Self-consciousness, and meaningfulness, and meaninglessness.

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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.

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20 responses »

  1. It’s ironic. I was just thinking about the same issue.
    I was realizing that I suppress excitement around other people so I don’t act strange, and that when I’m talking to myself (because it helps me think if I narrate out loud – whispering isn’t as good) I automatically lower my voice or stop around other people.

  2. I forget to ask – can I do the ‘in the name of memory’ song for a video on youtube? I’m not promising to do it, because many things I think of doing but never do. However, I feel drawn to that song and want to sing it and listen to it and memorize it.

  3. when i first read your other site, before knowing your blog and you personally, i have to admit i thought “those [dehumanizing, medicalized] things they are saying are not very nice… but are they true?” and i saw a “low-functioning” autistic person. after getting my confident little aspie mind blown by reading GTTO (and later by chatting with other autistics who seem a lot different from me, and finding out about all kinds of interesting differences and commonalities in our lives), i came to know more than i ever dreamed about the variety of autism, even the variety possible within each person. This includes of course also getting to know you first through reading your blog, and later getting to know you personally, mostly in SL.

    but the other thing that happened was that i didn’t see you anymore as even some “obviously autistic woman”, but just “Amanda”. when you get used to a person, then you stop seeing them in terms of different labels or other adjectives, and they are just them. at least this is how it is for me, and i think it’s why i have a hard time explaining or describing people i know well. when i first blogged about some stuff you wrote over here, i said you were “amazing”, not for looking like you look and writing what you write, but for explaining certain things and doing so in a way that was capable of waking me up and making me think. sometimes my mind gets lazy and it takes a lot to wake me up; i suspect i may not be the only person like this. you are probably still amazing, as you keep writing and filming more and more stuff that wakes up people’s minds. but to me, now, you are you, not some list of labels or even attributes.

    so i guess what i mean to say is, that the more and more people get to know you and get familiar with you (and -because, like you said, this is not about you, but about the whole idea of how people ought to consider each other- hopefully get familiar with many other people whose lives they might not have really thought to try to understand before), i think that will be a good thing. and i think that your self-consciousness is very human and understandable… but i think that your efforts in spite of it are worth it. and while you are not the only one, there are not enough people doing what you are doing. i wish i had -i wish more of us had- as many useful ideas as you, and as much guts to put ourselves out there and say them.

  4. 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.

    I don’t think it’s a silly reaction — if I knew that many people had seen me I’d find it very overwhelming. It’s a completely understandable reaction. And even though you don’t know me all that well, (hence, I hope this doesn’t come across as too weird) I was kind of worried about you last night because I can empathize with the feeling of being completely not-an-attention-seeker by nature but having something to say that makes anonymity impractical.

    In addition, it seems that you’ve been put in the position of explaining things and answering questions about your personal life and such that (a) really have nothing to do with what you were conveying in the video, and (b) aren’t really anyone’s business in the first place. You don’t owe people information just by virtue of existing as you exist, but when it’s either give them the information or have them go away with certain incorrect assumptions firmly in place, I imagine it’s probably like being backed into a corner. And that must be a tremendously difficult position to be in.

    I really have to wonder about the concept of “social skills” sometimes; it seems like people are willing to ask you stuff that they wouldn’t ask someone who was more like them…maybe I’m incorrect in that assessment, but I’ve been utterly shocked at the degree to which people are delving into your life.

    Good luck getting through the barrage.

  5. Wow. Thank you so much for posting this video. As I try to help my daughter, I’m struck time and time again by how many things she does that I do too – but I got thru without a label. I can see the blades on the ceiling fan as it spins; I can watch water for hours. Right now, I’m updating my webpages with more tools for people with “executive disfunction” and sensory overload – as I do updates, may I link to your blog and video? Every child in my house came over to watch you rock and listen to you speak. Even the cat’s tail moved in time to your rock. I’ll be reading back on your blog and catching up. (PS – if you wash the cat and dog more often and catch more of the dust before it gets in your nose – you’ll have less allergy symptoms. Some parents use Epsom Salt baths nightly or Pepcid Gold for allergy related things.)

