30 November, 2009



For some reason, this is how I feel.
Harry: Roger's hair and skin are the same color.
Pete: Not really.

can a visible disability be an invisible disability?

I'm just noodling to avoid writing my paper but one thing: a post about my fake friend David, who has cerebral palsy. Actually he is a real person but I am just pretending his name is David because I feel like I'm spewing his personal information all over the Internet. Except, anyone who even goes to my school will probably know who I'm talking about, so maybe this is a lost cause and I just have to hope no one from my school reads this. SORRY DAVID (can you forgive me since I named you after your favorite person?).

Cerebral palsy is not considered an invisible disability. However when people meet David they don't necessarily immediately understand why he moves differently. Our friend Liz thought he was drunk. I somehow expected David to be "off" socially or mentally (which I know is really fucked up, but in the interest of total honesty; on the plus side, it's probably why we're friends, because I was less shy around him than I was around other people). A few weeks into our first year of college, I remember telling someone how much I liked David. "Is that the awkward guy?" the person asked.

"Well, he's disabled. He limps," I said.

"Yeah, him, he moves kind of awkwardly."

I thought this was a strange way to describe someone who limps. "Awkward" is the way I would describe someone who seems really shy or says socially inappropriate things, not someone who is physically disabled. (I don't remember verbatim what was said, so it may not be clear, but it definitely was clear at the time that the person was using "awkward" as a physical descriptor.) Later I mentioned this to my dad, and my dad said the person was being tactful. I think this is weird too, because "awkward" seems like a worse thing to say. It seems to imply something negative, while saying that someone limps is just a fact. And "awkward" sounds like it's about David's personality.

I don't think it is tactful or polite to describe someone's body using a word that sounds like it is describing their mind. People tend to treat David as otherworldly, and although this is partly because of his personality (he can be very enthusiastic and guileless about things), I suspect it's also because he moves differently. I would guess it's different when he uses a cane and I would guess it would be different if he used a wheelchair. But because there's usually not this giant object broadcasting "physical disability," I feel like people read his CP as body language.

One example of what I'm talking about is the fact that I assumed he had some sort of social or intellectual issue. Obviously I soon found out this was stupid, and will never react to a physically disabled person that way again, but I still can't pin down why I reacted like that in the first place. Another example is that people tend to assume he's asexual and even act sort of disturbed when they find out he's not. I've sometimes gotten the impression from girls he's been interested in that they think it's somehow unseemly for him to be interested in them. But I don't think that anyone is sincerely thinking, "DISABLED PEOPLE SHOULDN'T HAVE RELATIONSHIPS," they're just thinking "...but it's David." Which, okay--but why is it David?

The only 100% for sure example of people equating David's physicality with his brain is the time a professor contacted the disability office because she thought that David talked too much in class. This is straightforwardly ridiculous and offensive. But I can't help but wonder if this whole implication that David is special/asexual/"awkward" comes in part from his disability. And I don't think people think about it. I think they would think, consciously, that it's awful to think about someone with a disability that way. But because David looks different without looking stereotypically disabled like he would if he was in a wheelchair, I think it is likely that people react to him with unconscious ableism.

I think this is an example of a supposedly visible disability actually being an invisible disability. And I think what this means is that the disability is just taken as part of the person's personality or essence, and not consciously recognized as a disability. I'm hard pressed to say this is always a bad thing; I certainly wouldn't like someone to behave as if my disability is something separate from me. But I think most people with physical disabilities do want to be separated, and I know that David does. Sorry I'm rambling and not really making a point. I just think it's interesting. If I was any good at being in school, I would want to write a thesis on the way the average person reads other people as disabled and how they conceptualize that.

hey wait

when normal people stub their toe or whatever, don't they usually shake their hands and jump all over the place? Why do they think it's weird for us to do it then?

Bullshit Close Reading

I am cheerfully gearing up for another Bullshit Close Reading on a Latin paper that is due tomorrow at noon. I'm supposed to use a lot of sources. But I can't find any books in the library that are helpful. Looking for sources and synthesizing them is my least favorite thing to do, and sometimes I scrounge around and try to convince myself I will do it, but in the end what always emerges is a Bullshit Close Reading. A Bullshit Close Reading isn't really bullshit, it's just not the assignment. It just means you focus really hard on one document and try to say smart things about it.

In America, especially at Oberlin the capital of feelings and weed, I frequently receive B-s or even B+s on my Bullshit Close Readings. "This isn't really the assignment but a good close reading!!" the professor scrawls loopily, like they do, adding smiley faces at particularly striking parts. Unfortunately this doesn't seem to be the mindset in the UK. I just received back a Bullshit Close Reading with a 48%, which is not as bad as it sounds because a 50% is a C-, but it's still worse than I would have expected. The person who graded it left a lot of marks because I used contractions and randomly went off on a tangent about how illuminated manuscripts are like affective piety because they make Christianity accessible to everyone. To be honest I think they just didn't know what affective piety is and they got confused. I'm not trying to be a dick and I know that Bullshit Close Readings are sort of, well, bullshit, but there's merit in them too, they're passionate and full of rhetorical flair! Don't box me in, Paper Grader!

I also didn't know that in the UK the title of your paper is supposed to be the title of the prompt. You're not supposed to make up your own title. I don't even like making up my own title but I thought I was supposed to like you are in America, so I don't think it's fair that I got points off for this. Well anyway, I am writing about What We Can Learn From Pro Archia. I think we can learn that literature was sort of important but not really, because Cicero has to make a big deal out of how reading poetry makes him a better lawyer--which is kind of like saying it's okay to be ASD because it helps you invent better ways to kill cows. ASD/poetry must be inherently bad if you're flailing around trying to justify it like that.

Anyway. Here we go. Maybe I can get a 50 this time.

Plutot la vie

I wish I could find a video of the original production of Angels in American because from what I've heard they had actual gay people playing the gay characters. I'm not a stickler about this by any means; I don't think it's wrong to cast straight people to play gay people. I just think they frequently do a bad job.

So, the thing about the TV version of Angels in America, with the guy from Weeds, is that the guy from Weeds doesn't play a whole character. I will explain. The main character in Angels in America, Prior, is a stereotypically gay man. He likes cross-dressing and making campy jokes. At the same time, being stereotypically gay is not just about what you do, but who you are. I'm not an expert on being a gay man but I'm just saying that important qualities tend to be suffused throughout one's entire being.

The guy from Weeds doesn't know that, though! He only acts stereotypically gay when he's saying and doing things that explicitly require it. The rest of the time he acts stereotypically straight. Sometimes this even means reading lines that are supposed to be facetious with a completely serious face. When there are campy moments, they almost seem more dramatic than the actual dramatic moments, because they're such a change and seem to take so much effort. This is called bad acting because it's not playing a whole character. Also, it's offensive. Prior is an awesome character because his stereotypical homosexuality, which is generally associated with weakness and low moral fiber, is completely tied up in his heroism. This is revolutionary and the Weeds guy just doesn't see it; he doesn't understand how to read serious and/or heroic lines in a stereotypically gay inflection because he's still stuck on hero=straight.

I am not really making a larger point here but I just thought of this because I watched New Moon so I have Mormons on the brain. New Moon was one of the strangest movies I've ever seen and I will post about it in the near future.

28 November, 2009

Like a person, part three

This is just messing around and may not be organized very well. But basically I'm thinking about the idea that if someone has a disability other people are supposed to be okay with them doing things that they wouldn't be okay with otherwise. This idea can be seen on the Internet, when people vigorously attack the strawman of "people who pretend to have Asperger's as an excuse to be assholes." The implication is that it's okay to act like an asshole if you really do have Asperger's but we have to be careful to keep people who don't have Asperger's from getting this special Asperger's right that non-Asperger's people don't deserve.

Last month when I went to an Edinburgh and Lothians Asperger's Society meeting, this idea was taken for granted again. We were talking about police harassment of ASD people. One guy shared how he walks around a lot at night, and was stopped by the police several times and questioned about his "suspicious behavior." He almost got in trouble because his answers to the questions were too literal and the police thought he was being rude. Everyone began talking about how police could be trained not to treat ASD people badly. Then another guy spoke up and said that in some areas people with ASDs have a badge that identifies them as ASD, and that they can produce the badge if they are in this kind of situation. He said he thought this was a good solution "because if someone looks suspicious and the police are questioning them, they might say they're autistic as an excuse." The implication is that if someone "looks suspicious" and their reason for looking that way is not a diagnosed disability, they must actually be suspicious.

I disagree. What if someone is a little odd, but doesn't have ASD? What if they look suspicious because their husband just died and they're in shock? What if they have undiagnosed ASD? I generally think that people are not very good at judging what "suspicious behavior" looks like, and while ASD people are one group that gets fucked over by this, we're not the only group. It's not necessary for the police to be harsh on people just because they look weird, and it's ridiculously medical-model to make people prove that they have a good reason for looking weird, instead of for the police to just approach weird-looking people in a gentle way instead of making snap judgments.

I think the reason there's all this guarding of ASD identity, and panic about people using it when they supposedly don't have a right to, is there's this idea that if someone has ASD it's okay for them to go around punching people in the nuts and robbing banks. At least, that's the way people act about it--that if we accepted a wider range of behavior, then we'd have TOTAL CHAOS. But I am not okay with anyone hurting other people and I don't care if they have a disability or not. I think a lot of people feel this way. Which is why the whole thing is stupid.

