14 June, 2010

just so my last post until August isn't that awful one

If you really want to talk to me maybe try to contact me by email or facebook or youtube or whatever you can think of, and if I ever get your message I'll send you a letter. Thanks for reading.

I really like Corinthians 12 and I used to have it as my political beliefs on Facebook. I want to memorize it because it's a pretty good response to just about every line of argument that I think is stupid.

1 Corinthians 12

1Now concerning spiritual gifts, brethren, I would not have you ignorant.

2Ye know that ye were Gentiles, carried away unto these dumb idols, even as ye were led.

3Wherefore I give you to understand, that no man speaking by the Spirit of God calleth Jesus accursed: and that no man can say that Jesus is the Lord, but by the Holy Ghost.

4Now there are diversities of gifts, but the same Spirit.

5And there are differences of administrations, but the same Lord.

6And there are diversities of operations, but it is the same God which worketh all in all.

7But the manifestation of the Spirit is given to every man to profit withal.

8For to one is given by the Spirit the word of wisdom; to another the word of knowledge by the same Spirit;

9To another faith by the same Spirit; to another the gifts of healing by the same Spirit;

10To another the working of miracles; to another prophecy; to another discerning of spirits; to another divers kinds of tongues; to another the interpretation of tongues:

11But all these worketh that one and the selfsame Spirit, dividing to every man severally as he will.

12For as the body is one, and hath many members, and all the members of that one body, being many, are one body: so also is Christ.

13For by one Spirit are we all baptized into one body, whether we be Jews or Gentiles, whether we be bond or free; and have been all made to drink into one Spirit.

14For the body is not one member, but many.

15If the foot shall say, Because I am not the hand, I am not of the body; is it therefore not of the body?

16And if the ear shall say, Because I am not the eye, I am not of the body; is it therefore not of the body?

17If the whole body were an eye, where were the hearing? If the whole were hearing, where were the smelling?

18But now hath God set the members every one of them in the body, as it hath pleased him.

19And if they were all one member, where were the body?

20But now are they many members, yet but one body.

21And the eye cannot say unto the hand, I have no need of thee: nor again the head to the feet, I have no need of you.

22Nay, much more those members of the body, which seem to be more feeble, are necessary:

23And those members of the body, which we think to be less honourable, upon these we bestow more abundant honour; and our uncomely parts have more abundant comeliness.

24For our comely parts have no need: but God hath tempered the body together, having given more abundant honour to that part which lacked.

25That there should be no schism in the body; but that the members should have the same care one for another.

26And whether one member suffer, all the members suffer with it; or one member be honoured, all the members rejoice with it.

27Now ye are the body of Christ, and members in particular.

28And God hath set some in the church, first apostles, secondarily prophets, thirdly teachers, after that miracles, then gifts of healings, helps, governments, diversities of tongues.

29Are all apostles? are all prophets? are all teachers? are all workers of miracles?

30Have all the gifts of healing? do all speak with tongues? do all interpret?

31But covet earnestly the best gifts: and yet shew I unto you a more excellent way.

privilege scrounging

I think this has a lot of potential--not really to be posted or published anywhere else, but just to be a really complicated and decent post on this blog--but I kept putting off the first draft because it seemed so daunting, and at this point I’ve been writing it for weeks and I’m leaving for Vermont in three hours and going to have basically no Internet until I get home at the beginning of August. So I’m just posting the first draft, which is a bunch of pieces of things jammed together. Please, say anything you can think of to say.

This is not really a piece with ideas or arguments, it’s just a really long confession. Bear with me.
On a related note, I can't help thinking of my tendency for gleefully tearing apart anyone I perceive as thinking that mild ASD is not a disability, or is especially interesting or cool. I mean I do think those views are fucked-up and fallacious, but they are not held by millionaires who pass without effort and have all the friends they could want. The situation is not a person who feels powerful wanting to push people with severe and/or visible disabilities even farther down on the food chain than they already are. That is what they're doing in practice, but it's my sickness too.

