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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, April 07, 2007

 

Endgame


My recent viewing of LUCY – a play at CANSTAGE at the Berkeley Street Theatre in Toronto inspired some real feelings with regards to how our lives are viewed by others. LUCY is not alone at fault for raising arms-length fascinations of autism – movies like Rainman, and others that deal with peripheral views of disability as opposed to films like The Sound and the Fury and My Flesh and Blood which deal with in-your-face, real issues confronting those with dis-abilities. Autism Speaks and their recent parading of autism as horrible fate-worse-than-death scenarios on Larry King and Oprah don’t help. Oh but wait, “my life is better because of my autistic child” recent statements by the advocates who earlier stated how terrible their children were, is making the issues confusing (quite frankly I see no point in being politically correct when you are trying to beat the autism out of the child rather than dealing with the issues and enjoying the child you have). All of it effects our lives deeply:

We go into a store and two women who watch Adam hop to a row of books at the bookstore feel it is their right to stare at him and say “autism,” like we can’t hear them. Friends (with all the right “intentions) feel it’s okay to call out of the blue to proclaim they saw Michael Waldman proclaim that television causes autism, so gosh, it must be true and I better do something quick because I must be a bad mother for plopping my son in front of the telly (like by golly, that’s all we do all day). People feel it is okay to watch every single move Adam makes and talk about autism in front of him, rather than engaging with him. I do consider the media and representations of autism very much a contributor to the way we treat and regard autistic individuals.

There is a real difference between people calling asking “what do you think about such and such,” and authentically trying to understand. But it’s not fair to stare or to assume that all we want to do is talk about autism all day long. We don’t. I may say I don’t feel like talking about it. We don’t feel like being stared at all the time. All Adam and I want is to walk out into the world and to live our lives freely. We want to work, to go to school and live as we want and are able. While one might argue that all the fuss is raising awareness about autism, and arguably, make us able to accommodate autism better, we must also be aware of the dangers are in making people “fascinating” like “pathologies” for our consumption or entertainment, rather than really getting to know us. There are days that I feel like the political chess game called autism is becoming quite boring, and yet ironically dangerous for us not to participate in. It may be a game without conclusion and yet, a game Adam can’t afford to lose.

10 Comments:

Blogger mcewen said...

The atmosphere does seem a little 'war' like at the moment. I feel like I need to pay attention in case I miss some strategic shift, but at the same time we need to 'live' our lives.
A thought provoking post.
Cheers

4:35 PM  
Anonymous Ms. Clark said...

A few years ago I took a class in cultural anthropology. I'm glad I did. I had thought that there was no harm in thinking of cultures as "exotic." Exotic seems harmless enough, but there's a subtle sort of, "Don't you think we ought to take one home and put it in the zoo?" quality to "exotic." No matter how "exotic" some people might seem to us, if we lived with them day after day, they would surely seem far less "exotic."

Autism Every Day, on the other hand in the worst of the scenes makes autistics seem not exotic, but worse than foreign. Alien or evil or something. We are supposed to feel grateful that they want to rid the world of us. Have you ever heard, "Great nations of Europe" by Randy Newman? Singing about conquered people:

"now they're gone, they're gone, they're really gone
you never seen anyone so gone
there's pictures in a museum, some lines written in a book
but you won't find a live one, no matter where you look"

10:41 PM  
Blogger Jannalou said...

Estee,

In the course of making sure I don't waste my time at the University library tomorrow (by checking my list of articles to look up with the journals they actually have in their catalog), I discovered that there are actually journals out there (more than one, in fact) about quality of life. One of them is actually called Quality of Life. I remember you being very interested in the concept, and thought this knowledge might help you and the rest of the TAAProject team in Toronto learn more about the science of QoL.

Because I think, in the end, isn't this what we're talking about when we're discussing autism acceptance and accommodation?

The quality of life of the autistic person.

7:28 PM  
Blogger abfh said...

Jannalou -- no. We're talking about self-determination, about having the right to make one's own choices in life to the greatest extent that it is reasonably possible, without being constrained by other people's prejudices and assumptions.

Horrible things have been done in the name of improving quality of life (the Ashley Treatment, for instance).

9:19 AM  
Blogger Another Autism Mom said...

So far the best show on autism was the MTV special "True Life: I'm autistic" showing three teenagers in different areas of the spectrum. Even though the documentary showed their challenges, it also emphasizes their sucesses and makes the general public relate to them as PEOPLE.

As for the autism wars, yes, it gets old after a while. But I don't see it ending anytime soon.

6:40 PM  
Blogger Zaecus Celestis said...

As I understand it, from reading not personal experience, quality of life is also one of the big reasons for the pressure to terminate when a prenatal test for Down's Syndrome is positive.

5:03 AM  
Blogger Estee Klar-Wolfond said...

Hi everyone,

Take a look at the book I have listed on the right "Quality of Life and Human Difference." I recommend that one. It is certainly a problem in defining "quality of life," and "health related quality of life" as defined by the World Health Organization. The book adeptly points out that the testimony of those with disabilities to say that they do not have a poor quality of life because of their disability is considered to be unreliant, in other words, that those with disabilties are inherently unreliable in what they say about themselves and their own experience. Sound familiar?? We are living this today in autism.

5:32 AM  
Blogger Jannalou said...

Estee, that's what I meant.

abfh, I consider the ability (granted by society) to be truly self-determining etc. immediately raises one's quality of life. Therefore, I do in fact consider human rights activists to be fighting for a better quality of life for people.

Based on my understanding of various disabilities, including Down Syndrome, advocating for things like abortion or "the Ashley Treatment" is not really looking at the real quality of life of the disabled person, but the perceived change in quality of life of the parents.

I could be too much of an idealist, but that's how I see it right now, anyway.

12:10 PM  
Blogger Susan (Ayame) said...

I love your blog. I hope to see more positive acceptance of autism in the future. My daughter is autistic. She's very beautiful and active. In fact, people often don't believe she's autistic. But she is. There's so much stereotyping about autistic people. It makes me angry.

I really hate that the autistic adults out there don't seem to be able to say anything. Why aren't they given a platform to speak. Where are they? I want to meet them, know them and understand what they've been through. I want my daughter to meet them and be able to ask questions.

I get frustrated that as a low, low, middle class American, I have a small voice. I'd love to make PSA's for positive autism. I'd love to host a conference about autism and let the autistic adults speak. I'd love for other parents to be as proud of their kids as I am of my daughter.

I think you're right that it's a game we can't afford to lose. It's like there are people out there who want to make everyone sanitized and the same. It's very scary.

I have to say that on other levels, I feel like the sanitation is everywhere. It's not OK to be fat anymore. It's hard being non-religious (I'm an atheist, so I know). There are wars on so many levels about so many issues concerning people who are a little different from the rest. If you're not "normal," you're not "human." It's scary and it bothers me.

Thanks for your post and I'm glad to have a chance to say something. The community of people who work with autistic individuals where I live is small, but thankfully, the teachers and therapists all see my kid as a person first and not as something that needs to be changed or cured. That's why I'm staying here. It's all about acceptance and since I've found it, I won't ever leave.

2:59 PM  
Anonymous Anonymous said...

How wonderful that you talked about this subject because I fully agree. Even my sister started a huge family uproar when she whispered to my sisters about watching Oprah and knowing that my TV and computer caused my son's autism. And that I should be careful because I will make my younger son autistic too from the TV. Even though we enjoy TV, but we do not plop them down in front of it all day:) Thanks for making me feel better, I really do like to enjoy my children and our life and try not to be consumed by the autism.

2:19 AM  

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