Just Stimming…

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

Archive for the ‘language’ Category

A Fifth Is Two Sine Curves

with 57 comments

(This post could be seen as a self-narrating zoo-exhibit with bonus spot-the-theory-of-mind. I hope you’ll take it as a follow-up to The Obsessive Joy Of Autism, as equally about the experiences of visual processing impairments and synesthesia as about ~autism, and as a case study in the inadequacy of traditional verbal language. If I’d been taught earlier that experiences which exist independent of words are still meaningful and sufficient, I never would have had to write this.)

(This whole essay represents a dozen years of heartache, a fractured self-image knit back together, and the entire reason why I will never, ever talk about the instinctive simplicity of video editing.)

(Note: as is typical of my writings, pieces are rarely finished in the same day they are started. The voice lesson I refer to as “today” is in reality long past; in fact, due to circumstances regrettably beyond my control, it turned out to be my last. I have been unable to further explore the discovery my voice teacher and I made, and it aches.)

(This entire piece is written in a voice I don’t very much care for. My apologies.)

(I can either keep apologizing in parentheses for a lifetime, or just tell it to you.)

A fifth is two sine curves, and this is the most beautiful thing.

I’ve had a dozen years of classical musical training, and I’ve been playing with calculus for about the same amount of time. I don’t talk about either of these things with much frequency. I don’t like to sing in front of people, and I have a passionate love affair with math but hated and barely passed my classes in high school. I drink up geometry videos on youtube, and once a week I go to my voice teacher’s house and sing for the best hour of the week, and these things are secrets. Very few people know how important music and math are to me, and that’s been a deliberate choice on my part.

I don’t talk about the most sacred things, because it’s the fastest way to destroy them.

I have an intense and embodied relationship with music. Music is a lot like people, and songs are linguistic and therefore social exercises. Music teases and tells and remembers and reflects and transforms and encodes and transmits. I experience music kinesthetically, emotionally, and intimately. It is shattering.

I know a lot about music. I hate talking about it, because the things I know aren’t the same as the things you know.

My left hand doesn’t have enough coordination to permit me to play any instruments. I can, and do, sing, and I’ve spent 12 years learning to do so with surgical precision. I can’t sight-sing–I can peel apart the layers of a piece for theory, no problem, but identifying pitch and tempo and dynamic and a note’s place in the overall piece, and integrating those elements, factoring in timbre and placement, and singing them, in realtime, is simply not possible with my visual processing impairments. I rely on an ear I’ve spent years training–if there’s one other singer, or a pianist accompanying, I can do a passable imitation of first-time sight-singing even pieces I’ve never heard before.

Ever since I first joined an (auditioned, highly-selective, then-prestigious) youth choir at age eight, I’ve known that I do music wrong. At first, that took the form of being shamed for moving when I sang–music shouldn’t be a physical, embodied, tactile experience. In later years, my inability to process visually rapidly enough to sight-sing, and my difficulty holding a harmony, made rehearsal a living hell. Yet I was never kicked out, because I could still sing circles around 2/3 of the other singers, and it wasn’t that I couldn’t harmonize, just that I might sing any one of a range of acceptable harmonies and not necessarily the one I was arbitrarily assigned (or the one the composer had written,) and as long as I didn’t talk about it, no one knew I couldn’t sight-sing. (I did, of course, talk about it; lying didn’t occur to me until later years.) I trained my ear, led the 1st sopranos because the melodic options are necessarily restricted and usually sensical, kept my joy at things I had the wrong words for to myself, and kept singing.

(My life goes on
in endless song
how can I keep from singing?)

It destroyed me. I loved this, I was so good at it, it felt good and right and perfect, and yet any attempts to communicate about this were miserable failures. Singing is the only time I ever feel at home in my body, and yet I felt like a fraud; sure I could learn a new song faster than anyone using only my ear, but I couldn’t sight-sing. Clearly this was some elaborate hoax I’d engineered, clearly I didn’t have any real aptitude, and clearly, my decision not to pursue college or career in music or performance was the only ethical option.

Despite this, despite the guilt and shame and confusion, I’ve kept going to weekly lessons. It’s an hour, just me and my teacher and a piano, and as we pull songs apart and test what my throat can do, the songs resonate between my ribs. It is, essentially, an hour of breathing exercises, so it’s the most effective therapy I’ve ever had. And I’ve kept going, and today, finally, after 12 years, we figured it out.

