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.

The Loud Hands Project

So I’ve been busy.

INTRODUCING: The Loud Hands Project.

Our Story:

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.

Our Impact:

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!

Spread the word! Check out the share tools on our page, and please use them! You can visit our Facebook page, tumblr, and twitter too, and tweet about the project using the hashtag #loudhandsproject.

Whose Stories Get Told: Regarding Feeling Unsafe In The Glee Fandom

“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?

“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.

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!

Patronization

I received the feedback forms from the presentation I gave in August. The responses were uniformly positive—I’m just not sure I can trust them. See, I was described by various respondents as “inspiring,” a “kid,” and “a very good role-model.” (But relatively “empowered” and “self-sufficient,” as opposed, one can assume, to the Real Autistic People.)

Can we talk?

First of all, let’s get this out of the way: I am not a kid. I am, indeed, rather young, and as embarrassed about that as I am, there is nothing wrong, really, with calling me a kid. I call myself a girl. But calling my co-presenter, who just earned her doctorate, a kid? Makes me suspicious. It makes me remember how in popular conception there are no autistic adults, only children, and the children never grow up (or even reach puberty.) It reminds of how I listened to a man giving a presentation about a “community” he was designing for “children with autism”—except every one of these “children” was over the age of 21. When asked, he explained that “I call them children because they will always be children to me.”

And when that is the dominant context for these discussions? Then no. You do not get to call me a kid.

Similarly, “inspiring.” I’m amused that the same qualities which make me a failure and a disappointment in one context make me inspiring in another. But it’s not funny at all. I write and present furiously about injustice, about violence, about the things they do to us. No one who actually hears what I say walks out of the room inspired. They walk out furious. This? Is not inspiring. It’s terrifying. I don’t write to move or to touch, I write to survive, and it’s only inspiring if you paint over all the pain fueling it and everything it’s about so that you can enjoy the utterly adorable sight of someone trying to advocate for themselves.

(At the conference, Zoe asked DJ how he dealt with hate-speech. He told her to be brave, because that’s all you can do in the moment. A woman sitting next to us was so touched that she teared-up and put a hand over her heart. Not appalled that we live in a world where people argue about whether or not it’s morally justifiable to kill us. No. Inspired by our adorable attempts at bravery.)

I’m not performing for you.

This is not about your reactions.

This is not supposed to be easy.

It’s not easy for us at all.

I’m not a good role model. I’m far too angry and unpredictable for that, and if I were to mentor anyone the first thing I would tell them would be  “figure out how you want to be.” There’s not a correct way to do this, there’s not one right way to be an adult autistic, there are no acceptable autistics, and it terrifies me and sickens me and makes me worry about what I did wrong to make someone think I could be any of those things.

Finally. I am utterly fascinated by the use of the descriptors empowered and self-sufficent. Those are great words, and I plan on adopting them. But saying I am those things, and other autistics aren’t or can’t be, tells me, if I had any doubts still, that you sat down for an hour and fifteen minutes and didn’t hear a word I had to say.

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.

Please, Please Believe Me

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

Some resources to start:

You Get Proud by Practicing by Laura Hershey

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

Speech (without a title) by…me

The Letter:

Hi.

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

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

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

Please, please believe me.

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

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

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

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

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

You are not alone.

The Greatest Crime In Television

Sometimes I think the greatest crime in television is caring.

Giving a damn is already practically illegal anyways, so it makes sense. A lot of the time, in fact, giving a damn is actually more of a punishable offense than anything actually offensive. I get yelled at for organizing books too efficiently, for Chrissakes. It doesn’t even stand imagining, what happens when we say stop it, don’t call them that, you’re talking about another person, do you mean to, do you understand, you can’t do that. When I ask someone to please don’t say “retarded,” it hits me, you’re working in a fucking special ed classroom for crying out loud, your student is three feet away, what are you thinking, it is agreed that the problem is that I can’t take a joke.

I cried for ten minutes when they said “the ayes have it” last night and New York got marriage equality, and Dad told me to quiet down, he was trying to sleep. I didn’t know what was worse—not being able to tell anyone about the results, not being able to tell anyone about the newest cut that barely even stings anymore, or being so fucking grateful that at least I wasn’t called dyke, because we know how that one goes.

(My brother gave me a sarcastic thumbs-up, and my sister told me that she’d known it would pass, and she’d give the rest of the country ten years. I wanted to congratulate her on being so blithe, I wanted to ask if she knows how long a wait ten years is, I wanted to remind her that at least mom would go to her wedding, I wanted to ask her if she’s ever watched people vote on her right to make a family and if she’s ever seen them vote it down. But that’s not funny or neat or easy and thus allowed, that’s messy and hurt and I would mean it, and so I kept quiet.)

