Ethics, Law and Policy
Publication Year: 2012
This volume in The SAGE Reference Series on Disability explores ethical, legal, and policy issues of people with disabilities, and is one of eight volumes in the cross-disciplinary and issues-based series, which examines topics central to the lives of individuals with disabilities and their families. With a balance of history, theory, research, and application, specialistsset out the findings and implications of research and practice for others whose current or future work involves the care and/or study of those with disabilities, as well as for the disabled themselves. The presentational style (concise and engaging) emphasizes accessibility. Taken individually, each volume sets out the fundamentals of the topic it addresses, accompanied by compiled data and statistics, recommended further readings, a guide to organizations and associations, and other ...
- Front Matter
- Back Matter
- Subject Index
- Chapter 1: Introduction, Background, and History
- Chapter 2: Current Issues, Controversies, and Solutions
- Chapter 3: Chronology of Critical Events
- Chapter 4: Biographies of Key Contributors in the Field
- Chapter 5: Annotated Data, Statistics, Tables, and Graphs
- Chapter 6: Annotated List of Organizations and Associations
- Chapter 7: Selected Print and Electronic Resources
The SAGE Reference Series on Disability: Key Issues and Future Directions[Page ii]
Series Editor: Gary L. Albrecht
Arts and Humanities, by Brenda Jo Brueggemann
Assistive Technology and Science, by Cathy Bodine
Disability Through the Life Course, by Tamar Heller and Sarah Parker Harris
Education, by Cheryl Hanley-Maxwell and Lana Collet-Klingenberg
Employment and Work, by Susanne M. Bruyère and Linda Barrington
Ethics, Law, and Policy, by Jerome E. Bickenbach
Health and Medicine, by Ross M. Mullner
Rehabilitation Interventions, by Margaret A. Turk and Nancy R. Mudrick[Page iii]
Copyright © 2012 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.
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Library of Congress Cataloging-in-Publication Data
Bickenbach, Jerome Edmund. Ethics, law, and policy/Jerome E. Bickenbach.
p. cm.—(The SAGE reference series on disability: key issues and future directions)
Includes bibliographical references and index.
ISBN 978-1-4129-8747-9 (cloth: alk. paper)
1. People with disabilities. 2. People with disabilities—Legal status, laws, etc. 3. People with disabilities—Government policy. 4. Ethics. I. Title.
12 13 14 15 16 10 9 8 7 6 5 4 3 2 1
Publisher: Rolf A. Janke
Acquisitions Editor: Jim Brace-Thompson
Assistant to the Publisher: Michele Thompson
Project Development, Editing, & Management: Kevin Hillstrom, Laurie Collier Hillstrom
Production Editor: Jane Haenel
Reference Systems Manager: Leticia Gutierrez
Reference Systems Coordinator: Laura Notton
Typesetter: C&M Digitals (P) Ltd.
Proofreader: Ellen Howard
Indexer: Terri Corry
Cover Designer: Gail Buschman
Marketing Manager: Kristi Ward
I dedicate this book to Alarcos Cieza, colleague and friend.
Series Introduction[Page vii]
The SAGE Reference Series on Disability appears at a time when global attention is being focused on disability at all levels of society. Researchers, service providers, and policymakers are concerned with the prevalence, experience, meanings, and costs of disability because of the growing impact of disability on individuals and their families and subsequent increased demand for services (Banta & de Wit, 2008; Martin, Freedman, Schoeni, & Andreski, 2010; Mont, 2007; Whitaker, 2010). For their part, disabled people and their families are keenly interested in taking a more proactive stance in recognizing and dealing with disability in their lives (Charlton, 1998; Iezzoni & O'Day, 2006). As a result, there is burgeoning literature, heightened Web activity, myriad Internet information and discussion groups, and new policy proposals and programs designed to produce evidence and disseminate information so that people with disabilities may be informed and live more independently (see, for example, the World Institute of Disability Web site at http://www.wid.org, the Center for International Rehabilitation Research Information and Exchange Web site at http://cirrie.buffalo.edu, and the Web portal to caregiver support groups at http://www.caregiver.com/regionalresources/index.htm).
Disability is recognized as a critical medical and social problem in current society, central to the discussions of health care and social welfare policies taking place around the world. The prominence of these disability issues is highlighted by the attention given to them by the most respected national and international organizations. The World Report on Disability (2011), co-sponsored by the World Health Organization (WHO) and the World Bank and based on an analysis of surveys from over 100 countries, estimates that 15% of the world's population (more than 1 billion people) currently experiences disability. This is the best prevalence estimate available today and indicates a marked increase over previous epidemiological [Page viii]calculations. Based on this work, the British medical journal Lancet dedicated an entire issue (November 28, 2009) to disability, focusing attention on the salience of the problem for health care systems worldwide. In addition, the WHO has developed community-based rehabilitation principles and strategies which are applicable to communities of diverse cultures and at all levels of development (WHO, 2010). The World Bank is concerned because of the link between disability and poverty (World Bank, 2004). Disability, in their view, could be a major impediment to economic development, particularly in emerging economies.
Efforts to address the problem of disability also have legal and human rights implications. Being disabled has historically led to discrimination, stigma, and dependency, which diminish an individual's full rights to citizenship and equality (European Disability Forum, 2003). In response to these concerns, the United Nations Convention on the Rights of Persons with Disabilities (2008) and the European Union Disability Strategy embodying the Charter of Fundamental Rights (2000) were passed to affirm that disabled people have the right to acquire and change nationalities, cannot be deprived of their ability to exercise liberty, have freedom of movement, are free to leave any country including their own, are not deprived of the right to enter their own country, and have access to the welfare and benefits afforded to any citizen of their country. As of March 31, 2010, 144 nations—including the United States, China, India, and Russia—had signed the U.N. Convention, and the European Disability Strategy had been ratified by all members of the European Community. These international agreements supplement and elaborate disability rights legislation such as the Americans with Disabilities Act of 1990 and its amendments, the U.K. Disability Discrimination Act of 1995, and the Disabled Person's Fundamental Law of Japan, revised in 1993.
