the spirit of the staircase

is the word for really good things to say that you think of when it's slightly too late. Recently I had some in my child developmental disabilities class. I obviously need a tag for this class, but anyway.

The first one wasn't really a lack of something to say, I just spaced and didn't get to make an answer that would have been very easy. Basically the professor asked a question which assumed that no one in the class had autism. This is rude, since she knows I have autism, so I would have liked to respond gently and politely to the question, from my own personal experience.

The second one I just couldn't think fast enough though. We watched a movie about autism which was mainly parents and professionals, but at one point Temple Grandin appeared and spoke in the movie. I don't really like her, but anyway. After we watched the movie, my professor said something like, "Can you see how Temple Grandin's communication [or social skills or social reciprocity or something, I forget] is lacking?"

I said, "Well, we can't really tell from the movie, because we don't see her talking to anyone else, we just see her talking to the camera."

"Really?" my professor said, in an amused way. "You couldn't tell that she was different?"

My friend said, "Well, we know that she has an autism spectrum disorder, so it's hard to tell if we would know if we just saw her."

The professor said, "Speaking as a clinician, you can...well, everyone always laughs when I say this, but there's a certain smell--not a literal smell, but you can just tell when someone's autistic. Come on, let's talk about it. What is missing from Temple Grandin?"

But what I would have liked to say, when my professor said, "What, you couldn't tell that she was different?" would not have been mean or anything, but just low-key. I think that a lot of the time, just insisting on saying what you actually experience and think in an environment that is really marginalizing can be a pretty violent form of rebellion even if you are talking slowly and not being harsh to anyone. So, I would have said:

"Well, it's true that there's sort of a constellation of physical actions, like stimming and toe-walking and maybe including voice and facial expressions...well, it's like a type of body language that I click into really well and it feels really familiar. So that's how I can sense when someone else is disabled. But that doesn't really have to do with anything being 'missing' from Temple Grandin because I don't know enough about her life to know what she can't do."

And this part is for fun and isn't what I would have actually said, because it gets kind of shrill, but I'll just type it up for posterity (this is the spirit of a really long staircase):

"Besides, I don't really think of disabled people as missing anything and I feel weird about watching videos of an adult who seems satisfied with her life and trying to say what she's 'missing.' I mean, is that what you think about me when I'm talking? That's not how I feel about myself. As far as I know I'm the only person in this class with a significant disability--and by significant I don't necessarily mean severe, I just mean it affects my life at all times and in all places, and it's lifelong. So I mean I've always lived with it, and that's just not how I feel about disability. It doesn't make me uncomfortable and I don't think it's sad. When I see other disabled people I feel like, 'Oh cool, another disabled person'--I don't feel like something is missing. I love my friends with disabilities and I love the kids with disabilities I'm working with right now. They're swell people. [I don't really say swell as much as I'd like to.] Sure I can identify a lot of disabled people on sight because there are particular ways of moving that are more common for disabled people--but it's not because they don't have something that other people have, we just look different from them."

(As is usually the case, Amanda Baggs wrote a much better post about this sort of thing.)

No, no, no, no, no

I don't know what to say, you guys. Once a week I'm going to get to go into a school and hang out with kids who can't talk and can't do some other stuff. I guess I'm glad that I know some people who can talk, because talking can be fun, but sometimes I feel like the ratio in my life is a little too biased towards people who can talk, and I'd like to have more people who can't talk, or at least talk differently. The more I think about the kids I met on Thursday who can't talk, the more excited I am for my summer job where I'm going to spend a huge amount of time with people who talk differently or can't talk! And do other kinds of stuff that I think is interesting.

I think I'm not a very good person and I've felt this way for a long time. I think that it's helpful for me to be around people who don't do some of the things that we sometimes incorrectly assume everyone does, that we sometimes assume are part of being a person. This isn't some Lovaas shit, never fear; it's awesome because they are people, because it reminds me of how stupid and fallacious my concepts of existence are. Also, I invariably get reminded of how arrogant and blinkered I can be, when I make some assumption about how much a person can do or understand...and then they do the thing I thought they couldn't do! Which is wonderful. It's amazing to feel so happy about being proven to be a jerk, and I feel like it's sort of the essence of being Christian, or being the kind of person I want to be.

Being with people who don't pass for nondisabled is exciting because I don't have to worry as much about passing, and can sometimes even experiment with trying to go in the opposite direction, to see if the person responds to stimminess and stuff. Overall, it just feels sometimes like a much better, deeper way of being with people, better than the way I feel about being with anyone normal, except my really good friends.

