31 March, 2010

so good

me: Liam, my mom's friend told me to date you
it was so awful
she was like "Amanda, you seem to be friends with a lot of boys, why don't you consider dating them"
Liam: whaaat?
oh no
me: and I was like "no thanks, I'm not interested in boys that way" and she was like "no relationship is perfect"
she was like "when you were talking about your friend Liam your face just lit up"
I was like "that's because I was talking about Christian the lion"
Liam: haha
me: I think she was excited because she's Irish
she got excited about your name
then when she left she was like "say hi to Liam"
Liam: oh no that is so weird
me: I knowww
so weird
and I kept trying to argue
Liam: im sorry indirectly
me: oh no I mean I think it's really funny
don't be sorry
I was like "the reason I don't get along with girls is because I like them, if I liked guys I wouldn't get along with guys. like when I was younger and didn't know I was gay I used to be like 'it would be so easy if I was gay, girls are so easy to talk to'"
and then she was like, "so being gay seemed like an escape from your problems!!"
Liam: :(
me: no it was classic
I love old people
Liam: haha
oh man
what are they trying to accomplish?
me: I don't know
who will ever know

30 March, 2010

Good Behavior and Psychoanalysis

Jelly told me about this person named Smockity Frocks who is a Christian homeschooling blogger and apparently never heard of disabled people before in her life. She took her post down and replaced it with a link to Autism Speaks (of course, because it's better to eradicate people with disabilities than treat them with charity and understanding) but it's cached here: http://docs.google.com/fileview?id=0B5C2Ta2YGCfTYmRhOTliZTUtNjQ5ZC00MmNjLWJmYzItNWU5MjNlYzU4ZTc3&hl=en

Basically, her post was about how she was at the library with her kids, READING THE BIBLE (for some reason that's my favorite part), and this other kid was waiting for the computer that SF's daughter was using. The other kid got very frustrated by waiting and started flapping her hands and saying, "I'm being really patient," to which her grandmother would reply, "Yes, you're being very patient, soon you'll be able to use the computer." So SF made a post about how no one understands how to treat kids anymore, and this kid was majorly spoiled and wasn't actually being patient at all, or something.

Then a bunch of people commented on it and were like, "This kid obviously has ASD and you fail at being Christian." Smockity Frocks was like, "Well, her grandmother should have made her read a book instead." Then the other people said, "That might not have worked with a kid who has ASD," and it all climaxed with Smockity Frocks declaring, "Well, YOU'RE not being very Christian YOURSELF, because what if I have a disability that keeps me from being able to tolerate kids who are BRATS??"

Oh, boy. There is a collection of response posts here from people whose kids have disabilities: A Message for Smockity Frocks. I haven't read them all but I like Kristina Chew's post a lot. Jelly also wrote a post, which is really good: Oh the joys of judgmental people. From my not especially thorough skimming, it seems like Jelly is the only ASD person who has written a post.

This was striking to me because I've been having a lot of trouble with waiting lately. I've said I've been having shutdowns but that's not really true because they're not really a state of bluntedness or distance, which is how I think of shutdowns; at the same time I don't want to call them meltdowns because I don't actually do anything. They're like proto-meltdowns, and they happen in situations like this, when I'm waiting for something to happen, or something to be over, and I get so tremendously agitated that I feel like I'm going to have...well, a regular meltdown. Which isn't practical since I'm 21. To stop it from happening I start trying to scratch myself with pens and stuff.

I'm sure that if someone looks around the room when a class is running long and sees me gritting my teeth and scratching my arms with a pen, it probably looks to them like I'm being a jerk and trying to tell everyone how much I don't like the class, but this isn't the case. Trying to judge other people's morals is a terrible idea, and CS Lewis explains this much better than I can in the chapter of Mere Christianity called Morality and Psychoanalysis. (I think this chapter isn't that specific to Christianity and can still be useful and interesting if you're not Christian.) CSL points out that you don't know what is happening to a person inside and it's not fair to just judge them by what they do because you don't know what they're fighting against.

[Note: I know that CSL equates homosexuality with having a phobia of cats. I think this is actually pretty charitable given his time period and culture, because he understands that a person can't help being gay and a gay person can be moral, or at least move in a moral direction. Obviously your mileage may vary, but I think he has a good attitude given his raw material.]

This is part of why instead of saying "high-functioning," "low-functioning," etc., I like to say "severely affected," "mildly affected," and so on. This means that instead of thinking about what the person appears to be doing, I'm thinking about what they are working against or around. This seems like a fairer and more accurate way of thinking about people.

The greatest story ever told: At the ASD school where I interned last summer, they used to take the kids on the subway. A lot of the kids had trouble taking the subway and their aides would try to make things easier, for example they'd hold a big clipboard in front of the kid showing how many points the kid was earning by being well-behaved. Also some of the kids would wear iPods on the subway.

Another thing that made the experience easier was being able to sit down. If people didn't offer their seats to the kids, the aides would sometimes ask. Apparently, one time they asked this woman if she could move over so one of the kids, who not only disliked standing, but also had a cold, could sit down. So she very slightly moved over and sat there glaring at the kid, who was squished in next to her. AND THEN HE SNEEZED ON HER FACE.

someone is right on the Internet

"When I tip over a carton of milk, I don't rush around demanding a cure for gravity...I first deal with the immediate problem by righting the carton and wiping up the spill."--Don Sakers in the AS livejournal community

28 March, 2010

sorry about posting 400 times today

but I have sort of been crashing, and I really liked this poem when it was in the New Yorker in 2002 the week my dog died, and it's a poem that I find myself thinking of, well, always when I am crashing. I just got home for break, and my mom has been going to workshops at the Autism Spectrum Resource Center and she was telling me about the people and I asked, "Are there any Amandas?" and my mom said, "no, there's no one as high-functioning as you." Also whenever my mom tells anyone I have Asperger's she says "But she's very high-functioning" even though I'm standing right there so I'd think the person would be able to tell if I'm high-functioning or not.

Anyway, I guess my question is if I'm so high-functioning why can't I do anything. I know the answer is that I can do a lot of things, for example we went to dinner with my grandmother and aunts and uncles and cousins and it was easy and no big deal, also my dad started a long conversation with me when I was doing something else, and I didn't whine or anything. Sometimes when this stuff is going on it just strikes me how easy it is now. I know that's good. It just frequently doesn't feel like enough. It turns into this creepy tug-of-war, like how I love going to the airport because I can take off my shoes and put my computer in the tray and go through the metal detector, and I love taking trains and subways because I know how, but then people ask me to do things that make me so upset, like my professor telling me we're going to have class on Tuesday instead of Thursday so I have to change my shift at work. When this happened I wrote on my knee:

"Life Is An Endless Mess"

and while I know this is dramatic, it sometimes feels that way and makes me want to cry.

I was thinking about my self-injury because when I did it I didn't have very stereotypical motivations. I basically did it to win the tug-of-war. Some people supposedly don't feel it or they like the way it feels but I always felt it, and I did it because I thought that other people wouldn't have been able to keep going, but I kept going to make up for all the other situations in which I couldn't keep going.

Anyway, this is the poem:

The Promotion
by James Tate

I was a dog in my former life, a very good
dog, and, thus, I was promoted to a human being.
I liked being a dog. I worked for a poor farmer,
guarding and herding his sheep. Wolves and coyotes
tried to get past me almost every night, and not
once did I lose a sheep. The farmer rewarded me
with good food, food from his table. He may have
been poor, but he ate well. And his children
played with me, when they weren't in school or
working in the field. I had all the love any dog
could hope for. When I got old, they got a new
dog, and I trained him in the tricks of the trade.
He quickly learned, and the farmer brought me into
the house to live with the family. I brought the farmer
his slippers in the morning, as he was getting
old, too. I was dying slowly, a little bit at a
time. The farmer knew this and would bring the
new dog in to visit me from time to time. The
new dog would entertain me with his flips and
flops and nuzzles. And then one morning I just
didn't get up. They gave me a fine burial down
by the stream under a shade tree. That was the
end of my being a dog. Sometimes I miss it so
I sit by my window and cry. I live in a high-rise
that looks out at a bunch of other high-rises.
At my job I work in a cubicle and barely speak
to anyone all day. The human wolves don't even see me.
They fear me not.

