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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.

this is a transcript, obviously

Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."

Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.

So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.

Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]

...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...

I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.

I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.

I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."

I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.

But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.

Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?

But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?

I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.

fictional characters

who strike me as having ASD and/or who I identify with as an ASD person without actually thinking that they have an ASD.

1. MAD MEN of course has Pete and Peggy, who pass in different ways, who compensate in different ways, who "improve" in different ways and are attracted and repulsed by each other for precisely that reason.

2. HARRY POTTER--Luna in a conventional way (i.e. she strikes me as actually having ASD). She was the first person I was exposed to that dumb conversation about, because Luna said something nice to Harry one time and real ASD people don't ever say anything nice or helpful, according to the people in that conversation. Also, Luna dresses weirdly because she likes to, while real ASD people dress weirdly because they don't know any better. Tiresome, because she's actually perfect as a realistic example of an ASD person, and I wish more intentionally ASD characters were like her.

I don't really think Neville has ASD, but he is my favorite character and it's easy to identify with the way life is a battle for him while he's in school. There's a really good fic, Night-blooming Heartsease, which really powerfully articulates the kind of determination I had to develop as a teenager--and yeah okay, it's slash, and has a pairing that squicks a lot of people out, but seriously, just read it anyway, you won't even care it's that good.

3. ARRESTED DEVELOPMENT--Buster of course! His impairments are probably caused by his upbringing and not something neurological, but I've always found him easy to relate to. For a while it was easiest to just explain myself by saying, "I'm young for my age." Although I don't have all the trouble with things like taking buses that I used to have (not as much, anyway), I used to just tell people, "Yeah, so I'm basically the real-life Buster Bluth." It made things a lot easier. I think that Tony Hale makes some acting choices, in terms of mannerisms, that make Buster read as someone with a developmental disability, but I don't know if this was a conscious decision.

4. FIREFLY--River Tam, especially in "Objects in Space." Again I don't think she is really ASD, but I love the message of that episode, which to me is about how the crew try to judge River's sanity and morality based on the things she does that they read as "crazy" or "odd," like picking up the gun, or having (in Kaylee's eyes) the wrong kind of affect after shooting people. She doesn't see context, she just sees objects in space. Then we have Jubal Early who also doesn't see context but is completely different--River sees guns as pretty objects, and Early sees "ordinary" objects as weapons, he sees the cheerfully, guilelessly sexual Kaylee as someone he can cow with the threat of rape. So I think the story is supposed to be, context-blindness and being evil or unstable are not the same thing. River is odd and good.

5. SPACED--Brian! I really love him because usually when you are diagnosing fictional characters, you have to go on social interaction alone, but Brian actually has the mannerisms and postures of an ASD person. Well, this ASD person, anyway. And like Luna and River and Buster, he is a good person, just different, which is nice to see.

I'm sure I'm forgetting someone. A lot of people, actually. But whatever.