If you don't know who I am

When I graduated from Oberlin in 2011, I had an idea to make a post called "Is Oberlin a good college for students with mental disabilities?" so that prospective students with mental disabilities could get an impression of what it was like. I didn't get around to it in the first two years after college, and I already feel like it's been long enough that I can't really act like an expert on Oberlin. For one thing, there's a nonspeaking Autistic guy going there now and his presence may have changed things.

I do want to talk about a particular phenomenon though and I think it might be something to think about when it comes to any college that has a reputation like Oberlin's. It's from a comment I saw on Oberlin Confessional or ObieTalk, which were anonymous forums where students gossiped, trolled, and tried to find people to have sex with. Some of the discussions were more cerebral than others and this time, people were talking about whether Oberlin was as tolerant as people thought it was.

The comment was something like, "Most people at Oberlin don't understand my experiences or my background, and don't seem motivated to learn. They say they accept everyone, but you can't accept me if you don't know who I am."

It was better written than this and it really struck me. It also reminded me of some of my own experiences as an Autistic student.

I'm not afraid to say that the director of disability services at Oberlin was unhelpful to me. I've heard she did a lot of good things for mobility impaired students, but when it came to me she wasn't very willing to help me and often implied that my disability wasn't real. One time when she was telling me why she had taken away my priority registration, I mentioned that I was going to be a classics major and she said like I was proving her point, "Well the whole classics department practically has Asperger's, you'll be fine there!"

When I got a little older and was more political about things I started getting annoyed by the whole verbal-Autistic-person = geek stereotype, but even aside from the stereotype, there's this idea that as long as an environment is "geeky" or "awkward," it's automatically an accepting environment for Autistic people. We don't need accommodations, we just need geeks.

For me, being around "awkward" people is not that helpful. Sure I might have more to talk about with people who are really into pop culture and I might have a more similar sense of humor to people who identify as geeky or awkward. So on a superficial level, it's easier for me to be roommates with people like that or be seated next to people like that on a cross-country bus trip. Things will go smoothly, conversation-wise.

I'll even go further than that and say that sometimes, geeky or awkward environments can be more accepting places for people who are visibly different because of autism, mental health problems, or learning disabilities and they have often been more comfortable for me than environments that aren't oriented that way.

But:

1. In an academic setting, the teacher and other students being "awkward" doesn't have anything to do with whether the student will be accommodated for learning disabilities, auditory processing disabilities, anxiety, etc; or how the teacher will respond if the student is unable to complete work as fast as other students or in a standard way because of her disability. (This really depended--one thing about Oberlin is that the professors have a lot of freedom about how they do stuff so my professors were able to excuse things or let me do things differently if they wanted to. Obviously, some didn't want to.)

2. When it comes to forming close friendships or close relationships, whether someone is "awkward" doesn't have anything to do with whether they understand what it's like to have a disability and whether they have empathy and respect for someone who's not able to do the things they consider normal. I've had some friends I really got along with on a doing-stuff-together-and-talking-about-stuff level, but who I wouldn't be able to have a really deep friendship with because there are parts of my life that will be a problem or just incomprehensible to them.

3. In both settings, "awkwardness" doesn't prevent non-disabled people from using the r-word or saying fucked up things about Autistic people or disabled people in general, or non-disabled professors teaching Disability Studies classes to mostly non-disabled people without anyone ever acknowledging their privilege, or groups for disabled students never really getting off the ground, or disability not being included when people are talking about marginalized identities.

So that's pretty much what I have to say about Oberlin. And I actually really liked going to Oberlin! But there are limits to "awkwardness."

Annie

(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.

all it takes

Tonight in line at the dining hall I was having a conversation with someone I kind of know. He was strikingly knowledgeable about when, in the mind of the register at the dining hall, the "dinner" period becomes the "fourth meal" period. Many people aren't clear on this, and when I am cashiering people will sometimes try to swipe their card at 9:30 after eating dinner at 5:30, not understanding that it is still the dinner period and their card won't work again until 10:01 when fourth meal officially starts.