In the United States, the Institute of Medicine of the National Academy of Sciences has persistently focused attention on the medical, public health, and social policy aspects of disability in a broad-ranging series of reports: Disability in America (1991), Enabling America (1997), The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs, (2002), The Future of Disability in America (2007), and Improving the Presumptive Disability Decision-Making Process for Veterans (2008). The Centers for Disease Control have a long-standing interest in diabetes and obesity because of their effects on morbidity, mortality, and disability. Current data show that the incidence and prevalence of obesity is rising across all age groups in the United States, that obesity is related to diabetes, which [Page ix]is also on the rise, and that both, taken together, increase the likelihood of experiencing disability (Bleich et al., in press; Gill et al., 2010). People with diabetes also are likely to have comorbid depression, which increases their chances of functional disability (Egede, 2004).
Depression and other types of mental illness—like anxiety disorders, alcohol and drug dependence, and impulse-control disorders—are more prevalent than previously thought and often result in disability (Kessler & Wang, 2008). The prevalence of mental disorders in the United States is high, with about half of the population meeting criteria (as measured by the Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV) for one more disorders in their lifetimes, and more than one-quarter of the population meeting criteria for a disorder in any single year. The more severe mental disorders are strongly associated with high comorbidity, resulting in disability.
Major American foundations with significant health portfolios have also turned their attention to disability. The Bill and Melinda Gates Foundation has directed considerable resources to eliminate disability-causing parasitic and communicable diseases such as malaria, elephantiasis, and river blindness. These efforts are designed to prevent and control disability-causing conditions in the developing world that inhibit personal independence and economic development. The Robert Wood Johnson Foundation has a longstanding program on self-determination for people with developmental disabilities in the United States aimed at increasing their ability to participate fully in society, and the Hogg Foundation is dedicated to improving mental health awareness and services. Taken in concert, these activities underscore the recognized importance of disability in the present world.Disability Concepts, Models, and Theories
There is an immense literature on disability concepts, models, and theories. An in-depth look at these issues and controversies can be found in the Handbook of Disability Studies (Albrecht, Seelman, & Bury, 2001), in the Encyclopedia of Disability (Albrecht, 2006), and in “The Sociology of Disability: Historical Foundations and Future Directions” (Albrecht, 2010). For the purposes of this reference series, it is useful to know that the World Health Organization, in the International Classification of Functioning, Disability and Health (ICF), defines disability as “an umbrella term for impairments, activity limitations or participation restrictions” (WHO, 2001, p. 3). ICF [Page x]also lists environmental factors that interact with all these constructs. Further, the WHO defines impairments as “problems in body function or structure such as significant deviation or loss;” activity limitations as “difficulties an individual may have in executing activities;” participation as “involvement in a life situation;” and environmental factors as those components of “the physical, social and attitudinal environment in which people live and conduct their lives” (WHO, 2001, p. 10). The U.N. Convention on the Rights of Persons with Disabilities, in turn, defines disability as including “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” In the introduction to the Lancet special issue on disability, Officer and Groce (2009) conclude that “both the ICF and the Convention view disability as the outcome of complex interactions between health conditions and features of an individual's physical, social, and attitudinal environment that hinder their full and effective participation in society” (p. 1795). Hence, disability scholars and activists alike are concerned with breaking down physical, environmental, economic, and social barriers so that disabled people can live independently and participate as fully as possible in society.Types of Disability
Interest in disability by medical practitioners has traditionally been condition specific (such as spinal cord injury or disabilities due to heart disease), reflecting the medical model approach to training and disease taxonomies. Similarly, disabled people and their families are often most concerned about their particular conditions and how best to deal with them. The SAGE Reference Series on Disability recognizes that there are a broad range of disabilities that can be generally conceived of as falling in the categories of physical, mental, intellectual, and sensory disabilities. In practice, disabled persons may have more than one disability and are often difficult to place in one disability category. For instance, a spinal-cord injured individual might experience depression, and a person with multiple sclerosis may simultaneously deal with physical and sensory disabilities. It is also important to note that disabilities are dynamic. People do experience different rates of onset, progression, remission, and even transition from being disabled at one point in time, to not being disabled at another, to being disabled again. Examples of this change in disability status include disability due to bouts of arthritis, Guillain-Barré Syndrome, and postpartum depression.[Page xi]Disability Language
The symbols and language used to represent disability have sparked contentious debates over the years. In the Handbook of Disability Studies (Albrecht, Seelman, & Bury 2001) and the Encyclopedia of Disability (Albrecht, 2006), authors from different countries were encouraged to use the terms and language of their cultures, but to explain them when necessary. In the present volumes, authors may use “people with disabilities” or “disabled people” to refer to individuals experiencing disability. Scholars in the United States have preferred “people with disabilities” (people-first language), while those in the United Kingdom, Canada, and Australia generally use “disabled people.” In languages other than English, scholars typically use some form of the “disabled people” idiom. The U.S. version emphasizes American exceptionalism and the individual, whereas “disabled people” highlights the group and their minority status or state of being different. In my own writing, I have chosen “disabled people” because it stresses human diversity and variation.
