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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.

 

April 5, 2011 / Julia

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.

 

 

 

 

 

April 5, 2011 / Julia

The Obsessive Joy Of Autism

I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully. I can explain, bemoan, and wish away a lot of things about me and my autism: my troubles finding the right words to say what I really mean, my social processing lag and limits, my rubbery facial expressions, my anxiety, my sensory system’s dysfunctions, my brain’s tendency to get stuck in physical self-destruct mode and land me in the ER. I can complain about the suckiness of being socialized and educated as an autistic and as an outsider, about lack of supports and understanding and always needing to educate.

One of the things about autism is that a lot of things can make you terribly unhappy while barely affecting others. A lot of things are harder.

But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap. You get to perseverate. You get to have just about the coolest obsessions. (Mine are: sudoku and Glee. I am not ashamed.)

Now, maybe you do not understand. Because “obsession” and even “perseveration” have specific dictionary and colloquial meanings which everyone uses and understands and which do not even come CLOSE to describing my relationship with whatever I’m obsessing on now. It’s not just that I am sitting in my room and my heart is racing and all I can think about is Glee and all I want to do is read about it and talk about it and never go to sleep because that would take time away from this and that has been my life for the past few days. It’s not just that I am doing sudokus in my head or that I find ways to talk about either numbers or Glee in any conversation, including ones about needing to give a student a sensory break so he’ll stop screaming and throwing things.

(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)

It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”.

It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear.

It is beautiful. It is perfect.

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

It takes a million different forms. A boy pacing by himself, flapping and humming and laughing. An “interest” or obsessions that is “age appropriate”—or maybe one that is not. A shake of the fingers in front of the eyes, a monologue, an echolaliated phrase. All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

This is about the obsessive joy of autism. So I guess, if I’m trying to explain what an obsession (and, by necessity, obsessive joy) means to me as an autistic person, I can bring it back to the tired old image of a little professor cornering an unsuspecting passerby and lecturing them for half an hour. All too often this encounter is viewed through the terrified eyes of the unwillingly captive audience. I’d like to invite you to see through the eyes of the lecturer, who is not so much determined to force their knowledge into you as they are opened to a flood of joy which they cannot contain.

And why would you want to contain something like that?

 

February 11, 2011 / Amanda Forest Vivian

can’t imagine, can’t judge?

(I added another fallacy by the way, it is the Contest Fallacy and it’s about halfway down the page. Kind of a messy one.)

Adelaide, actually I didn’t understand what line you were referring to with the terrible vs. unimaginable thing. I’ve been thinking about it more.
I think the difference between terrible and unimaginable is huge.

on the one hand, you can’t completely imagine anything if it isn’t your experience–and everyone should accept that that’s true.

for example, I grew up in a rich family. so if someone’s from a working-class family I’m obviously going to be like, I can’t speak from their experience and I’m going to give more weight to their opinions than mine re: class issues because I’m surely unaware of a lot of stuff. same for other oppressed groups that I don’t belong to. and I guess this is one kind of way of saying, “I can’t imagine your experience–not necessarily because I think it’s a terrible experience, but just, no matter what it is, because it’s not mine. so I’m not going to behave like an authority”. But there are limits to this; if I strongly strongly disagree with someone’s actions/beliefs and they attribute their actions/beliefs to an oppressed identity or a terrible experience that I don’t have, and I really think about it but I just think what they did/think is not ethical at all…well, I’m still going to think it’s not ethical.

that’s not totally related but I feel like the response of “I can’t imagine your experience so I can’t judge you” is in SOME WAYS a good response to have, but I feel like when it comes to parents of disabled children, it gets way overdone. the raising/having of a disabled child is seen as so unimaginably terrible that other people are put in the position of feeling like they’re absolutely not ever, ever allowed to judge parents. of course we see this when parents of disabled children kill or seriously abuse their children or put their children in facilities where they are given shocks or take out their kids’ uteruses. anyone who criticizes these parents is constantly told, “you don’t understand the emotional pain/the financial pressure/the physical strain/the lack of free time these parents have.”

of course I don’t understand personally, because I’m not a parent. I try to be as aware as I can. I try to read blogs/watch movies/etc. about people with severe disabilities and their families so that I don’t just project my own experience of disability onto other people and families. I work with people with severe disabilities (I don’t do this to improve my thinking or anything, but just because it’s the type of work I enjoy the most and am good at–but it helps my thinking, too). I try to think about how all those things could affect a parent–and I also know that since I am not a parent, I can’t really imagine how it is.

