepts educators, physicians, and consumers. first given by the World Health Organization (WHO RESJA organizes an annual conference, the 1980) in the International Classification of Impair- Japanese Conference of Advancement on Assistive and ments, Disabilities, and Handicaps (ICIDH) and Rehabilitation Technology (JCAART). The conference recently (approved 2001) in the International Classifi- provides a forum for the presentation of approximately cation of Functioning, Disability, and Health (ICF) 700 papers. An additional dissemination avenue is the have played a great role. Rehabilitation works on all Journal of RESJA, which is issued four times each year. levels in ICF (body function and structure, activity, RESJA is organized around 10 special interest and participation), also taking environmental factors groups (SIGs). Current SIG topics include the follow- into account. Impairments (the level of body function ing: automobile, communication, functional electrical and structure) can be treated to reduce or eliminate the stimulation, house design, seating, self-help devices, reduction in function by pharmacological means, wheelchairs, special education, transfer aids, and training through physiotherapy, occupational therapy, devices to prevent pressure sores. speech therapy, neuropsychological means, and so on, RESJA interacts with its sister organizations—the or they can be compensated for by assisted devices. Rehabilitation Engineering and Assistive Technology Rehabilitation aims at reducing the activity limitations Society of North America (RESNA), the Association (the level of the individual) by training, changing an for the Advancement of Assistive Technology in activity pattern (e.g., more appropriate way to handle Europe (AAATE), and the Australian Rehabilitation objects for a person with joint disease), and using assis- and Assistive Technology Association (ARATA)— tive devices and modifications of the environment (e.g., to advance assistive technology use worldwide. On housing adaptation). Finally, the aim is to increase par- August 26, 2000, the leaders of the four organizations ticipation, where social and psychological factors play signed the Tokushima Agreement to promote exchange a great role and should include attention to the attitudes of information and collaboration. of relevant other persons. Emphasis may be placed dif- —Glenn Hedman ferently on those three levels, depending on the phase and actual goal of rehabilitation, but all should always See also Rehabilitation Engineering and Assistive Technology be kept in mind. In the early acute stage, measures to Society of North America (RESNA). reduce impairment and limitation in basic daily activi- ties may dominate, whereas in the more subacute stage Websites of rehabilitation, reduction of activity limitation in a Rehabilitation Engineering Society of Japan, http://www.resja.gr .jp/ broader sense may be the dominant goal. The need for 1368———Rehabilitation Medicine, International treatment of specific body functions (impairments) The term physical medicine is still used in some should therefore be analyzed in such a perspective. In countries but represents a slightly different activity a later stage, after an individual leaves the hospital, from rehabilitation medicine. In some countries, such social aspects related to family life, occupation, hob- as in the United States, a specialist in physical and reha- bies, and leisure activities will be given an increasing bilitation medicine is named a physiatrist. importance for the rehabilitation efforts. Rehabilitation measures and programs can be Definition divided into different categories: The speciality will hereinafter be referred to as • separate rehabilitation measures, which may or may physical and rehabilitation medicine (PRM). So what not be coordinated, such as physiotherapy, occupa- is PRM? The European Union of Medical Specialists tional therapy, and speech and language therapy; (UEMS) section of PRM has defined it as follows: • coordinated rehabilitation within different clinical specialities, but without participation of a clinical PRM is an independent medical specialty concerned specialist in rehabilitation medicine; with the promotion of physical and cognitive func- • team-based rehabilitation in specialized rehabilita- tioning, behaviour, quality of life (activities and tion units (clinics) and led by a specialist in rehabil- participation) and with the prevention, diagnosis, itation medicine (in the United States, a physiatrist). treatment and rehabilitation management of people with disabling medical conditions and co-morbidity The activity of the rehabilitation team should across all ages. essentially be goal oriented and should take account Specialists in PRM have a holistic approach to of the preferences and goals of the patient, who is an people with acute and chronic conditions, examples active participant in the rehabilitation process. of which are musculo-skeletal and neurological dis- orders, amputations, pelvic organ dysfunction, cardio- Many medical disciplines have a rehabilitation respiratory insufficiency and the disability due to component within their work, but of special note are chronic pain and cancer. psychiatry, rheumatology, cardiology, neurology, ortho- PRM specialists work in various facilities from pedics, and respiratory medicine. Specialized clinics acute care units to community settings. They use are established by specialists in physical and rehabili- specific diagnostic assessment tools and carry out tation medicine to address the needs of special groups treatments, which include pharmacological, physical, of patients, where a broad and more timely approach technical and educational and vocational interven- is required. Thus, the medical speciality that is most tions. Because of their comprehensive training, they greatly concerned with the medical rehabilitation of are best placed to assume responsibility for the activ- physically disabled people is physical and rehabilita- ities of multi-professional teams in order to achieve tion medicine. It goes under a variety of names in dif- optimal outcomes. ferent countries, reflecting different priorities: There are variations from country to country, but Rehabilitation medicine: Hungary, Ireland, Luxembourg, the common aspect is the relationship of the rehabili- the Netherlands, Poland, Portugal, Sweden, United tation physician to other members of the multiprofes- Kingdom sional team. This is quite different from that found in Physical and rehabilitation medicine: Official Title in acute medicine. the Union of European Medical Specialists (UEMS) and also in France, Germany, Denmark, Greece, Switzerland Aims of Physical and Rehabilitation Medicine Physical medicine and rehabilitation: Austria, Belgium, The concepts in the ICIDH, published in 1980 Croatia, Czech Republic, Denmark, Estonia, Finland, by WHO, have made a great impact on rehabilitation. Greece, Italy, Latvia, Liechtenstein, Lithuania, Norway, However, the terms have changed in the recently Slovakia, Slovenia, Spain, Turkey, United States published ICF. The overall aim of rehabilitation is to Rehabilitation Medicine, International———1369 reduce or eliminate disability, as its definition in deterioration and complications have assumed greater ICF still applies. Rehabilitation is a precise activity priority. and is quite different from care and describes a goal- oriented activity. Similarly, it is quite different from General Structure in Europe “therapy,” which contributes to the rehabilitation process in individual recipients but may not always be The general structure of PRM services across required for everyone. Therapy and rehabilitation are Europe is fairly similar despite the differences not synonymous. between health care systems. PRM is recognized as a core service in each of the 19 member states of Europe Rehabilitation—WHO Definition. This is an active and the new associate members also adopt the same process by which those disabled by injury/disease principles. The names may be different from place to achieve a full recovery or, if full recovery is not pos- place, but the essential services appear in the follow- sible, realize their optimal physical, mental, and social ing form. potential and are integrated into their most appropriate environment. General Rehabilitation: Characterized by health professionals working within their professional roles in relative isolation from others. Health-Based Rehabilitation: Working Definition. This dedicated, designated, multiprofessional activity, Special Services: Dedicated areas of working, where which takes an active and holistic approach to care individual professionals have varying degrees of and is centered on the individual needs of patients and contact with others involved in the rehabilitation process—for example, continence and tissue viabil- carers, starts in earnest when the patient is medically ity services, dysphagia services, and so on. For stable and continues through community reintegration specific conditions, such as multiple sclerosis, and beyond, is goal oriented, and is easily and appro- Parkinson’s disease, and back pain, individuals may priately accessible. have a general clinical role working within a team and an extra responsibility to these respective Rehabilitation Medicine. This is a consultant subacute patients. speciality concerned with the secondary and tertiary Specialized Rehabilitation: Dedicated multidisci- management of the medical aspects of physical dis- plinary or interdisciplinary rehabilitation, where the ability (especially in the fields of neurological and team meets to define the rehabilitation objectives and musculoskeletal disease, trauma, and amputation), activity and professionals work together to achieve which require specialist rehabilitation expertise. the aims of the process. It is often inpatient based, but there are now a number of community teams working Rehabilitation Therapy. This includes treatment pro- in this way. vided by, or under the direction of, nurses, physio- therapists, occupational therapists, speech and The numbers of specialists in PRM across Europe language therapists, clinical psychologists, dieticians, varies considerably, and this depends to a large extent chiropodists, and so on. They each have their profes- on geography. sional philosophies, but space prevents from describ- ing each. Training in PRM Medical practice is based on the concept of arriving Specialist training covers a four- to five-year course at a diagnosis and providing a treatment that aims to in UEMS member states. The route to start training is cure the patient. In the context of medical and social slightly different in each country, but, despite different progress and the increasing importance of degenera- entry points to a four- to five-year training program, tive diseases in medical practice, the relatively new the curriculum has much similarity across the con- concepts of improving quality of life and preventing tinent. The European Board of PRM has the task of 1370———Rehabilitation Medicine, International harmonizing specialist training across Europe and has conditions require designated specialist services, and taken on the following roles. because they will not be available in each locality, an access network is necessary. • European examination for recognition of special- ist training • Continuing professional development and medical Acute Services education with five yearly revalidations As the pressure on acute facilities increases, reha- • Recognition of the European trainer and training bilitation in acute hospital beds should be available to unit through site visits achieve optimal outcomes, reduce complications and disability, and allow a clear pathway for efficient ongo- The eventual aim of this harmonization is to produce ing rehabilitation after discharge. The barriers to achiev- specialists who can work across European health care ing this are as follows: systems and allow national medical authorities/employers the knowledge of the training content and experience • lack of recognition by the acute care team of what of the specialists working for them. the specialist center can offer in addition to that provided by the acute physician/surgeon, • lack of access (availability of services, waiting time DELIVERY OF to enter rehabilitation), REHABILITATION SERVICES • financial restrictions (hospital/clinician/insurance). With such a burden of physical disability in the popu- lation, adequate and equitable delivery of health care Specialist Centers to the disabled population is clearly a major logistical Certain individual groups of both old and younger problem. Services provided in most countries are adults and children require dedicated centers/services patchy, fragmented, and overall inadequate. Facilities for specialized rehabilitation, and the standards pro- are needed for both inpatients and outpatients, and the posed by the British Society of Rehabilitation Medicine criteria for inpatient rehabilitation are as follows: on the number of required beds per district for rehabil- itation medicine only account for younger adults. These a. patients requiring 24-hour nursing and medical centers need both inpatient and outpatient rehabilitation supervision for their rehabilitative needs; facilities, which are separated from acute beds and b. patients with neurological and locomotor disor- long-term care facilities for the elderly. ders who have the capacity for, require, and will benefit from rehabilitation (i.e., patients in whom the evidence shows that active intervention Disease-Specific Clinics improves function and life satisfaction or prevents Specific clinics and activities have been developed deterioration); c. severely disabled patients, whose needs can for managing certain long-term conditions, such as mul- only be met by a multiprofessional team prac- tiple sclerosis, epilepsy, Parkinson’s disease, or inflam- ticing interdisciplinary rehabilitation; matory joint disease. In addition, back pain services have d. patients with complex needs (i.e., requiring been set up, and these clinics certainly have the advan- more than two professionals working in a team); tage of providing an expert multidisciplinary approach, e. some very severely disabled patients with little which is familiar with the specific problems of that dis- hope of improvement in personal functioning order. The team can supply information and counseling but who require assessment and appropriate support and can act as a focus for self-help groups. equipment and whose families require educa- tion for caring purposes. Community Rehabilitation Teams A number of basic core services are required in Follow-up from the acute hospital-based rehabilita- each area. Logistics demand that rare and complex tion team is essential for many people with significant Rehabilitation Medicine, International———1371 disabilities to provide continuity of support and access artificial barriers between the participating agencies. to appropriate health resources after discharge. A Cross-representation is necessary at both the strategic community team can still work in a multi- or an inter- and operational levels, and disabled people not only disciplinary manner in the same way as the acute need to be involved but also should lead when and rehabilitation team but tends to concentrate on chang- where it is appropriate. There is no single preferred ing abilities in activities and participation rather than model to suit every location, and each will depend on on the relationship between impairments and abilities. the local facilities and assets of the participating indi- A team is effective for a population of about 120,000. viduals. However, all new services should take into Teams may be peripatetic, based in health/community account the views and advice of users and disabled centers or in community hospitals. Their essential people’s groups on disabled living (Living Options prin- aims are to ensure the well-being of disabled people ciples and European Year for Disabled People 2003). in the community by organizing therapeutic interven- tions to ensure optimal outcomes following hospital stays and prevent hospital admissions. REHABILITATION RESEARCH—ACADEMIC BASE

Case Management Rehabilitation research is growing in activity and sophistication. However, randomized controlled trials Disabled people, particularly those with severe and are, to some extent, difficult to perform in this field, wide-ranging disabilities, will need a complex array but a recent increase in the publication of such studies of health and social services. The concept of case can be seen. There are now a lot of data about the management has been developed as a way of assisting effectiveness of rehabilitation, and what is now disabled people with the coordination of the necessary required are data on the value of rehabilitation through professional staff. Case management can include the cost-effectiveness studies, some of which are under following: way. Rehabilitation will also have a more solid theo- retical basis as the perspectives of fields such as neu- simple coordination within a single agency; robiology, applied physiology, and biomechanics coordination across agency boundaries; increasingly provide a background for rehabilitation. service brokerage, in which the case manager negoti- There is also an increasing use of modern and relevant ates with the key agencies on the client’s behalf; methods to treat ordinal scale data from various instru- ments to assess activity limitation, participation restric- budget-holding responsibility, where services can be purchased on behalf of the client from statutory bod- tion, quality of life, and perception of health—all very ies or other voluntary or private agencies. useful in rehabilitation research. —Anthony B. Ward and There have been very few controlled studies of Gunnar Grimby the efficacy of case management, which is widely practiced within the United States, Canada, and See also Assistive Technology; Case Management; Mobility Scandinavia. It may provide a better and more coher- Aids; Physical Medicine and Rehabilitation; Rehabilitation ent service, particularly for those who have a degree Engineering. of cognitive impairment who are unable to find their Further Readings own way through the maze of services. Fiedler, B. and D. Twitchin. 1990. “Living Options in Practice: A Framework for Action.” Project Paper No. 1, Prince of Wales Links with Other Agencies Advisory Group on Disability & Community Living Develop- ment Team King’s Fund Centre, London. Health-based rehabilitation goes hand in hand with Grimby, G., M. Nilsson, and B. Sjölund, eds. 2003. “Neurobiolog- social and vocational rehabilitation, and services need ical Background to Rehabilitation” [Special issue]. Journal both formal and informal means to break down the of Rehabilitation Medicine 35(Suppl. 41). 1372———Rehabilitation Psychology

“Model for the Organisation of a Community-Based colleges, and private practice. The focus of rehabil- Rehabilitation Service: Report of a Working Group of the itation psychology covers the lifespan from early Royal College of Physicians Committee on Rehabilitation childhood through late adulthood. Advocacy is an Medicine.” 1997. Journal of the Royal College of Physicians of London 31:503–505. important activity for rehabilitation psychologists as Shepherd, G. 1990. “Case Management.” Health Trends they seek to improve the life conditions for people 22:59–61. with disabilities and chronic illnesses; many have “Standards to Clinical Practice: Some Guidelines.” 2000. Clinical sought to develop and promote legislation such as the Rehabilitation 14:468–480. Americans with Disabilities Act of 1990. Turner-Stokes, L., K. Nyein, and D. Halliwell. 1999. “The Northwick Clinical and counseling services provided by reha- Park Care Needs Assessment (NPCNA): A Directly Costable Outcome Measure in Rehabilitation.” Clinical Rehabilitation bilitation psychologists assist individuals to cope with 13:253–267. and adjust following the onset of chronic, traumatic, Ward, A. B. 2000. “Specialist Training in Britain & Europe.” or congenital injuries or illnesses. These conditions Archives of Physical Medicine and Rehabilitation include spinal cord injury; brain injury; stroke; ampu- 81:1242–1244. tations; neuromuscular disorders; medical conditions World Health Organization. 1980. International Classification with the potential to limit functioning and participa- of Impairments, Disabilities, and Handicaps: A Manual of Classification Relating to the Consequences of Disease. tion in life activities such as cancer, AIDS, multiple Geneva, Switzerland: WHO. sclerosis, or limb weakness; chronic pain; congenital ———. 2001. International Classification of Functioning, or chronic developmental disorder such as mental Disability, and Health. Geneva, Switzerland: WHO. retardation; chronic mental illness; alcohol and other drug abuse; impairments in sensory functioning; burn Websites injury; deafness and hearing loss; and blindness and Union Européenne des Médecins Spécialistes (UEMS) Section vision loss. Many of these impairments are com- of Physical & Rehabilitation Medicine, http://www.euro- pounded by cultural, educational, and/or other disad- prm.org vantages and social stigma. Psychological services often have the goal of reducing the consequences of impairment, activity ᨘ REHABILITATION PSYCHOLOGY limitations, and societal participation restrictions. Persons served are engaged as active partners in Rehabilitation psychology is a specialty area of prac- the rehabilitation process by taking into account the tice that applies psychological knowledge and under- person’s preferences, needs, and resources. Following standing on behalf of individuals with disabilities and the World Health Organization’s International society through research, clinical practice, teaching, Classification of Functioning, Disability, and Health public education, development of social policy, and (ICF), rehabilitation psychologists have helped advocacy. Rehabilitation psychologists participate in a address personal factors affecting the ICF domains of wide range of activities, including clinical care and impairments, activities, and participation. They do direct service, program development, research, educa- this by addressing neurocognitive status, mood and tion, administration, and public policy. emotions, desired level of independence or inter- They work in acute care hospitals and medical dependence, freedom of movement, self-esteem and centers, inpatient and outpatient physical rehabilita- self-determination, subjective view of capabilities tion units, nursing homes and assisted living centers, and quality of life, and satisfaction with achieve- and community agencies serving people with specific ments in specific areas such as work, social relation- types of disability or chronic illness (e.g., vision loss ships, and community access. Rehabilitation and low vision, cerebral palsy, multiple sclerosis, psychologists consider the influence of culture, eth- deafness). Their employers include private facilities nicity, gender, residence and geographic location, and government facilities such as Veterans Adminis- visibility and assumption of disability on attitudes, tration hospitals and centers, industry, and universities, and available services when planning services. Also Rehabilitation Psychology———1373 explored are environmental barriers to participation and newsletter; it also sponsors sessions relevant to and activity performance, including accommodations rehabilitation psychology research and practice at and adaptations in existing structures or materials and the annual APA conference held annually in August, a the use of assistive technology and personal assistance midwinter meeting, and other education venues for psy- services. chologists and other health professionals. Several excel- Families, primary caregivers, and other significant lent textbooks are available on the general topic of people in the individual’s social life and community rehabilitation psychology, as well as books on areas of are valued and engaged in rehabilitation activities specialization within this field. so as to assist the individual with disability or chronic —Allen Heinemann illness achieve optimal physical, psychological, and interpersonal functioning. See also Physical Medicine and Rehabilitation; Psychiatry; Rehabilitation psychologists work within a wide Psychology. variety of health care settings and with a broad range of persons with varying disabilities and illnesses. Note: Information for this entry was drawn from the description Some specialize in a particular area of clinical practice, written by Marcia Scherer, Kelly Blair, Martha E. Banks, Bernard while others’ practice is broader. Interdisciplinary Brucker, John Corrigan, and Stephen Wegener and appears at http://www.apa.org/divisions/div22/RPdef.html. teamwork is a hallmark of rehabilitation psychology practice across settings and the area of specialization. Further Readings Rehabilitation psychologists are respected and provide Antonak, R. F. and H. Livneh. 1988. The Measurement of Attitudes services within existing networks of biological, psy- toward People with Disabilities: Methods, Psychometrics, chological, social, environmental, and political envi- and Scales. Springfield, IL: Charles C Thomas. ronments to assist the persons served in achieving their Banja, J. D. and M. Rosenthal, eds. 1996. “Ethics” [Special issue]. rehabilitation goals. Consultation regarding disability NeuroRehabilitation: An Interdisciplinary Journal 6(2). and health issues is another important professional role Bruyère, S. M. and J. O’Keefe, eds. 1994. Implications of the Americans with Disabilities Act for Psychology. of rehabilitation psychologists. Attorneys, courts, gov- New York: Springer. ernment agencies, educational institutions, corporate Caplan, B. 1987. Rehabilitation Psychology Desk Reference. facilities, and insurance companies are the recipients Aspen, CO: Systems Corporation. of these services. Cushman, L. A. and M. Scherer, eds. 1995. Psychological Rehabilitation psychologists complete doctoral Assessment in Medical Rehabilitation Settings. Washington, degrees in psychology and have had extensive predoc- DC: American Psychological Association. Encyclopedia of toral and postdoctoral training in health care settings. Dell Orto, A. E., and R. P. Marinelli, eds. 1995. Disability and Rehabilitation. New York: Macmillan. Rehabilitation psychologists who provide clinical Eisenberg, M. G., R. L. Glueckauf, and H. H. Zaretsky, eds. 1999. services are usually required to be licensed to provide Medical Aspects of Disability: A Handbook for the Rehabilita- services in their state of practice and to receive reim- tion Professional, 2d ed. New York: Springer. bursement for services from health insurance payers. Frank, R. G. and T. Elliott. 1999. Handbook of Rehabilitation The American Board of Professional Psychology Psychology. Washington, DC: American Psychological (ABPP) recognizes rehabilitation psychology as a spe- Association. Glueckauf, R. L., R. G. Frank, G. R. Bond, and J. H. McGrew. cialty area of practice within psychology; the board’s 1996. Psychological Practice in a Changing Health Care definition of rehabilitation psychology was an impor- System: Issues and New Directions. New York: Springer. tant source in the development of this description. Neff, W. S. 1971. Rehabilitation Psychology: Proceedings. Rehabilitation psychologists belong to many profes- Washington, DC: American Psychological Association. sional organizations relevant to their area of practice Pollard, R. Q. 1996. “Professional Psychology and Deaf People: American Psychologist and specialization. The major organization representing The Emergence of a Discipline.” 51(4): 389–396. rehabilitation psychology is the American Psychologi- Scherer, M. J. 1996. Living in the State of Stuck: How Technology cal Association (APA), Division of Rehabilitation Impacts the Lives of People with Disabilities, 2d ed. Psychology. Division 22 publishes a scholarly journal Cambridge, MA: Brookline. 1374———Rehabilitation Robots

Wright, B. A. 1983. Physical Disability: A Psychosocial Another promising area of research is at the cutting Approach. New York: Harper & Row. edge of neuroscience: implanting computer chips directly Yuker, H. E., ed. 1988. Attitudes toward Persons with Disabilities. into the brain so that all a user has to do is “think” a New York: Springer. command and the robot will do it. This sounds like Websites science fiction, but researchers have recently shown that monkeys can be trained to move a robotic arm in American Psychological Association, Division of Rehabilitation Psychology, http://www.apa.org/divisions/div22 just this fashion—through thought alone. The main issue limiting therapy robots is that researchers do not understand what exactly the nervous ᨘ REHABILITATION ROBOTS system needs to adapt. Hard work by the patient is important, but what should the robot do? Researchers There are two main types of rehabilitation robots. The are developing therapy robots that assist in movement, first type is an assistive robot that substitutes for lost resist movement when it is uncoordinated, or even limb movements. For example, the MANUS robot arm make movements more uncoordinated in an attempt to attaches to a wheelchair. The user controls MANUS trick the nervous system into adapting. Therapy robots using a chin switch or other input device. This process will become more prevalent as researchers figure out is called “telemanipulation” and is similar to an astro- the best training techniques. Therapy robots will also naut controlling the space shuttle’s cargo bay robot arm likely play a role in assisting the nervous system to from inside the shuttle’s cockpit. Powered wheelchairs regenerate appropriate neural connections following are another example of teleoperated, assistive robots. stem cell and other medical treatments. The second type of rehabilitation robot is a therapy Finally, the distinction between assistive and therapy robot, which is sometimes called a “rehabilitator.” robots may fade in the future. Imagine wearing a robotic Neuroscience research over the past 20 years has exoskeleton that helps you to get tasks done but also shown that the brain and spinal cord retain a remark- teaches you to get better at doing those tasks. Such a able ability to adapt, even after injury, through the use rehabilitation robot will help people with disabilities of practiced movements. Therapy robots are machines by gradually making itself obsolete. or tools for rehabilitation therapists that allow patients —David J. Reinkensmeyer to perform practice movements aided by the robot. The first robot used in this way, MIT-Manus, assisted See also Assistive Technology; Rehabilitation Engineering. patients with stroke in reaching across a tabletop if Further Readings they were unable to perform the task by themselves. Patients who received extra therapy from the robot Lees, D. and P. Lepage. 1994. “Will Robots Ever Replace improved the rate of their arm movement recovery. Attendants? Exploring the Current Capabilities and Future Potential of Robots in Education and Rehabilitation.” Another recent therapy robot, the Lokomat, supports International Journal of Rehabilitation Research 17(4): the weight of a person and moves the legs in a walk- 285–304. ing pattern over a moving treadmill, with the goal of “MIT-Manus Robot Aids Physical Therapy of Stroke Victims.” retraining walking after a spinal cord injury or stroke. 2000. Retrieved June 11, 2005 (http://web.mit.edu/newsoffice/ Assistive robots are not yet widely available because tt/2000/jun07/manus.html). of limited functionality and cost. Teleoperating a robot Reinkensmeyer, D. J., J. L. Emken, and S. C. Cramer. 2004. “Robotics, Motor Learning, and Neurologic Recovery.” arm to pick up a bottle of water and bring it to the Annual Review of Biomedical Engineering 6:497–525. mouth is time-consuming and requires an expensive robot. Robot arms on wheelchairs will become more common as engineers build more intelligence into ᨘ RELIGION them. Making robots understand voice commands, rec- ognize objects, and agilely manipulate them in the “real A religion is a system(s) of belief(s) and ritual through world” is a cutting-edge research area in robotics. which people relate to and express their experience of Religion———1375

God(s), the sacred or divine dimensions of life, and leaders do not live with disability, and few cite their understandings of the meaning of life. Religion sermons or teachings on disability and religion. There includes the practices whereby people live out their are also many different understandings, doctrines, faith, and both historically and today, it is a major force beliefs, and approaches about many issues within a in the lives of cultures and civilizations. Hence, people specific religious tradition, including disability. with disabilities and their families are influenced Hence, even if there were a central understanding by those religious traditions and systems. In turn, the or practice within a given tradition about disability, experience of impairment, as well as its social expres- it does not mean that practice would be uniform. sion, disability, affects religious understanding and Many different forces and experiences shape attitudes practice as people with and without disabilities seek to and practice. understand the meaning of disability, God’s relation- ship to disability, and the subsequent understand- ings of practice and relationship to which a belief and EXPLORING RELATIONSHIPS tradition calls them. AND EMERGING RESEARCH The intersection of disability and religion has Despite this, the relationship between religious beliefs complex historical, practical, scientific, and theologi- and practice and disability (or disabilities) is an area cal dimensions. Disability is paradoxically often cen- for rich and powerful exploration and research. tral to religion (such as the brokenness of God in Having a disability or close relationships with people Christianity) yet has, in large part, been overlooked in with disabilities raises many questions about the systemic research and the study of religious systems. meaning of life, the nature of suffering, the role of A critical understanding assists in understanding the God and divine purpose, difference and community, historical treatment of disability and its intersection and understandings of individual rights and justice. with culture and faith traditions. Religion can be a Religion and faith shape personal and communal force for both good and ill regarding disability. identity, help people to find meaning and purpose regarding core life questions, express understanding EXPLORING THE of the sacred/divine, and guide ethical practice. COMPLEX RELATIONSHIP Religious traditions and faiths can sustain people in times of crisis, through belief systems, practice, and a There is no one generalized definition or explana- wide variety of supports and services within one’s reli- tion of the relationship between religion and religion. gious community (church, synagogue, mosque, etc.). While religion is a major force in societies, many other As already stated, these can effect change, both for factors influence people. Adherence to, or interpretation good and ill. of, a faith tradition is also shaped by numerous other Religions can support a wide range of beliefs forces that influence personal and social understand- and practices in societies and cultures. This is an area ings of disability. of emerging research in both religious and secular dis- Religion and faith can endorse and enshrine social ciplines—for example, strategies shaping inclusive/ attitudes and practice or challenge them. There accessible faith communities or understandings of how are many examples of ways that faith and religion faith and religion affect attitudes and coping skills have been a support to people with disabilities and within families and people with disabilities. There is a their families. Likewise, there are many examples of growing impact of the disability rights movements on its use to exclude, dehumanize, or harm people with religious understandings and practice. This relation- disabilities. ship illustrates how disability may not have played Certainly, there is no central understanding of an obvious role in its early development of central how religious tradition or faith relates to disability. beliefs, practices, or sacred texts of most religious Reflecting dominant power relations, in faith tradi- communities, yet core beliefs and practices (or first tions, disability is not a major focus. Most religious principles) can be used to address these issues. Two 1376———Religion further areas of research/study arise. First, scholars disability as misfortune, a central thread in many faith and practitioners can reexamine religious texts and traditions is that disability is a sign of punishment, traditions via social, cultural, and rights understandings moral deviance, or some kind of fallen state. of disability, helping shape new appreciation of dis- Thus, in Christian traditions, a disability such as ability in tradition. Second, disability stories/experience epilepsy might be seen as demonic, or the control of can shape belief and revised practice within a given an evil spirit, as in the story of the Gerasene demoniac religious community, often in the name of inclusion or in the Gospel of Mark. In Judaism, the exclusion of acceptance. some forms of disability from religious practice or community has often been quickly interpreted as a sign of divine disfavor or as the result of punishment CORE RELIGIOUS QUESTIONS or sin (“The sins of the parents are visited upon the A common thread in religions about disability is the children. . . .”). In Islam, disability has been inter- human search for meaning in the world. There are also preted as a misfortune sent by Allah or as a challenge common questions about life in different faith tradi- to the individual and his or her faith. In Hinduism tions and similar forms of exploration. Comparative and Buddhism, disability has been interpreted as religion scholars approach those in numerous ways. something fearful, a punishment for a misdeed in a Two basic dimensions have already been noted: belief former life, or one’s karma. People with disabilities and practice. and families across many faith traditions can recount Four questions/dimensions identify the ways stories of the ways that blame, fault, or sin has been religions and faith traditions understand and relate to ascribed to them by others, with the added weight of disability: God’s will and punishment. Disability has also been portrayed as a sign of evil 1. What is the belief about the source of disability or fallen state, with its absence portrayed as a sign of (i.e., why it happened) and the role of God or the healing or of paradise. Thus, people with disabilities divine? struggle with common understandings of the healings 2. How does that understanding of source affect by Jesus in which their disability is cured, or their the understanding and identity of a person with capacity for healing is equated with the depth of disability? their faith. In Zoroasterism, there was a core vision of a perfect world in which there was no disability or 3. What, then, is the role and purpose of the person death, a vision with similarities in heaven in other reli- with disability in society? In other words, “what gions. The contrast of a perfect, disability/disease/ am I called to do?” suffering-free society is central to the founding story 4. What is the role of the community of faith—that of Buddhism, where the young Buddha, raised in a is, what are others called to do, out of their faith, world free of suffering, encounters it for the first time toward persons with disabilities? as he moves out of the castle into the world. His life, and the world’s, is forever changed. EXPLORING WHY: But there are also interpretations within major DIVINE ROLE AND PURPOSE faith traditions that see disability as more neutral, as a challenge to the individual and his or her soul. Going All religious traditions struggle with asking and answer- further, in Judaism, Christianity, and Islam, there is a ing the question “Why?” regarding suffering, death, strong belief in the sacredness of every life, and in and difference/deviation. The answer is usually in Eastern religions, there is more focus on the impor- terms of divine origin (God caused it or sent it) and/or tance of the connection of the individual to the com- personal responsibility (my fault or someone else’s). munity and the whole of creation. A famous text in the Given that most faith traditions envision the divine in New Testament (John 9) disconnects the equation of charge of events in life and mostly have understood disability with sin when the disciples ask Jesus why a Religion———1377 man was born blind. The disciples asked whether it understood in terms of physical origins, just like other was the fault of the blind man or his parents. Jesus’ conditions and differences. Other religious traditions response was, “Neither . . . he was born blind so that and understandings have claimed the “specialness” of God’s works might be revealed in him.” That captures people with disabilities in divine creation. Whether that an understanding of the role of people with disabilities comes out as “angels unaware” or “inspiring example,” in wider society, in which religious traditions see the it is the opposite end of the spectrum of religious inter- disability as an opportunity to teach lessons to others. pretation of misfortune as either evidence of bad/evil In Buddhism, the question is not whether God caused or good/blessing. Some theologians have also begun to the disability but how one’s mindfulness and spiritual explore the question of how disability relates to our discipline might shape one’s response. understanding of the divine (e.g., Eiesland 1994). The importance of historical, exegetical, and theo- logical research in this area is shown by the ways that DISABILITY AND IDENTITY: popular religious understandings equating disability RELIGIOUS DIMENSIONS with sin or punishment by God are in fact challenged by a more disciplined exploration of religious texts. The spectrum from “evil/demonic” to “good/special” Religious credence has often blessed or enshrined also reflects disability as a major characteristic shap- social attitudes, even perpetuating rather than chal- ing and defining personal identity. Disability is defect, lenging them. Yet careful research begins to note, for and thus the person is defective. The individual or example, that Jewish understandings of disability did family becomes the bearer of whatever religious not equate it with deviance. Disabled people continued interpretation is placed on the disability, ranging from to be part of the community. The blind Levite could demonic, curse, and punishment to special and holy. not be a priest because one of the functions of a priest Disability is the fault of the individual/family, the was to examine sacrifices for the lack of blemish. A fault of a former incarnation, or God’s will/design. disability did not keep a person from being a major Disability thus controls and is a person’s identity, religious leader (e.g., Moses and his speech defect, rather than being just one of many characteristics. Jacob and his limp, and Paul and his “thorn in the Thus, people with disabilities were seen within reli- flesh”). Religious leaders in many traditions have been gious traditions as they were within society, as “the blind or had other disabilities that were thought to blind,” “the lame,” “the possessed,” the “idiot,” “the imbue them with special vision and insight. A careful deaf,” and so on. exploration of the understandings of disability as karma Social and religious identities and roles are thus inter- can reframe that understanding of disability as punish- twined. Evil and thus shunned or avoided, people with ment for a sin in a former life to a belief that, in a former disabilities were often scapegoats for religious questions life, one might have mistreated a person with a disabil- and social worries. Social and economic factors com- ity or been guilty of pride or arrogance, and thus this bine with negative attitudes to create structural disad- current disability is a time for rehabilitation, a necessary vantage. In some societies, that led to the religiously corrective stage in the journey of one’s soul. sanctioned practices of killing infants with severe dis- Largely nondisabled accounts of divine purpose abilities. In others, identity meant a life as “beggar,” regarding suffering led to understandings of disability with the expected religious custom and behavior of as punishment or evil when the divine is understood as supporting those who were weak, a feature in Judaism, all powerful or in battle with other gods (demonic) or Christianity, Islam, and Eastern religions. when disability is interpreted only as misfortune and The opposite is also true when identity was seen suffering. In more recent times, as science and other as “special” or “holy.” Those traditions ranged from disciplines have shaped new religious understanding, practices of having people with disabilities as jesters religious leaders such as Rabbi Harold Kushner (also a in courts, or collected by royalty for entertainment, to parent of a child with a disability) have questioned beliefs that a person with a disability may have a spe- whether God is all-powerful. Disability begins to be cial ability and capacity to reveal the divine. As will 1378———Religion be noted later, in some Eastern religious and cultural the giftedness, value, limitations, vulnerabilities, and traditions, people with various disabilities were call of every person and community. expected to develop particular gifts, such as becoming musicians or storytellers. In the Christian tradition, A CALL? THE ROLE AND PURPOSE the “deaf” shall in fact “hear,” the “blind” see, and “last” OF DISABILITY be “first.” In contrast to an either/or spectrum of identity, The purpose of life is a central theme in all faith tra- many religions also affirm the value of each person. In ditions, with wide variation. For some, it is to follow Judaism, all humans are a disclosure of the divine, an individual call, to be a disciple in the Christian tra- each created “in the image of God.” All life has value. dition, to continue learning in Jewish circles, to keep All life is a gift. All life has strengths and weaknesses. seeking truth in Islam, to move toward mindfulness Christianity is full of stories of Jesus recognizing and understanding in Buddhism, and so on. The sense and affirming the humanity of each person and using of vocation, or following the purpose of one’s life, has the gift of healing not only to remove a disability but been much proscribed for people with disabilities also to overcome projections of sin and punishment by others. Thus, one might ask, was the role for people and restore a person to the community. In Islam, all with disabilities often that of beggar because of their creation is to be honored. Allah’s measure of worth for disabilities—that is, was that the only thing they were a person does not depend on physical attributes or allowed to do? Or, conversely, we might wonder how achievement but on spiritual maturity and develop- social conditions and poverty contribute to disability ment. Thus, for example, Islam was one of the first over time, as they do today, and thus prescribe roles faiths to see deaf sign language as valid social and from another direction. This is one area where the religious communication. social and contextual understandings of disability need Hence, in all major faiths, there are affirmations profound study and reflection in faith traditions. of the worth and value of each person. However, Many faith traditions also have affirmed that people evidence of disablism, as well as an illustration of the with disabilities face the same obligation to obey the way that religious attitudes both shape and are shaped divine and practice their beliefs as anyone else, with by social attitudes and understanding, is found considerations taken for their disabilities. In Judaism, when the language and terms of disability are used as the person with a disability was obliged to observe the metaphorical descriptions of defective faith and char- Sabbath and, if a man, could be counted in the minyan acter. For example, in the Qur'an, people could be for a worshipping community. People with disabilities deaf to the law of Allah or blind to the true path. Lack could not be priests, but in Leviticus, only Levites of faith could be described in terms of disability, and could be priests, and Levites with disabilities could disability was then seen and interpreted as a lack still eat the food in the temple. In many faiths, rites of of faith or evidence of wrongdoing. There are many passage could be adapted for people with various forms of diminishment found in disability labels, forms of disability. A fascinating debate in early Islam with their negative meanings to describe “nondis- was about whether people with intellectual disabilities abled” people whose faith or practice was considered could inherit family resources. That gave rise to some inadequate, wrong, or defective. Yet the ways that of the first guardianship provisions, as well as a people with disabilities have been treated by religious debate that said to take away a right to inherit and the people, communities, or societies can also be used as right to make a mistake like anyone else was worse examples and metaphors of faith that is righteous and than losing a family fortune. just. In Islam, if one could not make a living because As disability is increasingly seen as one part of of a disability, then one could appeal to Allah and a person, with difference an expression of human the community for justice, not necessarily charity, diversity rather than disease, there are new frameworks because if Allah deprived one of the ability to earn, from which to explore the religious understandings of then it was the duty of everyone to give that person his Religion———1379 or her due. People with disabilities were exempt DISABILITY AND from military service but could serve if they wanted. COMMUNITY RESPONSIBILITY There was no blame for the lame or blind if they could not participate in other duties, but everyone should All of the major faith traditions call for people to prac- still respond to the call of God as much as they can. A tice faith in relationship with others, calling for people Christian understanding of people with intellectual to be compassionate to others in pain, suffering, disabilities as “holy innocents” often exempted them or want. In Christianity and Judaism, it is called the from any responsibility and thus denied them a capac- Golden Rule. In Islam, charitable acts were not to be ity to learn. done out of pity but as a gesture of seeking good will In Far Eastern traditions, such as Daoism, there from Allah and, as noted, establishing justice by giv- are parallel understandings of the potential “special” ing people their due. Like Judaism, most faith tradi- role of people with disabilities but also philosophical tions have equivalent injunctions to the commands and religious understandings that “uselessness” could that others should not put stumbling blocks in the way have its own merits. The useless could outsmart the of the blind, make gestures at them that they cannot “useful,” who tend to get used up (e.g., by being killed see, or curse the deaf. One was not to mock or obstruct in wars). There are parallels here in Christian theology people with disabilities. Even if they did not know, that reflect on the power of the “powerless.” There God saw. These acts of charity, many of which formed are also Japanese traditions of guilds of professional the basis for social support agencies of all kinds musicians and storytellers who are all blind. throughout the centuries and certainly in modern In every major faith tradition, there are stories times, are just as much a part of religious traditions as of religious leaders with disabilities. We can legiti- are the stories and examples of religious shunning mately ask whether that “holiness” is ascribed to of people with various forms of disability because of them because of their “difference,” such as how they assumptions about sinfulness and punishment. learned how to deal with their situation and/or At another level, religious faiths have often used whether it was a function of living on the boundary the treatment of people with disabilities, along with between ordinary, divine, and/or demonic worlds. the treatment of the “weak,” “poor,” and “widows and There are also stories, with many different interpreta- orphans,” as a measure of the righteousness and char- tions, about key religious leaders being challenged by acter of the society. Jewish prophets, Islamic scholars a person with a disability, including the famous story and leaders, and Christian ministers and leaders have of Muhammad being rebuffed for turning away a all suggested that society is to be judged by, or will blind man, Jesus being called to task by people with succeed only through, the ways it treats the “least of disabilities, the young Buddha being profoundly these.” This has led in the past century to new forms changed by death and disease, and more. Yet in most of religious advocacy, service, and explorations of traditions, disability is an impediment to pursuing the ways that faith and religious communities have a religious vocation (e.g., admission to a monastic responsibility not just to care for but to include people order, seminary, or Holy Orders). This, again, is an with disabilities and their families. area of great change, as people with disabilities seek In many places in the world, the religious call to to break out of confining expectations and disabling charity or service is the major foundation for social environments. As religions seek more valued social services and supports for people with disabilities. In roles and callings for everyone, perhaps we also will others (sometimes the same places), modern under- recover traditions from the past in which every person standings of the abilities and rights of people with was expected or had to work simply because families disabilities are at odds with confining religious/social and communities could not afford for anyone to be attitudes. And in others, people with disabilities and idle. Religions may now help individuals and societies their families are challenging a system of services and to reevaluate the vocation or calling of a person with supports based on a charity model, whether it comes disability. from a “religious” or “secular” source. A major challenge 1380———Religion exists in many Western countries, where governments services. Since the International Year of Disabled may use charities auspiced by religious traditions to People in 1981, most major faith traditions have devel- deliver welfare, sometimes requiring service practices oped and disseminated position papers and statements that can marginalize clients. on faith and disability, such as the Roman Catholics Bishop’s Pastoral of 1979 or the World Council of A BRIEF HISTORICAL OVERVIEW Churches statement of 2003. In more recent developments, there have been The examples cited in this discussion of four dimen- partnerships such as the Accessible Congregations sions of religions and disability emerge from recent Campaign in the United States, coordinated between research into the historical intersections between reli- secular and religious support organizations. Christian gion and disability. Yet the narration and findings of and Jewish groups have developed strategies for that history depend in measure on what one looks for, accommodating religious education, worship prac- in terms of both positive and negative outcomes for tices, and rites of passage to include children and people with disabilities and their families. Researchers adults with any form of disability. There has been are beginning to uncover and reexamine old stories an explosion of written resources for Christian and and long-held assumptions, and they are finding ways Jewish networks, as well as the beginnings of scien- to overcome the fact that disability is not often a major tific research into the power and impact of spirituality theme in any religious creed, system, or scripture. and spiritual supports for people with disabilities and Recent scholarship points to ancient rulers in their families. One example is the national Space Eastern traditions whose religion and faith led them to to Listen research project by the Foundation for develop disability supports and service. Early Islam Learning Disabilities in the United Kingdom, which was one of the first traditions to recognize the rights of explores the role of spirituality in the lives of people people with disabilities, such as the deaf, and develop with intellectual disabilities. The Journal of Religion services for people with mental illness. Christian in Disability and Rehabilitation has developed hostels formed early community services for people into the Journal of Religion, Disability, and Health. with disabilities and were often connected in medieval Theologians and practitioners are exploring ways to Europe to the village or town cathedral. Jewish schol- include disability in theological education and to affirm ars and traditions explored “functional” definitions of the right of people with disabilities to be in training for disability long before it became a modern practice. religious roles. In the past century and a half, in North America and While admittedly Western in focus, this brief Europe and elsewhere, religious communities have overview points to the huge need for further cross- often been the impetus for new services and supports, cultural understanding and research. Some positive even if they were gradually taken over by public or developments highlighted are not meant to hide the secular professions and services. Since the 1950s, ways in which faith traditions and practice still often there has been growing attention to the intersection of oppress people with disabilities and their families. religion and disability, as religions developed special There are huge questions, such as why religious tradi- religious education programs for children with disabil- tions and communities have often been at the fore- ities, formed “deaf ministries” networks, and began to front of leadership in civil and human rights in North work on making religious buildings more accessible America but not so connected to the disability rights and religious communities more inclusive. Leaders movement. such as Helen Keller in the area of blindness, Dorothea It is clear that the intersection of religion and Dix in mental illness, and Harold Wilke in physical disability: disabilities, along with Jean Vanier and L’Arche com- munities in mental retardation and intellectual disabil- occurs at many different levels and dimensions, ities, have changed both religious understandings of from scholar through the intense believer to the public disability and spawned countless new practices and stereotypes of both religion and disability; Repetitive Strain Injuries———1381