In a recent discussion of this issue, DePoy and Gilson (2010) “suggest that maintaining debate and argument on what language is most correct derails a larger and more profound needed change, that of equalizing resources, valuation, and respect. Moreover, … locating disability ‘with a person’ reifies its embodiment and flies in the very face of the social model that person-first language is purported to espouse. … We have not heard anyone suggest that beauty, kindness, or even unkindness be located after personhood.” While the debate is not likely over, we state why we use the language that we do.Organization of the Series
These issues were important in conceiving of and organizing the SAGE Reference Series on Disability. Instead of developing the series around specific disabilities resulting from Parkinson's disease or bi-polar disorder, or according to the larger categories of physical, mental, intellectual, and sensory disabilities, we decided to concentrate on the major topics that confront anyone interested in or experiencing disability. Thus, the series consists of eight volumes constructed around the following topics:
- Arts and Humanities
- Assistive Technology and Science
- Disability Through the Life Course [Page xii]
- Employment and Work
- Ethics, Law, and Policy
- Health and Medicine
- Rehabilitation Interventions
To provide structure, we chose to use a similar organization for each volume. Therefore, each volume contains the following elements:
About the Editors
Chapter 1. Introduction, Background, and History
Chapter 2. Current Issues, Controversies, and Solutions
Chapter 3. Chronology of Critical Events
Chapter 4. Biographies of Key Contributors in the Field
Chapter 5. Annotated Data, Statistics, Tables, and Graphs
Chapter 6. Annotated List of Organizations and Associations
Chapter 7. Selected Print and Electronic Resources
Glossary of Key Terms
The eight-volume SAGE Reference Series on Disability targets an audience of undergraduate students and general readers that uses both academic and public libraries. However, the content and depth of the series will also make it attractive to graduate students, researchers, and policymakers. The series has been edited to have a consistent format and accessible style. The focus in each volume is on providing lay-friendly overviews of broad issues and guideposts for further research and exploration.
The series is innovative in that it will be published and marketed worldwide, with each volume available in electronic format soon after it appears in print. The print version consists of eight bound volumes. The electronic version is available through the SAGE Reference Online platform, which hosts 200 handbooks and encyclopedias across the social [Page xiii]sciences, including the Handbook of Disability Studies and the Encyclopedia of Disability. With access to this platform through college, university, and public libraries, students, the lay public, and scholars can search these interrelated disability and social science sources from their computers or handheld and smart phone devices. The movement to an electronic platform presages the cloud computing revolution coming upon us. Cloud computing “refers to ‘everything’ a user may reach via the Internet, including services, storage, applications and people” (Hoehl & Sieh, 2010). According to Ray Ozzie (2010), recently Microsoft's chief architect, “We're moving toward a world of (1) cloud-based continuous services that connect us all and do our bidding, and (2) appliance-like connected devices enabling us to interact with those cloud-based services.” Literally, information will be available at consumers' fingertips. Given the ample links to other resources in emerging databases, they can pursue any topic of interest in detail. This resource builds on the massive efforts to make information available to decision makers in real time, such as computerizing health and hospital records so that the diagnosis and treatment of chronic diseases and disabilities can be better managed (Celler, Lovell, & Basilakis, 2003). The SAGE Reference Series on Disability provides Internet and Web site addresses which lead the user into a world of social networks clustered around disability in general and specific conditions and issues. Entering and engaging with social networks revolving around health and disability promises to help individuals make more informed decisions and provide support in times of need (Smith & Christakis, 2008). The SAGE Reference Online platform will also be configured and updated to make it increasingly accessible to disabled people.
The SAGE Reference Series on Disability provides an extensive index for each volume. Through its placement on the SAGE Reference Online platform, the series will be fully searchable and cross-referenced, will allow keyword searching, and will be connected to the Handbook of Disability Studies and the Encyclopedia of Disability.
The authors of the volumes have taken considerable effort to vet the references, data, and resources for accuracy and credibility. The multiple Web sites for current data, information, government and United Nations documents, research findings, expert recommendations, self-help, discussion groups, and social policy are particularly useful, as they are being continuously updated. Examples of current and forthcoming data [Page xiv]are the results and analysis of the findings of the U.S. 2010 Census, the ongoing reports of the Centers for Disease Control on disability, the World Health Organization's World Report on Disability and its updates, the World Bank reports on disability, poverty, and development, and reports from major foundations like Robert Wood Johnson, Bill and Melinda Gates, Ford, and Hogg. In terms of clinical outcomes, the evaluation of cost-effective interventions, management of disability, and programs that work, enormous attention is being given to evidence-based outcomes (Brownson, Fielding, & Maylahn, 2009; Marcus et al., 2006; Wolinsky et al., 2007) and comparative effectiveness research (Etheredge, 2010; Inglehart, 2010). Such data force a re-examination of policymakers' arguments. For example, there is mounting evidence that demonstrates the beneficial effects of exercise on preventing disability and enhancing function (Marcus et al., 2006). Recent studies also show that some health care reform initiatives may negatively affect disabled people's access to and costs of health care (Burns, Shaw, & Smith, 2010). Furthermore, the seemingly inexorable rise in health care spending may not be correlated with desirable health outcomes (Rothberg et al., 2010). In this environment, valid data are the currency of the discussion (Andersen, Lollar, & Meyers, 2000). The authors' hopes are that this reference series will encourage students and the lay public to base their discussions and decisions on valid outcome data. Such an approach tempers the influence of ideologies surrounding health care and misconceptions about disabled people, their lives and experiences.
SAGE Publications has made considerable effort to make these volumes accessible to disabled people in the printed book version and in the electronic platform format. In turn, SAGE and other publishers and vendors like Amazon are incorporating greater flexibility in the user interface to improve functionality to a broad range of users, such as disabled people. These efforts are important for disabled people as universities, governments, and health service delivery organizations are moving toward a paperless environment.
