from June 2009

[I found this on my old livejournal, it's quite different from how I feel about things now but I thought it might be interesting.]

Liz called me yesterday because she was bored.

I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.

Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.

So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.

Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.

Why I don't like ASD memoirs, and other stuff

Someone sent me Tim Page's piece about having Asperger's in the New Yorker. I read all of it and it kept my interest on one level but at the same time it was really, really boring. It's funny that I should say this when my blog is so incredibly self-centered, but it was too self-centered for me. I should mention, I'm sure Tim Page is a really nice person and all, I just don't like this genre of ASD memoirs or maybe I just don't like ASD memoirs.

I don't see the point of writing a piece (and now I guess a book) that just seems to be a list of all the weird things you did when you were a kid. Is that weird of me? It's funny because I write so much about having ASD, and when I write fiction it's always about people who are off in some way or another, so it's not like I'm avoiding the subjects of ASD or weirdness. But when I write stories I guess I'm trying to wrangle some kind of beauty out of weirdness or find new things to say about it. And when I write stuff about ASD I am interested in either expressing my opinions about disability or talking about ways to deal with specific impairments. I guess the Tim Page stuff bores me because I feel like there's no movement in it.

As I say about a thousand times a day, my favorite book about ASD and possibly my favorite book ever is Send in the Idiots by Kamran Nazeer. I guess it's technically an ASD memoir, but what's the difference between it and this? I think I like Send in the Idiots because it is about functioning. Some of the subjects of the book are "lower-functioning" than Tim Page, but while Page focuses on all the stuff he did wrong while he was growing up, Nazeer talks about how he, his friends, and their families find ways of getting around what's hard for them. One of his subjects committed suicide, but Nazeer tells us how she taught herself to ride a bike when her parents were at work, to surprise them, and how she learned to read a bus map through trial and error.

Also, when Nazeer talks about how people made fun of Elizabeth at the mall or Randall's boyfriend didn't respect him, I don't get the impression he thinks That's Just How It Is For People Like Us. He says he wanted to kick Randall's boyfriend in the shins. Nazeer launches into long, beautifully pedantic explorations of what a conversation is (with the implication that ASD people are missing out), but he also beautifully, pedantically explores what a dick Randall's boyfriend is for treating Randall like an okapi instead of a person.



completely unnecessary visual aid because okapis are rad-looking

Nazeer's book doesn't focus on his experience like Page's New Yorker piece does, but I don't think that's really the big difference. I think it's just old social model vs. medical model, after all. And that is an inaccurate way of talking about it because medical model means freaking out about how bad a disability is. But I think freaking out about how interesting a disability is, if less dangerous, can be just as annoying to read. I don't feel like looking at one person by themself. I would like to hear some opinions, about goodness or life or love or something. Page's piece is informative if you don't know anything about AS but Send in the Idiots altered my brain. I reread it at least once a year, I love moving my mind through those beautiful squares, if a book can be a home it is my home. It changed what I wanted to do with my life. And also, what I thought my life was.

I never had a blog with tags before and sometimes I get carried away. I like "kartheiser is magic" and I got excited when I realized I kept posting about The Sound and the Fury so I could make a "faulkner" tag. But my favorite tag is "how to be human" and I don't know exactly what it means but all of my posts that I think are worth reading are tagged "how to be human." Sometimes they're about how I try to work around certain aspects of ASD, sometimes they're about things that I think are ableist, and sometimes they are just about my attempt to figure out and implement a moral course of action in some situation. I guess I think those are the interesting things about ASD and ASD in the middle of nowhere is kind of boring. If a disabled person lives in the middle of a forest they're not even disabled, unless the trees think they're a disabled version of a tree.

In conclusion I will just tell you something that's only mildly related and maybe it isn't clear why I think it is. Today when I was walking back from my horrible exam, I thought about how I would visit my friend in his room last year and the year before that. Often he was asleep or not there and I would feel like a creepy stalker; many people have that effect on me, but him more than anyone else, because I just long for him like I long for Send in the Idiots and the particular kind of sneakers I have gone through ten pairs of. Anyway, when he was there, sometimes he was doing physical therapy exercises with his jars of putty. He had all these jars of putty that were different colors and the different colors indicated that the putty had a different consistency and was appropriate for a different time, or different exercises, or something. All I know is that I would sometimes start playing with the putty without thinking about it, and my friend would get mad.

When I came by and my friend was doing his exercises, he would often be watching anime on his computer and he'd always be embarrassed about it. It was always really bad anime about ghost hunters or something, and my friend is kind of a snob, but sometimes he wouldn't be too embarrassed to let me lie down or sit down and watch anime with him. He'd try to explain the plots to me, sometimes.

Then sometimes my friend would go to the vending machine. When he walked around school, he would always sing. His voice has a crystalline quality and he always sang folk songs and show tunes with the result that the words, slightly smudged, ended up sounding ghostly and sweet as he moved through the halls. On his computer, checking Facebook, I'd know my friend was coming back when I heard the heavy uneven sound of his steps trudging under the clean white verse.

Like a person

My post yesterday was supposed to be about something else, but I got distracted by the fact that in high school my homosexuality created "special needs" that I had to advocate for. I think it's a funny story and also shows that, while disability is real, many of the worst aspects of having a disability aren't innate to being disabled.

