I took these pictures because I didn't know what I looked like when I was stimming and I assumed it probably looked scary. As soon as I started taking them, I realized it looked sort of cool, at least in pictures, so I took a lot more.
Before, I didn't have an image of what a person who stimmed could look like. I'm not saying I was raised to feel terrible about stimming because I wasn't really cracked down on by teachers and parents like some people are. But it was sort of similar to how I felt about being queer--I either heard vague negative stuff, or silence.* I saw people on the Internet saying it was okay but I had trouble applying that to my real life.
The next summer, I wrote this piece: Functional Stimming. It was mostly a reaction to anti-stimming attitudes at the school, but I tried to approach the issue of stimming in an objective and accessible way. I took pictures of myself stimming and described how I felt about stimming, and I talked about two people I knew who stimmed, and included pictures of them.
Towards the end, I said:
I don't feel great about the way I stim. I wish I could stim the way Clayton does; it seems so natural and unselfconscious, just an intense expression of his feelings. I feel like I have a stimming habit, like I binge on stimming. It feels like an explosion and I feel worn out afterwards.
I remember other kids making fun of me for shaking my knees back and forth in class and compulsively touching my nose while I was reading. I don't know if that's how my stimming got driven underground. I just very much wish that instead of being this giant, dramatic, embarrassing thing, stimming could just be part of my life...
I just went and walked in circles for a few minutes trying to get my thoughts together. That was really nice. That's the kind of stimming I would like to do--calm. Something that makes my thoughts make more sense instead of ratcheting them up to fever pitch.
That summer I also made some videos like this:
One night I got stuck in the city with a headache and some general spaced-out-ness and was really screwed in terms of finding a quick subway train back to Grand Central. Last summer was the first time I really started understanding subways at all, and I'm still not very good. So I ended up riding around a lot and it was really late at night and I remember being really proud because I knew I would eventually get home even though it was hard, but I also was feeling unpleasant in other ways because it was loud and hot and I had a headache. I was thinking about Danny because I was seeing him every day and he loved subways. Thinking about Danny always made me think about passing and stimming, so I started stimming while I was waiting for the subway and it made me feel better.
And I had a horrible year in general and I became much more conscious of times when I needed to flap my hand by my side or scrape my palms along the edges of tables or step my feet around in circles. It was weird because things were so awful and in many ways I felt scared because I was letting go of many standards for being normal that I'd previously held and I think I worried that if I wasn't holding myself in place, I would somehow wake up one morning and be nonverbal or something like that.
At the same time, when I went back and read Functional Stimming, it seemed that all the problems I'd had were a lot better. Stimming had become something wholly neutral or positive. It wasn't always this full-body thing that exploded out of me unconsciously when I was alone, and hyped me up more than I wanted. It was just a tool and a joy.
I'd also started to feel differently about the way I hold myself. I think it's called posturing because when I say I move stiffly I don't mean I am stiff, or something, but that I find it nice to stick out my arms and legs and hands.
This is an overdramatic version of what I mean, because I'm doing it on purpose, but you get the idea. It especially affects the way I walk when I'm really at all excited or at all nervous. I just move my legs very stiffly, which probably is hard on my feet or something, but it feels really nice. If I try not to look different, it gets even worse because I'm nervous, and it ends up just being in the legs which are moving really mechanically. (One time Amanda Baggs wrote a post which in part was a description of how she notices ASD people based on how they walk. Some of this explains well what I'm trying to talk about.)
I guess this spring it occurred to me that I'm not the only person in the world to ever hold my hands differently and I started thinking about what I was afraid of looking like. There was obviously something I was freaking out about and trying to avoid but when I thought about it I realized it just looked like the way some people with ID and ASD walk and hold themselves all the time, and it also looked like some people with cerebral palsy. Once I started thinking of it that way, it didn't seem like a bad way to hold myself, because I associated it with other people and not just me being different by myself.
