30 November, 2010

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.)

29 November, 2010

I have to stop

I just get really angry sometimes. And it's about all the same old stuff.

But I just can't handle the high-functioning/low-functioning thing, not now, not ever. And I don't really have to, often, because this is a pretty small blog and most of the people I am in contact with as a result are people with autism-ish disabilities, or people who get it. But sometimes I end up reading comments from people like Harold Doherty and I just...I can't do it. It just is too much.

Partly this is because--I mean, if you read my stuff you know that sometimes I have thought a lot about killing myself or hurting myself. Sometimes I've had to sort of disappear from myself because things are so hard. I have a lot of brain problems. And right now I get the privilege of being close with a lot of people, but this feels like a privilege because I used to be very much alone. But the social stuff is the least of it. Cognitively, and emotionally, a lot of things are unbearable sometimes.

And I just seriously can't handle these characterizations of "the kind of people with autism who don't want a cure" as being a person who isn't really affected and thinks everything is great. People who say those things don't live my life. Usually, they don't live any kind of disabled life. They don't understand that a person can be very taxed and still usually want to live. They don't understand that a person can want to die, but still think that a cure isn't the only solution to feeling that way.

I hate having to always pull this out, because really anyone should assume that people who are involved in anti-ableism know people with severe disabilities--but I know people with severe disabilities, mostly through being staff for them and volunteering with them (which is a weakness, I'd like to get to know more severely disabled people through self-advocacy and in my everyday life). And...it's not any different, when it comes down to life. They're not tragic people. Most people have the equivalent of what I was talking about the other day, when I was talking about wanting to die. People have things that move them through life, things that are special to them.

Some people with severe disabilities, like people with mild and moderate and whatever you want to call it disabilities, are very lonely and very sad and are not getting the help they need. This is a tragedy. But we, disabled people, are still not the tragedy.

I really can't handle, with how much stuff hurts sometimes, seeing people like me characterized as not really having any problems and not really being affected by disability. Things are really bad and people who are invested in the tragedy model of disability will never be empathetic enough to understand how bad things are, because I don't consider myself a tragedy and therefore I must not be suffering ever.

One problem with this whole way of thinking, this division, is that it makes all my suffering and all my hard work meaningless. These people think that if you do something that people with autism aren't supposed to be able to do, then it's just because you don't really have autism. This is one of the attitudes that most makes me want to kill myself, because I know that even if I work really hard and accomplish a lot, no one will respect me for this because they will just see me reaching a level that a person without autism could reach, and refuse to believe that I'm not just a normal (or normal enough) person operating at my base level. Sometimes it feels like there's no motivation for me to do anything.

The last problem is just that one of the people that Doherty et. al. most like to use as an example of someone who has a really easy time is one of my best friends and is the only thing that keeps me going sometimes. I know that my friend is not a person who is unaffected by disability. He is probably the epitome of someone who is working way beyond their means, and he pays for this all the time. I love and respect him for doing this to himself, and I feel that even if someone doesn't agree with his work, they should respect him for how hard he works to do it.

But they don't, they don't, they don't, and that breaks my heart (because I'm easy, I guess, kind of soft), and it just makes me, more than anything, sad to read what these people have to say. It gives me a sense of being erased and thrown away, of being completely nothing. I really don't know what they want from us--if we all just laid down and died, would they believe that we're really disabled, or would they just change their definition of what disability is?

26 November, 2010

more thoughts about zombies

it's considered not just self-defense, but actually brave and an act of compassion to kill family members and friends who have become zombies. Not being able to kill them is a sign of being too sentimental.

Why is it compassionate to kill a zombie?

Because they look different?

Because they can't think very well?

Because they're chasing and eating people, something their old self wouldn't have wanted to do?

Because they're presumably constantly hungry, which wouldn't be a pleasant experience, I guess?

I mean, I think it's fine to kill someone who is trying to eat you, but I'm curious about the compassion angle, the idea that If You Really Love Someone, you won't let them live as a zombie.

24 November, 2010

Still. Life.

Yesterday morning I was driving my friend's car crying and asking for God to kill me.

When I went to bed I felt okay. One of my best friends, who lives in Washington State, is here for Thanksgiving, and so is Liam (my housemate)'s sister.

At about twelve or one when I was back from driving the car, Liam and his sister asked me to go to lunch with them. I had just started dyeing my hair but they waited for me and I remembered thinking, it just keeps going. Sooner or later, someone will be waiting for you, sooner or later there will be a new episode of The Walking Dead and you will be curled up watching it with some kind of soda or juice.

I find half-full packs of cigarettes in the park. I go to a college that has electric typewriters and an art library full of my favorite comics from when I was a kid. Liam worries about me and wanders in to ask if I want to watch David Blaine Street Magic for the hundredth time.

(I ask what he can possibly still get out of it but he says, "Now I notice little things.")

When I was waiting to wash the dye out of my hair so I could go with Liam and Jodie, I sent my friend a text: "Is it brave to go on living if you don't have anything you can do?" And I do wonder about this. I am not a depressed person, but sometimes it seems reasonable to think that stopping everything would be better. It's more a tactical decision than an emotional one.

Recently I read a quote about how if you're disabled you have to learn to be a human being and not "a human doing." I see what this means, but I guess I find it really inadequate--I mean, other people would not accept me as a being; if I completely collapsed and only wanted to experience good things, it would just be seen as laziness, depression, or a triumph of disability--a sad story. I have to stay in the doing frame because being from me would be unacceptable.

But I'm just trying to say I am, I am, I am, anyway.

22 November, 2010

oh yeah so part two--on being vicious about yourself

So my former professor and advisor, Phyllis, has ADHD or something like that. She was a very nice person to have a professor partly because she would always do things like losing her coat when we moved to a different classroom, scheduling meetings and forgetting to keep them, sending emails saying "here's your assignment" but forgetting to include the attachment.

I feel so lucky to have met her because at the same time I was in her class, I was in another class with a professor who hated my guts. These are some explanations he gave to me and other students in the class:

I was "really weird"
I didn't use body language that made me look interested in class
I forgot to turn in a paper once (I had done it and brought it to class; I literally forgot to turn it in)
I was late to the first class because I misremembered when it started
I talked as if I hadn't done the reading (for the record I don't talk about reading I haven't done; I'm not...there I go again)

I would have ended up feeling like I deserved all this just because I had on two occasions forgotten to do things--not because I didn't care about class but simply because my working memory is super poor. But Phyllis's class was a place where I could feel safe. Phyllis cared a ton about her subject and her students, but she forgot to do things. Her class was a place where it was understood that a person can work hard and care, but sometimes not be able to do what's expected.

She is the only professor I've ever become friends with and I still see her sometimes even though she's retired.

Anyway, the last time I saw her she told me out of the blue, "One time you wrote me an email that said, 'I'm so stupid, I forgot to do this.' And I thought that was wonderful! It was so freeing! Now I started saying, 'I'm so stupid.'"

