31 August, 2010

Max is a miracle

I have an imaginary friend named Max. He resembles me and some of my friends, but not as much as I would like. When Max was growing up there was concern because he was incredibly disorganized and spacey. He spent hours on the Internet. He zoned out when people were talking to him. He got confused about coming up with plans and taking initiative.

But look at Max now! He goes to college and gets good grades. Or he's done with college and has a pretty good full-time job. He lives on his own. He does all these things that his parents and teachers thought he would never be able to do. And it's not because he's "recovered," because he still sucks at all the same things.

I know that when I say Max does things that are really hard for him, it sounds like I'm creating a supercrip narrative about how he is just wearing himself down to the bone doing difficult things, and you should too. And some people who know Max do talk about him that way.

But Max has a secret: he skips to the end or slides into home plate at the last minute or wrangles things out of people so that he can get stuff done despite having no executive function to speak of.

The mainstream reaction to this would be to say that Max is a bad person and if he was a good person he would try harder to get things done on time. However, he tries really fucking hard. That's what everyone with executive function problems does, because no one accommodates them because there's been very little study of them so most people don't realize they're even a part of autism, and it's hard enough to get accommodated for things everyone knows about. Seriously. No one wants to be at a point where executive dysfunction is affecting their life. Max, and I, and everyone, are working as hard as we can. It's not enough.

You have to cheat. Ask for as many extensions on papers as you possibly can. Pretend your computer is broken. Use your charm if you have any. If you're going to cry, don't wait until you're out of the room--do it where the people in power can see you. Eat the same food every day if you can't think of anything else to make. Put other things ahead of taking a shower, even if your mom said you have to take a shower every two days. Sometimes people won't notice you're cheating but even if they do and are annoyed you might still get by.

My mom goes to workshops for people with ASD and then gives me the really long printouts that go along with them. The printouts tell me to sit down and make a list of everything I have to do. When I am anxious, as I have been this year, it's hard to think about these things so I hold on to the printouts out of guilt but don't actually read them. Then my mom finds them and gets upset that I haven't read them and says that I'm not ready to live on my own.

But I am ready to live on my own. Badly. Just like I can hold down a full-time job. Badly. Just like I am getting my homework done. Badly. And I forget to balance my checkbook, which none of my non-disabled friends do because you can get it online, and my mom says, "Well it's different for you because they would be able to do it if they needed to, but you wouldn't, so you have to do it." Theoretically I understand this is true, but my checkbook remains unbalanced.

Which is bad. And I feel bad. I do! At this rate I'll never be able to go to college. But I do go to college. At this rate I'll never be able to have any friends. But I do have friends. I just don't do everything right with them all the time.

This blog is a vice. It is something I have used in the past to avoid doing work or looking after myself. Sometimes trying to force myself to do work or look after myself makes me anxious or upset. So I've also been using this blog to avoid self-injury, in a roundabout way. I'm Somewhere Else is a bad, bad business. However, when I forget its context I feel kind of proud. To someone who doesn't know me, maybe it seems like an accomplishment.

For people whose lives are controlled by executive dysfunction, I firmly believe the difference between getting stuff done and not getting stuff done is not caring about doing things right. You cannot always make a list all the time and be early for everything. You just can't. Hopefully you're good-looking or funny or you remind someone of their niece. Exploit all opportunities. Do not do what people who are not disabled tell you to do (unless you want to, of course).

All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you.
It's true that everyone will be disabled. But everyone will also depart from being heteronormative at some point, and that means fuck all to people who are actually queer or trans all the time. It really warms my heart to see trans people whose lives are actually affected in a big way by being trans snarking on college students who don't believe gender is real and use trans identity/presentation as an accessory to be donned and dropped. And I've been in environments where talking the way I'm talking is seen as a shitty thing to do, but I don't care. Sure I'm policing people's identities. That's because some people's identities are stupid.

I remember being told that disability is the one identity category we will all embody, but that is not true. Or sure it is, if you stretch the word disability until it's meaningless. But right now, a lot of people are spending a lot of money to try to find the gene that makes people like me, and if that isn't the case for you, you can shut up and stop telling me that disability is ~socially constructed~. Only you would think that proving something is socially constructed is the same as proving you and I are equal.

28 August, 2010

stimming photo project idea

(This will be like a million years in the future if I do it, plus there are ethical issues so it might not be possible, but I just thought it was a really good idea so I wanted to share.)

I used to really like to take pictures without flash in dim environments, so that I could do things like make myself have two faces (my ghost pictures). I also liked taking pictures of myself stimming because it looked like I was flying or disappearing. I don’t have much skill but you don’t need it.

I would really like to take pictures of people with developmental disabilities stimming, especially blurry pictures so that the images come off as kind of beautiful and otherworldly. Stimming is always portrayed in a really clinical medicalized context and it’s usually treated as “abnormal” if not outright bad (and it’s usually treated as bad). There are no images of people stimming that portray the people as beautiful. I’d like to take beautiful pictures of stimming for the same reason that people have to take beautiful pictures of queer people, fat people, people with physical disabilities, etc. Mainstream images don’t reflect the actual personalities and feelings of people who are different.

