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Archive for the ‘personal’ Category

Response

with 20 comments

When I was a little girl, I was scared.

That sentence has taken two months to write.

When I was a little girl, I was scared.

When I was a little girl, I was a lot of things. I was functionally blind, and other kids teased me about my huge, staring eyes. When I was a little girl, I was somber. When I was a little girl, I was remote. When I was a little girl, I was devout.

When I was a little girl, I was scared, and I was alone.

*****

I don’t know how to tell you about growing up scared and alone, except that I don’t want to, and maybe that says enough. I can tell you, though, what changed. What changed is that I was fifteen, and I found this.

I was fifteen, and I spent months circling Amanda Baggs’ site, skimming the front page (the background and url were different then,) afraid to click on any of the posts, testing and tasting the words autism and autistic and okay over and over in my mouth. I had found someone like me. I had found someone like me, and they were fine.

It was months before I could look at this straight on, accept it, and click a post to read. Eventually I was brave.

When I was fifteen, I stopped being alone.

When I was fifteen, I stopped being alone, and that meant I could stop being scared.

*****

A little more than a month after I wrote Quiet Hands, I woke up and found that the number of hits on this site had erupted. Quiet Hands had gone viral, and there were a dozen comments waiting in moderation, links all over facebook, emails. I was bewildered–it was a stupid, personal post I’d written in the middle of the night to process a flashback a terrible character on a wonderful show had triggered–and overwhelmed by the attention. My friends can attest to my state that week–head-banging, bewildered William Schuester did something good by accident, obsessively relaying the ever-increasing hit-count as my words died out. I told one of them:

The irony in writing about what I write about is that you write about not-existing, and then you very suddenly exist.

I’m not so good at handling that.

But as I adjusted, as I pieced together the history of what happened and approved comments and somehow, strangely, kept existing, I started being able to read what people were saying. I started getting emails from parents who wanted me to know that they’d brought the piece into IEP meetings and had it written into the IEP that their child would be allowed to stim and move, from parents who’d talked to their child and asked if this had happened to them, told them to come and tell if it ever did, from teachers who’d thrown away their Quiet Hands posters.

I get a couple of these a week, now, and I’ve never been able to respond because I cry every time I read them.

*****

When I was a little girl, I wanted more than anything for someone to tell the loud, looming people to stop.

*****

(No one ever did.)

*****

There’s another class of responses I’ve gotten. Autistic people, writing in. Sometimes only a word, a word scraped out and bled through with meaning I understand and never will be able not to.

Yes.

*****

Thank you. 

In my school, it was “sit on your hands.”

You remind me I’m a person.

I feel a little less alone.

******

I see another little girl, flapping in the pharmacy.

Raising my arms comes a little easier, every time.

Written by Julia

December 13, 2011 at 3:57 pm

Posted in advocacy, personal

Stuff And Also Things

with 5 comments

This is a post of short, housekeeping things that are not enough for posts in and of themselves but together form one thing. It is not an essay.

So!

I haven’t really written anything since October. This is because I am Autistic, and I am inconsistent and cannot communicate on anyone else’s schedule–or even one of my own. I do have some essays planned to finish and go up soon. I actually have dozens of drafts on my computer, ranging from the rest of Metaphors Are Important to whole new series and a bunch of other things. But they aren’t ready yet, and that’s okay.

I say “that’s okay,” mostly to remind myself. I have a lot of anxiety surrounding my writing, and in particular this site.

Which brings me to my next item of business…

I cannot usually answer comments. It’s in part an access issue, as well as a matter of anxiety, discipline, and time, and it’s also a protective mechanism–my language isn’t the best for brief comments, and I have no desire to start a comment war. It’s my general internet policy, which I try to follow with varying degrees of success. I have similar issues answering emails. I wasn’t going to ever explicitly state this, but it turns out that just because I’m not writing doesn’t mean people aren’t reading, and since Quiet Hands (and more recently, Obsessive Joy) exploded, I’ve gotten more comments than I ever thought this blog would see.

A lot of those comments have made me cry, as much as the attention has made me want to run away. I am planning on posting a more specific response tomorrow, but for now I just want to say thank you. Thank you. Thank you for reading, thank you for listening, thank you for taking action, and thank you for letting me know that all three of those happened. I cherish your comments.