includes many voices, backgrounds, and perspectives— Swinton, John. 2000. From Bedlam to Shalom: Towards a disabled and nondisabled—and a huge diversity of Practical Theology of Human Nature, Interpersonal Relation- religious understandings; and ships, and Mental Health Care. New York: Lang. ———, ed. 2004. Disabling Society, Enabling Theology: Critical affects many areas of “religious” life, such as wor- Reflections of Stanley Hauerwas’ Theology of Disability. ship, theology, ritual, ethics, understandings of tradi- Birmingham, NY: Haworth. tion and history, and reexamination of sacred text, Vanier, J. 1989. Community and Growth, 2d ed. Sydney, Australia: all with implications for individual and community St. Paul Publications. responsibility and practice. Webb-Mitchell, Brett. 1996. Dancing with Disabilities: Opening the Church to All of God’s Children. Cleveland, OH: United This complexity and diversity has vast room for Church Press. research and dialogue, the potential for all kinds of Wilke, Harold H. 1980. Creating a Caring Congregation: misunderstanding and oversimplification, and the Guidelines for Ministering with the Handicapped. Nashville, TN: Abingdon. possibility of building new bridges of understanding Williams, Bill. 1998. Naked before God. Harrisburg, PA: between people with and without disabilities, theo- Morehouse. reticians and practitioners from many disciplines, and followers of many different faiths. —Bill Gaventa and ᨘ REPETITIVE STRAIN INJURIES Christopher Newell Repetitive strain injuries (RSIs), cumulative trauma See also Developing World; Judaism; Middle East and the Rise of disorders, repetitive motion injuries, and work-related Islam; Representations of Disability, History of. musculoskeletal disorders are synonymous terms describing a broad range of injuries resulting from Further Readings excessive use of the spine, arm, hand, leg, or foot. Abrams, Judith. 2000. Judaism and Disability: Portrayals in In 1999, these injuries constituted 9 percent of the Ancient Text from the Tanach through the Bavli. Washington, injuries in U.S. private industry that resulted in lost DC: Gallaudet University Press. Eiesland, Nancy L. 1994. The Disabled God: Toward a Liberatory workdays. Wrist and hand problems accounted for Theology of Disability. Nashville, TN: Abingdon. the majority of the injuries and were the most costly ———. 1999. “Changing the Subject: Toward an Interfaith and the most disabling. Some health care systems no Theology of Disability.” Journal of Religion, Disability & longer accept a categorical diagnosis of RSI and insist Health 3(1): 55–62. on more specific diagnoses (e.g., tendonitis, neuritis, Fritzson, Arne and Samuel Kabue. 2004. Interpreting Disability: fascitis, myositis, carpal tunnel syndrome, thoracic A Church of All and for All. Geneva, Switzerland: WCC Publications. outlet syndrome, cubital tunnel syndrome, degenera- Gaventa, William, ed. 2002. Dimensions of Faith and tive arthritis, tendinosis, fibromyalgia, herniated disk, Congregational Ministries with Persons with Developmental focal hand dystonia, neuropathic pain). Disabilities and Their Families. New Brunswick, NJ: The Healthy tissues constantly turn over, repair, and Boggs Center–UAP. remodel, a maintenance function that requires good Gaventa, William and David Caulter, eds. 2002. “Disability and hydration, nutrition, and balanced loading and rest. Asian Culture and Beliefs: History and Service Develop- ment” [Special issue]. Journal of Religion, Disability and Normally, structural tissue damage postinjury acti- Health 6 (2/3). A collection of the papers of M. Miles, with vates a cellular cascade to mediate the inflammation responses by C. Miles, Pramila Balasundaram, and M. J. and and initiate repair. However, in patients with chronic Maya Thomas. repetitive strain injuries, cumulative loading can lead Newell, Christopher and Andy Calder, eds. 2004. Voices in to reduced perfusion (blood supply), poor axonal Spirituality and Disability from the Land Down Under: From transport of peripheral nerves and excessive tissue Out Back to Out Front. Birmingham, NY: Haworth. Nouwen, Henri J. M. 1972. The Wounded Healer. New York: inflammation, scarring, cell compression, matrix Image Books, Doubleday. degeneration, muscle fiber loss, and cell death. This can ———. 1997. Adam: God’s Beloved. New York: HarperCollins. lead to tissue discontinuity, biomechanical irritation, 1382———Representations of Disability, History of pain, and change in the type and organization of the therapeutic modalities, assistive devices, and/or collagen in tendons and ligaments that alters strength, therapeutic exercises, including learning-based senso- compliance, and flexibility. Thus, some individuals with rimotor training, are essential to recovery. RSIs can develop severe pain (with or without inflam- —Nancy Byl mation), others lose strength and endurance, and still others experience excessive fatigue, poor sensorimotor See also Fibromyalgia; Spinal Cord Injury. feedback, and painless loss of fine motor control, specifically at the work task (focal hand dystonia). Further Readings Repetitive microtrauma is usually classified by Barr Ann, Barbe, Mary. 2002. “Pathophysiological Tissue stage: Changes Associated with Repetitive Movement: A Review of the Evidence.” Physical Therapy 82(2): 173–187. Stage 1 = injury, probably inflammatory without Byl Nancy, Wilson Frank, Michael Merzenich, Marsha Melnick, Patrick Scott, Alison Oakes, and Alison McKenzie. 1996. pathological alterations “Sensory Dysfunction Associated with Repetitive Strain Stage 2 = injury associated with pathological Injuries of Tendonitis and Focal Hand Dystonia: A Compara- alterations tive Study.” Journal of Orthopaedic and Sports Physical Therapy 23:234–244. = Stage 3 injury associated with structural failure Byl Nancy, Michael Merzenich, and William Jenkins. 1996. (rupture) “A Primate Genesis Model of Focal Dystonia and Repetitive Stage 4 = injury meets criteria for stages 2 and 3 plus Strain Injury: I. Learning-Induced Dedifferentiation of the Representation of the Hand in the Primary Somatosensory other changes, such as osseous calcification Cortex in Adult Monkeys.” Neurology 47:508–520. Khan, Karim and Jill Cook. 2001. “Overuse Tendon Injuries: This classification system focuses on the soft tissue Where Does the Pain Come From?” Orthopaedic Division response to injury without consideration of secondary, Review, January–February, 8–195. aberrant central nervous system degradation. Risk Kraushaar, Barry and Robert Nirschi. 1999. “Current Concepts Journal of factors for RSI include occupation (e.g., heavy, stress- Review: Tendinitis of the Elbow (Tennis Elbow).” Bone and Joint Surgery 81A:259–278. ful schedules of repetitive hand use that demand high Rempel, David, Robert Harrison, and Steven Barnhart. 1992. levels of accuracy and progressive task difficulty), “Work-Related Cumulative Trauma Disorders of the Upper biomechanics (e.g., end range, forceful movements), Extremity.” Journal of the American Medical Association patterns of use (e.g., rapid, stereotypical, near simul- 267:838–842. taneous, alternating movements), personal health Websites (e.g., prior injury, disease status, hydration, fitness), psychosocial issues (e.g., emotional state, personality, Ergonome, http://www.ergonome.org/source/keymoves.htm perfectionism, anxiety, family support), and adminis- MouseKeyDo, http://mousekeydo.com trative factors (health care coverage, disability benefits, legal issues). These factors can affect the incidence of injury, the extent of the impairment, the potential for ᨘ REPRESENTATIONS OF recovery, and the magnitude of disability. DISABILITY, HISTORY OF Treatment initially includes rest from work, rest of the part, and anti-inflammatory medications. Ideally, Patterns of the historical representation of disability intervention should also address prevention, including in literary, artistic, and visual media cannot be general- ergonomic modifications, decreased forceful repeti- ized. This is due to the fact that while all cultures have tion, aerobic and postural exercises, good hydration, wrestled with the meaning and nature of disability, and nutrition. If disabling signs and symptoms persist, social responses themselves vary greatly across time, intervention must factor in the stage of tissue pathol- region, cultures, and situations. Nevertheless, a survey ogy, the extent of tissue damage, the status of change of disability representations demonstrates the degree in cortical function, and whether surgery, medications, to which human differences pose substantial conflicts Representations of Disability, History of———1383 for all communities. Thus, representational art has representational fate. Their social marginality has always grappled with such conflicts, and these docu- occurred despite widespread circulation. In fact, the mented efforts create a significant historical discourse presence of disability, as allegory, motif, and social about disabled people. cause, can be said to serve as a critical component of a Here, we define representation as the efforts of further silencing by representation that disabled cultural workers to speak on behalf of an individual persons may experience. In contemporary life, this cir- or group in artistic arenas. While one may argue that culation may be due to the mysteries that attend to images of disability in any textual or visual arena are bodies that have been hidden away for their lack of pro- equally imaginative, we are primarily interested in the priety. Whether for the sake of charitable act, freak specific productions of disability in genres identi- show shock, indication of mysteries, evidence of suf- fied as “creative.” Representation suggests an effort fering, or body difficulty that requires social attention to imagine perspectives difficult to come by in our to research and prevent it, representations of disability everyday lives. In part, this places an ethical demand have remained central to acts of cultural production. on art to conjure the lives of those significantly distant Until recently, with the generation of a collective dis- from a reader’s own experience. The historical course concerning disability representation, this circu- sequestration of disabled persons makes them a com- lation of disability imagery has been little discussed by mon representational objective in that artists employ critics, historians, and cultural commentators. Recently, the uniqueness of such perspectives as an impetus open interpretation of the disability implications of for generating audience interest. For instance, in the artistic discourses has occurred as an educational and Greek play Philoctetes, the abandonment of the dis- research priority that accompanies deinstitutionaliza- abled title character on an island because he is incon- tion and human rights initiatives on behalf of disabled venient and “un-useful” ultimately makes it necessary persons. Still, representational critique refers us back for his fellow warriers to return to retrieve him. Besides to a lack of social consensus as to whether access and recognizing that Philoctetes holds Heracles’s bow as a inclusion, as opposed to cure or sequestration, are the weapon, which could ensure victory in war, his literal best goals to be held out for disabled persons. absence also causes significant interest as to how he Disability persists as a perpetual topic of commen- has lived and what wreckage on his psyche the impair- tary (particularly in representational mediums) due to ment (a painful, festering wound) has caused. His a variety of historical developments: abandonment results in the necessity of a return to the society that originally rejected his body, as if his 1. Disability has largely been consigned to the removal ultimately comes full circle back to our inter- domain of medicine as a matter of individual dysfunction or insufficiency. est in what has become of him. Since representation produces one thing that stands for another, the drama 2. Stories about disability often conclude with of Philoctetes’s rejection ultimately becomes an solutions that result in the erasure of impairments opportunity to contemplate social tolerance toward either through death or cure. difference. Therefore, disability’s common ouster 3. The alleviation of disability in our cultural narra- from social contexts ironically results in ritualistic tives ultimately asks nothing of the wider society returns in imaginative texts. One is tempted to draw a in terms of accommodation, political action, or mathematical formula of inverse relations: the degree social recognition. to which an experience appears absent from social life 4. Stories about disability have often featured a single determines the degree of interest lavished on that individual existing without reference to a larger object in artistic discourses. population of like-minded/embodied individuals. Consequently, while many minority groups have argued that social marginalization occurs, in part, as a While exceptions to these four general patterns of result of the absence of their images in artistic dis- plot certainly exist, as narrative winds its way toward courses, images of disabled people suggest a different surprise, suspense, and satisfactions for the recipient, 1384———Representations of Disability, History of the list helps to explain the reasons why disability In classical Greek literature, perhaps the first exten- may be overlooked as a significant mode of character- sive repertoire of disability texts available for scrutiny, ization or metaphor in literary critical history. we meet up with well-known characters such as Throughout the scant written records of ancient the blind and hermaphroditic prophet Tiresias, the civilizations such as those from the regions of ancient ensnared and cane-walking hero Oedipus, the untimely Mesopotamia and Greece, one encounters the mark wounded Philoctetes, and the one-eyed gigantic of disability as commonly relating to a metaphysical Cyclops representing wholly other physical castes predicament. This fact alone suggests that the appear- of tribes—among many others—whose bodily differ- ance of characteristics deemed highly distinctive, while ences signify the need for their location on the periphery presumed largely detrimental by other social resi- of various communities. Yet, whereas prophetic texts dents, occurs with some frequency. Within the texts of contended a direct correspondence between disability these ancient societies, disability is often treated and social fate, these texts offer up reflexive contem- either as a punishment visited upon individuals and plations of the question. While many narratives even- communities for the sins of the past or, at least, in a tually justify exclusion based on human differences purely symbolic way as a message from the gods that or presume a naturalized segregation of communities, must be interpreted. In either situation, disability there are numerous instances where social exile is references the mysterious ways of divinities and their shown up as an insufficient solution. unpredictable plans for human communities. At the In much Greek literature, disabilities function as a epistemological level, ancient civilizations often sign of a character’s “tragic flaw” or “compensatory treated disability as if it represented an encoded insight.” Tiresias’s blindness provides him with an missive from a vaguely discernible extraterrestrial uncanny ability to predict the future and provide order—one that demands recognition of its symbolic sagely commentary on a range of social conflicts; significance and an appropriate response from the Oedipus’s limp (a result of his father, Laius’s, efforts community at large. to pin his ankles and leave him to die of exposure on Thus, we witness the existence of early prophetic a hillside) allows him to draw from his experiences of texts, such as cuneiform tablets or oracles that predict disability to solve the riddle of the sphinx (an anom- future outcomes as encoded by the bodies of aborted alous hybrid figure in her own right); as discussed ear- fetuses and babies with birth disabilities. For instance, lier, Philoctetes’s agony from an untreatable wound ancient Mesopotamian texts interpret human and ani- prompts his fellow soldiers to abandon him on an mal “deviancies,” disabled fetuses and demarcations in island; and Cyclops’s monstrosity is emphasized by sacrificial herd animals, as a sign that something seri- physical characteristics that mark him both as racially ous is in store for the recipient culture. These refer- foreign and less intellectually agile than his wily cap- ences by anatomical difference do not necessarily tives. Each of these stories turns on revelations drawn predict negative events—in some cases, predications directly from the specific disability of each character. about organic differences remark on lengthy regimes Thus, it can be said that Greek literature helps to ini- for a ruler or a favorable harvest. Yet, more often than tiate the long-standing historical reliance of literary not, metaphysical readings prompt visions of cultural characterizations upon disability as a means to differ- catastrophe. Characteristics considered deviations from entiate heroes or villains from their less distinguish- societal norms rarely refer to individual fates in these able (and thus often less storied) literary peers. For early texts. Instead, an entire community or society instance, the cycle of plays about Oedipus (translated will be implicated by the meaning derived from a sin- from the Greek as “swollen foot”) seems to hurdle gle anatomy. Thus, the arrival of visibly disabled off- toward the revelation that his limp marks him as an ill- spring must have precipitated significant anxieties fated agent. In other words, the meaning-laden signif- among leaders and citizens alike. Reported practices of icance of disability must be recognized for its social the infanticide of “deformed” or “unhearty” children help layering, its predictive consequences, and its psycho- to solidify this interpretation. logical, albeit angst-ridden, complexity. Representations of Disability, History of———1385