I am really concerned about how to do this though because I don’t want to do the project unless I can include pictures of people who have a range of abilities. People with severe disabilities are the people who are the most vulnerable to being treated horribly for stimming. They are also What Passing People Are Afraid Of when we feel instinctively ashamed about stimming when we’re growing up. Disability is stigmatized and kept out of sight so that people who aren’t obviously disabled are terrified of people who are, and of things that make us look like them. Leaving “those people” out would be hypocritical, and a big loss since some of them are great stimmers.

It would be really easy to take these kinds of pictures of people with more severe disabilities but I guess I’m concerned about making sure the person understands and agrees with the idea of the project and what the project is etc. Lots of people just take pictures of nonverbal people and use them for stuff without asking and I don’t want to do that obviously. I also don't know whether it’s ethical for me to try to recruit people I’m staff for or have been staff for in the past.

I’m not interested in taking pictures that are accurate, I’m interested in taking pictures that make the subject look attractive and cool. I’d like the people in the pictures to pick out the stimming pictures of them that they like the best.

27 August, 2010

Run Forest Run: about movement and love

The summer after my freshman year of college I took all these pictures and posted them in the Asperger's LiveJournal community.

picture of me: a 19-year-old white girl with green hair and headphones on, flapping her hand and staring into space. The picture is blurry and the sun is shining on her hair, giving it a supernatural or angelic quality.

another picture of me flapping and looking serene. The hand is flapping so fast it's not visible.

flapping with headphones on and a serious expression

jumping into the air and flapping arms, again because of the light and blurriness it looks sort of angelic.

I took these pictures because I didn't know what I looked like when I was stimming and I assumed it probably looked scary. As soon as I started taking them, I realized it looked sort of cool, at least in pictures, so I took a lot more.

Before, I didn't have an image of what a person who stimmed could look like. I'm not saying I was raised to feel terrible about stimming because I wasn't really cracked down on by teachers and parents like some people are. But it was sort of similar to how I felt about being queer--I either heard vague negative stuff, or silence.* I saw people on the Internet saying it was okay but I had trouble applying that to my real life.

The next summer, I wrote this piece: Functional Stimming. It was mostly a reaction to anti-stimming attitudes at the school, but I tried to approach the issue of stimming in an objective and accessible way. I took pictures of myself stimming and described how I felt about stimming, and I talked about two people I knew who stimmed, and included pictures of them.

Towards the end, I said:

I don't feel great about the way I stim. I wish I could stim the way Clayton does; it seems so natural and unselfconscious, just an intense expression of his feelings. I feel like I have a stimming habit, like I binge on stimming. It feels like an explosion and I feel worn out afterwards.

I remember other kids making fun of me for shaking my knees back and forth in class and compulsively touching my nose while I was reading. I don't know if that's how my stimming got driven underground. I just very much wish that instead of being this giant, dramatic, embarrassing thing, stimming could just be part of my life...

I just went and walked in circles for a few minutes trying to get my thoughts together. That was really nice. That's the kind of stimming I would like to do--calm. Something that makes my thoughts make more sense instead of ratcheting them up to fever pitch.

That summer I also made some videos like this:

One night I got stuck in the city with a headache and some general spaced-out-ness and was really screwed in terms of finding a quick subway train back to Grand Central. Last summer was the first time I really started understanding subways at all, and I'm still not very good. So I ended up riding around a lot and it was really late at night and I remember being really proud because I knew I would eventually get home even though it was hard, but I also was feeling unpleasant in other ways because it was loud and hot and I had a headache. I was thinking about Danny because I was seeing him every day and he loved subways. Thinking about Danny always made me think about passing and stimming, so I started stimming while I was waiting for the subway and it made me feel better.

And I had a horrible year in general and I became much more conscious of times when I needed to flap my hand by my side or scrape my palms along the edges of tables or step my feet around in circles. It was weird because things were so awful and in many ways I felt scared because I was letting go of many standards for being normal that I'd previously held and I think I worried that if I wasn't holding myself in place, I would somehow wake up one morning and be nonverbal or something like that.

At the same time, when I went back and read Functional Stimming, it seemed that all the problems I'd had were a lot better. Stimming had become something wholly neutral or positive. It wasn't always this full-body thing that exploded out of me unconsciously when I was alone, and hyped me up more than I wanted. It was just a tool and a joy.

I'd also started to feel differently about the way I hold myself. I think it's called posturing because when I say I move stiffly I don't mean I am stiff, or something, but that I find it nice to stick out my arms and legs and hands.

picture of me: a 21-year-old white girl standing with legs very stiff and stuck together, arms very stiff and extended as far as possible down by sides, hands in fists, face stiff and clenched.

This is an overdramatic version of what I mean, because I'm doing it on purpose, but you get the idea. It especially affects the way I walk when I'm really at all excited or at all nervous. I just move my legs very stiffly, which probably is hard on my feet or something, but it feels really nice. If I try not to look different, it gets even worse because I'm nervous, and it ends up just being in the legs which are moving really mechanically. (One time Amanda Baggs wrote a post which in part was a description of how she notices ASD people based on how they walk. Some of this explains well what I'm trying to talk about.)

