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July 14, 2011 / Julia

The Greatest Crime In Television

Sometimes I think the greatest crime in television is caring.

Giving a damn is already practically illegal anyways, so it makes sense. A lot of the time, in fact, giving a damn is actually more of a punishable offense than anything actually offensive. I get yelled at for organizing books too efficiently, for Chrissakes. It doesn’t even stand imagining, what happens when we say stop it, don’t call them that, you’re talking about another person, do you mean to, do you understand, you can’t do that. When I ask someone to please don’t say “retarded,” it hits me, you’re working in a fucking special ed classroom for crying out loud, your student is three feet away, what are you thinking, it is agreed that the problem is that I can’t take a joke.

I cried for ten minutes when they said “the ayes have it” last night and New York got marriage equality, and Dad told me to quiet down, he was trying to sleep. I didn’t know what was worse—not being able to tell anyone about the results, not being able to tell anyone about the newest cut that barely even stings anymore, or being so fucking grateful that at least I wasn’t called dyke, because we know how that one goes.

(My brother gave me a sarcastic thumbs-up, and my sister told me that she’d known it would pass, and she’d give the rest of the country ten years. I wanted to congratulate her on being so blithe, I wanted to ask if she knows how long a wait ten years is, I wanted to remind her that at least mom would go to her wedding, I wanted to ask her if she’s ever watched people vote on her right to make a family and if she’s ever seen them vote it down. But that’s not funny or neat or easy and thus allowed, that’s messy and hurt and I would mean it, and so I kept quiet.)

I was at the White House conference on bullying in March, which framed violence, in all forms—physical, sexual, emotional, verbal—against students as a civil rights issue. In a group discussion, some immigrant students from the Chicago public school system told us, in excruciating detail, about the physical, racially-based violence they experienced every day. They said that, whenever they tried to report this violence to a teacher or administrator, the same response would come back:

“Why are you telling me this? You’re making me upset. You’re hurting my feelings.”

(The students are being beaten, are failing classes because of chanted racial slurs whenever they sit down, are afraid to come to school. The teachers feel bad because the students are implying that perhaps, if they are not safe at school, the teachers are not doing their jobs properly. The teachers’ feelings are hurt. So the students, the victims, get punished again.)

It’s not a racial thing. It’s not an issue of Teh Gay, or of cripples and madmen and fools. Strip away the aesthetic revulsion, the fear and the ignorance, the complicated socio-economic histories and the familial scars, and people still like to treat other as disposable objects, good for entertainment and not much else. We’re each other’s toys, and if we don’t amuse sufficiently then we probably need to be whacked a few times, the way you hit a CD-player when it skips. Maybe we need new batteries. Probably it’s easier to just throw us away.

(Some people say we evolved the way we did because we’re so good at killing, and we certainly killed off our preceding species quickly enough. It’s a quick hop-skip-jump from amusement to mascot to mystery to menace, and broken human playthings seem to implicitly threaten that we’ll steal, or at least break, all the other toys too. Loss and sacrifice and discomfort and fear we might be next can all trigger our kill-switches, apparently.)

Perhaps I’ve lived an exceptionally awful life, but I find that hard to believe when I watch flocks of smiling, popular people being silently unhappy together. There are reasons people lie about and keep secret how they feel and what they think, and I’ve seen one too many terrified college girls fighting and drinking and cutting all their hair off and then going to class the next morning with bright, store-bought smiles to believe that it’s just me.

True, I get furious, sometimes, when I tell someone about being mistreated because of my autism and they respond with a tale of their own frustration at the hands of some cruel peer or unnecessarily draconian teacher or boss. One of these things is not like the other, and the whole thing never reads as anything other than the familiar “that never happened, that story isn’s allowed, let me show you the script, let me show you the acceptable ways to be and get hurt, too bad they’ll never apply to you.”

Sometimes, though, these things are almost exactly the same in all the ways that viscerally matter. I’m abused because I’m a not-person. To hurt someone without using your fists you just make them feel like a not-person, or, at the very least, a not-okay-person, and you can do that to anyone. Everyone suffers because, as humans, we’re just naturally very good at hurting each other.

