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ix Preface “Nothing about us, without us” is one of the most compelling slogans to come out of the disability rights movement. The phrase succinctly conveys one of the movement’s central themes, reflecting the fact that people with disabilities , down through the ages, have generally been seen as objects of scorn or pity, “cases” to be cured or “managed,” problems to be confronted or ignored.1 The most basic decisions about their lives—decisions about where they should live, if and how they should be educated, if and where they should work, and whether they could or should marry and raise families—have most often been made entirely without their input. Advocates have had to raise their voices, often in frustration and anger, sometimes in desperation, to a society that assumes they have no voice at all. My purpose in this book is to recount the political struggle for disability rights in the United States, focusing on the decades immediately preceding the passage of the Americans with Disabilities Act of 1990. I do this by using the first-person accounts—the voices—of people with disabilities.2 Occasionally I feature the account of an ally—a parent or non-disabled advocate whose work was crucial to the success of the movement or who was a witness to seminal events. The vast majority of the narratives featured here, however, are told by those who had most at stake in the success or failure of the movement: people who are themselves disabled. I have organized the narratives thematically in several broad categories, collected in chapters ordered more or less chronologically. Even so, someone reading the book from beginning to end will notice that there are shifts backward and forward in time. Such shifts are inevitable, since the various facets of the disability rights movement generally operated independently of one another before joining the broad, cross-disability coalition that advocated for the passage of the ADA. One could even say, as Paul Longmore does in his oral history, that “there is no single, homogenous disability rights movement [at all]. There really are at least a half dozen movements . . . and each one reflects the interests and issues and needs and concerns of a particular disability constituency . . . . In the last generation or so, since the mid-1970s, they’ve allied with one another politically. . . . That’s how the ADA got passed.”3 I have dedicated several chapters to particular events or campaigns that I regard as crucial milestones on the road to the ADA: the campaign in 1977 to force HEW secretary Joseph Califano to sign regulations implementing Section 504 of the Rehabilitation Act of 1973, for example, and the Deaf President Now! campaign at Gallaudet University in spring 1988. There are also chapters devoted to pivotal organizations, including Disabled in Action (DIA) and American Disabled for Accessible Public Transit (ADAPT). When we get to the struggle to pass the ADA itself, I have divided the narrative into segments on drafting the bill, those inside and outside Washington who advocated for its passage, and crucial events that culminated in the bill’s being signed into law. The interviews I use are taken primarily from three sources. The first is the collection of oral histories compiled under the auspices of the Regional Oral History Office of the Bancroft Library at the University of California at Berkeley, as part of its project on the Disability Rights and Independent Living Movements (DRILM). The project officially began in 1996, when Susan O’Hara and Mary Lou Breslin approached the university with the idea of recording the histories of those individuals who spearheaded the founding, first, of the Physically Disabled Students’ Program at UC Berkeley and, second, the Center for Independent Living, also in Berkeley. The scope of the project was expanded in 2000 to encompass accounts of disability activists across the country, when I was invited to join the effort. The second source are interviews recorded by the Disability Rights Education and Defense Fund (DREDF) in association with Access Video, and under the auspices of the University of San Francisco, with funding provided by the National Institute on Disability and Rehabilitation Research. These videotaped “leadership interviews” were conducted in 1999–2000 to mark the tenth anniversary of the passage of the ADA and are also archived at the Bancroft Library. Third are interviews I conducted myself, unconnected with the DRILM. Some of these, for instance, my interviews with Justin Dart Jr., were done before I approached the University...


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