Thursday, August 26, 2010

Shakespeare, Hemingway, and Autism

To be or not to be.
To have and have not.
Which would you prefer?

Dave Beukers - a musician, college graduate, and autistic person - writes about the difference between being autistic and having autism:
It is this distinction in my mind between “having autism” and “being autistic,” this simple change in turn of phrase, where I personally determine my attitude towards it. As a possession, it seems simply thrust upon me as an  unnecessary burden, one which I would be better off without. As a state of being, it is a lifelong journey, a beautiful cycle of try, fail, and try again from which I learn as much as I can, wherever that ends up taking me. It is this thought that has turned me from a victim to a victor and given me hope for my future, because as long as I “had” autism, autism actually had me.
To some commenters, this perspective was illuminating and liberating as they, for the first time, said "My child is autistic" and started allowing him/her to be instead of waiting for a cure to something s/he has. Among the commenters was the concern that being labeled as "being autistic" rather than "having autism" limits the potential people see in her child: "I don’t want autistic to define all of his behavior or who he is because sometimes he can just be a creative, contrary, loving, naughty, smart, sly and silly little boy – and sometimes none of this has anything to do with autism."

I feel like this is part of a set of discussions we have in society. Race and gender are on another side of a similar coin. I have yet to hear anyone argue "I'm not black. I have blackness." or "I'm not a woman. I have femininity." These are parts of who we are, but only parts. A large part of the problems of racism, sexism, and other discrimination is letting one facet of who we are or someone else is do the defining.

So how do you phrase it to accomplish both? is dealing with another version of the same problem with its campaign of slinging several short statements together. "I am well-read. I have a flair for decorating. I am a worker ant." Can you make that work in normal conversation? Rather than "my cousin is autistic" or "my cousin has autism," "my cousin does stand up comedy and is autistic." But you still run into that is/has problem. A different news story used the phrase "living with autism." The potential difficulty is that both the autistic person and the people living with the autistic person live with autism... in very different ways, some of which can be taken wrong.

I once tried to start up a game of "How aren't you today?"

I'm not particularly avian today.
That's interesting. I'm not single-celled.
Me neither! But I'm closer to being single-celled than I was last year.
I'm glad that diet worked out for you....

You could find a lot of common ground that way. The thing I realized, though, is that we're already pretty good at playing that game, but only in a depressing kind of way. Magazines and TV provide numerous suggestions: not pretty enough, not smart enough, not rich enough, not masculine enough, not...

Behavioral econ and psych have done a lot of work on framing effects. I wonder if there is a framing effect between being and having autism? Good luck getting a large enough sample together.

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