I was at the White House conference on bullying in March, which framed violence, in all forms—physical, sexual, emotional, verbal—against students as a civil rights issue. In a group discussion, some immigrant students from the Chicago public school system told us, in excruciating detail, about the physical, racially-based violence they experienced every day. They said that, whenever they tried to report this violence to a teacher or administrator, the same response would come back:

“Why are you telling me this? You’re making me upset. You’re hurting my feelings.”

(The students are being beaten, are failing classes because of chanted racial slurs whenever they sit down, are afraid to come to school. The teachers feel bad because the students are implying that perhaps, if they are not safe at school, the teachers are not doing their jobs properly. The teachers’ feelings are hurt. So the students, the victims, get punished again.)

It’s not a racial thing. It’s not an issue of Teh Gay, or of cripples and madmen and fools. Strip away the aesthetic revulsion, the fear and the ignorance, the complicated socio-economic histories and the familial scars, and people still like to treat other as disposable objects, good for entertainment and not much else. We’re each other’s toys, and if we don’t amuse sufficiently then we probably need to be whacked a few times, the way you hit a CD-player when it skips. Maybe we need new batteries. Probably it’s easier to just throw us away.

(Some people say we evolved the way we did because we’re so good at killing, and we certainly killed off our preceding species quickly enough. It’s a quick hop-skip-jump from amusement to mascot to mystery to menace, and broken human playthings seem to implicitly threaten that we’ll steal, or at least break, all the other toys too. Loss and sacrifice and discomfort and fear we might be next can all trigger our kill-switches, apparently.)

Perhaps I’ve lived an exceptionally awful life, but I find that hard to believe when I watch flocks of smiling, popular people being silently unhappy together. There are reasons people lie about and keep secret how they feel and what they think, and I’ve seen one too many terrified college girls fighting and drinking and cutting all their hair off and then going to class the next morning with bright, store-bought smiles to believe that it’s just me.

True, I get furious, sometimes, when I tell someone about being mistreated because of my autism and they respond with a tale of their own frustration at the hands of some cruel peer or unnecessarily draconian teacher or boss. One of these things is not like the other, and the whole thing never reads as anything other than the familiar “that never happened, that story isn’s allowed, let me show you the script, let me show you the acceptable ways to be and get hurt, too bad they’ll never apply to you.”

Sometimes, though, these things are almost exactly the same in all the ways that viscerally matter. I’m abused because I’m a not-person. To hurt someone without using your fists you just make them feel like a not-person, or, at the very least, a not-okay-person, and you can do that to anyone. Everyone suffers because, as humans, we’re just naturally very good at hurting each other.

Which is not to say that we aren’t also very good at making each other feel incredible, or at least happy, or even just warm and safe for an hour, and that can be enough. We have families and stories, and these are not only terrifying weapons, but also powerful things that can create a lot of good—and when they don’t, we can make new ones. There’s joy and beauty in the world, and sometimes another human seems to hold it all in the spaces between their joints.

Maybe that’s why we hurt each other so very well.

It’s all very stark and dramatic, and that’s a useful way to make a point, but life doesn’t come with points. Life comes kind of blurry and murky and bled-together and wonderful, and maybe looking back you can scoop some of it into a coherent narrative, but the words are never quite sufficient. After all, they said I could get married means something bright and happy, but there’s also something angry and resentful and undefined, because they never asked if their marriage offended me. And then we have to think about all the things marriage means and represents, and what it means for the couples who, watching the votes be counted, whisper that they’ll still love each other just as much if it doesn’t pass. Life is just too big for the words we have and the stories we learn, except for when it’s the other way around.

Most of us don’t go around slaying dragons and going on quests of many miles. Happily-ever-afters are unsettlingly complicated, and the problem with slaying one Evil Overlord is that another always pops up. Curiously, Evil Overlords like to disguise themselves as people we rely on and must be polite to, and quests of many miles tend to consist of driving oblivious children to and from soccer practice, piano lessons, and gymnastics every day for ten years and never driving over and off the bridge.

The mass of men lead lives of quiet desperation is a truism, but no one ever asks why, and if maybe it’s because we think we missed the train to something spectacular years ago and there’s no honor in what we have left, and so we don’t claim the words and stories we were taught to dream as our own. We grow up, and we stop reading children’s literature and picture books, and we’re told that archetypes and mythos are something besides history and biography, and we lose our sense of importance and solidity and any sense of ownership of our own story or right to any words which might mean anything.

Stealing a person’s words, their ability to look clearly at something and see it and know that they do, is the smallest and easiest way to kill someone.