There were signs. The music teacher at my high school had almost worked it out; he’d play two notes, and I’d hear a third, and not every student could. He talked about harmonics and melodic structure; I listened, and adored him, but had trouble talking to him. With my voice teacher, I complained that the standard system of music notation was nonsensical, bearing no correspondence to the way music actually worked, and relied on a flagrant disregard for basic arithmetic. I struggled with the idea that a fourth is supposed to sound “smaller” than a fifth, and though I could sing any note back perfectly, I couldn’t tell you which notes were higher or lower. None of the language used to communicate about music made any kind of sense to me. The spatial metaphors simply would not map. I had my own rich, dynamic, embodied and visiospatial experience of music, I could feel and see the music move, and sheet music couldn’t come close.

I’ll tell you what my teacher and I learned today, but first I need to give away my other secret: math.

My history with mathematics is, if possible, even more tortured and rapturous and bewildering than my relationship with music. As a small child, I was in love with arithmetic; my mental calculation abilities are noted on my earliest evaluations (and dismissed, of course, as splinter skills.) One of my earliest memories is of not being able to explain to a concerned teacher why 2+3=5. “Because it is,” I said. “And it’s beautiful. It just fits.” Manipulatives were meaningless for me–my eyes couldn’t process them easily, and they didn’t bear any relation to the ladders and scales of numbers in my head. I simply had to close my eyes, and think of an equation, and I would feel myself swing from number to number, landing effortlessly and securely on the answer. Easier than walking.

(There’s a hint to the eventual reveal, there.)

While I had some small troubles learning the language for arithmetic (especially for fractions, which are fun and clever enough as pointless rituals but beautiful when you realize that they actually signify multiplication and division, that you are performing meta math,) mathematics was an easy joy. Note, please, that I am talking about the art of mathematics, not the drivel and formulas we’re drilled on in school. Mathematics really is an art, and it’s inherently playful. It’s a game of “what if” and “how can I.” And when I was eight years old (and still now,) what I wanted most to figure out was how I could model, and therefore predict, events in the world around me. In particular, I was fascinated by the rate at which raindrops crossed and accumulated on my car window as my mom drove me to therapy.

So I invented the fundamental theorem of calculus.

I didn’t know I was doing this at the time, of course. I didn’t know what algebra was yet; if I’d heard of calculus, I thought it was about calculators, which I found woefully inefficient. I’d never heard of Liebnitz, and Newton had only been hit on the head by a terrifying apple, as far as I knew. I didn’t use the greek alphabet or sigma notation; I didn’t use any notation at all. I just ran some dimensional transformations in my head, checked my model for accuracy, and had a nice visual to keep myself comforted when my hands needed to be still.

Eight years later, my AP Calculus/Physics class was asked to prove the relationship between derivatives and integrals, and I got up and drew the model, and not a single one of my classmates understood. After a moment of studying what I did, Mr. Morris said, “spoiler alert, Julia just skipped to the end of the lesson and proved the fundamental theorem of calculus.”

I can’t draw it for you now; I lost the image, along with some of my more unusual human-calculator prowess, when my psychiatrist put me on the anti-psych medication regimen that ended in me dropping out of college. But I could then, and before that day, I hadn’t realized that my classmates couldn’t see that basic, innate relationship, the reason why calculus is beautiful enough to ache. I didn’t have the language for it, had never even heard of the fundamental theorem until my teacher told me that was what I’d done. I’d just been amusing myself with models and transformations, when I should have been paying attention in class.

See, that’s the thing. I struggled in math class from Algebra 1 on. I never actually took the AP calculus exam–Mr. Morris thought I’d do fine, but since I was technically auditing his class, I didn’t want to try and sit for it. And this is where the agony comes in.

Much like music, the way I experience and represent mathematics cognitively is fundamentally different from the conventional language we are taught for it. With arithmetic, this difference only really caused difficulty when new terms were being introduced. But 2+3 is always 5, and I had enough innate understanding and motivation to preserver through even the most ridiculous name choices.

This all fell apart when I got to algebra. It’s not that I lacked understanding–I’d been solving for the missing number since I was nine, and the only hardship I’d had there was, again, in comprehending the linguistic absurdity of mixing letters and numbers and shifting the missing piece to the left side of the equation. As soon as I got over that, I immediately started attempting to teach the game to anyone around me, including my four-year-old sister. Algebra wasn’t the issue. The way we represented it, modeled it, and talked about it? That was a nightmare.

