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Disability Is Not Measles: New Research Paradigms in Disability. INSTITUTION Roeher Inst., North York (Ontario)

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Disability Is Not Measles: New Research Paradigms in Disability. INSTITUTION Roeher Inst., North York (Ontario) DOCUMENT RESUME ED 390 194 EC 304 458 AUTHOR Rioux, Marcia H., Ed.; Bach, Michael, Ed. TITLE Disability Is Not Measles: New Research Paradigms in Disability. INSTITUTION Roeher Inst., North York (Ontario). REPORT NO ISBN-I-895070-34-1 PUB DATE 94 NOTE 295p. AVAILABLE FROM L'Institut Roeher, Kinsmen Building, York University, 4700 Keele St., North York, Ontario M3J 1P3, Canada. PUB TYPE Books (010) Collected Works Conference Proceedings (021) EDRS PRICE MF01/PC12 Plus Postage. DESCRIPTORS Civil Rights; *Disabilities; Foreign Countries; Labeling (of Persons); Mental Retardation; Models; Normalization (Disabilities); *Political Influences; Quality of Life; *Research Methodology; *Research Problems; Semiotics; Social Discrimination; *Social Influences; Social Integration; *Social Science Research; Social Stratification; Social Systems IDENTIFIERS *Attitudes toward Disabled; Empowerment ABSTRACT This book is the product of a forum titled New Research Directions and Paradigms, held at the Congress of the International Association for the Scientific Study of Mental Deficiency in Australia in August 1992. The book presents 13 chapters, all written within a critical paradigm for disability research which critiques the reification of disability entrenched through a positivist theory of knowledge and focuses on the social, economic, political, and legal construction of disability. This paradigm sees disability as socially constructed rather than an inherent and fixed feature of a person and examines disability research questions through the lens of human rights and ethics. The following chapters are included: (1) "New Research Directions and Paradigms: Disability Is Not Measles" (Marcia H. Rioux);(2) "Intellectual Disability and the Heritage of Modernity" (John P. Radford); (3) "What Matters Most: Disability, Research and Empowerment" (Linda Ward and Margaret Flynn);(4) "Towards Inclusion: The Role of People with Disabilities in Policy and Research Issues in the United States--A Historical and Political Analysis" (living Kenneth Zola);(5) "Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality" (Marcia H. Rioux);(6) "Voluntary Disabilities and Everyday Illnesses" (Jerome E. Bickenbach); (7) "Quality of Life: Questioning the Vantage Points for Research" (Michael Bach);(8) "Naming and Renaming Persons with Intellectual Disabilities" (Fred E. Stockholder); (9) "Knowing about Knowing: Margin Notes on Disability Research" (Aileen Wight Felske); (10) "The Social Semiotics of Disability" (Gary Woodill); (11) "Setting One Agenda for Empowering Persons w:th a Disadvantage within the Research Process" (Paul Ramcharan and Gordon.Grant); (12) "Theoretical Framework for What Persons with Severe and Profound Multiple Intellectual Disabilities Do in Context" (John J. Gleason); and (13) "The Politics of Care-Giving" (Robyn Munford). Most chapters contain reference notes.(DB) , frlt A'r , New Research Paradigms inDisability U 5 DEPARTMENT OF EDUCATION Office ot Educatronal Research and improvement EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) This document has been reproduced as recerved Irom the person or orgenrzation orrginatmg it 0 Minor changes save been made to improve reproduction Quality Points of vrew or opinions stated in this docu rnent do nOt necessarily represent official OE RI positron or policy BEST COPY AV ABLE I "PERMISSION TO REPRODUCE THIS 4?41.1're. I MATERIAL HAS BEEN GRANTED BY rn tco0 TO THE EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) " Disability IsNot Measles New Research Paradigms inDisability Edited by Marcia H. Rioux and MichaelBach L'INSTITUT RNOEHER 1994 l'Institut Roeher Institute All rights reserved. The useof any part of this publication reproduced, transmitted in anyform by any means, electronic, in a mechanical, photocopying,recording or otherwise, or stored retrieval system, without theprior consent of the publisheris an infringement of the copyright law. Canadian Cataloguing inPublication Data Main entry tinder title: Disability is not measles: newresearch paradigms in disability Includes bibliographical references ISBN 1-895070-34-1 1. Handicapped Research -Moral and ethical aspects. 2.Research Moral and ethical aspects. I.Rioux, Marcia H. II. Bach,Michael. Roeher Institute. 