I was really interested that Phyllis said this because usually I feel under a lot of pressure from non-disabled people to avoid saying things like, "Sorry," and "I'm stupid." Like, I guess that people think they're being nice, but it just feels like they're trying to silence you. For someone like me who feels really required to check that I'm doing things properly, if someone just tells me something like what my boss told me this summer--"The only problem with you is that you keep thinking you're doing something wrong and it makes me sad!"--that makes me feel like the person would rather I handle any anxiety or guilt completely on my own, which makes it much worse, rather than making it visible to them by asking them if I'm doing something wrong or apologizing for real or perceived mistakes.

yeah so I want to use the r-word in a story I'm writing

and I'm going to use it in this post so be warned.

I'm not actually going to use it in the story I turn in to my workshop, because last time I turned in a draft of this story it was the most awful experience ever. Basically I wrote a story about a 12-year-old boy who goes to a behaviorist school for kids with autism (but no disability-related words are used in the story, because no one has outright told him he's disabled). The boy is obsessed with lions and with the idea that he's slowly turning into a lion and will grow up to be one; his parents and teachers try to discourage his interest. He also has a lot of meltdowns and the story ends with him having a violent, swearing meltdown at school and having all his lion paraphernalia taken away as punishment.

So, everyone in my class got exactly that out of the story. A disabled kid doesn't understand he's disabled and can't control himself. (Some of them also made comments that outright assumed I wasn't disabled.) What I turned in was a really rough draft but I felt really positive about the germ of the story, and I felt depressed because almost no one reacted to it or related to it at all.

I sent the story to some of my friends who are good on disability stuff and asked them what they made of it. They got out a lot of the things I was putting in: the main character is faced with adults who try to control him, while his non-disabled twin is more wholly nurtured and accepted; identifying with lions is a way of feeling powerful and dealing with the fact that he feels like he's not human. My friend Laura wrote, "it seemed like he loved this thing/lions and nobody understands that it's something to just love and so they try to make it out to be a problem and to use it to get him to behave how they want him to... i think it seemed like a lot of it was about behavior modification and the loneliness of being told to act a certain way when you're just not naturally inclined to."

Which made me love her so much. I know it's only a workshop, but I've been in workshops for years, you know, and I've never had one hurt before.

I'm trying to write a more clear-to-my-class version of the story and the way I'm doing that is by having most of the story take place when the main character, S., is 17. The point of doing this is that by this age he would be aware of his diagnosis and stuff (in the original draft, I was trying to show that he hadn't been told about his diagnosis, but still sensed how he was being treated; but I think people just took it as typical "disabled person doesn't understand" stuff). It is also cool though because I get to address some issues of passing as ethics and passing as cure. I'm having trouble writing the story because I want S. to express his resentment of the way he was treated when he was a kid, but he's very isolated and doesn't have a lot of people he can talk about those things to. And he's also not quite sure how he feels about a lot of it.

But anyway, S. has been in a mainstream school for four or five years, and his main activity is selling his medication and making drugs for people. (The story has some magic realism elements so he's invented his own drug.) He finds this comforting, probably because he has something that other people want; he frequently accepts little or no payment even when he could ask for a lot of money. It's just what he does.

S.'s parents don't know about this and see him as a success. S. realizes that his mom has started referring to him and his sister as "the twins" when she never referred to them as a unit before. There is some anxiety about how S. is going to apply to college because his years in special ed may make him look "unstable" or like he's not capable of doing college work. But overall he has a sense of finally being someone his parents can be proud of. He goes to a normal school, he looks normal, he acts normal (with the kids he gives drugs to, he's intentionally weird and cold, and they see him as a creep; but he sort of likes that, because he's controlling their view of him).

But he is, you know, pretty masochistic with the whole throwing away opportunities to make money thing. And he doesn't really have any friends.

He desperately misses his best friend from special ed, but his friend is on a completely different life trajectory; he's still quite visibly disabled and needs help doing things. S. has no idea of what a friendship between them would look like now that one of them is supposedly normal. When he runs into his old friend, he lies to his friend's staff about how they know each other.

S. meets up with the head of his old school, and is overwhelmed by memories of trying to bite her, having her analyze and remake the way he walked, having her snap at him and take away his lions--but she's completely friendly, as if they are family members or old neighbors. S. falls into compliance, finds himself following her lead, trying to make himself sound even more successful than she already thinks he is. Wants to ask her why she cared how he walked or what was wrong with lions, but those kinds of questions don't belong in her world. He feels stupid even thinking them.

S.'s twin R., who is in boarding school and isn't around much, is the only person he's really close to. She's always known him roughly the way he is and when she comes home for Christmas he manages to tell her some of the things he's thinking about.

Anyway, for some reason I have this scene in my head: S. makes some comment about how he now looks normal. R. says, thinking nothing of it, that he doesn't. S. is really offended and scared. R. says that S. doesn't look normal to her because he's her brother, he just looks like her brother. And besides, he always says he doesn't want people to like him anyway, so it doesn't matter if he looks normal, right?

"That's retarded," S. says. "That's a retarded thing to say."

Now, the reason I won't really put this in my story is because I think people in my class may just throw this word around in their lives without thinking of it as hate speech. And I want S. to use it as hate speech. I will explain.

I feel a very intense urge sometimes to use the word about myself. Usually in some kind of school or work situation where someone is patronizing me or has failed to understand the nature of what I can and can't do. The sentence I want to say comes in two forms:

"I'm not retarded," when someone is explaining something they think I don't understand. And, more commonly:

"Yeah, I'm retarded, sorry" (little laugh)

because when things are really hard and someone is obviously kind of annoyed with you or thinks you're lazy or lacking insight/knowledge about basic things, you just...hate yourself. And them. And you're supposed to say, "yeah, I'm sort of slow, sorry," "oh yeah I'm kind of a space cadet." Like it's something small, and cute.

But it's not fucking small.

The word retarded is the most vicious word I can think of to quietly and passively explain myself. The reason I find myself wanting to use it is because it feels almost on the level of physically hurting myself or the other person, which are things I do not believe in doing (well the first one happens sometimes). And it doesn't seem like such a big deal to most people to say that word. But to me it feels like punching myself in the head, and sometimes I want to feel that way.

from Ragged Edge Magazine May/June 1999

Playing Cards at Boston Children's Hospital by Lisa Blumberg was linked in a blog I was looking at and it's a really good and important piece. It made me really upset to read it.

It was striking to me how much I related as an Autistic person to the professional attitudes that Blumberg experienced, since she has cerebral palsy and no mind disabilities. I'm kind of leery about doing this because I don't want to give the impression of appropriating someone else's very different experience, but I want to quote some of the lines that really resonated with me:

Once Matty [her physical therapist] watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."

I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words...

When Blumberg was in her first year of college, a doctor spent months pressuring her and her mother to agree to a surgery that involved cutting into Blumberg's muscles, even though Blumberg really, really didn't want it. The doctor constantly told them that if she didn't get the surgery, her hips would dislocate by the time she was forty (then he kept lowering the age at which this would supposedly happen). As an adult, she found out that there was no way this would have happened before she was very old.

By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement...Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.

Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.

... Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.

At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."

No one had told me. I had not been playing with a full deck.

"Why did he do it?" I screamed.

"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."

So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.

...By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.

Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.

I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this...It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man.

(emphasis mine)

20 November, 2010

how an autism spectrum disability affects my life now

[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.


Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.

Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.

Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.

Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.

Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.

Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...

It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.

Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.

I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.

But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.

Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.

Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.