So, I am really prone to flip a shit when I hear or read anything that seems insulting to people who are more severely disabled than people with an Asperger's Syndrome diagnosis. I try to be nice but it's really hard to worry about being nice to the person I'm talking to when everything they're saying seems either like it's mean to more severely disabled people, or like it's trying to erase them. I don't see Michael John Carley, Temple Grandin, et. al, as people who just have a different opinion that I should respect. Because if everyone's being so respectful, where the fuck is the respect for people who can't talk and wear diapers? Talking about respect just implies a world where everyone can do those things, where the only people being insulted are hypothetical. That is not the world I live in, or even want to live in.

Feo means ugly in Spanish

so I previously mentioned my unfortunate tendency to sincerely like things that you're supposed to like ironically. The worst result of this is probably my love for Cute is What We Aim For, which is this incredibly AutoTuned band for 14-year-old girls that features the ugliest man ever singing about how he hates women. I'm not kidding. Listen to this song that I accidentally covered BECAUSE I CAN'T HELP IT:



I feel sort of anxious because even though I think my cover is rad, I'm afraid of all the 14-year-olds on YouTube finding it and being really mean to me and telling me I'm ugly and stuff. Sometimes when I was 14, boys would come up to me and say, "Feo you!" the way you'd say, "Fuck you." The only Temple Grandin quote I agree with is about seeing groups of teenage boys hanging out at gas stations and being so freaked out you don't even want to get out of the car.

but seriously, this is the catchiest song EVER? and I'm from a commuter town so I'm bound to like it. Not my fault.

Ohhh buddy

Temple Grandin Talks About Her Upcoming HBO Biophic

A world-renowned designer of livestock handling facilities, a professor of animal science at Colorado State University, and one of the world’s highest functioning autistics, the most recent chapter of her life is being written right now, or filmed to be more specific, in Austin, TX.

The grammar is annoying--the most recent chapter of Temple Grandin's life is a world-renowned designer of livestock handling facilities? How can a chapter be a designer?--but all in all, this is a pretty exciting sentence because it means that I'm like the most high-functioning autistic person ever, because I'm definitely higher-functioning than Temple Grandin. Actually that's a messed-up thing to say, because I think you should judge functioning by ability to carry out goals and not by passing, but by a conventional definition of functioning, totally, I win. And okay maybe they mean she's one of the highest-functioning people with Autistic Disorder--but I know people with Autistic Disorder who are conventionally higher-functioning than her. What the hell do they mean by higher-functioning? Oh right, they just mean that she's really accomplished.

What? I mean, when someone is writing an article about a regular person who accomplished something, do they call the regular person "one of the highest-functioning regular people?"

Unlike some people (or maybe I'm doing a strawman, I don't know), I do think there's a value to functioning levels. It is fucked up for me to go around acting like I know how things are for a nonverbal person, or a person who has more severe social disability than I do, or a person with an intellectual disability. I really don't like the queer/trans community (oh no not again!) because bisexual=/=gay and queer when your parents are liberal=/=queer when your dad is Alan Keyes and genderqueer=/=binary trans etc., and I think there are definitely instances of people who completely lack understanding of how hard stuff is for other people and just want everything to be an adorable melting pot. (I could go into more detail, but remember this is the stuff that makes me depressed.) But randomly messing around with what "functioning levels" means and making it mean eleven different things is not actually helpful to anyone.

In Mere Christianity, CS Lewis has a chapter where he talks about sin and goodness as it relates to a person's psychological makeup. He says that you can't tell from the outside what God thinks of a person because you can't tell how hard a person is working. He uses the example of a person who's terrified of cats picking up a cat for a really good reason. From the outside you might not be able to tell what a good thing they're doing. I guess I think it's important to keep this in mind when you're looking at pwds (or anyone, actually). You don't really know how hard someone is fighting against their impairments, and you definitely shouldn't decide that someone doesn't actually have impairments because they seem to be doing okay.

So I guess it's hard to identify severity because some people might fight their severity better than others. Or do a better job fighting because they have more support--maybe people only ever fight well because they have support. But I think that identifying severity matters, anyway. We should know how much of a force ASD is exerting on a person, right? Although in the end, I don't know if the force ends up equaling the severity, or if it's the end result. Like, the force of ASD minus how well the person does.

