Handbook of Disability Studies
Publication Year: 2001
This path-breaking Handbook of Disability Studies signals the emergence of a vital new area of scholarship, social policy and activism. Drawing on the insights of disability scholars around the world and the creative advice of an international editorial board, the book engages the reader in the critical issues and debates framing disability studies and places them in an historical and cultural context. Five years in the making, this one volume summarizes the ongoing discourse ranging across continents and traditional academic disciplines. The Handbook answers the need expressed by the disability community for a thought provoking, interdisciplinary, international examination of the vibrant field of disability
- Front Matter
- Back Matter
- Subject Index
Part I: The Shaping of Disability Studies as a Field
- Chapter 2: An Institutional History of Disability
- Chapter 3: Counting Disability
- Chapter 4: Disability Definitions, Models, Classification Schemes, and Applications
- Chapter 5: Theorizing Disability
- Chapter 6: Methodological Paradigms That Shape Disability Research
- Chapter 7: Disability: An Interactive Person-Environment Social Creation
- Chapter 8: Representation and Its Discontents: The Uneasy Home of Disability in Literature and Film
- Chapter 9: Philosophical Issues in the Definition and Social Response to Disability
- Chapter 10: Disability and the Sociology of the Body
- Chapter 11: Intellectual Disabilities—Quo Vadis?
- Chapter 12: Disability, Bioethics, and Human Rights
- Chapter 13: Disability Studies and Electronic Networking
Part II: Experiencing Disability
- Chapter 14: Divided Understandings: The Social Experience of Disability
- Chapter 15: Mapping the Family: Disability Studies and the Exploration of Parental Response to Disability
- Chapter 16: Disability and Community: A Sociological Approach
- Chapter 17: Welfare States and Disabled People
- Chapter 18: Advocacy and Political Action
- Chapter 19: Health Care Professionals and their Attitudes to ward Decisions Affecting Disabled People
- Chapter 20: The Role of Social Networks in the Lives of Persons with Disabilities
- Chapter 21: Inclusion/Exclusion: An Analysis of Historical and Cultural Meanings
Part III: Disability in Context
- Chapter 22: Disability Culture: Assimilation or Inclusion?
- Chapter 23: Identity Politics, Disability, and Culture
- Chapter 24: Making the Difference: Disability, Politics, and Recognition
- Chapter 25: Disability Human Rights, Law, and Policy
- Chapter 26: The Political Economy of the Disability Marketplace
- Chapter 27: Disability and Health Policy: The Role of Markets in the Delivery of Health Services
- Chapter 28: Disability Benefit Programs: Can we Improve the Return-to-Work Record?
- Chapter 29: A Disability Studies Perspective on Employment Issues and Policies for Disabled People: An International View
- Chapter 30: Science and Technology Policy: Is Disability a Missing Factor?
- Chapter 31: Disability, Education, and Inclusion: Cross-Cultural Issues and Dilemmas
- Chapter 32: Support Systems: The Interface between Individuals and Environments
- Chapter 33: The Relationship between Disabled People and Health and Welfare Professionals
- Chapter 34: Public Health Trends in Disability: Past, Present, and Future
- Chapter 35: Disability in the Developing World
This path-breaking international handbook of disability studies signals the emergence of a vital new area of scholarship, social policy and activism. Drawing on the insights of disability scholars around the world and the creative advice of an international editorial board, the book engages the reader in the critical issues and debates framing disability studies and places them in an historical and cultural context. Five years in the making, this one volume summarizes the ongoing discourse ranging across continents and traditional academic disciplines. To provide insight and perspective, the volume is divided into three sections: The shaping of disability studies as a field; experiencing disability; and, disability in context. Each section, written by world class figures, consists of original chapters designed to map the field and explore the key conceptual, theoretical, methodological, practice and policy issues that constitute the field. Each chapter provides a critical review of an area, positions and literature and an agenda for future research and practice. The handbook answers the need expressed by the disability community for a thought provoking, interdisciplinary, international examination of the vibrant field of disability studies. The book will be of interest to disabled people, scholars, policy makers and activists alike. The book aims to define the existing field, stimulate future debate, encourage respectful discourse between different interest groups and move the field a step forward.
Copyright © 2001 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.
Cover Illustration: Raphael, The Fire of Borgo. Courtesy of the Vatican Museums.
Sage Publications, Inc.
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Printed in the United States of America
Library of Congress Cataloging-in-Publication Data
Albrecht, Gary L.
Handbook of disability studies/by Gary L. Albrecht, Katherine D. Seelman, and Michael Bury.
Includes bibliographical references and index.
ISBN 0-7619-1652-0 (cloth: alk. paper)–ISBN 0-7619-2874-X (pbk.)
1. Disability studies—Handbooks, manuals, etc. 2. Sociology of disability—Handbooks, manuals, etc. I. Seelman, Katherine D.
