2:50am June 14, 2013

I am very grateful.

That there are enough autistic people speaking out these days that I no longer have to worry.

I no longer have to worry that I am the only autistic person likely to post most of my opinions in a public enough place for people to just maybe, possibly, if they know where to look, see them.

No. Seriously. There was a time when the online autistic communities were tiny. Really tiny. And the vast majority of them were focused mostly on self-help. Even the self-advocacy groups often leaned in that direction. Which is okay to focus on (I co-run a group on daily living skills myself) but it is not the same as focusing mostly on our human rights.

And even though autistics.org was tiny and stuff, it was focused largely on human rights and that made us unusual.

I didn’t even realize people considered me a leader. I just wrote my opinions and Laura published them and I managed to convince myself that I was not doing anything significant. That I was just writing what I wished others would write. Or just doing what I thought was right. I didn’t know how many people were watching and caring what I said. If I had, maybe I would never have written it.

But I remember for ages feeling all this pressure. Because not a lot of people were saying what I said. Or not anywhere public. So I felt obligated to always write because often nobody else was going to say it. Not at the time anyway.

I don’t think a lot of autistic people in these internet communities today realize how good they have it. That’s not intended as an insult. It’s just…

You guys have your choice of multiple obvious self-advocacy groups. And of multiple obvious groups that focus on a wide variety of other things. And multiple groups in general. It used to be, what, ANI and InLv and your choice of parent-run groups to attempt to get something out of? Those were the main options. Often the only options.

And if you wanted to speak out on a topic… Often nobody else was gonna do it for you. Which was a huge burden. Because…

For me anyway, it meant honing skills that are not my natural skills, in order to speak out on topics nobody else was publicly discussing. It meant sticking my neck out with few people having my back. It meant taking credit for a lot of things I wasn’t even aware I was getting credit for (and may have argued with had I known), but also taking most of the flak, especially when my opinions were unpopular or unheard of.

I didn’t step up because I wanted credit or prestige. I stepped up because nobody was publicly saying what I wanted to say. Nobody. I wonder if many people can imagine that now, in this world where you can make a blog or a tumblr with the click of a button. Where when people are saying things, generally other people are saying them too. Where it’s actually possible to get into these things for ego driven reasons instead of just to get a target on your ass (even if that happens too).

Hell, right now my opinions are still not always the most popular ones. I may agree with some fairly popular opinions in principle. But at the same time, my opinions often have subtle differences.

And yet… I can still often point to at least a handful of people with opinions almost exactly like mine who are willing to share it. And when I get less exact… I can find dozens, even hundreds. Both the handful and the dozens were unheard of at one point in time.

So now… It’s possible, when I’m too tired, to stop and say “Someone else will say it, I don’t have to.”

You can’t imagine what it’s like, not to have that. Sure, there was a community even then that opposed cure. But other than that, many of my opinions, it was say it or wait years for someone else to say the same thing. Many of the opinions that are a cliché now, were all but unspoken back when I began speaking them. (And now I’ve been accused of speaking them because they’re a cliché… I can only laugh.)

And before me, there were tiny numbers of people speaking the tiny number of opinions that were popularly expressed by my time.

Understand there was that history. That individual people stood up and paid a great price for that history. Just to make popular things as basic as “some autistic people can speak just a little” — which was still CONTROVERSIAL in my time. Not just controversial among those that wanted to discredit us. Controversial in general.

There have always been those that wanted to discredit us and I am far from the first to be treated the way I gave been treated. Jim Sinclair, Donna Williams, Michelle Dawson, and many other people paid the same price for speaking up. At one time you paid that price even if your opinions were what today would be downright conventional. Autistic people couldn’t HAVE opinions, not at all, not even a little, was what practically everyone thought back then. Not just the enemies of self advocacy groups. Everyone. People didn’t even know self advocacy groups of autistic people existed or could exist. That was still controversial when I came into these communities. Also, there were people (including some autistic people) who lived to believe they were the only real autistic people who communicated, who stalked and targeted any autistic person who came to prominence, who slunk away from the community when everyone realized what they were doing… only to come back once everyone had forgotten them, and target me and other people who had newly risen to prominence. That was a calculated move. Their actions towards us were neither new nor innocent. Few but their old targets remembered.

It’s important to know your history. Its important to know that there was a time when barely anyone voiced the opinions that are clichés now. That autistic people paid a price for every single opinion that has become commonplace even among people who wouldn’t in a million years call themselves self advocates. Like the idea that autistic people can think, have opinions, or communicate, EVER. People like Jim Sinclair paid dearly for that. Organizations like the ASA, which now employs autistic people, were involved in stalking and discrediting early self advocates just for saying they were autistic, it didn’t take much more than that. We had few people in high places on our sides. ANY of our sides.

People don’t know of our roots in the disability rights movement and the developmental disability self advocacy movement, both of which many current people try to distance themselves from.

People don’t know what it was like… I consciously remember coming across crappy gay or lesbian websites. And thinking, “I wish, I dearly wish, that I could see the day when there were enough autistic self advocacy websites that I had the luxury of dismissing even a single one of them as crappy.” I was trying to imagine today’s world and I couldn’t. If you weren’t around back then… Try to imagine the world as it was back then.

If I were fifteen years younger, I might never have taught myself how to express my thoughts so well, so precisely, in language. (Yes, I could create detailed sounding language back then, but making that language connect to my thoughts, rather than the echoed thoughts of others, is a skill I paid dearly to learn.)

Because… Today I’m not sure I’d need that skill so much. Today I’m not sure I’d have needed to become a so called leader in the self advocacy movement. Because there are so many other people voicing those thoughts. So very many leaders it’s dizzying to think about. So many people who take for granted beliefs that I fought hard for, and so did many people before me you may not even have heard of.

And that’s a good thing. And an amazing thing. You may not even realize how good and amazing it is. But it is.

(You may also not realize, because it defies the mythology that has grown up around me, but I’d far rather just have been an artist than an advocate, let alone an advocacy “leader”. Also that there was a time I could speak some of the time and everyone knew it and I was known more for my opinions than as “that autistic person who types”. Also that my well known autism video not only wasn’t about autism, but would have meant the same damn thing if I had still been able to narrate it orally. Oh well.)

Anyway, I’m not writing this to chastise anyone for not knowing the history, even if I marvel at how quickly this community can forget things.

I’m writing it because I’m so damn grateful that there are so many people out there saying what I would want to say, that this burden has been considerably lightened. Even though my opinions aren’t always the most popular ones, there is always someone now who shares them. If you can’t imagine it ever being different… I can. And I am grateful for the existence of tons of people saying and doing things that are really important to me. And that goes even for people I don’t especially like on a personal level. Liking people isn’t the issue, the fact that people are lightening the load for me and for each other is.

That is especially meaningful at a time in my life when I don’t have even the fairly small amount of energy I used to have. When I keep ending up in the hospital. When I see doctors more often than other sorts of people.

But seriously try to realize how amazing it is that there is anyone out there to agree with you on any of these things. Even when the agreement isn’t exact or precise it is still agreement. You still likely have other people voicing views similar to yours. Even when your viewpoint is, like mine, not always the majority one. Remember also that if you are an autistic person using words in any form, no matter what you are saying, even if you think you hate all self advocates (no matter how limited some self advocates have — inaccurately — tried to make that term)… Remember that autistic people once paid really large prices just for the idea that you can think or use words.

I am so glad all this exists because I am exhausted.