But if we're just going to identify someone as high-functioning because they're a brilliant scientist, regardless of what their ASD is actually like, then I don't see the point of going on about functioning levels at all.

ASD Savants/Disability Redemption transcript

Hey, so I wanted to talk about the idea of redemption--I'm not trying to convert you to Christianity, it's a completely different kind of redemption. I think the idea of redemption is around in the conversation about Asperger's and high-functioning autism. And what I mean by redemption is the idea that if someone has a disability, if they're good at something else, it's okay that they have a disability.

And the kind of things you can be good at, it's a very narrow thing, it's the kind of things that are considered to be good by, like, intellectuals or something. Or I shouldn't say that--like, let's say you're really good at playing soccer, that would probably be okay. Or if you're really good at killing cows, or music criticism. Anything like that. If you have an ASD but you're good at something like that, then it's okay that you have an ASD, and you shouldn't even call it a disability, because all the trouble that you take up is canceled out by the fact that you do such and such good thing.

Well, this just isn't a point of view that I want to be part of, because I think it's kind of messed up and offensive. And the whole idea that people who take extra work to take care of, or people who have a disability--even people who are just kind of different and need a different thing from the world--we live in a culture that sees that as such an awful thing, like such people are such a huge burden and you should be really freaked out about them. And into the middle of that come people like Temple Grandin who will try to argue that people with Asperger's and HFA are, like, super special smart at certain things, and because of that, it's not really a disability, or it's okay, or "a dash of autism creates a genius" or whatever stupid recipe thing she's been saying lately--I just think that's really ableist. If you think, "well, it's okay to have this, because it creates a genius"--I mean, the whole idea that being a genius is such an important and valuable thing--well, it's not the most important thing in life and that's not the only kind of valuable people that there are.

It's weird for me, because I guess I'm a "high-functioning" person, but really, the reason I think of myself as a high-functioning person is just because people don't perceive me as having a disability most of the time. But it's funny because I don't feel that I'm a genius or that anyone perceives me that way. I definitely don't feel like a fucking savant--I mean, I'm good at some things, but it's not anything big, and I think when people meet me, there's very little sense of me being a genius--I mean, to the extent that anyone thinks anything about me in terms of disability or difference, it's probably that I'm kind of out of it, or that I seem like kind of an asshole, or just that I'm kind of stupid. So I don't relate to the genius thing. I guess I relate more to people who are intellectually disabled, because I feel like people give them the same kind of impatience and weird looks that they give me.

So those are the people that I feel the closest to, and it's upsetting to see other Asperger's people, like, throw intellectually disabled people under the bus--I just see so much writing by people with Asperger's, who if they see themselves grouped with people who are 'retarded,' they'll be like, "Oh, I'm not retarded, it's not the same thing, people think it's the same thing!" and it's like, okay buddy, it's not exactly the same thing, but there's some overlap, just calm down, there are similar things about the way retarded and autistic people move, and the way we sometimes process things, and the way people treat us.

Like, okay, I get that it's not exactly the same thing, but don't fall all over yourself trying to distance yourself from another group of people with a disability because it just makes you look like an asshole. And I really feel like this idea that people with ASDs are valuable only as long as we have these particular amazing talents is just kind of bad in the long run. And I feel bad when I think about any particular person who's achieved some measure of success because they're seen as being so super talented and their ASD is some adorable quirk because they're so talented it's okay--what if that person goes through something really bad and their speech kind of shuts down? Or, like, I used to be really good at reading and now I have a lot of trouble reading--that skill is just not really there for me anymore. And, if you've spent so much time arguing that you're okay because you're so good at such and such, what do you do if you stop being good at such and such? What does that make you? Does it make you not okay anymore?

I don't think that it does. I don't think anybody should have to redeem themselves for their disability by being a genius, you know?

I think people can act like this with all kinds of minority groups that make them uncomfortable. I mean, you can see it so much in Queer Eye for the Straight Guy--the whole fact that all the gay guys in public and on television are guys who have these particular skills that are supposed to be useful for straight people (I know, and they don't have any lesbians because we're not good at anything, I guess) but it's just like, they're trying to say, "Look, you have to accept gay guys--yeah, they're gay, and it's weird, but look at this other stuff they can do! Look how they can help YOU!" and it's like, why do you have to be so fucking selfish and think that other people only matter if they can contribute something in a way that you think is an appropriate way to contribute? I mean, what's wrong with someone being just a regular gay person who's kind of mediocre? You'd be okay with a straight person being mediocre.

