Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, October 4, 2013

The Unedited Speech

Diversity Week. I "spoke" at it yesterday by way of having someone else read what I wrote. Here's what they read.
Today, you get the long version.

Trigger Warning: Descriptions of ableist bullying, invalidation, r-slur (censored.) 

Hi. My name is Alyssa, and I can't be here today to talk to you because I'm studying in China, and I don't know how to teleport. That's OK, though- we have Internet, so I can write something and send it and someone else can read it for me. That might be better- I stutter when I read out loud.

I'm talking (writing) today from diversity. I'm white, if a bit ambiguously so. My family members are all Eastern European Jews, and I look like a pretty average Russian Jew. Most people don't know what Russian Jewish looks like: I've been misread as Latina, Mongolian, half Han Chinese (they never said what they thought the other half was,) Indian, and Xinjiang. I get read as a woman, which can be interesting. Trying out for a bass solo in front of the whole choir was fun, even with the whole choir already knowing that I typically sang tenor second. I'm genderfluid, though I pretty much stay within androgyne. That's a decent sized area of gender identity. People never realize this, since it's assumed that we are either men or women, never somewhere in between, and masculinity is a sort of default. If I have even a little bit of femininity, like my long hair, I will be read as a woman. I'm asexual. People talk about having a sex drive. I get confused. Hunger is a drive. Once it gets through my cruddy body awareness, I can't ignore it. Pain is a drive. Thirst is a drive. Desire for sex? I understand intellectually that it is a drive for many people, but for me? It's just not. I'm biromantic- I can have romantic attraction to people of my gender or to people of other genders. That doesn't mean I want to have sex with them. And... I'm Autistic.

I don't know if anyone's head just perked up, if anyone wants to tell me that surely I mean I have autism, or that I'm a person with autism. I don't need to know how many of you are thinking that, because I'm on another continent, asleep! But no, I definitely do not mean that I have autism or that I'm a person with autism. I'm also not a person with Jewishness, nor do I have tenor-secondness. Those have less to do with my identity than the way my brain is wired, though, say those before I said I was a person with autism. Also, telling me what I should call myself? That would be rude. Believe me, if a Disabled person is using identity-first language (that's “Disabled person” or “Autistic person” or “I'm Disabled” or “I'm Autistic” or really anything like that,) they've already heard all the reasons in favor of person-first language. Many times. Each.
But I'm not here to tell you all the reasons I prefer to be called Autistic. I'm writing from China and also from diversity. I have stories.

When I was in third grade, some advanced students had a separate language arts class. I was in it. I didn't know that it was more advanced because no one told me and I don't figure out that sort of thing from context. This class was in a room with a slanted roof. I was one of the tallest kids in the class. I was also in one of the seats where standing up all the way meant I would hit my head on the ceiling. I hit my head on the ceiling every day. Those of my classmates who were tall enough to hit their heads on the ceiling stopped after about a week. I didn't. My record? Stand up, hit head on the ceiling. Kneel down to grab books, hit elbow on chair on the way down. Hit back, then head on bottom of chair grabbing books. Hit back on bookshelf sitting up. Stand up- hit head on ceiling. Realize I forgot one pen on the ground. Kneel down to grab it- hit elbow on bookshelf. Sit up properly, hit head on the bottom of the table, then hit back on the bookshelf again. Teacher hits me on the head with a book. Stand up, hit head on ceiling. My main classroom teacher was used to my coming back from the special class with various sore spots. She never did anything.

Also in third grade, they wanted us to memorize our times tables. Despite being top of the class in nearly everything math, despite having been the only person to get the math challenge completely right one week, I was one of the last people to memorize my times tables to the teachers satisfaction. She made fun of the way I jumped and flapped when I took my test, just like my classmates did. They called me a r****d for it. Yes, r****d is a slur.

When I was in fourth grade, they sent me in for testing for two days. No one told me why until years later. The fact that I was sent back with no diagnosis, but with the doctor having wanted to discuss some “findings” that were not being sent to the school was evidence that the guess of “autistic” I'd already made couldn't possibly be right. I was sent back with what amounted to “gifted kids are weird.” That was true enough, but why are gifted kids weird? Maybe because a lot of us are also autistic?

In sixth grade, “r****d” came up again. I don't remember why. Being the only one who was still jumping at the bell more than a week after school started may have been relevant. It might have been the way I jumped and flapped when we played “Around the World.” Maybe it was my complete inability to get organized. My locker was always a mess, and I couldn't open it. I stuck a pencil in the lock so I could open my own locker, which got me in trouble because we weren't supposed to do that. Since I was smart, my inability to work the lock properly was my fault. Clearly I just didn't care. I couldn't keep my locker organized. They said that was because I didn't care too. The idea that I couldn't keep something organized without help wouldn't occur to them, because I was smart and that meant I didn't need help.

That year was also the start of my homework problems. Keeping track of what homework needed doing, remembering to do it, knowing where it was once I did it, the whole deal. Or, as others would put it, I was lazy. I wasn't actually lazy. I just have nothing resembling typical executive functioning skills, and no one would teach me to keep organized in a way that worked for me because I was smart and should be able to figure it out.

Do you get the idea? That's what indistinguishability from one's peers means, and that's what being smart enough that no even one figures out you're disabled (so you're clearly indistinguishable!) means. It means no one ever gives you the help you need because you're smart and you can figure it out. It's also the goal of most therapy for autism. It's a bad goal.

