29 April, 2010

tl;dr: a baby triumph

So I'm sort of bad at figuring out how I feel about things, or just how things are, objectively. This is probably due to growing up with gaslighting although I also think that not being able to identify your feelings is supposed to be normal for people with ASD. Although maybe it's normal for people with ASD as a result of gaslighting. Anyway. I recently said to someone that I can never tell if I'm going too hard or too easy on myself. And that's been a major issue especially for the last term, because I've been extremely fatigued and extremely sensitive to stress, with both those things feeding into each other, combined with the fact that of course I think it's my fault for being so lazy and letting myself get away with things. That last fact means that it's really hard for me to just state that I'm having trouble and not doing things wrong on purpose. And this is tied into my general inability to speak up about anything.

One small piece of the problem is my psych class. We're allowed to take the exams on our computers, whenever we want. This sounds like it would be good, but I got so anxious about the first exam that I took it at three in the morning without being done studying, just because I wanted it to be over. I got a 28% and so, in combination with other factors that are making me tired and/or meltdowny, I'm having to freak out about doing well enough on the other exams to get my grade up to a pass.

Then my professor found out that people had cheated on the exams, and told us that from now on we'd be taking the exams in class. I found this out last week, right before the third exam, and it made everything worse. I don't know how to start explaining the problems I've had on tests and exams my whole life, but basically I find it really hard to tell what the questions are asking. It makes me stressed out enough that it takes a lot of energy to answer them at all; by now I've figured out that I should just write way too much rather than risk writing too little or writing the wrong thing, but it takes a lot of effort to get all those thoughts out.

I really enjoy the experience of typing on the kind of computer I have now (scroll up if you don't remember what kind of computer I have). I love the noise and the feel of the keys and it makes it a lot easier to get out the things I have to write because I'm getting sensory reinforcement. It's different from writing by hand and it's better than any other kind of computer I've had or used.

My Amateur Prediction of What Will Happen

I am having huge amounts of trouble tolerating any frustration or discomfort + I have trouble understanding, remembering, and talking about certain kinds of science that are covered in this class + my normal test-taking problems - the comfort of typing on my computer = total mind explosion and a grade I can't afford.

Enter two people who I really, really love.

1. Ari Ne'eman. Ari is a person I talk to a lot and a lot of the time we have the following conversation:

Amanda: An aspect of one of my classes is really difficult for me as an ASD person./Someone I know said something offensive about disabled people./I think that one of the kids with disabilities I know is having such and such problems and their teacher isn't responding to it.

Ari: You should talk to someone about that.

Amanda: I can't do that.

Ari: But

Amanda: NO

Ari: But

Amanda: NO

(change of subject)

Ari isn't trying to make me do things I don't want to do; he just has a very different way of thinking about things. Basically, he flunked learned helplessness. His first reaction to this kind of stuff is to do something, and I don't think he has this reaction on purpose, but it's ended up as a situation where I'm like a mountain being eroded by the ocean (Ari is the ocean in this simile, if you were having trouble keeping up). He's not intentionally chipping away at me, but his presence in my life gives me a different idea of how a young disabled person can react to things.

In this case the conversation went like this:

Amanda: I'm scared I'm going to fail my exam because I like taking it on the computer and I don't think I can stand it without the computer.

Ari: You should get permission to take it on the computer as an accommodation.

Amanda: How is that an accommodation?

Ari: It reduces your anxiety.

Amanda: I don't have anxiety.

Ari: Are you serious?

(Ari reminds me of some things I have done. For example, remember how I took that exam at three in the morning without being done studying. And some other things. I conclude that I possibly have anxiety.)

Then I emailed my professor asking if I could take the exam on the computer. His reply was ambiguous and I thought he might be saying no. Ari said that if it didn't work I should go to the disability services office.

2. I have been well-disposed to this professor since he handed out a form on the first day of classes asking if we had any "special needs, quirks, or homicidal tendencies." I thought this was cool because it made disability a casual, light thing that was important but not scary to disclose. Also I just think he's weird, which is good. I only go and talk to professors who are weird, because by the time things are bad enough for me to talk to professors I no longer have the ability to act like I'm not weird, and if they're not weird they can get mad at me.

So yesterday I walked into his office and said, "Is it okay if this is a meeting about me being stupid and crazy instead of a meeting about the material on the exam?"

And he said, "Yes."

And I sat down and explained that I have autism but lately I have it worse. And that I'm having--"Can you have boring panic attacks?"

"Boring panic attacks," my professor repeated with a bemused expression. "Well, if you're having them, I guess you can."

"It's like--I feel really bored and distracted but then I realize that physically I feel like I'm scared. But the main thing is, I understand if I can't take the exam on a computer but this thing happens"--and I explained about not being able to tolerate things and about how the computer makes it a little easier. I was straightforward about sometimes wanting to scream, and my professor looked pained.

"Well," he said, "then...I can drop off a copy of the exam at the psych office and you can go into another room with your computer and open up a word processing document and don't open anything else. I think you should be able to print it out in the computer lab, but if that doesn't work, email it to me."

"Is--does this make things a lot harder?"

"For you or for me?"

"I mean, for you?"

"It's a very small change," said my professor. "If it helps you--"

Chicago Style is Oppressing Me

You may recall that I sometimes use "chicago style is oppressing me" as a tag related to academic problems I have. I'm making fun of myself but I also mean it. I do think that rigid ideas about how to do things can be extremely damaging to someone like me. For example if my professor had a normal reaction to the weird thing I said when I first came into his office, that would have impaired my ability to communicate with him. Because he didn't care that much about me saying something weird, or wanting a weird accommodation, I was able to take my test in an easier way. I wasn't prepared enough for the test, and I don't think I did well, but I did a lot better than I would have if I had had to take it on paper.

I know this isn't a big deal but it's a huge deal to me. I'd like to thank Ari for making me a little different, and I'd like to thank my professor for meeting me halfway, because I'm not different enough to fight yet.

I know much more than I let on



yeah, pretty much

ETA: Zoe said I should add a warning because this video has strobing. It gets really bad at about 1:57.

28 April, 2010

Benjamin McLatchie

I'm too tired and can't write about this in much depth, but yesterday a guy shot his 22-year-old son and then shot himself.

It seems like usually when a person kills their son (or, you know, anyone), every article about them isn't bending over backwards to try to excuse away what happened. Unfortunately for Benjamin McLatchie, he was a person with autism, so he doesn't get to be written about as a guy who had something terrible happen to him. Instead all the articles are about how hard it is to be the parent of someone with autism, and they quote parents of people with autism talking about what a hard time Benjamin's father probably had.

I'm sure Benjamin's father did have a hard time. I feel sorry for him like I feel sorry for Andrea Yates and anyone else who experiences the kind of mental illness that would lead them to do something so horrible. But he did something bad to Benjamin. Something bad didn't happen to them. Autism didn't do this. It's unfair to Benjamin to imply that this naturally happens to people like him, as if he somehow deserved it.

27 April, 2010

This is part of a larger discussion so maybe start at the beginning, but I really really love this comment and its continuation:

Who is the "we" that is going to move on?

I don't want to appropriate someone else's feelings and the situations in which I feel this way are very different--but I am extremely grateful for this explanation of why explaining isn't always good enough.

25 April, 2010

Pop songs are so much better at saying things than I am

Seriously, isn't this AWESOME? I've liked it for a long time but it just occurred to me to take it in a particular way.



This is my face
Covered in freckles, with the occasional spot and some veins
This is my body
Covered in skin, and not all of it you can see
And this is my mind
It goes over and over the same old lines
And this is my brain
Its torturous analytical thoughts make me go insane

And I use mouthwash, sometimes I floss
I've got a family and I drink cups of tea
I've got nostalgic pavements and I've got familiar faces
I've got mixed-up memories and I've got favorite places

And I'm singing uh-oh on a Friday night
And I hope everything's gonna be all right

This is my face
I've got a thousand opinions and not the time to try to explain
And this is my body
No matter how you try and disable it, yes I'll still be here
And this is my mind
And although you try to infringe you cannot confine
And this is my brain
And even if you try and hold me back there's nothing that you can gain

'Cause I use mouthwash, sometimes I floss
I've got a family I drink cups of tea
I've got nostalgic pavements and I've got familiar faces
I've got mixed-up memories and I've got favorite places

And I'm singing uh-oh on a Friday night
And I hope everything's gonna be all right

repeat ad infinitum, since this is a pop song

(By the way thanks for stroking my fragile ego, I think I was feeling about six years old when I made that post. Now Todd has explained to me that I can get sitemeter so I don't have to ask.)