I'm not doing a good job explaining this and will maybe come back to it later, but I have two stories that I think are interesting:

1. When I was in ninth grade, I was friends/sort-of-girlfriends with a girl named "Joan" (not really). She frequently said and did things that were really mean and really rude, but it never, ever seemed to come out of malice, just from not thinking about what she was doing. Like me, Joan didn't really have a sense for what was hurtful and had to put in effort, and at that point, she didn't put in the effort very much. (She has a diagnosis of ADD and I'm hesitant to start armchair-diagnosing her with other stuff; she was under a lot of pressure at that age and that may account for how easily she got upset and how insensitive she could be to other people.)

Anyway, Joan really wanted to see the movie Saved and she sent me a link to the website. I went and looked at the website. When I was younger, loud noises really upset me and made me feel embarrassed, so I had an aversion to watching videos or listening to music, or really doing anything that involved sound if I didn't have to. I also really don't like to watch videos or listen to music when other people are around and I think I may have looked at the website when I was at school so that's another reason I didn't watch the trailer. But neither of this is the whole reason--another part may just be that I was in reading/looking at things mode, and didn't want to switch to a watching things mode. This was all very unconscious stuff and I didn't consciously think about my decision to not watch the trailer. But for the record, it was an ASD thing.

I told Joan that the movie looked good, and she assumed I had watched the trailer. A few days later at school, she made a reference to something that was in the trailer, and when I didn't get the reference, she was really mad; she felt that I had lied to her. She brought me to the school computer lab, where there were some people, and started to make me watch the trailer, and I panicked and left. Later, Joan wasn't talking to me and I (tearfully, probably) kept trying to get her to stop being mad. I'm not sure I was even conscious of why I didn't want to watch the trailer, so it was hard to explain that I had acted out of discomfort and panic rather than because I didn't care about her interest in the movie. However, I guess at some point she realized that it was related to me having Asperger's, and said, "Oh, it's an Asperger's thing?" At that point no one was in the computer lab, so I steeled myself and watched the trailer with her, and we were reconciled.

If you can't tell, what you are supposed to get out of this story is that if someone does something that you find insulting, but the person really likes you and doesn't seem like they would want to insult you, and they seemed to be very emotional and acting out of instinct when they did the thing that insulted you, you probably shouldn't be insulted because they probably had a reason for doing it that had nothing to do with you. And in my opinion, it's dumb for you to need to know what the reason is in order to not be mad at them, because there isn't only one possible good reason for doing something. If I had an aversion to movie trailers for some other reason, would Joan be justified in treating me that way? I don't think so.

2. For about a year, my best friend A.T. and I have been talking about maybe living together after college. This summer we were doing something or other in the city and while we were walking around, A.T. discovered that I thought it was feasible to drive from New York to Washington state, and said "Are you joking?" This isn't actually the whole thing; it's sort of the last straw. Basically A.T. is good at cooking and taking public transportation and finding her way around and I am really incompetent at all of those things and almost always rely on her to guide me through them when we are together. And sometimes I ask questions that she thinks are shockingly stupid.

As we were getting on the train to go to her house, A.T. said that the only reason she was sort of leery about living with me was that I had so little common sense and wasn't able to find my way around. She said that she could never rely on me to meet her anywhere, and would always have to help me with things and worry about me getting lost. She said that since I'm a year older than her, she hoped I could work on these issues in the year between our graduations, so I would be better at it by the time we started living together. When she said this, I was all hurt and acted passive-aggressively pissy the whole time we were riding the train, and we ended up sort of having a fight.

I guess this story is not quite as clear as #1 because it's hard to tell what you're supposed to be getting out of it. Well, what I get out of it is that it's a story about me being self-pitying and thinking that I deserve special rights because of my ASD. I don't think it was appropriate for me to pick a fight with A.T. because she said those things. No matter why I have those challenges with common sense and getting around, they might be hard for someone else to live with. They don't become less challenging because I happen to have ASD. A.T. doesn't have a responsibility to be okay with things that would otherwise bother her, just because I have a disability.

What a messy post. Just like I expected. Anyway, what I'm trying to say is:

A. If someone does something that offends you, you shouldn't get mad at them if they don't have bad intentions.
B. If someone does something that's weird, you shouldn't have a negative reaction if they're not doing something objectively bad.
C. If someone does something that bothers you--not because you think they're being "weird" or "offensive," but something quantifiable that they do that bothers you--it's okay for you to say that it bothers you and try to avoid being bothered by it in the future.
D. You should apply these rules to everyone.

Hairography

wow I'm watching Glee and I can't even believe what a douche Mercedes is (oh, and everyone else, apparently). THANKS FOR HELPING OUT THOSE DEAF PEOPLE WITH YOUR AWESOME SINGING!!

I enjoy Kurt's scheming, but that's about it. Why would someone ever think it's a good idea to make a TV show like this? Even the good parts are just a bad version of Spring Awakening.

(By the way my friend is deaf in one ear and having a conversation with her is exactly like having a conversation with a person who isn't deaf, unless her hearing ear is facing away from you. Which would not be the case when you're sitting face to face with someone. Although, isn't that guy from some Joss Whedon thing or other? It's nice to see him.)

When You're Spastic & It's Serious



Francisco Hernandez, you're my hero
you rode the subway from one to zero
when police officers and teachers are gone and dead
I hope all your favorite images are still buzzing in your head

like trains in the night you will find yourself all right
deep underground where you are safe and sound
and no one looks at you 'cause they're going somewhere too
and the map in your lap is the only place you've found to be loved

Francisco Hernandez, stay in school
redeem yourself with genius, holy fool
and if you ever make the cut, there is nothing there for you
when you're spastic and it's serious, they don't know what to do

so take off and fly in the shuttle in the sky
the mess in the dirt, the quilt that is the earth
your peanuts and the wings on your lapel, little things
that hold you to yourself when your mind is smashing through the sun

It isn't funny 'cause it's sad
it's funny because no one's mad at you now
take off your sneakers, leave them on the kitchen floor
and wrap yourself in sheets

27 November, 2009

ABA disclaimer

Okay, so the thing is, I think ABA is a really good way to teach people with autism or really anyone. I mean, the method. It's a good method. I would probably want to be an ABA teacher if not for the fact that I might be expected to train the kids to do things I think are stupid and/or harmful; I'm afraid it would be too hard to find a school where I wouldn't be expected to do that. But that's not how it has to be. If you're teaching people useful stuff and being ethical, I think ABA is really good.

It's just that in my very brief experience with it, I didn't think they were being ethical or that they were always being useful. They did some stuff at that school that I thought was really great, it was obvious that kids were improving their language and lifeskills and it was wonderful to see. A lot of the people who worked there were very nice and I'm sure had the best intentions. However, I just thought that they weren't thinking about ethics, and I don't think anyone is so low-functioning that ethics don't matter. I wasn't there a very long time so I don't want to make sweeping statements, but it also didn't seem to me that it occurred to them to try to take ASD perspectives into account. (Well, it seems self-evident to me that if you ever talked to an ASD person for one minute about stimming, you would not be treating stimming as a bad behavior, so maybe I can make that sweeping statement.)

I read a few comments in response to my post about my internship that sounded (to me) like they were taking my post as a post that shows what ABA is like. ABA is not like anything, it's just a method. I didn't mean to make any statements about what ABA innately is.

Tattoo ideas

This time yesterday I decided I was going to get a tattoo. I was walking past a tattoo shop with my friend LB, who is visiting, and she exclaimed that we should both get tattoos there in the next few days. I immediately agreed and started agonizing over what to get. Nine hours later when we were falling asleep, I kept getting really upset and telling LB, "I wish I could do this, I wish I was different. I wish someone would fix me, I wish I was a real person." Then I prayed until I fell asleep, and woke up about fifteen minutes later and thought, what the fuck, I can't believe I was going to get a tattoo. I'm not really sure what getting a tattoo was mixed up with in my head; it seems like dream logic. It's hard to believe I was thinking like that in real life.

My opinion about tattoos is that they're wonderful when they're done right but I think it's stupid to get one just to get one. I don't see the point of having a really small plain image or phrase on your hipbone or your shoulder. I was thinking of getting one on my knee, but it would be hard to decide which way it should face; really, the only place I'd definitely be happy with would be my arm or my wrist, which is obviously a big decision because it's hard to hide. And I still live with my parents and they'd be upset (not to mention I'd be doing it with their money, which seems wrong). And I'm too young, in terms of independence and life experience, to really know what I'd be getting myself into if I got a noticeable tattoo. It's better to wait until I'm a little older. Then I guess I'll get something on my arm. And when I'm a little older than that, maybe I'll get a half-sleeve. And so on. (I wonder if it's possible to get the opposite of a half-sleeve, like a long glove. That would be so incredibly impractical and so incredibly awesome.)

Anyway, I feel weird that I got so impulsive and emotional about such an odd thing. Having LB here is really nice and I guess I feel more hopeful about life. Maybe I was trying to express that? It's not like me to make a lot of decisions and pronouncements I don't understand. But I am going to make a list of my ideas because I think they're good ideas.

1.

Harriet the Spy. This is something I've wanted for almost three years and there are lots of good reasons for wanting it. I've been into Harriet the Spy since I was eight and my obsession rises again every few years. Obviously writing is really important to me and I started because of her. When I was about 12, which I guess is when my second or third round of obsession happened, I saw Harriet as sort of an ASD role model who was actually interested in things and didn't care for politeness. (When I was mad at my mom, I would call her a "bridge-player," and I did it enough that it stopped being novel and started being just the same as calling her a bitch.) During my most recent round, when I was 19, I was feeling alienated from other gay people and comforted myself by thinking about how awesome Harriet and her creator, the super gay Louise Fitzhugh, are. Except, despite the fact that this is the most sensible tattoo ever, it's lost a bit of its appeal for me in the past few months. Which is probably proof that I shouldn't get any tattoos.

