How Indistinguishability Got Its Groove Back

is something that might someday appear in all its parts and might not. Right now I'm primarily interested in writing about staff infection. Spoiler alert though: the answer to "how did indistinguishability get its groove back?" is exactly that.

Or like I said before: it never really lost it.

I think there are two reasons "staff"--very broadly defined as doctors, teachers, therapists, aides, and a million other people--end up trying to control people with disabilities.

1. They believe people with disabilities inherently need to be controlled.

2. They get in a position of power because of people with disabilities' support needs and/or youth, and have the opportunity to make people with disabilities more convenient to deal with.

Whichever reason is not your reason can be used as a straw reason to support the real reason. I could give examples but basically you know it when you see it. Doing this relates to the Harder Fallacy and Shocking Behavior and things like that.

The way indistinguishability got its groove back is that a person with power looked at a person diagnosed with autism and decided they didn't like the way person's body looked or the way the person felt about things. Or (I say when I get angry) the way the person said no.

The person with power started trying to change the person with autism's body (or whatever). The person with autism couldn't defend themselves because they couldn't talk. Or, if they could, other people felt their beliefs, opinions, and arguments were inherently weaker than those of people without disabilities.

The person with power told their coworkers or their employees or the other people in their field to do the same thing. They by and large did.

Occasionally someone was bothered by it but afraid of losing their job, being seen as a pushover by their coworkers, or not being respected by other autism scientists. But most people weren't bothered. Maybe the original person with power was very charismatic and converted them. Maybe they already didn't like how the person with autism's body looked. Maybe they just didn't think about it, accepted it as part of their job, and eventually came to be a little passionate about its rightness. After all, no one was trying to change their bodies.

When I say this happened once I mean that people in power make this decision about people with autism on a regular basis. Probably as you are reading this a person is deciding to be this way, and their decision will spread because it doesn't occur to many people to question it.

To some extent this is true about any decision within that dynamic. Let's say someone decided that all kids with a certain disability have to play soccer, or read Tarot cards. I think this would actually catch on to a greater degree than you would expect. But indistinguishability is such a historically popular thing for people in power to choose to force on disabled people that it has a kind of momentum. You just think about it and it's already there.

Every person in power who unthinkingly chooses or supports indistinguishability is adding to its mass. It's an army of laziness, an army (usually) of feeling safe in your body. Of being able to talk about how much you love The Office in between sessions of training a kid with autism not to make jokes that don't have an obvious punchline. It's easy to do pretty much anything to people with disabilities but indistinguishability has an army.

The pressure of the army makes room for more soldiers. Obviously. This has all been an excuse for a pun. The way indistinguishability got its groove back is that indistinguishability actually is a groove being worn into the fabric of society by sheer constance and bullheadedness. Have a nice day.

stuff to say in class

(I used to be joking when I said that and now I'm not, which is an exciting change.)

of course more of an effort needs to be made to include girls with ASD in studies at an equal rate to boys and study differences in presentation and even do all-girls studies

however, I think this is not just because we need to study what ASD is like in girls, but because we need to question commonly accepted values about how to "treat" children with ASD.

the focus is generally not just on communication and other objective skills, but on normalization of behavior, but not a ton of analysis is done on why for example preventing neologisms, preventing stimming, and training eye contact are supposed to be inherently good. But when we think about the fact that (anecdotal but very consistent evidence from professionals, parents, and people with ASD) women and girls with ASD are much more likely to pass for non-disabled, or at least be less apparently/stereotypically ASD than their male counterparts...we actually already have a bunch of passing/semi-passing ASD people to study. We can actually look at these people and see what their quality of life is.

Again from anecdotal but consistent evidence, women with ASD are more likely than men with ASD to have severe anxiety problems. I think at least one study showed that we are less likely to be married. And when you actually think about this stuff logically and not from the standard "non-disabled people>>>>everyone else forever" perspective, it makes perfect sense. Behavior is not who you really are. Focusing super hard on behaving like someone else can cause anxiety and exhaustion. Being impaired and having other people not notice that/make allowances for it, because you pass so well, can also suck. If you are behaving like someone else, you may number one fall into the uncanny valley, and number two be unable to feel things very deeply/experience real connection.

I mean, to me this is common sense and people should already be questioning "non-disabled people>>>>everyone else forever," but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.

Tangerine

When I was a kid I remember encountering fantasy books that took place in societies where people with blond hair and pale skin were considered to be unattractive. Early on, before the character development, the blond main character would be beating him- or herself up for being so "ugly" and "freakish." I enjoyed those books at the time, but in retrospect it strikes me as cheating because the reader gets to enjoy the angst of having the main character think that they're ugly, but doesn't actually have to identify with a character who has dark skin or dark hair, the traits that are considered undesirable in real life.