22 April, 2010

Stimming people

I'm a stimming person. It's one of the things I hate the most about myself.

It's also one of the deepest things in me and one of my easiest ways of loving and understanding people. I like meeting severely disabled people and being at a loss as to what they are feeling, and then being able to notice what kind of stimming they are interested in.

My friend Mike, who I used to see a lot and now don't see very much and probably will see a lot again--Mike set me on the path of being deeply altered, and it's sad because I can never explain it to him, not just because he maybe doesn't have the words, but because he doesn't understand the hate. Mike lives his life with a completely unselfconscious relationship to his stimming. It is just his body.

I hate the way I walk when people can't see me. Sometimes I get caught because I didn't realize someone was there. I also hate the way I walk when people can see me. My walk is the walk of a person who's terrified of running, jumping, bouncing--it's terribly, leadenly stiff, like my joints are made of wood.

At the school where I interned I remember (I think I've mentioned it before--I think about it frequently when I'm walking) this teacher grabbing a boy by his shoulders again and again, trying to get him to walk stiffly instead of bouncily. He couldn't keep it up and I couldn't not see it as violence. I am not very political or very educated or very confident, but I believe in stimming. I don't want people to be the way I am; I want them to be the way Mike is.

It's hard to even explain to people the way I feel about the way I move. First of all, it's hard to even show it to people at all. But then even if I can get across what I'm talking about, it seems like it's just an action, it seems like something anyone could do, and it's like--what are you talking about? Jumping up and down has ruined your life? You don't think you can ever get married because you turn around a lot when you get excited?

Then it's like something I don't even know how to say. I'm scared. I'm so scared of looking a certain way, because some of the people who can't turn it off get hurt for looking like this. Looking like this, not acting like this--being like this, not looking like this, I mean. I like calling myself a stimming person because it's not an action, it's a kind of person. It's a kind of person I still am, the deepest thing.

21 April, 2010

Leaning

Even though I'm a cashier I don't handle money. I work at the dining hall so I just do things with people's meal cards. I used to cashier at a place where I handled money, though. And what was the most annoying thing in the world was when people would pretend they were doing you a favor by giving you exact change and standing there counting a million pennies. It's not the pennies. It's the way they say, "Let me see if I can get some pennies for you."

One time a woman stood there looking embarrassed and saying, "I'm so sorry, this must be so annoying," as she was counting out her pennies and I was just sitting there beaming at her. I loved her so much.

The worst thing about ASD is not ASD or even anything I'm expected to do, but just people's tremendous laziness in not realizing that they're asking me to do stuff that is hard. That this isn't me. I mean--I'm being insincere maybe because obviously I am sometimes asked to do things that are pretty impossible and I have to do them anyway or feel bad about myself when I can't--but I sometimes feel like it would be so much easier if someone would just say, "Hey Amanda, I know this is incredibly unfair, I really appreciate it, you're a trooper."

You know?

With regular people I feel like this:

picture of a guy, Noah, leaning to the right, as I lean in his direction with a bored look on my face.

And you would imagine that this makes me feel like they're better than me and sometimes it does, but sometimes it just makes me hate them and makes me not want to be around people because I'm tired of leaning in their stupid direction all the time.

With people who have more visible or severe DDs, I feel like this:

picture of Noah leaning to the left, as I lean in his direction smiling.

I really like being with people with DDs because I get to lean in the other direction and use parts of myself that are usually a hindrance when I'm trying to lean in the direction of normal people. I also like doing it because there's so much social support for the idea that people with DDs are really difficult to interact with--this probably isn't something I should admit, but it's really nice to suddenly be socially coded as a good person or a person with a special talent, instead of the way I am with regular people, which is average when I'm wearing myself down to the bone leaning over at THEIR EXACT ANGLE. With DD people, if I can lean well enough to have good communication with them, that's a positive thing, whereas with regular people it's a problem if it isn't perfect.

There's a third kind of person which includes some normal people but especially seems to include a bunch of people like me--i.e. passing people. Specifically, passing ASD people.

These people can be your friends. And you can talk to them and sometimes it's not any work. But sometimes it's work because everyone is sometimes work. So sometimes I will lean in their direction (whichever direction it happens to be). But also! Look what happens sometimes:

picture of me tilting my head to the side, with Noah tilting his head and leaning it on my shoulder affectionately--the idea being, this is the only picture where Noah is adjusting himself to me instead of the other way around.

When this happens, it makes me so happy I want to cry and it makes the entire being-alive thing worth it.

(Noah is of course a type three and a trooper for sitting and leaning over with me for such a long time.)

Wait you guys, things are sometimes beautiful

Because people my age are really fantastic at pointing out exactly how much everything sucks, but not how much everything is awesome, I haven't yet written about something that happened to me two weeks ago in my nonfiction workshop.

Basically, in a passive-aggressive move against a kid in my class who made what I took to be patronizing comments about the way I talk, and also just as a result of this totally unbearable pressure that's been building all term because I've been so overwhelmed by school, especially this particular class because so much speaking is required and because it's such a long class, and also because of various classes this term where I've gotten to listen to professors and classmates explaining autism, I started writing an essay about being disabled to be workshopped in class.

I was leery of talking too much about "the movement" because I thought that it would seem strange and radical to people who haven't been exposed to it. I also have very little interest in explaining what autism is or how it affects me. So I started the essay by talking about my psych professor's declaration that "autistic kids want people for what they can get from them, not for who they are," and my non-response. Then I talked about Joe and how I feel that people like Joe are cut off from other people not just because they are nonverbal but because of the huge amount of distancing and othering pity that is heaped on disabled and different people by society. Then I moved out to talking (vaguely) about my identification as disabled and my alignment with disability rights, basically explaining how I feel unable to talk about this stuff in real life, how I feel invisible, how I feel like a disabled person is never expected to be in the room when disabilities are being talked about.

The process of writing the essay was really upsetting for reasons I don't have time to describe and I ended up feeling that it had been a bad idea to put myself in the stressful position of trying to write something like that aimed at my classmates. That's when I wrote sometimes the best self-advocacy is shutting the fuck up and I resolved to bite my tongue through what I expected would be a really uncomfortable workshop and never work on this essay again.

However, the people in my class were incredibly kind and sensitive, by and large did not tell me that they wanted more explanations of autism, that I should think about severely disabled people's parents' feelings, that I should describe my childhood, that people with autism can't talk, or basically anything I was expecting. One kid said, "I think this essay proves your professor wrong." Another said, when asked to give negative feedback, "The speaker ends the essay on a negative note by claiming that she isn't accomplishing anything, but that isn't true--she works with kids and has a blog."

I'm mega late for eating dinner with my friend. But I'm just trying to say I feel extremely different in class now, and better about my essay, and also proud and glad about "disclosing," as LF would call it. This week in class quite a lot of things were wrong with me, and I don't know how I would have been able to stay above water sitting at a desk for three hours if I didn't now feel so safe with my classmates, more free about talking badly, and more able to do stimmy things.

(Also, soon after I told her that talking in workshops makes me really upset, my professor decided to change the form of our workshops so that instead of getting only one turn to talk and being required to talk and being expected to cover very specific things, we are still required to talk, but we get several chances to talk about a few different aspects of the piece being workshopped, and we don't have to talk every time. I don't think she made this change only because of me, but it has made my experience of class incredibly different and I'm much more able to participate well and feel comfortable.)