18 November, 2010

I hope someone remembers you

[sometimes I feel like it might seem like attention-seeking to post stuff like this. I do tend to write stuff whenever I'm upset and then finish it later, so just because I post songs like this doesn't mean that whatever it's about is going on now. It isn't in this case.]

If I could just kill half of you and leave the other half alive
so you could walk around and take phone calls but have nothing left to hide
because I'm too responsible to want to destroy your mind
but I'd do it, I'd do it every day if I could

My hands are shaking from nicotine and I like myself that way
so I can walk around and make phone calls and fall down at the end of the day
I can barely write out sentences and you can struggle to read what they say
because I mumble and you can't hear me most of the time

And I hope someone remembers you

I can get dressed and start a mess but there's nothing left to see
and when morning comes they'll find me trampling through the leaves
and maybe someone will call you up but they won't know how to explain
and they'll stutter, they'll stumble on their words from now on

If I was your Secret-Keeper I'd tell everyone where you are
You're smart enough that you'd figure it out and run away but you wouldn't get far
They'd come to your house, they'd take you apart and sell your insides for scrap metal
but you won't die, you don't die most of the time

And I hope someone remembers me most of the time

15 November, 2010

On Shambling

I had the creepiest dream about zombies, you guys. They were pretty out of it, but they could talk so even though you could tell by looking at them that they were dead a lot of people wouldn't read them as zombies. I got on one of those really big elevators with a guy my age and his little son, and then this older guy started to get on who I knew was a zombie. I told the guy my age not to let the guy on the elevator, and he ineffectively tried to stop him but he got on anyway. The whole time we were on this elevator, I was telling the zombie to stay on the other side of the elevator, and picking up this folding chair that was in the elevator and threatening to smash his head. By the time we got to my level (we were in a parking garage) the living guy in the elevator obviously thought there was something wrong with me because I was being so aggressive and rude to this other guy, who seemed really gentle. As I got off the elevator I grabbed the living guy and whispered in his ear, "He's a zombie. He will kill you."

When I got in the car two zombies I knew were just sitting in there like we were friends. Riding shotgun was this really nice female zombie (she reminded me a lot of a particular lady with a disability who I worked with this summer). In the back was the zombie from the elevator who was a little more calculating. I couldn't convince them to get out of the car, so I just started driving. The zombie from the elevator kept saying, "What did you whisper to him in the elevator? He was staying away from me. Why did you do that?"

Finally I was at the end of my rope. "Because if you bite people, they will die," I said. "When you bite people, they die, okay? I didn't want you to bite him."

"Oh, I see why you said that," said the female zombie.

I think this dream was interesting because it was the culmination of a lot of thoughts and feelings I've been having about zombies lately. I've been watching The Walking Dead a lot and obviously--and, yes, this does skeeve me out--pretty much every horror entity can be read as disabled in some way or another. Well, I don't read vampires that way, but lots of supernatural figures and ghosts tend to be creepy because they have nonstandard faces/bodies and/or they move differently. For example, in this completely terrifying short film Mama--which I've never been able to watch all the way through so don't be too hard on yourself. Another example is The Grudge where one of the ghosts often crawls around instead of walking. The Orphanage and Darkness Falls have ghosts that cover their faces because their faces are supposed to be so horrifying.

Recently I saw a YouTube video of people dressing up as and impersonating zombies. One commenter said that "they look like they have cerebral palsy," and was lambasted by other commenters for "making fun of people with special needs." I can't help seeing this as really disingenuous--not that the first commenter was awesome, but are you seriously going to pretend to be some kind of gooey champion of "special needs" when you're into zombies, which resemble disabled people more than any other monster? Like, look at this video of extras in The Walking Dead learning to "walk like zombies":

I mean, without the makeup there is kind of a sketchy feeling in watching this, at least for me. Some of the people still look supernatural, but a lot of them just look like they're doing an awkward impression of a disabled person. (By the way, I'm definitely including people with mind disabilities, including myself, in the "people who zombies movie like" category. For whatever reason, weird gaits tend to be a thing for a lot of people with ASD and ID.)

I think I ended up having a dream where I was kind of friendly with zombies because for the last month I've been developing a sense that I'm basically a zombie. Like, it seems like a pretty simple way to explain stuff. Look at this from the Walking Dead comics Wikipedia page:

Zombies may follow something that has caught their attention for hours, such as a gunshot, after which they may follow in the general direction for days, even if they have forgotten what they originally were pursuing.

From the page describing Romero zombies vs. other kinds of zombies:

The animated dead retain vague impulses derived from former living behavior. For instance, zombies often return to specific locations they frequented when alive...Lacking immediate victims to hunt, zombies will often fumble through crude motions reminiscent of life activities, often when prompted by a familiar artifact such as a telephone or car.

Yeah, pretty much.

I was thinking of writing a story about a person who is bitten by a zombie but thinks she can remain human through willpower. Then I found out from TV Tropes that this is already considered a trope, but I think there would still be mileage in it. Especially because I don't think a zombie apocalypse would happen (can you imagine a bunch of AWVs being powerful enough to destroy society?), I think that the infected person could still be trying to go to school or work or whatever, while losing the cognitive function that enables them to succeed in those environments. And they do a pretty good job, until one day they can't anymore.

(Note: if you found this post when you were googling The Walking Dead or something, please don't start making comments about how I'm too politically correct or whatever. I'm not trying to attack/call out anyone for being into zombies--I mean, I'm into zombies and I obviously am into/am affected by some of the other tropes I'm reading as disability tropes. It's probably kind of fucked up that that's the case, but I'm more interested in reclaiming this stuff and thinking about what it means instead of just saying it needs to go away.)

13 November, 2010


I remember feeling annoyed by some of the comments on Ari's Wired interview in the ontd_political community on LiveJournal. Basically the interviewer wrote something like, "Imagine a world where most of the public discussion of homosexuality was about curing it." And everybody flipped out and was like, "but that IS what it's like!! Oppression Olympics!"

First of all, the interviewer is gay, which I think matters. His experience as a gay person obviously hasn't led him to feel that most of the public discussion of homosexuality is about curing it, or he wouldn't have made that analogy. I understand commenters may not have known he was gay, but they assumed he wasn't. And I think the fact that a gay person made that analogy indicates that "public discussion of homosexuality is mostly about curing it" is a disingenuous statement in the US. I wouldn't make that analogy just because I don't think it's particularly helpful (plus I'd expect all the Oppression Olympics accusations), but as a gay person I don't think the basis of the analogy is untrue. Of course SSA people are oppressed but I think we moved out of the medical model a long time ago, which is a triumph.

I was also really pissed because at one point one of these people said, "Hey, people get KILLED for being gay, that's not a fair comparison." Getting pissed at someone else for doing Oppression Olympics on what you claim is not a true assumption, and then starting your own Oppression Olympics round based on an assumption that is incredibly untrue, and obviously so to anyone who's engaged with disability issues...is way way worse than what Steve Silberman did.

Oppression Olympics--let's call it "comparing oppressions" to be a little more measured--is a tricky issue. A few months ago I posted about this person who was saying, "Pop culture is so into portraying autism but eating disorders and depression should be portrayed too." That person's post really frustrated me because they obviously didn't have a good grasp on how autism is being portrayed or how people with autism feels about those portrayals. They didn't have the compassion, or didn't do enough research, and ended up complaining about how good people with autism have it in pop culture compared to them and their friends with psychiatric disabilities.

