memo re: self advocate bloggers

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

Please, Please Believe Me

My attempt to start a letter-writing campaign on behalf of this teenage boy abused for being autistic appears to have failed, so I am trying a different tack. Below you will find the text of the letter I wrote for him. If you can, please help me disseminate this far and wide in the hopes that it will reach him, and anyone else in a similar position. Add your own kind words, experiences, and links to or quotes from disability pride resources. If this picks up enough steam, I would like to start a blog exclusively for this project.

Some resources to start:

You Get Proud by Practicing by Laura Hershey

Disability Shame Speaks by Laura Minges (make sure to follow the “next part!” links at the bottom: it’s a total of four pages and very, very good.)

Speech (without a title) by…me

The Letter:

Hi.

My name is Julia Bascom. You don’t know me, and I don’t know your name. I read an article about an assault you endured at your school though, and I want you to know that you are not alone.

I’m Autistic too. There are millions of us just like you who have been bullied and abused too. It’s wrong, it’s horrible, it’s unfair and unacceptable and none of us, especially you, deserved it. And you are not alone.

I was sexually abused by my classmates every day in Earth Science in ninth grade while my teacher stood two feet away. No one believed me. No one stopped it. Everyone laughed. But here’s what some very wise people said to me, later: just because no one believes you doesn’t mean it didn’t happen. Just because they laughed doesn’t mean it was funny. Just because they said you deserved it doesn’t mean you did.

Please, please believe me.

I’m sure you’ve been told it wasn’t a big deal. It was. It’s a huge deal. Don’t doubt that for a second. It was wrong. They are in the wrong. None of this, absolutely none of this, is your fault. They are the ones who need to work on their social skills. They are the ones who lack some basic empathy.

I can’t fix what happened to you, or to me, or to any of the people I know. It’s painful and humiliating and makes a person feel wrong and bad and powerless. Please trust me when I say that you are none of those things. You are not bad or broken. You are autistic, and you are also fine.

You deserve to be treated like a human being. You deserve kindness and respect and dignity. Someday, you will have those things.

I am fighting for that. My friends at the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/) are fighting for that. Even the President is on our side—he made a speech in March for a conference I attended that stressed that bullying and abuse are civil rights violations. We’re gonna win this. But right now, you just need to remember that you are fine. There is nothing wrong with you. All the bullies and abusers in the world can’t change that.

You can write back to me if you want to, or email me at juststimming@gmail.com. You absolutely don’t have to. But there is a whole community of us out there who want to help, and who are sickened and outraged every time this happens, and who will always support you and have your back.

You are not alone.

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 22^nd, 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 22^nd, we’ll say good-bye and try to memorize what his smile looked like. On Thursday, June 23^rd, 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.

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.

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.

Speech (without a title)

Hi. My name is Julia Bascom and I’ve had it easy.

I had it easy. What this means is that in fifth grade I was the smartest kid in the class. I also did a lot of hiding under my desk, and I talked funny and moved stiffly, so the other kids formed a club. It had only one rule, the golden rule: you couldn’t talk to Julia.

I changed schools at the end of the year. I kept breathing, but then, I had to: I had it easy.

No one beat me up. They didn’t have to—I did a good enough job of that on my own.

I have a friend. We’ll call him Martin. Martin is autistic, like I am, although he doesn’t identify that way. In fact, nothing would make him happier than being just like everyone else. See, Martin and I are different. We both know that being different, being autistic, being disabled, is dangerous. We’ve both been bullied. We’ve both had it easy. We’ve both seen what our alternatives are—be just like everyone else, or don’t be anything at all.

The difference between Martin and I is that I know without a shadow of a doubt that this is wrong. Martin doesn’t.

Martin and I became friends because we were both worried about each other. Martin was worried because apparently no one had ever taught me how to pass for normal. I was worried about Martin and the way he was quietly twisting himself away. I only got more worried when he tried to teach me how to blend in, how to pass, when he yelled at me senior year for looking like that, because don’t you know you’ll get hurt, don’t you know you’ll die, looking like that?

I have another friend. We’ll call her Maria. Maria has also had it easy. She’s autistic like me, but she is more visibly disabled than I am. What this means is that when we went to get ice cream two weeks ago no one would sit near us. What this means is that people think that because I help her count out the money to pay for her order I should be ordering for her. What this means is that Maria is not permitted to just neutrally exist in public. Getting ice cream becomes an act of war.

I work with middle school students with significant disabilities in a mostly self-contained classroom. Some of them have had it easy—no one will talk to them, the other kids run away when they see us coming, the teachers don’t want them in their classes, but no one gets beat up. Some of them have permanent brain injuries from abuse. Like Charlie. Charlie goes into murderous rages and has almost killed people–he’s the sweetest kid, but someone decided to beat him enough that he doesn’t feel the world is safe for him. He’s right.

