Sunday, November 19, 2006

The non-autistics only fountain in Canada's Senate

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.


jypsy said...

"The Committee (the Standing Committee on Social Affairs, Science and Technology)also believes that further discussions absolutely require the input of people living with autism"

From a letter to me from Senator Catherine Callbeck

Brackets and emphasis is mine.

jypsy said...

..*are* mine..

kristina said...

Have you sent this post to all the organizations mentioned?

Michelle Dawson said...

Hi Kristina, I've already lost battles with ASC, the CIHR, as well as all the government people (health minister, ODI, etc), about this issue. A lot of this is documented on my website. Also, CAIRN's administrator told me (over the phone) that I sounded too intelligent to be autistic.

Anonymous said...

Also, CAIRN's administrator told me (over the phone) that I sounded too intelligent to be autistic.

That person sounds too ignorant of autism to be an administrator of CAIRN.

Anonymous said...

I do not live in Canada and cannot speak on laws or views or expectations in Canada. But here in the states, I do not see trying to help these children through medical or behavioral protocols, or searching for the cause and cure, as genocide. And to say so is so totally stupid, for lack of a better word. You may be able to function, obviously you do, you can write on this blog and you can take parents to court when they are trying to help their children (if I understood that correctly). But what about these 2, 3, 4, 5, 8, 13,etc. year old's, who, at this point will NEVER be able to that without some sort of intervention. You are totally blowing this words out of the water by adding your own little screwy spin to them. I think it is insulting to all people with ASD that you would insist that a gov't trying to provide services, help, medical care, whatever, as the gov't trying to make autistic absolete. That is just so far fetched, I mean really. As I read this and re-read this I tried to figure out where you were getting some of these words from what you quote. And I finally gathered, you aren't getting them from the words you quoted, you are getting them from your messed up head based on how you preceive those words to be.

The fact that the gov't is trying to help these children, and maybe some adults, does not under any circumstances mean that the gov't is trying to find a cure or make all austistics NT by medical or ABA ways at all. It doesn't mean that the gov't is trying to do away with autistic people.

Come on, you surely have better sense than that. The gov't is trying to better the lives of the autistic kids so that they can function in this society. Yes, I believe that society should be held accountable for some of that chagne too.

But you are just so off with what you claim the Canadian gov't is trying to do, based on what you have cited above. You show me some citations where the gov't is saying they are practicing genocide of autistic people, or they are striving for the perfect society and then maybe I'll believe you. But based on what you have provided, I can only conclude that you are getting off on spinning the words of the gov't. Only my opinion, but I so disagree with you.

Michelle Dawson said...

I'm arriving late (because I didn't notice this message before), but Anonymous is going to have to show me where I've used the word "genocide".

Also, I don't know why Anonymous believes that it's good for autistics to be excluded, and why s/he's so opposed to my effort to have autistics included as equals.

Anonymous also seems to believe that it's wrong for me to oppose Jim Munson's anti-scientific and unethical view that autistics are sick and just naturally belong in institutions.

My position is that no autistic person belongs in institutions. Institutions harm us, and those who demand that we be put in institutions are harming us. Also, I think that autistics deserve high standards of science, ethics and advocacy. I don't think basing decisions about us on anti-scientific and pejorative statments like Senator Munson's is good for us.

More generally, spreading false, anti-scientific and pejorative information about autistic people does not help autistic people, of any age. Making public policy decisions about autistics based on this false, anti-scientific and pejorative information does not help autistic people, of any age.

There's a way to guarantee that a group of people has poor outcomes, regardless of their abilities. You spread a lot of false, pejorative information about them, as has been done to autistics by autism advocates (including political leaders). And you exclude them from having any influence on the major decisions made about them, as has been done to autistics by autism advocates (including political leaders).

The current Conservative government directly states their goal that autism should be prevented. This is on the official Health Canada autism webpage which was introduced with great fanfare (press release, press conference, media stories, etc). The other major federal political parties have also stated their ideal that autism should be prevented, including on the record in the House of Commons. I've provided the links and direct quotes elsewhere on this blog.