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Disability Protests: Contentious Politics, 1970-1999

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These demands revolve around choice, self-determination, and self-actualization. People who live in institutions are told what to do and when, where, and with whom to do it. Called total institutions by Goffman (1961), such places permit no choice or self-determination. Residents (or patients or clients, depending upon the terminology favored by a particular institution) are awakened at the convenience of the institution, they may be dressed in the uniform of the institution, and their activities are scheduled and limited by the institution. In short, they have no freedom of choice.9 They do not determine their own lives; rather, they are put in child-like and dependent positions, consistent with the sick role they are assumed to be in. Some younger people with impairments live in nursing homes, whose populations are primarily older people, because that is the only way they can get the assistance they need for daily living activities.

The independent living movement is fighting this type of life. If society is willing to pay money to keep people with impairments in institutions, it should be willing to spend that same money keeping them out of institutions. Many people who now live in institutions would be able to live on their own if they had personal assistant services. Personal care attendants should be available to assist disabled people with those tasks of daily living that they cannot do for themselves. Help might be needed in tasks such as turning over in bed, getting dressed, bathing, eating, driving, house cleaning, and shopping. Activists in the independent living movement argue that people with impairments who have this kind of assistance can work and be contributing, tax-paying citizens. Furthermore, they can and should be able to control their own lives. They should be the bosses. They should hire their own attendants, who should work for them as for any other employer except that their place of work may be in their boss’s house.

The independent living movement is also making monetary demands. One demand is for federal or state support for personal care attendants, in addition to, or instead of, such support for institutional care. Medicare of Medicaid assistance should not only pay for personal care within institutions but should pay for care within people’s own homes whenever possible. Some activists wish to see payments for personal care attendants uncoupled from health insurance, while others would like to see the rules regarding government-sponsored health insurance changed so that it would pay salaries for personal care attendants outside of institutions (and under the control of the person using the services).

Independent living demands may appeal to different age groups and impairment types than the other demands discussed here. DeJong (1983) suggests that these demands are most relevant for people with severe impairments—primarily spinal cord injuries, muscular dystrophy, cerebral palsy, multiple sclerosis, and postpolio syndrome. This part of the disability movement focuses on older adolescents and younger adults of working age. It was initially not yet concerned with older people, although, as these younger people with impairments age, its focus is likely to shift.

Activists in the independent living movement are demanding a reconfiguration of disability policy (Ascher et al., 1988; DeJong, 1983; Zola, 1983a), which, at both the federal and state levels, has traditionally focused on income support and medical and vocational rehabilitation (Berkowitz, 1979; Liachowitz, 1988; Stone, 1984). Disability policies have been based upon the notion that people with impairments are ill, are involuntarily incapable of performing economic roles or social functions, and are therefore excused from them. Such people are deemed worthy of public support, because the “illness” is not their fault (Scotch, 1994).

Independent living activists are also demanding that the old lens through which disability was viewed be stripped off for policy purposes. Their concern, however, is less with extending the frame of rights than it is with “day-to-day life and making decisions that lead to self determination” (Pelka, 1997: 166). They want people with impairments not to have to live out the sick role but to be able, with assistance, to live out a “well” role. Faced with a person with an impairment who had a job but no accessible transportation, independent living activists would want to assist the person to obtain usable transportation, while disability rights activists would take action to make local transportation accessible to that person and all others as a matter of “rights.” As Pfeiffer (1988) notes, the independent living movement is concerned with providing services that will make it possible for people with impairments to function independently. Activists in this movement want people with impairments not to be viewed as patients who need to live in hospitals, nursing homes, or other types of institutions, but as people who can, with some assistance, live well outside of institutions. They note that assistance outside of institutions costs less than the same assistance when given inside an institutional setting.


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