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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.

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Written by Julia

February 16, 2012 at 1:33 am

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

To The Beautiful Boy Working The Genius Bar At The Apple Store-

with one comment

I think the first thing I need to say is sorry. You, you with the prettiest eyelashes in the world and bright liquid eyes that made me forget to breath when I forced a glimpse at your profile for politeness’s sake—you have done nothing wrong. Your only crime was being assigned a girl with an inexplicably broken computer who could break you simply by averting her gaze.

I know I hurt you without even meaning to because you are kind and beautiful with a smile in your voice and you kept trying to catch my eye and coax a connection out. You never grabbed my face, you never ordered me to look at you, you never forced me to drown in your eyes, you just kept smiling and coaxing and worrying until you were a confused an rejected puppy. You never made that my fault, either: you wracked and searched yourself for what you were doing wrong, for how you were hurting me.

I wanted to come back to the Apple Store afterwards, clutching the warm cookies I had purchased myself as part of the intricate bargain I’d worked out to permit myself to brave the mall alone. I wanted to come back, and smuggle you a cookie, careful of crumbs and keyboards, and explain.

Beautiful boy, 12 people pressed into a 12’ x 12’ space hurts me. The lights and movement in the mall hurt me, the perfume and music pouring from Hollister hurt me, the building renovations and constantly shifting stores hurt me. I came to you reeling and battered and you, kind, beautiful boy, had me leaving the store with poetry in my head.

(I wondered, kind and calm and perfect boy, if maybe you have an autistic sister or girlfriend like me, because I’ve never had such perfect, easy, accessible service.)

You seem like the sort of boy who might understand, in your fingertips and the neglected spaces behind your ears, what I mean when I whisper about disability as violence. You might understand embodying a brain and a way of speaking and moving and an existence of violence and victimization and forced memory and reminding others. You might understand shattering between bones of steal and searching for glue. You might understand as being seen as fundamentally violent yourself.

You might understand this, I think, because the compulsion to break and undo and ruin exquisite things runs as deeps in humans as our need to protect and hoard them, and I suspect the second leads to the first. This is cruelly and hideously unfair to everyone, but I suspect it is worst for the beautiful, breakable boys like you.

I wish you well. I write to you because I can hardly write this to Kody or the others, and of course I’ll never send this to you. I guard my own violent and violated beauty too closely.

I think my computer might behave now. Thank you. When I left I almost reached out and touched your arm. I almost tangled our scraped nerves together. I almost said “you have beautiful, beautiful eyes, and I do too, look.” I swallowed it down with a dozen quiet, desperate disclosures of I’m autistic instead and promised myself I’d write.

The new OS installed beautifully.

Thank you.

~Julia

Written by Julia

July 22, 2011 at 5:25 pm

Metaphors Are Important: 1/4

with 5 comments

As Kimba starts talking and typing more, and as I start to develop working relationships with other students, a lot of my assignments in lifeskills have become centered around writing. Writing, being a writer (and versus being a speaker), and teaching (is this possible?) writing have thus featured heavily in my thoughts lately.

Most of my concern lies with regard to voice.

I am a writing snob: not because I am the most eloquent, grammatically-adept, perfectly spelled starving artist to ever grace the world with her words (ask me about my journeys with commas sometime, or my passionate love affair with fragments and run-ons), but because I am a writer. I am not someone who writes; I am someone for whom there is no other option. This is the difference between “I am someone who (hatefully, regretfully, anxiously) talks” and “I am a writer.” My writing, a complete opposite to my speaking, is joy and confession and a need for both of these things, and I hope this is transparent.

I have talents that I’m not supposed to have: I can tell who crushes on who by how they stand, I can read strides, I can hear the tonal differences between an alto and a soprano singing the same line so clearly that to me they sing entirely different notes, and I can read through the lines and tell when a person doesn’t need to be writing at all. That, that is what makes me a snob, because I cannot abide a person putting pen to paper or fingers on keys when they don’t need to, when word choice is not as relevant and demanding and essential to them as breathing and syntax is about being correct and not about being evocative.

I am a writing snob, and some of the kids in lifeskills are my very favorite writers.

I could write pages of context about the impact of Kimba’s sparse, elegant, punch-to-the-gut syntax when he told me about being made to eat out of the trash, about spaghetti…no. Cheeseburger…no. Dogfood yes. Bad boy. Go outside. Stay in the yard.

(Because bad boys don’t get to eat food, but they do get to eat garbage, or wood covered in old lead paint, and they get put and kept outside, and this was the first time he ever sat me down and tried to tell me something, and he can use much more verbose syntactic structures but he was more concerned with making damn sure I understood exactly what had been done to him.)

