31 December, 2010

I'm certainly not quitting this blog or something--in fact what I'm saying now won't change anything in practice--but I do find myself having a lot less to say. It's frustrating because I feel like when I don't update regularly, people stop reading, but I don't want to just write a lot of posts that I haven't thought through. I also feel uncomfortable about writing a lot of posts with very personal information, partly because I guess I feel like it's unwise when I use my real name on this blog, but also because I always prided myself on writing a blog that was more based in ideas than in my personal experience (even though my experience has always been an element).

When I started this blog, which was about a year and a half ago, I was overflowing with things to say about disability that I had not been able to express, and had not heard other people say either. I would wake up in the morning and know what I was going to write about, and several times a day I would experience the feeling again. For probably eight months it was like this, but it hasn't been like that for a while.

I still definitely learn and have experiences and realize things and get ideas, but there isn't anything built up anymore really--new stuff comes in at its ordinary and fairly slow rate. Don't leave please.


26 December, 2010

probably going to delete this because it makes me sound super unstable, so enjoy it while you can.

I'm going to a doctor tomorrow to hopefully get a lot of cognitive/learning testing, because even though I've been diagnosed with ASD a few times and stuff, a word like ASD isn't really useful when you are just really stupid at the things I'm stupid at. And I really want to know, and be able to tell people, exactly what's going on. My mom told me to write some stuff to talk to him about and I wrote this (but I won't say all of this obviously, but I thought you might think it was interesting):

Emotional Problems--which I understand are going to seem like the main thing, and it’s going to seem like, why am I going to a learning specialist for this stuff, but bear with me.

Anxiety, which sometimes feels like stereotypical anxiety but usually feels like a boring or distracting thing, like fatigue, or dissociation/derealization (I think this is interesting: I have a very strong sense of time and past, so sometimes people and things from a very specific time period will become unreal, while I, and people and things from other periods of my life, will still feel real), or a really strong desire for something to happen, or a desire to leave, when I’m waiting in a line or in class--like, a sudden sense of intense anger if for example someone cuts in front of me in line or my professor says, “well, let’s just stay a minute longer so we can all finish translating this”

Suicidal ideation, et. al. Mostly, I had a really strong interest in getting a traumatic brain injury by getting myself hit by a car, or jumping out a window headfirst. About the time I turned 22, it was all I could think about, since if you get a TBI before age 22, you’re classified legally as “developmentally disabled,” but if you get it after age 22, you’re classified as “elderly/physically disabled,” and you get worse services. Besides, I already have a DD since I have autism, and I’d rather get services with people like me. So I spent the days before I turned 22 thinking about how I should really probably get hit by a car. And then a few weeks later, after I’d missed the deadline to get my TBI, I started thinking maybe I should just actually kill myself. I know all this seems unreasonable, but I’m getting to the point. Just from knowing a bunch of other people with autism, I know that it’s not all that weird for me to have the kind of cognitive problems I have, but a lot of people don’t know that, even professionals. There’s no easy way to explain to people why stuff is so hard for me. I feel terrible. I feel stupid and lazy. I hate asking for extensions from professors, or help from disability services at school, and it’s really hard because I have to explain everything, and I usually feel like they resent me. I really hate the disability services person at my college, because in my brief dealings with her she’s made it really obvious that she doesn’t think I have any real problems--but I had to transfer my credits from study abroad, and I really needed help figuring out what to do, and if I didn’t do it I wouldn’t be able to graduate--so I arranged to meet with her. All I needed was for someone to sit with me while I made a list of everything I needed to do to complete the process; and she did that, but she was still really patronizing. (I’m actually not as paranoid as I sound; I know several people who have had bad experiences with her.)

Last summer, I worked at a sleepaway camp for disabled adults. I mostly really like working with other people with DDs, because it’s a more comfortable environment and I don’t have to worry whether anyone is noticing that I’m disabled, because I’m not the only disabled person there. I mostly enjoyed my job. But at one point, I had these campers who were older men with Down Syndrome and they would all get really confused when they were getting dressed and brushing their teeth and showering, and basically needed help staying on track for everything. Which is basically what I’m like, unless I try really hard and focus really hard. I wasn’t really able to shower easily, without getting off track, until I was probably 19 or 20.

So, it was really hard for me to remember everything I had to remember to help these guys get dressed, and stuff. I felt so incredibly incompetent and I felt like none of the other staff understood why it was so hard for me. I mean, most of them didn’t know I have autism, but even the people who I was more friendly with and had told--I mean, people just think autism means you’re socially awkward or something. So I was just getting so worn out, and I just couldn’t help feeling super jealous, and wishing I was more severely disabled like they were, so that it would be someone else’s responsibility to make me get dressed in the morning and take showers and stuff. And that if I couldn’t do something, people would just think that was understandable, and help me, instead of thinking I was an asshole, and I wouldn’t feel like I had to just hide it or lie about it because that’s the polite thing to do. So this is why I want a brain injury, or sometimes want to kill myself. Not exactly because of the cognitive problems, but because they’re not something I can prove, and I feel like a stupid person who’s probably just lying and being really lazy. I sort of hope that you’ll give me these tests and they’ll come back saying that I have the working memory of an 5-year-old, or something--like, I don’t even need to tell other people that, if I just knew that for sure, I’d be so happy.

But anyway.

Cognitive Problems--
shit for brains

it’s really hard to remember anything short-term. You can’t tell right now because I’m not in school, but usually I have a bunch of instructions written on my hand and on my computer keyboard so I can remember to do things. I try to keep assignment books or whatever, but it takes a lot of mental switching around to write down all the assignments, and it takes a lot to remember to look at the assignment book, so it doesn’t really work. So I put it on my computer and my hand because I don’t have to remember to look at them. As soon as I stop looking at something, it tends to disappear from my consciousness unless I try really hard to keep it there.

Also it’s hard to transition. Ever. It’s just really unpleasant to have to switch from doing one thing to doing something else, or to have my day go differently from the way I expected. For example, once I was really upset because a professor and the other people in a class told me that I would have to switch my work shifts to a different day, because the professor wanted to move the class to a different time. I didn’t know how to switch my shift because I don’t do things like that.

I just need someone to walk me through things, like, figuring out how to do stuff, but it’s almost impossible to ask someone to do that and that is why I sometimes want to kill myself--it’s not the fact that stuff is hard, it’s the fact that such stupid things are hard and it is so close to being easy. If it was just someone’s job to help me do stuff for an hour a week, my life would be completely different, but it’s not, so it’s not.