What I mean is, I say child abuse, and people think of my student, caged and beaten and raped and made to eat out of the garbage for nine years. Well, yes and no—yes, because if anyone deserves those words, it’s him, and no, because things are rarely so harsh and vivid and obvious. There’s a reason children like him are so rare and his situation comes up in textbooks as a Worse Case Scenario, one of the Worst in the History Of Our State. Life is a game of ripples and things adding up and subtle variations.

My student will never be the same because he never got to be not-afraid for his first nine years, until eventually he just couldn’t feel fear anymore. I will never be the same because they made me take my clothes off in the car once because I’d drooled all over them, and because I only had to be hit a couple of times before a raised voice was enough to have me looping those experiences and hitting my self, all on my own. His father hit him in places no one could see. I wished someone would just hit me one more time, now that I knew what I could do, so someone might believe me and maybe it would stop. One of those experiences is stark and dramatic and mercifully rare; one is quiet and common and so easy to justify, overlook, pass over. People see my student’s misshapen collarbones and fall silent in horror; no one notices that after a lifetime of being slapped and grabbed for flapping I can’t raise my arms from my side, because the whole point was to make me unnoticeable.

Our situations are different, and so it gets decided that one of them doesn’t count. Similarly, people who have never had the horror of growing up in a community where you get taken away if you’re not good enough declare that since my student’s institutionalization was stopped at the eleventh hour, it doesn’t count. (Just like, if you run away fast enough from the homophobes on the street corner, somehow magically nothing could have happened. Just like if you never say no, you must mean yes. Just like, if they don’t put a gag in your mouth or knock you out, you should be able to fight them off.) I’m glad the world is so very tidy and convenient and adjustable that knowing you were supposed to spend the rest of your life somewhere unspeakably horrible because you just aren’t good enough has no effect on a thirteen-year-old boy. I mean, clearly someone needs to tell him this, as he for some reason feels otherwise. Someone should also probably tell his classmates, who now know—and who always knew, but now it’s reconfirmed and a little more fresh in their minds—exactly how unsafe they are.

It doesn’t count because he doesn’t (we, they, you, don’t) count.

There aren’t any stories about that.

I have this niggling suspicion, though, that there are an awful lot of people in the world who have been told that they don’t count, don’t get to be in the stories, things were never quite bad enough, or maybe they were too bad to be real. I have this feeling that there are an awful lot of us, and that if we just stopped keeping ourselves a secret, we might blow that lie out of the water.

This is where Glee comes in.

Glee tells you, right in the pilot episode, that it’s about not-people discovering that they’re people. Oh sure, there are layers and complications and distractions and other features and a million different ways to say the same thing, but it really does come down to that. It always surprises me, because since when is that a story I see on my TV?

We consume media in a context of constant, casual violence against some and dismissal of everyone else. We expect to be entertained in the middle of an environment in which no one, no matter how skinny or blonde or popular or perfect, can expect to be safe and happy for long. If our television program is going to do anything besides lie to us about following our hearts and happy endings, we’d rather it at least didn’t mean it.

So Glee gets sneaky about it. They give us Bryan Ryan, a Special Guest Character who gets an entire episode devoted to what it is to be a closeted gay American without every actually showing any icky attraction to men. They delve down into layers of nuance and complicated human relationships and the terrible compromises we make and they talk outright about being closeted and cutting yourself off without ever pulling a visceral homophobic reaction from the audience because Neil Patrick Harris (and can we talk about that casting choice?) kissed a guy.

That same episode we have Artie, our wheelchair-using character, learning how to tell people that he doesn’t care about his legs, he doesn’t need to be fixed, he’s got other things he’s worried about. Difference is, he’s not some sort of coded metaphor. You see his chair before you see him. And so all the other characters (and the audience) see is a poor, suffering boy (in a wheelchair, just a cripple bound to his chair) miserable because he can never achieve his dream of being a dancer. Artie spends the entire episode negotiating what all of that means, and how to make himself heard and believed through all the other noise, while, yes, getting a little sad that he can’t just get out of chair and make the entire problem go away. But the episode is called Dream On, and being able to walk doesn’t change the people around you.

The point these two intertwined storylines make is that it doesn’t matter how badly you want people to hear your own voice, they much prefer the dream they have of you in their heads. It’s an entire episode, on the heels (and a continuation) of the similarly-themed Laryngitis, devoted to showcasing that on every level, from casting to costumes to musical numbers to the actual lines delivered, Glee plays around with metaphors and story-telling and scale and variations on an idea and performance versus experience to look at how humans negotiate the space around each other.