And like, the average nondisabled person that I meet, I don't usually think that they're super great and they're going to cure cancer or something, but all of the sudden you're supposed to think that people with Asperger's are okay but a person with Down Syndrome isn't okay because a person with Asperger's might cure cancer?

Kind of stupid, and also, most of the time, not true. Lots of people with Asperger's, like me for example, are pretty dumb, not particularly great at anything, and I don't think that affects my value as a human one bit. That's all. I just wish that people wouldn't talk about ASDs this way, because I feel that while it may enhance the social status of a small group of people with ASDs who have special talents, it really insults and hurts a lot of other people with disabilities, and in the long run can even have a negative affect on the people who are considered to be savants.

Like me

Today is the first day after the last day of classes and I know I should start studying for exams but I'm really sick and have just been eating and watching YouTube videos in my room. But it was my turn to take out the recycling, and I also ran out of contact fluid a month ago, which means--well, if you're a lazy person who has contacts, you know what it means. It's gross. So finally at six o'clock I actually went outside, put the recycling in a bin, and went to a convenience store. I wandered around spacily before accepting defeat and asking the cashier if they had contact fluid. He said yes and came out from behind the counter to show me where it was.

My first thought was that he must be incredibly tired; he moved very stiffly and had a blank look on his face. He pointed to the contact fluid and went back to his register. I picked out a container of contact fluid and a Diet Coke, and brought them to the register. He was leaning over something, but soon sat up and rang up my things. There was just something slow and distant about him. I got the impression he was from another country, and wondered if that was why he seemed strange to me. Then I thought, maybe he's "like me." When he gave me my change, I said, "Thank you so much," and smiled, and he suddenly smiled too, in a way that struck me as unusually sincere.

I could be wrong, of course. But it would explain how he said almost nothing, and his unusual physical quality and lack of facial expression. By the way, when I say "like me," I mean I read him as (possibly) an intellectually disabled guy who takes a minute to make transitions and was concentrating on doing everything right. It's interesting that I used the phrase "like me" in my head, since I don't have an intellectual disability.

I think the thing is that I don't necessarily relate well to other people who have Asperger's, and I don't identify with the stereotype of Asperger's at all. I feel too solicitous, too gentle, too spacey, and too slow to be a stereotypical person with Asperger's. I'm good at some things and internally I feel really smart, but I come off as a lot dumber than I am and no one would ever call me a genius or an expert on anything. I don't talk formally and at length; I talk in an unusually simple way. I feel like the defining qualities of my character (however poorly practiced) are exuberance and love. Whenever I read or see anything about Temple Grandin, or most other famous ASD people, my immediate reaction is that they seem like kind of a jerk and not someone I have anything in common with. I feel everything too much and the stereotypical AS person doesn't feel anything, except some very cool austere attachment to engines or something like that.

I guess I should be disclaimering all over the place and say that I know very few people who have ASDs, especially in real life. I know a lot more intellectually disabled people so maybe that's why I've gotten this impression that they're "like me" in terms of personality and relating to people--I know more ID people in general, so of course I know more ID people who I have a connection with, and maybe the thought of those particular people is dominating how I think about all the ID people I know. But I can't think of a single intellectually disabled person who I dislike as much as I dislike Temple Grandin.

I feel like I don't have stereotypical Asperger's social problems. When I need to explain my struggles to people, saying I have Asperger's is the last thing I would do; I'd say I'm spacey or young for my age. I usually say I'm young for my age. Because I get lost easily and talk in a simple way and get excited and have trouble figuring out how to do things. The Asperger's stereotype doesn't tie in all that well with what my obstacles in life actually are.

Now that I've written this, I feel like a jerk, because I know it's probably not true that most Asperger's people are these cold, superintelligent beings. In fact, when I try to be systematic about it, I have met Asperger's and HFA people who were of the sweet, excitable type. But there really are lots of people on the Internet who say they don't want friends, don't like fiction, etc. and go on the "I GOT A 5 ON THE BC CALCULUS EXAM, STOP LUMPING ME IN WITH RETARDED PEOPLE" spiel. I just feel weird because, like--I feel like I should expect people with Asperger's to get my jokes, or something. But they don't. The order in which people are most likely to get my jokes are: 1. Intellectually disabled people 2. Regular people 3. ASD people.

Doesn't that strike you as odd?