A Correction for the Today’s Parent Article

Filed Under (Acceptance) by Estee on 16-02-2011

I was featured in the March 2011 issue of Today’s Parent. The interviewer was gracious and overall, felt it was an interesting article. It focussed a lot on me, and I hope it conveyed the work that I believe is not about me, but about all of our children.

Also, it is typical in story-telling and in journalism to use tension. The tension is real, yet I feel a need to clarify it.

First, I never set out to “piss people off.” The name of the exhibition and lecture series was titled The Joy of Autism: Redefining Ability and Quality of Life. The full title was omitted from the article. The lecture series featured Susan Senator, Michelle Dawson, Dr. Laurent Mottron, Dr. Morton Ann Gernsbacher, Phil Schwartz, Valerie Paradiz and Elijah Wapner, Dr. Nehama Baum and Ellen Yack. The exhibition featured Jonathan Lerman, Larry Bissonnette, Barbara Moran (this was corrected with editorial staff but was not corrected in the article), Michael Moon and Brian Henson — yes, all autistic artists and present at the opening. Also exhibitied were artists from the MukiBaum Centre. It was a week-long event and the second exhibition itself ran for a full month, garnering a lot of media attention.

The first exhibition of Jonathan Lerman was the catalyst for this second event — so there were two events in 2005 and 2006.

The intention was to provoke people — to nudge others out of a long-standing complascent idea and portrayal of autistic people as a burden on society, incapable, and worthless as they are, unless they are “fixed.” Society has never looked at itself for its views of disabled people. As a result, disabled people have been subjugated to unfair and inhumane treatments in the name of “normalizing them.”

With solely negative media portrayals, and I saw (and I was not alone — there are many other voices out there who speak the same) clearly how this would adversely effect all facets of support and funding for autistic people in Canada and throughout North America. I saw no sense in the idea that portray autistic individuals as valuable members of our society would take away services. In fact, as valuable and equal members, the idea served to speed things up in a way that would benefit autistic individuals to contribute as they are. Instead in Canada, we were promoting this idea that ABA would make autistic kids “indistinguishable” from their peers, and normalize them. This sounded like a good investment: get the kids back on track and then the government won’t have to support them past the age of 21.

The consequence of a positive portrayal, which did not at all exclude the real challenges of autism in our society, was that it “pissed [some] people off,” namely, those people were those intent on portraying autism as a fate worse than cancer in order to garner financial government support for services. At that time, this was a group of ABA advocates in Canada and subsequent to the Auton trial. Autistic children were called “nightmares,” and “burdens.” These kind of descriptions did not match how I felt, and still feel, about Adam.

What was also ommitted from the Today’s Parent article was that the exhibition and event received so much support from people who wanted and needed this kind of event, and there were so many positive articles written around the world about it. So, it didn’t just “piss people off.” It showed what autistic people could do with support. It showed what types of accommodation were needed to be supported by our communities in order that autistic people be successful in society as they are. The proof of such support is the thousands of subscribers to The Autism Acceptance Project website, which I haven’t been keeping up as much due to the events described in that article.

As such, it is still sad for me to think that others must be so political when we share the same experiences; our children are so similar. When others go out to name call those of us only wanting better services and acceptance of our children in an Inclusive society, it should make us all question one’s motives. True, there are people who don’t like disability. Think, Latimer. There are blogs called “Hating Autism” (it is down now but I recently came across another blog, not worth linking so if you are interested go find it called “I Hate Autism and Retards”). There is lots of prejudice and name-calling of those who have real difficulty and are “different.” This is the prejudice that endangers our families and our children, and in my opinion, all of human kind. The proof is there when one site also documented the murders of autistic children by their parents. There was a monthly body count. I used to have a link to that site, but here is another one at neurodiversity.com.I’m used to this approach and portrayal. The National Post once gave my ex husband and I a forum through which to clarify my position. It is called Accepting Autism and I am posting it again for the same reason I did back then.

There’s been a lot of great press too. In 2010, The Autism Acceptance Project was listed in Oprah Magazine as one (#69 to be exact) of The Top 100 Things That Are Getting Better.

Let’s hope so.

If you are interested in seeing some of that event, please visit www.taaproject.com (The Autism Acceptance Project).

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.