*****

(The best part of the story is what I leave out.)

*****

I met a mini!Kurt the other day. He was very blonde, with intense brown eyes, but he was very particular about his hat, and his dad was Burt Hummel in all the ways that counted. I’d guess he was about four–his voice was still all exclamation points.

“I’M MATT!” he said, hiding his face from me, and then trying to run out of the waiting room. It was cool though–I don’t know if I even managed ahi.

He was at the stage where he was still mainly echolalic, but he was learning how to store and recombine and modify phrases to work for him. I was excited for him, and almost proud, because he’d mastered two essential skills for that–swapping pronouns, and prompting other people to remember their lines. His dad, trying to bundle him into his coat, was not playing along at first.

“I’M SO CUTE!” mini!Kurt reminded him, trying to make his arms go into the right sleeves. “I’M SO CUTE!? I’M SO CUTE?”

“Yeah,” Dad sighed, wrestling with the zipper. “You’re cute.”

“SO CUTE?”

“So cute, that’s right.”

Mini!Kurt, satisfied that everything was going according to plan, was ready to leave. “BYE!” he called, waving his hand backwards at me, a perfect mirror image.

I waved. Had my mind been more together, I would have flapped.

*****

Echolalia is metalanguage.

*****

Echolalia is an unexpected treasure hunt. You can be watching a bootleg musical you never thought would be any good, but turns out to be beautiful, and suddenly they’re going up the scale singing hot hot hot hot, and you’re back with Kimba, and he’s saying hot hot hot hot–only he’s got this elaborate metaphor about fire and anger going on right now, and here it means I think you’re mad at me, so I’m mad at you, don’t touch me.

And then you’re back at your laptop, wondering when he started watching musicals and rethinking half the things you thought you knew.

*****

Echolalia is what you use when language is too much. It’s just also what you use when it’s not enough.

These things are not opposites.

*****

Walt knows my name, but he’d rather call me Mulan. We’re on the swings, trading movie titles.

“101 Dalmations?” I offer.

“Mulan no thank you!” He chides. Considers. “Rio, with Jesse Eisenberg?”

I grin. I’d only said that once, but he’d picked up on my crush, and he offers it back to me when I am having a hard time with the conversation. I try to remember his favorite, as a peace offering. “Kung Fu Panda II, in theaters now?”

I get it right.

Months later, it will still be the best conversation of my life.

*****

Echolalia, from Echo, of Greek mythos, cursed to speak only through the words of others.

We make it work though.About the cursed: opinions aren’t the same as facts, and no one ever asked Echo.

To be fair, no one would have listened, either.

*****

As much as I can hate words, I delight in them, too. When I’m echoing, referencing, scripting, riffing and rifting, storing and combing and recombining, patterning, quoting, punning, swinging from hyperlexic memory to synesthetic connection, words are my tangible playground.

Make me talk like you, and you’ll get a bunch of syntactically sophisticated nonsense. Let me keep my memories and connections, my resonations and associations and word-pictures, and if you slow down enough, you might hear something ringing true.

These are the words I’m using right now. It’s okay if you can’t see the picture yet; I can’t either. It’s coming together though, the more I practice them.

Ethnography of robotics.

Neuropoetics.

Girls like you always get to see Ireland.

Send my love to the leprechauns.

Please don’t special-episode me.

Why don’t you trust me? Because, honey, you keep setting things on fire.

The first rule of tautology club is the first rule of tautology club.

I think they might be four separate pieces. The joy is how they come together.

The bestworst part is no one ever knowing.

*****

(The best part of the story is what I leave out.)

*****

I don’t trust my words on my own.

That’s not why I echo though.

I know it’s tempting, but, listen.

*****

Or maybe I’m lying, because I’m not brave enough to explain.

Don’t worry though. I know that Kimba loves musicals now, and Walt named me after a warrior.

We’ll get there.

That sentence has taken two months to write.

When I was a little girl, I was scared.

When I was a little girl, I was a lot of things. I was functionally blind, and other kids teased me about my huge, staring eyes. When I was a little girl, I was somber. When I was a little girl, I was remote. When I was a little girl, I was devout.

When I was a little girl, I was scared, and I was alone.

