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W. K. Dawson Addresses Pierre Pettigrew's Concerns
 

An Open Letter

NO THANK YOU, PIERRE PETTIGREW
And Please Explain Why it's Wrong to be Autistic

1 April 2004

The Hon. Pierre Pettigrew
Minister of Health
Ottawa, Ontario

Dear Minister,

I have received your letter of March 25, 2004, in response to a letter I had written to your predecessor, the Hon. Anne McLellan, in September of 2003. While I am surprised and grateful finally to have a response, you chose not to answer my concerns. Instead, like others in your government and the organizations it supports, you decided to pronounce on the worth and place of autistics in Canada.

My concerns involved the Canadian Autism Research Workshop (CARW) and how those responsible for funding and organizing it behaved towards autistics. I had sent with my September letter a copy of a letter I had written to the director of the particular Institute of the Canadian Institutes of Health Research (CIHR) most relevant to this issue.

What follows is a record of the information I provided and your response to it.


The Record: Excerpt from my letter to Dr Rémi Quirion, Scientific Director, Institute of Neurology, Mental Health and Addiction

14 July 2003

Sir:

This letter is about the Canadian Autism Research Workshop (CARW), which took place in Etobicoke in early October, 2002. The CARW was hosted by Autism Society Canada (ASC), and largely sponsored by the CIHR and a private American funding body. [...]

In view of the stated goals and importance of the CARW, I asked ASC fully to involve and include autistics in all discussions and decisions. Instead, two autistics were allowed to speak while everyone else was busy eating lunch; and when real discussions were held, and real decisions made, no autistics were consulted or even allowed in the room as witnesses. [...]

The workshop is described as the "first ever meeting to unite researchers, government officials, and [the] autism community to present [the] latest research information and develop [a] strategic plan for increasing and enhancing autism research in Canada." All those involved in this large enterprise were in apparent agreement that the only role appropriate for autistics was as entertainment. When it came to the real work of this workshop, autistics were accurately shown to be unwelcome in, and banished from, the "autism community".

I don't know who decided to exclude us, or why; but no one present objected to our exclusion or even pointed it out. Perhaps autistics have been so severely and effectively stigmatized that anything more than token, decorative participation by us would be intolerable to the non-autistics who gather to determine our future.

The White Paper arising from the CARW, according to ASC, "will be submitted to Canadian federal and provincial government officials, universities, hospitals, other national organizations" and so on. In fact, this White Paper will spread far and wide the same message as the CARW: that when it comes to discussions and decisions about autism, autistics should be left out and locked out of the room. [...]
 

The Record: Excerpt from my letter to the Hon. Anne McLellan

11 Sept 2003

Dear Minister:

Enclosed please find a letter I wrote to Dr Rémi Quirion, Scientific Director of the Institute of Neuroscience, Mental Health and Addiction, which is one of the Canadian Institutes of Health Research. My letter concerns the actions of Dr Quirion and his Institute in supporting and sponsoring a major autism conference from which autistics were effectively and publicly banned.

Dr Quirion's reply to my letter was inappropriate and condescending. It was also self-congratulatory and did not address the major issues in my letter. I've since been informed that Dr Quirion was on the committee which made the decision to exclude autistics from this conference.

I believe that if the CIHR's Institute dedicated to aboriginal health performed a similar service for aboriginal people, those involved would be held severely accountable. A CIHR-supported decision to bar aboriginal people from a major conference, including international experts, dedicated to setting policy and priorities in aboriginal health, would clearly be unacceptable.

I would like to know if you support Dr Quirion's actions and decisions. I would also like to know your own position. Either you believe that autistics belonged at this autism conference and that the injustice of our segregation needs to be rectified; or you believe that autistics did not belong there, in which case I have questions.

Why are autistics not considered intelligent and competent enough to have a voice in the decisions made about us? Why are we not even permitted to be silent witnesses while a wide array of non-autistic people decide our future? Why—when the knowledge, experience, and needs of parents are considered valuable, important and meaningful—are the knowledge, experience, and needs of autistics considered to be useless, irrelevant, and meaningless? [...]
 

