The Softer Side of Searing

The New Yorker has been kind enough to publish my letter, where I point out that Autistic kids don't have black mirrors for eyes. (Their version // my initial version.) I really appreciate them doing this because I hope it will make their readers consider the effects of dehumanizing language. I don't refer to my hurt feelings, but to the way people may behave after being exposed again and again to the idea that Autistic kids are bad tempered, bad to be around, and different to the point of being inhuman.

I also hope that the wording of my letter will remind people that autism is just one of the many disabilities that exist. I feel this is an important thing to remember, both for Autistic people's benefit and for the benefit of people with other disabilities.

When the New Yorker first edited my letter, I didn't like some of the changes they made. I worried that they would not publish my letter if I argued, but the Letters Editor was very nice and accommodated the 3 requests that I had.

However, I want to point something out. I summarized the black mirrors quote this way:

Shapin claims that Autistic children's eyes "are not windows to their souls, but black mirrors."

The New Yorker wanted to change it to:

Shapin mentions the struggle of parents whose autistic children’s eyes "are not windows to their souls, but black mirrors."

My original letter did not mention parents at all, nor did it need to. It was only about a 9-word phrase describing Autistic kids' eyes. Knowing that this phrase appeared in a sentence about parents does not explain or excuse it. It is just as bad to write, "Autism parents suffer because their kids have black mirrors for eyes," as, "Autistic kids have black mirrors for eyes"--and for the purposes of my letter, I don't see the value of one over the other.

I explained why I did not agree with the edit--"Bringing up parents' 'struggle,' when it's not relevant to my point, is something that I don't agree with because I think media discussions of autism are already biased toward the experiences of parents. (Of course their experiences are important; they are just not the only perspective, and they're often treated that way.) That line doesn't represent how I would write."

It's a bad habit the media has when discussing autism--always inserting the perspective of parents, whether or not there is a reason to do so.  I've read a lot of great deconstructions of this by Autistic people, but my favorite is Zoe's parody article from a few years ago, Person With Autism Manages to Do Something:

How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.

Anyway, I suggested that if the editor wanted to provide context, it would be better to quote more of the review. Now the letter includes the entire sentence that the black mirrors line is from:

It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.

This edit is okay with me, but does have an unfortunate result. My letter begins with this quote, but only talks about black mirrors--giving the impression that there's nothing to say about the rest of this quote. However, it's actually pretty awful from beginning to end. I just decided to write in about "black mirrors" because it was the most obviously wrong and offensive part of the sentence, and I felt I could write something very short about it.

I want to address the rest of the sentence, though, except for the part about the "searing experience." If people feel "seared" by having Autistic kids, I can't argue with that--it's how they feel. I feel "seared" by reading that it's "searing" to have a kid like me--and that's how I feel. If feelings can't be criticized, it's a tie. However, I can and will criticize the list of reasons that Autistic kids are "searing."

After "black mirrors," what stuck out to me is the self harm--specifically the construction, "It's a searing experience to have a child who self-harms." I'm afraid that this is such a common construction, when writing about autism, that it's not obvious what is wrong with this picture. Imagine the following description of a violent accident:

Kendra, a kindergarten teacher, slipped on the steps of her house; she fell and cracked her head open on the sidewalk. It was very upsetting to all the people on the street to see Kendra lying there. Kendra's husband fell into a deep depression, unable to deal with what had happened. Kendra's students were very distressed when she could not come back to work because of her brain injury.

Hopefully this example gets the point across. Everyone has good reason to be seriously affected by Kendra's accident, especially her husband. But we don't expect to have their perspectives emphasized to the point that they entirely drown out Kendra's perspective of her situation. Her physical condition is only described in terms of its effect on others, and her feelings aren't described at all.

That is just a ridiculous way to describe something bad happening to Kendra--because first and foremost, it happens to Kendra. It does not happen to the people around her, no matter how much they love her. I can't speak to every person's experience of self harm, but in my experience it feels pretty bad internally--and physically, of course, it hurts a lot. No one else's reaction to self-harm is as "searing" as being in that situation yourself. To frame a child self injuring in terms of how someone else feels about it is unbelievably unempathetic to the child; and when it happens over and over in the media to the point of being unremarkable, that is really disturbing.