I just finished reading Tangerine by Edward Bloor, a young adult book that does the same thing with disability. The main character, Paul, is said to be "legally blind" but the implication is that this either hasn't been true since he was a kid, or that it doesn't really affect him that much. People react negatively to Paul's label of disability, and his glasses (which are apparently unusual-looking), but there are no instances in the whole book of Paul not being able to do something, or needing help, because of his vision. He describes things he sees which are quite far away (for example, birds flying and fields that he sees out the car window). His disability seems to exist in name only.

I've had this book since I was 14, because I bought it and never read it. I finally decided to take it to camp so it would stop crowding up my bookcase, and when I opened it to a random page I was surprised to see the word "IEP." It turns out that Paul's IEP is an important plot point--which is interesting, right? When I had an IEP I didn't know I had one, so I don't know whether IEPs are portrayed accurately in the book. They are portrayed as something that sucks.

The implication is that Paul has never had an IEP when he moves to Florida at the beginning of the book. (He's about thirteen or fourteen years old and has been visually impaired since he was five.) His mom mentions to his new principal that Paul is legally blind, and is told to fill out an IEP. Then Paul is given a guide at school, who he blows off saying "I can see fine," and is prevented from playing soccer because it would be bad for the insurance to have a legally blind kid on the team. Paul loves soccer and is really good at it, so he flips out and takes extreme action so that he can transfer to a different school and intentionally keep them from realizing he's disabled. The rest of the plot comes out of Paul's experiences playing soccer at at his new school where most of the students are poor and nonwhite (Paul is rich and white).

Throughout the book, the implication that Paul is impaired in any way is portrayed as laughable. In the narration, Paul keeps commenting that he hopes no authority figures from his old school see him and exclaim, "That kid's handicapped! He needs an IEP!" (Handicapped is the word the soccer coach used when explaining Paul couldn't be on the team; Paul never calls himself handicapped, disabled, blind, etc., but instead refers to "my glasses" as the thing that sets him apart.)

Paul's label of disability is used against him by his family as well as the school. It is obvious from the beginning of the book that Paul's brother has problems with violence and crime, but that their parents play favorites and ignore those problems. When Paul points out things that would reveal what's going on with his brother, his parents remind him that he can't see very well and probably misunderstood. I feel like this would be cool if Paul actually was impaired in any real way--I just read The Girl With the Dragon Tattoo, and I think Larssen does a fantastic job portraying Lisbeth as someone who is unfairly labeled and discriminated against due to her disability, without implying that her disability isn't real. But in Tangerine, disability is just an idea that you use to hurt someone, there's no real disability.

(I also feel like when you spend a lot of time saying "but I'm not really disabled! That's hilarious that you would say I'm disabled!" you start feeding the specter of those Really Disabled People who exist somewhere, who it would be so terrible/outlandish to be associated with.)

There are a few instances in the book that seem to imply a more positive identification with disability--or some kind of identification, anyway. Paul thinks of himself as a circus freak because his brother tells people that Paul became blind from looking at an eclipse straight on. (No prizes for guessing how Paul actually became blind.) Paul says that he doesn't mind being a racial minority at his new school because "my glasses" make him feel like a minority anyway--which is obviously problematic but does imply that disabled people are a minority group.

The most striking instance is when one of Paul's new friends is talking about his (the friend's) brother, Luis. Paul's friend talks about the knee injury Luis got as a kid, his ambitions, and the fact that he played soccer in middle and high school. When Paul asks what position Luis played, the friend replies, "He played goalie [Paul's favorite position], because he was handicapped."

Paul has a strong reaction and imagines that his friend might be making fun of him by using the word "handicapped," but realizes that he isn't and marvels that his friend neutrally used the word. Luis is a heroic character whom Paul admires and learns from, and I don't know exactly why Bloor decided to make him disabled and a goalie. The commonality between Luis and Paul is never discussed again.

I like reading books written for kids (although it was embarrassing when my 14-year-old camper said, "Oh yeah Tangerine, I just read that book for school") and I like the style of this book and think it has an interesting plot. But I'm sort of frustrated that Bloor brought in things like Paul's IEP and his parents undermining him because of his disability label, without making Paul actually be impaired. I feel like it could be a book that would humanize a disabled character and show how he is discriminated against, without being an "issue book" about ableism. But Bloor just makes it a book about a non-disabled kid who's inexplicably treated like he's disabled.

PSA: I suck at everything

So, recently lurker commented and asked me to explain how autism benefits me. I've never claimed that ASD benefits me, so I'm wondering why someone would ask this. Maybe they're really asking something else. But first, a rundown!

