Protests: Contentious Politics, 1970-1999
Demands Related to Developmental Disabilities
The earliest demands relating to developmental disabilities (which used to be called mental retardation), primarily made by parents, were related to the flagrant and severe abuses that occurred in the institutional settings in which their children lived. Some of these abuses even caused deaths. Some of the most egregious problems have been reduced, if not solved, as a result of lawsuits and other actions brought by parents as part of the parents’ movement described in chapter 1. But abuses and deaths of adults with mental retardation continue to this day (see, for example, Vobejda, 2000). Policy changes that favored deinstitutionalization and “normalization” reduced the numbers of children who live in institutional settings, but approximately 60,000 people with developmental disabilities still live in large state institutions, with another 40,000 living in large private facilities (Ferguson, personal communication, 1998). Thus, demands are still made for appropriate education and state support for people with developmental disabilities. Ferguson (1987) notes, however, that some of the demands made by the disability community have bypassed people with severe retardation, especially those for whom independent living is not, and never will be, possible. He notes that “disability,” when used in the context of disability rights, has come to mean physical disability, not cognitive disability, and the minority group model, which reduces the limitations that accompany physical impairments to societal (i.e., discriminatory) practices, cannot deal with the situation of people who have severe mental retardation. As he notes, this has occurred partly because the policy reforms being sought by the independent living movement are being justified on economic grounds—if people with impairments could become self-reliant, they could cease to be dependent upon society’s handouts. People with severe cognitive impairments will not cease to be dependent and will never live independently.
A collective consciousness has driven contentious political action by people with impairments. We have attempted to define the ideas that form this consciousness, spell out the grievances that have lead to action, and suggest some of the remedies. The problems identified are diverse and deeply rooted in our society. They range from the ways deafness and disability are perceived to concrete problems of accessibility, discrimination, and, some would contend, human rights violations (see any issue of Dendron).
solutions are also diverse. They involve a cultural recategorization in which
disability would be reframed. This reframing would include viewing people with
impairments as a minority group lacking in civil rights, and would call for
rethinking of disability policies so that they are not based upon an automatic
equating of “disabled” with “unable to work.” The recategorization would
involve new rules, new roles, and sometimes new construction.
In the next chapters, we show how various demands have been translated into contentious political action. We show how members of a powerless, politically almost invisible community took the ideas that form the collective consciousness of a social movement and translated those ideas into action. We examine the ways in which the rhetoric of the protests fits with the actions that have been taken.