That is all I can remember right now, and it doesn’t really seem like a big deal--it even seems funny. And it is on the small scale. But if you’re actually in college and you can’t remember things and it’s hard to transition, and then you get to feeling anxious about all the things you’re trying to keep in your head, when the absolute most pleasant thing would be to forget them because you probably won’t be able to do them anyway, so you start cutting corners and dropping little things, because you don’t want to get upset; and you can’t stand to think about how things really are in terms of school, because you’re afraid you would get so upset you’d never come back from it; and you can’t really ask people for help because no one really gets or is trained for this stuff, and you don’t exactly understand yourself what is wrong...well, then, you just start thinking it would be better to die, not because you’re sad all the time or something, but just because it is the only easy answer to the question.

25 December, 2010

Jess gave me a Stylish Blogger Award, but I'm not. She always has nice shoes and is standing properly in her facebook pictures. I look like this (fact one, except I usually don't wear glasses and my hair is more vividly colored):

My clothes are always gross and besides, I write on them.

Anyway, I am supposed to say 7 lesser-known things about myself and tag three other people. I like Julia and the untoward lady and I like Fiona who draws PICTURES! Maybe she could draw 7 pictures about herself.

2. I hate Christmas
3. I smoke a lot but not when I'm with my parents (which I have been since Wednesday--I just got through withdrawal and life is SWELL)
4. I drink a lot of Diet Coke, and just saying I drink a lot of it is kind of understating the situation because I've seriously almost lost friends because of the way I am about Diet Coke
5. I'm left-handed
6. I like boys too much (maybe any amount is too much when you're gay as shit)
7. I'm a neoplatonic Christian sort of, but you knew that already

people you want to hide vs. people who actually don't exist

Several years ago I remember reading a New Yorker piece by one of the Autism Pop Culture kids--John Elder Robison maybe? Whoever he was, he said something about having had to create his personality from scratch, instead of naturally having one. And I was like, "yeah totally this is such a good description of what ASD is like! I can relate to this better than anything else I've ever read!"

Whereas now I'm kind of like...seriously?

It's weird to say this because a few years ago I don't think there was anything I hated more than people saying, "Just be yourself," or, "Just act however you feel." But that's what I try to do now.

Obviously there are areas in which this totally doesn't work--of course there are things I have a lot of anxiety about, or can't learn how to do with any ease, and there's definitely an element of forcing myself to do things or trying to imitate how someone else would do them. But there's a difference between consciously going against your nature, or trying to play make-believe with yourself, in order to deal with something, and just playing a part all the time. I think there were some times when people would say, "Just be yourself," in a way that was super disrespectful of who I am; it was like, "Don't react to things in a way that I wouldn't react to them, because to me your reactions look unnatural." But the fact that I used to find "Just be yourself" to be the most ridiculous thing for anyone to say to me, ever, is now kind of hard for me to relate to.

Like 14 months ago, I made this post called I'm a fake person, and in the process of writing it--well, I knew everything that was in it, but actually writing it down made me incredibly depressed. There was just this fact inside me all the time, that I was fake, and I just tried to avoid thinking about it. But now I just don't feel like that thing is there anymore. (The trans aspect of that post is really weird. I think at that time I actually thought that being trans would make me happier than being cis, but that it just wouldn't be practical for me to transition...but now I, like, actually feel like a girl, in an uncomplicated way, which has never been the case before. So maybe feeling "I'm not a girl," for me, was just a way of feeling something else that I don't have to feel anymore, but I don't know.)

I'm not trying to say that everything is baller and in fact some stuff is much, much worse since I stopped being a fake person, but I do prefer life this way. And I know I'm not going very much into detail about what being "real" or not having a made-up personality means to me, but it's complicated and it may not even look that different superficially. It just feels incredibly different inside.

Anyway, where I was going with this was probably toward the idea of people being empty or being nothing or having nothing to them, because they're different or because they can't do the things other people can do. I think it's really important to acknowledge the difference between having a self that's not socially acceptable, and actually really not having a self at all. Even if your self does have to change or fake or learn a lot of things, or even if it never is accepted by other people, it does really exist.

It's also important to acknowledge the human being/human doing divide, i.e. the difference between not being able to do something, and not being something. For example, if you can't talk on the phone, and then, through scripting and imitating other people, you become able to talk on the phone--your old self wasn't a nothing that has been replaced by an improved, fake self that can talk on the phone. Your old self was just someone who couldn't talk on the phone.

19 December, 2010

I made my fiction blog, it's Fear Claws. I don't have much up yet though.
So I just remembered something about the movie Legally Blonde, which is the kind of movie that you end up seeing multiple times at birthday parties and stuff when you're a kid, but the first time I saw it was in theaters with my mom, so I would have been twelve. There's a character in the movie, who according to Google is named Enid, who probably talks two or three times that I can remember. This character is a stereotypical lesbian feminist and all her lines are about that. I think there's also a deleted scene where she argues with the main character about the case while eating with a fork out of a plastic container.

The reason I remember this is because I actually thought it was cool to talk while eating with a fork out a plastic container, as a result of seeing the movie. Also I thought that the line "I single-handedly organized the march for Lesbians Against Drunk Driving" was super funny, even though it's not really a joke, it's just supposed to explain that Enid is a lesbian. I would even quote it.

The reason I'm telling you this is that I was thinking about how if you're a minority and you are unfortunately saddled with the desire to consume pop culture (and am I ever), a lot of the time you have to choose between getting attached to some really dumb character just because you're excited to see someone who belongs to your group, or just giving up on finding any characters who that part of you can identify with. Which is sort of okay when you're older, and besides as you get older you can find movies and TV shows that are less mainstream--but in retrospect it is so, so weird when you're a kid.

18 December, 2010

this is pretty great:


(sometimes I wonder if it's fucked up for me to find this so hilarious, since as a cis person I obviously have privilege that trans guys don't have, and maybe making fun of trans guys for this kind of thing is something that only trans women should be doing. thoughts?

but I just think that blog is a DELIGHT. And I especially love that one post that someone linked to--which is unfortunately not a joke--that's a guy who goes to Smith saying that people are transphobic for being surprised that he goes to Smith when he's a guy. Yeah. Awesome.)

*this is a parody--maybe I was just primed to know that because of the lj community that I found it in. but sorry if that's not clear.

16 December, 2010

something else about Skins

(stfu you can't imagine how much I love this show)

in 3x04 when Freddie finds JJ at Pandora's party and looks after him--I generally hate Freddie, but he's really sweet in that scene. and the whole fact that Freddie, Cook, and JJ all use the phrase "locked on" to refer to instances when JJ becomes obsessively upset; then people who aren't in the trio, like Emily, also start using the phrase about JJ when he is upset.

I think this is cool for multiple reasons.