at the same time, I think I can imagine enough to say: there are certain things that no parent should ever do to their kid. It’s not okay. I don’t believe there is some secret feeling that I can’t conceive of, that I would experience if I had a disabled child, and in this feeling would be the reason it is morally acceptable for me to abuse or kill my kid.

so, yes, I can’t imagine other people’s experiences–but not to an extent where I am going to say, oh, I think certain experiences are so terrible that I’m not even going to begin to think about them, I’m just going to completely detach and not have any opinions about what it’s ethical for that person to do.

February 9, 2011 / Amanda Forest Vivian

Some common fallacies and rebuttals

A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”

Fallacies of relevance can be very difficult to respond to for several reasons.

  1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
  2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
  3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
  4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.

I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?

In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.

The Harder Fallacy

JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.

Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”

(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad'” rule consistently, and only apply it to stigmatized groups.)

The Uncomfortable Fallacy

MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.

Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.

(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)

The Shocking Behavior Fallacy

MARY: My nephew Ralph has autism and it’s really sad. He insists on watching Thomas the Tank Engine every day, and he’s sixteen.
JOHN: Why is that sad? There’s nothing inherently wrong with an older person liking things that are aimed at kids. I feel like in our society, people label a lot of things as problems that aren’t actually problems.
MARY: That’s really insensitive. Ralph bites himself so badly that he has to go to the hospital.

Rebuttal:
John didn’t say that it’s not a problem to seriously hurt yourself, nor did he say that Ralph doesn’t have any problems. But Mary reacted as though he did say that, and now John is knocked off balance. He wonders, did he say that? How can he explain that that has nothing to do with what he was saying? Is there anything he can say now to avoid giving the impression that he thinks self-injury is okay?
In the Shocking Behavior Fallacy, you can use a shocking behavior to excuse something unrelated that you did to or said about the person who has the behavior. The fallacy functions by changing a very specific statement to a general one. Mary changed John’s specific statement–watching Thomas the Tank Engine is okay–to a very general statement–everything Ralph does is okay. Now she can prove John wrong by giving an example of something Ralph does that is not okay.

(Fun fact: This is actually one of the most dangerous fallacies in use. By equating one thing a person does with everything that person does, it creates a class of people about whose treatment no one is allowed to complain. Let’s change the example a little and say that Mary is a staff person working in an institution, and every time she sees Ralph trying to watch Thomas the Tank Engine she takes points away from him, which means that he doesn’t get to go on day trips. John thinks that Mary is micromanaging Ralph’s choices in an abusive way. Mary responds that Ralph has to be monitored closely and dealt with harshly because his problems are so severe; he bites himself, remember?
Professionals can fall into an inverse of the Shocking Behavior Fallacy, where instead of going from specific to general to shocking behavior, they go from shocking behavior to general to specific. Ralph has a really big problem, but instead of thinking of it as one problem, Mary starts thinking of it as who Ralph is. So whenever Mary sees Ralph doing something she doesn’t agree with, she responds as if he is biting himself. The results can be horrifying.)

The Suddenly Specific Definition Fallacy

JOHN: It bothers me that doctors tell pregnant women that people with Down Syndrome can’t count change. They advise women to abort people like me, when they don’t even know what someone with Down Syndrome can do.
MARY: But most people with Down Syndrome aren’t like you. Just think, it would be so hard to have a kid who could never live on their own.

Rebuttal:
In this fallacy, you tell a person with a disability that they can’t use their feelings or experiences to make a point about their disability, because you just made a new, more specific definition of the group of people being talked about–a definition which no longer includes them. Mary has transformed John from someone who had authority on the subject, due to his experience, to someone whose experiences aren’t valid because he’s an exception.
Let’s briefly accept Mary’s new specific definition–a person who can never live on their own. It’s true, John could have some opinions about whether it’s wrong to abort such a person, but he can’t speak as someone from that particular group. But guess what? The prenatal test doesn’t measure whether someone could live on their own, it just measures whether they have Down Syndrome. If a fetus exactly like John is diagnosed with Down Syndrome, it doesn’t get a break because it’s John. Its mother’s doctor is just as likely to present the diagnosis as bad news, encourage an abortion, and list a bunch of things the child won’t be able to do that may or may not be true of the John-fetus in particular, or people with Down Syndrome in general. Being an exception gets the John-fetus absolutely nothing.
The reason the Suddenly Specific Definition Fallacy is a fallacy is because of its suddenness. Stuff goes along, people with a particular disability are getting discriminated against, mild and severe alike. Everyone’s welcome in the stigmatized group. Then someone says, “Hey, I have this disability and all these things you’re saying about my disability aren’t true.” Bam! Apply the Suddenly Specific Definition Fallacy and remove the person’s authority (they can keep the stigma).

