Just Stimming…

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

Archive for the ‘prejudice’ Category

Dangerous Assumptions

with 29 comments

There is this thing that happens sometimes.

Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled.

Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say.

They are so, so excited.

And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think, hear us.

And it’s a big problem, because the way they talk…..they think the problem was that they treated their child like they were intellectually disabled, and they weren’t. But that’s not the problem. The problem is that they thought their child was intellectually disabled, and so they didn’t treat them like a person.

These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support. The people who came up with these terms came up with them for a population where there is very little doubt that significant disability is a factor. These terms don’t mean assume they aren’t actually disabled. These terms mean assume they are a person, and remember what you don’t know.

When the neurodiversity movement first got its legs, oh so many years ago, we got a LOT of pushback from people who thought we were denying disability. And we had to be clear that we meant everyone. And I worry, more and more, that certain very academic circles have left that behind, in practice as much as in theory. It makes liars out of the rest of us, and it makes a lot of work very, very difficult.

If I told the parents in question that I am thinking about this, they wouldn’t understand. They’re not saying intellectual disability doesn’t exist, they would say. But the truth is, they’re either saying that, or they’re saying thank god, it wasn’t my kid.

And it’s a slap in the face, every time.

Written by Julia

December 21, 2014 at 4:39 pm

Truth Is

with 21 comments

Author’s note: Yesterday in the blogosphere there was an Autism Positivity Day Flash Blog, sparked by one author noticing that someone had found their blog by searching “I wish I didn’t have Asperger’s.” Due to my own situation, I couldn’t participate, but today is Blogging Against Disablism Day, and I still have something to say.

Sometimes in the morning I am petrified and can’t move
Awake but cannot open my eyes
And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time
x

Dear “I wish I didn’t have Asperger’s,”

I want you to know that I understand.

That’s the first thing. This isn’t going to work if we aren’t honest with each other, so, let me be honest. I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all–when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I need you to know that I understand.

I do. I do. I want the things a cure could give me. I want to have the leading role in my own story, and parts in others’. I want to be able to do the same things everyone else can do in the same way without any extra effort. I want to not feel like a freak. I want to feel safe. I want to be someone my parents can love. I want to know I have a future, and I want to not have to blaze that trail by myself. I want to have worth. I want other people to not think they have a right to me and my space, or else I want it to stop bothering me. I want my words and experiences to make sense to other people, and I want their words and experiences to make sense to me. I want to have to work just a little less hard. I want to have a college degree, a job, and a house of my own, and I want to be able to live wherever I want. I want to be able to assume I’m a person. I want to not have a month out of the year dedicated to my brokenness. I want to be able to assume that it’s not me, it’s them. I want to wake up and not be terrified or already tired.

I want a lot of things.

It’s not a bad thing, to want things.

Check in: can you see, now, that I really do understand? I hope you can. I get a couple of visits from you, or someone with the same keyword search, every week, and I want you to know that you aren’t alone, and you aren’t wrong.

Okay. I’ve been honest with you. Now I want you to be honest with me. Can you look at the list of things I want, and tell me if you see a pattern?

I’ll wait.

While I wait, I figure, I might as well tell you some other things I’d like to stop being. In addition to no longer being autistic, I’d also like to be cured of

-being a lesbian
-being female
-being so obscenely tall

Really. I’d like to get be able to get married to someone I love in every state. I’d like to be able to walk down a dark street without fearing for my safety. I’d like to be able to sit in a chair designed for someone of my height. And none of those things are happening right now, so I guess I can either fight for them to change, or try to change myself.

Okay. Did you find the pattern? It’s okay if you didn’t. It took me awhile to understand it. It’s subtle.

Every single one of those things I want?

Have nothing to do with being autistic.

Really. Not a single, solitary one.

I should have a leading role in my own story. When I don’t, it’s because other people aren’t treating me like a person. That is not my fault. Pretty sure the one in the wrong there is the one who thinks that a disability means you aren’t a person.