In the spirit of informed discussion and transparency, may this reference series encourage people from many different walks of life to become knowledgeable and engaged in the disability world. As a consequence, social policies should become better informed and individuals and families should be able to make better decisions regarding the experience of disability in their lives.[Page xv]Acknowledgments
I would like to recognize the vision of Rolf Janke in developing SAGE Publications' presence in the disability field, as represented by the Handbook of Disability Studies (2001), the five-volume Encyclopedia of Disability (2006), and now the eight-volume SAGE Reference Series on Disability. These products have helped advance the field and have made critical work accessible to scholars, students, and the general public through books and now the SAGE Reference Online platform. Jim Brace-Thompson at SAGE handled the signing of contracts and kept this complex project coordinated and moving on time. Kevin Hillstrom and Laurie Collier Hillstrom at Northern Lights Writers Group were intrepid in taking the composite pieces of this project and polishing and editing them into a coherent whole that is approachable, consistent in style and form, and rich in content. The authors of the eight volumes—Linda Barrington, Jerome Bickenbach, Cathy Bodine, Brenda Brueggemann, Susanne Bruyère, Lana Collet-Klingberg, Cheryl Hanley-Maxwell, Sarah Parker Harris, Tamar Heller, Nancy Mudrick, Ross Mullner, and Peggy Turk—are to be commended for their enthusiasm, creativity, and fortitude in delivering high-quality volumes on a tight deadline. I was fortunate to work with such accomplished scholars.
Discussions with Barbara Altman, Colin Barnes, Catherine Barral, Len Barton, Isabelle Baszanger, Peter Blanck, Mary Boulton, David Braddock, Richard Burkhauser, Mike Bury, Ann Caldwell, Lennard Davis, Patrick Devlieger, Ray Fitzpatrick, Lawrence Frey, Carol Gill, Tamar Heller, Gary Kielhofner, Soewarta Kosen, Jo Lebeer, Mitch Loeb, Don Lollar, Paul Longmore, Ros Madden, Maria Martinho, Dennis Mathews, Sophie Mitra, Daniel Mont, Alana Officer, Randall Parker, David Pfeiffer, Jean-François Raveau, James Rimmer, Ed Roberts, Jean-Marie Robine, Joan Rogers, Richard Scotch, Kate Seelman, Tom Shakespeare, Sandor Sipos, Henri-Jacques Stiker, Edna Szymanski, Jutta Traviranus, Bryan Turner, Greg Vanderheiden, Isabelle Ville, Larry Voss, Ann Waldschmidt, and Irving Kenneth Zola over the years contributed to the content, logic, and structure of the series. They also were a wonderful source of suggestions for authors.
I would also like to acknowledge the hospitality and support of the Belgian Academy of Science and the Arts, the University of Leuven, Nuffield College, the University of Oxford, the Fondation Maison des [Page xvi]Sciences de l'Homme, Paris, and the Department of Disability and Human Development at the University of Illinois at Chicago, who provided the time and environments to conceive of and develop the project. While none of these people or institutions is responsible for any deficiencies in the work, they all helped enormously in making it better.University of Illinois at Chicago University of Leuven Belgian Academy of Science and ArtsReferencesAlbrechtG. L. (Ed.). (2006). Encyclopedia of disability (5 vols.). Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129505102010). The sociology of disability: Historical foundations and future directions. In C.Bird, A.Fremont, S.Timmermans, & P.Conrad (Eds.), Handbook of medical sociology ((6th ed.). 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Disability ethics, law, and policy covers a vast territory that can only be navigated if the relationships between these three social phenomena are made clear. The best approach is to view ethics as fundamental—both in the sense that it has a direct impact on people's lives and because, conceptually, ethics provides the normative foundations for law and policy. More concretely, controversial and high-profile legal cases have, in often very powerful and personal terms, explored our ethical intuitions about, for example, the moral worth of a life with impairments. Furthermore, all policy is embedded in social values like equality, freedom, and dignity that define who we are as people. Policies and programs for people with disabilities are invariably implemented and enforced by means of laws and regulations, while legal pronouncements by the Supreme Court sometimes require legislators to rethink, or abandon, policies and programs. The interrelationships between ethics, law, and policy, in other words, are complex and often difficult to pin down.
But there is a prior question: What is the difference between disability ethics and just plain ethics, and how does disability law and policy differ from law and policy? Since people with disabilities are people, all aspects of ethics, law, and policy concern them. Moreover, are we not compounding the injustice of treating people with disabilities as “different” and “non-normal,” people who require “special treatment,” just by talking this way? On the other hand, unless laws and policies are tailored specifically to the circumstances of persons with disabilities, their important needs and accommodations may well be ignored. After all, we know that treating people the same is not always treating them equally.
This tension between “universal” and “targeted” law and policy is a theme that runs through this volume. As is the question of what the ethical value of equality demands of us in practice: Are protections against [Page xx]discrimination enough, or is the state required to empower people with disabilities with positive programs and entitlements? Another theme is the key political question of whether laws and policies for the benefit of persons with disabilities are best served by state action alone, or whether a partnership between the public and the private sectors would be more effective, and more efficient. But underlying all of these tensions and controversies is perhaps the most unlikely controversy of all: What is disability?
This book will offer a tour of the major tensions, contradictions, and ongoing controversies found in ethics, law, and policy as these domains apply to persons with disabilities, as well as provide a brief history of law and policy that, I hope, will illuminate how these tensions came about. Since this is a book on disability ethics, law, and policy—rather than, say, ethics, law, and policy in the employment sector—the coverage is necessarily selective. The plan is always to move from the general—typically where the underlying ethical questions reside—to the specific and concrete in terms of actual laws and policies. And the aim is to be selective, but representative, of which policies and laws to highlight. It should come as no surprise that the Americans with Disabilities Act of 1990 (ADA), its history, impact, and future prospects, will dominate the landscape. But however important to the disability community the ADA is—as a symbol and triumph of advocacy—most of the law and policy that affects the day-to-day lives of persons with disabilities lies in other domains: education and employment policy, including vocational rehabilitation, access to health care, income maintenance, Social Security and other pensions, assistive technology and personal assistance services, tax policy, housing, and transportation policy. These are the policies and programs of everyday life.