I guess this spring it occurred to me that I'm not the only person in the world to ever hold my hands differently and I started thinking about what I was afraid of looking like. There was obviously something I was freaking out about and trying to avoid but when I thought about it I realized it just looked like the way some people with ID and ASD walk and hold themselves all the time, and it also looked like some people with cerebral palsy. Once I started thinking of it that way, it didn't seem like a bad way to hold myself, because I associated it with other people and not just me being different by myself.

Now instead of trying to walk normally and then occasionally walking really stiffly, and also having these huge full-body stim explosions when I'm by myself, I just walk in a way that is more uneven and "posture"-y and I tend to kind of burst into a run more and sort of have stiff legs and move them around in a jumpy way. Not that I don't jump around on my own sometimes when I'm excited, but it doesn't feel like a huge problem that takes up a lot of energy, it just happens from time to time. And I don't feel bad about holding my hands in a stiff/curled-up way that feels good.

Of course I have criticisms of the camp where I worked this summer because you should always be aware of flaws, but it was in many ways very cool and very different from The School, because we weren't encouraged to think of ourselves as socially separate from and superior to the campers. Staff got involved in campers' interests and senses of humor; we weren't trying to get them to copy us. To the extent that we were trying to do stuff, we were trying to make sure they liked us and had a good time with us.

This was apparent before the campers even got there, just from the tone of our training. I was already feeling pretty happy and safe a few days into orientation, when we were going back to our cabins for a break. I felt excited and as often happens I ended up running for no discernible reason. Another counselor saw me and said, "Run Forrest run!"

I have had people make shitty comments about the way I run, and although this person was being friendly I can still imagine that I might have felt embarrassed and angry to have been "caught" doing something like that. But I guess since Forrest Gump is in fact disabled, even though she probably wasn't trying to make a comment about me looking disabled, I just processed it calmly in my head: "Forrest Gump is disabled and I'm disabled and I reminded someone of Forrest Gump. That makes sense." In the moment it made me feel good.

I also just remember dancing a lot (I had never danced before) and being excited and squealing and posturing and tripping over things because I was running around so much, the whole time I was at camp. It wasn't anything to be ashamed of because I was doing my job properly, and there were lots of awesome people around who also squealed and ran around a lot and flapped and made motorboat noises. There was a moment when I remember being really excited and happy in a really disabled-looking way in front of the whole camp, and I felt sort of transcendent and like I was going to cry. It was a weird sensory experience too, and just in a lot of ways one of the best moments of my life.

One time in seventh grade, I remember walking around with my shoes untied and not caring what other kids said until one girl said, "You look like a boy with your shoes untied." Then I immediately tied my shoes. Since then I've gone through periods of really really wanting to look like a boy, and even though I don't feel that way anymore I generally would find it cool to be told that something about my appearance looks like a boy. I tie my shoes now, because I would probably trip over myself when I start RFRing, but I'd like to think I own the possibility of looking like a boy. And I want to also own the possibility of looking disabled.

This is a pretty nice thing actually. I don't enjoy passing. Just kidding, I love passing. Just kidding, I hate passing. I mean I don't know. I am likely to think people who are visibly disabled have it worse, but I sometimes really wish I was visibly disabled and sometimes I feel like the fact that I'm not is what has caused basically all my anxiety/dissociation problems.

I have a lot of what I think are probably normal issues for women my age--basically, thinking that I'm horrible-looking and combing Facebook for pictures of myself and even if it's just a picture of my arm totally flipping out about how my arm looks horrible. Or maybe I have it on a level that isn't normal. I just look at pictures and think I'm smiling differently from everyone else in the picture. My face is bigger or smaller than theirs. I'm holding my legs differently. My hands look stiff. No one in the picture looks like they're my friends. I look like I'm just lurking in the background.

I just engaged in a bunch of this yesterday so I'm certainly not claiming that I feel great about myself now but I think that my feeling shitty about myself has been reduced to a more standard level. I also feel like I have something to move towards the way other people do when I think about how I'd like to look or how I'd like to be. Because I have images of people who look like me.

This is the reason I have trouble identifying as just Autistic instead of developmentally disabled, just because lots of the people who have led to me feeling okay, and feeling like a kind of person instead of just something unclassifiable, have been people with ID and other disabilities. I've talked about this a lot. But I just realized the other day that things are feeling so much better so I wanted to tell you some more.

*I'm sure my parents would take issue with this, especially in terms of queer stuff. I know that most people have it much worse but the thing is that most of the messages I got about queerness and DD were either mildly negative, acted like it didn't exist, or were very long-sufferingly tolerant (like my high school). Which isn't terrible but does make it hard for you to actually form into an adult because you feel uncomfortable/depressed about a lot of the things that you are.

24 August, 2010

I'm sort of freaked out about the brain scan, if it's something real that you can see then someone could just be proven to not have it. What if I get a brain scan someday and it's not there? What if I've been Faking My Whole Life? I Tricked Everyone.

Do you know what I mean?