I'm Not Special, You Guys

1. ACADEMICS! I'm not failing out of college (yet) and I have an average IQ. In terms of college I succeed in spite of ASD, not because of it; I have to fight myself every step of the way to keep my head above water. And, if you were wondering, I don't do extremely well. I guess my IQ is an ASD IQ since there is a 20-to-40-point gap between my verbal and performance IQs? But it's not really an "aptitude" since it's a pretty normal IQ.

2. WRITING AND MUSIC! Admittedly I am a good singer and I'm good at writing music and prose. Part of the singing (not being tone-deaf and having a nice color) is just like being white or having long fingers. But obviously I've developed a style and I am precise and this is from intense interest and practice. My writing ability is from intensity too.

I think you could make an argument that these things come from ASD, since people with ASD are more likely to get deeply absorbed in things. I'm sort of reluctant to concede this because many people who don't have ASD can become deeply absorbed in things as well. I certainly wasn't born with writing ability the way I was born stimmy, or something like that.

3. FEELINGS! Even though I don't write because I have ASD, I do experience a pull towards writing that is like the pull I feel towards counting change. I'd characterize that feeling, and the satisfaction in putting things cleanly together and moving through them again (reading or playing) as an ASD feeling. This doesn't objectively benefit me at all and probably makes me write slower and linger over things that are done. However, I enjoy it a lot.

Something else subjective: I usually don't refer to myself as having synesthesia since that seems to imply something more hardcore than what I experience. But color hits me hard emotionally, and sound is accessible as visual information (not bright colors; the important thing is the shade, pattern, and edges), sometimes to an overpowering and shiveringly beautiful degree. This, and a certain stiffness and shakiness that comes out of prayer and a few other things, is my primary relationship to God. This strikes me as a DD, if not specifically ASD, sensitivity, and it's one I'm very grateful for.

Post-Rundown

Even though I love shivering and colors a lot, I don't really think they can be related to my "functioning level" or be related to whether anyone is mildly or severely affected. They are just feelings and they don't help me look after myself or produce anything. And they are the only part of my ASD that I think is good. This has always been the case. I have never made a post claiming that ASD "benefits" me.

Therefore, I don't really understand why lurker would come on here and ask me how ASD benefits me. It's kind of like if someone came up to me and asked how I liked living on Mars. I don't know what to say because the question appears to be directed at someone who is not me.

Obviously I cannot explain his reasons and maybe he will be willing to do so, but I have a theory of my own. Several months ago I wrote a post called ASD Savants/Disability Redemption in which I suggested that ASD people are expected to prove ourselves really skilled at something (and/or "not really disabled") in order to be viewed as valuable human beings. Maybe if someone has been exposed to a lot of disability-redemption rhetoric, they are so used to the equation skill=valuable=life is worth living that as soon as they hear someone with ASD claiming life is worth living, they just fill in the skill part automatically and imagine it's there.

Well, okay, public statement: ASD doesn't provide me with any skills. And...I really love being alive.

tl;dr: a baby triumph

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

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

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

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

My Amateur Prediction of What Will Happen

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

Enter two people who I really, really love.

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

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

Ari: You should talk to someone about that.

Amanda: I can't do that.

Ari: But

Amanda: NO

Ari: But

Amanda: NO

(change of subject)

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

In this case the conversation went like this:

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

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

Amanda: How is that an accommodation?

Ari: It reduces your anxiety.

Amanda: I don't have anxiety.

Ari: Are you serious?

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

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

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

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

And he said, "Yes."

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

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

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

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

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

"For you or for me?"

"I mean, for you?"

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

Chicago Style is Oppressing Me

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

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

I support Ari Ne'eman, part two

Hi.

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.

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.

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.)

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

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)

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.

Unnecessary things

Dave Hingsburger made a really good post about how he wanted a book that he couldn't reach from his wheelchair, and the bookstore employee got annoyed because he was picky about which edition of the book he wanted her to reach for him. I feel like it's good not to feel that you only deserve things that are necessary. Especially because it's hard to tell what's necessary.

I have ASD. I also probably have some not-worth-diagnosing condition that makes me feel faint and on a few occasions has led to me losing the ability to see. I guess this is called "chronic low blood pressure" or something. This summer, my vision almost completely took its leave of me while I was in line at a grocery store. I felt confident explaining to the people around me that I had to leave my food on the counter, go outside, and sit down. (It didn't hurt that on my way outside I tried to walk through a glass door.)

