28 February, 2010

To people who have trouble going to religious services

Something to remember: God doesn't think you're normal, ever.

I missed church because I spilled a bottle of soda on my desk so I decided to go to student mass. I don't have much experience pretending to be Catholic and throughout the day it was an unpleasant prospect. I decided not to go a million times. As I was walking there, I decided to call Clayton and talk to him instead, but he wasn't there, so I decided to call Noah and hang out with him. Noah is always there but this time he wasn't. By the time Noah was done not being there, I had arrived at the chapel, and I just went in.

It is really hard for me to go to church since I wasn't raised going to church and I never know what to do and also have to worry about stuff like people maybe talking to me. But I just tried really hard to remember that Passing is Not Ethics. Basically, fucking up in church because I wasn't raised going to church, or because I'm a freak in general--I mean, God knows.

I forgot to genuflect when I went into my pew and it was like, okay, no one's watching me, and even if someone was, God knows why I forgot. I really liked going to mass. I just faked knowing what to say and stuff. I just sort of moved my lips. And I just have to remember that God knows why I do things wrong or right.

This isn't totally related, but I found it a few months ago and it makes me really happy: Suggestions (with many examples) about how to help ASD kids go to religious services.

26 February, 2010

And We Could Go in the Ocean

(This is for a class, and as I mentioned when you write personal essays you're supposed to make yourself sound as unpleasant as possible--so keep in mind I don't actually stare at girls in the shower in real life, I sort of put that in to make myself seem creepier. However, now that I turned it in, I can't believe I said that, and I feel like it kind of ruins the story because it's like, "why should I care about this CREEP?")


When I went to farm camp there was a girl, Abby, who I now think was schizophrenic. I mean, in psychology classes, I can’t help but think of her. When I was younger I didn’t think of these things in much complexity. I thought of her as “retarded,” I think. But I’d never met any kids who were actually retarded. I meant she had a sense of being guileless. And that I liked talking to her because it was like going somewhere else.

Our camp was a camp for kids with problems. Except for some kids who were going to Yale. In retrospect it sounds kind of messed up, like they were slumming, us and them—but it didn’t feel that way. You could maybe briefly pretend you were another kind of kid. How did the Group know if your parents had sent you here because they couldn’t control you, or if you were just interested in planting vegetables and living without light?

Except, Abby was apparent. In Group, the counselors would weirdly spur us to new heights of backbiting. For example one time we were told—all fifty of us—to go around and say something we thought was wrong with the way people acted at camp. We would work ourselves up into a fervor even if we didn’t want to. If we tried to say, “Um, people are cliquey?” we were told to say exactly who we meant. “Paca and Jake always sit together and I feel like it wouldn’t be allowed to sit with them,” we would finally get out, slowly, gnawing at the hems of our jeans with our hands. Then Paca would cry while Jake glared at us, trying to open his eyes wide as possible to look sincere. I mean, no one was supposed to be mad. But Abby became distraught, and when it was her turn she said, “We’re broken, we’re all shattered apart, in pieces. There’s been a schism, we’re everywhere. I’m very worried about the schism, I don’t know how we’ll find ourselves. We have to get back together.”

One time I was sent to get Abby because she didn’t show up in the morning to plant vegetables. Abby was in the creepy bathroom that caused me for the only time in my life to stop wearing makeup. She was taking a shower, her pink towel draped over the bar. I reminded her about crew but she said, “I’m taking a shower. I’m cleaning myself. I’m not done.”

Abby wasn’t concerned about the shower curtain and I could see her inside. I’d never seen a girl in the shower before. Abby’s body was skinny and calm and she looked different without her glasses. Later, digging holes for beets, we looked up and saw her coming slantily along the road, with the dawn breaking briefly, the trees starting to beam with yellow light.


I was the favorite girl of Becky, a tiny thirteen-year-old who had depression and anorexia and smoked cigarettes. There were two kids with Asperger’s Syndrome, Noah and me. I loved Noah because it’s always easier to forgive your faults in someone else and even find them charming. I defended Noah constantly to my friend Chase, who had a wide white face and dark hair, was openly against Group and wore Salad Fingers shirts. “He’s fifteen,” I remember Chase saying about Noah, “fifteen!” and I started crying and Chase apologized for making me cry. I think Chase was talking about how Noah should have the sense that other fifteen-year-olds, like Chase, had. I think Chase, in specific, was talking about Noah’s horrible unintentional love affair with the twelve-year-old Sara, who was tone-deaf with a face like a distracted frog. Sara just said they were in love and Noah didn’t say anything, just frowned or smiled to himself. It was hard to tell.

I miss Noah because he was like me, he blundered into problems and then spent time apologizing, over and over, for everything he might have done. Noah was so small he looked younger than Sara, which made it a little less creepy in my mind. I was seventeen but at farm camp I took advantage of whatever it was that made Noah and me pass for younger; I hung out with Sara for a while, letting people take me for a smart and mature fourteen-year-old instead of a hopelessly droopy and spacey almost-adult.

Noah’s face looked nearly deformed in its tenderness, his eyes like marbles behind round wire glasses, his tiny, pointy nose. Noah was just all-around tiny and pointy, certain counselors took a liking to him and would just hold him during Group, his small shoulders burrowed into Dave’s sweatered side, Dave’s hand on Noah’s arm. Noah was like a leech or a suction cup maybe. He was easy to love.

Maybe I also was and didn’t know it. It’s the apologizing maybe that shocks affection out of people when they least expect it. This girl who wanted to be a missionary was hugging me on the last day of camp, crying inconsolably and staring into my eyes, telling me not to be so hard on myself. My cabin told me I was brave.


So maybe it was stupid for me to imagine I passed. Everyone probably knew I was a Noah, an Abby. Although when I first met Noah, I didn’t know he was a Noah. We fed the pigs together one morning and talked about aliens, stuck our heads into the pen.


Once Jesse, the gay counselor, said in Group that he had something to say to me. Then in the art and music cabin, in the rain, he told me he was afraid to apply for a job at Banana Republic. He said he didn’t think he was good enough for anything, that it was hard to even look at people. Jesse had a clear voice and a deferential manner. Sara had a crush on him; she was loudly homophobic but very na├»ve. I had a crush on him too, kind of. I always used to get crushes on gay men and not understand it, but I guess it’s just like the way I love Noah, the surprise of seeing your problems in someone else’s mind.

Jesse said I was pretty and shouldn’t always go around saying I was fat. He started to tear up. I told him about my dogs and he recognized they were named after characters from Buffy the Vampire Slayer. We complained that people no longer watched it or knew what it was.

One day before Group started, Jesse complimented me because I was always writing down what was happening on my arms and legs. My parents were upset about me doing this, they sometimes cried and said people would know that I cut myself because I didn’t care about the state of my skin. Jesse explained how he was going to be a singer and he could tell because he sang all the time, everywhere, and I was the same.


I wanted to tell Jesse I was gay but I didn’t. Eventually I told my cabin and they said I was brave. Becky was excited and struck up the same kind of relationship Sara stuck up with Noah, but with less implied consent this time around. For a long time I thought farm camp was important because it was the first time people didn’t know I was gay, I could control it, because I could be a good person if people just didn’t know. I was sure a lot meaner to Becky after she found out.

However, my feelings about farm camp are now more diffuse. Sort of like when my dog Xander is curled into me during a thunderstorm, I wake up and there is this fleecey substance pressed into me, a wide, round heart beating hard against my own—and it’s like, why would you come to me? Don’t you know any better than to trust me like this?

25 February, 2010

This woman is a delight; and, On Speaking Badly.

Andrea Fay Friedman, the woman in this video, portrayed a character on Family Guy who has Down Syndrome and, when asked what her parents do, says, "My mother is the former governor of Alaska." Palin had a shitfit of course, and then Friedman did some interviews saying that she thinks it's funny and Palin should get a sense of humor. In this video she becomes visibly upset about the fact that Palin is using Trig's disability to get attention. Friedman emphasizes that her parents gave her a normal childhood and that's what Trig should be able to have too.



(Transcript by Tlonista here at FWD/Forward.)

Some person commented and said that Friedman obviously didn't understand the situation because she said Palin was trying to use Trig to get "votes." Argh, why does it matter whether she used exactly the right word for what she was trying to say?

I remember that I used to have this reaction to videos of intellectually disabled people talking with other people, where if they didn't talk that much, or spoke in a cliched or prepared-sounding way, I would think that maybe they weren't expressing their own opinions. Specifically, I'm talking about videos where the star of "Retarded Policeman" would appear with a non-disabled friend or family member, and express that he was okay with being in the show, and that people shouldn't get offended on his behalf. (There was also a video saying that he was okay with the word "retard" in Tropic Thunder.) This is the first video, where he appears with his sister:



Ponce: Hello, world. Josh "The Ponceman" Perry here, with my sister Stacey.
Stacey: Hi, guys. We've been reading a lot of your comments and wanted to clear a few things up about Josh. Josh is an actor.
Ponce: And I am hilarious!
Stacey: He is hilarious. And he loves acting.
Ponce: And I want to do this for a living.
Stacey: So just sit back...
Ponce: And enjoy it.
Stacey: And to all you people who have a problem with Josh acting, or even if you find it offensive in any way...
Ponce: I just want to say, I have Down Syndrome, but you people are fucking retarded.
Stacey: As the Retarded Policeman would say...
Ponce and Stacey: (in Retarded Policeman voice) Bye!