[I know this is the most emo post ever made, but if you want, you can bookmark it and then read it when you're feeling emo yourself and are in a state to handle it. If you read it when you're in a normal mood you might end up holding me in contempt forever.]

this is a transcript, obviously

Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."

Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.

So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.

Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]

...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...

I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.

I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.

I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."

I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.

But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.

Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?

But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?

I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.

I support Ari Ne'eman, part two


I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.

I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:

“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”

The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.

I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.

In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.

The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.

The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.

But I do think ASD mice would be really cute.

27 March, 2010

I support Ari Ne'eman obviously

So, as you probably know, Ari Ne'eman is a young Newfoundland with a disability (he's not really a Newfoundland, I just think he looks like one) and he recently became the first ASD person and I think also the youngest person ever to be nominated to the National Council on Disability.

However, someone put a hold on his confirmation because he is controversial because people who are ASD aren't supposed to have any opinions about ASD. Basically Ari doesn't believe in curing autism and has said things about disability being socially constructed, and since no one has ever said this about cerebral palsy or paraplegia or anything, that means that Ari thinks that autism isn't really a disability. (Kidding! I'm just trying to present both sides.)

It doesn't help that any time someone writes an article about Ari, they just obsess over the fact that he has ASD, and the entire content of the article is like, "ARI NE'EMAN IS A SPECIAL GENIUS BUT HE HATES VELVET AND WHEN HE WAS A KID HE DIDN'T KNOW WHAT SMILES LOOK LIKE." I actually used to really dislike him and groan whenever I read an article about him; I can trace my not-dislike of him to the moment I encountered an interview with him that was actually done by someone who knows what disability rights is.

It was really scary about the confirmation hold, not just because his confirmation is getting delayed, but because it might encourage more people to write articles about how Ari is a)A SPECIAL VELVET-AND-SMILES-HATING GENIUS, and/or b)doesn't know that severely ASD people exist, or doesn't care about them due to his impaired theory of mind (remember: he hates SMILES!). The scariest part is that Ari isn't allowed to talk to the media until he's confirmed, so the articles might just quote some random thing that he said in the past. Scary!

Except, it turns out that in the past, Ari said the most awesome thing ever:

And the New York Times article about the confirmation hold quoted him:

Mr. Ne’eman declined to be interviewed, citing the pending action on his nomination. But in previous interviews with The New York Times and other publications, he has argued that those most severely affected by autism are the ones who benefit least from the pursuit of a cure, which he suggests is unattainable anytime soon. Instead, he says, resources should be devoted to accommodations and services that could improve their quality of life.

Historically, the kind of genetic research supported by many parents of children with autism, Mr. Ne’eman has said, has been used to create prenatal tests that give parents the ability to detect a fetus affected by a particular condition, like Down syndrome, so that they can choose whether to terminate the pregnancy.

We just think it makes more sense to orient research to addressing health problems or helping people communicate rather than creating a mouse model of autism or finding a new gene,” Mr. Ne’eman has said.

The part in bold is my new Facebook status, followed by a bunch of <33333s, and probably will be for a long time. MOUSE MODELS!

I apologize a lot for the really giggly and lulz-y tone of this post, because I know that this is a serious issue and I want to express how much I support Ari--okay, quick, let's watch me try to sound really serious. I think that Ari is a very moral and very competent person. I think that rather than being a weakness, his age actually shows how incredibly passionate he is about helping other people with disabilities. And I don't think being in politics proves he's not really disabled. I think he does things that are very hard for him, because he feels they have to be done. And the hold on his confirmation is a really bad thing to happen to a really good person who does important work.

I'm relieved about the New York Times article, but the content of course is bad news. And hopefully some people with clearer heads than mine can write posts that address this more thoroughly.

okay, so

really brief question: do you ever think there's some really fucked-up gender thing going on in ABA environments, given that it's usually a bunch of young women who are telling male children and teenagers how to act, talk, and think?

I'm not sure if I'm joking or not.

25 March, 2010


"That's why reading is like sex, because it's like trying to shove your brain through a really small hole."

"I think [our professor] is like the king and I'm like Bisclavret--she's like, 'Aww! It's a beast, but it can show compassion, even though it can't talk or think.'"

Why I Dislike Person-Free Language

I know this sounds like it's going to be a really intense/hardcore post, however I'm actually about to take a nap so this is very scattered (I was going to be like "I'm writing some thoughts that I'm going to expand later"--but actually I'm just going to write everything I think in as disorganized a way as possible)

1. it is one thing for another ASD person to refer to me as "autistic" (or "Autistic," which I find weirdly touching) but it's quite another to be in a psych class and have my teacher talking about "autistic kids" in a very othering way. And I can't help but feel that if she said "kids with autism" it couldn't sound quite as othering as it does. And I find myself always, always saying "kids with autism" (or "people with autism" when I'm not talking about kids)--although I'm totally fine saying "ASD kids," "PDD kids," "disabled kids"--well, sometimes I say "kids with disabilities" but it's more just because I like the sound of it or something. But "kids with autism" is actually a phrase that's important to me, I don't think I would ever use the phrase "autistic kids" in class, and maybe not at all.

2. furthermore, the word "autistic" used as a noun makes me uncomfortable.

3. I should mention that I'm obviously not trying to criticize anyone else's word use, in fact I know that my frequent (if far from constant) use of person-first language, and the fact that I identify as "ASD" instead of "autistic," are probably minority ways of using language among ASD people who share my beliefs. Just sorting it out for myself, and not trying to say that I think other people are being offensive (I mean, I hope it's apparent that I respect and admire the work of many people who use that kind of language--including the person who I am parodying in my post title, of course).

4. my discomfort with the word "autistic" could be related to the fact that it's a really fucked-up word. In case you couldn't tell, the word autistic means "really into yourself." This implies a bunch of really offensive stereotypes about ASD people which are very pervasive (pun intended) and, I think, very dangerous. In one of my psych textbooks, the illustration for the "Pervasive Developmental Disorders and Schizophrenia" chapter is a photo of a little girl kissing her reflection in a mirror. My professor recently said "autistic kids see other people as objects and only want them for what they can get from them," and this is far, far, far from the first time I've heard a statement like that in my life.

5. well, that is not what I'm like and it's not my belief about what other ASD people are like either. Some severely ASD people may not be running up to other people and hugging them and saying "I love you," but that's the case for a lot of people with severe disabilities, and it doesn't mean they're incredibly self-centered, it means they're severely disabled. Lots of severely disabled people do care about other people, and it's hateful and dangerous to claim that they don't. It's just weird to me that, for example, the word "idiot" is considered by some disabled people to be offensive because it used to be a clinical term for intellectually disabled people--and yet no one is upset by the word "autistic," which has a very obvious root in the word "autos," and seems to me to be clearly offensive. I mean, I know we can't examine everything, but this seems like such a major thing.

6. then the question is, why am I calling myself ASD when ASD has the word autism in it? Who the fuck knows. I guess because I feel like when I'm saying "I'm an Autism Spectrum Disorder person" it sounds like I'm saying, "I have a disorder/am disordered, the name of my disorder is Autism Spectrum Disorder"--not straight out, "I'm autistic [self-obsessed]." Also, the word "person" is in there, you know? You do not hear professionals saying "person," you hear them saying "autistic kids" and (when they remember us) "autistic adults" and so, so frequently, "individuals," "clients," "consumers"--well, fuck that, what about HUMANS WITH DISABILITIES? You know, LIVING BEINGS? With feelings and stuff?