Mostly this doesn't affect me, because I leave situations where I am getting faint, or avoid getting into them in the first place. ASD doesn't always affect me badly either. But the other day, at work, I was told to do a different job than the one I had been hired to do, one which was very taxing for me in terms of sensory issues and Feeling Faint. Although I've never thought about Feeling Faint, or thought much about ASD, when applying for part-time jobs in the dining hall, it would never have occurred to me to apply to do this other job. It's not something I have a word for, I just find several aspects of it to be very difficult over long periods of time.

Anyway, I didn't lose any vision while I was working there, and my Feeling Faint is not really a severe or chronic enough problem for me to be able to explain. I doubt the Disability Services office or anyone would advocate for my right to have a job that isn't upsetting to me for sensory reasons. However, I'll be very upset if I'm pressured into doing that job again, and I will make an effort to insist that I be allowed to do the job I was hired to do.

The problem is that it isn't a necessity for me to avoid anything that might be difficult for me on a sensory level, or a Feeling Faint level. So I don't feel that I deserve respect and help, objectively, the way I did when my vision went out. But the truth is that if I'm forced to remain in a difficult situation for hours, it is really bad--so in the long run, I think it becomes a necessity that my impairments be acknowledged and accommodated.

Also, I don't think it's even going far enough to just admit that some apparently unnecessary things can actually be necessary or become necessary. What about things that aren't necessary like Dave Hingsburger's book? Nothing horrible will happen to him if he has to have an ugly cover instead of the cover he likes--but shouldn't disabled people be able to ask for help that will give us the same range of opportunities as a nondisabled person?

To continue pelting you with examples, I'm afraid to meet with professors when I'm having trouble in class, because I'm concerned that my communication and body language might cause them to resent me and give me a worse grade. Not meeting with professors isn't a huge deal; I always get by. But if I could meet with professors, I could do better. If I was as smart as I am, but didn't have ASD, I could do better in school. I'm going to try to meet with professors and advocate for myself if they make up stories about who I am. I deserve to do as well in school as a regular person can.

Infiltrate

This scene makes me think of my fifth-grade teacher:



I don't have much to say, just this. I am in a disability studies class; I don't know what I think so far. The professor has never taught a disability studies class before and I think we're supposed to figure out for ourselves what we want to write a paper on.

I want to write a paper on infiltration. I don't like for people to talk to me in a way that makes me feel like that picture. And I can't do it to someone else, which in some people's minds makes me bad at ABA. I am quiet when I talk to people who are upset. I don't grab them by the shoulders and force them to walk in a less stimmy line. I want to infiltrate services for developmentally disabled people so that for the minutes or hours or days a person is with me, no one makes them feel like that. It's not everything but it's something and it could change something in them.

I'm afraid to talk. A lot of the time if you work with ASD kids, being normal is a qualification. It's obvious in the way they talk--you want to bring in normal kids to show the ASD kids what normal is like. You want to model normal ways of sitting and interacting. By definition, I'm not qualified for a lot of the jobs I want to do. Because it's all about us vs. them. I want to write a paper on us vs. them. Because I can't ever be us, the most I can be is a really good them who everyone looks at as a success story because I try really hard. But do I want to try hard? And do I want to "emerge" from them, so I can yell in their faces too? Not hardly.

Time is scary?

It's sort of hard to explain what I mean, but I think that a lot of my difficulty in Doing Stuff comes out of a fear of becoming so absorbed that I lose self-awareness or awareness of time. Of course this fear is not without merit.

It makes me nervous to watch a movie. This is funny because I watch so much TV, and in marathons. But I usually watch TV on my computer, so I know exactly when it will end. Also, TV shows are usually pretty much the same length--about 20 minutes, about 30 minutes, about 40 minutes, or about 60 minutes, depending whether they're on pay television or not. Watching a 72-minute movie is actually scarier than watching 2 episodes of Mad Men, which takes 80 minutes. My dad got annoyed at me last year because we were watching a movie and about halfway through I picked up my computer and started doing my Internet things (you know, email, livejournal, etc.). He said that if I didn't want to watch the movie we should stop and finish it later. But it wasn't like that, exactly. I needed the computer to ground myself in time.

I suffer from an urge to multitask when I am doing something that might remove me from time. I used to just think it was a sensory thing, and I still think that might be part of it. It's very important for me to have something to eat at movies and even at plays (for some reason plays aren't quite as intimidating to me as movies in the theater). I also tend to feel that I should have something to eat while I'm doing work. This probably accounts for certain things being my favorite foods and not others (a particular rhyming concoction comes to mind). I like foods that last a long time and are easy to eat while doing something else.

