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Autistics and the Impact of Liza Frulla
LIZA FRULLA AND THE IMPACT OF AUTISM
26 April 2004
Dear Ms. Dawson:
Thank you for your letter of March 1, 2004 in which you raised concerns about the response you received on February 27, 2004 from the Department of Social Development of the funding we provide to Autism Society Canada (ASC).
The position of the Office for Disability Issues and Social Development Canada as a whole is that Canadians with disabilities should be given every opportunity to make their own choices and speak for themselves, whether it is on the subject of their personal support needs or issues related to public policy and program development. The Government of Canada has been at the forefront in helping to empower and support national organizations of people with disabilities to remove barriers that prevent Canadians from participating fully in learning, work and community life.
Each year we provide $5 million in grants to national disability organizations which are either consumer controlled or consumer focussed. These voluntary organizations, that include citizens with disabilities, their family members and other advocates, are making a real difference in the daily lives of Canadians. We could not do without them. Your correspondence has been a welcome reminder of the need for us to work with the organizations we fund to ensure that people with disabilities have a strong voice within all of them.
We take your concerns very seriously. I understand from your letter that you do not think funding should be provided to the ASC. Based on your questions, our officials have again reviewed the file and have determined that ASC is eligible under the Terms and Conditions of the Social Development Partnerships Program. I agree with this finding. I also believe that with the growing awareness of the impact of Autism Spectrum Disorders (ASD) on the lives of Canadians, we very much need organizations like ASC. I understand that ASC is the only pan-Canadian organization advocating for those with ASD. We also need to ensure that ASC is making a meaningful and concerted effort to include people with ASD in the membership and governance of their organization. Currently, all individuals are provided the opportunity to participate in the governance of ASC via membership in the provincial and territorial societies that make up the organization. Membership in these societies confers to all individuals the right to nominate, vote for and become members of the ASC Board.
I understand that ASC has new initiatives under consideration, including the creation of a special membership category that will ensure greater stakeholder participation on their Board and the implementation of formalized focus groups to gather input on priority topics. We have been assured that these initiatives and others will be developed with a particular emphasis on including people with ASD.
I can assure you that our officials will be vigilant in monitoring ASCís progress in this regard and will take their efforts into account in further reviews of applications from ASC for grants or project funding. I also encourage you to work constructively with the Society. Over the past few months, officials from Social Development Canada have had several conversations and meetings with representatives from ASC on the issues you have raised. We have, and will continue to strongly encourage ASC to work to address the issues you have raised.Thank you once again for your letter.
Liza Frulla P.C., M.P.
cc. Autism Society Canada
AUTISTICS AND THE IMPACT OF LIZA FRULLA
3 May 2004
I have read your letter of April 26, 2004, very carefully and can detect no evidence that my concerns are being taken seriously or ever will be. Instead, your wholehearted declaration of support for Autism Society Canada (ASC) augurs poorly for the future of autistics in Canada.
Your letter reads like a promotion piece for ASC. It is your official stamp of approval for ASCís priorities, policies, and actions. You have here and there used ASCís exact wording in advising me why I too should support ASC.
A. An Abbreviated Update
B. The Non-Apology
In the previous letter I wrote, I asked you for an apology for a statement made on your behalf. Here is the statement:
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.
I would like to offer my sincerest apology for the letter that was sent to you from my office on February 27, 2004. I fully understand why the paragraph in question upset you. I can assure you that there was no intent on our part to imply that people with Autism, in general, are not able to or should not be provided with opportunities to speak on their own behalf.
Please consider the letter rescinded. We are writing a revised letter that will be sent to you shortly.
However, neither Ms Tunis nor anyone else sent a letter "shortly" to replace the "rescinded" letter. In any case, following Mr Grujicís refusal to consider the real issues, and an ODI officialís refusal to identify the source of Ms Tunisí information about autism, I had already written to you. I then responded to Ms Tunis, re her apology:
My response to your letter has been sent to the Hon. Liza Frulla, Minister of Social Development. Her office has received it this morning. I am asking for an apology from the Minister.
This is not just about an errant statement. Decisions have been and continue to be made on the basis of the prejudices against autistics casually deployed in your letter. There is no other explanation for the inadequate and inappropriate non-responses I have so far received to the legitimate and pressing concerns of autistics in Canada and elsewhere.
A person from your department gave me a very rough time yesterday when I politely tried to explain the problem. It was repeatedly implied that I was unable to understand the regulations.
While I thank you for your apology, it remains insufficient to the magnitude of your office's, and this ministry's, and your government's misrepresentation and mistreatment of autistics.
Not only have you chosen not to apologize, Minister, you have not in any way explained how it is that ASC is "consumer-focused". You claim to fund only disability organizations which are consumer-controlled or consumer-focused. I see no third category specifically for autistics. I see no indication that the presence of consumers in governance is optional. I donít see anything that says that so long as an organization does not explicitly forbid the participation of consumers in its bylaws (as opposed to in its practice), then it is consumer-focused.