(Fun fact: I’m sorry if the example comes off as melodramatic, but I’ve read a lot about this stuff and John is not exaggerating.)

The Contest Fallacy

JOHN: It makes me upset when my parents always say that they wish I wasn’t disabled.
MARY: But that’s totally legit. It limits what you can do with your life and it means things are going to be harder for you.
JOHN: I mean, I get that, but how would you feel if your parents were always saying they wish you weren’t a woman because things are harder for women?
MARY: That’s so stupid, John. Being a woman and being disabled aren’t the same thing!

or

JOHN: I’m not saying that parents don’t have a right to say if they’re upset about their kids being autistic, but, like…it’s basically like if every time there was something on TV or in a magazine about gay people, it was gay people’s parents saying that they wish their kid could be straight and how depressed they are.
MARY: Can’t you explain how you feel without doing Oppression Olympics? People try to make their kids straight all the time. Haven’t you ever heard of Love in Action?

Rebuttal:
In both examples, John tried to explain how he feels about something as a disabled person by replacing disabled people with a group that Mary belongs to; but Mary either turned it into a contest between the two groups, or thought that John was trying to have a contest.
The first example is easier to take apart because it’s obvious how much of a subject change there is from John’s analogy to Mary’s response. John was trying to explain that your parents can imagine an easy life for you to an extent that makes your real life much harder. Mary responded as if John was saying that because women and disabled people both have harder lives, they are exactly the same.
The second example is more tricky to discuss because it involves an accusation of Oppression Olympics. Oppression Olympics basically means that you say that your minority group has it worse than another minority group. Sometimes people do it intentionally in a conflict, but other people just have a lot of trouble understanding that the problems of the group they’re advocating for are not worse than the problems of everyone else in the world. Hence the astonishingly self-centered, and astonishingly common, declaration that whatever prejudice you care about it is “the last acceptable prejudice.”
Basically, Oppression Olympics is really annoying. You don’t want to do it. But was John doing it? Let’s think back.
Did John say that gay people aren’t oppressed?
Did he say that people with autism are more oppressed than gay people?
Did he say that gay people’s parents never try to make them straight?
No, he didn’t say any of those things.
He did state that the majority of media about gay people is not about parents wanting to cure their gay kids, which is true. Such a statement could be used in Oppression Olympics, if John was trying to argue that he is more oppressed than Mary–but in fact, rather than trying to “win” by convincing her that their oppressions are on different levels, he was trying to explain his experience in a way that would be accessible to her through her experience. It’s perfectly likely that his intentions were to connect with her, not to be malicious and deny her experience as a gay person.
I do think this can be a little dodgy, and the best way to make this kind of analogy is by comparing two groups that you belong to. However, not everyone can do this; and while John made a risky comparison, he was not wrong.

Undisabling Fallacies

Undisabling is when someone is speaking as a person with a disability, and you convince them that they don’t have a right to do that. I’m not going to go over these fallacies with a fine-toothed comb because a)there are tons of them, and b)they often contain elements of the Harder Fallacy, the Shocking Behavior Fallacy, and the Suddenly Specific Definition Fallacy–so they should be pretty easy to figure out.
I should probably mention that a lot of the other fallacies are pretty innocent and are often used by people who don’t have these conversations very much and aren’t really thinking about what they’re saying. Undisabling fallacies tend to be used by people who are very very involved in these issues, and are really vicious.

