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Chapter Twelve Identity and Culture Three Strands ofthe Movement Lex Frieden, former director of the National Council on Disability, refers to the two "strands" of the disability rights movement that came together in the effort to pass the Americans with Disabilities Act.! The first strand-made up of people with disabilities living independentlyin the community , without personal assistance servicesemphasizes civil rights as a means of securing equal access to transportation, education , employment, housing, and health care. The second strand-composed of people with severe disabilities who require personal assistance services in order to live independently in the community-stresses the services they need for maintaining their independence . Despite the different priorities embodied in these two strands, they share common goals, as the struggle for the ADA demonstrates . Many people who are now living independently in the community without personal assistance services recognize the inevitabilityofthe decline that comes with advancing age, and hence, their eventual need for such services. Many people who now require personal assistance services need the access to society that disability rights legislation provides. Edward Roberts, Judith E. Heumann, Fred Fay, and Lex Frieden are examples of early leaders of the disability rights movement who were intrinsically involved in both ofthese two strands. There is, however, a third strand-comprised ofinstitutionalized people with significant disabilities-focusing on deinstitutionalization with all the supports necessary to allow them to live in the community. Wade Blank and members of the continuing ADAPT crusade, who are identified with this strand, brought the issues of institutionalized people with disabilities to the wider disability rights movement. Fred Fay ofJustice For All observes, "Shamefully, here in America we have a couple of million people with disabilities incarcerated in institutions-many against their will, many drugged into silence, many strapped down in their beds-people who, with a little assistive technology and a little attendant care, could be living productive lives in the community ."2 Isolated not only from the greater society, but also until the 1980s from the disability community, this third strand infused the disability rights movement with a new radicalism and militancy. Cheryl Marie Wade, 1994 recipient of a National Endowment for the Arts Solo Theatre Artist Fellowship, comments sardonically on the alienation ofpeople associated with this third strand from the mainstream disability community: "OK. I admit it. I am weaker and more vulnerable than most nondisabled people and many disabled people , too. So throw me out ofthe movement. Take away my Crip Power button."3 Yet she explains: We who are on the outside, living independently, using attendants for intimate care, owe to those of our brothers and sisters still dependent on family care or institutions to tell the truth about the pain and struggle of this life as well as the joy and freedom.... But if our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden. Nonetheless, Wade dearly positions herself on the side of life: "But it [personal assistance services] is the only deal in town. And no matter how difficult, well worth it when you consider the alternatives." The contradictions, the "gnarled strands" of "the disability experience," have been characterized as a "hard to unravel ... tangled , knotted ball" of isolation and differentness versus a common identity; images of weakness, vulnerability, enforced childishness, learned helplessness versus defiance, willingness to make waves and change the status quo; pity, destroying dignity, fear of our differentness, our "imperfection," as ifperfection were humanly achievable; and then our own fear, raw fear of attitudes that would destroy our kind, whether by genocide, selective abortion, euthanasia, assisted suicide or rationing ofcare.4 IDENTITY AND CULTURE 201 Disability Pride: Celebrating Difference Disability activist Mary Jane Owen challenges the obvious impediment to the development of a group identity by people with disabilities: "It's hard to organize around having something in common-disabilitythat none of us really wants."s Yet she presents an analogy between people with disabilities and another minority group: "But the children of slavery came together around physical characteristics that the majority society taught were ugly. 'Black is beautiful' seemed an audacious assertion when it was first made." Similarly, Owen suggests that despite the marginalized status imposed on the disability population by the greater society, people with disabilities can bond with one another in mutual affirmation. Howcan...

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