Friday, August 20, 2010

On Being Versus Having

(ignoring domain name, addressing content)

I really (really really) don't like the title to the post -- Do You Have Autism or Does Autism Have You?

Whaaaa. It's asking: are you survivor or a victim?? Neither, doughbags. (Apologies if the title was written by the author, but for some reason, I intuit that it wasn't.)

Along these lines, I'm curious to find out thoughts on Rachel's article here

Everything I am is completely me: I am entirely autistic, entirely Jewish, and entirely female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Rachel blows the Autism Speaks question out of the water, answering their title question with, "I am neither a victim nor a survivor".

I'm ambivalent about how to interpret "has autism" because while I don't "have femaleness", or "have Jewishness", I dont *feel* like saying I am autistic or have autism are either grammatically invalid, and one or the other doesn't imply a straight negative. Although it does describe challenges that I encounter with the world. It describes a particularity of my experience -- in my opinion, in a very general and broad-stroked way. In fact it captures very little of who I am, and I almost want to reject the label.

Maybe that's another post. Unfortunately most of the world doesn't really "get" the difference between "T/truth" and/or social construct (which aren't mutually exclusive), which is such a nuanced conversation that it borders on the esoteric.

I do agree with Rachel. The question (do I have autism / does autism *barf* have me / am I autistic)  isn't valid. One doesn't have to insist that autism is negative or positive, or even essential or non-essential, to question the very question.

In terms of identity politics, claiming of terms, and "what we want to be called by other people", having the debate is essential, privleging autistic voices over the proclamations of secondary or tertiary parties is essential.

I think some of the confusion lies in part ith the evolution of identity politics -- in the disability community in particular? I'm not sure. Like, person-first language and all that. It is a kind of reaction coming out of needing to establish personhood before aspect-of-personhood-that-is-negative. Two things are happening that make this person-first argument less valid or important:

1. The descriptor itself is less of a negative, even if it doesn't become a positive, it becomes a "fact" or "aspect of being"

2. That aspect of being then is recognized as *inextricably linked* with their experience of being human. Therefore it is actually important in terms of recognition of that person's experience. A gay person has a particular experience of being gay. Their experience, if they were not gay, wouldn't be the same if you took that aspect of being away. If we erase this fact we erase recognition of discrimination and hate.

It's like colour-blindness in terms of race. When people say "I don't see the person's colour, I only see who they are", actually they AREN'T seeing who that person is. That person has gone their whole life with the experience of beingness as a person of colour. This isn't a generic experience, therefore growing up in the US South or rural US or urban US or Brazil or Britain as a person of colour is a unique and particular experience. It is inextricably linked to who the person is. Notice that doesn't mean "all of who they are" it just means, you can't take that experience away and expect that person to be who they are. From what I understand, race politics in the US is way different than from where I am, or elsewhere, in terms of how people are thinking about the debate. I think examining how identity politics is talked about in other communities is very important to learning about how to navigate this within the autistic community.

Other people's understanding when they use the word "autism" IS important. It's not simply a matter of semantics, and the semantics matter. Language creates the world, in one sense, and is alive, and has real effects on people.

What would I choose to describe myself, then?

Awesome person. Or person who is awesome. Either one is fine. (takes tongue out of cheek)

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