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Archive for the ‘advocacy’ Category

Patronization

with one comment

I received the feedback forms from the presentation I gave in August. The responses were uniformly positive—I’m just not sure I can trust them. See, I was described by various respondents as “inspiring,” a “kid,” and “a very good role-model.” (But relatively “empowered” and “self-sufficient,” as opposed, one can assume, to the Real Autistic People.)

Can we talk?

First of all, let’s get this out of the way: I am not a kid. I am, indeed, rather young, and as embarrassed about that as I am, there is nothing wrong, really, with calling me a kid. I call myself a girl. But calling my co-presenter, who just earned her doctorate, a kid? Makes me suspicious. It makes me remember how in popular conception there are no autistic adults, only children, and the children never grow up (or even reach puberty.) It reminds of how I listened to a man giving a presentation about a “community” he was designing for “children with autism”—except every one of these “children” was over the age of 21. When asked, he explained that “I call them children because they will always be children to me.”

And when that is the dominant context for these discussions? Then no. You do not get to call me a kid.

Similarly, “inspiring.” I’m amused that the same qualities which make me a failure and a disappointment in one context make me inspiring in another. But it’s not funny at all. I write and present furiously about injustice, about violence, about the things they do to us. No one who actually hears what I say walks out of the room inspired. They walk out furious. This? Is not inspiring. It’s terrifying. I don’t write to move or to touch, I write to survive, and it’s only inspiring if you paint over all the pain fueling it and everything it’s about so that you can enjoy the utterly adorable sight of someone trying to advocate for themselves.

(At the conference, Zoe asked DJ how he dealt with hate-speech. He told her to be brave, because that’s all you can do in the moment. A woman sitting next to us was so touched that she teared-up and put a hand over her heart. Not appalled that we live in a world where people argue about whether or not it’s morally justifiable to kill us. No. Inspired by our adorable attempts at bravery.)

I’m not performing for you.

This is not about your reactions.

This is not supposed to be easy.

It’s not easy for us at all.

I’m not a good role model. I’m far too angry and unpredictable for that, and if I were to mentor anyone the first thing I would tell them would be  “figure out how you want to be.” There’s not a correct way to do this, there’s not one right way to be an adult autistic, there are no acceptable autistics, and it terrifies me and sickens me and makes me worry about what I did wrong to make someone think I could be any of those things.

Finally. I am utterly fascinated by the use of the descriptors empowered and self-sufficent. Those are great words, and I plan on adopting them. But saying I am those things, and other autistics aren’t or can’t be, tells me, if I had any doubts still, that you sat down for an hour and fifteen minutes and didn’t hear a word I had to say.

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Written by Julia

September 4, 2011 at 3:11 pm

On Being Articulate

with 13 comments

They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)

I can request independently and answer yes-no questions reliably.

(I can request independently because I never make requests, which means independence, which means I must not have to but I could if I did, right? But if you ask me if I need help I will say no, and if you ask, as my hands fly around my ears and my shoulders go tight and small, if I’m okay, I will say yes because I can’t say no and if I could it would mean more talking and less space and I will say anything at all to get you to go away until my brain is my own again.)

I am verbose and prosaic in my speech.

(I am as helpless to stay silent when you speak to me as I am to move when I need to do laundry. I freeze, staring at my dirty clothes, and every cognitive break I own clamps down because I can’t, because there are too many steps, because this has been the Summer Of Laundry Wars and I have lost. But there are no steps at all in unhinging my jaw and going somewhere very far away and echoing, echoing, reciting and remixing scripts about Why I’m Not In School and What I Did This Summer and Why We Deserve Human Rights until the tape runs out.)

I have such a good grip on the English language.

(And such a poor grip on reality, going somewhere still and quiet and out of my head while my mouth turns tricks for you.)

I’m never told I’m impolite or out of place or off script.