So I was like, "Wait did you cashier at some point?" and he said, "No, but when I was a freshman I lived in the dorm in this building so I was here a lot," and I was like, "Dude I know that, we lived on the same floor," and he said, "Oh sorry, I remember." But as soon as I thought about it, I felt much sorrier than he did.

This guy (whose real speech style I am not even attempting to replicate) has ASD and Tourette's. He is probably everyone's stereotype of a person with "Asperger's"--I mean, now I think the unusualness of his speech is what's most obvious, but when we were freshmen he would always monologue about engines--isn't that the most stereotypical thing you can think of? He'd draw pictures of machines and explain them to people, for heaven's sake!

The way I treated him was just...barf. I was always trying to tell him what to do and how to talk to other people. He didn't get mad at me for this, but he'd never asked me to do it. I just couldn't help thinking that I knew something he didn't. I knew the proper way to act if you had ASD. You were careful. You never talked about anything you were interested in. And look, look, some people were ignoring him when he talked! I was right. Why didn't he just pick up on what I was trying to teach him so he could make more friends?

Except, then he did make a lot of friends, and became really popular. I hardly ever see him alone. He's involved in lots of extracurricular activities. Most people don't guess that he has ASD because he doesn't fit into their idea of it; he's not ~isolated~ by his ~pathology~. He's just himself, and almost everyone likes him for it.

I haven't spent a lot of time with this guy since the first semester of our first year. But being in school with him, and seeing how things turned out, was one of the things that made my frame on social skills begin to change. He is fine. He did not need help becoming more like me as I was then, or more like anyone else.

What's so important is that all it takes is to see one or two really naturally, visibly nonstandard people in a state of really awesome social success.

You stop chewing on your tongue while the person is talking, thinking about what they should be like, what they probably just don't understand is the right way to be; you stop cringing for what's going to happen to them if they're not careful. You just see the person. You see that they're really cool. You see that you weren't treating them like an adult, before.

And then you think about all the environments where the way this person is would sentence them to isolation, bullying, unemployment, and other undesirable ends, because of their "bad social skills." And then you start to see how incredibly cruel and ridiculous those environments are, for being the way they are. And then you stop being careful. And you start being super pissed off.

the spirit of the staircase

is the word for really good things to say that you think of when it's slightly too late. Recently I had some in my child developmental disabilities class. I obviously need a tag for this class, but anyway.

The first one wasn't really a lack of something to say, I just spaced and didn't get to make an answer that would have been very easy. Basically the professor asked a question which assumed that no one in the class had autism. This is rude, since she knows I have autism, so I would have liked to respond gently and politely to the question, from my own personal experience.

The second one I just couldn't think fast enough though. We watched a movie about autism which was mainly parents and professionals, but at one point Temple Grandin appeared and spoke in the movie. I don't really like her, but anyway. After we watched the movie, my professor said something like, "Can you see how Temple Grandin's communication [or social skills or social reciprocity or something, I forget] is lacking?"

I said, "Well, we can't really tell from the movie, because we don't see her talking to anyone else, we just see her talking to the camera."

"Really?" my professor said, in an amused way. "You couldn't tell that she was different?"

My friend said, "Well, we know that she has an autism spectrum disorder, so it's hard to tell if we would know if we just saw her."

The professor said, "Speaking as a clinician, you can...well, everyone always laughs when I say this, but there's a certain smell--not a literal smell, but you can just tell when someone's autistic. Come on, let's talk about it. What is missing from Temple Grandin?"

But what I would have liked to say, when my professor said, "What, you couldn't tell that she was different?" would not have been mean or anything, but just low-key. I think that a lot of the time, just insisting on saying what you actually experience and think in an environment that is really marginalizing can be a pretty violent form of rebellion even if you are talking slowly and not being harsh to anyone. So, I would have said:

"Well, it's true that there's sort of a constellation of physical actions, like stimming and toe-walking and maybe including voice and facial expressions...well, it's like a type of body language that I click into really well and it feels really familiar. So that's how I can sense when someone else is disabled. But that doesn't really have to do with anything being 'missing' from Temple Grandin because I don't know enough about her life to know what she can't do."