We begin in Chapter 1 by mapping out the territory of ethics, law, and policy, both in general and for persons with disabilities. This leads us to enter the confusing world of conflicting “models of disability” and explore how these models, both historically and conceptually, have been at the heart of many of the tensions in disability ethics, law, and policy. Setting the stage for the next chapter, we outline some of the enduring themes of disability policy and law—the fault lines that have generated, and continue to shape, the debates about the objectives of disability policy and the means available for achieving these objectives. We then turn briefly to disability ethics and review the troubled relationship between bioethics and the disability community, and recent attempts to join forces. We finish the chapter with a history of disability law and policy in the [Page xxi]Anglo-American tradition, from roughly the English Poor Law of 1601 to President Barack Obama's signing of the United Nations Convention on the Rights of Persons with Disabilities in 2009.
Chapter 2 tackles the central debates in disability law and policy, organized in terms of five basic controversies: What is disability? Is the antidiscrimination strategy enough to achieve equality? What is the “human rights approach”? What should be the balance between the public and the private sectors? and Should policy be mainstream or targeted? Each controversy is explained and then made concrete in terms of specific policy areas and laws in which the controversy is particularly troublesome. Then potential solutions in terms of best practices are offered, with a glance at the future and prospects for success. In the case of disability ethics, the controversies are more practical and specific, involving the moral worth of the life with impairments, the importance of autonomy and practical challenges to it, beginning-of-life and end-of-life questions (prenatal testing and abortion, euthanasia and physician-assisted suicide), and questions of distributive justice in the allocation of health care and other scarce resources.
Chapters 3 and 4 supplement the historical background of this book in two ways. First, Chapter 3 provides a short chronology of events relevant to the domains of disability ethics, law, and policy. The chronology for disability ethics is given in terms of the legal cases that raised the profile of ethical issues, and disability law and policy is dated by appropriate events such as passage or signing into effect of laws, implementation of policies, and amendments or other changes in programming. Second, Chapter 4 provides biographies, with suggestions for further reading, of individuals who have contributed greatly to disability ethics, law, and policy. These individuals are often the heroes of the disability rights movement—Frank Bowe, Marca Bristo, Robert Burgdorf Jr., Justin Dart, Gunnar Dybwad, Lex Frieden, Harlan Hahn, Judy Heumann, Ed Roberts, and Irving Zola—but they also include academics, politicians, and others who may be less known but have been noteworthy, and often groundbreaking, leaders in our understanding of disability ethics, law, and policy.
In Chapter 5 Dr. Bruno Trezzini and I present a representative sample of data and statistics relevant to law and policy, as well as both a general discussion of problems with disability data—including the most basic information about prevalence and incidence—and a description of data sources. The United States is blessed with some of the best and most reliable disability data in the world, and anyone wishing to look deeper into [Page xxii]the factual basis for the debates and controversies surveyed in this book has the benefit of several electronic and paper sources of pertinent data at her or his fingertips.
Chapters 6 and 7, compiled by my colleagues Nandini Devi, Nicole Emmenegger, and Barbara Phillips, round out the essential tools of a useful resource for further research: a listing and description of the governmental and non-governmental organizations of and for persons with disabilities at the national, state, and international levels (Chapter 6); and an annotated list of print and electronic resources representing historically significant, original and influential, academic and non-academic literature, databases, and other Web-based resources that provide the basis for a thorough, and ongoing, understanding of disability ethics, law, and policy (Chapter 7).
Because of the political activism of the disability rights community, and the realization that at the end of the day all political triumphs are ephemeral unless they are transformed into law and policy, the recent history of people with disabilities, in the United States and around the globe, has been primarily written in the language of laws and policies. Though ethics, by its nature, is perennial and not the product of specific individuals or social movements, the ethical issues relevant to persons with disabilities that are debated both in the public arena and by disability scholars have been raised as the result of the efforts of individual persons with disabilities and their organizations. Disability ethics, law, and policy, in short, owes much to the disability rights movement.
About the Author
About the Series Editor[Page xxv]
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and Human Development at the University of Illinois at Chicago. After receiving his Ph.D. from Emory University, he has served on the faculties of Emory University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management, and the University of Illinois at Chicago (UIC) in the School of Public Health and in the Department of Disability and Human Development. Since retiring from the UIC in 2005, he has divided his time between Europe and the United States, working in Brussels, Belgium, and Boulder, Colorado. He has served as a Scholar in Residence at the Maison des Sciences de l'Homme (MSH) in Paris, a visiting Fellow at Nuffield College, the University of Oxford, and a Fellow in Residence at the Royal Flemish Academy of Science and Arts, Brussels.
His research has focused on how adults acknowledge, interpret, and respond to unanticipated life events, such as disability onset. His work, supported by over $25 million of funding, has resulted in 16 books and over 140 articles and book chapters. He is currently working on a longitudinal study of disabled Iranian, Moroccan, Turkish, Jewish, and Congolese immigrants to Belgium. Another current project involves working with an international team on “Disability: A Global Picture,” Chapter 2 of the World Report on Disability, co-sponsored by the World Health Organization and the World Bank, to be published in 2011.
He is past Chair of the Medical Sociology Section of the American Sociological Association, a past member of the Executive Committee of the [Page xxvi]Disability Forum of the American Public Health Association, an early member of the Society for Disability Studies, and an elected member of the Society for Research in Rehabilitation (UK). 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, Schmidt Fellowship, New York State Supreme Court Fellowship, Kellogg Fellowship, National Library of Medicine Fellowship, World Health Organization Fellowship, the Lee Founders Award from the Society for the Study of Social Problems, the Licht Award from the American Congress of Rehabilitation Medicine, the University of Illinois at Chicago Award for Excellence in Teaching, and has been elected Fellow of the American Association for the Advancement of Science (AAAS). He has led scientific delegations in rehabilitation medicine to the Soviet Union and the People's Republic of China and served on study sections, grant review panels, and strategic planning committees on disability in Australia, Canada, the European Community, France, Ireland, Japan, Poland, Sweden, South Africa, the United Kingdom, the United States, and the World Health Organization, Geneva. His most recent books are The Handbook of Social Studies in Health and Medicine, edited with Ray Fitzpatrick and Susan Scrimshaw (SAGE, 2000), the Handbook of Disability Studies, edited with Katherine D. Seelman and Michael Bury (SAGE, 2001), and the five-volume Encyclopedia of Disability (SAGE, 2006)
Glossary of Key Terms[Page 311]
ADASee Americans with Disabilities Act of 1990
ADAAASee Americans with Disabilities Act Amendments Act of 2008
Alexander v. Choate This 1984 U.S. Supreme Court decision created a legal distinction between reasonable accommodation, which is designed to remove present barriers, and affirmative action, which is designed to compensate for past unfairness.
