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.
Sugar, Self-Diagnosis, Appropriation, And Ableism: So Here’s What You Missed On Glee
Glee is a show whose buzz is owed almost entirely to manufactured controversies. Unfortunately, this latest one is invoking autism, and as an autistic person and fan, I’m weighing in. Again. I’m not f-locking. I will delete nasty comments, derailments, and personal attacks, all of which I’ve already dealt with today. For those who were lucky enough not to know: autism politics are vitriolic. Nasty stuff. Wonder if the writers know what they’ve stepped in.
So! Glee!
There’s this character, Sugar, who describes herself as having “self-diagnosed Asperger’s, so I can basically say whatever I want.” Of course, she does a really, really bad job of crip-face, and her last line is a furious “NOT ASPERGER’S!” There are a couple different takes on why she says it. I think she’s saying she doesn’t have Asperger’s. Others are saying that she’s saying that the particular rant she just gave had nothing to do with AS. Either way, actual autistic people can’t pick and chose, and she’s very, very obviously not autistic.
I think she’s brilliant. She makes me see red, she feels like a punch to the gut, but she’s brilliant.
Now, before I get into it, this is Glee, so let me just clarify a couple of things:
Anyone who thinks that Sugar’s actions won’t be addressed hasn’t been paying attention to how the show works for the past two years. Anyone who thinks that her plot has anything to do with actual autism, or the issue of self-identification in the autistic community, is putting assumptions into play that the show has never expressed an interest in. And anyone who thinks she is written as actually autistic, as some parents have been suggesting, has some serious ableism of their own to unpack.
Finally, since this conversation is also drawing in a lot of people with very little knowledge about the show: anyone who thinks that Glee trades in stereotypes and makes jokes at the expense of minorities and that’s all is really missing out on some incredibly nuanced stories, and probably won’t be able to follow a word of this. I’m not interested in defending the politics of Glee
here. If you think that Kurt’s a flaming queen and Artie is a prop and that’s that, then I really don’t have time to engage with you right now or defend something you’ve already decided is indefensible.
But! For those curious as to how someone who is autistic, into Glee, and really into analyzing disability politics on Glee is thinking about Sugar, read on!
There are three basic questions about Sugar. Why couldn’t she just be (another) bitchy character? Why is she faking a disability? And why is that disability Asperger’s?
The first (why they couldn’t just make her the rich, bitchy, and annoying girl) is the easiest.
Because this season Glee has nine, count ‘em, NINE kids whose characters and plotlines involve passing in some manner. Three of these have to do with disabilities they can’t hide. (Also, cool, it’s 3 for race, 3 for disability, 3 for sexuality.) And then we’ve got Quinn’s dirty laundry, and Emma’s everything, and it’s all kind of the same. All these characters are struggling with parts of themselves which they have, or haven’t, learned to accept after season two–and for most of them, they’re discovering that acceptance isn’t enough. There are still other people in the world, and there are still consequences.
So the utter and complete and raw awfulness of Sugar doesn’t come from her being a bitchy and entitled rich girl who can’t sing and isn’t used to getting her way. It comes from her strutting into a safe space these kids have created and pretending–and not even pretending very well–to be something she’s not, something she can turn on and off at will, for fun and profit, at no cost to herself and every cost to them.
She’s not going to get away with it. She already didn’t get into glee club.
This season of Glee is already extremely and obviously political. They’ve been building up to it for two seasons, setting characters like Mercedes and Mike and Tina up, normalizing Artie and sneaking in Brittany and turning Becky into a full and autonomous character, and everything they’ve ever done with Kurt and Blaine and Santana. Sue Sylvester was compelled to run for congress because of cuts to her sister’s medicaid. I still am not over that. She might never mention it again, but since when has that ever been something that a comedy cared about? And I’m at an advantage here because I know spoilers, but, trust me. It’s not going to stop any time soon.
But it’s not just political in the sense of “Sue Sylvester is running for congress, everyone hide.” It’s is Brittany going to graduate, it’s Santana doing whatever Sue wants because Sue implied that she’s not as closeted as she’d like, it’s Kurt and Blaine auditioning for the same role and not kissing in public, it’s Mike telling Sue Sylvester she’s being offensive, it’s the kids not even pretending to respect Will anymore and so, so much more.
It’s about living with the consequences of being who you are, and letting audiences see that. It’s also, quietly and sometimes so loudly, about changing the rules.
Sugar is a girl who has a very poor grasp on all of this, and no regard for consequences because she’s never had to live any. She’s the natural foil.
As to why she is written as faking…
I have four short little stories for you all.