Ponce and his brother Scott (who writes and acts in short films with Ponce, and also wrote some of the Retarded Policeman videos) ended up refusing to make any more Retarded Policeman videos because they said that Ponce wasn't being paid enough given how successful the videos were, and made a video about that.



Josh: Hey people.
Scott: Hey guys. The reason Ponce and I are doing this video is because, over the past year, we've had a ton of our friends and fans ask us why we're not doing Retarded Policeman anymore, and why there's no new episodes.
Josh: I love the show and I liked doing it.
Scott: Yeah, in all sincerity, we absolutely loved doing Retarded Policeman. It's one of our favorite things. However, the simple answer as to why we're not doing it anymore is that we had an agreement with Mediocre Films that has not been honored. That's really all I want to say about it. Um, we, um, we put a blog up about that if you guys want to check that out, it's http://theperryboys.wordpress.com, we'll put the link here, and put the link in the side there. But believe me when I say that we have tried everything that we could for this past year--basically, all year, trying to work something out and make things okay so that we could continue, but we've sadly reached an impasse--like, we know we're not gonna work things out. Uh...that's it--anything else?
Josh: I just want to say, from the bottom of my heart, I loved doing Retarded Policeman, and I love all your comments, and I just want to say, from the bottom of my heart, it breaks my heart.
Scott: Okay. Just leave us comments, you know--we love your comments here, we love your comments there. That's it, we're gonna move on, we're gonna do bigger better things, we're gonna keep doing what we do, and that's it, right? Out and out.
Josh: (in Retarded Policeman voice) Bye!
Scott: (snickers) Nice.


When I first watched these videos I felt uncertain. If Ponce was really expressing himself, then why did the things he say either sound scripted, or sort of unfocused; and why did he generally not take the lead in expressing points? Then I realized how dumb my reaction was. If I was making a video like this, I would want someone else to express the big points. I'm not such a good talker myself, and it sucks when people think that (because I say "like" a lot or lose my train of thought or have to prepare what I'm going to say) I'm not sincere. Sometimes I even start thinking that I don't know what I'm talking about, just because I can't produce an immediate response when someone says something. So I couldn't believe that I would judge whether someone else was expressing their own thoughts, just based on whether they talked "well."

Andrea Fay Friedman is obviously emotionally affected by the idea that Trig isn't being allowed to have a normal life. As a person whose parents were told to put her in an institution when she was born, Friedman doubtless has a clear idea of the prejudice that people with Down Syndrome face, and the pity and admiration points a person can rack up just for having a kid with Down Syndrome. So why the fuck isn't Friedman allowed to say that she thinks Palin is exploiting that, and that Trig deserves to have parents as good as Friedman's? Who cares if she uses the word "votes?"

(In the event that Ponce/Josh Perry is one of those people who Googles himself all the time, and finds this: Dear Ponce, I hope that you don't think I'm insulting or criticizing the way you talk. Just trying to explain how stupid it is to judge people by the way they talk. I really like the videos you and Scott do, especially the Paranormal Activity one.)

24 February, 2010

the blog schism

so I always feel bad when I post about my dumb attempts to give myself a haircut or something, and/or evidence of Vincent Kartheiser possibly being a baby llama pretending to be a person--however, I never want to post anything on my 5-year-old livejournal, because there's way too much boring/annoying stuff on it, and even though the haircut stuff is not exactly important, I think it's too entertaining to be on the Awful Livejournal, so it has a new home:

[deleted 8/9/10, not doing that tumblr anymore]

in other news, my weird shutdown that started Monday is sort of coming and going. Is that even possible? My head just always seems to be hurting and sometimes I take such a long time to understand anything and can't think anything through. There have been some moments of not-shutdown, though.

I'm going to go to Student Counseling. I just feel stupid because I'm presumably traumatized from going to another country where I didn't talk to anyone? I just feel embarrassed because some people have real problems. But when I really think about it, as long as all the appropriate sensory factors are in place, I haven't really had sleep problems for several years. And now I wake up in the middle of the night on a regular basis, often feeling really freaked out.

Sorry this is navel-gazing. I actually am going to try to be pious/academic and not post on here. And when I do, thanks to the tumblr sublimation, it's always going to be these really serious and in-depth disability-related posts! It's going to be amazing!

23 February, 2010

reasons to have bangs/reading

I've never liked having eyebrows and today I decided to stop having them. There are kids at Oberlin who draw lines on their faces or grow half a beard, and I figure I won't be here forever. Maybe I won't even be able to have green hair when I'm older (that would be a tragedy but I'm slo-o-o-owly trying to adjust myself to the idea that maybe super-blond would look okay; red is definitely a trial and there's no way I'd ever go back to not dyeing it at all).

(I deleted the pictures because I think they're creepy.)

I'm also trying to give up makeup for Lent (to some extent). Although I just realized that drawing on eyebrows is going to take WAY more time. Argh.

Speaking of people who don't have eyebrows, I was thinking of writing about reading people. I mean, trying to figure out if people are Like Me (which means, I guess, ASD people, intellectually disabled people, and some people with mental illnesses, or people who are just sort of on the border of having something, but actually don't--well, if you know what I mean, you know what I mean, and if you don't, you don't). This is an activity that can be comforting and a lot of fun.

In Edinburgh there was this girl in my building who was also from America--an international student, a first year. I only talked to her a few times, but if you asked her a question, she would answer it and then say, "You?" I guess this is another thing that you either know what I mean or don't, but I wish I had tried to be friends with her. I wish I could have said, I know you plan out what you say before you say it, but you don't have to do that with me.

There is a way of being serious and concerned and planning things out, and if you pass to normal people, they fucking ride you about it. Don't be so serious! Don't get so upset! Why do you have to know exactly what's going to happen? Just be yourself! Just do whatever you feel like doing! Whatever I'm concentrating on is never as hard as hiding my look of concentration to calm the norms. Planning out what to say is not so bad, is even fun, but delivering it so it doesn't sound like a script is just--they frequently catch you, and if it's something that's supposed to be spontaneous, well--

What I'm trying to say is that even though I think Evelyn Evelyn is kind of a stupid idea, I wasn't that upset about it. I mean, I completely respected that other people were and admired them for saying so. However, then I saw this video (start at 2:20--however, a really good example is 4:10):



This video makes me feel upset because Amanda Palmer is using body language that isn't hers. I'm not into Jason Webley's music, so I don't know what his body language is usually like, but she doesn't move like that or make those kind of facial expressions or hold herself that way. There are lots of people who do have intense/scared/stiff/otherwise nonstandard body language who are musicians--like Jeff Mangum, Laura Marling, and Daniel Johnston. It's awesome that their fans like the way they move or don't move (in fact I'm a fan of all three of them, and love watching videos of them). But I've been a fan of AFP for years and her body language and expressions in that video are super fake.

It just kind of hurts my feelings as a person who actually moves/looks like that. Is that a weird thing to say?

ETA: I think when I shaved my eyebrows I was possibly in some kind of shutdown that I might still be in. I think I've been in it for like two days. The Longest Shutdown sounds like the title of a children's book or maybe something for the Guinness Book of World Records.

I think I might need to talk to someone, I mean I started doing this blog as a way of being absent because I didn't want to feel things that might make me hurt myself. For the past two months I've been returning, and that is an odd experience, like your blood coming back into your hands after you've been cold outside. I don't know. It would explain why I can't seem to get anything done, if there's actually something seriously wrong with me. When I think about the UK I almost can't remember being there. I think of time visually and it's just, August, Christmas. I know I was there but I can't see it.

22 February, 2010

Living in the pregnant pause

(Hi, before you start you should know that this is not very much about what I usually post about--it's mainly about religion. As with many Christian traditions I halfheartedly absorbed just because I'm American, I feel that I didn't fully understand Lent when I decided to give up I'm Somewhere Else. Having thought about it more, I feel that Lent is a way of living and thinking and isn't as simple as just giving up something concrete, and I think this post is an appropriate post for me to make during Lent.)

When I was younger I used to think that all gay people felt empty and cried all the time because we're naturally unhappy people because it's an inferior state. I thought that whenever people did gay pride or anything, they were just trying to convince themselves, like the Emperor's New Clothes, and that when gay people said they were in love and wanted to get married, they were just trying to convince themselves they were in love, but really they were settling for someone they didn't really love.

This is probably hard to believe given how much I complain about being gay on this blog, but I don't feel that way anymore. There are still a lot of aspects of it that I find to be shitty, but I know they affect other people differently. Also, I just don't feel miserable. I think a lot of this has to do with my environment. When I was in high school I looked at all the shitty aspects of being gay and would just cry all the time, but I think that's because aside from the legit shitty aspects I was in an environment where there were lots of non-innate shitty aspects, like having to feel really nervous about everything I wrote and said, and having to feel cut off from being friends with both genders in different ways. These aspects were sort of under-the-radar and pervasive so I didn't necessarily see them. At Oberlin they are mostly gone, so even though I don't think that being gay is a fun time, I think that being alive while being a gay person can be a very fun time.

