As I pointed out here a bit earlier, the Canadian Senate Standing Committee on Social Affairs, Science and Technology made this statement in a report they issued in 2005:
In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion.
That "thematic study on autism" has now taken place in a series of hearings, with a report due in May, 2007. I tried to ask for two things in these hearings, and indeed, some themes emerged.
Previous hearings were used by autism advocates as a platform from which to denigrate and dehumanize autistics (see this and this). I asked the Senators to apply at least minimal standards to their autism hearings, so that autistics would not again be dehumanized and therefore harmed.
This was totally rejected. I was told that all views of autistic people were welcome, no matter how dehumanizing. There was no indication that this Committee saw dehumanization as being harmful to autistics. Perhaps they had already decided that if autistics are dehumanized, this is because we are in fact less than human. In any case, even a superficial glance through the transcripts in the Senate autism hearings shows that living, healthy, present autistics have been described, without protest, as bleeding to death, kidnapped, and dead. Autistics have been repeatedly portrayed as just naturally being violent because we're autistic, as appalling burdens, etc.
Unsurprisingly, in the final hearing on December 8 (a hearing supposedly dedicated to autism research), one Senator asked a non-autistic witness about the problem (which made this Senator "sadder than I already have been") that autistics ("those who suffer from this disability") don't feel anything. We don't experience happiness or pain. This was a Senator asking a non-autistic about an assumption the Senator had made--that autistics aren't sentient, or human.
The second thing I asked was for the Senators to live up to what they wrote in 2005, and to include autistics in these hearings as "full and equal partners". Instead, the Senators banned autistics from the most important hearing of the series, the big round table meeting about autism research.
I spent some time trying to persuade the Senators that they should reconsider. This also was totally rejected.
Their decision to ban autistics from discussions and decisions about autism research, like their decision that the dehumanization of autistics is welcome, is a major consequence of these hearings. Autistics have been banned before. Efforts were made to change this. Now the Senate has weighed in and showed all Canadians that autistics really should be banned. And if we're dehumanized too, that's also just fine. That's how autistics should be treated in Canada.
Canada's Senators have told autistics to stay away from autism research, to forget about even considering that we have anything to say about our future (a future which is overwhelmingly determined by autism research), and to leave the major decisions about us in the hands of non-autistics. They've told autistics we should never, ever question this.
And the Senators refuse to explain why autistics were banned. Senator Art Eggleton's office promised to send a letter with an explanation. This promise was no less empty than the Senators' promise to recognize autistics as "full and equal partners".
According to Senator Eggleton, speaking at the autistic-free round table about autism research, the Senators asked Rémi Quirion from the Canadian Institutes of Health Research to decide who should attend this meeting. The CIHR, and Dr Quirion himself, have previously united with Autism Society Canada, Autism Speaks (NAAR, at the time), the Canadian Autism Intervention Research Network and others, to ban autistics from all discussions and decisions about autism research in Canada.
Dr Quirion and the CIHR, and ASC, Autism Speaks and CAIRN, have never apologized for this, or indicated that they may have made an error, or explained why they decided to ban autistics. Instead, they continue to maintain that while autistics deserve to be banned, we don't deserve an explanation. Canada's Senators have just repeated the same process and made the same decisions, with all their considerable authority: autistics should be banned, and we aren't worth the bother of an explanation.
Meanwhile, non-autistic parents are as always invited, always considered expert, always welcome, and always taken very seriously. It would be unthinkable to ban non-autistic parents. This would make headlines. There would be demonstrations. There would be outraged editorials. Same thing if non-autistic parents were dehumanized, or portrayed as just naturally being violent, as autistics have been in these hearings. Heads would roll. You would never hear the end of it. Etc.
At the December 8 meeting, Senator Eggleton, the Committee Chairperson, indicated sternly that the Senators had invited quite enough autistics already. Clearly, having us at the round table with the 16 invited non-autistics (parents, parent-run organizations, family members, and researchers) would have been downright excessive, and surely outlandish, by the standards of our Senators.
Of the 48 witnesses who appeared in the Senate autism hearings, 5 were autistics (most hand-picked by organizations overwhelmingly run by and for non-autistics), and 43 were non-autistics.
Of the 12 sessions, non-autistics appeared in 10, and autistics appeared in 2. Non-autistic parents and/or parent-run groups (16 witnesses) appeared in 7 sessions. None of the many groups which appeared had any meaningful participation by autistics, and most had none at all. Groups that actively ban autistics, including by denying that autistics who communicate are autistic, were welcomed with open arms (e.g., Autism Speaks, the CIHR, CAIRN, FEAT), as was ASC, which has recently banned autistics, and having been required to appear to include autistics, has built a supervised autistic ghetto.
Of the 48 witnesses, ASC had at least 8 witnesses, CAIRN had at least 6 witnesses, FEAT had at least 4, and Autism Speaks had at least 2. The CIHR appreared, as did the Office for Disability Issues and Health Canada--all government organizations that have banned autistics, and of course, the CIHR was welcomed by the Senate to help the Senate ban us again.
I'm afraid I (outlandishly) suggested that groups that ban autistics--or, like ASC, confine autistics to a small, supervised hand-picked powerless ghetto--should no more be given a platform by the Senate than would groups that ban Jews or black people or people in wheelchairs (or confine these groups to a small, supervised hand-picked powerless ghetto) while claiming to represent them, but of course this was rejected before I was even done saying it. Banning autistics is fine with this Senate Committee. They did it themselves.
As happened in the previous set of hearings, I was not permitted to testify under my affiliation, and was required to appear as an individual. That is, the Senate refused to recognize that an autistic is a research associate affiliated with a research group, even though all correspondence was signed with my affiliation, and I requested to appear under my affiliation (and was also recommended as a witness by the research group I'm affiliated with). Since all the non-autistics who testified were permitted to use their affiliations (even when identifying themselves as parents or family members), I have to conclude that the persistent refusal of the Senators to recognized my affiliation is related to my diagnosis, and to the prejudices these Senators are promoting in their "thematic study on autism", including that autistics should not in any way be considered as equals, and that we have nothing to contribute to autism research.