20 April, 2010

Zoe decided to win at life

Why Glee Makes Me Want to Kill Someone

other recommended reading while I'm at it:

Just Stop It (really old Dave Hingsburger post about trying to get ID people to act "age-appropriate")

I am not responsible for your discomfort (another really old post, by the person who wrote the "Growing Up With Sky" post that I linked in a previous recommended reading)

(I know I need to do a "mental age" tag and maybe do some more in-depth posts about mental age etc. I have a lot to say about it.)

oh wait, edited to add: A Five-Year-Old's Explanation of Autism

AWWWWW

(This is the best day of the year because it's the day that everyone else thinks and talks like me.)

17 April, 2010

The harder fallacy 2: the uncomfortable fallacy

So I was talking to my friend who wants to apply for Teach for America, which if you didn't know is one of those things that absolutely everyone in college thinks about and wants to do all the time (even I find myself wanting to do it--frequently I have to remind myself that I've rarely been at all interested in being a teacher, I just want to say I'm doing Teach for America). Because everyone wants to do Teach for America, it's really hard to get picked, and I suggested that my friend should apply to teach special ed because they really need people to do that.

But I knew she would say no. People always say no when you suggest that kind of thing. "The girl I know who applied to teach special ed has a lot of experience with that," said my friend, "and I don't."

I know I push a little hard but I said, "They're just kids."

"I'm not really good at that stuff," said my friend.

"But I've seen you with people with disabilities and you were fine."

"I was trying really hard. I was really uncomfortable."

Okay.

I'm hesitant to start my post with this conversation, because it makes it sound like I go around trying to force people to be special ed teachers all the time. I don't care if any particular person isn't going to be a special ed teacher, but I just have these exchanges with people that I think are sort of strange. I don't really get it because a lot of the time it's easier to get a job if you're willing to work with people with disabilities, but people have this attitude of, "I could never do that," or, "I'm not kind of person who can do that." Do you know what I mean?

Do what exactly? What kind of person?

The time I was referring to, my friend was encouraged by three of her friends to come and spend time with people with ID who the rest of us knew pretty well. I thought she acted normal and seemed to get along well with the people with ID. Given she doesn't really have experience with ID people at all as far as I know, it seems like that's a good outcome for her first try--kind of uncomfortable, tries really hard, does fine. That's what my first experience with ID people was like.

Also, as you might remember, I used to get really nervous about this kid in my building who is blind because I was like "how do you treat a person who's blind? What if I do something wrong?" Then we actually had some interactions, and now he's just another person. Until I was nine, I went to a school with almost no people of color, so whenever I did encounter people of color, I was always afraid of doing something racist. Then I changed to a school where there were a lot more people of color, and soon they were just other kids who I liked or didn't like.

I think I just sounded like I was doing some "I don't see color, I don't see disability" bullshit, which is not at all what I intended to say. After this change in you takes place, it's not like you don't know that people are different--it's just that you're familiar with the difference, so it's not scary. Depending on what it is, it might still be important. For example if someone is nonverbal and you're verbal, that's obviously going to make your interactions different from the interactions between two verbal people. But once you're familiar with people being nonverbal, communicating with a nonverbal person is at worst a challenge. It's not like "OH MY GOSH HE'S NONVERBAL."

A while ago I made a post called The harder fallacy which was about the idea that it's okay to talk about disabled kids in an insulting way because "it's harder to raise a kid who is disabled." This post could be called the harder fallacy #2, or maybe the uncomfortable fallacy. Basically, I think it's normal--or at least normal in our fucked-up society--to feel uncomfortable when you meet people from a group you haven't had much exposure to. But I think this reflects on you and not on the group. But I think that some people develop this idea (probably as a result of the harder fallacy or something similar) that there actually is something especially difficult and complicated about spending time with people who have certain kinds of disabilities. They think that people who don't find it difficult are somehow special or have special powers or are incredibly kind. I think this is insulting.

Again, I'm not trying to say that my friend should be a special ed teacher. Just getting not-uncomfortable with a certain minority group doesn't mean that you have to want to be around people from that group all the time. But I think it does lead you to feel neutral about people from that group instead of building them up as some sort of special skill that you have to have a gift for or a ton of practice with.

It's weird because if I suggest something disability-related to someone who's having trouble finding a job, I feel kind of shifty, like I'm forcing my beliefs or preferences on them. Whereas if I was like, "Hey, you should try to get a job at the stationery store," and the person was like, "Oh, I don't know, I don't think I'm the kind of person who can work at a stationery store," and then I was like, "What do you mean, you've worked at stores before," and the person was just like, "But oh man, stationery, it's just a big challenge," I'd be like, "...well if you feel that way maybe you should spend some more time with stationery."

16 April, 2010

briefly, a mystery

because I don't want to bother my parents, because I think they think I bother them a lot about this stuff, and my dad always says he can't find my records from the psychologist I went to when I was in second and third grade, who thought I had experienced some kind of traumatic abuse. At the same time, if someone thought I experienced traumatic abuse, I kind of want to know about it.

The other thing, though, the really weird thing, is the PDD-NOS diagnosis. It was kind of nice to find out about it since I anyway don't think of myself as having "Asperger's" and now I have an excuse for not wanting to describe my disability that way, and just saying ASD which feels truer and simpler. It's nice--but also, I kind of feel like I'm lying, because I've never seen the diagnosis written down, and I found out about it when I was twenty, nine or ten years after the fact.

Yesterday I told someone that I thought I had been sent to a resource room to practice eye contact. But then I didn't even know if I was telling the truth. When I think about it, I know that I went to resource rooms throughout middle school, but I remember very little about what I did. Maybe I just don't remember much about being that age--but although there's stuff I've probably blocked out, I paid attention to stuff that seemed relevant. I think the reason I don't remember about the resource rooms is simply that I didn't know I had a disability, so I didn't think about my life that way, so I didn't exactly realize that I was doing disability things.

I was interested in disabilities. I think I would have been aware if I'd known that's what it was about.

For the years before my AS and NVLD diagnoses (I was diagnosed with both at the same time, which is kind of like diagnosing someone as both homosexual and gay) I was conscious that my parents were worried about me and thought something was wrong with me. They read a lot of books and got me a lot of extra help. This bothered me and I remember the moment in seventh grade when I really sorted it out and realized how incredibly lonely and guilty I felt, and realized that I couldn't be as bad as the situation made me feel I was. My intent isn't to criticize my parents, they were doing what they thought was necessary--but my intent is to criticize my parents, because I can't believe that I was already diagnosed as ASD and they didn't just tell me.

I don't even understand why I got diagnosed again. I'm sort of starting to put together that when my mom would tell people I had PDD-NOS, they'd get really upset, or they'd just tell my mom it couldn't possibly be true because I didn't hit my head on walls. So--maybe--I'm constructing this--my parents wanted me to know I had a disability, because it would influence my actions in some way, or help me understand things, or something--but they didn't want to tell me I had something that was looked at as so dire. And then they found out about this thing called Asperger's which was kind of the same, but new and not as bad and easier to talk about? So they started trying to introduce me to it, and then they got someone to diagnose me with it? Not that they shopped around or something, but that they asked someone "Does Amanda have Asperger's or not?" like there were two options. That's how I think of it.

It's not exactly important. At the same time, I desperately want all my records, and I want to ask my parents a bunch of questions, but I always seem to ask at the wrong time, and I'm probably mean.

15 April, 2010

the day of silence

I'm not doing the Day of Silence--I mean, my school is really queer/trans-positive, it's not really an issue, at least not at such a basic level. I haven't heard anything about it at all. Except one of my friends who goes to a different school, who is against the Day of Silence because we're already quiet all the time so why would we be quiet some more instead of saying something. That makes sense to me.

However, I do think about Andy and become really proud, so I thought I'd tell you about him.

At some points in high school I was the only openly gay person, which was awful. Towards the end of eleventh grade, though, a new ninth-grader started at my school. Her name was Dana and she was very vocal about being gay; she mentioned it much more than I did. The next year, Dana and I would sometimes try to start a GSA. This was something I'd tried to do with various other kids in ninth and tenth grade, and always failed every time. We went to a private school, and I guess the situation was that the board wouldn't have been okay with it. But of course the headmaster and the dean of students, and everyone else my friends and I tried to convince during my high school career, couldn't come right out and say that, so they frequently would try to argue that a GSA would actually be a bad idea. They had two arguments which they would deliver, often within sentences of each other:

1. Our school is so accepting that we don't need a GSA.
2. Besides, if we had a GSA, the people who were in it might get beaten up.