(There’s very little joy in the Glee Club, sometimes, if that gives you an idea of what they mean.)

We start out with the writers taking a complicated, unjust experience, stripping away the salient, fundamentally other part of it, and delving waaaaay down into it and all its complexity and nuance. It becomes a story about the fucked-up ways people treat each other, and the fucked-up consequences that has. The audience, to some degree, gets it, and likes it, because it’s not ANGRY, it’s not about TEH GAY, it’s not scary and divisive and other. We don’t have to change the way we treat whole classes of people because of this now, do we?

(I think the point being made is that yes, we do, but it’s entertainment so if you don’t want to hear that, you won’t.)

Probably the most frustrating part of Glee is that the show focuses on universal problems of human relation, but it’s aired in a world where only a few characters out of the oversized cast are universally regarded as human. The only two characters played and seen straight-away as human, right from the start, are Finn and Will. Besides being straight white middle class males, they have two other very important, tightly-linked things in common:

1. They’re allowed to rage.
2. They don’t hurt people on purpose.

Kurt (gay) snarls in his songs, Quinn (teenage pregnancy) yells that she’s furious, Puck (juvenile delinquent and Lima Loser) explodes and punches people and gets sent to juvvie, and those are all Bad Things. Finn kicks over a chair, Will terrifies his wife, and those things are fine. Those things are natural, healthy, human reactions to the (not-) people around them being awful. Kurt and Quinn and Puck learn to be angry quietly, to smile through their teeth, to take names and social security numbers and sometimes just to wait. Finn and Will are allowed to feel, and show, their hurt.

Their rage is safe and predictable and about socially sanctioned things and won’t ever shake anything up. Kurt, Quinn, Puck? They might hurt someone’s feelings.

They might make someone uncomfortable.

They might ask someone to risk something.

Kurt and Quinn and Puck can hurt people just by breathing, just by being there, and it will always, always, be deliberate. Finn and Will only ever hurt people by accident, and that’s the catch. Finn and Will are people. Good people. Good people don’t, can’t hurt anyone, and since Will and Finn are Good, and since they didn’t mean it to hurt, didn’t even know it could, it doesn’t.

(They’re not like my student’s father, so obviously intent on destroying people, and so their actions have no consequences. They’re good, and if we feel hurt by them, then that’s our fault, and if we argue, then we’re bad, bad people, trying to sully their goodness. That’s just not who they are.)

Isn’t that a cool trick?

(That is the real reason my phobia of lifting my arms, and my student’s near-institutionalization, and so many other things, Don’t Count—what was done was never meant to hurt, and the people who did it don’t hurt, that’s just not who they are, the whole thing is really just better off forgotten, it doesn’t ever need to feature, it doesn’t (we don’t) count.)

But what Glee does such an uncannily good job at showcasing is just how, exactly, anyone can make anyone else Not Count, and what that does to all involved. Simultaneously, it fleshes out people we see first through Will and Finn’s eyes—because we can’t see not-people through their own eyes—and turns them from cheap and easy stereotypes into painfully real, immediate, people. The process is messy and long—two seasons in and it’s still not quite complete—and it’s complicated by the fact that it happens with an audience going through the same process. People laughed at Bryan Ryan’s quips and cried at Artie’s tears and didn’t quite put the pieces together. The cast donned shirts stamped with their shame and sang about baby I was born to survive, and it wasn’t quite obvious enough to change everything.

(It’s entertainment, it’s not supposed to mean anything, and it has to be packaged such that people can ignore the real parts if they don’t want to see them. It’s not allowed to count.)

But a few of us get our words and our stories back, and if they were any more obvious about it, it wouldn’t work at all.

It’s (we’re) all the same, you see.

Disabled, Not Different

For a very long time I used to think I was different.

I wasn’t disabled. God, no, I was super good at math and hey, I read the unabridged version of Les Miserables when I was 12! I skipped eighth grade! I would be perfectly fine if people would stop just poking me all the time.

I was just different, they said, and they said it was cool and maybe a little edgy and it made me special and it meant that I was just as good as everyone else. I was different, see, that’s why I didn’t think that I had toes if I couldn’t see them, that’s why I spent the whole hour-and-a-half of geometry seeing how high I could count by 15’s, that’s why I knew when everyone’s birthday was.

No big deal.

I was just different, see, and so I felt things differently from my peers, and different things happened to me, and things had different meanings. I was different, and my world was different. That was okay.

Except for the part where it wasn’t at all.