However, as I read the multi-faceted "searing" quote again and again, what stands out the most is the implication that autism is volitional--that Autistic children are being Autistic on purpose, just to torture the people around them. I addressed this idea a few years ago in my post Behavior vs. Ability. I was saying that those who are more empathetic to a disabled person will usually see the person's actions/inactions in terms of what they are not able to do, the fact that they may have to do things in alternate ways, and that they are trying to cope. On the other hand, there's the colder view that the actions are all there is--the person "prefers to do this," "refuses to do that." No reason is given, and no acknowledgment is given to the idea that a reason might exist. The person is just being bad.

It's subtle. But look what Shapin says:

a child who doesn’t talk

Why not "a child who can't talk?" Does Shapin mean to say that kids who can't talk are just refusing to talk? Does he really believe they can talk?

a child who demands a regularity and an order that parents can’t supply

Why not "a child who needs a regularity and an order that parents can't supply?" I doubt the child is drawing up a contract of "demands" like a rock band demanding green M&Ms in their rider. The child is upset when things aren't regular and orderly. The child is struggling, not "demanding" things.

(Imagine if the New Yorker had wanted to edit my letter to discuss "the struggles of children with black mirrors for eyes" instead of "the struggles of parents who have children with black mirrors for eyes." It's really too bad how surprising that would be.)

And how come the child "doesn't" talk, but the parents "can't" supply order? Why not say "the parents refuse to supply the order the child needs?" Because Shapin has empathy for the parents and understands there are things they can't do--but the child is just a mirror-eyed cipher.

Well, I'm just spitballing here--I don't want to go point by point through the whole sentence and edit everything to make it sound more like the child is in fact disabled--not "demanding" the things they need to function, not refusing to talk to "sear" their parents, not self-harming just for the hell of it. At that point, the sentence would no longer be as damaging to Autistic kids, but it still wouldn't be very good. ("This is the worst writing I've ever seen in the New Yorker," was my mom's comment, although her judgment may have been affected by all that searing I did to her.)

Anyway, I just wanted to give the searing sentence a more thorough look, and now I'll shuffle off with 2 boring postscripts:

1. I want to be very clear that I was not offended by the idea that Autistic kids' eyes look black, or that they look different from other people's eyes. I was offended by the context and implications. I don't like the resemblance to the Black-Eyed Children urban legend and to the purely black eyes (including black sclera) in a lot of ghost/alien/monster characters in movies and TV. I don't like the idea that our body parts aren't flesh but metal, or the idea of us having "nothing behind our eyes" where other people have souls.

However, lots of people do have glass eyes, metal spines, and so on. There's nothing supernatural about that either. When I jump on this quote like, "How dare you say this!" it is NOT because I think there's something horrific or monstrous about anybody who really has glass eyes, has very different looking eyes (no pupils, etc.), or doesn't have any eyes at all. It is because of the context and the tropes it's drawing on. And while the insult was specifically aimed at Autistic people, I don't think it does blind people any favors either to talk in such a weirdly tragifying, spooky way about eyes that look different, or eyes that do not focus and make eye contact.

2. It's hardly worth responding to, but Shapin says some really false and insulting things about the neurodiversity or Autistic self advocacy movement. I assume these are regurgitated from the book. For a smart and clear self advocate response to In a Different Key, that explains exactly how untrue these assertions are, I recommend Ari Ne'eman's review.

Anna is not that nice

I work for a woman named Anna who people are always saying is sweet and nice. Her dad gave me permission to blog about her, but he might not have done that if I told him that when another client at her day program kept saying, "Anna's nice, she's a good girl," I said under my breath, "No, not really." I hope no one heard this because it doesn't sound very complimentary of Anna, but I don't think saying she's a good girl is very complimentary either. I can't fully explain why it annoys me when people who don't see her much describe her that way.

Obviously, my reaction isn't because I think Anna is a mean person. She's just fine on the sweetness/niceness scale, but it's not something I would say when describing her. I would say: she's very particular about doing the things she likes and having her favorite things around her. She's kind of dignified and she plays her cards close to the chest, maybe because of her disability or maybe just because it's the dignified way to be. There are a few things that she immediately reacts to, but usually when Anna meets someone or has an experience, she takes a while to process the situation and then shows how she feels later. She likes throwing things and ripping up napkins and paper.

