Archive for the ‘autism’ Category
Truth Is
Author’s note: Yesterday in the blogosphere there was an Autism Positivity Day Flash Blog, sparked by one author noticing that someone had found their blog by searching “I wish I didn’t have Asperger’s.” Due to my own situation, I couldn’t participate, but today is Blogging Against Disablism Day, and I still have something to say.
Sometimes in the morning I am petrified and can’t move
Awake but cannot open my eyes
And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time x
Dear “I wish I didn’t have Asperger’s,”
I want you to know that I understand.
That’s the first thing. This isn’t going to work if we aren’t honest with each other, so, let me be honest. I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all–when I knew that, if I had a chance, I’d take a cure in a heartbeat.
I need you to know that I understand.
I do. I do. I want the things a cure could give me. I want to have the leading role in my own story, and parts in others’. I want to be able to do the same things everyone else can do in the same way without any extra effort. I want to not feel like a freak. I want to feel safe. I want to be someone my parents can love. I want to know I have a future, and I want to not have to blaze that trail by myself. I want to have worth. I want other people to not think they have a right to me and my space, or else I want it to stop bothering me. I want my words and experiences to make sense to other people, and I want their words and experiences to make sense to me. I want to have to work just a little less hard. I want to have a college degree, a job, and a house of my own, and I want to be able to live wherever I want. I want to be able to assume I’m a person. I want to not have a month out of the year dedicated to my brokenness. I want to be able to assume that it’s not me, it’s them. I want to wake up and not be terrified or already tired.
I want a lot of things.
It’s not a bad thing, to want things.
Check in: can you see, now, that I really do understand? I hope you can. I get a couple of visits from you, or someone with the same keyword search, every week, and I want you to know that you aren’t alone, and you aren’t wrong.
Okay. I’ve been honest with you. Now I want you to be honest with me. Can you look at the list of things I want, and tell me if you see a pattern?
I’ll wait.
While I wait, I figure, I might as well tell you some other things I’d like to stop being. In addition to no longer being autistic, I’d also like to be cured of
-being a lesbian
-being female
-being so obscenely tall
Really. I’d like to get be able to get married to someone I love in every state. I’d like to be able to walk down a dark street without fearing for my safety. I’d like to be able to sit in a chair designed for someone of my height. And none of those things are happening right now, so I guess I can either fight for them to change, or try to change myself.
Okay. Did you find the pattern? It’s okay if you didn’t. It took me awhile to understand it. It’s subtle.
Every single one of those things I want?
Have nothing to do with being autistic.
Really. Not a single, solitary one.
I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault. Pretty sure the one in the wrong there is the one who thinks that a disability means you aren’t a person.
Why do I want to be able to do the same things as everyone else? Why is that important to me? If I lived in a world where it was recognized that there are multiple ways to do something and that this is okay and the things I do and the ways I do them are valid and important, would I care? Would I even realize this was something to care about at all?
I would know that I have a future, and that it’s a bright and near and real one, if I knew growing up that autistic adults existed. Guess what–they do, they have for thousands of years, and on the whole, they’re doing just as well as anyone else.
I want to have worth–okay. See, if I had a friend who felt worthless, I’m pretty sure I wouldn’t tell that friend “you’re right, you’re pathetic. Please change everything about yourself.” I’m pretty sure I would tell that friend that the people making her feel worthless were abusive assholes, that she was good at plenty of things, that she was a fantastic person I was lucky to know, and that human worth isn’t some tangible thing we can gain or lose. And if I can say all of that to a friend, and mean it…why can’t I say it to myself? I’m not special. I work by the same rules as everyone else. And that means I am worth something, whether I believe it or not.
I can keep going through these. I do make sense to a few people, who take the time to listen to me the way I need to be heard, and they make sense to me. That is how relationships work, and there are lots of different ways to communicate. I can have a job, a living situation I am in charge of, and all the education I want, with the correct supports, just like everyone else. It is not my fault that the supports I need differ from the majority, and that is not an excuse or invitation to mistreat or discriminate against me. Etc etc etc.
In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.
What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear–there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all.
As long as being disabled means being unsafe, then no one is safe. Not really. Disability is a natural part of the human experience according to the ADA. Most people will experience some form of disability, for some period of time, at some point in their lives. So long as we as a society keep permitting exceptions to rules like everyone is a person and treat people like people, none of us are safe. Safety earned by staying within acceptable margins isn’t safety at all.
I promised to be honest. Part of being honest is looking at what my words actually mean, what lies beneath them, what ideas are controling what I say. And underneath every I wish I wasn’t autistic is a I wish people would stop hurting me or a I wish the world had room for me or a if I blame myself, I can feel like I’m in control.
And it’s okay that I feel this way. Well, it’s not okay that anyone ever has to feel this way, but I’m not bad or wrong for feeling it. Neither are you. But feelings aren’t the same as reality, and in the end, if we weren’t autistic anymore, there would still be people hurting others just because they can and just because no one ever told them to stop, and we’d still know that it takes only the slightest deviation before we’re vulnerable again. A cure won’t ever be able to change that.
What will change that is something a lot harder than a magic pill. What will change that is enough people saying enough is enough and doing the hard work of making our world one where everyone is welcome, all communication is honored, and everyone is safe and valued. And that is going to take time, and there are going to be days, still, as we work to make that happen, where you, where I, will wish we weren’t autistic, because sometimes it just hurts.
But it will change. It’s changing now. And you shouldn’t, and don’t, have to. You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.
Metaphors Are Important: An Ethnography Of Robotics
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.
Autistics Speaking Day, 2011
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.
Quiet Hands
TW: Ableism, abuse
Explaining my reaction to this:
means I need to explain my history with this:
1.
When I was a little girl, they held my hands down in tacky glue while I cried.
2.
I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.
“Quiet hands,” I whisper.
My hand falls to my side.
3.
When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.
4.
In a classroom of language-impaired kids, the most common phrase is a metaphor.
“Quiet hands!”
A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:
“Quiet hands!”
I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.
The literal meaning of the words is irrelevant when you’re being abused.
5.
When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.
6.
Hands are by definition quiet, they can’t talk, and neither can half of these students…
(Behavior is communication.)
(Not being able to talk is not the same as not having anything to say.)
Things, slowly, start to make a lot more sense.
7.
Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.
We threw the straps away. His old school district used them.
He was seven.
8.
Terra can read my flapping better than my face. “You’ve got one for everything,” she says, and I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself.
But if they see my hands, I’m not safe.
“They watch your hands,” my sister says, “and you might as well be flipping them off when all you’re saying is this menu feels nice.”
9.
When we were in high school, my occasional, accidental flap gave my other autistic friend panic attacks.
10.
I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.
My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.
My hands are an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.
When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.
My hands are more me than I am.
11.
But I’m to have quiet hands.
12.
I know. I know.
Someone who doesn’t talk doesn’t need to be listened to.
I know.
Behavior isn’t communication. It’s something to be controlled.
I know.
Flapping your hands doesn’t do anything for you, so it does nothing for me.
I know.
I can control it.
I know.
If I could just suppress it, you wouldn’t have to do this.
I know.
They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”
I know.
I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.
I know.
I need to have quiet hands.
I know. I know.
13.
There’s a boy in the supermarket, rocking back on his heels and flapping excitedly at a display. His mom hisses “quiet hands!” and looks around, embarrassed.
I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking.
(Flapping is the new terrorist-fist-bump.)
14.
Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you…
if you…
if you…
15.
Then I…
I…
.
Theory Of War
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.
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.
memo re: self advocate bloggers
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!
On Being Articulate
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.)
Dear “Autism Parents”,
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.
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