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113 6 Discrimination, Part 2, and Early Advocacy Attempts had been made before the 1960s to address discrimination against people with disabilities. The League of the Physically Handicapped, the American Federation of the Physically Handicapped, the National Federation of the Blind, and the National Association of the Deaf had all, with some success, pushed for changes in how American society treated citizens with disabilities. But by the early 1960s, both the League and the American Federation were defunct, and neither the NFB nor the NAD considered themselves as part of a broader, cross-disability rights movement. Meanwhile, other disability-specific groups, such as United Cerebral Palsy, Inc., and the Muscular Dystrophy Association, were dedicated to providing services to individuals with particular illnesses or disabilities and support for their families rather than to any broader, rights-based agenda. As a result, people who wanted to take action against instances of discrimination or prejudice generally had to do so as individuals. In the process, they often met others who had had similar experiences. The coming together of these individuals marked the beginnings of the cross-disability rights movement still active today. Ed Roberts “If two or three things had been different, I might have had a whole different kind of life.” Edward V. Roberts is most often identified by his biographers as “the father of the independent living movement,” in recognition of his role as a cofounder of the Center for Independent Living in Berkeley in 1972 and the most visible proselytizer of “the independent living philosophy.” Roberts was also a cofounder (with Judy Heumann and Joan Leon) of the World Institute on 114 chapter 6 Disability in 1983, using the money he had received as a MacArthur Fellow to spread the ideas of independent living and disability rights. Roberts often told the story of how, as he was lying in his iron lung after contracting polio as a teenager, he overheard a doctor tell his mother, Zona, that he would be “better off dead” than to live his life as “a vegetable.” The statement, callous as it may have been to say in Roberts’s presence, voiced a commonly held opinion among medical professionals of the time. To be, as Roberts would remain his entire life, a functional quadriplegic, growing more dependent on a respirator as he aged, is still regarded by many people as “a fate worse than death.” Years later he would joke that if he had to be a “vegetable,” he would prefer to be an artichoke: “A little prickly on the outside [but] with a big heart. . . . I’d like to call on all the vegetables of the world to unite.” That early moment wasn’t the last time that Ed Roberts would be written off by medical and rehabilitation professionals. One of the more ironic twists in Roberts’s story is that California governor Jerry Brown Jr., impressed with Roberts and the independent living movement, in 1975 appointed him director of the state Department of Rehabilitation—the agency that little more than a decade earlier had deemed him ineligible for assistance in getting a college education because he was vocationally “infeasible” and thus unlikely ever to get a job. Ed Roberts died of a heart attack on March 14, 1995. He was fifty-six years old. At home, I’d been virtually a shut-in for years. I remember when a social worker and my mother came to me and said, “If you don’t begin to get out of here, you’re going to stay here the rest of your life.” So they loaded me up in the station wagon and took me to my school [Burlingame High School in California], and they started to unload me. It was lunchtime; there must have been two hundred students, or it seemed like. They were all eating lunch around this court, and every one of them turned to stare at me. One of the reasons that I had not come out was that I was terrified of being stared at. That just indicated to me how awful it was and how ugly I was. But I remember that day when they were getting me out of the car, and all of a sudden my worst fear came true: everybody was staring at me. And when I’d look up at them, they’d look away. And something remarkable occurred to me while I was there. Discrimination, Part 2, and Early Advocacy 115 The first thing was that...


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