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Archive for the ‘prejudice’ Category

This Is Our Reality

with 13 comments

Last year my parents and I were talking about prenatal testing. It comes up—I work in a special ed room, I had just learned about the abortion rates for Down Syndrome, we live on a street with four autistic kids, and I was discovering the Disability Internet. So I asked if they would have aborted me had they known how I would turn out.

My parents told me last year that, had they known I would have been born autistic, they would have gotten an abortion.

My parents would have aborted me.

I kind of want to just stop typing there.

This is real. It happens. It happens all the time.

(I know five other sets of parents with adult autistic children who have said the same thing. I have yet to find a pair in real life that wouldn’t. This is real. It happens.)

It’s all fun and games when I snark about ableism and eugenics and people respond with condescension and strawmen and the same non-arguments I’ve heard hundreds of times before. It wants me want to write additional fun facts about how the usual silencing tactics in this conversation are ineffective against me—you can attribute to me things I never said, but I won’t defend them because I am autistic and your errors, while interesting, are mostly just amusing and kind of annoying. I’m used to people not listening. It was the first fact I ever wrote about.

You know what’s not fun and games?

My parents would have aborted me.

Even knowing me, (then) eighteen years later. They would have aborted me.

It’s not that we don’t love you. We just didn’t know if you would have wound up like that kid up the road.

I don’t write as some Super Shiny Aspie (TM). I write as someone who spends her days with that kid up the road. I write as someone who has spent the past year of her life as someone who was told that her existence is a lamentable mistake caused by a technological lag. I write as someone who belongs to a group that isn’t good enough to be allowed to exist.

I’m not putting this under a cut. I want you to have to scroll through this. I want to scream about the gaping, oozing wound carried by every autistic—the you shouldn’t be here written in the margins of our files—and I want someone to listen.

The reality of an autistic person is this: your parents didn’t want you. They wanted a child they felt they deserved. They go to support groups and have a mourning period after a diagnosis which takes place in a cold white room with whispered voices. They are probably told to put you in an institution—as you play at their feet—or else you are subjected to hours of behavioral modification which does nothing for your ability to function as an autistic person and maybe a little something for your ability to embarrass your parents a little less.

People give up on you.

You go to school and the other kids call you retard, never bothering to learn your real name. You don’t sit with anyone at lunch. You play by yourself and you like that better than the abuse. The point comes where you realize that you can’t lift your arms anymore. They’ve been slapped so often for flapping that you have a terror of moving them.

You learn that different means harder means defective means not worth it.

Perhaps, like everyone else, you are born knowing that. One day you realize it’s meant for you. This is probably the same day you receive some official confirmation that people would really rather you weren’t there.

Everyone is generally very nice about it. What are you supposed to do about the nice people who don’t want you there?

You start, maybe, to learn some words to describe what it is to be you. You aren’t sure that they’re entirely the right words—you’re learning them from other autistics, and they get yelled at a lot of speaking up and trying to help you—and everyone else insists that they are very much the wrong words. You keep trying, though, because it’s the first time anyone’s ever let you think that maybe no one is ever good enough to exist and yet we keep on existing, and that means something to you.

Eventually you start saying these things on your own. (Maybe. If you’re lucky. If you’re listened to by anyone, which is a crapshoot anyways.) After a while you stop being confused by the things people yell back at you, because you realize they have nothing to do with what you are saying, and everything to do with you saying something.

The reality of an autistic person is this: you shouldn’t exist, and your defiance means you must be punished.

So no. I’m not anti-science. I don’t think being disabled is super fun. I don’t think anyone deserves to suffer, ever. (And, because I mention abortion, I’m also pro-choice!) I’m mostly someone who is tired of being run off the rails whenever she suggests that maybe she’s a person, too or that’s not very nice with very rational, condescending platitudes about intent and think of the family members and your life is wrong, that never happened and this must be so difficult for you, let me explain and above all: you’ve got it backwards, the world is actually flat.

I am someone who should have been, would have been aborted.

I am finally, finally speaking up for myself. You don’t have to listen. But you don’t get to tell me to shut up because my voice doesn’t belong. You are certainly allowed to take what I say however you want, especially as a personal affront directly targeted at you (I once used a similar configuration of words to something she is snarking about! I am the only person who has ever said this to her ever. She is attacking me, or at the very least responding directly to my mutterings. This is probably as close to a conversation as she can manage!) I understand that it must be very hard for you, hearing all of these inconvenient people speaking up and speaking out and making you uncomfortable. I will, however, ignore you attempts to make me shut up, stop, go die and speak a little louder instead.