We eventually learn that JJ has a diagnosis of "lower autism spectrum" (is this really what they say in the UK?). But the truth is, we really don't need a word to tell us about JJ. Often, pop culture portrayals of verbal people with ASD are very superficial and behavioral. It's hard to explain what I mean by behavioral, but you'll just have to take my word for it that JJ isn't portrayed like that. It's something like...you could watch a lot of clips of the show and not realize that JJ is written and played as having autism. But those moments of his character aren't at odds with the moments in between, where he certainly seems like an unusual person but it could be a lot of things, or the moments when he's quite stereotypically (but not inaccurately) "locked on" or having a meltdown.

He's just himself, the whole time.

As far as we know (well, I'm only seven episodes in, but still, that's a lot) none of JJ's friends know about his diagnosis. I'm guessing Freddie and Cook probably do, but we're not actually told that. The only time words related to ASD have been used are a)when we learn JJ's diagnosis by seeing his diagnostic papers and articles on autism that his mother has, and b)when JJ is upset and calls himself a bunch of slurs: "Retard! Nutjob, headcase, spazzo, mong, autistic fucking fruitcake, mental basket, shitty, in a fucking cuckoo's nest."

The first instance is kind of cheesy forced exposition, but the second is really interesting because we get a sense of autism not by itself, but as part of a whole group of stigmatized conditions. I think it's really--well, I can't say it's more realistic for everyone, but personally, I think that, assuming you're not part of any kind of Autistic culture, and especially if you are really upset about your disability, it makes sense that you wouldn't really identify as having "autism" or "Asperger's" or "ASD," but just as Not Being Normal. After all the idea of abusing someone for being "autistic" is not as established as abuse against people who are "retarded" or "mental baskets." So abuse against people with ASD is often done in the name of another disability that ASD superficially resembles. And therefore, it's not really strange that almost every term JJ uses in his outburst is a derogatory term for people with either psychiatric or intellectual disabilities, except for "spazzo," which I think is generally an insult based on CP and/or epilepsy; "autistic;" and "shitty."

Anyway, where I'm going with this, and with the fact that none of the other characters so far have ever had a discussion about JJ having "autism" or "lower autism spectrum" or "Asperger's," or whatever...is that the tendency to repeat a bunch of diagnostic labels in fiction, or to have a character who constantly "acts autistic," is often done in a clumsy attempt to educate, or to sensationalize the disability. In real life, people with ASD, and the people around us, don't usually behave like this.

The risk is, though, that if an ASD fictional character just behaves like themselves and isn't stereotypically, classically ASD all the time, and we don't use the word much, then consumers may just say, "Oh, I didn't realize he was supposed to be autistic, and he was just a little weird anyway. It didn't seem to really affect him." Which is annoying, because the character isn't really making a difference then. Plus there's the whole sense that if someone's ASD isn't immediately visible to you, then it's not really affecting them. But how do you show effects that aren't as obvious as a monologue or something?

What I think is really lovely in Skins is that JJ's disabled-ness is kind of like a ghost--although it's not something that people intentionally don't mention, like a ghost, but it's just something that everyone is very used to and doesn't state outright most of the time, and it's also something that isn't always apparent.

JJ has two best friends. This already takes him away from the worst of autism pop culture, where he would often be portrayed with no friends. But we soon see that there is something strange in the way Freddie and Cook treat JJ. They say some things to him that are kind of harsh, when he's being genuine ("She's not looking at you"). Cook roughhouses with JJ in a way JJ doesn't seem super thrilled by. JJ seems obligated to go along with all of Cook's plans*. There's an element of bullying in the way the two of them treat him, like he inherently has less authority or less value. At the same time we see Freddie and Cook's tenderness and sense of responsibility toward JJ when he is distraught.

(*I should note that there are some times when Freddie starts asking JJ to keep Cook out of trouble; the relationship between the three of them is certainly not a one-dimensional thing where Freddie and Cook always control, bully, and take care of JJ, but I think that's a very strong element.)

This is a really fantastically realistic and complicated portrayal of a trio of teenage friends, regardless of the disability aspect. But with the disability it becomes almost miraculous. Without the help of words like autistic or disabled (although Cook uses some words related to mental illness), we get the picture: JJ is guileless--which makes him funny, and easy to use--and afraid to stand up for himself, because he sees himself as inferior to other people--which, again, makes him easy to use and push around. He is very loyal to his friends, partly because he doesn't like things to change and partly, I think, because he doubts his ability to make new friends. Freddie and Cook sometimes treat him in a way that's really patronizing and disrespectful. (And despite this fucked up stuff, all three genuinely care about each other, because in real life friends can treat each other terribly without meaning harm.)

We also see that JJ feels guilty because his mom is stressed out about him. Which is really classic disabled kid stuff--real disabled kid, not TV disabled kid--and is conveyed really briefly and effectively.

So we kind of see JJ's disabled-ness, or what it means to him socially at least, through the way Cook and Freddie treat him and the way he reacts; and the way he feels guilty about his mom, and sometimes hates himself for looking like all those words. We definitely see straight-up impairment. But sometimes we see how the experience of growing up as disabled--not specifically ASD, but you know, "spazzo, headcase, fruitcake, retard"--has in some ways really shut down JJ's sense of what he can be and what he's allowed to pursue.

Also--the scene that started this for me, at the party, with JJ getting locked on. Freddie comes to the party, finds JJ, helps him to come outside, and then tells off Effy for not looking after JJ; and Effy apologizes. What I was originally just going to say is that Freddie and Effy are both talking about JJ as someone who needs this particular kind of support, but they're not using any words that are explicitly related to disability. Which is just an example of something that I like and think is realistic.

But another thing is just the complicated thing of being disabled and having friends who don't seem to need as much support as you need. To paraphrase, for the third time on this blog, a line from my favorite book: "They needed to treat him like an autistic person, but they also needed not to treat him that way." How is JJ supposed to say that Freddie's pissing him off and needs to stop ruffling his hair, when JJ was dependent on Freddie to come and rescue him from the party? Thinking about this really kills me. Gosh (oh my giddy giddy giddy aunt?) I love television.

ETA: Really annoyed with JJ's portryal in 3x09 though.

14 December, 2010

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.

12 December, 2010

in cheerier news, though

can I just say how AMAZING this was?

but I'm sad because Emma Bell is really cute.

This isn't really complete and it's like 3 posts in one

Hi, kids. Today I want to talk about sadness and rage. Or basically any related emotion or combination of the two that causes the people around you to be uncomfortable. An easy way to talk about this is by talking about Autism Every Day, which has been beaten to within an inch of its life, and I certainly don't have anything new to say about it, but look at this:

This is the title card of the movie, which as you know is basically a propaganda piece about how hard it is to live with someone who has autism. If I remember right, the movie features montages of young people with autism crying and screaming.