Whereas one finds key literary characters accompa- However, a paradox of the cure scenario, so often nied by disabilities in ancient literature, early Christian repeated in New Testament writings, turns upon the and Islamic sources adopt disability as either a strict erasure of disabilities. An alternative tradition of argu- marker of exclusion or as a generic characteristic of mentation has begun to take shape around interpreta- denigrated populations. The Hebrew Bible, for instance, tions of miracle cures as the obliteration of human tells the story of Jacob’s struggle with his faith (repre- differences rather than as justification for integration sented as a “stranger” at the river) that results in a per- or social acceptance. At the very least, the parallel of manent disability from severe hip dislocation; Leviticus divinity with the remedy of dysfunction, incapacity, or defines priestly purity primarily through the absence of aesthetic deviation makes little demand on action at disability as a source of potential contamination; Tobit’s the level of wider social networks. Short of existing in blindness allows him to be duped and then is “cured” a moment populated by a magical healer (the figure of by God as a reward for his daughter’s loyalty; and Jesus Christ as one of the first rehabilitation special- Mephiboseth’s childhood accident leaves him with a ists), disabled people (one might suppose) whose mobility impairment that both disqualifies him from his differences cannot be erased would find their integra- rightful claim to the kingship and provides him with an tion hardpressed at best. Later Christian works, such all-purpose excuse for his various shortcomings. There as those contained in St. Augustine’s City of God or is little questioning or interrogation in the Old Testa- the stories of St. Francis of Assisi kissing a leper, pro- ment regarding the way disabled persons should be vide examples of piety demonstrated by the efforts of addressed. Commentators struggle over translations that religious figures to eschew their worldly possessions only continue to certify a naturalized derogatory mean- and live among the downtrodden. A conspicuously ing such as that King David is said to hate the blind and promulgated morality exists in decisions to take up an lame and therefore desired their eradication en route to intimacy with those excluded on the basis of fears of conquering Jerusalem. contagion, aberrancy, and social transgression. In contrast to this narrative tradition, the New Meaningful alternatives to these Western traditions Testament seems to offer a more rewarding series of of disability representation can be identified among scenarios. Cripples, deaf-mutes, the blind, and epilep- traditions in the Middle East, Asia, and Africa, where tic individuals show up with some regularity in these disabled people can be found performing important stories—particularly at key moments when the social functions. Such productive representations of dis- prophetic powers of Christ or his disciples prove in abled people’s contributions can be found in works such need of exhibition. Still a largely mass phenomenon, as “The Meadows of Gold” by Al-Ma'sudi (c. 896–956 disabilities arrive as the characteristics of hordes of CE), which tells a tale of a deaf person thought most wor- unfortunates, as if human vulnerability equates with thy to represent the inhabitants of Kufa to the Caliph the imperfection of an earth-bound existence. One and also includes discussions about Abu al-Ayna, a finds some of the first lineups of disabled people blind person of great wit. In addition, the biographies of as supplicants in these stories as an opportunity to several prominent deaf, blind, and physically disabled demonstrate divine capacities exercised upon human people are detailed by the thirteenth-century Muslim imperfections. This foregrounding of misery through writer Ibn Khallikhan in his biographical dictionary. suffering embodiment situates early religious texts at Such biographies of exceptional persons include a the origins of a lengthy tradition of disability repre- learned blind man in Basra named Katada Ibn Di`ama sentation. Many biblical scholars have championed As-Sadusi (679–735/6); Abu'l-Aswad ad-Duwali, who the cure of cripples in the New Testament as a histor- limped in public and experienced seizures from “palsy” ical transition of acceptance toward destitute popula- (d. 688/9); renowned deaf teacher Abu'l-Abbas tions. Furthermore, some scholars have argued that Muhammad Ibn Yakub al-Asamm (d. 957); Muhammed the flayed and broken body of Christ indicates an Ibn Sirin (653/4–729), the deaf law lecturer who also early form of social integration toward imperfection wrote one of the early translations of the life of the and suffering on Earth. prophet Muhammed; poet Dibil Ibn Ali-l-Khuzai, who 1386———Representations of Disability, History of was reportedly deaf and hunchbacked from a “scrofu- inaccurately argued the following: “all dumb (i.e., mute) lous swelling on the back”; and Abu 'l-Abbas Ahmad people are deaf” because they lack access to oral Ibn Yahya Ibn Zaid Ibn Saiyar (also known as Thalab speech. In the wake of such beliefs, reports exist that the Grammarian), who became deaf but continued as Emperor Akbar undertook some early experimenta- an influential scholar in Baghdad. In addition, we might tion on disability by raising groups of children with also look to the Semimaru (Plays of the No Theater) deaf-mute nurses in a locked house. In addition, there in Japan, written by Zeami during the twelfth century. exist many reports from European travel writers that These plays feature the exploits of a blind biwa player the Ottoman court employed dozens of deaf-mute who lived on Mt. Osaka and was sentenced to death individuals as reliable servants to various rulers. Their because of his visual impairment by his father, Emperor valued capacities included beliefs that the impair- Daigo. Zeami’s renown as a musician caused the son of ments of these individuals rendered them incapable of prince Minamoto Hakuga to make a long, difficult trip hearing or bearing witness to the behind-the-scenes just to hear him play. escapades of those in power. In these instances, inca- In various Asian locales, there exists a long pacity becomes an ironic “value” while also overlook- tradition of cultivating the talents of people with sen- ing the fact that sign languages served as an equally sory disabilities in one particular skill such as music powerful means of communication among presum- or massage. Far fewer examples of similar investments ably incommunicative subjects. in those with cognitive or physical disabilities exist. Other than these brief references to the role of dis- However, a few examples of recuperated meanings abled people in various rulers’ dominions, disability in around historical individuals with physical disabilities the Middle Ages becomes increasingly sidelined as an may be found. If we research back to ancient Egypt, expression of human difference. One finds some early King Amenemope, the fourth ruler of the twenty-first treatment texts on devastating plagues such as those dynasty who ruled a substantial kingdom from 993 to on leprosy and compound fractures of the skull. The 984 BCE, is reported to have had a series of visible sudden diminishment of disability as a common rep- physical differences identified in the many statues of resentational device (if this can be said to be the case) him left behind such as an elongated head, large may be interpreted in a number of ways. This notice- ears, distended stomach, and wide hips. Similarly, we able dearth of representations signals a new and might also reference the later example of the African perhaps even more pronounced disregard of disabled Oba of Benin (1500–1597), who, upon experiencing people. One gets the feeling that late Christian texts in lower limb paralysis, claimed that his legs had been this period, such as St. Francis’s devotion to commu- transformed into the sacred mudfish. Since mudfish nities of people with leprosy as well as the practice can navigate land on their legs and swim in water, of other religious figures renouncing material goods they served as a symbol of the king’s capacity to move while taking up residence with the poor and incapaci- between earthly and spiritual realms. Such an inver- tated, play out efforts to combat this widespread sion of the meaning of disability saved this oba from neglect. Likewise, we could look to The Book of the fate of his predecessors, who were often executed Margery Kempe (1430) for an example of a medieval after falling ill. While such examples suggest individ- woman’s guild of the Holy Trinity that devotes uals with disabilities of exceptional talents, they may itself to the care of convalescing disabled women. Such also gesture toward the possibility of a more inclusive examples, as some scholars have argued, may repre- cultural moment in which disability did not automati- sent shifting values about human embodiment and a cally disqualify one from participation. new devotion to those most vulnerable to the violence Of course, as in any tradition, one can also find of social rejection. Disabled and poor people become evidence of more dehumanizing treatments toward enshrined during this period as a population that some people with disabilities. For instance, in eleventh- refuse to reject as deviant or unworthy of human care. century Persia, instructional manuals for princes pub- Yet, we might also consider the degree to which lished by Kai Kaus ibn Iskander ibn Quabus (1082/3) devotions paid to socially marginalized peoples Representations of Disability, History of———1387 provide a moral opportunity in this period to ensure Although earlier examples of state- and community- one’s own right to salvation in an afterlife. In other sponsored supports exist—such as the monetary pro- words, devotion to the “less fortunate” becomes a power- visions to disabled persons identified in the Athenian ful system of exchange in this period, wherein one Constitution of ancient Greece—European legislation commits oneself to support of these communities as of various kinds becomes increasingly numerous. a way of guaranteeing outward signs of divine “election.” Most of these policies served as early “diagnostic” We could celebrate these examples of religiously efforts to divide the “deserving” from the “undeserv- derived support to those who are often violently ing” poor. This division would prove key in most excluded during this period, without having to relin- Western locations, in that productive capacity to labor quish analyses of the social benefits that accrue to became increasingly critical to the definitions of citi- those who practice benevolent devotions. zenship in the modern nation. Accompanying the rise Another possibility is that we might comprehend of urban trading centers and the decline of feudalism the fading significance of representations of disability as a dominant economic system, cities and towns during this period as a product of rampant social passed numerous ordinances to punish idleness and crises in the transmission of diseases. If much of the practice of alms seeking. In the English Statute Europe, for instance, found itself exposed to the rav- of Laborers, approved in 1349, imprisonment was ages of various plagues, then a deepening sense of used as an incentive to compel most citizens into human vulnerability might have developed. Disabled “labor[ing] for their necessary living.” While this people have often held down the terms of a radical early legislation identifies a vague group of social frailty that others find threatening. Efforts to distance misfits based on unwillingness to labor, later legisla- ourselves from disability often expose the degree to tion deepens this division based on the status of “crip- which we fail to acknowledge our own potential ples” as a material inability to work. In addition, such exposure to various human-made and natural forces. legislation suggests at least the suspicion of an out- Perhaps one could locate this period as an example break of crippled pretenders—those who would feign of a time when many people felt as if their mortality disability to pursue begging as a viable career option and/or functionality could be easily compromised, to other socially recognized forms of labor. Later, and thus the ability to distance oneself from the around the year 1697, these English laws were further vagaries of human embodiment undermined a more amended to require that those who were legitimately explicit division across bodies. Perhaps the degree to “on relief” had to wear a badge or mark (such as a which one could afford to recognize disability as a large “Roman P”) visible to all on their clothing. Such chasm between ourselves and others collapsed during badging efforts were portrayed in the pinning of fox the period, resulting in a failure of common othering tails on disabled beggars, as seen in Pieter Brueghel strategies determined by investments in bodies and the Elder’s famous painting of “The Cripples” (1568), minds as a reliable partition between the vulnerable now hanging in the Louvre in Paris. Similar badging and invulnerable. We might also look to later texts practices were resuscitated in National Socialist such as St. Augustine’s City of God (1467) for its Germany during the 1940s toward those targeted on efforts to challenge common beliefs in “monstrosity” the basis of disability, sexuality, ethnicity, and race. as somehow outside of a divine plan of the universe of These two systems—charity and labor capacity— human embodiment. continue to compete for interpretive authority for However, somewhere between the fourteenth and several hundred years; in fact, we could say that they sixteenth centuries, one starts to witness a desacral- continue to struggle for cultural capital as two primary ization of disability. While various religious systems modes of modern disability response. continued to recognize disabled bodies as an object From 1500 to 1800, we witness an explosion of of charitable investments (massive charity networks works about “fools” and “court jesters” that represent developed just prior to this period), a correspond- social struggles over the presumably decreased capacities ing secularization of disability begins to develop. of individuals with cognitive disabilities and deafmutes, 1388———Representations of Disability, History of as well as the power often bequeathed to these at court, such figures also played a key role in the individuals by rulers and other prominent members seraglios. If rulers and other top officials were allowed of ruling regimes. The court fool was ridiculed and to practice their sexuality across populations of scoffed at for these idiosyncrasies and served as a women, disabled individuals—particularly those ren- source of entertainment for gatherings at various royal dered sexually impotent as eunuchs—were thought to assemblies. Yet, in addition to these prurient practices be ideal sentries who could not fall prey to the entice- of human exhibition, celebrated fools also managed ments of the harem. At the same time, narratives from to garner a significant degree of power for their roles. the 1550s about the reign of Suleiman in Istanbul sug- Some individuals with cognitive and physical disabil- gest that a disabled son in line for the throne could ities were thought to communicate in more meta- be contested on the basis of his physical differences. physical realms such that their “babblings” proved In addition, the British historian Richard Knolles alarmingly insightful. While most participants in a reported that a group of seven mutes participated in leader’s entourage were expected to comply with and the brutal assassination of the heir-apparent Mustapha support the dictums of their ruler, fools often found during 1553. All of these stories help to establish the some room for maneuver in these circles. They could expansive roles of disabled people in various court openly critique and satirize the doings of those in intrigues. Their differences are invested with various power as if fools provided a mirror to the rulers under meanings in which their distinct capacities—and, whom they served. Such characters proved relatively most important, incapacities—situate them within singular in these instances, but their mockery provided unique proximity to antics of power. Yet, it is not until an effective antidote to the arrogance that often devel- the sixteenth century that we witness the publication oped in ruling circles. The Spanish painter Velasquez of texts that foreground disabled individuals’ own captured the function of fools as agents of critique designs on power within such settings. among hierarchies of power when he positioned his Perhaps, ironically, the first truly “modern” protag- jester figure as the lone individual whose stare breaks onist, William Shakespeare’s rendition of Richard III the plane of the painting and meets the gaze of view- (1591–1592), develops out of the revelation that dis- ers directly. The figure poses as both amused and abled people inevitably participate in the seductions knowing—as if he holds secrets that might easily of power. In what is widely recognized as the begin- undermine the “pretense” of the aristocratic family in ning of modern literature, Shakespeare’s disabled which he serves. usurper of the throne delves theatergoers into his con- Texts by European travelers to modern-day territo- scious musings on his status as a disabled person. For ries such as Turkey, the Middle East, and northern instance, his much-performed opening monologue Africa during the period between 1500 and 1800 all points out the fact that while his “deformities” allow describe the multitudes of disabled populations in him full participation in wartime scenarios—where, attendance at various ruling class ceremonies. Hordes presumably, the ugliness of military clashes eclipse of deaf-mutes, dwarves, dumb men, eunuchs and Richard’s own physical “distastefulness”—the peace- women of seraglios, and others provide evidence of time that follows provides no viable role for such a the degree to which human differences did not figure. Throughout the drama, Richard mobilizes exclude one from participation at the highest levels his disability status to his advantage by simultane- of culture (no matter how hierarchical and diminished ously playing on perceptions of his incapacity while such inclusion might prove). One inventory from 1594 also pursuing a violent scheme of retribution toward of the royal court in Constantinople by the English those he believes have wronged him on the basis of his traveler, John Sanderson, lists the employ of 300 disabilities. Thus, Richard III inaugurates a cultivated “falconers, dwarfs, and dome [dumb] men” in a work- depth of characterization by hosting a character that force of more than 1 million for Sultan Murad III. As appears one way but unveils his interior musings as in the earlier discussion of deaf-mutes employed as existing in contradiction to his cultivated public guards who would not expose secrets or private affairs demeanor. Disability could be said to have inaugurated Representations of Disability, History of———1389 a split between public and personal presentation that By deploying deformity as an external sign of would continue to characterize representational strate- internal (albeit largely malignant) motivation, Bacon gies from this point onward as an inaugural moment help to set off an entire tradition of sciences of the sur- in modern literatures. face—those fields of investigation that rely on surface One also witnesses the rise of the empirical method phenomena (such as facial countenance or bumps on during this period as the European Enlightenment gets the skull or visible deformities) to interpret otherwise under way. Sir Francis Bacon and others craft a rela- difficult to detect moral qualities. While this practice tionship to natural and social worlds that promises was not new—some researchers trace the practice to expose the logical underpinning of the universe of interpreting questions of moral character in facial without reference to an omnipotent consciousness. The expressions back to ancient Greece—physiognomic system of analysis depends heavily on what Barbara systems came to be increasingly legitimated as “sci- Maria Stafford (1993) refers to as “technologies of the entific.” For instance, in 1778–1779, Johann Kasper visible.” New instruments and “reading” strategies Lavater published a highly influential system for read- allow investigators to get below the surface and arrive ing the truth of one’s character in the slope of the fore- at the essence of an object made newly available for head, shape of the ears, line of the nose, and lips. scrutiny. Various taxonomic systems get under way in Disabled people faired rather poorly in these interpretive this period, such as Carl Linnaeus’s Systema Naturae systems, in that their “insufficient” bodies were immedi- (1735) cataloguing of plants and animal life into vari- ately suspect—as if there existed an automatic short- ous classifications of belonging—genus and species, hand available to locating deficiencies of personal flora and fauna. Likewise, human forms came under integrity in the “obvious” deficiencies of the body, similar efforts to sort kinds of humanity into their mind, or senses. Such efforts provide us the opportunity appropriate columns. For instance, Linnaeus also put to trace out a history of the rise of normalcy, where the his efforts to sorting racial types—Americanus, identification of the “deviant” body becomes the Europeus, Asiaticus, and Afer—into a hierarchy of grounding for an imaginary normative body—one that values based on his own privileging of northern is symmetrical, fully functional, independent, racialized, European civilizations as superior to the denizens of gendered, and economically mobile. Significantly, this more tropical locales. Disabled people’s differences idealized normal body came to be increasingly identi- prove particularly critical to this venture in that an fied as a representative of the “healthy” nation. increasing premium was placed on the meaning Ironically, the rise of literary Romanticism posi- of visible differences as a referencing system for tioned itself in contrast to this burgeoning bodily otherwise intangible traits of character. In his essay ideal. Rather than tout the efforts of empiricists and “Of Deformity” (1601), Bacon—perhaps using states to analyze, govern, and control the unwieldy Shakespeare’s Richard III as his universal model— nature of the body, Romantic writers took scientific wrote about the unacknowledged “advantage” of efforts at dominion over nature as their antagonists. deformity among participants in royal courts. Whereas Wordsworth’s “idiot boy” (1798), Coleridge’s chroni- previous literature had largely emptied out the subjec- cally depressed mariner (1798), Shelley’s Frankenstein tivity of disabled people from designs of power, monster (1818), Hawthorne’s blemished femininity Bacon invests “deformed persons” with aspirations of (1843), Poe’s obsessive narrators and claustrophobic their own. As in the Shakespearian drama, Bacon cul- interiors such as “The Fall of the House of Usher” tivates an early psychological model of disabled subjec- (1839), Byron’s hunchbacked protagonist, and tivity by arguing that deformity is a spur to individuals Arnold, in his unfinished drama “The Deformed who seek to remove themselves from social ridicule. Transformed” (1824), all point to an era of literary Rather than divest deformed persons of awareness, production where disability came to be more synony- Bacon turns the tables and argues that their conditions mous with—rather than divergent from—conditions give them an even greater degree of motivation for indicative of human vulnerability. Within these climbing the royal hierarchy. works—perhaps one of the richest in Euro-American 1390———Representations of Disability, History of representational traditions of disability—the nonide- for instance, would apply rising sentiments of intoler- alized body becomes a vehicle of resistance and ance when she excoriated writers of her day to avoid social critique. Thus, we follow Wordsworth’s and defacing their work by populating plots with unsavory Coleridge’s entrance into sublime experiences of characters “suffering” from various bodily ailments. Nature with disabled characters as our guides; the Others, such as entrepreneur Phineas Taylor Barnum Frankenstein monster’s interrogation of his creator’s (1810–1891), sought to capitalize on the prurience of rejection on the basis of his nonnormative appearance public sentiments of the time through the exhibition of and functionality; the exposure of the alchemist, human “oddities” as a form of specular entertainment. Aylmer, whose efforts to achieve perfection in his His exhibits explicitly sought to exploit people with spouse through pursuit of a cure erases a birthmark on disabilities in their marketing as extraordinary anom- her face while also killing her; Poe’s shifting mental alies, such as individuals of short stature (e.g., states as undermining investments in static rationality; Tom Thumb and Lavinia Warren), those of excep- and Byron’s social critique of disability as engender- tional height or congenitally truncated limbs, and ing violent responses from family and neighbors on people of color showcased as evidence of Darwin’s the basis of solidifying normative expectation to evolutionary “missing links.” In all cases, individuals which he cannot conform. All of these texts establish with and without bodily anomalies performed for view- Romanticism as a key critic of normalcy’s violent ers through enhancements that emphasized their differ- social scheme—that which the African American ences so as to achieve the desired effect—exceptions writer, Toni Morrison (1970:97), calls the most so extraordinary that they could command large audi- destructive concept in Western traditions—against ences in the context of the freak show. which literature must resist. It also inaugurates a Freak shows played upon a fascination with period where literature imagines science as a primary human anomalies as their state-sponsored suppression opposition in its promotion of schemes that often increased. With the advent and later adoption of prove socially inflexible. theories developed by researchers such as the Dutch In fact, in many ways, we might read the alarm botanist, Gregor Mendel, regarding the workings of registered in Romantic literature toward empirically regressive and dominant genes, eugenics sought to backed efforts of dominion over Nature as quite pre- apply forms of reproductive control on human com- scient. As the eighteenth century gives way to the munities as well. Edouard Séguin in France, Samuel nineteenth, one finds disability increasingly targeted Howe in the United States, and Arthur Tredgold in by various efforts at “training” and institutionaliza- Britain all worked to segregate those diagnosed as tion. In European locales such as France, Britain, the “idiots” in the mid-nineteenth century. In many Netherlands, and Germany, as well as in Canada and respects, these figures participated as social reformers the United States, the science of eugenics takes shape. who identified familial and community neglect of Coined by the British statistician, Sir Francis Galton, people with disabilities as their primary nemesis. in 1889 from the Greek word for “good seed,” eugen- Yet, their arguments increasingly culminated in the ics recognized certain cognitive, physical, and sensory proliferation of rabid fears in North American and disabilities as a threat to the progress of the nation. European nations (as well as among various colonial Eugenicists argued that, as in the sciences of horticul- outposts) that the wealth of the country was directly ture and animal husbandry, human communities had tied to its ability to promote the reproductive partici- the responsibility to oversee and protect their “hered- pation of those with good heredity while restricting itary stock” through active breeding practices. Such such liberties for individuals recognized as “defec- arguments began to establish a lethal cultural atmos- tive.” Thus, as the nineteenth century draws to a close phere toward “inferior” peoples of maligned ethnici- and the twentieth century begins, we find the prolifer- ties, races, sexualities, and particularly people with ation of laws intended to actively police bodies. disabilities who cross all these identity groups. British Marriage restriction laws for those who have experi- social commentator Anna Laeticia Barbauld (1825), ence bouts of “insanity,” coerced institutional policies Representations of Disability, History of———1391 that could imprison “feebleminded” individuals against nineteenth and early twentieth centuries, one can find their will, sterilization laws that required those seek- racial, sexual, economic, ethnic, and gendered classi- ing to avoid institutionalization to exchange repro- fications of human deviance all dovetailing beneath ductive rights for their liberty, and, ultimately, Nazi the banner of defect—one that depended on a bio- extermination practices developed on the bodies of logically encoded idea of embedded inferiority that disabled people in psychiatric institutions all serve to could not be transcended to any significant degree by expose the degree to which Romanticism proved accu- acculturation, training, or rehabilitation. Develop- rate in its association of scientifically backed intoler- ments such as Native American reservations, segre- ance toward human variation with an upsurge in violent gated systems of racial apartheid, and widespread social practices. institutionalization efforts all shared an interest in Often in contradistinction to eugenic ideologies, sequestration practices as a response to reproductive leftist literature of the period sometimes held a close fears of contamination. Each marginalized group was identification with disabled people in that their bodies believed to share a similar capacity in the midst of could provide the material proof of inhumane work multiple incapacities: an unnaturally high fertility conditions as industrialization sped on and capitalist- rate. For instance, eugenicists claimed that those diag- based economic orders proliferated. In Uncle Tom’s nosed as feebleminded of all races reproduced at 6 to Cabin (1857), Harriet Beecher Stowe would use dis- 10 times the rate of “normals.” As the famed Supreme ability to metaphorize the wreckage of slave labor on Court justice Oliver Wendell Holmes stated in Buck v. the bodies of her African American characters; Karl Bell (1927), “Three generations of imbeciles are Marx (1867) would argue that capitalism sought to enough.” make bodies expendable through the creation of This period also witnessed a further tightening of surplus labor pools, thus exhausting the capacities of immigration requirements, such as the passage of the those who labored and then discarding “used up” bod- Chinese Immigration Act (1885) and an increasingly ies in favor of fresh, able ones; and in the novella, expanding definition of which disability categories Life in the Iron Mills (1872), Rebecca Harding could be barred from entry. Eugenicists who had Davis would present her female hunchbacked narrator been instrumental in obtaining restrictive legislation as evidence of an industry that mangles its employees against an array of conditions believed abnormal— with regular frequency. In a parallel spirit, many feeblemindedness, epilepsy, homosexuality, a variety women writers such as Elisabeth Stuart Phelps of psychiatric conditions, and various congenital (1877), Mary Wilkins Freeman (1890), Charlotte physical disabilities—played a key role in associating Perkins Gilman (1899), and others provided a “mute” various ethnicities with a greater prevalence of such or “hysterical” female body as evidence that patriar- variations. In fact, in 1913, noted U.S. eugenicist chal institutions sought to stifle women’s ability to Henry Goddard was invited by the U.S. government to participate meaningfully in public domains gendered bring his staff from the institution at Vineland, New as exclusively masculine. Furthermore, one might Jersey, to immigration headquarters at Ellis Island; the turn to influential African American sociologist purpose was to demonstrate their greater proficiency W. E. B. Du Bois (1903), who theorized racial feeble- at “spotting” feebleminded and other defective indi- mindedness as a product of inadequate access to viduals as immigrant hordes passed by the surveil- education and insufficient diet due to impoverished lance station. Eugenics ideology deepened an already conditions that prevailed after the Civil War. growing suspicion of difference across Europe and the Disability allows one the opportunity to reconstruct United States based on biological rather than cultural a rich cultural fabric that weaves all identities into a principles of inferiority. Entire populations could be shared project largely imposed from without. The rise placed under suspicion as a result. in pathologizing designations during this period The impact of such a sanctioned national ideology oversaw a proliferation of ways in which one could would inevitably surface in representational works of become “inferior.” During the European and American the era. Many modernist writers, for instance, would 1392———Representations of Disability, History of use disabled characters to signify varieties of cultural artistic efforts to use disability as a device to upstage collapse. If the “rough beast” of Yeats’s celebrated long-naturalized sites of male investment in feminine poem came “slouching towards Bethlehem” (1919), “beauty.” Whereas Francisco de Goya (Spanish, then that monster often proved disabled in some 1746–1828), Vincent Van Gogh (Dutch, 1853–1890), manner. William Carlos Williams would represent the and Frida Kahlo (Mexican, 1907–1957) explored the pure products of America in the figure of a “broken- rich territory of their own experiences with disability, brained” maid named Elsie (1923); T. S. Eliot would most artists sought out disability as a metaphorical resuscitate the blind prophet, Tiresias, from ancient path to more paranoid visions. Whereas Romanticism Greek mythology as a hermaphroditic figure who would premise a desirable, yet vulnerable and even exposes the cultural wasteland that rolled out before tragic, humanity through various human incarnations dulled modern sensibilities (1922); Virginia Woolf of imperfection, most modernist artists refused this would explore the promise of incapacitating illness stance as overtly sentimental—thus, disability came to for a woman writer while also espousing eugenic-like be transformed in this period as evidence of one’s scorn for her own mentally disabled sister (1930); willingness to peer, unwaveringly, into the cultural Sherwood Anderson would use physically and men- wreckage. In fact, one might be tempted to analyze tally “grotesque” figures to symbolize the stultifying much of modernist art as a reactionary movement to lives of rural, midwestern existence (1919); the lethal the artistic efforts about disability that preceded it by German medical and legal team, Binding and Hoche, approximately one hundred years. would forward an idea of “useless eaters” and “lives One can worry over the dehumanizing tendencies unworthy of life” as the central thesis of their tracts on that so often crop up in the art of this period or mar- euthanasia (1920); D. H. Lawrence would metaphorize vel at the centrality of disability (even as it references a war-torn, beleaguered masculinity as the impotent, other social conditions beyond itself) to this cultural wheelchair-using Clifford Chatterley (1928); and moment’s concerns. With the flood of disabled veter- William Faulkner would emblematize the era’s chaos ans in the aftermath of two world wars, disability must as a tale told by a 33-year-old “idiot” named Benjy in have been on the minds of many—particularly after his experimental novel The Sound and the Fury (1929). effective treatments for bladder infections decreased All of these literary portraits deploy disability as an the mortality of wheelchair users significantly. The indicator of the extent to which nineteenth-century rise of key institutions such as vocational rehabilitation, ideals had come crashing down around the moderns. special education, and the various therapies (physical, One can find a similar sensibility extant in graphic occupational, speech) that all began—to one degree arts of the period. German expressionist painter or another—in eugenics-based training programs of Otto Dix’s (1891–1969) paintings teem with disabled socially segregated populations began to compete figures, as if the imperiled body saturated social land- with many of the institutions in which they originally scapes indifferent to their losses. His experience with appeared. At least in the United States, eugenics multiple wounds as a German soldier in World War I began to fracture amid a sea of institutions all vying fueled his allegorical visions of an amputated civili- for the management of disabled populations; rather zation going about its business as if nothing had than full-time segregation in institutions, for instance, changed. Picasso and other cubist experiments with special educators argued that a significant cost-saving multiple perspectives sought to destabilize invest- measure could be achieved by educating handicapped ments in singular, integrated vantage points on well- and subnormal students in ungraded classrooms while worn artistic subjects such the female nude, still lifes, sending them home each night to receive care in their and socially marginal individuals, such as his portrait homes. In Canada, vocational rehabilitation facilities titled Blind Man’s Meal (1903). Paul Strand’s photo- and disabled veterans organizations would press for graph of a blind woman wearing a sign announcing the provision of technologies—such as hand controls her diagnosis (1916) and Giorgio de Chirico’s abstract in automobiles or white cane travel training—to painting of disabled female muses (1918) also signal reintegrate institutionally static populations into their Representations of Disability, History of———1393 local communities. This call for disability-specific (Polly and Pecola Breedlove in The Bluest Eye technologies proved necessary not only on behalf of [1970], Shadrack and Eva Peace in Sula [1973], Sethe the restoration of dysfunctional bodies but also largely in Beloved [1987], etc.), Alice Walker’s Meridian and on the basis of the inaccessibility of mass public tran- Wild Child (1976), Maxine Hong Kingston’s “wild sit systems in urbanizing economies. This “reintroduc- man of the Green Swamp” in China Men (1980) and tion” of a narrow array of technologized, cyborgian Whitman Ah Sing in Tripmaster Monkey: His Fake disabled citizens—particularly paraplegic, visually Book (1989), and Louise Erdrich’s (1984) and Leslie impaired, and postpolio populations—required a Marmon Silko’s (1977) disabled Native American historical realignment on the part of societies that had veterans provide a glimpse into new artistic efforts avoided the necessity of more meaningful contact. to revivify disability as part of—rather than a slander Thus, just as the female protagonist Scout in Harper upon—racialized communities of color. In the United Lee’s novel, To Kill a Mockingbird (1962), has to States alone, such influential minority authors precipi- recognize the humanity of her cognitively disabled tated a representational renaissance of minority view- neighbor, Boo Radley, so did many Western countries points that often included disability as integral to the start the difficult process of reintroducing disability burgeoning of nonmainstream narratives. perspectives—along with other minority constituencies— As literary and cultural critic Leslie Fiedler ([1962] to their representational repertoires. 1996:386) would announce, disability functioned To the extent that early twentieth-century represen- as a “final frontier” of representational exploration. tational arts recognized disability as an encounter Whether this proclamation would prove true, devel- with cultural disintegration, many late twentieth-century oped disability perspectives helped to fuel social com- artists recognized opportunities for unheard stories in mitments to the portrayal of devalued lives during the the experiences of disabled persons. Andrew Wyeth’s final half of the twentieth century. As civil rights celebrated painting, Christina’s World (1948), appears and women’s movements gathered steam as vectors as a typical pastoral landscape on a farm until one real- of political revision and social renewal, the disability izes that her vantage point on the ground is that of a rights movement galvanized its own successes for woman with a neuromuscular disorder. In photography, meaningful integration of bodies deemed formerly American documentary artist Dorothea Lange used her unproductive. Rather than late-nineteenth-century perspective as a woman with post–polio syndrome to emphases on human difference as pathology, dis- identify with and create stirring images of people in the ability played a key role in representational efforts to grips of rampant poverty during the U.S. Depression reclaim rejected bodies and lives. Along with the pas- era. In the late 1950s, she also took a series of photos of sage of key disability legislation in a variety of global her atrophied right foot as an object of contemplation outposts, the stories of disabled people—particularly and personal difference. In literature of the African those produced by contemporary disabled visual, tex- diaspora, one witnesses a counterrepresentational effort tual, and performance artists and their close allies— to distance portrayals of racialized disability from became one critical site for reimagining representational earlier efforts, such as W. E. B. Du Bois’s eugenics-era domains as critical sites of struggle over meaning. formulation of the “talented tenth” (1903). Rather Given the debilitating depictions often associated than adopt this hierarchical model of exceptional racial with disability—those that largely overwhelmed various genius created to combat associations of race with bio- efforts to appropriate disability as a meaningful aspect logical models of inferiority, contemporary writers of of human diversity—media have become increas- color began to explore disability as a meaningful part ingly recognized as key to political interventions. of the mosaic within their own communities. Mrs. Such efforts have not eclipsed the role of art in pre- Hedges’s corpulent and scarred figure in Ann Petry’s senting less nuanced representations, but they have, at The Street (1946), Ralph Ellison’s analyses of the least, charged the field of representation as one that social invisibility in The Invisible Man (1952), Toni is crucial to contemporary disability politics. Efforts Morrison’s multiple examples of disabled characters to reimagine disabled people’s critical relationship to 1394———Representations of Disability, Social a variety of social contexts often take place in Stafford, Barbara Maria. 1993. Body Criticism. Cambridge: MIT representational domains—those imaginative land- Press. scapes that can provide meaningful blueprints for Stiker, Henri-Jacques. 1997. A History of Disability. Ann Arbor: University of Michigan Press. worlds where disability is treated as integral to human Thiher, Alan. 2000. Revels in Madness: Insanity in Medicine and endeavor that have not yet been realized. Literature. Ann Arbor: University of Michigan Press. —David T. Mitchell and Thomson, Rosemarie Garland. 1996. Extraordinary Bodies. New York: Columbia University Press. Sharon L. Snyder ———. 1996. Freakery: Cultural Spectacles of the Extraordinary Body. New York: New York University Press. See also History of Disability: Ancient West; History of Disability: Early Modern West; History of Disability: Korea; History of Disability: Medical Care in Renaissance Europe; ᨘ History of Disability: Medieval West; History of Disability: REPRESENTATIONS Pleistocene Period. OF DISABILITY, SOCIAL

Further Readings A phrase such as “representing disability” or “repre- Crutchfield, Susan and Marcy Epstein, eds. 2000. Points of senting disabled people” bears many meanings. The Contact: Disability, Art, and Culture. Ann Arbor: University most common refers to the act of (re)presenting dis- of Michigan Press. abled people in literature, the arts, and the media. An Davis, Lennard. 1995. Enforcing Normalcy: Disability, Deafness, analysis of the evolution of these forms of representa- and the Body. New York: Verso. tion through history, in particular in literature and the Deutsch, Helen and Felicity Nussbaum, eds. 2000. DEFECT! Engendering the Modern Body. Ann Arbor: University of pictorial arts (including cartoons, cinema, and other Michigan Press. media), informs us about the place that societies make Fielder, Leslie. [1962] 1996. “The Higher Sentimentality.” In for impairment in a given era. A second, more concep- Return of the Vanishing American. Reprint, New York: Viking. tual, meaning of representation, which encompasses Gartner, Alan and Tom Joe, eds. 1987. Images of the Disabled, the first, refers to a theory derived from social psy- Disabling Images. New York: Praeger. chology. The concept of social representation takes Gerber, David. 2000. Disabled Veterans in History. Ann Arbor: University of Michigan Press. into account the formation of bodies of knowledge Holmes, Martha Stoddard. 2004. Fictions of Affliction. Ann Arbor: originating from common sense and has been widely University of Michigan Press. used in various disciplines of the social sciences. Meekosha, Helen. 2005. Body Battles: Disability, Representation, A third meaning for the term representation, more and Participation. Thousand Oaks, CA: Sage. distant and not discussed in this entry, refers to action Mitchell, David and Sharon Snyder, eds. 1997. The Body and in the name of another person or a group, that is, becom- Physical Difference: Discourses of Disability. Ann Arbor: University of Michigan Press. ing a spokesperson or advocate on the political level. ———. 2000. Narrative Prosthesis: Disability and the Disabled people thus have “representatives” and “repre- Dependencies of Discourse. Ann Arbor: University of senters” in a variety of instances. Michigan Press. Morrison, Toni. 1970. The Bluest Eye. New York: Washington Square Press. REPRESENTATIONS OF Rose, Martha. 2000. The Staff of Oedipus: Transforming DISABILITY IN ARTS AND MEDIA Disability in Ancient Greece. Ann Arbor: University of Michigan Press. Since the close of the 1970s and with the emergence Sandahl, Carrie and Philip Auslander, eds. 2005. Bodies in of disability studies as an academic discipline, there Commotion. Ann Arbor: University of Michigan Press. has been a sharp increase in critical and historical Shildrick, Margrit. 2002. Embodying the Monster: Encounters works that address the ways in which disabled people with the Vulnerable Self. Thousand Oaks, CA: Sage. Snyder, Sharon, Brenda Brueggemann, and Rosemarie Garland- are portrayed in culture, in particular in literature, cin- Thomson, eds. 2002. Disability Studies: Enabling the ema, and the media. Recurring stereotypes are associ- Humanities. New York: MLA Press. ated with impairments: “There was the passively Representations of Disability, Social———1395 suffering angel of the house, the overcompensating does not suffice to explain the metaphorical role that supercrip, the tragically innocent disabled child, the disability plays in culture. In addition, the criteria for malignant disabled avenger and the angry war vet- what constitutes a negative or positive representation eran” (Mitchell and Snyder 2001:202). Some impair- are not easy to define and vary according to the time ments are frequently depicted—epilepsy, restricted and the culture. growth, the blind, the cripple, the leper—while others A historical approach to this artistic reproduction are ignored (Shakespeare 1994). points up the great complexity and richness of repre- sentations of disability and illuminates their symbolic A Dominant Feature: and social functions in different periods. By repre- The “Psychologization” of Disability senting the human body in all its diversity, its defi- A first characteristic of works that bring disabled ciencies, and its malformations, the artist goes beyond people onto the scene is a general tendency to pass over the visible that is apparent to everyone else “to reveal social conditions in the experience of disability, such as the hitherto concealed visible, to free our gaze from the inadaptation of the physical environment, in favor conventions and stereotypes, to imagine, fantasize, to of individual factors. Thus, social isolation will not be open onto new scenes of human reality that are still attributed to the staircase that makes the outdoors inac- unknown or ill known” (Blanc and Stiker 2003:10). cessible but to the paralysis that prevents walking. The First, an observation: In all of this, the motif of dis- process of “psychologization” that follows associates ability is central in all eras, which leads to its recogni- certain personality features with disabilities. Isolation is tion as a fundamental category of human experience, made into a tendency toward introversion, the presumed the rule rather than the exception (Mitchell and Snyder consequence of a necessarily tragic life experience. 2001). Another noteworthy fact is the use of disability as metaphor. By making reference to disability, the Images Creating Ambivalence author most often seeks to represent, in figurative fash- ion, misery and depravity as one facet of the human A second characteristic of these representations is condition. Thus, Clifford Chatterley, the impotent their bipolarity, which inspires such paradoxical feel- industrialist created by D. H. Lawrence, symbolizes ings as fear, pity, and guilt but also admiration. The “the decline of privilege and power in the British aris- vulnerability and passivity of the innocent afflicted tocracy” (Mitchell and Snyder 2001). child are contrasted, now with the demonical and Stainton (2003) showed how the Renaissance vengeful personality of the frustrated cripple, now with marked a historical turning point in the ways in which the heroism that permits another to “overcome” his or madness and other forms of disability were repre- her disability. “In Victorian children’s books, crippled sented. Until the close of the Middle Ages, repre- young people teach messages of courage, forgiveness sentations of madness were purely allegorical. The and generosity; witches are always ugly, and villains famous painting The Ship of Fools, in which generally have had an impairment—Captain Hook, Hieronymus Bosch points up the folly of humans, is Long John Silver and all” (Shakespeare 1994:284). one illustration. Bosch stages a group of characters The recurrence of such images and the plots into representing the whole of mankind, voyaging through which they are introduced contribute to reinforcing the seas of time on a small ship gone adrift, eating, cultural prejudice toward disabled people. As Barnes flirting, playing witless games, and pursuing unattain- (1992:39) emphasized, “They form the bedrock on able objectives. With the exception of one “madman,” which the attitudes toward, assumptions about, and recognizable by his cloak and hood, who is situated in expectations of disabled people are based.” the background and thus serves as a kind of cipher, none of the characters represented is stigmatized in Disability as Metaphor one way or another. The Ship of Fools is not about However, the simple distinction between negative other people; it is about “common individuals and com- and positive images of disability, acceptable or not, mon institutions, serving as the features of everyman” 1396———Representations of Disability, Social

(Stainton 2003:235). It is the group as a whole and with congenital defects, which were inexplicable at its context, and not any one person in particular, that the time. But at the same time as they supply meaning, represents madness and folly. representations of disability propose new categories Some years later, Brueghel, in The Cripples, of human variations and define, in ways that vary with portrays people voluntarily stigmatized with the help the culture and the era, the characteristics that will of prostheses. As in Bosch, their representation is make up the norm and those that will be excluded metaphorical. The ridiculous headdresses worn by from it. “Disabilities exemplify that the ideal of the the characters symbolize organized social groups (the norm cannot exist without its ‘deviant’ contrast” Church, peasantry, middle class, aristocracy). Given (Mitchell and Snyder 2001). Here we have all the to our gaze is an inverted social space, “the disorder to ambiguity of these representations, which, in a single be found in order, the mirror of a society that is always interpretive act, seek both to domesticate the alien and ill-formed” (Stiker 2003:128). However, where the keep it at a distance. rupture occurs, according to Stainton, is that starting with this period, representations of disability begin SOCIAL REPRESENTATIONS to be primarily representations of individual people. OF DISABILITY They are “increasingly associated with moral defects, and the study of physiognomic features as indicators The concept of social representations proposed by of character was a pseudo-science popular in the six- Mocovici (1984) provides a theoretical framework teenth century” (Stainton 2003:237). that allows the linking of representations of disability This observation may be juxtaposed with a more to the overall culture from which they emerge, and a general evolution that characterizes the Renaissance: better understanding of their dynamics, their functions awareness of the existence of an internal self that and evolution. determines conduct. Philosophers and poets became Constructed at the juncture between the individual more and more interested in the workings of the and the collective, between the subjective and the mind. The idea that appearances are deceptive occurs objective, agency and reproduction, social representa- frequently in the works of the period, in particular tions constitute a body of knowledge of common in the theater of Shakespeare. This cultural con- sense particular to a culture. They bring a sense of text favors the emergence of a belief in an associa- commonality and they organize social life. “Social tion between physical appearance and character. representations live and die through the media, con- Shakespeare’s Richard III is doubtless one of the versations, narratives, rituals, myths, patterns of work first illustrations of a natural correspondence between and art, among many other forms of social mediation” physical imperfection and villainy (Mitchell and (Jovchelovitch 1996:127). Emerging into the public Snyder 1997). sphere, the space where intersubjective reality is In their capacity as metaphors, representations constructed, they are at one and the same time descrip- of disability have a symbolic function. They are often tive, evaluative, and prescriptive. By determining both hardly realistic and are remote from the experience of causes and consequences, they give sense to events, the people in question because they have another goal situations, and actions at the same time as they are than to inform the public objectively. In a general way, the vehicle of a judgment, of an evaluation concerning they suggest significations, decoded with the help of them. These interpretations, socially connoted and the cultural tools available in every age (e.g., mythol- shared by the members of a same group, orient future ogy, religion, psychology, biology, . . .), of what actions, at times serving as their justification. It should appears strange, unfamiliar, or even exceptional. also be noted that this common knowledge, to which These cultural interpretations make it possible to the dynamics of social representations contribute, is familiarize and domesticate what causes fear. Thus, above all practical. It is elaborated at the very heart of medieval stories of fantastical children, such as daily actions and interactions, in a close relationship changelings, attribute supernatural powers to children with current praxis. Representations of Disability, Social———1397

Disability and Representations of the Person Representations Inscribed in Social Practice Representations of disability in our cultures can The psychological types associated with disability be understood only in the context of the most general have their roots in a specific historical context. They representation of the person. The increasingly central correspond to the ideology of normalization through place that the rational individual is assuming in the rehabilitation that dominated the introduction of modern age requires the formation of a common medical and social care in the 1950s. The objective understanding—or “common knowledge”—of how was to return people who had been wounded in war the functioning of this individual, along with the or injured in accidents to the multiple interactions of reasons and meaning of his or her actions, is to be ordinary life, in particular, to the labor market, by comprehended. The emergence, in the mid-eighteenth acting as if there were no disability and one could century, of physiognomy and phrenology, which become “normal” by trying harder. This pressure sought to identify character on the basis of facial toward normalization has been costly in terms of features or the shape of the skull, was a first manifes- energy and commitment on the part of those involved. tation of this need to understand. The individualism that ignores social causes in favor Today it is “popular” as distinct from academic of individual responsibility produces an effective psychology that most often fills this same function. reversal: Will power and self-control, consequences The modern individual is free and responsible for of great efforts to live up to social expectations, are personal actions. Even if the individual is subject to considered causes of successful rehabilitation (Ville the influences of the immediate environment, she or et al. 1994). Viewing as natural what is in fact a social he has the power to control emotions in order to act response results in a reinforcement of representations rationally. The origin of behavior is, then, to be sought and a legitimization of rehabilitation practices. In fact, in the individual as defined by character or personal- such representation makes it possible to impute the ity, which, once formed, displays a certain stability failure of normalization to a weakness of character. over time and through situations. Social representations, in their capacity as cultural In this new cultural context, the metaphor of products rooted in praxis, also participate in the disability is transformed. It no longer evokes the human structuring of identities, which are in one sense self- condition in general but an individual situation that representations. Thus, persons who contracted polio- nonetheless has a universal character. It becomes the myelitis (polio) in the 1950s and who responded to the symbol of personal tragedy, of brutal experience with demands of rehabilitation, in particular by assuming unforeseen and irreversible consequences, experience “normal” professional activities, exemplify a uniform that any person may encounter but that has victimized representation of self, marked by the qualities of the disabled person. It is then the lived dimension of self-control, sense of duty, and meticulousness. “This this experience, perceived as terrifying, and its conse- post-polio identity overshadows all other social cate- quences for the individual that social representations gories such as age and sex,” unlike persons with para- seek to articulate through artistic and media-related plegia who acquired their impairments on average expressions. Reflective of the ambivalence generated 25 years later (Ville et al. 1994:314). by strangeness, the psychology of the disabled person oscillates between two poles: one marked by depen- dence, passivity, and frustration (general character- New Representations and the istics of social maladjustment) and the other by its Experience of Living with Disability heroic antithesis, driven by will power, coping, and There has, in fact, been some evolution over the perseverance. In both cases, to be carefree, sponta- past three decades that offers alternative representa- neous, and “comfortable in one’s skin” are character- tions of the experience of disability. Through their istics foreign to the dominant representations of collective mobilization and the emergence of disabil- disabled people. ity studies as a discipline, disabled people refute these 1398———Reproductive Rights representations of themselves that are remote from Jovchelovitch, Sandra. 1996. “In Defense of Representations.” their own experience. Instead, by means of their own Journal for the Theory of Social Behaviour 26:121–135. production (artistic, scientific, media related), they Mitchell, David T. and Sharon L. Snyder. 1997. The Body and Physical Difference: Discourse of Disability. Ann Arbor: propose realistic representations in which, neither University of Michigan Press. victims nor heroes and heroines, they are seen above ———. 2001. “Representation and Its Discontents. The Uneasy all as people confronting certain difficulties, difficul- Home of Disability in Literature and Film.” Pp. 195–218 in ties most often related to the attitudes of others. Handbook of Disability Studies, edited by G. L. Albrecht, Beyond the variety of these representations, two K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage. great trends have today come to the fore, each playing Moscovici, Serge. 1984. “The Phenomenon of Social Representations.” Pp. 3–69 in Social Representations, edited on a different register. The first states its opposition to by R. M. Farr and S. Moscovoci. Cambridge, UK: Cambridge the individualist conception outlined above by shift- University Press. ing responsibility for the disability from the individual Shakespeare, Tom. 1994. “Cultural Representation of Disabled to the social environment. It is the social treatment People: Dustbins for Disavowal?” Disability & Society of people who function differently from the norm 9:283–299. that produces disability, that is, all the barriers to Stainton, Tim. 2003. “Reason’s Other: The Emergence of the Disabled Subject in the Northern Renaissance.” Disability & social participation (inaccessibility, exclusion, preju- Society 19:225–243. dice, and discrimination). The second would reverse Stiker, Henri-Jacques. 2003. “Le détournement et le retournement the stigma by valorizing the experience of disability, de 1’infirmité dans 1’art pictural.” Pp. 125–137 in Le handi- the recognition of a specific culture, and the sense of cap en images: Les représentations de la déficience dans les achievement in contributing to it—disability pride. œuvres d’art, edited by A. Blanc and H.-J. Stiker. Ramonville While the first approach proposes new causes, Saint-Agne: Éditions Erès. Ville, Isabelle, Jean-François Ravaud, Catherine Diard, and located in the environment, the second assigns value to Henri Paicheler. 1994. “Self-Representations and Physical the positive consequences of experience of life with Impairment: A Social Constructionist Approach.” Sociology impairments. Although not mutually exclusive, each, of Health & Illness 16:301–321. by the specific sense that it conveys, seeks to initiate a certain kind of behavior. In the first case, the agenda is clearly political. It is a matter of engagement in actions ᨘ REPRODUCTIVE RIGHTS whose aim is the overthrow of the physical and social barriers present in the environment. The second, on the Reproductive rights and disability issues intersect other hand, stimulates cultural exchanges and cul- in two broad areas: whether people with disabilities tural production. But they have the common feature of can become parents and whether all prospective parents offering the opportunity for positive identifications for should be expected to use prenatal testing and abortion disabled people as political or cultural agents, and this or embryo diagnosis to reduce the births of children can only contribute to anchoring these new representa- who would have impairments. tions in both the larger public and in themselves. —Isabelle Ville and PEOPLE WITH DISABILITIES Jean-François Ravaud AS PARENTS