Before I go far, I should probably say that I don't think of ASD and intellectual disability as being two completely separate things, at least in practice. In addition to the facts that of course some people have both, and that people who really only have ASD are often misdiagnosed with comorbid ID, I just feel there's a lot of overlap in terms of what people with ID and ASD are like, and also what our oppression is like. I hope it's obvious that this doesn't mean I would refer to myself as ID, or try to be in spaces/organizations that are just for people with ID--but it is the reason that I don't think of this as an ASD blog or really think of my disability-related trains of thought as ASD trains of thought. Also people with ASD, ID, and both all make me feel safe, and feeling safe is the focus of what I’m trying to say.
A bit of my history as staff or pseudo-staff, because I’m not really staff yet (actually at nine tonight I will be arriving at my first real staff job, at a summer camp). It is sort of a big identity thing, it’s in the sidebar, and I guess it gives me a somewhat different relationship to DD than someone who only has DD. Better and worse.

I once, like many people, was “interested in autism” (I can’t imagine being less interested in anything now). In my freshman year of college, when I was realizing that I wasn’t cut out for my previous aspirations, I took a psych practicum where we went into a special ed school and observed/helped out in a class of nonverbal ASD kids. I won’t pretend this was some kind of life-changing experience. I found it interesting and relaxing, and was fond of one girl who would somberly take hold of my hands and run her fingers over the collars of my shirts. Her aide was really shitty to her, and one of my psych classmates explained that it was hard to find people to work with disabled kids. So that’s how I started aiming in that direction--I figured it would be easy and I couldn’t possibly be as bad as the people who were already doing it.

That summer, when I was nineteen, I got my first job. I worked in Cape Cod at a complex that contained a golf course, a drive-in theater, a regular movie theater, and a flea market (which was located in the same place as the drive-in). Mostly I cashiered at the flea market snack bar during the day, which I really liked. Some days were incredibly slow and I could just read and write. I didn’t mind days that were fast either. I liked dealing with big crowds from a safe vantage point behind my register, seeing lots of different kinds of people, and endearing myself to the flea market vendors who would then give me discounts when I wandered out of the snack bar on my break. The other people who worked during the day were two middle-aged women who were easy to be with. We would joke around together.

Every week, I would have to work about a day and two nights at the regular movie theater, where most of the employees were my age. This was a lot harder because they all knew each other and some of them seemed slightly contemptuous of me. (I should have expected this after what happened the first night I worked there, when they reacted with barely-concealed disgust after a teenage boy with a DD was unwise enough to start a conversation with them.) I also had more trouble working there because I wasn’t just a cashier, and I didn’t work fast when I was being asked to do lots of different things at once. So they were always at least slightly annoyed at me.

Then later my boss started assigning me to work at the drive-in snack bar at night. This was sort of okay because I got to use the register I was used to, and watch the movie out the windows. But I didn’t get along as well with the people who worked there. I was going through some issues about being queer, and two of the people who worked there were a middle-aged lesbian couple. I always wanted to talk to them and have them like me, but they liked everyone else better. I especially wanted to talk to one who was a special ed teacher, but she was always rolling her eyes when I had trouble understanding the words she was saying or overfocused on how to do something. At both the drive-in and the movie theater, I spent some nights getting more and more depressed, feeling really cold and nervous as my mind went over the same circles (especially when I was sweeping or mopping floors). I didn’t know anyone in Cape Cod so my social interactions consisted of joking around at the flea market, and phone conversations and letters with my friends from school. I got more and more lonely and depressed.

The last night I worked at the complex, I worked at the drive-in. As I got to work and was punching in, getting ice for the soda fountain, and putting my hair up, I started to think about how I would soon be back in college with my friends. But when I thought of my friends, I thought that they weren’t real. I knew they were, but they didn’t feel real. They felt like people I had made up.

All night I felt like I was slipping away from myself. It was really hard for me to remember any errands I was being sent on (I had to make up little songs to remind myself which novelty ice creams to get out of the freezer which was about two yards away from where I was standing). I kept wishing they’d put me on the register, which I was good at, but when they finally put me on the register, I was fucked. Every time a new customer appeared, I couldn’t recognize the food they were holding. I looked at it really carefully and slowly figured it out: pizza, chocolate bar, Hoodwich. Then I had to look at the register and find the key to press (I normally knew the register like the back of my hand). During the rush between the first and second feature, the special ed teacher snapped at me for getting in her way and accidentally signing in to the wrong register. As soon as the movie was over, I did my share of the cleaning as fast as I could, pulled on my flannel shirt and my bag of books, and slipped out the back of the building while the other employees were hugging each other goodbye.
That summer, and during the fall, I had occasional positive encounters with other DD adults. I was part of a school club that visited and arranged activities for the residents of local group homes. I also met a few people who came to the flea market and movie theater.