Why do I want to be able to do the same things as everyone else? Why is that important to me? If I lived in a world where it was recognized that there are multiple ways to do something and that this is okay and the things I do and the ways I do them are valid and important, would I care? Would I even realize this was something to care about at all?

I would know that I have a future, and that it’s a bright and near and real one, if I knew growing up that autistic adults existed. Guess what–they do, they have for thousands of years, and on the whole, they’re doing just as well as anyone else.

I want to have worth–okay. See, if I had a friend who felt worthless, I’m pretty sure I wouldn’t tell that friend “you’re right, you’re pathetic. Please change everything about yourself.” I’m pretty sure I would tell that friend that the people making her feel worthless were abusive assholes, that she was good at plenty of things, that she was a fantastic person I was lucky to know, and that human worth isn’t some tangible thing we can gain or lose. And if I can say all of that to a friend, and mean it…why can’t I say it to myself? I’m not special. I work by the same rules as everyone else. And that means I am worth something, whether I believe it or not.

I can keep going through these. I do make sense to a few people, who take the time to listen to me the way I need to be heard, and they make sense to me. That is how relationships work, and there are lots of different ways to communicate. I can have a job, a living situation I am in charge of, and all the education I want, with the correct supports, just like everyone else. It is not my fault that the supports I need differ from the majority, and that is not an excuse or invitation to mistreat or discriminate against me. Etc etc etc.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear–there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.

But if, in order to be safe I have to stop being me?

Then I’m really not safe at all.

As long as being disabled means being unsafe, then no one is safe. Not really. Disability is a natural part of the human experience according to the ADA. Most people will experience some form of disability, for some period of time, at some point in their lives. So long as we as a society keep permitting exceptions to rules like everyone is a person and treat people like people, none of us are safe. Safety earned by staying within acceptable margins isn’t safety at all.

I promised to be honest. Part of being honest is looking at what my words actually mean, what lies beneath them, what ideas are controling what I say. And underneath every I wish I wasn’t autistic is a I wish people would stop hurting me or a I wish the world had room for me or a if I blame myself, I can feel like I’m in control.

And it’s okay that I feel this way. Well, it’s not okay that anyone ever has to feel this way, but I’m not bad or wrong for feeling it. Neither are you. But feelings aren’t the same as reality, and in the end, if we weren’t autistic anymore, there would still be people hurting others just because they can and just because no one ever told them to stop, and we’d still know that it takes only the slightest deviation before we’re vulnerable again. A cure won’t ever be able to change that.

What will change that is something a lot harder than a magic pill. What will change that is enough people saying enough is enough and doing the hard work of making our world one where everyone is welcome, all communication is honored, and everyone is safe and valued. And that is going to take time, and there are going to be days, still, as we work to make that happen, where you, where I, will wish we weren’t autistic, because sometimes it just hurts.

But it will change. It’s changing now. And you shouldn’t, and don’t, have to. You are amazing and sufficient and lovable just the way you are, and I really, really hope you’ll stick around so that one day the rest of the world can know it, too.

Written by Julia

May 1, 2012 at 4:48 pm

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

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

Dear “Autism Parents”,

with 92 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

This Is Why

with 7 comments

So you need to know about Kimba.

I met Kimba three years ago. I walked into the lifeskills classroom at the middle school, and he was moaning and flapping in the corner. I kind of wanted to do the same thing but I didn’t, which meant that the teachers mistook me for a neurotypical like them, which meant that the first thing I got to learn about Kimba was that “he just tried to throw a chair at me.”

I learned a lot of other things about Kimba in the next few days. I couldn’t sit within four feet of him, because he would attack me—he didn’t like anyone except his aide, and he went after her pretty regularly too. He had successfully convinced the teachers for an entire semester that he couldn’t read at all, only to be foiled when they gave him a puzzle of animal names and he completed it perfectly. The only words he said were “NO!”, “BUH-BYE!”, and “ONE-TWO-THREE-FOUR-FIVE!”, screamed like something was breaking. About a month after I first met him, I learned two more things: he was a foster child, and the previous night he had attempted to beat his foster mother to death and had almost succeeded.

