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.

You are also my brain: adventures in (in)(ter)dependent living

I’m at home right now and thinking, as I always do when I’m at home, about my brain.

I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.

But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:

At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).

At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.

Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.

There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.

At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.

I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.

Now what do I do about it?