Monday, December 20, 2010

Reply to Shiva's survey

Shiva is presenting a paper soon, and has a list of questions for autistics. I tried to post my answers as a comment, but it was too long, so here's my comment below:

I'm jealous - I was planning to send in an application, but got overwhelmed by schoolwork.

Anyway, survey questions (feel free to quote me):

"1) How would you choose to identify in terms of your neurology (eg. autistic, Asperger's, "cousin", self-diagnosed autistic, etc.) (multiple answers acceptable!)"
 Autistic. Sometimes 'demand avoidant'. Though my official diagnosis is PDD NOS, that label has pretty much no relevance to me. I think there could be reasonable divisions between autism subtypes, but the DSM currently doesn't recognize them. Demand avoidant is one example of such a subtype. Another might be nonverbal learning disability/autistic (which currently mostly overlaps with AS). I'm not sure what others there are.

"2) Do you identify with a particular political "label" (eg. Marxist, anarchist, radical feminist, deep ecologist, etc.) (multiple answers acceptable!)"
 Autistic rights activist. I also call myself a feminist, but that's not a big part of my identity.
 "3) What drew you to radical social activism?"

Well, firstly, my Mom's a feminist, so I was raised with it. My foster siblings/cousins (kinship foster care) sexually abused me, and when my parents found out they took action to protect me and encouraged me to speak about what happened, so I learnt that if you talk about what hurt you, things can change. Then, in school, I was acutely sensitive to my teachers' abuse of power (partly because I'd already been abused, and partly because demand avoidant kids are like that) and the only way I knew to handle it was to fight back. My parents' support ensured that I never thought the school was in the right, never believed what they told me about myself.

With autistic rights, specifically, it was discovering my autism that did it. Several teachers figured something was different about me, one even guessed Asperger Syndrome, but my parents didn't think there was anything wrong with who I was. They finally started homeschooling me, and independently I discovered autism and autistic rights, and at the same time I recognized myself.

"4) Do you think that there is a connection between your neurodiversity and your activism? If so, what do you think that connection is?"

Besides the fact that I'm fighting for the rights of people like me?

Well, demand avoidance definitely is linked to activism. We're like the 'canary in the coal mine' when it comes to power dynamics - what hurts others in subtle, hard to pinpoint ways is blatantly obvious and meltdown-inducing for us. We basically either fight back or go nuts, we can't just put up with it.

"5) Can you describe any particular experiences (whether positive or negative) of being autistic in radical spaces that stand out to you?"

When my mother and I presented at the association for research on mothering conference. The topic was 'motherhood and war' and we were presenting on the war on autism. It was amazing to see all these people understanding what we were saying, and why we were concerned about this. Also, I met a parent whose son had a late diagnosis for the exact same reason that I had - she had to accept neurodiversity before she could believe an autism diagnosis.

"6) Do you think that the radical social movements you are involved in are a) aware of autism and what it means and b) accepting of autistic people? If not, why not?"
 Well, since I'm involved in the autistic rights movement, yes.

Feminists, on the other hand, sort of vary. Some are very willing to listen, others aren't. It seems like in every activism movement, there are two kinds of people: those who support rights for everyone, and those who only support rights for their chosen group.
 "7) Do you think that radical social movements/spaces tend to provide an environment that is better or worse suited to autistic people than mainstream political society? If so, why? If not, why not?"

Autistic rights movements do, mostly, though different subtypes can run into conflict. Other movements are often, but not always, more accepting.

"8) Is there anything else you can think of in your personal experience that is not covered by the above questions, but is relevant to this paper?"



Blogger stevethehydra said...

Hi Ettina

Thanks a lot for your responses, and massive apologies for my extreme lateness in replying to you - i've had a lot going on, both with this paper and other things, and replying to respondents just slipped my mind.

You were one of the ones that we decided to quote - i just wanted to ask whether you wanted to be quoted as "Ettina", or if you had any other preferred name?

If you contact me by email (or leave a comment with your email address on one of my blog posts, which i'll moderate out so it doesn't get seen publicly) then i will send you a copy of the full paper.

3:31 PM  

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