One of them is about my brother. Well, my brother and I–we’re both autistic, and neither of us can pass for shit. We might not be identified as autistic straight away, but neither of us passes for normal or acceptable or typical, not even close. Now, when I was in high school lo those many years ago, I survived a lot of abuse which is really not the point here. I went to public school though, and he’s at an excellent private school–a lot like Dalton, actually, complete with abandoned out-buildings–with accommodations and is in AP US History and music theory and doing very well. And although we’ve had a tumultuous relationship, I had hoped that maybe the worst of his bullying was over, that he would escape relatively unscathed.
Our sister (neurotypical) started there a couple of weeks ago. She came to me on Thursday to tell me that I couldn’t have been more wrong.
It’s bad. It’s really bad. It’s so bad that my sister, who is just starting to notice the looks we get in public and shares no classes with him, picked up on it immediately. It’s so bad that my very socially-conscious teenaged sister is ready to go to the administration and make a scene.
It’s also very, very different from what I went through.
One of the girls harassing my brother self-identifies as having a different mental disorder every week. This week it was, apparently, Asperger’s. She’s been telling my sister that he really needs to get evaluated, “talk to someone,” “take some pills.” She’s been spreading it around.
For the record, before my brother takes his pills in the morning, Mom has to sit with him and prompt him through every bite of his breakfast. He has really, really bad ADHD, and he forgets to swallow, or he wants to sing about his plans for the day, or he needs more orange juice but on the way to the refrigerator he gets waylaid trying to rearrange the dishes on the counter.
My sister overheard a group of upperclassmen wondering if our brother had ADHD last week, because he’s just so much and so obnoxious.
“He does, so fuck off,” she snapped.
“Wait, really?” they said.
That’s the second story.
See, self-diagnosis and armchair-diagnosis is such a common thing now at this school that the idea of anyone actually having any of these disabilities, of maybe possibly god-forbid being affected by them, is something that simply does not occur to the people doing the speculation. My brother is just obnoxious, see. He doesn’t have a brain that requires a cocktail of expensive, semi-effective, and damaging drugs to hold still for six hours a day. He’s just annoying. People with Web M.D.’s from the University of Google bully him because…
I don’t know why. I don’t know why disabled people seem to trigger some sort of xenophobic kill-switch in other brains. Frankly, I don’t want to. Too many memories.
There are some things I do know, however. One of these things is that it is very, very common and popular and accepted in our society at large to say things like “I’m so OCD,” or “that chick must be bipolar,” or “oh that’s just my ADHD showing” or “I just feel so depressed some days.” It’s not okay to say those things when you actually have that disability–the number of times I’ve been scolded for mentioning that I’m autistic is too high to count. But if you don’t have a disability, you can appropriate that label to explain away and laugh off your personal failings all you want, no big deal.
There’s a lot packed into that last sentence, actually. I built it very deliberately. One of those things is the fact that we still, as a society, have not moved past the fact that a mental disability is really just a fancy code for not trying hard enough. Another is the idea that people who can’t try hard enough are jokes. And the third is the philosophy that health and morality are actually the same thing.
The dismissive, flippant way our culture talks about pretending to have mental disabilities is founded in some really ugly rhetoric. It has some really dangerous consequences for a lot of people. But it’s just so cool, so fun, so quick, so easy to say “we’re all a little autistic,” and I should stop taking everything so seriously, yeah?
Let me put it another way. The most common reaction I get to mentioning my autism is “don’t put yourself down.” A close second is “…but I like you.”
(A third involves bruising.)
That’s the second story. The third story involves teenagers, and an increasing number of adults too, looking at all of these messages–diagnostic labels just mean you don’t try hard enough, health is morality, people who don’t–there is no room here for can’t–try hard enough are jokes–and taking them to their logical conclusions. The logical conclusion is very, very simple. They have ADHD because they sometimes fall asleep in class after lunch and they don’t like doing homework.
My brother doesn’t, because he is just a failure as a human being.
The fourth story is about this marvelous TV show. It features ground-breaking and award-winning portrayals of two characters with developmental disabilities, as well as a character with OCD. During a related movie, a fan was featured with a diagnosis of Asperger’s. The other thing to know about this show is that its creators take their source material very, very seriously. Oh, not the physical location or even the laws of physics, no. But the emotional weight and impact of things, absolutely. It’s one of the most honest shows on air in that regard. This show is very, very good at showing what things, including disability, mean for the people living with them. In fact, it’s kind of what their third season looks like it will be about.
It’s also a fundamentally political show embarking on a very noisy season. And it’s chosen to show the people bullying my brother, and the people causing so much harm to disabled people every day with flippant comments, in a negative light.
Which brings me to the last point. Why is Sugar choosing Asperger’s, specifically?
Because it’s getting this level of response.