7. even though the word "sufferer" is obviously awful, do you agree that there's a difference between saying "a cerebral palsy sufferer" and "a guy who suffers from cerebral palsy?" Because those feel worlds apart to me, and I almost don't mind the word suffer that much in the second phrase--like, it's obviously incorrect, but there's a difference between something where I'm like "well, actually..." and something that makes me feel really uncomfortable and alienated from the person who said it.

8. I call myself: an ASD person/a person who has ASD/a person with ASD; a disabled person/a person who has a disability/a person with a disability; a stimming person/a person who stims; a developmentally disabled person/"/"--except, I mean these are the things I call myself in situations where I feel I can use those terms and be understood. I very occasionally say "autistic" when I'm speaking, because it's easier, but only to people I know really well. When I feel like I can't use any of the terms I like, I say "Asperger's" with it sort of sticking in my throat, or I say "I have autism"...

9. ....and, I just used up my whole nap time. SHIT.

affectionate disability issues

The Joe and Amanda Adventure wasn't one, because Joe wasn't as smiley as last week, and the teachers said that all the kids were in a bad mood because it was the day after their field trip. Something else interesting happened, though. After circle time, the teacher dimmed the lights (which for some reason resulted in Joe yelling) and put on some quiet music and had the ambulatory kids sit on beanbags, and picked up Joe and put him on a beanbag. She laughed and said, "It's really more for my benefit than theirs."

There is a kid in the class named Zach who frequently cries and seems angry. I don't know what his disability is but it's the kind of thing where if I was more educated I'd probably be able to tell. He's very small, uses a wheelchair, and has a really small, short face and small eyes. I like Zach because he's always trying to take off his shoe so he can stim by waving his sock in front of his face. Today I think he seemed interested in my presence when I showed up in the middle of their gym class, he was kind of looking at me and clapping and stuff.

But yeah, he was making a lot of noise after the teacher had dimmed the lights, and she picked him up out of his wheelchair and put him on the floor. I couldn't tell if she did this as a punishment, or just because she thought it was more appropriate for what was supposed to be a relaxing time. I feel like if she was trying to relax him she would have put him on a beanbag. I just thought it was sort of weird.

Zach crawled over to me where I was sitting in a chair. He took hold of my arms and with my help lifted himself into a standing position. Then he sort of turned so I was holding him in my lap. I sort of hugged him, but I felt weird about it because he's fourteen. When I first met him I thought he was seven or eight at the oldest, and I wouldn't have reacted that way, but I just wasn't sure if it had different connotations given how old he is, so I sort of made him sit back down on the floor.

Then he crawled over to the other side of the room where his teacher had put his wheelchair, and I got up and went with him. Zach was sitting next to the wheelchair and touching it. He reached out to me and looked at the wheelchair. I felt really bad because it seemed like he wasn't comfortable not being in the wheelchair and was hoping that I would help him (I may be totally projecting, but I don't know why else he would crawl away to the corner of the room if not to be near his wheelchair). I quietly talked to him and told him that he couldn't go in his wheelchair yet but would probably get to be in it again after the class finished listening to music. I don't remember what else I said.

Anyway, he started kind of having me pull him into a standing position, and then he basically put his arms around me, and I was sort of holding him (I was kneeling, I think), and he had his face pretty close to mine and I think might have been trying to kiss me--I got a bit of an impression of that, at least, so I kept turning my head away.

Now that I write this out, it sounds a lot weirder than I thought it was at the time. I mean, from a little kid I wouldn't think it was weird. I also know some intellectually disabled people who are very physically affectionate with people they don't know well, and it doesn't bother me at all, I think it's awesome. But because I'm confused about what the nature of Zach's disability is, I didn't know how to react, whether to classify him as the kind of person from whom such a display would be cute.

I'm thinking about this more and thinking about what hugging and kissing means, and what it means to define someone as the kind of person from whom hugging and kissing is cute, and the kind of person from whom it's inappropriate. I'm not sure it even makes sense for me to act as if there are people who are always allowed to do it and people who always aren't. I met an intellectually disabled guy who, when meeting women who were wearing low-cut shirts, would take both their hands and shake them up and down, staring at their breasts--his way of greeting people obviously wasn't "cute," and he was rather creepily taking advantage of the fact that people were going to perceive physical contact from him as "cute" rather than as sexual. Another intellectually disabled person actually had to explain to my friend why she shouldn't let Adam shake her hand. On the other hand, I know a woman named Andrea who likes to hug and kiss people, especially people she's seen before, and it doesn't strike me as creepy. But it's theoretically possible that Andrea is doing this for sexual reasons, whether or not she's aware of it. But I just assume she's not. I'm not saying Andrea doesn't have a sex drive, but just that this particular action of hers isn't necessarily sexual, and it doesn't seem obviously sexual to me.

If a fourteen-year-old boy who didn't have a disability started hugging me and climbing up on me, I would absolutely not be okay with it. But let's say, even, that Zach has absolutely no intellectual disability at all, but just can't communicate--well, that still means he's had a hugely different life from the average boy his age. And the reason I'd be upset by the average boy his age doing that is not because I think every single thing a fourteen-year-old boy does is sexual, but because the average fourteen-year-old boy will be trained to think of that as sexual and inappropriate behavior, so if he's doing that, it's almost an act of violence and it's definitely disrespectful. I don't know if, out of that context, it is inappropriate.

And besides, my example of Adam shows that an intellectually disabled person can be creepy as fuck, so then can't the opposite also be true? Why does Zach have to be intellectually disabled for this to be okay?

I know it seems like I'm weirdly invested in arguing that it's okay for Zach to hug me. I think it's because platonic physical affection is a major part of my life and my identity. I used to call myself "heteroaffectionate," meaning I fall in love with guys (I'm not sexually attracted to guys, for those keeping track). Basically, I've had several male friends with whom I'd hold hands, spoon/sleep in the same bed, and just do sort of semi-ironic things, like kissing each other on the top of the head, being each other's Valentine, etc. And I can be really intense about these guys.

I'm not really heteroaffectionate to be honest; it's not like I actually don't have any romantic feelings for girls. That's kind of a joke. But because I don't really date, I've had to figure out that there are a lot of other ways of being close to people and caring about them, and I really don't like the idea that you can only be close to someone you're in a sexual relationship with (which is an impression I get from some straight girls I know). It's really weird for me in the early stages of friendships, sometimes, because I might not know if the guy knows I'm gay, or even if he does, I'm afraid that when I do things that are seen as too romantic, he might not know what to make of it. So I guess this is why I sort of jumped on my reaction of "oh shit, I don't know if Zach should be hugging me"--because I know from experience that lots and lots of kinds of affection are not about sex.

I mean, yeah, he may be a creeper (or an unconscious creeper, who doesn't get that he's being creepy, but is nonetheless hugging me for a sexual reason). But he also might not even like girls, or like anyone. Or maybe I'm not the kind of girl he's attracted to. There are all kinds of nonsexual reasons for Zach to try to get me to hold him--sensory needs, platonic affection, a desire to feel more high up and secure like he does in his wheelchair.

This may be an unpopular opinion, but I sometimes feel that assuming disabled people are always being sexual doesn't make any more sense than assuming that we never are.

P.S. I got to see Shawna, who is a little girl with autism and mental illness who I met two years ago, who was one of the first DD people I ever met. Well, she's not so little anymore, she's eleven, and she's really tall. She was just standing around near the gates of the gym so I went up and talked to her and put out my hand, and she held my hand and reached out and touched my collar, which I recall she does a lot. She was saying something she maybe used to say, that sounds like "walking, walking, walking" or maybe "wanting, wanting, wanting"--but after a minute one of her teachers told her to come away from the gates.