2. (the one on the far left)

Viola da gamba. Basically I have this giant thwarted love for medieval and Renaissance music. My high school had an early music group, which sounds really posh but was actually pretty messy and unfortunate for reasons I won't go into. But this was good for me because it meant that despite not being able to read music I was an important member of the group just because I was sincerely interested, and when I was a senior I ended up playing viola da gamba, which is a precursor to the cello which is 100% cooler in every way but fell out of favor because it's not very loud. I really loved playing it. Of course, because I can't read, I'll never be able to take part in any decent early music group in the Real World (and the Real World includes my college, which has a big deal conservatory--therefore I can't even get into classes where I could learn to read, because I'm not in the con). Besides, I'm not exactly good at playing even if I could read.

So early music is this thing that's probably gone forever from my life, but will always be a part of me. One of the only really powerful interesting things in my life when I was really sad and lonely; something I threw myself into because I had to. Also, my viola da gamba teacher had a really strong effect on me, both positive and negative, and that's something that will always be part of me too.

3. / / /

Corinthians lion! This is what I want the most and it is the one that would be the most difficult to get because I am very bad at communicating to professionals what I want (I think this is because when I was a kid, I was considered to be a holy terror when I got my hair cut because I was just like GET AWAY FROM ME STOP TOUCHING ME; I haven't found a happy medium between being like that and being a doormat, with the result that I end up with incredibly awful haircuts and have taken to just cutting my own hair or getting LB to do it because I'm not afraid to tell her to stop). Anyway, I need someone I trust to design my Corinthians lion before I get it. I want it to look sort of like a crest, although I don't actually want it to be a crest. IT'S HARD TO EXPLAIN.

I really loved the Narnia books when I was a kid and like the idea of getting a tattoo related to a childhood obsession. Narnia was a big part of my relationship with my dad when I was a kid, so there's that too. Most importantly, I love C.S. Lewis's apologetic books and they've had a big influence on me (that's understating it; I wouldn't identify as Christian at all without having read them). So having a Narnia tattoo is kind of a tribute to CSL in general, and therefore a religious tattoo.

I love Corinthians 13 just as much as everyone else and their mom does. In fact it is right below my palm right now because I wrote lines 8-12 on my computer keyboard. I mostly like it for the Platonic stuff, but "caritas numquam excidit" is the only phrase short enough to make a good tattoo. Besides, it's always true. It is usually translated as "love never fails" and then people use it for their wedding vows and stuff, which is dumb, because sex fails. Limerence fails. But caritas doesn't mean either of those things, it means mercy.

I think this is a tattoo I will definitely end up getting once I can design it/am older, because it is really important content-wise, is something I'll always believe, and would look awesome.

4.

Puddleglum is a Narnia character. He's a Marshwiggle. A lot of what I remember about him is just saying the word "Marshwiggle" a lot with my dad because we liked saying it. Puddleglum is usually whiny and grumpy I think, which makes him the perfect tattoo for me.

But I mostly want him because he says this: "Suppose we have only dreamed, or made up, all those things--trees and grass and sun and moon and stars and Aslan himself. Suppose we have. Then all I can say is that, in that case, the made-up things seem a good deal more important than the real ones."

The main problem with getting him is that the only picture I could find that I liked (the one above) might end up looking sort of gross on my arm. So this is another thing where I wouldn't just be able to bring in a picture and say "do this."

25 November, 2009

And

About the New York Times article: it was pretty good. I liked that they focused on Francisco's experience and didn't emphasize how difficult it was for his family. The picture is really weird though; why did they have to use a picture of him playing a video game and therefore looking (because you can't see the game) like he's staring into space? There must be a picture of him smiling at Christmas or something. I mean, I understand why they like to have pictures of people doing everyday things, but it just seems kind of othering to use a picture where he has an expression like that.

The coolest/saddest thing ever

this morning I was talking to my friend Ralph when I left to get a soda. When I returned to my computer Ralph had gone to bed (he lives in California). Before signing off, he'd written:

so two asperger things
8:54 AM 1. a guy in my program has it and everytime I talk to him I remember that and go "FUCK! I WANT TO HANG OUT WITH AMANDA"
2. DId you hear about the kid who ran away from home and spent a week living on the subway in NYC?


I had not heard! But I have now. The kid is named Francisco Hernandez Jr. and he lives in Brooklyn. He's 13 and was diagnosed with Asperger's three years ago. When he's under pressure, Francisco (in the words of the doctor who diagnosed him) "freezes in confusion because he does not know what to do or say." On October 15, he was yelled at for not completing an assignment, and the school called his mom. When Francisco called his mom to say he was coming home, his mom told him that she wanted to have a serious talk with him. He was so anxious that he got on the subway and continued to ride the subway for 11 days, using his bag as a pillow and using the ten dollars he had on him to buy junk food at subway stations.

His parents feel that the police didn't work hard enough to find Francisco because they are immigrants and didn't "understand how to manage the situation [or] speak English very well." A detective told his mom that Francisco was probably staying with a friend--but he doesn't have any friends. Francisco says he "stopped feeling anything" while he was riding the subway. When asked what he thinks about the fact that no one noticed him or talked to him for eleven days, he said, "Nobody really cares about the world and about people.”

This story is both the saddest and the coolest thing ever. Like many ASD people, I love trains, and living on a subway train is the kind of thing I made up stories about when I was a kid, writing up elaborate plans of how I'd survive. Francisco has accomplished a feat of E. L. Konigsburg proportions. There's also something iconic about the unselfconsciously gloomy statements he made to the New York Times--"nobody really cares about the world and about people"? I'm pretty sure he could become the next Edward Scissorhands or Jeff Mangum.

But while it's nice to imagine Francisco bragging about his adventure to his friends when he's 19 or 20, the time when this will be just an awesome story is a long way away. The time when Francisco will have friends is, probably, a long way away, and I bet it seems so far away that he doesn't believe it exists. He said he was planning on staying on the subway forever; he lost all sense of time. I think people lose their sense of time when they think that things are so bad they'll never change.

The words "eighth grade" are the two most painful words in the English language, at least for me. But I still believed in a better future, sort of; not with all my heart, but enough that I didn't try to disappear from life altogether. I held on. It breaks my heart that Francisco didn't believe there was anything to hold on for, that the world was just too scary for him to stay.

I want to write him a letter. I want this period of his life to be over. I want him to go the school where his doctors want him to go, where he can be with other kids who have disabilities, instead of staying at the school that claims he's doing fine but terrified him into disappearing for two weeks. I just want him to be older, playing video games with his friends and saying, "hey, did I ever tell you about the time I ran away and lived on the subway?"

this is a comment I made on someone's livejournal

I don't think you should try to talk to your friends "the way friends talk to each other." Passing for normal is all very well in situations that don't require sincerity, like ordering takeout or hanging out with someone you don't know very well. But I feel like if it's a more close situation where someone is talking about their problems, you shouldn't try to have a socially appropriate reaction, you should just work hard at being respectful and supportive.

For me this means that if the person is venting I will just listen and be interested in it (I mean, I do think people's problems are interesting, especially if they're my friend, so this isn't hard). If they seem to have a more "fuck, this so horrible, I don't know what to do" attitude instead of just wanting to express themselves, I'll try to make suggestions about how to make the situation better, asking them questions so I can better understand what's going on.

I didn't have many good friends until like two or three years ago so I thought all this stuff was overwhelming. But it got easier and now isn't really that hard for me. Of course, I'm not trying to act normal; I guess the normal way to comfort someone/listen to their problems might involve modulating my voice in a certain way, being more physically affectionate, and asking more questions than are necessary, just to "show that I care." If I was trying to act normal, I'd probably do a lot worse. But I also think that acting normal would be wrong and I wouldn't be being a good friend if I wasn't being sincere with someone when they are being sincere with me.

I don't know if this is at all helpful. I just think that "doing what people do" is a good and useful thing but only at certain levels. And I think that when you get to a talking about problems level, you should be able to act non-standard, and if the person is a good person, they should understand.

I'm so butch I wear nightgowns

I was sort of inspired by this post: on gender and disability. Although what I ended up saying might not be related at all.

Gender is weird. I sort of feel like because femininity is the default it's invisible, so when you actually use words like "femme" and "girly" it implies someone who wears high heels and dresses and all that stuff. I am pretty alienated by butchness (well, not that I'm alienated by other people being butch, but I start to feel like that's the only acceptable way to be a lesbian and it makes me feel bad because that's not me). However, I also don't wear dresses etc.

If I can get away with using the word "faggy" without being a gay man, that's the best word to describe my gender expression and the gender expression I'm attracted to. For example, in high school I had a crush on a girl who loved theater and fantasy books, cried in class, wore baggy clothes that didn't match, and had really long hair. My holy trinity of attractiveness is something like: 1. emotionally vulnerable 2. "off" and intense 3. pretty (I'm talking about a physical type, not gender expression or how attractive I find someone in an objective sense). I tend to get gloomy about my chances of ever having a relationship because this is a pretty irregular gender expression even for straight girls, and doesn't seem any more common for girls who aren't straight.