Because people are used to “I’m a little bit OCD,” and “I think I might have ADHD sometimes.” That’s completely and totally acceptable in most circles. It’s hard to make a point about something unacceptable if no one notices. Oh, Glee does that all the time, but they’re being a little less ambiguous here. They’re not going to spend a season and a half developing a storyline about overcoming casual homophobia–they’re slapping us in the face with a character’s casual ableism.
It’s a very deliberate and political choice.
I applaud it.
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!
Patronization
I received the feedback forms from the presentation I gave in August. The responses were uniformly positive—I’m just not sure I can trust them. See, I was described by various respondents as “inspiring,” a “kid,” and “a very good role-model.” (But relatively “empowered” and “self-sufficient,” as opposed, one can assume, to the Real Autistic People.)
Can we talk?
First of all, let’s get this out of the way: I am not a kid. I am, indeed, rather young, and as embarrassed about that as I am, there is nothing wrong, really, with calling me a kid. I call myself a girl. But calling my co-presenter, who just earned her doctorate, a kid? Makes me suspicious. It makes me remember how in popular conception there are no autistic adults, only children, and the children never grow up (or even reach puberty.) It reminds of how I listened to a man giving a presentation about a “community” he was designing for “children with autism”—except every one of these “children” was over the age of 21. When asked, he explained that “I call them children because they will always be children to me.”
And when that is the dominant context for these discussions? Then no. You do not get to call me a kid.
Similarly, “inspiring.” I’m amused that the same qualities which make me a failure and a disappointment in one context make me inspiring in another. But it’s not funny at all. I write and present furiously about injustice, about violence, about the things they do to us. No one who actually hears what I say walks out of the room inspired. They walk out furious. This? Is not inspiring. It’s terrifying. I don’t write to move or to touch, I write to survive, and it’s only inspiring if you paint over all the pain fueling it and everything it’s about so that you can enjoy the utterly adorable sight of someone trying to advocate for themselves.
(At the conference, Zoe asked DJ how he dealt with hate-speech. He told her to be brave, because that’s all you can do in the moment. A woman sitting next to us was so touched that she teared-up and put a hand over her heart. Not appalled that we live in a world where people argue about whether or not it’s morally justifiable to kill us. No. Inspired by our adorable attempts at bravery.)
I’m not performing for you.
This is not about your reactions.
This is not supposed to be easy.
It’s not easy for us at all.
I’m not a good role model. I’m far too angry and unpredictable for that, and if I were to mentor anyone the first thing I would tell them would be “figure out how you want to be.” There’s not a correct way to do this, there’s not one right way to be an adult autistic, there are no acceptable autistics, and it terrifies me and sickens me and makes me worry about what I did wrong to make someone think I could be any of those things.
Finally. I am utterly fascinated by the use of the descriptors empowered and self-sufficent. Those are great words, and I plan on adopting them. But saying I am those things, and other autistics aren’t or can’t be, tells me, if I had any doubts still, that you sat down for an hour and fifteen minutes and didn’t hear a word I had to say.
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.
Please, Please Believe Me
My attempt to start a letter-writing campaign on behalf of this teenage boy abused for being autistic appears to have failed, so I am trying a different tack. Below you will find the text of the letter I wrote for him. If you can, please help me disseminate this far and wide in the hopes that it will reach him, and anyone else in a similar position. Add your own kind words, experiences, and links to or quotes from disability pride resources. If this picks up enough steam, I would like to start a blog exclusively for this project.
Some resources to start:
You Get Proud by Practicing by Laura Hershey
Disability Shame Speaks by Laura Minges (make sure to follow the “next part!” links at the bottom: it’s a total of four pages and very, very good.)
Speech (without a title) by…me
The Letter:
Hi.
My name is Julia Bascom. You don’t know me, and I don’t know your name. I read an article about an assault you endured at your school though, and I want you to know that you are not alone.
I’m Autistic too. There are millions of us just like you who have been bullied and abused too. It’s wrong, it’s horrible, it’s unfair and unacceptable and none of us, especially you, deserved it. And you are not alone.
I was sexually abused by my classmates every day in Earth Science in ninth grade while my teacher stood two feet away. No one believed me. No one stopped it. Everyone laughed. But here’s what some very wise people said to me, later: just because no one believes you doesn’t mean it didn’t happen. Just because they laughed doesn’t mean it was funny. Just because they said you deserved it doesn’t mean you did.
Please, please believe me.
I’m sure you’ve been told it wasn’t a big deal. It was. It’s a huge deal. Don’t doubt that for a second. It was wrong. They are in the wrong. None of this, absolutely none of this, is your fault. They are the ones who need to work on their social skills. They are the ones who lack some basic empathy.
I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.
You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.
I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.
You can write back to me if you want to, or email me at juststimming@gmail.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.
You are not alone.
To The Beautiful Boy Working The Genius Bar At The Apple Store-
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
Metaphors Are Important: 1/4
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?