In the interest of directing you to something similar to read, an idea that needs to go viral, I’d like to link you to The Unbroken Spectrum: Stockholm Syndrome, over at Shift Journal. I did not write it. It’s important.

I’ve been working on several projects since October, all related in odd ways, which you can expect to hear more about soon.

I also participated in ASAN’s ELSI  symposium at Harvard Law this weekend, which was fantastic. I don’t have words for this experience, and I don’t know that I ever will, beyond too much excitement and optimism to be contained.  I’ll link to the youtubes when they are available. I spoke briefly about the gap between theory/law and what actually happens to autistic people. I actually spoke much more briefly than I would have liked, since my vision cut out about halfway through my response and I could no longer read what I’d scripted out. Perils of being a self-advocate.

And that’s what you’ve missed since October! Hopefully things will be back to normal here tomorrow. Thanks for bearing with me.

Written by Julia

December 12, 2011 at 5:41 pm

Posted in personal

Whose Stories Get Told: Regarding Feeling Unsafe In The Glee Fandom

with 7 comments

“I’m in a wheelchair, but I’m still a guy.”

First, an awkwardly personal moment.

Several months ago, I was outed by another teacher to several speech pathologists at work. One of the women was completing her practicum, and her supervisor and instructor were observing her session with our pupil. I was there to keep him calm, as being watched by five or six teachers as you complete a speech exercise when you are working through selective mutism can be rather stressful. I wasn’t doing anything to draw attention to myself, just sitting nearby and redirecting or reassuring him when he needed it. I was dressed appropriately; I made sure to sit just like the women around me; I kept out of their conversation but smiled and nodded and was polite and quiet. I’m not sure exactly when it was that I made my fatal mistake. I kept my hands in my lap, but it might have been when I answered a question about his AAC device a little too knowledgeably or with a little too much enthusiasm. Perhaps it was when I noticed the tightening of his movements and suggested he have a quick break. Either way, eventually one of the women wanted to know what my job was, exactly. “Oh, she’s our intern,” the teacher said, and I smiled and nodded and then she kept talking. “She’s like our translator for half these kids. She has a really unique understanding–she’s also autistic, like them.”

And I was out.

It’s not the kind of outing you were expecting, was it?

Would you believe me that it was more terrifying, more humiliating, with worse consequences than when I was outed as a lesbian in that room earlier that year?

That’s one anecdote. Here’s another.

As a simultaneously queer and developmentally disabled fan, one of my great struggles last season was watching the ship wars between Brittana and Bartie fans. There weren’t a whole lot of Bartie fans in the first place, and I quickly figured out that, as a lesbian, I was supposed to ship Brittana. It was practically compulsory. Their relationship was groundbreaking and I was supposed to be excited and moved and relate to it and no, no one wanted to hear my thoughts or see my excitement on seeing a couple with disabilities navigating high school together. Who cared?

I wanted to know why only one story, one half of myself, counted. No one could explain.

A third story, and then to the point. Perhaps you can see it already.

I went to a college, for a while, infamous for its lesbians. I’m sure there’s a more decorous way to put it; I never cared to learn. It was a completely and utterly different world from the one I grew up in, and I loved every last queer second of it. Finally, being a lesbian wasn’t an issue!

Having disabilities still was.

I mean, how was anyone supposed to navigate a relationship with someone who didn’t like to talk, who sometimes couldn’t, who wore massive noise-blocking headphones at dinner and who couldn’t manage parties or groups of people or sometimes even just one person? What were the rules for that? Did that even happen? How do you flirt with someone who won’t make eye contact?

It’s important that I am very clear here. It’s not that my classmates were horrible people. It’s not that at all. With few exceptions they were nothing but kind–and that’s a loaded phrase, but there’s not time for it here–and universally they did know how to relate to someone who could geek out about the neuroscience (and cognitive science, and philosophy) of vision, who could help with their linguistics homework or sing along to Last Friday Night or mix screwdrivers with alchemical precision. They just didn’t know what to do when that person wore glasses because she’d damaged her eyes banging her head repeatedly against walls, or who sometimes needed to pause in the middle of a conversation and diagram a sentence so she could understand it, or who learned music so quickly with the same ears that also made her scream when she wasn’t warned for a fire drill. There weren’t any stories about girls who went to college already well-verses in mixing drinks because they’d gotten so good at mixing 125 mls of Zoloft into eight ounces of pineapple-orange juice every morning.