24 March, 2010

Also, I have a question for people who are good at neuroscience

I'm interested in intense world syndrome, which is the theory that autism is caused not by being indifferent, but by having overly strong emotional reactions (especially fear reactions) and taking in more information than you're able to process. I'm really into this because it seems consistent with all facets of autism, whereas more socializing-focused concepts of autism seem to cut out large parts of what it is (see everything Simon Baron-Cohen's ever done).

Anyway, my understanding of neuroscience is really poor, but I have a question about cortisol. Isn't it the case that if you produce a lot of cortisol a lot of the time, you eventually become less able to produce it? The reason I'm curious about this is because I have been so fatigued in the past year (I thought I had anemia, but I just got back my blood tests and I don't), and I often find it really hard to get energetic about anything. Is it possible that having really strong reactions could eventually lead to having really dull reactions? All the stuff I'm experiencing now is, IIRC, the opposite of what I was like as a child.

Additionally: as a child I was extremely, unusually smart, and I think quite verbose; and although I'm not of below-average intelligence now, I am for example a pretty slow and dense thinker sometimes, often have to work hard to talk, and as I've mentioned before I often read very slowly especially compared to the way I read when I was younger (it's hard to remember when the change occurred; I remember having a lot of trouble at age 16 and being really quick at age 13, so it's somewhere in between them).

Two YouTube things

I love the Internet:

I have a mildly autistic daughter. She's 11, and she shares a great many of your reported behaviors and, I think, feelings. We also have a hard time telling what's autism and what's just the unique brand of weirdness that every individual person has. I wouldn't worry about it too much. (I know, easy for me to say!) By the way, I hope my daughter turns out as self-possessed and self-aware as you seem to be. Thanks for posting. Stay shiny, Browncoat!

However, what I came here to say was that if you aren't watching Dave Hingsburger's videos about working in institutions at the beginning of his career, you should be. They're...well, I don't think "great" is the word exactly, but I think they're important. I should warn you that this particular video made me cry a lot, and that they're all pretty disturbing so far.

Here is a very good transcription.

23 March, 2010

this is a picture of my friend Todd:

20 March, 2010

I couldn't resist

however: I just got this email from my parents with a list a mile long of everything I'm supposed to do. Today my friend John and I ran away and wandered around Lorain County going to garage sales and diners. I figured out that I'm always behind on everything I'm supposed to do anyway, so I might as well try to clear my mind and feel genuinely joyful when I'm procrastinating. I just sat in John's car staring at the God light. Yesterday my friend Liam and I climbed on top of one of the dining halls and watched DVDs on my computer, then walked to the Laundromat in the middle of the night and talked about how next year, when we're roommates, we're going to go to the Laundromat even though it's more expensive, because we like Laundromats. Then we snuck into Finney Chapel when it was dark and closed, and knelt in the pews and talked about morals, and lay down on the stage and sang Christmas songs.

When I have a social life, I feel like it's better than anyone else's.

Okay someone better get excited

A few months ago I made a post about how much I liked the TV show United States of Tara last year. The first episode of the second season is airing on Monday and I'll probably be posting about every episode so I thought I would briefly shill for it and attempt to get other people interested.

Before I start, though, I should say that I wasn't as conscious of ableism when I watched the first season as I am now. I'm also probably much less conscious of ableism regarding mental illness than I am regarding any other kind; writing about ableism tends to focus on physical disabilities, and in real life my experience is with developmental disabilities, so I think I'm less likely to notice when people with mental illness are being discriminated against. United States of Tara is about a woman with a rare, "exotic" mental illness, Dissociative Identity Disorder. It's a comedy (/drama). Even though I don't know anyone with DID, I am pretty sure that Tara's experience in the show is very unrealistic. She has very distinct, cartoonish alter egos who are different ages and genders from her, have their own specific styles of dressing and talking, and behave outrageously. Tara's feelings about her mental illness, and people's reactions to it, are often portrayed as serious--but the actual behavior of the alters is usually meant to be funny.

I don't know how I would feel about this if I had DID or a similar illness. I think that I like how Tara's DID isn't portrayed as something incredibly tragic and heavy. It obviously is a problem, but for Tara's family, the alters are just another part of life and they can be funny. Of course, maybe I'm just rationalizing this because I like the show. I'm hoping that FWD/Forward or another blog that writes about disability issues in TV shows will have some posts about United States of Tara.

But yeah, now that I've done disclaimering here are some reasons I watch the show:

1. I love Toni Collette a lot (because I'm gay okay, fuck you, it is not my fault).

2. It's written by Diablo Cody--which I know is the opposite of a reason to watch something in some people's opinion, but I really don't get all the hate. I mean, so what, the characters say snarky things and make references. I think it's fun.

3. Some of the reactions people have to Tara's DID are really spot-on depictions of the stupid things people say about invisible disabilities, like when Tara's sister refuses to believe that Tara's DID is real and claims that she fakes it for attention, or when one of Tara's clients says "I think all women have DID, a little, because we all have to be so many different people in one day."

4. Tara's 15-year-old daughter is a cool character because she is a stereotypical rebellious teenage girl (she dresses in an "edgy" way, has sex, etc.) but she is really smart and resourceful. Tara gets stressed out about the things her daughter does, but we're not actually made to think that the daughter is stupid or a bad person.

5. Tara's 14-year-old son is even better because he's a gay character who is neither written as a stereotype or written against stereotypes. He happens to be quirky and kind of girly, but not in a really obvious musical-theater way like Kurt from Glee. He's just an odd kid who is gay. Also, even though there are problems that come from him being gay, they're not necessarily the expected ones. His parents and sister are completely used to him being gay, for example, and don't even see it as an issue.

author's note

this is my feeling about the situation:

(I have multiple feelings, that's why you like me)

18 March, 2010

Were the World Mine

I just watched this really strange, good movie, Were the World Mine (well I watched it on Wednesday night/Thursday morning, but I've been stimming out on it since then so it's basically like I've been watching it nonstop for the past three days). It's about a gay teenage boy who is put upon in every possible way--he goes to a private school where he's bullied by jocks, he lives in a small town where everyone is cartoonishly homophobic, his mom thinks he's ruining her life, and he has a crush on the only jock who doesn't bully him, who appears to be straight. But never fear, Timothy is a boss singer, and relaxes by indulging in ridiculously awesome fantasy sequences.

If you can't tell from this video that this is practically the best movie ever made, I should emphasize that it's not "fabulous." I think they tried to market it that way because one of the posters features Tanner Cohen making a dramatic facial expression on top of what I think is a marquee. I really prefer this poster, which better evokes how sad and weird the movie is:

To me the word "fabulous" means something where feminine gay men are used as a joke or a harmless spectacle, and not treated as real people. This isn't the case in Were the World Mine at all. Timothy is a passive but angry character, and the fantasy in the above video isn't harmless at all; in context, it's actually rather mean-spirited and bitter. Timothy casts the jocks he loathes as the comically swishy backup dancers in his fantasies, making them caricatures of the mannerisms and identity they bully him for having. When he calls the demasculinized jocks "fairies" it's not supposed to be a quirky pun; it's an assertion of the dominance he doesn't have in real life.

He ends up getting it in real life, though; about an hour into the movie, Timothy is looking through an old edition of A Midsummer Night's Dream, which is being performed as a musical at his school, when he finds a recipe for the love spell used in the play. After following the directions, he produces a flower that squirts juice onto people's eyes and makes them fall in love with the first person they see. Timothy uses it to make Jonathan, the guy he likes, fall in love with him, but when people react negatively to their relationship, Timothy gets pissed off and makes all the homophobic people he knows fall in love with someone of the same sex.