My friend Niyatee said that she interacts with me as though I don't have AS, and she wondered if that was ableist. I don't think it is. At the same time, I like that she thought of it and doesn't buy the idea that people with disabilities, or any difference, should be treated "like everyone else." The "like everyone else" model actually puts a lot of pressure on people who are different to reduce their difference to one very measurable, nonthreatening thing, and be "like everyone else" otherwise. For example, for my teenage self homosexuality couldn't just be as simple as having a girlfriend or wife in the future while a boyfriend or husband was in everyone else's. Because I was attracted to girls, it affected many aspects of how I related to my peers. I ended up feeling like a failure because I couldn't keep my homosexuality "to myself," as I saw it. It was messy. It spilled out into other people's lives.

There probably are lesbian teenagers who have completely asexual friendships with straight girls. Similarly, there are disabled people whose only difference from nondisabled people is that they are in a wheelchair; and while it's hard to find an ASD example of a "like everyone else" disabled person, there is probably someone out there who has developed good social skills and doesn't have trouble with routines and obsessions, but has to use typing to communicate. If you can accept that this person types, you're good; otherwise you can treat them like...well, you know.

One of my favorite books contains the gloriously inarticulate sentence, "Mike needed to treat Randall like an autistic person. But he also needed not to treat him that way." The book is Send in the Idiots by Kamran Nazeer, and Mike and Randall are based on a real couple. Mike was great at advocating for Randall when people tried to bully and manipulate him, but he also patronized Randall, overestimating his guilelessness and dismissing his poetic talent as a savant skill. While Mike was admirably attuned to Randall's impairments, he didn't recognize the parts of Randall that didn't fit a stereotype. To supplement Nazeer's incoherence with my own, the best way to treat other people is always "like a person." Not like everyone else. Not like a gay person or a disabled person or a person of color.

My school treated me like everyone else in a way that was damaging. But on the other hand, what would it have meant for my school to treat me "like a gay person?" I guess, based on my dancing and changing problems, you might institute a system where gay students are classified as the "third sex" we were considered to be in the early twentieth century. It would not be standard practice for gay students to change with the same gender; you would set aside another room. If the atmosphere was especially puritanical (the type of school that doesn't allow boys in girls' residential halls, for example), you would have to set aside more rooms depending on how many gay students there were, with one gay boy and one lesbian changing in each changing room so there was no possibility of misconduct.

I have a feeling that if a school did this, it would be seen as a bad thing by almost everyone. Conservatives would complain that the school was recognizing an "alternative lifestyle," while liberals might protest that it treated gay people like another species. I would have liked it--after all, it's a policy tailored to fit my teenage self--but other gay kids would have been embarrassed that it was made into such a big deal. And of course the policy doesn't mention bisexual or questioning students, who would presumably make up a "fourth sex" not allowed to change with anyone. My school ignored the ways same-sex-attracted students were different, but the third and fourth sex system overestimates it, and assumes that all SSA students are different in the same way.

Actually, putting aside the fact that my school treated me like everyone else in a way that caused special needs, once I actually had those special needs certain teachers did a great job treating me like a person. As I mentioned in the previous post, Mrs. M. either understood, or didn't understand but respected, why I had so much anxiety about dancing with girls. She was also supportive when I dealt with my self-consciousness in idiosyncratic ways, like refusing to workshop my plays until my classmates had signed a contract saying they understood that it was natural for a gay person to write plays about gay people, and that they wouldn't be surprised or judgmental when that plot element appeared. As has probably been obvious, my gay person special needs were completely interconnected with my Asperger's special needs, which my teachers were equally sensitive to even though not all of them knew about my diagnosis. I didn't have to invoke a label for Mrs. G. to believe me and help me when I explained that I couldn't learn a dance by watching other people do it. I almost think it was better without a label, because it meant that Mrs. G. didn't think of a book or movie about autism, but just helped me with the specific problem that I had.

My friend John doesn't believe I have Asperger's. He says that I seem normal and people are overdiagnosed with trendy disorders. But he doesn't make a big show of being amused or baffled by the way I talk, which is something annoying that most people do when they don't know I have AS. This summer, John and I planned to meet in New York City, and based on what he already knew about me, he assumed I would have trouble taking the subway. He offered to take an unnecessary ride so he could find me at the train station and I wouldn't have to take the subway alone. This is a really good example of knowing and thinking about someone's challenges, without making a big deal out of how they are different. And I couldn't care less if John thinks I have Asperger's, because he treats me like a person.

One of the first times I talked to Niyatee, she kept saying how she liked the way I talked because "you just say things straight out." I said that I wished everyone liked it; I actually didn't, because it made it hard to write emails to professors or prospective employers. Then Niyatee said she felt embarrassed because she'd forgotten that I had Asperger's and had assumed I talked the way I did on purpose. This is the only time that she ever needed to consciously think about my AS, and because that was more than a year ago, she thinks it means she might be treating me "like everyone else." But actually, all it means is that when she finds out things about me she just finds them out, and doesn't feel the need to divide them into piles called Amanda and Asperger's, which is good, because those are really difficult piles to make and it also doesn't matter.