So, okay. When I was in twelfth grade, the dean of students and I were friendly. She got annoyed with Dana and me and thought we were causing trouble, but she was still nice to me on an individual level, and I didn't hold it against her that the GSA never materialized.

Kids had tried to start a Day of Silence when I was in ninth grade. I was involved, I guess. It never happened; we were never able to get permission, we were told it would be disruptive. I don't think Dana and I really even thought about it when I was in twelfth grade. But there was Andy.

The Openly Gay Kids (when I was in twelfth grade):

1. Amanda (a senior)--weird, not very many friends, preferred to be friends with people a lot younger than her, but was learning to be with people and was mostly pretty mellow and nice. Was very shy and nervous about being gay, but as people graduated and she blended into the woodwork, fewer people actually remembered she was gay.

2. Dana (a sophomore)--very loud about various things and disliked for that, but also probably disliked more than she would have been if she wasn't gay. Although they didn't always get along, Dana was the only girl Amanda felt safe talking to and they had some games like calling each other "gayface" and talking about how gay they were, which was nice because Amanda found it physically hard to say the word gay except when she was talking to Dana.

3. Connor (a freshman)--very strange and distractible. He had a speech processing disorder and was prone to saying, in a completely serious voice, things like: "Sometimes I wish my eyelashes were longer because they're not very long...but I guess they'll grow." Amanda was fond of Connor of course. He had some friends even though some people found him annoying. Connor almost opted out of having to think about being gay because he was so out of it. Once he sent a bunch of flowery, ornate, anonymous love notes to a straight guy he liked, because he just didn't understand that you don't do that.

4. Andy (a sophomore)--had been assumed to be gay since he was in sixth grade, because he was small and did ballet. Eventually, in eighth or ninth grade, Andy had begun to mention that he was in fact gay. He occupied the most acceptable place for a gay kid--theater. Actually we were all involved in theater but Andy had the exact stereotypical personality of the harmless gay theater boy; he was mostly friends with girls, he was funny and gentle, he never politicized the fact that he was gay, and if he had crushes on straight guys he kept it to himself. He was a credit to the school--as the only Asian student, he was featured prominently in admissions booklets, and his dancing impressed teachers and students alike. Everyone loved Andy.

So, Dana and I didn't think about doing a Day of Silence, that much. But for some reason Andy did. He may have discussed it with Dana or me, I'm not sure; we knew that we couldn't get permission, couldn't get any kind of support from the school, but who was to stop people from just not talking? We asked our friends--well, mostly Andy asked his friends. And because everyone loved Andy, they agreed. And an impression was made, as far as I could tell. Discussions were started in class where teachers tried to argue that homophobia didn't exist and non-silent students couldn't help voicing their disagreement. People noticed that something was going on.

The dean of students was pissed. She made Dana and me come and talk to her. But it wasn't us! It's just not loud obnoxious gay people who care about homophobia, it turns out. It can be the gay person you love and trust, the one you thought was in your camp. It can be the gay person who you thought knew how silly all that stuff was, the gay person whose gayness is asexual and adorable.

I always loved Andy because he was funny and gentle. But then I also loved him for being sneaky and brave.

The Joe and Zach Liberation Front

So, I mentioned to LF that this kid in Joe's class, CJ, treats Joe like a toy. LF's reaction was "That's really rude of him," and I rushed to CJ's defense--I mean, I could be really inappropriate when I was a kid, and presumably CJ has some kind of DD to be in the class. (I don't know many kids so I'm bad at reading them as DD, and CJ is the only one who doesn't have a visible disability. He's also one of two kids who can talk, the other of whom is very difficult to understand.) I was sure CJ wasn't trying to be rude or patronizing, but I figured he was just kind of impaired in these areas, and hadn't been educated about what's respectful behavior toward someone who has a lot less freedom of movement than you do.

But at this point I'm just like, what the fuck. The way CJ treats Jonathan (the boy with CP) and especially Zach and Joe is not okay. Whenever people talk about students of different abilities being together, all the focus is always on the poor non-disabled or least-disabled student who is supposedly being dragged down or traumatized by the presence of more severely disabled kids. But I can't imagine what it's like for all the nonverbal kids when the teacher asks a question during circle time and CJ yells out the answer. They never even get a chance to think about it or try to show what they know.

And mostly, CJ is just really super rude.

CJ comes up to Joe, throws his arms around Joe, slaps Joe on the back a few times, and declares, "I love Joe! We're buddies!" Obviously I'm looking on doubtfully, since poor Joe has no choice but to receive this boundless affection--but CJ reassures me, "Joe loves me! We're friends."

Okay. This bugs me. I'm not trying to say that a kid like Joe is incapable of feeling or expressing love--in fact, just today he indicated to me that he loves Easter. I haven't seen that kind of quantitative proof when it comes to CJ, but Joe may well love CJ, who knows. But I just don't think it's appropriate for CJ to constantly announce that Joe loves him, when Joe isn't capable of saying, "No I don't." A kid like CJ and a kid like Joe can be friends, but I think that CJ needs to be encouraged to think about the fact that Joe can't express himself as clearly and unambiguously as CJ can, and needs a friend who is sensitive and doesn't smother him. It's easy to smother someone who can't tell you to stop, but that doesn't make it okay.

Also, CJ will grab the other kids' wheelchairs and trainers and try to push them; pick up Joe's hand and wave it for him; try to shush the other kids when they're being noisy; wait for the other kids when they're late; and other things that are not appropriate to do with people who are your own age (and, in most cases, older).

Then the Zach thing, and admittedly, this is a really biased description of what happened because CJ was getting on my nerves. As previously mentioned, Zach is a very small, very emotional teenage boy who I am inordinately fond of and who uses a trainer during gym. Zach's trainer was being used by another kid, so Zach had to use Joe's trainer from when he was younger--I know nothing about trainers, but given that Joe is not as strong or fast as Zach, I'm wondering if the trainer wasn't suited to Zach and that's why he was zooming around incredibly fast and started smashing into walls. Because eventually that's what was happening.

Zach started running the trainer over to where the ambulatory kids were playing golf (practicing for the Special Olympics, I assume). CJ kept yelling at Zach and grabbing his trainer and moving Zach away. CJ always has a smile on his face, so I don't know if he had bad intentions, but it would have really pissed me off if I was Zach. By the time I really started paying attention, Zach was crying as he again and again turned his trainer and barreled it in CJ's direction. CJ kept confronting Zach very physically and asking what was wrong with him.

I had a feeling, though I could be totally wrong, that Zach was actually trying to run CJ down with his trainer. Maybe I just wanted that to happen. However I managed to restrain myself from cheering Zach on, and pulled/encouraged him over to the steps at the side of the gym, where I could sit down and be at his eye level. He either likes me or is a pretty easy kid as soon as anyone treats him with respect; I put out my hand, we held hands, he stopped crying, I talked to him about how CJ isn't very sensitive and there's nothing we can do about it, he put out his arms and hugged me for a long time, and then we walked around as far away from CJ's corner of the gym as we possibly could--with me pretty much always holding onto Zach's hands, both because he seemed to want me to, and because he was just going so fast in the trainer it was freaking me out.

So, eventually CJ is walking around too, and CJ comes up and says very loudly into Zach's face, "You're okay? You're better?" I was kind of afraid Zach would get upset again, but he had no reaction as CJ hugged him, smacked him on the back a few times, and informed me, "Zach and I are buddies."

Yeah, okay.

14 April, 2010

letter to my friend who identifies as Autistic

I guess maybe I'm weird but even though I don't like the word autistic, I really like the word Autistic. The first time I saw you use it I thought it was the cutest thing ever. Also, when you wrote my social story, you said something about how it would be nice to have "another Autistic friend who lived nearby," and when you said that it felt really nice.

I mean, maybe I just like it the way you like the words you associate with someone you like, but I don't think that's true, I think I like it for real.

I think my thoughts are:

1. I definitely don't like Aspie--well, obviously, because I don't identify that way, but also because it's mega cutesy anyway.