However, I do think that comparing oppression can sometimes be a good thing. Because I'm queer and disabled I'm obviously aware of things straight and non-disabled people do like "trying to explain alternate points of view and get you to think more objectively." (I'm not going into detail on this, but do you know what I'm talking about?) So I think this means that while I definitely don't "get" what it's like to be a person of color, etc., I'm at least a little more aware of my privilege and try not to go all, "But you're being mean! Think about white people!" This term I have also felt sort of weird in my fiction class because I've felt kind of synced-in to classmates of color's stories which address identity and experiences of oppression, but when my instinct is to respond to those stories as a minority, I worry that it will be rude because they may not read me as a minority or as the same kind of minority as them.

I recently had the interesting experience of saying to someone, "I mean I know comparing oppressions is wrong, but--" and having the other person cut me off: "I don't think it's wrong. I think the only way anyone ever learns anything about someone else's oppression is by having it related to a type of oppression they're familiar with."

Which...damn, I'm sorry, but that is how it's worked for me.

I feel like one way of looking at this is that there are just two different kinds of comparing oppressions and one is trying to prove that someone has it worse than someone else (which I guess you should say is about dividing people), and one is trying to help people understand other people's experiences (which is about allyship and connection), but I think this is really an oversimplified way of putting it, because a lot of the time someone will think they're doing the latter, but other people will feel that they're doing the former. For example, when the Special Olympics did ads where they used racial slurs to try to make people more aware of ableist slurs. That was really fucked up. At the same time I feel like trying to relate ableism to other forms of discrimination can be useful sometimes.

12 November, 2010

Social Skills Don't Exist

An exploration of the concept of social skills, particularly (but not exclusively) as it relates to people with autism, victim-blaming, and the Power of Love:

1. What are social skills?
2. What this is not

Showing likability and connection, and skill and work, that is unrelated to being normal:

3. About Stephen
4. Social skills and intent
5. Is going to a hospital normal?
6. Mindfulness and modulation (a general look)

7. Break for love

Some more on skill/work/compassion:

8. Mindfulness and modulation (cashiering)
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)

Other things on various subjects:

10. a note on a
10a. input vs. output
11. My year of flops
12. Bird brains

13. Social model of social failure

13. Social model of social failure

I guess this as close as I will get to an ending. I've typed up everything I can find in my notebook related to this, and written the things I had floating around.

Basically I think it's definitely true that a lot of normal people sync up with each other and come off in certain ways to each other, and then when a lot of people with autism don't sync up with normal people, or don't come off properly, the results can be very bad for the person with autism.

I don't think this relates to people with autism not having "social skills."

I don't think social skills exist. Or, if I do, I think they exist like God exists--in everyone. They just may not always be apparent. For example, I may have very good social skills when relating to other people who have disabilities, or people who are interested in the same things I'm interested in. I have much better social skills with men than I do with women. Social skills are not contained in a person--they require the right other person.

With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people--or, so that more people can have good social skills with them. It's the same thing.

Some people--disabled or not--may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.

Other people will just not let other people in. Sometimes it will be because the other person is obviously different. Such people may have good social skills when interacting with people who aren't different. But with people who are different, they will always have no social skills; and when a person who's different is with someone like that, they will "lack social skills" too. (But if they were told by a professional that they lack social skills, they won't understand the two-way nature of the failed connection.)

A person could be going through life, who can't talk, doesn't like to look at people, and is in a lot of emotional pain which they express with "challenging behaviors." This person may live in an institution where no one engages with them because the person is not judged to be interesting, or interested, or capable. One day a new person comes to the institution who is interested in the first person. They start to walk around together and sit together, even though they don't look at each other. Maybe they play games like the two kids I knew who liked to move each other's arms without looking at each other. Maybe they make noises at each other. Maybe they just physically stay near each other as much as possible. This is what life is about, and for some people, it never happens.

But it just takes people who fit each other, or learn to fit each other.

When someone is isolated or bullied, that is not all about them. Other people are bullying them and deciding not to engage them. Still other people, from a distance, in abstract, are framing the person as Someone Without Social Skills, while leaving the other people involved unmarked.

But everyone involved must have bad social skills, because they are all contributing to what is going on. Maybe we can't in the short term stop people from bullying and isolating other people, but we can in the abstract apply the social model of social failure, and stop saying that social failures deserve to be alone.

12. Bird brains

The classic example of impaired "social skills" in people with "Asperger's" is a person who constantly talks about their favorite subject, and doesn't notice other people's boredom or discomfort. I will explore this by presenting two people who like to talk differently.

Tobias likes to receive a lot of information at once, or give a lot of information at once. When talking to Jake, Tobias will try to talk about his favorite subject, roadkill, and doesn't notice that Jake is indicating he is bored, which he is showing by checking his watch, sighing, and trying to change the subject.

Jake likes to joke around and talk briefly about various subjects. He will ask Tobias how he is doing, then switch the topic to his own family and friends, then just as quickly make a joke that he hopes Tobias will laugh at and build on. Jake doesn't notice that Tobias finds all the agitating and confusing, and is expressing his feelings by humming, rocking around, and constantly changing the subject back to roadkill.

Jake and Tobias have different brains, but they're both acting the same. Neither person is observant about how the other person might be feeling; neither puts forth the effort to have the kind of conversation that the other person might like.

However, if a professional observed Jake and Tobias and wrote a report, the report would be about how Tobias couldn't relate to the "typically developing" or "neurotypical" Jake. Jake kept trying to have a give-and-take conversation with Tobias, but Tobias wasn't having it. The professional might even conclude by saying what a nice person Jake is for being friends with someone like Tobias.

But in fact, even if Jake is being "nice" by wanting to be friends with someone different from him, they're both failing each other in the same way. This is why I don't like the words "neurotypical" or especially "typically developing." People plug those words in to be politically correct, but if they still are framing interactions between "typically developing" and "special needs" people this way, then the words they really mean are normal and defective.

11. My Year of Flops

At the Onion AV Club, Nathan Rabin writes a series (which is now also a book) called My Year of Flops. Rabin watches very unsuccessful movies and rates them as Failure, Fiasco, or Secret Success. I am interested in the idea of people being "flops." A good example is Stephen, described above. Like most people with significant developmental disabilities, Stephen is written off by many normal humans; and a professional could have a great time studying Stephen and writing about all the "social skills" he "lacks." However, Stephen does connect to people, does affect other people positively, and is well-liked. Stephen is a Secret Success.

The opposite of flops, of course, are blockbusters. Some normal people--and I would argue that these are the people who could actually be termed "superneurotypical"--come off to other normal people as really nice, trustworthy, decent, competent, etc. They just hit all the buttons that make normal people feel at home. (And people with autism who are trying to fit in may try to have the same reaction to blockbusters that normal people do.) Blockbusters can be rated as Success, Fiasco, or Secret Failure.