I feel like there is a kind of girliness that is about persona and not the way you dress. There has to be, because presenting in a feminine way isn't equivalent to wearing a red shirt instead of a blue one. I think this might explain why I am attracted to long hair without being attracted to dresses, earrings, etc. because having long hair doesn't require that much effort. It's like wearing a red shirt. But taking care of your skin, not having body hair, wearing makeup, having hair that is acceptable in a particular way (straight, shiny, healthy, possible dyed, in buns, in ponytails, in braids), wearing a lot of different uncomfortable pairs of shoes, and just combining different articles of clothing (I swear to God, when I see a girl wearing a skirt and a shirt underneath another shirt and a sweater, and it matches/looks normal, I feel like I'm watching someone sing an aria, except I can't just be impressed because I'm expected to be able to sing arias too and I can't, so I'm annoyed)...well, these are things that take lots of time and skill and planning and just the emotional ability to adjust to things. The last item is probably my biggest barrier.

When my hair isn't down, or I'm wearing a dress, or I use a different kind of makeup, or I'm wearing different shoes from the ones I normally wear, that's so distinct and makes such an impression on me that I would never do it on a day when I'm likely to be depressed or overwhelmed or need to do a lot of work. Lately I've been so depressed that I keep wearing the same pair of pants for way too many days because I can't stand to switch to another pair. So the idea I guess is, I constantly feel like I'm "not a real girl" and it's not because I have another identity as butch or genderqueer, but because I lack the abilities to do a feminine gender presentation. I really like having long hair, and I sometimes like clothes that are pink or have little-girl patterns like flowers or butterflies; I guess that these are red-shirt things, expressions of femininity that don't require more effort than expressions of masculinity.

The way I'm writing this makes it sound like I desperately want to present as femme and can't because of my ASD. That's probably not true. I really love blazers and flannel shirts and sneakers and jeans, in an aesthetic sense as well as in a "they're comfortable and I'm used to them so it would upset me to wear something else" sense. On the other hand, I really like dresses in theory and think about them a lot, and sometimes am even stupid enough to buy them, but I never actually wear them because it's too much. This isn't horribly upsetting to me though. To the extent that I am upset, I'm upset because I feel like there's no word to describe my gender expression and the gender expression I'm attracted to. It's probably silly to be upset about not having a word for something, but because I don't feel represented in either straight or queer communities, I do have a desire to articulate what it is that I am.

The title of this post is a line I wrote down when I was 14 or 15. I never wore pajamas until I was 13, and even then, I would wear a whole set of pajamas (and I still usually wore nightgowns). It took me until the middle of high school to figure out that other girls slept in pajama pants and t-shirts. Because my sleepwear, while supposedly feminine, was a deviation from what other girls slept in, I made up an inside joke with myself about it being "butch." Obviously it's not. But what word are you supposed to use for girliness that doesn't fit?

23 November, 2009

I want to write a post about my executive dysfunction but I don't know where to start

I should obviously write t-shirt slogans.

I actually don't know where to start, though.

I guess I'll just say that tonight I had some things I should probably do:

1. Go to the grocery store so I would have soda to drink in the morning.
2. Wash my face and put moisturizer on it.
3. Do my Latin exercises that are due tomorrow.

And some things it would be good to do:

1. Decide what my Latin paper is going to be on.
2. Write a story or something.

I couldn't decide which thing to do first so I literally spent something like two or three hours on the Internet. I would say I was perseverating or whatever you call it (I want to start calling it "stimming out" because I like the way that sounds) except that perseverating is actually fun. That would be like if I found a really cool blog that had written a post reviewing every episode of Mad Men and I read all the posts. Or if I spent several hours writing and recording a song, like I did last night. For the three hours where I was not-perseverating today, I just kept clicking around, refreshing different websites I like to read and reading a lot of things that didn't interest me much.

I had a vague idea that I should make myself some tea and do the Latin while watching Mad Men, but this never actually happened. Especially because I was having trouble deciding if it was even okay to have tea at night. And because I sort of thought it was better to go to the grocery store first.

So, finally, I sat up from the computer and said out loud, "Okay, you're going to the grocery store." I got up. I put my sneakers on. I put on a sweatshirt. I put my wallet in the pocket of my sweatshirt. I picked up my guitar and played a song once and I wanted to play it again, but I said out loud, "No, you can play it again when you get home." Then I went to the grocery store, bought the things I needed, came home, put them away, and sat down to blog about my executive dysfunction. And the fact that I should talk to myself more, because it really helped.

It's hard to even explain what the problem is. I think I have a much harder time here than I do at home, though. And I have a harder time in college than I did in high school. In high school, I always had trouble figuring out how to manage my time at home, but at school, I got lots of homework and writing done during my free periods. There was something about being boxed into the school day that made me feel more calm and have an easier time focusing on things and making decisions. At my regular college, I have trouble, but it's not that bad because there is still kind of a sense of "going to school," especially when I have more than one class in the same building. Once I get up and eat breakfast, I can just go to the building and stay there. Even if I have classes at different buildings, I can make sure I stay in educational buildings until all my classes are done for the day, and I can do work in those buildings. I am always incredibly early for class, sometimes even an hour early.

I think one of the problems here is that there aren't as many comfortable places to sit and do work in educational buildings. The library sort of stresses me out and also you can't eat there, and eating while I'm working helps me concentrate and stay calm. Also, because there isn't a campus, it is a big decision to decide to go anywhere. The only place I feel comfortable is in my room, which is of course a space where I'm not good at getting work done.

Another problem I think is that I'm alone so much here. A lot of ASD people say they don't like having roommates but I find that hard to relate to. When I have someone else around, it makes me more conscious of what I am doing, so while there's the obvious and not entirely positive result that I stim less, there's also the very positive result that I am less likely to be just fucking around, because I don't get lost in things so much when there's someone else there, even if we're not interacting in a conventional sense.

I think school is a little bit dumb because you are expected to freak out about things that don't really matter. Even though I like learning, it makes me feel happy to know that in two years I won't be in school anymore because I think being in school is part of the reason I get overwhelmed and have trouble planning things. It's hard to quantify things like "doing the reading" and decide what's important. I imagine that when I'm out of college I'll just have a job and I'll go there every day, and I'll pay my rent on time, and buy groceries...oh, fuck, buying groceries is hard, maybe life after college won't be easy after all.

The Half of It



I don't think it's easy to be me but I also
don't think it's easy to be you 'cause we live on this planet
where everybody wants us to pretend that we're human and we cry
but just stop kidding yourself, you know you laughed when all those people died

It's hard to be the only one of you, I know, I know it too
the lines inside your wrists and all the pages in your pocket
It will be different when I'm older, better when I'm smarter
but okay let's just fuck up now and bite our mouths to keep from starting

The half of it, the half of it, and you don't know the half of it
The half of it, the half of it, and you don't know the half of it

And you will be lonely for a while but I will take your hand in mine
put it in my pocket with the money I don't recognize
and the keys I bought at flea markets when I was twelve
slammed boys into the wall, didn't get caught 'cause I'm small

Let's go live under the bridge where Quentin Compson died
threw himself into the water 'cause he'd had enough of time
Wish we could see him, wish we could try to make him smile
if he only knew that girls like you would swoon over his frothing lines

To say to you, to say to you, nothing I could say would ever make it okay for you
To say to you, get away from you, I know I will never escape from you

Quentin, hold on
We love you like anything
Quentin, hold on
You're everything to me

Something I posted elsewhere

In response to a post about this (an article about a guy with Asperger's who ran over, raped, and stabbed a woman; it has been decided, because of his disability, that he won't be sentenced to death, with rulings about intellectually disabled people being cited).

So of course the post is full of comments saying "WHAT? Asperger's isn't the same as mental retardation! Maybe he's retarded too?"

I said this:

Okay, I'm commenting again because I have more time than I did before, and also the "well, it would make sense if he was retarded" comments are really baffling me. Do the people saying that actually know anyone who is retarded?

There is a way that I think autism spectrum disorders and intellectual disabilities can cause people to be violent. This is when a person experiences rage that comes from being overwhelmed and not knowing a good way to deal with it. For example, I know a severely intellectually disabled guy who sometimes gets upset for reasons he can't explain (he doesn't really talk), and when this happens he will sometimes kick or hit people or break things. His actions are no more evil than a child's tantrum, but they are more dangerous since he is 30 years old and fairly large. On the ASD front, when I was a kid, I would get very upset when I thought that people didn't respect me, were interrupting my routines, or were touching me too much or standing too close to me, and I would react by hitting them very hard. Fortunately I have learned better ways to deal with these problems. But I understand that some people with ASDs and intellectual disabilities can be overwhelmed by this kind of thing and become violent.

But it doesn't seem that this is what's going on in this situation. It seems like this guy went out of his way to hurt someone, and kept hurting her for a long period of time, and killed her on purpose. So I don't see how it is related to his disability.


As I'm sure I've said before, all this "ASPERGER'S PEOPLE AREN'T RETARDED!!!" stuff really grosses me out. Maybe because I get along with intellectually disabled people well and find that some of the ID people I know are more like me, in terms of personality, than anyone else I know. Especially the guy I used as an example. The way he reacts to certain colors and images that he loves is something I can really relate to, and I can relate to his anger and his strong emotional attachments. There are some intellectually disabled people who I feel more myself with than I do with anyone else. I feel that a lot of my struggles, in school for example, relate to issues that are similar to those many intellectually disabled people have. I understand that our IQs are really different but at the same time, I don't find them to be especially foreign to me and I feel very bound up in that community, if not actually a member of it.

