Just Stimming…

A land we can share (a place I can map)

Archive for the ‘appearances’ Category

#DressingWhileDisabled

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The shoes.
There are two stories I could tell you.

One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.

Two: a friend sent me a pair of shoes.

*****

One: I wore heels, once. I was in a choir, a choir that was a Really Big Deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was okay, mostly.

I liked how they sounded on the floor, so sometimes I wore them in college, or to DD council meetings, or when I went to Washington. I think they had maybe a half-inch heel.

I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.

I put on a new pair of heels, and I knew, instantly that I didn’t remember how to do this.

*****

Two: my life looks very different from high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted that she had somehow wound up with a pair of mary janes that were far too big for her. Did any crip femmes she knew want them?

They were a size 11. I usually only have 1 pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.

A few days ago, they arrived. I was having a bad hands day, so my roommate helped me open the box.

The Roommate opening the box.

I did remember how to put them on by myself.

*****

I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity: I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally. I can’t put on my own makeup or paint my nails; I can’t fasten any clothes that a typical six year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat that buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.

Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”

I am wearing the shoes.

Being able to wear heels again would be a big deal.

*****

“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.

“Why did you want these?” he asks.

“The gala,” I say, grimly. One of these days I am going to be dressed to kill.

“Okay,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.

“We’ll have to practice a lot.”

*****

One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes that I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.

Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives. We have to tell them ourselves. We have to tell them together.

I sit down, and there are two stories I can write.

One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.

Two: a friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.

I want to write a story about shoes and disability, about the connections disability community makes between people who are very short and people who are awkward crashing giants, about the ways my life has gotten so much bigger, about objects and ideas that get passed from person to person, about the ways that disabled women or crip femmes or we take care of each other when no one else will.

We’re taking it one step, one story, at a time. And these are the stories I want to see.

I am stepping out.

Written by Julia

January 31, 2015 at 11:34 pm

Dangerous Assumptions

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There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

Written by Julia

December 21, 2014 at 4:39 pm

your dreams will be reduced down to breathing, and you will be grateful

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The thing about not-being-a-person is:

They will say those people and the price of being a person is to nod and agree that yes, those people aren’t people at all.

They will have no idea who they are talking to.

You yourself will start to forget, too.

They will say a million small things that sow the seeds for violence done against you, and you will smile and let them.

You will do math, constantly.

How much do I want to be a person today? How much do I want this project to succeed? How much honesty can I afford? How much dishonesty will kill me? What is the cost of coming out? Is there a way to delay, soften, transmute? How long can I survive as half a person?

Your dreams will be reduced down to breathing.

And you will be grateful.

And no one else will know. And so it won’t be real.

You will become an expert at folding away pieces of yourself, quietly and automatically and with perfect obedience.

And you will forget that, forget all of it, forget yourself, and then come back to yourself violently as someone smiles and talks, academically or hatefully and there’s no deciding which is worse, about those people.

And you will remember that you are not a person. And you will have to decide, all over again, how much longer you can take that.

Written by Julia

March 4, 2012 at 4:35 pm

Whose Stories Get Told: Regarding Feeling Unsafe In The Glee Fandom

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“I’m in a wheelchair, but I’m still a guy.”

First, an awkwardly personal moment.

Several months ago, I was outed by another teacher to several speech pathologists at work. One of the women was completing her practicum, and her supervisor and instructor were observing her session with our pupil. I was there to keep him calm, as being watched by five or six teachers as you complete a speech exercise when you are working through selective mutism can be rather stressful. I wasn’t doing anything to draw attention to myself, just sitting nearby and redirecting or reassuring him when he needed it. I was dressed appropriately; I made sure to sit just like the women around me; I kept out of their conversation but smiled and nodded and was polite and quiet. I’m not sure exactly when it was that I made my fatal mistake. I kept my hands in my lap, but it might have been when I answered a question about his AAC device a little too knowledgeably or with a little too much enthusiasm. Perhaps it was when I noticed the tightening of his movements and suggested he have a quick break. Either way, eventually one of the women wanted to know what my job was, exactly. “Oh, she’s our intern,” the teacher said, and I smiled and nodded and then she kept talking. “She’s like our translator for half these kids. She has a really unique understanding–she’s also autistic, like them.”

And I was out.

It’s not the kind of outing you were expecting, was it?

Would you believe me that it was more terrifying, more humiliating, with worse consequences than when I was outed as a lesbian in that room earlier that year?