(Bad, too serious, perseverative, disconnected, hateful, boring, too enthusiastic, dogmatic, of course. All of those. And that’s just for talking about a show I like, without even stepping on anyone’s toes. For being happy, for getting excited about something, for trying to share. For saying something that wasn’t an answer to a question. But everything’s fine, and I’m very polite, I’m very well trained.)

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

(I never disagree with you to your face, and you’ll probably never hear about it because the gore in my stomach when you tell me I must be very high-functioning gets pulled down by the fear of quiet hands and you must not understand and I know putting yourself in other people’s shoes is hard for you.)

I’m a Forgettable Autistic.

(As a child, I didn’t cry when I broke my wrist, which meant I didn’t feel pain. I read about social skills when I was bullied, so I wasn’t mistreated. I didn’t cry when I was abused, so it wasn’t abuse. Now, I tell you it’s fine and I walk away, and maybe I sat in a hallway for two hours the other week, unable to remember how to stand, but I can tell you I’m fine so I must be.)

I’m articulate.

(So you don’t have to listen.)

Written by Julia

August 31, 2011 at 6:40 pm

Dear “Autism Parents”,

with 93 comments

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

6.

“But my child!” you say. “My child can’t feed themselves! My child needs diapers! My child cannot be left unsupervised! My child is medically affected!”

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Stephen Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

On days like today?

It’s just a lifeline.

Written by Julia

August 23, 2011 at 1:57 pm

Please, Please Believe Me

with 6 comments

My attempt to start a letter-writing campaign on behalf of this teenage boy abused for being autistic appears to have failed, so I am trying a different tack. Below you will find the text of the letter I wrote for him. If you can, please help me disseminate this far and wide in the hopes that it will reach him, and anyone else in a similar position. Add your own kind words, experiences, and links to or quotes from disability pride resources. If this picks up enough steam, I would like to start a blog exclusively for this project.

Some resources to start:

You Get Proud by Practicing by Laura Hershey

Disability Shame Speaks by Laura Minges (make sure to follow the “next part!” links at the bottom: it’s a total of four pages and very, very good.)

Speech (without a title) by…me

The Letter:

Hi.

My name is Julia Bascom. You don’t know me, and I don’t know your name. I read an article about an assault you endured at your school though, and I want you to know that you are not alone.

I’m Autistic too. There are millions of us just like you who have been bullied and abused too. It’s wrong, it’s horrible, it’s unfair and unacceptable and none of us, especially you, deserved it. And you are not alone.

I was sexually abused by my classmates every day in Earth Science in ninth grade while my teacher stood two feet away. No one believed me. No one stopped it. Everyone laughed. But here’s what some very wise people said to me, later: just because no one believes you doesn’t mean it didn’t happen. Just because they laughed doesn’t mean it was funny. Just because they said you deserved it doesn’t mean you did.

Please, please believe me.

I’m sure you’ve been told it wasn’t a big deal. It was. It’s a huge deal. Don’t doubt that for a second. It was wrong. They are in the wrong. None of this, absolutely none of this, is your fault. They are the ones who need to work on their social skills. They are the ones who lack some basic empathy.

I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.

You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.

I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.

You can write back to me if you want to, or email me at juststimming@gmail.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.

You are not alone.

Written by Julia

August 3, 2011 at 8:17 pm

This Is Why

with 8 comments

So you need to know about Kimba.

I met Kimba three years ago. I walked into the lifeskills classroom at the middle school, and he was moaning and flapping in the corner. I kind of wanted to do the same thing but I didn’t, which meant that the teachers mistook me for a neurotypical like them, which meant that the first thing I got to learn about Kimba was that “he just tried to throw a chair at me.”

I learned a lot of other things about Kimba in the next few days. I couldn’t sit within four feet of him, because he would attack me—he didn’t like anyone except his aide, and he went after her pretty regularly too. He had successfully convinced the teachers for an entire semester that he couldn’t read at all, only to be foiled when they gave him a puzzle of animal names and he completed it perfectly. The only words he said were “NO!”, “BUH-BYE!”, and “ONE-TWO-THREE-FOUR-FIVE!”, screamed like something was breaking. About a month after I first met him, I learned two more things: he was a foster child, and the previous night he had attempted to beat his foster mother to death and had almost succeeded.