II. Bury, Michael. III. Title.
01 02 03 10 9 8 7 6 5 4 3 2 1
Acquiring Editor: Rolf Janke
Editorial Assistant: Karen Wiley
Production Editor: Diana E. Axelsen
Editorial Assistant: Candice Crosetti
Copy Editor: Gillian Dickens
Typesetter/Designer: Janelle LeMaster
Indexer: Mary Mortensen
Cover Designer: Ravi Balasuriya
International Editorial Advisory Board
Barbara M. Altman, Agency for Healthcare Research and Quality, Rockville, MD
Adrienne Asch, Wellesley College
Len Barton, University of Sheffield, England
Ian Basnett, Deputy Director of Public Health for Camden and Islington Health Authority, London
Isabelle Baszanger, Director of Research at CNRS, Paris, France
Jerome Bickenbach, Queen's University, Ontario, Canada
Scott Campbell Brown, U. S. Department of Education, Washington, DC
Lennard J. Davis, University of Illinois at Chicago
Gerben De Jong, National Rehabilitation Hospital Research Center, Washington, DC
Sally French, Open University, Buckingham, England
Glenn T. Fujiura, University of Illinois at Chicago
Carol J. Gill, University of Illinois at Chicago
David B. Gray, Washington University School of Medicine
Tamar Hellar, University of Illinois at Chicago
June Isaacson Kailes, Disability Policy Consultant, Playa del Ray, CA
Michael P. Kelly, University of Greenwich
Paul Leung, Deakin University, Melbourne, Australia
Simi Litvak, World Institute on Disability, Oakland, CA
Paul Longmore, San Francisco State University
David Mitchell, Northern Michigan University
Mike Oliver, University of Greenwich
Adolf D. Ratzka, Institute on Independent Living, Stockholm, Sweden
Susan Reynolds-Whyte, University of Copenhagen
Marcia Rioux, York University, Canada
Richard Scotch, University of Texas at Dallas
Tom Shakespeare, University of Leeds
Bryan S. Turner, University of Cambridge
Gareth Williams, Cardiff UniversityReviewers
Ronald Amundsen, University of Hawaii at Hilo
Patrick Devlieger, University of Leuven
David Keer, NIDRR, U.S. Department of Education
Christopher Keys, University of Illinois at Chicago
Mark Priestly, University of Leeds
The ideas for this handbook germinated in the American civil rights movement of the 1960s and took root in the international human rights impetus of the past 25 years. The handbook represents the tensions between academic scholarship and the passion of activists; the different perspectives of disability studies and rehabilitation sciences; the uneasy coalition of disabled people with health professionals, technicians, and policymakers; and the value conflicts between aggressive capitalism, social welfare states, and the poor who struggle for survival in industrial and developing countries. We acknowledge and thank those who first broke the ground in this fertile and important field.
Development of multidisciplinary, international projects takes place in extensive social networks. As a consequence, many individuals contributed to the evolution of the handbook project. Our enthusiasm to produce the handbook became focused in animated conversations with colleagues, activists, members of the silent majority of disabled people, policymakers, government leaders, and Sage Publications over a period of years in England, France, and the United States. Chris Rojek and Stephen Barr provided the opportunity to produce a book prospectus and extensive feedback from anonymous international reviewers, which helped us hone the original concept into a more complete and representative whole. Rolf Janke continuously supported the project with vision and marshaled the forces at Sage to ensure a high-level product.
Many individuals and organizations helped shape the field of disability studies over the years. While we have an enormous intellectual debt to all of them, it is impossible to remember everyone who contributed to the field and movement. However, we would like to acknowledge the special contributions over the years of Irv Zola, Judy Heumann, Ed Roberts, Marca Bristo, Philip Wood, Margot Jefferys, Mike Oliver, Paul Long more, Richard Smith, David Pfeiffer, Corrine Kirchner, Jane West, Lois Verbrugge, David Grey, Dudley Childress, Catherine Barral, Henry Betts, Carl Granger, Bob Gris, Jimmy Carter, Kathy Charmaz, Anselm Strauss, Eliot Freidson, Jonathan Mann, Ray Fitzpatrick, Mary Boulton, Jerry Ross, Norman Denzin, Isabelle Baszanger, John McKinlay, Paul Higgins, Gerald Dwork in, Patrick Devlieger, Lu Ann A day, Robert At chley, Donald Light, Ed Laumann, Sander Gilman, Russ Bernard, Jack Kemp, Byron Hamilton, Claude Hamonet, Henri Paicheler, Claudine Herzlich, and Derek Wade, who displayed vision, offered insights into the disability world, and raised innumerable theoretical, policy, and real-life issues.
The International Advisory Editorial Board members were an invaluable help in reviewing the book prospectus, suggesting authors, and reviewing manuscripts. Their high standards, diversity of background and opinions, and insights into the critical issues of the field improved the conception of the book and individual chapters. The distinguished authors also gave freely [Page x]of their time and advice in offering suggestions to improve the book and in reviewing manuscripts. In addition, many other colleagues eagerly engaged in debates, offered ideas, and reviewed individual manuscripts.
Academic visits by Gary Albrecht to Nuffield College, the University of Oxford, Maison des Sciences de l'Homme in Paris, and as a lecturer in disability studies to Australia provided the time and atmosphere to conceive the project, engage colleagues, and test ideas. David Cox and Anthony Atkinson set a scholarly tone at Nuffield College, and the Fellows provided the encouragement to persist in a daunting undertaking. Jean-Luc Lory and colleagues at the Maison des Sciences de l'Homme opened the world of French intellectual life and provided contacts and perspectives to deepen the thinking in the book. In Australia, Wendy Seymour, Roy Brown, Karen Nankeris, Barrie O'Conner, Greg Murphy, and Trevor Parmenter orchestrated a three-week moving seminar on disability studies in Adelaide, Melbourne, and Sydney. Bedirhan Üstün, Jerome Bickenbach, and Alan Lopez at the World Health Organization in Geneva and Serge Moscovici and Robert Castel at the l'École des Hautes Études en Sciences Sociales in Paris provided welcome insights into disability in developing countries.