One time when I was thirteen, all the Spanish classes in my grade went on a field trip to a Mexican restaurant. The table where my only friend was sitting was full, so I sat at the nearest table to her. The people who sat down at my table included a boy named Michael who was a Secret Failure. Michael asked why I had to be sitting at their table. I responded "I thought it would be amusing" (this is hard to explain but it's kind of similar to when George Takei said that he wanted to have sex with Tim Hardaway--the idea being that if someone thinks you're disgusting, you try to take ownership of that).

Michael said, "Well, I think it would be amusing if you fell out through that window." (There was a large plate glass window across the restaurant.) I tried to distract myself by writing a poem on the flyleaf of the book I was reading, but Michael carried on in this vein for the entire meal, describing different ways that I could die or become injured. Later my mom made the mistake of repeating this to the mom of another kid from my school. The other mom replied, "I believe that Amanda thinks she's telling the truth, but Michael is a really nice boy."

Michael went on to go to Georgetown and will probably live the rest of his life without anyone finding out he is a failure. I on the other hand actually think of my younger self as a failure for doing things like using the word "amusing" when a more standard word for someone my age would have been "funny." I also used the words "quite" and "suppose." Seriously! What did I think was going to happen?

In addition to using the wrong words, I was also kind of a douche at that age. For example I did (and still do sometimes) make jokes about things that other people were sensitive about. I didn't think about how this would hurt someone's feelings, and I still feel bad when it happens now. But I've never told anyone that I think they should fall out a glass window, so I think I am fairly categorized as a fiasco, not a failure, even though I am a flop.

10a. input vs. output

(Even when you just stay on body language. In my experience it is much more likely to get rejected for your own body language/facial expression/tone--other people read you as a normal person who is sketchy/offensive, or read you as an "other" that they find undesirable, such as disabled/"weird." It actually takes a while to judge how someone else is responding to the way you move and sound--judging the way someone else moves and sounds is much faster. A lot of people with autism could drill themselves forever on how to read other people, and still would regularly get rejected because they haven't changed their own body language.)

10. a note on a

In case you forgot, a means being able to read people via their body language and facial expression and tone of voice, and to be able to adjust how you deal with them appropriately based on that and was posited by Fiona as a "social skill."

Today she said: (C) [is mostly a consequence of having (a), I think. If you recall, (c) is being able to approach people and make friends without experiencing a lot of rejection.

I can nitpick a lot about a, and I love to, but I'm going to try not to do that in this series. There certainly are a lot of people with autism who say that they can't do that stuff, and they may be right. I don't think I need to prove a untrue to prove that it's absolutely ridiculous for c to proceed from a. So I'm going to assume for right now that a is completely true--cartoonishly true, even, to a level that no one claims it's true in real life. Let's say that people with autism can barely read any expressions besides smiling and crying (and can't tell different kinds of smiles apart), can't read body language at all, and can't tell tones of voice apart except for very basic differences like the difference between a question and a statement.

My immediate reaction to this is that if these abilities were objectively important, then blind people would always be socially isolated and their social isolation would be framed as natural in the same way that social isolation is framed as natural for people with ASD. But a lot of people who have no idea how other people are moving their bodies or faces are able to have friends.

However, I guess the difference is that sighted people generally notice when someone is blind, so they don't take the person's lack of appropriate reaction to their expressions as meaning anything other than the fact that the person is blind. But this is really a difference between what a non-disabled person knows about blindness and autism--it's not really a difference between blindness and autism. What if the concept of not being able to read facial expressions or body language was as commonly understood as the concept of not being able to see? Then when a non-disabled person met someone who didn't ever seem to understand their tones of voice, body language, or facial expressions, they wouldn't be offended by specific failures of understanding (like when the other person fails to tell from their face that they are upset).

So, that's said. But the whole conflict I just set up, in my experience, isn't even the main thing keeping a lot of people with autism from being socially successful.

9. Mindfulness and modulation (being practiced, and not practiced, by professionals)

When I think of mindfulness and modulation, I think of floortime. When someone uses floortime, they try to engage with someone who has a disability by engaging with the things that are important to that person, like games, stims, and special interests. If the person doesn't respond to you in obvious ways, you try to get a response by acting differently, or doing something that you know will provoke a response (like picking up something they are playing with so they'll have to take it back from you). I do think reading Greenspan has been helpful for me because it gives specific examples of how to apply this philosophy, but when I hear people acting as if floortime (and its less awesome and inexplicably expensive counterpart, Son-Rise) is some kind of complicated scientific theory, I wonder how those people normally treat other people in their regular lives.

Right now I occasionally get to work with some late childhood/preteen-age kids with ASD, who don't tend to be verbal unless it's required. If I go into a room and see a bunch of kids with ASD (or a bunch of people any age with anything, actually) who are all kind of keeping to themselves and playing/looking at different things by themselves, my immediate reaction is:

1. Go stand or sit near someone but don't get super in their space
2. Maybe mumble about something or other related to what they're doing
3. Try to touch some of the things they are playing with, like if they are playing with trains, pick up a train piece they're not using and offer it to them
4. If they try to hug me or touch my hair or whatever, I try to touch their hair or tickle them or something and proceed based on whether they seem to like this
5. And so on

Once I saw two nonverbal kids with Down Syndrome playing some kind of game which consisted of standing near each other, not looking at each other, but making advances into the other's space (like sticking their arm out), then physically moving the other person's arm down. So I started sticking my arm out to see if they would let me be in the game. I don't really see how this isn't the obvious way to react in that situation.

I mean seriously, it actually makes me concerned that people think there is something weird or groundbreaking about such a basic way of relating to other people. This stuff doesn't always have some amazing effect (it definitely doesn't "cure" anything like Son-Rise claims, which is why Son-Rise is so dumb) but I have had lots of nice interactions/connections with nonverbal people who, if I was stupid enough to go up to them and ask "Hi, how are you?" and expect eye contact and a handshake, would probably strike me as not being interested in people.

It is pretty interesting, if reading other people and changing your behavior to fit them is such a basic skill for people without autism, that people need to even be told about floortime or related methods at all (and that an abnormal person like me finds it really intuitive, at least in its purest forms).

It is also interesting, although I totally admit I'm straying really far from my original "social skills don't exist" germ, to observe the lack of flexibility, compassion, or modulation in a very strict behaviorist program that discourages people with autism from stimming, having special interests, or avoiding eye contact. Especially when behaviorists will say that their clients with autism are being lazy or not paying attention, or intentionally causing trouble, when the person does things like avoiding eye contact, stimming, banging their head, screaming, etc., instead of thinking that perhaps the person is just behaving neutrally, or is even expressing that they are really upset. Many behaviorists cannot read other people's emotions very well.

8. Mindfulness and modulation (cashiering)

You learn a lot about this stuff if you are a cashier. A lot of the time, people will say unpleasant things for no reason, apparently without meaning to be unpleasant. A good example is when they will complain, often rather nastily, to the cashier about the high price of an item. Common sense and logic would indicate that a late teens/early twenties scraggly-looking cashier such as myself is probably not responsible for high prices or able to do anything about them. However, these people either lack the ability to discern this, or the ability to care about being rude for no reason.

(A fun fact: when I was younger, I found it almost impossible to buy anything because of anxiety that I would annoy or offend service people with my facial expressions, eye gaze, and general slowness, or by taking too long to put change back in my wallet.)