Kaley hasn’t been to school in two months. The social workers are sent away from the house and the state is content to leave it at that. I don’t even know if she’s still alive, and no one seems interested in finding out. Roger, who can’t feel or control his tongue, was kicked out of his foster home and into an institutional placement three days before Christmas because he eats too messily. His ex-foster mother now visits him regularly and expects him to call her “mom” and say that he loves her.

She says she loves him too.

The hell of it is, the world agrees with her.

Here’s the thing about being disabled: it sucks. It’s horrible in a million different ways, and not a single one of those ways is because I can’t do this or because I have this impairment. That would be too easy. Instead, every single reason translates roughly to because people are awful. Sometimes, for a minute, for a day, for a week, I think I can forget that. I delude myself into thinking that the reason I can buy ice cream without five different hostile stares, can be allowed to work in a school, can be invited to the occasional party, is because people really are okay, and not just because I have learned how to fake being normal, being human well enough to avoid some sort of weird ability-based xenophobia.

I’m wrong, of course.

I just spent seven hours at a conference about bullying. Here’s the genius behind really good, really effective bullying: it turns the victim into their own worst bully. I told you I never got beat up for being autistic. I want you to take a good look at me. See my glasses? Those are because I damaged my eyes banging my head in tenth grade. See the spots on my arms? Those are from where I tried to gouge out my skin all through high school. See the scars on my face? Those are a little more recent—same idea though: self destruct. There are a million more I can’t show you—even the insides of my cheeks are scarred. I can’t tell you how many pairs of sheets I’ve had to throw away because I woke up covered in blood—I’d tried to pick myself apart while I was sleeping.

I didn’t do this because I was depressed, or scared, or because I hated myself. I didn’t want to hurt. But I knew I had to. When I hurt, I was in my place. And smacking my head against a wall for an hour a day was ultimately less painful than trying to convince myself, let alone everyone else, that I was maybe, possibly, worth something just the way I was.

The thing about bullies is that, although they never go away—I went to a different school with different kids after fifth grade, but there were always plenty of bullies to keep me remembering—they cannot be with you every second of every hour of every day. They can do hundreds of subtle and nasty things to you, and they will, but eventually they will need to pee or go home or at least sleep. So what they do is program you so that you can continue to bully yourself in their absence. I still hear the chanted retards in my head whenever I play with a strand of beads. I still believe, in my stomach and pulse, the way you know to run from a lion or don’t jump in the campfire, that I shouldn’t be here.

I don’t need someone yelling at me to sit down, shut up, stop flapping—I do these things automatically now. No one needs to tell me that I’m worthless—I get that. Message received, message believed, message drilled into my bones. No one has to threaten and force me into some version of myself that is less visibly disabled, less obviously autistic, less real and I guess less threatening—I’ve carved off all those edges of myself into a smooth facsimile of what I need to be.

(That’s the only reason I’ve ever “had it easy”. Because I could do that. Because I have, or had, the rare ability to pull myself apart and twist myself into some new shape when ordered. I’m lucky, in other words, that I don’t have any glue holding me together. Lucky to be broken, because then there is nothing left for someone else to break.)

What I’ve just described is “having it easy”, and it’s actually not easy at all. It’s complete and utter psychological and emotional warfare, and there is no winning for us—they, the bullies, set the rules and the terms and they always win. Millions of us live like this every day—we have it easy, we can’t complain, this isn’t something that can be solved with curb cuts or an act of legislation, and so we die the death of a thousand cuts.

I told you about Martin, earlier. Martin always beat me on quizzes in class, but there is one thing I know that he doesn’t. I know that this is bullshit.

Here’s the secret. There is, in fact, one way to beat the bullies. See, what they want is to work themselves out of a job, to have you doing their dirty work for them. They want you to beat yourself up. So the way you win is by stepping out of the game entirely. The way you win is by knowing, being absolutely and irrevocably and 100% positive, that they are wrong.

It’s the tiniest thing.

It’s almost impossibly hard. How do you discover the world’s best-kept secret: that despite what you’ve been hearing since you were two and your parents started dragging you to doctor after doctor and the other kids stopped playing with you that you are actually perfectly fine, just fine?

When you are disabled, you are sick in every sense of the word. Disgusting, scary, dangerous, broken, wrong. Lesser. I knew this, had it memorized and lived my life accordingly. But one day I met someone else who was sick. “You’re sick!” I protested when they insisted on acting like a human being.

“Yeah, I am.” they agreed. “So are you.”

And then one morning I woke up. I was still sick. And I was also fine.

I was fine.

There is no equivalent to a GSA for disabled kids. We have to pass it on like a secret. You’re okay. We’re okay. Everyone else is wrong. We have a right to be here too. We’re not just sick. We’re not in doctors’ offices all the time. We’re okay.

We need that support, need some sort of physical community. Passing it on like a rumor isn’t enough. The moment we realize that the hateful people who fill and control our lives are wrong is the moment when everything can finally start to change. That moment shouldn’t even have to happen—it should be something that we just always know.

Things won’t get better until then.

Good-bye. My name is Julia Bascom, and I am, always have been, and always will be, fine.

Thank you.