And this part is for fun and isn't what I would have actually said, because it gets kind of shrill, but I'll just type it up for posterity (this is the spirit of a really long staircase):

"Besides, I don't really think of disabled people as missing anything and I feel weird about watching videos of an adult who seems satisfied with her life and trying to say what she's 'missing.' I mean, is that what you think about me when I'm talking? That's not how I feel about myself. As far as I know I'm the only person in this class with a significant disability--and by significant I don't necessarily mean severe, I just mean it affects my life at all times and in all places, and it's lifelong. So I mean I've always lived with it, and that's just not how I feel about disability. It doesn't make me uncomfortable and I don't think it's sad. When I see other disabled people I feel like, 'Oh cool, another disabled person'--I don't feel like something is missing. I love my friends with disabilities and I love the kids with disabilities I'm working with right now. They're swell people. [I don't really say swell as much as I'd like to.] Sure I can identify a lot of disabled people on sight because there are particular ways of moving that are more common for disabled people--but it's not because they don't have something that other people have, we just look different from them."

(As is usually the case, Amanda Baggs wrote a much better post about this sort of thing.)

the calmness checklist of a lot of people at my school

I don't want to call this "non-ASD privilege" or anything. There's already a checklist sort of like that. But I have been thinking and observing my particular situation, which is to say: grew up being stigmatized as disabled in my family, have always kind of known there is shit wrong that I have to manage (although I haven't thought about it as concretely as I do now), but have pretty much done the things that other kids with a lot of class privilege do when they are growing up. I haven't gone to a segregated school, I currently attend college, I don't see any reason to think that I will ever be in any kind of (good or bad) supported employment as people with more severe DD may be. And I don't think I will ever be in any danger of being forced to live in an institution, no matter what.

A little more than a year ago I made a YouTube video where I compared myself to a wheelchair user who when asked to describe her daily journey describes a series of places that any non-disabled person might go to. That is--the places she could go might be highly limited by which spaces are wheelchair accessible. A person can move through a bunch of places and situations that seem "normal" and are not identified as being for disabled people, but actually the person might be disabled and be quite affected in the number of options she has.

Although I think I have a ton of privilege just because I haven't always felt this trapped, I feel really trapped now (senior year). And I am surrounded by people who don't have disabilities and don't feel the same intense need to start planning their futures now for the sake of being safe. But on the surface we don't look all that different.

In fact I like my college partly because it is a very stoner/experimental/hipster/hippie/radical environment. I don't identify as any of those things, but the social environment is very comfortable for me because there's so much diversity of acceptable behavior. But this very social environment is something that really pisses me off right now. I mean, a lot of the people at my school who behave "unacceptably" do so because they think it's an interesting thing to do. They can quit any time and they don't have to structure their lives around it. Similarly, when they don't do things they are supposed to do, this is called relaxing and not worrying too much and giving themselves time. There are some things that I just can't do.

In my class where we work with kids and teenagers with DDs, we had some discussion about what a developmental delay is, and then what executive dysfunction/poor central coherence look like in people with ASD. This often degenerates into a good-humored discussion about how many people enter college and don't even know how to do their laundry, and how a bunch of guys still rely on their girlfriends to schedule everything for them, and how many friends of the person speaking don't even understand how to cook a meal. As a person who is really worried about the prospect of cooking meals and scheduling things for myself and completely wearing myself down to the bone because of how much emotional effort it takes, I don't think this is funny. And this article makes me spitting mad.