There weren’t any stories about people like me. I was not something to be conceived of, I was not expected. There were no scripts. I didn’t exist.

(So I didn’t count.)

Now, to the point.

I am a lesbian with disabilities. I am an autistic lesbian; I am a lesbian with bad brains.

Glee fandom has taught me that exactly half of this identity is acceptable.

I am sure I should be grateful for this. It is an improvement, after all–outside my bedroom door, I’m not allowed any of it. Being a lesbian is a good way to get myself raped or killed in my, in this, town. I know this. So I apologize for my ungratefulness, for my stubborn, bratty selfishness, when I point out…

…being half a person means that I’m still not actually a person at all.

Here’s the thing. I can’t actually turn my disability off. I can pass as less disabled, sure–not as non disabled, but less, of course, in some circumstances, if I’m prepped enough. Hey, did you catch that? I can pass. Passing is a concept that applies to ability too, not just sexuality or race? Did you know that?

Probably not, actually.

The Glee fandom, at least the parts I’m in where I encounter this problem, seems fairly knowledgeable and progressive and all those other nice, soothing words about a lot of things. People generally know what I mean if I say Kurt can’t pass or Blaine passes as white. It’s not perfect, of course, but I’m far more likely to be understood than if I say Artie can normalize himself or Brittany has become increasingly unable to pass.

Pass as what? She’s bi, everyone knows that, what else could she possibly be passing for?

(Well, actually, she’s written and played as disabled, the actress has said so.)

No she’s not. You’re giving the authors way too much credit. That must have been an accident. Sloppy characterization, bad writing, lol Glee…no. They wouldn’t write that. She’s not.

(And then this is where I finally, finally, get nasty.)

Am I an accident?

Am I sloppy?

Am I not supposed to exist?

Is my story worth telling?

It’s not supposed to be personal, except for all of the years I’ve known the answers to those questions. Yes, yes, no, no.

I think the casual impersonality of it is what makes me feel unsafe, actually. It rests on the assumption that people like that aren’t reading or participating in these discussions (how could they, they’re retarded) and that our stories don’t even exist to be told. I mean, do disabled people even have sex drives?

And yes, to be clear, I absolutely do mean it when I say I feel unsafe. I’m not sure how else I’m supposed to feel when I realize that I do not exist to large swaths of people.

A great deal of the time, passing means passing as nothing at all. I don’t exist. And you know, still, I automatically typed and that’s fine, that’s whatever after that last sentence, because you’re not supposed to make an issue of it. Not supposed to draw attention. I don’t exist.

I’m not in your stories. When I see myself, I’m wrong. I’m bad writing. I’m not in your stories, and I don’t get any stories of my own. I don’t exist to the greater world, and ultimately I’m not allowed to exist to myself.

But that’s fine, that’s whatever.

There’s a violence in invisibility, you know.

There are little speech patterns that creep in when we talk about Brittany, sometimes. About who deserves her, as if she has no agency, as if she can’t know her own mind.

(Do I? Do I get agency? Or do I just need to be grateful for whatever affection and attention I do get? Should I find the boys from ninth grade again and apologize to my abusers for kneeing one of them in the balls? Should I have known it wouldn’t get better?)

There’s a violence I still can’t talk about, in the end.

Let me take the focus off me. I’ve been debating whether or not to leave that sentence in. Let me take the focus off me, because this is not how you stay invisible. But…but keep the focus on me, because isn’t that the point? Isn’t that what this show, or at least this essay, is about? Keep the focus on me, because there are so many different ways to be invisible.

Quinn. Quinn and her slow, silent breakdown all last season. Quinn and Lucy. Blaine. Blaine and looking back and realizing that some needy, broken sophomore was trying to mentor an older, stronger kid, because he can be however you want him to be. Mercedes, swallowing a crush she knows goes beyond all reason, but reason never had much to do with it. Mercedes, good old reliable Mercedes, realizing that the moment she’s not so reliable, the moment she wants more, the moment she’s visible, is the moment she’s no longer wanted.

I’ve been all of those kids. I’ve lived all of those stories. So, so many of us had.

And when we hear that these stories don’t exist? That they’re just bad writing? Just lazy plotting, poorly executed versions of better, real, worthy stories? That they’re not worth telling on their own merits, that no one wants to see that?

