The Disability Rights Movement: From Charity to Confrontation
Doris Zames Fleischer and Frieda Zames, The Disability Rights Movement: From Charity to Confrontation
Ten years ago, I favourably reviewed the original edition of Fleischer and Zames’ landmark text on the American disability rights movement in these pages. Much has happened since then in both the disability rights movement and the United States at large. It is accordingly useful and timely to look at the revised version of this important book and take stock of the current political conjuncture. While many on the left have at the very least a rudimentary knowledge of feminist and gay/lesbian struggles, most people even today tend not to think about disability rights as a political issue. Rather, it is perceived as a personal problem to be overcome even though people with disabilities rank at the bottom of most measures of well-being including poverty rates, education rates, and labour market participation rates.
At the heart of this deeply rewarding book is the very simple yet transformative idea that it is structural barriers in society, both physical and attitudinal, that impair the lives of people with disabilities. Known as the social model of disablement, it marks a paradigm shift away from a tradition of pity and segregation that focused overwhelmingly on fixing physiological impairment. Yet the disability rights movement is notoriously diverse, encompassing people of all races and genders who are learning-disabled, Deaf and hard of hearing, blind and visually impaired, mobility impaired, have psychiatric conditions, and much more. The authors do an admirable job of capturing the rich diversity of the disability rights movement in a relatively concise space, introducing the reader to numerous largely unknown but vital disability organizations. This is no small achievement in a movement that encompasses such a wide range of issues and includes activists with many different political perspectives. This tension of diversity amidst the need for unity is a constant throughout the book.
The revised version consists of thirteen chapters, including one additional chapter and an updated preface that are new to this edition and presumably written by Doris Z. Fleischer (her sister Frieda passed away in 2005 after a long history of disability rights activism in New York City, and a street in Manhattan is named in her honor). The original chapters, however, do not appear to be revised. They encompass a range of topics including the Deaf and blind movements, Franklin Delano Roosevelt’s struggles to hide his very significant physical impairments from polio while in office, the Independent Living Movement and deinstitutionalization, Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA), healthcare and jobs, the debate around assisted suicide, disability and technology, veterans with disabilities, education, identity and culture, and a final new chapter updating the book on developments during the first decade of this century.
The writing is throughout sharp and clear. While not written from a radical perspective, the book is particularly strong in discussing the healthcare issues and barriers facing people with disabilities. It is also practical, an increasingly rare quality among academic books published by university presses. Legal cases are cited in many chapters even though neither author was trained in law. While disability rights movements have unfortunately all too often been associated with some of the most obscurantist of poststructuralist fads (one would be hard pressed to go to a disability studies conference today and not come across panels on Deleuze, the body and identity), Fleischer and Zames eschew grand theory to give the reader a grassroots approach. They make their points forcefully but simply and through a large array of interviews, demonstrating a great deal of research. Make no mistake: the book’s politics are no doubt liberal rather than radical. But their interview-based approach has the advantage of allowing the voices of disability rights activists to come alive, and the reader is richly rewarded.
This is not to say the book avoids controversy. There is a vivid account, for instance, of fascinating and often very personal debates between rival blind organizations and their conception of equality. The authors recount how the National Federation of the Blind (NFB), founded in 1940 by academic Jacobus tenBroek, and the more recent American Council of the Blind (ACB) are both advocates for the rights of blind people and yet have held radically different positions about how blind people should be empowered. Decades ahead of his time, tenBroek advocated for amendments to the Civil Service Act to allow blind people to work for the federal government. Over time, however, sharp ideological differences emerged among NFB activists, leading some to form a breakaway group that became the ACB in the late 1950s. The NFB has ignored blind people who choose to use guide dogs, which they regard as presenting an excessively dependent image of blind people, while the ACB has embraced guide dog users. The NFB also objected to litigation by the ACB to prevent the purchase of subway cars in the New York City Subway system that posed safety risks to blind people who could mistakenly fall to their deaths on the subway tracks. The NFB argued that such an accommodation was completely unnecessary as a properly trained blind person could avoid injury. Space limitations preclude a more in-depth commentary but I would note this is one of countless colorful anecdotes presented throughout the book.
This seemingly obscure debate within the blind community underscores larger ideological differences within the disability rights movement as a whole that other authors have tried to analyze. Samuel Bagenstos, a law professor at the University of Michigan and a former senior official in the Obama Administration’s Justice Department, has correctly drawn attention to the fact that there has always been a libertarian current in the disability rights movement that has emphasized the ability of people with disabilities to be productive and leave the welfare rolls if wheelchair accessibility and other basic forms of accommodation were provided. Such a narrative was in fact crucial for obtaining Republican Congressional support for the passage of the ADA but at the risk of devaluing those people with disabilities who remain outside the labour market. Others like Sunny Taylor have pointed out the need for transcending the notion of valuing people for their work.
While Fleischer and Zames do not fully address this issue, they provide a compelling account of the different strands that make up the disability rights movements. They usefully identify three strands of people with disabilities: those who seek to challenge employment, education and transportation discrimination but do not require personal assistance services for activities of daily living such as bathing, dressing and toileting; those people with disabilities who do require personal assistance services and receive them in the community; and the many people with disabilities who tragically remain institutionalized. The authors are particularly persuasive in documenting the profound funding bias for the all too often oppressive nursing homes dominant in the US Medicare system and the struggles of the grassroots non-partisan group ADAPT, identified closely with this third strand of people with disabilities, that has become legendary among disability rights activists for its militancy and commitment to demonstrations and direct action even if it results in arrests.
The final chapter, new in this edition, documents various developments over the last decade. In keeping with the authors’ penchant for legal commentary, the chapter usefully discusses some of the controversial decisions of the US Supreme Court on the definition of disability in the ADA and the ultimately successful passage of federal legislation, the ADA Amendments Act (ADAAA) in 2008, restoring Congress’s original broad definition of disability. But again the focus is primarily on the activists and ordinary people who struggled from below. The authors document an 18-month and 120-stop bus tour to promote the ADAAA organized by Jim Ward, President of ADA Watch and a man with a psychiatric condition. Grassroots activism at its finest, the advocates not only raised awareness for the ADAAA but showcased a photographic montage of the ADA itself to educate audiences, garnering significant media coverage across the country. Another development mentioned in this chapter that warrants closer attention by scholars and activists alike is the passage in 2008 of the Genetic Information Nondiscrimination Act (GINA) which protects Americans with respect to the discriminatory use of genetic information in employment and health insurance. Finally, a third key issue highlighted that deserves greater attention is visitability or the idea that all new single-family homes should be required to have basic accessibility features to enable people who use wheelchairs to visit. A grassroots organization based in Atlanta, Concrete Change, has led the fight against recalcitrant builders. Such a movement would radically reshape housing options for people with disabilities.
If there is any weakness in this volume, it is likely the systematic bias toward activists based in New York City, reflecting no doubt the authors’ origins. While New York City is certainly an important site for political activism, the San Francisco Bay Area is equally important and was home to the iconic HEW demonstrations in 1977 where people with disabilities occupied government offices for weeks to protest the delay in the release of disability rights regulations pursuant to the Rehabilitation Act. This, however, is a relatively minor point in an otherwise excellent text that serves as a valuable introduction to the issues facing Americans with disabilities.
Ravi Malhotra Faculty of Law, Common Law Section University of Ottawa Ravi.Malhotra@uottawa.ca