*****

I don’t know how to tell you about growing up scared and alone, except that I don’t want to, and maybe that says enough. I can tell you, though, what changed. What changed is that I was fifteen, and I found this.

I was fifteen, and I spent months circling Amanda Baggs’ site, skimming the front page (the background and url were different then,) afraid to click on any of the posts, testing and tasting the words autism and autistic and okay over and over in my mouth. I had found someone like me. I had found someone like me, and they were fine.

It was months before I could look at this straight on, accept it, and click a post to read. Eventually I was brave.

When I was fifteen, I stopped being alone.

When I was fifteen, I stopped being alone, and that meant I could stop being scared.

*****

A little more than a month after I wrote Quiet Hands, I woke up and found that the number of hits on this site had erupted. Quiet Hands had gone viral, and there were a dozen comments waiting in moderation, links all over facebook, emails. I was bewildered–it was a stupid, personal post I’d written in the middle of the night to process a flashback a terrible character on a wonderful show had triggered–and overwhelmed by the attention. My friends can attest to my state that week–head-banging, bewildered William Schuester did something good by accident, obsessively relaying the ever-increasing hit-count as my words died out. I told one of them:

The irony in writing about what I write about is that you write about not-existing, and then you very suddenly exist.

I’m not so good at handling that.

But as I adjusted, as I pieced together the history of what happened and approved comments and somehow, strangely, kept existing, I started being able to read what people were saying. I started getting emails from parents who wanted me to know that they’d brought the piece into IEP meetings and had it written into the IEP that their child would be allowed to stim and move, from parents who’d talked to their child and asked if this had happened to them, told them to come and tell if it ever did, from teachers who’d thrown away their Quiet Hands posters.

I get a couple of these a week, now, and I’ve never been able to respond because I cry every time I read them.

*****

When I was a little girl, I wanted more than anything for someone to tell the loud, looming people to stop.

*****

(No one ever did.)

*****

There’s another class of responses I’ve gotten. Autistic people, writing in. Sometimes only a word, a word scraped out and bled through with meaning I understand and never will be able not to.

Yes.

*****

Thank you. 

In my school, it was “sit on your hands.”

You remind me I’m a person.

I feel a little less alone.

******

I see another little girl, flapping in the pharmacy.

Raising my arms comes a little easier, every time.

Filed under: advocacy, personal ]]> https://juststimming.wordpress.com/2011/12/13/response/feed/ 13 juststimming https://juststimming.wordpress.com/2011/12/12/stuff-and-also-things/ https://juststimming.wordpress.com/2011/12/12/stuff-and-also-things/#comments Mon, 12 Dec 2011 22:41:49 +0000 Julia http://juststimming.wordpress.com/?p=85 ]]> This is a post of short, housekeeping things that are not enough for posts in and of themselves but together form one thing. It is not an essay.

So!

I haven’t really written anything since October. This is because I am Autistic, and I am inconsistent and cannot communicate on anyone else’s schedule–or even one of my own. I do have some essays planned to finish and go up soon. I actually have dozens of drafts on my computer, ranging from the rest of Metaphors Are Important to whole new series and a bunch of other things. But they aren’t ready yet, and that’s okay.

I say “that’s okay,” mostly to remind myself. I have a lot of anxiety surrounding my writing, and in particular this site.

Which brings me to my next item of business…

I cannot usually answer comments. It’s in part an access issue, as well as a matter of anxiety, discipline, and time, and it’s also a protective mechanism–my language isn’t the best for brief comments, and I have no desire to start a comment war. It’s my general internet policy, which I try to follow with varying degrees of success. I have similar issues answering emails. I wasn’t going to ever explicitly state this, but it turns out that just because I’m not writing doesn’t mean people aren’t reading, and since Quiet Hands (and more recently, Obsessive Joy) exploded, I’ve gotten more comments than I ever thought this blog would see.

A lot of those comments have made me cry, as much as the attention has made me want to run away. I am planning on posting a more specific response tomorrow, but for now I just want to say thank you. Thank you. Thank you for reading, thank you for listening, thank you for taking action, and thank you for letting me know that all three of those happened. I cherish your comments.

In the interest of directing you to something similar to read, an idea that needs to go viral, I’d like to link you to The Unbroken Spectrum: Stockholm Syndrome, over at Shift Journal. I did not write it. It’s important.

