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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

Tuesday, June 19, 2007


Redefining Society's Response to Disability

I wonder if most people don't get it. I don't believe that all parents with autistic children get it. I know this is an unpopular way to speak these days in autism. I'm supposed to feel compassion about how hard it is and all. I'm supposed to talk about the financial burden on everyone. Autism Speaks drives the agenda for how we think and talk about autism these days so much so that I'm afraid to use the word to describe Adam in public places. I prefer to say he has trouble talking. Because if I say autism, people will look dire, talk about his mutated proteins or that he watches too much tv, and presume things about him. The stats come out and it's the same old party-line.

I don't like parties much. Not the ones where I have to conform, where I feel uncomfortable being me. I'm getting too old not to be me. And it's not really like me not to get in there and want to answer people's questions about autism. I really do like honest questions. I must admit, however, that there are some days that I just don't think it's worth it in certain situations. With Autism Speaks the new "Goliath" and autistic people a small David (but we all know how it turns out), autistics represent such a small community, and it is difficult to be heard with such, as irony goes, NOISE.

But you see, it's not that I don't have empathy or compassion. It's just that I try to direct it wisely. A good place to start searching where to direct "help" in autism is by turning to the disability community-at-large and disability studies departments at universities world-wide. Let's take a look at my home-town university Ryerson's website to read the following paragraph on the School of Disability Studies project:

"More traditional approaches to disability focus on ways to rehabilitiate or `fix' people with disabilities. In Disability Studies, we focus on society's definition and response to disability."

The school talks about social models of disability rather than the medical model and this is where we need to go. Autism Speaks and like organizations do not go there. The Autism Acceptance Project does. It did when it sought to "redefine autism" with "The Joy of Autism: Redefining Ability and Quality of Life" event last October. Autistic people are always going there. But not many people are listening because they are being drowned out.

Many parents (we have five hundred members now at TAAProject in less than a year), seem to believe this is important.

Why? It is so because many people (we know many of them) will try and make the rights of autistic people seem ridiculous because, as they will too often tell you in fact sheets and press releases, that living with autism is really horrible. They will make the "acceptance movement" or "autism rights movement" seem like it is non existent and made up by a faction of non autistic parents or, as we hear much too often, by autistics who are not really autistic because they can think and type on a computer. They sound convincing. They talk about going bankrupt because they have to do a therapy to make their kids not autistic anymore for to not do that therapy will send them all into the autistic "abyss."

Autistics will argue they are going bankrupt because they have chosen to try and turn their kids into something they are not instead of fighting for inclusion and an empathetic society where our kids receive a good education, no matter what the disability. Our parent advocates here in Canada will frighten others that to not pay for this therapy -- autistic kids will have to live in institutions, they say -- instead of working towards a society that has just and decent living arrangements for those who will need extra assistance, and focussing on what individuals can contribute. We need to fight for a quality of life in many different types of living situations, that people with disabilities have a right to beyond daily care.

Our parent autism advocates ignore a vast array of academia, advocacy by the people who are disabled, and history. David Revielle writes in Abilities Magazine that disabled individuals have been part of changing the way we view "madness." He was part of the group that developed the documentary film Working Like Crazy in 1999. (See this link here for National Film Board link.) He teaches a course at Ryerson called "A History of Madness" with Jim Ward. He says in his article: "Jim and I are walking a trail blazed by Geoffrey Reaume. Following the publication of his book, Remeberance of Patients Past: Patient Life at the Toronto Hospital for the Insane 1870-1940, Dr. Reaume taught "Mad People's History."

Reville talks about the courses' increased popularity and how the agenda has evolved to changing the subject of disabiltiy -- to the social response. They bring in psychiatric survivors creating community by addresing their needs for employment and a decent income.

We have these resources in autism, but few people are listening. has posted many important articles. Michelle Dawson writes in her blog Autism Crisis and No Autistics Allowed. Joel writes in his blog, NT's Are Weird. And of course, Amanda Baggs, who is consistently accused of not being autistic. And there are many more autistic individuals who belong to self-advocacy organizations. The list is longer than I am providing here of autistic people who write books, blogs, do artwork or participate in these groups in some fashion. I do not hear of one autism society anywhere who acknowledges any of them.

It strikes me everytime that people write their bias on the page with pride. From hating something to pretending to advocate on behalf of others because "they can't speak for themsevles," prejudice against the disabled is intolerably tolerated.

I would recommend that any doubtful person turn to the many disability studies departments at their universities -- the hub where change really happens. Or, you can attend the talk Doing Disability At Work: A Symposium on July 5, 2007 which discusses how disabled people fare as learners in mainstream workplaces. Contact Ryerson for more information.

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Blogger laurentius rex said...