Which is not to say that we aren’t also very good at making each other feel incredible, or at least happy, or even just warm and safe for an hour, and that can be enough. We have families and stories, and these are not only terrifying weapons, but also powerful things that can create a lot of good—and when they don’t, we can make new ones. There’s joy and beauty in the world, and sometimes another human seems to hold it all in the spaces between their joints.

Maybe that’s why we hurt each other so very well.

It’s all very stark and dramatic, and that’s a useful way to make a point, but life doesn’t come with points. Life comes kind of blurry and murky and bled-together and wonderful, and maybe looking back you can scoop some of it into a coherent narrative, but the words are never quite sufficient. After all, they said I could get married means something bright and happy, but there’s also something angry and resentful and undefined, because they never asked if their marriage offended me. And then we have to think about all the things marriage means and represents, and what it means for the couples who, watching the votes be counted, whisper that they’ll still love each other just as much if it doesn’t pass. Life is just too big for the words we have and the stories we learn, except for when it’s the other way around.

Most of us don’t go around slaying dragons and going on quests of many miles. Happily-ever-afters are unsettlingly complicated, and the problem with slaying one Evil Overlord is that another always pops up. Curiously, Evil Overlords like to disguise themselves as people we rely on and must be polite to, and quests of many miles tend to consist of driving oblivious children to and from soccer practice, piano lessons, and gymnastics every day for ten years and never driving over and off the bridge.

The mass of men lead lives of quiet desperation is a truism, but no one ever asks why, and if maybe it’s because we think we missed the train to something spectacular years ago and there’s no honor in what we have left, and so we don’t claim the words and stories we were taught to dream as our own. We grow up, and we stop reading children’s literature and picture books, and we’re told that archetypes and mythos are something besides history and biography, and we lose our sense of importance and solidity and any sense of ownership of our own story or right to any words which might mean anything.

Stealing a person’s words, their ability to look clearly at something and see it and know that they do, is the smallest and easiest way to kill someone.

What I mean is, I say child abuse, and people think of my student, caged and beaten and raped and made to eat out of the garbage for nine years. Well, yes and no—yes, because if anyone deserves those words, it’s him, and no, because things are rarely so harsh and vivid and obvious. There’s a reason children like him are so rare and his situation comes up in textbooks as a Worse Case Scenario, one of the Worst in the History Of Our State. Life is a game of ripples and things adding up and subtle variations.

My student will never be the same because he never got to be not-afraid for his first nine years, until eventually he just couldn’t feel fear anymore. I will never be the same because they made me take my clothes off in the car once because I’d drooled all over them, and because I only had to be hit a couple of times before a raised voice was enough to have me looping those experiences and hitting my self, all on my own. His father hit him in places no one could see. I wished someone would just hit me one more time, now that I knew what I could do, so someone might believe me and maybe it would stop. One of those experiences is stark and dramatic and mercifully rare; one is quiet and common and so easy to justify, overlook, pass over. People see my student’s misshapen collarbones and fall silent in horror; no one notices that after a lifetime of being slapped and grabbed for flapping I can’t raise my arms from my side, because the whole point was to make me unnoticeable.

Our situations are different, and so it gets decided that one of them doesn’t count. Similarly, people who have never had the horror of growing up in a community where you get taken away if you’re not good enough declare that since my student’s institutionalization was stopped at the eleventh hour, it doesn’t count. (Just like, if you run away fast enough from the homophobes on the street corner, somehow magically nothing could have happened. Just like if you never say no, you must mean yes. Just like, if they don’t put a gag in your mouth or knock you out, you should be able to fight them off.) I’m glad the world is so very tidy and convenient and adjustable that knowing you were supposed to spend the rest of your life somewhere unspeakably horrible because you just aren’t good enough has no effect on a thirteen-year-old boy. I mean, clearly someone needs to tell him this, as he for some reason feels otherwise. Someone should also probably tell his classmates, who now know—and who always knew, but now it’s reconfirmed and a little more fresh in their minds—exactly how unsafe they are.

