Vol. 14 No. 7 (July 2004), pp.579-582
VOICES FROM THE EDGE: NARRATIVES ABOUT THE AMERICANS WITH DISABILITIES ACT by Ruth O’Brien (ed.). New York: Oxford University Press, 2004. 312 pp. Cloth $55.00 / £40.00. ISBN: 0-19-515686-2. Paper $16.95 / £8.99. ISBN: 0-19-515687-0.
Reviewed by Richard K. Scotch, School of Social Sciences, University of Texas at Dallas. Email: email@example.com
In VOICES FROM THE EDGE: NARRATIVES ABOUT THE AMERICANS WITH DISABILITIES ACT, Ruth O’Brien has compiled a fascinating series of personal accounts, both fictional and nonfictional, concerning disability and discrimination. Her goal is to illustrate dilemmas associated with the Americans with Disabilities Act of 1990 (ADA)—dilemmas for individuals who face barriers and stereotypes because of their disabilities, and dilemmas of law and policymaking to overcome those barriers and stereotypes appropriately and effectively.
The stories in the book do not directly address the mandates of the ADA, or legal actions taken to invoke its protections, but rather they involve issues created by societal responses to disability. Some of these issues are specific to situations anticipated by this anti-discrimination statute—by employers to employees, by business operators to customers, and by providers of health care, public transportation, and information services to people seeking assistance. But all of the accounts also are related to the ways which both those with and without disabling conditions think about disability, what it means to have an impairment that may or may not be disabling (depending on the societal response), the consequences of responses that may welcome or discourage participation, and the choices about responding to disabling barriers with anger, with humor, or with resignation.
The personal narratives come from a variety of sources. Most are actual personal accounts by people with a variety of impairments, including deafness, blindness, HIV/AIDS, mobility impairments, and other physical conditions. Some are fictional; many are accounts by journalists, scholars, essayists, poets, and disability activists. Contributors include Joan Aleshire, Leonard Kriegel, John Hockenberry, Stephen Kuusisto, and several others. While the authors are certainly atypical in their ability to articulate their experiences, the themes expressed are common to the experiences of disability, and reflect commonly expressed concerns in the field of disability studies.
The juxtaposition of narratives, legal analysis, and disability scholarship provides a rich and multifaceted overview of disability rights law, and of the experience of living with a disability in the contemporary United States. O’Brien has organized these accounts into sections paralleling the question of how we define disability and the various titles of the ADA, and following each set of accounts, she provides her own [*580] review of the relevant legal issues and court decisions, as well as analyses from the broader literature in disability studies, drawing on the narratives to illustrate her discussion. There are sections on definitions of disability, employment, services provided by state and local government, and public accommodations, as well as an excellent bibliographic essay.
Ruth O’Brien is Professor of Government at John Jay College of Criminal Justice and Chair of the Political Science Program at the CUNY Graduate Center, and the author of the excellent 2001 book CRIPPLED JUSTICE: THE HISTORY OF MODERN DISABILITY POLICY. She has a clear commitment to advancing the rights of people with disabilities, but this is an intriguing work of scholarship rather than simple advocacy. She offers the reader a thoughtful and knowledgeable context within which to ponder the dilemmas people with disabilities face in navigating a world that offers the appearance, but not always the reality, of legal protections from discrimination.
Federal laws have protected people with disabilities from discrimination in education and federally supported services for more than three decades, and it has been fourteen years since the enactment of the ADA, the watershed civil rights statute that prohibits discrimination in employment, public services, public accommodations, and telecommunications. When these laws were passed, many advocates for the rights of people with disabilities believed that such legal guarantees would bring about major changes in the social position of people with disabilities, who would have a solid legal standing to claim rights to participate in employment, public services such as public transportation and education, and civic life. It was hoped that arbitrary barriers – physical, cultural, and bureaucratic – to independence and access would be struck down as an expression of our social commitment to equity. After all, had not the Civil Rights Acts of 1964 and 1965 opened up employment, public accommodations, and voting to people regardless of their race, religion, or national origin? While African Americans and other minorities had not achieved social or economic equality as the result of these civil rights laws, they at least had been guaranteed legal recognition and a broad public commitment to full citizenship.