Now instead of trying to walk normally and then occasionally walking really stiffly, and also having these huge full-body stim explosions when I'm by myself, I just walk in a way that is more uneven and "posture"-y and I tend to kind of burst into a run more and sort of have stiff legs and move them around in a jumpy way. Not that I don't jump around on my own sometimes when I'm excited, but it doesn't feel like a huge problem that takes up a lot of energy, it just happens from time to time. And I don't feel bad about holding my hands in a stiff/curled-up way that feels good.
Of course I have criticisms of the camp where I worked this summer because you should always be aware of flaws, but it was in many ways very cool and very different from The School, because we weren't encouraged to think of ourselves as socially separate from and superior to the campers. Staff got involved in campers' interests and senses of humor; we weren't trying to get them to copy us. To the extent that we were trying to do stuff, we were trying to make sure they liked us and had a good time with us.
This was apparent before the campers even got there, just from the tone of our training. I was already feeling pretty happy and safe a few days into orientation, when we were going back to our cabins for a break. I felt excited and as often happens I ended up running for no discernible reason. Another counselor saw me and said, "Run Forrest run!"
I have had people make shitty comments about the way I run, and although this person was being friendly I can still imagine that I might have felt embarrassed and angry to have been "caught" doing something like that. But I guess since Forrest Gump is in fact disabled, even though she probably wasn't trying to make a comment about me looking disabled, I just processed it calmly in my head: "Forrest Gump is disabled and I'm disabled and I reminded someone of Forrest Gump. That makes sense." In the moment it made me feel good.
I also just remember dancing a lot (I had never danced before) and being excited and squealing and posturing and tripping over things because I was running around so much, the whole time I was at camp. It wasn't anything to be ashamed of because I was doing my job properly, and there were lots of awesome people around who also squealed and ran around a lot and flapped and made motorboat noises. There was a moment when I remember being really excited and happy in a really disabled-looking way in front of the whole camp, and I felt sort of transcendent and like I was going to cry. It was a weird sensory experience too, and just in a lot of ways one of the best moments of my life.
One time in seventh grade, I remember walking around with my shoes untied and not caring what other kids said until one girl said, "You look like a boy with your shoes untied." Then I immediately tied my shoes. Since then I've gone through periods of really really wanting to look like a boy, and even though I don't feel that way anymore I generally would find it cool to be told that something about my appearance looks like a boy. I tie my shoes now, because I would probably trip over myself when I start RFRing, but I'd like to think I own the possibility of looking like a boy. And I want to also own the possibility of looking disabled.
This is a pretty nice thing actually. I don't enjoy passing. Just kidding, I love passing. Just kidding, I hate passing. I mean I don't know. I am likely to think people who are visibly disabled have it worse, but I sometimes really wish I was visibly disabled and sometimes I feel like the fact that I'm not is what has caused basically all my anxiety/dissociation problems.
I have a lot of what I think are probably normal issues for women my age--basically, thinking that I'm horrible-looking and combing Facebook for pictures of myself and even if it's just a picture of my arm totally flipping out about how my arm looks horrible. Or maybe I have it on a level that isn't normal. I just look at pictures and think I'm smiling differently from everyone else in the picture. My face is bigger or smaller than theirs. I'm holding my legs differently. My hands look stiff. No one in the picture looks like they're my friends. I look like I'm just lurking in the background.
I just engaged in a bunch of this yesterday so I'm certainly not claiming that I feel great about myself now but I think that my feeling shitty about myself has been reduced to a more standard level. I also feel like I have something to move towards the way other people do when I think about how I'd like to look or how I'd like to be. Because I have images of people who look like me.
This is the reason I have trouble identifying as just Autistic instead of developmentally disabled, just because lots of the people who have led to me feeling okay, and feeling like a kind of person instead of just something unclassifiable, have been people with ID and other disabilities. I've talked about this a lot. But I just realized the other day that things are feeling so much better so I wanted to tell you some more.
*I'm sure my parents would take issue with this, especially in terms of queer stuff. I know that most people have it much worse but the thing is that most of the messages I got about queerness and DD were either mildly negative, acted like it didn't exist, or were very long-sufferingly tolerant (like my high school). Which isn't terrible but does make it hard for you to actually form into an adult because you feel uncomfortable/depressed about a lot of the things that you are.