Just Stimming…

I’ve told this story before.

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

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

I would never feel safe again.

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

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

(Inside, if not out.)

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

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

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

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

They can be wrong.

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

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

It’s terrifying.

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

So I am never safe.

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

Maybe theory of war.

Glee is a show whose buzz is owed almost entirely to manufactured controversies. Unfortunately, this latest one is invoking autism, and as an autistic person and fan, I’m weighing in. Again. I’m not f-locking. I will delete nasty comments, derailments, and personal attacks, all of which I’ve already dealt with today. For those who were lucky enough not to know: autism politics are vitriolic. Nasty stuff. Wonder if the writers know what they’ve stepped in.

So! Glee!

There’s this character, Sugar, who describes herself as having “self-diagnosed Asperger’s, so I can basically say whatever I want.” Of course, she does a really, really bad job of crip-face, and her last line is a furious “NOT ASPERGER’S!” There are a couple different takes on why she says it. I think she’s saying she doesn’t have Asperger’s. Others are saying that she’s saying that the particular rant she just gave had nothing to do with AS. Either way, actual autistic people can’t pick and chose, and she’s very, very obviously not autistic.

I think she’s brilliant. She makes me see red, she feels like a punch to the gut, but she’s brilliant.

Now, before I get into it, this is Glee, so let me just clarify a couple of things:

Anyone who thinks that Sugar’s actions won’t be addressed hasn’t been paying attention to how the show works for the past two years. Anyone who thinks that her plot has anything to do with actual autism, or the issue of self-identification in the autistic community, is putting assumptions into play that the show has never expressed an interest in. And anyone who thinks she is written as actually autistic, as some parents have been suggesting, has some serious ableism of their own to unpack.

Finally, since this conversation is also drawing in a lot of people with very little knowledge about the show: anyone who thinks that Glee trades in stereotypes and makes jokes at the expense of minorities and that’s all is really missing out on some incredibly nuanced stories, and probably won’t be able to follow a word of this. I’m not interested in defending the politics of Glee
here. If you think that Kurt’s a flaming queen and Artie is a prop and that’s that, then I really don’t have time to engage with you right now or defend something you’ve already decided is indefensible.

But! For those curious as to how someone who is autistic, into Glee, and really into analyzing disability politics on Glee is thinking about Sugar, read on!

There are three basic questions about Sugar. Why couldn’t she just be (another) bitchy character? Why is she faking a disability? And why is that disability Asperger’s?

The first (why they couldn’t just make her the rich, bitchy, and annoying girl) is the easiest.

Because this season Glee has nine, count ‘em, NINE kids whose characters and plotlines involve passing in some manner. Three of these have to do with disabilities they can’t hide. (Also, cool, it’s 3 for race, 3 for disability, 3 for sexuality.) And then we’ve got Quinn’s dirty laundry, and Emma’s everything, and it’s all kind of the same. All these characters are struggling with parts of themselves which they have, or haven’t, learned to accept after season two–and for most of them, they’re discovering that acceptance isn’t enough. There are still other people in the world, and there are still consequences.

So the utter and complete and raw awfulness of Sugar doesn’t come from her being a bitchy and entitled rich girl who can’t sing and isn’t used to getting her way. It comes from her strutting into a safe space these kids have created and pretending–and not even pretending very well–to be something she’s not, something she can turn on and off at will, for fun and profit, at no cost to herself and every cost to them.

She’s not going to get away with it. She already didn’t get into glee club.

This season of Glee is already extremely and obviously political. They’ve been building up to it for two seasons, setting characters like Mercedes and Mike and Tina up, normalizing Artie and sneaking in Brittany and turning Becky into a full and autonomous character, and everything they’ve ever done with Kurt and Blaine and Santana. Sue Sylvester was compelled to run for congress because of cuts to her sister’s medicaid. I still am not over that. She might never mention it again, but since when has that ever been something that a comedy cared about? And I’m at an advantage here because I know spoilers, but, trust me. It’s not going to stop any time soon.

But it’s not just political in the sense of “Sue Sylvester is running for congress, everyone hide.” It’s is Brittany going to graduate, it’s Santana doing whatever Sue wants because Sue implied that she’s not as closeted as she’d like, it’s Kurt and Blaine auditioning for the same role and not kissing in public, it’s Mike telling Sue Sylvester she’s being offensive, it’s the kids not even pretending to respect Will anymore and so, so much more.

It’s about living with the consequences of being who you are, and letting audiences see that. It’s also, quietly and sometimes so loudly, about changing the rules.

Sugar is a girl who has a very poor grasp on all of this, and no regard for consequences because she’s never had to live any. She’s the natural foil.

As to why she is written as faking…

I have four short little stories for you all.