Once I remember being at the theater all day with a really intimidating girl named Julie--in the morning and early afternoon, almost no one came in. A guy with Down Syndrome came in with his mom, who went to the bathroom and bought gift certificates from Julie. As was usually the case when it was slow, one person was at the counter and another person sat down in the theater lobby. The guy came in and sat across from me in the lobby, and soon he was telling me about the upcoming Star Trek movie, which he obviously spent a lot of time reading about online. I am not into Star Trek (except the girl version, which I don’t think the movie was based on), but I could occasionally interject, “Oh, I love Simon Pegg,” and I was relieved enough by the non-stressful interaction that I enjoyed everything he had to say.

I remember wondering what Julie thought. It was probably obvious that I had no job-related reason to talk to this guy. Did she think I was being nice? Did she think, wow, Amanda’s so weird that she can only talk to a person with Down Syndrome? (Number two is of course the true assessment, although it’s interesting that I assume the agency is mine. “That guy has such a calming presence that even a giant freak like Amanda doesn’t mind talking to him” is an equally accurate way of putting it.)

These brief encounters were pleasant, but the real game-changer occurred in the spring term of my sophomore year. My friend suggested that we volunteer twice a week at the MRC sheltered workshop for DD adults. Ostensibly we taught a class about countries--we would discuss facts about a particular country, look through books about the country, and do a related craft. Talking and looking at books didn’t take very long, and coloring gets boring after the first thirty years, so we often spent a lot of time talking about whatever we wanted. After class, my friend and I would walk around the workshop saying hello to people we had met when visiting the group homes. Every time we were there, our beloved Mike Ward would come and find us at least twice (barging into the conference room to show us his fliers, running up to us before we left and giving us a drawing he’d stolen from someone else in his group home).

Over time, three things happened.

1. There were some people I became more close with, and would usually sit and talk with during class. I learned a lot about what was important to them and what they were happy and unhappy about. It was cool because it was the first time I really saw “that kind of people” on a regular basis and knew them well enough to consider them friends.
2. A lot of things I hated about myself were things I subconsciously associated with “that kind of people.” Once I actually met a lot of t.k.o.p., I was able to recognize the nature of my self-hatred; and once I got to know some of them, I was able to see that I should be unashamed of any resemblance between us.
3. I loved going to the workshop because a lot of the people were so loud and effusive in how they expressed themselves, and many people were really happy to see my friend and me. I felt that here, people liked me, I knew where I stood with them, and there was enough diversity of behavior that I didn’t have to worry about doing things right. I once said that I hoped the afterlife was in the MRC workshop.
Most feelings can be accurately summed up by quotes from the movie Serenity. This feeling's quote is the thing the Operative says to Mal about how there would be no place for him in a better world. It sums up the guilty resentment I experienced as I became more advanced in how I thought about developmental disabilities--saying "ID" instead of MR or retarded (the words that the nondisabled people around me used), and becoming more aware that sheltered workshops and group homes weren't something I should simply accept as the places where MRC consumers would naturally work and live. The people at MRC were some of the only people in the world I felt uncomplicatedly safe with; although I recognized it as fair that I should feel scared of offending them the way I felt scared of offending everyone else, I felt that I’d lost something when I realized there was an appropriate word to use and I hadn't been using it.

I liked the workshop and the group homes, because they were environments where people without disabilities were in the minority. I hoped to work at the MRC school after college because it had the kind of low-key setting I felt comfortable in, and the building was full of kids who looked and acted different. I wasn't interested in being an aide for an ID or ASD kid at a mainstream school, where I imagined the halls would be noisy and chaotic, my student and I would sit in a neat row of desks, and the non-disabled students would bully us both. (If my student was socially successful, of course, that would also suck; my student would be my only person to talk to, since I knew I wouldn’t fit in with the teachers and other aides.)

I'm using the past tense even though not all these feelings were in the past.
I've only been to the workshop twice this year. But I have cashiered at my school's dining hall during the period of the day when several people from the workshop also work there, and in light of becoming more guilty, this has been a tense experience.

