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30 1 Childhood The idea that disability is a taint, a statement about the inherent worth or character of the person with the disability, works itself out most painfully on children with disabilities who absorb, often without knowing, this prevalent but generally unspoken judgment. It can be manifest in everything from schools with names such as “The Industrial School for Crippled and Deformed Children”1 to run-ins on the street with complete strangers wanting to know “what’s wrong with you?” to a popular culture that routinely uses disability to denote wickedness (think of Captain Hook, Doctor Strangelove, and every malevolent fictional character sporting an eye patch, prosthetic, or facial scars).2 This harsh social environment is then used to justify segregated education and even institutionalization, as when parents are told that their child needs to be “protected” from society, and will be “better off with her own kind.” Disability has in fact often been considered so shameful, so deviant, that even to talk about it has been perceived as distasteful or demeaning. In interview after interview many of the major figures in the disability rights movement of the 1970s and ’80s describe how their parents “never talked about” their disability. Neil Jacobson’s parents went a step further. Jacobson spent hours a day doing physical therapy in a vain effort to get him to walk. “I never had a wheelchair until I was in high school. . . . My father built a dog house for the wheelchair, because he didn’t want the wheelchair in the house. To him, the wheelchair was a symbol of disability. A symbol of pity.”3 Add to this the fact that many of these children needed (or were told they needed) surgeries or other treatment, sometimes painful, often requiring hospitalization or extended separation from parents and home. The result was that some children came to see themselves as essentially powerless, flawed, even unworthy of the love that “normal” children generally take for granted. Of course, every child’s experience is different, and this isn’t to say that Childhood 31 every person with a disability who grew up prior to 1970 lived a life of abject misery. (Nor does it mean that the advent of the disability rights movement has set everything right). But any understanding of the disability rights movement—why it was necessary, what it has meant, and why it took so long to happen—has to incorporate an understanding of how destructive these allpervading social messages have been. Almost every activist with a congenital disability, or one acquired early in childhood, recalls both the insidious effect of this cultural environment, and the epiphany that came with understanding , finally, that the problem was out there—in society—and not in here, in his or her own character. For some, this realization would not come until they were well into adulthood. For many, it wouldn’t come at all until participation in some action—for instance the Section 504 demonstrations of 1977, or an ADAPT blockade of the late-1980s. One response to this realization has been the development of “disability pride”—even what some describe as “disability chic.” Another response has been a sense of anger that has empowered many movement activists through much of their political lives. “People talk about how some of us are very angry,” Ed Roberts told film maker Billy Golfus in 1997. “Of course we’re angry. We’ve been through the worst kind of atrocities, attitudes toward us that see us as vegetables, that see us as sick and unable and having no future. I mean that’s got to piss you off. And to me, anger is one of the best things we’ve got going in this movement. Because when you’re angry, that gives you a tremendous amount of energy.”4 Lee Kitchens “The only little people that you saw anything about besides in the movies were circus performers.” Lee Kitchens was a brilliant engineer who developed the first hand-held calculator for Texas Instruments in the early 1970s. He was also a little person— someone the general public back then would commonly call a “midget”—a label which is seen by little people themselves as a term of derision. Born in 1930, Kitchens joined Little People of America (LPA) soon after its founding in 1957, and in the 1970s was a founding member of the Texas Coalition of Citizens with Disabilities. Kitchens died in May 2003. 32 chapter 1 In the thirties...


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