    Thank you again, Shannon Anderson (big, deep-pressure hugs and hums)

  6. I always make the mistake of trying to keep all the ways that I can be perceived as different from nonautistic people hidden when I’m talking to someone I don’t know well. Which leads to me feeling headachey, anxious, tearful and irritated for ages afterwards.

  7. I don’t want to rattle statistics or make you feel more shakey, but I suspect it is really many more people who have seen the video – different sites host it and forward it to their pals and so on. I just hope that the majority of people watch both ends and the middle – not too many of the ‘I could only watch a minute then…..’ I hope that the majority of people who watch all of it are deeply touched, their understanding is expanded and we are all able to live a more elastic life together.
    Cheers

  8. Thanks for connecting Cheryls ” I hid my hands because they made people self concious” and the idea that “if you really cared about what people thought you would change the way you looked”. I think too many times thats how others can manipulate us into doing things we wouldn’t really do simply because they have to be “protected” from reality. Reading what Cheryl wrote I realized “that’s why I wear glasses most of the time !” Because I sense without them people feel uncomfortable with how my eyes look. Thanks for waking us up to how much we let our lives revolve around “making people comfortable”. If thats the way God made you and me then THEY are the ones with the issue. Its another way that NICE people have of controlling others to do what they want to do.

    As for the 24,000 hits. Think of it this way – that means possibly 12,000 people will show a bit more respect and understanding to any person with “undesireable characteristics” and just maybe will enlighten another 12,000 people who don’t. that also means that another 6,000 people who are autistic or nonverbal will then have a better chance at being respected and have a life. Which in turn just might affect policies and laws that are currently in place that prevent that from happening.

  9. I found a link to your video on BoingBoing, a ‘directory of wonderful things’ that attracts brainy misfit folks like me. I recall that they also posted a link to your activist site a few years ago, too. BoingBoing is a very popular site, which might explain the spike in viewings.

    My eyes and mind have been opened by your work, and the work of others like you. I was born ‘different’ too- and had to put up with not quite fitting in. I still don’t, but my oddities now are seen as eccentricities that are ‘part of the package’ as it were.

    I sincerely hope that your work opens up more eyes and minds- and hearts. And like a poster above said, perhaps it will engender more respect and understanding and in turn influence laws and policies. I’ll do my part to get the message across- it is the least I can do.

  10. Please teach me to speak your language. To better understand. My son is autistic and for 20 years I have tried to get into his head. I want to see what he sees and why he does what he does. I want to experience the joy of understanding what he feels, wants, and thinks. I want to break down the barrier and learn to communicate. Whatever it takes. I am open to looking at things in a different way and trying something new. I just want to connect. I know there is a wonderful person here and I just need to learn the right language. Can you help me or tell me where to look?

  11. hi
    I really enjoy your blog..
    It’s fascinating to think about the nature of communication..especially when words seem so clumsy. There is an idea that all that is, is metaphor..and symbols fail to grasp the pre-linguistic nuomena that form the basis of all experience. I think of you as being “gifted” rather than disabled..and wonder why you even describe yourself that way..

  12. Because I’ve long been part of a disability rights movement that acknowledges that disability is mostly to do with which people a society is built for and which it isn’t. I see no negative connotations to the idea, and find the idea of putting “gifted” (a “good” thing) in opposition to “disabled” (a “bad” thing) somewhat offensive.

  13. Your video views (just on YouTube) have just about doubled since this post! Congrats! As different from others you may feel, self-conciousness is pervasive throughout society. Everybody feels it, and a lot of people think they’re the only ones feeling it, or that they feel it the most/are most justified in feeling it. For better or for worse, appearance is, ostensibly, the first thing most people notice about anybody, and it is thus the basis for initial judgements. Fortunately, we’re intelligent enough to suspend and modify judgements and recognize their fallability. With the video especially, I don’t think a lot of folks are thinking too much about how you look, in the way that is making you feel so self-conscious. I guess I don’t know what else to say on that topic b/c it’s not like you can command someone to feel less self-conscious, but now you’re in a position many envy. I’m sure you’ve seen your YT honors…FOUR of them right now! Serious, right on, girl! Instead of comparing notes with other autists regarding being overwhelmed, now you’re going to have to get some tips from celebrities. In the meantime, I hope you don’t mind while myself and others get our excitement vicariously. I know I get a kick out of seeing your views go up and up and up…

  14. Oh yeah. I’m aware self-consciousness is definitely a universal thing, or near-universal.

    The trouble is that I have an innate aversion to the position I’m in, although I’m aware that many people would like to be in a similar position, and would thus (if going on the sort of projection most people seem to go on) not necessarily believe this is aversive to me.