A friend of mine, who is usually pretty social-justice-y and good on disability stuff, watched this movie for the first time, and after watching about a minute of it, she said, "Wow, I didn't know autism was this bad, maybe I wouldn't be able to handle this either if I was a parent." And I felt sad that she had this response, because to me the portrayal of emotion in this movie is very obviously incredibly slanted.

Because here we have a picture of a girl crying being used to prove that people like this girl should not exist. We basically have someone's emotions being used to devalue her. And to me, it's very obvious how emotions mean completely different things depending on the privilege or the role of the person showing emotion.

If you see the family member of someone who's identified as "the disabled person" expressing emotion--crying, screaming, expressing that they want to kill themselves or kill someone else, seeming very annoyed about something pretty small like not being able to go out to lunch--this is taken of evidence of how wronged the person is by the disability that "the disabled person" has (which, I'm sorry, is not that different from saying they are wronged by "the disabled person," straight up).

For the record, I should say that I don't have any problem with the one mother in Autism Every Day complaining that she can't go out to lunch--I don't think she's being petty or something, I think it's something that represents, to her, how much pressure she's under. What I do have a problem with is that if "the disabled person" complained about something small like not being able to go out to lunch, it would probably be used to show that "the disabled person" is unreasonable. And definitely in the cases of crying, screaming, and verbally or physically showing an interest in violence against oneself or others, "the disabled person" cannot do these things without showing how undesirable their disability is, or how unbearable they are.

So if you have privilege, when you show emotion that causes discomfort in someone else, it just shows that your life sucks, and turns the viewer's discomfort toward the cause that you want to promote. If you don't have privilege, and you show the same emotion, the viewer's discomfort stays with you and is turned back towards you. I made this swell picture at artpad showing how to respond when a family member of "the disabled person" is upset to a degree that makes you uncomfortable, vs. how you should respond if "the disabled person" herself is upset.

a very messy drawing showing a standing woman crying and obviously upset, and on the other side of the picture a woman sitting with some mannerisms suggesting she has autism. a two-faced figure looks at them both. from the standing, non-disabled woman comes an arrow that says, discomfort, then asks, why is the person upset, and points to the disabled woman. from the disabled woman comes an arrow that says, discomfort, and simply points back at her

This is sure to turn out really well for everyone except the disabled person.

Someone in my family who I'm very close with has a mental health condition and I know they don't want people to know about it. But it is also very hard for me not to write about it, because in retrospect I can really see how it fits into "the disabled person" vs. family member in terms of expression of emotion. (I'm talking about this in the past tense, somewhat disingenuously, but whatever.)

I was seen as "the disabled person," while this other person wasn't. And it only became apparent to me fairly recently that I, and another family member, who regularly experienced this person screaming and crying at us, didn't just deserve this because of the way we were.

I wasn't nice always. Sometimes I felt threatened and would hit or shove the person to get them out of my space. If we were having a conflict, I would sometimes get really upset and say things that I knew were hurtful. Sometimes I was sad about things that were going on, and I cried, which caused the person to be upset.

However, I've eventually come to realize the incredible amount of room this person had compared to the amount of room I had. The person could say all kinds of small hurtful things and it wasn't considered wrong for them to do that. If I said anything back, even if I tried to be really diplomatic, what happened next was my fault. If the person cried, it was because I was hurting them. If I cried, I was hurting them by crying. If someone apologized, it was usually me. If someone tried to calm someone else down, it was usually me.

I know, now, that this person can't help being very emotional and sad sometimes, and that what happens is no one's fault. But the person never really sat me down and said, "I have depression. Sometimes things will be scary. It's not your fault." Instead they allowed everything to go into this frame, where the people they cried and yelled at had brought on this reaction by not having certain abilities. This is the only thing I resent them for, not the actual crying.

Sometimes I think that my whole interest in anti-ableism just comes out of growing up this way.

But the reason I wanted to write this in the first place is because I have this really good friend. Let's call him K. It feels like every few times I hang out with K, I end up not only crying really hard and talking about every sad thing I can think of, but I actually say mean things to K and accuse him of not caring about me. K gets upset by this, of course, and wonders if he's a bad friend. I feel bad because I'm putting the huge emotional burden of these conversations on him--but I can't seem to stop.

Today, I started trying to write K an email apologizing and telling him that he really isn't a bad friend at all. Then I started trying to explain why I treat him this way, if I don't think he's a bad friend. I ended up realizing that the reason I get so angry and difficult is that I know nothing bad will happen; K won't be mad at me long-term, he won't stop being friends with me, he won't hate me. When I'm with him, I have a safe place to get upset.

Obviously this is a problem, since I don't want to punish people for making me feel safe. But it made me think about how anger and sadness can kind of be a privilege. We think of crying really hard as being an undesirable experience. But really, the ability to cry really hard and not have it be used against you means that you have power. You have so much control if even losing control doesn't matter.
privilege denying dude macro saying, disabled people have super mild disabilities if they don't agree with me that disabled people shouldn't exist

so I made the best Privilege Denying Dude ever and only FOUR PEOPLE on the Internet liked it. And one of them was my friend who saw me complaining on Facebook about how no one liked it.

I'm seriously sad.

10 December, 2010

happy birthday, jerk.
you're #1

I watched this Skins episode and had some gay thoughts and some Autistic thoughts

So for a really long time I've been wanting to watch Skins because I knew the following information: there was this lesbian couple that everyone liked. And then one of them had sex with a guy with ASD because she felt sorry for him, and all the lesbians on the Internet were mad because it was like she was really straight! Argh! And hearing this, I was kind of like, gosh that's fucked up for the guy with ASD though. What about him? Queer Autistic TV investigation time!

So, I watched the episode where the lesbian sleeps with the guy with autism. And it was like...I actually can't believe it exists. The character with autism is the best fictional character with ASD I've ever read about or seen. It's so easy to explain why something is wrong, and so hard to explain why something is right, so I almost don't even know how to talk about why I love him so much. (Spoilers, obviously.)

The walls of his bedroom are covered with a chart he made about his relationships with other people. And that sounds so stupid and offensive, but somehow it's not. And he walks like he has ASD and he talks like he has ASD; like, the real kind, not the TV kind. And and and...I just can't even talk about it. I'll probably end up watching the entire show and then maybe I can try to write about him again.