We don’t argue, usually. How are you supposed to argue when apparently a story you’ve lived is just some hackneyed, inferior attempt at something worth attention?

We don’t argue, because our stories are judged unacceptable and by extension so are we, and that’s a conversation we don’t actually need to have again. Glee tells a lot of stories, and they aren’t usually the ones the real people want, and of course, we already established this, we aren’t allowed our own stories. No, of course not, and should they somehow be written and acted and shot anyways, they can still be grabbed and labeled as something different entirely, graded against an entirely different narrative, and thus still easily found wanting, derided, and thrown out.

And that’s fine, that’s whatever. That’s how it works. I just want to know…

…why.

I just want to know…who decides whose stories get told?

Who decides which are worth telling?

And why aren’t mine on that list?

Written by Julia

October 14, 2011 at 3:32 am

Quiet Hands

with 361 comments

TW: Ableism, abuse

Explaining my reaction to this:

means I need to explain my history with this:

quiet hands

quiet hands

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…

.

Written by Julia

October 5, 2011 at 2:36 am

Posted in ableism, autism, glee, personal

Theory Of War

with 11 comments

I’ve told this story before.

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

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

I would never feel safe again.

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

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

(Inside, if not out.)

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

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

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

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

They can be wrong.

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

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

It’s terrifying.

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

So I am never safe.

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

Maybe theory of war.

Written by Julia

September 27, 2011 at 6:42 pm

Patronization

with one comment

I received the feedback forms from the presentation I gave in August. The responses were uniformly positive—I’m just not sure I can trust them. See, I was described by various respondents as “inspiring,” a “kid,” and “a very good role-model.” (But relatively “empowered” and “self-sufficient,” as opposed, one can assume, to the Real Autistic People.)

Can we talk?

First of all, let’s get this out of the way: I am not a kid. I am, indeed, rather young, and as embarrassed about that as I am, there is nothing wrong, really, with calling me a kid. I call myself a girl. But calling my co-presenter, who just earned her doctorate, a kid? Makes me suspicious. It makes me remember how in popular conception there are no autistic adults, only children, and the children never grow up (or even reach puberty.) It reminds of how I listened to a man giving a presentation about a “community” he was designing for “children with autism”—except every one of these “children” was over the age of 21. When asked, he explained that “I call them children because they will always be children to me.”

And when that is the dominant context for these discussions? Then no. You do not get to call me a kid.

Similarly, “inspiring.” I’m amused that the same qualities which make me a failure and a disappointment in one context make me inspiring in another. But it’s not funny at all. I write and present furiously about injustice, about violence, about the things they do to us. No one who actually hears what I say walks out of the room inspired. They walk out furious. This? Is not inspiring. It’s terrifying. I don’t write to move or to touch, I write to survive, and it’s only inspiring if you paint over all the pain fueling it and everything it’s about so that you can enjoy the utterly adorable sight of someone trying to advocate for themselves.

(At the conference, Zoe asked DJ how he dealt with hate-speech. He told her to be brave, because that’s all you can do in the moment. A woman sitting next to us was so touched that she teared-up and put a hand over her heart. Not appalled that we live in a world where people argue about whether or not it’s morally justifiable to kill us. No. Inspired by our adorable attempts at bravery.)

I’m not performing for you.

This is not about your reactions.

This is not supposed to be easy.

It’s not easy for us at all.

I’m not a good role model. I’m far too angry and unpredictable for that, and if I were to mentor anyone the first thing I would tell them would be  “figure out how you want to be.” There’s not a correct way to do this, there’s not one right way to be an adult autistic, there are no acceptable autistics, and it terrifies me and sickens me and makes me worry about what I did wrong to make someone think I could be any of those things.

Finally. I am utterly fascinated by the use of the descriptors empowered and self-sufficent. Those are great words, and I plan on adopting them. But saying I am those things, and other autistics aren’t or can’t be, tells me, if I had any doubts still, that you sat down for an hour and fifteen minutes and didn’t hear a word I had to say.

Written by Julia

September 4, 2011 at 3:11 pm

Dear “Autism Parents”,

with 98 comments

I want to clear a couple of things up.

1.

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

6.

“But my child!” you say. “My child can’t feed themselves! My child needs diapers! My child cannot be left unsupervised! My child is medically affected!”

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Stephen Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

On days like today?

It’s just a lifeline.

Written by Julia

August 23, 2011 at 1:57 pm