It doesn’t count because he doesn’t (we, they, you, don’t) count.

There aren’t any stories about that.

I have this niggling suspicion, though, that there are an awful lot of people in the world who have been told that they don’t count, don’t get to be in the stories, things were never quite bad enough, or maybe they were too bad to be real. I have this feeling that there are an awful lot of us, and that if we just stopped keeping ourselves a secret, we might blow that lie out of the water.

This is where Glee comes in.

Glee tells you, right in the pilot episode, that it’s about not-people discovering that they’re people. Oh sure, there are layers and complications and distractions and other features and a million different ways to say the same thing, but it really does come down to that. It always surprises me, because since when is that a story I see on my TV?

We consume media in a context of constant, casual violence against some and dismissal of everyone else. We expect to be entertained in the middle of an environment in which no one, no matter how skinny or blonde or popular or perfect, can expect to be safe and happy for long. If our television program is going to do anything besides lie to us about following our hearts and happy endings, we’d rather it at least didn’t mean it.

So Glee gets sneaky about it. They give us Bryan Ryan, a Special Guest Character who gets an entire episode devoted to what it is to be a closeted gay American without every actually showing any icky attraction to men. They delve down into layers of nuance and complicated human relationships and the terrible compromises we make and they talk outright about being closeted and cutting yourself off without ever pulling a visceral homophobic reaction from the audience because Neil Patrick Harris (and can we talk about that casting choice?) kissed a guy.

That same episode we have Artie, our wheelchair-using character, learning how to tell people that he doesn’t care about his legs, he doesn’t need to be fixed, he’s got other things he’s worried about. Difference is, he’s not some sort of coded metaphor. You see his chair before you see him. And so all the other characters (and the audience) see is a poor, suffering boy (in a wheelchair, just a cripple bound to his chair) miserable because he can never achieve his dream of being a dancer. Artie spends the entire episode negotiating what all of that means, and how to make himself heard and believed through all the other noise, while, yes, getting a little sad that he can’t just get out of chair and make the entire problem go away. But the episode is called Dream On, and being able to walk doesn’t change the people around you.

The point these two intertwined storylines make is that it doesn’t matter how badly you want people to hear your own voice, they much prefer the dream they have of you in their heads. It’s an entire episode, on the heels (and a continuation) of the similarly-themed Laryngitis, devoted to showcasing that on every level, from casting to costumes to musical numbers to the actual lines delivered, Glee plays around with metaphors and story-telling and scale and variations on an idea and performance versus experience to look at how humans negotiate the space around each other.

(There’s very little joy in the Glee Club, sometimes, if that gives you an idea of what they mean.)

We start out with the writers taking a complicated, unjust experience, stripping away the salient, fundamentally other part of it, and delving waaaaay down into it and all its complexity and nuance. It becomes a story about the fucked-up ways people treat each other, and the fucked-up consequences that has. The audience, to some degree, gets it, and likes it, because it’s not ANGRY, it’s not about TEH GAY, it’s not scary and divisive and other. We don’t have to change the way we treat whole classes of people because of this now, do we?

(I think the point being made is that yes, we do, but it’s entertainment so if you don’t want to hear that, you won’t.)

Probably the most frustrating part of Glee is that the show focuses on universal problems of human relation, but it’s aired in a world where only a few characters out of the oversized cast are universally regarded as human. The only two characters played and seen straight-away as human, right from the start, are Finn and Will. Besides being straight white middle class males, they have two other very important, tightly-linked things in common:

  1. They’re allowed to rage.
  2. They don’t hurt people on purpose.

Kurt (gay) snarls in his songs, Quinn (teenage pregnancy) yells that she’s furious, Puck (juvenile delinquent and Lima Loser) explodes and punches people and gets sent to juvvie, and those are all Bad Things. Finn kicks over a chair, Will terrifies his wife, and those things are fine. Those things are natural, healthy, human reactions to the (not-) people around them being awful. Kurt and Quinn and Puck learn to be angry quietly, to smile through their teeth, to take names and social security numbers and sometimes just to wait. Finn and Will are allowed to feel, and show, their hurt.

