My Photo
Name:
Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, April 04, 2007

 

Brian Henson's Response to Senate Committee Report

I have provided my blog to The Autism Acceptance Project's autistic board members to comment on the recent Senate Committee Report: Pay Now or Pay Later: Autism Families in Crisis. Below is Brian Henson's response to the report first. The second half is his comment on why The Autism Acceptance Project did not participate, nor was invited, to these hearings. We are working on doing so in the future:

One of the centre comments of the Senate Committee on Autism in its report "Pay Now or Pay Later" is the following statement (from Item H, in Part III: Action Needed by the Federal Government):

"...the [Senate] Committee supports the symposium announced by the government and recommends that: Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building."

This statement is, albeit, a first step, but the requirements (or conditions of inclusion) of the symposium, as outlined above, are just not precise enough. What is the definition of "equal" in the first recommendation? Would anyone care to say that it could mean equal representation for each participant in the symposium for those who are autistic individuals and those who are not? This is highly unlikely, given the per-capita rate of autism today and the number of non-autistic persons and organizations wanting to be represented at such a symposium.

Also, there is no mention in the statement that autistic individuals be represented "as equal partners" in any future symposium orchestrated by the federal government (or a branch of the government, including a crown corporation). This leaves the statement of equal partnership as just an olive branch to get autistic individuals to feel as though they are having some say in the development of governmental resources, when the case might be just the opposite--they might be used just as "pawns" to show how autism needs to be treated, because the individuals, themselves, do not "behave" as a "normal" person would behave, and anything these autistic individuals, regardless of the number, had to say at such a symposium, would "go in one ear and out the other", as far as parents, professionals, and government policy makers.

In the second part of the statement, it mentions "a clear set of goals and defined outcomes", but does not indicate (except by "consensus building") what these goals are oriented towards. Also, what is consensus building? Is it just taking what the majority of people at such a symposium want, and ignoring what the minority are saying? If, for every hundred non-autistic persons at such an event, there was just one autistic individual, how would one establish both the concept of equal partnership with autistic individuals, while, at the same time, building consensus?

These issues are not new, as far as symposiums (and the myriad of other forms of human interaction), but still require a better outline, available to the public, before the symposium itself, on how these issues are going to be handled at such a symposium or conference. That way, each person participating in such a conference, whether as an individual, or a representative of an organization, will understand what to expect beforehand, and prepare accordingly. For example, will there be provision at such a symposium for persons who used other means of communication (such as facilitated communication) to be able to present their views and priorities on autism? Will written briefs sent by those not present be considered just as important as the presentations by those attending the symposium? Will it be open just to persons in Canada, or will persons (professional or otherwise) from outside Canada be able to attend and present at the symposium? Will issues affecting human rights, aboriginal issues, and other issues, beyond autism (medical or otherwise) be open or restricted at such a symposium? These are just a few of the questions that need to be answered in outline form, open to the public, before any such symposium is ever scheduled. Without such issues being addressed ahead of time, there will just be more confusion and conflict wrought out of such a symposium.

Of course, if the outline of the symposium, itself, is far too restrictive, in any way, there might be more protests than input at such a symposium. Therefore, those preparing for such an outline of the forthcoming symposium need the assistance of various persons experienced in the principles of negotiation, and how to avoid conflict (and confusion), in yet another attempt at human interaction as a basis for policy making at the government level.

This is Brian Henson's response as to why The Autism Acceptance Project has not yet participated in such hearings:

The question seems to arise, as to TAAP not being involved in the recent Senate Committee Hearings.

That question is whether inclusion can be demanded or built. It seems to be a question of time. Those who see it as a demand (and without such a demand, no inclusion can be conceived) are ready to point a finger at anyone who does not demand inclusion (as they do, at that moment). However, those who see inclusion as something built in the form of diplomatic initiatives, see it as a test of solid but persevering patience.

If one is ready to confront those who are against inclusion, then the diplomatic moves will flow; but if one is not ready for such a confrontation, then the demands will be seen as purely rhetorical, and of no subsistence.

TAAP, at the time of the Senate Committee Hearings, was not ready, due to various factors, none of which was apathetic in nature; and these factors, including the fact that TAAP was not invited to participate in these hearings, must be taken into account. To suggest, in any way, that because TAAP did not participate in the Senate Committee Hearings it was being supportive of those organizations who deride autistic
individuals in any way (because such organizations were present and forceful at the Hearings) is just not applicable.

If you do not defend a neighbour at every moment does not indicate, however slightly, that you are spreading hatred towards that neighbour. Perhaps you were just not there, at that moment, when the neighbour needed defending, or were limited as to the type of defence you could enable.

Like a hockey team player who has less energy than a week ago, and slips once or twice during a game where that player's team is defeated, it is not the onus on that player to prove that he was the one who lost the game (due to that player's decreased energy); there were just too many mitigating circumstances as to why the team lost. However, and this is important beyond the score: the team cannot be self-reproaching over one loss; it must move on to the next game, whether that game is tomorrow or next year.

Likewise, it is not a matter of portraying TAAP as being at fault for not attending the Senate Committee Hearings, and causing those opposed to inclusion to be seen as the victors at the Hearings. There will be more chances ahead for TAAP to be included, and often when the slower approach is taken towards political issues, the stronger the basis will be over time. When solid connections are made, however long that might take, the bonding is far more permanent, and the results go far deeper than just one set of hearings or one symposium. These results will be a much stronger stand in support of inclusion of autistic individuals in their own needs and support systems,whether by private interests or governmental interventions.

Therefore, TAAP has pursued the role of bringing autism awareness to the public not by trying to portray itself as a front runner, ready to persuade by popularity, but by trying to portray itself as the group with the most solid foundation as a basis of its stand that autistic individuals, themselves, must be full party to any discourse about the needs and supports of each autistic individual. While other organizations, more bent on the current situations, will fall over time, due to a lack of a solid foundation, The Autism Acceptance Project will, with its solid foundation, withstand the pressures over time to withdraw or to decrease its stand on the full potential of autistic individuals.

Please note that these are individual comments made by TAAProject board members. Stay tuned for more comments from The Autism Acceptance Project board members, autistic and non autistic, alike. To reach Brian Henson, please email ryley@taaproject.com.

0 Comments:

Post a Comment

Links to this post:

Create a Link

<< Home