This causes trouble because people get attacked for being gay, especially because the spell makes them really dopey and prone to public displays of affection. Also, Timothy only has two friends, a boy and a really annoying girl who have a crush on each other, and he accidentally made the boy fall in love with him. Timothy's drama teacher, who's implied to be a lesbian and some sort of magical being, is the only person who knows what's going on. She eventually convinces Timothy that what he's doing is wrong, and he reluctantly undoes the spell. This sounds like it might be depressing, but a)for some reason the spell has made it so no one is homophobic anymore, and b)it turns out Jonathan was actually gay in the first place.

I didn't mind Jonathan being gay--it had been sort of set up the whole time--but I thought it was cheesy that everyone stopped being homophobic. Also the homophobia was really cheesy in general; there's more than one scene in the movie where someone dourly turns to Timothy's mom and says, "Your son is a homosexual?" I don't really think these aspects of the movie are a huge deal, though, and I'm puzzled that I've seen reviews describing the movie as really awful in parts and good in others. I'd say it's mostly awesome and the weaknesses don't detract that much from how good it is.

This one clip that I keep watching over and over is the scene where Timothy auditions for the musical. He starts out singing nervously, but his confidence builds thanks to the encouragement of the ambiguously gay, ambiguously magical drama teacher; then, halfway through, the scene transforms into a blue-tinged fantasy sequence where Jonathan and Timothy walk through the halls with the jocks lurking creepily in the background.

The transition starts when Jonathan hears Timothy and the teacher singing, and peers into the room. We know from earlier shots that Timothy is standing next to the drama teacher, who is playing the piano. But from Jonathan's perspective, we see this:

In the same moment, Timothy begins to sing by himself: "We fairies that do run/From the presence of the sun/We follow darkness/Like a dream." This moment just about breaks my heart--the ache in his voice when he says "fairies," the fact that there is no "we fairies" because he doesn't know anyone gay except himself, the surprising accuracy of the lyrics when applied to gay people, especially gay kids; but largely the shot, in which Timothy is looking very cool but also very small, talented but alone.

The Joe and Amanda Adventure!!

On Thursday I get to go to the special ed school and I'm in a class where they don't seem to do very much, and I know I should ask to be switched to another class where I can be more helpful, but I totally never will because I am in love.

In my class there is a boy named Joe who is eleven and has short bristly hair, a flat skull (side to side, not back to front), heavy-lidded eyes, a big nose, and not much of a chin. I keep going on the Internet and trying to figure out what disability Joe has, and how I could cause my future children to have it (kidding!) because he's soo tremendously cute. He reminds me of the puppets from Coraline. I'll stop carrying on about Joe's physical characteristics because I think I sound sort of like a Nazi doctor, but I'm just trying to say he is really cute.

So, last week my Joe infatuation began because I got to hang out with him during gym class and try to induce him to walk his walker-thing around the gym (according to Wikipedia it's called a rollator, it basically keeps him strapped in a standing position and he can stop moving and rest his head on the shelf, and it has wheels, but he pushes with his feet). I couldn't really tell if Joe was into me or not. I did see him kind of opening his big mushy mouth in what looked like a smile, so I felt hopeful, and then all week I carried on about my love for Joe until my memory of him was sort of worn away, and I was really scared of going in and having Joe not like me when I have built him up in my head as the Most Adorable.

So, when I went in Joe was right next to the door, and he was just standing there in his walker, and I crouched down to look at him, and guess who was way more friendly than last time and lifted his head up from the shelf and looked around and if I understand correctly was totally smiling and stuff and walking really fast!! I could be wrong. This requires further investigation. But I think we are friends.

P.S. During circle time the teacher talks in this really loud cheery voice and the only verbal kid is really noisy and yells out the answers, and I have a theory Joe doesn't like it because he clasps his hands together really hard and sort of punches himself in the ear. <333

P.P.S. I did some more Joe Research on the Internet and he looks like the little girl in the first two pictures on this page. It made me really sad because I guess he has lissencephaly and it seems like a lot of kids with lissencephaly die really young. I hope he doesn't have one of those kinds.

P.P.P.S. Joe's class makes me sad in general because I feel like every kid should have their own aide and get the chance to use a communication device but they only have a few aides and they don't have any communication devices. It just makes me upset because I feel like they're not getting anything done and they all look really spaced out a lot of the time.

P.P.P.P.S. Some of the kids were making trouble and the teacher said, "I think some of us aren't going to have cookies at lunch," and Joe who never makes any noise suddenly yelled "Baaaaah!" in a really angry voice and she had to be like, "Oh no Joe, not you!"

P.P.P.P.P.S. I think the difference between high-functioning autism and low-functioning autism is that people with low-functioning autism get confused as to whether the obviously computerized voices on answering machines are real.

17 March, 2010

He was smiling through his own personal hell

So I remembered all my terribly abandoned plans about Lent, and I still stand by my decision to start writing here again, but my plan to think more seriously about God hasn't really happened as much as I'd like. So I'm going to try to write something that is to some extent--hopefully--about morality.

I think goodness is hard for me to understand. I've said this before and I'll illustrate with a story that is, in retrospect, really funny. Also I'm going to use fake names because it makes me feel special. I'm pretty much the jester of the Lord.

When I was in twelfth grade, I read some articles about the musical Spring Awakening and got really excited about it. I didn't have many friends so I ended up asking my parents if one of them would take me, and my dad agreed to take me. Unfortunately, when I came back from winter break, before I'd seen it, this one girl Emily, who was really strange but popular among the theater kids, had already become obsessed with Spring Awakening and she and her friends would constantly go and do student rush. It was sort of frustrating because I was in this awkward position where I desperately wanted to be friends with Emily and the other kids, but I just wasn't, and now I felt that I wasn't allowed to like Spring Awakening, because they liked it.

In an unrelated turn of events, soon after winter break I realized that I had a huge crush on Emily. I'd be about to brush my teeth and then I would just be standing there completely still, thinking about her, and I couldn't even turn on my toothbrush because the sound would upset me too much in my fragile state. Once I skipped play rehearsal because I got really scared that instead of my lines, I would just accidentally start yelling, "I WANT TO HAVE SEX WITH EMILY." I was incredibly anxious and miserable and twitchy, and just incredibly, incredibly guilty that I felt this way--and if you understand why this is about to be funny, then maybe you have seen Spring Awakening and you know that there's a character who acts exactly like my high school self:

When I (now reluctantly) went to see the musical with my dad, I was so extremely taken in and destroyed by what happened to the Amanda Forest Vivian doppleganger that I went into this weird stunned state for hours, and yelled at one of my teachers for not counting so I could keep up with her during an instrumental performance that happened later that night. I bought a t-shirt and a CD, but as soon as I got home I put them away in a drawer because I felt like I couldn't be into Emily and her friends' thing. It would just seem like I was copying. Which sort of sucked because I think it would have been really helpful for me to be able to listen to it, given the subject matter. Basically as soon as I graduated, I became a superfan for the whole summer.

But in February, when I was really in the depths of my Emily obsession, and basically hating myself and crying in the car on the way home from school (here's a really hilarious journal entry I wrote around that time, if you're curious), one of Emily's friends, Karen (I know, I'm so good at making up names), developed a huge crush on Gideon Glick, one of the cast members of Spring Awakening. Every time they went to the stage door, she would try to talk to him as much as possible, etc. etc., or sometimes she was too shy to go and Emily would have to go and get a message for Karen, etc. etc. Now, Gideon Glick looks like this:

I know you can't know for sure, but Gideon Glick is a guy who, if I found out he didn't like making out with girls, I wouldn't be all that surprised.

But Karen was.

Gideon Glick did an interview where he mentioned that he didn't like making out with girls, and Karen was fucking despondent! I mean, she was sort of joking, but also sort of not. She sat on the couch in the green room and all their friends clustered around her expressing their sympathy, while Karen nodded sadly and squished her hands together.

