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"I Am Certain That the Ministers Will Give Your Views Every Consideration"
AUTISM AND OSTRACISM IN PAUL
2004 July 22
The Rt. Hon. Paul Martin
Dear Prime Minister:
I've now been advised several times to write you, following the responses I've received from your government. Many ministers (and more to come) and various evolving ministries and departments have been involved as well as a directorate and a director general. My concerns are about autism, but they are not the concerns which typically have occupied headlines and, via form letters, have filled the inboxes of provincial and federal government leaders.
My letter will not claim that without one particular autism treatment autistic people are doomed. Nor will I claim that if governments do not fund this treatment, autistics will destroy the economy by becoming the expensive burdens autistics just naturally are unless their devastating defects are medically rectified.
I am a diagnosed autistic and my letter is about the denigration and exclusion of autistic people in Canada.
I'm affiliated with an internationally-respected autism research group in Montréal. Also I was accepted by the Supreme Court of Canada as an individual intervener in the recently-heard Auton case, in which Canada's health care system was argued to be in peril. The Attorney General of Canada intervened as did most of the provincial Attorneys General.
But Auton is really about the rights, place, and treatment of autistic Canadians (please see http://www.sentex.net/~nexus23/naa_sup.html, http://www.sentex.net/~nexus23/naa_fac.html, and http://www.sentex.net/~nexus23/naa_wro.html). Neither party--the parents and the BC government--wanted even one autistic person to have a voice in this case. The sole representation from an autistic in Auton--my intervention--was allowed by the Supreme Court over the objections of both parties. In the absence of autistics, the earlier proceedings had concluded that the essential characteristics of people like me are equivalent to cancer or AIDS and must arduously and expensively be uprooted and vanquished. If autistic traits are not successfully eradicated, it was judged, people like me just naturally deteriorate and find our true homes in institutions.
Similar views about the worth and rights of autistic people underlie the two overlapping concerns I've brought to the attention of your government.
The first case is the funding of Autism Society Canada (ASC) by the Office for Disability Issues (ODI), a directorate under Social Development Canada. Because it has chosen to achieve its goals by excluding and denigrating autistics, ASC does not meet the stated criteria for the funding it receives. ASC is a group of non-autistic parents which has consistently misrepresented autistic people for many years now, and has excluded us from any significant decision-making.
ASC's actions were accurately described in an open letter signed by people from around the world http://www.sentex.net/~nexus23/naa_js.html . This letter has repeatedly been responded to by your government with condescension and disrespect, culminating in this statement on behalf of former Social Development Minister Liza Frulla:
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.This statement was in a letter from Deborah Tunis, the Director General of ODI, and is equivalent to describing aboriginal people as uncivilized children who don't talk right. It is every bit as false and offensive.
Ms Tunis' inadequate apology (various responses and replies are linked to the top of the open letter) further rings hollow as she continues to support exactly this view of autism by funding ASC. I met with Ms Tunis in Ottawa in June, and her position was clear. The above statement was an "error", and the error was not the content of the statement but its deployment in answer to my concerns. Ms Tunis expressed her belief that the statement came either from ASC's website or its application for funding. In any case, Ms Tunis has decided that the dissemination of this and other demeaning and damaging characterizations of autistic Canadians will continue to be applauded and funded by ODI.
When I asked Ms Tunis if she would fund an organization which treats people with Down syndrome the way ASC treats autistics, she said no.
And when I mentioned the small problem of ASC repeatedly referring to autistic people as a "plague", Ms Tunis assured me that I just didn't understand what "plague" meant. That is, were I sufficiently intelligent, I too, like Ms Tunis, would understand that "plague" is an appropriate way to describe the existence of a person like me.
My second concern has to do with the Canadian Institutes of Health Research being a major sponsor of an autism policy- and priority-setting conference from which autistics were deliberately banned. The conference was organized by ASC, which is why my two concerns overlap. All efforts to alter the course of events beforehand and mitigate the damage afterwards failed. As a result, Canada now has a widely-distributed government-funded Autism Research Agenda and Autism Strategy that is perfectly free of any input from autistics: please see http://www.sentex.net/~nexus23/naa_wp.html .
Former Health Minister Pierre Pettigrew's response perhaps was inevitable given that Health Canada informs itself about autism from ASC. He addressed my concerns by pitying me for being autistic, by commiserating with my family for being stuck with me, and by delighting in the situation described above: please see http://www.sentex.net/~nexus23/naa_pp.html .
The events and responses I have here outlined, and have also recorded on my website, prompted me to wonder if there was accountability. What does a Canadian citizen do when those making decisions about her and everyone like her exhibit such blatant prejudices--and nobody minds? What does a Canadian citizen do when her government not only funds human rights violations but commits them?
I and other autistic Canadians were struck by the immediate outrage following Jean Pelletier's "pitiful single mother" remark about Myriam Bédard. We have not only been called much worse names. ASC has taken as its mandate to make autism and autistic people very, very scary. ASC has portrayed us as endangering ourselves, our families, and the economy, and as contributing nothing at all to society unless we expensively are fixed. Autistics have been falsely characterized at every official level by ASC and its members with the force and authority of government approval.
Canada has no ombudsman. While I am starting a complaint at the Canadian Human Rights Commission, the process is at least slow and inefficient and, from experience, is likely to be derailed by the reported and investigated incompetence for which this Commission unfortunately is known. Many more "concerns" and their consequences, including irreversible consequences, will accumulate in the meantime.
I am waiting for someone in a leadership position to notice that ostracism is expensive. The price is paid in many ways. There is the loss of what people with differences can contribute to society. There is the suffering of those ostracized. There is the price of intolerance, of what happens to societies in which intolerance of human difference is officially condoned and encouraged. There is the great expense of trying to alter the unacceptable people so they will resemble the right kind of people who are not ostracized. There is the weakening and compromising of the laws and standards which are supposed to protect people from being demeaned and singled out for adverse treatment because of their differences.
I am waiting for someone in a leadership position to say one positive, accurate word about autistic people and to acknowledge our great contributions to Canada. I am waiting for someone in a leadership position to protest when prejudicial statements are made about autistic people and our worth as autistics is denied. I have been waiting all my life.
Many people told me to write to you, so I have.
Thank you for your time.
|This letter was emailed to Prime Minister Paul Martin on 22 July 2004.|
"I AM CERTAIN THAT THE MINISTERS WILL GIVE YOUR VIEWS EVERY CONSIDERATION"
28 July 2004
Dear Ms. Dawson:
On behalf of the Right Honourable Paul Martin, I would like to thank you for your e-mail, in which you raised an issue which is of interest to the Honourable Ujjal Dosanjh, Minister of Health and the Honourable Ken Dryden, Minister of Social Development. The Prime Minister always appreciates receiving mail on subjects of importance to Canadians.
Please be assured that the statements you made have been carefully reviewed. I have taken the liberty of forwarding your e-mail to the Ministers so that they too may be made aware of your comments. I am certain that the Ministers will give your views every consideration.
|For Minister Dryden's
and Extremism in Ken Dryden's Canada
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