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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

Saturday, October 07, 2006

 

And The Last Word On Autism Goes To...

People without autism are more often than not, given last word on autism. The problem with the article, is that it doesn't interview one autistic person living in Canada today. I am glad that autism is finally being discussed -- that the concept of neurodiversity has been given some attention.

Today, you can read the front page story in The National Post here.

Here was my reponse today to the editor and the writer:

Dear Mr. Brean and Editor of The National Post:

While I thank you for doing the article on Redefining Autism, and understand the need to “balance” the argument by garnering many opinions from parents and professionals, I must point out that it remains imbalanced because it lacks one fundamental group: autistic people.

You did not interview any of the autistic people at the show at Lonsdale Gallery on Thursday night. Larry Bissonnette, considered “low functioning” has said by using his keyboard, “people who think your disability is an illness need to be cured of their ignorant attitudes.” You did not call the many autistic individuals living in Canada today, or our leading researchers in autistic cognitive ability – Laurent Mottron and Michelle Dawson (also an autistic person).

The Autism Acceptance Project’s purpose and The Joy of Autism: Redefining Ability and Quality of Life event is unabashed by this article because it once again shows that the media does not put the voices of autistic people front and centre of issues regarding them. Instead, we continue to get skewed views from non-autistic people and autism academics (also many autistics are part of this academia), about ideas of normalcy. This does nothing more than continue to stigmatize autistic people as aberrant in a way that degrades them and misunderstands them. Don’t you think it might be a good idea to ask an autistic adult what those behaviours mean for them? When you interpret the “boy jumping on his trampoline so that he can see the sunlight flicker through his hands,” one always has to consider that you may not understand what that boy sees – because you are not autistic. Your observations would have been much more fascinating had you contacted an autistic person who could have given you yet another perspective – the autistic perspective.

It was interesting that you did not talk to the many disabled members in the audience as well at Lonsdale Gallery on Thursday night. We had a remarkable attendance of people from many disabled communities – the idea of representing disability with the voices of the disabled is nothing new, and it was certainly not started by me. We had a few unexpected autistic guests as well. I’m sure they will be once again be effected by a de-humanizing, nay medicalized, portrayal of autism. As ususal, people without autism are always given the last word.



I guess I should have mentioned that Adam gets speech therapy, occupational therapy, one to one therapy every single day, and that acceptance does not mean ignoring these things.

All of you (and I hope many responses come from autistics themselves), can respond to the writer and the editor by emailing to these addresses:

jbrean@nationalpost.com
letters@nationalpost.com


Also, today, Saturday, Laurent Mottron and Michelle Dawson can be heard on CBC Radio One 99.1 at 12:00 NOON.

9 Comments:

Blogger Joseph said...

There were many things wrong with that article, but at least the media is mentioning the debate, which doesn't happen that often.

Good letter, BTW.

8:33 AM  
Blogger abfh said...

Even another autistic person might not understand why Adam likes to wiggle his fingers while jumping on his trampoline. Does he like watching the shadows, or feeling the warmth of the sun on his fingers, or hearing the soft sounds that his fingers make when they rub together? Adam is the only person who can describe his experiences accurately.

The most that anyone else can do (whether autistic or not) is to make educated guesses based on our personal experiences and others' descriptions of their experiences. That's why it is so important to get a broader variety of perspectives out there -- so that everyone can learn more about the diversity of human experience.

Joseph, I agree it's good that the article mentioned the debate, but there is some seriously clueless stuff in it. "Remission" of autism? Yeccch. And who has been calling non-autistics Big Worlders? I've never seen that term on any neurodiversity blog (and I'm not going to rant about what I think of it, but you can probably guess).

12:39 PM  
Blogger Heather said...

Hi there,

I listened to the Quirks and Quarks segment, and in my complete excitement, I ended up here. I am brimming with enthusiasm, and at the same time hope. I am no longer alone. Yesterday, I thought I was the weird mother, today, I learned there was a community of like-minded people. I cannot express the depth of my excitement, and at the same time relief.

You can read a little about my kids here - snippets from my blog.

Here

and Here


Thank-you over and over for your advocacy. Its so important. And I am so grateful that I eventually stumbled into it

Heather

6:15 PM  
Blogger Jennifer said...

As a parent of a child with ASD, I'd like to welcome Heather, and I hope that she finds the same peace that I have found with my child.

Estee is right! The last word should go to people with autism. I've learned so much from Michelle Dawson and Amanda Baggs and others. I hope that you can read some of these articles. They are really uplifting and clarifying. I've just chosen some of my favorites. Please read more from these sites.

http://ballastexistenz.autistics.org/?p=204

http://ballastexistenz.autistics.org/?cat=105

http://www.sentex.net/~nexus23/naa_aba.html

http://www.sentex.net/~nexus23/naa_bto.html

7:17 PM  
Anonymous Anonymous said...

Estee:

It was an amazing achievement to provoke enough interest to get on the front page of a national newspaper. Your pointed letter to the newspaper interviewer Joseph Brean of the National Post and his lack of understanding about autists will hopefully open doors for the autistic community to speak out for themselves. Case and point: Adam was seen from the outside and not the boy from the inside.

Scorpio

10:25 PM  
Anonymous Anonymous said...

Estee:

It was an amazing achievement to provoke enough interest to get on the front page of a national newspaper. Your pointed letter to the newspaper interviewer Joseph Brean of the National Post and his lack of understanding about autists will hopefully open doors for the autistic community to speak out for themselves. Case and point: Adam was seen from the outside and not the boy from the inside.

Scorpio

10:26 PM  
Blogger Kristina Chew said...

Estee, did they print your letter? Have you requested for them to do a follow-up article----with the atuistic perspective?

10:08 AM  
Blogger abfh said...

Hi Estee, I posted a comment yesterday, but it seems to have disappeared; anyway, I just wanted to mention that even an autistic person isn't necessarily going to know what another autistic person is thinking, and it's very important to present different viewpoints so that we all can have more background for understanding others. Bravo for your hard work on the Joy of Autism event and your success in getting media attention!

7:17 PM  
Blogger Estee Klar-Wolfond said...

I don't know yet if the letter will be printed...it's Thanksgiving Weekend here in Toronto so no papers are printed on Monday.

7:10 AM  

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