23 August, 2010

how does it affect you

I'm redoing the disability section of my website (enter at your own risk it's very unruly) and I wanted to write an intro just about the whole broken record subject, which I think you know what I am referring to. Usually when I am writing about this I just get incredibly bored and what I have written so far is very boring except for the end, which I like:

I will just tell you about a cool exchange I had with someone once.

Me: My friend has cerebral palsy.
Other person: Oh, how does it affect him?

The reason I thought this was cool is because I think it's often not useful to talk about disabilities in terms of "mild," "moderate," and "severe." I mean, sometimes it's necessary to use those terms as shortcuts I guess, but when you're talking about an individual I think it makes more sense to say whether they can walk, whether they can talk, and if so what is the way they walk and talk like? What is hard for them? What is something that they've learned to do on a regular basis, but it still kind of tires them out? What are they good at? What do they like to do? Do some things make them upset that wouldn't make a non-disabled person upset? Can other people tell they're disabled? How does the disabled person feel if other people can tell? How do they feel if other people can't tell? Do they ever take steps to try to keep people from "reading" them as disabled? What is their social life like? How are they at academic stuff? How are they at handling transitions? Are they clumsy? Do they make noises sometimes? Do they want to be in a relationship and if so how's that going for them? Do they live on their own? Can they eat lots of different foods and can they tell time?

I just think that, although the terms ASD and autism may seem overly broad to you, it is much better to use a broad term and then fill in the specifics than it is to act like autism exists in two distinct types, especially when there are so many stereotypes associated with each type. I'd rather someone just find out what I am like by knowing me instead of demanding that I tell them my diagnosis or my level of "functioning" or whether I am "mild."

22 August, 2010

Lying is easy, kissing is hard

I want to know where I go always
I want to know why I go always
I want to go where I go always
I want to go when I go sometimes

In the endless morning when your glasses were broken
I want to stay where you are always
I left you in the evening with the city all glowing
You will keep going till you can't find yourself, that's why I love you

Your mind contracting with your studies and actions
Builds to explosions like pictures of fractals
I want to stop myself from going, from going
I want to stay and I go.

oh oh oh call on me

A few months ago I made a post saying that most physically disabled characters in mainstream media have acquired disabilities and that I thought this was because audiences couldn't identify with characters who identified as disabled, and weren't miserable about being disabled. Disability has to be a relatively new thing that you can do montages about, like on House. Or it has to come out of a tragedy like on Glee (Artie was of course in a car accident that killed his mom when he was a kid).

I wandered in while my mom was watching Covert Affairs and I was like, "That guy is bad at pretending to be blind," and my mom was like, "Oh, he just became blind in an accident." Surprise surprise. Doesn't that make things easy for Christopher Gorham?

Anyway, in my previous post I didn't address non-physical disabilities at all. But I was thinking maybe the reason ASD tends to suck in fiction is sort of another version of the same thing. Writers cannot imagine what it's like to have lived your whole life with a disability, so they write about ASD as though it's something that just happened to the character last week. That's why characters with ASD suck at everything. (To be specific, I'm referring to characters who are verbal and whose problems are portrayed as being mainly social.)

This is something that always makes me really mad. My mom was trying to get me to watch the movie Snow Cake, which I've heard is very good and everything, but just the idea of watching an Autism Movie makes me feel ashamed and sick. I know that like most people I can be selfish and stupid, but in Autism Movies these are portrayed as defining traits for someone like me and it just sucks to know that people are watching movies and thinking that's what ASD people are like.

Lots of people with ASD have anxiety and anger problems as a result of social failure, but this is often not portrayed in fiction because to acknowledge that someone can have anxiety and anger problems, you have to acknowledge that they can have awareness of their social failure, which in turn means acknowledging that they have lived with a disability their whole life. The really oversimplified "oh I just got autism yesterday" ASD characters in the mainstream media are insulting because their portrayal implies that ASD people don't have common sense or the ability to learn from mistakes and cope with impairment.

Seriously even coping badly is okay with me. I am so in love with Mad Men 3x01 when Pete thinks he's about to be fired so he starts making an awkward speech about how he should have socialized with Lane Pryce more. Because it shows that Pete knows people don't like him. A lot of Pete's behavior in early seasons comes out of his (sometimes buried) knowledge that people don't like him, and that's one reason I enjoy him as much as I do. He is someone who has lived with whatever-he-has for 26 years when the show starts, and this hasn't been a good thing, but it has made him complicated. What really frustrates me about intentional portrayals of ASD is that the characters are incredibly uncomplicated. They have not responded or reacted to anything in their lives.

There's also the fact, of course, that these characters don't just suck on TV, but they make non-disabled people suck in real life because they think that ASD is uncomplicated, and think they're qualified to diagnose or misdiagnose people based on brief interactions. Good times for everyone.