At the school dining hall where I work now, there is no cash payment, but there many other occasions to display a lack of mindfulness. Until recently, most people used take-out containers, and I was required to ask them to open their containers. (I'm not some kind of hall monitor asshole, but my manager hates me and would lurk about in the hopes of being able to catch me not looking in a take-out box.)

There were three kinds of people. Some people remembered the rule and would open their boxes before I even had a chance to ask. Some people required a vague prompt (I would gesture at their take-out box and mumble something; it didn't really matter what I said because they picked up on what I was asking them to do). A third group of people, thankfully a minority, didn't understand the prompt and I had to do a lot of word-finding and enunciating to explain what I was asking them to do. (Believe it or not, cashiering is a mostly nonverbal job except for like one script that you use over and over.)

I didn't resent the third group of people--maybe they didn't eat at the dining hall much--but I did feel very affectionate towards people who needed little prompting or no prompts at all. I developed a huge crush on a particular girl who would come to the dining hall to get take-out every day by herself. She would always come up to the register, open her take-out box without me saying anything, and give me this kind of grimace-y, rehearsed-looking (but adorable) smile. The smile made her look sort of scared, but I didn't know if she was actually scared. I just thought that her whole scripted routine was the dreamiest thing ever.

I have seen this girl walking around with other people, so I don't think she is like a social outcast or anything, but she's obviously a bit shy or strange or something and I can see that some normal people might think she is "sketchy" or "off" if she smiles at them that way. But in my limited interactions with her, she has always been observant and done everything possible to make things easier for me, even though she doesn't know me. This makes me think she's great.

7. Break for love

While writing the last post, I felt required to say this.

I know that when I've talked about this before I've been disrespectful to people who identify as socially impaired and I'm afraid of being that way again. And I'm also afraid that bringing up the whole love thing will sound like a cop-out--"you can't disagree with me or be offended if you feel like I'm erasing your experiences, because I'm only saying this because I love you so much."

So I mean, you can still be mad at me, okay.

But I love a lot of people who have autism, and autism-ish things. And I've experienced so much connection and affection and support and sensitivity, with/from these people. This is why I am so upset about the pop-culture-and-even-a-lot-of-professionals concept of people with autism as lacking love, or not knowing how other people are feeling or how to support other people, or not knowing how to connect with other people--because who the fuck has been supporting me and connecting with me, Nailbunny? And I'm really really upset about the medical model, "the person is the problem" way of looking at weird and/or disabled people who are bullied or isolated. Because I love people who were/are bullied or isolated, and it's fucking damaged them, and they didn't and don't deserve to have that happen to them.

I mean, I like arguments. And sure I'm defending myself too. But I think this is a project that comes out of love and the rage that comes from love.

6. Mindfulness and modulation (a general look)

One time when I was making an earlier stage of this post, Fiona commented and defined social skills in the following way:

I think social skills are a cluster of related skills, not just one skill. Mainly I think it revolves around a) being able to read people via their body language and facial expression and tone of voice, and to be able to adjust you how deal with them appropriately based on that, b) being a good communicator; knowing how to bring up sensitive topics and assert yourself without increasing the level of conflict but being able to achieve a sort of win-win situation where both parties feel like they were treated fairly and got what they emotionally needed, c) being able to approach people and make friends without experiencing a lot of rejection.

Right now I would like to zoom in on b (I think c is what a lot of this series is about--rejection is an action undertaken by other people--and I may briefly address a because I think it's the "skill" that has the strongest case and it would be disingenuous for me to ignore it). If you are going to describe social skills as getting along with other people and being diplomatic, then you have to prove that normal people usually get along with other people and are diplomatic. You can't prove this, because almost everything that happens in the world shows that it isn't true. Besides, if all normal people had this type of "social skills" and all people with autism didn't, then people with autism wouldn't have social problems anyway--as long as they only interacted with normal people, they could rely on the normal people to adapt to them. Since this is not how things are, it can't really be true that b is a part of being normal and not-b is a part of having autism.

I actually do think there is a skill set that involves mindfulness and accommodating other people, but it is not particularly associated with normal people. Lots of normal people have it but lots of people with ASD have it too. In fact, I think that some people who have grown up being "weird" or "socially impaired" or "socially isolated" have an almost mathematical sensitivity to other people's feelings, because to them relationships feel more novel.

One time another person with ASD send me an email saying something like, "I'm really stressed and I have to write an email to my sister, but I thought I should write to you first because I know that you might get worried and think I'm mad at you if I don't email you back." This is a good example (and a lovely person), but a better exploration of the same thing was written by Luai and posted here:

I saw a report once about a study where autistic kids and NT kids were asked a series of questions about how they would act in certain situations; one of them was what they would do if they saw their mother crying. While the NT kids answered that they would go over and talk to her and hold her, the autistic kids almost universally said they would do something they knew she liked, like emptying the dishwasher, or making something for her.
And I love this, because it illustrates something I've always felt was true. If you don't know the social script, the set thing "everyone" does when someone is upset, or the set thing that "everyone" thinks is valuable, you have to think it through for yourself. You have to think, what makes person X happy? And this is why that boy caught bugs for you in seventh grade, and why I made a green alligator-shaped valentine for my crush in first grade, and why a friend of mine made a special "romantic dinner" for her boyfriend that consisted of pokemon mac-and-cheese and dinosaur chicken nuggets.

Sadly the article referred to going over to one's mother and hugging her as being the "right answer" (as in, "all the normal kids picked the right answer, but the autistic kids...."). >.<; I honestly don't know how people can continue to be so stupid.

Postscript: I like Fiona and she can have whatever opinions she wants. I don't want her to feel like a frog that I am taking apart.

5. Is going to a hospital normal?

I really love chaoticidealism's blog, but I take issue with something she said in this NPR article about her. I actually don't really like the article at all because it seems to be focusing on how Lisa Daxer/chaoticidealism's ASD causes her to be able to study normal people and their amazing social behavior. I dislike this frame of autism ("autism teaches us about ourselves [ourselves meaning people who have certain abilities and act a certain way]!") and, although I haven't read all of her posts, the ones I have read have been about ableism and disability/autistic identity, not about studying normal people. I feel it does her a disservice to describe her blog that way.

Anyway, the offending passage is:

Daxer learned a lot about empathy from one of her housemates, a young woman she calls "superneurotypical" because she had such good social skills.

At the time, Daxer was feeling increasingly depressed and isolated. This woman seemed to understand. "I think she knew that I was hurting and she didn't want me to hurt anymore," Daxer says.

But her depression got worse. Eventually, Daxer ended up in the hospital.

"She visited me in the mental ward," Daxer says. "In our society, being crazy is considered very, very frightening. You think of TV slasher killers. And this girl, when I had depression, she visited me in the mental ward. That takes courage; that takes friendship; that takes empathy."

Obviously this girl sounds awesome, but I wouldn't characterize her awesomeness as "superneurotypical." To say that someone is "supersmart" would mean that they have more of whatever the average smart person has; to say that someone is "supergay" would mean they have more of whatever the average gay person has; and so on.

So, is the average "neurotypical" person (not a word I like, but I'll go with it) able to kind of judge what a person with ASD is feeling? I mean, is it the case that "neurotypicals" are better able than ASD people to judge everyone's feelings, not just "neurotypical" feelings? Which would lead to the conclusion that "neurotypical" people outperform ASD people at judging ASD people's feelings?