So, let's review: Karen was very dramatically expressing her unrequited love for a gay dude (a gay dude out of the many dudes in the world, who by and large like girls) who she didn't really know in real life, and everyone felt sorry for her. Meanwhile, I was unrequitedly in love with the bizarre but fascinating and very moving Emily, a person I saw every day, who I was forced to talk to on a regular basis while I pretended nothing was wrong, because if anyone found out, it would just mean that I was really gross and creepy and a predator.

I wanted to punch Karen in the face. Because I wanted to punch her in the face so much, I figured that it would be really, really charitable, and exactly the kind of thing God wanted me to do, if I went up to her before English class and said, "Oh, hey, Karen, I'm sorry about that guy you like." So I did.

Karen blinked and said snottily, "Oh, Gideon Glick? Oh...well, it's okay." She shrugged with the air of someone who has too much pain to share with anyone else; she sighed, and settled again into her limp Gideon-Glick-is-gay posture, against the wall across from the door of the class.

I almost went into some sort of fit of rage. What the fuck, Karen! I tried so hard to be charitable to you! I totally pushed down all of the totally horrible and intense and sad feelings that I have every day about Emily, and I tried to care about your stupid crush on some obviously gay actor in a musical, when I don't even know you very well! What the fuck!

Ever since this happened, it is sometimes hard for me to decide how good is too good. The problem with striving for the best is that sometimes the best simply isn't possible, and trying to do something really good might just result in you being really, really angry and, well...less Christlike. Like many people who are disabled, and also probably many college students who aren't perfectly suited to the way college is, I spend a lot of my energy just trying to think about how to get through the day. And I guess it's hard for me to decide how much to take "getting through the day" into account when I am making decisions. I mean, sometimes I think I take that so much into account, that I forget about goodness. But I'm also afraid of trying so hard to be good that I end up just really angry, if that makes sense.

16 March, 2010

Slightly Happier Math Exercise

As you might but probably don't remember, because you weren't here (except Ari who creepily went back and started arguing with me about my calculations), I one time wrote this really complicated post called the Sad Math Exercise about how I can never get married because I only want to date people with ASD, plus I'm gay, and ASD and gayness are both more common in boys which I am not, THE MISERY!

I guess it sounds like this might be a lead-in to a post about me announcing I'm in a relationship, but don't worry, that will never happen. I was just thinking today when I was at work that maybe the Sad Math Exercise doesn't have to be quite as sad as it is because I think I could date a regular person if they had cerebral palsy.

Like, I think the main issue is really my physicality--okay, part one, I think it's harder to communicate with someone who is not a stimming person, but part two, it's just very uncomfortable to be a woman who moves like I do and I spend a huge amount of time feeling jealous of guys for being allowed to move stiffly or bouncily when I have to constantly feel terrible about myself because of the way I walk and feel like I'm so much worse than practically everyone I know just because I'm stimmy and sometimes trying not to be stimmy and my proprioception is terrible so all my movements are very dramatic. I think that it would be nice to have a relationship with a person with CP because I would be able to go places with them without unfavorably comparing my movements to theirs.

However, while I was thinking this when I was at work, I was sort of backing it up by being like, "the one person in the world I feel terribly, easily close to is a person with CP, so maybe there's actually a specific body language overlap," and then I got all excited and was drawing ASD + CP = true love forever on the imaginary tree in my head

but then I was in class and my friend called me like eleven times, it was really awkward, and when I called him during the class break he started yammering about how he took the Simon Baron-Cohen test and I was like, "buddy, you don't need to have autism, I still like you," but then he started listing the billions of things that he read that prove his ASD, and telling me about his mom's problems when she was a kid, la la la, and I started, somewhat gloomily, to sink into the belief that there was no magical ESP connection between our disabilities and that the reason I like him so much is just that he's really been like me all along.

It's sort of depressing. I'd like to believe in fluidity, or love or something. This doesn't really discount my Math Exercise though, it still makes sense even without this particular experience to back it up.
I read the Onion AV Club about 400 times a day and for some reason I'm always really struck by how much they suck at talking about disability. They act like they're so cool and then they call people "handicapped" and "mentally handicapped" and "the handicapped" (I'm not even kidding, The Handicapped, like an army) and "CEREBRAL PALSY SUFFERER" and fucking "crippled." They live in New York so it's not like they have an excuse. I guess because I like them so much I'm always just like "...really? what the fuck is wrong with you?"

Anyway, Noel Murray is my ~favorite~ (actually Tasha Robinson is, but he is my favorite boy because his name is Noel) and today I read a movie review he wrote about a movie with a character who's developmentally disabled (I couldn't tell from the review if the character is intellectually disabled or ASD). GUESS WHAT NOEL MURRAY CALLED THE CHARACTER?


four for you, Noel Murray! You go, Noel Murray!

"this I used to believe"

When I was thirteen I went to school in a gauntlet. It took a while for me to understand what this meant. One went to middle school. One was intrigued by the new building and stopped to watch boys knocking each other to the ground in the middle of the hallways. One felt crowded because one didn’t like noise. One tried to scrape out a place for oneself, in class, by saying weird things and chasing Richard around, both hitting each other with math books (whatever math was then).
Back then, in sixth grade, one was still kind of shut away from the world in a particular wing, although one ventured out, for gym, for art. On sunny days, all the kids were let outside to kick balls and make out under the trees, except one who was writing poems and listening to some older teachers talk about a girl in seventh grade who made a hit list and got suspended, one teacher saying, “She’s a nice girl. It’s sad. They just tease her so much.” And one knew, sort of--one had always known one was going to be the kind of girl who makes a hit list. It was just a matter of time.

If I expected words as withering as the ones in movies, then I was watching the wrong movies, and if I expected violence, then I forgot I was a girl. What developed around me as I progressed, making the wrong moves or just moving wrong, was an explosion of words without meaning, and endless, endless motions never carried through.
By the latter I mean goosing, jumping at me, making as if to grab my crotch or my thigh, and laughing when I flinched. Or coming at me, wielding a pair of scissors and letting them get within a few inches of my eyeballs before turning them off course. This is what I mean by the gauntlet, a tremendous difficulty, a brittleness in one’s chest as one is getting one’s books together to leave for the next class. And one is older now, and not sequestered away; one walks out the door, and one plunges into the gauntlet. One is tested on one’s reflexes and one always fails.
There are verbal reflexes, and that’s what I mean by the former, which is boys asking me on a date, even though I’m known and know myself to be not the kind of girl people ask on a date. Pale and flabby and ageless, I think, trying to fend off Taylor’s oh-so-ironic proposal: “Please, please, go out with me, come on, Amanda, just one time,” and finally, “If you go out with me, I’ll give you a dollar. You can buy a dildo.”
But that is not what I mean, and neither do I mean being accused of jerking off during the school play because I was rocking back and forth in my seat. Because the sexual stuff was always the cleverest stuff, and what I’m really talking about, besides people hitting my backpack so I slightly fell forward, is just a collection of words that are neutral and even cute--“bookworm,” “stairwell girl,” and most permanently my own last name called out to the extent that when I heard it said, at the doctor’s office or on our answering machine, I cringed. I’m still hoping I can marry out of it because it always feels like an itchy second skin, an epithet that for some reason is typed out on my birth certificate and my student ID.

But never mind. Christine was minor league, back in sixth grade--all those people who write books about how mean girls are to each other have never experienced the gauntlet, which is almost always populated by boys, the only people vicious enough, most of the time, to lean out and snarl into your face about how ugly you are when you are twitchily picking your way from art to math. Christine was just part of the pre-gauntlet situation, which maybe explains why in seventh grade, during the development of the true gauntlet, I distracted myself by making a new screen name and anonymously messaging Christine, telling her I was going to come to her house and kill her. I was with Megan, a friend from fifth grade who now went to Catholic school and was CCD enemies with Christine from way back. Megan and I were giggling. I don’t think we thought of what was going on as evil, or thought that Christine could be scared, although in retrospect we should have been able to see that she was getting increasingly terrified.

