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April 23, 2011 / Julia

This Is Our Reality

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.

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8 Comments

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  1. Ettina / Apr 25 2011 5:52 pm

    My parents wouldn’t have aborted me. They’ve said so. They are pro-life, so they wouldn’t have aborted anyone (in fact, my Mom had a kid put up for adoption before she started going out with Dad). But knowing what they know about me, as a person, they have said that they’re glad they had me. They’ve said that if they could’ve cured my autism, they wouldn’t have. (In fact, my teachers were convinced that Ritalin would cure me, and my parents refused to give it to me.)

    More and more, I realize just how lucky I am. My dream is that everyone grow up with parents like mine.

  2. just someone passing by / Jul 16 2011 9:11 pm

    I’m not autistic, but the fact that I’m schizoaffective made me very interested in disability rights, and I came across this blog and just wow. One, that was gorgeously written (I know, I have weird priorities, I like writing) and just so strong, and wow I want to print this out and tack it up on my wall. Two, a lot of this rings true for a lot of disabilities, I think. I had the same conversation with my parents and recieved the same answer, and there’s something very weird about the knowledge that, were science a little better years ago, you wouldn’t exist.

    I think this is something all neurotypical/normal/priviliged/whatever you want to call them people should read, because this captures brilliantly exactly what it is to be an outsider in this world.

  3. Kassiane / Aug 18 2011 2:45 am

    This is perfect. Everyone should read it. EVERYONE.

  4. clydethecat / Aug 23 2011 7:53 am

    This is why I am against the idea of a prenatal test for autism. It could mean many people who have autism would not be given the chance to live because they are seen as “not good enough to exist” or a burden to others.

  5. Dixie / Nov 19 2011 2:22 am

    I think you’re right that maybe none of us is good enough to exist. And yet we do. You’re such a good writer.

    Dixie

  6. Stogu / Jan 19 2012 2:45 am

    This…BEAUTIFUL. Please, know that at least one person loves and accepts you.

  7. Artemis Scribe / Jan 30 2012 1:34 am

    I know this probably won’t mean much to you, because I’m just a stranger and you can’t know if I will follow it up or if I’m sincere about it, but I promise that I am.
    I swear upon everything I hold dear, that if pre-natal testing is brought in I will not have my baby tested, and if by the time I have kids you have to be tested, no matter what the out-come I will NOT abort that baby.
    Every child is precious.
    Every child is different.
    Every person deserved to be loved because of their differences not in spite of them.
    I’m shocked that some people feel this way about their own children, and it apears to me that you are a nice and succesful person.
    You deserve better.

  8. arianezurcher / Mar 2 2012 7:59 pm

    I am pro-choice. I am the mother of an amazingly beautiful being who happens to be moderately autistic. She is unique, just as all of us are, she has a terrific sense of humor and a gorgeous voice. As I said, she is beautiful. Not only would I not have aborted her had I known she would fall on the spectrum, but I would not trade her for any neuro-typical child in the world. She is Emma. And my life is so much better because she is in it. Every day I feel gratitude for her existence.

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