Here’s what I learned about Kimba over the next three years: he is incredibly intellectually gifted. He taught himself to read. He has a system in which he classifies every person he encounters as a different animal based on personality, appearance, relationship and attitude towards him, and the pleasantness of their encounter. He may be autistic, he may have various brain injuries, he might be selectively mute, he definitely had lead poisoning. He uses language obliquely, employing rich and innovative metaphors. He analyzes the symbolism in Disney movies, but his favorite television series is Kimba The White Lion. He taught himself how to use Google. He speed-reads. He spent the first nine years of his life in one of the most horrifically abusive environments my state has on record.

Kimba and I, now, spend most of our time in lifeskills together. We are virtually inseparable. I was the one who proved that he could read far above the level he was assigned. I am the only person he willingly lets touch his speech-generating device when he’s having trouble finding the words. He’s held my hand when I randomly dissociated, and he’s grabbed my phone and texted KIMBA when he thought I was spending too long talking to the White House. When he wants to bang his head, now, he grabs my hands and I squeeze at his ears until he can breathe again. He puts his hands on my head and does the same for me.

For three years, Kimba and I have stood (often literally) hand-in-hand, united, in our very different pain and very different ways, against a world designed to shut us out. I curled around him when he was having flashbacks and he copied my bitch-face and employed it against incompetent substitutes. I foiled his plans and told his general-ed teachers that he could, in fact, read very well, and he tried to teach me how to wink. When I left lifeskills for a while to attempt college I said good-bye and he held on and wouldn’t let go. I came back, defeated. We saw each other again and smiled with mouths that had forgotten how.

I wonder if he got so mad at me for going to Washington because he had overheard what was going to happen next.

While I was sitting in a humid room and watching as people stared at me and explained that the world would be better for everyone if we inconvenient autistics just didn’t exist, plans were being made to put Kimba away. While I was getting job offers for my distilled fury and ability to wax eloquent about how my life sucks, it was being decided that the considerable, unbelievable, overwhelming progress Kimba has made in every respect over the last three years isn’t good enough. While I was staring in disbelief as Geraldine Dawson pontificated about the suffering of “autism families”, people were sitting at tables, sipping stale coffees, and deciding that, since Kimba hasn’t recovered quickly enough from his trauma, he needs to be institutionalized.

It was announced today, and finances should be finalized by next week. On Wednesday, June 22nd, Kimba will complete the seventh grade at the middle school. He will eat an end-of-the-year cupcake that we will make, as he will not be invited to participate with his general-ed class. We will carefully gather up the last of his projects and load them into the same battered backpack he’s had for three years, a backpack that will be thrown away with his projects that night because he won’t need it—any of it—any more. We will pack up his device, the notes we’ll have scribbled to his new staff saying he can read very well, actually, and here is a Kimba-to-English dictionary, you’ll need it if he ever decides to talk to you and the notes we’ll have labored over for him: love you, miss you, you’ve grown up so much, it’s going to be okay. We’ll smile, we’ll lie, we’ll tell him that he will love his new school and that we’ll be allowed to visit.

On Wednesday, June 22nd, we’ll say good-bye and try to memorize what his smile looked like. On Thursday, June 23rd, he’ll disappear into a residential program.

They said they know he loves animals. He can work on their farm.

I now count three kids I know and have worked with who, since December, have been institutionalized. This is three out of ten. Five out of fifteen, if I push the timeline back a year. We incarcerate people because they kill other people, because they rape or because they steal or because they make our world unsafe—and now, apparently, because they are just a little too inconvenient. Funny. You don’t even get a trial when your crime is drooling or not talking, when your sin is PTSD or autism, when the thing you did wrong was being born and then not quite meeting expectations.

You just get put away.