First and foremost I would describe Anna as someone who likes to have her own way, which I think is not a problem because Anna's way is pretty cool and doesn't involve making bombs or setting people on fire. I like that her parents don't treat her as someone who has "behavior problems" just because she has strong preferences and is good at expressing what she wants. There is a lot to commend about a disabled person who is confident in herself--so many people think there's something sinister about a disabled person who really likes some things and really dislikes others. Even writing this, I feel like I have to shy away from triggering some stereotype of a person who will scream and break things because they didn't get to eat their favorite kind of sandwich. It seems like there are only two ideas about disabled people--an overwhelmingly good/sweet idea, and the idea of someone who has preferences, and is therefore totally dangerous or a burden on other people (because people have to accommodate them which is a fate worse than death).

Where's the middle ground for someone who has lots of preferences, but in a way that the people around her thoroughly enjoy? Or who isn't mystically "full of love," but is just as capable of love as everyone else?

I'm not really sure, and maybe I'm the one limiting Anna by scowling inwardly when people say how good she is. But it just seems like a way of describing someone that is fundamentally impersonal and ill-fitting, especially for her.

And one thing I gotta say

When someone kicks me

and I’m annoyed in the moment

and a minute later I realize that I would want ANY DISABLED PERSON I LOVE to kick someone who was trying to do what I was trying to do

that is staff infection.

I was going to try and write about this coherently and explain the specific reasons why my disability prevents me from driving but maybe I will do that another time. For now here is a cross-post from tumblr.

hate the assumption that everyone drives

I seriously see people argue that everyone drives/has to drive. um if you couldn’t drive because you would DIE, you would learn that there are other ways of getting around, but not only do they blow, other people constantly ignore or forget that you don’t drive! while I was trying to explain this situation to the scheduling person at my work, I tried to explain that it takes me FOUR HOURS to get to and from work, and she made a little wince face. yeah, sit on the bus for four hours a day and see if all you can say about that is a little wince face.

so here’s the deal, help me out here because I feel like these kind of rules aren’t always set in stone if you actually have a good reason, but like…I’m a supercrip mongoose and there’s nothing I’m worse at than explaining I’m in extreme circumstances. I’m probably going to write a letter and then it’s going to be like “oh just talk to her why did you write a letter lol” (I actually tried to write a letter originally but I got redirected to talking and the little wince face, yeah, NOT HAPPENING AGAIN)

if you have talked to me about my job you might have gotten the impression I hate it. I actually love my job, I have the same job as Hodor. let me rephrase—I love my job WHEN I’M AT WORK.

don’t love that I get paid to work 40 hours a week, but spend 20 more hours riding the bus, for a grand total of SIXTY HOURS. don’t love being home for only 12 hours in between two work nights—go to bed! sleep! wake up! eat and veg out for an hour, feed the mysterious homeless cat, get dressed, go back to work! if you are wondering how I manage showers I would advise you not to come too close to me.

if you talk to me at night when I am about to go to work, you would never get the impression that I love my job, because I fucking hate my job when I wake up at night and I can feel my short period of freedom immediately slipping away from me. I don’t hate work but I hate that I have no fucking time.

so, I was considering asking to work 3 12-hour shifts instead of 5 8-hour shifts. I knew some other people did it and it would save me 8 hours on the bus and give me longer periods of free time. but I didn’t really get around to asking because it wasn’t a huge deal and I didn’t want to change my routine so early.

then this thing starts happening where when I walk to work at night men follow me and stuff. one time this happens when I leave work to go to walgreens at 3 am, and this time other staff notice it because the guy drives into the parking lot to look for me and then drives away when security comes out.

so that morning 2 nurses from the day shift made me go sit in a room with them and gave me a talk about DON’T LEAVE THE PREMISES AT NIGHT, which I swear to God began, “Aw, did you think you were in trouble? Don’t worry, this is for your own good.” I don’t know how much more annoying they would be if they knew I have a disability, but when people don’t consciously know I am disabled they subconsciously perceive that I am 11. in this case, an 11-year-old who’s asking for it!

but stuff also happens to me when I am just walking to work, from the bus, when I have no choice! staff have also concern-trolled when they see me walking to work from the bus stop. “THIS ISN’T A SAFE NEIGHBORHOOD.” oh yeah you think?

anyway after the adventure with the guy in the parking lot, I’ve finally decided fuck this I want to start working 3 12-hour shifts and getting to work WHEN IT IS STILL LIGHT OUT PLEASE.

so…then they told me that only people who work on the independent living floor can have 12-hour shifts and people who work in LTC can only have 8-hour shifts. even though aides who technically work on the independent living floor get assigned to work in LTC all the time. that’s how I met so many people who have 12-hour shifts! so it’s clearly like, a policy/way of doing things and not the way things have to be.