Well, that would be interesting--but it's obviously not true, because many people with ASD say that they can judge the feelings of other people with ASD. I don't know whether that's the case for me*, but I definitely know that lots of non-ASD people are terrible at judging how people with ASD are feeling. If you just noodle around the Internet for a minute, you will find quite a lot of ASD people describing how someone thought they were nervous or sad when they were calm, bored when they were having a panic attack, uninterested in things they were actually very interested in, and so on. In fact, sometimes police officers will harass or physically hurt people with ASD because they misinterpreted the person's behavior.

Lisa Daxer describes the "superneurotypical" girl as not just being able to identify LD's feelings, but as being brave and kind because she visited Daxer in the mental ward of a hospital, an intimidating and stigmatized place. Is this, too, a super version of normal behavior? Would the average normal person do something a little bit intimidating for the sake of kindness, whereas this extra-normal person did something very intimidating? With the implication being that people with ASD wouldn't inconvenience themselves for the sake of kindness at all?

Again, I think this is not true. I think normal people run around hugging each other all the time because that's easy for them. I think all people, when confronted with a scary action that seems like the right thing to do, make a decision based on various things--ability to handle anxiety and stress, bravery, morality, how much they care about the person they're doing it for.

I don't think chaoticidealism's friend was more normal than other normal people. I think she was a normal person who was extremely sensitive, loving, and brave. I think disabled people can also be sensitive, loving, and brave, and I would prefer that those characteristics not be equated with "ourselves" (non-disabled people) at the expense of the rest of us.

(I should mention that the impression I get of chaoticidealism from her blog is so different from the impression I get of Lisa Daxer from the article that I wonder if her comments were misrepresented by NPR. I have no idea whether this is true, but if it is true, the passage in the article is still a good example of how not having autism is associated in pop culture with kindness and sensitivity, to an illogical degree.)

4. Social skills and intent

I also guess you could--well, I mean, I can kind of feel the shape of an argument in my head--"Just because you guys like Stephen doesn't mean that Stephen has good social skills! That's something you guys are doing, not something Stephen is doing." I am sort of intrigued by the surfacing of this idea in me. If someone is severely disabled and doesn't really follow social rules like saying please and thank you, and doesn't seem to modify their behavior based on other people's reactions (I'm now talking about a hypothetical person because I feel like it's not possible to objectively judge that any real person isn't modifying their behavior), can that person really be said to have social skills any more than an object or a baby or a dead person that other people feel comfortable around? How can just being likable be a social skill?

Well I don't know but aren't some nondisabled people also just like a pretty rock that other people respond to because the sight of it makes them feel good?

I'm later going to discuss the idea of "mindfulness and modulation," which is a particular way of relating to people that I think is legitimately termed a skill, but which is not especially underrepresented in people with ASD, and is even overrepresented. Mindfulness and modulation is actually a conscious, intent-based social style. But lots of non-disabled people who are socially successful do not practice mindfulness and modulation, and may not move through the world with any more intent than someone like Stephen.

I mean, I recall meeting a friend of a friend who seemed very normal, and whom I didn't particularly like. Afterwards, my friend said, "She's sort of hard to spend time with because she doesn't pick up on social cues." I remember thinking it was funny because that seemed like such a textbook description of someone with "Asperger's," but this girl didn't have any of the qualities that would cause me to read someone as ASD. It hadn't even occurred to me to think of her as having "bad social skills" because she was normal. I guess I think of "bad/nonexistent social skills" as being something They say about Us--people with DDs or mental illnesses, or people who are part of subcultures. If They fuck up, if they're insensitive, it's just how they are.

If I fuck up, I think it proves everyone right.

Kids with ASD are said to be bullied and ostracized because they "lack social skills." In this equation, people who hurt other people (the normal people who are bullying the ASD people, conveniently erased by the passive voice) are said to be skilled. In this construction, they are the Haves and we are the Have-Nots and the thing they have is the ability to understand other people's feelings and reactions.

But um, then why are they acting like that if they know how it feels? When I was being bullied I remember having a feeling that the people who bullied me weren't real because they didn't seem to care about anything real and they didn't seem to know that I, and their other victims, were real.

(I went on a brief mental tangent trying to figure out if bullying can be considered a social skill--I mean yes they are mean blah blah, but even a bad action can come out of talent. I've concluded that while certain types of manipulation and abuse can be considered skills, most of the people who bullied me were not especially sophisticated at doing so. Obviously I was affected, but it's very easy to make someone feel bad; the tactics they used on me would have worked on almost anyone.

In the "My Year of Flops" section, I will discuss a bully with very good "social skills." I don't mean to imply that no such people exist.)

3. About Stephen

This summer I had a camper named Stephen of whom I was very fond. Although Stephen was not very good at explaining what he wanted or needed, he talked all the time as he was a full-time user of language as maintenance. Some common threads of his were:

"They have to charge the golf cart?"

"No camp in the winter."

"Will I have a good Thanksgiving? Where will I go?"

"Is it mine?" (about various objects)

"I'm on vacation?"

"I'm not going home today. I like it here? Yes, I like it here."

When I was on break I'm told variations on the following occurred:

"Where's Amanda?"

"She's on her break."

"Amanda's at Walmart. Where's Walmart?"

"It's in Rutland."

"Where's Rutland?"

"It's about half an hour from here."

"What's a Walmart?"

"Stephen, you know what a Walmart is."

"Which Walmart? Where?"

"It's in Rutland."

"Where's Rutland?"

I have often seen "asking repetitive questions" used as an example of ASD people's inappropriate social behavior. Setting aside the fact that Stephen was a very nervous person and I would never criticize him for trying to calm himself by confirming that the world continues to work in the same way every day, I felt close to him when I was answering his repetitive questions. I was very stressed out and I can't imagine that session without Stephen's presence and our conversations, which were like verbal massages--straightening out our minds by moving them carefully along the same old tracks. I love old tracks. I miss Stephen all the time.

I guess you could say that even if Stephen had the perfect social skills to socialize with me, that doesn't matter because I'm not normal, but for one thing I know a lot of normal people who like Stephen, and also it's not fair to say that only some people deserve to have their reactions to other humans be so important that they become the yardstick by which other people's abilities are judged.

2. What this is not

Before I start I should say that I'm not trying to write about what autism is and outright deny that there are social issues. I have in the past made the argument that social impairment in autism doesn't exist--that minorities, especially people who perceive reality differently, can be socially isolated without having an impairment that is objectively social at heart. However, I put forth this argument without being sure I was right. It's an extremely complicated question.

What I'm trying to do in writing this piece is destabilize the idea that people with autism (or, for that matter, anyone else) have "impaired social skills" or "no social skills." I think that's a very vague and dangerous thing to say.

When a person is labeled as "lacking social skills" this can cause other people to treat them as less than human. Many people with autism have stories of expressing their feelings or opinions, only to be told that their feeling or opinion is a result of their poor social skills, and therefore isn't valid. (This is a good example of what I mean.)

Another problem is that when you look at a person who isn't fitting in and say, "This is happening because they have bad social skills," you don't acknowledge the fact that everyone contributes to one person's social isolation. Basically, I'm trying to present something called a social model of social failure. The truth is that no one is naturally fated to be socially unsuccessful based on who they are.

