5:04pm April 19, 2013

About the savior of the autistic community thing:

ETA: please see apology in next post I probably never would have posted this I mean never should have, but I’m leaving it up so I don’t erase my mistakes either.

I’m writing this separately because my tumblr client isn’t even allowing me to post the response to the original post, because my tumblr client is annoying and weird.

She may well mean me.

And that’s the very last thing I’m doing. I’m not into status and I’m not even into the autism community. But I am into pointing out things that I see going wrong, especially if I don’t see many other people pointing them out.

I’m very much not into pointing at specific people and saying you are doing absolutely wrong, at least not often, because that’s not something I can know. In fact I think I do a whole lot less of that than generally goes on within the autistic community as a whole as a matter of course day to day among people.

But I do point out community trends that I see as dangerous and scary and wrong — even ones I see myself slipping into or engaging in at times — because they are dangerous and scary and wrong, not for any other reason.

Maybe this wasn’t intended for me but I finally opened my mouth recently and said things I’ve been thinking for years, in some cases over a decade, but didn’t always have the words to say. And then suddenly someone is saying this about people trying to be saviors by pointing out what’s going wrong.

And I just…that’s so fat from my motivations or the way my brain works that I can’t even… I just can’t, explain why my brain doesn’t work like that, my motivations don’t work like that. My motivations have only ever been to do what’s right, other people have been (to my deep dismay at times) the ones to try to make me into a leader and a savior and a whole lot of other things I’m not and never wanted to be. And then they’ve at times turned right around and accused me of wanting to be those things — the same people, at times, who have tried to make me into those things against my will.

So that’s why I’m a little sensitive around this topic. Because people rarely understand what my actual motivations are. My motivations aren’t always good, mind you. But I can’t stand the idea of being a savior of anything, and I can’t stand being thrust into a position by other people and then accused of getting myself into that position voluntarily. That’s been a source of great pain in my life. There’s so much I’ve never wanted to be, that I’ve never tried to be, that other people have tried to make me, and then… suddenly people think I wanted that all along.

So I don’t know if this was directed at me. But if it was directed at me. Please understand that while my motivations aren’t always perfect and shining and wonderful or anything, and I’d never claim they are… The direction they go when they’re bad motivations is totally far, often the opposite, from some sort of idea that I’m going to save the autism community or any other community.

It’s not that I hate the autistic community, it’s more like I’ve been so wounded by it — and not in the ways people might imagine, often in ways I’ve never told anyone and nobody might even guess — that I don’t trust it the way I trust some other communities. I can’t trust it. It’s got so many booby traps and snares and scary things happening in it, things people may not be talking about enough.

So… I apologize if this wasn’t aimed at me. God knows I’ve misinterpreted several things as aimed at me recently that weren’t, and other people have misinterpreted things I’ve said as aimed at them, and it’s become a bit of a mess. I’m sick and I’m tired and I mean that very literally, my brain is not functioning at its peak capacity here.

But if it is aimed at least partially at my actions… It’s more like there have been things I’ve wanted to say for years and I couldn’t. Either I couldn’t handle it emotionally. Or I couldn’t handle it in terms of getting the right words out at the right times. And when suddenly I’m able to say something I’ve meant to say for years, and suddenly all the right abilities and everything fall into place… Then if I can, I say it. Because I might not get another chance. And because, painful as it is, some painful things need to be looked at.

I don’t really like the culture of calling people out so I mostly talk in generalities unless I think someone specifically needs to be told something specific. And even then my judgement of course can be as wrong as anyone’s. But I’m far more interested in looking at, this particular thing happening in this community is harming or overlooking people, what can we do to change it? Sort of? I don’t know exactly how to put into words what I do mean.

But I know I’ve been looked at as a savior too often for that to hold even the slightest bit of appeal to me. Maybe some people do compete for that status. I honestly wouldn’t know. But I do know that, if anything, if I’m going to go egotistical, it’s generally going to be in the direction of “please let me hide away from the world with a few people I know well and not be a leader and not put myself out there in that way”. It’s something I’ve struggled hard to overcome. And still struggle with. And I know that the opposite is horrifying to me in many ways.

But that’s not how people see me, for such a variety of reasons I can’t even describe them all right now. But it’s what I desperately want deep down somewhere. And that desire is just as messed up as the desire to be a leader and a savior. But it’s not the desire to be a leader and a savior. I don’t think I’ll ever have that desire no matter what I end up choosing to do.