I wanted to tell you about Kimba. I wanted to ask you what I am supposed to do tomorrow morning. I wanted to say that it doesn’t matter that things this wrong aren’t ever supposed to actually happen; they do anyways. I wanted to see if maybe, now, you understood—I don’t write to touch, to inspire, to move people, I write because this happens every day, I write because how are we supposed to keep on, I write because a thirteen year old boy is being taken away.

I wanted to tell you about Kimba, because you have to understand that he underlines everything I say and write. I wanted you to meet him before he’s thrown away like human garbage. I wanted someone to give a damn. I wanted to tell you about Kimba because, because, because

….because I can’t save this one, because I can’t save him, because we have sixty-two days, because oh god, oh god, I can’t save this one, because I forgot that even this tiny little somewhere-only-we-know only exists because nowhere is safe and nothing is allowed us, because oh, oh, oh. Because they are taking Kimba away.

Because thirteen is too young to die.

Written by Julia

April 29, 2011 at 12:42 am

Teach Me A Lesson

with one comment

I take too long in the shower, I guess, and I think my grandmother thinks it’s because I’m getting off. Actually it’s not fun at all, getting lost in the overstimulation of water and steam, forgetting where I’ve put the soap or what I was just washing, fingers aching because they don’t know how much pressure to use when shampoo-ing, slicing my thumb open when I try to hurry up because I’m being scolded through the door. It doesn’t matter; she wants to teach me a lesson about wasting water.

Teach me a lesson.

I’ve heard that before.

It’s my brother, snarling “she has to learn” while I’m crying on the floor.

It’s my dad, in the car, (in the backseat) over the phone, at the bank, whatever it takes, consistency.

It’s my sister, grabbing my signing hands to hold them still, “stop when I tell you to stop, it’s common courtesy.” (Though, of course, should I tell her to stop touching me, give me space, stop making fun of me, stop saying that, she is under no obligation.) “I want to hear your words. No. Not those words.”

Teach me a lesson.

It wasn’t said out loud, but I heard it every day from the kids in my AP classes, eyes sliding over and past me. “What’s the retard doing here?” The face the teacher makes is apologetic. It’s not for me.

Teach me a lesson.

My friends never hung out with me outside the concrete walls of our school, but they did like making me practice the things I was worst at. Look me in the eyes, hold still, let me hug you. Keep that up and I’ll poke you. It’s your reaction, Julia, that’s why we do it, Don’t talk about that. The hell is wrong with you. Just be a person. Don’t think, just be natural, be yourself. Yeah, you’ll want to lie about that. There are no rules. We’re trying to help. You’re doing it wrong.

Teach me a lesson.

I want to teach you a lesson.

I want to teach you about the boys in Honors English and the smug pride they took in calling me retarded because “hey, it means slow. You are slow. It’s true. You can’t get mad at us for telling the truth.” I want to teach you about being harassed by airport security because I crawl through the checkpoints, my hands shaking and my mind spinning, concentrating on one step at a time. I want to be there when I snap “Sorry, I can’t go any faster, I’m retarded,” and I want you to be my heart when it stops beating.

I want to teach you a lesson about never wanting to sleep with someone because they’ll see the drool on your pillow—and everyone drools, true, but everyone has a horror of drool because that’s what the retards do, and most people don’t have to worry about being mistaken for a waste of space whereas I wait patiently for the inevitable moment when my lover, my one safe person, someone I tricked into wanting to be with me, sees me for what I am.

Should it be a lesson on dying? Lying on your bead, body tingling and mind dissociating, crying because this is it, you finally get to die, as your heart finally, fucking finally matches the rest of you and just, at last, I knew it had to happen, slows down. Breathes are slower and shallower and you can’t believe it—you always knew that this couldn’t be real, that someone as awful as you couldn’t actually go on existing, and you’d always wondered if and when the moment would come when your body would finally get what the rest of the world knew. You slow, you slow, this is horrible and fantastic and so wanted, so needed, finally—and then your lungs seize up and drag in breath after breath because no. You can’t even have this.

Teach me a lesson.

I have so much to teach you.

Written by Julia

April 22, 2011 at 11:27 pm

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