The immediate impetus for the project came in May 1995 when the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR) Steering Committee on Disability Studies recommended the development of a “seminal handbook on disability studies.” During the entire production process, the unwavering support of the entire NIDRR staff made this enormous task possible.
David Mitchell and Sharon Snyder were the source and inspiration for the book cover. Their interest in the depiction of disability in art and literature over the years led them to study Raphael's painting, The Fire of Borgo, in context at the Vatican Museum. They are to be credited with selecting this painting for the cover and helping with its meaningful interpretation. Ravi Balasuriya, the art director at Sage, translated the concept into reality.
The administration, faculty, and staff of the Department of Disability and Human Development at the University of Illinois at Chicago were encouraging at every stage of the project. Special thanks go to David Braddock for his vision, belief, and administrative support. The production of the book was coordinated by our editorial assistant, Reena Verghese, whose management skills, attention to detail, and cheerful reminders of deadlines helped move the book from a dream to a reality. Maggi Lunde at the School of Public Health, University of Illinois, handled innumerable phone calls, e-mail files, and express mail packages that kept the project efficiently moving. Pamela Ippoliti was a sage adviser in organizing the project. Gigi Thomas and Sharla Willis de Lopez set up the original project files. Glenn Fujiura and Dale Mitchell cheerfully solved numerous budgetary problems. Kiyoshi Yamaki was ever present to solve computer glitches, especially those dealt by nasty worms and viruses from all over the world that sneaked through virus protection software. We also thank our technical editor, Phyllis Crittenden, who reviewed all chapter manuscripts for form and technical consistency, and William Sayers, who translated the Ravaud and Stiker chapter. Finally, we thank our families, who provided unwavering support during the exciting but difficult process of bringing this book into being. In sum, the handbook was a worldwide effort made possible by generous people from multiple social networks.
To Disabled People
About the Contributors[Page 843]
Gary L. Albrecht is Professor of Public Health and of Disability and Human Development at the University of Illinois at Chicago. His current work focuses on the quality of life of persons with disabilities based on National Institutes of Healthfunded studies of disabled women experiencing the menopausal transition, a three-nation study of risk, and two studies of disability in the inner city. He is past Chair of the Medical Sociology Section of the American Sociological Association and a member of the Executive Committee of the Disability Forum of the American Public Health Association. He has received the Award for the Promotion of Human Welfare and the Eliot Freidson Award for the book The Disability Business: Rehabilitation in America. He also has received a Switzer Distinguished Research Fellowship, Kellogg Fellowship, World Health Organization Fellowship, Schmidt Fellowship, New York State Supreme Court Fellowship, the Lee Founders Award from the Society for the Study of Social Problems, the Licht Award from the American Congress of Rehabilitation Medicine, and the University of Illinois at Chicago Award for Excellence in Teaching. He was a Visiting Fellow at the University of Oxford and Maison des Sciences de l'Homme, Paris. He has led scientific delegations in rehabilitation medicine to the Soviet Union and the People's Republic of China. His most recent book is The Handbook of Social Studies in Health and Medicine (2000, edited with Ray Fitzpatrick and Susan Scrimshaw).
Barbara M. Altman is Senior Research Fellow with the Agency for Healthcare Research and Quality and an Adjunct Associate Professor at the University of Maryland, Baltimore County. She is a past president of the Society for Disability Studies and served on the founding board of directors of that organization. her disability research interests focus on three areas: operationalization of disability definitions/measures in survey data; access to, financing, and use of health care services by persons with disabilities, particularly working-age persons and women with disabilities; and the impact of primary, secondary, and tertiary resources on disability outcomes. She is the author of a number of articles and book chapters on disability topics and has served as editor of special issues of Disability Studies Quarterly and Journal of Disability Policy Studies. She is coeditor of the new series, Research in Social Science and Disability.
Felicity Armstrong is Lecturer at the Department of Educational Studies, University of Sheffield, England. She is codirector of the M.Ed. in Special and Inclusive Education. Her research interests include curriculum, culture and diversity, and cross-cultural issues in policy and difference. She has recently coedited two books with Len Barton—Disability, Human Rights and Education and Inclusive Education: Policy, Contexts and Comparative Perspectives.[Page 844]
Adrienne Asch is the Henry R. Luce Professor in Biology, Ethics, and the Politics of Human Reproduction at Wellesley College. She came to Wellesley from Boston University, where she taught at the School of Social Work. From 1987 to 1990, she served as an Associate in Social Science and Policy with the New Jersey Bioethics Commission and during 1993 was a member of the Clinton Task Force on Health Care Reform. Most recently, her work has focused on the ethical, political, psychological, and social implications of human reproduction and the family. She has been involved with the disability rights movement and disability studies for 30 years and is a past president of the Society for Disability Studies.
Sharon Barnartt is Professor of Sociology at Gallaudet University. Coauthor of Deaf President Now: The 1988 Revolution at Gallaudet University (1995) and also of Contentious Politics in the Disability and Deaf Communities (forthcoming), she has also published widely in the area of socioeconomic status and disability/deafness, legal and disability policy issues, and social movements in the deaf and disability communities.
Colin Barnes is a disabled writer and activist. A committed advocate of user-led research initiatives and methodologies, he has conducted studies on a whole range of disability-related issues, including the social construction of dependence, institutional discrimination and disabled people, disabling imagery and the media, independent/integrated living, and user-led services. He has authored and coauthored several books and articles in the general area of disability studies and is founder and Director of the Disability Research Unit (DRU) in the Department of Sociology and Social Policy at the University of Leeds, England.
