I talked once before about how self-conscious I get, before and after I give talks. I don’t give a lot of talks, but when I do, I’m well aware of people’s responses to the way I look. When I gave my talk on the panel at AutCom last year, for instance, it was near the end of the conference, I had a bad headache, and I couldn’t stop running everywhere and bashing into walls and then lying on the floor and such. I kept thinking, simultaneously, “Do people realize this isn’t voluntary, and that if I tried to stop something worse would happen?” and “Will people think I didn’t actually write this?”
Cheryl Marie Wade writes, regarding her participation in disability theater:
Going from being a person who used to hide her hands with a shawl, which I did, truly in life, for years–would always carry a shawl or a big purse that I could slide my hands under so that people wouldn’t be uncomfortable and I would not feel humiliated by people staring at my hands instead of making eye contact with me, and just the self-consciousness I had about it–to being someone whose anthem was, “Mine are the hands of your bad dreams, booga, booga,” and using my hands as, sort of, the red badge of courage kind of stuff–of just being so sassy, and so out there, and so in your face that you can’t deny me. [...] The more I played the “woman with juice” who was okay about her body, the more I truly became her in life. No matter how political I was, I wasn’t okay about my body.
I’ve spent a lot of my life being told by various authority figures not to do the things I do in my videos. For a time I was able to confine at least some of them to behind closed doors — in school bathrooms, for example, which I spent more time in than most kids — but then with the various demands and changes of puberty I was not. People already thought I was weird, but by then they thought I was even weirder, and I heard that these things were some combination of “retarded,” “psychotic,” “attention-seeking,” and “on drugs” (that last assumption being one that led to my brief period of actual drug use), and at any rate definitely ugly and shameful and pointless. Not to mention the endless litany of “Can’t you see people are staring?” (actually, I can’t), and the physical abuse that has ensued over this stuff.
Even the times when I was fairly still weren’t much help. I still remember being on a field trip and sitting on a set of bleachers staring into a light and not moving. Pretty soon everyone was around me waving their hands in my face and noticing that my pupils weren’t reacting to the light and so on and so forth. When I could move again, I could only move very slowly for awhile. (I was not taught about shutdown, nor the effects of unfamiliar locations on autistic people. I had no idea why this was happening.) When I’m still, I’m apparently too still.
But at any rate, while I apparently appeared not to care what people thought of me (and got a lot of compliments for “not caring what people think,” which seemed to hinge on the idea that if I didn’t want to look like this, surely I wouldn’t), I was actually getting more and more self-conscious about my appearance the more people said things (positive or negative) about it. And that’s never entirely gone away. I’m pretty introverted, and don’t generally like standing out, whether in a good or bad sense. (Which is one reason I liked AutCom. I didn’t stand out there whatsoever, I was neither the most normal-looking nor the most unusual-looking person there.)
Some of what has been considered attention-seeking behavior has been more like attention-avoiding behavior. Many of the times I have tried to disappear, I’ve inadvertently done something bizarre-looking to most people. I can remember hiding in closets and being accused of trying to make people find me, and running away from people only to be accused of trying to make people chase after me. And sometimes I, like the monster in Douglas Adams books, convinced myself that if I could absorb myself in something and forget everyone else, they wouldn’t see me. That didn’t work well either. At any rate, I often find attention, whether positive or negative, complimentary or neutral or attacking, aversive in large quantities. (I don’t mind some attention from friends, but the way I seek their attention is to write to them or something.)
So because of all this, I kind of freaked out this morning when I saw that the “In My Language” video I’d made had reached 24,000 views. This is sort of like how I feel after speeches, except it’s going on all the time.
I know this is a very silly reaction in someone who actually made and put the video out there to begin with. But I like the communication part of it. I like having a message and finding an artistic way to put it together. I like the effect that message has on people. I’m just not so sure I like the little part of that that involves people seeing how I look.
The problem is I generally think, “Okay, I have a message, I have a way to put it together, it’s probably a useful message for at least some people to hear, and advocacy is what I do. So if I’m scared to put it out there, tough. It’d be selfish to come up with a useful advocacy message and then not use it because I’m afraid of something totally inconsequential.” Some people enjoy being looked at so much that they get in danger of letting it cloud their message. I think I’m the opposite. I fear being looked at so much that it could cloud my message if I let it. So I’m very stern with myself about that, and I’m sure most of the time I look like I don’t care.
But I do care, I just try to avoid the self-indulgence of letting that run my life.
Sometimes I think though that even the people who like what I write, make too much of my appearance, as if it in itself is a communication of something other than what it is. I look like I look because this is how I look. Yes, my responses to my environment are a lot more meaningful than people give me credit for. But at the same time, this is just what I look like. This is what I have to look like. I don’t get a choice, unless I were to go back onto the brain-destroying neuroleptic drugs that did admittedly make me move around less (but did nothing to stop the reasons I needed to move around, and which may have contributed to some of the level of unusualness of my appearance).