This is not a tightly written argument where each section leads to the next. It's a collection of loosely related arguments, many of which are in the form of anecdotes.

1. What are social skills?

When I was in eighth grade, my history teacher mentioned an interesting piece of trivia one day during class. "There's this disorder called Asperger's and people who have it have no social skills." I don't remember why he said this, but since I had recently been told that I had "Asperger's," it was a little more than interesting to me.

I was going to say that saying someone has no social skills is akin to calling them a corpse, but actually I guess some people open up to corpses in a way they don't open up to anyone else. So maybe corpses know something we don't.

I am socially impaired because I'm Autistic, but I'm also socially impaired because I'm gay. Some people are uncomfortable when they learn that someone is gay, so I risk an awkward silence if I mention certain parts of my life. This means I can seem quite withdrawn in certain environments.

If an American teenager's parents are from another country, don't speak English well, and aren't involved in American culture, that person is socially impaired if they go to school with kids who all have American parents.

We can talk about blindness and say that in a country where everyone was blind, being blind wouldn't matter at all. We can say that being blind matters less when blind people are accommodated by people who aren't. We can say the same thing about dyslexia. But while difficulty is constructed, impairment is not--a blind or dyslexic person lacks an ability that other people have.

But what does a person lack if they have no social skills? How can anyone be bad with people? There is more than one person in the world.

11 November, 2010

Social Skills Don't Exist

I'm finishing my Social Skills Don't Exist post as my birthday present to myself, but because it's kind of a collection of interrelated observations and arguments I don't want to put it in one post because that implies that each section reasonably leads to the next. I would kind of like to put it on my website as a series of links, but coding will take a while and stuff, so for now I'm just going to spend the next day or so spamming you with all the pieces.

Sorry kids.

09 November, 2010

There are really good people in the world and apparently a lot of them are right here. Things are better. Thank you.

08 November, 2010

(things aren't going well, obviously)

I'm approaching the cutoff for DD services for acquired disability so all I can think about is I better get one right now. I'm thinking of lying down in the middle of a busy intersection except we don't have those in Lorain County.

(imaginary conversation)

"I'm hoping someone will come up and hit me in the forebrain with a blunt object so I can have a real disability."

"That's a terrible thing to say!"

"I know. But I have autism, so I think I'd be pretty much the same."

"Oh yeah, I heard about autism on TV. Is that the disability--oh sorry, do you prefer 'difference'--where you rock back and forth and don't like looking people in the eye?"

"Well yeah but that's not the part that makes me want to stick my head in a gas oven*."

*speaking of, my former professor/friend told me that maybe I am like an electric oven (gets to a particular setting slowly) and other people are like gas ovens (gets there right away). At the time this sounded kind of sweet, but all ovens are not created equal. Now I face explaining why I can't go to my practicum because my friend's car is in the shop and the reason I'm using my friend's car (which is massive and doesn't have a working dashboard--you have to guess which gear you're in and how fast you're going) is because the process of applying for a community service car was too complicated for me. In previous years, this professor has accused me of "putting myself down to get sympathy," so I can only imagine how fun this conversation will be.

strength through music

although I guess I don't use a super spaced-out singing style anymore, I used to sound like I was in the Magnetic Fields or Camera Obscura. The first time I heard a Camera Obscura song, when I was about sixteen, it was very strange to hear someone who sounded like me.

I like their more recent stuff but the first album I bought by them was Underachievers Please Try Harder and I like it the best. I think Tracyanne Campbell's singing has become slightly more active since then, and their lyrics have become less irritated and snarky. I always really enjoyed listening to a song like "Keep It Clean":

I guess by now you think I'm weak. I wish you would have said something before now. I wouldn't share a bag of chips with you. In my opinion you don't have a clue. I'm being cruel, I'm being cruel.

There are plenty of lyrics on the album where the narrator of the song is criticizing herself, like in "Suspended From Class," but I really enjoy the songs where she is either saying mean things about someone else, or seeming to criticize herself when she's really criticizing someone else's way of treating her. "Books Written for Girls" is my favorite example of this:

You can compliment me on the style of my hair, give me marks out of ten for the clothes that I wear. You probably thought I had more upstairs. I disappoint you.

"You probably thought I had more upstairs/I disappoint you" is just one of my favorite moments in a song ever. I think I like it because people who are thought to be dumb by other people are always expected to either not be aware of it, or to be too intimidated to say anything. So when Tracyanne sings "I disappoint you" in a voice that sounds a little sad, but also bored, it seems like the biggest fuck you imaginable. Just turning to someone who's patronizing you and saying, "Sorry I'm not as smart as you want me to be," is the ultimate form of defiance especially if you're continuing to present in the way that's made them try to bully you in the first place.

I was thinking of "Oasis" by Amanda Palmer, which is a totally different song in terms of subject matter and sound, but has kind of the same quality. A lot of TV stations refused to play the video because "Oasis" is about a teenage girl being raped at a party, getting an abortion, and having the whole school gossip about her and call her a whore. Well, that's not the offensive part--the offensive part is that it's a really bouncy, cheery-sounding song, and the girl says that she isn't upset about her problems, because she wrote a letter to her favorite band Oasis and they sent her a signed poster.

Despite the events of this spring, I can't help but love Amanda Palmer's post On Abortion, Rape, Art, and Humor which she wrote as a response to being told her song was offensive. She points out that people (especially young people) who are having painful experiences don't just sit around saying "OH I'M IN PAIN, THIS IS SO SERIOUS." No one actually lives like that. And although she didn't say this in so many words, I think it is othering to demand that representations of abortion and rape (or any experience) should always be serious and sad. They happen to all kinds of people, so there isn't only one appropriate attitude or reaction.

Gosh I'm sleepy and going to bed, but I guess I wanted to say that "Oasis" and Camera Obscura (and other bands with spaced-out or soft singing, coupled with very direct lyrics), especially the latter, are kind of political/anti-ableist music for me in their very nature. I really like the idea of separating a musical style and what it's supposed to represent from what the lyrics of the song are actually about, because I think this is kind of a way of expressing through music the experience of people who are patronized, or oversimplified, or othered, or misread, because of the way we look and speak. Of course most people think that talking a certain way or moving a certain way always means something, but that's not true. Angry people can sound mellow, sad experiences can be lived in ways other than what's expected.

02 November, 2010

I just thought this was funny

this morning I had some seltzer in my room that I was drinking last night, and I had some twizzlers next to it. they were on the pulled-out tray of my desk.

in the refrigerator was some soda I wanted to drink.

after I got dressed, brushed my teeth and hair, and put on makeup, I went and got the soda out of the refrigerator because I was going to drink it. I put the soda on my bookshelf.

then I put the seltzer in the refrigerator.

then I came back to my room and I picked up the twizzlers and tried to bring them to the refrigerator and put them in there, but then I realized they were twizzlers and I meant to put the seltzer in the refrigerator.

then I came back to my room and I picked up the soda off the bookshelf and brought it to the refrigerator but then I realized I didn't want the soda in the refrigerator.

then I went back to my room and looked for the seltzer but I couldn't find it.

then I went back to the refrigerator and looked inside and the seltzer was in there.

the end