What is work? Work is whatever a body is forced to do. Okay, not really. Work is whatever my body thinks it's being forced to do. For example, since I was a kid I have wanted to be a fiction writer, so my body thinks it's being forced to write fiction, so I don't write fiction very much because it makes me nervous, and I have an idea that I need to set myself up with a big supply of food in a comfortable place or I won't be able to write fiction. The only reason this blog exists is because I started writing in it as a way to procrastinate. If I ever get too excited about this blog (whereas now, I just look on it with a huge amount of affection because it is the most calming place to waste my time, but it's not entirely unproductive because some people read it and sometimes I'm writing about important things), I'll probably start writing a lot more fiction.

I produce a ton of music because music doesn't feel like work yet.

Latin is work.

But anyway, back to the losing time thing. When I was six I entered kindergarten and turned into a monster. Everyone thought that I had probably been molested because I sat curled up in a corner reading the same books over and over, and hit anyone who tried to make me do schoolwork. (I went to a Montessori school so I was able to get away with this for an astonishingly long time.) Clearly I was lost. The first time I recall noticing myself being lost was when I was reading a Narnia book in the bathroom and I looked up and saw that the sun was setting. I was existentially heartbroken and terrified and came crying to my dad, "I read in the bathroom until sunset!"

I guess this is possibly why I don't read books; maybe they make me feel scared in the same way. Anyway, the reason I started thinking about this is that it's winter term, which means I'm supposed to be working on a project I made up myself, on my own. My project is reading De Caelo et Ejus Mirabilibus et De Inferno by Emanuel Swedenborg. It seems like a really cool book but in the four days that I've had it, I've only read two pages. This is embarrassing. Today--as I had been planning to do every day since I got the book--I finally trundled myself off to the library where I sat in the empty and unlooked after library cafe in the booth next to the vending machines. I bought some M&Ms to be my multitask. But I ate the M&Ms while writing in my notebook about how I like ASD culture better than queer culture. I thought about some more snacks and drinks that I could buy from the machines, but decided for the time being to just start reading the book.

I read. And read some more. I read twice as many pages as I read in the first four days, in two hours. I kept thinking I should stop. Or, I kept thinking I should want to go on one of the library computers and check my email, or that I should want to buy some Doritos. But I didn't want to that much. I just kept reading. I kept feeling vaguely anxious about what I was doing. I kept feeling like I shouldn't be liking it, because it was work; how could I stand it, without something to guide me through it, like a bowl of cheese and peas? Or an episode of Firefly going in the background, like I used when I was interning at the school and had to keep myself in time while I was getting dressed and making breakfast? But after a while, under the anxiety, I realized how happy I was and how much I was enjoying myself.

I don't know what to make of any of this. I love trains. My ideal life would be one where I had to commute to a job, maybe an hour each way, on a really comfortable train, like a Metro North. I love trains because when you're on a train you're stuck inside someone else's schedule and you can't get lost. Trains are the easiest places to write and read.

College Accessibility for ASD People

When it comes to ASD, the medical model is woefully inadequate.* According to the medical model, some really specific thing (like extra time on a test, or magnifying or screen-reading software) can make the person learn just as well as other students. Even if the professor doesn't believe the student's disability is real, doesn't like the student in particular, or doesn't believe disabled people should be going to college, they can be forced to allow the accommodation. And all is well! Well, not really, if the professor is an asshole, but that's the theory.

But with ASD there is not something you can ask for like this. The professor has to be okay. If the professor dislikes or disrespects a person because the person moves or talks in a nonstandard way, the person is fucked. In my first term of college I had a professor who really disliked me and formed opinions about what I was like because of my way of speaking and talking. I wasn't blameless--I accidentally came late to the first class, and forgot to turn in an assignment (which I had completed; I just forgot to turn it in)--but my professor took my mistakes and combined them with my ASD presentation to create a narrative where I was lazy and didn't care about the class, even though my other actions showed that I did care. He was openly contemptuous to a degree that made me cry, but because I hadn't been a perfect student, I felt like there was nothing I could do. I felt I had to drop the class; this would mean I'd have less than the required amount of credits, but I was too anxious to do the work.

But fortunately, my professor referred to me as "really weird" when he was talking to another student, and she told me what he said. After talking to the head of disability services (more for emotional support than anything else), I confronted my professor. By stating outright that I knew he didn't like me and had insulted me to another student, I was basically able to force him into being nice to me for the rest of the term. He claimed I was imagining his dislike of me and the other student was lying; but I wasn't looking for an apology, just a less terrifying professor.

Hooray! But most professors are not dumb enough to insult a student to another student, so most ASD people in this situation wouldn't have such measurable proof of malice. Also, it was really lucky that he happened to say this to someone I was friendly with. ASD students are probably less likely to be friendly with their classmates, so they'd be less likely to be told that their teacher insulted them. And they'd be less likely to ask their classmates for their opinions on whether the teacher is acting inappropriately. I am super lucky that I didn't have to drop the class.