That’s one anecdote. Here’s another.

As a simultaneously queer and developmentally disabled fan, one of my great struggles last season was watching the ship wars between Brittana and Bartie fans. There weren’t a whole lot of Bartie fans in the first place, and I quickly figured out that, as a lesbian, I was supposed to ship Brittana. It was practically compulsory. Their relationship was groundbreaking and I was supposed to be excited and moved and relate to it and no, no one wanted to hear my thoughts or see my excitement on seeing a couple with disabilities navigating high school together. Who cared?

I wanted to know why only one story, one half of myself, counted. No one could explain.

A third story, and then to the point. Perhaps you can see it already.

I went to a college, for a while, infamous for its lesbians. I’m sure there’s a more decorous way to put it; I never cared to learn. It was a completely and utterly different world from the one I grew up in, and I loved every last queer second of it. Finally, being a lesbian wasn’t an issue!

Having disabilities still was.

I mean, how was anyone supposed to navigate a relationship with someone who didn’t like to talk, who sometimes couldn’t, who wore massive noise-blocking headphones at dinner and who couldn’t manage parties or groups of people or sometimes even just one person? What were the rules for that? Did that even happen? How do you flirt with someone who won’t make eye contact?

It’s important that I am very clear here. It’s not that my classmates were horrible people. It’s not that at all. With few exceptions they were nothing but kind–and that’s a loaded phrase, but there’s not time for it here–and universally they did know how to relate to someone who could geek out about the neuroscience (and cognitive science, and philosophy) of vision, who could help with their linguistics homework or sing along to Last Friday Night or mix screwdrivers with alchemical precision. They just didn’t know what to do when that person wore glasses because she’d damaged her eyes banging her head repeatedly against walls, or who sometimes needed to pause in the middle of a conversation and diagram a sentence so she could understand it, or who learned music so quickly with the same ears that also made her scream when she wasn’t warned for a fire drill. There weren’t any stories about girls who went to college already well-verses in mixing drinks because they’d gotten so good at mixing 125 mls of Zoloft into eight ounces of pineapple-orange juice every morning.

There weren’t any stories about people like me. I was not something to be conceived of, I was not expected. There were no scripts. I didn’t exist.

(So I didn’t count.)

Now, to the point.

I am a lesbian with disabilities. I am an autistic lesbian; I am a lesbian with bad brains.

Glee fandom has taught me that exactly half of this identity is acceptable.

I am sure I should be grateful for this. It is an improvement, after all–outside my bedroom door, I’m not allowed any of it. Being a lesbian is a good way to get myself raped or killed in my, in this, town. I know this. So I apologize for my ungratefulness, for my stubborn, bratty selfishness, when I point out…

…being half a person means that I’m still not actually a person at all.

Here’s the thing. I can’t actually turn my disability off. I can pass as less disabled, sure–not as non disabled, but less, of course, in some circumstances, if I’m prepped enough. Hey, did you catch that? I can pass. Passing is a concept that applies to ability too, not just sexuality or race? Did you know that?

Probably not, actually.

The Glee fandom, at least the parts I’m in where I encounter this problem, seems fairly knowledgeable and progressive and all those other nice, soothing words about a lot of things. People generally know what I mean if I say Kurt can’t pass or Blaine passes as white. It’s not perfect, of course, but I’m far more likely to be understood than if I say Artie can normalize himself or Brittany has become increasingly unable to pass.

Pass as what? She’s bi, everyone knows that, what else could she possibly be passing for?

(Well, actually, she’s written and played as disabled, the actress has said so.)

No she’s not. You’re giving the authors way too much credit. That must have been an accident. Sloppy characterization, bad writing, lol Glee…no. They wouldn’t write that. She’s not.

(And then this is where I finally, finally, get nasty.)

Am I an accident?

Am I sloppy?

Am I not supposed to exist?

Is my story worth telling?

It’s not supposed to be personal, except for all of the years I’ve known the answers to those questions. Yes, yes, no, no.

I think the casual impersonality of it is what makes me feel unsafe, actually. It rests on the assumption that people like that aren’t reading or participating in these discussions (how could they, they’re retarded) and that our stories don’t even exist to be told. I mean, do disabled people even have sex drives?

And yes, to be clear, I absolutely do mean it when I say I feel unsafe. I’m not sure how else I’m supposed to feel when I realize that I do not exist to large swaths of people.