It was such a good episode though. Like the wall chart, the "once-only charity event" sex wasn't as offensive as it sounds. Towards the beginning of the episode, JJ says something like, "If I could be normal for one day I'd lose my virginity, and then I'd tell my friends not to fight with each other and they'd listen to me instead of ruffling my hair." Emily (the lesbian character) replies that maybe he could have the things he wants if he actually pursued them. So he sets out to tell his friends what he thinks of them, with terrible results, but in the process he and Emily become closer and she announces that they should sleep together. It's not like, "I'm going to have sex with you because no one else would ever have sex with you," it's like, "I'm going to have sex with you because you think that you'll never have sex, and this will change the way you think of yourself." Which is kind of a messed up reason to have sex with someone, but it's not insulting. (And apparently he later has a real relationship.)

The episode ends with JJ's mom watching the two friends talking and laughing together, and realizing that she doesn't need to worry about him--which was one of the things he most wanted. And then I almost cried. It was so good. I just like, couldn't even handle it, from a gay or an Autistic perspective. Emily and JJ were, like, humans!

Like, if I can put on my other hat--as a person who's gay in a weird way--I really appreciated this. I feel like if people think a lesbian sleeping with men is just inherently offensive no matter what, then they don't understand what's so offensive about most "lesbians sleeping with men" plotlines. I feel like the problem is the implication that men trump women--so women can be involved with women, have sex or even a relationship, and they can even identify as gay or bi--but a guy can change everything, or a guy is the root of everything. For example, my understanding is that on House a female character was having sex with random women because she was depressed, and afraid of a relationship with a guy she liked. This obviously devalues sex/relationships between women because it's just presented as something you do, not something important like heterosexual relationships.

But what happens on Skins is basically the opposite of this. Emily is in love with a girl, she has sex with JJ as a gesture of friendship, and at the end of the episode she's still in love with her girlfriend. It shows that lesbian feelings can be secure and stable and aren't completely dislodged the minute you get the chance to sleep with a guy.

Like, I guess I'm gold star because I've never had sex with a guy, but I feel very un-gold star sometimes because I've had so many really close, affectionate friendships with guys, which have sometimes had a sexual dimension. These guys have always thought of me as gay and I've always known when involved in these friendships that if I get married I want it to be to a woman, and that when I'm sexually moved by something involving a guy, it's in spite of the fact that he's a guy which tends to mean my reactions are weaker.

To try to explain the sex thing without being too explicit, guys are like a bunch of grapes or some Easy Mac or something. I mean I love Easy Mac, but it's not a whole meal. And I don't think the fact that guys are sexual Easy Mac to me (instead of some disgusting food that I would never eat in any circumstances) makes me any less of a lesbian. I'm sorry but it's completely heterosexist to say that my feelings towards guys are on the same level as my feelings towards girls. If you say that, it's like you're saying men are just so super important that the weight of anything involving men gets multiplied by a billion so that it automatically outweighs anything involving just women.

Yeah so anyway I really liked this episode of Skins and I think it's awesome that they showed a lesbian doing stuff with a guy and still very much being a lesbian. And it was the Best Autism Ever. And I'm excited to watch more.

09 December, 2010

Shelly was still thirteen years old

In 1981, I was employed to teach a sailing course for individuals with disabilities. In an attempt to recruit new students, we visited several segregated living accommodations for people with physical disabilities. When we entered one "facility," I recognized a young woman whom I shall refer to as Shelly. Shelly and I had come to know each other while we were in a segregated public school and had become close friends. She had cerebral palsy. and was an intelligent, perceptive girl who had a dry and biting sense of humor. Together we had talked about what it was like to be handicapped, we laughed about how people reacted to us and shared many of the common ironies and frustrations.

After completing Grade Seven, I was integrated into a regular school and from there continued on into a secondary school, and then entered University. Shelly had continued her education in various segregated settings, eventually moving into a segregated residence. Shelly and I had parted when we were both thirteen years old. I had not seen Shelly for ten years since that time. Consequently, I was overjoyed to see Shelly again. I sat down and began talking with her. In five minutes, I painfully realized that Shelly was still thirteen years old.

At that moment, the connection between segregation and death became apparent.

--Norman Kunc, Integration: Being Realistic Isn't Realistic

Generally I don't like the idea of mental age, and I certainly don't think that someone should be said to have "the mental age of a child" because of their IQ score or their interests or anything. But I find this passage to be really striking. This summer when I was in Vermont--which is a place where a lot of disabled people go to mainstream schools, hardly anyone seems to live in group homes, and there are no sheltered workshops--I started to feel a difference that often existed between middle-aged and elderly people with intellectual disabilities, and people in their teens, twenties, and early thirties. It didn't have to do with how well someone could talk or something like that. Though there were many outliers in both groups, younger people overall seemed less "compliant" and seemed to have stronger interests. I discussed these two kinds of people in my Mark and David post, although in that post the two examples were the same age.

Maybe the more compliant people with less strong personalities were not exactly like children. Maybe mental age is the wrong word to use. But there is a sense of something missing. I don't mean to talk tragically about those people; many of them are great. But I think some people with intellectual disabilities must have certain experiences when they are growing up, and you can feel the distance between them and people with ID who have simply grown up.

Failure Theory

If queer theory is seeing that everything is sort of queer, then failure theory is seeing that we are all failures in our own way. If you have a disability and everyone is always saying how mild it is, or if they don't see you as disabled at all, then there is a strong sense of being a failure if you can't live up to the person they read you as. Alternately, if people think you are helpless and try to control you, then you'll feel like you have to prove yourself perfectly competent--which of course no one is. Sometimes one person has both of these experiences. Either way there's a constant sense: I can't do that, I'd be a failure. Or I already am but people will know. I'll be proving them right/disappointing them. If I am a failure (and being a failure can be as easy as failing one class in college, or using a cane, or not being able to drive) then my life is not worth living.

I actually can drive and I've never failed a class (and I'm not mobility impaired so the cane thing isn't applicable). But I'm a failure. I can feel it when I wake up in the morning. I can feel it in my throat and my ears and eyelids. I've known I am a failure for maybe ten years.

Constantly I feel I am wasting resources, devouring my friends, taking time. I know from other failures that this will always be true. I could become president and still be a failure. Failure is just who I am.

Fuck yeah failure?


I don't know much about crip theory but the name sounds like I'm not included--which is fine. I think there are different kinds of disability experience and this one belongs to me and some other people.

06 December, 2010

dear wolfgirleatsbaby,

I linked you to that post so you could email me. You don't have to email me of course but that was the intent. You could also comment!




me: okay listen to my letter to TVN.

