Just Stimming…

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

Archive for the ‘communication’ Category

The Talk

with 15 comments

There’s a new person in my life, so we’re having the how-my-body-works talk.

It’s a conversation I don’t think nondisabled people have. It goes like this: this is my body. This is how it works. It moves this way. These parts of can feel, and these can’t. This will hurt me, and this won’t. I want you to know these things. This is my body, and this is me.

“We should have the conversation about physical contact, but I don’t know how it goes,” she said.

“Well, fortunately, I’m really good at this conversation,” I said. “I have it all the time.”

I’ve been thinking a lot about the kinds of intimacy my disability forces me into. Most people don’t have to brief half the people they meet on what they can and can’t see. But the truth is that my body works like yours right up until it doesn’t, and if you aren’t ready for that, you could get hurt–or I could. So I have this conversation with dates, new doctors, friends, coworkers who are filling in and giving support. I have had this conversation on the grass, in bed, in exam rooms, on kitchen chairs. It goes like this: I have autism. That means my brain and my body have a hard time talking to each other.

Sometimes I give examples: I move funny, and I can’t always control it, and maybe most importantly, I can’t always start moving when I want to. Sometimes my skin can feel things; sometimes it can’t. Usually it comes and goes in patches. A lot of the time, I can’t figure out how to move. Sometimes I notice pain, and sometimes I don’t. Sometimes my body tries to pull itself apart. Sometimes I know in advance when I’m going to have a bad body day, but usually I don’t until I’ve dropped something all over the floor.

Some of the conversation is important: I feel pain differently, but I do feel pain. I can’t feel my body and use words at the same time. Being around other people is physically painful, always, every time, but sometimes it’s worth it. I don’t always realize I’m hurt or sick, but every time a doctor has found a part of my body shredded to bloody pieces by my own fingertips, it’s meant that there was something seriously wrong happening underneath–my hands knew before my brain did. Before I can stand up, I have to find my legs, but sometimes I get stuck. Here is how to prompt me. Here is what kind of power having those passcodes means.

Some of the conversation is weird: my body language doesn’t work like yours because I may or may not be able to move those muscles at any time–so I need you to look at me and make different assumptions. I move typically, until one minute you look at me and you see the way my hands hold a cup like a toddler, until my body twists and jerks back in joy, until I don’t move at all. I was born functionally blind, and then I gained a lot of vision, and then I lost some of it again, and now there are a lot of things I can’t see, for two different reasons. If we go into a new room, I will need you to tell me where to sit. I will ask to borrow your eyes, your hands, your brain.

It’s not a big deal, I say, and I need it to not be a big deal to you.

These are conversations I am good, or at the very least practiced, at having, but they still make me want to crawl out of my skin. Insisting on having these conversations, instead of pretending my body works in all the standard ways, means taking up space and focusing attention on myself as a disabled person. We aren’t supposed to do that. And because my disabilities aren’t necessarily visible, are easy to miss or to misinterpret at first as something else, my conversation partner might not understand why I want to have this conversation in the first place. It can be awkward and fraught–please understand this thing about me, please understand me–and there’s not much precedent. There isn’t a standard social script for this. There’s a temptation to just learn to avoid the need for the conversation entirely–just blend, just let yourself get hurt, just avoid other people entirely, rather than subjecting them to a litany of all the things that make your body different.

I still feel that way, sometimes, and sometimes I think I can get away with not having the conversation. And I can, right up until someone reaches out to me, and in the time it takes my brain to process what’s happening, decide to reciprocate, and send the necessary signals down and out to my body to start moving, the other person has paused, seen my lack of movement, and withdrawn, shuttering.

“Here is the thing about me and hugs!” I write, later. Here is the thing about me and touch. Here is the thing about me and my skin. Here is the thing about me and my eyes, me and my hands, me and my disability, me and my body. Here is the thing about me.

It’s a weird conversation. But I wouldn’t trade it for the years when I didn’t know how to have it. There were whole years when doctors and parents knew that I couldn’t see, that my leg muscles were knotted and my torso was floppy and my body didn’t listen to my brain, but no one told me, and so I thought I was bad.  My body didn’t work, I thought. I didn’t work. But that wasn’t true–it’s just that no one had taught me how my body worked, let alone how to talk about it. You shouldn’t have to be a stranger from your body. And I’m not, anymore, and I don’t want you to be, either.

This is my body, I say. Look what I found out. Look what I know now.

I want to share this with you.

 

 

Written by Julia

January 17, 2015 at 6:01 pm

Dangerous Assumptions

with 25 comments

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

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

Autistics Speaking Day, 2011

with 14 comments

Today is Autistics Speaking Day. It’s an annual holiday of the Autistic community that started last year in response to some ill-advised advocacy attempts, and I hope it continues until someday every day is Autistics speaking day. It’s one day of the year where social media and the blogosphere are reserved for the Autistic community to speak out in a concentrated effort.

Today is Autistics Speaking Day.

Today I am silent.

Part of being autistic is that things do not always go according to plan. Part of being autistic is that I can’t always synch up with everyone else. Part of being autistic is that I can’t, in fact, deliver meaningful content and communication whenever I’d like–or, really, whenever other people want me to. Part of being autistic is that I can go months without anything much to say at all, really.

Part of being Autistic is knowing that that’s okay.