Graphs on a cartesian plane have a lot of meaning for me–for another purpose (clue.) They also bear absolutely no relation to the kinesthetic and visual models I see when I craft algebraic equations. Zero. None. And I couldn’t articulate this in high school, anymore than I could make myself care about pitch or slope whether the equation came in point-slope or some other form. I didn’t understand why we were talking about graphs at all. It wasn’t until algebra 2 that someone explained to me that all of our equations were supposed to be models for those lines.

I was enraged.

I still am, thinking about it. What a stupid waste of my time. Who the fuck cared about lines? I wanted to know how to model the age distribution of my peers around me and how it shifted in relation to me as we moved through the grades, how to fit equilateral triangles with a side length of 2in inside a hexagon with 6in sides as efficiently as possible, how to predict prime numbers. Why on earth would I make an equation for a line I couldn’t even make my hands draw reliably half the time?I wouldn’t! This possibility had never occurred to me! I had better things to do!

So I didn’t care about graphs. Later, in college, my math major friend would teach me the theory behind linear algebra in half an hour, and I would concede that graphs were pretty fucking intense, but in high school, all I knew was that I was being asked to humor, to indulge teachers who were never sure if I was a genius or in the wrong class in their fetish with graphs that my eyes, more often than not, couldn’t even process as a whole.

It did not go well.

There were parts of algebra, of course, that I loved. I enjoyed modeling numeric patterns (“series,” I was told, and “summations,” I just called it numbers) like 2n + 7, and there were moments when the graphs for these, or for my favorite exponents, lined up with the stacks of numbers I saw in my head, and the graph became, fleetingly, meaningful. (It was argued that graphs themselves were by definition simply visual models of numeric patterns, and therefore should have been my favorite thing. I defy anyone to look at something like THIS

graph of 2n + 7

and honestly tell me that they instinctively see either 2n + 7 or 9, 11, 13, 15, etc. in that.) Systems of equations were a game that made me laugh and resembled the way I’d play with numbers in my notebook margins when we were supposed to be caring about matrices. Matrices were for our calculators; I was a human calculator, insulted by their existence.

My first three algebra teachers understood none of this. I did well in algebra one, as long as I wasn’t asked to graph anything; as far as I was concerned, I was doing slightly fancier arithmetic and then humoring Mr. Morris by labeling things as he wished. Algebra 2 was all about graphing though, and it made me want to die–and now, in an exciting plot twist, the equations had gotten long enough, and the graphs complex enough, that my visual process started undermining me, scrambling letters and transposing numbers and fragmenting graphs, and with it, my grade. But I passed, by the skin of my teeth, and had a brief reprieve in geometry, and then got a better teacher for precalculus who, in the last two weeks of class, realized I had a language processing problem. We stayed after school one day and hacked enough accommodations that I could FINALLY start to use the conventional vocabulary and start training my eyes to read equations like stories again, the way 2+3=5 is, and then graph the story out accordingly. Just in time for the bonus unit on calculus.

I looked at a derivative for the first time, and my models and raindrops and joy came rushing back, and I was in heaven.

Derivatives and integrals made sense because the transformations they undergo are multi-dimensional, just as the ones I assign my models are. But I didn’t ace calculus. I took an introductory course at Stanford the summer before my senior year of high school and passed on sheer intuition despite missing 1/3 of the classes, but the first few tests I took in my AP class came back with failing grades.

My teacher and I worked it out. It was, as always, a visual processing issue: permitted to solve an equation on a white board, standing up, with more space than I could possibly use, colored markers, writing as large as I needed, and only one problem presented at a time, I could earn 100%. Give me the same test, after I’d already taken it on the whiteboard, but this time package it as a two-page test on an 8×11 inches sheet of paper, and I’d get a 40%.

It seemed easy enough to accommodate: let me take my tests on a whiteboard, with my teacher dictating each problem to me one at a time, and I could be the best in the class. The beauty of reasonable accommodation! But it wasn’t that easy; the teachers were working to contract in protest of their current salary, so my teacher couldn’t stay after school or come in early to test me. If I’d had an IEP I would have been protected, but my parents were told that students with IEPs weren’t permitted to take AP classes. The solution, the administration declared, was that I would audit the class. I could sit in on every class, do every lab and homework, receive no credit, have my motivation and self-esteem destroyed by a year of failing every test but doing any in-class problem on the board perfectly, teach my class the fundamental theorem of calculus but be humiliated every day by my inability to correctly read and copy equations off a sheet of paper, and everybody won.

