Thursday, February 7, 2008

Tokenize Me?

Okay, I don’t know. Maybe I’m one of those people who just like to complain. I say we need representation. Autistic adults need to have a voice in the decisions being made about services for autistic people. I get angry when we are not included, when agencies claiming to serve autistic people have no autistic representatives. What am I willing to do about it? What can I do?

Lately, I’ve been invited to sit on advisory boards for two organizations. Now I’m thinking, what do they want from me, a rubber stamp? Crip-on-a-stick? A name they can use to say, yes, well, we listened to this person, sorry she didn’t say what you thought she would, sorry we all disagreed with her, but we did listen, here is the evidence, sorry about your luck. Sorry.

There is a line I fear crossing. It isn’t well defined or stationary, but hovers always near the edge of consciousness. More general than token anxiety, it has to do with power and membership, identity and authenticity. Who am I, if I am not in some way the Outsider, the Other? And who do I become if I make the decision to join something?

How willing am I and how willing should I be to participate in systems I see as so deeply flawed that really we might be better off to dismantle them and start anew? How willing am I to work with members of groups who have not considered our thoughts important enough to seek out before? How able am I to hold onto my own truths? I am not naïve enough to consider myself immune to the pressures of Groupthink. Why would I not fear contamination of a mind which would then not recognize itself as contaminated? How can I share what I know and what I believe, and not expect to have it twisted and packaged as What Autistics Think: The Pretzel Version?

That’s a lot of questions, and not even half of them.

I wrote about the Supported Employment organization, APSE, here. That one was a relatively easy decision. I’ve had time to get to know many of the participants in my state. Lots of disabled people are involved. The positions they hold are as good as the jobs of their non-disabled peers. I’ve talked to some of them about their experiences as well as their beliefs, their politics. I have gotten to know the officers here; I am comfortable with them, nearly past the stage of suspicion. So yes, I can fit here, at least for awhile. I really don’t question my purpose or what they want from me. All of this could change, of course.

The other organization is a trickier question. It is specific to autism, associated with a university nearby. I have seen positive changes over the past year with this organization. A year ago, I had requested a table at their Provider’s Expo during a conference. I’d wanted to recruit participants for a research study and to distribute literature, including some graphics I'd used on this blog. They said yes to the research, but felt the graphics would be too controversial for their target audience. I felt censored by that, and insulted by the omnipresence of puzzle pieces I’d seen at the tables the year before. I had considered skipping the entire event.

This year, they have invited me to speak at the conference, on a topic of my choice. I have already contributed a statement of beliefs for a resource handbook they are putting together. I fully expected to be asked to tone it down, but that didn’t happen. Instead, they have asked me to expand it. A small trust is established, measured and fragile.

Trust may be the wrong thought here. Possibly, I shouldn’t be considering this if I need it, or if I imagine I need anything from this. What is offered, at best, is the possibility of influence. Expecting more would be foolish. Asking for more is another matter. Asking for much more inclusion in, direction by autistic people in entities claiming to serve them, that is a responsibility.

All of which provides me no answer, but helps me to distill the question: Is this a reasonable way to exercise my own responsibilities?


  1. I say, if you've got the time to do it, and they aren't asking for any rash membership fees, give them a spin, what the hey?

    I also reserve the right to say, Only you can truly answer this one.

    If it turns out to be a bust, I'll be happy to hear that you figured it out, if they seem to be worthwile I'm sure we shall hear more about the endeavor here!

  2. You are really brave to even consider putting yourself out there after so many organizations have destroyed the trust in the autism community. Maybe in a small way, it is starting anew?

    karen in ca

  3. I believed a LOT of crap about autism a few years, even a few months ago. It seems the second organization is TRYING to learn, TRYING to listen. Just not succeeding very well yet. Maybe they're not trying enough, but if you sit around waiting for perfect people who always give 100% before you give them advice on how to make autistic life easier, you may have a very long wait. I used to have this really arrogant attitude "My disability is good because it gives me more abilities than impairments. Yours isn't because your impairments are bigger than your disabilities." Looking back I'm pretty disgusted with myself for thinking that.I'm not making excuses, but it WAS hard to see that the value of a particular abilityis not something set in stone - speech and language are only valuable because the majority of people like and use them, the ability to drive would not matter so much if there were more public transit, etc. It took me even longer to realise that even if certain abilities are more "valuable", people can be equal without having equal abilities. People matter because of what they are, not because of what they can or can't do. That took me forever to work out and I needed it explained to me many different times (with different words, and with forms of communication other than words) and shown to me many times by people who lived these ideals in practice (or tried really hard to live them, anyway.)This wasn't because it was a particularly difficult concept, otr because it was poorly explained. It was because it was totally alien to what I was always taught to think. It's easy to question authority when someone in authority makes an explicit proposition. It's hard to question authority when you are being taught by example rather than words, because you may not actually realise that you're being "taught" anything. Because I was always taught by the example of others that it was important to be talented that talented people are somehow speaicl. I was able to see that I could never even be average in certain areas (largely physical ones, so I taught myself that those talents weren't important and the talents I did have very important (this assumption was arrogant and selfish and based on a non-sequitur - I know I am not inferior, so the things I can do must be more valuable than the things I can't. Therefore, everyone else is inferior. Maybe in a million years the world will evolve so we're all like me.) As I began to make friends with autistics, with people with other disabilites (and gifts), and even *gasp* "normal" people I began to think that everyone has a certain amount of skill allotted to them, and that peole have skills in different areas, I convinced myself that everyone had equal abilities, so everyone was equal. But as time got by and I got to know certain people better, I realised this didn't work. I have an autistic friend who is great at Maths, but I also have NT friends with similar Mathematical skills. Her mathematical ability wasn't the reason her autism was beautiful - autism is not a prerequisite for mathematical ability and mathematical ability is not a prerequisite for autism. She is beautiful because of who she is - in a sense, there's not such thing as "her autism" - there's just her, a person who is autistically beautiful. And the nuerotypical Mathematicians are nuerotypically beautiful. Talents are valuable not just because they are useful/interesting, but because they make people who they are. And the same goes for impairments. That took so long to dawn on me and I'm glad people were patietn and didn't despair of me immediately. If they had, I might never have realised what now seems an obvious truth.

  4. I can imagine it would be a tough choice. I like to think of you sharing your opinions though. Someone has to! But, it does have to be something you are comftorable with. I kinda agree with Patrick's comment. Good luck making the decision!

  5. i'm so glad you wrote about this and are thinking about it. i know that you'll do what's best, even though it's hard to go through this maze..


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