God help me, the first thing I said was, “Oh, well can I work 16-hour shifts then?” and she was like “I’ll get back to you about that next week” and…yeah, fuck me, I would do it if they let me, but I’m still worried.

I was obviously totally unsuccessful at pulling at the heartstrings and explaining how extreme this situation is. I’m not crazy, right? this isn’t just me whimsically asking to work 12-hour shifts because I like the number 12. but…there I was bleating, “but my bus ride is 4 hours” and not hitting on the important ideas like, “MEN FOLLOWING ME IN CARS.”

so I’m probably going to write a letter, but yeah, advice is appreciated because the current form of the letter is pretty angry.

some touch rules

My New Years' resolution is to be really super rude if other people touch me in a way I don't want to be touched.

Here's the situation as I see it:

Touching someone in a way that makes them feel less than good isn't a favor to them that they should have to appreciate and act nice about. It's not the same as a present, where if they don't like it they have to thank you anyway.

Touching someone else isn't a God-given right so if you touch someone and they move their body away from you, you should not have the same reaction you would have if someone yanked a book away from you that you were trying to read. No one is being mean or denying you anything that you deserve.

I get that you might be confused because sometimes I let you touch me even after I was saying that it bothered me, but it is hard for me to say no because I believe a lot in compromising and being polite and making sacrifices to make other people comfortable. I probably stopped stopping you because I didn't want to have a fight or make you feel weird about the fact that you were trying to force physical contact on someone who didn't want it.

But ultimately I just don't think this is the same as compromising on what to eat for lunch. It's a person's body. You shouldn't want to touch someone who doesn't want to be touched. If it makes you feel bad that this is what you wanted and what you were doing, then you should say sorry because you were doing something bad, instead of wanting me to say sorry because I made you feel bad by pointing out what is going on.

So I've just officially decided to be a terrible person, when it comes to this one thing.

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.

why is arguing with you the only self-advocacy that counts?

I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.

I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.

The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.

First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.

But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.

I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.

Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.

Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.

Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:

*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments

All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?

Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.

So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.

thought about speaking up

sometimes it feels like it would be inappropriate to speak up. I basically live on the Skins lj community right now--actually can't remember if that's what I'm thinking about in particular, but just general fandom/pop culture forums. People use the r-word or just talk about disability in a way I don't like. I think of how I don't like it--should I say something? I end up thinking, that would be weird, this is just a casual pop culture environment, I don't really know any of these people.
But the Skins fandom is heavily queer--I don't hesitate to speak up when I think something is heterosexist/homophobic or even cissexist/transphobic.
This is because I know someone will write a comment under mine saying "+1," "iawtc," "this." Whereas if I say something about ableism, it may just be awkward. Someone may be annoyed or just not say anything.
It's okay to make this decision to avoid awkwardness. I have that right. But I've noticed how instead of just thinking, "I don't want to say this because of the reaction," I actually think, "Oh don't be so serious"--but really, I feel perfectly fine being serious about things I know it's safe to be serious about.

stuff I wish I'd known

being in 9th grade and being cast in this play as a character who didn't exist--the teacher who was directing planned to divide up lines between my character and another character. During vocal warmups every cast member had to say one of their lines and we would all repeat it, but this made me feel awful because I didn't know which lines were mine, because we hadn't gotten to blocking that scene yet. I didn't want to steal someone else's lines. I dreaded warmups so much, because of this one moment, that I tended to skip rehearsals and go to the art room and hang out with Joan. Eventually I got caught, no real harm done; I explained to the teacher several years later, once I could talk to her.

being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.

same with toilets (always).

being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.

why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.

I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.

But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.

Regular Person Listening Day

Hi, it's Autistics Speaking Day, which is a thing. Um, well, basically an organization for autism made up of people that aren't autistic--I don't know if you've ever heard of that before, but there's a lot of them. They decided that they should do a thing on November first, called Communication Shutdown, and they thought that people should promote autism awareness and try to think about what it's like to be Autistic by not using social networking sites like Facebook.