Here’s what I learned about Kimba over the next three years: he is incredibly intellectually gifted. He taught himself to read. He has a system in which he classifies every person he encounters as a different animal based on personality, appearance, relationship and attitude towards him, and the pleasantness of their encounter. He may be autistic, he may have various brain injuries, he might be selectively mute, he definitely had lead poisoning. He uses language obliquely, employing rich and innovative metaphors. He analyzes the symbolism in Disney movies, but his favorite television series is Kimba The White Lion. He taught himself how to use Google. He speed-reads. He spent the first nine years of his life in one of the most horrifically abusive environments my state has on record.

Kimba and I, now, spend most of our time in lifeskills together. We are virtually inseparable. I was the one who proved that he could read far above the level he was assigned. I am the only person he willingly lets touch his speech-generating device when he’s having trouble finding the words. He’s held my hand when I randomly dissociated, and he’s grabbed my phone and texted KIMBA when he thought I was spending too long talking to the White House. When he wants to bang his head, now, he grabs my hands and I squeeze at his ears until he can breathe again. He puts his hands on my head and does the same for me.

For three years, Kimba and I have stood (often literally) hand-in-hand, united, in our very different pain and very different ways, against a world designed to shut us out. I curled around him when he was having flashbacks and he copied my bitch-face and employed it against incompetent substitutes. I foiled his plans and told his general-ed teachers that he could, in fact, read very well, and he tried to teach me how to wink. When I left lifeskills for a while to attempt college I said good-bye and he held on and wouldn’t let go. I came back, defeated. We saw each other again and smiled with mouths that had forgotten how.

I wonder if he got so mad at me for going to Washington because he had overheard what was going to happen next.

While I was sitting in a humid room and watching as people stared at me and explained that the world would be better for everyone if we inconvenient autistics just didn’t exist, plans were being made to put Kimba away. While I was getting job offers for my distilled fury and ability to wax eloquent about how my life sucks, it was being decided that the considerable, unbelievable, overwhelming progress Kimba has made in every respect over the last three years isn’t good enough. While I was staring in disbelief as Geraldine Dawson pontificated about the suffering of “autism families”, people were sitting at tables, sipping stale coffees, and deciding that, since Kimba hasn’t recovered quickly enough from his trauma, he needs to be institutionalized.

It was announced today, and finances should be finalized by next week. On Wednesday, June 22nd, Kimba will complete the seventh grade at the middle school. He will eat an end-of-the-year cupcake that we will make, as he will not be invited to participate with his general-ed class. We will carefully gather up the last of his projects and load them into the same battered backpack he’s had for three years, a backpack that will be thrown away with his projects that night because he won’t need it—any of it—any more. We will pack up his device, the notes we’ll have scribbled to his new staff saying he can read very well, actually, and here is a Kimba-to-English dictionary, you’ll need it if he ever decides to talk to you and the notes we’ll have labored over for him: love you, miss you, you’ve grown up so much, it’s going to be okay. We’ll smile, we’ll lie, we’ll tell him that he will love his new school and that we’ll be allowed to visit.

On Wednesday, June 22nd, we’ll say good-bye and try to memorize what his smile looked like. On Thursday, June 23rd, he’ll disappear into a residential program.

They said they know he loves animals. He can work on their farm.

I now count three kids I know and have worked with who, since December, have been institutionalized. This is three out of ten. Five out of fifteen, if I push the timeline back a year. We incarcerate people because they kill other people, because they rape or because they steal or because they make our world unsafe—and now, apparently, because they are just a little too inconvenient. Funny. You don’t even get a trial when your crime is drooling or not talking, when your sin is PTSD or autism, when the thing you did wrong was being born and then not quite meeting expectations.

You just get put away.

