Neurodiversity

Speech (without a title)

Hi. My name is Julia Bascom and I’ve had it easy.

I had it easy. What this means is that in fifth grade I was the smartest kid in the class. I also did a lot of hiding under my desk, and I talked funny and moved stiffly, so the other kids formed a club. It had only one rule, the golden rule: you couldn’t talk to Julia.

I changed schools at the end of the year. I kept breathing, but then, I had to: I had it easy.

No one beat me up. They didn’t have to—I did a good enough job of that on my own.

I have a friend. We’ll call him Martin. Martin is autistic, like I am, although he doesn’t identify that way. In fact, nothing would make him happier than being just like everyone else. See, Martin and I are different. We both know that being different, being autistic, being disabled, is dangerous. We’ve both been bullied. We’ve both had it easy. We’ve both seen what our alternatives are—be just like everyone else, or don’t be anything at all.

The difference between Martin and I is that I know without a shadow of a doubt that this is wrong. Martin doesn’t.

Martin and I became friends because we were both worried about each other. Martin was worried because apparently no one had ever taught me how to pass for normal. I was worried about Martin and the way he was quietly twisting himself away. I only got more worried when he tried to teach me how to blend in, how to pass, when he yelled at me senior year for looking like that, because don’t you know you’ll get hurt, don’t you know you’ll die, looking like that?

I have another friend. We’ll call her Maria. Maria has also had it easy. She’s autistic like me, but she is more visibly disabled than I am. What this means is that when we went to get ice cream two weeks ago no one would sit near us. What this means is that people think that because I help her count out the money to pay for her order I should be ordering for her. What this means is that Maria is not permitted to just neutrally exist in public. Getting ice cream becomes an act of war.

I work with middle school students with significant disabilities in a mostly self-contained classroom. Some of them have had it easy—no one will talk to them, the other kids run away when they see us coming, the teachers don’t want them in their classes, but no one gets beat up. Some of them have permanent brain injuries from abuse. Like Charlie. Charlie goes into murderous rages and has almost killed people–he’s the sweetest kid, but someone decided to beat him enough that he doesn’t feel the world is safe for him. He’s right.

Kaley hasn’t been to school in two months. The social workers are sent away from the house and the state is content to leave it at that. I don’t even know if she’s still alive, and no one seems interested in finding out. Roger, who can’t feel or control his tongue, was kicked out of his foster home and into an institutional placement three days before Christmas because he eats too messily. His ex-foster mother now visits him regularly and expects him to call her “mom” and say that he loves her.

She says she loves him too.

The hell of it is, the world agrees with her.

Here’s the thing about being disabled: it sucks. It’s horrible in a million different ways, and not a single one of those ways is because I can’t do this or because I have this impairment. That would be too easy. Instead, every single reason translates roughly to because people are awful. Sometimes, for a minute, for a day, for a week, I think I can forget that. I delude myself into thinking that the reason I can buy ice cream without five different hostile stares, can be allowed to work in a school, can be invited to the occasional party, is because people really are okay, and not just because I have learned how to fake being normal, being human well enough to avoid some sort of weird ability-based xenophobia.

I’m wrong, of course.

I just spent seven hours at a conference about bullying. Here’s the genius behind really good, really effective bullying: it turns the victim into their own worst bully. I told you I never got beat up for being autistic. I want you to take a good look at me. See my glasses? Those are because I damaged my eyes banging my head in tenth grade. See the spots on my arms? Those are from where I tried to gouge out my skin all through high school. See the scars on my face? Those are a little more recent—same idea though: self destruct. There are a million more I can’t show you—even the insides of my cheeks are scarred. I can’t tell you how many pairs of sheets I’ve had to throw away because I woke up covered in blood—I’d tried to pick myself apart while I was sleeping.

I didn’t do this because I was depressed, or scared, or because I hated myself. I didn’t want to hurt. But I knew I had to. When I hurt, I was in my place. And smacking my head against a wall for an hour a day was ultimately less painful than trying to convince myself, let alone everyone else, that I was maybe, possibly, worth something just the way I was.

The thing about bullies is that, although they never go away—I went to a different school with different kids after fifth grade, but there were always plenty of bullies to keep me remembering—they cannot be with you every second of every hour of every day. They can do hundreds of subtle and nasty things to you, and they will, but eventually they will need to pee or go home or at least sleep. So what they do is program you so that you can continue to bully yourself in their absence. I still hear the chanted retards in my head whenever I play with a strand of beads. I still believe, in my stomach and pulse, the way you know to run from a lion or don’t jump in the campfire, that I shouldn’t be here.

I don’t need someone yelling at me to sit down, shut up, stop flapping—I do these things automatically now. No one needs to tell me that I’m worthless—I get that. Message received, message believed, message drilled into my bones. No one has to threaten and force me into some version of myself that is less visibly disabled, less obviously autistic, less real and I guess less threatening—I’ve carved off all those edges of myself into a smooth facsimile of what I need to be.

(That’s the only reason I’ve ever “had it easy”. Because I could do that. Because I have, or had, the rare ability to pull myself apart and twist myself into some new shape when ordered. I’m lucky, in other words, that I don’t have any glue holding me together. Lucky to be broken, because then there is nothing left for someone else to break.)

What I’ve just described is “having it easy”, and it’s actually not easy at all. It’s complete and utter psychological and emotional warfare, and there is no winning for us—they, the bullies, set the rules and the terms and they always win. Millions of us live like this every day—we have it easy, we can’t complain, this isn’t something that can be solved with curb cuts or an act of legislation, and so we die the death of a thousand cuts.

I told you about Martin, earlier. Martin always beat me on quizzes in class, but there is one thing I know that he doesn’t. I know that this is bullshit.

Here’s the secret. There is, in fact, one way to beat the bullies. See, what they want is to work themselves out of a job, to have you doing their dirty work for them. They want you to beat yourself up. So the way you win is by stepping out of the game entirely. The way you win is by knowing, being absolutely and irrevocably and 100% positive, that they are wrong.

It’s the tiniest thing.

It’s almost impossibly hard. How do you discover the world’s best-kept secret: that despite what you’ve been hearing since you were two and your parents started dragging you to doctor after doctor and the other kids stopped playing with you that you are actually perfectly fine, just fine?

When you are disabled, you are sick in every sense of the word. Disgusting, scary, dangerous, broken, wrong. Lesser. I knew this, had it memorized and lived my life accordingly. But one day I met someone else who was sick. “You’re sick!” I protested when they insisted on acting like a human being.

“Yeah, I am.” they agreed. “So are you.”

And then one morning I woke up. I was still sick. And I was also fine.

I was fine.

There is no equivalent to a GSA for disabled kids. We have to pass it on like a secret. You’re okay. We’re okay. Everyone else is wrong. We have a right to be here too. We’re not just sick. We’re not in doctors’ offices all the time. We’re okay.

We need that support, need some sort of physical community. Passing it on like a rumor isn’t enough. The moment we realize that the hateful people who fill and control our lives are wrong is the moment when everything can finally start to change. That moment shouldn’t even have to happen—it should be something that we just always know.

Things won’t get better until then.

Good-bye. My name is Julia Bascom, and I am, always have been, and always will be, fine.

Thank you.

Julia Bascom blogs at Just Stimming.

Speech (without a title) appears here by permission.

[image via Flickr/Creative Commons]

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Julia Bascom on 12/12/11 in featured, Politics | 1 Comment | Read More