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CANADA CELEBRATES ITS WHITE PAPER
By Michelle Dawson
Imagine you are a person with X disability who is represented by a disability organization. On June 1, 2004, this disability organization, X Disability Society Canada (XSC), issues a press release celebrating the birth of a White Paper. The title of this paper says it is the Canadian research agenda and strategy for X disability.
This seems like reason for celebration. You have a research agenda. You have a strategy. It’s about time. Congratulations.
The first priority research item listed in the press release includes “involvement of all stakeholders”. Wonderful. “Stakeholder” means you.
Or does it?
The White Paper was hammered out at a workshop, the Canadian X Disability Research Workshop. You heard about this ahead of time, and excitedly asked how many X-disabled people would be there. You asked more than once, since you noticed this was important, if not crucial, as well as being a unique opportunity with irreversible consequences.
You were totally ignored. In fact, people involved in X disability from all over Canada and the US were invited as guests, more than seventy of them. Some of them were researchers. Some of them were parents of X-disabled people, some belonged to prospective funding bodies, some represented service providers, and some came from governments. Their job was to vote about the priorities for X disability in Canada. Even if they didn’t come from Canada, or live here, they had the right to vote. The one qualification for participating and voting was being normal, which means non-X-disabled.
So you couldn’t vote.
XSC and its collaborators, including a Canadian government funding body, and some Canadian researchers, and an American funding body, all decided that besides being by definition—you’re disabled, after all—incapable of understanding research, you’re obviously not responsible enough to make decisions about yourself. Instead, normal people have to do that for you. And you should be grateful.
The one thing X-disabled people were considered capable of, all the normal people decided, was to tell their stories at lunch time. Two local X-disabled people were hired for this purpose. When they were done they went home.
The next day, all the normal people, who you know are capable of decision-making, since they are not X-disabled, conducted the workshop in which your future in Canada was decided by vote. You were not allowed to vote. You were not allowed on the premises. Real decisions were being made and this important process could not, for your own good, be hampered by X-disabled people. Even though you are a researcher yourself, and a member of one of the research groups listed in the White Paper, you could only have made selfish and irresponsible decisions. Those are the kinds of decisions XSC has determined that X-disabled people make. XSC’s entirely normal Board and its chosen entirely normal collaborators were sincerely keeping in mind your best interests by keeping you and everyone like you at a safe distance while serious issues about you were being addressed and finalized.
You are not a stakeholder. You have no interests. You have X disability. You are alarming, XSC writes, you are a burden unless you are fixed, you are a staggering, dramatic, skyrocketing epidemic. It doesn’t matter that because you are a researcher you know these claims are false. You must be protected from your own accuracy for your own good.
Further, you see X-disabled people as having integrity, as having the “honest humanity” that John Fryer talked about when he made history at the American Psychiatric Association. He was talking about homosexuality, at the time considered to be pathological. He said,
“We are taking an even bigger risk, however, not accepting fully our own humanity, with all the lessons it has to teach all the other humans around us and ourselves. This is the greatest loss: our honest humanity."You must also be protected from your own folly in believing you have worth as an X-disabled person, for believing you have something to contribute as yourself.
Meanwhile, your local XSC-member affiliate repeatedly calls you a plague. In one case, a terrible plague. As if plague is not quite a bad enough word for you and needs to be augmented. Now this is good for you. You are sadly not bright enough to understand.
It must be good for you, because all of this is funded by governments and explicitly approved by them. They don’t want you to exist either and any funding that goes towards this end is money well spent.
A person who should not exist cannot be a stakeholder.
Wait--there is hope. XSC wants good outcomes for those X-disabled people who regrettably are born. They claim some of you can be fixed. You can maybe even come to pass for one of them sometimes, if you start when you’re a baby, if you don’t do much else, if you’re constantly corrected and constantly correct yourself, if you don’t mind rejecting your own strengths, weaknesses (and if you accept your own abnormal weaknesses, this is yet another reason to disqualify you from decision-making), and integrity. It is just possible that if you do exactly what the normal people at XSC tell you to, they will one day invite you too to tell your success story.
But a stakeholder? You are asking for a great deal. You don’t understand your role as the raw material and occasional entertainment used by the normal people around you as required to fulfill their important strategies and agendas. Fortunately, there are courses about people like you, and there are well-informed XSC people and their approved health care professionals who know how properly to handle your behaviours. You’re not behaving appropriately at all. In fact, if you don’t behave, you will have to leave.
Never mind that there is no place for you to leave from, much less a place to leave to, since XSC has so effectively practiced and promoted your ostracism.
The above is a true story.
You are not a figment of my imagination. X disability exists, more usually called autism. You’re an autistic Canadian. You’re me and everyone like me in Canada. Congratulations. For your first glimpse of your future, see http://autismsocietycanada.ca/mediafinal.doc. And before anyone heaps praise on XSC, or rather Autism Society Canada, for its good works and its important White Paper, they may want to exercise the empathy they are supposed to have, and we autistics supposedly lack, in order to place themselves in our shoes.
John Fryer’s words are taken from his obituary, see http://bmj.bmjjournals.com/cgi/content/full/326/7390/662
For the English
plague remarks, including “terrible plague”, see
|© Michelle Dawson 2004 | Published June 1, 2004|
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