Len Barton is Professor in the Department of Educational Studies at the University of Sheffield, England. He is the Director of an Inclusive Education Research Centre. His main interests are in a sociopolitical approach to disability issues, cross-cultural insights and relationships on questions of disability policy and practice, and the position and perspectives of disabled people, both individually and as a collective. He is also the founder and editor of Disability and Society, the world's leading journal in the field of disability studies. He has published extensively on these issues, and his latest publication is Disability, Human Rights and Education. Cross-Cultural perspectives (coedited with F. Armstrong, 1999).
Ian Basnett is a physician and the Deputy Director of Public Health for Camden and Islington Health Authority in central London. In 1997 and 1998, he was a Harkness Fellow sponsored by the Commonwealth Fund and based at the University of California at San Francisco, where he focused on issues related to managed health care, disability, and long-term care. He retains a broad interest in issues related to health and disability policy, personal assistance, and disability advocacy. As an individual with a disability, he works on disability issues with both the national and local disability organizations. He is an honorary senior lecturer at the London School of Hygiene and Tropical Medicine and is a member of the Royal College of Physicians. He also has a background in public health.
Line Beauregard is a research assistant at the Institute of Rehabilitation of Quebec City. She is completing a Ph.D. in social work at the Laval University. Her research focuses on aging with a disability. She also studies the interactive person-environment process.
Monroe Berkowitz is Professor of Economics, Emeritus, Rutgers University; Director of Disability and Health Economics Research of the Bureau of Economic Research; and Director of Research, Rehabilitation International. He has published extensively in the area of economics of disability, with particular emphasis on work-related disability. He has authored or coauthored numerous books and journal articles, including Permanent Partial Disability and Workers' Compensation. He is the editor of the book Measuring the Efficiency of Public Programs and coauthor of The Economic Consequences of Traumatic Spinal Cord Injuryand Spinal Cord Injury: An Analysis of Medical and Social Costs. His current research interests include a [Page 845]study of the full costs of disability in a selected sample of firms, a study of mobility devices, and studies of work injuries and rehabilitation here and abroad. He has served as a consultant to various workers' compensation agencies and organizations such as the U.S. Department of Health and Human Services, U.S. Department of Education, U.S. Department of Labor, Social Security Administration, the International Labor Organization, and the World Health Organization. He is also a member of the National Academy of Arbitrators, having served as an arbitrator in management-labor disputes since 1946.
Jerome E. Bickenbach is Professor in the Department of Philosophy and Faculties of Law and Medicine at Queen's University, Kingston, Ontario, Canada. He is the author of Physical Disability and Social Policy (1993) and coeditor of Introduction to Disability (1998) and many articles in disability studies, focusing on the nature of disability and disability law and policy. His research is entirely within disability studies and more recently includes disability epidemiology, disability and health issues, the ethics and policy of summary health measures, and health law generally. Since 1995, he has been a consultant with the World Health Organization working on the revision of the ICIDH-2.
Ellen Liberti Blasiotti is Manager of the Information Dissemination and Utilization Program and Director of the Mary E. Switzer Fellowship Program at the National Institute on Disability and Rehabilitation Research (NIDRR). She is a national expert in information dissemination and utilization and has a chapter published in Knowledge: Creation, Diffusion, Utilization. She has 30 years of experience in rehabilitation research, research information dissemination and utilization, and public affairs. She has directed national information clearinghouses, a national rehabilitation research library, information services, databases, media outreach projects, and technical assistance efforts. She has served as a delegate to U.S.-Japan Common Agenda conference and has been a NIDRR Fellow to India. She is the winner of a prestigious Hammer Award from the Vice-President's National Performance Review and the Deputy Secretary's Reinvention Award. Prior to her service in helping to establish the NIHR (now NIDRR), she held various public affairs positions at the U.S. Information Agency and the U.S. Department of State.
David L. Braddock is Professor of Human Development and Public Health, Head of the Department of Disability and Human Development, and founding Director of the Institute on Disability and Human Development at the University of Illinois at Chicago. His research has focused on the comparative study of the provision and financing of services for people with developmental disabilities in the 50 American states. This work has been published in six editions as the “State of the States in Developmental Disabilities.” In addition to his work on deinstitutionalization, he has also published research on health promotion and disease prevention for persons with disabilities, compensation and turnover in residential facilities, and federal policy toward mental retardation and developmental disabilities. He was instrumental in establishing the University of Illinois at Chicago's interdisciplinary Ph.D. degree program in disability studies, the nation's first. He has received Career Research Awards from the American Association on Mental Retardation, the Association for Retarded Citizens of the United States, and the University of Illinois. He is a former president of the American Association on Mental Retardation.
Scott Campbell Brown is Educational Research Analyst in the Office of Special Education Programs, Office of Special Education and Rehabilitation Services, Department of Education. His background includes posts as a consultant to the United Nations and the International Labour Organization on disability issues and as a research scientist at Gallaudet University, where he codesigned the United Nations Disability Statistics Database.
Michael Bury is coeditor of the international journal Sociology of Health and Illness. He was educated at the University of Sussex and then at Bristol, where he did postgraduate work on mental health. In the 1970s, heworked with Philip Wood in Manchesteronsociological aspects [Page 846]of chronic illness and disability and helped to write the WHO's International Classification of Impairments, Disabilities, and Handicaps. In the early 1980s, he moved to London to work with Margot Jefferysat Bedford College and teach on the M.Sc. in Medical Sociology. With the merger of Bedford College with Royal Holloway in 1985 (still within London University), he moved his activities to the Royal Holloway site. He has been published widely in the fields of chronic illness, disability, and aging. His latest book, Health and Illness in a Changing Society, was published in 1997.