I was always taught never to swear when I was a kid, and I believed in it so hard that sometimes I would swear accidentally, compulsively, when I was alone, and then break down in tears. I don’t know why you would tell a kid like me something in such a serious tone of voice, but I guess my parents had their reasons.
I generally believe what I see. It’s not that I don’t believe in other people’s humanity, but that I had to meet it first. And the first time I said fuck you to one of the kids who was goosing me, I thought the world was going to explode, but he just laughed and imitated me in a high, lilting voice. This was not a meeting. And it also wasn’t a meeting when Christine said pleasantly, after some sort of encounter in which I had been asked how much I weighed and why my hair looked the way it did, “Come on, Amanda. You pretend you like being weird, but everyone knows that you wish you were pretty and had a boyfriend.” Which I did. She was joking, kind of, we were kind of friends--but as I said my verbal reflexes were poor, and as those books point out, as if they’ve thought of it for the first time, friends can treat each other badly.
Anyway, her mom called the police, and I was shocked when I found out that Christine had a mother and that she could cry. That’s when I started believing in her insides again.

For the rest of school, I’m not embarrassed to say that I sometimes imagined holding down the boys of the gauntlet with guns to their heads or cutting off pieces of their ears. I wanted to believe in them. I wanted them to wear it on the surface, like I do--to be reduced to squirming, to begging, to flinching. To swear.

another thing not to say on livejournal

(which in this case I managed to suppress)

If you've never heard the word "ableism" or "disablism" before, then maybe you aren't going to be as good as identifying it as someone like me who is interested in ableism and thinks about it a lot. Of course you could argue that I'm hypersensitive to it because it's frequently on my mind, but even if I get some false positives, you're still probably going to be getting almost completely false negatives because it's just not in your frame of reference. I mean, if someone from an English-speaking country had never heard the word "tiger" before, would you expect them to be able to tell if something was a tiger?

15 March, 2010

This is pretty much all I have to say here

(although I don't know what it means and it's not finished, but it makes me feel good--not happy, but moral, which is a lot more important.)

You have eyes like a cow
Staring out at me
You have a voice like I don't know what
Inside me

I will die
I will die
Before I eat a cow with your eyes

You are the moon and the stars around
Which I orbit
You are the grass, you are the ground
You keep me here

But when you cease to keep me here
You won't disappear
When I collapse
You'll still remain

And I would die
I would die
Before I ate a cow with your eyes

14 March, 2010

No, no, no, no, no

I don't know what to say, you guys. Once a week I'm going to get to go into a school and hang out with kids who can't talk and can't do some other stuff. I guess I'm glad that I know some people who can talk, because talking can be fun, but sometimes I feel like the ratio in my life is a little too biased towards people who can talk, and I'd like to have more people who can't talk, or at least talk differently. The more I think about the kids I met on Thursday who can't talk, the more excited I am for my summer job where I'm going to spend a huge amount of time with people who talk differently or can't talk! And do other kinds of stuff that I think is interesting.

I think I'm not a very good person and I've felt this way for a long time. I think that it's helpful for me to be around people who don't do some of the things that we sometimes incorrectly assume everyone does, that we sometimes assume are part of being a person. This isn't some Lovaas shit, never fear; it's awesome because they are people, because it reminds me of how stupid and fallacious my concepts of existence are. Also, I invariably get reminded of how arrogant and blinkered I can be, when I make some assumption about how much a person can do or understand...and then they do the thing I thought they couldn't do! Which is wonderful. It's amazing to feel so happy about being proven to be a jerk, and I feel like it's sort of the essence of being Christian, or being the kind of person I want to be.

Being with people who don't pass for nondisabled is exciting because I don't have to worry as much about passing, and can sometimes even experiment with trying to go in the opposite direction, to see if the person responds to stimminess and stuff. Overall, it just feels sometimes like a much better, deeper way of being with people, better than the way I feel about being with anyone normal, except my really good friends.

So, I am really prone to flip a shit when I hear or read anything that seems insulting to people who are more severely disabled than people with an Asperger's Syndrome diagnosis. I try to be nice but it's really hard to worry about being nice to the person I'm talking to when everything they're saying seems either like it's mean to more severely disabled people, or like it's trying to erase them. I don't see Michael John Carley, Temple Grandin, et. al, as people who just have a different opinion that I should respect. Because if everyone's being so respectful, where the fuck is the respect for people who can't talk and wear diapers? Talking about respect just implies a world where everyone can do those things, where the only people being insulted are hypothetical. That is not the world I live in, or even want to live in.

13 March, 2010

me trying to be a badass on livejournal

it's not a situation where both sides are equal. Saying "Asperger's is going to be taken out of the DSM" doesn't make sense, because that isn't true (by that definition of "being taken out of the DSM," Autistic Disorder is also going to be taken out, but I don't hear anyone saying that). Saying "kids with Asperger's are going to be forced to be in classes with severely autistic, nonverbal kids" doesn't make sense, because that isn't true. Saying "people with Asperger's are now going to be considered not to have any condition at all" doesn't make sense, because that isn't true. Saying "people with Autistic Disorder use diapers/headbang/etc., and people with Asperger's don't, so they should be considered to be different disorders" doesn't make sense, because that isn't true across the board, and even if it was, there are lots of disorders where some people use diapers/headbang/etc., and some people don't.

I don't have to respect opinions that don't make sense or are based on things that aren't true. And it's very hard for me to respect opinions which (in some cases) seem to have a basis in ableism.

ETA: [J.] and plenty of other people who are verbal and who don't use diapers or wear helmets have to share the Autistic Disorder diagnosis with people who do. I have to share the PDD-NOS diagnosis with people who do. If sharing a diagnosis with people who have certain problems that you don't have is so horrible, then why aren't any of us bothered about it? Probably because we're not elitists like Michael John Carley and we realize there's more to a person than whether they can control their bowels.

(Yeah, at this point I'm sort of being an asshole. SOMETIMES I GET OVEREXCITED, OKAY.)

10 March, 2010

The Veil/On Speaking Badly, part 2

Sometimes, in writing workshops, people will just start evaluating your character! It's sort of hard to tell if this is cute or offensive. Especially given the evaluation I received last night:

"Amanda speaks from behind this veil of shyness and uncertainty, and, like, in class she's always apologizing and you think she's just rambling, but the veil is deceptive; behind it there's this brute force of powerful honesty."

No, I fucking don't know how people can say this stuff out loud. Veil? Am I Sirius Black? I'm not even exactly saying it's a bad thing to say, but just that I'm impressed that someone can come up with an image so fast and just spit it out and have it mean something right away. Or even if he wrote it down first, how did he deliver it in a way that didn't sound scripted?

And therein lies the problem.

I am not the way I talk. I just want to say that, over and over again. I mean, there are some classes where I would describe myself as shy but this isn't one of them. Sometimes I don't do the reading, so I don't talk then. I talk during workshops. I say stuff. Even in classes where I don't talk, it's not like talking makes me terrified. I just know I'm a shitty talker, that I sort of mumble a bunch of words, as simple as possible, definitely not anything as smart as talking about a veil--I mean, any attempt to use creative language just turns into me sounding the way people with schizophrenia talk in my Abnormal Psych textbook. Is it disorganized speech if you're capable of speaking normally if you plan it out beforehand? Well, it doesn't really matter, I can't exactly plan for every topic that could possibly arise. So it comes out like this, or not at all.

But I'm not. Fucking. Shy.

This is a situation I'm kind of prone to, where I make a really mean blog post about someone who I actually have no problem with in Real Life. This guy in my class is a really good writer and seems nice. I don't doubt he meant what he said completely positively. But it's kind of weird to have your speech issues characterized as "shyness" and a "veil." And the fact that you don't lie (which isn't a choice) characterized as some sort of accomplishment or virtue. I don't know. I mean, my story wasn't very good and I understand that a lot of people were saying it was "honest" maybe as a way of being tactful. That's fine. But that doesn't mean I have to be told that I'm honest.