I’ve been working on several projects since October, all related in odd ways, which you can expect to hear more about soon.

I also participated in ASAN’s ELSI  symposium at Harvard Law this weekend, which was fantastic. I don’t have words for this experience, and I don’t know that I ever will, beyond too much excitement and optimism to be contained.  I’ll link to the youtubes when they are available. I spoke briefly about the gap between theory/law and what actually happens to autistic people. I actually spoke much more briefly than I would have liked, since my vision cut out about halfway through my response and I could no longer read what I’d scripted out. Perils of being a self-advocate.

And that’s what you’ve missed since October! Hopefully things will be back to normal here tomorrow. Thanks for bearing with me.

Today is Autistics Speaking Day.

Today I am silent.

Part of being autistic is that things do not always go according to plan. Part of being autistic is that I can’t always synch up with everyone else. Part of being autistic is that I can’t, in fact, deliver meaningful content and communication whenever I’d like–or, really, whenever other people want me to. Part of being autistic is that I can go months without anything much to say at all, really.

Part of being Autistic is knowing that that’s okay.

Most of my writing and thinking this past month has centered on the things I’m interested in–Glee, Phineas and Ferb, Community. Mostly Glee. I’ve been doing other stuff, sure, but much of the thinking is still pre-verbal. I have thoughts I can feel stitching themselves together and lining up about college and developmental disabilities, about quite hands, about the power and terror of words like “stop” and “I need help” and “no,” about abuse, about when autistic people are listened to, and about autistic vs Autistic….but they aren’t ready yet. They aren’t even words. Most of my posts here have taken months of patience, of silence, of frustration and catharsis and self-injury and all kinds of “behaviors” and meltdowns and unpleasantness, before I could sit down and everything came together. I’m in that transitional period again now, and it’s quite uncomfortable much of the time.

I’ll wait. I’ll be silent. I’m Autistic–I’m allowed.

Today is Autistics Speaking Day. Some of us can’t speak today.

I hope you’ll still listen, when we can.

This particular piece is something I’ve been struggling with for months, and it finally came out tonight.

*****

“I’m in a wheelchair, but I’m still a guy.”

First, an awkwardly personal moment.

Several months ago, I was outed by another teacher to several speech pathologists at work. One of the women was completing her practicum, and her supervisor and instructor were observing her session with our pupil. I was there to keep him calm, as being watched by five or six teachers as you complete a speech exercise when you are working through selective mutism can be rather stressful. I wasn’t doing anything to draw attention to myself, just sitting nearby and redirecting or reassuring him when he needed it. I was dressed appropriately; I made sure to sit just like the women around me; I kept out of their conversation but smiled and nodded and was polite and quiet. I’m not sure exactly when it was that I made my fatal mistake. I kept my hands in my lap, but it might have been when I answered a question about his AAC device a little too knowledgeably or with a little too much enthusiasm. Perhaps it was when I noticed the tightening of his movements and suggested he have a quick break. Either way, eventually one of the women wanted to know what my job was, exactly. “Oh, she’s our intern,” the teacher said, and I smiled and nodded and then she kept talking. “She’s like our translator for half these kids. She has a really unique understanding–she’s also autistic, like them.”

And I was out.

It’s not the kind of outing you were expecting, was it?

Would you believe me that it was more terrifying, more humiliating, with worse consequences than when I was outed as a lesbian in that room earlier that year?

That’s one anecdote. Here’s another.

As a simultaneously queer and developmentally disabled fan, one of my great struggles last season was watching the ship wars between Brittana and Bartie fans. There weren’t a whole lot of Bartie fans in the first place, and I quickly figured out that, as a lesbian, I was supposed to ship Brittana. It was practically compulsory. Their relationship was groundbreaking and I was supposed to be excited and moved and relate to it and no, no one wanted to hear my thoughts or see my excitement on seeing a couple with disabilities navigating high school together. Who cared?

I wanted to know why only one story, one half of myself, counted. No one could explain.

A third story, and then to the point. Perhaps you can see it already.

I went to a college, for a while, infamous for its lesbians. I’m sure there’s a more decorous way to put it; I never cared to learn. It was a completely and utterly different world from the one I grew up in, and I loved every last queer second of it. Finally, being a lesbian wasn’t an issue!