2. I actually like autie but it feels more casual and it's not something I would use most of the time. Sort of like calling myself gaygerms or calling people trial. [That is, something I do with good friends or when writing instructions for myself.]

3. I like ASD best because I can't be accused of being inaccurate, and because I don't have to declare a major (since I'm a double major, anyway) and also because I like the way it looks.

4. The reasons I don't like autistic are threefold:

A. While I do think autism is one disability like CP, blah blah blah, it kind of bugs me when mildly affected people identify as "autistic" without actually having experience with more severely affected people. I think there is a danger in taking the word "autistic" and applying it to yourself and the ASD people you know, if you are all mildly affected, because then in your mind autistic can come to only mean a particular kind of ASD people. I might not be explaining myself well, but do you see what I mean?

B. Obviously my life is much easier than and very different from the lives of people who are severely affected--although I've come through trial and error to think that things that are harmful to them are insulting to me, and I owe it to them to take it personally. But I would rather not have to explain to some boring strawman-using person that I understand autism is a spectrum and I'm not trying to say all ASD people are like me. I think that ASD gets this point across quicker.

C. In situations like my Child Developmental Disorders class, "autistic" feels like hate speech. I almost feel that autistic-identified people who are very offended by person-first language are, like...addressing a very small minority of normal people who are actually a lot more decent than most normal people. I feel like this supposed big group of normal people who are trying to oppress us with person-first language actually doesn't exist. I feel like a lot of normal people who say "people with autism" tend to be more compassionate towards ASD people, and obviously don't really know about the culture, but are past the really mainstream view of autism, which is:

"Autistic kids" are little monsters who don't care about anyone, are violent, etc. They rock, hit their heads, don't make connections, don't have feelings. They are very hard to live with. "High-functioning autistics" can talk and do brilliant things (with science and computers mostly) but they just talk about their interests all the time and they also don't care about anyone and they might rape you. Autism isn't a disability, it is actually a personality trait/kind of person--it means coldness and indifference.

I know that not everyone ASD is really plugged into this sort of idea but because of various experiences I've ended up being really hyperconscious of it and as a result, the word "autistic" (especially used as a noun) and ideas about "autism is who I am" make me really uncomfortable.

I think I told you this but when I was nineteen I had a friend who had just realized that she was a lesbian at age twenty. Unlike me, she had never thought of herself as being anything other than straight and had never personally dealt with homophobia. She hadn't come out to her parents or most of people around her. I'm not trying to say this to cut her down but just to set up the rest of what happened:

She had this habit of calling me a dyke, constantly, as a joke. When I was younger, I was called a dyke by people who did not see it as a positive term. It's a word that makes me feel awful. When I tried to tell my friend I didn't like it, she would say, "but I hear lesbians calling themselves that." That's how it sometimes makes me feel when ASD people run around saying autistic and calling each other autistic.

(While we're on this analogy, the word "queer" is used at Oberlin with no qualms at all--most non-straight people describe themselves this way, or at least are willing to accept it as a possible descriptor. A gay kid who is from a small midwestern town, and identifies himself on Facebook as "homosexual," mentioned that he found this really confusing and upsetting because he had only heard "queer" as an insult before.)

If I was talking to a normal person, and they said "my cousin has autism," I'd feel MUCH more comfortable with them than if they said "my cousin's autistic." I think the anti-person-first-language thing is sort of a really deep issue IN the ASD community, but in mainstream society, I feel like it's reversed.

5. However, Autistic sounds nice, because it sounds like you and I like you, but also because you can tell from the capital letter that it is about identity, so it gives agency to the person being described. While "autistic kids hit their heads on walls" doesn't give the people being described agency. Also Autistic just sounds kind of cute and old-fashioned, because even though Deaf is still Deaf and probably always will be, people are not Black or Gay or Lesbian anymore. I like old things (like you), so that's one reason I like it. If I stopped calling myself ASD, I would call myself Autistic.

Maybe the difference between my dad and us can be that my dad might be autistic but we're Autistic. Is that it?

(Disclaimer: as I said in my "Why I Dislike Person-Free Language" post, I respect plenty of people who identify as autistic and I'm not trying to insult anyone or say that anyone is being a jerk by using the word autistic--just exploring my feelings about it.)

PS--I forgot to put person-first language on the list, which is funny because it's what I use outside of the Internet. In real life I would probably say "I have autism" or "I have autism spectrum disorder"--or if I'm feeling wimpy, the ego-dystonic and not perfectly accurate "I have Asperger's." When I talk about other people with disabilities, especially ASD, I definitely use person-first language. In my CDD class it's very very important to me to say "kids with autism," "kids with intellectual disabilities," etc.

13 April, 2010

I don't feel sorry for Schlitzie Surtees



I mean: I feel sorry for him because his only options in life were to be a sideshow performer or live in an institution. Even though he liked performing, it should have been a choice. But I don't feel sorry for him because he had microcephaly.

A few weeks ago, Mike D'Angelo at the Onion AV Club wrote a piece on Freaks that makes me think he didn't get much out of the movie. Basically, he says it could never be made today (why not?) and that the presence of Schlitzie and other people with disabilities "gives the film an unavoidable skeeviness." Before a clip of the "one of us" sequence, D'Angelo announces, "If you can watch this sequence without experiencing conflicting emotions, you worry me."

That's right. I have something wrong with me because I think Schlitzie, Johnny Eck, et al. are really fantastic, and don't have a problem with Tod Browning including them in a movie.

This is a placeholder for a longer post about Freaks and the general idea that it's inappropriate to be interested in and/or pleased by disabled people, especially intellectually disabled people. Apparently D'Angelo thinks that the appropriate way to treat someone like Schlitzie is to avert your eyes as fast as possible. Except, he can't do that, because Schlitzie is awesome--but he takes care to emphasize that the way he feels, and the way Browning apparently felt, is REALLY FUCKED UP AND MYSTERIOUS. It's just one of those weird fucked-up things that people feel.

But it's not fucked up at all! What's wrong with liking Schlitzie?

I'm going to quit and come back to this later, but for the time being, this is a really brilliant and beautiful post by Shiva, another ASD person who likes Freaks: Freaks, Hercules, and the Hydra.

And another thing: it's a privilege to know Joe and Zach. They are interesting kids and I feel fond of them. If I hadn't, in movies and in real life, been exposed to people with microcephaly and other different-looking disabilities, I wouldn't be able to get to know Joe and Zach the way I am; the way they look would have been a distraction, instead of just a part of who they are.

At age twelve I became terrified when I was sitting near a very different-looking, very loud disabled kid in church. My reaction to her was horror and sadness. I started crying. I don't think this says anything about unusual-looking people. I think it says something about the idea that it's inappropriate for unusual-looking people to be in public or to be portrayed in art, and how dangerous that idea is.

12 April, 2010

a public service announcement

(because I told Todd I was sorry for being mean, but if you're not Todd you might just read this exchange and think I'm super mean): everything [Dawn Eddings Prince] wrote is really beautiful and I feel the same way as some of it. But I feel really uncomfortable about anyone ASD who goes around saying they're not disabled. I understand that's maybe not what she's doing but I guess I'm just really sensitive to that.

This is how her article is described by Ethos, the journal it appears in: "Dawn Eddings Prince, who provides an emic or 'native' point of view, sharing her experience as an anthropologist with Asperger’s Syndrome and illustrating autism as a different way of being, rather than merely a medical condition."

??? Well, first of all, ASD is not a medical condition, it's a developmental disability. It's not a medical condition "merely" or in any other way. It's not a medical condition at all.

Second, all disabilities are ways of being.

I know that people with disabilities are alive and that we feel stuff. I think that assuming that people with disabilities feel really awful all the time, or feel terribly incomplete, is wrong. I think that a lot of the bad things that happen to disabled people come out of an idea that a)we're always in pain, or b)we feel things, especially happy things, with less vividness than everyone else. And a total refusal on the part of nondisabled people to listen to that.

So...when I hear people talking about how autism or any particular ASD is a "way of being" my question ends up being like...duh? And...why just ASD? Why not other disabilities too?

