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AUTISM SOCIETY CANADA’S
"…departmental officials are working with the Autism Society of Canada, encouraging it to take a more proactive approach to including people with autism …"—The Hon. Ken Dryden, Minister of Social Development, email to Michelle Dawson, October 27, 2004
"I would like…to assure you that your concerns are taken seriously."—The Hon. Ken Dryden, Minister of Social Development, email to Michelle Dawson, October 27, 2004
After a year of Autism Society Canada (ASC) refusing to communicate with me, ASC's Executive Director, Louise Fleming, phoned out of the blue. The ensuing interchange has not been encouraging, and ASC's true motive for wanting to meet with me remains mysterious.
ASC's contention that they wish to meet face to face with a person who they have already seen face to face (even if, in the case of Ms Fleming, and ASC Board members Lisa Simmermon and Jo-Lynn Fenton, they chose not to introduce themselves) is not credible. Nor is their contention that a meeting is required to "clarify” my concerns. These concerns are clearly in writing. ASC wrote that one qualification for citizenship in its autistic ghetto is "ability to read and understand documents outlining a variety of issues”. Surely the Board has to meet the same qualification. ASC's insistence that I dictate what I have already publicly written so an ASC note-taker can inform the Board strikes me as absurd, as well as insincere.
I have always suspected that the assumed communication deficit in autism is not entirely, or perhaps even primarily, located in autistic people. Well-documented autistic attempts to convey clear, precise, and essential information to those claiming to be acting on our behalf have been greeted with condescension, contempt, and ostracism. An objective reader of this record of failed communication would have ample evidence to conclude that non-autistic communication disorder is one symptom of the difficulty some non-autistics have in contemplating autistics as equals.
(10 October, 2004, email to the
ASC Board, care of Peter Zwack, Lisa Simmermon,
and Louise Fleming)
This letter is for the ASC Board. I only have the names of three Board members (requests for names of the entire board were refused), and email addresses for two. Since these two have indicated variously that they wanted nothing to do with me (and found autistic people "horrible") and/or found no need to listen to an autistic person more than once, since everyone knows we just go on and on about the same subject—there seems little use in writing at all.
However, Ms Fleming disrupted my day (October 8) by phoning to say that she and Dr Zwack were generously offering to meet with me.
The only reason Ms Fleming gave for the meeting was to see me "face to face". Since I have already met Dr Zwack, and since if Ms Fleming (or for that matter, Ms Simmermon or Ms Fenton) wished at all to see me, she (they) could have done so in Ottawa on June 9 (ASC reported I was there, so clearly I was recognized, by people I had never met), there seems no actual reason for this meeting. I would guess the real reason is for ASC to say it did not refuse to meet with me, allowing ASC to more effectively silence me (and this is a waste of time; I'm already silenced in Canada).
I suggested that Ms Fleming supply a real reason for meeting, a goal for the meeting, a format for the meeting, and I will add here, a statement showing that ASC is taking my concerns, which reflect the concerns of many in Canada and around the world, seriously, as well as a statement as to why all these concerns have been ignored to this point. This would mean ASC would have to be aware of my concerns.
In the phone call, Ms Fleming was rude, extremely condescending, and dismissive. She made it repeatedly clear that ASC was entirely and absolutely satisfied with every aspect of itself. Ms Fleming discarded everything I said by saying it was "my opinion" and that further I was not capable of understanding the real situation at ASC, I suppose because, as my ASC member society has informed me, seeing as I'm autistic, I'm very slow and stupid (they laughed at how stupid I am). It was also impressed on me by Ms Fleming that my concerns were not just ill-informed and biased, but were so utterly frivolous that no one at ASC had the time to bother even reading them, much less considering them.
Ms Fleming showed not just ignorance of everything I've publicly stated about ASC, but ignorance of ASC's own website, ASC's member societies (which, assuming that I was just not smart enough to grasp this, she reiterated a dozen times are ASC) and their actions and statements, ASC's actions and statements past and present, as well as ASC's legal position and ASC's statements in the media. She was not aware, for example, that two ASC members had funded the Auton intervention of a FEAT group, and was sure I was wrong when I said this. But this is public information published by an ASC member.
I don't need a lot more people to meet with me and tell me how dumb and irresponsible I am. I've had a lot of meetings like that and I don't need another one. Ms Fleming's phone call was completely unproductive, as are all efforts to tell me how dumb and irresponsible I am without providing evidence of why. Nor was it productive for Ms Fleming to tell me repeatedly how wonderful ASC is, again without providing any evidence. In fact, Ms Fleming treated me exactly like the useless burden-on-society that ASC claims—over and over, in the media, in the Supreme Court, on its website, at every opportunity—all autistic people are, unless we are fixed by one specific "medically necessary" treatment.