Autistics have noticed that consumer control is available and in fact mandated in many organizations dealing with intellectual disability. One consequence of ASCís effort to alert Canadian society as to the nature and "impact" of autism, and as to the appropriate role for autistics, can be seen in the statistically improbable absence of autistics (who are a significant proportion of those with intellectual disabilities) from the governance of Canadian intellectual disability and community living organizations.
The differential handling of autistics by ODI constitutes adverse treatment on the basis of disability as enumerated in the Canadian Human Rights Act. The only rationale for the designation of ASC as "consumer-focused" is the false, insulting and illegal paragraph written on your behalf by the Director General of ODI. I am mystified at your inability to understand this simple problem: other than Ms Tunisí prejudicial paragraph, there is no rationale for the funding of ASC as "consumer-focused".
For the record, ASCís wishes to the contrary, autism is not fatal. So the ratio of children to adults is the same in the autistic population as in the non-autistic population. Nor does the existing science support a staggering/dramatic/alarming/epidemic/skyrocketing increase in autism, regardless of the false information ODI pays ASC to distribute. The majority (75%, conservatively averaged from recent sources) of autistics have functional speech before age five, and many more autistics will develop speech afterwards. In addition, many autistics communicate effectively using non-speech forms of language. As to our inability to function in typical organizations, this is true only if the said typical organizations embrace ASCís misinformation about the "impact" of autism. No person can function in an organization in which their existence is greeted with dread and horror, and in which they must dedicate their every effort to the concealment and eradication of their own essential traits.
Unless Ms Tunis was in her paragraph expressing her personal opinion of autism, this material was generated by ODI and has existed there as the basis for autism funding decisions. One can safely assume this information came to ODI courtesy of ASC. It is hardly credible for Ms Tunis to apologize for issuing unacceptable statements while concurrently funding and praising the organization which generates and disseminates such statements.
Ms Tunisí declaration about "individuals with Autism Spectrum Disorder" is as offensive to autistics as an equivalent statement (they are children, they canít speak "right", and they canít participate in "real" organizations) made about aboriginals would be to aboriginal people. This is why a credible apology was asked for at the ministerial level. Human rights violations this blatant should not be winked at. Failing to apologize, Minister, betrays your disrespect for those your department claims to be "empowering".
C. An Unlawful Distinction
I spoke with Ms Tunis on the phone shortly before receiving your letter. She greeted my concerns with amusement and bemusement, condescension and shrugs of helplessness. Clearly, the decisions have already been made. I learned that while ODI asserts it is fully aware of the contents of the open letter, and has not contested these contents, ASCís funding was again unconditionally renewed for another year.
In this conversation, Ms Tunis remarked that surely institutionalization is a thing of the past. This is the same person who is funding the ASC policy position that a "bleak institutionalized future" is in store for all autisticsóthat would include meówho remain autistic.
When I asked Ms Tunis about the great discrepancy between how autistics and people with Down syndrome are treated by their respective organizations, she responded that the discrepancy results from autism being, in contrast to Down syndrome, treatable.
Here is what the Canadian Down Syndrome Society (CDSS) writes about Down syndrome:
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada.
Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.
This is interesting, since CDSS also recommends early interventions for children with Down syndrome. But these interventions are not "treatments" to erase the childís nature. CDSS understands that Down syndrome is compatible with education, learning, and achievement. A child with Down syndrome does not have to become or to resemble a child without it in order to be healthy, educated, valuable, and human.
In contrast, ASC unethically advertises, and ODI uncritically accepts, that autistics can and must be "effectively" treated, with "medically necessary" early intensive behaviour interventions, or else we are doomed. These interventions are premised on the disordered and defective nature of all autistics and the uselessness of our essential characteristics. We are deemed to have neither potential nor worth as autistics. Therefore, it is appropriate and even admirable to banish autistics and to make us look as horrible as possible, since money will then be forthcoming to "treat" us, that is train us, to resemble the non-autistics who are valued in this society. This is perhaps ASCís most prominent policy position.
In Ms Tunisí version of differential disability funding, those of us not seeking or lobbying to fix ourselves and all autistics via behaviour interventions, such that we can pass as non-autistics, merit neither inclusion nor respect. We are not doing our duty, and if we are disrespected and ostracized, this is just what we deserve. Then the government pays to promote this position. And you, Minister Frulla, say bravo.Ms Tunis is also overlooking that Down syndrome is "treatable" by prenatal genetic testing, followed by selective abortion, and no doubt this could be justified by cost-benefit analysis. The CDSS has written a powerful policy statement objecting to this "treatment".
D. The Meaning of ďConstructiveĒ
Your "understanding" about ASC is that it is, as ASC also states in Auton, "the only pan-Canadian organization advocating for those with ASD". Your "understanding" is that autistics speaking for ourselves donít count and nor do our organizations: we are merely isolated individuals, and we are incapable of advocacy. Other people, with the essential qualification of being non-autistic, must speak for us.
