When some kinds of human beings are devalued, the people doing the devaluing often work to enshrine this devaluation in written and unwritten laws, rules, and regulations. The purpose of the rules is to make sure those lesser humans don't get in the way of the real ones. A lot of creative, meaning destructive, ways have been found to keep humans deemed to be substandard in our substandard place.
A Canadian Senate committee (the Standing Committee on Social Affairs, Science and Technology) is holding hearings about autism treatment funding, and about a national autism strategy, at the demand of Senator Jim Munson. Senator Munson equates autism with cancer and promotes the view that unless autistics get early ABA/IBI, almost all of us just naturally belong in institutions. This view is unsupported by the existing science and instead reflects Senator Munson's view of autistics as sick, substandard human beings who, unless we become much less autistic or not autistic at all, do not belong in society. Senator Munson is also one of the Senators in the Committee holding hearings to decide the future of autistics in Canada.
This committee has just decided to ban autistics from participating in the major meeting of their series of autism hearings. This is a round table meeting scheduled for December 8, 2006. The purpose of the round table is to discuss autism research in Canada. Non-autistic autism researchers and two parent organizations (which are also appearing as witnesses elsewhere in the hearings) are invited. These parent organizations are the FEAT-like Autism Society Canada and the DAN!-like Autism Canada Foundation.
Autistics have been banned before. One of the ways our leaders, our autism community leaders and our political leaders, let us know that autistics are substandard, and therefore put us in our place, is by making a rule that autistics aren't allowed to participate when autism research is being discussed. Research is a non-autistics only water fountain. Autistics have a separate, unequal water fountain down the hall, a place where research is never discussed, where decisions about research are never made. We're not allowed to go near that non-autistics only fountain. It's against the rules.
The Canadian Institutes of Health Research of course agrees to ban autistics--look at their name, Canadian Institutes of Health Research, which is an automatic instruction for autistics to give up our seats. Or rather, stay away from that fountain. One of the groups listed as a witness at the Senate autism hearings is the Canadian Autism Intervention Research Network. They've banned autistics from their fancy conferences too. It's not hard--they're invitation only conferences, so they just don't invite autistics. And they have no autistics anywhere in their governance. After all, they too have Research in their name, and everyone knows that's a non-autistics only water fountain. You have to figure it was a priori guaranteed that the Canadian Autism Research Workshop, which combined Autism Society Canada--a paragon of putting autistics in our place, the CIHR, Autism Speaks (who exclude autistics automatically, as a sort of reflex), as well as some people from CAIRN, and a whole lot of government people, like the Office for Disability Issues and Health Canada, would bar autistics, except as lunch time entertainment for the important non-autistic decision-makers.
Similarly, the Senate Committee people told me that if I appear in their hearings, I can't be put with a particular group of witnesses, because these witnesses are researchers. This Committee just can't have autistics near that non-autistics only fountain. We just get in the way and mess things up, being the substandard types we are (the sick, if not cancerous, ABA/IBI-deprived autistics Senator Munson says belong in institutions). Parents, on the other hand, are autism research experts and essential contributing stakeholders by definition, so long as they're non-autistic. If you're an autistic parent, sorry, your fountain is down the hall and nowhere near anything related to research. That's the rules.
I've had it explained to me, many times, v-e-r-y s-l-o-w-l-y, that this is research, as if I only had to be told this important fact to realize how totally absurd it is to even imagine that autistics would have anything to contribute or anything at stake. The decision-makers I've spoken with have been utterly baffled when I didn't fold up and skitter away in abject shame when they said that magic word, research, the one supposed to make all autistics disappear instantly.
This Senate Committee claims they'll have a few autistic witnesses in their hearings, all at a safe distance from that non-autistics only fountain, though none has yet appeared and none is yet in the published schedule. Indeed, on one day next week, they have a full slate of six autism organizations (including one which isn't an autism organization but pretends to be), none of which is represented by an autistic person.
In a their previous report (warning, big pdf), this very same Senate Committee wrote:
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.
Full and equal? Excuse me Senators, but you've banned us, on the grounds that we don't belong at the table when major and crucial decisions about us--decisions about autism research--are being hammered out.
I've raised a ruckus about this. I don't see a lot of issues a whole lot more important than the "full and equal" participation of autistics in discussions and decisions about research priority, policy, and design. Right now, very nearly one hundred per cent of these discussions and decisions are happening with zero per cent autistic input. And now our political leaders in the Canadian Senate have banned us again. Shame on them, for perpetuating grossly prejudicial stereotypes about autistics and autism research. Shame on them, for seeing us as unwanted impediments to the important non-autistic people they welcome to sit at the round table and decide our future. Shame on them, for refusing to see us as essential contributors, both to society and to any discussion about autism research. Shame on them, for refusing to see us as human beings who live and suffer the consequences of decisions made about us in our absence. Etc. Shame, shame, shame.