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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

Monday, April 30, 2007

 

Reasons, Rationale and Representation

Yesterday, I attended a function for the arts. Not a minute too soon, either. When the well runs a little dry, one has to replenish. For me, its art and literature that inspires.

A few parents discuss how they do not write about their child, or reveal anything about their own autism, their past. This is utterly fine -- not everyone is comfortable in revealing truths about themselves, their relationships, their families and all that complicated stuff that goes with it. Some autistic individuals fear that information will be used against them, and already so susceptible to scrutiny and hate, I don't blame them. It's really a personal choice about how much one person can take. "Exposure anxiety," is an issue when raising awareness about autism -- while Autism Speaks may have huge walks and people come together, it is much more difficult to physically coordinate an event of solidarity among autistic people and their supporters, for many of these reasons. That is why we must work together to find solutions of accessibility. Online solidarity has certainly changed the face of civil action and we have to keep working.

I have deliberated over Adam's privacy issues over and over again. I try to be careful in how I express myself in order to keep his dignity in mind, but I also try to communicate that we too have our challenges. I never know when I may change my mind about how I write here or elsewhere. Yet, for now, I always come up with the same conclusion: Adam makes me so proud. Adam is autistic. Adam shows me (and hopefully others) that being autistic is really no big deal -- that despite the fact that he needs a little extra assistance here and there, he really is a great kid, with so many possibilities. We owe him, and others, the accomodations that he needs so that he may have a chance. We would ask no less for any other child.

After listening to the concerns of parents with older autistic kids on the Revolution Health conference call, in person and on many of your blogs, I am excited about the future. Here in Canada, we have college courses that are adapted for many disabled individuals. Organizations like D.A.N.I, won't take NO for an answer and are working towards creating employment opportunities for many autistic and other disabled individuals. Overall, the pulse is changing. I find that more and more people are open to accepting autism and including autistic people. I believe that the increase of autism diagnosis is steering us towards an inclusive society, more than any other time in our history. Do I believe this because my attention is focussed on autism? Perhaps. But have you seen many people diagnosed with mental retardation these days? I see more and more kids being diagnosed with autism and parents who want their children to be a part of society. That is the engine I'm talking about here. It should not be an urealistic expection of making autistic kids, "normal," per se, but rather, helping autistic kids to achieve their potential. Let us never underestimate that!

Many people who have never understood autism are reading fiction about autism. While those of us who are involved in autism everyday have many criticisms about how autism is represented, must remember that some novels have begun to change (for better or worse) some naive public perceptions -- many people who read this stuff come up to me and reveal "I never knew that people with autism are intelligent," for instance. This mainly from books like The Curious Incident of the Dog in The Night-Time and The Speed of Dark. Now I could scoff at the fact that others think that autistic individuals are "less than human," "not that intelligent," or come to terms with the fact that this is the first step in changing a perception -- so many people are never exposed to people with disabilities because we are not yet a fully integrated society. There are many hurdles to overcome in autism perception and representation, and our collective diligence in demanding more and better will only help to continue to shape this perception in a positive way.

Ralph Savarese's book Reasonable People is another example of a parent who has embarked with his child, D.J. in changing public perceptions. They have opened their lives, their challenges, and their family so that the rest of us may learn. This is why we share, write, create. This is why art is so important to humanity. Reasonable People is now finally available for purchase.

So, at the end of the day, Adam is my pride and joy. He is autistic. When I tell people he is autistic and their faces drop because they don't know anything, or don't know what to say, I talk about how terrific he is. I smile -- because he really does make me smile everytime I think of him. I remember a time when I knew nothing about autism. I never rubbed shoulders with a disabled individual in my school. Thanks to Adam, I've had to learn and the world has opened up for us. I can also tell you, smiles are contagious and open up the world for others as well.

Last night, I saw this dance troupe (Complexions Inc.)and two of the dancers from NYC came to our home. One of the dancers moved his body like I've never seen. I want to call him "rubber man." But his performance was more beautiful than that. It was as if his body was carving space -- I could see the archs of light that followed the movement of his arms and legs. Just like many shows I've seen, I think -- wow, Adam would love this. Many autistic individuals would love these performances. So, I'm going to start writing letters to the Toronto Symphony Orchestra, theatre troupes and dance companies to have special days where autistics can come, enjoy, whoop and flap. I'm calling it PLEASE DO DISTURB. Since I know from first-hand experience that art can change lives, I feel so strongly that Adam should have access to many performances in his life -- it inspires, enhances, and helps us create our own performance, this art form called life.

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9 Comments:

Blogger hasitall3 said...

That is such a great idea! My son loves classical music but we'd never dream of exposing him to a live orchestra for fear he'd disturb everyone else.

10:47 AM  
Blogger mcewen said...

Your statement "the first step in changing a perception," would be my response too.

As for the public performance option for autistic people - fantastic idea - keep lobbying. From the photograph, it looks wonderful, but it may be some time before I can take my little guys to such a performance....unless of course they're in like company.

Cheers

10:48 AM  
Blogger Zaecus Celestis said...

That sounds... euphoric.

11:50 AM  
Blogger Another Autism Mom said...

What a cool idea. My son loves to watch concerts and plays, the only problem is that he always wants to go up on the stage!!! I'm usually successful in catching him before he gets there, but in many occasions I had to hear from some grumpy security person giving us a hard time.

3:26 PM  
Anonymous Anonymous said...

Estee submitted a beautiful story about her child on Orato.com.

Here it is:

I'm The Happy Mother Of An Autistic Child

Enjoy

3:56 PM  
Blogger bigwhitehat said...

Frankly, I think fiction and television are the quickest ways into the public's heart.

I would like to see more characters on the spectrum.

7:10 PM  
Blogger LAA and Family said...

I love the "Please Do Disturb" idea! I think they may have performances like that in the Washington, D.C. area, but I have not looked into attending with Samuel yet. Some day!

10:33 PM  
Anonymous kirsten said...

The Please Do Not Disturb idea is such a great thought! Good luck.

10:14 PM  
Anonymous Anonymous said...

I just found your blog. I am the mom to a 6 year-old on the spectrum and I am also a choreographer. Why didn't I think of your great idea? LOL! I love it and I wish you lots of luck in making it happen. My son loves performances, too, and while he could probably sit still for long enough to see one and not disturb anybody, he gets so emotionally overwhelmed that he breaks down. I am always trying to figure out ways that he can attend live performances in a "safe" environment.

Cheers,
Karen in CA

9:54 AM  

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