So, without further ado:

THE CALMNESS CHECKLIST OF A LOT OF PEOPLE AT MY SCHOOL
(this is very personal and kind of mean, and probably would not hold up in court)

1. I can ask for an extension without having to feel like a failure.
2. If I don't graduate on time, that's cool.
3. I can talk in class without feeling guilty for taking up people's time with my bad talking. I can even get off topic or say things that are totally stupid.
4. I can schedule meetings with my professors when I think I might be doing badly in class, because I don't worry that they will think I'm lazy or don't care about the class because of how I come off. I don't only schedule meetings in the event of being in danger of failing the class.
5. I can schedule meetings with professors just because I like them and want to become friendly with them, because I think that they'll like me too.

6. If someone expresses romantic interest in me, I don't worry how they will find out or if I should tell them.
7. If someone expresses romantic interest in me, I don't just end up avoiding them altogether because I don't want to deal with figuring out #6.
8. If someone expresses romantic interest in me, I can be pretty sure that it's not because they are academically interested in my lack of autism.

9. I'm never sitting in a class where everyone is ASD except me and someone says, "I'm really interested in not-Autistic-ness, it's so fascinating."
10. If I tell someone I'm not Autistic, they never immediately recommend that I read a book about a character who isn't Autistic written by an author who is Autistic.
11. I never have to try to figure out how to give feedback in a writing workshop to someone's story about how depressing, confusing, and annoying their sibling is because their sibling doesn't have autism.
12. Actually, I just never have to ever sit in any class where students or professors say anything about how much sympathy family members deserve for living with someone who doesn't have a disability.
13. But if someone ever did say something insulting or dehumanizing about people without disabilities, I could just say I was offended and explain why. I wouldn't have to feel like people would think I was overreacting. And I definitely wouldn't have to feel like people might be thinking, "Wow, I guess people without autism have trouble understanding other people's points of view." Or, "I guess people without autism don't understand humor." Or, "I guess people without autism have to take over the conversation and make it all about their own interests just because someone made a little comment about something related."

14. I can intentionally vomit on the steps of the library, and that's just how I am, not a sign of how I don't understand social norms.
15. I can also wear pants with holes in them and no underwear so people can see my junk (same person). Again, this isn't because I don't understand the appropriate way to dress, it's just a personal choice.
16. I can never shower and it's not because I have problems with personal care. I just don't feel like it.
17. Being out of it or overfocusing on weird things or dissociating is so fun that I actually pay people for substances that can make me do those things.
18. When I'm in a less accepting environment I can start showering and stop throwing up on the library and showing my junk to everyone and smoking so much weed, and get a regular job.

19. I don't have to worry when I am in class and the professor is sitting across from me and I'm afraid he will be making eye contact and expecting me to say something and I won't react fast enough or I won't make the right expressions.

20. When I'm at home I don't do my laundry and I don't feel bad about it. My mom doesn't tell me that I need to practice doing laundry or I won't be able to live on my own. I don't feel bad that my parents make my doctors' appointments because I'm still young and I don't have to prove that I am normal and independent.
21. When I mess up tasks like cooking, packing for trips, and cleaning my room, or get them done late, my mom doesn't tell me that I might never be able to live on my own successfully because of this.
22. My parents don't make me balance a checkbook when no one else does because I need to learn to be organized and responsible.
23. My mom doesn't cry about me when I am not feeling good. My mom doesn't cry and make me feel guilty about how she was upset by bad things that happened to me in the past. If I am feeling upset, I can just tell my parents without feeling guilty.
24. As a young teenager, I didn't wish I had a sibling so my parents could have a kid who would actually do things besides make them upset.

25. When I am interacting with service people, for example when I am eating at the dining hall, I don't worry about whether I am inconveniencing them. I don't pay much attention to what they expect from me (for example if they have a policy of checking inside take-out boxes, I will always wait to be asked by the cashier; I will never open my take-out box knowing it will be quicker to do that; and I will often bury my meal card deep in my pocket and stand there rooting in my pocket as the cashier waits and a line of people grows behind me). [a/n: yes I am the cashier in question :)] I don't worry about whether other people can understand my speech. After all, if other people can't understand what I'm saying, or are offended or inconvenienced by my behavior, it doesn't really reflect on me that much. I'm observant because I believe I am and I have good social skills because I believe I do and people should understand what I'm saying because I believe they can.