A great deal of the time, passing means passing as nothing at all. I don’t exist. And you know, still, I automatically typed and that’s fine, that’s whatever after that last sentence, because you’re not supposed to make an issue of it. Not supposed to draw attention. I don’t exist.

I’m not in your stories. When I see myself, I’m wrong. I’m bad writing. I’m not in your stories, and I don’t get any stories of my own. I don’t exist to the greater world, and ultimately I’m not allowed to exist to myself.

But that’s fine, that’s whatever.

There’s a violence in invisibility, you know.

There are little speech patterns that creep in when we talk about Brittany, sometimes. About who deserves her, as if she has no agency, as if she can’t know her own mind.

(Do I? Do I get agency? Or do I just need to be grateful for whatever affection and attention I do get? Should I find the boys from ninth grade again and apologize to my abusers for kneeing one of them in the balls? Should I have known it wouldn’t get better?)

There’s a violence I still can’t talk about, in the end.

Let me take the focus off me. I’ve been debating whether or not to leave that sentence in. Let me take the focus off me, because this is not how you stay invisible. But…but keep the focus on me, because isn’t that the point? Isn’t that what this show, or at least this essay, is about? Keep the focus on me, because there are so many different ways to be invisible.

Quinn. Quinn and her slow, silent breakdown all last season. Quinn and Lucy. Blaine. Blaine and looking back and realizing that some needy, broken sophomore was trying to mentor an older, stronger kid, because he can be however you want him to be. Mercedes, swallowing a crush she knows goes beyond all reason, but reason never had much to do with it. Mercedes, good old reliable Mercedes, realizing that the moment she’s not so reliable, the moment she wants more, the moment she’s visible, is the moment she’s no longer wanted.

I’ve been all of those kids. I’ve lived all of those stories. So, so many of us had.

And when we hear that these stories don’t exist? That they’re just bad writing? Just lazy plotting, poorly executed versions of better, real, worthy stories? That they’re not worth telling on their own merits, that no one wants to see that?

We don’t argue, usually. How are you supposed to argue when apparently a story you’ve lived is just some hackneyed, inferior attempt at something worth attention?

We don’t argue, because our stories are judged unacceptable and by extension so are we, and that’s a conversation we don’t actually need to have again. Glee tells a lot of stories, and they aren’t usually the ones the real people want, and of course, we already established this, we aren’t allowed our own stories. No, of course not, and should they somehow be written and acted and shot anyways, they can still be grabbed and labeled as something different entirely, graded against an entirely different narrative, and thus still easily found wanting, derided, and thrown out.

And that’s fine, that’s whatever. That’s how it works. I just want to know…

…why.

I just want to know…who decides whose stories get told?

Who decides which are worth telling?

And why aren’t mine on that list?

Written by Julia

October 14, 2011 at 3:32 am

memo re: self advocate bloggers

with 3 comments

Blogging: not actually an ADL!
Writing long-form: not actually the same as being able to have a conversation!
Writing things on your own schedule: not the same as employable!
Verbrose speech/writing: actually a symptom of ASD!
Autistic adults: once rumored to have been autistic children!
The people you’re undiagnosing: actually have issues with feeding, toileting, sleeping, self-injury, communication, and independent living!
Privilege: a word that means something!

Written by Julia

September 22, 2011 at 11:31 pm

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.

Written by Julia

September 4, 2011 at 3:11 pm

On Being Articulate

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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 99 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

Disabled, Not Different

with 10 comments

For a very long time I used to think I was different.

I wasn’t disabled. God, no, I was super good at math and hey, I read the unabridged version of Les Miserables when I was 12! I skipped eighth grade! I would be perfectly fine if people would stop just poking me all the time.

I was just different, they said, and they said it was cool and maybe a little edgy and it made me special and it meant that I was just as good as everyone else. I was different, see, that’s why I didn’t think that I had toes if I couldn’t see them, that’s why I spent the whole hour-and-a-half of geometry seeing how high I could count by 15’s, that’s why I knew when everyone’s birthday was.

No big deal.

I was just different, see, and so I felt things differently from my peers, and different things happened to me, and things had different meanings. I was different, and my world was different. That was okay.

Except for the part where it wasn’t at all.

See, here’s the thing. There is an acceptable margin of difference allowed a person, and an acceptable range of ways to be different within that margin, and anyone who pushes beyond that gets pushed into the Uncanny Valley. People in the Uncanny Valley are neither wholly human nor entirely nonhuman, which means we get the human treatment sometimes, and other times we get beat up until the uncanny parts of us are sufficiently chipped off.