First there is Laurie, who is someone I knew at the workshop last year. We weren't close because she was always with her boyfriend, but when she saw me at the dining hall she would say hello in the energetic way she did most things. Sometimes, in the first few weeks of my job, she would come up to the register and we would each ask how the other person was doing. This petered out, and I'm wondering if it was because I felt self-conscious around Laurie and talked to her in the shy restrained way I would talk to an acquaintance who wasn't disabled. After a month, she just said hello to me in a bored way, and this made me sad.

Second there are other people, who I liked to watch when I was at work because it's a relief to see people moving jerkily, swinging their arms, or concentrating on things you're not supposed to concentrate on. Some of them I wanted to talk to--a guy with a beard, a guy who warned me not to touch a stack of hot dishes. I would always walk by the MRC people to punch in and out, to get detergent, to throw rags away--it started to make me feel cold like I felt cold during nights at the theater complex, this feeling of not being able to talk to them because I wasn't good for them or was drawn to them for the wrong reasons.
I think of myself as very normal-acting. And I am very normal. Acting. I have spent a lot of time buckling down to get through things without being immediately identified as extremely different. When you ignore feelings for long enough, they go away, and this means that in addition to my occasional dissociative symptoms, the fact that I for example have anxiety problems is something that I have to prove to myself logically by making a list of things I’ve done that could have no other motive. I tend not to feel angry when I hear people say things like, “Retarded people depress me because there’s no point to their lives,” because I do not feel anger on a regular basis. I figure that professionals who try to stomp stimming out stimming people are just coming from a place of not really examining their privilege or putting themselves in stimming people’s shoes. Actually a lot of the writing on this blog, I think, is a result of my numbness and subsequent willingness to engage with arguments that are quite irrational and hateful.

Anyway, I think what I’m trying to say is that I don’t think of myself as disabled. Or I do but I don’t. In terms of working with developmentally disabled kids and adults, I don’t think of myself as a DD person who feels understandably relaxed when I get to stop packaging myself for non-disabled consumption. Instead I just think of myself the way I imagine non-disabled people see me: this weird girl who is really drawn to DD people, beyond professionalism, beyond allyship...just, kind of creepy.

As I don’t experience anger and anxiety on an obvious level, I forget what it means for me that I am normal-acting. But I can try to construct the facts like a detective. I have some very good friends and they are different. But the truth is that most moments (airport, library, classroom) I never stop working, I feel incredibly inadequate anyway, and that’s painful in a way I don’t think about because it’s always there. Except with certain people at the MRC.

Passing is not some sort of miserable burden--the group homes I think of so nostalgically are not places I’d want to live myself. I like being in college and thinking about where I want to move after I graduate. I like blundering around alone more than I would like having people ask if someone like me should be left unattended. I like privilege, do I ever--but I would like to avoid having to earn it with the constant, barely successful work of passing. If I was staff in a segregated environment, that would be possible--I’d retain the social status of a normal person without having to actually be around n.p.s.

So I mean--I’m not saying I’m not a piece of shit.
What I try to do is--and I mean, I don’t want to feel it all, but the other week I told my best friend that I could remember facts about him, I could remember how we started talking, but I felt emotionally like I’d never met him before. I was even kind of nervous, like I was talking to a celebrity for the first time, but trying to pass for someone who knew him well. I didn’t realize until my friend got upset that this wasn’t something that happened to lots of people. I conclude that this level of dislocation, while practical, is a little unbearable if I’m going to continue being alive.

What I’m trying to explain to myself is that I also count. Because of course I know that I’m a piece of shit--I understand that it is horrible to feel attached to segregated environments because those are generally environments where people have less control. I got very afraid of these feelings in myself, they were a piece of my sin I couldn’t even look at--and this was infuriating because I had felt like the person I was with MRC people was the only really pure part of me. I began to sort of resent progress, or at least hope it would happen slowly so I could still have the kinds of jobs I wanted to have.

I am trying to remember that I am in fact disabled and that I’m actually stressed out by real things, and that a better world for disabled people is not a world where Disabled People (whoever they are) get better and I am still stuck where I am. In a better world I would not have had to hit on a solution to avoid the wearing down of my ability to feel or sense things; I wouldn’t have to think about my life like Fantastic Mr. Fox, trying to locate the exact tunnel I can use to feed myself without coming in contact with Boggis Bunce and Bean. I’m trying to remember that if I wasn’t disabled I wouldn’t feel like I’m getting away with something when I get a job or have a conversation with a stranger. When people asked me out I wouldn’t avoid answering rather than wonder when they would realize what was wrong. If the MRC workshop is a refuge then it’s actually a refuge from something, right?

