Dangerous Assumptions

There is this thing that happens sometimes.

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

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

They are so, so excited.

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

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

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

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

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

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

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

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

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

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

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

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

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

People who used words like we.

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

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

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

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

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

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

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

And you made me think it was my fault.

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

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

And it kills you.

They kill you.

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

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

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

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

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

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

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

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

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

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

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

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

And, just in case you should care…

Yeah. I noticed.

Truth Is

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

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

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

I want you to know that I understand.

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

I need you to know that I understand.

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

I want a lot of things.

It’s not a bad thing, to want things.

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

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

I’ll wait.

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

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

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

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

Every single one of those things I want?

Have nothing to do with being autistic.

Really. Not a single, solitary one.

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

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

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

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

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

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

What if being cured didn’t fix those things?

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

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

Then I’m really not safe at all.

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

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

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

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

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

your dreams will be reduced down to breathing, and you will be grateful

The thing about not-being-a-person is:

They will say those people and the price of being a person is to nod and agree that yes, those people aren’t people at all.

They will have no idea who they are talking to.

You yourself will start to forget, too.

They will say a million small things that sow the seeds for violence done against you, and you will smile and let them.

You will do math, constantly.

How much do I want to be a person today? How much do I want this project to succeed? How much honesty can I afford? How much dishonesty will kill me? What is the cost of coming out? Is there a way to delay, soften, transmute? How long can I survive as half a person?

Your dreams will be reduced down to breathing.

And you will be grateful.

And no one else will know. And so it won’t be real.

You will become an expert at folding away pieces of yourself, quietly and automatically and with perfect obedience.

And you will forget that, forget all of it, forget yourself, and then come back to yourself violently as someone smiles and talks, academically or hatefully and there’s no deciding which is worse, about those people.

And you will remember that you are not a person. And you will have to decide, all over again, how much longer you can take that.

“Congratulations on your human decency”

The correct reaction to hearing about systematic injustices or oppression experienced by an autistic person is not to turn to the autistic person explaining this and exclaim: “but I would never!”

That this response is in any way considered a legitimate one will never cease to baffle me.

I’m thrilled that you aren’t revolted by the idea of an autistic person having sex. I am really, genuinely, honestly excited. You know why?

Because you are rare. You’re like a unicorn. If everyone felt like you, my friend would be permitted to be alone in another room with her boyfriend of seven years.

But…oh. She’s not.

She’s turning twenty one, and she’s never been told what “sex” is.

She’s also not an isolated example. She belongs to a specific group of people–autistic, intellectually disabled, in a supervised living situation–who are routinely and almost by default denied agency over her sexuality. Other groups experience the same abuse in different ways.

You think that’s wrong? Congratulations. Then I’m probably not writing about you.

I am honestly overjoyed when a parent or an educator tells me that they don’t practice quiet hands. I am also frustrated past the point of tears, because you are not enough. You are one person refraining from abuse in a culture where these practices are expected. Your actions have an impact, yes–they also do not negate the reality I and the autistic community have grown up in. A spot of light in the darkness is invaluable, but it’s just that–a small spot of light. I’m not writing about the spots–I am writing about the overwhelming, consuming darkness.

I really don’t understand how we’ve gotten to a point where some sort of acknowledgement is expected for the teachers, professionals, and parents, the service providers and the allies, who manage to show some basic human decency. Such a state of affairs is an insult to everyone involved.

If I describe a broader, troubling trend in society that has a profoundly negative impact on me and my community, a reply of “but surely I am not a part of this trend!” is nonsensical. It says absolutely nothing about anything I described. You aren’t a part of the problem? Then what I’ve said doesn’t apply to you. Why are you bringing yourself up? It’s as if you commented that the sky is particularly blue today, and I mentioned that in Australia it’s midnight. They’re both technically true statements, but mine really isn’t conducive to a discussion of the weather here and now.

In fact, if I make a habit of such statements, I’ll probably be seen as needing some speech therapy or behavioral intervention.

You will probably be seen as a very, very patient ally.

It’s an absurd situation. It’s like a straight parent wanting praise for not kicking out their LGBT+ child, a man expecting me to finish an essay about rape with a p.s. most men aren’t rapists, it’s like me as a white person expecting a Japanese friend to finish a recounting of racial violence with a quick oh but I know you’re not like that, Julia.

Guess what! I don’t get points for meeting the bare minimum requirement of ethical human behavior! No one does! It’s the minimum. It’s what the default is supposed to be. We should be able to take it for granted.