I should have been aborted, and that is real, that is common, and I will share that story over and over again until I (finally) die because nonautistic people seem to think this conversation reduces down to something other than please go away you are scary.

My reality is that I’m not supposed to exist.

But I do.

Written by Julia

April 10, 2011 at 1:18 am

Speech (without a title)

with 5 comments

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.

 

 

 

 

 

Written by Julia

April 5, 2011 at 6:11 pm

Diary Of A Drooler

with 2 comments

This is a story about disability. This is a story about the politics of drool. This is a lot of things, and maybe you should just read it.

 

1.

So I want you to imagine being born a drooler.

We’re not talking just the adorable amounts of saliva an infant will naturally produce as their teeth come in. You grow up with that, sure, but then it never goes away. Some quirk of muscular development and oral-motor control leaves you with a constant stain of spittle around your lips and on your chin.

You grow up.

You have a small toddler friend or two, before anyone knows better. But you grow apart, and then one day in kindergarten you turn away from your playdough to answer someone’s “hello” and a string of drool lands on the tabletop.

Your cheerful “hi” is answered with a laugh, a stare, a jabbing, gesturing finger.

You remember your mother, always scraping at your chin with washclothes and whispering implored reminders to “swallow” and keep your mouth shut. You realize that no other kindergartener has sleeve cuffs which are crusty from reaching up to wipe their mouths every five minutes. The florescent lights above burn through your back, your playdough feels gritty in your fingers, and you’re sure that you’re about to melt under the table in a puddle of drool because you legs get this horrible shaking feeling as though they’re made of water. It spreads, and it’s like a wind or a shudder goes through your stomach and leaves your head empty and clear.

2.

You don’t realize it at the time, but you are one of the lucky ones, in a way. You do learn to go through life with your lips clamped shut around each other. You learn to swallow so that your mouth is always perfectly dry. Your fingers constantly flutter to your chin just to make sure. You spend hours each day just concentrating on the muscles of your jaw and mouth, more intimately acquainted with them than any other part of you. In some ways, you stop being conscious of yourself as anything except a mouth. The rest of your body seems far-away and empty, everything caught up in your war against your own saliva.

It doesn’t sound it, but you are so incredibly lucky. If you just fake it well enough people don’t think of you as a drooler, just another distant and distracted and distrustful kid. It will be years before you are first called retard, and for a very, very long time you are sure you can get away with it, be just like everyone else with one tiny little secret.

You never go to sleepovers or let yourself fall asleep on the bus, because you can’t control it when you sleep and you know that drooling is just a disgusting crime, grosser than eating your boogers and punishable in all sorts of intricately painful ways. But it really does seem as though, so long as you take some reasonable precautions and devote three seconds out of every minute to monitoring your mouth, you’ll be just fine.

And then you’re in middle school and everyone is laughing at some joke and it happens again, in a rare moment of laxness, and then everyone is laughing at you or else pretending not to see—and you never thought that could actually be worse, but it is—and you realize that no, fuck it all, you’re never going to get away with or from this.

You don’t want to be a drooler. No one wants to, and no one wants them. If there is one thing every middle schooler needs, it is to be wanted, even as just a friend, by someone. To belong, to fit in, to have a place where you are welcome. Droolers get none of that. But you’ll be fine. You’ll just try harder and take what abuse you get (because you deserve it, you can’t even control your own secretions) and everything is going to be fine.

3.

But your brain starts to shift a little.

You hear your voice on a recording for your answering machine for the first time and you spend the next five minutes wondering who punched you in the stomach. That voice. Is it really yours? It doesn’t sound anything at all like the one you hear in your head, and when you ask your mom mutters something about sound waves and bone conduction but all you can hear is that stupid, round, fishy, wet voice that you’ve apparently been using all your life. You had hoped you were a lot of things, fierce and funny and smart and competent and cool, but that, that is the voice of a drooler. People don’t even need to see your baby pictures, they don’t even need to see you compulsively swallowing to the point that your mom takes you to a doctor and asks about tics, because they can tell the instant you start talking.

You start to wonder if this is some great cosmic secret that everyone else got to know before you, and the thought makes you feel lost and sick and pathetic and you just know that you’d better be getting comfortable with that feeling because it’s going to get awfully familiar.

