First Encounters

[This was written for my Introduction to Special Education class. The essay prompt was "What is your first memory of disability?" I don't think it's very good but it's the first time I've ever written all this out, from beginning to end.]

Last year, I had an experience which I think is relevant to this essay. I was filling out a form for a medical appointment, and was utterly bewildered by the question "What is the least you have ever weighed?" The correct answer could only be "6 lbs, 7 oz," but at the same time I doubted my birth weight was what the doctor wanted. I wrote it down anyway, because it was the only honest answer it was possible to give.

Similarly, I'm finding it difficult to identify my first experience with disability. Technically, my entire life is an experience with disability. The process I'm going through now, as I struggle to focus on the "spirit" of the essay prompt and discard its literal meaning, is an excellent example. I can’t pick my first memory of disability, but I can tell you about elementary school. I think that might be what you want.

The first time I knew that my brain was irregular was the day in first grade when I looked around the playground and realized that no one else was sitting alone. After this realization, I ran to join another group of children immediately – not prompted by innate desire, but by fear. What did they know that I didn’t?

Much of my life has been spent answering that question.

I remember walking down a dimly-lit hospital hallway when I was four, away from the specialist who analyzed my gait. I remember the MRI I got when I was ten, and the doctor who frightened me by telling me that MRIs were for people who had things wrong with their brains. I remember being sedated in order to go to the dentist.

My parents tell the story about how my baby sister’s screaming aggravated me so much, I asked them to put her outside. They tell me about how I hid under the table in kindergarten. They tell me about the doctor who told them that I was a genius, and the doctor who told them that I might never go to college, and the doctor who told them that I was perfectly ordinary and the problem was with them, their selfish need to consider their child disabled. My mom tells the story about how when I was seven years old she would ask me to spell words for her.

I had facilitated play-dates. I had shadow tutors, behavioral intervention. In occupational therapy, an energetic woman rolled exercise balls over my body and encouraged me to play on swings. At school, teachers took my books away and told me that recess was for socializing. I tried to play soccer but was terrified of the ball, of the other team, of my team. I was frightened of the lofts in my private school classroom, so my father took me “lofting” when school was over, slowly climbing the ladder until my fear subsided. For years I went to social skills training with a group of other misfit girls. We watched videos. We watched Jake demonstrate the right way to comfort a friend, the wrong way to comfort a friend. We learned how often other people lied.

I was bullied subtly – not with name-calling, but with observations. “You never look at things.” “You daydream too much.” “You’re weird.” “You should see a psychiatrist.” “You suck at sports.” “People call you a freak.” These simple statements terrified me. I was doing everything wrong. They could see. They knew.

When I was nine, my mom sat me down and gave me the name for the strangeness in my head. Three letters to explain everything – the second, parallel education I’d been receiving; my fear of loud noises, of soccer balls, of new foods; the painfully obvious asynchrony between me and my peers. It was like learning my own name. I cried, not because I was unhappy but because I was so profoundly relieved.

About Stimming

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.