Their rage is safe and predictable and about socially sanctioned things and won’t ever shake anything up. Kurt, Quinn, Puck? They might hurt someone’s feelings.

They might make someone uncomfortable.

They might ask someone to risk something.

Kurt and Quinn and Puck can hurt people just by breathing, just by being there, and it will always, always, be deliberate. Finn and Will only ever hurt people by accident, and that’s the catch. Finn and Will are people. Good people. Good people don’t, can’t hurt anyone, and since Will and Finn are Good, and since they didn’t mean it to hurt, didn’t even know it could, it doesn’t.

(They’re not like my student’s father, so obviously intent on destroying people, and so their actions have no consequences. They’re good, and if we feel hurt by them, then that’s our fault, and if we argue, then we’re bad, bad people, trying to sully their goodness. That’s just not who they are.)

Isn’t that a cool trick?

(That is the real reason my phobia of lifting my arms, and my student’s near-institutionalization, and so many other things, Don’t Count—what was done was never meant to hurt, and the people who did it don’t hurt, that’s just not who they are, the whole thing is really just better off forgotten, it doesn’t ever need to feature, it doesn’t (we don’t) count.)

But what Glee does such an uncannily good job at showcasing is just how, exactly, anyone can make anyone else Not Count, and what that does to all involved. Simultaneously, it fleshes out people we see first through Will and Finn’s eyes—because we can’t see not-people through their own eyes—and turns them from cheap and easy stereotypes into painfully real, immediate, people. The process is messy and long—two seasons in and it’s still not quite complete—and it’s complicated by the fact that it happens with an audience going through the same process. People laughed at Bryan Ryan’s quips and cried at Artie’s tears and didn’t quite put the pieces together. The cast donned shirts stamped with their shame and sang about baby I was born to survive, and it wasn’t quite obvious enough to change everything.

(It’s entertainment, it’s not supposed to mean anything, and it has to be packaged such that people can ignore the real parts if they don’t want to see them. It’s not allowed to count.)

But a few of us get our words and our stories back, and if they were any more obvious about it, it wouldn’t work at all.

It’s (we’re) all the same, you see.

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July 14, 2011 / Julia

Metaphors Are Important: 1/4

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

Most of my concern lies with regard to voice.

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

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

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

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

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

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

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

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

What about the balloons? I asked.

Probably not the balloons either, she confided.)

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

He would be threatened by their voice.

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

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

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

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

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

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

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

It takes practice.

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

April 29, 2011 / Julia

This Is Why

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.

April 24, 2011 / Julia

Disabled, Not Different

For a very long time I used to think I was different.

I wasn’t disabled. God, no, I was super good at math and hey, I read the unabridged version of Les Miserables when I was 12! I skipped eighth grade! I would be perfectly fine if people would stop just poking me all the time.

I was just different, they said, and they said it was cool and maybe a little edgy and it made me special and it meant that I was just as good as everyone else. I was different, see, that’s why I didn’t think that I had toes if I couldn’t see them, that’s why I spent the whole hour-and-a-half of geometry seeing how high I could count by 15’s, that’s why I knew when everyone’s birthday was.

No big deal.

I was just different, see, and so I felt things differently from my peers, and different things happened to me, and things had different meanings. I was different, and my world was different. That was okay.

Except for the part where it wasn’t at all.

See, here’s the thing. There is an acceptable margin of difference allowed a person, and an acceptable range of ways to be different within that margin, and anyone who pushes beyond that gets pushed into the Uncanny Valley. People in the Uncanny Valley are neither wholly human nor entirely nonhuman, which means we get the human treatment sometimes, and other times we get beat up until the uncanny parts of us are sufficiently chipped off.

As an Uncanny Valley girl, I can trick people sometimes—kind of a lot, sometimes. So people got really, really mad when they went to sit next to me and I punched them for being too close, because what the hell, that is not what a human does. I was a bad person, tricking them like that.

So I got punished.

When the beating was over, when they let go of my wrist or told me I could maybe come to the next party, I was always, always offered an out. There is a list, somewhere, of the acceptable ways to be different, and they would suggest that maybe I could fit myself safely into one of those boxes, chip off the bad edges off myself on my own, and be a proper human. Give them a break, you know. Help myself out.