And you fight, you feel like a baby kitten but even they have claws so you scratch and fight and do everything you can to keep that feeling of utter uselessness from settling permanently in you. You sign up for all honors classes for next year and you try to dress like the most popular girls and you try out for soccer even though you are the best in the whole school at tripping over your own feet and you are so damn happy when Eric asks you to the eight-grade graduation dance that you let him kiss you afterward even though he tastes like pepperoni and smells like too much cologne.

And the kiss is horribly wet and sloppy and you are now known as the worst kisser in your whole year and you just want to die.

4.

 

High school is unremittingly terrible, even though you aren’t caught drooling once. But you make tiny mistakes in every algebra problem that create bigger mistakes and big, ugly red ‘F’s even though you are good at math and you love it. But your teachers talk so fast and you can never make rhyme or reason of what they say and so you spend your classes wondering how you can be so smart and yet so dumb and if you ever were smart at all and how are you going to past this test, and when that gets boring you draw passive-aggressive comics about your “friends” and their stupid boyfriends eating poisoned chocolates and getting stabbed with lightsabers. Everyone else bitches about long hours spent studying and you wonder if you should tell them that you are up until two every night just staring at your textbooks and worksheets and googling frantically and unable to make sense of any of it, somehow managing to string enough figures and terms together to create a passable bullshitting act that keeps you in the honors track with them. But you don’t tell, of course you don’t, because then people would find out and you can’t be found out again, you’re pretty sure they would kick you out of your classes and being able to scam your way into that elite little group of scholars is the only thing that makes you think that maybe you don’t deserve to die.

But one ever tries to kiss you again, or even invites you to a single party for four years, and every time you remember this all you can see in a spot of drool swallowing up the latest 68 handed back to you in geometry.

It doesn’t make much sense, but you come to see every little imperfection as a crack breaking across the surface of your act, ripping apart your pretensions of normality, of superiority, and it fills you with hate and fear and makes your nose ache with the smell of rubbing alcohol and your palms punch into your thighs until they bruise.

It just steadily keeps on mounting up, and every morning you wake up with a sticky chin and damp pillow and it gets harder and harder to climb out of bed. You know you’re failing on every level, but you’re terrified of what will happen if you stop. So you get up, day after day, and emerge every day from high school battered and empty, and that awful feeling of watery legs and a shivering stomach becomes your default setting.

You realize that you’ve never really left kindergarten.

 

5.

 

The admissions officer asks you, sounding bored, who you are, what makes you tick. And you just sort of stare blankly back, because you’ve been trying not to think about that since you were five and somehow, explaining that you’ve spent your whole life just pretending, and passing, getting by and trying to blend in and not let anyone see how empty you actually are, just filled with drool…that doesn’t seem like the sort of answer expected.

You realize that you can’t answer the question, you don’t know how to even begin to think about the answer, because sometimes you are so focused on swallowing and sealing your lips that you forget the rest of your body and just sort of bounce along the lockers as you navigate from class to class. You want to tell them that your earliest memory is of a washcloth against your face, that your first nickname was “Droolia”, and that this one special ed boy absolutely terrifies you because he has to wear a kerchief around his neck to catch his drool and what if someone connects you two? You want to ask if they’ve ever been sitting in English, doodling in the margins of a vocabulary worksheet, and then suddenly felt like they’ve been running for miles, so out of breath with their heart hammering in their heads, legs watery, shivering and shaking. You want to tell them that your least favorite thing to do ever is to go to the dentist, because your mouth is open and you can’t swallow for half an hour. You want to point out that you never smile for the camera, that you actively run away whenever a camera comes out because the area around your mouth is so slack and rubbery and you just cannot control it.

You smile and say something about liking to draw comics and observe people for new material.

6.

You fall asleep on a pile of your comics at RISD, and when you wake up they are wet and sticky and ruined.

They’re due tomorrow. Or today, actually, since it’s three in the morning. You can’t ask for an extension—what are you supposed to say, sorry I never learned to control my saliva, can I have an extra day to redraw them because I drooled all over them?

You drop out instead.

You drop out of everything.

7.


And the boy who pointed at you in kindergarten? Eric, who kissed and told? Your friends, who never bothered to ask why you wouldn’t come over to their sleepovers? Everyone who ever let you know, subtly and quietly, that you were fake and damaged and disgusting, who may have only said that out loud once or even never but who always gave you a million little reminders?

The ones who broke you apart because a few of your muscles developed a little more slowly?

They are just fine.

 

Written by Julia

April 5, 2011 at 5:57 pm