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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

Friday, December 28, 2007

 

Hey Baby, What's Your DNA?

If you've been wondering why I haven't written or responded to comments, we are on vacation. I have not had frequent access to a computer. It is wonderful to step back sometimes and just watch Adam and enjoy him. We play in the sand, we do our thing, regardless of the relentless ramblings of a media that won't let us forget that there is something nearly surreptitious going on without our realizing it, like an unrelenting wave that, when it recedes, it only undulates back again.

Latimer, Judge Rotenberg Center (the article in the New York Times that seems to justify, again, it's existence because kids are "too tough" to handle), and today's rather interesting but also perturbing article in the NYT (sorry, I can't link to articles on this computer so search for December 28th's paper), on variations of DNA. All of it would make you think there there are serious epidemics going on rather than science beginning to find the distinctions between us. Will it really help us to assist our children? Will the barrage of labels really serve to understand various individuals with disabilities?

I haven't uttered "autism" once here, because it won't make any difference. Adam plays, he swims, he tried to kiss his first girl (other than his mother and grandmothers), and more. No one is passing judgement on him here, even if he can't speak that much (or is afraid to because he may also be so aware that it is more difficult for him). I don't feel the need to justify him or his way of moving and being in the world. As my mother-in-law can attest, he is "magnificent."

My friend with two disabled children is here too. She said to me last night, "it makes me so sad to think that there won't be any more people with Down Syndrome in twenty years." I think she has summed it up for many of us parents with genetically different kids. We don't see the problem, here. (Well, I can think of a couple of bloggers who think there are major problems, and as they are parents themselves, I cannot relate to them whatsoever). It is only the medical profession and the media which profits from such a gaze -- the medical gaze, if you will.

If you decide to read today's article in the New York Times, you might be thinking something like me: I can imagine a day when our kids are sitting in a bar, having grown up in a generation of label fanatics, thinking of themselves as quirky, maybe even deficient and living to tell about it. Hopefully they will have rationalized it and come to define themselves on their own -- without their labels. Adam may ask to buy a girl a drink and say, "Hey baby, what's your DNA."

But with the undulating wave of gloom that persists -- be it the Planet in Peril, the wave of health epidemics for which we must DO something, I can only hope for such wonderful sarcasm and such a strong sense of self.

2 Comments:

Anonymous fw2 said...

My "just" 6 yr old never said a clear word all of Boxing Day. At bedtime he wanted a story. I put him on his Great Uncle's knee with a Gr 1 level story. He likes to have someone read one page and he reads the next.

Priceless..... my Uncle was just floored at how well he read and understood the story.

Never judge a book by it's cover, nor it's DNA....

Got a note home from the OT just before Xmas, they are going to teach him to keyboard properly after Xmas. He's mastered "hunting and pecking" and his Writing w/ Symbols program.

S

10:32 AM  
Anonymous Anonymous said...

I love your writing! It's strangely calming for me. Maybe it's because we share so many feelings and experiences. Thanks for including my thoughts in your blog.
SK

1:15 PM  

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