I would like the record to show that I tried.

I could be gifted, right? I took graduate courses in psychology at Stanford during my sixteenth summer, that should seal the deal—but none of the other students had their A’s dropped to B’s solely because they hid under their bed, wracked with panic attacks, instead of going to class.

I could be a theater nerd, surely. I loved to mimic people, I loved plays and theaters, I could sing, I stage-managed like no one else—but you had to know how to control your body on stage, and maybe more importantly, you had to participate in the massage trains in the green room, so being in theater was immediately out of the question for me.

I could be a manic-pixie-dream-girl, right? That was like the epitome of different, and I was so very, very different. I only wore skirts, and I said strange things and repeated things over and over and scratched patterns out on my skin. Surely I just needed love, friendship, someone to save me who also needed me to save them.

I discovered, though, that manic-pixie-dream-girls don’t bang their heads, and when someone touches them they know how to let themselves be touched. They see the world differently, but it’s an endearing and quirky and acceptable and unremittingly real view, not one that is confused and forgetful and blurred and above all fleeting. They use words differently, but they use the same words as everyone else and they seem to mean the same things.

People like manic-pixie-dream-girls. Some people even like nerds, and gifted students, and kids who spend their Saturdays painting sets.

People didn’t like me.

They were so nice to me, carefully working at smoothing out my edges until I fit into one or another of the acceptable differences they offered me, and I was so ungrateful and selfish and obsessive, not cooperating with any of it. Where did I get off, saying I wanted to kill myself, failing tests, waving my arms around, saying things that just no one says, looking over their shoulders instead of into their eyes? Fine. If I didn’t want their help, I wouldn’t get it. See how I liked it then.

See, sometimes being different isn’t the best thing about you. Sometimes it isn’t allowed. Sometimes, if you grab onto that label too much, it gets ripped away from you. Sometimes, if you say you are different too often, you get to hear, over and over and over and over again, how everyone is exactly like you.

So you get mad, and you take them at their word, and you start asking awkward questions. Were they nicknamed Droolia? Did they get sexually abused when they wiped the drool away on their collar one too many times? Did they get denied medical treatment for their broken wrist because they didn’t cry enough to be in real pain? Can they look at a person’s entire face at once and see it all? Do they come home from school and lie under a blanket for two hours until their head stops echoing from the hallways? Do they know how to mix 50 mg of liquid Zoloft into 8 oz of orange-pineapple juice so the taste is perfectly hidden? How many friends do they have, and do they see any of them outside of Honors English? Can they scream, or do their vocal cords paralyze at the first flash of any significant emotion? Have they ever completed an entire test in physics perfectly, except for the part where every number—every single one—written down on their work papers was different from those given on the exam?

Oh. It turns out that was just me.

I guess I really am different, then.

No shit. Get out of here.

The moment when the Uncanny Valley mask slips and people realize you really are just hideously outside the acceptable range of different is not a fun one. It stays very Not Fun. It extends past a moment and into a lifetime. The question is asked: if you’re not even allowed to fake being an acceptable human, what are you?

You’re disabled.

I’m disabled. I’m not different at all, really, I’m much, much more like you than anything else—but that’s not seen, that’s not allowed, and so I am disabled. My Autism is not a cute, acceptable, or advantageous difference. It’s a disability. I was not born configured for this world, and it fell to me to make up that difference, and there were so many places where I could not close the gap.

I am disabled, and I will never, never be content to call myself “different” again. When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up. When you are disabled you don’t have that luxury. When you are disabled you have to prove, over and over again, that you are a real person—and then someone forgets, or you meet someone new, and you have to start again.

That’s not a difference. That’s a disability.

My name is Julia and I’m Autistic. I’m not different; I’m disabled. I can say it now.

But then, I didn’t have much of a choice.

April 23, 2011 / Julia

Teach Me A Lesson

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.