Dear TVN,

My paper is going to be late--like hopefully it will be there when you wake up but it might come in the afternoon or the middle of the night tomorrow. Please don’t take off too many points. I don’t know if this ever happened to you when you were in college but sometimes I just get so overwhelmed and by the time I realize how paralyzed I am it’s too late to talk to the professor or get an extension or anything. Seneca says that when a powerful person like TVN shows mercy, it’s even better than when a regular person does it. I hope you agree.



roommate: I don't understand why you can't write your paper when you can write such a witty email

isn't that a cliche?

Oh my gosh tumblr pretended to be back for one minute, but it really wasn't and now I have to make dumb posts on my important blog. (I know this blog isn't actually important but I refer to it as my "important blog" sometimes.) For some reason I was tweaking out on how much I love Chase Stein from Runaways even though I haven't been into Runaways for a really long time, but this is how I felt about it when I was into it:

picture of me three years ago holding some issues of Runaways and looking super excited
(circa three years ago)

And I was thinking about the fact that I stopped respecting Joss Whedon when he wrote some issues of Runaways and he portrayed Chase as liking comic books and basically talking like Xander Harris. Which is like--Victor Mancha could have had all those lines. But it seemed like Joss Whedon's understanding of Runaways was just: oh, it's just like my stuff because they're teenagers with superpowers or whatever, so I'll just write all of them as talking like my characters, and all the dude characters will be Xander, and all the girl characters will be Willow and Buffy.

I mean, I guess that in theory there's nothing wrong with only being able to write one kind of dialogue, but I feel like if you are that way, then you shouldn't write in other people's universes if they have characters who don't talk like that. But it's seriously not just my ridiculous love for Chase talking. Well, it is. But to me the way Joss Whedon wrote Chase indicated something deeper and it got on my nerves.

Basically, I guess Runaways is a geek-centric comic in that most of the main characters are geeky/alternative in some way. And I think this is sort of what makes Chase like my favorite comic book character of all time. Let me explain. I feel like a character like Chase (who is introduced as a "dumb jock," and is a lot more than that; but that description never stops being true) is normally only presented sympathetically in really mainstream narratives, which tend to not have a ton of depth and tend to portray geek characters stereotypically. Brian K. Vaughan, the incredibly baller person who wrote Runaways, sort of decenters Chase from being the character we're supposed to identify with (which he would be in a mainstream narrative) but still portrays him with a lot of depth.

Chase reminds me of my favorite person from high school, John M. John was a jock, and he was dumb. He said dumb stuff about me being gay. He made gross jokes. He was also one of the best friends I've ever had, and he was an outsider in his own way. I feel like writers, especially genre writers, tend to be geeky/alternative and don't portray "dumb" or non-alternative characters in a compassionate way. Although I guess in a lot of ways I am Hipster Scum, I just don't really identify with the value of rejecting people who aren't intellectual or aren't alternative. I can't imagine feeling that way. I mean, maybe it's because I'm disabled or something (see you guys, I got it in there somehow!) but I try to relate to people based on how I get along with them emotionally and not based on their subculture or what they want out of life. Wow, I sound like an asshole--I mean, I can certainly be a dick and cut myself off from people for other stupid reasons. But I guess I just get annoyed by people who are anti-anti-intellectual and I got irked with Joss Whedon because I realized that he was maybe that way.

And now I'm going to pretend to be in class.

05 December, 2010

late night germs

I got this weird comment on a really old YouTube video called "More about Asperger's and looking normal." Sometimes I get comments where I think English isn't their first language, or maybe it's just related to their disability, but either way the person seems to just be responding to things like the title of the video or some random word mentioned in the video, and just saying how they feel about that thing. I certainly don't mind this or anything, it's a lot less annoying than people who will do shit like getting in an argument with me over whether I really have ASD, based on some line that they willfully misinterpreted in the video.

Anyway, this video is actually just documenting the beginning of my realization that I didn't need to try to play a role to cover for being different, and explaining that I had come to this conclusion by meeting people with severe disabilities and realizing that a lot of them they were pretty cool, and if the scariest thing I could think of was that I might look sort of like them if I wasn't careful, I had a pretty good life.

But this guy's comment is about how he has Asperger's and he looks normal and he wants to date a girl with Asperger's who is pretty and looks normal. When I saw this comment and saw what the word normal meant to this guy--obviously something very innocent, unless I misread it--I felt like maybe I overdo the whole "I don't look normal and I don't want to look normal" thing. Because for some people normal just kind of means good or whatever. Sometimes I even use it that way. ("I'm sorry I'm being so annoying." "No, you're totally normal.")

But I really don't like to be told I look normal. Is that normal?

I think for me being told I look normal is like--well, it's not good because it feels like I'm not being given any space. Like just because I look a certain way to you right now doesn't mean I always will. Maybe someday I will look less normal. I want room to react and move the way that feels right. This means that for me it's nice to think of myself as "looking disabled." This doesn't mean that I have to always or even sometimes look like someone that other people can easily recognize as disabled. I'm disabled so by definition I look disabled, since I look like myself. If I think of myself as "looking normal," then it's only sometimes true. Or it's a feeling instead of just being.

04 December, 2010

My Fierce Cords

(this is like 4 years old, I just found it)

Once I fell in love with a girl who had a tape recorder for a head. In high school kids made fun of her because she didn't have a nose or a mouth. Even now that she was grown up she couldn't escape it. She'd be walking down the street and "Hey Tape Recorder!" some asshole would yell. "Where's your face?" She couldn't even say anything back because, like I said, she didn't have a mouth. Sometimes if the guy said "Go kill yourself" she could play it back to him: "Go kill yourself. (whirr) Go kill yourself." But that wasn't very satisfying since she didn't think it up herself.

*Why couldn't I be a CD player or something,* she wrote on a whiteboard that she then passed to me. *Or, like, an iPod? Something not as embarrassing and obsolete as a tape recorder.*

"That would be weird," I said, "because when you were born iPods weren't even invented. No one would know what you were. Also, your head would be really tiny. People would think you had no head at all."

*Better no head at all than a tape recorder*, she said.

"Don't say that," I said.

We were friends all our lives. We grew up together. I was middling popular because I'm good at sports, so I was able to protect her somewhat from the other kids. They used to threaten to eject her tapes and stomp on them, but then I told the principal and they got suspended. My girlfriend--I mean, she wasn't my girlfriend then--accepted my help gracefully. She wasn't embarrassed or awkward like some people might have been.

My parents were surprised when we started dating the summer after we graduated. "But you have your whole life ahead of you," they fretted, "and she has a tape recorder for a head." I blew up at them, although it wasn't that strange a concern. My girlfriend couldn't even keep a job at the video store because customers were scared by her appearance. "I came here to rent a movie about freakish creatures, not see one!" one woman complained to the manager. My girlfriend was planning to study writing and computer programming in college, since those were two careers where no one saw you and you didn't have to talk. I had gotten into a good college and was planning to be a doctor. My parents meant well; they didn't want me to spend my life with someone who was going to have such a difficult time. But that didn't stop me from being mad as hell and telling them They Didn't Understand The Love I Had For Her, Which Made Sense Because They Clearly Didn't Love Each Other At All. I was normally a quiet, unassuming kid so my parents were stunned by how angry I got. Which made the whole tirade much more effective.