Americans with Disabilities Act Amendments Act of 2008 (ADAAA)
Passed in response to judicial interpretations that narrowed the scope of the ADA, this law reestablished the broad range of impairments that qualify as a disability and confirmed that mitigating measures should not be considered in determining whether a person's impairment qualifies as a disability.
Americans with Disabilities Act of 1990 (ADA) This sweeping civil rights law prohibited discrimination against people with disabilities in employment, public transportation, public accommodations, and telecommunications. Under Title I of this law, individuals are considered to have a disability if they have a “physical or mental impairment that substantially limits one or more major life activities” or are “regarded as having such an impairment.”
Anti-Discrimination Strategy An approach to disability policy that views individuals with disabilities as an oppressed minority group that faces discriminatory actions or behaviors and is entitled to compensatory remedies for that discrimination.[Page 312]
Architectural Barriers Act of 1968 This federal law mandated equal physical access to public buildings and established what is now know as the Access Board, which remains the primary source of U.S. accessibility standards.
Assistive Technology (AT) A term used to describe a variety of devices used to increase the independence and community participation of people with disabilities by aiding them with seating and mobility, communication, access, environmental control, or activities of daily living.
Assistive Technology Act Project (ATAP) Established under the Assistive Technology for Individuals with Disabilities Act, this program provides funding to states for the research and development, marketing, distribution, and technical support of AT equipment to persons with disabilities.
ATSee Assistive Technology
ATAPSee Assistive Technology Act Project
“Baby Doe” Cases A series of legal cases brought in the early 1980s on behalf of newborns with serious impairments whose parents and physicians refused to treat them.
Baremas System A method for assessing an individual's work capacity that assigns percentage values to various parts of the body to determine the extent of disability.
Belmont Report Formally titled Ethical Principles and Guidelines for the Protection of Human Subjects of Research, this 1978 report by the U.S. Department of Health, Education, and Welfare listed three ethical principles to govern research on human subjects: respect for persons and their autonomy, beneficence, and justice.
Bioethics Also known as health care ethics, this field of study deals with life and death issues involving basic values like autonomy, dignity, and respect for persons; it informs the analysis of moral issues that involve the concept of disability, as well as the lives, rights, and interests of persons with disabilities.[Page 313]
Bouvia v. Superior Court of State of California In this 1986 right-to-die case, the California Court of Appeals ruled that a mentally competent woman with quadriplegia had the right to end her life by refusing to take nourishment; the court found that the value of an individual's self-determination outweighed the state's legitimate interest in preserving life.
Bowen v. American Hospital Association In this 1986 ruling, the U.S. Supreme Court rejected the argument that withholding lifesaving medical care from “handicapped infants” qualified as discrimination under Section 504 of the Rehabilitation Act of 1973.
Bragdon v. Abbott In this 1998 case, the U.S. Supreme Court ruled that a woman who had been denied dental services because she was asymptomatic HIV-positive had been discriminated against.
Buck v. Bell This 1927 U.S. Supreme Court decision declared forced sterilization of the “feebleminded” to be constitutional and affirmed the right of states to sterilize citizens with disabilities against their will.
Capability Theory A broad theory of human good developed by Nobel Prize–winning economist Amartya Sen, and applied to disability by philosopher Martha Nussbaum and others, in which disability is analyzed in terms of limitations on an individual's freedom to achieve his or her life goals.
Civil Rights Act of 1964 This landmark legislation outlawed discrimination in public accommodation and facilities on grounds of race, religion, gender, or ethnicity, and banned discrimination on these grounds by any government agencies that received federal funding.
Civil Rights Act of 1968 Also known as the Fair Housing Act, this bill prohibited discrimination in the sale, rental, or financing of housing on the basis of race, religion, or national origin; it was later expanded to cover disability.
Civil Rights Approach An approach to disability policy and law that views persons with disabilities as members of a minority group who are entitled to equal citizenship.[Page 314]
CLASSSee Community Living Assistance Services and Supports
Community Living Assistance Services and Supports (CLASS) Established under the Patient Protection and Affordable Care Act, this voluntary national long-term care insurance program provides individuals with a cash benefit if they have functional limitations or disability.
Convention on the Rights of Persons with Disabilities (CRPD)
Adopted by the United Nations General Assembly in 2006, this international human rights treaty asserts that persons with disabilities have the same human rights as everyone else in all areas of life and, in particular, that they have the right to be active and fully participating members of society and to be full and equal persons in the eyes of the law.
CRPDSee Convention on the Rights of Persons with Disabilities
Dilemma of Difference A dilemma facing individuals and groups advocating for the rights of a minority or oppressed social group, such as persons with disabilities, in which the advocates feel pressure to de-emphasize features of the group that mark them as different in an effort to gain acceptance and equality, while at the same time seeing the need to highlight these same differences while seeking accommodations and accessibility in order to gain equality.
Disability A highly contested term that might best be analyzed in terms of the complex interaction between physical and mental impairments that are intrinsic features of a person's body and mind and that restrict mobility, vision, communication, or other body functions, and the physical, human-built, social and attitudinal environment. The environment may facilitate the performance of activities and social roles, in the form of assistive devices or accommodations, or may worsen the performance of activities and social roles, by acting as barriers.