April 23, 2011 / Julia

This Is Our Reality

Last year my parents and I were talking about prenatal testing. It comes up—I work in a special ed room, I had just learned about the abortion rates for Down Syndrome, we live on a street with four autistic kids, and I was discovering the Disability Internet. So I asked if they would have aborted me had they known how I would turn out.

My parents told me last year that, had they known I would have been born autistic, they would have gotten an abortion.

My parents would have aborted me.

I kind of want to just stop typing there.

This is real. It happens. It happens all the time.

(I know five other sets of parents with adult autistic children who have said the same thing. I have yet to find a pair in real life that wouldn’t. This is real. It happens.)

It’s all fun and games when I snark about ableism and eugenics and people respond with condescension and strawmen and the same non-arguments I’ve heard hundreds of times before. It wants me want to write additional fun facts about how the usual silencing tactics in this conversation are ineffective against me—you can attribute to me things I never said, but I won’t defend them because I am autistic and your errors, while interesting, are mostly just amusing and kind of annoying. I’m used to people not listening. It was the first fact I ever wrote about.

You know what’s not fun and games?

My parents would have aborted me.

Even knowing me, (then) eighteen years later. They would have aborted me.

It’s not that we don’t love you. We just didn’t know if you would have wound up like that kid up the road.

I don’t write as some Super Shiny Aspie (TM). I write as someone who spends her days with that kid up the road. I write as someone who has spent the past year of her life as someone who was told that her existence is a lamentable mistake caused by a technological lag. I write as someone who belongs to a group that isn’t good enough to be allowed to exist.

I’m not putting this under a cut. I want you to have to scroll through this. I want to scream about the gaping, oozing wound carried by every autistic—the you shouldn’t be here written in the margins of our files—and I want someone to listen.

The reality of an autistic person is this: your parents didn’t want you. They wanted a child they felt they deserved. They go to support groups and have a mourning period after a diagnosis which takes place in a cold white room with whispered voices. They are probably told to put you in an institution—as you play at their feet—or else you are subjected to hours of behavioral modification which does nothing for your ability to function as an autistic person and maybe a little something for your ability to embarrass your parents a little less.

People give up on you.

You go to school and the other kids call you retard, never bothering to learn your real name. You don’t sit with anyone at lunch. You play by yourself and you like that better than the abuse. The point comes where you realize that you can’t lift your arms anymore. They’ve been slapped so often for flapping that you have a terror of moving them.

You learn that different means harder means defective means not worth it.

Perhaps, like everyone else, you are born knowing that. One day you realize it’s meant for you. This is probably the same day you receive some official confirmation that people would really rather you weren’t there.

Everyone is generally very nice about it. What are you supposed to do about the nice people who don’t want you there?

You start, maybe, to learn some words to describe what it is to be you. You aren’t sure that they’re entirely the right words—you’re learning them from other autistics, and they get yelled at a lot of speaking up and trying to help you—and everyone else insists that they are very much the wrong words. You keep trying, though, because it’s the first time anyone’s ever let you think that maybe no one is ever good enough to exist and yet we keep on existing, and that means something to you.

Eventually you start saying these things on your own. (Maybe. If you’re lucky. If you’re listened to by anyone, which is a crapshoot anyways.) After a while you stop being confused by the things people yell back at you, because you realize they have nothing to do with what you are saying, and everything to do with you saying something.

The reality of an autistic person is this: you shouldn’t exist, and your defiance means you must be punished.

So no. I’m not anti-science. I don’t think being disabled is super fun. I don’t think anyone deserves to suffer, ever. (And, because I mention abortion, I’m also pro-choice!) I’m mostly someone who is tired of being run off the rails whenever she suggests that maybe she’s a person, too or that’s not very nice with very rational, condescending platitudes about intent and think of the family members and your life is wrong, that never happened and this must be so difficult for you, let me explain and above all: you’ve got it backwards, the world is actually flat.

I am someone who should have been, would have been aborted.