See also Disability Pride; Disability Studies; Film; Journalism; Most disability does not prevent women and men from Novel, The. participating in creating or raising children, but many Further Readings developed nations have placed informal and formal bar- riers to parenthood for people with a range of disabling Barnes, Colins. 1992. Disabling Imagery and the Media. Halifax: conditions. A few impairments include female infertility Ryburn and British Council of Disabled People (BCODP). Blanc, Alain and Henri-Jacques Stiker. 2003. Le handicap en and male sterility (Turner’s syndrome and cystic fibrosis images: Les représentations de la déficience dans les œuvres for women and men, respectively). Sometimes, women d’art. Ramonville Saint-Agne: Éditions Erès. with certain impairments will be advised that a Reproductive Rights———1399 pregnancy will endanger their physical health and signif- how the increasing use of prenatal testing and selective icantly increase the physical difficulties occasioned by abortion affects the place of people with disabilities in such conditions as diabetes or multiple sclerosis. This the world. Bioethicists, civil libertarians, health pro- entry concerns the nonmedical factors that influence the fessionals, and the public generally argue that prena- reproductive freedom of people with disabilities. tal testing, followed by pregnancy termination if an Opposition to parenthood for people with disabilities impairment is detected, promotes family well-being is especially surprising when it is remembered that and the public health. Testing and termination is most people whose disabling conditions occur after the simply one more legitimate method of averting dis- births of their children simply carry on their parenting ability in the world. responsibilities. Yet for those who acquire impairments Although sometimes prenatal testing occurs out- before the ages of typical family formation, parenthood side of a plan to abort based on results of the test, most is often discouraged. Regardless of impairment, people people who seek testing plan to abort the fetus if they with disabilities have been assumed incompetent to learn of a disability. Standard justifications include the keep their children safe or to give them the emotional following. and social guidance necessary for functioning success- Attitudes toward congenital disability per se have fully in society. It is believed that children of disabled not changed markedly. Both premodern as well as con- parents would consequently need financial and social temporary societies have regarded disability as unde- resources from the larger society to ensure their sur- sirable and to be avoided. Not only have parents vival and growth. Yet another source of opposition links recognized the birth of a disabled child as a potentially to social goals of reducing the numbers of people with divisive, destructive force in the family unit, but also disabilities in the population because it is feared that the larger society has seen disability as unfortunate. people with disabilities would transmit genetic condi- In the absence of adequate justification, a child is tions to future children. As a result of these views, many morally wronged when he or she is knowingly, delib- developed nations have encouraged the sterilization of erately, or negligently brought into being with a health people with a wide range of impairments late into the status likely to result in significantly greater disability twentieth century, and prospective disabled parents or suffering or significantly reduced life options report hostility from medical professionals, adoption relative to the other children with whom he or she will agencies, and social welfare agencies, which have been grow up. known to remove children from their rearing parents The parent’s/parents’ harms include emotional pain simply because of a parent’s disability. Notwithstanding and suffering, loss of opportunities, loss of freedom, these professional practices, people with disabilities are isolation, loneliness, fear, guilt, stigmatization, and becoming parents through ordinary sexual relations, financial expenses. adoption, and assisted reproduction; at least one major Parents of a child with unwanted disability have national organization exists to provide services and their interests impinged on by the efforts, time, emo- assistance to parents with disabilities (Through the tional burdens, and expenses added by the disability Looking Glass). Adult children of disabled parents have that they would not have otherwise experienced with started to publish their reflections of being raised by the birth of a healthy child. people with disabilities, and a small body of research Parens and Asch (1999) describe the disability has started documenting the strategies that people use rights critique of prenatal testing as follows. to raise their children successfully. Rather than improving the medical or social situation of today’s or tomorrow’s disabled citizens, PRENATAL TESTING prenatal diagnosis reinforces the medical model that AND SELECTIVE ABORTION disability itself, not societal discrimination against people with disabilities, is the problem to be solved. Worldwide, disability organizations, disability rights In rejecting an otherwise desired child because they activists, and theorists have taken up the question of believe that the child’s disability will diminish their 1400———Reproductive Rights parental experience, parents suggest that they are ideas about disability and are using testing out of unwilling to accept any significant departure from the myth and stereotype rather than current information parental dreams that a child’s characteristics might about how disability affects a child’s or family’s life. occasion. Critics contend that this practice differs from other When prospective parents select against a fetus actions that prevent disability and should not be com- because of predicted disability, they are making an pared with prenatal care for women, vaccinations for unfortunate, often misinformed decision that a dis- children, or health promotion for everyone. Selective abled child will not fulfill what most people seek in abortion and preimplantation embryo diagnosis both child rearing. prevent disability not in an existing human being, The disability critique argues that the practice and or in a fetus likely to come to term, but rather prevent the rationales for it are misinformed about the nature disability by preventing the embryo or fetus from of disability and morally problematic in the attitudes becoming a person with a disability. The practices they connote about both disability and parenthood. connote that if people do not meet a certain health The rationales for the practice are of three types. First, standard, they should not be welcomed into the family people with disabilities are more costly to society or the world. Critics do not seek to ban the practice, than others, and society should use its resources for but they believe that aborting a particular fetus differs children and adults who will not have impairments. from aborting any fetus because a woman does not Second, either the lives of disabled children are so want a child. They respond to each of the claims miserable that they are not worth living at all, or they offered for prenatal testing by arguing the following. are more miserable than the lives of nondisabled Even if every disability diagnosed prenatally were children are expected to be. Third, the lives of parents followed by abortion, it would not materially reduce and family members will be harmed by the psycho- the prevalence of disability in the world or the need for logical, social, and economic burdens of caring for society to change to better include those with impair- the child, and these burdens will not be offset by the ments. As contrasted with the claims of Green (1997), expected psychic and social rewards of raising a child who perceives a disability as an unacceptable infringe- without a disability. ment on a child’s future, people with disabilities fre- Disability rights criticism of prenatal testing stems quently enjoy their lives and do not generally perceive neither from general opposition to abortion nor from them as blighted by tragedy, even if their impairments misgivings about technology. It is aimed at profes- impose some constraints on them. Furthermore, such sional support for testing and abortion for some constraints may be diminished or eliminated by soci- particular group of characteristics but not other char- etal changes to better include all citizens. acteristics, suggesting that health professionals, Most families raising children with disabilities bioethicists, insurers, and policy makers believe that are not ruined by the experience, and, on average, the births of people with some set of characteristics families including disabled children fare as well as should be prevented. Pro-choice opposition to prena- other families on measures of well-being and family tal testing for disability shares much with those who functioning. oppose using the technology to avert the births of Marsha Saxton (1998) expresses well the sense of children of a particular sex. Suggesting that prospec- offense experienced by many disability rights critics tive parents select against an otherwise-wanted child when she says, because of its gender or disability implies that people The message at the heart of widespread selective who exist with these characteristics might be less abortion on the basis of prenatal diagnosis is the desirable to others and less happy themselves than greatest insult: some of us are “too flawed” in our people with different characteristics. The critique is very DNA to exist; we are unworthy of being born . . . aimed at changing the way that testing technology is fighting for this issue, our right and worthiness to be described to prospective parents, as well as at persuad- born, is the fundamental challenge to disability oppres- ing professionals and parents that they have inaccurate sion; it underpins our most basic claim to justice and Research———1401

equality—we are indeed worthy of being born, worth Botkin, Jeffrey R. 1995. “Fetal Privacy and Confidentiality.” the help and expense, and we know it! (p. 391) Hastings Center Report 25:32–39. Disabled Peoples’ International. 2000. The Right to Live and to Be Most disability rights opponents of prenatal testing Different. Paper presented at the DPI Conference on Disabled People, Bioethics and Human Rights, February, Solihull, UK. and selective abortion would not claim that the prac- Ferguson, Philip, Alan Gartner, and Dorothy K. Lipsky. 2000. tice is “eugenic” because few governments compel it. “The Experience of Disability in Families: A Synthesis However, the very offer of testing for some character- of Research and Parent Narratives.” Pp. 72–94 in Prenatal istics, but not all potentially diagnosable ones, con- Testing and Disability Rights, edited by E. Parens and notes that only some characteristics are worth the A. Asch. Washington, DC: Georgetown University Press. expense and trouble to avoid. Thus, using embryo Green, Ronald M. 1997. “Parental Autonomy and the Obligation Not to Harm One’s Child Genetically.” Journal of Law diagnosis and prenatal testing is a social decision, Medicine and Ethics 25:5–15. expressing societal views, and a direct challenge to Mathews, Jay. 1992. A Mother’s Touch: The Tiffany Callo Story. the societal claims to include people with disabilities New York: Holt. as full citizens and participants in the moral and human Parens, E. and A. Asch. 1999. “The Disability Rights Critique of community. Prenatal Genetic Testing: Reflections and Recommendations.” The disability critique includes the idea that the Hastings Center Report 29(5):S1–S22. Parens, Erik and Adrienne Asch, eds. 2000. Prenatal Testing and sentiments behind offering and using embryo diagno- Disability Rights. Washington, DC: Georgetown University sis and prenatal testing and abortion to avoid bringing Press. children with impairments into the family and the Preston, Paul. 1994. Mother Father Deaf: Living between Sound world will ultimately undermine parental appreciation and Silence. Cambridge, MA: Harvard University Press. of any children they raise. Pro-choice disability critics Retsinas, Joan. 1991. “Impact of Prenatal Technology on Attitudes agree that if a prospective parent makes a considered towards Disabled Infants.” Pp. 75–102 in Research in the Sociology of Healthcare, edited by D. Wertz . Westport, CT: JAI. decision that the family or the child will have an Saxton, Marsha. 1998. “Disability Rights and Selective Abortion.” unacceptable life based on parental hopes and values, Pp. 374–394 in Abortion Wars: A Half Century of Struggle, embryo rejection or abortion should be available. They 1950–2000, edited by R. Solinger. Berkeley: University of caution that such assessments may be misguided about California Press. both the nature of disability and the nature of parent- Wates, Michele. 1997. Disabled Parents Dispelling the Myths. child relationships. Every life, every family, and every Cambridge, UK: National Childbirth Trust Publishing. Wates, Michele and Jade Rowen, eds. 1999. Bigger Than the Sky: parent-child relationship contain disappointment as Disabled Women on Parenting. London: The Woman’s Press. well as delight. Prospective parents may be misguided and misinformed about parenthood and may thus Websites shortchange themselves and any children they raise by Through the Looking Glass, http://www.lookingglass.org/index.php adopting a selective approach to parenthood. —Adrienne Asch ᨘ RESEARCH See also Children of Disabled Parents; Citizenship and Civil Rights; Eugenics; Prenatal Testing; Sterilization; Values. In industrial societies, demographic trends and advances in health care are swelling the ranks of individuals Further Readings with disabilities. Plunging birthrates are increasing the Asch, Adrienne. 2002. “Disability and Reproductive Rights.” numbers of elderly populations. Many individuals with Pp. 64–67 in Historical and Muiticultural Encyclopedia catastrophic injuries and illness who previously might of Female Reproductive Rights in the United States, edited by have died now survive and become candidates for reha- J. A. Baer. Westport, CT: Greenwood. bilitation. As a result, the incidence of chronic disease Barker, Linda T. and Vida J. Maralani. 1997. Final Report: Challenges and Strategies of Disabled Parents: Findings has accelerated. From both a personal and societal from a National Survey of Parents with Disabilities. Oakland, perspective, the incentive to find better solutions for the CA: Berkeley Planning Associates. problems of disability is very high. 1402———Research

Scientific inquiry is a systematic way to solve determining the effects of existing ones, it is necessary problems and to have some assurance that the solu- to have an estimate of the numbers of individuals with tions are trustworthy. Disability research is a broad various disabilities and their status. The aim of epidemi- subject, encompassing a wide range of populations ology is to determine the incidence (the number of new and research topics. This entry examines the way in cases per year), the prevalence (the number of existing which disability research is conducted, some of the cases at a particular time), or the health status of indi- major problems involved and their solutions, and what viduals with a particular condition. Population surveys the future holds for the field. devoted exclusively to disability are rare; most informa- How disability is defined determines the direction of tion comes from those that have other purposes. Census inquiry. The book Disability in America, edited by data, which attempt to reach the entire population, pro- Andrew M. Pope and Alvin R. Tarlov (1991), provides vide an estimate of the number of individuals with a dis- a traditional view. “A disability refers to limitations abling condition but have little detailed information. in physical or mental function, caused by one or more In the United States, the National Center for Health health conditions, in carrying out socially defined tasks Statistics conducts an annual National Health Interview and roles that individuals generally are expected to Survey on 48,000 households that includes questions on be able to do” (p. 35). Deficits are a characteristic of the impairment or health problems that limit activity. The individual in relation to societal expectations, and reme- estimate is that more than 33 million individuals have diation comes from treatment by health professionals. some degree of activity limitation. Although there is recognition that there is an interaction Mental illness is one of the most prevalent disabili- between the individual and the social environment, there ties. It has also been one of the most difficult to identify is no mention of changing that environment. because of changing definitions and methods of diag- A second view of disability is that it is not an nosis. In the most recent research, individuals are iden- attribute of the individual but a social construction that tified as mentally ill if they have a cluster of signs and is the product of society and attitudes about disability. symptoms that result in impaired functioning. Most Both the built environment and customs and attitudes population surveys rely on telephone interviews in limit opportunities. It is society’s responsibility to make which strict sampling methods are used to ensure that the necessary modifications so that individuals with the group contacted is representative of the population disabilities can be integrated into society. Under the at large. Also, elaborate systems of questioning have second perspective, disability becomes a political issue. been devised that maximize the potential for receiving These two views are not mutually exclusive; indeed, truthful answers regarding various symptoms. the World Health Organization’s (WHO’s) Interna- The 1999 report of the U.S. Surgeon General esti- tional Classification of Functioning, Disability, and mates that about 20 percent of the U.S. population is Health incorporates both. affected by mental disorders during a given year, the The headings that follow organize studies roughly societal costs of which are enormous. The report found on the basis of the numbers involved and the level of that direct costs of mental health services in 1996 were inquiry, which determine the goals of research and the $69 billion. Indirect costs, estimated for 1990 at $78.6 methods by which to attain them. There are overlaps billion, come from lost productivity at the workplace, between sections. The classification is a rough scheme school, and home. Additional estimates from surveys by which to organize a very large body of work. are also needed to determine the proportion of those identified with mental illness who need treatment. Most studies find large gaps between the numbers THE SPECTRUM OF needing treatment and the facilities available. RESEARCH STUDIES

Population Studies Community Studies For governments to make informed decisions Community-based studies focus on a sample about allocating money, initiating new programs, or of people living in one identified area, such as a city Research———1403 or region, with the assumption that the community is doubled the chance of discharge home. The length of reasonably representative of other larger populations. hospital stay was reduced by 30 percent. This was the A sample is drawn from the community, so it is possi- first study to report on the effect of stroke unit treatment ble to study individuals in considerable detail. The in unselected patients and demonstrated the effective- research can be a one-time study or repeated surveys ness of stroke special units. that may extend over many years. Longitudinal stud- Community studies, either short term or longi- ies are fairly rare because of the expense involved, but tudinal, are costly and require the mobilization of a team the information derived may be invaluable. of investigators that may include clinicians, survey The Framingham Study is a well-known example of research specialists, biostatisticians, and interviewers. If work that began in one city in Massachusetts in 1948 done carefully, however, the yield can provide informa- and has followed the fate of the study population ever tion that may not come from any other source. since. The project, aimed at the effects of cardiovascular disease, selected 5,184 men and women between the Clinical and Educational Interventions ages of 28 and 62 at entry and followed them biannually The largest proportion of disability research comes with physical examinations, laboratory testing, and from a broad spectrum of work involving clinical or health history evaluation. It has been the source of some educational populations. Studies can range from large, of the most important information available on risk fac- multisite projects to much more modest research aimed tors for coronary heart disease. Because of the long time at providing insights for the particular facility involved. over which data have been collected, the Framingham Unfortunately, a high proportion of published work is Study has also been able to document the natural history not executed with enough attention to research design of aging and what chronic diseases resulted in illness and methodology to provide useful answers. For several and functional limitations. Better information is needed years, large-scale searches of the medical literature to on the major determinants of disability among those determine the best treatments have found many studies with chronic diseases to find ways to reduce and prevent wanting. The implication is that standards for both the physical disability in an aging population. During the execution and publication of research must be improved 1983–1985 set of examinations, when the population to ensure that the time and resources will be well spent. had an average age of 72 years, more than 92 percent reported having no disabilities or functional limitations. Another example of a community-based study, Clinical Research one that used a single time frame, is the Copenhagen There are success stories in disability research, Stroke Study. The question under investigation was however. The example below illustrates several whether a dedicated stroke unit resulted in better out- important principles of research. First, it investigates comes than other forms of traditional care. There has an important problem. Second, it has theoretical foun- been considerable research devoted to this topic, but dations that have evolved from several fields of investi- small numbers and selection bias made it difficult to gation. And last, it took several years of work to develop draw definitive conclusions regarding the effective- the insights that were eventually established. ness of special stroke care. When one community in Edward Taub, a neuropsychologist at the University Greater Copenhagen set up a stroke unit that handled of Alabama at Birmingham, spent several years study- all the individuals in that area with strokes, it was pos- ing the behavior of monkeys with limb paralysis. sible to compare the results with a neighboring com- He pursued this line of investigation because clinical munity without a special unit. The key to the research work with humans with paralysis as a result of strokes design was that a high proportion of all strokes in the or traumatic brain injury had shown limited success in two communities (88 percent) went either to the improving functional recovery of upper extremities. stroke unit or to medical or neurological units. Because patients valued the ability to use both limbs, Treatment on the stroke unit reduced the relative risk they were frustrated at the lack of improvement. of death by 50 percent, reduced the relative risk of dis- When affected monkeys had their intact limb charge to a nursing home by 40 percent, and almost strapped down and went through graduated shaping 1404———Research procedures using the paretic limb, Taub found that studies, particularly those related to the quality of there was considerable improvement in performance. research designs and methodology (Buysse and Bailey When the animals had been free to use whatever limb 1993). It is obviously important to identify those with they wanted, they naturally chose the intact one, result- strong designs and eliminate those for which conclu- ing in a condition he called “learned disuse.” Turning sions cannot be drawn. Out of the dozens of studies to individuals with hemiplegia as the result of stroke, examined, the authors found only 22 that matched the Taub and his associates applied the techniques they strict criteria they had set up. had developed with monkeys. They found that immo- The mean level of developmental outcomes, as bilization of the good arm and an intense course of assessed by standardized measures, did not vary in physical therapy resulted in impressive gains in ability integrated as opposed to segregated placement. (see Taub, Crago, and Uswatte 1998). Other research Integrated environments did provide a context that groups have begun to apply these techniques, termed facilitated peer-related behavior; that is, children with constraint-induced movement therapy, and a body of disabilities had more social interactions in such set- evidence is accumulating regarding their effectiveness. tings. But there were questions about whether this led to more sophisticated levels of play and thus would Educational Research have permanent effects. Integrated settings did show An essential tool of the research investigator is that children had more complex levels of play, with the ability to review past work. It not only provides a the opportunity to develop play-related skills. All in means for determining what has been done in a field all, the review showed that there did seem to be some of study but also identifies gaps in knowledge and the benefits for social-behavioral skills, although there direction of future research. Easy access to electronic were no advantages developmentally. Their work shows databases also makes the search much easier than in the complexities of trying to answer what seems on past times. There are large-scale collaborations among the surface a fairly simple question. nations in the medical and educational literature to A second example of an educational intervention establish research evidence. The study below provides concerns the management of chronic disease. Medical an example of a review in an area of study in which care is limited in the ability to reverse disease processes there are literately hundreds of pieces of work. or relieve symptoms. Individuals with chronic dis- One of the most vexing issues in special education eases then must learn to live with the disease and to is the appropriate placement for children with dis- manage their condition. There is a widespread need abilities. There is widespread agreement that, whenever for health education methods that can assist with possible, such children should be “mainstreamed,” that chronic disease management. A particularly promis- is, included in classes of nondisabled children. The ing effort is the Chronic Disease Self-Management argument has been made on philosophical and legal Program, devised by Kate Lorig and colleagues grounds that children with special problems benefit (1996) at the Stanford University School of Medicine. educationally, socially, and in other ways from such This group had 12 years of experience with community- exposure. The issue is a highly complex one, requiring based educational programs for people with arthritis. different perspectives depending on age level, class- In addition, the group conducted a series of focus room objectives, and broader policy considerations. groups of both well elderly and those with various Virginia Buysse and Donald B. Bailey Jr. of the chronic diseases. In these groups, they tape-recorded Frank Porter Graham Child Development Center at sessions in which the participants described their con- the University of North Carolina at Chapel Hill were ditions, expressed their feelings about dealing with ill- interested in comparing the outcomes of preschool ness and disability, described the impact of the disease children with disabilities in integrated and segregated on the lives of the individuals and their families, and settings. There are many benefits advanced for explained how they coped with such events. The the integration of such young children, but there have records were then systematically analyzed. Finally, been no reviews that compared these two settings. The they incorporated a social psychology theory called authors set up a series of criteria by which to judge self-efficacy into the program after finding that Research———1405 individuals with arthritis experienced pain reduction cognitive capabilities, greater independence, decreased and enhanced capabilities when they felt they were in need for assistance, decreased use of medical and per- control of their symptoms. In the program that resulted sonal care services, greater life satisfaction, and greater from all this work, trained lay leaders conducted classes feelings of well-being. When programs are concerned in community settings such as senior centers, libraries, with influencing physical and social environments and hospitals, and recreation centers, teaching individuals increasing opportunities for participation by those with how to develop exercise programs, problem solve, use disabilities, measurement of outcomes becomes more communication skills, use medications, deal with emo- complicated. Indexes here include employment, finan- tion, and improve cognitive strategies for dealing with cial support, access to transportation, access to health care, pain and disability. After training, individuals were and other such evidence. better able to cope with chronic disease, experienced A view of service outcomes that is gaining greater less pain, reported a better quality of life, and reduced acceptance is that the ultimate aim is to improve the their use of health care. day-to-day life of clients and patients. In health care, treatment populations increasingly are those with OUTCOMES RESEARCH chronic disease for which there is no cure, but pain AND QUALITY OF LIFE and discomfort can be relieved, the patient’s func- tional ability may be improved, and outlook on life The body of work reviewed above illustrates that can be enhanced. Quality of life has been used as disability research has many aims. A particularly pro- an umbrella term to include all the various aspects of minent aim in an era of cost containment has to do health status, daily activities, economic circumstance, with establishing the worth of program interventions. and perspective on life. A number of generic health The usual objective of research is to test a hypothesis status measures have been advanced as measures of or establish some relationship, but outcomes research quality of life related to health, but their applicability is management oriented. The applied research tech- to disability is in doubt. niques that are employed still follow the tenets of sci- A major problem with health-related quality-of-life entific investigation, but there is relatively little control measures is in what constitutes health. In response to over what is studied. The goal is to monitor the effec- the question, “Does your health result in any limita- tiveness of interventions and to improve their quality. tions to activities?” a person with spinal cord injury Clinicians, counselors, and social service workers— might answer no. Likewise, someone with a severe all those who provide services—have always had an disability that limited the ability to travel outside the enduring interest in the success of their efforts. And, of house might still regard his or her quality of life as course, clients have had similar concerns. It has only good, a perspective that might be puzzling to an been in the era of accountability, rising costs, and the outside observer. Quality-of-life conceptions, even search for cost-effective care that the results of service though still not clearly defined or measured, will con- have come to be called outcomes. The implication of the tinue to be used. Whether funding agencies will pay term is that results will meet some standard of accept- for treatment aimed at improving quality of life could ability and that the level of costs will also be acceptable. be a problem, although many such organizations rec- Programs of all types, from medical to educational, are ognize that individuals whose health, functional charged with demonstrating that their outcomes meet capacity, and life satisfaction improve may use health expectations. Managers are to “manage” outcomes by care services less. improving services and by “risk adjustment,” which simply means trying to select those who will benefit DISABILITY RESEARCH most. Unfortunately, this also has the effect of margin- AND EMPOWERMENT alizing many disabled people who are in greatest need. Outcomes research must identify the principal results Several forces have converged to force an examination of programs and how to measure them. The usual list of the role of those with disabilities in the research that of outcomes includes improvement of physical and affects them. In the 1960s, the civil rights movement 1406———Research resulted in social legislation aimed at improving the Research, the principal source of government- way society treated minorities. Although the movement sponsored research funding in the United States, has initially concerned individuals of color, it soon spread made its “new paradigm” the centerpiece of planning. In to include anyone who was disadvantaged, including this point of view, the aim is to reduce barriers, create women and the disabled. A parallel phenomenon, access, and promote wellness and health. The individual although hardly distinctive enough to be called a move- with disability is regarded as a research participant and ment, was the increasing attention given to the views of collaborator; decisions regarding research directions are consumers. Initially concerned with commercial trans- to be made jointly with professionals. actions, the consumer’s perspective began to play an This avenue of investigation produces considerable increasing role in various services, particularly health challenges, however. Ways to characterize and measure care and education. As health care became more com- either social or physical environments are in early petitive, the views of patients on the services they stages. It is not easy to do research in this area, particu- received and the results of services were solicited by larly when a high proportion of such work is carried on means of satisfaction questionnaires. Other types of by those trained in medical aspects of disability rather services have also begun to look at satisfaction. Because than in the social sciences. Greater interdisciplinary col- a high proportion of respondents indicate they are laboration is obviously in order. Still another problem in happy with what happened, satisfaction measurement is research under the socioecological framework is that the a blunt instrument that needs research on the underly- ultimate aim of this work is to make social reforms of ing factors that determine satisfaction. some kind. Researchers are not always comfortable in In the 1970s, a coalition of individuals with perma- the role of social activist, however. nent disabilities began the independent living move- ment. It was a rebellion against what they saw as a THE FUTURE paternalistic system that attempted to dictate how they should live and what services they should receive. Although there have been impressive gains in the past This group has vigorously pursued the concept that 25 years in the status of individuals with disabilities those with disabilities should, wherever feasible, and in the services they receive, there is still much to direct their own care and have a role in whatever accomplish. Research is hardly the sole instrument in studies are done about them. Funding agencies are bringing improvements, but it contributes heavily to the increasingly requiring that whatever advisory groups development of new methods of treatment and educa- grants create, there should be representation from tion and in evaluating the effectiveness of those in use. those with disabilities. Unfortunately, the priorities for research have come To some extent, research investigators are caught more from legislation and funding sources than from between the two models of disability already men- serious attempts at an integrated body of work founded tioned. There has been far more research under the on theory. With research spanning such a variety of medical model, with the search for more effective problems, it is not surprising that findings are scattered treatment methods and other ways to improve perfor- without much organization. Several issues need to be mance deficiencies. For the most part, this body of addressed if disability research is to have an impact. work has been planned and executed by professionals with only occasional consultations with those whom A Common Language. The lack of uniform concepts it affects. The second model, which has been termed and a common language has plagued the field from its the socioecological model, involving the social and beginning. There is no consensus for even basic terms physical environments in which individuals with dis- such as disability and functional limitations, which abilities live, has been given increased standing by makes it difficult to compare measures and results. The inclusion in the WHO International Classification addition of concepts such as health status and quality of Functioning, Disability, and Health. In addition, the of life, even though they have important implications National Institute on Disability and Rehabilitation for outcomes, has brought additional confusion. Most Research———1407 studies do not define terms very well, so investigators patients were treated, the occasional physical abuse, often simply use an instrument and label it as measur- and the pervasive boredom of routines with nothing to ing whatever they want. As a consequence, it is difficult do. Such studies contributed to widespread question- to compare studies, and new knowledge accumulates ing of the benefits of institutionalization and, ulti- slowly. In the end, however, it is up to researchers to mately, to the discharge of hundreds of patients from better define terms and explain the procedures they use. what was viewed as a noxious environment. Unfortu- nately, such patients were often turned out without The Consumer Point of View. Although the views of adequate provisions of aftercare, and many drifted as the consumers of services for disability are sometimes homeless people. sought, there has been little systematic effort to solicit Over the years, there have been occasional priorities and preferences. Quite often, what an indi- accounts of what life is like after a stroke, spinal cord vidual with a disability values as a contribution to his injury, or other catastrophic condition. A few individ- or her lifestyle is very different from the preoccupa- uals have sufficiently recovered from autism to chron- tions of research professionals. The usual program icle their experience. Unfortunately, most of these outcomes that are measured are often the result of descriptions have been treated as idiosyncratic accounts what can be measured rather than what is of special that do not provide insights of general interest. All of interest to the subjects studied. There needs to be a this is in spite of the professed interest in the client/ systematic method for determining client and patient patient point of view. An array of qualitative research goals at the beginning of a program and integrating methods could provide a rich source of information such views into treatment plans and outcomes. about the disability experience.

Outcome Measures for Disability. Many of the mea- The Challenge of Technology. There are accelerating sures in use in social and medical programs are either advances in the miniaturization of circuits, new mate- of a utilitarian nature, reflecting a decreased burden to rials, and computerization of devices useful to those society or to caregivers, or enhancement of personal with disabilities. It is necessary, however, to deter- skills. Newer measures such as health status, quality mine the utility of such equipment for everyday life. of life, and health-related quality of life were devel- The history of the use of lower leg braces, for example, oped without regard for applications with populations has many accounts in which individuals have dis- with disabilities. Although they are often used any- carded braces, even though they provided physiologi- way or some modifications are made, their utility is cal benefit, because they required great effort to use less than if they were tailored to the needs and priorities or were cosmetically unacceptable. The integration of of individuals with disabilities. Development of such special technology into routine life requires more than measures may be costly, but the number of individu- ever the collaboration of those for whom it is intended als with chronic diseases and injuries is easily suffi- if use is to be successful. cient to justify the effort. The shift in program goals to Assessment procedures in which patients or clients a socioecological perspective, in which better integra- must respond by computers are destined to become a tion into society is important, will also require as yet much more frequent occurrence, even if these individ- undeveloped methods of determining outcomes. uals have had no experience with this equipment. Touch screens or light pens can be used for multiple- The Subjective Experience of Disability. In the 1940s choice answers and do not require keyboard use. and 1950s, there were a number of observational Some aspects of personal and health history can be studies of the mental hospital, some of which involved obtained this way, as can responses to a variety of health researchers being admitted as patients. They were status questionnaires. Less staff time is required, and then able to experience the often needless restrictions, the responses can be instantly entered into a database, the bureaucratic rules invoked primarily for the con- but respondents may need to be trained in the use of venience of the staff, the lack of dignity with which such devices. 1408———Rett Syndrome

Disability research holds great promise for improv- ᨘ RESJA ing the lives of those with disability, but such research is a product of the social and political context in See Rehabilitation Engineering Society of which it occurs. The extent to which it is valued and Japan (RESJA) understandable dictates whether it will be used. There are no shortcuts for creditable work. It must follow scientific principles, the individuals involved must be ᨘ RESNA partners, and society must provide the resources. —Robert Allen Keith See Rehabilitation Engineering and Assistive Technology Society of North America See also Disability Studies; Epidemiology; Models; Outcome (RESNA) Measures; Translating Theory and Research into Practice.

Further Readings ᨘ RETT SYNDROME Buysse, V. and D. B. Bailey, Jr. 1993. “Behavioral and Develop- mental Outcomes in Young Children with Disabilities in Rett syndrome is a progressive developmental disorder Integrated and Segregated Settings: A Review of Comparative Studies.” Journal of Special Education 26:434–461. associated with intellectual disability, growth retarda- Jørgensen, H. S., H. Nakayama, H. O. Raaschou, K. Larsen, tion, loss of speech and motor skills, and emergence of P. Hübbe, and T. S. Olsen. 1995. “The Effect of a Stroke Unit: stereotyped hand mannerisms. The condition is named Reductions in Mortality, Discharge Rate to Nursing Home, after Andreas Rett, an Austrian pediatrician, who first Length of Hospital Stay, and Cost: A Community-Based described the disorder in 1966. His initial description Study.” Stroke 26:1178–1182. of 22 patients remained largely unknown until 1983, Kelly-Hayes, M., A. M. Jette, P. A. Wolf, R. B. D’Agostino, and P. M. Odell. 1992. “Functional Limitations and Disability when Bengt Hagberg of Sweden and his colleagues Among Elders in the Framingham Study.” American Journal published an English-language account of an addi-

of Public Health 82:841–845. tional 35 cases. In 1999, mutations in the MCEP2 gene Lorig, L., A. Stewart, P. Ritter, V. Gonzalez, D. Laurent, and were identified in almost one-third of a sample of 21 J. Lynch. 1996. Outcome Measures for Health Education and individuals with Rett syndrome. Further analyses sug- Other Health Interventions. Thousand Oaks, CA: Sage. gest that mutations within this region may account for Pope, A. M. and A. R. Tarlov, eds. 1991. Disability in America. Washington, DC: National Academy Press. 50 to 75 percent of all cases of Rett syndrome. Renwick, R., I. Brown, and M. Nagler, eds. 1996. Quality of Life in The severity of Rett syndrome varies from mild Health Promotion and Rehabilitation. Thousand Oaks, CA: Sage. to profound. Children with Rett syndrome appear to Tate, D. G. and C. Pledger. 2002. “An Integrative Conceptual develop normally during the first 6 to 18 months of Framework of Disability: New Directions for Research.” life, although subtle problems in muscle tone, posture, American Psychologist 58:289–295. and movement may be evident from birth. The Taub, E., J. E. Crago, and G. Uswatte. 1998. “Constraint-Induced Movement Therapy: A New Approach to Treatment major clinical signs of Rett syndrome are usually in Physical Rehabilitation.” Rehabilitation Psychology 43: pronounced by 2 years of age, and by 5 to 7 years of 152–170. age, most children will have progressed to the fourth World Health Organization. 2001. International Classification and final stage of the disorder. Clinical features that of Functioning, Disability and Health. Geneva, Switzerland: emerge over this period include loss of muscle tone, WHO. deceleration of head growth, seizure disorder, loss of Websites acquired speech, and deterioration of motor skills, with mobility and functional hand use being signifi- Canadian Council on Social Development, http://www.ulc.edu/ cantly impaired. One of the more distinctive features orgs/sds/links.html National Institute on Disability and Rehabilitation Research, of Rett syndrome is the nearly constant stereotyped http://www.ncdrr.org/rpp/lrp_ov.html hand mannerisms, which typically involve rubbing, Nordic Network on Disability Research, http://www.skur.no wringing, and washing-like movements. Right to Work———1409

The condition primarily affects females, but similar Kerr, A. M. and D. Ravine. 2003. “Review Article: Breaking New symptoms have been described in males. Overall preva- Ground with Rett Syndrome.” Journal of Intellectual lence is estimated at 1 in 10,000 to 1 in 15,000 female Disability Research 47:580–587. Rett, A. 1966. “Uber ein eigenartiges hirnatrophisches Syndrom births, making it the single most common cause of bei Hyperammonamie im Kindesalter” [“On an Unusual severe developmental and physical disability in females. Brain Atrophic Syndrome with Hyperammonemia in As the identification of Rett syndrome improves through Childhood”]. Vienmedizinische Wochenschrift 116:723–726. refined laboratory tests, estimates of prevalence are Sigafoos, J., ed. 2001. “Rett Syndrome” [Special issue]. Disability likely to change and become more accurate. & Rehabilitation 23(3/4). There is no cure for Rett syndrome, and the prognosis for significant improvement in the cogni- ᨘ tive, social, and motor domains is poor. Still, quality RIGHT TO WORK of life can be improved by providing opportunities for participation in meaningful and preferred activities. At the beginning of the twenty-first century, for the A multidisciplinary treatment approach is recom- first time in history, international social, economic, mended, with treatment focused on maintaining and political forces are acting in concert to promote health and including provision of physical, occupa- widespread labor force participation of people with tional, music, and speech therapy. Communication is disabilities. The United Nations (UN) has acknowl- a major area of need. Even when some speech is pre- edged the right of individuals with disabilities to served, individuals with Rett syndrome generally rely work, in order to promote equal opportunity and pro- on informal body movements and facial expressions tection from poverty. The economic contributions of to communicate. Some can be taught to use augmen- workers with disabilities can no longer be ignored tative communication devices to indicate basic wants in a constantly changing global economy, interlinking and needs. There has been some success in reducing notions of work and citizenship. At the same time, an stereotyped hand movements through behavior international movement of political activism among modification. Individuals with Rett syndrome are often people with disabilities promotes a social theory of aware of and responsive to others and will therefore disability in which employment is seen as one route to benefit from integration experiences in typical class- community inclusion and protection of civil rights, room and community settings. With regular and sound albeit not the only route. multidisciplinary management, many individuals with Rett syndrome can be expected to survive into adult- hood, although death from malnourishment is not INTERNATIONAL AFFIRMATION uncommon, and some otherwise healthy individuals OF THE RIGHT TO WORK may die suddenly from cardiorespiratory problems. The UN Convention on the Protection and Promotion —Vanessa A. Green and of the Rights and Dignity of Persons with Disabilities Jeff Sigafoos has proposed a series of fundamental principles for member nations. Article 22 of the convention is titled See also Developmental Disabilities. “Right to Work” and affirms that the opportunity to make a living doing work that is “freely chosen” in Further Readings the “open labour market” is a basic human right. The Amir, R. E., I. B. Van den Veyver, M. Wan, C. Q. Tran, U. Francke, need to protect workers with disabilities against dis- and H. Y. Zoghbi. 1999. “RS Is Caused by Mutations in crimination in hiring, working conditions, pay, and x-Linked MECP2, Encoding Methyl-CpG-Binding Protein 2.” advancement is affirmed in the article. Perhaps most Nature Genetics 23:185–188. important, recognizing that people with disabilities Hagberg, B., J. Aicardi, K. Dias, and O. Ramos. 1983. “Progressive Syndrome of Autism, Dementia, Ataxia and are “the poorest of the poor,” an explicit connection Loss of Purposeful Hand Use in Girls: Rett’s Syndrome: is made between employment and “protection from Report of 35 Cases.” Annals of Neurology 14:471–479. poverty.” 1410———Right to Work

THE INTERNATIONAL EMPLOYMENT group model” of disability. This new paradigm views STATUS OF PEOPLE WITH DISABILITIES disability as an interaction between characteristics of an individual and features of his or her cultural, social, Around the globe, people with disabilities live on lower natural, and built environments. In this framework, incomes, receive less education, and have fewer job disability does not lie within individuals but in the opportunities than their nondisabled counterparts, as interface between their characteristics (such as their revealed by international research statistics, as well as functional status or personal or social qualities) and discussions among participants at the UN convention. the nature of the environments in which they operate. In Latin America, for example, 75 percent of people Put simply, the old paradigm views a person with a with disabilities are not employed. More than two- disability as someone who cannot function because of thirds of British citizens with disabilities are out of the an impairment, whereas the new paradigm views this labor force or underemployed. Legislation in many person as someone who needs an accommodation to countries forbids citizens with disabilities from enter- function. ing certain professions. In countries with high unem- Use of this new model shifts the focus away from ployment, the labor market exploitation of disabled being solely on the individual to one that equally workers is often greater, so that when they do have encompasses the environment. It highlights how the access to jobs, these positions are often poorly paid environments of people with disabilities often are and concentrated in a limited number of stereotypical socially isolating, economically constraining, legally occupations. Women with disabilities face particularly exclusionary, and emotionally unsupportive. It also severe consequences of unemployment and associated directs the search for solutions and remedies away poverty. In countries with publicly funded disability from the sole concentration on “fixing” individuals income support programs, large numbers of individuals by correcting their deficits to removing barriers and with disabilities are trapped in poverty by income sup- creating access through accommodation and reorgani- port policies that act as disincentives to employment. zation of “disabling environments.” It acknowledges that the “employment problem” for people with POLITICAL ACTIVISM IN disabilities is due to faults in national and global THE DISABILITY COMMUNITY economies and not deficiencies of individual workers. Concomitantly, the source of potential interventions At the same time, a new conceptualization of disabil- expands beyond health professionals and clinical/ ity has emerged that emphasizes community inclusion, rehabilitation service providers to include peers, accommodation, and protection of civil rights over the mainstream providers, and consumer advocacy and traditional focus on assessing impairment and remedi- information services. Most important in the new para- ation of functional deficits through professional digm, the role of the person with a disability shifts services. Called the new paradigm, the social model, away from being an object of intervention or a patient or the sociopolitical model, this new way of thinking toward one of a customer, empowered peer, decision about disability has its roots in the many political maker, and agent of social and political change. movements that grew out of the social protest and civil Because these new paradigms have not been rights era of the 1960s. For example, the international universally embraced, both national and international disabled people’s movement in the 1960s and the inde- disability policy continues to lack coherence and pendent living movement of the 1970s sought a better direction. Much disability policy around the world has quality of life for people with physical disabilities remained rooted in economic paradigms that pit bene- through equal opportunity and dignified treatment. fits for individuals with disabilities against costs to the By the 1980s, disability rights advocates endorsed rest of society, thus reinforcing the medical rehabilita- shifting the definition of disability from a focus on func- tion model. In other countries, no formal disability tional impairments and limitations to a sociopolitical policies exist, or a laissez-faire, de facto policy of perspective by means of a civil rights–based, “minority benign neglect characterizes the approach that is taken. Right to Work———1411

