This is… more personal, and more emotional (at least to me, I have no clue if it comes across in the writing) than a lot of my posts. Just so you’re warned.
Julian of Amorpha replied to my last entry, talking about how people also try to discredit the writing of children, too, saying “A child could not have done this.”Which reminded me of a very annoying fact of my life, that I’d never fully connected together with this before. As a child, I could do things that children weren’t supposed to be able to do, too. Or some adults.
Not that I knew it, it’s even noted in my records somewhere along the line that I showed utter lack of awareness that I could do things other kids couldn’t. I was more aware, if anything, of all the things other children could do that I could not seem to do. But other people were very aware of it. And I didn’t much enjoy the ways they showed that awareness. (Being officially labeled an “idiot savant” is the least of it.)
I have a friend who was the women’s chess champion in her state at the age of fifteen. She refuses to play chess even at the age of fifty. I understand why.
I know this may sound weird for a blogger, but I hate being on display. Or rather, I hate certain things that being on display tends to entail. I don’t mind the actual fact of exposing my ideas for other people to see. I don’t mind the fact of communicating. I do mind… having to explain over and over again that yes, people like me can do the things we do. That it’s not particularly unusual among people with my brain configuration, etc.
Being a non-speaking autistic adult writer has a lot of utter nastiness in common with being a child prodigy. It’s sometimes worse in person, because on the Internet all you have is my word for the fact that I can’t do such-and-such and look like such-and-such. In person, people see a massive contrast between how I look and how I write, so massive that sometimes they block one or the other out to just not have to think about it. Or, to consider me amazing, without even knowing me, and not because I’ve done something well, but because I’ve done something well for a retard. It’s sort of like doing something well for a child. I almost prefer being attacked, to being praised and having no clue if I’m being praised for doing something well or praised for simply not being what someone expected me to be.
I know, of course, that there are ways I could avoid all this. I could avoid showing certain abilities in public. Sometimes I do. There are things I can do, and never do do, at least not in front of anyone, because I don’t want to deal with the fallout of the contrast between people’s expectations and what I am. No, they’re not things that would make me “more independent” or anything like that. They’re just weird little talents that I’d rather not deal with people’s reactions to. I’ve said before that I’d do them, if I could just not be me while I was doing them, and therefore not have to let anyone know that the rest of me is in total opposition to the sort of person they’d expect to do those things.
But I can’t always avoid it. I went to a sports event for people with developmental disabilities, and I did as crappily at most things as I expected, and then I picked up a badminton racket. And I’d never played badminton before in my life, but I kept beating the non-disabled staff (and they rapidly stopped trying to go easy on me), it was like all the links from perception to action came together in badminton. And it was a lot of fun. But then I was thinking “Oh great, I hope nobody makes a big deal out of this, I want to just have fun.” And it is fun. I enjoy the feeling of totally merging with sensation and movement like that. But I don’t want the “Wow you’re amazing for a disabled person” crap, nor do I really want a lot of recognition for it, I want to enjoy myself, or do my job, or whatever it is I’m doing at that point.
I also know that the way I’ve chosen to lead my life often leaves me with little choice but to sometimes bump up against those contradictions, and bump up against them hard. If I do advocacy in person, which I do, I’m going to bump into it right there. I sometimes use the contradictions in people’s heads to whatever advantage I can, in fact, in getting a point across. It’s necessary given the message I’m trying to send, and the medium I have to send it through. But there’s a downside, and the downside is not something I often talk about.
I’ve given speeches. Decent speeches, as far as I can tell. And then been so wound up afterwards that I’ve spun around in circles, meowed at the top of my lungs, flailed, banged my head, paced randomly, body-slammed walls, lost all connection to what the world meant except patterns of light and shadow (that my body then chased all over the place), screamed, and peed on myself (not necessarily in that order or all at once). With full awareness that many people were watching and would use my “weirdness” later on to amplify the supposed amazingness of the speeches.
In those situations, it seems like performing, even though it isn’t. Because people’s reactions are to the imagined contradictions, and people’s reactions are at times strong and overwhelming. I wish I had a transporter to disappear after speaking engagements sometimes. Not because of stage fright, which I don’t really have much of, but because of the “Holy crap it’s a walking
talking typing autistic person” response. I’m sure even autistics who don’t show up in quite as glaring contrast to people’s assumptions, know exactly what I mean when I talk about that response, because at times it’s inevitable in being openly autistic and doing public speaking.
Well they offer you money, but money don’t mean much to you
And they feed you with flattery, to get you to show them the things that you do
And you’d like to say, “Leave me alone, would you all get away!”