So, anyway, the way I used to feel about gay people is now how I feel about religious people. I drew a pretty good comic about it in class.



AFV: batter my heart 3-person God
God: (reaches down with a giant shining hand and wrests AFV's heart open) Hi! I'm here!
AFV: (looks happy)
AFV a few minutes later: (looking sad) Did that really happen. I probably just imagined it. AARGH I'm so alone in the world.

The fucking shit that God has done for me and I don't even care. Or, um, the fucking shit my brain is doing because the idea of there not being a God makes me want to die? Except, either way I just want to die so I can find out, at this point I feel like I'd rather be in hell and know there is a God. (I recognize this is kind of a messed-up thing to put on the Internet. I have no motivation to commit suicide, lots of fun stuff is happening right now and I'm a happy person, gay germs aside. I'm sure I will be agonizing about the afterlife for seventy more years, unless I get hit by a bus.)

I have actually figured out how I ruined my relationship with God. Amusingly, given that I now feel pretty normal about being gay, and horrible about God, in the time period when I felt horrible about being gay, God was just around. Sometimes people are like "it must have sucked to find out you're gay, you're so religious" but I wasn't raised in a religion at all. In fact I became religious when I was ten, after I had already started finding out that I was gay. It was my own thing. For a while I would tell God that I was sorry for being gay, but I soon figured out I wasn't. Even later, when I felt like it was an empty, horrible thing to be, I didn't think that God was mad at me for it or anything like that.

Sometimes I thought my prayers got answered. However, in twelfth grade I prayed for my music teacher, who was bipolar and would yell and swear at the kids in my class, to get better, because I knew something horrible was going to happen. I really loved my teacher, I was one of the only kids he considered worthy of apologies after he blew up. One time he awkwardly bought me flowers after making me cry in class. Anyway, I prayed a lot, and then something incredibly horrible happened. I think he wasn't even allowed back on campus afterward. After that, I didn't believe in the power of prayer, but I thought that God could change me if I wanted to be changed, and sometimes when I prayed I felt it happen--this grace, just something that altered my way of thinking about things.

Then at the end of first year I read Mere Christianity by CS Lewis. I always liked CSL when I was a kid but sometimes I think this was the worst decision I ever made. I always said Christian prayers because that's most of the little I had been exposed to, but I didn't really think Christianity was true. I remember watching the movie Jesus Camp and thinking "that sucks, those kids have a real feeling for God but they're being told all the wrong things about Him."

But then when I read Mere Christianity I thought a lot of it made sense. I started moving toward identifying as Christian. I also got interested in medieval studies and I was really moved by the way medieval Christians related to God. And I just thought that I wasn't Doing Enough. If I was Christian there would be certain things for me to read and certain things for me to do, in order to be a religious person.

The problem is because of my social shit it is pretty impossible for me to go to church regularly. For the past two Sundays I have gone to church and I think--could be wrong, could totally be wrong--that this will be the time it actually works out, because I have a friend who likes going to church and we go together, and no one really talks to us or anything, which is perfect.

Actually, I don't know why I said "the problem is." I have about eight problems. I would like to know what to do in church all the time, and be able to take communion. But it is scary to think about contacting people so I can get baptized and confirmed. Also, the really really really big problem is just that I have horrible doubts. And not just about the existence of God. I just find Christianity to be--well, I mean, it's very beautiful, and it makes sense, but--

Next year I want to live in Talcott, which is this really castle-y awesome dorm that is right next to the building where most of the creative writing and Latin classes are. Once I started thinking about living in Talcott, I remembered that the kosher co-op is in the same building, and wondered if it would be nice to join it. I remembered that last year I thought it would be nice to be in a co-op where they sometimes pray.

But then I couldn't even believe I had ever thought that would be okay, because I would probably like it a lot, and if I liked praying with Jewish people, then that would mean Christianity wasn't real. I realize now that I believe mostly in experience. I mean, I know I've experienced grace. But lots of people who aren't Christian have experienced things like that. I feel like my attempts at identifying with Christianity are just making me not believe in God because I find it completely impossible to reconcile Christianity with the things about God that I firmly and deeply believe.

Since I started identifying as Christian, I've become aware that lots more people than my parents (especially my father) are extremely contemptuous of religion. I mean, almost everyone I know is like that. It just makes me think I'm stupid and if I wasn't so stupid and deluded I'd be an atheist. I was reading some posts by chaoticidealism, who is an ASD person who's written some really good and important stuff about ASD and functioning level things, and is also Christian. She said that she has doubts, but that believing in God makes more sense to her than not believing in God, so it's actually less of a leap to be a theist. Maybe that's how I feel, now. The thing is I used to be so sure.

I keep meeting people and asking them if they're religious. Why would I do that? Who cares? Why do I need other people to make me not wake up in the middle of the night feeling incredibly terrified and alone all the time? (The other night I woke up and there was this voice singing outside and I didn't feel alone at all and I started shaking, but, fuck, that stuff never stays with me for long, of course, because that's just how stupid and horrible my brain is.)

I'm always screwing with my Facebook religious beliefs, trying to be clever and accurate at the same time. In the past year I've had "Episcopalian Quaker Deist," "Christian Universalist," "Affective Piety," "There was a pregnant pause before He said okay" (Belle & Sebastian), "Pray to God but row for shore" (a quote from Carnivale), and "Cretin." I guess these are all reasonably true (especially the Belle & Sebastian one) but "Cretin" probably gets the closest to how I feel.

"Cretin" means Christian. People started using it as a word for intellectually disabled people as a way of saying, God is for everybody. Our society hates intellectually disabled people, so now it is a Ramones song, but I like the original idea. I think that spending time with severely intellectually disabled people is a pretty good way to understand God, and this definitely isn't because I think that they are adorable saints, but I do think there is a deeper love in us that we try to constrict and deny the farther we get into the world. If you don't have language and you're not far enough entrenched in your standard culture to do impression management, I think that you experience and display that love in a more obvious way. I know a woman who tears up Bibles and scratches people in the face when she gets mad--I'm not saying severely disabled people don't have original sin--but she also hugs and kisses people as soon as she meets them. She doesn't remember people's names most of the time. I think that if we didn't remember we're not supposed to hug everyone, we would hug everyone. It's caritas.

I hope this doesn't come off as offensive but I seriously sometimes want a DDDD--Doctorate of Developmentally Disabled Divinity. I feel like maybe as I've tried harder to be standard, I've tried to make my feelings about God be standard too, and it's just not taking. It just makes me feel terrified, it has for months.

There has to be something under all the systems. There has to be something under all the words. I put all these words on top of God and now it's hard for me to see God. I'm always praying and it's like I need to pray to keep God alive. But what if there's a kind of prayer that stacks on top of God and hides God away?

I try to look at life like I have the brain disorder where you can see colors but you can't tell what anything is. Like an everlasting shutdown, but more fun. If you dislocate your mind like that, then of course you can see life is glorious, it's something more than the sum of its parts. But sometimes I'm afraid that that's all I can say about God. Maybe it's stupid that I find myself trying to say more than that.

(If you have any more faith than I do--i.e. about as much faith to fill a contact case, probably--please talk to me about this, I'm kind of falling apart.)

19 February, 2010

Passing As Ethics is a World

Or, the Only Useful Thing Glee Ever Did

Disability Blog Carnival #63--Relationships
(due tomorrow, you should write something!)

Autism is not all about being bad with people, even though that's what most people think (once you can talk). A lot of people are bad with people in different ways, but they only want to talk about us. How they can make us better. What they don't know is that being a person who was once bad with people is its own punishment. That is, it's a whole new way of being bad.

I suffer from a syndrome. It's called Passing As Ethics. I made it up, though, so I can call it whatever I want. Sometimes I call it Us vs. Them or Them vs. Me. None of these names do a good job explaining the whole thing, just parts of it. It consists of a collection of false beliefs. Or, exaggerations. Conclusions badly reached.

Fact: Autism Spectrum Disorder people look sort of weird to normal people, and some things are harder for them. To a Passing As Ethics sufferer, this means: the way ASD people do things is worse than the way other people do them--->ASD people should feel guilty if other people can tell there's something weird about them--->ASD people should feel guilty for stimming--->if a normal person isn't interested in something an ASD person says it's because the ASD person is monologuing--->if an ASD person isn't interested in something a normal person says it's because they have no empathy--->a friendship where one person talks most of the time is not a real friendship--->if a normal person doesn't like something an ASD person does, the ASD person should stop--->the opposite is definitely not true--->well, I think you get the idea.

All kinds of people can suffer from Passing As Ethics. A mother who brings her extremely sound-sensitive kid into a grocery store, then gets angry at him for crying, is a PAE sufferer. A teacher who tries to behavior-modify kids out of stimming or using big words, because it's "weird," is a PAE sufferer. And an ASD person who is unable to speak up when her classmates are saying things about ASD people that aren't true, because she doesn't think she can explain in less than four sentences, and she's interested in ASD rights, so if she talks a lot about something she's interested in, that would be monologuing, and that would be wrong--well, I prefer to say I have PAE, it doesn't have me. Who the fuck am I kidding, yeah it does. It has me really bad.