And sometimes I do decide to put myself out there. For too many reasons I can’t even always describe. Mostly because it seems like the only right thing for me to do at the time. But it’s never… I can’t even imagine enjoying it? A lot of people do what we see as the right thing, even when it hurts, even when we’d rather be doing anything else, deep down inside us. And that’s how it feels for me to do these things sometimes. Like something necessary but highly unpleasant.

Anyway I hope that if you thought this of me, you’ll at least trust my explanation of my actual values and desires. And if you didn’t think this of me, I hope you’ll forgive my sensitivity on this issue and my possible jumping to conclusions. But all I’ve ever wanted is to make a good thing better. Status isn’t my thing. Competition isn’t my thing. A friend called me a perpetual outsider, because even when people in a community revere me in ways I don’t even deserve (that I’m not sure anyone deserves, I mean), I never feel truly at home in any community.

The autistic community makes me cautious and wary because I’ve been bitten there in private ways I’ve never revealed to anyone. It’s funny about the autistic community and the vast difference between what I’ve experienced internally, and what people have seen externally. The ways I’ve been most hurt, most people have not seen. The hurt is private and deep. The ways people think of me, and the ways I think of myself, totally at odds. Both the good things and the bad things people think, mind you. There’s so much distortion.

So I can’t feel at home there and I certainly can’t want to be a savior there. It’s too uncomfortable. But I’m not good at keeping my mouth shut when seeing something amiss coincides with being able to talk about what I see amiss. That gets me in trouble both in big public ways and little private ways. It’s not always a virtue and it’s not always a fault either. It just… is. And when I speak up lately, all I experience is relief.

Relief I can finally say something that’s been poking and poking and poking at my brain wanting to be said for ages but I never could, or never would, or both at once. What motivates me the most, I guess, is the intense and often uncontrollable desire to communicate what I see in the world. Sometimes those things are good things. Other times they are bad things. Sometimes they are both mixed together.

For instance, my “Untitled” essay in Loud Hands, that was all about carving out a space in the world for people like me. About celebrating who we are, about making a little place among the autistic community that we might call home, even if we aren’t always noticed as existing, as even possible. And that was mostly a good thing, wanting to celebrate and make place for a good thing, and to communicate meaningful experiences that I and others like me have had, that have to do with the particular ways we experience the world in general. And that’s a beautiful thing to me and I want to communicate about it.

But a thing I wrote recently on tumblr, had to do partly with the same topic, and partly about a different but overlapping group of people. And that had some more negative things to say because… I’ve often seen the autistic communities as wanting to seem more inclusive than they are. And it cuts me to the core because of the differences between my social world and some other people’s, and people not even always knowing that people like the people I have known and loved, even exist, let alone… And it hurts so bad that I can’t stand the hurt anymore and I have to say something otherwise it will eat me up inside that I could’ve said it and didn’t. And it’s been eating me up inside for years and suddenly I could say it, really could say it, all the right words came out… So I had to say it. For them, for me, for all kinds of reasons. But not to be a savior. Just because someone had to say it, because the words came to me right then, because I genuinely care?

And now I’m tired. And I’ve run out of words. And I don’t even know if I did more than talk in circles around what I meant to say, never being able to get the words to mean quite what I wanted them to mean. But it’s better than nothing. I guess when it comes down to it, when I’m selfish, I tend to be selfish in entirely different ways. But given the timing of what was said, and the fact that people frequently misunderstand my motivations, I had to wonder want was meant. And given that I always feel this intense need to communicate the world as I truly experience it whether I think people will believe me or not… I tried that again, here, in this post.

I hope I was totally mistaken and I’m just over sensitive and this wasn’t about me ever to begin with. But if it was. Or even if it wasn’t. This is my explanation — maybe not the best, like a lot f my writing it rambles around in circles — of my real motivations for posting these things. At least, of the motivations I’m able to describe right now. And maybe, even if you didn’t mean me, it’s better that people know why I say things I say, than sit there and wonder, or imagine things up that aren’t there, or whatever people do. But if there was a competition going on for savior of the autistic community, I would run away so hard and so fast it isn’t even funny. Not sure if anyone will believe that but it’s true.

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