25. I might just move to any city I want if I feel like it. I am not worried about how I will get a job. Maybe my parents will send me money, that's cool. I'll figure something out.
26. It's easy to make friends. I know people will like me so I just talk to anyone. I just ramble to people about whatever I'm interested in.
27. I haven't had a paid job in a while. Wait, should I be worried about that? I'm really busy with schoolwork and friends and performance art. Of course I can get a job when I want one.
28. No matter how old I was the first time I got a paid job, I didn't feel ashamed that it had taken me so long to do what I believed a teenager was supposed to accomplish.
29. I can take time off from school if I want. I can go to grad school for fun.
30. Whatever I'm doing, I am okay.

Having written this, I've removed the word privilege. It's very scary for me to have to think about how hard it sometimes is for me to take care of myself and how much I have to plan for the future (always living with a friend, probably; I don't think living alone is safe for me). And it makes me angry how much I feel trained to think of myself as a burden.

However, I was talking to a friend my age who also is disabled and is class/financially privileged. And we ended up thinking it was maybe kind of good that we felt way too self-conscious about being disabled to just noodle around and not worry and be failures to launch. (On the other hand, watch all those people eventually launch and be way more successful than me because they're so confident in the knowledge that they're normal and people like them. Well, we'll see. I have a little time yet.)

Something I'm not going to say in workshop

This genre of story ("shit I've had to put up with thanks to my severely disabled sibling," as you put it) has a social context. You may just be writing how you feel, but my reaction is:

1. Does A. have the skills to write a story about the shit she's had to put up with thanks to you? About the things you will never do?

2. If A. needed help writing a story like that, do you think your family or the staff at school would be willing to help her? Do you think they would ever suggest that she write such a story?

3. If A. wrote a story like that, do you think people would read it and be sympathetic?

I'm pretty sure that the answer to all these questions is no. So I think that just writing how you feel isn't enough. I feel like if you're going to write something about A., you'd better make damn sure that you're being compassionate--really compassionate, compassionate to A. as an individual, not "she will never" compassionate which is not about A. at all.

You have a lot of power as someone who has the language skills to express yourself without help, and you have a lot of privilege as a person who is not disabled. With great power comes great responsibility.

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.

Wait you guys, things are sometimes beautiful

Because people my age are really fantastic at pointing out exactly how much everything sucks, but not how much everything is awesome, I haven't yet written about something that happened to me two weeks ago in my nonfiction workshop.

Basically, in a passive-aggressive move against a kid in my class who made what I took to be patronizing comments about the way I talk, and also just as a result of this totally unbearable pressure that's been building all term because I've been so overwhelmed by school, especially this particular class because so much speaking is required and because it's such a long class, and also because of various classes this term where I've gotten to listen to professors and classmates explaining autism, I started writing an essay about being disabled to be workshopped in class.

I was leery of talking too much about "the movement" because I thought that it would seem strange and radical to people who haven't been exposed to it. I also have very little interest in explaining what autism is or how it affects me. So I started the essay by talking about my psych professor's declaration that "autistic kids want people for what they can get from them, not for who they are," and my non-response. Then I talked about Joe and how I feel that people like Joe are cut off from other people not just because they are nonverbal but because of the huge amount of distancing and othering pity that is heaped on disabled and different people by society. Then I moved out to talking (vaguely) about my identification as disabled and my alignment with disability rights, basically explaining how I feel unable to talk about this stuff in real life, how I feel invisible, how I feel like a disabled person is never expected to be in the room when disabilities are being talked about.

The process of writing the essay was really upsetting for reasons I don't have time to describe and I ended up feeling that it had been a bad idea to put myself in the stressful position of trying to write something like that aimed at my classmates. That's when I wrote sometimes the best self-advocacy is shutting the fuck up and I resolved to bite my tongue through what I expected would be a really uncomfortable workshop and never work on this essay again.