This post isn't about PAE in general, though. It is about how my disability affects my relationships. I think that talking about PAE in vague terms would be confusing, so I will just use specific examples instead.

Like most people who are writers, I like to talk about things I'm writing and things that have happened to me, especially if something is a good story. In a writing workshop, I met a boy named Noah who thought I was a very good writer, and I felt the same way about him. Noah and I haltingly came together out of mutual admiration, and began spending a lot of time together. We told each other about things we had written and interesting things that had happened to us. Although, I guess I talked more.

The semester came to an end and Noah didn't apply for another workshop. He said that he didn't feel ready to be in a workshop again. Early in the next semester, Noah decided that even though he wanted to be a writer, workshops made him feel self-conscious, and he was going to major in Psychology instead of Creative Writing. I bugged Noah about this, both because I wanted to be in more classes with him, and because I felt like it was what I was supposed to do. I always worry that I'm not as interested in other people as I should be, so I felt good about myself for being such a fan of Noah's writing. I made an effort to express this as much as possible; for example, I would introduce Noah to people by telling them that he was a good writer.

I started sleeping in Noah's room because my roommate and I were proving not to be compatible. Noah went to bed early and got up very early. When he got up, he would write for a while on his computer. When I asked to look at what he wrote, he said no. One night when Noah was asleep, I opened his computer and read his stories. A few days later I said, "Hey, Noah, would you be mad at me if I went on your computer and read your stories? Because I did and they were really good."

Noah felt very uncomfortable about what had happened. He told me that I couldn't stay in his room anymore, and for a while we didn't see each other very much. I was very upset of course, but I was also stunned. I hadn't imagined that Noah would be so upset that I had read his stories--and if you insist on reading this as a typical ASD lack of empathy, then I can't stop you. But the reason I was stunned was that I had a conviction that showing interest in another person was morally right. I had been worried about my friendship with Noah because I thought that I talked too much about my writing, my life, and my interests, and Noah mostly listened. I thought that I needed to make the friendship more balanced by learning more about Noah.

Well, I guess this does show a lack of empathy, but it's the PAE kind. The same lack of empathy that a mom shows when she takes her sound-sensitive child to the grocery store is what I showed to Noah. I expected Noah to react like my idea of a normal person, to react positively because I'd done something normal. This expectation was horrible because it showed no understanding of the person Noah actually was--a person who was self-conscious about his writing, and furthermore had actually said he didn't want me to read it.

This is one of the shittiest things I've ever done to another person, and is probably my best PAE story. However, lots of little PAE events occur when I interact with my roommate, Laura. I say things to her, and she doesn't answer me. When this happens, I think that Laura hasn't answered me because I was monologuing or saying something weird, and she thought it was boring or annoying. This makes me feel guilty and embarrassed. Then I feel annoyed at Laura for making me feel that way. I think that she's lording it over me because she's a normal person and I'm a freakish ASD person who doesn't know how to say the normal thing. Sometimes I just feel bad inside my head, but other times, if Laura expresses surprise about something I already told her about, I snap, "I already told you; if you didn't want to listen, that's your problem."

In my nonfiction workshop, they say you can't worry about making yourself look bad. Here goes: Laura is actually deaf in her left ear. I've lived with her for ten cumulative months in freshman and junior year, and I've known about her deafness since probably the first week. Yeah, that's right--I get mad at someone for not listening to me, even though if I actually thought about it, I would know it's because she can't hear me. I feel like there's some Normal Person vs. Freakish Disabled Person conflict going on, even though the lack of communication is actually caused by the normal person having a disability, and not even knowing that communication is being attempted.

I never thought of Laura as having a disability until I saw a person like her being insulted in an episode of Glee, a show that basically exists to insult disabled people. It turned my head around. The sheer irony and ridiculousness of me being embarrassed and angry about being disabled when Laura doesn't answer me because she's disabled is starting to make me realize how bad my PAE is, and how much I want it to stop. Well, I've been working hard at not noticing whether I'm normal or not, and Noah is helping out, too. "If I have something to tell you, I'll tell you" and "If I want you to leave, I'll tell you" are now staples he uses when talking to me. The other day I told him about ASD stuff, for hours. Apparently this is interesting. The whole time I was waiting for the other shoe to drop, but it never did.

Passing As Ethics doesn't just affect the sufferer. If you have PAE, all your friends have PAE too. But there is hope--with the right support, individuals with Passing As Ethics can improve and actually treat people like humans instead of Normal People to fear and resent.

I am trapped in my world of Passing As Ethics. But my friends are trying their hardest to pull me out.
"When people grow up they figure out that if they dress up as conjoined twins, other people may have something to say about it."--my high school viola da gamba teacher

18 February, 2010

my reply to her reply

(Hi: so I feel like this is an unfair thing to do, not just because I'm cheating on God, but because I'm only posting my responses and not what my professor actually said. I guess I feel like it would be wrong to post what someone else said. I basically feel that I really misunderstood comments she made in class that I took as her saying that ableism was going to be looked at in a really theoretical way and we weren't going to talk about how it affects specific disabilities. She was actually saying that we weren't going to read a lot of personal narratives and that she didn't want disabled students to feel that they had to educate anyone about their experience, and that classification of disabled people can be othering. She also totally missed/ignored what I was saying about accessibility, and was like, "in an academic class, which this is, you can get accommodations through the disability services office." And I think that a disability studies class taught by a nondisabled professor is problematic in general, unless the professor is MAGIC. But I feel like, by only posting my own emails, I might be making her look bad, so I want to be clear that she was pretty nice in the email, and didn't say the things about ableism that I misinterpreted her as saying.)

Dear [professor],

I'm sorry to hear that I misunderstood what you said, about classification and not studying personal experience, to such a great extent. I wish that add-drop wasn't so short, because then I would have been able to go to class more times before making my decision. As it is, since I have trouble changing my schedule and had never dropped a class before, I didn't really have any more time to make the decision. It took a lot of time (Wednesday through Sunday, I think) to make the decision and get myself used to the fact that my schedule was going to be different from what I expected. If I waited until after class on Monday, I would have felt like I was making the decision at the last minute.

I think it's possibly an inherently uncomfortable situation. The problem is that, while it's obviously wrong for a disabled student or students to be the zoo animal of the class who has to explain disability to everyone else, it is also uncomfortable to be invisibly disabled while everyone else is theorizing about it, especially if you don't feel that you're allowed to say, "I'm disabled." I don't feel that the class is [Ralph] Studies, but when [Ralph] makes comments in class, everyone knows that he is coming from a particular perspective and set of experiences, and if they are not disabled, they feel that he may have more understanding of certain issues. (At least, I hope they feel that way, because he does.) Note: "Ralph" is the only visibly disabled person in the class.

Like a lot of people with autism, I was raised to be hyperconscious of the way I speak and what I say. It is hard for me to participate spontaneously in class discussions because I am also trying to speak and respond to people in a standard way, and cover any lapses that I have in creating or processing speech (if someone interrupts me, I basically feel like someone has tripped me, and can't finish at all). On Wednesday, a person in class said, "I'm really interested in Asperger's, and they're taking Asperger's out of the DSM and they're going to call them autistic, and people with Asperger's feel like the identity they claimed is being taken away from them." Actually, a lot of people with an Asperger's diagnosis don't feel this way, identify as autistic rather than Asperger's, and are horrified by this response to the DSM change (which we see as very ableist, and basically coming out of mildly disabled people not wanting to be identified with severely disabled people--a very prevalent type of ableism which occurs in many disability communities). I've been thinking, reading, and writing about the autism/DSM issues a lot in the past few weeks. However, I felt like I couldn't say anything because it might take a lot of words to explain, and because I might be seen as dominating the conversation and trying to make it about a more specific issue (instead of classifications), or trying to make the conversation about my "Asperger's special interest," or whatever the stereotype is. It was just really uncomfortable because it would have taken more preparation to figure out how to talk about it, and I didn't have time to prepare, but I felt upset about it for days because it's really uncomfortable to have another person speak for you, and attribute sentiments to you that you find offensive.

It would have been nice to feel like I could just explain that I am disabled/what my disability is, I guess. At the same time I can imagine that maybe other invisibly disabled people want to pass, or feel like zoo animals if they're expected to explain themselves in that way. I have trouble with people not knowing, because then I just have to spend a lot of time wondering how soon they'll figure out that something is wrong, or what assumptions they'll make about me before they figure it out. (For example I had a professor who chastised me for not having done the reading and not being serious about the class, because in his opinion I didn't speak coherently enough to have done the reading, and didn't make the facial expressions that people make when they are interested in a class.) And it is especially hard if people are talking about stuff that is disability-related or especially autism-related, because I worry that I'm too emotional about it to talk about it in an appropriate way, or if I shouldn't say anything, which also feels wrong.

To conclude, I basically have no useful criticisms of the class, and I'm sorry. I just was upset, and figured I would email you, because sometimes it's hard to tell from the inside if you are feeling uncomfortable for a good reason or not. I'm really relieved to hear that I misunderstood the classification/specificity thing and I appreciate that you are concerned lest disabled students might feel that they are being studied or expected to educate other people about disability or ableism.