Which, I mean,

number one, like disability simulations tend to not be good, because you can't tell what it's like to have a disability just by putting on a blindfold or sitting in a wheelchair or not going on Facebook (which doesn't actually have anything to do with being Autistic)...but you can't tell what it's like, so it's silly to imagine that you can and it's better to just listen to people and treat everyone respectfully,

um, you know,

and, um, I think a lot of Autistic people, when we hear about autism awareness, are like, "well I mean, wouldn't people be more aware if they just listened to us, instead of doing something like this, which doesn't really have to do with us?" So Corina Becker, who is an Autistic person who does a lot of cool things, decided that we should have Autistics Speaking Day which just means that people who have autism could just, like, write or say something, like, on the Internet or somewhere else, just to tell people how they feel about stuff.

I made a post and stuff, it's about the sort of thing I always talk about, nothing interesting, I'm going to link to it in the description of this video.

One thing I wanted to say is just...I mean, when I see the phrase "Autistics Speaking Day" that does make me feel, you know, it makes me feel weird because some people can't speak and some people can't even write.

So, by definition, it has to leave some people out I guess, at least superficially, but, I think, um, I feel like people may see that and say, "Well, the people with autism in my life, they can't write a post, and they can't tell me how they feel." So, um...to people who feel like that, who are in that situation, I think that there's still a way of observing Autistics Speaking Day with the person in your life. And, um, one way of doing that is respecting the person and knowing that the life they live has meaning for them.

One example of the opposite of what I'm recommending is something that one of my psych professors said I think a week or two ago when she was talking about autism. Someone mentioned that one of the kids with autism they had worked with was very focused on like, people's hair, or like, shoelaces, or something, I can't remember what it was...

No, it was trains, which are great, it was actually something that's, like, inarguably cool, but then my professor was like, "Well, you know, that's autistic people, they get really interested in uninteresting things."

So, um, I mean, how does anyone decide what an uninteresting thing is? Like, I don't like the TV show Glee, but my friend likes it, and my friend doesn't like the TV show Mad Men because she thinks that nothing happens. And some people like sports, like, professional sports, and I don't like professional sports, I like comics books and some people don't, um, and, well, I like trains, and I like, um, looking at colors, and some people, um, they just like spinning things and looking at them. People like a lot of things and I guess I don't really like the idea of saying that...

I mean, it's certainly possible to say, "For this person it's become, like, a severe problem that they're always spinning things and not doing anything else." You know, you can say that, but I feel like the level of judgment in saying, "They're interested in uninteresting things..." (coughs) Sorry. I'm also sick, um, in addition to being Autistic.

But um, I think a lot of the time, people have a way of talking about people...I mean really, all disabled people, but often people with very severe disabilities who aren't verbal, people have a way of looking at them and saying, "their meaningless behavior, um...they...I don't understand what they're doing so I think that it's meaningless."

Um, I guess I feel like one thing that Autistics Speaking Day, which I guess you could just call it Regular Person Listening Day, I guess one thing that Regular Person Listening Day could be about is just seeing that everyone does what they do for a reason, and if someone in your life is doing things that you don't understand, like making noises, or getting very upset when you don't think they should be upset, or not being able to wear their clothes because their clothes are uncomfortable for them and their sensory issues, I mean, I feel like a way of listening to them is just refusing to ascribe meaninglessness to behavior that you don't understand, um,

I think that's a kind of listening that you can do for everyone no matter what they can do in terms of talking.

Autistics Speaking Day post

The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:

One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."

"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.

This kind of attitude from parents and professionals makes me want to scream.

I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.

A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.

People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:

1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."

2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.

3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.

4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.

5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.

6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.

so, while I'm being gooey on the Internet, who wants to make a line drawing of one of these carvings so I can get a tattoo of it?





(I'm not sure which one I want.)

I know this is pretty obnoxious, but it occurred to me that people can be pretty nice/strange online so it might be worth a try, also the only people who ever comment here are in fact the very two people who I already know can draw and wanted to ask, but I was like maybe that's obnoxious, so let's do it passive-aggressive style instead.

To explain why this is a GREAT tattoo, I will make a list:

1. these carvings were made by Christians back in the third century when Christianity was still awesome. I identify as Christian without the last 1700 years.

