Thursday, December 21, 2006

The Senate's thematic study on autism

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.


Anonymous said...

I have little time to read and even less time to comment on so much that is blogged about autism. But I think that what you are doing is so important.

Thank you for everything you do. I find it so hard to believe that the authorities in Canada are so ignorant of the facts about autism but they are. Do you get any support from people like Eric Fombonne?

Anonymous said...

Michelle - no surprise here, but Best has hit out at your posting here. I gave it to him about Canada abandoning thiomersal in 1994 and the DX rate not decreasing in spite of that. The man is a joke, and loves to bully people. The sooner his blog is removed the better - it's abuses of the first amendment like that which make things harder for people like you, me and every other adult ASD sufferer to get the real help we need to cope with everyday life.

Michelle Dawson said...

Hi Mike,

Thanks. Doesn't look like there's been a lot of progress though. Canada is very officially (at every level, political, legal, etc.) a society that's entirely hostile to autistics. And becoming more hostile, at the proverbial "alarming rate".

The ignorance of autism among our political leaders is a tribute to the lobbying of autism advocates, who deliberately spread ignorance (along with fear, dread, etc.) of autism wherever they go.

Re people like Eric Fombonne, that's a complicated question.

Dr Fombonne is involved in CAIRN (and works with the other CAIRN researchers), and CAIRN would be entirely opposed to my work and so far as I can tell, my existence.

Dr Fombonne has also cited a paper I contributed to, so these things maybe aren't entirely absolute.

But I'm certain that the general direction of my work--working towards a society where autistics get what we need in order to succeed as autistics--is totally rejected by Dr Fombonne and his CAIRN colleagues (Peter Szatmari, Lonnie Zwaigenbaum, Susan Bryson, etc.).

Michelle Dawson said...

Hi Timelord,

I still find it "offensive and inappropriate" (in the words of the Canadian Down Syndrome Society) to describe autistics as "suffering" from or being "sufferers" of autism.

There is no first amendment in Canada.

Anonymous said...

Michelle, like I explained before - the suffering comes from the way we're treated. You can't tell me you aren't suffering right now because of this nonsense from Ottawa. I take your point, but I'm just explaining mine again.

And when I mentioned the first amendment - I was referring to the US. We don't have it in Australia either - thank goodness!

Free Speaker said...

Greetings Michelle.

I was "referred" here by John Best. I read his recent comments on your activities, and felt that anyone who can motivate John to such levels of spittle spewing has got to be worth reading. You could have no finer endorsement.

As an advocate in other areas of disability related matters, I highly respect and admire your efforts. While the Senate's actions are blatant discrimination, do not think for a moment that people with other disabilities are not treated in similar manners. One group, wheelchair users, have to contend with barriers that should have been removed years ago. New construction in my neighborhood violates the access rules of the ADA.

To one point I thought that Best could be lead to a clue, but no one could make him think. Now I realize that best has been immunized to prevent him from getting a clue. He is really a vile person.

Anonymous said...

I agree with The Probe. Obviously John is very much threatened by you, by Kathleen and all of the Autism Hub. Keep up the good work.

Anonymous said...

Timelord said:

"And when I mentioned the first amendment - I was referring to the US. We don't have it in Australia either - thank goodness!"

Of all the amendments in the US constitution, it is the first I agree with most. It can not technically be 'abused' because there are no conditions under which it can be wrong: if a person is expressing any kind of idea, it's in the remit. For it to be abused you would have to first take away someone's right to be wrong, but everyone has that right.

If someone is wrong, expressing it will eventually work against them. It's like giving them a verbal loaded-gun; they'll shoot themselves.

It may seem ok to restrict the right of free expression when their views are unpopular, but then what happens when you are the one with the unpopular view?

You have to keep a bedrock value to maintain a moral high-ground, even if it means you have to put up with ideas you don't like.

I think Michelle has a very strong morale advantage because of her consistency in the standards she upholds for others even if they don't return the courtesy. It's all on the record and history will look dispassionately and accurately and conclude she was morally in the right about a lot of things. The great thing about recorded history is that while things can be ignored while they're happening, they usually aren't ignored forever.