I am finally, finally speaking up for myself. You don’t have to listen. But you don’t get to tell me to shut up because my voice doesn’t belong. You are certainly allowed to take what I say however you want, especially as a personal affront directly targeted at you (I once used a similar configuration of words to something she is snarking about! I am the only person who has ever said this to her ever. She is attacking me, or at the very least responding directly to my mutterings. This is probably as close to a conversation as she can manage!) I understand that it must be very hard for you, hearing all of these inconvenient people speaking up and speaking out and making you uncomfortable. I will, however, ignore you attempts to make me shut up, stop, go die and speak a little louder instead.

I should have been aborted, and that is real, that is common, and I will share that story over and over again until I (finally) die because nonautistic people seem to think this conversation reduces down to something other than please go away you are scary.

My reality is that I’m not supposed to exist.

But I do.

April 5, 2011 / Julia

Anatomy Of An Autistic

Writing is a struggle against silence. ~Carlos Fuentes

Passing as a non-autistic, passing as neurotypical, means that you never get to actually be human. Be a person. You just learn how to get really good at faking it. It’s not good, it’s not healthy, and yet how can you say no to a trick that gets you the human treatment, college, a job, a future, some sham at self-determination?

But that’s all it is: a sham.

These things have costs and consequences. You can bottle things up for so long; you can pretend to be someone and something you aren’t and never will be; you can do things which are exhausting, even actively harmful in pursuit of “passing”…

But in the end you are still an autistic. An autistic who doesn’t know how to be an autistic, much less a person, never mind an autistic person. And that’s an important thing to know how to do.

How to be.

Who to be.

Anatomy Of A Meltdown

My brain likes to alternate between being made of swiss cheese (full of holes to fall in and through and down) and wax (for optimal melting). I have meltdowns a lot, in part because I use the term “melting” very broadly. Meltdowns, moments in which one’s brain melts, are a physical thing, though they look different moment-to-moment and person-to-person. But they all start out the same, with that pressure behind the skull and the feeling of your thoughts evaporating, your language freezing, your body retracting inward. It’s called shutdown, meltdown, violent meltdown, tantrum, outburst, dissociation, a million different things, but they all refer to the moment wherein your body or your brain, independent of your vote, decides that it simply cannot and will not continue to function in this charade that wasn’t really working anyways and…

Well.

Maybe you don’t bang your head, scream, throw things, leave. Sometimes I don’t. Sometimes I do. Sometimes I incur brain damage. Sometimes I just sit frozen for an hour.

Passing tends to come to a halt when this happens.

Meltdowns are of course a bit more complicated than all of this. What they are, to me, is a descent. A black hole opens up and draws you in, in, in. It’s empty and silent and ringing with screams and your intestines get itchy and try to crawl up out your throat, or maybe that is just the pressure everywhere building, building until it explodes out or locks you down.

The worst part about any of it, for me, is the silence.

The complete and utter silence. Silence so deep it fills up your ears. Silence like a scream.

And what’s worse is that, when I’m melting, as I enter or exit, I am silent too.

It’s why I type so frenetically. Why I get so upset when the words don’t mesh just right, or when they build up and won’t come out. That silence is to be avoided at all costs. When I’m silent, when I have no voice, I might as well not exist. I don’t, really. I’m not properly a person. I must speak, type, make my voice project over their heads and into someone’s ears.

Anatomy Of A Passing Person

Passing is….

Passing is…

Well, passing is difficult, first of all. It’s constant anxiety, calculation, cognition, because remember, those of us who pass are trying to be a person we aren’t, a member of a species that, should it know our true identity, expels us. The trick to passing, to passing well, is to make it look natural.

Passing means repressing, memorizing rules, sublimating, jumping through hoops, and turning tricks so we can get the human treatment. It means making it so that when you reveal your diagnosis to someone they “never would have guessed it”.

Passing is supposed to be a good thing. It’s convenient for the enabled and beneficial for the passing. The passing gets college, health care, respect, an audience to speak to, friends, work, a house, etc.

What I want to know is why do I have to pass in order to implicitly deserve any of these things?

What I want to know is since when did being treated like a human being have requirements?