I don’t remember much of the class. I was an anxious, humiliated, depressive mess, unable to concentrate, still haunted by graphs. It was a combined calculus/physics class: I loved the modeling, but my language processing made the word problems we were given for physics exhausting. There are bright memories, of course–drawing out the fundamental theorem, hacking labs, solving problems at the board, practicing integrals with Tommy for fun, tutoring a classmate over Facebook chat for a test that I failed with a record- breaking amount of transcription errors but she got an A+ on. But I hesitate to call myself mathematically inclined now, and that needlessly hellish year is why.

Math and music are some of the most sacred and meaningful things in the world to me. I don’t talk about them, because that requires a 12-year trauma history and interfacing with a language that treats these two things exactly opposite of how the should be.

(Do you know the secret, yet?)

This is what I learned, at the last music lesson I ever took: I see musical compositions as the graphs I spent years being tortured with perversions of, and I move through numbers like a song.

The spatial metaphors we traditionally use for music (notes are higher or lower; a second is a whole step, a third is two whole steps, etc.) fall apart for me not only because of their flagrant disregard for basic mathematics, but also because my primary concept of music lies in harmonics: in the spaces between tonic and supertonic, in the beats of the frequency of a given pitch, and all the different ways we can stretch and collapse and layer and color them. This is what I see, this is what I hear (and the two are, in this instance, the same,) every time music plays. Sheet music is as pale an imitation of this as a graph of y=3x is of the multiplication table. And yet, the transformations I drag my models through, the process of solving an equation (and I’ve never been much of one for solving, really; just give me a model and I’m happy, and maybe that was the problem with algebra all along,) is actually perfectly encapsulated by the language and metaphors musicians use to interpret sheet music.

And I just wish that once, at some point, just once during those long twelve years, someone said to me “this language isn’t working for you. Let’s find a new one.” Because then I could have told you, at eight years old, before I could even conjugate reliably or deviate from my scripts, that:

this is what C sounds like:

sine curve

this is what G sounds like:

sine curve

this is what a fifth sounds like:

two overlapping sine curves

and this, Mrs. Lowenthall, is why 2+3=5:

sheet music

Advertisements

Written by Julia

October 31, 2012 at 10:02 pm

Metaphors Are Important: An Ethnography Of Robotics

with 12 comments

First, a story. (A little Christmas story. I call it: the story of Schmuel. Tailor of Klimovitch.)

*****

(The best part of the story is what I leave out.)

*****

I met a mini!Kurt the other day. He was very blonde, with intense brown eyes, but he was very particular about his hat, and his dad was Burt Hummel in all the ways that counted. I’d guess he was about four–his voice was still all exclamation points.

“I’M MATT!” he said, hiding his face from me, and then trying to run out of the waiting room. It was cool though–I don’t know if I even managed ahi.

He was at the stage where he was still mainly echolalic, but he was learning how to store and recombine and modify phrases to work for him. I was excited for him, and almost proud, because he’d mastered two essential skills for that–swapping pronouns, and prompting other people to remember their lines. His dad, trying to bundle him into his coat, was not playing along at first.

“I’M SO CUTE!” mini!Kurt reminded him, trying to make his arms go into the right sleeves. “I’M SO CUTE!? I’M SO CUTE?”

“Yeah,” Dad sighed, wrestling with the zipper. “You’re cute.”

“SO CUTE?”

“So cute, that’s right.”

Mini!Kurt, satisfied that everything was going according to plan, was ready to leave. “BYE!” he called, waving his hand backwards at me, a perfect mirror image.

I waved. Had my mind been more together, I would have flapped.

*****

Echolalia is metalanguage.

*****

Echolalia is an unexpected treasure hunt. You can be watching a bootleg musical you never thought would be any good, but turns out to be beautiful, and suddenly they’re going up the scale singing hot hot hot hot, and you’re back with Kimba, and he’s saying hot hot hot hot–only he’s got this elaborate metaphor about fire and anger going on right now, and here it means I think you’re mad at me, so I’m mad at you, don’t touch me.

And then you’re back at your laptop, wondering when he started watching musicals and rethinking half the things you thought you knew.

*****

Echolalia is what you use when language is too much. It’s just also what you use when it’s not enough.

These things are not opposites.

*****

Walt knows my name, but he’d rather call me Mulan. We’re on the swings, trading movie titles.

“101 Dalmations?” I offer.

“Mulan no thank you!” He chides. Considers. “Rio, with Jesse Eisenberg?”