One of them is about my brother. Well, my brother and I–we’re both autistic, and neither of us can pass for shit. We might not be identified as autistic straight away, but neither of us passes for normal or acceptable or typical, not even close. Now, when I was in high school lo those many years ago, I survived a lot of abuse which is really not the point here. I went to public school though, and he’s at an excellent private school–a lot like Dalton, actually, complete with abandoned out-buildings–with accommodations and is in AP US History and music theory and doing very well. And although we’ve had a tumultuous relationship, I had hoped that maybe the worst of his bullying was over, that he would escape relatively unscathed.

Our sister (neurotypical) started there a couple of weeks ago. She came to me on Thursday to tell me that I couldn’t have been more wrong.

It’s bad. It’s really bad. It’s so bad that my sister, who is just starting to notice the looks we get in public and shares no classes with him, picked up on it immediately. It’s so bad that my very socially-conscious teenaged sister is ready to go to the administration and make a scene.

It’s also very, very different from what I went through.

One of the girls harassing my brother self-identifies as having a different mental disorder every week. This week it was, apparently, Asperger’s. She’s been telling my sister that he really needs to get evaluated, “talk to someone,” “take some pills.” She’s been spreading it around.

For the record, before my brother takes his pills in the morning, Mom has to sit with him and prompt him through every bite of his breakfast. He has really, really bad ADHD, and he forgets to swallow, or he wants to sing about his plans for the day, or he needs more orange juice but on the way to the refrigerator he gets waylaid trying to rearrange the dishes on the counter.

My sister overheard a group of upperclassmen wondering if our brother had ADHD last week, because he’s just so much and so obnoxious.

“He does, so fuck off,” she snapped.

“Wait, really?” they said.

That’s the second story.

See, self-diagnosis and armchair-diagnosis is such a common thing now at this school that the idea of anyone actually having any of these disabilities, of maybe possibly god-forbid being affected by them, is something that simply does not occur to the people doing the speculation. My brother is just obnoxious, see. He doesn’t have a brain that requires a cocktail of expensive, semi-effective, and damaging drugs to hold still for six hours a day. He’s just annoying. People with Web M.D.’s from the University of Google bully him because…

I don’t know why. I don’t know why disabled people seem to trigger some sort of xenophobic kill-switch in other brains. Frankly, I don’t want to. Too many memories.

There are some things I do know, however. One of these things is that it is very, very common and popular and accepted in our society at large to say things like “I’m so OCD,” or “that chick must be bipolar,” or “oh that’s just my ADHD showing” or “I just feel so depressed some days.” It’s not okay to say those things when you actually have that disability–the number of times I’ve been scolded for mentioning that I’m autistic is too high to count. But if you don’t have a disability, you can appropriate that label to explain away and laugh off your personal failings all you want, no big deal.

There’s a lot packed into that last sentence, actually. I built it very deliberately. One of those things is the fact that we still, as a society, have not moved past the fact that a mental disability is really just a fancy code for not trying hard enough. Another is the idea that people who can’t try hard enough are jokes. And the third is the philosophy that health and morality are actually the same thing.

The dismissive, flippant way our culture talks about pretending to have mental disabilities is founded in some really ugly rhetoric. It has some really dangerous consequences for a lot of people. But it’s just so cool, so fun, so quick, so easy to say “we’re all a little autistic,” and I should stop taking everything so seriously, yeah?

Let me put it another way. The most common reaction I get to mentioning my autism is “don’t put yourself down.” A close second is “…but I like you.”

(A third involves bruising.)

That’s the second story. The third story involves teenagers, and an increasing number of adults too, looking at all of these messages–diagnostic labels just mean you don’t try hard enough, health is morality, people who don’t–there is no room here for can’t–try hard enough are jokes–and taking them to their logical conclusions. The logical conclusion is very, very simple. They have ADHD because they sometimes fall asleep in class after lunch and they don’t like doing homework.

My brother doesn’t, because he is just a failure as a human being.

The fourth story is about this marvelous TV show. It features ground-breaking and award-winning portrayals of two characters with developmental disabilities, as well as a character with OCD. During a related movie, a fan was featured with a diagnosis of Asperger’s. The other thing to know about this show is that its creators take their source material very, very seriously. Oh, not the physical location or even the laws of physics, no. But the emotional weight and impact of things, absolutely. It’s one of the most honest shows on air in that regard. This show is very, very good at showing what things, including disability, mean for the people living with them. In fact, it’s kind of what their third season looks like it will be about.

It’s also a fundamentally political show embarking on a very noisy season. And it’s chosen to show the people bullying my brother, and the people causing so much harm to disabled people every day with flippant comments, in a negative light.

Which brings me to the last point. Why is Sugar choosing Asperger’s, specifically?

Because it’s getting this level of response.

Because people are used to “I’m a little bit OCD,” and “I think I might have ADHD sometimes.” That’s completely and totally acceptable in most circles. It’s hard to make a point about something unacceptable if no one notices. Oh, Glee does that all the time, but they’re being a little less ambiguous here. They’re not going to spend a season and a half developing a storyline about overcoming casual homophobia–they’re slapping us in the face with a character’s casual ableism.

It’s a very deliberate and political choice.

I applaud it.

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!

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.