  1. Mary tries to convince John that his disability either isn’t real, or isn’t severe enough for him to have an opinion. She does this by trying to make him feel guilty by telling him something bad that happened to someone else with the same disability. For example, if John has muscular dystrophy, Mary could tell him about someone she knew with muscular dystrophy who died when they were very young. John is set up as seeming to claim a bad experience that he didn’t have. He feels bad. This is the Suddenly Specific Definition Fallacy, and is closely related to the Shocking Behavior Fallacy, although it’s not an exact application.
  2. John says something that goes against disability being the Super Sad Worst Thing–probably it was about Thomas the Tank Engine, knowing him. Mary takes this to mean that John is happy and doesn’t see his disability as a problem at all; therefore, she says, his disability must not be very severe; therefore he doesn’t understand. This is both the Harder Fallacy and the Suddenly Specific Definition Fallacy.
  3. A really souped-up version of #1 where Mary tries to pick a behavior that she thinks will really gross John out, to the point that he’ll get super confused and never say anything about disability ever. I’ve seen some people in the Autistic community use the phrase “You don’t smear feces!” as an inside joke because it is so consistently used in this type of fallacy.
  4. John is being insensitive to Mary’s very negative feelings about disability by stating his own feelings and opinions, which of course she takes as being very positive because they are not like hers. Kind of Harder Fallacy-ish. Also kind of ties into what I’m about to describe.

Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.

  1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
  2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
  3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
  4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
  5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.
  6. I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will.

Is everyone trying to trick you all the time?

(John tries to self-advocate.)
(Everyone he talks to uses a bunch of fallacies.)
(At first John is overwhelmed by the fallacies, but later he realizes they weren’t valid arguments.)
JOHN: Everyone is trying to trick me all the time.

Rebuttal:
Everyone is not trying to trick you all the time. Sometimes people think they’re being logical when they’re not.
I think people can have a very intense learned belief that disability is unimaginably terrible (which, by the way, feeds into the idea that disabled people are “other,” and don’t have their own points of view). This belief can make it hard for someone to listen to what you are actually saying. For example, you might be saying that most disabled people aren’t incredibly miserable people who make everyone else miserable. To someone who believes that disability is unimaginably terrible, what you’re saying is so shocking that they might perceive it as, “Being disabled, or being around a disabled person, is incredibly fun all the time.” Then they respond to the thing they thought you said.
This is an annoying and depressing phenomenon, of course, but it does mean that the use of fallacies is not always malicious even though it sucks.
Did I miss anything?

February 6, 2011 / Amanda Forest Vivian

“more normal = progress”

(I am kind of into the idea of making this post longer and longer as people add more examples. You’re invited to contact me or comment with examples, or corrections and supplements to existing examples.)

It is pretty common for professionals and laypeople to think that “progress” (i.e. becoming less impaired) for someone with a disability means that the person is less obviously disabled or ceases a particular behavior that was unusual or was associated with their disability. Sometimes when I write about this on my blog I call it passing as ethics because of the way it can be applied to autism. The idea is that if you act more like other people, or your behavior pleases more people, that’s the same as being more morally good. But actually, the basic structure of this assumption (more normal = progress) is applied to many other accomplishments besides social ones, and many other disabilities besides autism.

I want to examine this assumption and provide examples of how it affects people with different disabilities, because I think if you only see a narrow piece of the whole phenomenon it’s easier to believe that the mn=p assumption is correct. My hope is that by showing how broad the assumption is, and how obviously ridiculous it is in some situations, I can convince you that applications of mn=p are easy to accept because the assumption is a cultural reflex, not because it is actually true in most cases.

(I’m talking about some broader categories while also including some specific disabilities that are included in the broader categories; for example, there’s mn=p as applied to mobility impairments and developmental disabilities, but mn=p as applied to cerebral palsy can be very distinct from general developmental disability mn=p and mobility impairment mn=p.)

mn=p + deafness

Some people thought, and think, that deaf and hard-of-hearing people should communicate by lipreading and speaking (oralism) instead of by using sign language (manualism). Theoretically, this sort of makes sense because the majority of people communicate only by speaking and listening, and don’t know sign language; so it seems like oralism would give deaf people the ability to communicate with more people.

However, in practice, oralism doesn’t work for a lot of people. If you don’t have any hearing, you can’t understand the majority of things people are saying just from lipreading. Your speech is also likely to be difficult to understand. Even if someone is successful or semi-successful at speaking and lipreading, it still may be really really difficult and exhausting for them to communicate. For a lot of deaf people, the drawbacks of having speech and lipreading be their primary means of communication outweigh the benefits; or there may not be that many benefits because they may not be that good at it. And because of Deaf culture, communicating primarily in sign isn’t something that dooms a person to a life of isolation.

For a long time lipreading and speaking was thought to be the best way for deaf people to communicate. A lot of hearing parents and professionals still encourage it from deaf people. As explained, there are obvious reasons this was and is wrong.