But you know, that's not even it; I don't even think it's just my personal experience. It's just like, how can you be advocating for your own rights while dumping on another group of people. Implying that it would make sense if he had an intellectual disability! Like intellectually disabled people go around raping women and running them over with cars.

I was just thinking about Carnivale

because I love it so much and everything, and I always seem to briefly mention it in posts where I'm complaining about Glee. Although other people might disagree, I think Carnivale is an example of a show with disabled characters made by someone who actually respects people with disabilities.

The show is sort of hard to explain; it's ridiculous and I love it. It's a really slow-moving soap opera about a traveling carnival in the 1930s, and by the way two of the main characters are superpowered beings who are fated to enact a battle between God and the devil. Dan Knauf, the creator of the show, described the idea as, "What if you wake up in the morning and you're the Antichrist?" IT'S HARD TO EXPLAIN OKAY? I just think it's neat because it takes all this supernatural stuff and puts in a painfully ordinary context. The "hero" of the show, Ben, is a monosyllabic, spacey guy who's embarrassed by his powers and tries to stay awake as much as possible so he doesn't have prophetic dreams. And so on. The period stuff is also astonishingly good, as far as I can tell.

Now that I actually run through the characters in my head, I'm not sure what I was thinking saying that most of the disabled characters are played by disabled actors. A blind character, a paralyzed character, an intellectually disabled character, and a character with a limp are all played by nondisabled actors--there are plot reasons for most of these casting choices, although the scenes where they appear without their disabilities are brief. Also, understandably I think because it's hard to find Siamese twins, the Siamese twins and some other minor circus freak characters are played by actors who don't have those conditions. And the character with a limp is presented as being really torn up about it. And there are a few heartswelling moments where Ben cures physically disabled people by laying on of hands. Wow, what the fuck am I talking about? Why do I think this show is so great on disability stuff?

Well, if I recall correctly, there are several episodes where guest actors with actual "circus freak" conditions were cast. And that's something. There's also a physically disabled actor who plays an important role in several episodes (to say more would be a massive spoiler). But the main thing is MICHAEL J. ANDERSON, an actor with dwarfism who plays one of the main characters on the show! Now that I'm thinking about the show really critically, I guess I can see how Anderson's character, Samson, might be a "magical disabled person" character; he's quirky, wise, doesn't have much of a backstory, and delivers the exposition-y speeches at the beginning of the episodes just because it looks cool (in the context of the show, Samson doesn't know the information he says in the speeches). However, I think that it would be unfair to frame the character as simply "magical" because many other Carnivale characters have "magical" qualities. Also, as I think I mentioned when I was talking about Kurt on Glee, I think that what's important is not whether characters are stereotypical, but whether they come off as real humans. Samson is given tons of screentime and lines and does, to me, come off as a real human. He isn't the protagonist of the show, and there is a particular role that he usually plays in the plots, but he sometimes makes decisions that reveal surprising aspects of his character. He's just really cool.

And also, I just can't understate the importance of casting a really talented actor with a disability as a regular in the show and making him one of the major characters (the show has a lot of regulars, some of whom aren't featured very much). Actors with dwarfism often appear in movies and TV shows, but don't often get to stick around once the novelty has worn off. Michael J. Anderson was really given a chance to show how awesome he is for a long period of time, instead of being used as a tool to show how surreal and wacky something is.

And then, the coolest thing! This woman, Bree Walker, has fingers and toes that are fused together. She is (was?) a news anchor who, after wearing prosthetic hands for several years, decided to openly display her real hands. She now appears in movies and television shows playing people with her genetic condition; she also has a reality show, I think. She contacted the makers of Carnivale, pointing out that a lot of people with her condition used to be circus freaks, and telling them her ideas for a recurring character she could play on the show.

And yeah. She got it. She was on three episodes of the show playing Samson's ex-wife who joins the carnival with her new husband. The makers of the show actually thought it was legitimate for someone with a disability to be like "hey, I have this condition, and there's no one with my condition on the show, and I'm a good actor, so can I be on it?" They didn't think their vision of what the show should be like was so massively important that they couldn't listen to a disabled person's point of view, and accept her suggestion. Cool!

Dan Knauf has said that his interest in circus freaks stemmed from watching his father, a wheelchair user, be discriminated against when Knauf was growing up. Now that I've written this whole rundown of the show, I can see that there are potentially problematic elements, but I can't bring myself to be too bothered by them; I think, overall, Knauf's respect for disabled people is very obvious in the decisions he made with the show.

21 November, 2009

They hate you. Yes, you.

I always think about Danny, who was not really named Danny. It's too bad I can't use his real name because it's one of my favorite names. I'm sure he's forgotten me but I can remember his name, his face, his favorite subway train, and the words he made up.

He was a kid I met this summer at the school where I interned. I have written about him several times, sometimes at length. And although he was my favorite kid at the school, that isn't why Danny is always surfacing in my mind, tiny in his big t-shirts, flinging himself around and reciting things.

It's through Danny that I found out for sure, this stuff is about me.

Because the first thing people use on us is always, "It's not about you." When I was a kid, when I first started reading about autism rights, it was so instinctive: of course it's wrong to say "cure autism now." Of course it's wrong to say autism is a tragedy, a disease, it's wrong to give kids electric shocks, it's wrong to say you thought about killing your kid in a video about eliminating autistic people from the gene pool. Like Sinclair says it's wrong to mourn for a living person. All this stuff was plain and clear and bright, and I was autistic, and I was being attacked.

Right?

Well, not to anyone else.

Because, of course, if I told anyone I was autistic, they said I was lying, or I had a different kind of autism that made me smart and talented, so I wasn't like Those Kids, the kids who needed to be cured. And that I should think about their parents, about the money and time to care for a person like that, about the dreams that are shattered when your kid is really autistic, not smart autistic, the real kind. So in my late teens when I put myself through my paces, when I figured out my deficiencies and set myself to systematically eradicating them, one of the deficiencies I eradicated was my use of the word autistic. Because you shouldn't use words people don't understand. And you shouldn't use words that will make someone feel bad, someone who has a kid who's Really Bad, Really Disabled. Because you're not that.

And I met some autistic kids and they were not much like me, and I didn't know to apply what I knew about myself to them, because I couldn't see what they were feeling inside. But I liked them. Then I met some people with intellectual disabilities and I liked them too; after a brief nervousness because some of them looked so different from me, and made noises I didn't understand, it was easy to like them. They were people who liked things, some of them the same things I liked. I could see that they weren't on the surface very similar to me, but I liked being around them almost more because of that, because it made me feel happy and chastened to misjudge them again and again. To be proven wrong when I thought I could quantify them just because I knew more words.

So by this point, I was pretty much sold, even if I wasn't Really Autistic, on the idea that people with developmental disabilities matter. Because I was around them all the time and it was obvious they mattered. But still, I felt my position was that of an outsider, an ally. I had opinions but I didn't necessarily feel that I had much right to talk about them; I didn't feel I had as much right as the parents or teachers of people with developmental disabilities.

And then I interned at this school.

And I started out thinking: wow, ABA is so cool. I've heard negative things about it from other Not Really Autistic people, but who am I to talk about what these Really Autistic kids need? They can't even talk. They might bite themselves or something. What the hell do I know about that?

And then I met Danny and the other kids in his class. High-functioning kids. Verbal kids.

Tony, who had been nonverbal a few years before, was incredibly hardworking and sweet. When he went into the school director's office and turned out the lights as a joke, I laughed, but she said, "Tony. Look at my face. How do you think that made me feel?" She stood there looking grim until he apologized.

James was stressed out and upset; one of his teachers leaned towards him, staring fiercely into his eyes, talking with cold, strained-sounding words, the kind of voice I called "static" when I was a kid. James looked scaredly back at her, wriggling his hands around in his lap. "James," she said. "I know you're upset. But what you're doing with your hands looks silly." This boy, all the tension in him being channeled into something harmless, something she had to look under the table to see. His tension was silly. His discomfort was an inconvenience. He was eight or nine years old.

And Danny with his words. "Danny's an interesting kid," the school director told me. "He likes to be in charge." Danny and I were walking, holding hands, and when I responded with concern when he told me he was tired, another teacher told me, "He's playing you." It's true that Danny was a bossy little boy; when we played restaurant, he replied, "No, we're out of that" again and again until I ordered the food he wanted to pretend to make. And his love of subway trains spilled out everywhere. He was supposed to write a story about a sad princess, and he did, but half the story was about the princess's friends taking her on the subway to cheer her up. He was supposed to write a crossword puzzle and the clues were things like, "Transfer is available to _____ North." The school was full of subway maps, since many field trips involved subways, and Danny would sometimes just lean over a desk, pressing his face into the shapes and colors, whispering his favorite schedules to himself.

Danny just liked words. When he was using his special words, the weird words he scrounged for or made up himself, he would find himself jerkily hopping across the room, speaking in a squeaky voice, his small face tense with excitement. "Presentation" was a weird word for movie, "document" was a way to talk about the letter he had typed on the computer for his parents. "I went to the barber," he said when I commented on his newly short hair, and then, with a rush of joy, "but I like to call it the hair shop!"

I like words too. It was hard to watch Danny's teachers nudge him, sit down with him, say, "Danny, the word 'presentation' is a little weird; you need to say 'movie.'" It was hard to watch the way they looked at him, pointedly, until he stilled his hopping and lowered his voice to a more standard pitch. When Danny found out my middle name is Wood, he completely tripped out on it, hammering pretend nails into my stomach and giggling, "I'm gonna build something out of you!" "Danny," a teacher said, "don't be weird. You and Amanda were talking about names."