Anonymous said...

Well said, Probe and Joseph. I'll just add with regard to Best that you pretty much revealed why he is so dangerous.

Lucas, I agree with your premise - but there's something you are missing. What the first amendment can and has led to in the short term. Violence. That's why I call things like Best's blog an abuse of the first amendment - because he is creating instant angst that the premise you spoke of doesn't grab until it's too late.

You take 9/11 for example. Now I'm not saying that was justified by first amendment abuses. Heck no! But I am saying it was caused by it. See my point? People just don't care about the consequences, and when the short term consequences hit they complain - and because of the first amendment the reactors are the ones that get into trouble. Rightly (in the case of 9/11) or wrongly.

That's why I don't like the first amendment.

Michelle Dawson said...

Thanks, t.h.e. Probe, Joseph, and Lucas.

For t.h.e. Probe, the situation in autism is unusual because autism advocates--including the powerful and influential organizations and individuals who claim to represent all autistics--advocate against the accommodation and inclusion of autistics. They advocate against our having even the most basic human rights, or any place in society. And they have lobbied so successfully that our governments (federal and provincial) and opposition parties (ditto) are in complete agreement. They are autism advocates too.

Autism advocacy has also been embraced by Canada's disability community and by our major human rights lawyers. They have unquestioningly supported FEAT and FEAT-like groups, and they never object or even blink when FEAT says that autistics must be institutionalized, live in restraints, and have our teeth pulled.

Anonymous said...

Michelle, after reading that I think it's about time you took this up with the United Nations. Really, this is eugenics at it's worst, and as far as I'm concerned that's up there with the antics of Hussein and Milosevic.

I'd do it myself, but as I'm not Canadian they won't pay any attention to me. Anyway, you seem to have your finger on the sort of information they would need to back up your statements - and I don't.

You'd be doing not just Canada a favour - but the world with such a precedent.

Anonymous said...

John Best couldn't stoop any lower than he has and he's just so obviously jealous of your intelligence and the fact that so many people admire what you are doing. Maybe the Canadian senate and Dr. Fombonne et al, don't but I contend that there are a few dozen people, at least, who think you are amazing and hope desperately that the Canadian gov't will get a clue about autism and stop listening to the FEAT and ASC bunch and the rest of the autism calamity howlers.

What John Best Jr is doing will catch up with him.

Anonymous said...

Further in my views on free-speech...

The case of 9/11 doesn't exactly fit the bill as an example of abuse of free-speech.

Soliciting, inciting or conspiracy to murder or similiar acts is not free-speech, hence doing these things are not an abuse of free-speech because they are not protected by the idea.

They're not protected because they are but one degree removed from the act itself. It's wedded to the action directly.

That's all I can say because I don't fully understand what you're saying; the First Amendment is an United States statute and to my knowledge there wasn't anything said publicly or published under it's jurisdiction that could have led to 9/11 that I know of.

The doctrine that those involved followed was concieved in the middle-east, in countries where the right to say what you want is restricted and you can't object to the official line which often states that western countries are an aggressive enemy.

Jonsmum said...
This comment has been removed by a blog administrator.
Anonymous said...
This comment has been removed by a blog administrator.
Michelle Dawson said...

I originally left Jonsmum's comment in place, because while it's the kind of non-contributing comment I'd like to discourage, I hoped that visitors here would either ignore it or respond to it in a rational, mature way.

This didn't happen, and I had to take down Timelord's response, and to prevent more of the same, I've taken down Jonsmum's post.

There are blogs where throwing invective and insults back and forth is the norm, and apparently some people have time for this. This isn't that kind of blog, and there are autistics and non-autistics who don't have time for gratuitous name-calling and other prominent aspects of the public discourse about autism.

I'm particularly short of time, and I'm not going to take a whole lot of it trying to explain to adults how to behave in public.