In response to the mandates of federal civil rights law, many institutions have taken action to better accommodate people with disabilities, although many others have not. Public schools have expanded special education programs over the past three decades and have incorporated many children with disabilities into regular schools and regular classrooms. In many small ways, oppression based on disability has decreased, and accommodations and universal design have become institutionalized. Despite these advances in civic participation, however, people with disabilities remain far outside of the social and political mainstream, frequently blocked from holding jobs, using government services, owning and visiting housing that is accessible, attending public events, and even voting. The medical model of disability continues to dominate much of American culture (and elsewhere in the [*581] West), as it has for more than a century, depicting the social isolation frequently accompanying an impairment as an inevitable product of medical pathology, rather than as the product of a society which refuses to accommodate physical and mental differences. Such isolation, and the penurious and enforced dependency that typically accompanies it, was the target for the ADA.
There is considerable disagreement about why the ADA has changed so little for Americans with disabilities. Many private businesses and governmental bodies have resisted making accommodations, challenging the legitimacy of the ADA’s mandates and waiting until the courts make specific demands on them to comply. As O’Brien observes, a series of appellate and Supreme Court decisions have drastically limited the scope of ADA requirements, by narrowing the definition of who is protected from discrimination by the law, by refusing to apply the ADA to many activities carried out by state governments considered to be sovereign, and by an unwillingness to understand many barriers faced by people with disabilities as arbitrary and discriminatory. In some cases the Court has upheld key provisions of the law, such as in OLMSTEAD v. L.C. (1999), in which states were directed to reduce their reliance on segregated institutional care and to expand community-based services, and more recently in TENNESSEE v. LANE (2004), where the Court affirmed the ability of citizens to sue states for money damages in two cases involving accessible court houses. Nevertheless, little has changed overall to reduce the isolation and dependence created by state policies that favor institutional over community services.
Progressive scholars supportive of disability rights have decried judges who do not appear to understand or acknowledge the socially constructed barriers faced by people with disabilities, and who tend to rely on demeaning stereotypes of disability associated with the medical model rejected in these laws. Conservative critics of the ADA have suggested that the very existence of mandates may have discouraged employers from considering employment of people with disabilities due to the alleged costs of accommodating them, despite empirical studies demonstrating that most accommodations are associated with small costs, particularly when universal design principles are used in new construction and workplace routines. But these analyses, however well formulated, may focus on conceptual and statistical issues that are far removed from the everyday realities faced by individuals with disabilities. Many readers will learn far more about the experience of disability from the narratives presented than from the work social scientists and legal scholars address to their professional colleagues.
Yet this book should also be of great interest to scholars and those concerned with public policy. On their own, the narratives tell us a great deal about the promise and limitations of anti-discrimination law. Ruth O’Brien’s postscripts relating these accounts to legal issues provide many fresh insights into disability rights law through her nontechnical analyses of legal issues and her integration of concepts drawn from the growing field of disability studies. She draws upon an impressive range of sources to examine issues related to the ADA, and raises a number of important [*582] questions all of us should be considering. VOICES FROM THE EDGE should be of particular interest to students in law, public policy, political science, and disability studies, all of whom would benefit from this multifaceted approach to disability and discrimination.
O’Brien, Ruth. 2001. CRIPPLED JUSTICE: THE HISTORY OF MODERN DISABILITY POLICY. Chicago: University of Chicago Press.
OLMSTEAD v. L.C., 527 U.S. 581 (1999).
TENNESSEE v. LANE, 541 U.S. ___ (2004).
Copyright 2004 by the author, Richard K. Scotch.