Yet in discussions about ableism and autism, I am repeatedly confronted by this problem. When I refuse to qualify my statements with but of course some parents would never kill their child, or not that life is always perfectly easy for neurotypicals either, I am told I am being too blunt, angry, or antagonistic. Probably, it is theorized, this is because I am autistic. I must have difficulty understanding that my experiences aren’t universal, or that other people have feelings and a right to different opinions.

No, actually. Speaking–well, typing–truth plainly and as concisely and directly as I can is not the same as harshness. It probably feels unpleasant when read by a person in a position of immense privilege. I am frankly more concerned with the systematic injustices I see all around me.

I mention privilege. Privilege is a word that has a lot of meaning. I’ve been told I’m privileged for being able to articulate what has been done to me.

I really cannot think of anyone luckier.

Privilege is actually very different from luck. Privilege is a lot like water, to paraphrase Amanda Baggs. It’s been described as “not having to know” or “being able to forget”–not having to know that nothing will change for you unless they leave a bruise where someone can see, being able to forget that someone was institutionalized. A useful description here, however, is simply “used to taking up space.” People in positions of privilege–and enabled people are by definition in a place of immense privilege over disabled people–are used to taking up a lot of space. This does not mean that they are bad. It does mean, though, that when a minority attempts to claim a little bit of space for themselves, the privileged people will feel attacked. They might feel that the minority is, by trying to exercise their own voices and claim their own space, calling the privileged group intrinsically bad.

But here’s the catch–if the minority group devotes their limited attention and energy on reassuring the privileged group and helping them manage and process the transition…then the privileged group is still taking up all of the space!

There is not actually a way for the minority group–and to be specific again, I am talking about disabled people, about autistic adults–to win here. Either we let ourselves be co-opted into soothing decent people that they are in fact decent people, or we are a hostile force to be at best ignored and at worst fought. Either way, the privileged group–non-autistic people–is still the center of the conversation and still makes the rules.

It is completely unacceptable.

So, for future reference? If someone positions themselves as an “ally” and expects some sort of acknowledgement or praise or thanks for it: I disengage. I could not be less interested in having conversations which adhere to this power dynamic. I’m busy: I have a liberation to craft.

I would love it if you could join me.

Quiet Hands

TW: Ableism, abuse

Explaining my reaction to this:

means I need to explain my history with this:

1.

When I was a little girl, they held my hands down in tacky glue while I cried.

2.

I’m a lot bigger than them now. Walking down a hall to a meeting, my hand flies out to feel the texture on the wall as I pass by.

“Quiet hands,” I whisper.

My hand falls to my side.

3.

When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed.

4.

In a classroom of language-impaired kids, the most common phrase is a metaphor.

“Quiet hands!”

A student pushes at a piece of paper, flaps their hands, stacks their fingers against their palm, pokes at a pencil, rubs their palms through their hair. It’s silent, until:

“Quiet hands!”

I’ve yet to meet a student who didn’t instinctively know to pull back and put their hands in their lap at this order. Thanks to applied behavioral analysis, each student learned this phrase in preschool at the latest, hands slapped down and held to a table or at their sides for a count of three until they learned to restrain themselves at the words.

The literal meaning of the words is irrelevant when you’re being abused.

5.

When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.

6.

Hands are by definition quiet, they can’t talk, and neither can half of these students…

(Behavior is communication.)

(Not being able to talk is not the same as not having anything to say.)

Things, slowly, start to make a lot more sense.

7.

Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.

We threw the straps away. His old school district used them.

He was seven.

8.

Terra can read my flapping better than my face. “You’ve got one for everything,” she says, and I wish everyone could look at my hands and see I need you to slow down or this is the best thing ever or can I please touch or I am so hungry I think my brain is trying to eat itself.

But if they see my hands, I’m not safe.

“They watch your hands,” my sister says, “and you might as well be flipping them off when all you’re saying is this menu feels nice.”

9.

When we were in high school, my occasional, accidental flap gave my other autistic friend panic attacks.

10.

I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.

My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.

My hands are an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.

When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.

My hands are more me than I am.

11.

But I’m to have quiet hands.

12.

I know. I know.

Someone who doesn’t talk doesn’t need to be listened to.

I know.

Behavior isn’t communication. It’s something to be controlled.

I know.

Flapping your hands doesn’t do anything for you, so it does nothing for me.

I know.