I grin. I’d only said that once, but he’d picked up on my crush, and he offers it back to me when I am having a hard time with the conversation. I try to remember his favorite, as a peace offering. “Kung Fu Panda II, in theaters now?”

I get it right.

Months later, it will still be the best conversation of my life.

*****

Echolalia, from Echo, of Greek mythos, cursed to speak only through the words of others.

We make it work though.About the cursed: opinions aren’t the same as facts, and no one ever asked Echo.

To be fair, no one would have listened, either.

*****

As much as I can hate words, I delight in them, too. When I’m echoing, referencing, scripting, riffing and rifting, storing and combing and recombining, patterning, quoting, punning, swinging from hyperlexic memory to synesthetic connection, words are my tangible playground.

Make me talk like you, and you’ll get a bunch of syntactically sophisticated nonsense. Let me keep my memories and connections, my resonations and associations and word-pictures, and if you slow down enough, you might hear something ringing true.

These are the words I’m using right now. It’s okay if you can’t see the picture yet; I can’t either. It’s coming together though, the more I practice them.

Ethnography of robotics.

Neuropoetics.

Girls like you always get to see Ireland.

Send my love to the leprechauns.

Please don’t special-episode me.

Why don’t you trust me? Because, honey, you keep setting things on fire.

The first rule of tautology club is the first rule of tautology club.

I think they might be four separate pieces. The joy is how they come together.

The bestworst part is no one ever knowing.

*****

(The best part of the story is what I leave out.)

*****

I don’t trust my words on my own.

That’s not why I echo though.

I know it’s tempting, but, listen.

*****

Or maybe I’m lying, because I’m not brave enough to explain.

Don’t worry though. I know that Kimba loves musicals now, and Walt named me after a warrior.

We’ll get there.

Written by Julia

February 16, 2012 at 1:33 am

Theory Of War

with 6 comments

I’ve told this story before.

I didn’t have any theory of mind until I was 13.5. I have a very poor autobiographical memory, but I remember the acquisition vividly. I was in gym, attempting to serve a volleyball, and I turned to Sarah, monologuing in my head about something (a strategy I had developed last year to help me with thinking) and she was thinking. I had a mental stream of consciousness in my head. So did she. I looked around the gym. So did everyone.

I was thinking about them. They could think about me.

I would never feel safe again.

A lot of things changed with that realization. I’d never gained any information from eye contact, but now it terrified me. I’d been abused by my peers, but now I realized that there was a persistent mental component as well. That they wanted to hurt me. They thought about me being confused and scared, and they liked it. I’d been doing very well without any sort of therapy or medications for almost a year—I was back at the doctor’s within a month, got another new therapist, and soon started medication. My panic attacks began to last upwards of 36 hours. I started banging my head. I damaged my eyes. I started gouging out my skin. I got a staph infection, and I almost died, twice. I am covered in scars and discolorations.

I am told that I was not, before this discovery, an anxious child. I generally felt safe.

(Inside, if not out.)

I owe a lot to my discovery of theory of mind. I just can’t think of one positive.

I can’t pass the Sally-Ann tests, even now. The language confuses me. But I do know, now, that other people have minds, and they can think with them. About whatever they want. About me.

Which means I will never, ever be safe. I never was.

After all, it’s not just that other people have minds. It’s that they can think things I don’t. They can be thinking about me without my knowledge. But it gets worse.

They can be wrong.

Maybe because I’m autistic, and people think (there we go again, theory of mind) that this means I am a robot. I would love to be a robot, personally. I am always very concerned with accuracy. The thing that upsets me most about “autism science,” isn’t actually the dehumanization and the consequences—it’s the bad science. The most terrifying and distressing thing in the world to me is something being incorrect.

Maybe it’s because I’m autistic, and thus a robot. Maybe it’s because I’m autistic, and therefore a simpler, lesser, smaller brain and in desperate need of order. Maybe it’s because I’m autistic, and therefore abused, and I know the consequences of acting on mistaken beliefs about someone, know them in my bones.

It’s terrifying.

My ability to acknowledge other minds means that I can converse more effectively than I could before. It also means I am never, ever safe. It means that I can see people being wrong, and I can see other people accepting and believing and spreading the misinformation, and I have to keep quiet. But to me, danger and anxiety and this is wrong are all the same.

So I am never safe.

I have theory of mind, now. I’d like to call it something more accurate.

Maybe theory of war.

Written by Julia

September 27, 2011 at 6:42 pm

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

with 12 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