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

Archive for the ‘disability’ Category

#DressingWhileDisabled

with 94 comments

The shoes.
There are two stories I could tell you.

One: I’m clinging to my roommate’s arm, trying to (re)learn how to walk in heels.

Two: a friend sent me a pair of shoes.

*****

One: I wore heels, once. I was in a choir, a choir that was a Really Big Deal, and the high school girls had to wear character shoes. I got the lowest possible heel, and I was okay, mostly.

I liked how they sounded on the floor, so sometimes I wore them in college, or to DD council meetings, or when I went to Washington. I think they had maybe a half-inch heel.

I lost my character shoes in the move. Two years went by. I tore all the muscles in my left ankle, every last one, and I couldn’t go to physical therapy.

I put on a new pair of heels, and I knew, instantly that I didn’t remember how to do this.

*****

Two: my life looks very different from high school. I am connected now, in some pretty formal ways, to hundreds of disabled people all across the world. A couple of weeks ago, one of those people, a Facebook friend who has done a lot to show me what living with pride and joy in a disabled body looks like, posted that she had somehow wound up with a pair of mary janes that were far too big for her. Did any crip femmes she knew want them?

They were a size 11. I usually only have 1 pair of shoes at a time, and let me tell you, finding cute shoes in your size when you are over six feet tall is not easy. I said so. She sent me a picture, I noted they had heels, we worked out the logistics.

A few days ago, they arrived. I was having a bad hands day, so my roommate helped me open the box.

The Roommate opening the box.

I did remember how to put them on by myself.

*****

I am autistic. Just like the screenings warn, I walked on my toes when I was little, and until I hurt my ankle this summer, I still did. I can dance, kind of, not really. In my own way. I have a lot of trouble with conventional femininity: I wear long skirts and long hair after a religious upbringing, but I don’t have the motor skills or the patience or the social-cognitive something for most of the work required to do femme traditionally. I can’t put on my own makeup or paint my nails; I can’t fasten any clothes that a typical six year-old can’t. I used to be able to pin up my braids, but I lost that skill sometime last year after going too long without OT. The day you see me with my hair perfectly coiffed and my eyes carefully made up, in a coat that buttons and boots with no zippers, is the day you know I’ve either been married or placed on a Medicaid waiver.

Like a lot of disabled women hoping no one notices we’ve snuck into the professional world, I cling to the few scraps of traditional femininity I can hold on to with my teeth. My friend, another autistic woman in the workplace, calls it “femme-NOS.”

I am wearing the shoes.

Being able to wear heels again would be a big deal.

*****

“We’re gonna walk around the room,” my roommate says, and I nod and hang on for dear life.

“Why did you want these?” he asks.

“The gala,” I say, grimly. One of these days I am going to be dressed to kill.

“Okay,” he says. At the last gala, he helped ferry me from guest to guest, guiding me through the crowd and staving off meltdowns and making the loudest night of the year mildly enjoyable.

“We’ll have to practice a lot.”

*****

One of my other friends runs a blog called CP Shoes, about disability and shoes and some other things. I know as soon as I volunteer to take the shoes that I am going to want to write a thing for her. I’m writing, again, because some things worked out and I have a little more energy, a tiny bit of space for words left in my brain on the weekends.

Some of my friends and I are starting to talk, in various places and various ways, about #DressingWhileDisabled. There are a lot of stories about disability out there, and not a lot of them look like our lives. We have to tell them ourselves. We have to tell them together.

I sit down, and there are two stories I can write.

One: I’m autistic, and there are things I have to learn and struggle with and overcome, like wearing heels.

Two: a friend sent me a pair of shoes, and on a night dedicated to celebrating disability and community and the way my brain and my body glitch at each other, I’m going to wear them.

I want to write a story about shoes and disability, about the connections disability community makes between people who are very short and people who are awkward crashing giants, about the ways my life has gotten so much bigger, about objects and ideas that get passed from person to person, about the ways that disabled women or crip femmes or we take care of each other when no one else will.

We’re taking it one step, one story, at a time. And these are the stories I want to see.

I am stepping out.

Written by Julia

January 31, 2015 at 11:34 pm

The Talk

with 15 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I want to share this with you.

 

 

Written by Julia

January 17, 2015 at 6:01 pm

Confession Of A Woman In A Refrigerator (Speech Without A Title 2.0)

with 29 comments

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

So the thing is, most of this belongs at the bioethics conference, but, but, jesus.

