Protests: Contentious Politics, 1970-1999
In part, this movement is challenging the professional domination of professional in the fields of medicine, rehabilitation, psychology, social work, and related fields. As such, it is related to social movements such as the patients’ rights movement, the consumers’ rights movement, and the self-help movement (DeJong, 1983; Pelka, 1997: 61), all of which have similar demands.
Overall, the basic independent living demand is that people with impairments should be able to direct their own lives and participate actively in the day-to-day life of the community (Asher et al., 1988). They want self-actualization to be possible for people with impairments, societal integration for people who have been institutionalized or extremely marginalized or both, and they want personal assistance services to be provided so that living outside of an institution can be possible.
Pfeiffer (1988) notes that divisions between what are frequently called the disability rights movement and the independent living movement are not recent and he notes that sometimes the two movements are lumped together under the rubric of the independent living movement. Furthermore, he notes that if both do not occur, people who do not receive services may not be able to fight for rights. They are two halves of the coin that are necessary for people with impairments to be fully functioning citizens.
There are several other issues with which some cross-disability activists are concerned, including assisted suicide, disability culture, portrayals of disabilities, and telethons. These issues primarily concern how disabled people are perceived by society. These are important issues for many disabled activists, but their demands do not fit neatly into the categories of civil rights and independent living, so we consider them separately.
Assisted suicide is one of the newer issues that concerns activists, although it is related to issues of genetic testing and abortion that have concerned some activists for many years. With national awareness of the situations in which Dr. Jack Kevorkian has helped some people to end their lives, people with impairments have become quite concerned about its usage. If assisted suicide becomes a legal way for people with impairments, seen as pitiable, helpless, and hopeless, to take their own lives, it can be used also as an excuse for society not to provide them with those services that would permit them to live satisfactorily. They admit that people with impairments who have not had services may not be surviving well. But, they argue, with services these people could survive quite well. The disability community is demanding that society provide services so that people can live rather than legalize assistance for them to kill themselves.
Another one of the issues that concerns people with impairments is how they are portrayed. One part of this concern relates to newspaper coverage of disability, which tends to fall into two categories. One category consists of “Tiny Tim stories,” which focus on the sad, unlucky, disabled person, in need of pity and charity. These stories tend to focus upon the terrible situation a person with an impairment faced or faces; they imply that impairment caused that pitiable state. The other category consists of “supercrip” stories. These stories portray a plucky disabled person who, despite having an impairment that ought to make it impossible, can climb mountains, literally or figuratively. The spotlight is on someone who has achieved a goal that would have been a superhuman feat even for someone without an impairment and may be even more of a feat for a person with an impairments (Shapiro, 1994).
These two types of stories clearly derive from the medical model. The first Tiny Tim stories suggest that the person cannot be blamed for being sick, because one of the tenets of the sick role is that people are not responsible for becoming ill. And, the stories imply that people who are sick should be pitied because they are unable to participate in society. The supercrip story shows the opposite—someone who has gone from being ill to being superhuman. In the first case, the pitiable person needs charity, and in the second case, the person needs nothing.
People with impairments have tried for many years
(mostly without success) to change the focus of these stories. In recent years,
new demands have arisen relating to other aspects of portrayals. One set,
related to a lack of realism or stereotyping, has to do with the memorial
constructed to honor Franklin Delano Roosevelt. Although Roosevelt hid his
impairment from the public, apparently mostly with success, some people with
impairments want him to be portrayed realistically, so that his wheelchair shows
in at least one of the several statues being constructed for this monument (In
2000, before President Clinton left office, he made sure this demand was met by
adding one more statue to the monument.)