Education for All Handicapped Children Act of 1975 This was the first federal law ensuring educational opportunity for children with special needs. It contained six mandated rights for qualifying students with disabilities, including the prohibition on excluding a child because of disabilities, shared decision making with parents, non-discriminatory testing and classification, and individualized educational programming in the least restrictive environment.[Page 315]
EEOCSee Equal Employment Opportunity Commission
English Poor Law of 1601 The first clear example of a law about disability in the English-speaking world, this legislation created three categories of the poor: those who could not work and were provided for in alms-houses, the able-bodied poor who were sent to work in workhouses, and the idle poor (and vagrants) who were sent to houses of correction.
Equal Employment Opportunity Commission (EEOC) This U.S. federal government agency is responsible for enforcing and interpreting several pieces of anti-discrimination legislation in the employment sector, including the Americans with Disabilities Act.
Ethics A branch of philosophy concerned with the systemic and analytic treatment of moral issues.
Fair Housing Amendments Act of 1988 Legislation that provided individuals with disabilities with protection against discrimination in housing, the right to make reasonable modifications to rental housing, and the right to accommodations in housing rules, policies, and practices.
Federal Security Agency (FSA) A U.S. government agency that administered Social Security, public health programs, and federal education funding from 1939 to 1953, when it was abolished and most of its responsibilities transferred to the Department of Health, Education, and Welfare.
FSASee Federal Security Agency
Functioning The normal physiological action or activity of a body part, organ, or system during human activity and involvement in life situations.
HCBSSee Home and Community-Based Services
Home and Community-Based Services (HCBS) A consumer-directed Medicaid program that offers people with disabilities such services as home modification, case management, pre-vocational and educational habilitation, and supported employment in order to help them avoid institutionalization.
Human Rights Approach This approach to disability law and policy, which is reflected in the 2006 United Nations Convention on the Rights of [Page 316]Persons with Disabilities, creates governmental accountabilities, not merely to protect specific rights, but also to support all areas of policy that need to be taken into account to successfully implement these rights.
ICFSee International Classification of Functioning, Disability, and Health
IDEASee Individuals with Disabilities Education Act of 1990
ILSee Independent Living Movement
Impairment A biomedical, underlying functional condition, intrinsic to the person, that constitutes the health component of disability; impairments may be sensory (difficulty in hearing or visual impairment), physical (difficulties in moving or standing up), or psychological (difficulty in coping with stress, depression, or memory loss).
Independent Living Movement (IL) A worldwide initiative undertaken by people with disabilities to promote self-determination, deinstitutionalization, and equal opportunity.
Individuals with Disabilities Education Act of 1990 (IDEA) This legislation required states to provide children with disabilities with a free and appropriate public education designed to meet each child's specific needs; it also established the definition of disability used in special education law.
International Classification of Functioning, Disability, and Health (ICF)
Released in 2001 by the World Health Organization (WHO), this international classification system is built on a conceptual model of functioning and disability that integrates the medical and social models so as to view functioning and disability as outcomes of the interactions between health conditions and environmental and personal factors.
Intersectionality The recognition that people with disabilities hold multiple social identities (i.e., there are people who are both disabled and women, disabled and elderly, and so on), and that these potentially influential group affiliations pose a challenge for disability policy and law.[Page 317]
Listings of Impairments Detailed guidelines published by the Social Security Administration for the medical step in the process of determining eligibility for benefits. The categories are defined by medical signs, symptoms, and laboratory findings that describe the level of severity required for each impairment to meet the administrative threshold for “work disability.”
Medical Model of Disability A conceptual model that focuses on diseases, injuries, and conditions that impair the physiological or cognitive functioning of an individual; it defines disability as a condition or deficit that resides within the individual and can be cured or ameliorated, or its progression stopped, through a particular treatment or intervention.
Minority Group Approach An approach to disability policy and law based on the principle that people with disabilities neither need nor want charity, pity, or government handouts, but only require the impact of ignorance, stigma, and discrimination to be removed in order to be self-sufficient and independent.
Model of Disability A general theory or conceptual model that embodies a fundamental perspective of what disability is and, therefore, generates one or more operational definitions of disability.
Morality Ethical beliefs and customs of particular cultures that can be empirically discovered.
NCLBSee No Child Left Behind Act of 2001
No Child Left Behind Act of 2001 (NCLB) Sweeping education legislation that established accountability measures, academic standards, and high-stakes testing designed to ensure that all students gain the skills needed to succeed in college and the workforce. Under NCLB, schools are required to report to the state educational authority (SEA) and demonstrate adequate yearly progress (AYP) toward a goal of 100% proficiency of all tested students by 2014.
Olmstead v. L. C. In this 1999 case, the U.S. Supreme Court upheld the provision in the Americans with Disabilities Act that required states, [Page 318]where appropriate, to place individuals with mental health problems in community facilities rather than isolating institutions.
Oregon Death with Dignity Act of 1997 A state law allowing mentally competent, terminally ill patients to request permission to self-administer lethal medications that were legally prescribed by a physician.
PASSee Personal Assistance Services
Patient Protection and Affordable Care Act of 2010 (PPACA) Sweeping health care reform legislation that required that all Americans have health insurance; barred health insurance companies from discriminating based on pre-existing medical conditions, health status, or gender; prohibited lifetime limits on coverage; prohibited rescission (dropping) of customers by insurers; created insurance exchanges; required employers with 50 workers or more to offer health insurance benefits or pay a fee; expanded Medicaid and provided premium assistance; and created temporary insurance pools for consumers with pre-existing conditions until insurance exchanges open in 2014.