I remember being in high school and not being sure why, exactly, college had to be a thing, because I was going to be dead by the time I was thirty.

(Two-thirds of the way there and I still can’t see more than ten years down the line and maybe, maybe a small part of what I’m doing is motivated by now or never, I’ll do this right.)

Why would I be dead by the time I was thirty? Well, every other girl like me never seemed to make it to womanhood, it only stood to reason.

At some point, and I’ve told this story so many times and it never stops making me want to cry, I started hearing about other disabled people. People who were older than me, people who weren’t about this thing is going to kill me one of these days, people who weren’t about living with, living with, living with, not dying from disease, people who were disabled and alive and not sick, not dying, but raising hell and building lives and screaming, screaming, screaming when we were being killed. 

People who used words like we.

I thought, we, yes. We. Okay. We can make this work.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

When you are disabled, when you are traumatized and vision-impaired and autistic, even and maybe especially when you haven’t been given those access codes yet, you learn to see yourself as the walking dead. You are vast swathes of nonexistence, cut off and left for dead at every missed milestone and swapped pronoun and bruised shin and scar on your face. There are Other People, Normal People, People, and then there is you,  and you are defined by the parts of yourself that match to everyone around you, and then the vast swathes of nothing. Disability is absence, disability is inability, disability is death, and you are a woman in a refrigerator. 

It takes you a while to learn that you aren’t the one who put you in the refrigerator. 

It takes longer to learn that it wasn’t your body, either.

A lot of us never get to the point where we can say it was you, you tried to kill me, you made me think I was dead, you screamed about the injustice of putting me in a refrigerator while you, you were the one killing me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

And you made me think it was my fault.

One day, I will write a speech that isn’t this one, this choked and untitled remixed stew of you tried to kill me, and you made me think it was my fault, and now you will listen.

When you’re disabled, you see death everywhere, and it isn’t because your body stands out or doesn’t stand at all, it’s because everyone talks about you like you’re in a refrigerator, like you’re not real, like you’re dead.

And it kills you.

They kill you.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

What I am trying to say is that of course, of COURSE, of fucking course we notice, because we can’t not, because the bioethics conference has one day for beginning-of-life issues, where they try to cut us out, and then a day for end-of-life, for those of us who slipped by, because last week twins in Belgium asked the state to kill them because no one ever told them that they didn’t have to go into the refrigerator. 

What I am trying to say is, my friend has a friend who uses a wheelchair and didn’t get screened for breast cancer because she’s already dead, right? 

And you, you, every single one of you who said we are helping, we are saving you, something cruel and unjust has been done, and then you made disability mean death and shoved us into the fucking refrigerator. You killed us.

I didn’t know how to die until you taught me.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

Question: if nobody but disabled people know that disability and death are distinct and not overlapping concepts, does anyone really know? Or are we just trees in the forest, falling (well, growing, would be the point,) with no one to hear?

What I am trying to say is, I am now Someone Who People Meet, and I know that there is a vast we out there, and I know that I am living and a woman and disabled and that none of these contradict, and I dragged myself out of the refrigerator by the skin of my teeth and said you will listen to me now, and this evening I felt sick when some friends offered to transcribe something for me, and I still can’t see myself making thirty.

And what I am saying is, this thing is going to kill me one of these days, and what is going to kill me isn’t going to be my back screaming at me or my eyes turning off or my head going through a wall, it’s going to be everyone who says we’re just trying to get you out of your refrigerator

I pulled myself out of the refrigerator you put me into the day you started grading people into people and cripples. I pulled myself out the day another woman in another refrigerator told me, like passing on a secret, we aren’t dead yet. Someone let me out of your refrigerator, and you can never put me back in there again.

lol conflating disability and DEATH so casually that nobody but disabled ppl notices.

I’m disabled. I’m not dead. I’m not in a fucking refrigerator. I am living, living, living, and I am screaming, screaming, screaming. 

And, just in case you should care…

Yeah. I noticed.

Written by Julia

January 24, 2013 at 5:39 pm

The Loud Hands Project

with 12 comments

So I’ve been busy.

INTRODUCING: The Loud Hands Project.

Our Story:

The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.

Our Impact:

The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us—typically, upon graduation, it actually gets worse. This must change.

The Loud Hands Project is a structured, multi-facetted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands”—autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.  We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”

How You Can Help:

We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation here—every little bit helps!