I am very very oversensitive to this kind of thing, I know. The truth is, fallacies about ASD not being a disability are my very favorite fallacies to tear apart, and I guess I try to sniff them out more than is entirely necessary.

11 April, 2010

A flawed but I think useful model of ASD

I want to make a post about being intellectually disabled without the intellectual disability. Which is related to my whole thing of preferring to call myself developmentally disabled instead of any autism-related word.

This is partly, as I said, because I hate the word autism. Sometimes I wonder what is wrong with me that no one else seems to hate it as much as I do. I feel like the word is very intimately tied in with the kind of mistreatment that ASD people receive from professionals. If despite all evidence to the contrary people continue to think of autism as primarily a social disability--a disability of dislocation and indifference--then the obvious way to treat people with autism is to MAKE THEM SOCIAL! But how do you do that? How do you look at a person and make them social?

Well, you try to make them act more normal. You make a list of normal things to do. And then you try to train the person with autism to do those things.

You also make a list of things not to do, like moving wrong. And if you know any people with intellectual disabilities, maybe a bit of doubt is starting to creep in, because...don't a lot of intellectually disabled people move wrong, too? NO NO NO NO. Autism is not about that! Autism is about BEING OBSESSED WITH YOURSELF! Kids with autism just move wrong because--well, it's like, the whole thing where they flap their hands over and over is kind of like how they have really strong interests! It's basically the same thing, because they don't...because they don't switch from one thing to another, they just always do the same thing!

(Except some intellectually disabled people have really strong interests. Shit.)

When I started realizing I wanted to work with DD people--I mean, not when I started wanting to do it, but when I became sure that I was going to do it--it was mainly because I realized that I'm not a person who can batter through a lot of really exhausting things, like moving right, and trying to pick up on things really fast, and then, when it still doesn't work and everyone rolls their eyes or gets mad at me or thinks I'm a lot younger than I am, then, pretending that I don't even care--it was mainly because I realized that for my own health I needed to aspire to a career where I would be spending a lot of time with people whose ways of moving and thinking were not extremely different from my own.

And eventually I narrowed that down to wanting to work with intellectually disabled people, not ASD people--not because of any particular difference between ID and ASD people, but because of the extremely different attitude in the staff who work with them. A particular ID guy, who I think and write about a lot, likes to collect fliers. The people who work at his workshop and group home try to keep him from grabbing entire stacks of fliers and putting them in a bag, but the general reaction to his excitement about fliers is amusement and affection. He was recently Consumer of the Month at his workshop; if you mention him to a staff person, they light up and say, "Oh, he's hilarious, he's great. Did he show you his fliers?"

Think about what would happen if an ASD person, in a school, group home, or workshop specifically for ASD people, expressed that level of excitement about collecting a certain kind of object. And flapped their hands and jumped around (which he also does). The reaction would not be "you're great" because ASD is conceptualized as a disorder that has to do with not caring about people or not knowing how to be with them. So the reaction would be, "There you go, doing your repetitive, antisocial behaviors."

This is why I can't work in most places for ASD people because I can't really suppress my positive reaction to "repetitive, antisocial behaviors" like stimming and being really interested in things. Also, I am prone to such behaviors myself, so it would just fuck me up spiritually and in terms of self-esteem.

I know this is a total crock of shit, what I'm about to say, because some ASD people aren't like this. But this is how I think of ASD in myself: intellectual disability without the intellectual disability. Which means, a lot of the same movements and emotional reactions as ID people, and a similar way of being slow to pick up on things and sometimes slow to get out the words I want to say, and trouble with looking after my best interests in various ways. But academically, when all the other stuff doesn't get in the way, I'm not actually intellectually disabled.

Or you can say it like this: I have an anti-learning disability. Instead of being affected only in terms of academics, I'm affected only in terms of everything else.

For a while, weren't they mostly calling us PDD instead of ASD? I really like that better. ASD is so focused, just because of the name, on this ONE THING. And I feel like sometimes I understate the social stuff, because it does exist probably, but I feel like it's not that much more social trouble than a lot of people with intellectual disabilities experience, just by virtue of being different and maybe not picking up on things as fast. It's definitely not the core issue in my experience, I don't think.

I feel like if autism wasn't thought of as being this inherent state of selfishness and indifference, life would be totally different and better for people who have it. There is a tremendous and awful amount of prejudice directed at people who have intellectual disabilities, but I feel like it isn't quite as acceptable to say that it's "heartbreaking" or "a nightmare" to raise a child with an ID. And I'm not being disingenuous because I seriously think that a lot of people with ASD are loving in a lot of ways, but people don't see it because that's not what they're taught to expect. And they also don't see joy and nonverbal communication and stuff when they look at stimming because they've been taught what to believe stimming is.

ETA: I guess I feel required to state once again that I think this characterization of autism is totally full of holes--however, I do sometimes want to wrench out some kind of narrative that will fit me, and it does fit me, even though there are lots of ASD people it doesn't fit. Rather than putting out this model to be judged as correct or incorrect, when it's clearly somewhat incorrect, I'm more trying to stake out an opposite pole from the selfishness model of autism, to turn that model on its head. I believe the anti-learning disability model makes more sense than the selfishness model, and is somewhat closer to whatever the truth is.

09 April, 2010

Study: Gender Identity In Individuals With Autism

Study: Gender Identity In Individuals With Autism

This is a link to a blog that explains the study and links to an online survey. It's for American people in their twenties with diagnosed AD, AS, and/or PDD-NOS. It just asks you about your gender identity in your childhood and how you think it was affected by your ASD. It's not very long.

You probably read Here Be Dragons, but just in case you don't. It seems interesting.

I'm trying not to write off-topic posts

but I'm just so happy I want to vomit all over the place, so:

Okay, first, can I just tell you about my life experience so far with Scott Pilgrim? Three years ago, my best friend went to a theater program where she became really attached to a particular counselor. He advised her to read Scott Pilgrim. A few weeks later, we were at a comic store and she bought the first book. (I bought the first Runaways collection, launching an obsession of about a year--and I hope to God they never make that into a movie, because they will FUBAR it.)

While I was away at school, A.T. became so enamored of Scott Pilgrim (and is such a good friend) that she bought and sent me the first three books. Magic! A.T. has since controlled my Scott Pilgrim intake, since I am too lazy to walk the approximately four steps from my dorm room to Infinite Monkey. (That's actually not true, but last year Y the Last Man started taking over my brain and I wasn't capable of spending money on anything else.)

Last year we had occasion to get excited about the SCOTT PILGRIM MOVIE! We didn't know what to think about Michael Cera being in it, even though we feel the way about him that we do about Scott Pilgrim (and have since before he "made it," if you're keeping track). Scott Pilgrim isn't supposed to be mellow and Michael Cera has never played anyone who wasn't. It was being directed by Edgar Wright, though, which was basically perfect, because something like Spaced has a very similar genre and feel.

AND NOW! LOOK AT THIS:



AAAAAAAAGH

(I don't think Michael Cera is going to be as mellow as I feared. And also, I just realized I'm way too excited to care.)

08 April, 2010

Recommended Reading Number Two: Down Syndrome Prenatal Screening

This is a two-year-old Dave Hingsburger post--I found it when I was messing around, and I really recommend you read it--A Question Along the Way. Actually, this one too: A Story About George. They're both stories related to prenatal screening for Down Syndrome.

It's just an upsetting situation. I mean, we freak out about it happening to us, and we make this analogy, but I can't help but feel we should be doing something about the fact that it's already happening to them. But what can we do?

I don't know many people with Down Syndrome right now. There are three kids with Down Syndrome in Zach and Joe's class--Steven, Anthony, and Deja. Steven seems to have a bunch of sensory issues and he and Deja both get upset a lot; I haven't really gotten to know them. I like Anthony, he has a sneaky smile. About a year ago I knew two older women, Sharon and Emily, who both had Alzheimer's but were about as different as two people can be. Emily struck me as incredibly brave and I still think about her a lot.

I'm going to adopt when I have kids, and I know I'll probably want to adopt a baby with Down Syndrome. I have this whole riff about how I'm going to dress him in really snazzy clothes to make up for all the people who dress their kids with Down Syndrome in jerseys and give them bowl haircuts. But any kid of mine will probably end up dressing like a lumberjack, I'm sure.

