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A lesson in terminology. November 10, 2008

Posted by speakingaut in advocacy, language, medical, sensory integration dysfunction.
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When a neurotypical (not just non-autistic, but completely neurotypical) person has asthma, he or she is asthmatic.

When an autistic person has asthma, it’s a comorbidity.

When a neurotypical person complains of pain, it’s probably a symptom of a disease.

When an autistic person complains of pain, it’s a because he or she is autistic, and nothing more.

When a neurotypical person wants to be left alone, he or she wants to be left alone.

When an autistic person wants to be left alone, he or she is antisocial.

What’s wrong with this picture?

(Disclaimer: I know these don’t hold 100% true, but this is an exercise in how profoundly a single diagnosis can change society’s view of a person, so bear with me.)

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Me zero, big bad world one. November 6, 2008

Posted by speakingaut in advocacy, outside looking in.
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(Warning: foul language ahead. Not a lot of it, but it’s there.)

I have had it up to here with being forced to hide a vital part of myself in hopes of finding employment. Especially since it doesn’t work.

I am sick of continually being told how much people would love to hire me, except I’m “just not a good fit.” (At least I’m in good company; that’s the excuse companies use on anyone when they don’t have a legitimate, non-illegal reason for not hiring anyone who’s visibly different.)

Perhaps more importantly, I’m at the point where I’m mostly sure it is just me; that I’m just not going to get hired for anything full-time or permanent, no matter what I do; that even if I keep trying, I may as well never actually hope to amount to anything; that I may as well go from job to job to minimum-wage job like so many autistic spectrum people before me have done. I may as well accept that my best option for health care is “don’t get sick.” (One perk: I hear the monthly premiums are low on that plan.)

And you know why I’m not planning to give in? Why I’m going to cry myself out and then pull myself right back up?

I’m doing it for you.

I don’t want to sound like a martyr by saying this, because that’s certainly not how I see myself. But if — WHEN — I get my career started, it’ll be that much easier for the next autistic person to apply for a job there. People will get to know me and realize that I am just as much a human being as they are, and with luck and hope, they will carry that knowledge on in life.

The Law of Unintended Consequences applies here as well, but in a good way. If things change for autistic people, the world will be easier for other non-neurotypicals. I live for the day when neurodiversity in all its forms (infinite neurodiversity in infinite neurocombinations? Nah…) is so commonplace that when somebody asks “So, what about that Alice person? Isn’t she weird?” and the standard reply is “No, she’s not weird. She’s just Alice.”

It’s just not fucking fair that any group of people anywhere has to prove its humanity at all. Ever. I’m going to say this once, and I’m going to say it clearly: FUCK. THAT. SHIT.

My writing this likely isn’t going to change anyone’s attitudes, aside from my own (I feel better already), but with hope, my existence will.

On self-advocacy, feminism, and teamwork. August 29, 2008

Posted by speakingaut in advocacy, politics, social.
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(This post is the reason I’ve not posted all week. I’ve had it stewing for that long. It’s going to be slightly more political than my norm, but not in a “vote for $PERSON!” kind of way.)

Autistic self-advocacy, even in the collective sense, is not enough.

Don’t get me wrong. I love it. I really do. (In particular, these guys are just awesome.)

The problem is credibility in the eyes of the general neurotypical public. No matter what we say, or do, we’re not the ones who make the laws. Autistic people aren’t going to make up the majority of the human population. Even if every autistic person in every single agreed on every single issue, we’d only make up 0.6% of the voting and lobbying public. That’s not enough.

I’m not saying we have no voice — if I believed that, I wouldn’t be writing — but that we don’t have the numbers to succeed on our own.

Politically and socially, we need neurotypical people. Right now, the autism advocacy groups that are run entirely by neurotypicals are the ones with the money. They’re the groups that have the political clout to do big things.

Right now, autistic advocates are seen as a “splinter group.” In the Good Morning America spot on the neurodiversity movement last May, the anchors were absolutely amazed at the very existence of autistic people who don’t want to be neurotypical.

We need to work with these groups, become part of them. Have any autistic advocates tried to join Autism Speaks and get elected to their board? One person joining it probably wouldn’t be able to enact change. Neither would two, or five, or ten. But if enough autistic people work with them from the inside, maybe something useful could get done. But it needs to be a group effort.

Don’t get me wrong. I don’t at all condone the work Autism Speaks currently does. But I believe that as long as they exist as they are, they’ll be able to discredit us, and right now, they have the brute force to do that in the minds of a lot of people.

It reminds me in many respects of feminism in the last century. In college, one of my classes studied the rise and fall of the feminist movement in western society. The professor made one excellent point early in the course: he said that when there was just one main point of contention — women’s suffrage — the movement was unified and remained strong until it achieved its objective, but that once there were even more causes covered by the term “feminism,” the movement splintered and weakened. It didn’t have a single point to push at and weaken its opposition. It tore itself apart. Can women who oppose abortion call themselves feminists? What about women who support pornography? Or women who choose to marry right out of high school? (The answer: Yes, but there will always be a bevy of other feminists saying they shouldn’t.)

On the one hand, it’s good because we’re able to discuss these things. On the other, it’s bad because it’s that much harder to get anything done.

Nancy Pelosi was recently in town, and in a talk she gave at the world’s best bookstore she said that the moment she knew she had “made it” was during her first meeting with the President and his staff as Speaker of the House. Pelosi, The President, the Vice-President, and a handful of other staffers were sitting at the table, and she described a feeling of being “crowded.” She said she felt that Elizabeth Cady Stanton, Lucretia Mott, Susan B. Anthony and the spirits of every other woman who’d fought for this behind her, saying “It’s about time.” But it wasn’t that story that got to me; it was what she said afterward. (And here I’m paraphrasing because I’m working from memory.) She said, “And I didn’t get into that room because I was a woman. I didn’t go up to my fellow representatives and tell them to vote for me because I’m a woman. I did it by doing the best job I could possibly do and letting my work speak for me. They chose me based on what I’d done and on what I promised to do.”

She’d endured being ignored in her early weeks as “the most junior representative” whom nobody recognized. Even as recently as twenty years ago, her male colleagues wouldn’t ask her for input, even conversationally. Even when they were talking about childbirth. But she didn’t give up. She worked to change the system from within the system. And she did the best work she could possibly do, and look where it got her.

That’s what we need to do, people. The principle is exactly the same for us as it is for modern feminists. It’s the other major point that stuck with me from the class I mentioned above: Ultimately, it’s always been the feminist groups that worked with men as equals rather than discounting their power who have made progress in the world.

What we need to do is either get a large number of autistic people to join one of the existing advocacy groups, or start a new group side-by-side with neurotypical people. I recently spoke to one neurotypical parent of an autistic child who said she felt demonized by the autism rights movement. This shouldn’t be our intention, people. If we drive neurotypical people away, all we do is make ourselves an island. It doesn’t liberate us; it traps us. This should not be an us-versus-them situation. Her concerns are just as valid as mine. So it comes down to a choice: do we stand in our separate corners and pull apart, or do we find what is common in our cause and work together to achieve it?

The only people who are going to “mainstream” us is ourselves. And we can do that in many ways, but ultimately it all comes down to being a part of this world to the best of our ability, however much that is. It means voting. It means doing what you want and need to do, even when you know people are going to stare. It can mean juggling oranges in the produce aisle, if juggling is your thing. The specifics don’t matter. The point is, being autistic in a world full of neurotypicals doesn’t have to mean losing oneself. They’re going to have to adapt, and so will we. So why not do it together, so we all at least know what to expect?