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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, May 17, 2008



"If I participate, knowingly or otherwise, in my sister's oppression and she calls me on it, to answer her anger with my own only blankets the substance of our exchange with reaction. It wastes energy. And yes, it is very difficult to stand still and to listen to another woman's voice delineate an agony I do not share, or one to which I myself have contributed." (Audre Lorde, The Uses of Anger: Women and Racism)

It does not sound like progress is being made at IMFAR in London, UK, from the comments from my post made on autism research yesterday (see yesterday's post below). Non autistic researchers, profiting from parental fear --societal fear, even -- about autism does not wish to hear the autistic person -- be it aspie or non verbal autistic typing out a sentence. I wish I was at IMFAR because as a parent I am angry and I am using that anger, as Lorde suggests we do as she refers to the divide between white and black women:

"The angers between women will not kill us if we can articulate them with precision, if we listen to the content of what is said with at least as much intensity as we defend ourselves against the manner of saying. When we turn from anger we turn from insight, saying we will accept only the designs already known, deadly and safely familiar."

Autistic people, when they speak up about oppression are accused of being "too high functioning," and "not like other severely autistic children." Some parent will always stand up and say how their plight is worse than the person standing in front of them. And for what purpose? In order to squelch the words of autistic people who only want better for every autistic person everywhere. What do parents fear? This lack of services? This lack of respite? That won't happen if we truly support autistic people everywhere and include them in society.

Is the fear of one's own failure for having a child that you don't really want to have? One with "problems?"If so, whose problem is it, really?

What fear do the scientists have by being challenged by autistic people about ethics and standards? Do they fear their tenure, their jobs, their reputation, their paycheques?

Would it not service us all to talk about it openly and out loud so that this useless research -- much of it supported by Autism Speaks -- actually gets funneled into assisting and dignifying the rights of autistic people living today! Let's call it an excavation of honesty, as Lorde put it once.

"Any discussion about among women about racism must include the recognition and the use of anger. This discussion must be direct and creative because it is crucial. We cannot allow our fear of anger to deflect us nor seduce us into settling for anything less than the hard work of excavating honesty; we must be quite serious about the choice of this topic and the angers entwined within it because, rest assured, our opponents are quite serious about their hatred of us and of what we are trying to do here."

I wish I was at IMFAR because the autistic people standing up and speaking out are speaking for my son and his future and I stand beside them in their struggle.

Here is a recent picture of me two days after surgery in the hospital with my autistic son, Adam. I look as anyone would after major surgery. Look at the concern on his face. And I can imagine all the "experts" at IMFAR calling people like him "not aware" or "incapable of empathy."

They do not live and experience the likes of him outside their labs everyday. Some of them might even call him "severely autistic." Some might say "moderate." Some of you even have the nerve to write that your child is somehow worse off than mine and doomed to an institution, yet, when I meet those kids, they are even more verbal than my own son!! I watch ablest videos (I am compiling a post of videos that some parents and governments make to reflect the "worst" of their child -- stimming --- and this is the most horrible thing I can imagine a parent doing for a child in the name of "helping" them).

Yet, I am hopeful that the autistic individuals at IMFAR march one step closer to actually being heard. I am hopeful that it is not wasted energy, even though it feels so often to be the case.

I end with a movie you can watch this weekend: Music Within. The struggle has gone on for a very long time.


Blogger Camille said...

I wish you could be at IMFAR this year. I wish I was at IMFAR, too.

I hope you feel better soon.

3:48 PM  
Blogger Steve D said...

You bring up so many good discussion points in this post, Estee, all of which pale in comparison to the poignancy of Adam's expression in the photo.

1:01 AM  
Blogger Estee Klar-Wolfond said...

To the concerned aunt who wrote me a message about an autistic child's health -- I am so sorry -- I did publish your comment and I have no idea why it is not showing up here.

I can't say that an autistic person's health is any more fragile than any other person's health. Adam is quite a healthy little boy. As I am not a doctor, and don't really know what's going on, this is all I can really tell you from my personal experience.

12:14 PM  
Blogger Navi said...

yes, an autistic person can have excellent health. Autistic children with health problems have comorbid problems meaning they have more than one problem and those problems are not related.

My son is extremely healthy. I have a somewhat difficult time getting drs to investigate because he is always active and running around and looks healthy.

I originally came to comment here about the videos of stimming. I think it's odd. as I take images/videos of Tristan stimming because I think he's beautiful.

and I agree that you can't say autistics are incapable of empathy, my son boils over with it. If you are in a bad mood, even if you aren't yelling or doing anything, he will react, he will be upset and hard to deal with, but if you are genuinely happy, he is happy. If that's not empathy I don't know what is. And no, it does not mean he is not autistic, just like the fact that he hugs adults does not mean he is not autistic (I had this conversation with his pediatrician, who was getting repeatedly hugged by him at the time).

3:12 PM  

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