I want Tanya to make a book from the story of her life she carefully encoded in her response to a picture I showed her of a balloon alone in the sky:

The boy bought a balloon, and it was red. He was walking and holding his balloon, and then he let go because he was stretching up to the sky, and the balloon flew away. And he wanted that balloon, but it flew away and it stayed in the sky for a month and then it got struck by lightening and exploded. Kapow! Pieces of it everywhere. The boy bought another balloon, and he lost that one, too.

(And the most important part of the story, she said, is that it is funny. It makes people laugh (because he loses one balloon, and then another). Not the boy though.

What about the balloons? I asked.

Probably not the balloons either, she confided.)

I imagine handing these manuscripts off to a crotchety old Honors English teacher I had, who writes a biweekly column in our local paper that makes me want to throw rotten eggs because he doesn’t need or even really want to write, it drips through his every sentence, he just wants to stand on a box and pontificate and evaluate, though never himself. I imagine handing him these snapshots of my students’ souls and watching his red pens slash through them. The honesty, the effect, the things they say outright as well as in silence (he had what he wanted, it disappeared, he got a replacement, that disappeared too, it’s a funny story except for how it’s not at all), the things these intellectually disabled children can do without even trying that he simply cannot…they wouldn’t matter at all.

He would be threatened by their voice.

These students have voice. Interestingly, one is a selective mute and another rarely speaks above a whisper, but when they have a story, when they need to make you understand, they have more of a voice than almost any other writer I’ve read. I’ll take Tanya’s understated she taught me how to play UNO as a reason for letting her bully pretend to be her friend over the cheerful notices the teachers and secretaries send out about field-trips and costume fees or the “Rural New Hampshire And The Single Girl” column in the paper. Tanya is honest. Tanya isn’t afraid to mean it.

A voice is something honest, a certain unique blend of said-and-unsaid, a particular flavor of syntax and vocabulary and control that stays with you long after you’ve put down the book and think you’ve understood everything you just read. It’s arresting and affecting, and my students have it in spades. I would submit that they’re really never had a choice in the matter and, given that few of them have had any practice in writing before this past month, they haven’t yet had a chance for it to be beaten out of them.

(There is one student. Her mother refuses to believe she is intellectually disabled, or treat her medical problems, and insists that she must do the physically impossible and pass as normal. She is allowed to attend Special Olympics events, which her mother coaches for, as an assistant—she signs the other kids in and out and keeps track of scores, but she isn’t allowed to compete, or smile. She writes like a caricature, like a frightened and desperate mimicry of what she is told she’s supposed to sound like. She’s not allowed a voice. She can’t mean anything, and behind every sentence is a nervous laugh or a hiccuped sob.)

These students aren’t writing novels, and they don’t let their voices out outside of specific circumstances: quiet, time with their thoughts, accessible method of expression, a clear question, and so on—the sort of things every writer needs. But because they are intellectually and/or developmentally disabled, because they need help spelling or scrawling, because their syntax is alternately sparse and cluttered, because they aren’t even really supposed to have thoughts let alone voice, because different means harder means defective means not worth it…because of all of that, it doesn’t matter what they write or how well they write it.

(I find most publications too poorly written to bother with. I have a nightly debate concerning whether or not I should just erase everything I’ve written ever because it is so shitty. I want to emphasize, again, just how elitist I am about writing, how much of a snob I am, how low my expectations were when I sat down to write with them, and how much crow I’ve eaten this month.)

These kids are writers, and it doesn’t matter because it’s not allowed, because their writing samples will be collected and graded and judged more harshly, against higher standards, than any of my essays in AP English ever were (go ahead, read the NH Alt. Assessment Standards and see for yourself. Come into our room and watch how these kids have to prove that they’re sentient on an hourly basis, and then please tell me why I still feel surprised when I see their essays thrown in the trash). People with no voice of their own and no belief that a lifeskills kid could ever have anything to say are the gatekeepers of who gets listened to, who gets read, and they superimpose zombie faces and stutters over Tanya’s stories and say we really need to focus on her handwriting.

So you see, I’m supposed to teach writing, which is less a matter of direct instruction about commas and more a matter of facilitating practice in having a voice. Drawing is just looking, and singing is just hearing, and writing is just listening to your own voice. These kids need to be told, explicitly, repeatedly, by at least one fucking person, that they have voices, and they are valuable voices, and they deserve to be heard, and the first person they should want to listen to them is themselves.

It takes practice.

What I want to know is: how am I supposed to do this, and how can I justify doing this at all, when, as Kimba will be only too happy to remind you, the ones with voices just get their tongues cut out?

Written by Julia

July 14, 2011 at 1:22 am