I wanted to tell you about Kimba. I wanted to ask you what I am supposed to do tomorrow morning. I wanted to say that it doesn’t matter that things this wrong aren’t ever supposed to actually happen; they do anyways. I wanted to see if maybe, now, you understood—I don’t write to touch, to inspire, to move people, I write because this happens every day, I write because how are we supposed to keep on, I write because a thirteen year old boy is being taken away.

I wanted to tell you about Kimba, because you have to understand that he underlines everything I say and write. I wanted you to meet him before he’s thrown away like human garbage. I wanted someone to give a damn. I wanted to tell you about Kimba because, because, because

….because I can’t save this one, because I can’t save him, because we have sixty-two days, because oh god, oh god, I can’t save this one, because I forgot that even this tiny little somewhere-only-we-know only exists because nowhere is safe and nothing is allowed us, because oh, oh, oh. Because they are taking Kimba away.

Because thirteen is too young to die.

Written by Julia

April 29, 2011 at 12:42 am

Teach Me A Lesson

with one comment

I take too long in the shower, I guess, and I think my grandmother thinks it’s because I’m getting off. Actually it’s not fun at all, getting lost in the overstimulation of water and steam, forgetting where I’ve put the soap or what I was just washing, fingers aching because they don’t know how much pressure to use when shampoo-ing, slicing my thumb open when I try to hurry up because I’m being scolded through the door. It doesn’t matter; she wants to teach me a lesson about wasting water.

Teach me a lesson.

I’ve heard that before.

It’s my brother, snarling “she has to learn” while I’m crying on the floor.

It’s my dad, in the car, (in the backseat) over the phone, at the bank, whatever it takes, consistency.

It’s my sister, grabbing my signing hands to hold them still, “stop when I tell you to stop, it’s common courtesy.” (Though, of course, should I tell her to stop touching me, give me space, stop making fun of me, stop saying that, she is under no obligation.) “I want to hear your words. No. Not those words.”

Teach me a lesson.

It wasn’t said out loud, but I heard it every day from the kids in my AP classes, eyes sliding over and past me. “What’s the retard doing here?” The face the teacher makes is apologetic. It’s not for me.

Teach me a lesson.

My friends never hung out with me outside the concrete walls of our school, but they did like making me practice the things I was worst at. Look me in the eyes, hold still, let me hug you. Keep that up and I’ll poke you. It’s your reaction, Julia, that’s why we do it, Don’t talk about that. The hell is wrong with you. Just be a person. Don’t think, just be natural, be yourself. Yeah, you’ll want to lie about that. There are no rules. We’re trying to help. You’re doing it wrong.

Teach me a lesson.

I want to teach you a lesson.

I want to teach you about the boys in Honors English and the smug pride they took in calling me retarded because “hey, it means slow. You are slow. It’s true. You can’t get mad at us for telling the truth.” I want to teach you about being harassed by airport security because I crawl through the checkpoints, my hands shaking and my mind spinning, concentrating on one step at a time. I want to be there when I snap “Sorry, I can’t go any faster, I’m retarded,” and I want you to be my heart when it stops beating.

I want to teach you a lesson about never wanting to sleep with someone because they’ll see the drool on your pillow—and everyone drools, true, but everyone has a horror of drool because that’s what the retards do, and most people don’t have to worry about being mistaken for a waste of space whereas I wait patiently for the inevitable moment when my lover, my one safe person, someone I tricked into wanting to be with me, sees me for what I am.

Should it be a lesson on dying? Lying on your bead, body tingling and mind dissociating, crying because this is it, you finally get to die, as your heart finally, fucking finally matches the rest of you and just, at last, I knew it had to happen, slows down. Breathes are slower and shallower and you can’t believe it—you always knew that this couldn’t be real, that someone as awful as you couldn’t actually go on existing, and you’d always wondered if and when the moment would come when your body would finally get what the rest of the world knew. You slow, you slow, this is horrible and fantastic and so wanted, so needed, finally—and then your lungs seize up and drag in breath after breath because no. You can’t even have this.

Teach me a lesson.

I have so much to teach you.

Written by Julia

April 22, 2011 at 11:27 pm