As an Uncanny Valley girl, I can trick people sometimes—kind of a lot, sometimes. So people got really, really mad when they went to sit next to me and I punched them for being too close, because what the hell, that is not what a human does. I was a bad person, tricking them like that.

So I got punished.

When the beating was over, when they let go of my wrist or told me I could maybe come to the next party, I was always, always offered an out. There is a list, somewhere, of the acceptable ways to be different, and they would suggest that maybe I could fit myself safely into one of those boxes, chip off the bad edges off myself on my own, and be a proper human. Give them a break, you know. Help myself out.

I would like the record to show that I tried.

I could be gifted, right? I took graduate courses in psychology at Stanford during my sixteenth summer, that should seal the deal—but none of the other students had their A’s dropped to B’s solely because they hid under their bed, wracked with panic attacks, instead of going to class.

I could be a theater nerd, surely. I loved to mimic people, I loved plays and theaters, I could sing, I stage-managed like no one else—but you had to know how to control your body on stage, and maybe more importantly, you had to participate in the massage trains in the green room, so being in theater was immediately out of the question for me.

I could be a manic-pixie-dream-girl, right? That was like the epitome of different, and I was so very, very different. I only wore skirts, and I said strange things and repeated things over and over and scratched patterns out on my skin. Surely I just needed love, friendship, someone to save me who also needed me to save them.

I discovered, though, that manic-pixie-dream-girls don’t bang their heads, and when someone touches them they know how to let themselves be touched. They see the world differently, but it’s an endearing and quirky and acceptable and unremittingly real view, not one that is confused and forgetful and blurred and above all fleeting. They use words differently, but they use the same words as everyone else and they seem to mean the same things.

People like manic-pixie-dream-girls. Some people even like nerds, and gifted students, and kids who spend their Saturdays painting sets.

People didn’t like me.

They were so nice to me, carefully working at smoothing out my edges until I fit into one or another of the acceptable differences they offered me, and I was so ungrateful and selfish and obsessive, not cooperating with any of it. Where did I get off, saying I wanted to kill myself, failing tests, waving my arms around, saying things that just no one says, looking over their shoulders instead of into their eyes? Fine. If I didn’t want their help, I wouldn’t get it. See how I liked it then.

See, sometimes being different isn’t the best thing about you. Sometimes it isn’t allowed. Sometimes, if you grab onto that label too much, it gets ripped away from you. Sometimes, if you say you are different too often, you get to hear, over and over and over and over again, how everyone is exactly like you.

So you get mad, and you take them at their word, and you start asking awkward questions. Were they nicknamed Droolia? Did they get sexually abused when they wiped the drool away on their collar one too many times? Did they get denied medical treatment for their broken wrist because they didn’t cry enough to be in real pain? Can they look at a person’s entire face at once and see it all? Do they come home from school and lie under a blanket for two hours until their head stops echoing from the hallways? Do they know how to mix 50 mg of liquid Zoloft into 8 oz of orange-pineapple juice so the taste is perfectly hidden? How many friends do they have, and do they see any of them outside of Honors English? Can they scream, or do their vocal cords paralyze at the first flash of any significant emotion? Have they ever completed an entire test in physics perfectly, except for the part where every number—every single one—written down on their work papers was different from those given on the exam?

Oh. It turns out that was just me.

I guess I really am different, then.

No shit. Get out of here.

The moment when the Uncanny Valley mask slips and people realize you really are just hideously outside the acceptable range of different is not a fun one. It stays very Not Fun. It extends past a moment and into a lifetime. The question is asked: if you’re not even allowed to fake being an acceptable human, what are you?

You’re disabled.

I’m disabled. I’m not different at all, really, I’m much, much more like you than anything else—but that’s not seen, that’s not allowed, and so I am disabled. My Autism is not a cute, acceptable, or advantageous difference. It’s a disability. I was not born configured for this world, and it fell to me to make up that difference, and there were so many places where I could not close the gap.

I am disabled, and I will never, never be content to call myself “different” again. When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up. When you are disabled you don’t have that luxury. When you are disabled you have to prove, over and over again, that you are a real person—and then someone forgets, or you meet someone new, and you have to start again.

That’s not a difference. That’s a disability.

My name is Julia and I’m Autistic. I’m not different; I’m disabled. I can say it now.

But then, I didn’t have much of a choice.

Written by Julia

April 24, 2011 at 2:04 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