2. Jonah obviously represents me being a JACKASS and never standing up for myself or other disabled people and how God will send a whale to eat me if I keep on like this (but if I'm lucky it will be a whale depicted by a third-century Christian who doesn't know what a whale looks like, awesome).

ETA: I actually don't really want this tattoo anymore so if you are one of the people I was trying to harass into drawing me a picture, don't worry about it. You have your life back.

Hugging problems

Recently I was thinking about hugging and remembering what physical affection was like at the ASD school where I interned last summer.

I remember the last day I was there I asked my favorite kid, R.D., if I could hug him. He said yes, but when I put my arms around him he didn't put his arms around me. I remember that this was something I did at his age, and it was because I saw hugs as an opportunity to get my whole body squeezed tightly. But I also wonder if, given the culture of the school, R.D. felt that he had the right to say he didn't want to hug.

There was a lot of hugging going on. Some kids would ask for tickling or hugging as their reward for doing work. There was also a lot of teachers hugging, tickling, and grabbing kids without being asked--and the way I feel about this is complicated. I mean, it's inarguable that people with sensory issues need to learn to put up with annoying and borderline painful sensations at least some of the time. And I also think it's the case that some people who don't like physical contact will come to like it better if they put up with it for a while. But...I mean, I already feel kind of gross writing those sentences, and it makes me nervous to think of anyone taking that idea and running with it--the idea that forcing physical affection on ASD kids is good for them.

There was a boy named J.S. in R.D.'s class, who I remember as being sort of prim and serious. He would occasionally become smiley about something he really liked, such as his baby sister, but usually he looked pretty dour and complained about everything. The teachers would always grab, chase, and tickle J.S. and I'm not sure how I feel about that. J.S. would giggle so I think maybe he was learning that these things can be fun. But he never looked like he was luxuriating in being grabbed or tickled, like kids who had asked for it; his smile was always kind of wincing, his body was always stiff.

J.S. embodies how conflicted I feel about the benefits and drawbacks of being aggressively physically affectionate with ASD kids. But there was a third kind of affection at that school, and that was affection that was not supposed to happen. Twice, I remember R.D., in some sort of squeaky, wordy paroxysm, throwing an arm around me and squeezing me, to which he was told, "Keep your hands to yourself" or "Don't be silly." I've also mentioned a few times when kids would take the initiative in making a joke or game with an authority figure they liked, and be reprimanded for misbehavior (for example, turning off the lights in a room). This isn't ambiguous to me at all, it was a flat-out wrong way to do things. If R.D. wasn't allowed to impulsively hug someone else, then his teachers shouldn't be allowed to do that to him. "Can you be flexible?" was a constant question when kids who'd been expecting one thing had to accept a different result, and the only right answer was "Yes." But the teachers didn't show flexibility when a kid had an idea for how to do something, even something as small as an affectionate interaction.

There's a reason this makes me very upset, and the reason is abuse. I think I've linked multiple times to Dave Hingsburger's post The Good Girl, about a teenager with Down Syndrome who explained that if anyone abused her, she'd "understand" and wouldn't tell anyone because she wouldn't want her abuser to get in trouble. I think the attitudes at R.D. and J.S.'s school are perfectly suited to screwing up kids just that way.

I felt gross saying that sometimes having to put up with uncomfortable physical affection can be good for a kid. But at least I felt gross, at least I'm speaking from my experience as an ASD person, and at least I think it's an incredibly complex and difficult issue. The teachers at the school did not seem to think this was a complex issue, which is horribly dangerous. It makes me very nervous to think of J.S. getting older and eventually ceasing to complain about discomfort. It makes me nervous to think how R.D. will handle friendships and relationships as an adult, when he's been taught to accept contact he doesn't like and discouraged from initiating the kind of contact he does like.

But the prospect of unequal relationships seems almost jolly when compared to the possibility that one of these kids could be abused by an adult. Being trained to accept physical contact that you don't like, and being discouraged from complaining, being "inflexible," and expressing unpopular opinions, are things that could set up a child to not report being abused.

The connotations of this are horrible. They are connotations that exist in many of the attitudes at that school. Stimming is bad because it looks weird and can lead to discrimination--stimming is the enemy, not discrimination. Special interests are bad because they aren't considered normal--special interests are the enemy, not illogical constructions of what is normal. And, somehow, people who could hurt these kids are not as big an enemy as the kids themselves; teaching them power and independence is not worth it if it would mean letting them say, "I don't want a hug right now."

