Sunday, September 8, 2013

Disability and Genius

Jacob Barnett, a 14-year-old with Asbergers, is a genius. Now I think the smarter-than-Einstein gimmick that reporters use (here's one on an 11-year-old English girl) just demonstrates how little we understand about intelligence and how limited the notion of IQ (the number) is.

That said, Barnett is clearly a genius.

I'm interested in two things here. One is the notion of probability. This little piece opens:
When Jacob Barnett was 2 years old, he was diagnosed with moderate to severe autism. Doctors told his parents that the boy would likely never talk or read and would probably be forever unable to independently manage basic daily activities like tying his shoe laces.
Right. Please note the words "likely" and "probably." Now this seems like poor diagnostic speak and I wonder what the doctors really said. I've spent a LOT of time with a lot of doctors and therapists talking about ranges of development, and no one has ever said this kind of thing about Nico. We talk about therapy.  We talk about trajectory. We talk about challenges. I do believe there are doctors out there who don't know how to talk about disability to parents, but I also believe they are rare. Mostly, doctors speak about probabilities and they should do so accurately.

But the triumphant attitude of proving the doctors wrong is not my favorite approach to these kinds of articles.

More importantly, while I celebrate Barnett's achievements, I think about all the people with Autism who are not functional geniuses. When I advocate for a society that is more inclusive of people with disabilities, and more supportive, I want to make sure that cases like Barnett are leverage for those who are not do not defeat the "likely" or the "probably."

With Nico, we try to keep expectations high, but impose no time-table; we celebrate each achievement, but also prepare ourselves for even small steps to take months or years. Our son is amazing. Is he going to swim the English channel, get a black belt, or dance with the stars? I have no idea, but his value remains regardless of achievement.

One of the enduring lessons of disability literature for me is that life can be wonderful even when it follows non-standard patterns. We celebrate genius, properly so, but I'd like to celebrate the quotidian as much or more, so that parents of children with autism who are not solving quantum physics problems know that their children have a place in our society too.



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