The Record: Text of your response

25 Mar 2004

Dear Ms Dawson:

Thank you for your correspondence of September 11, 2003, addressed to my predecessor, the Honourable A. Anne McLellan, concerning the Canadian Autism Research Workshop, which was held in October 2002 in Etobicoke, Ontario. I regret the delay in replying.

I would like to express my sympathy to you for your struggle with autism. I appreciate how this disorder would have a profound impact on you and your family.

The Autism Society Canada (ASC) and the Canadian Institutes of Health Research (CIHR) organized the Workshop to address a need to develop a national autism research agenda. An additional responsibility of the CIHR at this workshop was to begin agreements to ensure funding to support Canadian research on Autism Spectrum Disorders (ASDs).

Subsequent to the workshop, the ASC gave the CIHR formal recommendations to reserve more funding for research into ASDs. I am pleased to inform you that, budget permitting, the CIHR will follow the recommendations.

Again, thank you for writing.

Sincerely,

Pierre S. Pettigrew


Your position can, from the record, be summarized:
 

1.  Autistics do not belong at a national-level policy- and priority-setting autism conference.
2.  In fact, if autistics are barred from such a conference, that is fine with you.
3.  So, in order to be considered qualified for being involved in making decisions about the research and treatment of autistics, one must be non-autistic.
4.  You are pleased to see that research about autistics based entirely on the beliefs and agendas of non-autistics will be funded.
5.  You believe that the appropriate response to a person identifying herself as autistic is to offer your condolences for her plight and to underline the plight of the family burdened with her existence.
6.  When an autistic asks questions about the place and participation of autistics in decisions which will have lasting consequences for us, you feel it appropriate to ignore these concerns and reply by offering your pity.

You also support the CIHR. Minister Pettigrew, so do I. But making a point of excluding autistics from autism research decisions, as the CIHR has done, is neither ethical nor productive. Autistics have unique abilities and insights which can enhance the quality and usefulness of research projects. I have the following information about the CIHR's position:
 

1.  The CIHR sees no role for autistics in autism research except as study subjects.
2.  The CIHR is happy to collaborate with organizations such as ASC and the American funding body NAAR (National Alliance for Autism Research), from which autistics are largely, or entirely, and deliberately barred from governance.
3.  Further, the CIHR has no trouble with NAAR's ultimate goal that autism be cured or prevented—in other words, that autistics be eradicated—and the CIHR has put on its own website NAAR's mission statement to this effect.
4.  The CIHR does not believe the exclusion of a group of people from all the decision-making about that group is unethical or even an ethics issue when that group is autistic.
5.  The CIHR refuses to provide autistics with information about the decisions they make about autistics, including the reasons for these decisions and who made them, and including the decision to exclude us from the CARW.

And you support ASC. ASC's position can be seen in my previous open letter, also dating to last year, to another Minister who has been succeeded. This open letter is enclosed and can also be found at http://www.sentex.net/~nexus23/naa_js.html . Here is an update:
 

1.  ASC continues to exclude and denigrate autistics.
2.  For the first time, ASC has added a list of possible autistic strengths to its website. 
3.  This list has been accompanied by no commensurate changes to the surrounding materials, such that autistics continue to be described as a tragedy, a burden, a fiscal disaster in the making, and the agents of our own destruction.
4.  ASC's token gesture is revealed to be an act of hypocrisy by their concurrent application to intervene in the Auton case at the Supreme Court, in which ASC surpasses itself in repeatedly denying the worth and humanity of autistics, and does so with the stated support of all its provincial members.
5.  Also, the application referred to above consists significantly of documents ASC has submitted to Health Canada, supposedly on behalf of autistics.
6.  In these documents, ASC insists that my and most other autistics' "life potential" cannot be realized because we were not treated when young so as to resemble non-autistics, resulting in less than 5% of us being able to proceed in mainstream life.
7.  They also describe us at length as a tragedy, responsible for our own deaths and the divorce, financial ruin, and attempted suicide of our parents.
8.  ASC also threatens, repeatedly and elaborately, that our continued existence as autistic people will result in a $60 billion hit on the economy for every year we continue to be born; this based on their fundamental policy premise that no autistic ever contributes to society unless she undergoes extensive and expensive early behaviour interventions to make her act and appear like a non-autistic.