In 2007 there was a New York Times article about parents of kids with Down Syndrome who are trying to educate medical professionals and prospective parents about what kids with Down Syndrome are like--which is to say, you know, kids. Perish the thought. My favorite part is when the medical professionals basically say that it would be mean and upsetting to ask people who are pregnant with Down Syndrome fetuses to talk to one of these parent advocacy groups. God forbid they actually have to think about what they're doing; FEEEEEELINGS strike again.

This is the article: Prenatal Test Puts Down Syndrome in Hard Focus. It has some accompanying videos which I haven't finished watching. The article also made me aware of a really boss Newsweek piece by George F. Will, Jon Will's Aptitudes, about his then-21-year-old son:

One must mind one's language when speaking of people like Jon. He does not "suffer from" Down syndrome. It is an affliction, but he is happy-as happy as the Orioles' stumbling start this season will permit. You may well say that being happy is easy now that ESPN exists. Jon would agree. But happiness is a species of talent, for which some people have superior aptitudes...

Because of advancing science and declining morals, there are fewer people like Jon than there should be...

It seems mistaken to say that Jon is less than he would be without Down syndrome. When a child suffers a mentally limiting injury after birth we wonder sadly about what might have been. But a Down person's life never had any other trajectory. Jon was Jon from conception on. He has seen a brother two years younger surpass him in size, get a driver's license and leave for college, and although Jon would be forgiven for shaking his fist at the universe, he has been equable. I believe his serenity is grounded in his sense that he is a complete Jon and that is that.


He also wrote this piece, which is more focused on prenatal screening: Golly, What Did Jon Do?

Just a splinter

Okay, I got kind of pissed in class today because we were talking about bullying and people started talking about their friends and how when their friend's ex-boyfriend or ex-girlfriend comes into the room, they start pointing at them. I don't really understand the point of talking about bullying if you make the definition of bullying so broad that it's about everyone.

I raised my hand and said something like this (I didn't sleep last night, okay? I'm not doing a good job taking stuff lying down):

When I was a kid I had very dramatic physical and facial reactions to things. So, other kids would come up to me with scissors and make like they were going to stab me in the eyes. They would also goose me, lunge at me, etc. There were also verbal fake-outs where people would say things over and over that we both knew weren't true, like that they wanted to go on a date with me.

I'm not saying this ruined my life or anything, but it has had a huge effect on my ability to have physical emotional reactions to things. It's very hard for me to let myself smile or flinch or anything at the drop of a hat, especially when I'm standing up. For example when I see people I like, it's hard for me to let myself look happy. My body wants to look happy, but it stops itself. It can't just let itself do whatever it feels like. I feel overwhelmed and I make faces or just go stiff and stuff instead.

After I had only been away from that environment for a year, I had this boyfriend who I communicated with online. I had known him in real life before we started being in contact online, but once we started dating I would get too panicked about seeing him in real life or even talking to him on the phone. It was just too much. I couldn't let myself get overwhelmed by being around him. One time he made the mistake of telling me that he loved me, and I got so upset I went on this dissociation/shutdown experience for most of a day.

This is obviously much more than what I said in class. And I'm not trying to make a point. I mean, I am, but do you see what I mean without me coming out with a thesis statement? People are frequently shitty to each other but I would say that people were shitty to me in a way that led to very pervasive problems that still affect me almost ten years later. When I have little DSM flamewars or whatever, I don't think that's the same thing. I don't think anything will ever be the same thing.

This is the only thing I want in the world



(except that I'd have to cross out the word "not," but that's a sacrifice I am willing to make.)

07 April, 2010

Feelings are not real

So for some reason I was torturing myself by reading the blogs of a bunch of curebies (I know that curebies is kind of a rude word and I try to be more civil, but I don't know what else to call them). They were talking about how they think Ari Ne'eman doesn't care about individuals with severe ASD.

I disagree, and have said so in previous posts, but that's not really the point. Nothing very exciting was happening. Then, one of the people who was listing Ari's supposed views linked to another website. I clicked on the link, expecting it to be some sort of statement he'd made that had offended them.

However, it was actually this: http://www.asperger-advice.com/asperger-syndrome-behavior.html

Get it? Ari is inherently incapable of understanding other people's feelings! That's why he has the wrong opinions. Because he simply doesn't understand that other people feel bad, and if he could just understand feelings like normal people do, he would have the right opinions.

This is sort of a refreshing break from people who claim that he's not really autistic. Except, it's actually not, because it's a fucking giant piece of hateful bullshit! I should mention that this isn't really about Ari or anyone in particular. It's just a fucking terribly stupid thing to say.

I mean, first, the obvious: this isn't what the ASD "lack of empathy" is about. I don't pretend to know exactly what it is, but here are some ways of thinking about it. (I don't agree with all of these, but I'm trying to be exhaustive.)

1. people with ASD can't read other people's body language instinctively so we don't notice other people's emotions as much
2. people with ASD think about things differently from normal people so we don't have as good a sense of what to expect as they do with each other
3. people with ASD are really overwhelmed by a bunch of stuff and don't have as much energy/processing ability to spare figuring out other people's feelings and reacting to them
4. people with ASD notice things about other people, but we don't always notice the "relevant" thing (remember the Square 8 post where Bev realized that someone was upset because the person's clothes were messy, but no one else noticed because her body language seemed normal?)
5. people with ASD don't understand that other people don't all know the same things we know
6. some combination of the above

So, absolutely none of these characterizations of ASD empathy impairment have anything to do with not caring about people, or not understanding/caring that someone else is upset if you are explicitly told that they are upset. So, what the fuck is this person talking about?

Basically nothing. Basically trying to figure out another way to say that Ari (or insert name here) doesn't have a right to speak.

I'm just going to say something: I don't care about your fucking feelings. Don't you think that I, for example, also have feelings? Lots of people have feelings but only privileged people get to spend four hundred million hours talking about them. If you have a kid who fucking has seizures and bites himself, you know who everyone is supposed to feel sorry for? That's right. You. Not the person who is in actual physical pain and probably feeling terribly overloaded all the time.

People with disabilities are never expected to feel as bad as the people around us. This is why people get away with saying really fucked-up things about their disabled relatives, and even abusing or killing us. Because their feelings are such a huge deal that they totally trump the actual real things that happened to the disabled person.

The funny thing is, I actually have plenty of doom-and-gloom views about ASD and disability in general. I don't think ASD makes me special. I'd rather not have it. I think lots of other ASD people would rather not have it too. But since I'm an actual person with ASD, if I just sat around thinking about how it isn't all that great, I'd become really depressed and useless because it's my entire life and it will never not be there. (By "my entire life" I don't mean that ASD is my only notable quality--I mean that I've never lived without ASD, and I never will, unlike family members of people with ASD who claim to "have autism" or "live with autism").

So, instead of just being like "feelings feelings feelings feelings feelings," I try to look at all the interesting and meaningful aspects of having a disability, and I try to learn about and help other disabled people, and teach and be helped by them. I feel like when I do this it becomes one of the coolest parts of being alive and then I maybe understand why God made me disabled in the first place.

I sort of went off on a tangent and I apologize because I was trying to talk about the really screwed-up "you just think that because you don't have empathy" tack. But this just makes me so upset because it seems to tap into the whole thing about how important feelings (usually non-disabled people's feelings) supposedly are. I'm sure Ari has feelings too, but he doesn't feel the need to spew them all over the place like you do, and he has the grace to say "I disagree with you" instead of "People who don't have autism are incapable of understanding logic," or whatever.

05 April, 2010

Recommended Reading Number One

First, the geek stuff:

Five Geek Social Fallacies. I guess this is a really old and classic thing but I just encountered it for the first time. I actually don't socialize in groups very much but I do think it's interesting to think about how socialization is different among people who didn't socialize when they were younger.

Better Late Than Never? The Office by Zack Handlen at the Onion AV Club. This is interesting because I've had a problem since I was a little kid with fiction where characters are about to get caught doing something wrong--like, I'd have to leave the room during movies and stuff. I find it really hard to watch/read things where characters cheat, lie, or impersonate other people because I get anxious about the idea that they're going to get caught.