Source: basically I learned all of this from watching an eighties movie, which is embarrassing. A blog would be a nice source if you can think of a good one. I also have a book downstairs that talks about Deaf culture and includes some of this history, but as I said it’s downstairs and I’m up here. I remembered this comment also.

mn=p + mobility impairment

Dave Hingsburger, who uses a wheelchair, recently made a post called Don Your Thinking Caps describing something that happened to him. He was faced with a sidewalk that wasn’t wheelchair-accessible, and ended up having to walk, bracing himself on his partner Joe. An acquaintance saw him walking and excitedly said, “Good for you! I knew you’d get out of that chair one day.”

This is an obvious example of mn=p because Dave obviously wasn’t cured (since he needed support to walk) and this type of walking wasn’t better than using a wheelchair (since he needed someone else’s help, and was probably physically uncomfortable), but Dave’s acquaintance still perceived what was happening as “good” and better than his usual situation.

mn=p + cerebral palsy

A lot of what caused me to start thinking about the universalism of mn=p was the fact that I happened to come across and read Playing Cards at the Boston Children’s Hospital by Lisa Blumberg, and then started reading Norman Kunc’s writing in the same week. They both have cerebral palsy and the pieces I read showed how they experienced mn=p at the hands of professionals.

In the interview The Stairs Don’t Go Anywhere, Kunc talks about how he was affected as a child and teenager by the fact that he attended a segregated school and was given intense physical and occupational therapy. “The more I could reduce or minimize my disability the better off I would be…I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job–everything could be mine. All I had to do was overcome my disability…I wanted all those things…so I ended up declaring war on my own body.”

Kunc obsessed over trying to make the way he moved and spoke seem more normal, until college, when one of his friends asked him why. Kunc then realized, “I had the right to be disabled.”

This is a quote that really resonates with me. A lot of non-disabled people, including professionals, seem to think that disabled people would like to be told we’re not really disabled or that we’re less disabled that we are. I can’t speak for everyone, but for me nothing could be less true. If someone overestimates my abilities, that doesn’t keep me from knowing what my actual abilities are; it just means that I feel like the person won’t accept me unless I pretend to perform above my ability level. So “being disabled” actually does feel like a luxury, something you can be forbidden to do even when you really really want to.

I can see an argument that mn=p doesn’t actually apply to Kunc’s experiences. He may have experienced progress; he doesn’t say whether his physical therapy improved mobility and decreased pain. Instead, he argues that the most important parts of life aren’t about the severity of your disability, but your happiness and independence. So Kunc’s story could be read as showing, instead of “more normal doesn’t always equal progress,” “progress (if progress means that someone becomes less impaired) is not always as important as other things, like self-esteem and relationships, and shouldn’t be valued above those things.” I think this second point is also true and is really important, especially because the obsession with progress has a very negative effect on the lives of people whose impairments remain static; they’re seen as people for whom nothing can be done.

But that’s not exactly what I’m discussing here. Fair enough. Blumberg’s story is a much more cut-and-dry and mostly focuses on her experiences as a college student when she was pressured into getting muscle surgery on her legs. Prior to the surgery, Blumberg experienced no pain and got around at a satisfactory speed, although one physical therapist criticized her for not caring about how her gait looked: “You don’t concentrate. You just go–like you think you walk normally or something.” (Blumberg told her mom, “They exalt form over substance.” Exactly.)

That same therapist, and a doctor Blumberg calls Pan, kept trying to convince her and her mother that she should get surgery. Blumberg and her mom were told that the surgery would “give [her] a more normal walk, a better appearance,” and when they said they didn’t care about that, the doctor started telling her that her hips would dislocate within ten years if she didn’t get the surgery. He ended up lying to her and her mother about the dangers of refusing the surgery–which, when she agreed to it, caused her intense pain and negatively affected her mobility. As a much older adult, Blumberg found out for sure that the surgery had been unnecessary and was even considered brutal.

This is an obvious bad application of mn=p. Blumberg saw herself as being at an acceptable level of ability; the only treatment she wanted was physical therapy to maintain that level or raise it if possible. The doctor and therapist saw her as someone who needed to be fixed, apparently in part because the way she walked made her disability obvious; their attempt to make her more normal actually increased her impairment and was the opposite of progress.

mn=p + developmental disabilities

In his post Just Stop It, Dave Hingsburger writes about a woman with an intellectual disability whose staff took a stuffed animal away from her because having a stuffed animal is associated with childhood and therefore is a stereotypically disabled behavior for an adult to have. This is obviously not progress because it didn’t lessen the woman’s impairment, and probably made her life worse by taking away something she loved.