11\11568.1)58 1994 362.4'072 C94-931574-5 I:Institut Rocher Institute Kinsmen Building York University 4700 Kee le Street North York, Ontario M3J 1P3 Tel.: (416) 661-9611 Fax: (416) 661-5701 "I'DD: (416) 661-2023 Institute Executive Director:Marcia 11. Rioux, PhD Editors: Marcia I I. Rioux andMichael Bach Publications Editor: 1,aura Code Desktop Publishing: DeanN1cCallum L'Institut Roeher Institute Canada's National Institute for the Study of Public Policy Affecting Persons with an Intellectual Impairment and Other Disabilities Institut Roeher Institute is Canada's leading organization to promote the equality, participation and self-determination of people with intellectual and other disabilities, by examining the causes of marginalization and by providing research, information and social development opportunities. To fulfill this mandate, l'Institut Roeher Institute is engaged in many activities: research and public policy analysis: publishing; information dissemination; and training, education and leadership development. L'Institut Roeher Institute acts as a centre for the development and exchange of ideas, all of which are foUnded on a new way of looking at disability and society. It critically examines issues related to the well-being and human rights of persons with an intellectual impairment and other disabilities. Based on its examination of these issues, The Institute raises awareness about the barriers that affect people's full participation and prevent them from exercising their rights. The Institute also presents policy and program alternatives. For more information about linstitut Rocher Institute please contact us at: Kinsmen Building York University, 4700 Kee le St. North York, Ont. M3J 1P3 Tel: (416) 661-9611 Fax: (416) 661-5701 RNOENERTDD: (416) 661-2023 41 Contents Foreword vii Introduction New Research Directions and Paradigms: Disability Is Not Measles Marcia H. Rioux 1 Chapter 1. Intellectual Disability and the Heritage of Modernity John P. Radford 9 Chapter 2. What Matters Most: Disability, Research and Empowerment Linda Ward and Margaret Flynn 29 Chapter 3. Towards Inclusion: The Role of People with Disabilities in Policy and Research Issues in the United States A Historical and Political Analysis Irving Kenneth Zola 49 Chapter 4. Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality Marcia H. Rioux 67 Chapter 5. Voluntary Disabilities and Everyday Illnesses Jerome E. Bickenbach 109 Chapter L. Quality of Life: Questioning the Vantage Points for Research Michael Bach 127 Chapter 7. Naming and Renaming Persons with Intellectual Disabilities Fred E. Stockholder 153 Chapter 8. Knowing about Knowing: Margin Notes on Disability Research Aileen Wight Felske 181 Chapter 9. The Social Semiotics of Disability Gary Woodill 201 Chapter 10. Setting One Agenda for Empowering Persons with a Disadvantage within the Research Process Paul Ramcharan and Gordon Grant 227 Chapter 11. Theoretical Framework for What Persons with Severe and Profound Multiple Intellectual Disabilities Do in Context John J. Gleason 245 Chapter 12. The Politics of Care-giving Robyn Munford 265 Contributors 285 Foreword l'wo discordant sets of research findingshave made some researchers in the field of disability uncomfortable.On one hand, research and development has moved rapidly inthc biomedical field and in designing sophisticated technologyfor use by people with disabilities. On the other hand, researcfrinthe social sciences and in law show that, despite biomedicaland technical developments, the barriers to equality and 'full inclusionhave changed very little for people with disabilities. Thisdiscordance suggests thatwe are at a juncture. It suggests the need tostep back and reflect upon the research enterprise itself. Theoreticalframeworks and research paradigms in the field of disability illuminatesome possibilities for people and foreclose others. Thenature and influence of these frameworks have mostly been ignoredin terms of defining the direction of research, thcway in which research questions arc structured and the significance of thefindings. Although aprocess of reflection has begun, enough barriersremain to the equality and full inclusion of people with disabilitiesto suggest that we may not be stepping back far enough inour reflection. In other words, we sometimes forget to question how thequestions are being asked. This is the task the contributorsto this book have set for themselves. In exploring issues that havegone unaddressed in thc predominant framework for thinking aboutdisability, they look outside the field of disabilityfor research paradigms and methodologies that can be used fruitfullyin this field. Together these explorations expand the boundariesof what can be considered serious research in the field of disability. By not limiting themselvesto the parameters of the prevailing framework, these researchersact as a catalyst for critical disability research. 'Ile directions they chartnot only satisfy the requirements of rigorous research, they also providetheoretical justification and Disability I. Aro! Measles practical tools for bridgingthe gap that createssilences between the researeh communityand people with disabilities. All the
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