19 August, 2010

hi, does anyone want a dreamwidth invite code

18 August, 2010

The fictional diagnostics explosion

(this post kind of went off the rails, sorry)

There is a space between visible disability and being normal. Before you start going off about how no one is normal, blah blah blah, I'd like to remind you that some people have to constantly worry about whether they're going to fuck up, some people have to go through periods of their lives (or their whole lives) without friends, some people feel that they can't express who they really are to anyone--and despite the fact that they're faking really hard, people still think they're weird. It's cool that you have a tattoo or whatever alternative thing you have, but if you don't have to worry about this stuff, then you are normal. Sorry.

Where was I? Yeah. There's a space where you are not normal and you either actually succeed in hiding it (at great personal cost) or you do a shitty job hiding it, and other people don't treat you very well.

The best part is sometimes you actually tell someone you have ASD, and even if it's a person who has always hated you for being so weird, the response is:

"You couldn't possibly have that. You're SO NORMAL. You're just using that as an excuse because I can tell you're really really normal. Everyone's a little bit different from each other but that doesn't mean they have ~AUTISM~. You're just saying that because you want to be unique or you don't want to be held accountable for your actions."

(This last part is really funny because disabled people have a ton of stuff stacked against us, so being openly disabled is probably the last way you'd try to get out of anything.)

Anyway, like lots of people with invisible disabilities I am used to hearing this shit about myself, so I don't enjoy hearing it about characters for whom I have been an f.d. (remember an f.d. is a fictional diagnostician, i.e. a fan who theorizes that a character may have a particular disability). I'm not trying to say that other fans can't disagree and say, "No, I don't think so-and-so has ASD," but I do have a problem with the contemptuous response, "What are you talking about? You must have put a lot of effort into that theory--so-and-so is totally normal and definitely doesn't have ASD! ASD isn't the same as just being a little awkward!"

This is something I wrote in an email to my friend almost a year ago, when I had ventured to link Stop barging in here and infecting me with your anxiety: Pete, Peggy, and Passing on the Mad Men livejournal community, and had received some withering stock responses:

People are always posting about Pete and calling him a sociopath and a robot; it’s a perfectly accepted part of the show that he is bad with people and very odd, so it’s not just a little bit of shyness or awkwardness; he is impaired, whatever you call it. Early on in the run of the show people used to criticize the actor and say he was “trying to talk like he lived in the 60s” because he has a really strange way of talking. I just feel like people are perfectly aware that this character is really weird to a notable degree, and even insult him for that, but then when someone says “oh, kind of like Asperger’s” it’s like “where did you get THAT from?”

Mrs. Blankenship on Basket of Kisses said, "If [Pete and Peggy] represent an accurate portrayal of Asperger’s then everyone I have ever known fits the diagnosis." This makes me wonder how many people Mrs. Blankenship has met in her life. No matter what you think caused their impairments, Peggy and Pete certainly are more socially impaired than other characters (and more impaired than most people I for one know in real life). Hasn't Mrs. Blankenship ever met anyone more like Ken Cosgrove, Harry Crane (nerdy but still social), Don Draper, Joan, Sal, Rachel...anyone? Every single person she knows in real life is as socially impaired as Pete and Peggy?

I find that really hard to believe. But why would she say that? Why would she imply that Meowser and I, who are people with ASD, don't know what ASD is?

Sometimes I feel like this attitude is just more of what I discussed in part one--the idea that ASD is such an obscure, bizarre disability that no one could really have it. This might explain both why non-disabled people refuse to believe us when we disclose in real life, and why they think it is ridiculous to suggest that a TV character could have it (unless, sometimes, if the TV character is an incredibly overdramatic and unrealistic compilation of textbook ASD traits).

However, sometimes--and I admit this comes out of bitterness--I wonder if the motivation is something more sinister. Maybe people just get really attached to the idea that a certain person is lazy, creepy, "sociopathic," annoying, immature, attention-seeking, spoiled, stoned, or whatever. They like feeling superior. Maybe they even like making fun of aspects of the person that don't quite fit into any of those stereotypes--like the fact that the person moves differently. The movement may poke at something inside people's heads, a concept they've been making fun of since they were kids--like when they would call their enemies "retarded" or "special," thinking of "retarded" and "special" people as almost imaginary, since they didn't know any people who had those labels for real. They're just words. And the way people feel about this lazy, creepy, immature person who flaps their hands has nothing to do with disability at all.

an animated image of the character Pete from Mad Men, running stimmily around a room

So I sometimes think that people feel cheated out of the fun of judgment, when they find out someone like that is disabled. They feel like it's not fair. Disabled people should look disabled! They shouldn't look like people that I'm allowed to be mean to! In fact, I never would be mean to a disabled person, so I'm pretty sure you're not disabled at all!

I think the impression that ASD is very obscure is probably the main cause of the hugely energetic and contemptuous responses to Fictional Diagnostics. But I think the other one is sometimes there too. People really don't like Pete Campbell--he's a creep. His sins are not really worse than those of other characters, but he is a "weasel," he speaks too formally, he speaks too soon. People call him a creep because he pushes certain buttons. They don't want to think about what that means.