Most of my writing and thinking this past month has centered on the things I’m interested in–Glee, Phineas and Ferb, Community. Mostly Glee. I’ve been doing other stuff, sure, but much of the thinking is still pre-verbal. I have thoughts I can feel stitching themselves together and lining up about college and developmental disabilities, about quite hands, about the power and terror of words like “stop” and “I need help” and “no,” about abuse, about when autistic people are listened to, and about autistic vs Autistic….but they aren’t ready yet. They aren’t even words. Most of my posts here have taken months of patience, of silence, of frustration and catharsis and self-injury and all kinds of “behaviors” and meltdowns and unpleasantness, before I could sit down and everything came together. I’m in that transitional period again now, and it’s quite uncomfortable much of the time.

I’ll wait. I’ll be silent. I’m Autistic–I’m allowed.

Today is Autistics Speaking Day. Some of us can’t speak today.

I hope you’ll still listen, when we can.

Written by Julia

November 1, 2011 at 1:28 pm

“Congratulations on your human decency”

with 6 comments

The correct reaction to hearing about systematic injustices or oppression experienced by an autistic person is not to turn to the autistic person explaining this and exclaim: “but I would never!”

That this response is in any way considered a legitimate one will never cease to baffle me.

I’m thrilled that you aren’t revolted by the idea of an autistic person having sex. I am really, genuinely, honestly excited. You know why?

Because you are rare. You’re like a unicorn. If everyone felt like you, my friend would be permitted to be alone in another room with her boyfriend of seven years.

But…oh. She’s not.

She’s turning twenty one, and she’s never been told what “sex” is.

She’s also not an isolated example. She belongs to a specific group of people–autistic, intellectually disabled, in a supervised living situation–who are routinely and almost by default denied agency over her sexuality. Other groups experience the same abuse in different ways.

You think that’s wrong? Congratulations. Then I’m probably not writing about you.

I am honestly overjoyed when a parent or an educator tells me that they don’t practice quiet hands. I am also frustrated past the point of tears, because you are not enough. You are one person refraining from abuse in a culture where these practices are expected. Your actions have an impact, yes–they also do not negate the reality I and the autistic community have grown up in. A spot of light in the darkness is invaluable, but it’s just that–a small spot of light. I’m not writing about the spots–I am writing about the overwhelming, consuming darkness.

I really don’t understand how we’ve gotten to a point where some sort of acknowledgement is expected for the teachers, professionals, and parents, the service providers and the allies, who manage to show some basic human decency. Such a state of affairs is an insult to everyone involved.

If I describe a broader, troubling trend in society that has a profoundly negative impact on me and my community, a reply of “but surely I am not a part of this trend!” is nonsensical. It says absolutely nothing about anything I described. You aren’t a part of the problem? Then what I’ve said doesn’t apply to you. Why are you bringing yourself up? It’s as if you commented that the sky is particularly blue today, and I mentioned that in Australia it’s midnight. They’re both technically true statements, but mine really isn’t conducive to a discussion of the weather here and now.

In fact, if I make a habit of such statements, I’ll probably be seen as needing some speech therapy or behavioral intervention.

You will probably be seen as a very, very patient ally.

It’s an absurd situation. It’s like a straight parent wanting praise for not kicking out their LGBT+ child, a man expecting me to finish an essay about rape with a p.s. most men aren’t rapists, it’s like me as a white person expecting a Japanese friend to finish a recounting of racial violence with a quick oh but I know you’re not like that, Julia.

Guess what! I don’t get points for meeting the bare minimum requirement of ethical human behavior! No one does! It’s the minimum. It’s what the default is supposed to be. We should be able to take it for granted.

Yet in discussions about ableism and autism, I am repeatedly confronted by this problem. When I refuse to qualify my statements with but of course some parents would never kill their child, or not that life is always perfectly easy for neurotypicals either, I am told I am being too blunt, angry, or antagonistic. Probably, it is theorized, this is because I am autistic. I must have difficulty understanding that my experiences aren’t universal, or that other people have feelings and a right to different opinions.

No, actually. Speaking–well, typing–truth plainly and as concisely and directly as I can is not the same as harshness. It probably feels unpleasant when read by a person in a position of immense privilege. I am frankly more concerned with the systematic injustices I see all around me.

I mention privilege. Privilege is a word that has a lot of meaning. I’ve been told I’m privileged for being able to articulate what has been done to me.

I really cannot think of anyone luckier.

Privilege is actually very different from luck. Privilege is a lot like water, to paraphrase Amanda Baggs. It’s been described as “not having to know” or “being able to forget”–not having to know that nothing will change for you unless they leave a bruise where someone can see, being able to forget that someone was institutionalized. A useful description here, however, is simply “used to taking up space.” People in positions of privilege–and enabled people are by definition in a place of immense privilege over disabled people–are used to taking up a lot of space. This does not mean that they are bad. It does mean, though, that when a minority attempts to claim a little bit of space for themselves, the privileged people will feel attacked. They might feel that the minority is, by trying to exercise their own voices and claim their own space, calling the privileged group intrinsically bad.

But here’s the catch–if the minority group devotes their limited attention and energy on reassuring the privileged group and helping them manage and process the transition…then the privileged group is still taking up all of the space!

There is not actually a way for the minority group–and to be specific again, I am talking about disabled people, about autistic adults–to win here. Either we let ourselves be co-opted into soothing decent people that they are in fact decent people, or we are a hostile force to be at best ignored and at worst fought. Either way, the privileged group–non-autistic people–is still the center of the conversation and still makes the rules.

It is completely unacceptable.

So, for future reference? If someone positions themselves as an “ally” and expects some sort of acknowledgement or praise or thanks for it: I disengage. I could not be less interested in having conversations which adhere to this power dynamic. I’m busy: I have a liberation to craft.

I would love it if you could join me.

Written by Julia

October 7, 2011 at 3:31 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

On Being Articulate

with 11 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