See, here’s the thing. There is an acceptable margin of difference allowed a person, and an acceptable range of ways to be different within that margin, and anyone who pushes beyond that gets pushed into the Uncanny Valley. People in the Uncanny Valley are neither wholly human nor entirely nonhuman, which means we get the human treatment sometimes, and other times we get beat up until the uncanny parts of us are sufficiently chipped off.

As an Uncanny Valley girl, I can trick people sometimes—kind of a lot, sometimes. So people got really, really mad when they went to sit next to me and I punched them for being too close, because what the hell, that is not what a human does. I was a bad person, tricking them like that.

So I got punished.

When the beating was over, when they let go of my wrist or told me I could maybe come to the next party, I was always, always offered an out. There is a list, somewhere, of the acceptable ways to be different, and they would suggest that maybe I could fit myself safely into one of those boxes, chip off the bad edges off myself on my own, and be a proper human. Give them a break, you know. Help myself out.

I would like the record to show that I tried.

I could be gifted, right? I took graduate courses in psychology at Stanford during my sixteenth summer, that should seal the deal—but none of the other students had their A’s dropped to B’s solely because they hid under their bed, wracked with panic attacks, instead of going to class.

I could be a theater nerd, surely. I loved to mimic people, I loved plays and theaters, I could sing, I stage-managed like no one else—but you had to know how to control your body on stage, and maybe more importantly, you had to participate in the massage trains in the green room, so being in theater was immediately out of the question for me.

I could be a manic-pixie-dream-girl, right? That was like the epitome of different, and I was so very, very different. I only wore skirts, and I said strange things and repeated things over and over and scratched patterns out on my skin. Surely I just needed love, friendship, someone to save me who also needed me to save them.

I discovered, though, that manic-pixie-dream-girls don’t bang their heads, and when someone touches them they know how to let themselves be touched. They see the world differently, but it’s an endearing and quirky and acceptable and unremittingly real view, not one that is confused and forgetful and blurred and above all fleeting. They use words differently, but they use the same words as everyone else and they seem to mean the same things.

People like manic-pixie-dream-girls. Some people even like nerds, and gifted students, and kids who spend their Saturdays painting sets.

People didn’t like me.

They were so nice to me, carefully working at smoothing out my edges until I fit into one or another of the acceptable differences they offered me, and I was so ungrateful and selfish and obsessive, not cooperating with any of it. Where did I get off, saying I wanted to kill myself, failing tests, waving my arms around, saying things that just no one says, looking over their shoulders instead of into their eyes? Fine. If I didn’t want their help, I wouldn’t get it. See how I liked it then.

See, sometimes being different isn’t the best thing about you. Sometimes it isn’t allowed. Sometimes, if you grab onto that label too much, it gets ripped away from you. Sometimes, if you say you are different too often, you get to hear, over and over and over and over again, how everyone is exactly like you.

So you get mad, and you take them at their word, and you start asking awkward questions. Were they nicknamed Droolia? Did they get sexually abused when they wiped the drool away on their collar one too many times? Did they get denied medical treatment for their broken wrist because they didn’t cry enough to be in real pain? Can they look at a person’s entire face at once and see it all? Do they come home from school and lie under a blanket for two hours until their head stops echoing from the hallways? Do they know how to mix 50 mg of liquid Zoloft into 8 oz of orange-pineapple juice so the taste is perfectly hidden? How many friends do they have, and do they see any of them outside of Honors English? Can they scream, or do their vocal cords paralyze at the first flash of any significant emotion? Have they ever completed an entire test in physics perfectly, except for the part where every number—every single one—written down on their work papers was different from those given on the exam?

Oh. It turns out that was just me.

I guess I really am different, then.

No shit. Get out of here.

The moment when the Uncanny Valley mask slips and people realize you really are just hideously outside the acceptable range of different is not a fun one. It stays very Not Fun. It extends past a moment and into a lifetime. The question is asked: if you’re not even allowed to fake being an acceptable human, what are you?

You’re disabled.

I’m disabled. I’m not different at all, really, I’m much, much more like you than anything else—but that’s not seen, that’s not allowed, and so I am disabled. My Autism is not a cute, acceptable, or advantageous difference. It’s a disability. I was not born configured for this world, and it fell to me to make up that difference, and there were so many places where I could not close the gap.

I am disabled, and I will never, never be content to call myself “different” again. When you are different it’s okay for you to not quite meet up with the rest of the world here and there, because most of the time, when it matters, everything syncs up. When you are disabled you don’t have that luxury. When you are disabled you have to prove, over and over again, that you are a real person—and then someone forgets, or you meet someone new, and you have to start again.

That’s not a difference. That’s a disability.

My name is Julia and I’m Autistic. I’m not different; I’m disabled. I can say it now.

But then, I didn’t have much of a choice.