    I haven’t seen the YT honors actually, I only go over there to approve comments.

    I have already gotten some tips from an autistic celebrity (which I hope I never am) on how to handle some of the weirder fallout of getting noticed.

    And I keep trying to ignore the numbers.

  15. correct you are…it is strange that we create binary oppositions that categorize individuals.
    Maybe this is something that illuminates the inherent trap doors and misleading corridors that are embedded within communication. But as you say, we are individuals existing in society that has created these categories using these linguistic pre-cepts. My purpose in using the word “gifted” was to point to your “difference” as a quality that is unusual, but not necessarily negative. Do you find the word “special”..as in “special needs”..or other such words equally problematic?

  16. People have sometimes thought our self-consciousness was for a different reason than it actually was. It’s true that there are a lot of people who are much more “unusual-looking” than we are, although there are people in here who still don’t like the way our face is shaped, or our posture (we’ve had very noticeable forward neck posture ever since a pretty young age, and scoliosis that no one caught, although I think it’s less pronounced now than it once was), or other things that have apparently jumped out for some people as making us look like a “retard” or “cripple.”

    When we were about 10 or 11, we used to wear a pair of dark sunglasses and walk around with our eyes closed, trying to navigate around by touch and sound. It wasn’t just that we wanted to have the ability to do so, although we did (re your older post about “dark-impaired” people). But, I think it was also then that we discovered we were much less self-conscious when we didn’t have to look at people’s faces or eyes while talking to them, and that we actually had far more people-reading skills available to us when we had the option to not look at people or look at them indirectly.

    Most people would put this together with the fact that there were some things about our appearance that we were self-conscious about, and had been made targets of derision by other children, and say “You were trying to do it for the comfort of others, because you knew something about you made them uncomfortable.” Actually, no. That wasn’t it. We knew there were things about us that made others uncomfortable, but the self-consciousness of that was totally different from the self-consciousness we were trying to avoid with those dark glasses, which was caused by other people trying to force eye/facial contact with us even as just a “polite” and “routine” thing. If we’d been trying to hide ourselves for others’ comfort (and we’ve done that too, in the past) we would have turned our face away rather than closed our eyes. It was their “polite eye contact” we were trying to shut out.

    So there were two different kinds of self-consciousness going on there with us, one being pretty much universal to anyone who’s disabled or unusual-looking in any way, the other one apparently the exact opposite of what a majority of “unusual-looking” people want. And people have interpreted the second one to be a by-product of the first type of self-consciousness– “you don’t want people to make eye contact with you because you’re uncomfortable with your appearance.” No, we don’t want people to make eye contact with us because we don’t want people to make eye contact with us. We never made eye contact even when we had no self-consciousness about our appearance at all, before people started to say that the way we looked or moved was strange in some ways. But because we had been made to feel ashamed of how we looked, people started thinking they could therapize that away, or whatever, and that if we didn’t want to make eye contact it was somehow because we had an investment in holding on to our shame or clinging to a victim role.

  17. Shield your eyes, here are your current YT honors:

    #21 – Top Rated (This Month) – People – All
    #20 – Top Rated (This Month) – People – English
    #8 – Top Favorites (This Month) – People – All
    #7 – Top Favorites (This Month) – People – English

    The good thing about being a YT celebrity is that it’s totally different from being a “real” celebrity (I can only assume). Your mention of an autistic celebrity reminded me of one of my favorite books, Thinking In Pictures, by Temple Grandin. It’s been too long since I thought of her, so thanks.

  18. I had an idea of acting it out with twist tie people. I have long played with twist tie people, my first twist tie creature (a snake) was made in kindergarten (or maybe grade 1). Since I’m underage, the only part of me that will be visible is my hands.
    I’ll make the video soon. Should I send the video to you, or you send the MP3?

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