"I wonder if most people don't get it. I don't believe that all parents with autistic children get it. "

And I would not be sure that you do either, but then I would say that for that is the sort of thing I am wont to say whether that be for the reasons imputed by those who need a simple explanation in terms of villainy and pantomime "reality" or because there was never any way that I could given the circumstances of my life, my neurology, the history of the world and the alignment of the stars ever do otherwise than I do.

My current nark

Even a phrase like the "joy of autism" is a nuanced phrase which in its production avers to the existance of a polar opposite.

I on the other hand would prefer to say autism IS, it IS it WAS and there is no value judgement either way except that which is put upon it by the overlays of culture and society that gave a name to that state of mind and being which has always been since the begining of humanity.

My experience of autism and yours and the Buddhas and John Best's and Brian Deer/David Kirby (are they really two different people or the pair of them a stereotype of dirty journalism I have created in my own mind) are fragments in the crystalline reflections of what ceases to exist when you turn on the TV and watch the simpsons, or go out an pig out at McDonalds. Perception and focus are all, but didn't Bishop Berkeley say so long time back.

Maybe you have no idea what I am on about now, maybe it does not matter, maybe it never will, but to me it does.

Nothing I do really has greater or lesser value because I am autistic it has value because it has autochthonicity and authorial authenticity that is all.

I am more than autistic I am semiotic, and when greek meets geek then there is going to be some amount of cheating in the tug of war :)

(and that will take some deconstruction in itself I kid you not cos it will be a new day tommorow for what would have to be

and I refer you all to Blakes poetic criticism of the French enlightenment .....

The "world" dissembles and resembles reassembles and disports itself in shambles (Schlacthof funf)

Decode you latter day da vincians, decode, for I would ever in this mode run down that road

Non vincit vinci and veniam my veniality.

The only good autists are the safe ones ?!*

Jeder man fur sich selbst und Gott gegen alle, als Herzog hat gesagt in sein film Aguirre, now google Fitzcarraldo and Kinski and look at the history of difference without a lable.

The lessons of Darkness teaches in reality what Apocalypse now taught in fantasy.

6:49 PM  
Blogger Estee Klar-Wolfond said...

I don't know if I can shoot that nark, or even try...

Agreed. Joy of Autism is an avers. I get what you are saying about autism IS, WAS and that it need not have/should not have imputed value judgement. As a parent, I couldn't help myself. Adam is a joy to me, my only child (I have four step children too, but I waited to have my own, which is a different kind of experience and the circumstances I will not go into here). So he is a joy... to me. It was also a response to others insisting that autism is a misery. But this is repetitions and you know it already.

And no, I can't say that I "know" or "get it" the way you or other autistic people do. It is not my direct experience, but my indirect one as a parent. Thus, what I write is a reflection of what I learn and read from people like you. In that statement, it is important also as a reflection also of how society may change its thinking and actions. Crystalline fragments? Yes, that fragile indeed in the wake of the Simpsons...

Did you read my post on Kitsch? I'm sure you could write about it better than I. I'm afraid we all become so with our rhetoric. But if we truly believed it all for not, where would we be? As a mother, I can not be a nihilist.

No good auties or bad. Not an issue of being safe. Not here anyway. No political correctness necessary.

"God against everyone and every man for himself." Yes, I read German. Aguirre means wrath and in this case Wrath of God.

Geez, Larry. I don't see it as every man for himself until the day I die, I guess, when we are truly by ourselves. I still believe in working together. There are still people who want to learn.

9:13 PM  
Blogger Estee Klar-Wolfond said...

P.S. I like my chubby Buddha.

9:15 PM  
Blogger farmwifetwo said...

I wish I'd started emailing you a few mths ago.

Would have taken you with me to see Dr.Temple Grandin. I think you would have enjoyed listening to her. I didn't want to go at first... but I was pleasantly surprised at the honesty and lack of rhetoric.

To start teaching at an early age. To take children everyone to get them use to being out and about and learning about new things so they no longer frighten, startle and coping mechanisms can be taught/modified to fit the person and the situation.

How it was important to teach coping skills with sensory sensitivities and make modifications (like sitting by a window instead of florecent lights, hats and glasses in malls etc), how to nurture a talent that gives pleasure and turn it into a portfolio and employment later.

She has built her own coping mechanisms, like not attending faculty functions and finding a quiet corner when the world gets too much to handle. I like to tell people "stop the world, I need to get off for a moment" :) If only it was so simple, get off the ride and get back on when we don't feel like crawling out of our skin.

How everyone needs honest work. Everyone!!!

I didn't do a great job explaining the presentation. But I did enjoy it.


7:47 AM  
Anonymous Stephanie said...

Bravo, Estee!

I've been off-line for a while now, but now am blogging again. I'm glad to find that you're still hard at work.

6:41 AM  

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