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?
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 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.
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.
First, a story. (A little Christmas story. I call it: the story of Schmuel. Tailor of Klimovitch.)
(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, 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.
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.
So I’ve been busy.
INTRODUCING: The Loud Hands Project.
The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.
Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience. The website will host shorter and multi-media submissions along the same lines, along with additional materials and videos, and serve as a focal point for the project and community.
The Loud Hands Project is about survival, resilience, and pride. The Loud Hands Project is necessary because autistic youth face systematic oppression, abuse, and bullying every day. It does not “get better” for us—typically, upon graduation, it actually gets worse. This must change.
The Loud Hands Project is a structured, multi-facetted response by the Autistic community to the systematic disenfranchisement, bullying, and abuse experienced by autistic youth, young adults, and self advocates. Taking the form of a publishing effort by the Autistic Self Advocacy Network and spearheaded by Julia Bascom, The Loud Hands Project consists of multiple prongs organized around the theme of what the Autistic community refers to as “having loud hands”—autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience. We focus on cultivating resilience among autistic young people and empowering us in building communities and cultures of ability, resistance, and worth. To quote Laura Hershey: “you weren’t the one who made you ashamed, but you are the one who can make you proud.”
How You Can Help:
We need to raise ten thousand dollars ($10,000) to help cover the initial costs of putting together and distributing our first anthology and launching our website. Please consider making a donation here—every little bit helps!
When I was a little girl, I was scared.
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.
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.
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.
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. It’s an annual holiday of the Autistic community that started last year in response to some ill-advised advocacy attempts, and I hope it continues until someday every day is Autistics speaking day. It’s one day of the year where social media and the blogosphere are reserved for the Autistic community to speak out in a concentrated effort.
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.