The way I look is not a statement of severity of anything in particular, and it’s not a claim to any other traits besides my appearance. It’s not amazing that I look like this and also write. I know people who look like this and also speak. I have known many people who look far more standard than I do, until you try to talk to them, at which point they have no spoken or typed communication. I have known many people who look far more non-standard than I do, and hold down jobs, have families, take care of themselves reasonably well, speak fluently all or nearly all the time, etc. There’s a myth that you can tell a lot about an autistic person by looking at them. I’ve been trying to break down that myth by juxtaposing my appearance with my writing, but a lot of the time people still think I’m amazing or unique in this regard. I’m not. Or else they think my appearance itself is a deliberate statement about my other abilities. It’s not.
I look like this as far as I can tell because this is how I respond to my environment at this point in time, and because I have no cognitive energy to spare shutting those responses off (there are people who look exactly like me in private but can hide some or all of it in public, at tremendous cognitive and emotional costs that take a long-term toll on their energy levels — all that happened to me was I burned out far earlier than the people I know who are facing the exact same burnout in their thirties and forties). Not that I necessarily would if I could, but it’s a moot point because even when I pour all my energy into looking normal (as I was at one point explicitly trained in doing) I still don’t.
Similarly, the reason I type rather than speak to communicate is practical: If I type, I type more or less what I want to say. If I speak, if anything comes out at all, it’s random things that are anyone’s guess as to whether I mean them, and it makes me overloaded, and tired, and in pain, really fast. It likewise is not a statement on my other abilities or lack thereof. (I know people who can speak perfectly well — at least superficially — who have roughly the same abilities as me in other areas or find a lot of things more difficult than I do, people who cannot speak or type who are way better than me at some things… etc etc etc.)
One autistic person (babalon_it) writes in response to this video:
Wow. That was awesome. I kept feeling myself getting drawn into rocking and singing along with and feeling things and wanting to be there again. I was there when I was a kid. Before they took my soul and told me I couldn’t be that. Before I was taught it was defective to be that. To be me.
Yeah. Exactly. I was taught that all this — the way I perceive things, the way I react to things, the way my body moves in response to things — was inappropriate and somewhat disgusting. And I do note some combination of revulsion and pathologization in some (so far all non-autistic) people’s responses. (And the revulsion and pathologization go hand in hand.)
Someone said that instead of seeing any communication going on, all they saw was a dysfunctional sensory system. They were too repulsed, apparently, to watch more than a minute of the video before coming to that conclusion. Another person described my actions as obsessive-compulsive rather than meaningful. Despite my clear explanations of my own interpretations of my actions. (Which are not entirely deliberate, but which do seem to be a constant back-and-forth response to things around me. Get me around even more unfamiliar stuff and I’ll either do it more or stop moving altogether — or both in rapid succession.)
That’s the opposite of what I talked about before. Some people are willing to add in all kinds of meaning that isn’t there — that by appearing on a video looking the way I look, I am saying something about my other skills, which should all be in line with their stereotypes, and furthermore which should always have been in line with their stereotypes, etc. Some people are willing to take away all the meaning that is there, by claiming that what I am doing serves no purpose, is not communication, etc, and that it is purely a pathological process and they as outsiders know this better than I do. Some people do both at once. I guess I prefer when people do none of the above.
I do want people to rethink what they see when they look at people who look like me, or unusual in some other way, though. Not in order to make them suddenly think everyone who looks like me is like me — that’s not true. But in order to make them think there’s more to people than the emptiness I’ve seen attributed to many.
That said, behind the message I’m, as a person, just as self-conscious as I ever was. I’d think I’d have gotten over that by now. By the way, it’s a myth that autistic people can’t ever experience this. Some do, some don’t, from what I’ve seen. The reason isn’t of course because there’s anything inherently shameful or defective about being disabled/autistic/etc, but because we’re taught by most people around us that there is. Laura Minges wrote a wonderful monologue called Disability Shame Speaks (click through it, there’s several pages), that probably explains a whole lot of my current reactions to all this.
Additionally: There’s a person who wants to know if I am really typing this stuff. Anyone who wants to know that (and who isn’t one of the very few people I’ve already expressed a wish never to be in direct or indirect contact with) is welcome to look at the page I have on official documentation. Look at the last document. It tells you where I receive services. You are welcome to set up a way to meet me at that place, with either my staff or my case manager, at some point. At which I will make it as obvious that I am the one writing what I write as I have to. (An easier task for me than for people who use FC all the time. I only rarely need it, and therefore can make it obvious through what is usually fast ten-fingered typing that I am writing what I write. I know plenty of people who use FC, though, who are just as much for real as I am, and don’t want you to go away thinking they aren’t real but I am or something, although I have little control over that I know.) Same goes for people who want to know if I really exist or not. That’s a standing offer. If you want to email me, look at the web address for this site, and insert an @ instead of a . before autistics.org.