Having disabilities still was.

I mean, how was anyone supposed to navigate a relationship with someone who didn’t like to talk, who sometimes couldn’t, who wore massive noise-blocking headphones at dinner and who couldn’t manage parties or groups of people or sometimes even just one person? What were the rules for that? Did that even happen? How do you flirt with someone who won’t make eye contact?

It’s important that I am very clear here. It’s not that my classmates were horrible people. It’s not that at all. With few exceptions they were nothing but kind–and that’s a loaded phrase, but there’s not time for it here–and universally they did know how to relate to someone who could geek out about the neuroscience (and cognitive science, and philosophy) of vision, who could help with their linguistics homework or sing along to Last Friday Night or mix screwdrivers with alchemical precision. They just didn’t know what to do when that person wore glasses because she’d damaged her eyes banging her head repeatedly against walls, or who sometimes needed to pause in the middle of a conversation and diagram a sentence so she could understand it, or who learned music so quickly with the same ears that also made her scream when she wasn’t warned for a fire drill. There weren’t any stories about girls who went to college already well-verses in mixing drinks because they’d gotten so good at mixing 125 mls of Zoloft into eight ounces of pineapple-orange juice every morning.

There weren’t any stories about people like me. I was not something to be conceived of, I was not expected. There were no scripts. I didn’t exist.

(So I didn’t count.)

Now, to the point.

I am a lesbian with disabilities. I am an autistic lesbian; I am a lesbian with bad brains.

Glee fandom has taught me that exactly half of this identity is acceptable.

I am sure I should be grateful for this. It is an improvement, after all–outside my bedroom door, I’m not allowed any of it. Being a lesbian is a good way to get myself raped or killed in my, in this, town. I know this. So I apologize for my ungratefulness, for my stubborn, bratty selfishness, when I point out…

…being half a person means that I’m still not actually a person at all.

Here’s the thing. I can’t actually turn my disability off. I can pass as less disabled, sure–not as non disabled, but less, of course, in some circumstances, if I’m prepped enough. Hey, did you catch that? I can pass. Passing is a concept that applies to ability too, not just sexuality or race? Did you know that?

Probably not, actually.

The Glee fandom, at least the parts I’m in where I encounter this problem, seems fairly knowledgeable and progressive and all those other nice, soothing words about a lot of things. People generally know what I mean if I say Kurt can’t pass or Blaine passes as white. It’s not perfect, of course, but I’m far more likely to be understood than if I say Artie can normalize himself or Brittany has become increasingly unable to pass.

Pass as what? She’s bi, everyone knows that, what else could she possibly be passing for?

(Well, actually, she’s written and played as disabled, the actress has said so.)

No she’s not. You’re giving the authors way too much credit. That must have been an accident. Sloppy characterization, bad writing, lol Glee…no. They wouldn’t write that. She’s not.

(And then this is where I finally, finally, get nasty.)

Am I an accident?

Am I sloppy?

Am I not supposed to exist?

Is my story worth telling?

It’s not supposed to be personal, except for all of the years I’ve known the answers to those questions. Yes, yes, no, no.

I think the casual impersonality of it is what makes me feel unsafe, actually. It rests on the assumption that people like that aren’t reading or participating in these discussions (how could they, they’re retarded) and that our stories don’t even exist to be told. I mean, do disabled people even have sex drives?

And yes, to be clear, I absolutely do mean it when I say I feel unsafe. I’m not sure how else I’m supposed to feel when I realize that I do not exist to large swaths of people.

A great deal of the time, passing means passing as nothing at all. I don’t exist. And you know, still, I automatically typed and that’s fine, that’s whatever after that last sentence, because you’re not supposed to make an issue of it. Not supposed to draw attention. I don’t exist.

I’m not in your stories. When I see myself, I’m wrong. I’m bad writing. I’m not in your stories, and I don’t get any stories of my own. I don’t exist to the greater world, and ultimately I’m not allowed to exist to myself.

But that’s fine, that’s whatever.

There’s a violence in invisibility, you know.

There are little speech patterns that creep in when we talk about Brittany, sometimes. About who deserves her, as if she has no agency, as if she can’t know her own mind.