As is written somewhere on this blog, I believe autistics deserve better. If you believe that all autistics deserve is exchanges of insults and name-calling, you can find any number of places where your comments will be welcomed. But if you post them here, they may not stay up.

Genuine criticism and multiple viewpoints are welcome, as was and is the tradition on the TMoB board. But if you have nothing to contribute except evidence of your own low standards, you are much better off commenting elsewhere.

Jonsmum said...
This comment has been removed by a blog administrator.
Michelle Dawson said...

Re Jonsmum's latest being taken down, see my previous comment.

Anonymous said...

Michelle, I want to again apologise as I did on the message you deleted (which was the correct decision). I just want to explain why I posted. The remarks were a direct attack on me and contained a number of lies which I felt required an answer where they were posted. As I don't post on Best's blog anymore and reserve comments from there to my own new blog (which I'll let them find for themselves) that wasn't the place to respond - as you appeared to insinuate (you are welcome to correct me if I can wrong about that).

I hope you understand, and it certainly wasn't my intention to disrupt your blog. If you are interested, just throw "The Time Capsule" (the name of my blog) into a search engine and see what comes up.

I'll repeat this because the commetn was deleted - have a merry Christmas.

Anonymous said...

I missed the post from Lucas because of the distraction of the stuff that has been deleted.

"Soliciting, inciting or conspiracy to murder or similiar acts is not free-speech, hence doing these things are not an abuse of free-speech because they are not protected by the idea."

That's the point. Those who were responsible for 9/11 saw what people like Bush and other people in authority do precisely that. Soliciting, inciting and conspiring to murder cultures and societies unlike their own. I've always said the Yanks were a law unto themselves. For example (and this was after 9/11 I'll admit but this is the sort of nonsense I'm talking about) Bush adding North Korea to the so called axis of evil. They rightly took offence to that and we've been struggling to get North Korea back to the table ever since. North Korea saw that remark as a threat. Personally I thought it was diplomatically careless in the extreme.

My point is that for many many years those countries have watched their own cultures be systematically destroyed by that of the west. Even cultures in the western world are going American (including Australia) and I for one don't like it. It's cultural murder. I'm not sure but Canada could also be a victim of this.

"the First Amendment is an United States statute and to my knowledge there wasn't anything said publicly or published under it's jurisdiction that could have led to 9/11 that I know of."

Well there was plenty - over a long period of time (as alluded to above).

"The doctrine that those involved followed was concieved in the middle-east, in countries where the right to say what you want is restricted and you can't object to the official line which often states that western countries are an aggressive enemy."

This is correct. But what annoys me is that the Yanks are shoving this fact down their throats in such a way that they feel threatened rather than encouraged. It solifies the belief in censorship by many (including myself) because there is no diplomacy being used and no tolerance for special problems that are going to take time to resolve. The biggest hold back is religion. I am personaly of the opinion that if we got rid of religion lock stock and barrel we would solve a lot of problems. It won't happen overnight because of the extremists that exist on both sides and as long as they continue to fight it will remain an issue.

I prefer a limited form of censorship. Not the middle eastern version of course (that's going too far and harks towards a dictatorship), but a version that strongly and appropriately penalises those who make objectionable remarks that create anger and anxiety. The minute one ignores the anger and the anxiety one is just asking for trouble.

Michelle Dawson said...

If you want to have a discussion about American foreign policy, etc., I suggest you do so in a forum where this isn't quite so entirely off-topic.


Anonymous said...
This comment has been removed by a blog administrator.
Michelle Dawson said...

Re Timelord being deleted again, see my 9:37 PM comment.

Anonymous said...

t.h.e.probe said:

"I was "referred" here by John Best. I read his recent comments on your activities, and felt that anyone who can motivate John to such levels of spittle spewing has got to be worth reading. You could have no finer endorsement."

Yes, I agree with your estimate of JB's motivation, but I'd like to have a go at that finer endorsement. I would compare Michelle with Alice Paul, the women's suffragist who did the most to get the 19th amendment passed. She was much-hated, and often jailed, but she won in the end because she was RIGHT, and History often repeats itself.