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...And Please Explain Why It's Right to Disrespect Autistics
Either Folly or Sheer Prejudice: A Rejoinder by W.K. Dawson
AUTISM-RELATED MINISTERIAL SHRUG...
2004 July 19
Dear Ms Dawson:
Thank you for your subsequent correspondence of April 1, 20004, concerning the representation of persons with autism spectrum disorders (ASD) at a workshop held in October 2002. As you know, your father has also contacted me on this issue.
Your views have been carefully noted, and I appreciate the opportunity to comment further. I regret to inform you, however, that the Government of Canada would not have been able to intervene in the workshop arrangements. As you may be aware, a report of the workshop’s outcome has since been published, and is available on ASC’s Web site at www.autismsocietycanada.ca/en/whats_new.html.
The priority in the research agenda, which emerged from the workshop, is "improving outcomes for people with autism spectrum disorders". It is important that all stakeholders, including persons with ASD, provide their comments to the Autism Society of Canada (ASC) and the Canadian Institutes of Health Research (CIHR) about the proposed research agenda. Since you have already been in contact with Dr. Rémi Quirion, you may wish to reiterate your comments to the CIHR, and in the event that you have not already done so, to the ASC at:
P.O. Box 22017
Ottawa, Ontario K1V 0C0
Again, thank you for writing, and please accept my best wishes.
Pierre S. Pettigrew
c.c.: Mr W. K.
...AND PLEASE EXPLAIN WHY IT’S RIGHT TO DISRESPECT AUTISTICS
2004 July 29
The Hon. Ujjal
This is further to former Health Minister Pierre Pettigrew’s letter of 19 July, 2004, which in turn was a response to my own letter of April 1, 2004. I thank your predecessor for his letter, and I notice he has suggested a role for me and other autistic Canadians. However, he has evaded my long-standing questions. As well, his suggested role and his account of the facts need scrutiny.
Also, the Government of Canada is able, in fact obliged, to exercise leadership when public money is spent. The Canadian Institutes of Health Research (CIHR) is a wonderful organization which does a great deal of good, but it is no more immune from making serious errors than other organizations or individuals. For this reason, it is accountable to the Minister of Health. Since the CIHR has chosen not to mitigate in any way whatsoever the harmful consequences of their workshop, accountability is called for. A failure on the part of the Minister clearly to express disappointment in and disapproval of the CIHR’s actions in this case constitutes a powerful message to autistics: the rights and respect universally enjoyed by other Canadians are not for us.
What I still don’t know is why. Why were autistics singled out and excluded, when so much for us was at stake? Autistics and no one else—not, for example, non-autistic homosexuals, or Jewish people, or paraplegics, or francophones—were specifically rejected. No one has yet told me why, and why it is legal, acceptable, even laudable to banish autistics, while banishing homosexuals, or Jewish people, or paraplegics, or francophones would obviously violate principles and laws at the heart of Canadian society.
When I asked ASC and CIHR about our being exiled while non-autistics planned our future, I was instructed that this was a research conference, meaning that autistics, who are known to be neurologically defective and disordered, would find it incomprehensible and irrelevant.
Since this declaration was made in front of the Government of Canada, which was pleased to attend, and which has yet to object, why should these organizations change?
Dr Bisby has not answered my question either. Instead, in his letter, he states that ASC, with which CIHR continues to partner, is a "representative" organization when it comes to autism. ASC has officially been described by Deborah Tunis, Director General of the Office for Disability Issues (which funds ASC), as a group of parents of young autistic children who are trying to get early interventions for these children. As I documented in my letter to your predecessor, ASC refuses meaningfully to include autistic people, and actively demeans us at every official opportunity. The CIHR continues to accept that a "representative" organization in the area of autism is one which excludes autistic people.
The CIHR also partners with NAAR (National Alliance for Autism Research), an American funding body which has no autistic participation. For example, while NAAR admirably has a lay ethics committee, there are no autistic people on this committee. NAAR’s aim, as reported on CIHR’s website, is to cure or prevent autism. Few autistic people see our essential characteristics as defective appendages requiring medical treatment or amputation; and the goal of eradicating autism from society and from the human genetic heritage is no more scientifically or ethically valid than a goal of eradicating homosexuality.