An ASD student really, really needs professors who can interact with a person who acts different without having a total overreaction. I would say that my school is really accessible to me because (except for that one glaring exception, who has fortunately now retired) most professors don't overreact to my difference.

(*Of course, the medical model is actually woefully inadequate for other disabled students as well. I previously mentioned how my friend was patronized by a professor because he has cerebral palsy. The disability services office can provide him with a notetaker, but not a professor who understands that slurred speech isn't indicative of low intelligence or immaturity.)

this is a good example of why I suck at college

Dear [Latin professor who is my advisor],

As you might remember (or maybe not; it was a while ago) you agreed to be my Winter Term sponsor. I'm going to read some Latin from late antiquity or preferably the middle ages. Since I've been abroad I didn't need to sign up for a project in the fall; I'm supposed to do it when I get back to Oberlin, which is the day after tomorrow. However I feel anxious because I haven't decided what I want to read yet. [Medieval Lit professor] was going to help me decide but I feel bad dragging two professors into my anxiety so I thought I would ask you first since unfortunately for you you are already involved.

if all else fails I might just read Augustine (or possibly Tertullian), but that's a bit early for me. I really would like to read something that's personal and religious, like someone's account of their visions/spiritual experiences, and things like that. I really love people like Margery Kempe and Julian of Norwich, but I think that because of the nature of that kind of writing it isn't very likely to be in Latin. Is there stuff like that in Latin?

apologies and happy holidays (and I totally understand if my query is too weird/nebulous to answer easily; I am looking for stuff on my own too, but figured it couldn't hurt to ask),

Amanda

[Normally I freak out more about this kind of thing and try to go over it a lot trying to sound more normal and/or I just don't send it at all, but on this occasion I was just like whatever. I don't know. I was noodling around on Wikipedia and I found out about this guy Emanuel Swedenborg who wrote books in the 18th century in Latin about his visions and revelations about God and the afterlife. Apparently Yeats and lots of other people I love were into him. So I'm thinking I might ditch the medieval thing and read one of his books instead.]

OF COURSE I UNDERSTAND THE IMPORTANCE OF PASSING

Today my dad brought me to meet his friend who is on the board of a Down Syndrome organization and a music school for people with developmental disabilities (mostly Williams, I am sort of obsessed with Williams thanks to my crush on Jeremy Vest from How's Your News). It was really great to talk to her about disability stuff, and as with most things that are great there's not much to say about our conversation.

However, one thing kind of struck me (not really her fault, but it just struck me and made me think about a particular DD strawman). Basically I was talking about my experience at The School and how alienating it was for me as a person with ASD to see kids being corrected for stimming, talking weird, etc. I wasn't censoring myself because she mostly works with intellectual disability stuff, and that culture is much more comfortable with people looking and acting weird. (I think this is tied in with the whole privileging of ASD among developmental disabilities, and is an interesting example of how having higher status can make things worse for you in some regards; but I have a thousand words to say about that topic, so I'll save it for another post.) My frustrated spiel about The School kind of built and culminated in, "So, the thing is I'm interested in ABA, but if I'm applying to work at a school, how am I supposed to tell if they stop kids from flapping their hands or if they care about things that are actually important?"

My dad laughed. "Well, you certainly have an opinion," said my dad's friend.

She didn't seem offended or anything. But then she started telling me how they work on teaching the students at the music school to behave in a socially acceptable way. She said for example that when they have jam sessions at school, it's okay for the students to clap their hands and cheer for each other in the middle of performances; but when they go and play in other venues, they're not supposed to do that. The school tries to train DD people for careers in music and that kind of behavior will get in their way.

This seemed legit, but I didn't know how to process it as a response to what I had been saying about The School. Finally, I said, "Well, I feel like there's a difference between teaching someone to self-monitor, and just saying, 'You're not allowed to do this thing that you like to do,' because that just makes them dependent," and she said "exactly, self-monitoring is really important."

Right.

When I was at The School, I helped organize this directory of New York autism resources that they were hoping to give out to parents. When I printed out the final document (as Danny would say), I put an image on the title page, something I had found on Google which represents a computer term I don't understand:



When I look at this picture, it makes me incredibly emotional. It's so beautiful and that's just what I want for Danny and myself and other people with DDs. This picture makes me think of a time this summer when I got really lost in the subway system at night and I ended up having to ride all the way out to the Brooklyn Bridge and then come back. (I live in Connecticut so I was trying to get to Grand Central or 125th Street so I could go home). My phone was dead so I couldn't call my mom, and every stranger who attempted to give me advice made things worse, so I stopped asking and just gave up and decided to do things the longest way possible.

