Thursday, November 1, 2012

Changing The Odds

Adkyriolexy writes Changing The Odds on Kyriolexy

Most of the terminology commonly associated with Autism Spectrum Conditions is undeniably degrading and dehumanizing: disorder, illness, regression, disease, suffering, impairment, low-functioning, broken, damaged, confined, relegated, trapped. However, terminology associated with a “positive” view of autism can, in its own way, be equally degrading and dehumanizing: special, high-functioning, progress, milestones, angels, speaks so well, beating the odds. These are offensive for the same reason the more blatantly negative terms are offensive—they reduce autistic people to one or two characteristics, deny them the full spectrum of human traits, define them primarily by the effect they have on the non-autistic people around them, define “progress” and “functioning” by degree of similarity to neurotypical norms, and presume incompetence through the soft bigotry of low expectations.
“Beating the odds” is particularly disturbing upon closer examination. It’s rooted in the premise that most autistic people are incapable of success at anything at all, so any achievement of any autistic person is rising far above the average autistic’s capabilities—even when, statistically, it makes no sense (most autistic people learn to speak at some point in their childhoods, so an autistic child’s gaining speech is perfectly in line with the odds). Perhaps more disturbingly, the “beating the odds” narrative presents all of the obstacles to autistic success as permanent unchangeable barriers. The odds are what they are; the individual’s duty is to beat them.
Of course, by definition, we can’t all beat the odds. That’s part of the narrative, too, the competition. There are a very few “successful autistic person” slots available, and one person’s success necessarily means another person’s failure. Nevertheless, we’re supposed to keep striving for those coveted slots. Working ever harder, sparing no effort, no expense. “Beating the odds” comes to be like outrunning the dragon, with all accompanying desperation, terror, obsession. We must beat the odds.
The “beating the odds” narrative is in contrast to another narrative, one of changing the odds. While a “beating the odds” narrative casts social conditions, including vast inequality of opportunity, as immutable, perhaps even as a decree of nature, a “changing the odds” narrative views social conditions as created by, and able to be changed by, humans. The number of “successful autistic person” slots can be expanded. Obstacles and barriers to success can be reduced or eliminated. Overall resources can be distributed more evenly, such that the success of one need not necessarily involve the failure of another.
The two narratives hint at underlying differences in philosophical worldviews, which have broad implications in education, business, child-rearing, medicine, and public policy. And there’s no doubt that “beating the odds” is the prevailing narrative. Adherents are very reluctant to part from this narrative, even when it falls apart on examination. As Jessica Hagy summarized the dominant view within education, “Everyone can join the top 1% if they do well enough in school and ignore the basic math problem inherent in that idea.”
In the context of disability, the “beating the odds” and “changing the odds” narratives broadly correspond to the medical and social models of disability. The medical model presumes that social norms of behavior, external expectations, and the policies of institutions (such as schools and workplaces) are an objective standard against which a disabled person can be measured. The only hope for a disabled person is to receive sufficient medical treatment as to overcome his disability and become normal, thus beating the odds. The odds are constant; the individual is variable. The social model recognizes that institutions, attitudes, and social norms are also variable. The individual does not necessarily have to change himself to beat the odds; the odds themselves can be changed.
Why does the “beating the odds” narrative resonate so much more strongly than the alternative? Perhaps because it appeals to the competitive spirit, or perhaps because it sounds more realistic and attainable. Changing an individual seems easier than changing an institution. Perhaps people favor the supposed objectivity of standards which favor themselves. But those who are placed at a disadvantage by those standards surely have a right to question them, particularly when they violate basic math or basic logic. The essence of autism acceptance is not the sponsorship of treatments to help individual autistic people beat the odds; it is to change the odds for all autistic people. Autistics Speaking Day should be an exercise in changing the odds. Autistic voices should be the default, not the exception, in discussions of autism. For the benefit of all involved, it is well past time to advocate a change in odds of the following circumstances:
    An autistic student receiving the same quality of academic instruction as his or her neurotypical peers;
    An autistic person becoming his or her own guardian upon reaching the age of majority;
    A nonspeaking autistic person successfully communicating with others through writing, sign language, or other means of augmented communication;
    An autistic adult choosing whether, when, and with whom to undertake a romantic relationship or life partnership, and deciding the terms of such an arrangement;
    An autistic job applicant being evaluated on his or her ability to perform the tasks required, on an equal basis with neurotypical applicants;
    A spokesperson purporting to speak for the interests of autistic people being an actual autistic person;
    A panel or committee purporting to address autistic issues having an autistic majority;
    An autistic person exercising freedom of movement;
    An autistic person exercising freedom of association;
    An autistic person living where he or she chooses;
    An autistic person being happy with his or her life;
    An autistic person pursuing a career or vocation of his or her choosing;
    An autistic person being included as a fully-participating equal in a social setting;
    An autistic person speaking for him or herself.
The goal of the autistic self-advocacy movement should be to change the odds of all of these occurrences to be as close as possible to one.

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