I don't agree that disability is the one identity category we will all embody. What about queerness?

I explained why I don't want to apply for accommodations and don't think that any standard accommodations would be useful for me. Also, I think that the whole setup, where I have to go through the disability services office, and bring in doctors' reports to prove that I'm disabled--well, I think it's kind of like a building with a wheelchair entrance in the back, where wheelchair users have to ring the doorbell and wait until someone comes outside and then ask the person to unlock the wheelchair entrance. To make the analogy more appropriate for my situation, let's say that the wheelchair user has CP, and has difficulty being understood, especially by strangers. If I understand the ADA correctly, this building is ADA-compliant, but I wish that buildings would have ramps in the front that people can use if they need them, without feeling like they're asking for special treatment. My desire for the autism and learning disability equivalent of this doesn't have anything to do with whether your class is "academic," by the way. I guess I mentioned it because I was dropping the class anyway and figured that, given the nature of the class, you might be interested in accessibility (which is also an assumption I might make about psych or neuro professors, or professors teaching a disability-related literature class, and so on). I admit I have somewhat radical views on accessibility, and I apologize for unleashing them on you, especially if you felt that I was saying your class wasn't academic.

Thank you very much for your reply, have a wonderful semester too (and I'm sorry for being so long-winded),

Amanda

(I'm being kind of a bitch with the wheelchair entrance thing, huh? also, here is a paragraph I cut:

I don't agree that disability is the one identity category we will all embody. What about queerness? Something I wanted to say about classifications, but didn't manage to get out in class, is that when someone tries to "reassure" me by saying I'm not disabled, I feel like the floor is being pulled out from under me. I know that there are parts of disability and queerness in everyone, but people don't look at me the way they look at Eli Clare, and people with regular brains don't feel the way I do about being found out. Neither do straight people. Being able to escape a certain amount of worry and ambiguity is something that certain people get, in certain areas of life. I'm jealous. I feel different from them, even if we're technically all different/all the same.)

16 February, 2010

A very important letter

Dear blog,

You are going away for a while (40 days). This isn't because I don't like you. I love you. It was so nice to have you when I was in Scotland because everything was so hard that I just had to disappear and come here so that I didn't have to be There anymore. But I've been home for quite a while now and everything is great. Except that I sometimes don't do my homework, or other stuff I need to do. And a lot of this is because I like writing in you so much that I sit down and start doing it, and don't want to stop.

You are more diabolical than Solitaire and other things with no benefit. You aren't more diabolical than the thing I tried to give up last year, because I lasted about ten days and had horrible dreams. Although, you are something I can tell my mom about (at least in the abstract). The problem with you is that you aren't all bad; I mean, in theory I am happy about you. I feel that some of the things I write about in you are interesting and useful to other people. Sometimes it makes people talk to me which is nice. Mostly Todd. I guess Todd will talk to me even if I don't have a blog.

I'm tired and having trouble putting words together, but this is my last chance to do so and I know I should try hard. I used to have some notebooks where I would try to explain my problems and interests to myself. Well, I like you better, because other people read you so I feel that you have a purpose. But what I'm saying is that you're actually worse, because even though you make it hard for me to get stuff done, you actually do have a purpose and are a good thing for me in a lot of ways. This makes you hard to say no to, because I can always think of a reason why it's good to write in you instead of doing my assignments and stuff.

Goodbye dear planet and baby bear. Goodbye, Mr. Man. Goodbye, castle raincoat and maybe when you are older facts will be different. I mean, in no time at all Christ will have risen and I will once again be able to use you as a not unproductive procrastination method when there are so many things to do and I feel scared.

Sincerely,

AWV

P.S. Except maybe the Blog Carnival if I have time.

P.P.S. If you are not a blog, thank you for reading, even though it's sort of eavesdropping for you to read a letter addressed to my blog.

Passing-as-ethics as usual

I'm trying to decide what to give up for Lent. I guess you're supposed to give up things that you like, but are neutral. I mean, I don't think you're supposed to give up things that you actually want to quit forever. Which is too bad because I kind of want to give up passing-as-ethics and this would be a good way to start.

I have talked about passing-as-ethics before but mostly haven't called it that. If you are confused as to what it means, here is an example of an ordinary conversation that turned into a ridiculous PASSING-AS-ETHICS MINDSPLOSION in one of the roommates' brains:

Roommate A: (enters room and sees Roommate B trying on different clothes) I haven't seen you in a really long time, wait did you have a meet? Did you win?
Roommate B: Yeah...well, not exactly, but I set a school record.
Roommate A: Wow!
Roommate B: Wait, this says "formal," I don't have anything that's formal--
Roommate A: Wait you didn't see what my parents got me! (takes out a mechanical hamster, turns it on, and puts it on the floor. Roommate B doesn't look at it until it runs into her leg while she is putting on makeup, then she looks down at it.)
Roommate B: Oh...wow.
Roommate A: I'm going to go Liam's room to do homework and he's taking a nap and I'm going to put it on his face to wake him up.
Roommate B: (putting on makeup) ...Okay.
Roommate A: (in a snotty voice) Sorry.
Roommate B: (distracted) ...oh...sorry...
(Roommate A picks up the hamster and storms out.)

THOUGHT PROCESSES

Roommate B: I am going to a party. I wonder what it will be like.

Roommate A: FUCK! Why am I such an alien who goes around talking about stupid stuff that no one is interested in and forcing everyone to look at my mechanical hamsters! Roommate B thinks I'm such a loser! She's always lording it over me and trying to make me feel bad for talking about things. What a bitch! She's such a fucking snob about everything and I hate myself!

PASSING-AS-ETHICS: making people have a lot of feelings for no reason.

catching signals that sound in the dark

Like most people, I love the Hensel twins, and have since I was little. I remember my dad bringing home the Life magazine cover for me. I just spent a lot of time looking at videos and pictures of them online. It's awesome to watch the way they move around. But it's also awesome to watch them asking questions in class and joking around with their friends, because this isn't a life that would have been available for them a hundred years ago.

One of the most obtuse passages I've ever read comes from the Wikipedia page for Schlitzie, my favorite circus freak:

Under the care of Surtees, Schlitzie continued performing the sideshow circuit until Surtees' death in the early 1960s, after which Surtees' daughter, who was not in show business, committed Schlitzie to a Los Angeles county hospital.

Schlitzie remained hospitalized for some time until he was recognized by sword swallower Bill Unks, who happened to be working at the hospital during the off-season. According to Unks, Schlitzie seemed to miss the carnival dearly, and being away from the public eye had made him very sad and depressed. Hospital authorities determined that the best care for Schlitzie would be to make him a ward of Unks' employer, showman Sam Kortes, and return him to the sideshow.


Okay, dude--I really like Schlitzie and would like to think that he lived a happy life. And from the way he comes across in Freaks, he seems like a sweet person who liked attention, so I'll totally buy that he was into being a sideshow performer, and that he felt sad when he stopped doing it.

BUT DON'T YOU THINK HE WAS ALSO SAD BECAUSE HE WAS LIVING IN A HOSPITAL? I mean, if I was living in a hospital for no reason, and someone encountered me there, I'd think it was really fucking weird if they were like, "Amanda seems really sad, she must want to be a sideshow performer." Maybe he just didn't like living in an institutional setting. You know, like almost every person who ever lived.

I am really into the show Carnivale, and one of my favorite things is a very minor aspect of the show. Ben's crush, Ruthie, is a middle-aged woman with an adult son, Gabriel, who is a pretty minor character. But we know that Gabe is intellectually disabled and performs in the carnival as a strongman, as well as helping set up rides and tents with the other young guys in the carnival. Ruthie used to be a snake charmer when she was younger, but now she's mostly the "barker" for Gabe's act. Since I am interested in the history of disabled people (especially intellectually disabled people) who worked as a sideshow performers, Ruthie and Gabe's story seems especially moving to me. I imagine Ruthie realizing that her child was intellectually disabled, and that he didn't have a disability that affected his appearance and could therefore be the basis of his act. I imagine her thinking about Gabe's options outside of the hospital--probably being locked away somewhere. But in the carnival, he could travel and be part of a community. As he got older, he turned out to be really big, and that turned into an act, which was great. And Ruthie doesn't have to worry about what will happen to Gabe when she dies, because he has things he's good at, and he's surrounded by people who have known him his whole life.

But obviously not every carnival was as friendly as the one portrayed in Carnivale. The only good thing that happened in the class I dropped was that we read a piece by Eli Clare, who is a queer trans guy with cerebral palsy. Part of the piece was about his interest in particular historical figures--disabled sideshow performers, and XX people who lived as men. But he admits that he doesn't know exactly why certain XX people lived as men, and that it isn't necessarily accurate for him to claim them as trans. And he admits that some of the sideshow performers may have been manipulated and abused, and felt that they had no choice but to be "freaks." I am interested in the same two groups of people, although I'm a lesbian instead of a trans guy, which proves how hard it is to identify who inverts "belong" to. The Well of Loneliness seems to me to be a story about deviant sexuality, but in the 1940s Michael Dillon, a trans man, identified Stephen Gordon as someone like him.