Then, this wonderful post at FWD/Forward by Anna: Jenny McCarthy & Autism Part 2: Let's All Be Normal (Acting). The post isn't actually about Jenny McCarthy or even really specifically about autism, but is about the pressure that non-disabled parents of disabled kids put on their kids to act less disabled.

Today the FWD/Forward Recommended Reading included this post, AngryBlackBitch: On Autism Awareness, by a woman who is a guardian of her ASD brother. There are some problematic aspects as Kowalski pointed out in her comment on the FWD/Forward post, but overall I think it's really nice. That post reminded me of a post I found that's a few years old and was written in response to the Ashley Treatment, by someone whose sister is severely intellectually disabled: Fit of Pique: Growing Up with Sky.

Also Dave Hingsburger has continued to post awesome videos with transcripts: Change Begins, about witnessing abuse in an institution and being pressured to keep quiet about it; and Sean--An Evening Out, about treating a teenager with severe CP like a person. His Easter post is also beautiful.

I hope this post isn't annoying or anything. I don't know if I will make another like it--I mean, I probably will, but I don't know when. I just find things I like and I get excited and want to make sure everyone else gets a chance to like them too.

Quote of the day:
"Facebook is a lot of fun. I always pretended not to like Facebook when I thought I was too cool for school, but now I really like it. All these girls comment on things I do, which is not all like real life."--John

Before recommended reading

I feel hesitant about linking things that are related to the state of being a geek or school outcast. I really don't like the equation of mainstreamed ASD people with these roles. (This is a very unorthodox use of the word mainstreamed but I try to avoid words like "high-functioning" because I'm not actually talking about how good the person's life is or how accomplished they are. When I say mainstreamed I mean people who aren't immediately socially categorized as "disabled" and can be fit into other social roles such as space case, manic pixie dream girl, geek, stoner, unstable artist, etc.) The thing is that ASD isn't considered to be something that manic pixie dream girls are always self-diagnosing themselves with, and people aren't always responding to a description of Asperger's with, "Oh, that just sounds like a manic pixie dream girl." So when I write about my use of or identification with the MPDG social role, I don't feel that it's undermining my identity as a disabled person. I do feel that way about the geek and social outcast roles because they are so often invoked to create a slippery slope where milder forms of ASD are not "real."

But, okay: most mainstreamed ASD people are some kind of geek, and are or have been some kind of school outcast. (I'm actually not a geek, I don't think. To me being a geek means your social life is based on your interests. My interests, like my religion and the fact that I'm disabled, are an important part of who I am but not something I have in common with most of my friends.)

Anyway, what I'm trying to say is that FWD/Forward does "Recommended Reading" posts, and I love FWD/Forward. And. Sometimes I see stuff and want to link it. But some of the stuff is not actually Disability Stuff but it feels like that to me, because it relates to social roles and experiences that I think are more common for ASD people. But I don't want to do the ASD = geek thing. But it feels related!

So. I'm going to do some "Recommended Reading" posts sometimes and some of the posts are going to be things that were written about weird, non-ASD people. But I'm still disabled, okay?

Some more reading

I was going to tell this to Lion Face but it's not really an LF-specific story so I will just tell you. Last week I was at the doctor's office when a DD person came in. The reason I'm using the umbrella term, even though I know he was intellectually disabled and not ASD, is that the reason I read him was his body language. There are some DD people who have a really distinctive, dramatic way of walking, and I think anyone could read them, but I like to think that my reading of this guy wasn't something that just anyone could do. Without being at all critical of the intellectually disabled people I know in Ohio, who tend to dress in a distinctive way, I'll say that he didn't dress like them. He was wearing an orange striped polo shirt and khaki pants. He looked nice.

The way he moved was nice too. How do I say this? The shape of his smile, but mostly just the fact that he wanted to do things he wasn't doing. He waited for his aide to go in and talk to the nurse, and he started to twist his legs around, started to bend one of his legs up, but kind of stopped himself and put his leg back down.

His aide came out and sat down next to him. And the nicest thing happened--they looked at each other and grinned sneakily. I'd almost forgotten why I used to want to work with adults, but the potential for sneaky grinning is definitely the number one reason. (I'm probably going to work with adults because I think there's a greater need for sincere and ethical support staff when it comes to adults. But in light of recent events, i.e. Joe Cuteness, I've started feeling more reluctant about the idea of not working with kids.)

I wanted to talk to the guy, but I felt weird. His aide went over to the receptionist and he looked at a magazine. I felt like he was aware of my presence because he kept doing almost-stimmy movements with his hands, but when I looked up (I was sitting across from him) he would stop. So I said, "What are you reading?" and he said excitedly, "Good!" and I said "What's it about?" and he indicated that he hadn't really started looking through the magazine yet, and I said, "Well, what are you going to read?" and he looked through the magazine for a minute and then his aide came and got him to go up to the reception desk.

Cut to me feeling weird. Is it okay for me to bug other DD people and try to talk to them? And I mean, let's be honest--it may feel the same to me, I may feel plugged into them in a sense I don't feel with non-disabled people, but we're basically looking at an apparently normal person striking up a conversation with a person who (while almost passing when he doesn't talk) is moderately to severely intellectually disabled. Doesn't that seem patronizing, or something?

I wasn't being charitable. His way of holding himself warmed something in me. It's really, really nice to see other people who move differently--it's funny, because who knows if the way I move even looks that strange--I'm not masochistic enough to ever videotape myself walking. But it's such a deep part of me, it feels like a huge barrier between me and everyone else.

For the past year I've been mildly crushing on a straight girl I don't really know, who has a jerky way of moving. I mentioned it to Noah--I mean, he knew that I liked her, but I was saying that it was a little bit about her being awkward, both as a person and the way she walks--and he said, "Oh--I didn't know if you could tell if other people are weird or not," and I said I could, and he said, "Do you know the way you walk is a little funny--" and I said yeah.

(I guess that exchange makes Noah sound like a jerk. I don't know. I find him an easy person to be with in a lot of ways. Sometimes when I see people I really like, I stretch my hand out towards them, and when I do it to Noah he imitates me and pretends to be a deejay.)

03 April, 2010

sometimes the best self-advocacy is shutting the fuck up

I really, really don't want to write about disability for normal people.

I don't want to explain that I don't see people as objects. I don't want to explain that I'm not just imagining that I have a disability. I don't want to have to make an analogy where I go, "Some people with cerebral palsy can talk and some can't, they all have cerebral palsy, and it's the same with autism spectrum disorders." (Also, who knows if people will even get that. My dad thinks that the reason CK can walk is that he's really energetic and determined.)

I have recently been trying to have these conversations with my mom. I don't know why. I just get told that, for example, I should imagine why someone might kill their kid with a disability. This really upsets me because it's not that I don't have compassion for people who do bad things, but constantly reminding me to have compassion for a particular group of people who do bad things seems to imply that what they do is less bad than what other people do.

My mom said that maybe when I'm older I'll learn not to be so emotionally affected by things like the ableism in Precious. When she was trying to explain why Autism Speaks is okay, I said, "It's different for me because all this stuff directly affects me," and my mom got mad and said, "Don't you think autism affects me?"

Well, apparently not. Because if it affected you I think you'd probably understand a fraction of what I'm talking about.

(Don't think it's just my mom. It's not just my mom.)

I'm not even a radical. But you know what, I'm sick of caring whether anyone thinks I am. Actually, I'm just not going to try to engage with any normal people about this stuff ever again. I've been trying to understand why I'm so depressed all the time now, and I think it's because I've developed this idea that I should be trying to express myself on these issues in Real Life. I think I'm going to throw in the towel, not tell anyone I have ASD unless they definitely need to know, pull out all my passing stops, and not fucking talk about this shit anymore.

I like writing this blog because I think some people are affected by it. I like working with other DD people, because I think some of them are affected by it. Those are the only things I want to do, disability-wise, and I don't want to feel guilty. I want to compartmentalize my identity and my beliefs. I think I'm going to have a great time.

02 April, 2010