When I am actively, deliberately passing as nonautistic, I am supporting power structures I benefit from. I am saying through my actions that it is okay to divide the human race along these lines, to treat people who fall outside of these lines like this, to save all the privilege and benefits and nice things for the safe normal people, etc. And you know, there are a million reasons to deliberately do this, some of them okay and a lot not, but in the end I am still supporting and ironically benefiting from a power structure designed to oppress and disable me.

But there is nuance to this. Silence is safety, of course, and being safe is important. And we aren’t all cut out to be radical, kyriarchy-smashing activists.

And what of those of us who pass without really trying all that hard?

There is a certain amount of ridiculousness to that idea, of course. Of course we have to try hard, speaking (speaking!) and socializing and reacting and parroting like the neurotypicals around us takes effort even (especially?) when we don’t realize it. Being a fake person, a half person, a glass girl or a ghost takes work. We tend to burn out eventually, no matter how brilliant a job of faking it we were doing. Or maybe we develop depression, anxiety, dissociation secondary to our autism as a result of this facade? Perhaps we take an increasingly upped litany of pills to cope. At the very least, we spend so much time learning how to be an acceptable human being that we forget, or never learn, how to be an autistic one.

Or to question why the one isn’t the same as the other.

Anatomy Of A Monster

And what none of us passers want to talk about is what our passing does to those who can’t. Passing is necessitated because without it, we would be stuck being a Scary Disabled Person and everybody knows how well their lives are allowed to go. There is a pervasive, fundamental belief that disabled people are monsters, or else possessed by monsters. That disability is monstrous, and disabled people, by implication are either victims or monsters ourselves. And therefore any and all talk of accessibility, universal design, human rights, equality, self-determination, alternative modes of communication, interdependence, what it means to be human and in a communication, what needs are and what it is to have them, etc etc etc goes out the window. Our bodies and lives and minds can be medicalized and politicized, but our voices are silenced and we get redefined as not quite, or not even close to, human.

Maybe it’s that view, of autism as monster and we as victims, which makes people recoil so much from the word, from the idea, from the concept of someone who will need 24/7 assistance and someone who won’t but has the same label. People don’t know how to treat victims, except by recoiling, as if bad luck is catching. People don’t know how to treat disabled people except as someone blend of horrific and pitiful, and by doing so we are dehumanized and re-conceived as something manageable and avoidable and yes, monstrous. Unhuman.

To be disabled is to be dehumanized. To pass is to be re-humanized as an acceptable, safe version of yourself that does not actually exist.

Well. Hi. My name is Julia, and I am autistic, and I am neither horrific nor pitiable nor monstrous, and if I am so what? And I pass. Mostly. For now.

That’s right. There’s a monster in your midst.

Anatomy Of An Autistic

So it looks as if I have two options. Pass and learn, perfect, the art of being a person I’m not. Or don’t, and let everyone else define me as some entwined version of monster and victim, pity and revulsion and terror.

But there’s actually a third option.

I can humanize myself. I can define myself. I can speak for myself, as myself.

I can find out who that self is.

I can lean what it is to be an autistic adult.

To be honest? I don’t have the faintest idea how to do that, and I don’t think you do either. It’s not as simple as flapping in public or typing on my laptop when speech is too much. All I know how to do is pass, and to interrupt that passing with moments of confusion, furious honesty, rawness and vulnerability. The emphasis in education and intervention is to make the child look nonautistic, not to prepare them for a future as an autistic adult. And there a million more posts in here, and I will go back to writing them eventually, but the point is that a whole generation of us have graduated, we can pass now, and we don’t know who we are or what to do.

The anatomy of an autistic is a lot of sketched out, smudged charcoal lines and open uncontained spaces. It’s a free space to develop. It’s something that will fill in as disability is humanized, normalized, as autism is accepted, as I am allowed to be who and what I am and to drop the poor facade that got me so far without risking losing it all.

The anatomy of an autistic is perhaps a scary thing. So few people have filled it in before, and even those fleshed-out illustrations have been crossed out by the dehumanizing, pitying, horrifying interpretations superimposed by others. But there’s a whole generation of us coming.

And I? I at least am going to work it out.

Hi, my name is Julia, and I’m autistic. It’s probably the best thing about me. Check your assumptions at the door.

We write to fill a silence here.