Social Development Minister Liza Frulla, having been informed of ASC's ineligibility for its federal funding due to the facts reported in the open letter, justified this funding in a way which resonates with your own statements:
 
ASC is governed by parents and caregivers of people with autism as most individuals with Autism Spectrum Disorder (ASD) are either minors or are people who, due to their disability, are unable to speak for themselves, nor function within the social structure of a typical organization. Therefore, this classifies the organization as consumer-focused.

However, she did not offer her sympathies. Minister Pettigrew, I would like answers to the questions I asked your predecessor. I will add another question, one which I've been asking for a decade. Why, Minister, is it wrong to be autistic? 

As for your sympathies, the record above shows that I am struggling with many things. With the CIHR, with ASC, with your ministry, with your government, with intolerance, ignorance, ostracism. I admit I'm also struggling with condescension, sensationalism, misrepresentation, arrogance, and hate: all emanated by the many non-autistics who have denied the existence of my voice. But I made no mention that autism is something I struggle with, and it isn't, or to no greater extent than I struggle with my femaleness.

Your assumption that the mere fact that a person is autistic is cause to bestow on her your sympathies reveals an attitude that belongs neither in government nor in society. Minister, no thank you. I don't want your sympathies. I certainly didn't ask for them. Your sympathies are better directed towards those whose minds are crippled by prejudice. 

What I require is a credible response to my serious concerns, and I expect one to be provided promptly.

Thank you for your time.

Sincerely,
 

Michelle Dawson
Montréal, Québec
 


This letter was received and signed for by the office of Pierre Pettigrew on the morning of April 1, 2004.

W. K. DAWSON ADDRESSES PIERRE PETTIGREW’S CONCERNS
 

31 March 2004
 

The Hon. Pierre Pettigrew
Minister of Health
Ottawa, Ontario

Dear Minister:

Since, in your March 25, 2004 response to my daughter Michelle Dawson, you invoke the concept of the "profound impact" of her autism on her family, I feel compelled to say a few words about the nature and source of this impact. It's not what you or the people who write your letters may think.

Rather the impact lies in the realization that our government, now through three different ministers of the crown, continues to believe and act as though autistics do not have a rightful place in Canadian Society. You and your government have thoughtlessly fallen into the convenient trap set by various government assisted organizations that autistics have nothing worthwhile to say and, indeed, should not be heard at all. Rather the government allows, encourages and supports others, all non-autistic, to act and speak for everybody in the very diverse autistic community. A careful, open-minded examination of what these organizations say and do would rapidly show how wrong your government is. By, for example, refusing to allow autistics to attend nominally open meetings and by refusing to enter into a real dialog with all autistics these organizations show their true colours.

You write "The Autism Society Canada (ASC) and the Canadian Institutes of Health Research (CIHR) organized the Workshop to address a need to develop a national autism research agenda." Yet, and you haven't denied this, autistics were not invited to participate in developing such an agenda. Why? Would blind people be barred from an equivalent Workshop? I think not.

Her questions on this and other topics associated with the status and treatment of autistics remain unanswered and have remained unanswered for a long time. Serious, well-intentioned questions, deserve serious, open, direct and factually correct answers. Is that too much to ask of you and your government?

Yours sincerely,
 

W.K. Dawson
Vancouver, BC

cc: Michelle Dawson
 


This letter was mailed to Minister Pettigrew’s office on March 31, 2004

For Minister Pettigrew's response, please see The Autism-Related Ministerial Shrug


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