17 August, 2010

Fictional diagnostics stock responses--part one

I've only commented at Basket of Kisses a few times, but it's one of my favorite blogs, and a place I spend a ridiculous amount of time now that Mad Men season four is off and running. Today I got the shock/delight of a lifetime because I saw that Meowser, a poster with ASD, is writing a series called Pete, Peggy, and PDD-NOS, and linked some of my posts about ASD and Mad Men! It sort of fries my brain to go to sitemeter and see that people are coming here from the Most Amazing Place in the World!

However, people have already made some of a certain kind of comments on Meowser's post. These certain kind of comments really bug me, but because I rarely post on Basket of Kisses I don't want to just go on there and act really confrontational. I really do love it there. Besides, it's not really on topic, so I'm bringing it back here.

The kind of comments I'm referring to go like this:

"I think sometimes people read too heavy into things."--Edward A.

"If [Pete and Peggy] represent an accurate portrayal of Asperger’s then everyone I have ever known fits the diagnosis."--Mrs. Blankenship

"Perhaps we can say that it is a testament to the quality of writing of the show that people seem to work very hard to find a way to say certain characters are exactly like themselves."--MM fan

I want to be clear; I don't have a problem with anyone disagreeing and saying, "No, Peggy just seems different because she has a different background, and Pete has trouble with people because of the way he was raised." What I do have a problem with is a certain kind of automatic response that non-disabled people seem to have when fans with ASD suggest that a certain character might have ASD. This response comes in two types, which can exist on their own or be combined.

1. You're reading too much into it./It's just a TV show./You're working really hard to try to make this fit.

Response #1 tries to cast the fictional-diagnostician (henceforth called f.d.) as a ridiculously obsessive fan, which is usually undercut by the fact that the Responder is on a forum or blog or LiveJournal community for the fandom. Most people who consume Mad Men (or anything else) are not involved in Internet fandom. If you are discussing this on the Internet, you've already forgotten that "it's just a TV show" just as much as the f.d. has.

The Responder also seems to imply that having a disability is like being a mastodon from outer space. It's so bizarre and out of the blue that the f.d. must have worked really, really, really hard on this theory, just so he or she could have the most original idea ever. The f.d. probably opened some crusty old encyclopedia and was thumbing through it for days on end, until finally the weirdest possible condition emerged--autism! Whoever heard of that? What could be more off-the-wall than saying that Character X has autism?

Of course, most f.d.s aren't diagnosing Character X with some random disability. They're diagnosing Character X with a disability they have a lot of experience with, or even have themselves. If you are actually living with ASD, then of course you're going to notice that Character X seems familiar in a certain way, and that ASD could explain some of his personality traits.

For example, Pete Campbell often behaves like someone who feels powerless. But in the obvious areas--race, class, and gender--he has a ton of power. Does he feel powerless because he lacks abilities that other people have? I came up with that all by myself, you guys, and it took me about a minute because I have ASD so it's easy for me to come up with theories that relate to ASD. I'm not "working hard" or "reading really heavy into things." I just tend to respond to my fandom from my own experience, like everyone else.

The implication that ASD-related theories are elaborate or ridiculous, and must take up a lot of time to think up, is insulting to people with ASD, especially when the f.d. is a person with ASD. That reaction implies that people with ASD are so other that it's not logical or intuitive to expect them to be part of a story. It also erases the fact that of course disabled people are the center of our own experience like non-disabled people are the center of theirs. I'm not other to myself, so of course I don't think of ASD as being some rare condition that no one could possibly have. Am I really expected to feel that way about it, just because that's how you feel?

Interesting new twist: MM fan's suggestion that Meowser and I desperately want Mad Men characters to be "exactly like us." Are all people with ASD exactly the same? Most of the people who think Peggy and Pete are non-disabled are non-disabled themselves--does that mean they want Peggy and Pete to be just like them?

I'm really sleepy but I will be back tomorrow with part two ("You can't just diagnose anyone with ASD! It's a serious disability! You're making it sound like just anyone could have it!"--come to think of it, that kind of overlaps). Again, not trying to be a bitch, incredibly excited to be linked at a website I love--it's just that as an ASD person in fandom I get sick of these kind of responses, and I wanted to address them.

14 August, 2010

color and My Old Self

I'm visiting my friend at his house and experiencing periods of feeling Like My Old Self. By My Old Self I mean the person I was in my sophomore year of college, which ended more than a year ago. I was learning to do all these things, like travel by myself, and I guess my mind was full of color. It's sort of rare for me to experience that sense of excitement and competence and shivery sensitivity to sound and religion and ideas. I remember that I loved everything I was studying in school, and I kept writing songs about the books I was reading and the things I was learning. I remember crying over things I learned in class.

I was also sort of enraged all the time because I thought that things were screwed up for same-sex-attracted and trans people but I felt like the community was focused on completely stupid things that didn't relate to what most people actually needed. And that kind of feeling, along with any general sense of lack of purpose, is pretty much gone because I now heavily identify as disabled and I guess I feel much more hopeful and proud and excited about what disabled people do. And to the extent that I have social justice energy it is about disability which is an area where I think I can actually do things people appreciate.