But I'm getting off topic. I was thinking about Amanda Palmer, who has been criticized at FWD/Forward for starting a band with her friend where they pretend to be a pair of conjoined twins. I don't think Amanda Palmer is coming from a typical ableist perspective, even though she is being ableist. I think she thinks of the idea of conjoined twins as just another part of the whole circus/carnival genre that she's always drawn from. I'm not super offended by Evelyn Evelyn, I don't think, but it does make me kind of uncomfortable. It just seems stupid (although I generally love AFP, don't freak out). However, I feel like if I think that this is really bad, then I have to think Neutral Milk Hotel is really bad, too. Although Jeff Mangum didn't pretend to be conjoined twins, he just wrote a song about them.

I mean, is it ever okay to view people with certain physical conditions as part of a genre? I don't think it's okay to go as far as Palmer has gone but is it okay to be into conjoined twins and make art about them when you aren't actually conjoined and don't know any people who are?

eta: I just deleted a little bit about whether ASD people are circus freaks in modern society, and whether Jeff Mangum can be considered a circus freak because of his mental illness and nonstandard body language--I need more time to write that than I have, because I was too brief and it came off like I was saying "Jeff Mangum and I can have circus freaks but Amanda Palmer can't" or something equally oversimplified and self-serving.

15 February, 2010

The lighter side!

So, I have been talking a little about Us vs. Them, which is a way that some nondisabled people think about spending time with disabled people (especially developmentally disabled), where they exaggerate the differences between Us and Them to a hilarious, and useless, result. And by hilarious, I mean...sometimes not hilarious, sometimes quite awful--but, yes, sometimes hilarious, in lesser forms.

A borderline awful/hilarious situation--probably not a huge deal in the long run, but fucked up because it's being done to a kid--is when an ABA therapist decides that telling weird/anticlimactic jokes is a bad thing for an ASD child to be doing. It is true that an odd, flat sense of humor is probably more characteristic of an ASD kid than a non-ASD kid, but does that really make it bad? This is passing-as-ethics as usual (I really need a tag for that). Besides, lots of non-ASD people enjoy that kind of humor--in fact, I know for a fact that some of these therapists liked The Office--but because it's an ASD kid, a huge deal is made out of it. Not much is funnier than watching a twentysomething hipster try to behavior modify a little boy out of telling ironic jokes.

A really hilarious situation involves this girl at my school who heads the organization that volunteers with intellectually disabled people. I guess I shouldn't post about people on my blog when it's obvious who they are. Oh well! Okay, so this girl is in the conservatory, and if you don't know, Oberlin Conservatory is a really big deal (I'm not bragging, because I'm not in the Con myself--actually it's really awkward when you say you go to Oberlin and people are all impressed and you have to be like "no, not the conservatory, it's actually attached to a college that is pretty average"). So, basically, if someone is in the conservatory, especially if they major in something really popular like this girl does, they are officially a Big Shot, and they've gotten something that a lot of people want to have.

This girl has a way of talking about intellectually disabled people that is kind of patronizing, in my opinion, and I had snarked on her before. But. This one time. She was talking about how we were going to go over to a group home and garden with them. She said:

"Gardening is really important because it's, like, a lesson--that teaches you about patience, about how you have to get something ready, and take care of it, and then wait for it."

So, if you were looking for something funnier than a hipster trying to teach a disabled kid not to be ironic, this is it--a privileged, 19-year-old student at a FAMOUS CONSERVATORY talking about teaching a group of middle-aged and elderly people who have lived in institutions their ENTIRE LIVES, how to be PATIENT.

That's Us vs. Them for you.

okay, this is what I sent

Dear [professor],

I am dropping your class. I feel like I have trouble relating to and grasping the concept of ableism as it is portrayed in the class.

The idea of not discussing specific disabilities or people's personal experiences makes me feel really confused. As a disabled person, I experience ableism in a way that feels very specific. For example, because I am not visibly disabled, I often get to avoid the experience of being stared at or treated oddly by strangers; but I am also expected to educate others about my disability in order to explain why I need help, and run the risk that people will simply refuse to believe my disability is real. Because I have a disability that is somewhat fashionable in the media, I get to be seen as interesting (albeit in a rather insulting way), while people with less fashionable disabilities, like Down Syndrome, are treated like wastes of space.

By using those examples, I'm not trying to say that I want to constantly talk about my own experiences in class, but just that ableism is often quite specific, and it's hard for me to understand it the way it's being presented in the class. I feel like I don't know how to talk about ableism without focusing on particular aspects and themes. I think that real and imagined classifications between different disabilities are a huge part of ableism, both abled-to-disabled and inter-disabled. I'm having trouble relating to what the class is about and I feel that I wouldn't do well in the class.

I also feel that the class is set up in a way that isn't accessible for me. The syllabus makes a big point of emphasizing that assignments have to be turned in on time, have to be typed and brought to class, and have to be formatted in a particular way. I have trouble planning tasks and switching from one task to another, and have a poor memory. So sometimes I am late to turn things in, because I forget to bring them to class, or because I write papers in longhand and underestimate the amount of time it will take to type and print them. This obviously isn't something I could apply for accommodation for because I can't predict exactly what the problem will be. Also, I don't want to predict that there's going to be a problem, because obviously I try to avoid making these kind of errors as much as I can. At the same time, I'm not currently in a position where I can be sure that I won't make such errors, so I would like to be in a class where turning in a paper late is not seen as extremely important. Those passages in the syllabus made me feel that I would be graded based on my memory and executive function skills, instead of my actual work.

I think that the syllabus assumes neurotypicality on the part of the reader, and this made me feel othered, as did the fact that in a class where most people are nondisabled, we seemed to be avoiding specifics. I think that avoiding specifics assumes that the nondisabled people in class have a good understanding of disability and ableism. In my experience, most nondisabled people don't, at all. (Not that disabled people are experts; we could probably use some specifics too.)

Anyway, I am not writing you this email not because I want to be rude or a jerk, and it is fine if you don't want to answer it. I'm just writing this because I am upset. I have autism spectrum disorder and part of what this means is that it really upsets me to change my schedule. I'm a junior and this is the first time I have ever dropped a class that I was planning to take. The idea of dropping the class made me anxious and for a while I couldn't even think about it, but I decided that being in the class would be more upsetting than changing my schedule. Obviously my feeling of discomfort in the class is my own, and may not represent the feelings of other disabled people in the class, but nonetheless I wanted to express it.

Sincerely,

Amanda

14 February, 2010

Public Service Announcement

Battlestar Galactica Pokemon



Pretty much the most important thing I've ever done.

the Eisley post finally (written before they left WB)

I used to really love this band. They were the first band I really got into on my own, at the relatively late age of 16, right after their first full-length album, Room Noises, came out. They seemed otherworldly to me--these beautiful, spooky-looking Christian homeschooled teenagers. They lived in Texas, a place I had never been, and they’d started writing music eight years before I heard of them, playing shows in their parents’ coffee shop and becoming well-known in the local music circuit. They finally signed to a label in 2003--they didn’t want to sign to a Christian label because they don’t make religious music, which is fine, but did they have to sign to Warner Brothers? Their label basically treats them like an embarrassment, not advertising them or having them make videos, and telling them to underplay the fact that some of their songs are about sci-fi and fantasy subjects because that might turn off potential listeners. And I have to wonder if their label is partly responsible for the fact that their second album, Combinations, was so much worse. I mean, I’m not saying there weren’t some really good songs on it, but most of it is just girly stuff--falling in love, breaking up, and having a lot of other feelings that aren’t clearly explained.

There’s nothing wrong with writing about girly stuff, but because the content of the songs is more generic it exposes what awkward writers the DuPree girls are. They know a lot of words, but they don’t know what all of those words mean, and they also seem to have trouble just putting together lines that sound good. Which means we end up with really bad lyrics like, “You will take the cherished people that I hold.” “That” is bad grammar! “Cherished” is a cheesy word! Even “the people I hold” seems like a needlessly roundabout way of saying “the people I love.” The DuPrees are extremely good singers, and in “Ten Cent Blues” the simple line “I can’t control my feelings” is stunning because of Stacy’s vocal quality. But soon enough, the awkwardness: “But then she chose to dissect me, and I was casted into poverty.” Number one, it’s “cast” not “casted,” and number two, are you a fetal pig? In “Ten Cent Blues” this awkwardness can be forgiven because the lyrics are dense, specific, and evocative, like a lot of the lyrics on Room Noises. My other favorite Combinations song, “I Could Be There for You,” has tenderly eerie lyrics (“Ring, ring, ring, ring, where are you hiding?/...You’re a cave, admitting who you choose, but I could be there for you”). But some of the songs, like the incredibly generic “Go Away,” are stripped of any intentional strangeness or magic, and all that’s left is the counterintuitive phrasing--instead of just saying he wants to break up, Stacy’s boyfriend tells her “we’re gone”--and obtuse exposition--”I could keep this all from you/Or I could make a statement based on truth/But then it all comes tumbling down.” These lyrics are boring and make no sense. I hope the next album will be better, but I’m not too optimistic, since the recently-divorced Sherri has written a song where she refers to her “apocryphal wedding” (so, Sherri doesn’t know whether her own wedding took place or not?).