I can think of lots of similar “mental age”-related examples that I’ve either read or seen. I remember an instance of anti-autism rhetoric that involved a woman complaining because her son wanted to dress up as Mickey Mouse while other kids his age were dressing up as Lord of the Rings characters. This was obviously intended as an example of how impaired the kid was but, like enjoying stuffed animals as an adult, it is an example of difference, not impairment.

You could argue that this boy was impaired in his ability to realize what other kids were doing and copy it, but this wasn’t stated and I think it is disingenuous to pretend that kids are always copying each other–it happens, but also, non-disabled people may just naturally resemble each other and if a disabled kid is different that doesn’t necessarily mean they understand trends less than non-disabled kids. Also, people can choose to deviate from the norm, knowing that they are doing so.

I can kind of understand this application of mn=p more than other kinds, because so much evil has come out of the idea that people with disabilities are eternal children. But being an adult can include the decision to enjoy things that are stereotypically enjoyed by children, and in fact, being forced to “act like an adult” is a pretty clear indication that you’re being treated like a child.

mn=p + autism spectrum disabilities

First, a stark example of mn=p as applied to autism, which I’d also classify as passing as ethics, from Zoe’s post On Lea’s Terms; a staff person at a place Zoe volunteered told her that a non-disabled child was there to serve as a role model for children with autism, even though the non-disabled child behaved in a rude way.

Since mn=p as applied to autism is kind of my specialty and the reason I started blogging two years ago, I hope it isn’t obnoxious for me to just link to my first pieces about it (for the record, I don’t agree with some of the language I used back then). I think mn=p often happens to us quite intensely, so people write about it a lot and I certainly don’t mean to imply that my stuff is the only stuff covering mn=p + autism. Nothing could be further from the truth; I’m lazy, is all.

I became passionately interested in anti-ableism because I interned at a school for kids with autism where many of the behavior goals for the students were focused on normalization. It was obvious to me, a young adult with an autism spectrum disability, that the achievement of some of these goals would not increase the quality of life or social success of the students. I had learned enough about passing in real life that I had a problem with the professionals who automatically assumed passing could be taught or that passing equaled progress.

I wrote Functional Stimming in response to the school’s unquestioned assumption that stimming (behaviors common among developmentally disabled people, like vocalizing, flapping hands, and rocking back and forth) was a bad thing. I discussed how stimming could improve someone’s functioning, and how my functioning had been negatively affected by trying to repress stimming. I also wrote Pulling Rank and Involuntary Assimilation in which I described the way the school gave status to people based on how normal they looked and acted, and explored the benefits and drawbacks of passing for people with ASD. One thing I mentioned was that passing could actually limit a person’s ability to be successful socially, because of the emotional drain on the person, and the fact that their relationships would be compromised if other people weren’t aware of an important fact about them (their disability). I concluded that the obsession with normalcy came out of a society that didn’t value disabled people, rather than normalcy being innately better for us.

mn=p + multiple severe disabilities

(This particular example really disturbed the hell out of me so if you are triggered by discussions of restraints I would recommend you skip to the final section, mn=p + anything.)

The blog Single Dad, Disabled Daughter is written by a guy whose teenage daughter, Pearlsky, has severe physical and intellectual disabilities–although the latter is hard to measure because she has never been able to communicate in a measurable way. Because Pearlsky has so little control over her life, Single Dad was confused that her school staff’s main goal for her was to get her to stop putting her fingers in her mouth. Presumably they disapproved of this because it wasn’t good for her skin, as well as because of the stimminess (that is, disabledness) of the habit.

Single Dad wrote Pearlsky’s teacher an email trying to explain why he didn’t have a problem with the stim (I’m editing it for length but it’s a fantastic email; I wish more parents had his value set.)

“It appeared that there was some agreement that Pearlsky can control this. I believe you and maybe [the vision therapist] mentioned that you can tell her to stop or distract her, or whatever, and that she can stop doing it, at least for a time…If, in fact, it has a voluntary component, then this is the singular action that we have seen that Pearlsky can repeatedly and wantingly (?) do…I am just saying, if this is the only thing she controls, and she appears comforted doing it, is it really something to concentrate on taking away from her? And, as a last thought, if she has any control over this, then have we not found a purposeful action that maybe we can leverage off of for some form of communication?”