But this has also made me feel really different because there's no acknowledgement of disability rights at my school. So I think the past year's lack of color was probably first the result of my failure at studying abroad, which caused me to have impairments and emotional problems I hadn't had since high school or earlier, and then the result of coming back to school and starting to hang out with my friends again while completely boiling over with disability and feeling like it wasn't something I could express. My blog started to feel like it was being written by another person, or vice versa, and I think that's why I was having so many disassociative experiences (which often took the form of feeling like the previous year wasn't real).

So why I feel Like My Old Self right now, I don't know. Maybe because going on a trip to visit a friend is something I associate with MOS who was very social and could do a lot of things, but my friend is also someone I wouldn't know if I didn't have the identity and interests that I've developed since MOS went away. I would like to think that color and purpose could come back together for me but time will tell.

12 August, 2010

more thoughts about disability and presentation

(this is sort of part two of squandering slack)

I'll spare you a long description of my mom's problems with the way I look and dress. Besides, I write about them all the time. But it is just sort of a clusterfuck in the summer because my mom has logic on her side, i.e. it isn't reasonable to wear jeans in the summer, especially if you get easily overheated like I do and tend to throw up and have headaches. So my mom picks out the kind of pants she thinks I should wear, which are usually knee-length, and then puts me under pressure to wear them. And I go along with it sometimes even though I really want to keep wearing the same pants I wear all year. But I really don't like those other pants at all.

This summer the best thing ever happened though, because I got several pairs of athletic shorts to wear at camp, and I realized I liked them even better than jeans, and I also realized from observing other counselors that it is pretty standard to wear shorts in the summer and that's actually a more common thing to do than wearing knee-length pants. So I realized that I didn't have to feel awkward about not wanting to wear capris and they probably actually looked weirder than jeans.

You can spare me any shit about how I shouldn't care whether my clothes look weird or not. I can care if I want. And in a lot of ways I don't care, for example I could wear short shorts in order to look more standard but I like athletic shorts better. But it's just sort of galling to be wearing the capris and feel like I not only look different, but I look like I'm not in charge of how I dress.

It sort of reminds me of when I was younger and my mom would always try to tell me what I should say to other kids when problems arose. Even though the things I said really screwed me over, I wouldn't use her scripts either. I knew that her word choice was slightly off and would sound weird coming out of a 12-year-old's mouth. I feel like normal people don't think about word choice, but when they are kids they do pick out people with unusual word choice and make fun of them, so I was very aware that I already didn't use the right words all the time. If I used the wrong words I wanted them to be my own, even if they were catastrophic ones.

I was getting strangely and incoherently annoyed in an attempt to explain to my friend why it makes me mad to see a thirty-year-old disabled woman in the same high-waisted pants that her mother wears. Those pants look normal on the mother, but on the daughter they "look disabled." Except that when I say that, it sounds like I'm saying that the daughter should be dressed in order to pass, and that's not what I mean. I just feel like, whether or not a person is obviously disabled, there's a certain style of dressing that is prevalent among disabled people and makes the person look like they didn't pick out their clothes themselves. It can look very "nice"--very clean and neat--but it looks awful to me.

When I was 14, my mom forbid me to wear sneakers and skirts together, because she said it would make me look like I was mentally ill. I guess wearing combinations that aren't considered to go together, or doing other things that seem over-the-top, "looks disabled" in a different way, but to me, that way looks really good. I know a few people with ID who always wear a lot of necklaces and medals and to me that is the opposite of the other kind of looking disabled--disability is visible, but it's visible because the person is making different choices from the choices someone else their age would make, not because an authority figure is making those choices for them.

Am I making sense? I always feel embarrassed when this turns into a blog about arguing with my mom.

10 August, 2010

who does sadness belong to?

I was just rereading the transcript of the May 30 IACC meeting and I came across a particular saying that Francis Collins used in his not-especially-sensitive comments.

"A parent is never happier than your saddest child."

Now, what does this mean? Is autism the same as sadness?

And if Autistic children are sad, does their sadness belong to their parents instead of to them?

Collins, who amused me by saying, "I know this is a tough time for anybody, any family, any individual who is going through the experience of raising a child with autism spectrum disorder" (bending over backwards to include all family structures, but forgetting that actual disabled people might be having a tough time), probably does think that. What does it mean if you don't even have the rights to your own sadness?

A few months ago I was consumed by the idea that my parents would have aborted me if they had known I would have ASD. Despite knowing it would lead to a lot of drama, I couldn't help but ask my mom if this was the case. She said that she wouldn't choose not to have me now that she knows me, but that if she hadn't known me but had known "how sad you would be," she might have had doubts about bringing me into the world.

The thing is I don't think of myself as a sad person. Obviously there have been occasions when I've been really sad, but I'm a pretty dissociative person (which is scary, but I guess it happens because I need it) and I also tend to produce a lot and be very spiritual when things are going badly. I'm not saying I enjoy being sad but I just don't think of it as being a big part of my life; it doesn't happen that much and when it does I focus more on the byproducts.

The worst thing about times when my life is going badly is that my mom won't stop talking about it and basically criticizing me for wanting to do other things than emote about how bad things are. I feel like she doesn't understand that if I did constantly do that, my life would be terrible. I couldn't think that way, so I don't. The way things are, I'm more guilty about how sad she is about my "sadness" than I am actually sad myself.

