8:19pm October 30, 2013

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Our visible presence at the 1991 conference, and the obvious interest many parents had in meeting us, drew the attention of the ASA Board of Directors. Two of us were approached by a Board member and some other parents, and asked if we would like the Board to help us form a committee that would be advisory to the Board and would have some input into ASA and its future conferences. We accepted on the spot. We were told that our committee would be allowed to have a representative present at ASA Board meetings; would have some input into planning the 1992 national conference (both in the organization of facilities to be accessible to autistic people, and in the selection of presentations); and would be given space in the ASA newsletter. In addition, when we told them that we were already working on forming an organization of our own, they offered us some unspecified amount of financial and/or administrative support for creating our own autistic self-advocacy organization.

None of these promises was honored. The only mention the ASA newsletter carried of our attempts at autistic self-advocacy was an item in the précis of the July 1991 Board meeting, authorizing one of the Board members to take charge of organizing an advisory committee of autistic people–and we never heard from them again about that committee, despite several follow-up phone calls I made. One of the ASA Board members later confirmed my suspicion that these offers were merely empty gestures by a Board that wanted to impress parents of autistic people–who hold most of the voting power in ASA–but who didn’t expect to have to follow through because they never expected autistic people to be capable of organizing ourselves.

When, contrary to expectations, we did begin organizing ourselves and announced the establishment of ANI, ASA continued to ignore the announcements we repeatedly submitted for inclusion in the newsletter. But now there did begin to be some acknowledgment of the existence of autistic people trying to self-advocate, in the form of rumors started by some ASA Board members to the effect that I was not really autistic. (This despite of the fact that my records had been reviewed by two psychologists who were members of the ASA professional advisory board, and both had stated–one of them under oath at a rehabilitation services hearing–that I am indeed autistic.) In a clear attempt to undermine our group cohesion, Kathy and some other autistic adults were directly “warned” that I was not what I claimed to be. Meanwhile, Donna was encountering similar denunciations as her book began to receive international attention.

Contexts and politics of opposition to self-advocacy

At the time all this was happening, it took me completely by surprise. Nearly all of us who were involved in the earliest period of ANI had met many parents of autistic children, at conferences and local parent support groups. Almost invariably, the parents were pleased and excited to hear from us. True, their primary interest was in using us as resources for their children rather than supporting us in our own goals; but still, they were not hostile toward us. It seems that one autistic person at a time–and preferably a passive one–might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight. But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals–suddenly we were perceived as a threat.

Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996). Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:

1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership. This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.

2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole. Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:

When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different category and saying that I don’t have any right to speak. It upsets me because I take it that they don’t want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven’t had the opportunities to experience different situations in life. (Kennedy, 1996)

3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them. Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.
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Jim Sinclair, Autism Network International: The Development of a Community and its Culture

This is how far back attempts to discredit prominent autistic activists go – all the way back to the beginnings of large organizations of autistic activists. This is not new, this is not specific to any particular person, this does not happen because we have actually done anything wrong. As Jim tells it, people intentionally dug up strange-but-true things about xyr life and used them to try to claim xe wasn’t autistic – same with Donna. In Jim’s case, one of the people who slandered xem was the same person who had testified under oath that xe was autistic, in another context. In Donna’s case, some of the people had never actually met her (one had her confused with someone else), others were former bullies looking for a new way to hurt her, and others had only met her in the most limited context possible, and it was all organized by a former teacher who had bullied her and made horribly inappropriate sexual comments about her.