I think I’m trying to remember that while I can and do oppress MRC consumers if I accept everything the MRC does as The Way Things Should Be, instead of hating myself it is better to untangle it and try to remember that I can also be helped by that nebulous Progress.

10 June, 2010

squandering slack

It is a truth universally acknowledged that you probably can't write a really srs bsns post about having blue hair. Also I'm completely aware--well, as aware as I can be--that having blue hair and not "dressing nicely" are less risky things to do if you are rich and white. So even if I feel happy about looking the way I want to look, I don't mean to write about it in a way that implies that other people who would like to dye their hair and not dress nicely necessarily can/should do so.

That said, this is sort of a constant struggle I have with my mom (and by constant I mean it's now on a really low level just because my hair has been like this for a long time) which is summed up really well by something she told me two years ago. She told me that when I was a little kid, my speech therapist tried to reassure my parents by telling them that I was pretty, so people would cut me some slack.

I think you possibly know how I feel about the idea of people being "cut slack." Like a person, part three covers it a little. But to be specific, I just feel that I put in much more work with other people than they do with me, so I think they should be able to handle it that I'm slow or I don't talk very well or they think my expression looks nervous. And I don't really think anyone is being cut slack if I am not being--what, harshly judged, for not being as fast or talking as loudly and precisely? How is not being ableist cutting me slack?

Anyway, the context in which I was told the story about the speech therapist was that I was being told why I shouldn't dye my hair--the idea being, I need to make myself as conventionally pretty as possible, so that people will forgive me for being disabled.

I don't like this so much.

My mom and I also have some issues about me dressing nicely (which, you know, is difficult/undesirable for some of the same reasons that being femme would be). I was complaining about this to my friend's mom several months ago (my friend has CP) and she said that she always made an effort to dress my friend nicely when he was a little kid, so that his teachers could see that his parents cared about him and would make a big deal if anything bad happened to him. I've also heard a few times about people with ID and ASD whose parents were really really obsessed with having the person dress nicely. (You know what dressing nicely means, right? I don't know how specific I can be. Or if it makes sense to be specific about something like this.)

I understand why parents of disabled kids worry about their kids dressing nicely, but it's hard to want to dress nicely when dressing nicely feels like supplication. Even if there weren't real sensory and aesthetic reasons that I don't like to dress nicely or have my hair a normal color, it would leave sort of a bad taste in my mouth. Dressing nicely becomes a way of saying: please don't notice I'm disabled. Or, if you do, please forgive me.

The new best google search

"I have NLD and people say I talk like I'm gay"


08 June, 2010

I forget how we get on these topics

My mom teasingly asked me if I was mad at her for planning to abort me if I was XY (which would mean I'd have Nettleship Falls, which would mean I'd grow up as a person with low vision, and become legally blind at about the age I am now). I said, "I think it's screwed up, but you're my mom."

A minute later, I ate some of my mom's poached eggs even though I don't usually like eggs. I said, "Maybe I'm pregnant. I hope I don't have a kid who's not disabled."

Her face froze. "Amanda," she said, "what a horrible, stupid thing to say."

Since I will never be pregnant, my statement is kind of a joke, while my mom's decision to abort me if I was XY was a real decision, and not a joke.

06 June, 2010

Hugging problems

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

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

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

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

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

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

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

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

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

google search that makes up for every dumb or offensive one, ever

"examples of ableism in the movie precious"

I love you, person. I love, love, love you.

I just wish there had been more results for your search that were actually related.

05 June, 2010

acquired disability is hardly the only kind

I was thinking about Battlestar Galactica and how two of the characters who acquire disabilities are bitter about it and one becomes evil. On FWD/Forward this was said to be a bad thing, and although I do think it's cliched, I guess I don't find the trope as inherently offensive as some people do. I don't think it's unreasonable for a person who acquires a disability to be quite upset about it. It's a very different experience from being born with one.

[Fun fact: The third acquired disability on BSG was actually written in at the last minute as an accommodation for the actor's temporary disability. I really think that inflexible notions of "the way things have to be done" is a huge barrier for PWDs in many different areas--actually, one of the biggest barriers of all--and the fact that the BSG writers don't subscribe to that shit redeems them in my eyes for anything they've done wrong.]