LABOR FORCE DYNAMICS of disability is defined by the ways in which a society VIEWED THROUGH THE organizes its productive activity, significant advances NEW PARADIGM OF DISABILITY in employment for people with disabilities can only occur through a “radical reformulation” of the mean- Use of the new paradigm allows for a more compre- ing and organization of work. This requires changes hensive understanding of the place of people with in the fact that productive activity in much of the disabilities in the labor market and, especially, labor Western world reflects values such as profit maxi- force dynamics for people with disabilities. This mization, competition among organizations and their involves acknowledging that people with disabilities workers, and waged labor. It is these values, as well as are both similar to and different from those without the practices that stem from them, that limit or “dis- disabilities in their labor force attachment, experi- able” people with perceived impairments, rather than ences, and decision making. In the United States, for the functional limitations themselves. As long as work example, studies have shown that, while people with is organized around these principles, the inclusion disabilities experience proportionally larger gains in of people with disabilities in productive activity is employment during periods of market expansion, they unlikely to bring about large-scale improvement in also evidence greater losses during times of market their economic circumstances. Such skepticism contraction than people without disabilities. regarding the role of employment in the emancipation The vulnerability of those who return to work of individuals with disabilities is tied to the call for while on the public disability insurance rolls in the governments to adopt more interventionist labor mar- United States is evident from studies showing that ket policies to encourage full integration. Disability most reenter the labor force because of financial need advocates remind us of the long tradition in Western rather than medical improvement. Those who do government of labor market restructuring through tax return to work tend to be younger and better educated breaks and funding for business and industry to stim- than those who do not. Their initial jobs after reentry ulate economies and enhance national security. In line are lower paying and for fewer hours than the job held with this thinking, members of the UN committee dis- prior to disability onset, and they tend not to return cussed encouraging member nations to pursue active to their previous employers. Finally, while workplace labor market policies as part of promoting employ- accommodations may extend the average duration of ment opportunities. employment, there is evidence that injured workers who receive job accommodations “pay” for these TRENDS IN GLOBAL WORKFORCE accommodations in the form of lower wages. GROWTH AND LABOR DEMAND These findings support the notion that return to work following onset of disability is a complex phe- Current trends in the worldwide labor market indicate nomenon encompassing more than the individual’s the occupational context within which job training and level of impairment and functional limitations. Other employment placement will be occurring over the com- factors, such as employers’ attitudes, labor market ing decades. Increasing economic globalization and conditions, availability of workplace accommodations, technological advances have shifted the economy from and prior employment, all are part of the environmen- a focus on “primary production” to one of “postprimary tal context that is critical to understand. production,” in which human services are the primary Most recently, disability scholars have questioned source of employment and information technology has the notion that workforce participation can be the sole replaced material production. For example, U.S. labor or even the most important route to social inclusion market projections indicate that the occupations with and emancipation. They argue that oppression of people the largest job growth are expected to be retail trade, with disabilities reflects a devaluing of impaired business services (including computer-related jobs), modes of being, which can never be fully corrected by health services, and public and private education (includ- inclusion in productive activity. Since the very nature ing health care providers, teacher aides, teachers, and 1412———Right to Work professors). Also, self-employment is expected to and provide their own accommodations. A trend increase by almost 15 percent. toward services and supports delivered by peers with Some have argued that these new forms of produc- disabilities is growing in many countries. However, in tion and technological advances offer unprecedented many others, access to vocational rehabilitation is employment opportunities for people with disabili- severely limited or nonexistent. ties. Environmental changes in workplace technology, telecommunications, and transportation systems have NEW ROLES FOR EMPLOYERS made the workplace more accessible to people with all kinds of disabilities through expanded transporta- With expansion of the global economy, businesses tion options and Internet technology. For example, have changed through downsizing and outsourc- mobility-impaired individuals can have enhanced ing, resulting in such phenomena as the flattening of access to job opportunities through the World Wide workplace hierarchies and the erosion of job security. Web, a setting that already has been the focus of These trends suggest the need to incorporate employ- rehabilitation efforts. ers and their organizations into the vocational rehabil- On the other hand, new technologies must be acces- itation process. Employers have been characterized sible to people with disabilities if these alterations as the “forgotten partners” in vocational rehabilitation in the organization of work are to be advantageous. efforts. Especially relevant to the new paradigm of Increased funding to enhance innovation and afford- disability are models of collaboration with business ability of assistive technology and universal design are communities, which view the employment of people essential. Accessibility to advanced telecommunica- with disabilities as a socioenvironmental issue that tions and transportation systems remains a major advo- can be addressed by a “trilateral” approach involving cacy issue, with primary influence on an individual’s employers, consumers, and service providers. The UN likelihood of employment. In developing countries, committee recognized the need to encourage employ- access to advanced technology is limited among both ers to hire workers with disabilities through affir- nondisabled and disabled populations, pointing to the mative action programs, incentives, and quotas. Also need to bridge the international digital divide. acknowledged was the need to educate employers about disability-related job discrimination and reason- able accommodations in the workplace. THE NEED FOR REHABILITATION

In its statement of Right to Work, the UN committee THE INTERACTION OF called for increased access to technical and vocational DISABILITY AND POVERTY guidance programs, placement services, and employ- ment training, along with vocational and professional Poverty co-occurs with disability around the world. rehabilitation and return-to-work programs. The latter In Western countries, this persists despite a series of point highlights the importance of carefully integrat- public disability benefits and entitlements, including ing people with disabilities into mainstream government- cash payments, vouchers, and other income support sponsored employment programs to eliminate poverty. mechanisms. In countries without nationalized health Special mention was made of “self-employment and care, such as the United States, disability beneficiary starting one’s own business,” acknowledging the impor- status provides the only access to medical and mental tance of building entrepreneurial skills as part of the health treatment, and the need to protect this benefit rehabilitation process. In public discussions, some leads many citizens with disabilities to forgo or limit UN participants felt that this model applied especially their labor force participation. Yet even in countries for women with disabilities. Others noted that entre- with universal health care access, individuals risk preneurship provides people with greater freedom to their economic safety net when they work. participate in the economic sector of their own Providers of vocational rehabilitation services must countries since they can act as their own employers be cognizant of service consumers’ individual situations Risk and Risk Selection Related to Insurance———1413 regarding eligibility for disability income and how they 2001 Switzer Monograph. Washington, DC: U.S. are affected by employment. Financial planning involv- Department of Education. ing the sharing of accurate information is required so Cook, J. A. and J. A. Burke. 2002. “Public Policy and Employment of People with Disabilities: Exploring New that consumers can consider the relative advantages Paradigms.” Behavioral Science and the Law 20(6): and disadvantages of different work options. This means 541–557. that the alleviation of poverty is explicitly addressed as Cook, J. A., H. S. Leff, C. Blyler, P. B. Gold, R. W. Goldberg, part of the vocational rehabilitation process. K. T. Mueser, et al. 2005. “Results of a Multi-Site Randomized Intervention Effectiveness Trial of Supported Employment Interventions for Individuals with Severe Mental Illness.” SUMMARY AND CONCLUSIONS Archives of General Psychiatry 62:505–512. DeJong, G. 1979. “Independent Living: From Social Movement to In conclusion, guaranteeing the right to work of Analytic Paradigm.” Archives of Physical Medicine and people with disabilities might best be characterized as Rehabilitation 60:435–446. necessary but not sufficient to promote social integra- Hahn, H. 1986. “Public Support for Rehabilitation Programs: The Analysis of U.S. Disability Policy.” Disability, Handicap & tion and full participation. Without a reorganization of Society 1:21–137. the values underlying the concept and organization of Kaye, H. S. 2000. Disability and the Digital Divide. Disability social production, labor force participation alone will Statistics Abstract Rep. No. 22. Washington, DC: U.S. not combat oppression. In the meantime, however, as Department of Education, National Institute on Disability stated in the UN article on “Social Security and an and Rehabilitation Research. Adequate Standard of Living,” in today’s economy, Watson, S. D., B. P. Tucker, M. S. Baldwin, and B. L. O’Day. 1994. “Discrimination on the Basis of Disability: The Need “the best guarantee for independence and social secu- for a Third Wave Movement.” Cornell Journal of Law and rity is employment.” Public Policy 3:253–302. It is hoped that tomorrow’s global economy can Yelin, E. 2001. “The Impact of Labor Market Trends on the be restructured through international policies so that Employment of Persons with Disabilities.” American employment is only one of the tools of emancipation Rehabilitation 26:21–33. from oppression available to people with disabilities. United Nations Enable. 2003. U.N. Convention on the Protection and Promotion of the Rights and Dignity of Persons with —Judith A. Cook, Jane K. Burke-Miller, Disabilities: Draft Articles. Retrieved June 26, 2005 (www and Lisa A. Razzano .un.org/esa/socdev/enable/rights/ahcwgreporta22.htm).

See also Citizenship and Civil Rights; Employability; Employ- ᨘ ment; Employment, International; Human Rights; Worksite RISK AND RISK SELECTION Modification. RELATED TO INSURANCE

Further Readings In this entry, the concepts of risk and risk selection in Abberly, P. 1999. “The Significance of Work for the Citizenship of the insurance industry are discussed in the context Disabled People.” Paper presented at University College, of the disabled community in the United States. Risk Dublin, Ireland, April 15. Retrieved June 29, 2005 in the insurance industry is a condition in which there (www.leeds.ac.uk/disability-studies/archiveuk/Abberley/ is a possibility of an adverse deviation from a desired sigofwork.pdf). Baer, R., T. Simmons, E. Martonyi, and R. W. Flexner. 1994. outcome that is expected or hoped for. The undesir- “Employer Collaboration: A Tri-Lateral Group Process able event is the adverse deviation, and insurance Model.” Journal of Rehabilitation Administration 18:151–163. coverage is an attempt to provide protection from the Barnes, C. 1999. “A Working Social Model? Disability and Work undesirable event. Illness and injury would be unde- in the 21st Century.” Paper presented at the Disability Studies sirable health insurance events. Conference and Seminar, December, Edinburgh, Scotland. Adverse selection is the tendency of persons with a Retrieved June 29, 2005 (www.leeds.ac.uk/disability-studies/ archiveuk/Barnes/Edinbrg2.pdf). higher than average probability of loss to seek or con- Blanck, P. D. and H. A. Schartz. 2000. Towards Researching a tinue insurance to a greater extent than do persons National Employment Policy for Persons with Disabilities. with an average or below-average probability of loss. 1414———Risk and Risk Selection Related to Insurance

While an insurer will provide health insurance coverage and can affect long-term financial strength and the to policyholders, the company must protect itself from company’s ability to meet its obligations to policy- excessive financial losses and examine its spread of holders. In analyzing a private insurance company’s risk by line of business, thereby avoiding a concentra- financial strength, a company’s book of business is tion of risk. Health insurance coverage to the disabled assessed by line in terms of its geographic, product, community presents the insurer with a business chal- and distribution diversification. lenge in providing coverage, and the insurer will con- Large companies usually write conservative lines sequently do so in a manner that limits its risk. of business and avoid a concentration of risk. It would follow that insurance companies will avoid writing insurance policies, be it life or health, to policyholders INSURANCE ACCESS who presented an untoward risk of injury or death. A The initiatives to guarantee health care access have companion issue with that of insurance risk in writ- been incremental since the introduction of Medicare ing a policy is the issue of adverse selection. Adverse and Medicaid in 1965. While new delivery models selection occurs if those who elect to participate in the were introduced to promote patient access to providers, program are sicker than average, and program costs the ability to pay for services ultimately guarantees may exceed expectations and/or premiums to partici- access to providers. The number of people without pants may have to increase. health insurance increased by 2.4 million, the largest Adverse selection may cause the insurer to include increase in a decade, raising the total to 43.6 million. waiting periods for preexisting conditions and limited The increase brought the proportion of people who benefits (such as exclusion of mental health coverage) were uninsured to 15.2 percent, from 14.6 percent in in an effort to control selection. In addition, insurance 2001 and 13.6 percent in 2000. deductibles are used in property, liability, and health Estimating health insurance demand is difficult to do insurance. The purpose of the deductible mechanism because of the way health insurance is purchased in the is generally to reduce problems with moral hazard by United States. Almost 90 percent of insured individuals requiring that the insured take some responsibility for younger than 65 years of age obtain coverage from loss payments. Coinsurance and maximum limits also their employer or as dependents of a family member arise as a result of adverse selection in a competitive with group-sponsored health insurance. Insurance for insurance market. This is the rationale for the insur- medical expenses and for loss of income due to disabil- ance questionnaire prior to a policy being written that ity is provided by three basic sources: individual insur- requests information of a policyholder’s education ance policies, employee benefit plans (including fully and drinking and driving habits, as well as access to insured, partially insured, and self-insured programs), medical records to verify various medical conditions and social insurance, including the Old Age, Survivors, that may or may not be covered in the policy. The and Disability Insurance (OASDI); Medicaid; and company is prospectively attempting to determine the Workers Compensation programs. potential risk of writing a policy to the insured. From the perspective of an insurance company, the THE INSURANCE key consideration is whether it can charge a premium PERSPECTIVE ON RISK rate that reflects the expected cost of a potential enroll- ment group. The primary purpose of insurance is a Competing with the public’s demand for insurance is controlled spreading of risk across the entire insured the business interest of the insurance company itself. population. For example, with experience rating, the An insurance company is an enterprise in the busi- insurer estimates the premium based on the past cost ness to make a profit through the sale of policies to experience of the group and then offers a self-supporting prospective policyholders. Business profiles are devel- premium rate to that group that covers expected med- oped on an insurance company by various rating ser- ical costs, administrative expenses, other loadings, and vices that drive current and future operating performance a profit. Therefore, obtaining insurance coverage is Risk and Risk Selection Related to Insurance———1415 not precluded just because a group is higher than DISABILITY INSURANCE SOURCES average cost, but there must be an insurance market for persons/groups of that type, and insurance compa- Risk and adverse risk selection are managed differ- nies must be willing to offer coverage to those groups. ently based on insurance source. The Social Security If an insurer can make a reasonable profit (and accu- Act established Medicare and Medicaid in 1965. rately estimate the cost of the group), then it is likely Medicare extended health coverage to Americans age that insurance is feasible. Risk adjustment methods 65 or older, disabled persons receiving cash bene- are another way of estimating costs for groups that fits for 24 months under the Social Security program, have varying levels of risk (in addition to experience and persons suffering from end-stage renal disease. rating). Medicare provides health benefits to 41 million Managed care is another relevant concept in the elderly and disabled Americans. Medicaid is a pro- insurance market. For example, for mental health and gram that pays for medical assistance for certain indi- substance abuse services, a managed care organiza- viduals and families with low incomes and resources. tion can provide care at a cost that is under a fee- The program is jointly funded by federal and state for-service and unmanaged arrangement. In addition governments. Medicaid covers 47 million low-income to cost containment, managed care organizations people, including 24 million children, 11 million (MCOs) usually provide greater access to care (a higher adults, and more than 13 million elderly and disabled percentage of users), although more care is outpatient, people. and inpatient care is substantially reduced (in the Workers’ Compensation is insurance coverage, MCO). The same group of disabled persons may receive purchased by the employer, that covers occupational a number of different premium rates from different accidents and illnesses. Musculoskeletal disorders insurers (assuming there is a market), and at least part (MSDs) are the most prevalent and expensive work- of the cost difference is a result of the level of cost related injuries in the United States. These MSDs containment that the insurer can achieve. are injuries and disorders of the muscles, tendons, ligaments, nerves, joints, cartilage, and supporting structures, such as spinal disks, which account for at DISABILITY least one-third of all work-related injuries. Around 1.8 There is no consensus definition of disability that suits million workers report work-related MSDs, and about all purposes. While the U.S. Social Security Adminis- 600,000 miss work due to MSDs each year. The final tration defines disability in terms of functional limita- source for insurance is the individual nongovern- tions as they affect employability, the Americans with mental market, developed to fill the gaps left by the Disabilities Act (ADA) defines disability as a physical employer market, including self-employed persons, or mental impairment that limits one or more major graduate students, short-term and part-time workers, life activities. The point to be made here is that dis- unemployed or soon-to-be displaced workers (pend- ability includes a number of physical, psychological, ing layoff), the smallest of small business that cannot and medical conditions from arthritis, congenital anom- obtain group coverage, and persons before they are alies, depression, HIV, hearing and vision impairment, eligible for Medicare. The individual nongovernmen- multiple sclerosis, and impairment following an acci- tal market served an estimated 16 million Americans dent or medical episode, among others. in 2001. The context of the disability condition and its corresponding disability time period, be it short or of THE DISABLED AND a lengthy duration, will determine the type of insur- THEIR HEALTH NEEDS ance that is warranted. Ultimately, disabled people will have to be their own advocates to gain access to insur- Twenty-eight percent of insured people with disabili- ance and to monitor claims payment to the provider ties reported that they needed particular therapies, by their insurance. equipment, or medications that were not covered by 1416———Risk and Risk Selection Related to Insurance their health plans, compared to 7 percent of those Further Readings without disabilities. Nineteen percent of disabled Best, A. M. 2003. Best’s Insurance Reports: Life/Health United persons reported that they needed medical care within States and Canada. Oldwick, NJ: A. M. Best. the previous year but did not get it, compared to 6 Census Bureau. 2003. Current Population Reports. Washington, percent of nondisabled persons. Persons with disabil- DC: U.S. Census Bureau. ities attributed these failures to a variety of factors, Davis, Karen, Cathy Schoen, Michelle Doty, and Katie Tenney. 2002. “Medicare versus Private Insurance: Rhetoric and including lack of insurance coverage (35 percent), Reality.” Health Affairs, October 9, pp. w311–w324. high costs (31 percent), difficulties or disagreements Long, Stephen H. and M. Susan Fall Marquis. 2002. with doctors (8 percent), problems getting to doctor “Participation in a Public Insurance Program: Subsidies, offices or clinics (7 percent), and inadequate trans- Crowd-Out, and Adverse Selection.” Inquiry 39:243–257. portation (4 percent) (Reis et al. 2004). Reis et al. Lundberg, Thomas and Lynn Tylczak. 1997. “Our Safety Systems: (2004) report that people with disabilities typically Workers Compensation and the OSHA Act.” Pp. 1–22 in Slash Your Workers’ Compensation Costs: How to Cut Premiums have a “thinner margin of health” due to their impair- Up to 35% and Maintain a Productive and Safe Workplace. ments and functional limitations, fewer opportunities New York: AMACOM. for health maintenance and preventive health care, Marquis, M. Susan and Stephen H. Long. 1995. “Worker Demand earlier onset of chronic health conditions, suscepti- for Health Insurance in the Non-Group Market.” Journal of bility to secondary functional losses, and, not uncom- Health Economics 14:47–63. monly, a need for complicated and prolonged O’Grady, Frank T. 1988. “Introduction.” Pp. 1–6 in Individual Health Insurance, edited by Frank T. O’Grady. Itasca, IL: treatments. Society of Actuaries. The insurance needs of the disabled community are Patel, Vip. 2002. “Raising Awareness of Consumers’ Options varied and diverse. Clearly, one insurance source will in the Individual Health Insurance Market.” Health Affairs, not satisfy all needs. A person who becomes disabled October 23, pp. w367–w371. for a temporary or protracted time period will have to Pear, Robert. 2002. “HMO’s for 200,000 Pulling Out of investigate his or her insurance needs and act as an Medicare.” New York Times, September 10, p. A22. Powers, Michael R. and Larry Y. Tzeng. 2001. “Risk advocate to make sure his or her needs are met. Transformations, Deductibles, and Policy Limits.” Journal of Risk and Insurance 68(3): 465–473. Reis, Judy Panko, Mary Lou Breslin, Lisa Iezzoni, and Kristi L. CONCLUSION Kirschner. 2004. “The Case for Disability Competent Health Services in Hospitals and Health Facilities: With Recommen- Insurance risk examines the probability of illness, dations from Stakeholders.” Unpublished working paper, disease, and injury along with the duration of each. Rehabilitation Institute of Chicago. Adverse selection is the prospect that an insurer will Rothschild, M. and J. E. Stiglitz. 1997. “Competition and enroll those who are sicker than average, thereby increas- Insurance Twenty Years Later.” Insurance: Mathematics and Economics 20(3): 73–80. ing their medical and administrative costs. Market forces Seo, Dong-Chul and Earl Blair. 2003. “Ergonomics Rulemaking: in the private health insurance market dictate that an Dissecting OSHA’s Cost-Benefit Analysis Offers Insight for insurer enroll those who are healthy and who will make Future Rulemaking.” Professional Safety 48(4): 37–43. limited demand of the insurer. A prospective insured Shactman, David and Stuart Altman. 1998. “The Impact of with an excessive need for health care services would Hospital Conversions on the Healthcare Safety Net.” Pp. 189– not be a financially viable group for a private insurer. 206 in The Future U.S. Healthcare System: Who Will Care for the Poor and Uninsured? edited by S. H. Altman, U. E. Workers’ Compensation, Medicare, and Medicaid have Reinhardt, and A. E. Shields. Chicago: Health Administration provisions for those who become incapacitated for short Press. and permanent time periods. Vaughan, Emmett J. and Therese M. Vaughan. 1996. Fundamentals of Risk and Insurance, 7th ed. New York: John Wiley. —Diane M. Howard and Wrightson, Charles W., Jr. 2002. Financial Strategy for Managed Charles William Wrightson Care Organizations: Rate Setting, Risk Adjustment, and Competitive Advantage. Chicago: Health Administration See also Health Management Systems; Political Economy. Press. Roberts, Ed (1939–1995)———1417

Young, Donald A. and Thomas F. Wildsmith. 2002. “Expanding Roarty, who was baptized Roman Catholic, had Coverage: Maintain a Role for the Individual Market.” great commitment and dedication to his Christian Health Affairs, October 23, pp. w391–w394. spiritual beliefs. Young, V. R. and M. J. Browne. 1997. “Explaining Insurance Policy Provisions via Adverse Selection.” The Geneva The ultimate accolade to Roarty’s commitment to Papers on Risk and Insurance Theory 22:121–134. the disability sector came in the form of the Order of Australia in 1988. Websites —Jan Daisley U.S. Department of Health and Human Services, Center for Medicare and Medicaid, http://www.cms.gov/medicaid/ See also Activism. managedcare/plansum2.pdf Further Readings

ᨘ Roarty, John. 1981. Captives of Care. Sydney, Australia: Hodder ROARTY, JOHN JOSEPH (1921–1996) & Stoughton. Author and disability rights activist ᨘ John Roarty was born on February 10, 1921, in ROBERTS, ED (1939–1995) Merewether, New South Wales, the youngest of three Founder of the independent living movement boys, to Cyril and Margaret Roarty. He was born with cerebral palsy and, as a result, was severely Ed Roberts, a John D. and Catherine T. MacArthur disabled. As well as severe spasticity in all limbs, Fellow in 1984, was one of the most recognized and he had a speech impediment. Roarty never had the admired leaders of the independent living movement advantage of a formal education. His father aban- of persons with disabilities, which began in the late doned the family when John was very young, and his 1960s. He was a founder of the independent living cen- mother got a job as a housekeeper on a property so ter concept, served as executive director of the Center she could keep the children with her. He eventually for Independent Living (CIL) in 1972–1975 and direc- became too heavy for his mother to lift and carry tor of the California Department of Rehabilitation around. from 1975–1983, and was cofounder and president On July 11, 1937, at the age of 16, he moved to of the World Institute on Disability (WID) from 1983 Weemala Nursing Home, where he resided until his until his death in 1995. Roberts contracted polio at age death. In 1971, he was instrumental in forming the 14. It left him paralyzed from the neck down. Relying Residents’ Committee. The lack of access to electric on an iron lung or a respirator, Ed became the first wheelchairs and the curfew on residents were the dri- severely disabled student at the University of California, ving issues of the day. This was one of the first pieces Berkeley. While there, he worked with the university to of direct action by residents in an institution for dis- develop a program run by and for disabled students abled people in Australia. to provide wheelchair repair, attendant referral, peer Roarty’s dream of writing his life story was real- counseling, and other services that would enable them ized when he published Captives of Care in 1981, dur- to live in the community. Due to coverage by 60 Minutes ing the International Year of Disabled People (IYDP). (CBS News) and other media, Roberts’s work to pro- He wrote, “That is what this story is about: domina- mote the concept of independent living became known tion and the power of authority, and our struggles to throughout the world. In 1996, disability and com- curb that power and assert our independence and our munity leaders created the Ed Roberts Campus, an rights as human beings” (p. 12). international center and a service facility in Berkeley, A video of the same title was produced and aired on California, in his memory. the ABC in 1982 and went on to win 11 International —Joan Leon Awards. This led to a stage production produced by John L. Simpson, a long-time friend of Roarty. See also Independent Living; Polio. 1418———Roosevelt, Franklin Delano (1882–1945)

Further Readings known. The incubation period ranges from 3 to 35 Roberts, Edward V., James Donald, Cathrine Caulfield, Herbert days, with the average period lasting between 4 and 10 R. Willsmore, Billy Charles Barner, John Rowan, and Peter days. On August 10, he spent a strenuous day with his Trier. 1998–1999. UC Cowell Hospital Residence Program family swimming and fighting a forest fire. The next for Physically Disabled Students. Berkeley: Regional Oral morning, he awoke with weakness in his left leg History Office, University of California, Berkeley. and pain in his back and both legs; by nightfall, he reg- Shapiro, Joseph P. 1993. No Pity. New York: Random House. istered a temperature of 102° Fahrenheit. His illness Websites was misdiagnosed by a local physician and by a Philadelphia surgeon, Dr. W. Keen, who was vacation- Ed Roberts Campus, http://www.edrobertscampus.org ing nearby. Keen’s diagnosis was a spinal cord infarct resulting from bladder congestion. FDR’s uncle, Fred ᨘ Delano, contacted the Harvard Infantile Paralysis ROOSEVELT, FRANKLIN Commission, whose specialist, Dr. Robert Lovett, was DELANO (1882–1945) called to Campobello, and he confirmed the diagnosis 32nd president of the United States of infantile paralysis, the term for poliomyelitis used in the early decades of the twentieth century. The central human characteristic that marked Franklin Legend has clothed FDR’s recovery from the acute D. Roosevelt (FDR) the person—his severe physical phase and his rehabilitation in myth and half-truth. In disability—was concealed during his lifetime. From reality, he was by all accounts deeply depressed dur- August 21, 1921, to April 12, 1945, every day had to ing the initial period of the fall of 1921 and the winter be planned and structured to adapt to his disability. At of 1922. After a brief stay at Presbyterian Hospital in first, he was confined to his bed at Campobello Island New York under the care of Dr. George Draper, he was in New Brunswick, Canada, while his wife ministered sent home to work with his nurse therapists, Kathleen to his physical and emotional needs. After he was Lake and Edna Rockey, who observed him daily in his transported back to his home in New York City, he struggle to sit and regain muscle strength. In an effort learned to adapt to his disability by working with to spare him the knowledge that his back muscles a nurse therapist who came to his home. After two were impaired, Draper devised a back support. Gradu- years, he could stand and ambulate with minimal ally, the paralysis in his upper extremities receded and assistance by means of braces and crutches. After was left in his legs. By October 15, he had worked seven years, he was ready to plunge back into the through a severe reactive depression, carefully masked rough-and-tumble world of politics. In his day, many by a facade of cheerfulness. His nurse therapists and men and women who held high responsibility would his physician observed an extraordinary sensitivity have broken under such intense strain. Not one in a to the psychological aspects of his illness and main- thousand returned to combative political life. None tained constant emotional support. His knees were except Roosevelt became a world figure. contracted and very painful; although he regained power in his hip muscles, he could not walk. Despite THE POLIO ATTACK considerable stress, his therapists observed that he was a compliant patient. In July 1921, FDR testified before a congressional FDR’s illness placed an enormous burden on his committee investigating homosexual acts at a Newport, family. His wife, Eleanor, and their five children Rhode Island, naval training station. He had been the adapted to a husband and father who had previously assistant secretary of the Navy in the administration of been active in state and national politics and who now President Woodrow Wilson. On the way back to his was confined to home and a limited existence. His summer home in Campobello, he stopped briefly at a mother, Sara Delano Roosevelt, wanted him to return Boy Scout camp in New York. Whether he contracted to their country estate at Hyde Park, New York, and poliomyelitis in Washington or in New York is not assume the role of a country gentleman. His political Roosevelt, Franklin Delano (1882–1945)———1419 adviser, Louis Howe, kept up a constant stream of humanitarianism came much later after he had had political correspondence to feign an active political the polio attack. Frances Perkins, FDR’s secretary of life. FDR became the center of a titanic struggle for his labor, who knew him before and after the polio, said soul and his future career, as was observed in the cor- he changed enormously, that he broadened his sympa- respondence from Draper to Lovett: “I was able to see thies for the underdog and the underprivileged. During with a better perspective the intense and devastating his long rehabilitation, he came into contact with ordi- influence of the interplay of these high voltage person- nary citizens who had suffered polio, and he main- alities one upon another.” In June 1922, he went to tained correspondence with people disabled from Phillips House at the Massachusetts General Hospital polio throughout the United States and Canada. in Boston to be fitted for a new set of braces. His Polio taught him to be patient and to bide his time departure for Boston broke the tension in the Roosevelt for an appropriate reentry into politics. He was moving household. As long as he remained in New York, he toward progressive positions in state and national pol- assumed the sick role. When he returned, he had made itics before the polio, but he was no flaming liberal. his adjustment, and in the words of Albert Brewster, a The 1920s was a period of conservatism and isolation young doctor who knew him in Boston, he was always from foreign affairs. Although he nominated Al Smith smiling and seemed to have a charming personality for the presidency in 1924, he did not take an active undisturbed by all of the attention around him. role in politics until 1928, when he ran for governor Two years after the poliomyelitis attack, Roosevelt of New York. When the stock market crashed in 1929, had learned to manage with braces and crutches, but leading to the Great Depression, he was ready to there was no restoration of permanently atrophied assume the leadership of the Democratic Party. Polio muscles. His last visit to Lovett showed only a trace of gave him the chance to gain greater knowledge of the motion in the quadriceps on the right side and none problems of poverty, to enlarge and broaden his circle on the left side, hip flexion was poor bilaterally, and of friends, and to concentrate on his political goals. In bowel, bladder, and sexual functions were left undi- 1932, the nation and the world needed a leader who minished. Although he vowed to walk independently, was as strong and clever as the European dictators. The he never walked again without the assistance of a nation was paralyzed by fear and economic depres- strong person holding his weak left side. sion. Roosevelt’s triumph over his personal disability became a metaphor for national regeneration. During POLITICAL IMPACT OF HIS DISABILITY his 12-year presidency, there was increased attention paid to people with disabilities, through congressional Prior to 1921, FDR was perceived as a highly ambi- legislation and through periodic charitable drives for tious, rather supercilious young man whose social people with polio, most significantly the March of contacts were composed entirely of people in the Dimes. Perhaps the greatest contribution to the aware- higher political and diplomatic circles in Washington. ness of disability was Roosevelt himself, transferring Although he had successfully run for the New York from a chair to a standing position with the help of an state senate in 1910 and was familiar with the condi- aide, ambulating awkwardly to the podium, and grip- tions of city slums at the turn of the twentieth century, ping the lectern while deflecting the crowd’s attention he had little contact with the working classes and no with his magnificent smile. contact with the problems of rural poverty in the Deep South. Those who knew him at Groton, a private pre- POST–POLIO SYNDROME paratory school, and Harvard College remembered him as extremely ambitious to be popular but also as Since FDR’s death, new information has been discov- a snob who seemed ill at ease with people outside of ered about the late effects of poliomyelitis. Whereas his social group. One Harvard classmate who worked polio was considered in his era to be a viral illness with him on the college newspaper said he did not that had marked effects on breathing, movement, and have the common touch at all and that all of his sensation up to 2 years following the initial attack, 1420———Roosevelt, Franklin Delano (1882–1945) it was not expected to progress or cause weakening of from 170/88 to 240/130. Despite occasional chest muscles that had not been initially affected. Patients pain, with one notable episode of substernal pain, often regained strength in some muscles and learned FDR avoided an acute myocardial infarct or stroke to sit, stand, and ambulate by a regimen of exercises until April 12, when he died from a massive cerebral and physiotherapy, such as FDR had undertaken. hemorrhage. He was 63. Studies in rehabilitation over the past 20 years, The confirmation of post–polio syndrome (PPS) reviewed by Halstead (2004), have demonstrated a cannot be made from Bruenn’s clinical notes. The wide variety of symptoms experienced by former only evidence we have is completely anecdotal. polio patients, ranging from 20 to 70 years after the Members of his family and of his inner circle of White polio infection. These symptoms are summarized as House aides reported that he had lost muscle strength fatigue, decreased muscle endurance, muscle pain, and endurance as early as 1941. The evidence is con- joint pain, weakness in previously affected muscles sistent with current criteria for diagnosing PPS after and in unaffected muscles due to disuse, and atrophy. 15 years of neurological and functional stability. The problem of differential diagnosis is especially dif- Moreover, he had less time for aerobic exercise such ficult with patients who are aging and have complex as swimming and for periodic rest such as frequent medical disorders that may simulate symptoms vacations due to the unprecedented stress of the world caused by polio. For example, many neurological and war. He was intolerant to cold, requiring extra warm orthopedic disorders have similar symptoms of joint blankets at home and while traveling to distant lands. pain, muscle weakness, and fatigue. Therefore, a com- After April 1944, Bruenn stopped his swimming prehensive medical examination, including an elec- in the White House pool because of hypertension. tromyogram, is necessary to confirm the existence of Although some of these symptoms may be caused by changes in muscle strength and sensation. vascular disease, they are also indicative of PPS. Did Roosevelt have post–polio syndrome? The Did the late effects of polio contribute to his medical evidence is limited by the absence of any con- hypertension and hypertensive heart disease? In my tinuous medical history from 1928 to 1944. These 16 conversations with Bruenn, he said that FDR’s blood years witnessed FDR in the governorship and the pressures were essentially normal during his first two presidency. Apart from intermittent examinations to terms. He was very active, swimming almost daily in document his health for the electorate and to treat the White House pool, traveling to Warm Springs, and chronic sinusitis by his White House physician, Ross going on frequent fishing trips for relaxation. The McIntyre, there is no record of his various illnesses. muscles in his legs were atrophied, so he used only his The laboratory reports during his presidency were arms for moving his wheelchair and for swimming. stored under a pseudonym at the U.S. Naval Hospital During the war years, polio prevented him from man- in Bethesda, Maryland, and could not be found after aging muscle weakness and getting proper rest. Other his death. The most comprehensive and authoritative causes of hypertension, such as renal disease, were report was made by Howard Bruenn, a young cardiol- absent. Hypertension and arteriosclerosis developed ogist who treated him from March 27, 1944, to April in an aging man, and polio did not have a specific 12, 1945. Bruenn diagnosed him with hypertension, effect on the elevation of blood pressure. hypertensive heart disease, left ventricular cardiac failure, and acute bronchitis. He recommended bed IMPACT ON THE rest, limited work up to four hours per day, digitalis, a DISABLED COMMUNITY light and easily digestible diet, restricted salt, codeine for cough, sedation at night for sleep, and gradual FDR’s impact on people with disabilities came from weight reduction. The gaunt, haggard facial appear- many contributions: first, he established in 1926 a ance of his last days was due to the loss of weight. center for the treatment of polio patients at Warm Bruenn treated him for 12 months with no significant Springs, Georgia. He spent four years there in an reduction in blood pressures, which fluctuated widely, attempt to restore his atrophied muscles. Although he Rousseau, Jean-Jacques (1712–1778)———1421 did not learn to walk unassisted, he did learn to use concealed his disability during his lifetime. After public canes and benefited from the psychological support of debate and controversy, a sculpture of him in a wheel- other patients. He invested two-thirds of his inherited chair now graces the memorial. The symbolism of wealth, $201,667, to acquire the property of an old Roosevelt triumphant over disability does not depend resort, including cottages, springs, and 1,200 acres of on the visible signs of braces and wheelchair but on the land, and established a modern hospital for the treat- inspiration he provided for millions of disabled and ment of the aftereffects of polio. Some of the methods able-bodied individuals throughout the world. used to exercise weakened muscles, including physio- —Richard Thayer Goldberg therapy, were adopted in a therapeutic environment shared by patients, nursing assistants, and “push boys” See also Depression; Polio; Representations of Disability, Social; who maintained a spirit of equality and teamwork. Stigma. Second, he established the Warm Springs Foundation, which hired medical specialists from Atlanta to direct Further Readings orthopedics, build new pools, and expand the facilities. Black, Conrad. 2003. Franklin Delano Roosevelt: Champion of Third, in 1937, he became the prime mover behind the Freedom. New York: Public Affairs. National Foundation for Infantile Paralysis Research, Bruenn, Howard G. 1970. “Clinical Notes on the Illness and Death Annals of Internal which raised funds for basic research to isolate the polio of President Franklin D. Roosevelt.” Medicine 72:579–591. virus and develop a vaccine. The National Foundation’s Burns, James M. and Susan Dunn. 2001. The Three Roosevelts: efforts led to the cultivation of the polio virus in a labo- Patrician Leaders Who Transformed America. New York: ratory by John Enders, Thomas Weller, and Frederick Grove/Atlantic. Robbins, as well as the development of the Salk and “F.D.R.’s Last Great Message.” 1997. New York Times, April 23, Sabin vaccines. The announcement of the Salk vaccine p. A30. Franklin D. Roosevelt: A Rendezvous with was made on the 10th anniversary of FDR’s death. Friedel, Frank. 1990. Destiny. Boston: Little, Brown. The voluntary campaign for the treatment of polio Gallagher, Hugh G. 1985. FDR’s Splendid Deception. New York: was the first widespread attempt to raise funds for a Dodd Mead. major disability. In an era when people with disabili- Goldberg, Richard T. [1981] 1985. The Making of Franklin ties were either hidden or kept at home, pretty poster D. Roosevelt: Triumph over Disability. Cambridge, MA: Abt. children with polio became models for acceptance. Halstead, Lauro S. 2004. “Diagnosing Postpolio Syndrome: Postpolio Roosevelt was used as a model who overcame his Inclusion and Exclusion Criteria.” Pp. 1–20 in Syndrome, edited by J. K. Silver and A. C. Gawne. handicaps. It was thought that FDR had learned to Philadelphia: Hanley & Belfus. stand, walk, and grasp the lectern as he made his polit- Lovett, Robert. 1976. Papers of Dr. Robert W. Lovett, 1921–1931. ical speeches. When a visitor entered his White House Boston: Francis A. Countway Library of Medicine, Harvard office or the State dining room, he was already seated. Medical School. On the campaign trail, he held the railing of the rear Perkins, Frances. 1946. The Roosevelt I Knew. New York: Viking. train car while he flashed his magnificent smile and waved to the crowd. “If Roosevelt can do it, I can do ᨘ it.” In his era, he concealed the full extent of his ROUSSEAU, JEAN-JACQUES disability in public, where his paralysis was shielded (1712–1778) from the eyes of onlookers. Photographers had an Philosopher and writer unwritten agreement to avoid showing his atrophied legs. He was never seen in public in a wheelchair until Jean-Jacques Rousseau was one of the most influen- March 1945, when he addressed Congress after mak- tial thinkers of the eighteenth century, and his work ing a strenuous trip overseas to Yalta in the Crimea. continues to inform debates on education, the state, Fifty-two years later, when the Roosevelt Memorial social welfare and morals. Rousseau spent most of his was opening in Washington, D.C., some disabled life residing in his native Switzerland and in Paris. In citizens criticized FDR for being a poor model since he the novel, Emile (1762), he addressed critical issues in 1422———Rush, Benjamin (1745–1813) education, proposing a pragmatic approach to learning He was a signer of the Declaration of Independence that focused on developing the natural proclivities of and served during the subsequent war as the physician the individual and on learning through experience. He general of the Medical Department of the Army. After thought that teachers should not invest much energy the Revolutionary War, he actively pursued the still- in trying to educate “weak and sick” children because new medical specialty of mental health and, in 1787, they would essentially end up being caretakers and became supervisor of the section of the Pennsylvania guardians. He advocated that teachers ought to devote Hospital devoted to those with psychiatric or intellec- most of their efforts to the more “promising” students. tual disabilities (or “madness” and “fatuity,” as Rush In The Social Contract (1762), he argued that individ- referred to these conditions in the writings). His uals could be more successful in facing threats in their textbook, Medical Inquiries and Observations upon lives by belonging to a society, a state, rather than the Diseases of the Mind, published near the end of by acting as individuals. The resulting “compact” Rush’s life in 1812, served for many years as an influ- between individuals about rules of behavior and ential summary of the knowledge base in the emerging sanctions for unwanted behavior sets the conditions field of psychology. In 1965, the American Psychiatric for membership in society, including both rights and Association officially designated Rush as the “father responsibilities. This work laid the foundations for of American psychiatry.” discussions of the state, welfare, and care systems for Rush wrote on occasion of the importance of the aged and disabled. Rousseau made a further con- humane treatment in terms that seem to foreshadow tribution to disability discourse in his work on politics the “moral treatment” promoted by psychiatrists in and morality. He stated that politics and morality can- the decades following Rush’s death, describing how not be separated and that the state is obligated to act patients should “taste the blessings of air, and light, in moral fashion or it will cease to exercise author- and motion, in pleasant and shaded walks in summer.” ity over its citizens. He also argued that the state is However, many of his ideas and most of his practices created to provide freedom for individuals. Thus, on were very traditional, punitive, and outdated even for individual and societal levels, Rousseau provoked dis- their time, often relying on bloodletting, restraints, cussion and took positions on issues critical to the rapid spinning, and confinement to straw-covered place of disabled people in society. cells in the basement of the hospital. —Henri-Jacques Stiker —Philip M. Ferguson