(Do I? Do I get agency? Or do I just need to be grateful for whatever affection and attention I do get? Should I find the boys from ninth grade again and apologize to my abusers for kneeing one of them in the balls? Should I have known it wouldn’t get better?)

There’s a violence I still can’t talk about, in the end.

Let me take the focus off me. I’ve been debating whether or not to leave that sentence in. Let me take the focus off me, because this is not how you stay invisible. But…but keep the focus on me, because isn’t that the point? Isn’t that what this show, or at least this essay, is about? Keep the focus on me, because there are so many different ways to be invisible.

Quinn. Quinn and her slow, silent breakdown all last season. Quinn and Lucy. Blaine. Blaine and looking back and realizing that some needy, broken sophomore was trying to mentor an older, stronger kid, because he can be however you want him to be. Mercedes, swallowing a crush she knows goes beyond all reason, but reason never had much to do with it. Mercedes, good old reliable Mercedes, realizing that the moment she’s not so reliable, the moment she wants more, the moment she’s visible, is the moment she’s no longer wanted.

I’ve been all of those kids. I’ve lived all of those stories. So, so many of us had.

And when we hear that these stories don’t exist? That they’re just bad writing? Just lazy plotting, poorly executed versions of better, real, worthy stories? That they’re not worth telling on their own merits, that no one wants to see that?

We don’t argue, usually. How are you supposed to argue when apparently a story you’ve lived is just some hackneyed, inferior attempt at something worth attention?

We don’t argue, because our stories are judged unacceptable and by extension so are we, and that’s a conversation we don’t actually need to have again. Glee tells a lot of stories, and they aren’t usually the ones the real people want, and of course, we already established this, we aren’t allowed our own stories. No, of course not, and should they somehow be written and acted and shot anyways, they can still be grabbed and labeled as something different entirely, graded against an entirely different narrative, and thus still easily found wanting, derided, and thrown out.

And that’s fine, that’s whatever. That’s how it works. I just want to know…

…why.

I just want to know…who decides whose stories get told?

Who decides which are worth telling?

And why aren’t mine on that list?

I should note that this actually turned out to be the second part of five, not the first of three as I say below. The first part is The Greatest Crime In Television which I did a while ago.

This is tragically fandom-specific–and Glee fandom at that–though I daresay the sentiment and logic is applicable elsewhere. It is angry and the writing is self-indulgent and too clever by half. It is the first completed installment of three in the Don’t Give A Damn ‘Bout My Bad Reputation series, the other two of which are Grilled Cheesus And Race and Moral Ambiguity vs Author Intent. More may come! They can be read in any order. The posting is random, at intervals, and probably requires more thought than I can afford.

(This is what I do instead of the magic-meta. I am sorry.)

Dear Fail!Allies,

I am not one who finds value in fail!culture or analysis by bingo card. These are terms I invented, so I will explain: I don’t like playing games where the viewer who wins is the one who managed to identify the most -isms or gender/disability/sexuality/class/race!fail in a given piece of media–at the purest level, in any turn of phrase. I am suspicious of any and all politics that can be fit into a box on a bingo card (I got three racisms and an ableist slur! Idiotcounts, right?) I believe in complexity, nuance, and no absolutes or right answers.

I hate widgets and buzzwords and I distrust instinctively anything that makes thinking, reacting, or living into something easy or evaluative. A culture that puts the people with the most Internet access or the greatest ease manipulating words and modulating responses as arbiters of what is good and right is a culture that is not safe for me or a lot of others. I know this instinctively. A culture that values criticism over introspection is not one in which anything is being refined or built towards. A system of evaluating evolving materials and breakable people as though they were static is self-destructive and completely counter-productive.

To borrow your language for a moment: I am not advocating the abandonment of academic or social criticism. I am advocating a critical engagement with the nature and forms of popular “criticism” itself.

Let me abandon my Internet pseudo-scholar voice for a moment. I’ll be a meme instead. I will break out my own bingo cards and “call you out” on your own “massive fail.” Here we go:

You’re doing it wrong.

When you worry about Sue “corrupting” poor, sweet Becky and Brittany and taking advantage of their innocence and naivete and childlike trust?

That’s ableism. That’s more ableist than anything the show has ever written.

You’re doing it wrong.

When you call the writers (led themselves by a gay man) homophobic for not having two gay characters with a history of violent and sexual abuse due to their sexuality make out in one of the least-safe environments in their world?