I can control it.

I know.

If I could just suppress it, you wouldn’t have to do this.

I know.

They actually teach, in applied behavioral analysis, in special education teacher training, that the most important, the most basic, the most foundational thing is behavioral control. A kid’s education can’t begin until they’re “table ready.”

I know.

I need to silence my most reliable way of gathering, processing, and expressing information, I need to put more effort into controlling and deadening and reducing and removing myself second-by-second than you could ever even conceive, I need to have quiet hands, because until I move 97% of the way in your direction you can’t even see that’s there’s a 3% for you to move towards me.

I know.

I need to have quiet hands.

I know. I know.

13.

There’s a boy in the supermarket, rocking back on his heels and flapping excitedly at a display. His mom hisses “quiet hands!” and looks around, embarrassed.

I catch his eye, and I can’t do it for myself, but my hands flutter at my sides when he’s looking.

(Flapping is the new terrorist-fist-bump.)

14.

Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you…

if you…

if you…

15.

Then I…

I…

.

Theory Of War

I’ve told this story before.

I didn’t have any theory of mind until I was 13.5. I have a very poor autobiographical memory, but I remember the acquisition vividly. I was in gym, attempting to serve a volleyball, and I turned to Sarah, monologuing in my head about something (a strategy I had developed last year to help me with thinking) and she was thinking. I had a mental stream of consciousness in my head. So did she. I looked around the gym. So did everyone.

I was thinking about them. They could think about me.

I would never feel safe again.

A lot of things changed with that realization. I’d never gained any information from eye contact, but now it terrified me. I’d been abused by my peers, but now I realized that there was a persistent mental component as well. That they wanted to hurt me. They thought about me being confused and scared, and they liked it. I’d been doing very well without any sort of therapy or medications for almost a year—I was back at the doctor’s within a month, got another new therapist, and soon started medication. My panic attacks began to last upwards of 36 hours. I started banging my head. I damaged my eyes. I started gouging out my skin. I got a staph infection, and I almost died, twice. I am covered in scars and discolorations.

I am told that I was not, before this discovery, an anxious child. I generally felt safe.

(Inside, if not out.)

I owe a lot to my discovery of theory of mind. I just can’t think of one positive.

I can’t pass the Sally-Ann tests, even now. The language confuses me. But I do know, now, that other people have minds, and they can think with them. About whatever they want. About me.

Which means I will never, ever be safe. I never was.

After all, it’s not just that other people have minds. It’s that they can think things I don’t. They can be thinking about me without my knowledge. But it gets worse.

They can be wrong.

Maybe because I’m autistic, and people think (there we go again, theory of mind) that this means I am a robot. I would love to be a robot, personally. I am always very concerned with accuracy. The thing that upsets me most about “autism science,” isn’t actually the dehumanization and the consequences—it’s the bad science. The most terrifying and distressing thing in the world to me is something being incorrect.

Maybe it’s because I’m autistic, and thus a robot. Maybe it’s because I’m autistic, and therefore a simpler, lesser, smaller brain and in desperate need of order. Maybe it’s because I’m autistic, and therefore abused, and I know the consequences of acting on mistaken beliefs about someone, know them in my bones.

It’s terrifying.

My ability to acknowledge other minds means that I can converse more effectively than I could before. It also means I am never, ever safe. It means that I can see people being wrong, and I can see other people accepting and believing and spreading the misinformation, and I have to keep quiet. But to me, danger and anxiety and this is wrong are all the same.

So I am never safe.

I have theory of mind, now. I’d like to call it something more accurate.

Maybe theory of war.

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!

On Being Articulate

They say I’m articulate.

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

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

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

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

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

I’m really quite social.

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

I can answer every question you might ever have.

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

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

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

I am verbose and prosaic in my speech.

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

I have such a good grip on the English language.

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

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

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

I can say whatever you ask of me.

(I’m very obedient.)

I’m an Acceptable Autistic.

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

I’m a Forgettable Autistic.

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

I’m articulate.

(So you don’t have to listen.)

Dear “Autism Parents”,

I want to clear a couple of things up.

1.

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

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

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

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

2.

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

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

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

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

3.

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

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

4.

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

5.

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

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

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

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

6.

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

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

(Is Stephen Hawking low-functioning?

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

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

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

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

7.

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

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

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

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

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

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

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

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

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

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

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

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

9.

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

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

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

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

I call bullshit.

10.

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

On days like today?

It’s just a lifeline.