See also Citizenship and Civil Rights; Education, International; See also Psychiatry. Ethics. Further Readings Further Readings Rush, B. 1812. Medical Inquiries and Observations upon the Coleman, Patrick and Angela Scholar, eds. 2000. The Cambridge Diseases of the Mind. Philadelphia: Grigg. Companion to Rousseau. Cambridge, UK: Cambridge Shorter, E. 1997. A History of Psychiatry: From the Era of the University Press. Asylum to the Age of Prozac. New York: John Wiley. Rousseau, Jean-Jacques. [1762] 1979. Emile: Or, On Education. Translated by Allen Bloom. New York: Basic Books. ———. [1762] 1987. The Social Contract. Translated by Maurice ᨘ Cranston. New York: Penguin. RUSK, HOWARD (1901–1989) Physiatrist ᨘ RUSH, BENJAMIN (1745–1813) Conventionally considered the “father” of organized Physician and father of American psychiatry rehabilitation medicine in the United States, Rusk took his MD at the University of Pennsylvania, Rush is known equally for his political and medical trained as an internist in St. Louis, and entered the activities during the early years of the United States. Army Air Force’s Medical Corps as a major during Russell, Harold (1914–2002)———1423

ᨘ World War II. Stationed near St. Louis, Rusk was RUSSELL, HAROLD (1914–2002) exposed to the military’s bimodal system of “rehabil- Veteran and actor itation.” A patient was either “convalescent” and given few functional activities or deemed ready for duty and A disabled veteran from World War II who, after subjected to 10-mile hikes in full gear. 1945, briefly became a movie star and then a long- He designed a convalescent training program, time advocate, in a variety of roles, for war veterans incorporating psychological, physical, and vocational and people with disabilities, Harold Russell symbol- training to increase the functional state of the soldiers. ized American disabled war veterans of the World The U.S. Army embraced this model and expanded it War II era. Born in Nova Scotia, Canada, Russell to military care facilities throughout its network. At immigrated to Boston with his family in 1933 and the end of the war, Rusk took this model into civilian then worked as a butcher. He enlisted in the U.S. life. The military took the model into founding the Army the day after the . He Veteran’s Administration hospital system. trained as a paratrooper and then became a demoli- Rusk’s methodology invoked holism when reduc- tions instructor, but he never saw action outside the tionism in the medical model was particularly popu- United States. While working in the latter capacity, a lar. An experimental demonstration while he was in defective fuse exploded a charge of TNT while he the army, in which one barrack of disabled soldiers was holding it and led to the amputation of both his received intensive, holistic rehabilitation and another hands. Boyish charm and a positive attitude toward the standard “convalescent” care, dramatically showed rehabilitation recommended him to the Army docu- the functional value of Rusk’s methods to the military mentary makers, who sought a typical American bureaucracy and to civilian observers. His genial style soldier-amputee for a short training film intended to garnered him the nickname “Dr. Live-Again,” also encourage amputees to achieve normalized lives. representing the prominence of the medical model in Though Russell had no speaking part in Diary of a his early work. Sergeant (1945), his natural grace before the camera In Manhattan, he founded the Institute of recommended him to director William Wyler, who Rehabilitation Medicine at New York University, cast him as Homer Parrish in the Hollywood classic, later named for him. He began a residency training The Best Years of Our Lives (1946). Russell won two program linking physical medicine with rehabilita- Academy Awards: a Best Supporting Actor award tion (a reason for his “father” status of the field). His for his performance and a humanitarian award for public fund-raising efforts included privately lobby- inspiring disabled veterans. Though he made brief ing the powerful, publicly persuading congressional appearances in other films and on television there- budgeteers, and editing a column in the New York after, his principal activities were as an advocate Times. Central to his unifying role was membership for both veterans and people with disabilities. He on the 1943–1952 Baruch Committee on Physical helped organize the World Veterans Foundation and Medicine. He was preceded by figures such as John served as vice president of the World Veterans Fund. Coulter, George Albee, Henry Kessler, and Frank He served three terms as national commander of Krusen, who also played significant roles in estab- the American Veterans of World War II (AMVETS). lishing the twain fields of rehabilitation and physical He maintained a consulting firm, which special- medicine. ized in expanding job opportunities for the disabled. —Walton O. Schalick III Following an appointment by President Lyndon Johnson in 1964, he served as chairman of the See also Physical Medicine and Rehabilitation; Veterans. President’s Committee on Employment of People with Disabilities, in which capacity he served until Further Readings 1989. For many years, he also spoke widely on Rusk, Howard A.1972. A World to Care for: The Autobiography of advances in the field of prosthetics. The Harold Howard A. Rusk, M.D. New York: Reader’s Digest Press. Russell Foundation continues his work through its 1424———Russell, Harold (1914–2002)

International Veterans Amputee Project, which assists Further Readings disabled veterans to find and learn to use prosthetic Fawcett, Nicole. n.d. “Actor, Advocate Harold Russell Dies at 88.” limbs. Accessed June 12, 2005 (www.ican.com/news/fullpage.cfm). Russell, Harold. 1950. Victory in My Hands. London: Right —David A. Gerber Books Club. Russell, Harold and Dan Ferullo. 1981. The Best Years of My Life. See also Veterans. Middlebury, VT: Paul S. Eriksson. CHRONOLOGY

1500 BCE Egypt: The Ebers Papyrus, a medical textbook, devotes an entire chapter to eye diseases. It also shows that deafness is well understood and that clinical knowledge has developed.

400 BCE Graeco-Anatolian Hippocratic writings coin the word epilepsy for a convulsive condition they view as a disease rather than a possession or punishment. Today, it is estimated that more than 80 percent of the 40 million people who currently have epilepsy throughout the world have little access or no access to contemporary treatments.

300 BCE China: The Yellow Emperor’s Internal Classic is the first text to outline acupuncture. Ordinances on emergency relief for the disabled date to the Han Dynasty, 206 BCE–AD 220. Fiscal and administrative disability classification date at least to the Tang Dynasty, 618–907. 1250– High point of medieval medicalization during which theoretical explanations for conditions gain 1350 currency in Western Europe. Prior to this time, in the most general of terms, lay explanations held more sway, ranging from the superstitious to the spiritual to the vindictive. With the founding of the universities, medical theory, typified by the four humors, became more influential in governmental, legal, and elite social circles. Disabling conditions like epilepsy, strokes, and paralyses, as well as psychiatric conditions, increasingly fell under the social control of doctors.

1400 Turkey: Deaf people work in the Ottoman Court from the 15th to the 20th centuries. Sign Chronology language becomes a recognized means of communication among both hearing and deaf courtiers. 1593 England: The origins of disability as a social and political category emerge with the first state disability benefits being enacted by Parliament for those disabled in war. 1593 Europe and the United States: English Parliament initiates Europe’s first national system of benefits for rank-and-file disabled veterans. The first veterans’homes—France’s Hôtel des Invalides, Britain’s Chelsea Hospital, and Frederick the Great’s Invalidenhaus in Berlin—are established in 1633, 1685, and 1748, respectively. Following the American Civil War, the U.S. government responds with a system of homes, preferences in government hiring, land grants, free prosthetics, and pensions for disabled veterans (however, southern veterans were limited to usually scanty state pensions). 1601 England: The Poor Law is passed to provide family and community support for those unable to make a living for themselves. 1604 Laws on witchcraft in the colonies all evolve from a 1604 English Statute that makes “being a witch” punishable by death. During outbreaks of witch-hunting, the “different” body itself is targeted as a sign and symptom of one’s confederation with demonic forces. 1697 England: The first English workhouse for people with mental and physical disabilities is established in Bristol in 1697. 170 4 Bethlem Hospital in the United States has 130 residents housing the “furiously mad.”

C1 Chronology 1841 1834 1832 1829 1828 1817 1817 1817 1802 1800 1755 1749 1714 C2 ——— Chronology ob h einn fte“odnAe ffek,whichpersistsuntilthe1940s. The tension offreaks, to bethebeginning ofthe“Golden Age” P. T. BarnumpurchasesScudder’s American Museumin New York City. This moment isconsidered of specialtyinstitutionsthat isolatethedisabledfromcommunity. andtheagedinfirm. This setsthestagefordevelopment defectives, theinsane, thesick, children, TheEnglish PoorLaw Amendment stipulatesfive categories ofthoseunabletowork: England: Ohioestablishes thefirst state-sponsoredschoolfortheblind. attend Perkins.In1837, in Boston.Itbecomesthemodelforschoolsaround the nation.LauraBridgmanandHelenKeller Samuel Gridley Howe ischosentodirectwhatlaterbecalledthePerkinsSchoolfor Blind LouisBraillepublishesan explanation ofhisembosseddotcode. France: Braille Councilin1952. but alsomakes itpossiblefortheblindtobeteachersofblind.UNESCOcreates the World most importantadvances inblindeducation.Itnotonlyallows theblindtoreadatamuch faster rate oneofthe modifies araised-dotsystemofcode, blindfromchildhood, Frenchman LouisBraille, Connecticut. Dumb inHartford, Thomas GallaudetandLaurentClercopenthe American Asylum fortheEducationofDeafand describeswhatistobecomeknown asParkinson’s disease. aLondonphysician, James Parkinson, disabled childreninthe Western Hemisphere. Connecticut.Itisthefirst schoolfor The American SchoolfortheDeafisfoundedinHartford, isfounded. L’Hôpital desEnfants Malades, Theworld’s first pediatrichospital, France: considered tobe“mentallyretarded.” continuehiswork byestablishing classesforchildren and Alfred Binet, MariaMontessori, Séguin, includingEdouard Itard’s disciples, because theboy didnotlearntousealanguage.Nevertheless, intensively withhimforfive years.Itardconsideredhisattemptateducating Victor tobeafailure develops asystematictrainingprogramfortheboy and works aFrenchphysician, Gaspard Itard, isbroughttoParis. JeanMarc foundinsouthernFrance, a“feralchild” Victor of Aveyron, France: isused. wherethe“oralmethod” Germany, Samuel Heinicke establishesaschoolinLeipzig, whichinfluencesthemakeup ofcontemporary American SignLanguage(ASL).In1778, sign system, Connecticut.ClercimportstheFrench for theDeaf(now American SchoolfortheDeaf)inHartford, ThomasGallaudetandLaurentClercestablishthe Asylum social attitudestoward thedeaf.In1817, serves asaninspiration fortheestablishmentofotherEuropeanschoolsandhasadramaticimpacton whereheteachessignlanguage. The school supported schoolforthetrainingofyoungdeafchildren, The Abbé Charles-Micheldel’Épéeestablishesthefirst state- andGermany: theUnitedStates, France, overtakes Moon’s system. themselves, which canbeproducedbyblindindividuals for theBraillesystem, but becauseitiscostlytoprint, read inafew days.Itisthefirst readingsystemfortheblindtobewidelyadoptedacrossworld, develops anembossedscriptbasedonRomancapitalsthatblindadultscanlearnto Englishman, an William Moon, which isusedtodaybyblindpersonstoreadandcommunicate.In1847, Barbier, LouisBraillemodifies araised enable theblindtoread.In1828, Valentin Haüyopensthefirst schoolfortheblindinParis. Heperfectsasystemofraised education inhis DenisDiderotpensoneofthemostinfluentialtreatisesonblindand France andEngland: confinement ofmentallydisturbedindividuals. ItisadjacenttoQuebecGeneralHospital. TheBishopofQuebecopensthefirst building inCanadaexclusively forthe Canada: Letter ontheBlind in whichheargues thattheblindcanbeeducated.In1784, dot system invented byCharles letters to Chronology———C3

between freaks and disability rights comes to a head in 1984, when disability rights activist Barbara Baskin successfully lobbies the New York State Fair to remove Sutton’s Incredible Wonders of the World Sideshow, featuring a limbless man who performs as the “Frog Boy,” from the midway.

1843 Due to the influence of Dorothea Dix, an American social reformer, the Massachusetts legislature allocates funds to greatly expand the State Mental Hospital at Worcester. Dix also plays an instrumental role in the creation of 32 mental hospitals and becomes nationally known for her reform efforts. By the late 1840s, Dix focuses on developing a national plan that addresses the treatment of people with mental illness. 1846 William Thomas Green Morton discovers anesthesia and in 1867 Joseph Lister provides a model for antisepsis. These new technologies play a central role in the future of aesthetic surgery as well as surgical intervention for every type of disability that calls for it. Penicillin is discovered in 1929, cutting mortality rates in hospitals dramatically.

1848 The North Carolina School for the Deaf begins the first publication for Deaf persons with its school newspaper, The Deaf Mute. First published in 1907, the Matilda Ziegler Magazine for the Blind is an ongoing Braille publication.

1848 Samuel Gridley Howe founds the first residential institution for people with mental retardation at the Perkins Institution in Boston.

1851 In the United States there are 77 residential institutions for children, 1,151 by 1910, and 1,613 by 1933. By the 1950s and 1960s, family members and politicians throughout Western Europe, Canada, and the United States push for the deinstitutionalization of people with disabilities.

1851 The first International Sanitary Conference is held in Paris, France, with 12 countries participating. It leads to the World Health Organization, the WHO, which formally comes into existence in 1948.

1857 Edward Miner Gallaudet, youngest son of Thomas Hopkins Gallaudet, establishes the Columbian Institution for the Instruction of the Deaf, Dumb, and Blind, located in Washington D.C. Its college

division, eventually known as the National Deaf-Mute College, is the world’s first institution of Chronology higher education for deaf people. Abraham Lincoln signs its charter on April 8, 1864; today it is known as Gallaudet University.

1857 English philosopher Herbert Spencer is first to use the expression “survival of the fittest.” The application of his idea in combination with Charles Darwin’s theories in his 1859 book, The Origin of the Species, is called Social Darwinism. It is widely accepted and promoted in Germany in the 1920s and leads Adolf Hitler to express prejudice against the weak, sick, and disabled.

1863 Louis Agassiz, a significant American naturalist, advocates the permanence of different races and worries about the “tenacious influences of physical disability” if races were mixed.

1864 Germany: Karl Ferdinand Klein, teacher for deaf-mutes, and Heinrich Ernst Stotzner are considered the founding fathers of the training school, which calls for schools to be created for less-capable children with the goal of improving their lot. Training schools remain in effect today, but critics maintain that there is an over-representation of socially and economically underprivileged students in this type of setting experiencing little academic success.

1868 Sweden: The Stockholm Deaf Club is the first recorded organization of people with disabilities.

1870 England and Wales: Education for children with disabilities begins when universal elementary education is first introduced around this time. From 1895 onward, schools for “defective” children spring up. In 1899, Alfred Eichholz, an inspector of special education, draws up key recommendations, which leave their mark on the historic 1994 Education Act legislation. In 1978, the Warnock report C4———Chronology

introduces the term special needs education, which soon gains acceptance worldwide. With the 1994 UNESCO Salamanca Statement and Framework for Action on Special Needs Education, a major shift in organizing educational services for children with disabilities is confirmed internationally.

1876 Isaac Newton Kerlin, Edouard Séguin, and others establish the Association of Medical Officers of American Institutions for the Idiotic and Feeble-Minded Persons. Today, it is known as the American Association on Mental Retardation. Séguin, who staunchly believes in the educability of those with significant cognitive disabilities, is styled as “apostle to the idiots,” by Pope Pius X, reflecting the attitude of the time.

1880 The United States National Association of the Deaf (NAD), the first organization of deaf or disabled people in the Western Hemisphere, is established. In 1964, the Registry of Interpreters for the Deaf (RID) is formed to establish a national body of professionals who are trained and certified to enable communication between deaf, signing persons and nondeaf, speaking persons.

1880 Helen Keller is born in Tuscumbia, Alabama. An illness at the age of 19 months leaves her totally deaf and blind. In 1887, Anne Sullivan, recently graduated from Perkins Institution for the Blind, joins the Keller household as Helen’s teacher and remains Keller’s companion for nearly 50 years. For many, Keller’s story is the quintessential overcoming narrative.

1881 The Chicago City Council enacts the first American “ugly law” forbidding “any person, who is diseased, maimed, mutilated or deformed in any way, so as to be an unsightly or disgusting object, to expose himself to public view.” 1882 The first major federal immigration law in the United States, the Immigration Act of 1882, prohibits entry to “lunatics,” “idiots,” and persons likely to become unable to take care of themselves. Most of the restrictions that apply specifically to disability are removed from U.S. law in 1990. Today, disabled immigrants are still denied an entry visa if they are deemed “likely to become a public charge.” 1887 Walter Fernald serves as superintendent of the Massachusetts School for the Feeble-Minded (now known as the Fernald Center) from 1887 to 1924. Unlike most of his colleagues, Fernald moderates some of his earlier extreme views and eventually develops one of the country’s largest “parole” systems for moving institutional residents back into smaller, community-based residences. 1887 The American Orthopaedic Association is founded. German and British counterparts are founded in 1901 and 1918, respectively. Chronology 1895 The chiropractic profession is founded. This type of care is used to relieve musculoskeletal pain, one of the most common causes of disability. 1899 Maria Montessori and a colleague open the Scuola Magistrale Ortofrenica in Rome, an educational institute for disabled children and a training institute for instructors. Her method relies on the concept of sensory-based instruction as a means for developing intellectual competence. Her methods allow the child the greatest possible independence in order to foster his or her own development (the child’s own inner “building plan”). 1904 Sir Francis Galton, half first cousin of Charles Darwin, defines the term eugenics (which he coined in 1883) in a paper he presents to the Sociological Society on May 16. He argues for planned breeding among the “best stock” of the human population, along with various methods to discourage or prevent breeding among the “worst stock.” Galton also develops the idea for intelligence tests. The term feeblemindedness is defined as broadly as possible and is widely used by eugenic social reformers to conflate myriad social problems. Further naming, classification, and labeling provides eugenicists with a troubling rationale for treating people with coercion, disrespect, and profound inhumanity. Persons within the various categories of sub-normality become particularly vulnerable Chronology———C5

to state-sanctioned segregation, institutional confinement, and enforced sterilization. Eugenics is widely practiced in Europe, the United States, and Canada, culminating in the systemic murder of more than 260,000 disabled people by the Nazis between 1939 and 1945. Today, the so-called new eugenics, known as “human genetics,” appeals to the needs of the individual. Critics (some of the first in Germany), however, criticize individualistic eugenic approaches and disclose the connections between human genetics, national socialist racial hygiene, and eugenics. 1905 Alfred Binet and Theodore Simon publish the first intelligence scale, known as the Binet-Simon Test.

1908 The publication of Clifford Beers’s A Mind That Found Itself initiates the mental health hygiene movement in the United States. Speaking out against mistreatment and neglect within the system, Beers establishes the Connecticut Committee of Mental Hygiene, which expands in 1909, becoming the National Committee for Mental Hygiene and is now known as the National Mental Health Association. In 1940 there are 419,000 patients in 181 state hospitals. In 1943, the patient-doctor ratio is 277:1, and by the mid-1950s in New York state alone, there are 93,000 inpatients. The Bazelon Center for Mental Health Law, founded in 1972 by a group of committed lawyers and professionals in mental health and mental retardation, attempt to improve mental health service provision through individual and class action suits. In 1980, a group of these lawyers form the National Association of Rights Protection and Advocacy (NARPA). One-third of its board of directors must identify themselves as current or former recipients of mental health care. The association is committed to the abolishment of all forced treatment.

1908 Pastor Ernst Jakob Christoffel establishes a home in Turkey for blind and otherwise disabled and orphaned children. This grows into Christoffel-Blindenmission (CBM), an independent aid organization of Christians of various denominations united to help disabled people in third world countries. Today, it supports more than 1,000 development projects in 108 countries. In 1999, CBM, other agencies, and the World Health Organization initiate VISION 2020: The Right to Sight, a global initiative for the elimination of avoidable blindness by the year 2020.

1909 Germany: The German Organization for the Care of Cripples is created as an umbrella organization

for the care of the physically disabled. The Prussian Cripples’ Care Law of 1920 for the first time Chronology provides a right to medical care and scholarly and occupational education for this group.

1912 Henry H. Goddard publishes The Kadikak Family, supports the beliefs of the eugenics movements, and helps create a climate of hysteria in which human rights abuse of the disabled, including institutionalization and forced sterilization, increases. In 1927, the U.S. Supreme Court, in Buck v. Bell, rules in favor of forced sterilization of people with disabilities, further fueling eugenics movements—the number of sterilizations increases.

1914 By this date, Sigmund Freud develops his most enduring influence on the study of disability, namely, the theory of psychosomatic illness in which a psychopathological flaw is given corporeal form as a symptom, thereby establishing the notion that people succumb to disease or disability because they feel guilty about past or present repressed desires. 1918 The Smith-Sears Veterans Rehabilitation Act passes, authorizing VR services for World War I veterans. In 1916, the National Defense Act marks the beginning of the U.S. government’s supportive attitude toward rehabilitation. In 1920, the Smith-Fess Act marks the beginnings of the civilian VR program. The Social Security Act of 1935 establishes state-federal VR as a permanent program that can be discontinued only by an act of Congress. 1919 Edgar “Daddy” Allen establishes what becomes known as the National Society for Crippled Children. In the spring of 1934, the organizational launches its first Easter “seals” money-making campaign. Donors place seals on envelopes containing their contributions. The seal is so well-known that it C6———Chronology

becomes part of the organization’s official name. Today, Easter Seals assists more than one million children and adults with disabilities and their families annually through a nationwide network of more than 500 service sites. During the 1920s, Franklin D. Roosevelt inspires the March of Dimes. 1920 At about this time, the Shriners open hospitals for the care of crippled children. President Herbert Hoover establishes a “Children’s Charter” in 1928 highlighting the need to attend to the needs of crippled children. 1921 Franklin D. Roosevelt contracts poliomyelitis. Despite damage to his legs (which makes him a wheel- chair user) and deep depression, through enormous rehabilitative effort, he eventually re-enters politics and becomes president of the United States. His triumph over personal disability becomes legendary. Critics, however, fault him for choosing to minimize his disability in what is called his “splendid deception.” He establishes a center for the treatment of polio patients in Warm Springs, Georgia, called the Georgia Warm Springs Foundation (1927), which hires medical specialists from Atlanta to direct orthopedics. In 1937, President Roosevelt becomes the prime mover behind the National Foundation for Infantile Paralysis Research. 1921 Mary L. McMillan (Molly) establishes the American Women’s Physical Therapeutic Association, which is known today as the American Physical Therapy Association (APTA). 1921 The American Foundation for the Blind is established. 1921 Canada: Researchers isolate the hormone insulin. In 1922, Frederick Banting, Charles Best, J. B. Collip, and J.R.R. Macleod produce and test the pancreatic extract on people with diabetes, for which they are awarded a Nobel Prize. Insulin becomes a wonderful treatment for diabetes, but not a cure. 1921 France: Three historical waves of advocacy movements can be identified beginning with the National Federation of Injured Workers (FNAT) in 1921 and other organizations that focus essentially on the protection of rights. Another factor that stimulates advocacy groups in the first wave is the wounded veterans of World Wars I and II. A second wave dates from the period after World War II. Many advocacy groups form between 1950 and 1970, such as the Union of Associations of Parents of Maladjusted Children (UNAPEI) in 1960. A third wave finds a gradual emergence of three types of associations: those that run specialized facilities (for example, Living Upright, which, in 1970, leads to the creation of the first group living facility); those interested in trade unions; and those represented by user-advocate associations. Financing comes in large part from public funds, thereby creating a government-association partnership.

Chronology 1922 The founding of Rehabilitation International sets the stage for the establishment of other international organizations of and for people with disabilities that link together throughout the world. Later international organizations include, among numerous others, the World Federation of the Deaf (1951), Inclusion International (1962), the International Association for the Scientific Study of Intellectual Disability (1964), Disabled Peoples’ International (1981), and the International Disability Alliance (1999). 1925 The American Speech-Language-Hearing Association, today the American Academy of Speech Correction, is established to provide high-quality services for professionals in speech-language pathology, audiology, and speech and hearing science, and to advocate for people with communication disabilities.

1928 Charles Nicolle is the first deaf person to be awarded a Nobel Prize. 1929 Seeing Eye establishes the first dog guide school in the United States. 1930 The Veterans Administration is created to administer benefits, promote vocational rehabilitation, and return disabled veterans to civil employment. There is a record of provision for disabled veterans in the United States since the Revolutionary War and the Civil War. After World War I, three agencies administer veteran’s benefits. Chronology———C7

1932 Herbert A. Everest, a mining engineer with a disability, and Harry C. Jennings collaborate to design and patent the cross-frame wheelchair, which becomes the standard for the wheelchair industry that exists today. Developed during World War I, the first powered wheelchair appears, but doesn’t gain popularity for another 30 years. 1935 President Franklin D. Roosevelt signs the Social Security Act of 1935 on August 14. Beginning in 1956, SSA amendments provide disability benefits. 1935 By 1935, in the United States more than 30 states pass laws allowing for the compulsory sterilization of those deemed genetically unfit in state and federal institutions. By 1970, more than 60,000 people are sterilized under these laws. 1935 As a result of being denied participation in the Works Progress Administration (WPA), six young people with disabilities hold a sit-in at the offices of New York City’s Emergency Relief Bureau, demanding jobs in non-segregated environments and explicitly rejecting charity. The League of the Physically Handicapped is born out of this activism and operates in New York from 1935 to 1938. The League identifies social problems that remain issues today. 1935 Peer support in the United States is traced to the establishment of Alcoholics Anonymous in this year. Interest in peer support increases in the 1960s and is adopted by the disabled community. Movements, such as the Center for Independent Living, and groups, such as the National Spinal Cord Injury Association, make peer support one of their major activities. 1936 The American Academy of Physical Medicine & Rehabilitation is founded, leading to the approval of the American Board of Physical Medicine & Rehabilitation by the American Medical Association in 1947.

1937 The Fair Housing Act of 1937 passes with a mandate to assist the poor, a group that includes people with disabilities, by creating public housing. However, it is not until the Rehabilitation Act of 1973 that housing law specifically deals with discrimination faced by individuals with disabilities in housing programs that receive federal funding. The 1988 amendment to the Fair Housing Act of 1968 extends protection for people with disabilities beyond those of Section 504 of the Rehabilitation Act to include private housing. Chronology

1939 The Nazi regime institutes the Aktion T4 program in Germany. Children and, later, adults with disabilities are selectively killed both in hospitals and in special centers. The program was officially terminated by Adolf Hitler in August 1941, but practitioners “informally” continued it through a phase historians have called “wild euthanasia.”

1940 State activists for the blind, including Jacobus Broek, come together in Wilkes-Barre, Pennsylvania, to charter the National Federation of the Blind (NFB). In 1957, the NFB publishes the first edition of the Braille Monitor, which is still in print today. In 1960, dissatisfied NFB members form the American Council of the Blind (ACB). 1940 Paul Strachan establishes the American Federation of the Physically Handicapped, the nation’s first cross-disability, national political organization. 1942 The American Psychiatric Association develops a position statement in favor of the euthanasia of children classified as idiots and imbeciles. 1943 The LaFollette-Barden Act, also known as the Vocational Rehabilitation Amendments, adds physical rehabilitation to federally funded vocational rehabilitation programs. 1943 The United Nations is established on October 24 by 51 countries. The global Programme on the Disability is the lead program concerning disability. Many other types of programs, activities, and instruments include the 1975 Declaration on the Rights of Disabled Persons, the 1981 International Year of C8———Chronology

Disabled Persons, the 1982 World Programme of Action Concerning Disabled Persons, the 1983–1992 UN Decade of Disabled Persons, and the 1993 Standard Rules on the Equalization of Opportunities for Persons with Disabilities. In 1988, the first UN Disability Database (DISTAT) publishes statistics from 63 national studies covering 55 countries and the 2001 publication presents 111 national studies from 78 countries, indicating a growing interest worldwide for the collection of usable data. In 2005, a UN Ad Hoc Committee continues to consider a Convention on the Rights of Disabled Persons that is a legally binding human rights instrument. Today the UN membership totals 191 countries. 1943 Sweden: In possibly the first reference to the concept of normalization, the most significant driving force in the ongoing closure of state-run or state-funded institutions for people with a disability is made by the Committee for the Partially Able-Bodied, established by the Swedish Government. Through the advocacy of people such as Niels Erik Bank-Mikkelsen, normalization, with its profound positive effect on the lives of people who were once removed and segregated from society, remains relevant today. 1944 Richard Hoover invents long white canes known as Hoover canes that are used by many blind people. 1944 The word genocide first appears in a book by a Polish lawyer Raphael Lemkin titled Axis Rule in Occupied Europe in which he describes ’s practices but also seeks the adoption of legal restrictions so that genocide will not occur. In 1948, the United Nations adopts a declaration and then a convention on genocide that describe both against whom genocide might be directed and acts constituting genocide. Article 6 of the Rome Statute of the International Criminal Court (ICC), established in 2002, uses language identical to that in the UN convention to define genocide. More than 90 countries are parties to the ICC, but not the United States. 1945 President Harry Truman signs into law an annual National Employ the Handicapped Week. In 1952, it becomes the Presidents’ Committee on Employment of the Physically Handicapped, a permanent organization, which reports to the President and Congress. 1945 Canada: Lyndhurst Lodge, the first specialized rehabilitation center for spinal cord injury (SCI) in the world, and the Canadian Paraplegic Association, the first association in the world administered by individuals with SCI, are established. 1946 The first chapter of what will become the United Cerebral Palsy Association, Inc. is established in New York City. It is chartered in 1949, and along with the Association for Retarded Children, it Chronology becomes a major force in the parents’ movement of the 1950s. 1946 The National Mental Health Foundation is founded by attendants at state mental institutions who aim to expose abusive conditions. Their work is an early step toward deinstitutionalization. 1946 The National Institutes of Mental Health (NIMH) are founded in the United States. 1946 Europe: The European Union is founded on September 17 in Paris. It consistently shows its commitment to eliminating discrimination on many fronts through joint declarations, resolutions, directives, and action programs. With regard to disability, the European Union supports actions in favor of people with disabilities, principally in the form of European Social Fund interventions. Action programs aim at facilitating the exchange of information between member states and nongovernmental organizations with a view to identifying good practices, integrating people with disabilities into society, and raising awareness of related issues. The EU Council of Ministers Recommendation on the Employment of Disabled People (1986) calls on member states to “eliminate negative discrimination by reviewing laws, regulations and administrative provisions to ensure that they are not contrary to the principle of fair opportunity for disabled people.” Further Chronology———C9

steps are taken in 1996 when a communication on equality of opportunities for disabled people sets out a new European disability strategy that promotes a rights-based approach, rather than a welfare- type approach. This is strengthened in 1997 when the heads of state act to strengthen Article 13 of the European Community Charter of Fundamental Social Rights of Workers (1989), giving the European Community specific powers to take action to combat a broad spectrum of discrimination that includes disability. 1948 The National Paraplegia Foundation is established as the civilian branch of the Paralyzed Veterans of America. 1948 The World Health Organization is established. The WHO actively promotes human rights and the principle of equity in health among all people of the world, including persons with disabilities. Today it consists of 191 member states, but strives for universal membership. In 1980, the WHO publishes the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) and issues a revised version in 2001, the International Classification of Functioning, Disability, and Health (ICF). 1948 The United Nations General Assembly adopts the “Universal Declaration of Human Rights,” which promotes and affirms the fundamental rights to life, liberty, and security; to medical care and social services; and to the benefit from scientific progress and its uses. 1948 Sir Ludwig Guttmann organizes the first Stoke Mandeville (England) Games for the Paralysed, thus launching the Paralympic movement. The Games become international in 1952. In 1960, the first Paralympic Summer games are held in Rome and the first Paralympic Winter Games follow in 1976. The Paralympic Games are multi-disability, multi-sport competitions and have become the second- largest sporting event in the world, only after the Olympic Games.

1948 World War II bomber pilot and war hero Leonard Cheshire establishes what is to become the largest charitable supplier of services for disabled people in the United Kingdom. In the 1960s, the resistance of disabled people who live in one Leonard Cheshire home, Le Court, plays a major role in establishing the British disabled people’s movement. In the late 1990s, the Leonard Cheshire organization establishes the Disabled People’s Forum, which is run by disabled people and supports disabled people’s involve- ment and empowerment. Chronology

1949 Timothy Nugent founds the National Wheelchair Basketball Association, and the first Annual Wheelchair Basketball Tournament takes place.

1949 Europe: The Council of Europe, an intergovernmental organization, is founded. Its activities cover all major issues facing European society other than defense. Human dignity, equal opportunities, independent living, and active participation in the life of the community form the heart of the Council of Europe’s activities in relation to people with disabilities. The European Social Charter of 1961 and its revision in 1996 include specific wording and expand the rights of individuals with disabilities.

1950 The Social Security Amendments of 1950 provide federal-state aid to the permanently and totally disabled (APTD), which serves as a limited prototype for future Social Security assistance programs for disabled people.

1950 The National Mental Health Association is formed with the mission to continue 1908-advocate Clifford W. Beers’s goals of “spreading tolerance and awareness, improving mental health services, preventing mental illness, and promoting mental health.”

