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?