Lennard J. Davis is Professor of Disability and Human Development and Professor and Chair of the Department of English at the University of Chicago, Illinois. He is the author of two works on the novel: Factual Fictions: The Origins of the English Novel (1983, reprinted in 1996) and Resisting Novels: Fiction and Ideology (1987). He is also coeditor of Left Politics and the Literary Profession. His works on disability include Enforcing Normalcy: Disability, Deafness, and the Body (1995), which won the 1996 Gustavus Myers Center for the Study of Human Rights' annual award for the best scholarship on the subject of intolerance in North America, and The Disability Studies Reader (1996). He has also written a memoir My Sense of Silence (2000) about growing up in a deaf family and edited his parents' correspondence Shall I Say a Kiss: The Courtship Letters of a Deaf Couple, 1936–38 (1999). He was a founding member of the Modern Language Associations Committee on Disability Issues in the Profession and is an active memberof Children of Deaf Adults (CODA). His current projects are Novel Theory (2001) and Obsession: The History of Fascination and the People Who Made It a Disease.
Gerben DeJong is Director of the National Rehabilitation Hospital (NRH) Center on Health and Disability Research (formerly NRH Research Center) in Washington, D.C. In this capacity, he also serves as Director of the Center's federally funded Research and Training Center (RTC) on Managed Care & Disability. He is Professor in the Department of Family Medicine and Adjunct Professor in the Georgetown Public Policy Institute at Georgetown University. In 1984, he was a Fulbright Scholar in the Netherlands, serving with the research staff of the Social Security Council. He isthe authororcoauthor ofmore than 180 papersonhealth, income maintenance, and disability issues. He is perhaps best known for his seminal work on disability and health policy and the independent living movement. He is an ardent student of health care reform and health system change and their impact on individuals with disabilities. He has had an abiding interest in the consumer side of health markets and the ability of consumers to make informed decisions about their health care needs. Dr. DeJong is also one of the few analysts, apart from Wall Street, tracking the rapid consolidation of American postacute care through mergers and acquisitions.
Robert F. Drake is Lecturer in Social Policy at the University of Wales, Swansea, in the United Kingdom. For several years, he worked in voluntary sector management for a number of nongovernmental organizations. He also provides consultancy services to governments and major voluntary bodies on disability and equal opportunity policies, and he has published widely on both these topics. He has recently completed a review of the position of disabled people in Northern Ireland (for Pricewaterhouse-Coopers) and is currently writing a major text on the principles of social policy.
Alexandra Enders is Senior Research Associate at the Research and Training Center on Rural Rehabilitation, Rural Institute on Disabilities at the University of Montana, where she has also been Director of Training and Associate Director for Information Dissemination. For more than 25 years, she has been involved with service delivery systems and networks, public policy, funding and quality assurance issues, program development and training activities, information services, independent living program development, and technology evaluation and effectiveness studies at the Electronic Industries Foundation in Washington, D.C., the Rehabilitation Engineering Center at Children's Hospital at Stanford, and the Center for Independent Living in Berkeley, California. She has published widely, including three editions of the Assistive Technology Sourcebook. [Page 847]She is the current president of RESNA, the Rehabilitation Engineering and Assistive Technology Association of North America.
Philip M. Ferguson is Associate Professor and Senior Research Associate in the Department of Special Education and Community Resourcesatthe University of Oregon. His research focuses on the areas of family and professional interaction and support policy, social policy and history in disability studies, and qualitative research methods in disability studies and education. In addition to numerous articles and book chapters, he has published a book on the history of disability policy and coedited a popular reader in qualitative research in disability studies.
Patrick Fougeyrollas is a social anthropologist and scientific director at the University Institute of Rehabilitation of Quebec City and Associate Professor in the Department of Rehabilitation andinthe Departmentof Sociologyat Laval University. He is a founding member and president of the International Network on the Disability Creation Process; president of the Canadian Society on the Classification of Impairments, Disabilities and Handicaps; and an active member of committees related to rehabilitation, social integration, and issues related to the disability process for the World Health Organization and the Council of Europe. He is a social researcher specializing in the study of the interactive person-environment process, determining the quality of social participation of persons with organic or functional differences. He is an active advocate in the international disability movement for the exercise of human rights and equalization of opportunities for people with disabilities. With his team in Quebec, he developed the classification “Disability Creation Process,” which was innovative by its full recognition of environmental factors and clarification of personal factors from extrinsic factors in the international debate around the revision of the WHO's ICIDH. He also developed new measurement tools for measuring the quality of social participation and their environmental, physical, and social determinants.
Sally French is a lecturer in social care at the Open University, United Kingdom. She has written and edited numerous articles and books on psychosocial issues relating to health, illness, and disability. Her publications include On Equal Terms: Working with Disabled People and Physiotherapy: A Psychosocial Approach and Disability Discourse. She has a background in physiotherapy and teaching.
Glenn T. Fujiura is Associate Professor of Human Development at the Department of Disability and Human Development at the University of Illinois at Chicago. His research has focused on the fiscal structure and demography of the developmental disability service system, on family policy, and on evaluation of long-term care services. He is the principal investigator of studies on demography and economics of families and disability; the intersection of poverty, race, and disability; institutional closure; and demographic analyses of trends in disability populations. Prior to his academic career, he worked in work rehabilitation programs, schools, and long-term care residential settings. He is a 1999 National Rehabilitation Association Switzer Scholar and currently Chair of the U.S. Administration on Developmental Disabilities Multicultural Advisory Committee.