What is severe? (an experiment)

To be honest, my classmate's use of "severely disabled" to describe her sister kind of pisses me off. It reminds me of my feelings about certain autism rhetoric--about autism being The Worst Disability and nonverbal ASD people being "locked inside." I mean, I've been spending time with kids who have multiple disabilities (well in some cases I wonder if it's "they can't talk because of physical disability and we're not creative enough to figure out AAC, so we're going to diagnose them with intellectual disability"--but whatever). Scenes in the story involve my classmate's sister using language communicatively, kicking my classmate, and wandering off and getting lost. Joe can't do any of those things. He can make noises to get people's attention, and he can move around in his wheelchair or trainer--but he usually doesn't, because people often ignore his wishes no matter how clearly he expresses them. Kids like Joe are not troublesome to take care of like kids with ASD can be, because no matter how frustrated Joe gets, he can't kick anyone.

What a horrible way to use the word "severe."

Maybe I'm being nitpicky, because I can see that a possible response is, "Well, your classmate's sister has severe ASD, while Joe is severely physically disabled--the spectrums are different, so it's still okay to call them both severe--just like a severely dyslexic person is much less impaired than A. or Joe."

Okay but she used the term "severely disabled" not "severely autistic." So...wouldn't that mean she's on the severe end of all disabilities?

I don't know. Still nitpicking, I guess.

I'm not trying to set up some sort of "which disability is worse" contest. I mean, I don't know whether Joe is going around thinking, "man, I have the worst life." Probably not. He's a child. There are things going on he is interested in. Sometimes he gets to go outside, sometimes he gets to listen to music.

But I sometimes have a sense that he has mostly given up trying to express himself, and that horrifies me. When I saw my classmate call her sister "severely disabled," I was so offended it surprised me. I felt insulted on Joe's behalf. Which is maybe really weird.

In terms of me: I'm mildly ASD and mildly disabled--but I do sometimes feel pressured to say that I'm not even either of those things at all. And I think that's because I'm not troublesome. I don't do a bunch of obviously odd things. There are just a bunch of tasks most people are expected to do that are extremely difficult and tiring for me and sometimes I feel like I'm falling apart. Sometimes I feel like if I was more obviously odd, it would be easier for me to ask for help.

Would that make me more severely disabled?

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.)

sometimes the best self-advocacy is shutting the fuck up

I really, really don't want to write about disability for normal people.

I don't want to explain that I don't see people as objects. I don't want to explain that I'm not just imagining that I have a disability. I don't want to have to make an analogy where I go, "Some people with cerebral palsy can talk and some can't, they all have cerebral palsy, and it's the same with autism spectrum disorders." (Also, who knows if people will even get that. My dad thinks that the reason CK can walk is that he's really energetic and determined.)

I have recently been trying to have these conversations with my mom. I don't know why. I just get told that, for example, I should imagine why someone might kill their kid with a disability. This really upsets me because it's not that I don't have compassion for people who do bad things, but constantly reminding me to have compassion for a particular group of people who do bad things seems to imply that what they do is less bad than what other people do.

My mom said that maybe when I'm older I'll learn not to be so emotionally affected by things like the ableism in Precious. When she was trying to explain why Autism Speaks is okay, I said, "It's different for me because all this stuff directly affects me," and my mom got mad and said, "Don't you think autism affects me?"

Well, apparently not. Because if it affected you I think you'd probably understand a fraction of what I'm talking about.

(Don't think it's just my mom. It's not just my mom.)

I'm not even a radical. But you know what, I'm sick of caring whether anyone thinks I am. Actually, I'm just not going to try to engage with any normal people about this stuff ever again. I've been trying to understand why I'm so depressed all the time now, and I think it's because I've developed this idea that I should be trying to express myself on these issues in Real Life. I think I'm going to throw in the towel, not tell anyone I have ASD unless they definitely need to know, pull out all my passing stops, and not fucking talk about this shit anymore.

I like writing this blog because I think some people are affected by it. I like working with other DD people, because I think some of them are affected by it. Those are the only things I want to do, disability-wise, and I don't want to feel guilty. I want to compartmentalize my identity and my beliefs. I think I'm going to have a great time.

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)