And you wish you were safely at home
And you wish that somebody would stand up and say
“He’s a boy, a boy who can’t talk, just a boy, a boy who can’t talk”
— Tony Carey, “Pink World”, also a good explanation why there are certain things I won’t display publicly anymore (flattery, if anyone wonders, tastes like saccharine-coated poison to me)
I wouldn’t mind so much, I think, if this were a world in which there were not the ableist assumptions that lead to the backhanded compliment of “Wow you’re so amazing… for an autistic.” If everyone knew that there is no contradiction at all in being autistic, and writing good speeches, and, uh, doing all those other things I do. If everyone knew, even, that lives like mine existed, lives in which abilities that were there or seemed to be there before are not here anymore, or that abilities fluctuated seemingly at random, and in which I’m okay with that. A lot of things.
And yes, I’m very aware that in this particular day and age, if I put myself on display, I’m asking for it. But I wish there were some other way, and sometimes I wish that society would change just a little bit faster. What I like most is being in the company of people who are not surprised or overly emotionally awestruck by the apparent contradictions — contradictions that exist entirely in people’s heads — in what I can and can’t do, past and present. There’s a button that says “I am not a puzzle, I am a person.” I wish there was “My abilities are not paradoxes, the only contradiction you see is based in your own assumptions, not in me.” Or something.
My choice to reveal my areas of difficulty online is a conscious one. I am aware that in the present day, this has all the consequences I describe above and many more. I know people who choose not to discuss their areas of difficulty, so they will not have to encounter this kind of thing. Online, they can pass, because anyone with a certain level of writing skill is assumed to have a whole lot of other skills, even if they don’t. I have discussed this with some of them, who will talk in private about things like this, but never in public.
And that’s why I do it, I guess. Because I hope that at some point, some kid like me won’t have to grow up with what I grew up with, or face this world in adulthood that shouts “retard” at them one minute and hails them as a “genius” the next, and flip-flops back and forth faster than a ping-pong match. I hope that at some point, my particular kind of skill pattern won’t be considered weird. And people like me won’t have to deal with a choice between unpleasant hiding and unpleasant kinds of exposure and attention. Where we won’t have to be walking freak shows.
I am hoping that if I am an example of someone like this that people can get used to, then it will be easier for others later on. But every time I see my name used as an example of “this ability combined with that deficit,” I’m ambivalent, it’s uncomfortable. And yet I use others’ names in the same way, others who have voluntarily become examples. This is where I separate emotions from political acts: I know that however bad this feels to me, I’ve still chosen to do it, and these are the consequences.
As much as I dislike aspects of doing this, I would dislike it even more if someone tried to paint me as a fragile being who needed to be shielded from all public discussion. I would find it incredibly manipulative of myself, if I talked about how bad this made me feel, in order to avoid the consequences of what I’ve done. I can’t stand it when other people do things like that, make public political statements and then claim to be too fragile to have to deal with the consequences. So please don’t take what I’m saying as that, it isn’t.
I may react with horribly unpleasant levels of emotion to a topic, but I do not ever want to use that reaction to influence people’s responses in a manipulative way. In fact one time someone insisted that my emotional reaction meant that they had to avoid saying things that upset me, and that I was conveying to them that they should not talk about those things. I argued with that person. I told them that if I didn’t want them to talk about those things, I would tell them, I would not just display a strong emotional reaction as a hint. I told them that I may react strongly but in no way did I want that to make them feel like they’re obligated not to disagree with me.
I don’t like it when others do that kind of thing (“Here’s my opinion, and you shouldn’t contradict it or I’ll get very distraught/ill/etc, but you still have to listen to my opinion, and if you do contradict it I’ll not only be distraught/ill/etc but I’ll go to other people and tell them what a monster you are while claiming to be an infallibly nice person myself, my niceness being the reason that I’m so fragile and you’re so mean, etc”) and I don’t want to do it to anyone. My reactions exist, and I don’t always hide them (although I do believe in the “there’s a time and a place” thing), but they are my reactions, not signals to you to shut up. I know that there are real consequences for saying the things I say, and not always enjoying them doesn’t mean not accepting them in the “unpleasant but inevitable” category.
But I do want to get across that there’s a definite cost in this kind of situation. And not a trivial one.
I hope that this has made sense. This has been one of those posts where there are all kinds of depths and details to what I am thinking, but my writing only shows a pale cursory reflection/summary of those. There is so much more to this subject to cover, but it’s too emotional for me to jump into very far right now. I once, a long time ago, wrote a post on something related to this, and deleted it, never posted it. But, as I said in reply to someone earlier, I’m sometimes more honest than I want to be. And I do think there is a use in mentioning these things, even if only half-formed bits of my thoughts manage to get out. But I do, seriously, hope it makes sense, and hope that the parts of it that go beyond my personal situation are recognizable.
I have a few good friends, some human and some non-human, who don’t regard anything I do as a contradiction or cause for syrupy praise or astonishment. I love them for it. For them, I don’t have to perform, I don’t have to hide, and I don’t have to put up with a choice between the two or the appearance of one or the other. And I’m guessing the same is true in reverse.