So I'm waiting for the train to take me back to Grand Central, and it's been a really hot day and I haven't had much water and in addition to screwing up my processing and getting me lost in the first place, this is causing me to have a headache. And I'm just standing on the platform at eleven or twelve. And I start moving my hand down by my side, back and forth, hard, really swinging it around. And the pain in my head goes away.

And I am thinking of Danny of course, because I saw him today; and I've been thinking how Danny will never get lost in the subway system because he knows it all. But also, as the pain stops, something I've only learned recently, that it really is okay to move my hands sometimes, and that it helps me a lot--I just think, shit, I hope that Danny figures out that it really is okay to move his hands, no matter what they tell him.

I don't have time to finish writing this and it's kind of fucking me up but basically the thing is, I'm a passing person with a DD so it just doesn't make sense to imagine that I don't understand the value of learning socially acceptable behavior and that I think it's a cool idea to encourage DD people to go around vocalizing and rocking back and forth in job interviews or at the movies. If/when I have a kid with a DD, I will of course advise my kid on what is prudent behavior.

But telling someone not do things that are good and/or fun for them, things they usually end up sometimes doing anyway, is just sort of ridiculous! And mean. And impractical. And if you have a school that is built on the principle that completely ordinary but odd-looking things are a Big Problem, then I have to imagine that you just don't think about developmental disabilities in a very practical way, and I have no idea what you would make of a person like me.

Manners

I just finished my Latin exam. Having done the math, I think it's pretty likely that I just scraped by. Literally, like I got one point above failing. Does this matter? Not at all.

It's time for another edition of Kartheiser is Magic, but in this case, it's a segue into an actual disability-related topic! Hooray!

[In response to the statement that he seems younger in real life than he does on the show] "I actually have been through a lot more in my life than Pete has. I think Pete is less of a man than me. The difference in the visual is that Pete had a finishing-school upbringing. I'm an actor, so part of my job is looking like a bum. So I think manners and age are being confused here."

YES VINCENT KARTHEISER! THANKS FOR BEING SO FUCKING COOL ALL THE TIME! Manners are not age. And the fact that people think they are smacks me in the face about a million times a day.

I sometimes have very Pollyanna-ish reactions to things. This is both because of ordinary ASD sensitivity to details, and because of the nature of my scripting. As I think I've previously said, it used to be very hard for me to do things like buy candy bars, ask for directions, or, well, anything. I felt overwhelmed by the task because I knew that as well as the stated task there were lots of other secret implied tasks about my tone of voice and the way my face should be looking. (If you think this isn't true, you're just stupid. Go to a sandwich shop and use nonstandard tone and body language and have trouble processing and making decisions while you are ordering your sandwich. The people at the sandwich stop will be super happy to point out, verbally or with body language, everything that's wrong with what you're doing. Or, if you have a very serious, tense expression on your face because you're trying to make decisions fast to not inconvenience them, they'll ask if you're okay.)

Anyway, everything was such a big challenge that it was hard to do anything, so I figured out the solution of acting really excited and optimistic and young and innocent. This is a very simple persona that lends itself to easy scripting. When you are buying a candy bar you just think to yourself how excited you are about the candy bar and focus on expressing that. When you are asking for directions you try to be cute and make a joke out of how young you are. Suddenly, in the space of like a year, the amount of things I was able to do increased a huge amount.

Previously, I had found it very hard to talk in class or ask teachers for help because I didn't know how to talk or look. Now, I approached teachers with a persona of being young and adorably baffled--a persona that was partly sincere, but could also be used to humorous effect if the teacher was the joking kind. I had an easier time talking in class because if I had trouble understanding something, or if I was expressing a lot of ideas and my script broke or wasn't properly set up, I could giggle and make a joke out of it. Once I started scripting, my grades, and my comfort with my teachers and classmates, improved enormously.

I am a bit more academically impaired at Oberlin than I was in high school. Even though Oberlin is a very small and laid-back school, it is not comparable to my high school which had 50 kids in a grade and had a high population of students with learning disabilities. Besides, there's just the fact that for most of the time I was in high school, I was legally a child, and even after my eighteenth birthday I might as well have been. It seemed more natural for my teachers to have a motherly or fatherly relationship to me. In college, I am expected to some extent to behave like an adult, and if I come to a professor's office hours acting ditzy and young, they might think I am annoying, unmotivated, or manipulative. So at Oberlin, I have to be doing pretty badly to go see a professor, unless they have a very casual, accepting attitude (like most of the classics professors). The only professor I am actually close to in an admissions brochure sort of way, like I've been to her house, used to forget to come to class sometimes--so she's someone I can feel completely safe with. All in all, I still do a lot better than was expected of me.