I've nothing against a meeting with people who are mature enough to conduct a real discussion on the issues. But Ms Fleming clearly indicated that no one at ASC is interested in anything I have to say, not even enough to read it. I am a priori dismissed; the meeting is just a formality so ASC can say they met with the one unreasonable autistic person in the country, and that she stated her unimportant "opinions", which fortunately few agree with.
So why meet with someone you have absolutely no use for, and cannot treat with even rudimentary courtesy? And Ms Fleming indicated that everything is settled and wonderful at ASC. It is clear that people like me—those of us who disagree that autism is just like cancer, that autistic people are a staggering/alarming/skyrocketing epidemic/plague, and that autistic people are tragic and useless and will destroy the economy unless medically fixed—are not wanted or needed. ASC has exhibited no interest at all in a balanced and accurate view of autism and autistic people; and it is at least unlikely that ASC's offer of a meeting is in good faith.
I have questions which I want answered. One is that I want (not the first time this has been asked) a list of ASC's Board: its current Board, and the previous term Board. I also want ASC's applications for SDPP organizational funding as an NDO for the years 2002, 2003, 2004; as well as the application for the special project funding for the distribution of the White Paper.
I also want the list of ASC's autistic consultants. Ms Fleming said they were secret. The reason she gave was "privacy". If I can't know the names of those who will speak for all Canadian autistics (and this is entirely the opposite of every other autism society and/or disability organization anywhere), I want to know exactly what the privacy issue is. On exactly what grounds are autistic people participating in ASC held as a close secret?
That is all. If someone is familiar with my work, does not think ASC is perfect, and wants to meet, I will meet with them provided there is a real stated purpose of the meeting and some show that I will be treated like an adult. A meeting based on Ms Fleming's assumptions—that I am too stupid and irresponsible to properly research my own positions, as well as being too neurologically defective to draw conclusions from overwhelming evidence—would be very painful to me, apart from that I am busy and do not want to waste time and effort in exchange for even more insults and despair.
I will wait for a week for a response to this. If I don't have one by then, I will take the position that ASC is refusing to meet with me.
(October 14, 2004 email from
Dear Ms Dawson,
I thought that I was being respectful of you when I called you last Friday, October 8. I am sorry if this is not how you found me to be.
Perhaps I was not clear enough about why I called you. Peter Zwack, Vice-President of Autism Society Canada and I would like to meet with you in person to hear and clarify your concerns so that we can bring them back to the ASC Board. We would bring a note taker with us to ensure that we report back correctly what you tell us. If you wish the meeting to be recorded, as you suggested when you and I spoke, that would be fine with us.
We hope that you will be interested in meeting with us.
(14 October, 2004, email to Peter
Zwack, Lisa Simmermon, and Louise Fleming)
I asked for specific information in my previous letter. For example:
I suggested that Ms Fleming supply a real reason for meeting, a goal for the meeting, a format for the meeting, and I will add here, a statement showing that ASC is taking my concerns, which reflect the concerns of many in Canada and around the world, seriously, as well as a statement as to why all these concerns have been ignored to this point.Also:
My goal is to change ASC such that it does not harm autistic people as much as it does now. I have put in writing suggestions of how ASC's damage can be mitigated. For instance, ASC could accurately present itself in public as what it truly is, which is a FEAT group.
You made it clear in our phone call that ASC is not going to change at all. To the contrary, the direction of ASC in the past year has been towards more and greater harm of autistic Canadians. This is to further ASC's claim that autism is a disease/disorder/alarming epidemic which is "treatable", just like cancer, and to support ASC's legal demand for one specific "effective" "medically necessary" autism treatment for all autistic Canadians.
My concerns are in writing. They have all been sent to ASC, as well as being available on my website, No Autistics Allowed, which is here: http://www.sentex.net/~nexus23/naa_02.html .
For clarity, the following deal with ASC's actions and their consequences:
My concerns have been publicly stated for a year now. I see no lack of clarity in them.
ASC has shown no indication, in its actions and public statements (including those of its members), in your phone call or now in your letter, that ASC considers any of the issues I've written about to be important
ASC's absence of any kind of response or consideration shows contempt for the nature and origin of the concerns I've stated. This is in great contrast, for example, to ASC's very public response to the CCOHTA report, here on ASC's website http://www.autismsocietycanada.ca/en/clarification_statement.html. ASC also made very strong statements about the need to fund more research into the connection between the MMR vaccine and autism, regardless of the large amount of evidence denying this link http://www.autisticsociety.org/article515.html. There are many, many other examples. ASC is clearly able to respond to issues ASC considers important.
If after reading the material at the links above, ASC still does not find my concerns to be clear, I suggest that specific questions be posed. These could be answered by email or in a meeting. Email would be better and less expensive, unless ASC has unlimited time and financial resources.