That is actually about six different levels of trivializing and presumptuous and privileged and fetishizing and yes, homophobic–to say nothing of the completely and utterly fucked politics that might make it okay for a straight “ally” to call a gay man homophobic.

You’re doing it wrong.

When you go into a rage that the plus-sized actresses all have multiple stories about food or size, and ignore the needed and positive messages sent about body image, self esteem, and size acceptance? When you complain that Puck’s interest in them is unrealistic, that Lauren isn’t pretty enough, that Sam would never date a Black fat girl?

Well, to quote the lady herself: “Okay, you need to stop, because you just said like ten offensive things and I’m starting to get embarrassed for you.”

You’re doing it wrong.

When you wonder if Brittany can ever consent to sex, given what her mental age seems to be?

Developmentally disabled people everywhere pray to be saved from this well-meaning kindness and concern.

You’re doing it wrong.

When you explain that it’s problematic for a Black girl to use tots as a plot device, but are silent about Santana’s obsessive love for BreadstiX, Coach Bieste eating entire chickens or huge bowls or pasta, Finn praying to a sandwich, and Sam’s body image problems? When you actually believed her storyline was only about tots, because what else could she possibly have a storyline about that episode, could she possibly be using food as a cover for, why on earth would she be taunting her increasingly distant best friend and crush with his one sure trigger?

The writers aren’t the ones who can’t see beyond some powerful stereotypes in this situation!

You’re doing it wrong.

When you complain that Kurt Hummel is too effeminate or “stereotypical” and why can’t we get a real gay character, someone a little less of a sissy…

….

You’re doing it so wrong it is physically impossible for you to be more wrong.

When you wonder when Artie will ever talk about his accident, or if we’ll ever get to see it, and weren’t his scenes with Tina in Dream On so touching, and why didn’t his Born This Way shirt say anything about his legs? When you ignore all his lines about being fine with himself, and you trample all over an amazing storyline about disability acceptance and pride?

I know that pity and sensationalism are easy, but they’re also disrespectful and actively harmful.

You’re doing it wrong.

When you get offended on the behalf on Black people everywhere because two characters who are demonstrably full of shit, if not actively racist, called Mercedes lazy and you went ahead and believed them despite overwhelming evidence to the contrary including an entire storyline in that very episode, an episode explicitly about race, dedicated to showing how even Rachel realized that in the end everyone was explicitly screwing Mercedes over?

Yeah, sure, the writers are the ones relying on racist stereotypes instead of deconstructing them in characterization and the narrative. Mhm.

You’re doing it wrong.

When you hear some people complaining about Sugar appropriating an Asperger’s diagnosis to be rude, and you rush to decry the inherent ableism of the character without checking your sources–at which point you will discover that the people leading the charge are parents of autistic kids, not autistic themselves, do not believe “ableism” exists, and regularly tell autistic adults to go kill themselves? (Including this very one!) Or that a lot of autistic people are pointing out that Sugar represents an incredibly common problem for people with a lot of different diagnosis, a problem you contribute to every time you say you’re “just a little OCD” or “feeling kinda bipolar today” and they really appreciate her storyline?

Here’s a handy hint. It will come in very, very useful in the future, I think! Don’t tell a minority group how they should feel, what they should think, what they should want, or how they should be, or are, being portrayed.

You’re doing it wrong.

Look. You can dress it up however you want. You can appropriate and mutate academic words and theories, you can turn the world into your own personal trooper tale, you can position yourself as an ally or champion, you can ‘splain and ‘splain at whoever will listen, you can look for things to be offended by and end up creating more, you can declaw and silence actual advocates and activists because this is just clearly too personal and painful for them and you’re quite eager to help the freaks poor, poor dears….

You know. Whatever helps you sleep at night.

You do whatever you want. I just want you to know two things:

1. You’re doing it wrong.
2. Minorities everywhere pray that you will one day stop using words that you don’t know the meaning of.

We do not, actually, need a swarm of well-meaning people brimming with kindness and interest and pity and fascination and rage, armed with degrees in sociology or gender studies and the right kind of politics, to defend us. We know, we know. You know it.

We lived it.

Please, please listen to us.

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.

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…

.

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.