Spread the word! Check out the share tools on our page, and please use them! You can visit our Facebook page, tumblr, and twitter too, and tweet about the project using the hashtag #loudhandsproject.

Written by Julia

December 26, 2011 at 12:15 am

Theory Of War

with 12 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

memo re: self advocate bloggers

with 3 comments

Blogging: not actually an ADL!
Writing long-form: not actually the same as being able to have a conversation!
Writing things on your own schedule: not the same as employable!
Verbrose speech/writing: actually a symptom of ASD!
Autistic adults: once rumored to have been autistic children!
The people you’re undiagnosing: actually have issues with feeding, toileting, sleeping, self-injury, communication, and independent living!
Privilege: a word that means something!

Written by Julia

September 22, 2011 at 11:31 pm

On Being Articulate

with 14 comments

They say I’m articulate.

(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)

I’m really quite lucky I have such a command of language.

(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)

My verbal agility is a sign of something, they’re sure.

(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)

I’m really quite social.

(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)

I can answer every question you might ever have.

(Except for what do you need or how do you feel or do you want anything or is this okay.)

I can request independently and answer yes-no questions reliably.

(I can request independently because I never make requests, which means independence, which means I must not have to but I could if I did, right? But if you ask me if I need help I will say no, and if you ask, as my hands fly around my ears and my shoulders go tight and small, if I’m okay, I will say yes because I can’t say no and if I could it would mean more talking and less space and I will say anything at all to get you to go away until my brain is my own again.)

I am verbose and prosaic in my speech.

(I am as helpless to stay silent when you speak to me as I am to move when I need to do laundry. I freeze, staring at my dirty clothes, and every cognitive break I own clamps down because I can’t, because there are too many steps, because this has been the Summer Of Laundry Wars and I have lost. But there are no steps at all in unhinging my jaw and going somewhere very far away and echoing, echoing, reciting and remixing scripts about Why I’m Not In School and What I Did This Summer and Why We Deserve Human Rights until the tape runs out.)

I have such a good grip on the English language.

(And such a poor grip on reality, going somewhere still and quiet and out of my head while my mouth turns tricks for you.)

I’m never told I’m impolite or out of place or off script.

(Bad, too serious, perseverative, disconnected, hateful, boring, too enthusiastic, dogmatic, of course. All of those. And that’s just for talking about a show I like, without even stepping on anyone’s toes. For being happy, for getting excited about something, for trying to share. For saying something that wasn’t an answer to a question. But everything’s fine, and I’m very polite, I’m very well trained.)

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

(I never disagree with you to your face, and you’ll probably never hear about it because the gore in my stomach when you tell me I must be very high-functioning gets pulled down by the fear of quiet hands and you must not understand and I know putting yourself in other people’s shoes is hard for you.)

I’m a Forgettable Autistic.

(As a child, I didn’t cry when I broke my wrist, which meant I didn’t feel pain. I read about social skills when I was bullied, so I wasn’t mistreated. I didn’t cry when I was abused, so it wasn’t abuse. Now, I tell you it’s fine and I walk away, and maybe I sat in a hallway for two hours the other week, unable to remember how to stand, but I can tell you I’m fine so I must be.)

I’m articulate.

(So you don’t have to listen.)

Written by Julia

August 31, 2011 at 6:40 pm

Dear “Autism Parents”,

with 99 comments

I want to clear a couple of things up.

1.

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

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

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

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

2.

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

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

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

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

3.

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

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

4.

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

5.

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

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

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

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

6.

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

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

(Is Stephen Hawking low-functioning?

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

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

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

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

7.

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

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

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

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

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

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

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

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

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

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

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

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

9.

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

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

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

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

I call bullshit.

10.

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

On days like today?

It’s just a lifeline.

Written by Julia

August 23, 2011 at 1:57 pm

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

with one comment

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

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

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

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

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

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

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

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

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

The new OS installed beautifully.

Thank you.

~Julia

Written by Julia

July 22, 2011 at 5:25 pm

Metaphors Are Important: 1/4

with 5 comments

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

Most of my concern lies with regard to voice.

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

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

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

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

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

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

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

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

What about the balloons? I asked.

Probably not the balloons either, she confided.)

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

He would be threatened by their voice.

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

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

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

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

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

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

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

It takes practice.

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

Written by Julia

July 14, 2011 at 1:22 am