However--why are fictional characters with physical disabilities almost always people with acquired disabilities? Usually paraplegia? Don't quote me on this because I'm too lazy to do an analysis of all the recent TV shows and movies that have included characters with disabilities, but I think I'm right. For example I think Avatar was the most recent big movie that had a character with a disability, and he of course had paraplegia. I think it's usually paraplegia. (Actually, House is an extremely good example--it's probably the most popular TV show with a major disabled character, and he is played not very convincingly by a non-disabled actor, and though he is well-developed he fits the bitter/evil disabled person stereotype in a way that wouldn't be possible if the character had been born disabled).

One obvious reason is casting. As we all know, people with disabilities can't act, so you can only write disabled characters who can be played by nondisabled actors. There are some disabilities where people who have them look physically different. There are also disabilities where people move differently--a person who doesn't have CP probably could play someone with CP, but it would take actual study and work. Which would be terrible.

(I want to start watching Breaking Bad for the sole reason that there is a character with CP. He's played by an actor with CP, which makes it 400 times better, but even if he wasn't, I'd just be so excited to see a character with something besides a spinal cord injury.)

But the other reason, I think, is just that the idea of someone being born with a disability is unrelatable or unattractive to audiences/writers, or threatening, or just inconceivable--which makes me really angry. I'd like to think this isn't true but I think it's not only tremendously rare to have characters who were born with disabilities, it's especially rare to be given anything from those characters' perspectives (this includes telling their friends how they feel, having a relatable emotional outburst, and so on).

I think that:

1. It is hard for normal people to relate to someone with a disability who is not upset about having a disability. It's a lot more logical for someone to be upset about having a disability if they didn't have a disability before. Then the normal people can just be like, "yeah, I can relate, that would suck." Whereas someone who's just never been able to walk very well and is used to it would be impossible to relate to because...HOW CAN YOU BE OKAY WITH NOT BEING GOOD AT WALKING?? THAT'S SOOO TRAGIC!

2. Maybe people who acquire disabilities don't "feel disabled," at least at the beginning of their life with a disability. Maybe normal people can't identify with people who feel disabled, or they don't think of us as real, maybe because we're not good enough at being upset. So if we are portrayed, the focus has to be on our relatives and how upset they are, because watching a non-upset disabled person is just not possible for most people?

What do you think?

what happened to NTs are Weird, I'm really sad

(I know it's been gone for quite a while but I guess I just kept thinking it was about to come back, but then it never did.)

03 June, 2010

some music spamming

This song was on United States of Tara and I thought it was The Usual (girls being adorable, you know) but then I found out what it was and once I listened to it I realized it has really good lyrics and is really catchy. I am addicted to doubletracking, personally, but I think it can sometimes be a really bad idea--the live videos are so much nicer than the recording because the incredibly usual two sets of fluttery/lacy vocals make it that much harder to tell that it's a mega good song.

It's unfortunate because the whole doubletracking, sincere, really simple tunes sung by a woman thing is actually awesome but it's getting sort of old. At the same time I sometimes feel that the idea that it's old is pretty sexist--I mean, there's a lot more music by men, so when someone is like, "oh, Marina and the Diamonds just sounds like a lot of other people," and so on, it's like...well, Marina and the Diamonds sounds like a lot less people than most male musicians do.

Like, the thing with Kimya Dawson? When I used to actually play music in front of people I knew, they would tell me I sounded like her and I'd be sort of annoyed because that's not how I think of my music and I feel like people have such a small frame of reference for female singers that just because I sing in a talky way, I automatically sound like Kimya Dawson. (The real reason I got started on that track was because of Jenny-Lewis-before-she-was-awful. Saddest sellout EVER. I mean she still sings in a talky way but--everything else sucks. And the singing isn't really as good anymore either, she's trying to fit herself into "good female singing," at least a little.


At the same time, even though I don't think Kimya Dawson is amazing (which she arguably could be, she's just not ambitious and settles for making a kind of music that I think is often small) I actually like her music a lot--or I did before everyone decided that Kimya Dawson is dumb because--I don't know, because she was in a mainstream movie, oh no.

But! Mainly! This is about Laura Veirs who I am lately really infatuated with and I think really takes the talk-singing thing to a fantastic conclusion, and doesn't just do it, like Dawson, but does it and makes it beautiful.