Carol J. Gill is a clinical and research psychologist specializing in health and disability. She is Assistant Professor in the Department of Disability and Human Development at the University of Illinois at Chicago (UIC), where she teaches and provides leadership in disability studies curriculum development. She also directs the department's Chicago Center for Disability Research, through which she and colleagues conduct research, training, and community service projects in the social sciences, emphasizing a disability studies approach and substantive direction by persons with disabilities at all levels. Since 1998, she has served as Executive Officer of the Society for Disability Studies. Her research interests include disability identity development, health concerns and health service experiences of women with disabilities, disability bioethical issues [Page 848]and professional training. Her conceptual and research articles have been widely published in both professional journals and in the popular disability press.
Benedicte Ingstad is Professor of Medical Anthropology at the Department of General Practice and Community Medicine, University of Oslo, Norway. She was a Visiting Fulbright Scholar at the Department of Anthropology, University of California, Berkeley (1999–2000). She is trained as a social anthropologist with fieldwork done in Greenland, Botswana, Gambia, and Norway. Her main areas of research include disability in an international and cross-cultural perspective, aging in a cross-cultural perspective, family care for dependent members, traditional healers and healing systems, AIDS in Southern Africa, and the concept of “good health” in Norway. She was born in Norway 1943 and is a widow and mother of five children, one of them severely physically and mentally handicapped.
Michael P. Kelly is Head of School and Professor of Social Sciences at the University of Greenwich, London. He is also Director of the Centre for Research in Human Sciences and Business at that university. He is a medical sociologist with particular interests in the sociology of chronic illness and surgery. His work in this field has been concerned with the effects on self and identity of illness and surgery. He has also written about coronary heart disease prevention, health promotion, labeling theory, alcoholism, and the implications of postmodern theory for medical sociology. He previously taught at the Universities of Glasgow, Dundee, Abertay, and Leicester.
Iwao Kobayashi is a lecturer in Faculty of Software and Information Science, Iwate Prefectural University in Japan. In April 1999, he worked in the General Secretariat of Special Education, Ministry of Education, Kingdom of Saudi Arabia as an expert of Japan International Cooperation Agency (JICA). His research interests include the use of information technology by and for people with disabilities.
Simi Litvak is Senior Research and Policy Analyst at the World Institute on Disability (WID), Oakland, California. She is a former director of both the Rehabilitation Research and Training Center (RRTC) on Personal Assistance Services (PAS) and of the RRTC on Independent Living and Disability Policy at WID. She has done extensive research in the area of independent living and is a nationally known expert in independent living, PAS, income supports, and health care access for people with disabilities. She has more than 35 years of experience in the disability field as an educator, researcher, policy analyst, policymaker, author, speaker, and rehabilitation professional. She served as a member of President Clinton's 1993 Health Care Reform Task Force. Her hidden disabilities result from back injury and environmental illness.
Donald J. Lollar is Chief, Disability and Health Branch, at the Centers for Disease Control and Prevention (CDC). He has spent the past 5 years helping develop the science and programs to improve the health of people with disabilities, prevent secondary conditions, and increase full participation. Prior to joining CDC, he practiced rehabilitation psychology for 25 years, working with children, adults, and families across ages and conditions. His primary scientific emphasis has been the development of instruments to measure variables such as need satisfaction, pain perception among children, and independent functioning. His clinical interests have focused emotional balance and helping coordinate services needed for individuals and their families. He is currently on the Research Advisory Committee for Special Olympics and Very Special Arts.
Geoff Mercer is Senior Lecturer in the Department of Sociology and Social Policy and a member of the Disability Research Unit, University of Leeds. He has published widely on disability theory and research, including editing (with Colin Barnes) two major collections: Exploring the Divide: Illness and Disability (1996) and Doing Disability Research (1997). He is coauthor (with Colin Barnes and Tom Shakespeare) of Exploring Disability: A Sociological Introduction[Page 849](1999). His current disability research projects include a study of centers for independent/integrated living and of people with severe aphasia.
David T. Mitchell is Associate Professor of English and Cultural Studies at Northern Michigan University. He has served as president of the Society for Disability Studies and chair of the Committee on Disability Issues in the Academy and the Disability Studies Discussion Group in the Modern Languages Association (MLA). He was also one of the founders of both of these MLA groups. He is coproducer and codirector of the award-winning video, Vital Signs: Crip Culture Talks Back. In addition, he has published numerous essays on disability studies in the humanities and was the coeditor of the anthology, The Body and Physical Difference: Discourses of Disability. He is the editor of a book series, titled Corporealities: Discourses of Disability, for the University of Michigan Press. His most recent book (coauthored with Sharon Synder) is Narrative Prosthesis: Disability and the Dependencies of Discourse (2000).
Bonnie O'Day is Senior Research Associate at Cherry Engineering and Support Services, Inc. (CESSI). She formerly served as the Director of Disability Research at the National Rehabilitation Hospital Research Center. She is the principal investigator on several research projects, including Policy Barriers for People with Long-term Mental Illness Who Want to Work. Other projects include several research and training projects in the areas of managed care, which use qualitative and quantitative methods to examine access to and quality of care for people with disabilities. She has also been appointed by President Clinton to the National Council on Disability, an advisory body to Congress and the president on disability-related issues. She has served as research associate on several projects, including From Institutions to Independence, an examination of the policy-level barriers people with disabilities face in moving from nursing homes into the community, and the strategies that independent living centers use to assist people in making this transition.