However, the people in my class were incredibly kind and sensitive, by and large did not tell me that they wanted more explanations of autism, that I should think about severely disabled people's parents' feelings, that I should describe my childhood, that people with autism can't talk, or basically anything I was expecting. One kid said, "I think this essay proves your professor wrong." Another said, when asked to give negative feedback, "The speaker ends the essay on a negative note by claiming that she isn't accomplishing anything, but that isn't true--she works with kids and has a blog."

I'm mega late for eating dinner with my friend. But I'm just trying to say I feel extremely different in class now, and better about my essay, and also proud and glad about "disclosing," as LF would call it. This week in class quite a lot of things were wrong with me, and I don't know how I would have been able to stay above water sitting at a desk for three hours if I didn't now feel so safe with my classmates, more free about talking badly, and more able to do stimmy things.

(Also, soon after I told her that talking in workshops makes me really upset, my professor decided to change the form of our workshops so that instead of getting only one turn to talk and being required to talk and being expected to cover very specific things, we are still required to talk, but we get several chances to talk about a few different aspects of the piece being workshopped, and we don't have to talk every time. I don't think she made this change only because of me, but it has made my experience of class incredibly different and I'm much more able to participate well and feel comfortable.)

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.

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.

<33333

*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.

the blog schism

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

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

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

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

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

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.)

The lighter side!

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

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

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

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

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

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

That's Us vs. Them for you.

okay, this is what I sent

Dear [professor],

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

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

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

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

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

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

Sincerely,

Amanda

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)

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.]

The best conversation ever

So, I was walking to a cash machine and just before I reached the cash machine a guy passed me on the street, jerked his head back towards me, and called something that sounded congenial. I shrugged because I don't know anyone but maybe he thought that he knew me or else he liked my hair. I looked down and saw that the guy was wearing pinstriped trousers tucked into boots, causing him to sort of resemble a clown.

When I reached the cash machines there was someone at one of them and I started trying to engage the other one, taking a while to realize that it didn't work. The pinstriped guy was standing there. "How're you doing, babe?" said the guy, who was wearing not just pinstriped pants but an entire pinstriped suit, under an army jacket. He had pale skin and soft-looking dark hair. He was, in short, the kind of guy I would want to make out with if I wanted to make out with guys (although, by the end of the conversation I was ready to hand in my gold star).

I said I was okay. "Confusing, aren't they?" the guy said. "Cash machines. Money enslaves us all."

At this point I knew that I was supposed to parse him as someone who had a mental illness and/or had ingested a bunch of drugs, so I did some wallet-clutching as I tried to say something about how it's true that money isn't very good, but at the same time what would the world be like if it wasn't organized by something. But I didn't get very far. I was still trying to insert my card into the machine because I hadn't realized it was broken yet; the guy was already using the machine next to me, which had been vacated.

"The thing about Athens," he said--Edinburgh is supposed to be the Athens of the UK, or something--"everyone says it was such a great civilization. It lasted fifty years! And besides women couldn't vote, and most of the population were slaves!"

"Yeah, they weren't very nice people," I said.

"We're no better. We still have slaves now. They're just called 'workers.'"

"Is your machine working?"

"Is it working?" the pinstriped guy repeated. He leaned down, looked into the screen of his cash machine, and asked it, "Are you working?"

"What happened to your hand?" I asked when he took his money out of the machine. His right hand was stained black.

"I'm an artist," he said as I took my place in front of the machine.

"And you were painting an all-black painting?"

"No, no, I was working with inks," said the guy. Then he slapped me on the back and ran away. As I was walking home, I wondered what was wrong with him and wished it was wrong with more people.

And when I got home, I realized that if the cash machine had been located on the Oberlin College campus, I wouldn't have even done any wallet-clutching because it's within the range of my experience for people at Oberlin to act exactly like that. So the experience seems strangely significant and touching to me now, and I'm more excited than ever to think that I'll be back there in three weeks.

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.