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Disability Oppression and Empowerment

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Nothing About Us Without Us This page intentionally left blank NOTHING ABOUT US WITHOUT US Disability Oppression and Empowerment James 1. Charlton UNIVERSITY OF CALIFORNIA PRESS Berkeley / Los Angeles / London Quot.uiolls ti'onl Eugene Willi,llllS, Idt:lfS Study Visit RCp01-t, .\fe reprinted by pennission of thc World Institutc on l)is~lbility. Quotation ti'onl JC.lll Stcwart, TbL' Rody's M,,·II'W1"."., cop~ ...ight © 1989 by Jean Stcwart, is reprinted by pcrnlissioll ofSt. 1\1,lrtin IS Press Incorpor~\ted. Quot,uion ti'onl J,lnlcs Baldwin, No NtUI'U' i11 tbe Strfct, copyright © 1972 by )allles It;lldwin., is reprinted by pCrlnission of Doubleday, .1 di\'ision of B,lnt~lnl l)oubleday l)cH Publishing (,roup., Inc. Quot,nion ti'onl l)crrick Bell., FaCt's at tbf Rottmn oftilL' Well, copyright © 1992, is rcprintcd b~' pernlission of HarpcrCollins Publishcrs. University of California Press Berkeley and Los Angeles, California University of California Press London, England First paperback printing 2000 Copyright © 1998 by The Regents of the University of California Library of Congress-in-Publication Data Charlton, James 1. Nothing about us without us : disability oppression and empowerment / James I. Charlton. p. em. Includes bibliographical references and index. ISBN 978-0-520-22481-0 (pbk. : alk. paper) I. Handicapped-Civil rights. 2. Handicapped-Social conditions. 3. Discrimination against the handicapped. 4. Sociology of disability. 5. Stigma (Social psychology) I. Title. HV1568.C37 1998 323.3'087-DC21 97-1661 CIP Printed in the United States ofAmerica 08 07 9 8 765 4 The paper used in this publication is both acid-free and totally chlorine-free (TCF). It meets the minimum requirements of ANSI/NISO Z39.48-1992 (R 1997) (Permanence ofPaper). e To My Mother and Father for Everything To Ed Roberts and the Movement He Touched This page intentionally left blank Contents THE ARGUMENT ix ACI<NOWLEDGMENTS xi PEOPLE INTERVIEWED xiii PART I. INTRODUCTION 1. Nothing About Us Without Us 3 PART II. DISABILITY OPPRESSION AND EVERYDAY LIFE 2. The Dimensions ofDisability Oppression: An Overview 21 3. Political Economy and the World System 37 4. Culture(s) and BeliefSystems 51 5. Consciousness and Alienation 69 viii CONTENTS 6. Observations on Everyday Life 83 PART III. EMPOWERMENT AND ORGANIZATION 7. Empowered Consciousness and the Philosophy ofEmpowerment 115 8. The Organization ofEmpowerment 130 PART IV. CONCLUSION 9. The Dialectics ofOppression and Empowerment 153 NOTES 169 BIBLIOGRAPHY 179 INDEX 195 The Argument The lived oppression that people with disabilities have experienced and continue to experience is a human rights tragedy of epic proportions. Only in the last few decades has this begun to be recognized and re­ sisted. Today, in fact, we are witnessing a profound sea change among people with disabilities. For the first time, a movement of people with disabilities has emerged in every region ofthe world which is demand­ ing a recognition of their human rights and their central role in deter­ mining those rights. There are a number ofunifying arguments that run throughout this book which attempt to synthesize both the conditions ofdisability op­ pression and the exigencies of its resistance: (1) the oppression of 500 million people with disabilities·is rooted in the political-economic and cultural dimensions ofeveryday life; (2) the poverty, isolation, indignity, and dependence ofthese 500 million people with disabilities is evidence of a major human rights catastrophe and a fundamental critique of the existing world system; (3) the scant attempts to theorize the conditions ofeveryday life for people with disabilities are either incomplete or fun­ damentally flawed as a result of the medicalizationjdepoliticization of disability and the failure to account for the vast majority ofpeople with disabilities who live in the Third World; (4) a disability-based conscious­ ness and organization is emerging throughout the world which has be­ gun to contest both the oppression people with disabilities experience and the depoliticization of that experience; (5) the political-economic and sociocultural dimensions of disability oppression determine who is x THE ARGUMENT affected and the form resistance takes; (6) notwithstanding the impor­ tance ofpolitical-economic and sociocultural differences, all the individ­ uals and organizations that have taken up the cause ofdisability rights in the last twenty years have embraced the concepts ofempowerment and human rights, independence and integration, and self-help and self­ determination; and (7) these leitmotifs suggest a necessarily fundamen­ tal reordering ofglobal priorities and resources based on equality, respect, and control ofresources by