As far as I can tell, the staff didn’t answer his email, and he later found out that they attempted to use restraints to stop the stim (disturbing image warning). This is yet another example of “progress” that is the opposite of progress. Instead of trying to use Pearlsky’s habit to motivate her, or accepting it as something that doesn’t relate to progress but is valuable because it makes her happy, her staff are trying to take away something she likes, and using restraints that cause welts on her arms. This is a bad application of mn=p because it involves causing someone pain for no reason.

mn=p + anything

I wanted to put this example at the end of the post, even though it was actually the thing that originally spurred me to write the post. I think that when mn=p is applied to people with very severe disabilities, that’s when it becomes most clear how completely empty and stupid an equation it is. Like, when it comes to people with more mild disabilities, maybe there are some underlying ideas like:

1. If they get a little more normal, they might look totally normal and won’t face stigma for being disabled.
2. If they get a little more normal, they might actually BE normal and the problems associated with their disability will go away.

And I feel like when #1 happens it can lead to a very low quality of life; and #2 just is very rare or impossible depending on the disability. But I can buy that those things might occasionally happen or that, even if they don’t, the person making the mn=p assumption genuinely believes they might happen. I don’t agree that those are reasonable goals, but they are goals.

But when it gets down to this kind of situation, where someone is severely and visibly disabled, and professionals are trying to take away something that makes them happy because…well, for actually no apparent reason, not even a bad reason? Just no reason at all?

This is the core of mn=p, where it becomes obvious how rotten it is.

It is so rotten that people stop seeing it as even a choice or an opinion or a feeling, and just see it as a fact of nature. If you step off the edge of a cliff, you fall, and if you get more normal, that is progress. Because of the unobtrusive rottenness of mn=p, it just becomes an idea that people follow without even realizing they’re making a decision to follow it. Lots of people follow mn=p who are not cruel people, but just have forgotten that there is anything else.

***
A note on the developmental disabilities section, as I feel it would be biased not to address this: I have read here that the mother who made the Mickey Mouse statement disliked having that particular statement quoted, and said that other quotes would have better represented the “extent of [her children’s] disabilities.” So she admits that an unusual Halloween costume isn’t a sign of serious impairment.

However, I can’t help but wonder why she would use that as an example at all even if it was meant to be a minor example. I think that sometimes when people are saying less normal = impairment, and get called out on what they’re saying, they will try to to defend themselves by pointing out that the disabled person they’re talking about actually is impaired in ways unrelated to normalcy. Of course, this isn’t relevant to the discussion, and is a fallacy resembling the harder fallacy, which I’ve discussed before. (I could go on about this, but I don’t want to hijack the post.)

Also I’m truly sorry to anyone who likes math a lot; to be honest I like it too but I wasn’t really thinking when I started writing this post and I obviously get that it’s (mn=p)deafness and so on, and maybe I’ll fix it later.

February 6, 2011 / Julia

Grabbers

It’s a grabbers vs. flappers warzone.

On the one side are the flappers. We wave and twist our hands in front of our faces or slap them against our chests. Our heads punctuate our moods and the music against the wall. Our knees don’t bend as we walk on our toes, our fingers pick at cuticles or scratch patterns against our forearms and cheeks, and we’d rather watch spinning pinwheels than drown in another person’s eyes.

(Our joy is own own, and we communicate it differently, perhaps holding privately onto it, or pouring it out into another person. But soon we learn from the grabbers that our joy should be our shame, our movements not our own, and so we withdraw.)

What else is there to do when you are surrounded by grabbing hands but shrink in on yourself?

The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them—and that’s really the goal, being just like everyone else, and so there is not even a second of hesitation in their eyes when they slap our hands down onto the table with a shriek of “quiet hands”.

The hands are everywhere.

They’re at our chins. “Look at me, with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

Please let me go!

But protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self. The most basic human thing is just existing in space, and you quickly realize that you do even this wrong. Is it that you take up too much space, or just that you do it too differently, moving in an entirely alien way and triggering some sort of dormant xenophobia?

In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine. And you learn that a relationship, if you can call it that, always has two roles, a flapper and a grabber, and you will always be grabbed, and never be permitted to grab back.