But anyway, back to the nice part, the part about why I was so enthralled with this band when I first heard them in 2005. When it comes to the songs on Room Noises and the songs before that, the weird phrasings and hard-to-decipher subjects become charming if you notice them at all. While a lot more of these songs have sci-fi and fantasy lyrics, there is plenty of girly stuff on Room Noises. It’s just strange and thick with images. “I Wasn’t Prepared” is probably a breakup song, but for some reason the verses are about bees, and for some reason this is poignant. “Plenty of Paper” is a song about artsy, companionate love, but it casts the main characters as superheroes. “Lost at Sea” is another song that plunges you into a strange, vibrant landscape, so that when you get to the blatantly sentimental chorus--“I’ll always love you”--you’re moved and surprised. The band defends Combinations by saying they’ve “grown up,” but the love songs they wrote when they were teenagers seem much more real and intimate, more like love and less like a description of how love looks in People magazine.

I never listen to this band anymore, but this morning I woke up with the first song on Room Noises stuck in my head. It starts with a farmer crying about much he loves plants. Then he dies. Then he and his wife try to talk to each other:

Wife: I’m always wondering where you are, I’m always wondering where you are.
Husband: Darling, shouldn’t I be the one wondering? After all, I’m the one who is gone.

The two singers switch off in this vein for a while, before returning to the chorus, which tells us that plants make up for the hard times in life. Because plants are a symbol for memories, or something. Despite the gorgeously spooky harmonies, these lyrics are as sweet and idealistic as anything can be, but who cares? “Memories” was clearly written by some sheltered, geeky kids who liked to sit at home and read the Harry Potter and Narnia books, but those kids wrote with much more passion and creativity than the people they grew up to be. I just want them back.

SUPPLEMENTARY VIDEOS:



MEMORIES. This is from spring 2005 and is my all-time favorite video in terms of Stacy cuteness. I don't think she'll ever totally fall out of my celebrity crushdom, but I'd forgotten how infatuated with her I was when I was in tenth and eleventh grade. I obsessively read her xanga and basically thought she was the most beautiful, pristine, smart, wonderful, talented person EVER. The DuPree parents, who are sort of stage-parent-y, used to make a big deal out of the fact that Stacy hadn't started dating because she was EXTRA PIOUS, and I remember feeling really guilty about having a crush on her, especially since I'm a girl. As soon as this video started playing I got really embarrassed and had to put my headphones on, even though I'm in a room by myself.



LADY OF THE WOOD. This song is seven years old, and possibly my favorite--although maybe that's not what I mean. It is probably the pinnacle in terms of really genre-y spooky music, which is to say it's much more representative of the stuff they did when they were really young.





I COULD BE THERE FOR YOU/TEN CENT BLUES. These videos are from 2006 and 2008 (and the songs are on Combinations which came out in 2007). The first video isn't marked but it's from a show that A.T. and I were at. I got really excited when I heard "I Could Be There For You," "Like the Actors," and "Ten Cent Blues," because I was actually a little bored of the fantasy-ish angle and find those three songs to be really stunning. But the other songs on Combinations ended up being much worse and "Like the Actors" wasn't even on it, which is a travesty. (Full disclosure, I like "A Sight to Behold" too.) I feel disappointed by these videos because I was trying to find a particular video of Stacy wearing a sweater vest which led to me wearing sweater vests for YEARS.

I feel like I have too many videos of recent stuff so I will include this little bundle of awesomeness:



PRETENDER! This song is sort of nuts because: 1. it's from before Chauntelle stopped singing almost completely (which I think was about 10-12 years ago). 2. it's pretty obviously about how YOU SHOULD GET SAVED, which I personally think is nice. Not because it's about being saved in particular, but just because it's obviously very passionate and sincere. Some of their recent love songs have just seemed like really unconvincing attempts at emotion.
Erin: "When I was little, and I really liked things, I would just really want to hear people talk about them, so I would ask people what they were. Like, I would ask my dad, 'What's a whale?' and he would say, 'Erin, you know what a whale is.'"

13 February, 2010

The bird
Lodged in the chest cavity, tears at his feast
And tissues growing again get no relief.

the stuff in italics is what I'm actually going to say

I am dropping your class. I feel like I have trouble relating to and grasping the concept of ableism as it is portrayed in the class.

The idea of not discussing specific disabilities or people's personal experiences makes me feel really confused. As a disabled person, I experience ableism in a way that feels very specific. For example, because I am not visibly disabled, I often get to avoid the experience of being stared at or treated oddly by strangers; but I am also expected to educate others about my disability in order to explain why I need help, and run the risk that people will simply refuse to believe my disability is real. Because I have a disability that is somewhat fashionable in the media, I get to be seen as interesting (albeit in a rather insulting way), while people with less fashionable disabilities, like Down Syndrome, are treated like wastes of space. Because I have a non-physical disability, I am often left out of conversations about disability.

By using those examples, I'm not trying to say that I want to constantly talk about my own experiences in class, but just that ableism in my opinion can be very specific and it's hard for me to understand it the way it's being presented in the class. I feel like I don't know how to talk about ableism without focusing on particular aspects and themes. I'm having trouble relating to what the class is about and I feel that I wouldn't do well in the class.


I also feel uncomfortable because it seems that most of the people in the class are not disabled so I feel othered. By avoiding specifics, it seems like we're working from the perspective that everyone already understands a lot about disability and ableism, which, from my experience with most nondisabled people, couldn't be further from the truth. I also think that you set up the class in a way that isn't accessible. In the syllabus you make a big deal of emphasizing that assignments have to be turned in a very specific way (for no apparent reason), can't ever be late, and have to be formatted in a very specific way. I think that having very rigid policies about how things have to be done is ableist, because it means that people are being judged on their ability to follow a strict set of rules instead of the work they're actually doing. You have a special section on the syllabus saying that disabled students can go through the disability services office to receive accommodations. I think this is ableist because it means that disabled people have to do all the work to be treated equally. I don't see why a person can't just say that it's easier for them to email something, or whatever. I have a lot of trouble planning and executing tasks, so the fact that you have all these rules about how to turn in a paper makes it much harder for me to do a paper and this has nothing to do with my actual intelligence or ability to do the actual core of the work (the paper or whatever).

Also, I feel that this wouldn't be considered a legitimate accommodation by the disability services office because they are also pretty medical model and would just tell me that I should work harder to switch from one task to another. Stuff on an ADA level ("prove you need something very concrete, and I'll give it to you"), is something, but for someone who's teaching a disability studies class, especially a nondisabled person who's teaching a disability studies class to mostly other nondisabled people, it's not enough.

P.S. if anyone can help me figure out how to say some of the non-italics stuff in a briefer and less obviously distraught way, I'd love that. I realized that my only reasons for wanting to stay in the class are a)anxiety about changing my schedule, and b)it makes me really angry and I guess I want to call them out or something. A) is something I can get over, and am getting over by discussing with my friends the fact that my schedule will change, and writing the new schedule in places where I can see it. B) is completely ridiculous, I know, but I just want to accomplish a little of it, tactfully, with this email.

P.P.S. This is actually exactly what I want to say, if anyone can help me put it in the form of an email:



maybe I should just record it and send it to her (kidding)

If I am ever famous my answer to the big question

That's a hard question for me to answer because I'm a religious person and I feel like I don't know why God does things and just because something upsets me doesn't mean that it isn't part of some greater mosaic I don't understand. I mean, maybe God wanted me to have to learn about people in a systematic way because it means my love is more mathematical and apparent. Maybe people are always sort of foreign to me so they seem the way animals and trees seem to regular people.

I'll just come right out and say I'd rather have my homosexuality cured than my ASD. Being gay is more of a problem for me. For one thing, a developmental delay is just a delay and you can catch up. Obviously my whole ASD can't be summed up as a developmental delay. But some of it can, and the parts that remain are (in large part) things that I want that are weird things to want. But I've figured out how to get some of those things. And I expect to improve in both domains--catching up and figuring out how to get weird things. So it's complicated and everything, but it's not a block, it's something to think about and work around.

Being gay also comes in two parts. First it shuts you off from people so you have to learn how to lie or how to manage your lying. In the same area, the people you have a crush on don't have a crush back, so you have to work around it and have very intense friendships and stuff, and basically learn that there isn't only one kind of love, that you don't have to be a robot just because this one thing isn't feasible. The first domain is one I can work with, just like ASD. The second domain is the domain where you still sort of want the kind of love that you can't have. Unlike with ASD, I haven't figured out how to get this, and statistically I know it might not happen. This isn't ruining my life, but it is a block. I would say it's like missing an arm, but I don't know if people who are missing an arm actually feel that way. Maybe it's more like having a phantom limb or Body Integrity Identity Disorder.