It was the word weird. Nothing foreign my whole life. Tracing words and shapes in the air, crossing myself, my mom asking me a lot of questions, "Have you been feeling the urge to do that lately? Why do you do that?" with so much static it was clear I'd better keep my hands as still as possible when she was around. Running jerkily up the stairs at school, I couldn't help myself until I was fifteen or sixteen, despite the older boys laughing to each other--"is she trying to race you?" Movement just consumed me that way. And being a thirteen-year-old who said "suppose" and "quite" when no other kids did. Just loving words too much, finding it hard to stay away from the strange ones. And getting too excited. Being weird is not that alien for me.

So my divisions broke down a little, because I was watching a kid just like me, and I was learning, in very specific, qualitative terms, what they thought of people like me. I was so nervous about keeping myself still and using the right words because I thought they wouldn't let me intern there if they knew I was actually like Danny, that I didn't think he was weird at all. All of Danny's teachers had been taught to grimace and say how annoying it was when he talked about trains. They watched The Office, but they never ever laughed when Danny told flat, self-referential jokes on purpose, twisting the ones he had been trained to say. I thought Danny was funny. Every time I talked to him I felt nervous about doing something that his teachers would think was wrong, and I also felt bad about perpetuating the attitude he was being taught, that none of the things he loved mattered.

So from specific to general, from Danny to James and Tony, to Max and John. John's teacher made him walk, in stiff, clean steps, and if he started doing anything that looked like skipping or jumping, she grabbed his arm, said "No," forced him again and again. Max liked to move his arm in circles while he was watching TV, so he was hauled off into an office, pushed down into a chair, had mouthwash forced into his mouth while he cried. They told me they were narrowing it down, he was moving less and less. Max and John didn't talk. James and Tony didn't talk as well as I do. But I move too much, and I move wrong, especially when I was a kid, and in that school I saw what they do to kids who move wrong.

I realized that, actually, a lot of it was about moving wrong. Or talking wrong, if you could talk. Or just taking too much initiative--wanting to make up songs, like Danny did, or playing a practical joke, like Tony did. That these kids looked and acted different and the school wanted to control them and make them as still and docile as they could possibly be. Watching them treat hopping, rocking, and neologisms like you'd treat a bomb on an airplane--it was like being at summer camp with a kid from the south, sitting in a car uncomfortably while he said he'd kill a gay person if they ever came near him. Wanting to say, no, it's not anything important; I'm like that, see? But I didn't talk in the car and I didn't talk in the school.

This is too long. It's hard to even explain it. I just have to say, for the millionth time, that this whole functioning level thing--yes, it matters in certain ways. I can buy and cook food for myself, while a severely autistic person probably can't. I can hide the way I move and talk better than other people can. But this doesn't really have much to do with politics, because when people claim that "cure autism now" and the disease and the Judge Rotenberg Center are not about me, well I beg to differ. The only reason they're not about me is that I'm old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practice it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.

So, the old-school ABA trials? With Lovaas?

This is a kid getting an electric shock:



This is why:



If you were in the wrong place at the wrong time, the wrong age, the wrong functioning level, this could be your life. This what people like them think about people like us.

20 November, 2009

Okay

so maybe it is not the country.

I had to do a presentation in my art history tutorial and I was able to more or less bullshit my way through it and exploit my general medieval and church history obsession and my very messy (but better than my classmates') understanding of Islam, and my tutorial teacher joked with me and stuff. Now I'm in a good mood. I think the problem here, though it does stem from how anonymous UK education is, is not really about the UK in itself; it's more just that I feel like I'm not really expressing myself or connecting with anyone.

Part of this is the lack of snow, and feeling embarrassed whenever I open my mouth and say everything wrong--my church history teacher pronounces controversy "con-TRA-vussy," how beautiful is that? But it's also just how the school is. People skip classes all the time and never ever seem excited about things. But they don't even seem like they hate class either, which would be something. They're just there like they work in an office.

The other day I dreamed I was home. It was pretty cool. But hopefully I will continue to talk in art history tutorials in the future, which feels like wiggling my toes, helping myself concentrate on reading by slamming my hand through the air, spelling out words with my fingers when I was a kid. Movement wakes up my brain.

Europe

Dear self, I hope I don't die, especially not on the plane home (well I like planes so I actually would mind that less than anything). This summer I would always think about what if I suddenly died. And I always thought it would be okay. Now I think, always, shit, please let me get home before I die. When I was a kid, before God, when I was really scared of dying I'd imagine that the years I'd already lived were this sort of weight keeping me alive. I've lived eight years, I remember thinking; that's something. Which doesn't really make sense. Unless you're a baby in the Middle Ages, you get more likely to die the older you get. I'm closer to it now than I was at eight, especially if I die at the age of 21 hit by one of the infernal Lothians Buses. I might just be paranoid and lonely, but I always think the people riding in the Lothians Buses are staring at me. I wonder if they can tell I don't belong.

I was not patriotic before, I know I live in a country of ugly money and too much sun, but please God deliver me and drop me back into the mass of it, America, dirty and self-centered and out of control and utterly divorced from any past. I can't stand walking down streets that have been here forever.

19 November, 2009

More Mad Men (do I ever stop?)

I'm having a boring argument on Television Without Pity about how Trudy is "enabling" Pete or whatever. I didn't even know how to properly argue about this because enabling is this word with a bunch of connotations that don't actually have to do with the definition so you can't just look it up in the dictionary and argue against that. Because enabling technically means making someone more capable and prepared for things, which is what Trudy is doing. But the way this person means it, I think, is that Trudy is shielding Pete from the consequences of his actions, and (in the poster's words) treating Pete like he's her child.

Okay, number one, who cares if she's treating him like her child? They both seem to like it. They both seem to be doing a lot better than they were in seasons one and two. What's the problem? It's weird? You wouldn't like it? Well, awesome, nobody's forcing you to have that kind of relationship.

Number two, this person seems to have this attitude that help is something you should get because you're a good person and you deserve it, not because you need help. I said, "Pete clearly has some kind of social impairment and has a lot of trouble controlling his emotions, I'm glad Trudy is helping him because he seems to be doing a lot better." The person said, oh, so Pete needs Trudy to keep him from committing rape and adultery?

Well...apparently. I guess I would argue that a combination of ASD and growing up with lots of privilege but no love (actually someone said it really well the other day--Pete was raised to believe that he's entitled to everything, but doesn't deserve anything) have created a person who has a very hard time relating to people, caring about them, understanding cause and effect/delayed gratification, and containing the pretty massive amount of rage that arises from his feeling that he has no control over his life. So, yeah, it's not that unbelievable to me that Pete needs Trudy--a person who genuinely cares about him and understands him, and has very good social skills and can explain to him what's going wrong--to keep from doing things that are fucked up.

Hopefully this won't always be the case. He seems to me to be growing up. He didn't yell at Pryce in 3x12 for example. He is displaying actual affection and loyalty and stuff to Trudy, which makes me flail my hands around with excitement. PETE IS BEING A PERSON!! YAY!!

But, according to this TWoP individual, Pete doesn't deserve to get the help he obviously needs in becoming a person, because he isn't a person now. Okay, cool, he doesn't deserve it, but can't we just be happy for him and the people around him? Trudy wouldn't be wrong to tell Pete he's a shit and she wants nothing to do with him, but everyone else already tried that and it didn't work. Not helping people who need help may be fair in an Ayn Rand sort of way, but I can't bring myself to criticize Trudy for being willing to help Pete grow up.

About being antagonistic and harsh and us vs. them

Because I was reading a conversation on a LiveJournal community for PWDs where people were talking about how non-disabled people don't mean to oppress disabled people, and disabled people shouldn't be so bitter and think of non-disabled people as the enemy, etc. etc. I also had a conversation with a non-ASD guy on one of my YouTube videos where he responded to my points about non-ASD people making a big deal of ASD people's needs by saying that I was overapplying my own experience, and most people are usually happy to help if you tell them there's a problem, etc. etc. And that I shouldn't group people and stereotype them and make statements about "what non-ASD people do."

So, okay, here we go: I'm a Christian. I love everybody. I'm also an apologist, not just in terms of Christianity but in general. If someone says something that I think is offensive, I will never, ever yell at them or be rude; I will try to engage with them and explain why I feel the way I do with examples and arguments that are neutral. In real life, sometimes I get overexcited because I like explaining so much, and it comes off like I'm angry because I'm talking more loudly than I usually do, but I'm not really angry. And on the Internet, I've had a few really cool experiences where people told me that I actually changed the way they thought about something and they appreciated that I took the time and energy to explain what I thought.

Also, probably because of my ASD, I do not spend a ton of time talking contemptuously about the way other people speak and what they speak about, or the way they dress, or whatever. Okay, this is probably a lie, but I don't want it to be. I guess that I am actually pretty harsh (inside my head and behind their backs) on people who seem to have a really easy time in areas where I don't have an easy time. On the other hand, I get along better with people who are considered "obnoxious," or have unpopular political opinions, than almost anyone I know.

And, finally, I think I have written before about how the idea of being myself or doing what feels right is completely foreign to me and I have no idea what the fuck it means. If I was able to figure out how to be myself, and was stupid enough to do it, I think I would screw up class discussions, possibly get arrested for suspicious behavior and/or violence, and definitely have people yelling at me out the windows of their cars every time I went outside. And some other stuff. I don't think about being myself very much. I think about how to be standard, or at least standard deviation. I think about how to get by, about how to fit myself into the structure of the world. And if someone doesn't know this about me, it's because I don't feel the need to tell everyone about it all the time, but that doesn't mean it's not true.