Since you have not stated any purpose for the meeting except ASC's insistence that my concerns are unclear, I will counter with a request for a meeting or other form of communication in which ASC answers my written concerns, including explaining ASC's position in areas where ASC's positions are in contradiction or otherwise unclear. For example, you stated that ASC is for "choice" for parents so far as "treatment" is concerned. This contradicts ASC's position at the Supreme Court in Auton, as does ASC's disclaimer (see http://www.sentex.net/~nexus23/naa_one.html). Either you and ASC's disclaimer are dishonest, or ASC is being dishonest in its legal position. I would like to know which, and a meeting might be suitable to clarify this very important issue. However, a written explanation would be perfectly satisfactory, less expensive and time-consuming, and could then be reported to all those in Canada and around the world concerned with ASC's actions.
If ASC refuses to respond to my "concerns" anywhere but in a meeting, I will meet with ASC. Those I would meet with would have to be representative of ASC as a whole, that is, of the ASC Board. If ASC honestly cannot decipher my concerns in any way, I'm in no position to state them more clearly than I have already in my public written work. I write more clearly than I speak. Many people have read these concerns and have found them clear.
I also made it clear that I would meet with ASC if and when it shows familiarity with my work, and wishes to treat the issues addressed with a minimal level of respect. I still see no indication of this. I instead see that if I ask questions, they will just be ignored. I instead see that ASC now wants to meet about "concerns" it finds too unimportant to study and assumes are unclear.
I am sure ASC can do better than this. I will give ASC a week to respond to the requests I made in my previous communication. ASC also has a week in which to respond to my publicly stated concerns in some way that indicates that ASC is familiar with these concerns. ASC also has a week in which to propose a meeting which has a chance of being productive, and does not start with the assumption that my concerns are unclear.
Otherwise, I will take the position that ASC will not answer my questions, even in the negative; that ASC will not respond to my concerns in any way that indicates ASC is familiar with them; and that ASC is as well refusing to meet with me.
Today is the first anniversary of the open letter going online. A week later ASC was emailed the link to the letter with its many endorsements. A week from today, ASC will have had a year to respond in any way to those many who demonstrated that they understood the damage ASC is doing and wished it to stop. This year of ASC's silent contempt for the existence and concerns of autistic people and our allies speaks for itself.
(October 25, 2004 email from
Dear Ms Dawson,
From your latest email, it sounds like you're not sure that it would be worthwhile to meet with me and Peter Zwack.
If you ever decide that you would like to meet with us, please let me know.
(25 October, 2004, email to Peter
Zwack, Lisa Simmermon, and Louise Fleming)
I have read very carefully what I wrote to yourself and ASC, which has also been read by many other autistic and non-autistic people. I find numerous constructive and productive suggestions and requests on my part, including suggestions and requests regarding a worthwhile meeting.
In your replies, I have noted that ASC refuses even to acknowledge my suggestions and requests, or anything else I clearly have written. Instead, ASC responds as if I have not communicated at all. I am at a loss to comprehend this persistent absence of basic courtesy.
I regret that ASC has chosen to be entirely disrespectful and dismissive of the existence and clearly stated concerns of autistic people, families, professionals, and others in Canada and around the world. You are deliberately and rudely ignoring us, when many other choices are available to you. I regret that ASC has chosen, in flagrant violation of its mandate, to be relentlessly destructive and negative in its approach to issues essential to those who ASC ostensibly represents.
I strongly suggest that ASC reconsider its approach in these crucial matters. I also suggest that ASC can start by showing a minimum of civility and good faith in its communication with me.
The yes/no question
I phoned Ms Fleming on October 29, 2004, with a yes/no question. The question: will ASC ever answer in any way the requests and suggestions I've made.
Ms Fleming said that ASC has written an open letter to the "autism community”. She repeated this several times. Many autistic people and our allies have come to know the true meaning of the "autism community”.
She demonstrated again that she is unaware of what I've written, and stated as justification that she has a lot else to read. If ASC is too busy with its true priorities, I asked, why does ASC have the time and resources to send Ms Fleming to Montreal for a meeting (complete with "note taker”) about my concerns, concerns which ASC has no time or inclination to read.
Eventually, Ms Fleming stated that some time next week she will email me with a yes/no answer. That is, it is impossible for ASC to state whether it is willing (for example) to ever tell me who its Board is. Ms Fleming and ASC must study this and I must wait for ASC to generate a yes or no answer to this question. Then I would know if I can or cannot ask ASC who their Board is. I told Ms Fleming that this was enough of an answer for me. Ms Fleming, who insisted that I had somewhere said I did not want a meeting, indicated that she found me discourteous and disrespectful.
|© Michelle Dawson 2004 | Published October 30, 2004
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