So, I'd rather be straight. But that's not the answer you were looking for, is it? I'm supposed to be a less complicated person where ASD is my only problem. So, let's assume they found a cure for ASD but not homosexuality. Well, obviously I want it. And the idea that I'd be losing something (besides whatever side effects come from systematic love, etc.) is kind of like when queer-identified people try to pretend that all straight people are incredibly two-dimensional and gender-normative. It's possible to be a normal person who is intense about things and doesn't like parties that much and has serious experiences with color. That's the kind of normal person I'd want to be. So I could still do the same things. Also if I want I could be a social worker, a pastor, or a Latin teacher, or go and live in a foreign country without dropping out behind my eyes. Also I'd be a better faker so I'd probably be better at being gay. Who knows if I'd be gay if I wasn't ASD--so maybe you could kill two birds with one stone.

The problem is, though, that this is just an exercise, and curing ASD isn't very likely. What they are working on is just having people not be born. If that's your question, I would rather have been born, but thanks. Also, this isn't a question I think about very much because I have other stuff to do. And it makes me feel uncomfortable that you would ask me something like this. Can I ask you something overly personal and completely irrelevant about yourself?

12 February, 2010

Topic sentence-->mission statement

Of course I was reading about the DSM on Wikipedia, and found out about a new diagnosis called Sluggish Cognitive Tempo. This sounds pretty much like a description of the ways that I think ASD impairs my ability to get stuff done. I'm not saying that I was misdiagnosed with ASD and really have SCT; I have some ASD symptoms that aren't included in SCT. I guess SCT-ish stuff can be part of ASD, as with Sensory Processing Disorder.

As usual, it makes me feel weird. If this blog had a topic sentence it would be "I'm super high-functioning but not like those other high-functioning people." I know that saying high-functioning is considered really offensive etc., but I feel like I need to use a word to describe what I'm like, and I'm not saying it as a judgment on other people. I think that judging people for their "functioning level" is one of the most hateful things you can do. What I'm trying to say is that I currently get by without services for my ASD, and expect that I always will. I got some services when I was a kid but I would have gotten by without them. Things would have been worse but I think I would still have been able to go to college and eventually make friends, just slower. I feel like the worst thing that could have happened to me would have just been that my life up until the age of eighteen would have been shit and I would have entered college as a very frightened person who self-injured a lot. But I would have entered college, is what I'm trying to say. (By services I largely mean going to a small private school where a lot of kids had learning disabilities and outright bullying was rare. It's hard to explain to people if I was in special ed because I don't think of my high school as a special ed school, but it kind of was, and it helped me a lot in terms of learning some methods of doing homework and talking to people.)

Anyway, I feel alienated by the word "Asperger's," because as I've previously mentioned, I feel more comfortable with the labels developmentally disabled or developmentally delayed or PDD-NOS. I am more high-functioning than the stereotypical person with Asperger's; I can sometimes talk to people without them noticing anything, I have satisfying friendships, my special interests are not that intense and not at all apparent (I think--I manage this by reading blogs and forums about them instead of trying to have conversations about them). The areas in which I'm not high-functioning are not stereotypical Asperger's problems of being an obnoxious nerd.

This is why Francisco Hernandez Jr. has (somewhat creepily) become an iconic figure to me, sort of the mascot of this blog. What happened to him has to do with getting overwhelmed and retreating and fading out. This is what happened to me for the first few months that I was writing this blog. I just called it "I'm somewhere else" because I was studying abroad, but then it ended up being a description of my mental state while I was abroad. A persistent, sometimes fascinating, sometimes horrible absence. I can't remember if I posted this at the time, but at one point I kept wearing the same jeans long after they needed to be washed because I was too depressed to work up the energy to change them.

I'm not active and odd. I'm passive and odd. And I'm not really as odd as I used to be.

I am excited about the DSM V because I feel like they describe a kind of ASD that can actually fit me.

Because I feel so alienated from the mainstream face of Asperger's, the topic sentence of this blog can be further developed into a mission statement, which is "Just because a lot of people are making dumb movies about people with Asperger's, and just because someone thinks we're good at making rocket ships, or whatever, doesn't mean that we're actually that different from other developmentally disabled people, or that we don't owe them anything."

The house

It's so hard to remember everything I have to do. I brought my assignment to the creative writing house and I was supposed to put a copy of it in each person's folder. There were twelve people. It was hard to find the folders and it took me several tries to find everyone's folder. Meanwhile I was in other people's way. I put down my nonfiction workshop folder so I could concentrate better and have more freedom of movement. Finally I finished putting the assignment in all the folders and said, "I'm sorry" to the people standing there. One girl said, "It's all right." Then I thought that maybe I had really done something wrong because I was just apologizing to be safe and didn't really think I'd done anything. I had to get up early and was so tired and could feel that my hair wasn't clean. I wanted to go home, shower, and sleep. When I got home, after I thought about what I was apologizing for on the walk home, I went up the stairs and it was hard to go up every step. When I got in my room I realized I forgot my nonfiction workshop folder.

I just want to email my professor and tell her it's mine and I'll come get it soon, but she'll expect me to come and get it now. She'll just wonder why I didn't come right back and get it.

My parents have also sent me a box of food that I don't want to talk about or unpack and put away. I already have something from my aunt and uncle that I haven't put away or written them a letter about. I feel like people don't think about how mean it can be to send someone a present.

Sometimes I feel weird tagging these things "ASD" because they're possibly universal? I don't know how other people feel. I saw an ad for antidepressants that said "Do you feel like you have to wind yourself up just to get through the day?" I was surprised that anyone doesn't feel that way. My mom thought I was taking it too literally I think. I think that I'm going to pretend that I didn't realize my folder was missing for a long time. It's boring to have to fake stuff though. Is it weird for me to feel like it would be way too much right now to go back to the creative writing house?

Not even white birds

This term I'm taking (among other classes) Intro to Disability Studies and Abnormal Psychology. It seems like it would be easy to guess which class feels inaccessible and othering, but you'd be SUPER wrong. I don't want to be late to class like I normally am when I stupidly post in the morning, so I guess this is sort of a placeholder for a longer post.

But to start: on the first day of Abnormal Psych, at the bottom of the sheet where we had to write our major and previous neuro, psych, and bio experience, the professor wrote: "Anything else you want me to know (quirks, special needs, homicidal tendencies)?" This makes disability into a humorous personality trait that is not intimidating to talk about.

My disability studies professor had a section on the syllabus that said "Students with Disabilities," informing us that if we need accommodations, we can contact the Disability Services office. The previous section was a very long list of things that the professor will not accept: work that is late, work that is not a typed hard copy, work that is not in Chicago Style. My intent isn't to say "CHICAGO STYLE IS OPPRESSING ME" but I feel that if a class is incredibly obsessed with rules, that makes it less accessible. And I don't think this has anything to do with me being a lazy student, or something. I expect to have to work much harder in Abnormal Psych--a class where the professor cheerfully announced, "I used to be a hardass about deadlines, but I'm not anymore. A lot of things happen to people."

I should mention my disability studies professor doesn't have a disability, and neither does almost everyone in the class. The professor keeps saying we shouldn't talk about individual disabilities, just the way society constructs the "normal body." This makes me feel very alienated and unwelcome in the class, if that makes sense. We're basically studying nondisabled people. I'm sort of staying in for reasons of curiosity. Ironically, my abnormal psych professor told us that he has had mental illness, and he is spending a lot of time talking about different models of mental illness and whether mental illness is "real." The abnormal psych class is actually more like what I thought a disability studies class would be.

11 February, 2010

Henry Darger was a person

Picture of a flat gravestone with grass growing over it. It says: Henry Darger, 1892-1973, artist, protector of children.

Henry Darger was an ASD person who lived in the Midwest, like me. Like me he enjoyed praying and arts and crafts.

He was treated badly when he was a kid and he wanted very much to help kids. He tried to adopt kids sometimes, but no one would give a child to someone like him. He had one friend. He was a janitor and he spent a lot of time writing and going to mass. He collected pictures of kids who had been murdered, but his favorite disappeared. He said it was a huge calamity and disaster. He wrote 15,145 pages of a book about kids rescuing other kids from monsters and adults.

Everyone says that Henry Darger probably wanted to hurt kids and it’s lucky he never got to be around them very much.

Also everyone looks at his pictures and doesn’t read his books.

A Henry Darger picture. Hard to explain, they're sort of chaotic, but a bunch of little girls are standing around and there are some guys in what look like soldier's uniforms, and some nooses. It looks like some of the girls saved the rest of the girls from being hung by the soldiers. All the girls are wearing jumpers or dresses or skirts, except one girl who is naked, and is sitting on the ground to the side.

Henry Darger had one friend and his dad died when he was thirteen. He was put in an institution for being creepy, jerking off, or I suspect stimming. Henry Darger’s friend was worried about kids, too.

People are into naming their bands after him, but it’s already my name without even trying. I’m not sure why ASD people don’t feel more excited about Henry Darger. I like him a lot. My dad and I like going into Henry Darger exhibits and buying postcards with credit cards that have our name on them. My dad always tells people about Henry Darger using a worked-out series of phrases.



I think it’s important to remember that he wasn’t happy. We can’t think that arts and crafts is more important than happiness. Henry Darger is in a better place and probably doesn’t care, but he never got any of the money that people spend to get his arts and crafts in their exhibits.