the people and communities that need them. Acknowledgments I have been thinking about the subject matter ofthis book since 1985 when I met people associated with the Organizaci6n de Revolucionar­ ios Deshabilidades (ORD) in Managua, Nicaragua. It was in the midst ofthe proxy war the United States was waging against that country, and although the devastation was widespread, it was quickly evident that ORD had been responsible for many impressive changes for people like myself in their country. By then I had been to Latin America many times, but I had not pre­ viously met other politically active people with disabilities. Myexperi­ ence in Nicaragua motivated me to seek out similar experiences else­ where. In 1991 I received funding from the Institute on Disability at the University of New Hampshire. This grant allowed me to spend a month with members ofthe National Council ofDisabled Persons Zim­ babwe (NCDPZ), an extraordinary disability rights organization. In 1992 I received a one-year fellowship from the Chicago Community Trust, and it is with their assistance that most of the research for this book was done. During that year I visited Mexico, Brazil, South Mrica, I(enya, India, Thailand, Indonesia, and Hong I(ong. Much ofthe credit for the insights in this book goes to my colleagues in the disability rights movement in the United States, especially my comrades in Chicago. I am also indebted to dear friends with whom I have been engaged in political projects over the last twenty-five years. I would like to thank Access Living ofMetropolitan Chicago, where I have worked since 1985, for providing me with love, encouragement, xii ACI<NOWLEDGMENTS and sensibility. I would also like to acknowledge the contacts provided me by the World Institute on Disability in Oakland and Disabled Peo­ ples' International in Winnipeg. Those who assisted me with ideas, comments, and contacts are too numerous to mention here, but I must single out a few ofthem: Caro­ line Harney, Tom Wilson, James Potter, Nancy Reed, Roberto Rey, Alexander Phiri, Rebecca Gonzales, Mauricio Ortiz, Orlando Perez, Fri­ day Mavuso, Marceo Oliviero, Ed Roberts, Marca Bristo, Rosangela Berman, Diane Woods, Susan Nussbaum, Terry Turner, and Mel Rothenberg. I will always be grateful for the support of Stan Holwitz and Michelle Nordon and the editorial suggestions ofSheila Berg at the University ofCalifornia Press. People Interviewed I have had the good fortune to interview disability rights activists over the course ofmany years in the following countries: the United States, Mexico (numerous trips, 1984-1995), Nicaragua (1985), Cuba (1989), Brazil (1988, 1992), Zimbabwe (1991), South Mrica (1992), India (1993), Thailand (1993), Indonesia (1993), Hong I(ong (1993), and England and Sweden (1995-1996). The following people are the disability rights activists interviewed. I have provided the organizational affiliation they had at the time of the interview when useful. I do so for identification purposes only as each individual was expressing his or her own political analysis unless other­ wise indicated. The Americas Felipe Barrera, disabled combatant, activist, San Salvador, El Salvador Rosangela Berman Bieler, president, Centro de Vida Independente do Rio de Janeiro (CVI, Center for Independent Living), Rio de Janeiro, Brazil Gabriella Brimmer, poet, member, Asociacion de Personas con Im­ pedimentos Fisicos (Association of Persons with Physical Impedi­ ments); Asociacion para los Derechos de Persons con Alteraciones xiv PEOPLE INTERVIEWED Motoras (ADEPAM, Association for the Rights of Persons with Different Mobility), Mexico City Maria Luiza Camera, writer, activist, Salvador, Brazil Angel PIa Cisneros, economic development secretary, Asociacion Cubana de Limitados Fisicos Motores (Association of Cubans with Physical Motor Limitations, ACLIFIM), Havana, Cuba Maria da Comcei<;ao Caussat, attorney, activist, Rio de Janeiro, Brazil Mike Ervin, local coordinator, ADAPT, Chicago, Illinois Ida Hilda Escalona del Toro, presidente, ACLIFIM, Havana, Cuba Paulo Saturnino Figueiredo, activist, Belo Horizonte, Brazil Federico Fleischmann, president, Libre Acceso, A.C. (Free Access), Mexico City Arnaldo Godoy, city council member, activist, Belo Horizonte, Brazil Pablo Medina, military commandant, Sandinista Front; member of Organizacion de Revolucionarios Deshabilitados (Organization of Disabled Revolutionaries, ORD), Leon, Nicaragua Cornelio Nunez Ordaz, president, Asociacion Oaxaquefia de. De­ sportes sobres Silla de Reuda, A.C. (Wheelchair Sports Association ofOaxaca), Oaxaca, Mexico Orlando Perez, external secretary, ORD, Managua, Nicaragua Judy Panko Reis, administrative director, Health Clinic for Women with Disabilities, Chicago, Illinois Ed Roberts, president, World Institute on Disability, Oakland, California
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