Pennsylvania Association for Retarded Children (PARC) v. Commonwealth of Pennsylvania The consent decree in this 1972 case affirmed that all children with intellectual disabilities are entitled to a free and appropriate public education and that educating students with disabilities in a general education classroom is preferable to doing so in a segregated setting.
Persistent Vegetative State (PVS) A condition in which a person who has experienced a severe brain injury loses perception and cognition but may retain certain autonomic or involuntary, spontaneous physical behaviors such as breathing, blinking, and smiling.
Personal Assistance Services (PAS) A method of providing long-term care for people with disabilities within the home or community, rather than in an institution, by offering such services as home health care and assistance with personal care, activities of daily living, and housekeeping chores.
Policy All of the actions (and inactions) of the state addressed to governance, regulation, and organization for the public good, including the [Page 319]creation and implementation of laws, regulations, entitlements and prohibitions, income generation programs, and taxation strategies and spending priorities.
Policy Analysis A process for determining the effectiveness of state actions that involves interpreting and clarifying policy goals, exploring the relationship or connection between these goals and proposed objectives, evaluating the effectiveness of policy mechanisms, describing the policy tools involved, and monitoring the outcomes.
PPACASee Patient Protection and Affordable Care Act of 2010
PVSSee Persistent Vegetative State
Rehabilitation Act of 1973 This law prohibited discrimination on the basis of disability in federal agencies, programs, and employment, as well as in state and private programs that receive federal funding.
Section 504 A provision of the Rehabilitation Act of 1973 that stated that no qualified individuals with disabilities can be excluded from, denied the benefits of, or subjected to discrimination under any programs receiving federal financial assistance. Section 504 required that school districts provide a free and appropriate public education to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.
Sheltered Employment A form of employment in which individuals with disabilities are effectively removed from the general labor force and put into “protective environments” where the demands of competitive employment are minimized; such programs have long been criticized as warehousing solutions that are disrespectful to participants and provide them with no vocational training or prospect for entering the general labor force.
Smith-Hughes Act of 1917 This law provided vocational education for disabled veterans of the World War I.
Smith-Sears Act of 1918 This law promoted vocational rehabilitation and return to employment of disabled individuals discharged from the armed forces.[Page 320]
Social Ethics A branch of ethics devoted to issues involved in social organization and relationships between people in communities.
Social Model of Disability A conceptual model that focuses on the social barriers individuals with impairments face in their environment that create disadvantages or disabilities; disability, in this model, is a disadvantage caused exclusively by forces outside the individual, such as social exclusion, stigma, stereotyping and negative attitudes, and practices and policy that act as barriers to the full participation of persons with impairments.
Social Security Act of 1935 This landmark social welfare legislation created a system of old-age benefits, unemployment compensation, aid to “dependent and crippled children” and blind persons, and insurance to promote maternal and child welfare and public health.
Social Security Disability Insurance (SSDI) A federal government program that provides wage replacement income for individuals who have worked and paid Social Security taxes and become disabled according to Social Security criteria; its benefits are paid to disabled workers, their widows, widowers, and children, and eligible adults disabled since childhood.
Southeastern Community College v. Davis In this 1979 decision, which was considered a setback for disability rights, the U.S. Supreme Court held that the school's refusal to accommodate a hearing-impaired student did not constitute discrimination under Section 504 of the Rehabilitation Act of 1973.
SSDISee Social Security Disability Insurance
SSISee Supplemental Security Income
Supplemental Security Income (SSI) A federal government income supplement program that is designed to help low-income people who are elderly, blind, or disabled meet their basic needs for food, clothing, and shelter.[Page 321]
Supported Employment A form of employment in which individuals with disabilities are fully integrated within a competitive work environment, with supports of various sorts (i.e., a job coach, specialized training, transportation, or assistive technology) funded by state placement agencies.
Sutton v. United Air Lines In this 1999 case, the U.S. Supreme Court dramatically restricted the class of persons who could bring complaints for employment discrimination under the Americans with Disabilities Act by ruling that the law did not apply to those whose impairments could be mitigated by corrective measures.
Targeted Policy A policy that focuses on the needs and objectives of a defined sub-population, and is often created in response to historical inequalities of treatment or abuse.
Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA)
A federal government program intended to help create avenues to employment for people with disabilities by providing SSI and SSDI beneficiaries with resources to purchase vocational rehabilitation, employment preparation, and other support services; it also allowed people with disabilities to maintain Medicare eligibility for four additional years.
Toyota Motor Manufacturing, Kentucky, Inc. v. Williams In this 2002 ruling, the U.S. Supreme Court restricted the applicability of the Americans with Disabilities Act's anti-discrimination protections in the employment sector by narrowing the definition of a “major life activity” to include only those activities of “central importance” to most people's daily lives.
TWWIIASee Ticket to Work and Work Incentives Improvement Act of 1999
Universal Policy A policy designed to fulfill objectives fairly and equally for everyone, rather than only for certain sub-populations.
Vocational Rehabilitation Act Amendments of 1954 This legislation allocated more funds for state vocational rehabilitation programs and provided grants for special demonstration projects, research, and training to showcase rehabilitation as the primary response to the needs of America's disabled population.[Page 322]
Vocational Rehabilitation Act of 1920 This legislation extended the coverage of the Smith-Sears Act of 1918, which had been designed to provide vocational rehabilitation and return to employment of disabled individuals discharged from the armed forces.
Vocational Rehabilitation Act of 1943 This legislation initiated a new approach to rehabilitation by expanding coverage to include rehabilitation for people with mental illness and intellectual impairments and by providing funding to support research to reduce, prevent, and eliminate disabilities.
Voting Rights Act of 1965 This landmark civil rights legislation guaranteed equal access to political participation by outlawing various discriminatory state voting requirements.
Wyatt v. Stickney This 1971 federal court ruling established minimum standards for appropriate treatment of persons with disabilities in institutional settings, including the right to receive treatment designed to improve their condition, and the right to education.