In spite of your and ODIís insistence that I should work "constructively" with ASC, I cannot do so, since I have been explicitly told I am unwelcome. I have written many times now that I tried to work with ASC for years, going back to 1996, and that this effort was futile. I have provided many examples of how I and other autistics have been treated by ASC.
How many more examples do you require? I was yelled at by ASC Vice President Dr Peter Zwack when I suggested that ASC treat autistics respectfully. An ASC-recommended psychologist told my employer that autistics are worthless. I have so often been belittled and infantilized, and endured the denigration of all autistics, in my contacts with ASC and its offshoots, that listing specific examples is impractical. Last year, I attempted to speak with my ASC member affiliate. This would be the group I would have to join, were I to participate in ASC. I doubt my membership would be permitted. And it would be hard for me to give money to a group which many times has called me a plague, and which celebrated a woman who killed her autistic son as a role model and hero. I did try anyway. First I was shunted into "services". Then my diagnosis was changed, over the phone. When I objected, I was laughed at and told I was too stupid to understand my own diagnosis.
The onus is on you to explain to me what "constructive" means in this context. Iím aware that positive views of autism are not seen as constructive. In fact, they are seen, as witnessed by the mail received by anyone proposing autistics have worth, as being destructive and reprehensible. I wonít work with ASC to promote negative views of autism, so if this is what you mean by constructive, I canít be constructive. Nor can I accept or promote ASCís very recent tactic (in the public, but not in court or in its submissions to the government) of segregating a small select group of autistics with a particular diagnosis as occasionally having some worth, all the while condemning those not in this select group to hopelessness, worthlessness, and doom.
E. The Impact of ASC on Autistics
ASCís actions have a large impact on autistics. They have made great differences in our daily lives, as you state. These differences are not welcome.
I used to be able to explain myself when I was in difficulty. I can no longer. Everyone "knows" about autism now. So I am greeted with horror or disbelief, and nothing I can say or do will rectify this. I have through the force of recent experience learned that disclosing my diagnosis in almost every situation carries severe and permanent consequences. I have learned that my diagnosis totally compromises my work, regardless of the quality of that work.
ASCís actions have also resulted in courts, human rights commissions, and governments adopting the view that autistics who remain autistic are an expensive tragedy. These legal and political entities have been recruited by ASC-supported groups to obtain and implement programs premised on the doom of all autistics who donít succeed, via early intensive behaviour interventions, in extinguishing our autistic traits. This has rendered many legal and political processes inaccessible to autistics who have not been "fixed" in this manner and do not wish to be.
ASC has rewarded those who denigrate and exclude autistics ("constructive", they are called), while those who hold positive and accurate views of autism have been vilified and ostracized. The rhetoric used to demean autistics has escalated significantly in recent years, and ASC has done its part in contributing to this trend. Contrary to ASCís policy in this area, we do not benefit from being targeted by hate speech any more than non-autistic human beings would.
Minister Frulla, unless you truly believe that autistics are subhuman non-persons, you cannot believe that ASC meets ODIís criteria for funding. Nor can you believe that ASC is anything but another barrier preventing autistics from speaking for ourselves and from participating in society.
F. Autistic Persistence
You state that I am asking only for ASC not to be funded. Iíve seen a great deal of evidence that no one has considered the contents of the open letter, and here is some more. What I did ask for is written clearly under the heading of "Mitigating the damage". I cannot see anything under this heading that is obscure or unclear. Yet it has been ignored, in spite of these requests having been made with the support of Canadian and international autistics and our allies.
My goal in writing the open letter was to mitigate the damage to autistics resulting from ASCís government-funded dedication to the financial and emotional needs of non-autistics. I proposed simple and effective ways to do this. Since October of last year, I have been ignored, and so have those who signed on to support this effort.
Minister Frulla, I have learned from yourself, Ms Tunis, ODI, and ASC everything that can be learned about taking an insult, and about how to survive disrespect and denigration. You are being badly advised if you have been led to believe that we will meekly return to our ignominy if we are sufficiently berated and demeaned. Our existence and survival in society are at issue, and while you are paying ASC to deny our truly extraordinary autistic gifts, one of these gifts is persistence. Autistics will persist even when you violate our rights and insult our humanity.
Minister, I am again asking you to apologize. An apology is proper and appropriate and would have been granted instantaneously to any group of non-autistic persons similarly disrespected. I also expect you to notice that Ms Tunisí position re autism versus Down syndrome is not acceptable in a person running Canadaís disability agenda. And mitigating the negative impact that ASC continues to have on autistic people is simple. You need only to respect your own rules, and to understand that refusing to apply them in the specific case of autism is neither ethical nor legal.Thank you for your time.
This letter was received and signed for by Minister Frullaís office on the morning of May 4, 2004.
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