The oppression of people with disabilities is something I am very interested in and examples of it are very apparent to me, all the time. So I think about it, and write and talk about it when I get the opportunity. I don't think it is okay to do and say things that are ableist, and when I have a chance, I point them out.

But this doesn't mean anything about who I am as a person. For example, I recently had a conversation with a guy who was saying that intellectually disabled people depress him because they can't do anything worthwhile with their lives. I didn't yell at the guy or even feel internally that I hated him for saying something like that, because I didn't hate him at all. I liked him well enough. I like almost everyone well enough. At the same time, I thought that what he'd said was extremely offensive, and I did some writing and thinking about it later.

I am a reasonably nice person and I don't think that non-disabled people and/or ableist people are The Enemy and I don't spend my time walking around consumed by rage, and this is not at all inconsistent with the fact that I am very conscious of ableism and want to fight it. I'm mad at structures and ideas, not people.

18 November, 2009

Rewatching the Regular Pete Campbell Show

"She kept looking at the maps and talking about all the places we were going to go...but we never did."--Pete's story about sex

AMAZING.

(Pete calls Don "buddy" and tries to shake hands with him.)
Don: Slow down, I don't want to wake up pregnant.
Pete: fuck you.

AND THE FINEST SCENE EVER:

(Peggy looks around awkwardly as Pete comes over to her in his giant neon suit and then smiles at him for a really long period of time.)
Pete: I'm back.
Peggy: I see that.
Pete: So...I should be on the list for the meeting.
Peggy: Oh! I just...didn't know when you were coming back.
Pete: Right... (in a weird jolly voice) Yeah, well, it's today, here I am! (creepy fake laugh)
Peggy: They're all in there already. You can go in.
(Pete shuffles around awkwardly and Peggy looks up at him with a repressed amused/happy expression on her face. I think. That's how I would feel, at least.)
Pete: Peggy--when I came over, that night, you know, before...
Peggy: I was there. (Awesome! I love that Peggy is only funny with Pete. This has actually more or less continued to be true, except she's funny with her mom and sister sometimes. The rest of the time she's an AWKWARD TURTLE.)
Pete: You know...I'm married now.
Peggy: I know.
Pete: So...
(AAAAWKWARD. Pete stands there looking like an 8-year-old. Peggy looks at him for a while.)
Peggy: (very slowly) Pete. I understand. It never happened.

People act like when Peggy had a crush on Pete she didn't understand what a loser he is but I absolutely don't think that's true, I think she has always found him unintentionally hilarious and she used to be in a position where she could afford to appreciate that, but she isn't anymore because she had to grow up and he didn't.

(Then Pete goes into the meeting and makes a joke and when everyone laughs, he looks like super awkwardly pleased with himself and rolls his little shoulders around. I love this show.)

Final Thoughts on Video Game Pete Campbell

So, I finished the Video Game Pete Campbell Show the other morning. Because I watched it all out of order, the last episode I watched was the season three finale which led me to ponder the question, didn't Connor smell like Holtz after hugging him and decapitating him and stuff, and if Angel is always able to snarkily announce that people are having sex with each other, shouldn't he have been able to realize that Connor was lying when he said he hadn't seen Holtz. WHATEVER ANGEL YOU ARE TIRESOME.

All-in-all, I enjoyed VGPCS. Angel was obviously beginning to fall into the slump that Joss Whedon lets everything fall into when he gets distracted by something else, but it's not like later seasons of Buffy or anything like that. It's certainly enjoyable to watch.

On Basket of Kisses, the very best Mad Men website, they once had a post that was like "how can Vincent Kartheiser have been so incredibly terrible as Connor/Video Game Pete Campbell, and yet be so delightful as Regular Pete Campbell?" Okay. I take issue with this. I enjoy VGPC but he has to be the most repetitive, underdeveloped character in the history of the world. I think VK at least makes him interesting to watch. On Basket of Kisses, someone was like "I didn't think Connor acted like he was in pain." Well, what would that even mean? I'm sure he wasn't raised to go around crying all the time. The way VK moves and talks on Angel is so odd and that alone gets across the pain for me; like, the way he reacts when people touch him, and just his general quality of not really being there in the same way as everyone else.

I sort of think VGPC should have surprised everyone with his goodness at the end of season four, which has nothing to do with me being attached to him. In fact, when I watched the Jasmine episodes (remember I was watching the show out of order), I was like "oh, this is so cool, everyone thought that Angel's crazy son was okay now, but he's actually still pretty unbalanced in a way that no one suspected, and now he's all of the sudden their enemy because he thinks that Gina Torres eating people is a good time. Oh wow, Angel's going to have to kill him because he's crazy, this is so sad."

But then when I went back and watched more season four episodes, I was like wait, this is what his character was like for the whole season. He was just like "I'M CRAZY AND I'LL DO ANYTHING FOR ATTENTION." It got to the point that when Cordelia would be like "Of course I love you and think you're special, now go kill a baby" I would just start laughing because it was like "Oh Connor, there you go again." Like, when Connor totally goes along with all her evil plans, are you supposed to be surprised, because I can't imagine being surprised the way he's characterized the whole season. I just think it's unfortunate. I was so excited to watch the Video Game Pete Campbell show, but it turned out to be one episode repeated 26 times.

17 November, 2009

I am having trouble with things. I get so tired. I have so many assignments that I know I'm not really expected to do all of them, but I don't know which ones I'm actually supposed to do. And I walk so much. I can't wait to be home.

The only nice thing is I have found divinity. I was telling my friend, at home when I look at trees and sidewalks and the sky, it all sort of shoots into me sometimes and makes me tremble. For a long time, here, that didn't happen. The buildings just looked like someone's idea of a building. But in the past few weeks, walking home from my art history class through an endless maze of dark parking lots, coming to the top of a flight of stairs crammed in the middle of the city and seeing the sky all crystalline rising in the middle of the walls. Back alleys. Flowers. The sky at night is purple with blue sneaking up behind it. I don't mind looking at things anymore, and that matters more than school being hard, or having friends.

14 November, 2009

fictional characters

who strike me as having ASD and/or who I identify with as an ASD person without actually thinking that they have an ASD.

1. MAD MEN of course has Pete and Peggy, who pass in different ways, who compensate in different ways, who "improve" in different ways and are attracted and repulsed by each other for precisely that reason.

2. HARRY POTTER--Luna in a conventional way (i.e. she strikes me as actually having ASD). She was the first person I was exposed to that dumb conversation about, because Luna said something nice to Harry one time and real ASD people don't ever say anything nice or helpful, according to the people in that conversation. Also, Luna dresses weirdly because she likes to, while real ASD people dress weirdly because they don't know any better. Tiresome, because she's actually perfect as a realistic example of an ASD person, and I wish more intentionally ASD characters were like her.

I don't really think Neville has ASD, but he is my favorite character and it's easy to identify with the way life is a battle for him while he's in school. There's a really good fic, Night-blooming Heartsease, which really powerfully articulates the kind of determination I had to develop as a teenager--and yeah okay, it's slash, and has a pairing that squicks a lot of people out, but seriously, just read it anyway, you won't even care it's that good.

3. ARRESTED DEVELOPMENT--Buster of course! His impairments are probably caused by his upbringing and not something neurological, but I've always found him easy to relate to. For a while it was easiest to just explain myself by saying, "I'm young for my age." Although I don't have all the trouble with things like taking buses that I used to have (not as much, anyway), I used to just tell people, "Yeah, so I'm basically the real-life Buster Bluth." It made things a lot easier. I think that Tony Hale makes some acting choices, in terms of mannerisms, that make Buster read as someone with a developmental disability, but I don't know if this was a conscious decision.

4. FIREFLY--River Tam, especially in "Objects in Space." Again I don't think she is really ASD, but I love the message of that episode, which to me is about how the crew try to judge River's sanity and morality based on the things she does that they read as "crazy" or "odd," like picking up the gun, or having (in Kaylee's eyes) the wrong kind of affect after shooting people. She doesn't see context, she just sees objects in space. Then we have Jubal Early who also doesn't see context but is completely different--River sees guns as pretty objects, and Early sees "ordinary" objects as weapons, he sees the cheerfully, guilelessly sexual Kaylee as someone he can cow with the threat of rape. So I think the story is supposed to be, context-blindness and being evil or unstable are not the same thing. River is odd and good.

5. SPACED--Brian! I really love him because usually when you are diagnosing fictional characters, you have to go on social interaction alone, but Brian actually has the mannerisms and postures of an ASD person. Well, this ASD person, anyway. And like Luna and River and Buster, he is a good person, just different, which is nice to see.

I'm sure I'm forgetting someone. A lot of people, actually. But whatever.

Privilege + ASD

This is something I said to someone in the comments of my Mad Men Asperger's post on livejournal, about Fuck Pete Campbell and its ilk:

I don't know, I mean I'm white so I feel like it's not really my place to say how people who aren't white should feel; I don't know if I would enjoy watching the show if I wasn't white. And I think that having a lot of privilege and being really unhappy about it is sometimes hard to sympathize with if you don't have privilege. For example, as a gay person I tend to get pretty bored when straight people complain about how hard it is being straight.