If I just say what I think, people tend to laugh because it's so plain and brief--and that is maybe part of why I say so many ums and apologize so much, just to kind of mask it and pad it a little. But I'm so fucking careful about what I say in class! I can't believe someone still thinks it's rambling.

As you can probably imagine, I spend most of my time in class feeling incredibly stupid. And then, sometimes, it just hits me, when some jargony English major says, "Why are you so sure the speaker of this poem is a woman?" when the poem is about being pregnant--I'm actually smarter than some of them. It's just the way I talk. I remember when I realized last year, in my Aeneid class, that my professor's look of bafflement didn't mean my translation was actually bad. He was just knocked off balance by The Veil.

I'm sort of joking calling it The Veil, of course; it's not a way of hiding any more than any other way of talking is. It's kind of stupid that my inability to adjust to the way people are supposed to talk in different settings, and the fact that I think of content more slowly and tend to have to cover for that by any means necessary, are seen as being some sort of disguise. Other people talk differently in class and out of class, and even in different classes. Isn't that more of a disguise? If you're going to call anyone's way of being a disguise, I mean.

Just like I'm stuck sounding stupid, there are presumably ASD people who are stuck sounding smart. Actually, no presumably about it, I just met one. He can do pretty much everything I can't, and I'm sort of jealous, but on the other hand he probably doesn't get half as much free stuff as I do. In non-academic contexts, the way I talk can read as very charming.

08 March, 2010

The Nicest Moment of My Life

I swipe cards at the dining hall. I'm sort of the backup cashier for when it's busy, and people aren't used to there being someone at my register. As you may know, normal people have a lot of trouble adapting to new situations, and would rather wait in line for five minutes at the main register than walk a few steps to mine. Sometimes when the main cashier is on break they'll just stand forlornly at her empty register, waiting for her to come back, as I frantically wave my hands to get their attention.

(One time this girl was waiting there and a guy with Down Syndrome, who also works in the dining hall, had the guff to talk to her--presumably asking if she needed help, or what she was doing there. She just shook her head as if she couldn't understand why he was talking to her. When she finally realized I was there she didn't even laugh or apologize like some people do; she just walked over and held out her card with the same expression on her face, probably thinking about how she's going to be president someday.)

Anyway, today a big crowd of people were clustering around the main cashier and one guy noticed me. He made his way over and we had the following conversation.

Guy: Are you open over here? Are you swiping cards?
AWV: Yeah.
Guy: Oh, so people are just being retarded.
AWV: (swiping his card) Yeah, pretty much.*
Guy: Or, I mean--they're being silly.
AWV: Oh, thank you for not saying retarded! You're great!
Guy: Yeah, I'm trying not to say it anymore.
AWV: That's so awesome. That makes me so happy.
Guy: Oh, well, I'm glad.


*I know, I know. It always sort of hits me, but I don't want to get in a fight; people just get pissed at you and don't care and tell you you don't understand language.

I think I'm in danger of falling in love with Lauren Lopez

She reminds me of the kid from Home Alone.

(I know, what happened to the tumblr? Soon I will post about something legit. I'm going to post about language and ASD people not necessarily being able to switch between different styles of speaking. If you recently had a conversation with me about this, my post is probably about you! I'm just trying to think of a fake name for you. I hope you're excited.)

07 March, 2010

Crazy Jane and Jack the Journeyman

Although I know when looks meet
I tremble to the bone
The more I leave the door unlatched
The sooner love is gone
For love is but a skein unwound
Between the dark and dawn

A lonely ghost the ghost is
That to God shall come
When I, love's skein upon the ground
My body in the tomb
Shall leap into the light lost
In my mother's womb

But were I left to lie alone
In an empty bed
The skein so bound us ghost to ghost
When he turned his head
Passing on the road that night
Mine would walk being dead


(oh no, now I can't stop)

Crazy Jane on the Day of Judgment

Love is all
That cannot take the whole
Body and soul

And that is what Jane said.

Take the sour
If you take me
I can scoff and lour
And scold for an hour

That's certainly the case, said he.

Naked I lay
The grass my bed
Naked and hidden away
That black day

And that is what Jane said.

What can be shown?
What true love be?
All could be known or shown
If time were but gone

That's certainly the case, said he.

05 March, 2010


I have no good stuff to say nowadays, that's why I don't. However I went to the sheltered workshop/day center for intellectually disabled people, which I hadn't been to in almost a year. Some stuff happened. I had a pretty wonderful time. Afterwards we (the Oberlin students who were there) were talking to the workshop director and I was expressing my disappointment that this guy Mike Perez who I really like wasn't in our class (basically this girl is organizing a thing where a lot of Oberlin students go in, a few every day, and work on art and writing stuff with the intellectually disabled people). The workshop director, who likes me for some reason, got on the intercom and called Mike Perez to the office.

Mike came in and looked at me. I had been saying he wouldn't remember me. I said hi to him. He looked at me.

"Green hair," he said by way of greeting. My hair is actually blue now but it was green before.

"Yeah," I said, "remember, you took a picture of my hair to show to your dad."

"I was worried about you," Mike said.

"Why, what were you worried about?"

"I was worried that you wouldn't come back."

"Well, I'm here," I said, "I mean, of course I came back."

The workshop director said that they could put Mike in my class, instead of the one on Thursday. Mike said, "Yeah--I was in that class because I thought that you weren't coming back, but now that I know you're back, I'll be in your class." He shook my hand and left.

(None of this is very "aww" or anything, Mike is not a sentimental person. He's sometimes jolly or angry; otherwise he is just kind of flatly crotchety. But I'm really glad about this.)

03 March, 2010

I wanted to tell you this

I am going to counseling on Friday but I've basically thought that there's something wrong with me because I'm experiencing constant derealization and frequently I have to concentrate to keep from screaming/crying about something that ordinarily wouldn't be a big deal (waiting for a sandwich, waiting in line, waiting for a class to end). This started a week ago. Well, maybe it happened before, but I noticed the day I shaved my eyebrows. For periods I have thought "oh, it's getting better" but they're only periods. It's not permanent. I can hardly understand what people are saying sometimes, it just looks like a bunch of colors.

I got scared that I was going to be a person who loses skills.

Fortunately I saw Noah who is going to be a psychologist and is basically a joy, and I told him and showed him how much I have to press on my hands with my fingers all the time in an attempt to keep myself inside, and how I feel like I'm constantly in a state of yammering "I can't believe I'm alive, I can't believe I'm alive right here, right now" (this sounds nice but it's not, not all the time--derealization starts out seeming really fucking spiritual or something, but then you're like, shit--I can't do anything when my brain won't stop telling me I'm alive, I can't even feel God because I'm stuck in a creepy spaced-out box of my distinct moment and place).

Anyway, I was talking about how scary and weird it is to find out that something's been wrong with me ever since I came back from the UK--I mean, that must be it, because I'm taking like no classes, two of the four only meet once a week, and Noah was like, "what about your workload?" and I told Noah my workload and Noah was like, "That's a ton of work."

And I was kind of shocked. But like, I think it might just be a ton of work. Maybe I can't get anything done because there's so much to do.

In other news: I think everyone thinks that they like sex too much. Well, I mean, obviously some people are asexual. But I think you can even be asexual and think that you like sex too much. Or think that you want a girlfriend or boyfriend too much. Or that no one eats as much junk food as you do or does as little homework as you do or is as ugly as you or smells as bad as you're afraid you smell. And I think this is especially true for ASD people because we are trained to think of ourselves as deviant and overly intense--but it probably is the case for a lot of other people, too. I just wanted to tell you this because I thought of it later.