1950 The National Association for Retarded Children (NARC) is established by families in Minneapolis. It is the first and most powerful parent-driven human-services lobby in the nation to emerge in the 1950s. C10———Chronology

1950 Amniocentesis is developed by a Uruguayan obstetrician. Later, advanced prenatal testing provides a battery of powerful medical tools to predict risk of disability and provide information to parents about their pregnancies. 1951 With the founding of the World Federation of the Deaf, the deaf community becomes international. 1953 Francis Crick and James Watson propose a three-dimensional structure for the DNA molecule. The paper they publish also gives clues to genetic mechanisms. Today, more than 6,000 monogenic disorders have been identified, and these affect approximately 1 in 200 live births. 1955 The polio vaccine, developed by Dr. Jonas Salk, becomes available, thus ending polio epidemics in the Western world. A new oral vaccine, developed by Dr. Albert B. Sabin, is approved for use in 1961. 1956 Social Security Disability Insurance (SSDI) becomes available through amendments to the Social Security Act of 1935 (SSA) for those aged 50–64. Other important amendments to SSA include the following: 1958: provides for dependents of disabled workers; 1960: removes age limit; 1965: Medicare and Medicaid provide benefits within the framework of the SSA (until 1977); 1967: provides benefits to widows and widowers over the age of 50; 1972: Supplemental Security Income (SSI) establishes a needs-based program for the aged, blind, and disabled; 1984: the Social Security Disability Reform Act responds to the complaints of hundreds of thousands of people whose disability benefits have been terminated; 1996: President Clinton signs the Personal Responsibility and Work Opportunity Reconciliation Act, making it more difficult for children to qualify as disabled for SSI purposes. 1959 The UN Declaration of the Rights of the Child is adopted; the UN Convention on the Rights of the Child is adopted in 1989. A central principle of both documents is access to education for all children including those with disabilities. In 1993, a related UN document, the Standard Rules for the Equalization of Opportunity, extends this to preschool children, and in 1994, UNESCO’s Salamanca Statement and Framework for Action specifies the provision of special education for children with disabilities or learning difficulties. These documents constitute a universal bill of rights that can serve as a framework in the development of national policies worldwide. 1961 The American Council of the Blind is established. 1961 Europe: The European Social Charter (ESC) protects “the right of physically and mentally disabled persons to vocational training, rehabilitation and social resettlement.” In 1996, it is revised, updated,

Chronology and expanded to take account of social changes. 1961 Michel Foucault’s work The History of Madness in the Classical Age becomes obligatory reading for those concerned with the archaeology of madness and its treatments. It continues to be an academic rite de passage. 1962 Battered child syndrome is defined. Researchers estimate that the incidence of maltreatment of children with disabilities is between 1.7 and 3.4 times greater than of children without disabilities. 1962 Russia: The Moscow Theater of Mime and Gesture is the first professional deaf theater in the world. It has been in continuous operation for more than 40 years and has staged more than 100 classic and modern plays. 1963 Congress enacts new legislation to ensure funding for a comprehensive program of research on mental retardation through the National Institute on Child Health & Human Development. In 1965, the Office of Economic Opportunity launches the Elementary and Secondary Education Act (ESEA), commonly known as Project Head Start. The goal is to prevent developmental disability by providing increased opportunities for disadvantaged children in the preschool years. Chronology C11 ——— people with with Chronology go back to a meeting of parents of children with intellectual ® disabilities whose motto is “we speak for them.” However, the people with disabilities in attendance spread group. Similar groups quickly self-advocacy and start their own wish to speak for themselves The name People First is chosen at a conference held in Salem,to England and Canada. Oregon, in run by and for people with organization 1974. People First is an international self-advocacy and human rights issues. on civil intellectual disabilities to work The Developmentally Disabled Assistance and Bill of Rights Act (DD ACT) is authorized, is ACT) Act (DD and Bill of Rights Assistance Disabled The Developmentally with its disabilities such as intellec- with developmental in 1996. It focuses on individuals last reauthorization tual disability, autism, cerebral palsy, epilepsy, and hearing and visual impairments, among others. for future disability rights legislation. Act is passed. It becomes the model Rights The Civil France: century,the twentieth-first of beginning is established. By the L’Arche it includes more than Ark”in 30 countries. “The 113 communities community living, style of is a distinctive based on “core members” and “assistants,” as sharing life their commitment view who disabilities, rather than as caregivers. 65) (over national health insurance for both elderly enacted Medicare and Medicaid provide Newly and disabled persons. federal funds for the provide They Amendments of 1965 are passed. Rehabilitation Vocational The Architectural Barriers and create the National Commission on construction of rehabilitation centers to Rehabilitation of the Handicapped. America is founded. Autism Society of The professional deaf first (NTD). It is the world’s Theatre of the Deaf Deaf actors establish the National in the United States. touring theater company and the oldest continually producing theater company Today, after almost 40 years,Theatre The National 6,000 performances. over the NTD chronicles These groups Project in 1982. Voices in 1977 and the Other for the Handicapped begins Workshop at the heart of their creative to place the disability experience are among the earliest groups formally endeavors. in developed is preceded by open-heart surgery This technology Heart transplantation is introduced. The Framingham Heart Study in the1960s. internal pacemakers the 1950s and coronary bypass and contributors help identify major risk factors decades that the next in 1948. It collects data over begins to heart disease. United States in 1973 Smith in the Jones and David Lemoine in France in 1967 and Kenneth Paul independently describe the condition fetal alcohol syndrome (FAS), which comprises a recognizable during pregnancy. of maternal alcohol abuse effects to the adverse pattern of birth defects attributable England: a attempt to develop Hospice in South London opens. It is the first St. Christopher’s care. modern approach to hospice and palliative designed, requires access to facilities ABA The Act. Architectural Barriers built, Congress enacts the altered, or leased with federal funds. rights of people with Act of 1968 guarantees civil Rights to the Civil Amendments Housing The Fair to housing laws of the fair coverage The amendments extend disabilities in the residential setting. multi- standards for all new people with disabilities and establish accessible design and construction on or after March 13, occupancy for first housing built family 1991. Sweden: of People First The origins 1963 1964 1964 1965 1965 1965 1967 1967 1967 1967 1968 1968 1968 C12———Chronology

1970 Landmark legal cases such as Diana v. State Board of Education (1970; Latino students) and Larry P. v. Riles (1971–1979; minority students) challenge biases inherent in standardized testing procedures used to identify students as eligible for special education. Both cases call into question the widespread use of “scientifically” objective measures to gauge intellectual ability. Today, despite reforms, a disproportionate number of students from racial, ethnic, and linguistic minorities continue to be placed in special education classes.

1970 Japan: The Disabled Persons’ Fundamental Law (DPFL) becomes one of the 27 fundamental laws that stipulate basic principles in each policy area. Major revision takes place in 1993 reflecting a progress of guiding principles in disability policy that are deeply influenced by international movements such as the International Year of Disabled Persons (1981) and the UN Decade of Disabled Persons (1983–1992). Disability Studies as well as modern disability movements are born this same year, when members of Aoi Shiba, a group of people with cerebral palsy, protest publicly for the first time against sympathetic views toward the killing of disabled children by their parents. Aoi Shiba and other disability movements join in the establishment of Disabled Peoples’ Inter- national in 1981. In 1986, the Rehabilitation Engineering Society of Japan (RESJA) is established. In 1992, disability movements in Japan initiate the Asian and Pacific Decade of Disabled Persons 1993 to 2002. The Japan Society for Disability Studies is established in 2003 and a unified national organization, Japan Disability Forum (JDF), is established in 2004. 1970 United Kingdom: The Chronically Sick and Disabled Persons Act (CSDPA) strengthens the provisions in the 1948 National Assistance Act (NAA). Later, the Disability Discrimination Acts of 1995 and 2005, together with the Disability Rights Commission Act of 1999, constitute the primary source of antidiscrimination legislation for disabled people. 1971 A U.S. District Court decision in Wyatt v. Stickney is the first important victory in the fight for deinstitutionalization.

1971 WGBH Public Television establishes the Caption Center, which provides captioned programming for deaf viewers.

1971 Gerontologist M. Powell Lawton defines functional assessment as any systematic attempt to objectively measure the level at which a person is functioning in a variety of domains. Over 30 years later, functional assessment, in combination with outcomes analysis, is considered one of the “basic sciences” of rehabilitation. In 1980, the World Health Organization proposes a series of definitions, Chronology which have a profound impact on the assessment of functional status and outcomes in rehabilitation. It is modified and revised in 1993 and 2001.

1971 The Declaration on the Rights of Mentally Retarded Persons (UN 1971), the Declaration on the Rights of Disabled Persons (UN 1975), and the World Programme of Action Concerning Disabled Persons (UN 1982) indicate the emergence of a global discourse of rights for disability.

1972 A group of people with disabilities (including Ed Roberts, John Hessler, and Hale Zukas), known as the Rolling Quads, living together in Berkeley, California, formally incorporate as the Center for Independent Living (CIL). This first CIL in the country becomes the model for Title VII of the Rehabilitation Act of 1973. In the late 1980s and early 1990s the group’s advocacy efforts help pass the Americans with Disabilities Act (ADA). CILs are always controlled by disabled people. Accepted by most people as the birth of the modern independent living movement, the Berkeley concept migrates to other countries. In 1999, a global summit on independent living is held in Washington D.C. The summit brings together more than 70 countries. The Washington Declaration that comes out of the conference establishes a set of basic principles. In 1996, the Ed Roberts Campus, an international center and a service facility, is created in Berkeley, California, in memory of Edward V. Roberts, founder of the independent living concept. Chronology———C13

1972 A young television reporter for the ABC network, Geraldo Rivera, is given a key to one of the wards at Willowbrook State School on Staten Island, New York. Established in the late 1930s as a state-of-the-art facility for the “mentally deficient,” by 1972, Willowbrook becomes a warehouse for the “socially undesirable” of New York City, with a substantial minority having no disability at all. The inhumane conditions deteriorate to the extent that a visitor remarks, “In Denmark we don’t let our cattle live this way.” Rivera’s exposé leads to a lawsuit that results in the Willowbrook Consent Decree of 1975, which creates a detailed system of monitoring and oversight of all residents living there at that time, to be met until the last of the “class clients,” as they are sometimes referred to, pass on. The property has since been sold to a college. 1972 Paul Hunt’s call for a consumer group to promote the views of actual and potential residents of institutional homes for the disabled in the United Kingdom results in the establishment of the Union of the Physically Impaired against Segregation (UPIAS). The group’s aim is to formulate and publicize plans for alternative forms of support in the community. Hunt is regarded by many disability activists as the founder of the modern disabled people’s movement. 1972 New Zealand: Three key pieces of legislation pass have long-term effects on the disabled community: the 1972 no-fault Accident Compensation Act that provides monetary compensation to victims based on level of impairment suffered; the 1975 Disabled Persons Community Welfare Act, giving assistance to disabled people, parents, and guardians, as well as voluntary associations; and the Human Rights Act of 1977, which does not include disability as a recognized grounds for discrimination. Today, disabled populations in New Zealand continue to fight to establish an identity as disabled people rather than a group needing “welfare.” One task is to promote legislation that includes disability as a group against whom discrimination is outlawed. 1973 The Rehabilitation Act of 1973 lays the foundation for the disability rights movement. Its Section 504 asserts that people with disabilities have equal rights that prevent discrimination based on their disability in programs or activities that receive federal funding. This is the first major nationwide antidiscriminatory legislation designed to protect disabled Americans. These rights are further protected with the landmark Americans with Disabilities Act (ADA) of 1990. Section 501 of the Act requires affirmative action and nondiscrimination in employment by federal Chronology agencies of the executive branch. Section 502 creates the Access Board, which grows out of the 1965 National Commission on Architectural Barriers to Rehabilitation of the Handicapped. As a result of the commission’s June 1968 report, Congress enacts the Architectural Barriers Act (ABA). Section 503 requires that to receive certain government contracts, entities must demonstrate that they are taking affirmative action to employ people with disabilities. The enduring hallmark of the act, Section 504, provides that no otherwise qualified individual with a disability shall, solely by reason of his or her disability, be excluded from the participation in, denied the benefits of, or subjected to discrimination under any program or activity receiving federal funds. However, it would take five years of lobbying and protesting before the American Coalition of Citizens with Disabilities (ACCD) wins the release of regulations that allow Section 504 to be implemented. The Act is in many ways the direct predecessor to the ADA. However, the primary focus is vocational training and rehabilitation, and over the next half-century, disability law and advocacy move from the medical (medical issues) and vocational (often a justification for welfare and benefits) models to a civil rights model, which seeks to remove the barriers that impede the full integration of people with disabilities into society. 1973 The term mainstreaming emerges within the educational jargon associated with the Education for All Handicapped Children Act (EHA), the early U.S. legislation subsequently reauthorized as the Individuals with Disabilities Act (IDEA) in 1990. 1973 Ronald Mace is the driving force behind the creation of the first accessible state building code in the United States (North Carolina, 1974) and in the drafting of national accessibility codes and C14———Chronology

standards. He coins the term universal design to capture and promote his expanded philosophy of “design for all ages and abilities”—curb cuts being his favorite example.

1973 Washington D.C. introduces the first handicap parking stickers. The Federal-Aid Highway Act funds curb cuts.

1974 First Lady Betty Ford and investigative reporter Rose Kushner are diagnosed with breast cancer. They help break the public silence on this topic. In 1954, Terese Lasser begins Reach to Recovery, a program of volunteers who have previously undergone radical mastectomies who provide emotional support to hospitalized women who have just had the operation. Today, one in eight women is diagnosed with breast cancer during her lifetime. 1975 The Education for All Handicapped Children Act, the first separate federal legislation authorizing special education for children and youth, passes, due, in part, to the advocacy efforts of a group of parents. In 1990, it becomes known as the Individuals with Disabilities Education Act, or IDEA. 1975 The Developmentally Disabled Assistance and Bill of Rights Act, providing federal funds for programs that provide services for people with developmental disabilities, passes. 1975 The Association of Persons with Severe Handicaps (TASH) is founded. It calls for the end of aversive behavior modification and deinstitutionalization of people with disabilities. 1975 The UN General Assembly adopts the Declaration on the Rights of Disabled Persons, which states that all persons with disabilities have the same rights as other people. This document is not legally binding and can be attributed in part to a UN Ad Hoc Committee set up in 2001 to consider a Convention on the Rights of Disabled Persons that is legally binding. 1975 United Kindom: The Union of the Physically Impaired against Segregation (UPIAS) publishes a paper that redefines the term disability, which becomes known as the social model of disability as it radically transforms the way disabled people see themselves and their place in society. 1976 The Higher Education Act of 1965, which establishes grants for student support services aimed at fostering an institutional climate supportive of low-income and first-generation college students, is amended to include individuals with disabilities. In March 1978, the Association on Handicapped Student Service Programs in Post-Secondary Education is founded. It later becomes the Association on Higher Education and Disability (AHEAD).

Chronology 1976 Sponsored by Ralph Nader’s Center for the Study of Responsive Law, the Disability Rights Center is founded in Washington D.C. 1977 Protesting the federal government’s delayed enactment of the rules and regulations for the implementation of the Rehabilitation Act of 1973, disabled activists on April 1 organize protests at the federal offices of the Department of Health and Human Services in various cities across the United States. In San Francisco, protesters hold the regional offices hostage for 28 days, gaining national attention and resulting in an agreement with federal officials for the rapid establishment of the rules and regulations to implement Section 504 of the Act. 1977 Max Cleland is appointed to head the U.S. Veterans Administration. He is the first severely disabled person to hold this post. 1977 S. Z. Nagi defines disability as an individual’s performance of tasks and activities related to achievement of social roles—a distinct concept, different from impairment. It is further formalized with the introduction of the World Health Organization’s International Classification of Impairments, Disabilities, and Handicaps in 1980 and further refined in 2001 in its International Chronology———C15

Classification of Functioning, Disability, and Health. Nagi’s model is used as the basis for the Americans with Disabilities Act, for almost all disability social policy in the United States, and for statistics at the United Nations and in Europe.

1978 The Child Abuse Prevention and Treatment and Adoption Reform Act of 1978 and the Adoption Assistance and Child Welfare Act of 1980 promote the adoption of children with special needs, including disabilities.

1978 The Atlantis Community, the second independent living center in the country after Berkeley, is established in Denver, Colorado, in 1975. On July 5–6, 1978, twenty disabled activists from the Atlantis Community block buses with their wheelchairs and bodies and bring traffic to a standstill at a busy downtown intersection. This act of civil disobedience results in the American Disabled for Accessible Public Transit, the original name for the American Disabled for Attendant Programs Today, or ADAPT.

1978 Legislation creates the National Institute on Handicapped Research. In 1986, it is renamed the U.S. National Institute on Disability and Rehabilitation Research (NIDRR). Its mission is to contribute to the independence of persons of all ages who have disabilities. It is located in the Department of Education under the Office of Special Education and Rehabilitation Services.

1978 The World Health Organization starts to promote the concept of community-based rehabilitation (CBR) as a means of helping people with disabilities in the developing world. It emerges, in part, from the WHO primary health care campaign Health for All by the Year 2000. Around the same time, in Western countries, home-visiting programs in which a trained worker regularly visits the family to advise on ways of promoting child development become one of the success stories of modern disability services. Among the best-known programs are those based on a model originating in Portage, Wisconsin, and now used in many countries.

1978 England: The Warnock report introduces the term special needs education. It marks a major shift in organizing educational services for children with disabilities and results in the new conceptualization

of special needs education. This change is confirmed internationally by the Salamanca Statement Chronology and Framework for Action on Special Needs Education at the UNESCO’s Conference held in Salamanca in 1994. This theoretical shift is marked with the change of the term integration to inclusion or inclusive education.

1978 USSR: The Action Group to Defend the Rights of the Disabled is established to advocate for legal rights for Soviets with disabilities.

1979 The Disability Rights Education and Defense Fund (DREDF) establishes itself as a leading cross- disability civil rights law and policy center. It is founded by people with disabilities and parents of children with disabilities. Because its philosophy is closely aligned with other civil rights struggles, in 1981, DREDF is invited to join the executive committee of the national’s largest coalition of civil rights groups, the Leadership Conference on Civil Rights. In 1987, DREDF establishes the Disability Rights Clinical Legal Education Program and begins teaching disability rights law at the University of California’s Boalt Hall School of Law.

1979 The National Alliance for the Mentally Ill (NAMI) is founded. NAMI is an advocacy and education organization.

1979 Germany: The first Cripples’ Group is founded as a cross-disability group with emancipatory aims. In an attempt to reinterpret disability in positive terms, the cofounders choose the term Krüppel over handicapped or disabled. C16———Chronology

1979 Nicaragua: The Organization of the Revolutionary Disabled is set up in the wake of the Sandinista victory.

1980 The California Governor’s Committee on Employment of People with Disabilities and entertainment and media industry professionals establish the Media Access Office (MAO).

1980 About the time Congress is considering passage of the ADA (1990), marketers begin to acknowledge the economic potential of the disabled community; consequently, the appearance of disabled characters in consumer goods advertising mushroom and ability-integrated advertising becomes much more commonplace. Organizations such as MAO and NOD (National Organization on Disability) provide advertising strategies and guidance.

1980 The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), an interdisciplinary association composed of individuals interested in technology and disability, is founded.

1980 The World Health Organization’s International Classification of Impairments, Disabilities, and Handicaps (ICIDH), a groundbreaking, but controversial, classification system is tentatively released for trial purposes with the goal of uniform information collection worldwide. It has a negligible impact on disability statistics or data collection; however, researchers argue that it is a vast improvement over available tools. It is renamed and vastly revised in 2001.

1980 England: Graeae Theatre Group, composed of disabled actors, directors, and other theater professionals, is founded in London by Nabil Shaban and Richard Tomlinson. It takes its name from the the Graeae of Greek mythology, three gray-haired sisters who shared one eye and one tooth. Graeae’s first production is Sideshow.

1980 Netherlands: The Liliane Foundation starts by assisting 14 children. In 2002, it helps 31,982 children spread over 80 countries. The Foundation’s efforts are directed primarily toward children with disabilities living at home. Its aim is to have direct contact with the child within the home situation and to assist the personal growth and happiness of the child, thus providing “tailor-made” assistance.

1980 Taiwan: The Physically and Mentally Disabled Citizens Protection Law is promulgated. It guarantees legal rights for the disabled and creates a significant improvement in their welfare.

Chronology Although most of the disabled people in Taiwan still struggle to earn their due respect, today, public awareness of this group is emerging gradually and significantly.

1980 United Kingdom and Europe: The Black Report (Report of the Working Group on Inequalities in Health) is published. Among other groups it targets disabled people for better conditions that lead to better health. The report does not find favor with the Conservative government, but begins to be implemented under the Labour government in 1997. With its central theme of equity, the report plays a central role in the shaping of the World Health Organization’s Common Health Strategy of the European Region.

1981 The Reagan Administration begins to amend and revoke disability benefits, a policy that continues throughout his administration and leads several disabled people who are in despair over the loss of their benefits to commit suicide.

1981 Justin Dart, recognized as the founder of the Americans with Disabilities Act (ADA, 1990), is appointed to be vice-chair of the National Council on Disability. The council drafts a national policy on equal rights for disabled people; the document becomes the foundation of the ADA. Chronology———C17

1981 The Committee on Personal Computers and the Handicapped is established in Illinois, an indicator of the disabled community’s interest in information technology (IT) accessibility, but in order to stimulate the development of suitable products, activists lobby for legislative protections, which are included in the Americans with Disabilities Act of 1990. In 2000, a suit brought by the National Federation of the Blind against AOL is suspended when AOL agrees to make its software accessible by April 2001. The World Wide Web Accessibility Initiative (WAI) launches in 1997. It raises the level of awareness of disability accessibility issues within the Internet community, especially among those who design and implement web pages. 1981 The first reported cases of AIDS in the United States appear in June. Today, the World Health Organization estimates that worldwide, approximately 40 million people are living with HIV/AIDS; 22 million men, women, and children have died; and 14,000 new infections are contracted every day. Around the world, in the year 2003, the AIDS epidemic claims an estimated 3 million lives, and almost 5 million people acquire HIV, 700,000 of them children. Currently, 6 million people infected with HIV in the developing world are estimated to need access to antiretroviral therapy to survive, but only 400,000 have this access. 1981 Disabled Peoples’ International (DPI) is officially founded at a meeting in Singapore. The establishment of such international organizations around this time represents the disability movement becoming a global social movement instead of a national one. DPI is directed by persons with disabilities working in human rights advocacy. It sponsors World Assemblies, which are held every four years to develop a multiyear action plan. The most recent one is held in 2002 in Sapporo, Japan, where delegates from more than 100 countries come together. A leading slogan for DPI and other disability groups, coined in the early 1990s, is “nothing about us without us.” 1981 The International Year of Disabled Persons encourages governments to sponsor programs that assimilate people with disabilities into mainstream society. Despite the positive worldwide effects it has, the UN program also creates some angry activists with disabilities who protest against the charity approach officially adopted for the event. Consequently, the activists build their own infrastructure consisting of counseling and advocacy facilities as well as job creation programs. Chronology 1981 Australia: Australia’s modern disability policy takes shape after the 1981 International Year of Disabled Persons. Examples: The 1980s see a shift away from institutional care; the Com- monwealth Disability Service Act provides a framework for the provision of disability services; and in 1991, the federal Disability Reform Package maximizes the employment of disabled. In 1995, a legal decision represents a watershed in telecommunications policy for people with disabilities when a commission’s inquiry finds the national carrier, Telstra, guilty of discrimination against people with severe hearing or speech impairments. The success of the action results in the Telecommunications Act of 1997, which includes new provisions for the deaf community. 1981 Mexico: The Program of Rehabilitation Organized by Disabled Youth of Western Mexico begins as a rural community-based rehabilitation program. 1981 Soweto: The Self Help Association of Paraplegics begins as an economic development project. 1981 United Kingdom: Disabled people set up the British Council of Disabled Persons (BCOPD), the United Kingdom’s national organization of disabled people, to promote their full equality and participation in UK society. 1981 Zimbabwe: The National Council of Disabled Persons, initially registered as a welfare organization, becomes a national disability rights group. C18———Chronology

1982 Disability Studies originates with the formation of the Society for the Study of Chronic Illness, Impairment, and Disability. In 1986, it officially changes its name to the Society for Disability Studies (SDS). Disability Studies is a critical field of study based in human and social science. 1982 In re Infant Doe (commonly known as the Baby Doe case) launches the debate as to whether parents or medical authorities should choose to let a disabled infant die rather than provide the necessary medical treatment and nourishment essential to sustain life. In response to this and other cases, the U.S. Department of Health and Human Services creates a rule maintaining it unlawful for any federally funded hospital to withhold medical treatment from disabled infants. In 1984, the U.S. Congress enacts the Child Abuse Amendments, which calls for the medical treatment of newborns with disabilities unless the child would die even with medical intervention. The issue makes it to the U.S. Supreme Court in 1986 with the Bowen v. American Hospital Association case. The Court holds that denying treatment to disabled infants does not constitute legally protected discrimination under Section 504 of the Rehabilitation Act and that hospitals and physicians are to implement the decision of the parents. The decision results in the passage of the Child Abuse Prevention and Treatment Act Amendments of 1984. In the year 2000, a scholar argues that the Amendments, presidential commission writings, and disability advocates “have all combined to ensure that most babies who can benefit from medical interventions do receive them.” 1982 Disability Awareness in Action (DAA) and other groups such as the Disabled Peoples’ International (DPI) and International Disability Alliance (IDA) are the driving force behind the globalization of disability issues through the World Program of Action (1982), the United Nations Standard Rules of Equalization of Opportunities for People with Disabilities (1993), the World Summit for Social Development (1995), and the Education for All Framework for Action (2000), as well as the current campaign to secure a UN convention on the rights of disabled people. 1982 The National Council on Independent Living (NCIL) is formed in the United States. It provides an excellent example of leadership for people with disabilities by people with disabilities. 1982 Canada: The Charter of Rights and Freedoms section of the Constitution provides protection to persons with disabilities. 1982 France: Handicap International is founded in Lyon. It is active in various areas associated with all the causes of handicaps, both traumatological (land mines, road accidents) and infectious (polio, leprosy). In the 1990s it begins working on mental disability issues as a result of experience with

Chronology Romanian orphanages and the war in the Balkans. In 1992, Handicap International creates its first two mine clearance programs and in 1997 it is the joint winner of the Nobel Peace Prize for its leading role in the fight against landmines. 1983 Rights-based approaches to disability rapidly gain currency in many developing countries since the UN Decade of Disabled Persons, 1983–1992. UNESCAP’s Biwako Millennium Framework for Action towards an Inclusive, Barrier-Free and Rights-Based Society for People with Disabilities in Asia and the Pacific sets the priorities for the extended Decade of Disabled Persons, 2003–2012. 1983 Access and accessibility are concepts discussed throughout the World Programme of Action Concerning Disabled Persons passed by the UN General Assembly. The General Assembly in 1993 passes the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. 1983 England: The first Covent Garden Day of Disabled Artists is held in London. 1983 Thailand: DPI-Thailand is established. 1984 The Access Board issues the “Minimum Guidelines and Requirements for Accessible Design,” which today serves as the basis for enforceable design standards. The 1990 Americans with Chronology———C19

Disabilities Act (ADA) expands the board’s mandate to include developing the accessibility guidelines for facilities and transit vehicles. The Rehabilitation Act Amendments of 1998 give the Access Board additional responsibility for developing accessibility standards for electronic and information technology. In 2001, Section 508 of federal law establishes design standards for federal websites, making them accessible to individuals with disabilities. 1985 The U.S. Department of Health and Human Services issues the first comprehensive national minority health study, which shows racial disparity in health and concludes that the difference in mortality is not acceptable. In 1998, studies indicate that racial disparity has not improved as much as hoped; consequently, President Bill Clinton launches an initiative that sets a national goal of eliminating disparities in six key areas by the year 2010. Some of these areas include diseases and conditions considered to be disabling as well as life threatening. 1986 The Air Carrier Access Act (ACAA) passes. It requires the U.S. Department of Transportation to develop new regulations that ensure that disabled people are treated without discrimination in a way consistent with the safe carriage of all passengers. The relevant regulations, Air Carrier Access rules, are published in March 1990. 1986 The National Council on the Handicapped publishes its report Toward Independence. It recommends that “Congress should enact a comprehensive law requiring equal opportunity for individuals with disabilities” and suggests that the law be called “the Americans with Disabilities Act.” In its 1988 follow-up report, On the Threshold of Independence, the council takes the somewhat unusual step of publishing its own draft of the ADA bill. 1986 The Equal Opportunities for Disabled Americans Act allows recipients of federal disability benefits to retain them even after they obtain work, thus removing a disincentive that keeps disabled people unemployed. 1986 Australia: The Disability Services Act provides that a person with disability has the right to achieve his or her individual capacity for physical, social, emotional, and intellectual development. In 1992, the Disability Discrimination Act supports nondiscrimination in education and training. It also makes it unlawful to discriminate in relation to access to premises, including public transportation. Chronology 1986 Canada: The Employment Equity Act mandates the institution of positive policies and practices to ensure that persons in designated groups, including persons with disabilities, achieve at least proportionate employment opportunities. 1986 England: The first issue of the magazine Disability Arts in London (DAIL) is produced in London. 1986 Southern Africa: The Southern Africa Federation of the Disabled is formed as a federation of nongovernmental organizations of disabled persons. 1988 The Technology Act (Technology-Related Assistance for Individuals with Disabilities Act of 1988 and its 1994 amendments), and, in 1998, the Assistive Technology Act (AT) provide financial assistance to states to support programs of technology-related assistance for individuals with disabilities of all ages. The1988 act defines assistive technology (AT). The Americans with Disabilities Act of 1990 prohibits discrimination against people with disabilities in employment, public institutions, commercial facilities, transportation, and telecommunications, which includes accessibility to all entrances, bathrooms, program areas, and parking spaces as well as interpreters for the deaf and Braille and large-print materials for the blind. The Telecommunications Act of 1996 requires the telecommunication industry to make equipment that will support transmission of information in forms accessible to people with disabilities including broadband and television program captioning. By 2000, approximately 10 percent of the U.S. population uses AT devices and/or modifications to their home, work, or school that allow them to participate in major life activities. C20———Chronology

1988 Congress introduces a series of amendments to the Civil Rights Act of 1968, including a prohibition of housing discrimination against people with disabilities. These amendments are known as the Fair Housing Act Amendments of 1988. 1988 China: Deng Pufang, a wheelchair user and son of the late Chinese leader Deng Xiaoping, is the driving force behind a series of laws and programs initiated to improve life for the disabled. In 1984, he sets up the China Welfare Fund for Disabled Persons and, in 1988, the China Disabled Persons’ Federation, which endeavors to improve public images of disabled people. Today, there are 60 million disabled people in China.

1989 The European Network on Independent Living (ENIL) is set up. It focuses on personal assistance as a key component of independent living.

1990 ADAPT, the American Disabled for Attendant Programs Today, originally called the American Disabled for Accessible Public Transit, continues to gain public awareness through tactics of civil disobedience until regulations are finally issued with the passage of the Americans with Disabilities Act (ADA). The ADA passes, after ADAPT uses tactics of civil disobedience, in the tradition of other civil rights movements, in one of the largest disability rights protests to date (600 demonstrators), the “Wheels of Justice March,” during which dozens of protesters throw themselves out of their wheelchairs and begin crawling up the 83 marble steps to the Capitol to deliver a scroll of the Declaration of Independence. The following day 150 ADAPT protesters lock wheelchairs together in the Capitol rotunda and engage in a sit-in until police carry them away one by one. George H.W. Bush signs the ADA on July 26. It provides employment protections for qualifying persons with disability. It is the most prominent and comprehensive law prohibiting discrimination on the basis of disability in the United States, expanding the mandate of Section 504 of the Rehabilitation Act of 1973 to eliminate discrimination by prohibiting discrimination in employment, housing, public accommodations, education, and public services. In June 2000, the National Council on Disability issues a report, Promises to Keep: A decade of Federal Enforcement of the Americans with Disabilities Act, which includes 104 specific recommendations for improvements to the ADA enforcement effort. On December 1, 2004, the council issues a final summary report, Righting the ADA, in order to address “a series of negative court decisions [that] is returning [Americans with disabilities] to ‘second-class citizen’ status that the Americans with Disabilities Act was supposed to remedy forever.”

1990 The ADA requires public entities and businesses to provide effective communication to individuals Chronology with disabilities. Title IV of the ADA mandates that nationwide telecommunication systems be accessible to persons with speech or hearing disabilities. The Federal Communications Commission (FCC) requires relay services to be in place by July 26, 1993. The Telecommunications Act of 1996 adds provisions to the Communications Act of 1934 that requires manufactures and providers of telecommunications equipment and services to ensure accessibility to persons with disabilities. In 2000, President Bill Clinton establishes regulations governing the accessibility to people with disabilities of the electronic and information technology used within the federal government.

1990 The Individuals with Disabilities Education Act (IDEA) is enacted. It guarantees the right to free and appropriate education for children and youth with disabilities and focuses on higher expectations, mainstreaming students where possible, and an increased federal rule in ensuring equal educational opportunity for all students. IDEA requires schools to provide a free and appropriate public education to eligible children with disabilities. It also requires schools to develop an individualized education plan (IEP) for each child and placement in the least restrictive environment (LRE) for their education. IDEA is amended in 1997 and reauthorized again in 2004 as the Individuals with Disabilities Education Improvement Act. Chronology———C21

1990 Legislation establishes the National Center for Medical Rehabilitation Research (NCMRR), whose mission is to foster development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of persons with disabilities. It has primary responsibility for the U.S. Government’s medical rehabilitation research that is supported by the National Institutes of Health (NIH). 1990 The World Declaration on Education for All (EFA) is adopted in Jomtien, Thailand, by more than 1,500 persons representing the international community. Article 23 of the UN Convention on the Rights of the Child states that disabled children have the right to a “full and decent life” and that member nations provide free education and training to disabled children whenever possible in order to provide the “fullest possible social integration and individual development.” UNESCO is the lead UN organization for special needs education. 1990 Korea: The disability movement celebrates the passage of the Employment Promotion Act for People with Disabilities. The government imposes control over the disabled population in the 1960s and 1970s by forwarding institutionalization under the banner of “protection,” promoting sterilization, and violating the rights of disabled people in general. The 1981 International Year of Disabled Persons influences the government, and new laws, such as the Welfare Law for Mentally and Physically Handicapped, are enacted, and the human rights of disabled people becomes the dominant rhetoric of the disability movement. 1990 United Kingdom: The National Disability Arts Forum is launched at the UK-OK Conference at Beaumont College in Lancashire, UK. 1991 The Resolution on Personal Assistance Services is passed at the International Personal Assistance Symposium. Personal assistance services are the most critical services for individuals. Critical aspects of these services are that they must be available up to 24 hours a day, 7 days a week, to people of all ages, and with access to governmental payments. In the United States alone, personal assistance services affect the lives of more than 9.6 million citizens with disabilities. 1991 Australia: The federal Disability Reform Package is introduced; the Disability Discrimination Act,

which covers issues of discrimination in education, is enacted in 1992; and the Commonwealth Chronology Disability Strategy, designed to provide equal access to government services for people with disabilities, is first introduced in 1994 and then revised in 2000. During the 1990s similar discrimination legislation emerges in other countries, such as New Zealand’s Human Rights Act, the U.K.’s Disability Discrimination Act, Israel’s Disabled Persons Act, Canada’s Human Rights Act, and India’s Disabled Person’s Act. 1991 China: The most important laws and initiatives reside in the 1991 Law on Protection of Disabled Persons and a series of National Work Programs for Disabled Persons (1988, 1991, 1996, 2001), which integrate disability into the government’s Five-Year Plans. China participates heavily in the United Nations Decade of Disabled Persons, 1983–1992, and initiates the Asia Pacific Decade of the Disabled Persons, 1993–2002. China continues to collaborate with UN projects involving the disabled and will host the 2007 International Special Olympics in Shanghai. 1991 Serbia and Montenegro: From the 1960s to the 1980s, post–World War II Yugoslavia is lauded for being a socially advanced nonaligned nation, but the contemporary wars that decimate Yugoslavia begin in 1991, and today there are more than one million disabled citizens, refugees, and casualties due to the wars. Disabled people in Serbia and Montenegro (formally named the Federal Republic of Yugoslavia—FRY) are left with shattered pieces of the spent past with little hope for the near future. Although the FRY constitution prescribes special protection of disabled persons in accordance with legal provisions and Serbia is party to numerous UN documents and acts, a disabled expert in 2004 admits that discrimination against persons with disability in Serbia and Montenegro is a C22———Chronology

long-term problem that people without disability tend to ignore. Two of the most effective advocacy groups making in-roads today are the Association of Students with Disabilities and the Center for Independent Living in Belgrade.

1992 The UN Economic and Social Commission of Asia and the Pacific (ESCAP) proclaims a 10-year program known as the Asian and Pacific Decade of Disabled Persons 1993–2002 with goals of full participation and equality for persons with disabilities.

1993 The United Nations publishes the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, which becomes the international legal standards for disability programs, laws, and policies. Although not legally enforceable this instrument sets an inclusive and antidiscriminatory standard that is used when national policies are developed. It marks a clear shift from the rehabilitation and prevention paradigm to the human rights perspective on disability.

1993 Slovak Republic: The Czech and Slovak Republics separate into two independent countries. They both join the European Union in 2004. In Slovakia, a large number of highly innovative and resourceful grassroots nongovernmental organizations emerge to address the human rights, quality-of-life, and independent living priorities of citizens with disabilities. They pursue this mission, however, with extremely limited resources and with varying degrees of support from a multiparty parliament. 1993 Sweden: The Independent Living Institute (ILI) is founded. 1994 Two networks, one for elderly persons and the other for persons with disabilities, join together to form the U.S. National Coalition on Aging and Disability. In following years, policy makers and advocates begin to see the benefits of merging some services. 1994 Germany: The disability rights movement is successful in using for its own aims the reform of the German constitution, which is made necessary by the reunification process. An amendment to the constitution forbids discrimination on the grounds of disability. Other such laws as the Rehabilitation of Participation Law (2001) and the Federal Equal Rights Law (2002) are formulated with the active contribution of disability rights activists, and in 2003, the official German program of the European Year of People with Disabilities is organized by a prominent activist. 1994 Sweden: The Swedish Disability Act (LSS) comes into force. It expands the 1985 Special Services Act. The LSS is also more ambitious than its predecessor, calling for “good living conditions” rather than just an “acceptable standard of living.” Chronology 1995 The National Council on Disability, a federal agency, makes recommendations to the president and Congress on disability issues. Among other issues, it calls for the end to the use of aversives (techniques of behavior control such as restraints, isolation, and electric shocks) because they are abusive, dehumanizing, and psychologically and physically dangerous. Other organizations follow, such as the Autism National Committee in 1999, TASH in 2004, and the International Association for the Right to Effective Treatment in 2003. 1995 The Commission for Case Management Certification (CCMC) incorporates. Case management is a process of care planning and coordination of the services and resources used by people with disabilities and their families. 1995 Europe: The Association for the Advancement of Assistive Technology in Europe (AAATE) is founded as an interdisciplinary association devoted to increasing awareness, promoting research and development, and facilitating the exchange of information. AAATE is composed of more than 250 members from 19 countries. It interacts with sister organizations in North America, Japan, and Australia to advance assistive technology worldwide. The Tokushima Agreement, signed in 2000 by AAATE, the Rehabilitation Engineering and Assistive Technology Society of North America Chronology———C23

(RESNA), the Rehabilitation Engineering Society of Japan (RESJA), and the Australian Rehabilita- tion and Assistive Technology Association (ARATA), promotes exchange of information and collaboration. 1995 United Kingdom: The campaign for antidiscrimination legislation begins in earnest with the emergence of the disability movement in the late 1970s. The Disability Discrimination Act of 1995 (DDA) together with the Disability Rights Commission Act of 1999 constitute the primary source of antidiscrimination legislation for disabled people in the United Kingdom. The Disability Discrimination Act 2005 extends the protection. 1996 There are 1.4 million fewer disabled older persons in the United States than would have been expected if the health status of older people had not improved since the early 1980s. 1996 Advocates for mental health parity such as the National Alliance for the Mentally Ill (NAMI; 1979) believe that mental illnesses are real illnesses and that health insurance and health plan coverage for treatment should be equal with coverage of treatment for all other illnesses. Due in part to advocacy, the Mental Health Parity Act becomes law in 1996. In 1999, mental illness ranks first in causing disabilities among many industrialized nations, including the United States, which experiences a loss of productivity in this year of $63 billion. In the United States, 5 to 7 percent of adults suffer from serious mental disorders and 5 to 9 percent of children suffer from serious emotional disturbances that severely disrupt their social, academic, and emotional functioning.

