Tuesday, March 04, 2008

Proud to be me

If you haven't read the latest article from Wired, go have a peek. It has its ups and downs, but its always good to know where the ups and downs are.

One comment (of several) that struck me was attributed to Fred Volkmar: "[he] likens [the idea of autism as a difference instead of a disorder] to telling a physically disabled person: 'You don't need a wheelchair. Walk!' "

This struck me because it has nothing to do with the idea of difference at all. None. Zero. Zip.

Nothing in the neurodiversity movement or the "difference model" says autistic people may not need supports. What seems to be said is that, just as a person who may need a wheelchair to be mobile is still human, so are autistic people. An inability to communicate does not mean a person is stupid. I know lots of people with Ph.D.s who are stupid, who speak for a living. It's not about telling the person in the wheelchair to walk. It's about making sure they have a fabulous wheelchair and ramps and that the doors are wide enough to get the chair through. It is understanding that a person in a wheelchair is mobile, they go out to lunch, go to the library, may need to go to the hospital.

It's about not expecting autistic kids to take SOL tests without appropriate supports. We don't ask the blind child to take a test without providing the test either orally, or in braille- and if in braille, we make sure they have been taught braille. We help them to be independent. Why should I ask any less for my child? Either child?

In a related blog entry in the NY Times, one of the commenters thought it was a "stretch" to have an autistic pride movement because "Disabilities are obstacles to anyone who wishes both to be a part of society and to function as an autonomous, independent adult, and the cognitive and communicative dysfunction that typifies autism is severe."

First, I take issue with the idea that there is severe cognitive dysfunction. This goes with the idea at 70% of autistics are mentally retarded... which we are learning is just not the case. I suspect mental retardation is no more prevalent in autistic populations than in the general population. However, this may be a problem to determine, as anyone with a communicative dysfunction or disorder is often labeled "mentally retarded" in our society. Heck, my Andy's articulation problems would at one time have slapped him with a label of being cognitively deficient or impaired! A person with a stutter may need speech therapy, but does that mean they are intellectually challenged?

Moving on to the point; what's wrong with it being a "pride" movement?

So much of the literature on autism is negative. That is part of the point of the Wired article- all this negativity ignores what autistic people can do, in favor of what they can't do. Funding is not for understanding, it is only for fixing. I still have no idea how you can even try to fix something if you can't see if or how it is broken, so I would think there would be more money trying to figure out how brains work, and how the autistic brain is different. But there isn't. Very strange.

I have wandered off the point again: pride. I certainly hope when Joey grows older and starts to explore himself and his identity, he can find pride in being Joey. Pride movements are not about fitting into society. They are about identity politics. It is about being able to seize control of labels and being who you are, and creating your identity based on who you are. There is nothing inherently evil in being autistic, it is an inherent part of who Joey is. Why not be proud of being who he is?

As Rachel says at Signing Time:
It doesn't matter what you look like
The things you can and cannot do
Just be a boy or be a girl
Feel proud that you are you!

What's wrong with that?

Joey has just as much right to be proud to be Joey as you have the right to be proud of being you. May he seize the labels and take control of his own identity with the same strength of character and joy of living as anyone else. People who love Starbucks. People who are Americans. We have a Welsh Society here, those people couldn't help being born Welsh. We have a fabulous deaf community here, and those folks didn't choose to be deaf. But there is power in seizing who you are, just as you seize the things you do control- just like the Mommy Club, the Bowling League, or the Western Line Dancing Society. We create pride movements and identities every day. Don't deny that to someone just because they don't share your identity.


Casdok said...

You make some wonderful and interesting points.
Lovely to read something so positive as you say there is so much negative stuff out there.

Stimey said...

This is a wonderful post. I so agree with this. I don't just hope my Jack is proud of who he is, autistic and all, I EXPECT him to be proud. I love your words here.

Club 166 said...

Nicely put.


Sharon McDaid said...

I love it!

I am raising my children to be happy in their skin and proud of themselves.
In the words of Dr Suess in 'Happy Birthday to You';
"Shout loud at the top of your voice, "I AM I!
ME! I am I!
And I may not know why
But I know that I like it.
Three cheers! I AM I!"