I was just as vitriolic with my friends. Not eveyrone, but some people, people who knew me as me and her as that weird Tape Recorder Head Girl I always defending, though it was weird. "Look, no offense, but is it because you feel bad for her?" they'd ask. "Because really, I thought Sarah or Kirsten would be more your type."

"I love her in a way no one will ever love you because you're a bigot," I'd say. "Why don't you go run over some gay people and Muslims in your Hummer."

I was full of self-righteousness when I spoke to my girlfriend later, my words like fire engines parading down the street. We were on the street and I wanted everyone nearby to hear how truly tough and noble I was. Like a dalmation. "I can't believe people treat you so badly," I declared. "You're the smartest most beautiful person I know, and all the world can see is your Tape Recorder Head. Well, never fear. I'll always protect you."

I was full of bravado like the dalmation, sauntering down the street after the successful rescue of some nuns. Then I saw my girlfriend's shoulders were shaking and the dalmation me whimpered and put his head down between his paws. "Oh man I'm sorry," I said. "I didn't mean it like that. I don't go out with you to be heroic or anything. I love you." This was true. "I just sometimes get carried away."
My girlfriend shook her Tape Recorder Head. As I looked on guiltily, murmuring I love yous and I'm sorrys like a ridiculous doll, she rummaged in her pocket and took out a small scrap of graph paper. She took a pen out of her jacket pocket, scribbled three words, and handed it to me.

*I was laughing.*

"Oh," I said. Was she okay? Was the stress of her life finally getting to her?

"(Whirr)," said my grilfriend, and she played back the whole conversation. The second time around I could hear other things in my voice besides confidence and badassness. I mean, I could hear them most of all, but they sounded so fierce they didn't sound real. Underneath them I could hear a little kid pretending that he could run fast and play football. I hadn't known it, but I had been faking strength and power my whole life. I hadn't known it, and no one else had noticed probably, but my girlfriend had heard it in my voice. Hearing my useless words, these big lies that she had seen through for such a long time, I was so embarrassed I couldn't even look at her.

the hangover show

(I'm too embarrassed to transcribe the spoken parts of it, but if watched I'm pretty sure it will produce lulz.)

Yeah so re the fiction thing, it actually isn't a real awesome project, it's kind of a dumb idea. But I read Bible Camp Bloodbath and it was pretty swell (I would really recommend reading Lockpick Pornography by the same author, it was really important to me when I was in high school) and I got all excited about the idea of posting a book in blog form.

But I don't want to post anything actually good because you know someday I would like to get some books published in real life and get a really small amount of money for them. So I was thinking of posting this weird book I wrote when I was 16-18 which is...okay, maybe I just think this because I wrote it, but I feel like it's a pretty terrible book that has a certain charm.

Do you like Twilight? It's kind of the same thing. I genuinely think that even though all the sequels suck, the first Twilight book and movie are genuinely great in their portrayal of two kind of boring people who have a really boring but really intense relationship. Because that's what it feels like when you're a boring person and you have a crush on another boring person! They come into bio lab and you're like OHHH NOOOO and then a bunch of paper flies up right in front of your crotch and it's terrible. Well that's what my book is like.
I'm more drunk than I've ever been in my life

thank you for reading

hate my brain

if I do a fiction project, would you read that too? you can email me at the email from my love post which no one does anymore

I really like you though. everyone who reads this has changed my life, even this out of it I can still feel it's true.

03 December, 2010

Disabled Staff Person

I think I've mostly written about being a DSP in terms of identity and also aspects of disability that aren't related to impairment, like movement--basically that it is disorienting to always be assumed to be non-disabled or be someone who moves/acts normally because you are staff, especially but not only when staff have an insulting or patronizing attitude toward the people they work for and expect you to share in that.

However, there's obviously something else that makes a DSP different from other staff people, and that is impairment. While I do think the assumption that staff people are non-disabled often comes from just general...um, ablenormativity? is there a word for that?...there's also a more solid reason for that assumption, and that is that staff are supposed to be helping people do things they can't do on their own. So, if you are a DSP (unless your disability is absolutely unrelated to your client's disability, like you have paraplegia and they have schizophrenia) you may sometimes be in the position of being expected to help someone do something that it's hard for you yourself to do without help.

Which kind of begs the question: are DSPs good staff people (assuming there is some impairment overlap between staff and client)? Should DSPs be staff people?

Well, let's try to think first of all what it means to be staff. Let's say there are two kinds of staff: staff and aides. I tend to think you should think of yourself as an aide (it's a word I prefer but I'm not sure if I deserve it). To me the relationship between staff and client is that the staff person has authority, usually because they work for someone else more powerful, and they try to get the client to follow rules. The relationship between aide and client is that the aide's job is to help the client do things that they need or want to do. Depending on the impairment, like if it involves memory problems, an aide might say something that sounds staff-y like, "Hey John, it's time to take a shower," but there will be a different motivation and the aide and John will have discussed when John wants to be reminded to take a shower.

I think impairment matters more if you are an aide. Since staff/client is mostly about staff making clients follow rules, a lot of the things the staff has to do are pretty random and have nothing to do with impairment. In some cases, you could actually switch the client with the staff and the client could perform the staff's job pretty well. For example, at the summer camp where I worked it was a rule that campers (who were mostly adults with intellectual disabilities) couldn't serve themselves at meals. Obviously some people actually did need help serving themselves, but mostly I was sitting at a table asking a bunch of people if they wanted carrots who, if not for the rule, could have just gotten some carrots themselves. And this completely artificial rule added all these dimensions to my relationship with the campers at my table, which was weird.

There's also the fact that having a good relationship with clients becomes more important if you are staff. If John and his aide Sarah don't particularly like each other, it's not any bigger a deal than someone not liking one of their coworkers. They can just be polite to each other because they're both getting what they want (Sarah is getting paid for doing her job, John is getting support he needs). But if Sarah is staff--i.e. she has to get John up at seven every morning to ride in a van to the sheltered workshop--you'd better hope the two of them are really close because John is likely to be pissed off at her a lot of the time.