Susan L. Parish is Associate Project Director of the State of the States in Developmental Disabilities, a longitudinal research project examining state and national trends in financing and services for persons with developmental disabilities. She is a doctoral candidate in Public Health at the University of Illinois at Chicago.
Trevor R. Parmenter holds ajoint appointment as Foundation Professor of Developmental Disability in the Faculty of Medicine at the University of Sydney and Director of the Centre for Developmental Disability Studies (CDDS). Priorto his appointment at CDDS in 1997, he held the position of Professorial Fellow in the School of Education, Macquarie University and Director of the Unit for Community Integration Studies. Previous to his appointment to Macquarie University in 1974, he held teaching and administrative positions with the New South Wales Department of Education (1953–1973). Among his honors and awards are fellowships from the Australian College of Education, the American Association on Mental Retardation, and the International Association for the Scientific Study of Intellectual Disabilities. He has received distinguished international researcher awards from the American Association on Mental Retardation and the American Association of University Affiliated Programs. He also received the Distinguished Service Citation from the Australian Society for the Study of Intellectual Disability. He is presently serving a four-year term as the president of the International Association for the Scientific Study of Intellectual Disabilities. He is a member of the Division of International Special Education and Services International Liaison Network of the Council for Exceptional Children and a foundation member of the Global Applied Disability Research and Information Network on Employment & Training (GLADNET).
Bernice A. Pescosolido is Chancellors' Professor of Sociology at Indiana University and Director of the Indiana Consortium for Mental Health Services Research. Her areas of research target issues of the role of social networks in health, illness, and healing. She received an Independent Scientist Award from the National Institute of Mental Health. She has served as the chair [Page 850]of the Medical Sociology Section of the American Sociological Association and has participated in the development of research agendas on the social and behavioral sciences for the National Cancer Institute; the National Institute of Heart, Lung and Blood; and the National Institute of Mental Health. Her current projects focus on the larger public climate toward persons with mental illness, a longitudinal study of the service utilization of persons newly diagnosed with mental illness, and the role of community networks in recognizing and coping with mental health problems in Puerto Rico.
Jean-François Ravaud is a research director in public health at INSERM (Institut national de la santé et de la recherche médicale, the French National Institute of Health and Medical Research). He is active at CERMES (Centre de recherche médecine, sciences, santé et société), a research unit associated with INSERM), CNRS (Centre national de la recherche scientique, the national French Center of Scientific Research), and EHESS (École des hautes études en sciences sociales, the Institute for Advanced Studies in the Social Sciences). After studies in psychiatry, he specialized in social epidemiology and has been engaged for more than 15 years in research on the social integration of disabled persons. He is a codirector of RFRH (Réseau federatif de recherche sur le handicapé), which brings together French research teams specialized in rehabilitation, technological research, public health, and the social sciences, and he oversees the main thrust of such activity. His research has led to publications in various international journals such as Social Science and Medicine, Sociology of Health and Illness, Disability and Rehabilitation, and International Journal of Rehabilitation Research.
Violet Rutkowski-Kmitta is a research specialist in the Department of Disability and Human Development at the University of Illinois at Chicago. She is a recent graduate from Saint Louis University School of Public Health in Saint Louis, Missouri with a concentration in epidemiology. She has been involved in research on health-related quality-of-life measures and with measurement development projects involving the International Classification of Impairments, Disabilities, and Handicap (ICIDH-2). She is working with Glenn Fujiura, conducting disability epidemiological research using state public health surveillance systems.
Kay Schriner is Research Professor in the Department of Political Science and Research Fellow in the Fulbright Institute of International Relations at the University of Arkansas. She is the founding editor of the Journal of Disability Policy Studies. Her research interests are in disability politics and policies both domestically and internationally.
Richard Scotch is Professor of Sociology and Political Economy at the University of Texas at Dallas. He is the author of From Good Will to Civil Rights: Transforming Federal Disability Policy and coauthor of the forthcoming Contentious Politics in the Disability and Deaf Communities. He has published numerous articles and monographs on the conceptual basis for social policy reform and social movements in disability, health care, education, and human services.
Katherine D. Seelman was named by President Clinton in 1994 as the Director of the National Institute of Disability and Rehabilitation Research (NIDRR). She chairs the Interagency Committee on Disability Research, which promotes coordination and cooperation among federal agencies supporting rehabilitation research. During her tenure as Director of NIDRR, she has advanced scientific endeavor in many areas, especially in applications of rehabilitation technology toadvance the independenceofpeople with disabilities. Dr. Seelman isamemberof a number of National Science Foundation (NSF) and National InstitutesofHealth (NIH) committees, including the National Center for Medical Rehabilitation Research (NCMRR). She is co-chair of the U.S.-Japan Common Agenda steering committee in educational and assistive technology and was co-chair of the Research Committee for the 1996 Paralympic Games in Atlanta. Dr. Seelman, who is hard of hearing, has held leadership positions at the National Council on Disability, the Administration on Developmental Disabilities, and the Massachusetts Commission for the Deaf and Hard of Hearing. During her career, she has received numerous awards, including [Page 851]an honorary fellow Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), a National Science Foundation Assistantship, and a distinguished Switzer Fellowship.
Tom Shakespeare works to develop research and public debate on the social aspect of the new genetics at the PEALS Research Institute, Newcastle. He has been active in the U.K. disability movement since 1986 and has been involved with disability studies since 1989. His publications include The Sexual Politics of Disability (1996), Exploring Disability (1999), and The Disability Reader (1998). His most recent research has been with disabled children and on disabled people's views of the new genetics.