Also (I think I wrote about this a bit in the original post, or intended to) it's interesting to think about how different Asperger's looks in different people. For example with women you can't really tell. It seems pretty likely to me that this is because society comes down harder on women who have bad social skills. And it's probably the same with people of color. I mean, Pete's life is crappy now, but if he was a black guy in the 60s with the kind of social skills and temper he has, his family would probably be scared that something would happen to him; like, something violent. (I also think that they'd have more of a sense of him having a disability, even if they didn't call it that. I wonder if he would be sort of a family responsibility, like "shit, who's going to take care of Pete now that so-and-so died.") The way I'm writing this essay comes off as a little anti-Peggy, but of course it's totally not her fault. Peggy would have been fired if she acted like Pete. Peggy sure doesn't have the option of muddling around until she meets a nice guy who will devote all his energy to managing her social impairments.

When Pete feels powerless he kicks around women. When Peggy feels powerless--well, she better find another outlet, because she doesn't have anyone to kick around.

I hope it doesn't come off like I'm saying this all in response to what you said, and trying to correct your reaction or something--I just started thinking about it while I was typing. To be honest I do feel personally hurt when I see all this "fuck Pete Campbell" stuff, or just sort of this attitude that guys who pretty clearly have some kind of social impairment are just The Oppressors, and there can't be any more to them than that. I remember seeing this a few years ago in a post about RealDolls. The guy the article was about clearly suffered from a lot of social anxiety that made it hard for him to handle relationships (or even find them), but everyone on this blog was just like "oh, he hates women, he thinks women are untrustworthy." I love Pete, very much, probably more than someone should love a fictional character. I don't want to ignore his privilege but I don't think it's fair to ignore the fact that he has lower status as a disabled person, whether or not other characters consciously perceive him that way.

13 November, 2009

I bought the most terrible guitar ever

It cost £15 and is impossible to tune because the strings sound so weird and twangy. I have a terrible ear, but I'm a bit synesthesic so I can do a passable job tuning if I just try to make the notes look like each other in my head. It is really hard on this guitar because the notes never look the same because each string has something uniquely awful about the way it sounds.



Anyway, I've been in such a good mood about getting to actually play that I've just been doing stimmy running/jumping around in between playing (even though playing is a kind of stimming so can't I give it a rest?). It's ten o'clock and I've already completely exhausted myself, which is good I guess. I'll watch some VGPC, write a bit, and go to bed early enough to get up and do lots of homework tomorrow.

Lucid stimming

I was taking a nap. I dreamed that I got a package (not surprising, as I just had my birthday). It came through a window like the way you send packages at the post office. I realized I was having a dream because that's not how I get packages here or at Oberlin. I took my package and went home. My home was upstairs in a place that looked like a motel. I was curious to see what my room looked like. I started stimmily running up the stairs and I wondered, because stimmy running in real life makes it hard for me to fall asleep, whether stimmy running in my dream would make me wake up.

Then my neighbor started practicing the saxaphone. My neighbor is very sweet and usually I think her saxaphone playing is comforting and helps me concentrate, but she seriously couldn't have started practicing at a worse time. I was just about to make an important discovery! Now I'll never know if it's okay to do stimmy running in my dreams or not.

12 November, 2009

Julie

This is actually my least favorite Devon Sproule song, by far--it seems much more formulaic than the other ones I've heard, which are fantastic--but the bridge is sort of out of this world.



Some women are patient, some are too pretty to be
but woe is the beau with neither, there
ain't a fellow alive with a pillow so wide
just waiting for my beautiful love,
my restless lady,
the only girl I think of, think of

Okay Glee, you have redeemed yourself a little

This morning's episode of Glee was some parts good, one part terrible, and one part better than I would ever have expected.

First off, I want to explain what my problem with the show was in the first place. It definitely wasn't any one line or event. It was just that certain characters were not written morally. And when I talk about writing morally, I don't mean the characters need to be nice; I mean the writer needs to think about the characters the way people should think about other people in real life. Realizing that everyone is complicated, everyone has reasons for what they do, no one thinks of themselves as a villain or comic relief. The thing about writing morally is that it's the same thing as writing well. So for me, when Glee is offensive and when it's a low-quality show, it's both of those things at the same time.

The opposite goes for Mad Men. It's a really high-quality show and it also never offends me. Characters do offensive things, but I never get the impression that this reflects the writers' ignorance. And more importantly, characters who in lesser shows might be reduced to villains or comic relief, or something else less than human, are treated with respect. While we might sometimes see them as funny or villainous, we also see that they take themselves seriously and are doing what they think they have to do.

Anyway. Aspects of Glee from worst to best:

1. Sue Sylvester lets a girl with Down's Syndrome on the Cheerios and is mean to her. Will thinks Sue is being mean, but Sue says she's treating the girl like everyone else. Will wonders why Sue would do something so un-Sue-ish. Then we find out that Sue has a sister with Down's Syndrome who she's very close with.

This was a pretty good example of how the people who write Glee decide to take on issues that they have absolutely no knowledge of and aren't interested in learning about. The characters with Down's Syndrome behave like four-year-olds; Becky, the teenager, walks around holding hands with her friend and is manipulated into buying a cupcake. (Why couldn't Becky just decide to buy a cupcake because it's a nice thing to do?) Sue's sister, a middle-aged woman, enjoys having Sue read Little Red Riding Hood to her. Also, she apparently spends all her time in bed at a place that I think is a hospital, and this is portrayed as normal. If Sue's sister has a significant disability, which I guess she does, I would expect her to live in a group home with other disabled people--not just lie in bed waiting for her sister.

Becky is a perfect example of a character being used as a device instead of being human. Becky has almost no lines and we know nothing about her except that she wants to be a cheerleader. Also, the actress who plays her is terrible (at least I'm pretty sure she is; she has so little to do that it's hard to figure out what she should be doing). There's also the fact that she is in no way qualified to be a cheerleader. Why couldn't Becky have been a good, or even decent, cheerleader? Why did she have to be so clumsy that Sue's letting her on the squad must be interpreted as an act of pity?

I was actually excited when I found out that someone with Down's Syndrome was going to be on the show, but this ended up being by far the worst aspect of the episode.

2. Rachel is told she will get to sing "Defying Gravity," but Kurt wants to sing it instead. He complains to his dad, who is very macho and doesn't understand Kurt's interests, but is supportive of him nonetheless. His dad threatens the school, saying it's homophobic and sexist to not give Kurt a chance to sing the song. So Kurt and Rachel each get to perform the song, and the glee club will vote on who sings it better. Kurt can sing just as high as Rachel, but at the last minute he intentionally screws up, because someone called his dad and said "your son's a fag." Kurt explains to his dad that he is used to homophobia, but his dad isn't, and he doesn't want to be so visibly gay that his dad will have to experience harassment.

This was really good; I like Kurt. He's very stereotypical, but it doesn't bother me because he is human. I feel the same way about Tara from True Blood (maybe I'll post about her another time). I liked that we saw how being gay affects Kurt, and how even though he's really feminine, he can actually be stronger than a masculine guy like his dad.

3. ARTIE!!! This was fantastic. Will says they should have a bake sale to afford an accessible bus, but all the other people in glee club say that Artie doesn't mind being driven to things by his dad. In fact, Artie does mind, but doesn't want to make a fuss. Will sees how hurt Artie feels, and inexplicably has enough money to buy wheelchairs for the whole glee club which he makes them use for three hours every day. He also makes them dance in the wheelchairs. When the other kids have to deal with how inaccessible the school is, how people don't look at them, and how hard it is to dance in a wheelchair, they respect Artie more and work hard on the bake sale. When they end up raising the money, Artie says they should use it to make the school accessible instead, because that will help future disabled students, instead of just helping him.

Also, Artie and Tina obviously have a crush on each other, and two or three times during the episode, Tina tells Artie how much she admires him. Each time, Artie replies, "Oh, well, you have a stutter, so you understand having to overcome something." The last time this happens (after they've just kissed for the first time), Tina tells Artie that she doesn't really have a stutter, and has just been faking it for years because she's shy and it makes people leave her alone. She says that now she's become more confident and wants to stop pretending to stutter. Artie gets really mad at her for faking, and says something like, "You get to be normal now but I'm stuck in this chair for the rest of my life."

I loved, loved, loved this. Artie has never been developed at all, but now that they've finally developed him, they did a really good job. He's very kind and mature for his age, but also justifiably angry about the way people treat him. I think it's common sometimes for people who are minorities to go with the flow and appear unruffled by things, but actually be really angry on another level that they don't show to most people because it's not practical. This is probably especially the case for people who have disabilities that require support; we don't want to offend anyone in case we end up having to ask that person for help. Artie saw Tina as being on another level from other people, someone who could understand, and I think it's because of that that he feels so betrayed and expresses really negative emotions about being in a wheelchair, which I'm not sure he would express to most other people.

Maybe some people would find Artie's negativity offensive, but I didn't. I was actually pleasantly surprised by how social-model the show was about the whole thing. When I heard that the episode would involve the kids using wheelchairs to "see what it's like for Artie," I thought it would be all about how soul-crushingly miserable it is not to be able to walk, but really, we were shown a montage of the kids getting hit in the face by people who didn't see them, having to deal with things that were too high up to reach, etc. And when Artie expressed bitterness at the end, it seemed to be more about looking weird and being cut off from other people.

I just really love Kevin McHale. Even though I think a disabled actor should have been cast, he is really adorable, talented, and great. The best scene in the episode was when Tina kissed him and he put his face in his hands like he was too happy to look her in the eye. He was on True Blood by the way! He was the coroner's assistant who gets blown up.