It becomes an affront to her that I am not worried and sad in the way she thinks I am or should be. It also becomes insensitive for me to be uncomfortable with the idea that I maybe shouldn't have existed because of my sadness--it's insensitive to her, because my sadness doesn't belong to me, it belongs to her.

It kind of reminds me how fans of Jerry Lewis and his telethon will accuse his opponents of being "bitter" or "hateful" when in fact the opponents are the ones being positive, and the telethon is negative. Even though Jerry Lewis doesn't have muscular dystrophy, he has ownership of it and gets to decide how it feels. If people with MD don't consider their lives to be tragic, then they're taking away something that belongs to Jerry Lewis. Somehow, they're the ones being mean.

09 August, 2010

Remember when I made a tumblr a while ago? Well, I hope you don't remember, because I ended up using it to give advice to myself about my friends, but I just made a real tumblr that I'm going to try to use for actual tumblr pursuits:


(Which are, I watch a lot of television, I'm disabled and I like reading about it, sometimes I take unrealistically flattering pictures of myself, and I make habitats.)

In terms of actually posting, I know I haven't been. I had something to say about the term "self-advocacy" and the way I started to get sort of creeped out by it when I was in Vermont, but the Amanda Baggs piece I linked to in my first tumblr post expresses much more clearly the things I am feeling. It's sort of weird to go from being incredibly overworked and having no time, which was the situation at camp, to sitting in bed for almost the whole day. And it's also weird to come out of an environment where disability was so normalized and common, to The Real World. So I don't know how much I will have to say for a while, but I might be wrong.

But I'd really appreciate more comments on the post I finished a first draft of the day I left home: privilege scrounging. Maybe you already read it but I did think it was kind of epic, for me at least.

01 August, 2010

not complete thoughts

(I posted this on July 10, but on July 11 SK found out his brother died and he had to go home, so I got rid of the post because it made me too depressed to have it be on here.)

I feel a little sad about my camper SK, who is 20 and grabs people's hands and repeats phrases over and over. In the teenager/young adult section of the camp (12-early twenties), most of the campers are pretty socially functional. It's hard to explain what I mean by this, especially because I don't want to act like there's an objectively correct way of socializing. And plenty of the campers are unusual people. But while he wouldn't stick out so much in the adult section of camp, SK is the only camper in the teenage section who goes up to people he doesn't know very well, grabs their hands and tries to put their hands on his heart or his ear, and asks them over and over if they're having fun.

I love SK and I believe there's room for him in the world. However, I currently feel like there needs to be more room for him in his section of the camp. At the beginning of the session, two teenage campers who are best friends would always respond to SK's attempts to hold their hands by saying, "Stay away from me" and playing tricks on him. Stuff has improved a little--now they very patronizingly redirect SK to a high-five, and say, "Good job, buddy." (The phenomenon of passing or closer-to-passing campers patronizing more visibly disabled campers is something we see a ton of.) And this morning SK had an exchange with one of my other campers that warmed my heart:

SK: T! T, did you have a good night's sleep? T! T!
TL: ...What?
SK: Did you have a good night's sleep?
TL: Yeah man, how about you?

It's really hard to get the other campers in our cabin to stop rolling their eyes and sighing when SK tries to initiate conversations with them. One of them is still pretty ostentatious about trying to avoid SK, but I think the other two have gotten more friendly or at least tolerant. I'd like to think that my co-counselor and I may have helped model better reactions, since we openly adore SK and enjoy talking to him.

SK's counselor last year begged not to have him again, said that SK would drive TL crazy with all his talking, and thanked other campers for being so good at "dealing with" SK. This really bothers me. When SK finally arrived at camp after that buildup, I was surprised that his supposedly unbearable comments were things like: "Are you having a good time? And you look great! And you're doing great! Do you like horror movies?...Well, at least we're having fun together. And are you going to dance with me at the dance?"

SK always tries to talk to a girl who dislikes him. She is pretty much nonspeaking but she gets so tired of being asked if she's having a good time that she has managed to get out the words "SK, shut up!" on more than one occasion. I'm not saying that she should be made to be friendly to SK--I don't think that's possible, and I try to remind him to avoid her--but I am frustrated that some counselors frame these incidents as "look how much SK annoyed her and wouldn't leave her alone," as if SK has good impulse control/understanding of the situation and has intentionally made a choice to annoy other campers. I'm thankful that there are many counselors who do enjoy SK, but there are others who imply that my co-counselor and I aren't being tough enough on him, or something, because we go along with his jokes and we're not constantly going, "SK, hands off! Settle down! Stop talking!"

I'd love to see SK in ten years and find out if he has gotten more socially functional, but I also feel that, while he will always annoy some people, there's a lot more that other campers and counselors could do to accommodate SK and keep him from being isolated in the way that he is now isolated from most campers. And I have to say that I think campers can sense whether their counselors think of SK as an Obnoxious Problem, and when their counselors enjoy SK and think he's cool. When you frame someone that way (implicitly or explicitly) you give other people more room to be nasty to them.