No one does their job right all the time, so I feel like the measure of whether someone's good at their job is just whether they're good at the majority of the things they're required to do. Let's say I'm an aide for someone who constantly forgets what they're doing from one minute to the next. I've mentioned how extremely difficult this is for me because, well, that's what I'm like except I guess I'm slightly above the line where I get staff for it. I am going to suck at helping this person dress, shower, etc.--if I'm this person's aide I'm basically going to suck at my entire job. (I also know from past experience that I start resenting the fact that if the person doesn't get dressed etc., that is considered to be my fault not theirs, whereas in my own life if I don't get dressed etc., that is considered to be my fault too; and stuff like that.)

However! If I'm this person's staff person, I could be great at my job. I can do a bunch of random easy stuff that my employer inexplicably requires me to do instead of letting the client do it. I also--and yes I feel very creepy saying this--am very good at convincing "non-compliant" people to do stuff, and calming down people who are upset. So my success rate at doing the tasks required of me suddenly goes up from, say, 50% to 90%, in the change from aide to staff person. I become competent, for some very dumb reasons, and at the cost of someone else's freedom.

I think it's very important to explore these facts because there is not very much writing about being a disabled staff person (let's include any kind of figure who offers support and can abuse power--teacher, psychologist, etc.) for disabled people. I have to figure this out for myself. And I think just as non-disabled people assume all staff are non-disabled, it seems like disabled people kind of do too when setting up the staff/disabled relationship as simply oppressor/oppressed.

So let's be clean about this.

1. I don't know why non-disabled people choose to become staff. Maybe they think it will be easy because they have someone disabled in their family who they get along with. Maybe they do it out of charity. Maybe they just think it's fun. Maybe they couldn't find another job.

2. I decided to be staff because I am disabled and it seemed like the only safe option. If I work in environments where no one is disabled, then I end up feeling under a lot of pressure to pass and I feel depressed and isolated, and end up experiencing the whole dissociation and self-injury swarm of awesomeness. I'm also not good at a lot of normal jobs because I can be very slow and don't think about big systems very well. Being staff not only frees me from a lot of these problems, but often provides me with the experience of getting to be around other disabled people, which makes me calmer and happier. I don't feel that I have another choice but to do this kind of job.

3. But it's very, very important for me to think about the ways that my attempts to protect and look after myself can damage other people. I wrote a post addressing some semi-related issues a long time ago--mostly about how I prefer working in segregated environments. Now I find myself thinking about how I prefer (for myself, if I resolutely ignore how it affects other people, which I can't) being a staff person rather than an aide.

So where does all that leave me?

I think there are two directions I can go in. One is to practically accept that I could easily contribute to fucked-up situations (either contributing to oppression by being staff, or contributing to someone's life being a little worse by being a subpar aide), and to decide that I will always avoid those situations by:
    a. being an aide for someone whose support needs are primarily physical, emotional, and/or communicative, rather than cognitive
    b. being staff (i.e. an authority figure) in an environment where I don't think it's wrong for me to have authority--for example, working with kids instead of adults

The other direction is to argue that maybe I actually am a good aide for people who have my kind of impairments, even though I suck at some stuff, because I have more rapport with them and am good in emergencies or something, and that that should outweigh my drawbacks. But I don't know if those things do outweigh them. Emergencies don't happen enough to really become the kind of task that can change your success percentage from 50% to 90%. And like I said--although I wouldn't want to be an aide for someone I didn't click with, and wouldn't keep a job like that for long--I think that getting along with clients is awesome but it should not be part of the job because if you need to use your bond to get them to do something, then there's something wrong with the job. So I will go with the first option.

Next year I'm planning to work as a school aide for kids with disabilities (don't get confused by the terminology, this is a staff person job), and I may keep doing that for a while to get my head straight and figure out what else is okay for me to do. Before you ask, "But Amanda, why don't you just apply to a place that gives people aides, and tell them that you have a disability and you need these kinds of clients, or if you have clients who have certain kinds of impairments, you can only work with them on certain things?" I'd like to remind you that this blog is not a comedy club.

01 December, 2010

Passing as Ethics: a primer

Passing as Ethics

So, passing as ethics is a term I invented and I use it a lot. It’s at the core of a lot of the stuff I write. In retrospect, I wish I had said “passing as functioning” or “passing as cure” because I think that would be more inclusive and cover more ground. Originally I thought that passing as ethics only happened to people with autism, but as I learned more I found out that it was more pervasive than I could ever have imagined.

Here are some passing as ethics values. I’m mostly writing this as if a professional is saying it, but disabled people can totally feel most of this stuff about themselves and I certainly did for a long time. I think it’s a very basic part of life for most people.

1. It is better for a person with a physical disability to walk without any visible mobility aids than it is to use a wheelchair, crutches, or cane--even if the person finds it painful or tiring to walk unaided, and/or is danger of falling.
2. If someone’s disability causes them to have an unusual gait, this is a problem, and it would be an improvement if their gait could be changed to look more normal, even if this didn’t make the person walk any faster or more easily.
3. Habits that mark someone as a person with an intellectual disability or autism, such as flapping hands, are inherently bad, and people who do them should be trained not to do them.
4. If there is a conflict between someone with autism and someone without autism, it’s the person with autism’s fault. If a person with autism gets bullied, this is evidence of why #3 is true; if no one had been able to tell they had autism, this wouldn’t have happened.
5. If someone misunderstands a person with autism, it is because the person with autism didn’t express themselves right.
6. Deaf and hard-of-hearing people should learn to lip-read. Hearing people need not learn sign language.
7. So basically, people with disabilities should always try to communicate in a way that is comfortable for people without disabilities, even if it makes the people with disabilities uncomfortable
8. To sum up, any habit, style of movement, facial expression, interest, feeling, word choice, way of pronouncing words, way of sitting, way of communicating, okay you get the idea, that is commonly associated with disabled people is
a. the opposite of success, and must be destroyed to improve someone’s “functioning”
b. morally wrong in some cases--that is, the person who is doing the behavior that’s associated with disability becomes automatically wrong in any conflict
9. If someone who used to look like they had a disability now doesn’t look like they have a disability (to most people), then they are recovered/cured (no matter how negatively it affects them to hide their disability, and no matter how many less visible aspects of their disability continue to affect them).
10. Don’t kill yourself after reading #1-9 because people will just think you killed yourself because it was so depressing to be disabled.

Finding it (well, sort of)

So I've read the piece Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help (which is a really great piece about how inclusion doesn't work if you always put the non-disabled students in the position of giving charity to disabled students, because they can't develop real friendships) and I realized maybe I should actually go to the domain it's at and see what kind of website it is. It's pretty great! It's a guy with CP and his wife, who do training and speaking about including people with disabilities at school work etc. And some other stuff.

So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.

But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.

For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)

Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.

I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.

When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.

Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").

I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).

To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."

I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.

And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.