1996 Costa Rica: Approval of a law called Equal Opportunities for People with Disabilities is a turning point for the population with disabilities, which is among the most excluded sectors of society. The law is inspired in part by the United Nations Standard Rules on the Equalization of Opportunities for Disabled People (1993). Disability experience in Costa Rica is definitely transformed as a result of the mandates of this generic law, as people with disabilities and their families start to use this legal instrument as a strategy to empower themselves.

1996 Europe: Created in 1996, the European Disability Forum (EDF) is today the largest independent, trans-European organization that exists to represent disabled people in dialogue with the European Union (EU) and other European authorities. Its mission is to promote equal opportunities for Chronology disabled people and to ensure disabled citizens full access to fundamental and human rights through its active involvement in policy development and implementation in the EU. The EDF has national councils in 17 European countries and has 127 member organizations. The European Year of People with Disabilities 2003 is one of the EDF’s most important campaigns.

1996 India: The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, becomes law. It is the first legislation for equal opportunities for disabled people. Prior to this, disabled persons receive services but not legal protection. Improvements in conditions begin in 1981 with the International Year of Disabled Persons. India is a signatory to the UN resolution of 1976 establishing it and is thereby committed to improving the lot of the disabled. The Lunacy Act of 1912 is repealed and the National Mental Health Act is passed in 1987. Nonetheless, with approximately 70 million disabled people residing in India (in a population of over a billion), the government does not include the domain of disability in the 2001 census, which reflects the attitudinal barriers in acknowledging the disabled identity.

1997 Government expenditures on behalf of persons with disabilities may total as much as $217.3 billion (taking into account the costs that would be expected among persons with disabilities in the absence of the disability), the equivalent of 2.6 percent of the gross domestic product in the United States for 1997.

1997 The landmark 1997 UNESCO Universal Declaration on the Human Genome and Human Rights frames the actual application of the new scientific developments raised by genetics. As a policy C24———Chronology

statement, it provides the first signs that genetics will be applied in ways that maintain human rights. In 2003, the Council of Europe and the council’s Steering Committee in Bioethics issue policy statements in a working document titled Application of Genetics for Health Purposes. In the case of gene therapy, in 1994, the Group of Advisors on the Ethical Implications of Biotechnology of the European Commission voices concern regarding equity, maintaining that all genetic services that are available for the entire population should be equally available for persons of disability. Today, UNESCO’s Human Genome Organization’s Ethics Committee, the World Health Organization, the Council of Europe, and consumer organizations such as Inclusion International, Rehabilitation International, and Disabled Peoples’ International play major roles in translating genetic innovations into health service and public health fields, helping develop policies that focus on the general recognition, respect, and protection of the rights to which all people, whether disabled or nondisabled, are entitled. Concerns related to the possible undermining of human rights are expressed in 2003 when Disabled People’s International demands a prohibition on compulsory genetic testing.

1997 Colombia: The General Act for People with Disabilities, also known as the Disability Act: Law for Opportunity, passes. The 2003–2006 National Plan of Attention to Persons with Disabilities estimates that 18 percent of the general population has some type of disability. Despite the existence of at least 37 disability-related legal policies (2001), the government provides limited spending on programs that protect the rights of people with disabilities, and the lack of enforcement of rights remains a major concern. Today’s awareness efforts include marathons with the participation of the general population to raise money for educational programs for children with special needs, Special Olympics, new organizations such as the Colombian Association for the Development of People with Disabilities, and media awareness campaigns. 1998 President Bill Clinton issues an executive order ensuring that the federal government assumes the role of a model employer of adults with disabilities. 1998 President Clinton signs into law the Rehabilitation Act of 1973 Amendments. Section 508 requires that electronic and information technology (EIT), such as federal websites, telecommunications, software, and information kiosks, must be usable by persons with disabilities. 1998 Ireland: The Irish Employment Equality Act entitles all individuals, including disabled persons, equal treatment in training and employment opportunities. The Education Act of 1998 requires schools to provide education to students that is appropriate to their abilities and needs. The

Chronology Education for Persons with Disabilities Bill passes in 2003. A Disability Bill published in 2001 fails to underpin a rights-based approach and is withdrawn amid a storm of protest in 2002; a redrafting of a new Disability Bill is suffering from continuing delays. Traditionally, Irish voluntary organizations play a reactionary role in the development of services for people with disabilities and a key role as pressure groups trying to keep disability issues on the political agenda. 1999 The National Center on Physical Activity and Disability (NCPAD) is established as an information and resource center that offers people with disabilities, caregivers, and professionals the latest information on fitness, recreation, and sports programs for people with disabilities. 1999 Established by a panel of experts brought together to evaluate the UN Standard Rules on the Equalization of Opportunities for Persons with Disability, the International Disability Alliance (IDA) encourages cross-disability collaboration and supports the participation of international disability organizations in the elaboration of a proposed UN convention on disability. 1999 England: The first disability film festival, Lifting the Lid, is held at the Lux Cinema in London. Chronology———C25

2000 The National Telability Media Center collects documentation of 3,000+ newsletters, 200 magazines, 50 newspapers, 40 radio programs, and 40 television programs dedicated to disability in the United States alone. The Ragged Edge, Mainstream (Internet-based), and Mouth are examples of disability rights-focused publications.

2000 Healthy People 2000, the second edition of the Surgeon General’s report on health promotion and disease prevention (the first edition published in 1979), includes some reference to the health and well-being of people with disabilities, but few data are available. In the mid-1990s, the U.S. Department of Health and Human Services begins a dialogue with the Centers for Disease Control and Prevention to include people with disabilities in the third edition, Healthy People 2010. The resulting report includes more than 100 objectives that include “people with disabilities” as a subpopulation for data gathering.

2000 The World Bank, increasingly concerned with how to include disabled persons in the economies and societies of developing nations, establishes an online clearinghouse to make documents concerning the disabled readily available to member nations and the general public and holds its first course on disability issues in 2004 in Guatemala.

2000 Africa: The African Decade of Persons with Disabilities, 2000–2009, is adopted by the Declaration of the Organization of African Unity. The African Network of Women with Disabilities (2001) and the community-based rehabilitation organization CBR Africa Network (CAN) are examples of the many activities that result from the African Decade.

2000 Brazil is one of the few countries to include an entire section on disability in its 2000 census. Results show that 14.5 percent of the population, roughly 24 million people, report having some form of disability, the poorest region, the northeast, reporting the highest percentage and the richest, in the south, the lowest. People with disabilities in the first half of the twentieth century have no voice or representation. In 1932, the first Pestalozzi Society, a community-based school for children with intellectual disabilities, is founded. By the end of the twentieth century, there are 146 Pestalozzi Societies and more than 1,700 chapters of the Association of Parents and Friends of the Exceptional. The first center for independent living is established in 1988 (CVI-RIO). In 1992 and 1995, CVI- Chronology RIO organizes two international conferences on disability issues called DefRio, out of which comes “Goals of the ILM,” a document that delineates the basis for the independent living movement in Brazil; however, financial support is not provided by the government, creating a struggle for sustainability. Brazil has progressive policies toward disability. The constitution includes sections on the rights of people with disabilities, and laws have been passed with regard to accessibility, education, and employment.

2000 Europe: A European Community directive requires all member states to have introduced antidiscrimination laws in the fields of employment and training by the end of 2006. It seeks to establish a general framework for equal treatment in employment and occupation and to render unlawful discrimination based on, among other categories, disability. The European Union Charter of Fundamental Rights sets out in a single text, for the first time in the EU’s history, the whole range of civil, political, economic, and social rights of European citizens. Disability is included in the general nondiscrimination clause (Article 21), but Article 26 specifically states that the Union recognizes and respects the rights of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration, and participation in the life of the community.

2000 The Human Genome Project (HGP), an international effort to specify the 3 billion pairs of genes that make up the DNA sequence of the entire human genome, produces its first draft in June 2000. Formally begun in October 1990, it is completed in 2003. C26———Chronology

2001 President Clinton declares in Executive Order No. 13217 the commitment of the United States to community-based alternatives for individuals with disabilities. This ensures that the Olmstead v. L.C. decision (1999), which mandates the right for persons with disability to live in the least- restrictive setting with reasonable accommodations, is implemented in a timely manner. The executive order directs federal agencies to work together to tear down the barriers to community living. 2001 In the United States, census data indicate that only 48 percent of citizens 25 to 64 years old with severe disabilities have health insurance compared with 80 percent of individuals with nonservere disabilities and 82 percent of nondisabled Americans. Women with disabilities in general are more likely to live in poverty than men. Minorities with disabilities are more likely to live in poverty than nonminorities with disabilities. In 2003, in the United States, about 28 percent of children with disabilities live in poor families compared with 16 percent of all children. 2001 A UN Ad Hoc Committee begins discussions for a legally binding convention under the draft title Comprehensive and Integral Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities. Its fifth session is held in early 2005. 2001 A new World Health Organization classification of people with disabilities, the International Classification of Functioning, Disability, and Health (ICF), replaces the old International Classification of Impairments, Disabilities, and Handicaps (ICIDH). The ICF definition shifts the focus from disability as an innate deficit (“medical model”) to disability as constructed through the interaction between the individual and the environment (“social model”). This shift encourages a focus on the kinds and levels of interventions appropriate to the needs of individuals. 2001 UNESCO launches pilot education projects for disabled children in Cameroon, the Dominican Republic, Egypt, Ghana, India, Madagascar, Mauritius, Nicaragua, Paraguay, South Africa, Vietnam, and Yemen. The global initiative Education for All 2000 has as its primary millennium development goal universal education by the year 2015. 2002 The U.S. Supreme Court rules that executing persons with mental retardation is unconstitutional. 2002 Disabled Peoples’ International’s 2002 Sapporo Platform, developed by 3,000 delegates from more than 90 countries, urges members to take every opportunity to seek publicity and awareness in order to change negative images of disabled people.

Chronology 2002 Canada: The Canadian International Development Bank announces the approval of the Canada- Russia Disability Program, a four-year $4 million project, focusing on education, disability studies, social work practice, social policy, and information dissemination. 2003 A national survey that updates the Disability Supplement to the 10-year-old National Health Interview Survey highlights barriers to care among the uninsured. The uninsured are four times as likely to postpone care and three times as likely to go without needed supplies. 2003 The National Association of Social Workers (NASW) issues a policy statement that discusses their core values with respect to working with people with disabilities, including self-determination, social justice, and dignity and worth of the person. The statement emphasizes that social workers are responsible to take action with people who have disabilities in advocating for their rights to fully participate in society. 2003 The Disability Awareness in Action (DAA) database contains a total of 1,910 reports of known abuse affecting nearly 2.5 million disabled people. In the area of education alone, it documents Chronology———C27

118 cases affecting 768,205 people in 67 countries. Responding to this documentation and other reports, the United Nations Commission on Human Rights creates the Global Rights campaign to address human rights abuses. Disability rights organizations use this information to insist on a UN convention on the rights of disabled people that would be legally binding on nation-states. 2003 The International Association for the Study of Pain has more than 6,700 members, representing more than 100 countries and 60 disciplinary fields. Chronic pain is one of the leading causes of recurrent and permanent disability in the developed world today, yet less than 1 percent of the U.S. National Institutes of Health’s budget supports research into mechanisms and management of pain. The U.S. Congress declares 2000–2010 the Decade of Pain Control and Research. 2004 The Journal of Gene Medicine (January) reports that 636 gene therapy clinical trials are completed or ongoing, involving 3,496 patients. The first gene therapy clinical trials begin in the early 1990s. Today Seventy to eighty percent—approximately 400 million—of the world’s disabled people (600 million, or 10 percent of the world’s population) live in the developing world, and of the world’s poorest of the poor, 20 to 25 percent are disabled. In most countries, 1 out of 10 persons has a disability. Many international efforts are under way to address poverty and disability, such as those of the Action on Disability Development and the Chronic Poverty Research Centre. Today E-health is the use of emerging interactive telecommunications technologies such as the Internet, interactive TV, kiosks, personal digital assistants, CD-ROMs, and DVD-ROMs to facilitate health improvement and health care services, including those with disabilities. E-health relies on environments that use a variety of technologies that can compensate for the lack of sensory ability. Telerehabilitation is an example of services delivered information technology and telecommunication networks. Today Celebrating difference is the mantra and visible manifestation of disability culture in all regions of the world. Chronology SEARCHING FOR AND EVALUATING WEBSITES

Anne Armstrong

The Internet, or Web, provides a vast number of assumption that “everything is in Google,” but this is channels through which researchers can find informa- a limiting misconception. No single search engine tion on virtually any subject. The expansiveness of the contains everything on the Web. Furthermore, all Web can be daunting to new researchers. On the other search engines function differently and rank results hand, researchers often assume that they have mas- differently. Therefore, sampling various search tools tered the Web in its entirety when indeed they have increases the comprehensiveness of results on any merely scratched the surface in terms of the numbers topic. This discussion outlines multiple types of search of resources they have consulted and searches they tools available on the Web and offers potential starting have performed. points for Internet research on issues related to dis- Because the field of disability studies is continually ability studies, whether from a health sciences, social evolving and inherently multidisciplinary, Web sciences, or humanities perspective. searchers can draw on previously conducted research The Web-based search tools outlined in this chapter from disciplines within the humanities, social sciences, include general search engines, subject-specialized and health sciences. This guide aims to expose begin- search engines, directories, indexes, catalogs, and ning researchers to a mixture of general and subject- Listservs. It is important to note that different types of specialized Web-based search tools, as well as search tools cover different parts of the Web. The Web strategies for performing sophisticated Web searches is composed of layers. The top layer is detectible by and criteria for evaluating websites. In addition to its general search engines, while a deeper layer termed broad subject coverage, the field of disability studies “the invisible Web” can be penetrated only by special- differs from most fields in that many researchers may ized search engines, indexes, and catalogs. Readers themselves have disabilities affecting their ability to should be aware that because the Web is in a constant perform research on the Web. For this reason, this state of flux, currently available resources may become description concludes with an overview of accessibility obsolete over time, and newer, more sophisticated search issues on the Web and suggestions for further reading. tools will undoubtedly evolve. Web Research General Search Engines OVERVIEW OF WEB-BASED RESEARCH TOOLS Most people who have searched the Web are famil- iar with sites such as Google, HotBot, or Lycos, which When approaching Web searching, researchers should allow them to enter a string of keywords into a search be aware of the multitude of search tools available to box to retrieve a list of relevant websites (see Table 1). them, in addition to the varying purposes of these These sites, referred to as search engines, search the tools. Many users approach Web searching with the Web by means of a program called a spider (also

W1 W2———Encyclopedia of Disablility

Table 1 Selected General Search Engines one day to the next, even when one is using the same search engine. Name URL

AltaVista www.altavista.com Excite www.excite.com Subject-Specialized Search Engines GO www.go.com Subject-specialized search engines (also referred to Google www.google.com as subject portals) developed by educational institu- tions, associations, government agencies, and corporate HotBot www.hotbot.com entities narrow the broad scope of the Web, providing Lycos www.lycos.com a focused channel by which researchers can search for Yahoo! www.yahoo.com information when they have determined the discipline from which their topic stems. Examples of such search engines are listed in Table 2. While subject-specialized called a robot or crawler). Since search engines tend search engines index considerably fewer websites and to index millions of websites, they are most useful for documents than general search engines, the information entering specific search terms rather than broad con- contained within them has been preselected, ideally cepts such as disability studies. by experts within a given field. Many subject-specialized While Web searchers tend to pick a favorite search search engines expose searchers to parts of the “invis- engine and return to it repeatedly, it is important to ible Web” not indexed by general search engines. note that different search engines produce varying Subject-specialized search engines can ease the results, and that a truly comprehensive Web searcher research process by whittling down the Web to a more should compare the results of multiple search engines. manageable size. However, researchers who use them The variation between search engines can be attrib- should take the time to view the criteria for selection of uted to differences between the spiders fueling the search Table 2 Examples of Subject-Specialized Search Engines engines as well as differences in Name URL Subject Coverage the level of indexing and the order in which results are Center for International http://cirrie.buffalo.edu Rehabilitation research Rehabilitation ranked. While some search Research Information engines index the full text of and Exchange documents, others may index (CIRRIE) only the first page, or merely the FamilyDoctor.org http://familydoctor.org Health sciences meta-tags, which are lines of code containing keywords. Web FirstGov www.firstgov.gov Government searchers should be aware that Google’s Uncle Sam www.google.com/unclesam Government developers of websites may HealthWeb www.healthweb.org Health sciences intentionally increase their Mayo Clinic www.mayoclinic.com Health sciences usage of certain words or meta- tags to increase the prominence MedlinePlus http://medlineplus.gov Health sciences of their website among search National Center for the www.ncddr.org Disability studies results. This practice has been Dissemination of referred to as spamdexing and Disability Research is most prevalent among the (NCDDR) developers of commercial web- Social Science www.sosig.ac.uk Social sciences sites advertising products and Information Gateway services. Due to the constant (SOSIG) fluctuation of the Web, no search Thomas http://thomas.loc.gov/ Legislative information Web Research Web engine is entirely up-to-date; Voice of the Shuttle http://vos.ucsb.edu Humanities results produced by identical searches can vary greatly from WebMD www.webmd.com Health Sciences Searching for and Evaluating Websites———W3 information contained within them. This information Table 3 Resources for Finding Subject-Specialized is usually posted within online “help” or “about” pages Search Engines on the home page. Name URL Table 3 contains search tools that have been devel- oped distinctly for the purpose of locating specialized CompletePlanet www.completeplanet search engines by subject. .com Direct Search www.freepint.com/gary/ direct.htm Directories InfoMine www.infomine.com Directories are hierarchically arranged subject Invisible Web Directory www.invisible-web.net guides composed of websites chosen by or recom- Librarians’ Index to the Internet www.lii.org mended to editors of the directory (Table 4). Usually, directories follow a template in which major subject Search Engine Colossus www.searchengine categories such as health, sciences, social sciences, or colossus.com humanities are posted on the top-level page. Each of these links leads to lists of narrower subcategories. Table 4 Selected Directories The links on the second level lead to narrower subcat- egories, and so on. A sample hierarchy from the direc- Name URL tory created by Google (available at http://directory eBlast www.eblast.com .google.com) lists the following subject breakdown: a Society → Disabled → Disability studies. Google Directory http://directory.google.com Directories provide Web searchers with the ability Internet Public Library www.ipl.org to browse recommended resources in various subject LookSmart www.looksmart.com areas without having to enter specific search terms. Yahoo! Directorya www.yahoo.com Other useful attributes of directories are that they often contain summaries and evaluations of websites. a. These sites contain both directories and general search engines.

index providers and libraries, off-site access to indexes Article Indexes is usually limited to faculty and students of a college or Article indexes allow researchers to search by topic university. However, there are many libraries that allow for published articles in magazines and scholarly members of the public to use their article indexes from journals. Researchers could certainly locate journal within the library. A local public library would be a and magazine articles using a freely available search good starting place for those not connected with acade- engine such as Google, but they would merely be mic or commercial organizations. skimming the surface of what has been published. Since article indexes are proprietary products While the Web provides access to more content, it developed by companies for sale to libraries, they tend does not provide comprehensive access to research to offer specialized search features that are not always published in journal articles. Article indexes are for available on freely available search engines. These the expressed purpose of finding journal articles. With features include subject headings, thesauri, abstracts a few exceptions (such as PubMed, an article index of (summaries of articles), and frequently the full text of health sciences journals developed and maintained by articles. Researchers should familiarize themselves the National Library of Medicine), article indexes are with online tutorials, “help” screens, and “about” pages Web Research not freely available on the Web. Libraries purchase sub- to increase the effectiveness of their searching. scriptions to multiple article indexes covering a wide Freely available article indexes relevant to disabil- spectrum of disciplines. The indexes available through a ity studies include the following: given library are often dictated by the curriculum of the college or university that the library serves. Thus, large • PubMed: A product of the National Library of research institutions offer a greater number of special- Medicine, which includes more than 14 million ized article indexes than smaller institutions and public citations for biomedical articles dating back to the libraries. Due to licensing agreements between article 1950s. URL: http://www.ncbi.nlm.nih.gov/entrez W4———Encyclopedia of Disablility

• CIRRIE: Center for International Rehabilitation Table 5 Disability Studies Listservs Research Information and Exchange, a database Name URL containing more than 24,000 citations of interna- tional research published from 1990 to the pre- ADA-LAW http://listserv.nodak. sent. URL: http://cirrie.buffalo.edu edu/archives/ ada-law.html Catalogs Disability-Research Discussion List http://www.leeds.ac .uk/disability-studies/ While researchers can search indexes to find articles discuss.htm on specific topics, they can search online catalogs to Disability Studies at Yahoo.com http://www.groups. find books. Some catalogs list the books available at yahoo.com/group/ individual libraries, while others contain the holdings disabilitystudies of multiple libraries and institutions. The individual Disabled Student Services in http://listserv.acsu. catalogs of public libraries and universities are usually Higher Education (DSSHE-L) buffalo.edu/archives/ freely available on the Web. The most comprehensive dsshe-l.html catalog is called WorldCat, developed by an organiza- Women’s International Linkage http://groups.yahoo. tion called OCLC (Online Computer Library Center). on Disability (D-WILD) com/group/d-wild WorldCat lists books available at public and academic libraries throughout the world. Like most article indexes, WorldCat is not freely available on the Web names can also be entered within quotation marks. and must be accessed through a library.

Truncation Listservs Truncation symbols allow Web searchers to simulta- Listservs are mailing lists on the Internet that facil- neously search for multiple endings of a given word. itate online discussions on various subjects. They For instance, assuming that the asterisk is the desig- allow researchers within a given field to communicate nated truncation symbol in a search engine, entering the about scholarly issues via email. People customarily word “impair*” would produce results including all sign up for Listservs by sending an e-mail to the forms of the word after the root, including “impair,” Listserv address stating that they wish to subscribe. “impaired,” “impairment” and “impairments.” In addi- Several Listservs related to disability studies are listed tion to adding truncation symbols to the end of words, in Table 5. In addition, Web searchers can perform a users may also insert internal truncation symbols if search on a database called tile.net to search for there are potential variations for the spelling of the mid- Listservs by topic. dle of a word. For instance, entering the word “colo*r” would simultaneously search for the words “color” and SEARCH STRATEGIES “colour.” “Help” screens or “search tips” usually list the designated truncation symbol for a given database. Since search capabilities vary from site to site, Web searchers should use online “help” screens and tutorials to learn search tips and strategies for improving their Boolean Logic search results. Some search techniques common to sev- Developed by the English mathematician George eral Web-based search tools are summarized below. Boole, Boolean logic is a mathematical framework that Web searchers can apply to broaden or refine their searches. There are three words, or operators, that Quotation Marks Web searchers can use to combine their keywords to When entering a search, users should enter phrases perform more complex searches: AND, OR, and NOT. in quotation marks to stipulate that they would like the The three Boolean operators are summarized below, Web Research Web results to contain a specific word combination and along with potential applications. It is important to order. For instance, multiword concepts such as “dis- read the online “help” section of a database before ability studies,” “adaptive technology,” and “section performing a Boolean search, as Boolean searching 508” should be entered within quotation marks. Proper does not work in all databases. Searching for and Evaluating Websites———W5

Using the Boolean Operator “AND” The grouping of synonymous terms within parenthesis is referred to as nesting, as multiple terms relating to the Combining words with “AND” narrows a search, as same idea are clustered together as a single concept. the database retrieves only items that contain all the When using nesting, the words within the parenthesis words entered. The second search example below will are connected by the Boolean operator “OR.” produce fewer results than the first, since there are To find information about software for people who three keywords that must appear within the content of are visually impaired, search results are increased by each result. using nesting to group multiple words for each facet of the topic: “disability studies” AND theory “disability studies” AND theory AND history (software or “adaptive technology”) AND (“visu- ally impaired” or blind)

Using the Boolean Operator “OR” Plus and Minus Signs Entering the term “OR” between keywords stipu- Most general search engines allow users to enter lates that any, but not all, of the words entered must plus or minus signs before a particular word. Entering appear within the search results. Using “OR” is a way a plus sign before a word (e.g., +ADA) stipulates that of searching for synonyms or related terms when there the word must appear within the search results. A are multiple words for the same concept. The example minus sign before a word (e.g.,–mobility) stipulates below shows how you could broaden your search if that the word should not appear within the results. you wanted to search for multiple adaptive technology Since some search engines also use plus and minus applications in a search engine. The second search signs as substitutes for Boolean operators, it is impor- example will potentially produce more results than the tant to view online “help” or “search tips.” first, since there is an additional keyword that the results could include. Search Limits JAWS OR “Ruby OpenBook” Most search engines allow users to limit their results JAWS OR “Ruby OpenBook” or “window eyes” by date, language, or document type. Limiting capabil- ities vary from site to site and are customarily outlined in online “help” screens. In general, article indexes have Using the Boolean Operator “NOT” more sophisticated limiting capabilities than search Entering the Boolean operator “NOT” after a word engines that are freely available on the Web. stipulates that the word should not appear within the results. Using “NOT” in a search can be particularly EVALUATING WEBSITES useful if a word is frequently used in multiple contexts and you wish to eliminate results dealing with a par- A researcher weighing the quality of a journal article ticular topic. In the example below, the second search faces a lesser challenge than a researcher consider- will ideally eliminate items relating to the state of ing a website as a potential resource. The publishing New Mexico, given that the researcher is looking for industry applies labels to periodicals of varying information on legislation related to disabilities in the type: Scholarly journals, popular magazines, trade country of Mexico. The use of NOT can be too limiting. publications, and newspapers comprise the major cate- The second search would eliminate results that discussed gories. Articles submitted to scholarly journals undergo both Mexico and New Mexico. a peer review process by experts in a given field. If in Web Research doubt as to the suitability of journal for scholarly Disabilities AND legislation AND Mexico purposes, a researcher can consult a directory of peri- Disabilities AND legislation AND Mexico NOT odicals such as Ulrich’s Periodicals Directory, which “new mexico” indicates whether or not a journal is peer reviewed. The fact that the Web has no comparable methods of control complicates the task of determining whether a Nesting website is appropriate for research purposes. While Nesting allows Web searchers to simultaneously websites produced by certain types of agencies and search for multiple search terms relating to the same topic. organizations certainly undergo a form of internal W6———Encyclopedia of Disablility

review, the Web is a free forum; people can post Educational sites: .edu anything they want, and no one has the right to force Government sites: .gov, .mil, or country codes to take it down if it fails to meet certain standards of (e.g., .uk = United Kingdom, .au = Australia, quality or accuracy. To complicate the matter, inaccu- .do = Dominican Republic) rate or inexpert information can hide like a wolf in Nonprofit organization sites: .org the sheep’s clothing of sophisticated graphics, layout, Commercial sites: .com and design. The Web has no peer review process to ensure quality. While none of the evaluation criteria Most URLs contain multiple levels separated by outlined below can provide the final word as to the slashes (e.g., http://www.nod.org/stats/). To learn more suitability of a website for scholarly use, a researcher about the sponsor or publisher of a particular site, you who searches the Web with multiple evaluation crite- can remove levels of the URL one by one to see where ria in mind expedites the process of finding quality the site is hosted and determine the character of the information. sponsoring entity. For instance, if a site is hosted on the site of an association, viewing the mission statement on the home page of the association can provide clues as Authorship to the bias or purpose of the content. When judging the When determining the credibility of a website, credentials of the publishing entity, researchers should researchers should use multiple techniques to deter- look for contact information and institutional logos. In mine the credentials of the author as well as the char- general, sites devoid of identifying information or con- acter of the organization hosting, or sponsoring, the tact numbers and addresses should raise suspicion. site. If individuals are listed as authors, researchers should take steps to determine their credentials and Audience reputation in the field by performing a search in a gen- eral search engine to find biographical information or When evaluating a site, researchers should determine other documents written about the author. This will whether the content succeeds in addressing the stated also produce references to the author on the sites of audience through tone and presentation. Sites for adults other authors within a field. Researchers can also con- should not have a childlike appearance or tone. Likewise, sult a number of biographical sources available at sites may be deliberately overrun by technical language libraries, such as Who’s Who in the America or sources or jargon to confuse or mislead a particular audience. tailored to particular fields of study, such as Who’s High-quality sites clearly define their intended purpose. Who in Science and Engineering. Website addresses, or URLs (Uniform Resource Currency Locators) can also provide hints as to author affiliations Medical research findings or population statistics and potential bias. Personal websites are often hosted may become obsolete at a faster rate than research in on commercial ISP (Internet Service Provider) Web servers the humanities. Web researchers should check sites such as aol.com, or geocites.com. URLs of personal web- for copyright dates and the date of the last update. sites often contain first or last names, as well as percent Broken links are a sign of neglect, as they may indi- (%) or tilde (~) signs. While personal websites may con- cate that URLs have changed or become obsolete tain authoritative information, researchers should ques- since the last update of the site. To verify the currency tion why the same content does not appear on a site of information on a site, researchers should check for sponsored by an educational or research organization.. several sites covering the same subject matter. Was the site created as a pastime or to serve as a forum for airing personal views? Or does the site reflect serious scholarship backed up by other credentials and research Accuracy published in scholarly publications? Determining accuracy involves further research Every website URL ends with a domain name, usu- to ensure that the claims or findings on a site are ally a series of three letters preceded by a period. The substantiated by other sources. If a site presents Web Research Web domain name denotes the type of institution that hosts original research, the methods of the research and the website and can often provide clues as to the purpose instruments used should be clearly explained, as well or potential bias of a site. Common domain names as potential limitations of the research. If authors include the following: make claims or conclusions, they should cite their Searching for and Evaluating Websites———W7 sources, and these sources should be tracked down to but there are certain factors that are heavily empha- ensure their existence and authenticity. Websites sized in the AMA guidelines, including the impor- should contain a list of works cited or footnotes on par tance of peer review by experts in the field, the with any print book or article. Since websites some- importance of clearly identifying sources of funding, times include fabricated resources, and erroneous or an explanation of the relationship between individual incomplete citations, sources should be verified using researchers and the institutions sponsoring the library tools such as indexes and catalogs. Lists of research, the importance of clearly stating the purpose works cited with multiple errors reflect irresponsible and intended audience of a site, and the need to research. If a website contains links, the links should address the stated audience in a consistent and effec- be checked. Researchers should be wary of websites tive tone. Seven criteria for assessing the quality of populated by broken links or links to defunct websites. health information on the Internet have been devel- oped by the Health Summit Working Group (Health Quality Information Technology Institute 1999). Information on health-related websites should be In general, sites that are poorly organized or sloppy verified by checking sources such as journal articles, should be approached with caution. Shoddy design books, and other websites. These measures are needed may point to further weaknesses. Poor grammar and as health information on the Web frequently includes spelling errors are also red flags. unsubstantiated claims. Bias While bias is not always a negative attribute, OVERVIEW OF ACCESSIBILITY Web searchers should be cognizant of bias as the ISSUES ON THE WEB search for information. The bias of a website can be partially discerned by the domain name (as discussed Disability studies research is unique in that many above under “Authorship”). Commercial websites scholars in the field have disabilities that may impact may be motivated by the goal to market a product or their ability to effectively search the Web. While in service. Nonprofit organizations may promote a politi- many ways the Web “evens the playing field” by making cal agenda. While bias may be clearly stated in mission a vast number of resources available electronically, statements and “about” pages, many websites deliber- inaccessible design frequently places barriers on Web ately shroud their bias. Thorough research involves searchers with disabilities. consulting additional sources to determine the history Principles of Web accessibility have been developed and activities of a particular organization. If a site con- by the World Wide Web Consortium’s (W3C) Web tains links to other sites, those links should be checked Accessibility Initiative (WAI). The WAI establishes to discern the character and activities of the other orga- guidelines for creating accessible websites, browsers, nizations listed. If a site is sponsored by other organi- and authoring tools to increase the ease of use of the zations, researchers should consider the relationship Web for users with disabilities. Multiple scenarios between the sponsors and the creators of the site. outlining potential challenges to Web searchers with disabilities are summarized in a W3C working draft titled “How People with Disabilities Use the Web” Special Considerations for (2001). Among other scenarios, the document empha- Evaluating Health Information on the Web sizes that many Web searchers with cognitive or visual

The American Medical Association (AMA) has disabilities use OCR (optical character recognition) Web Research published “Guidelines for Medical and Health software, which reads Web page text and transmits the Information Sites on the Internet” outlining evaluation information to a speech synthesizer and/or refreshable criteria for websites publishing health information, Braille display. Many users with visual disabilities whether for consumers or health professionals. While use text-based Internet browsers instead of standard these guidelines are technically enforced only on sites graphical browsers. The successful use of these tools sponsored by the AMA or affiliated organizations, requires that images on websites be accompanied by they could be applied to all sites containing health descriptive text and ALT tags. ALT tags are textual information. Many of these guidelines mirror the labels that appear on the computer screen when a previously outlined criteria for evaluating all websites, mouse moves over an image. Since visually impaired W8———Encyclopedia of Disablility

Web searchers often enlarge Web-based text using Further Readings screen magnification programs, Web designers must Ackermann, Ernest C. and Karen Hartman. 2000. The Information create pages with nonfixed font sizes that can be Specialist’s Guide to Searching & Researching on the Internet altered as necessary. These are only a few of the issues & the World Wide Web. Chicago: Fitzroy Dearborn. facing Web searchers with disabilities. Other popula- Blasiotti, Ellen Liberti, Iwao Kobayashi, and John Westbrook. tion groups with disabilities discussed in the guide- 2001. “Disability Studies and Electronic Networking.” lines include individuals with cognitive disabilities, Pp. 327–347 in Handbook of Disability Studies, edited by hearing impairment, and mobility-related disabilities. Gary L. Albrecht, Katherine D. Seelman, and Michael Bury. Readers should consult the WAI website for the com- Thousand Oaks, CA: Sage. plete guidelines (http://www.w3.org/WAI/). Bradley, Phil. 2002. Internet Power Searching: The Advanced To support the goals of WAI, an online tool called Manual. NewYork: Neal-Schuman. Bobby™ helps website developers test the accessibil- Conner-Sax, Kiersten and Ed Krol. 1999. The Whole Internet: The Next Generation—A Completely New Edition of the First and ity of their sites and adhere to accessibility guidelines. Best User’s Guide to the Internet. Beijing and Cambridge, By entering a URL into the Bobby website, a Web MA: O’Reilly. developer can generate a report outlining which Davoren, J. B. 1998. “Searching the Internet.” Pp. 129–144 in features of the site need to be adjusted to make it Evidence Based Medicine: A Framework for Clinical Practice, “Bobby compliant” and adhere to both W3C accessi- edited by D. J. Friedland. Stamford, CT: Appleton & Lange. bility guidelines and guidelines established by the Harris, Robert H. 2000. A Guidebook to the Web. Guilford, CT: U.S. government’s Section 508, a 1998 amendment to Dushkin/McGraw-Hill. the Rehabilitation Act requiring that all federal agen- Health Information Technology Institute. 1999. “Criteria for cies make their electronic and information technology Assessing the Quality of Health Information on the Internet— accessible to people with disabilities. Complete infor- Policy Paper.” Mitretek Systems. Retrieved June 22, 2004 mation about these guidelines can be found on the (http://hitiweb.mitretek.org/docs/policy.html). Section 508 website (www.section508.gov). Johnstone, David. 2001. An Introduction to Disability Studies. London: David Fulton. World Wide Web Consortium (W3C), Education and Outreach Working Group. 2001. “How People with Disabilities Use CONCLUSION the Web: W3C Working Draft, 4 January 2001.” Retrieved June 29, 2004 (http://www.w3.org/WAI/EO/Drafts/PWD- While “one-stop shopping” in Google may be tempting, Use-Web/Overview.html). there is no single search engine leading to everything on the Web. Comprehensive and effective research in Websites disability studies involves consulting multiple search American Medical Association, “Guidelines for Medical and tools, including but not limited to general search engines, Health Information on the Internet,” http://www.ama-assn subject-specialized search engines, directories, and .org/ama/pub/category/ print/1905.html indexes. In addition to using multiple search tools, Olin & Uris Libraries, Cornell University Library, “Evaluating Web searchers should experiment with multiple search Web Sites: Criteria and Tools,” http://www.library.cornell.edu/ strategies to maximize the effectiveness of their olinuris/ref/research/webeval.html searching. As there are no standards of quality on the Schnall, Janet G., HealthLinks, University of Washington, “Navigat- Web, researchers should apply multiple evaluation cri- ing the Web: Using Search Tools and Evaluating Resources,” teria to every website, verifying that research findings http://healthlinks.washington.edu/howto/navigating posted on sites are supported by other sources. Web Section 508, http://www.508.gov accessibility is a crucial component to disability studies, Sheridan Libraries of the Johns Hopkins University, “Evaluating as the Web has the potential to deliver equal content to Information Found on the Internet,” http://www.library.jhu .edu/elp/useit/evaluate/ all users but frequently presents barriers to people with UC Berkeley Library, “Finding Information on the Internet: A disabilities by failing to adhere to standards of accessi- Tutorial,” http://www.lib.berkeley.edu/TeachingLib/Guides/ ble design. Researchers can develop an awareness of Internet/FindInfo.html accessibility issues on the Web by familiarizing them- University of Illinois at Chicago, Library the Health Sciences Peoria, Web Research Web selves with the standards outlined by W3C’s Web “Finding Information on the Internet: Evaluating Web Sites,” Accessibility Initiative and Section 508. http://www.uic .edu/depts/lib/lhsp/resources/evaluate.shtml