And few autistic people see ourselves as a plague, or a staggering/skyrocketing/dramatic/tragic epidemic/crisis, as we have repeatedly been described by ASC. We have objected strongly to ASC’s policy of promoting autism and autistic people as being terrifying and catastrophic, and we have been ignored. ASC was forwarded my reaction to the fanfare surrounding the release of the White Paper (enclosed), and has neither responded, nor refrained from misrepresenting the workshop and the White Paper on its website and in its legal and other official representations.
But this situation involves autistic people. Somehow, autistics are less than human in that we are not supposed to have emotions or interests, or to experience pain or consequences when we are officially banished. Somehow what would be outrageous treatment for any other group is acceptable and praiseworthy when applied to autistics. The adverse treatment of a group of people based on their differences is defined in Canada as a violation of human rights.
The question remains, why were autistics excluded? Do you approve of our exclusion? Do you see a leadership role for the Minister of Health in this situation, which persists unresolved because it is bereft of leadership? Leadership would be a positive act of affirming the essential participation of autistics in all decisions which concern us, and an equally positive act of rejecting, as harmful and invalid, pronouncements and proposals issuing from acts of ostracism.
My search for leadership now extends to a letter to Prime Minister Paul Martin (enclosed). I’ve been informed that the relevant named ministers—yourself included—will give my views "every consideration". I have been given, by your government, every reason to disbelieve that statement, and wish not to be given another one.
Your predecessor has assured me that all the non-autistics who were allowed to participate in the autism workshop have as a priority "improving outcomes for people with autism spectrum disorders". At the same time, these non-autistics who met and decided what an "improved outcome" is, and how it should be achieved, denied our worth and barred us from the proceedings. I don’t think intolerance and segregation are valid foundations for "improving outcomes", and I can’t believe you do either.
Thank you for your time.
|This letter was received and signed for by Health Minister Ujjal Dosanjh’s office on the morning of July 30, 2004|
EITHER FOLLY OR SHEER PREJUDICE: A REJOINDER BY W.K. DAWSON
2004 Aug 3
The Hon. Ujjal
In a March 25, 2004 letter to my autistic daughter, Michelle Dawson, your predecessor, the Honourable Pierre Pettigrew, expressed his appreciation of the "profound impact" her disability would cause her family. In view of this I felt it was appropriate to let him know the exact nature of this "profound impact" and did so on March 31. Rather than replying directly to me, the Minister simply sent a copy of a letter to my daughter. Apart from getting a ministerial brush-off, a target of "faire d'une pierre deux coups", my name was misspelled in the cc list, the city of Vancouver was misspelled on the envelope, and the return address on the envelope stated he was, among other things, "Minister of Intergouvernemental Affairs." Such low standards of basic courtesy and accuracy on the part of Health Ministry staff may explain the many needless difficulties citizens now have to endure. I hope it is fair to assume that these poor standards, more fully manifested in the inadequate and discourteous responses generated by this Ministry so far, do not reflect your own.
In my letter I asked a simple question: Why were autistics not invited to participate in a meaningful way in the Autism Society Canada and Canadian Institutes of Health Research Workshop on autism during which a national autism research agenda was developed? Both organizations receive government support. Therefore their actions must be interpreted as reflecting government policy, one that approves the exclusion of autistics from all discussions of their fate. If this is not government policy then obvious actions are called for. For example, the White Paper generated at the autistic-free Workshop should be declared incomplete until the autistics themselves have had a chance to read it carefully and discuss it among themselves and as equals with the non-autistics who generated the first version. It is possible that autistics will find things that they like and their approval can only enhance the stature and worth of the paper. It is also likely they will find recommendations that go completely against their knowledge of autism from the inside, a viewpoint and privilege denied to all others. There are many brilliant, knowledgeable autistics in Canada and elsewhere. To ignore their contributions to such an important document is either folly or sheer prejudice. Your duty in this matter is clear.
When it comes to autism it is abundantly evident that only the voices of the parents of autistic people are heard. Those of the autistics themselves are shut out. Perhaps, since I am the proud parent of an autistic daughter, you will listen to me. I am not asking for expensive, special treatments. No, my request is simply that autistics be treated with the same consideration and respect as are all other Canadians with or without disabilities. What are your reasons for doing otherwise?
W.K. Dawson BScA, MA, PhD, FIEEE
cc: Michelle Dawson
|This letter was mailed to the office of Minister Dosanjh on August 3, 2004|
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