I mean, I have a lot of feelings about talk-singing, it's basically my religion. I should explain I don't mean necessarily that the person in question isn't singing--it's about how they pronounce words. I hate absolutely nothing more in the world than mainstream female singing where you pronounce everything with this gooey accent that doesn't sound like the way anyone would really talk. I totally admit that talk-singing is not always a more genuine expression of the way someone talks--I for example don't always pronounce words the same way when I sing that I do when I talk, but this is sort of because my singing voice is the way I would talk if I could. It's like a more intense expression. But it sounds--I don't know, I'm just really infatuated with it, even when it's really really overdramatic talking, like Conor Oberst. I get really mad when I see YouTube covers of good songs that were originally talk-sung (or at least not done in the gooey singing accent) and the 14-year-old girl or whoever has decided to do the gooey accent. NO NO NO.

Like, I know it is maybe frustrating to hear Marina and the Diamonds and Regina Spektor and everyone making such an intense effort to show everyone that they figured out interesting ways to pronounce words--but that is at least, in my opinion, an attempt at getting more directly at the heart of the words. I don't think everyone needs to be trying really hard to not do a gooey accent, some people just have nice vocal tones and they can pronounce words in a way that is just not especially gooey, like Jenny Owen Youngs. But the goo makes me so annoyed; it seems so heartless and unintellectual at the same time.

In addition to all the good reasons to hate Glee, I was also just mega frustrated by the Lea Michelle>Amber Riley fallacy they kept reinforcing in every episode, because Lea Michelle is probably the gooey-ist singer in the entire world, while Amber Riley is not some sort of anti-folk twang junkie, but does actually pronounce consonants.

For the excuse to listen to a lot of TALK-SINGING/weird-singing*, some more videos of people I mentioned above.

Pre-Kimya Dawson comments: If you don't know what this woman sounds like you are probably removed enough from pop culture that you can't possibly care about any of this and are probably wondering when I'll get around to my epic post about stuff that's actually important. But I am including this song because, from what I've heard of hers, I think it's in a way the best. I think that the way she sings and the crowded/pop-culture-reference nature of her songwriting is actually at its strongest when the subject of the song is her really dark experience with alcoholism. For her to sing this song, this way, screws with the whole idea of cuteness--that someone who sounds/talks like Kimya Dawson isn't a grownup with grownup problems--and sort of explodes that fallacy from the inside. The lyrics could be pretty triggering, even aside from the alcoholism, so keep that in mind.

*I'm afraid talk-singing is nowhere near enough broad a term to include everything I'm really talking about. I just sort of mean any kind of singing that is sharp and aggressive--and I think singing in an overly soft/gentle way, like Rose Melberg, is also aggressive.

Actually, please just read this article--Twee as Fuck: The Story of Indie Pop. I know it's Pitchfork but I read it in high school and, as the kids say, it changed my life.

01 June, 2010

About Kenny

I want to tell you about Kenny. He went to my high school, which I might somewhat flamboyantly refer to as undercover special ed--but it would be more accurate to say that it was a nominal prep school that was not at all difficult to get into, with very small classes, where no one would stop you from lying down on the floor. If you had a kid who, like me or my fake friend Joan, or like Dana or Connor, was obviously not going to cut it in an ordinary school, and if you had a certain amount of money, my school offered an option besides a school specifically for kids with disabilities/mental illnesses/a history of trouble. But there were kids who didn't have any of those things, and just hadn't been able to get into a better prep school. I feel a strange loyalty to the place, although I was incredibly lonely for my last two years due to being a sexual minority who couldn't compensate. It was probably the only school where a person like me could have had close relationships with teachers, learned to succeed academically, and been involved in theater and music; so I'm grateful for that.

During my tenth-grade year they built a new arts building and from then until I graduated that's where I spent most of my time. The whole building was carpeted and there were different hallways where I liked to sit on the floor, against the wall, and write in a notebook or read. I liked the halls in the basement, near the practice rooms, or near the room where my Latin classes were. I also liked the ground floor--I liked to wedge myself in next to the radiator, or maybe on top of the radiator, I forget, but so I could see out the window. There was an anemic field between the arts building and the main high school building, which had been built when my school had less money, and was uglier.