Sometimes people say that I am immature or use words like "crazy," "insane," "annoying," and "obnoxious" to describe the way I am. Also, when they notice that I am apologizing a lot or putting a lot of concentration into figuring out how to do something right, they tell me not to be so nervous, to have more confidence, or not to be so insecure. All these words imply that I am an unfinished person. Either I am unpleasant or annoying, and I should improve myself so I won't bother people, or I am incomplete on a deeper level--inappropriately anxious and self-hating. If I stop being a person who can be described with all these words, then I will be an adult.

While I have been in the UK, I have not made very much use of the Pollyanna persona. I feel that I don't know the culture well enough to know if it will be appropriate or if it will be annoying. When I am buying things, I mostly make use of something I taught myself to do at Cleveland Hopkins International Airport, where people are always staring at my hair:



If there is any downtime while I'm waiting for my sandwich to be made or my groceries to be rung up, I simply mentally remove myself from the situation and try to stim out on some band posters or ceiling lights. That way no one thinks about me at all. The only problem is when the other person tries to be friendly. Niyatee was trying to explain to me that when the lady at the burrito store guesses what kind of burrito I'm going to order, she isn't trying to a)mess up my script and b)make me feel guilty about my repetitive eating habits. I still feel scared about going to the burrito store, though.

I don't ask my professors for help because it might be annoying and as a result I got very behind in two of my classes and will be very close to failing them if I don't fail completely.

I haven't struck anyone as crazy, obnoxious, immature, adorable, otherworldly, or any of the other things I am called, because I barely talk to people at all and when I do I am nervous and blank. I say what I'm required to say and then feel it wasn't good enough.

It is hard for me to go anywhere or do anything because I don't feel I have a system for how.

When I go home, when I pick up a lot of jangly exclamations and interrupt myself in the middle of my sentences, when I raise my hand and preface my question with, "I know this is really stupid, and maybe I shouldn't even be in this class if I don't know this, but," when I stick out my hand towards people to say hello to them, when I skid around and call everyone "kids" and act incredibly delighted about yogurt-covered pretzels at the student cafe, when I eat snow and lie down on the floor because I have kyphosis and accidentally start stimmily running across campus because I feel hopeful and happy coming out of my ExCo on a cold starry night, I will be a person who is accomplished and capable in a lot of ways. I will be more of an adult when I am a quirkfest than I am now that I am paralyzed by a desire to be unseen. To be inoffensive. I feel calcified here, but with worse manners I can really make something of myself.

The End

I'm going home in 10 days. Before that I have two exams and a paper and I'm not very prepared. I've been doing almost nothing because I've been sick (or I've been using being sick as an excuse; I don't know that it really affects my ability to do anything, except on the first day when my hands hurt and I was really sensitive to water and cold).

I feel worried. It's funny because even though I frequently feel like an underachiever at home, I am capable of pulling all-nighters and stuff, but here I feel like I've forgotten to do work altogether. It doesn't really matter, I guess, since I just need to pass to get credit at Oberlin, and it's incredibly easy to pass here. But I'm worried that I've fundamentally destroyed an ability in myself. I hope things get better.

Here's what I think about me and school: I like systems and closed spaces. This is why I love riding trains because I feel contained. In the UK, at least at the University of Edinburgh, I feel like I'm floating around in a void. No one knows whether I do any work or not. In the US, you have to take tests and write papers all the time, and your teachers might call on you in class. Here, no one can tell if you're doing any work, and then they judge you on one paper and one exam that suddenly appear in the middle of the endless days of coming to class and spacing out because no one seems to care.

I'm not proud of the fact that I don't do work unless someone notices whether I do it or not. I know that makes me sound like I'm not a person who has a passion for learning, or anything. But, if you can believe it, when I'm being forced to learn I love learning. When I think about last year, about how much I was incredibly interested in all my classes and thought about them all the time--I mean, I am lazy, but I'm not apathetic, I just have a really hard time making decisions and planning and getting down to business.

I think a lot of the reason I have lost interest in Latin gradually since high school is that in high school we had to turn in a translation and my tenth and eleventh-grade teacher always praised my translations. I put effort into translating things not just correctly, but in a way that sounded good. Both at Oberlin and at Edinburgh, you have to write a translation on the test, and at Oberlin you have to translate in class, but it's about reading, not writing. I miss being able to create something. I'm supposed to be doing a medieval Latin project for winter term, and I'm thinking of asking my adviser if the focus of my project could be producing a translation, instead of just reading.