Sharon L. Snyder is Assistant Professor in Film Studies and Literature in Northern Michigan University. Most recently, she coedited Enabling the Humanities: A Sourcebook in Disability Studies. She is a series editor of Corporealities: Discourses of Disability, coauthor of Narrative Prosthesis: Disability and the Dependencies of Discourse, coeditor of The Body and Physical Difference: Discourses of Disability, and a founding member of the Modern Language Asssociation's Committee on Disability Issues. Her film, Vital Signs: Crip Culture Talks Back, has received many awards, including Grand Prize from Rehabilitation International.
Henri-Jacques Stiker is Director of Research at the Laboratoire Histoire et Civilisations des Societes Occidentales at the Université Denis Diderot in Paris. After a doctoral dissertation in philosophy and appointment to a research position in semiotics at EHESS, he specialized in the historical anthropology of disability. He has written several books and numerous articles, which have resulted in his being invited to lecture at a number of French, American, and Canadian universities, as well as to join the editorial boards of journals and the science councils of several institutions. He is the president of an international learned society devoted to the history of disability (ALTER). One of his now standard works, Corps infirmes et societies (1982, reprinted 1997) appeared in English in late 1999 under the title A History of Disability. He is also the author of Culture brisée, culture a naitre (1979) and of chapters in works such as Handicap vecu et evalue (1987), Fragments pour une histoire, notions et acteurs (1996), and L'exclusion l'etat des savoirs (1996).
John Swain is a principal lecturer in research and a reader in Disability Studies at the University of Northumbria at Newcastle, United Kingdom. He has researched and published widelyin the field of disability studies. He has a background in psychology and teaching young people with special educational needs. With Sally French, he coedited Therapy and Learning Difficulties: Advocacy, Participation, and Partnership. He has worked as a consultant on a number of disability studies courses at the Open University, United Kingdom, and is coeditor of a course setbook, Disabling Barriers—Enabling Environments.
Bryan S. Turner is Professor of Sociology at the University of Cambridge, England. He has held professorial chairs in Australia, Britain, and the Netherlands, and he was the Morris Ginsberg Fellow at the London School of Economics (1981) and an Alexander von Humboldt Professorial Fellow at Bielefeld University, Germany (1986–1987). He is founding coeditor of the journal Body & Society, founding editor of Citizenship Studies, and founding coeditor of the Journal of Classical Sociology. His current research interests include (1) voluntary associations, the privatization of the welfare state, and the remaking of civil society and (2) the culture and politics of postwar generations. He has published extensively in medical sociology, the sociology of religion, and political sociology. His recent publications include The Blackwell Companion to Social Theory (1999), The Talcott Parsons Reader (1999), and Classical Sociology (1999).
David Wasserman is a research scholar at the Institute for Philosophy and Public Policy in the University of Maryland's School of Public Affairs. He has written about the moral underpinnings of criminal law and legal practice, the concept of discrimination, and issues in procedural [Page 852]and distributive justice. His present research focuses on ethical and policy issues in disability, health care, reproduction, and genetic technology. In addition to numerous articles and book chapters, he has published A Sword for the Convicted: Representing Indigent Defendants on Appeal (1990). He has coauthored Disability, Difference, Discrimination with Anita Silvers and Mary Mahowald (1998) and coedited Genetics and Criminal Behavior: Methods, Meanings, and Morals with Robert Wachbroit (forthcoming).
Nick Watson is a lecturer in the sociology of health and illness in the Department of Nursing Studies, University of Edinburgh. He has published research on a wide range of disability issues, and his most recent work has involved research with disabled children. He is coeditor of two forthcoming collections on the sociology of the body (Organising Bodies: Policy, Institutions and Work and Reframing the Body). He is active in the disabled people's movement and is convenor of Access Ability, Lothian.
John D. Westbrook is Manager of the Special Education and Rehabilitation Services Program at the Southwest Educational Development Laboratory in Austin, Texas. He is also director of the National Center for the Dissemination of Disability Research, funded by a grant from the National Institute on Disability and Rehabilitation Research in the U.S. Department of Education. He has written numerous, articles, reports, monographs, guides, articles, and chapters in the knowledge dissemination and utilization area. He has directed a variety of federally funded projects in the knowledge development and dissemination areas focusing on wide-ranging issues surrounding disability, vocational rehabilitation, special education, and research. He also has extensive experience in the provision of technical assistance and training services at the state, regional, and national levels; he has facilitated numerous technical assistance brokerages to federal grantees, disability consumer groups, and service provider agencies and organizations. He was selected as a Mary E. Switzer Scholar in 1998 by the National Rehabilitation Association. He has had a variety of employment experiences, including special education teacher and supervisor, state education agency consultant, staff development specialist, continuing medical education specialist, and university student teacher trainer. He has also held a variety of public service posts, including service on the board of a community-based independent living center and state committee planning for classroom computer capacity building.
Gareth Williams is Research Professor in the School of Social Sciences at Cardiff University in Wales and is the School's Director of Research. He was previously Professor of Sociology at the University of Salford, England. He has published widely in academic and professional journals and is coauthor and coeditor of a number of books, including Researching the People's Health (1994), Challenging Medicine (1994), Markets and Networks (1996), Understanding Rheumatoid Arthritis (1996), and Contracting for Health (1997). His published work is mainly in the areas of disability and chronic illness, lay and expert knowledge, and public health and health policy. He is currently one of the principal researchers on a study of inequalities in health in England, funded by the Economic and Social Research Council as part of its Health Inequalities Programme.