The Dean of Students moved to the arts building and she would let some of us hang out in her office; in twelfth grade I started spending a lot of time sleeping and doing work on her couch. That is also the year that a certain group of ninth- and tenth-grade boys, who kept their guitars in her office, would sit out by the radiator where I had spent most of my time the year before. They would play songs by Pink Floyd, the Beatles, and the Who. Kenny was one of the better guitarists and he had a haunting, pale voice, that sounded like a girl's when I was asleep.

I only spoke to Kenny a few times but he is one of the reasons I became interested in meeting other people with ASD--although he didn't say he had it, he only didn't deny. I was asking him a lot of questions one day while he played "I Can See for Miles" in the Dean's office by himself:

"Hey, do you have anything wrong with you?"


"I mean, I was wondering if you had Asperger's"

"Oh yeah, well, that."

Kenny had words he liked to use, and his face was always scrunched up in a way that looked like he was in pain. One reason I enjoyed talking to him was that I would start out just seeing the way his face looked on the surface, and thinking that he must be scared, or concentrating, or something; but then I could almost see through the surface of his face, and see that he had all kinds of feelings like everyone else. And then also, of course, the more Kenny played, the more his hands scrambled along the fretboard, the more his face loosened up.

Kenny was a nice kid but what I have to say isn't really about Kenny; it's about Mrs. C., the chorus teacher, and it's about the other boys who played guitar. Kenny was just himself. The words he used were the words that the boys who played guitar would say with him, in between songs. It's about all the kids who were in chorus, because--well, I have to explain about Kenny's stimming. Kenny played a lot of instruments, although I'm pretty sure he stimmed more instruments than he played. What I mean is that while Kenny flapped and stuff, the major things he did with his hands when they were not on a real-life guitar or piano were to manically play imaginary guitars, pianos, basses, violas, and saxophones. The saxophone was the one that got the most positive response, when Kenny got so explosive in chorus one day that no other instrument was good enough and he raised his hands to his face and pressed with stunning accuracy the invisible keys, and blew. The kids in chorus came close to applauding, while Mrs. C. laughed delightedly.

Before you ask, I know what it is like when people are laughing at the way someone moves. That is not what this was. Kenny's words, his stim-instruments, and his more standard flapping and jumping were considered interesting, impressive, and cool. They were not "meaningless repetitive behaviors"--everyone could see what they were about. Backstage before a performance, Kenny flapped at the people around him and we indicated we were nervous, and excitable, too.

Not everyone gets what Kenny got--I didn't get what Kenny got, and I had the same disability at the same school--but I still like thinking about him and explaining it to myself. I think this is pretty much a beacon of how things can be, proof that a person who's different can be seamlessly integrated into the whole without smashing himself into a normal shape, and without anyone else thinking they're doing him a favor. No one was doing Kenny a favor; Kenny was awesome.

One time Kenny did Mrs. C. a favor. He and a few of the other boys were going to sing a special song in the spring concert--I think it was "My Girl," something with very close harmony. It was a small school, meaning teachers did what they could with the talent they had, and I'm guessing Kenny with his incredible precision was going to be the rock who stayed in place when other boys muddled up and down. Kenny's singing was accompanied always by, at the very least, very stiff, sharp, tall conducting movements, his hands pinched together like beaks. At the very least. On the day of the last rehearsal, Mrs. C. said, "Kenny--for the actual concert, can you tone it down? Can you keep it in?" Kenny agreed. Whenever someone tries to explain to me that people make fun of kids who stim in public, as a way of proving that such and such ableist and abusive policy is okay...I just want to show those people Mrs. C.

Mrs. C. liked Kenny's stimming.

She knew that he had to do it.

She didn't think he did it to be annoying or to make people laugh or to get attention. At the same time, if people did laugh or pay attention, she didn't think that was inappropriate; Kenny's stimming wasn't an embarrassment, it was cool.

Mrs. C. knew that some parents would be distracted by Kenny's stimming and that it wasn't part of what was considered to be appropriate behavior for a concert. So she asked Kenny not to do it--in a way that made it obvious he was doing something difficult as a favor to everyone else, not in a way that implied this was a reasonable thing to expect from him all the time.

Kenny worked hard; he sang well and stayed still for the whole set of songs and then he and his friends dashed to their seats, coming down from the risers; Kenny was grinning at his friends, rolling his eyes to show how exhausted he was, wringing the hell out of his hands.