In high school, I was all kinds of visibly weird. I was the only person read as a girl at my lunch table. I was absent more times than I wore pants. (Yes, I know, androgyne and skirts sounds like a strange combination. Perhaps it will make more sense when combined with bound breasts? It might not be the exact mix people think of, but I did mix masculine-coded things with feminine-coded things. That's all androgyny means.) I made almost all my own dresses and skirts, because the ones in the stores were too short or too tight or too boring. My shirts were either men's or homemade. I was the slowest person on the cross-country team for four years. I joined tenor bass choir. I was the only theoretical girl there, too. I actually made a joke about the whole gender thing there once, not that anyone picked up on it. It was about uniforms: “For the purpose of this group, what gender will I be at 7:30pm tomorrow?” I wanted to know if I should wear the men's uniform or the women's uniform for the next night's concert. They said it was up to me. I wore the men's uniform. I was also the only theoretical girl on the Ultimate Frisbee team. I say theoretical girl because I wasn't actually out as nonbinary, and I'd still have had to choose one for legal stuff like school paperwork. I still go with female for that, since it's what I was assigned at birth and it's not as if I'm a man either.

And yet... when I talk about diversity? Even though I break way more gender stereotypes than I do autism stereotypes, no one ever tells me how I'm overcoming my gender, or how I must be recovered from femaleness. Sometimes they say I'm overcoming sexism, which is different. No one ever told me I was an inspiration for it. No one says I overcame Jewishness or recovered from Jewishness when I eat bacon. I've not even heard it as a joke, though it's one I might make as a Jewish Autistic person who eats pork and likes to poke fun at the stuff I hear about disability. If I do a thing while openly Autistic, while openly Disabled? Suddenly it's all about having recovered or all about having overcome or being inspiring. It's not about having overcome a whole lot of ableism- discrimination based on disability. It's about having overcome disability. Yeah. No. Not cool. It's quite thoroughly not cool. Like, it's not cool to the point that I have a pre-written speech that I will spring on any organization that wants to bring me in as a Token Autistic (should I say Token Person With Autism?) and talk about how I overcame my autism to do cool things that I do. No, really. I have one. It's on my blog, and I've told people that they can use the frame if they want to, though they should probably change the example stories.

No, it's not the speech you're listening to now. My Token speech isn't for people who might only get one Autistic person on a small panel that's about diversity in general. That's actually pretty good. It's for people who think that one or two autistic people is enough for a whole conference about autism, or that one or two disabled people is enough for a whole conference about disability.

The way it goes is that I thank them for inviting me to speak as their Token Autistic. I use the word Token Autistic, too. I tell them I'm going to talk about how much I'm a success, and that this is to give them hope that their children may be successes too. If they're lucky, their children may even be the Token Autistic at a conference some day, where they will talk about how they couldn't do anything independently as children and now they're successful and it's great. They'll neglect to mention that they still dig their fingernails into their hands hard enough to leave marks, and they won't let you see them rocking. That would make the Parents and Experts uncomfortable, since it would mean that the Token Autistic has achieved success while still acting Autistic. This would be unacceptable, because Autism is Bad. (It's not. It's not. The messages are so there and so loud and so horrible that sometimes even I have trouble remembering that the way I am is OK, but it is. It's OK to be Autistic.)

I go on to tell stories. I did this here, too, but the stories they get are of succeeding because of autistic traits. I point out every single autistic trait I use and keep repeating that I am successful by embracing my autism, not overcoming it. It's still stories because stories are important.

I know stories are important because everyone says they are a reflection. I wonder what it means that the only stories with people like me in them are told by people like me. Does the rest of the world think I don't exist? Or do they just wish I didn't exist?

When I comment on this, they say I am not like those people I don't see in stories. They don't see me as Autistic, which makes no sense because if they don't see me as Autistic, how do they know I'm Autistic to need to tell me they don't see me that way?

I finish telling stories, and then I explain exactly why I am like their children in the ways they don't want to see. I even use their Expert Pathologizing Words. I point out all the reasons that being a self-narrating zoo exhibit is horrible under the guise of being one myself. It's a trick, because ableism is the thing I need to overcome, not autism. Ableism is the thing that I try to educate people about, in the hopes that they'll enforce it less.

It's also one of the scariest things to fight, because when you admit to being disabled, a lot of people decide that either you are Making It Up or you are Not Really A Real Person. If you're Making It Up, you're still a person, but you're not allowed to need help. If you're Not Really A Real Person, you get help, but also abuse in the name of therapy, and people think that it would have been better to abort you than to let you grow up to be the Burden that you are, and you can't understand how hard it is to deal with People Like You. If you understood, you would sympathize when the parent of Someone Like You snaps and kills their kid.

That's why it was so scary to lend my Chinese roommate my copy of Loud Hands: Autistic People Speaking. She's studying English, and she's been looking for a book with simple words. Loud Hands has simple words and is meant for adults, not a combination you see much, and it was terrifying because handing it over meant admitting that I am one of Those People.

It's scary because the people who understand are so rare. It took until two weeks ago for someone to finally decide that they should teach me how to study independently and how to find a way to get my homework done properly, rather than saying I'm smart and so I should be able to figure it out. It took until I was twenty-one years old for a teacher to understand what I needed- how many people do you think fail out before someone gets it? That's what disability means. It means all kinds of challenges, and the actually bad ones generally boil down to some variation of “people don't understand” or “people are horrible” or maybe both at once.

I didn't get where I am by overcoming my neurology any more than I did by overcoming my asexuality or my androgyny or my Jewishness. I think you'd laugh if I started talking about overcoming my whiteness, that or throw something at me. But I'm not allowed to be Disabled and a Real Person, so I must have overcome it. Right?

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