Infiltrate

This scene makes me think of my fifth-grade teacher:



I don't have much to say, just this. I am in a disability studies class; I don't know what I think so far. The professor has never taught a disability studies class before and I think we're supposed to figure out for ourselves what we want to write a paper on.

I want to write a paper on infiltration. I don't like for people to talk to me in a way that makes me feel like that picture. And I can't do it to someone else, which in some people's minds makes me bad at ABA. I am quiet when I talk to people who are upset. I don't grab them by the shoulders and force them to walk in a less stimmy line. I want to infiltrate services for developmentally disabled people so that for the minutes or hours or days a person is with me, no one makes them feel like that. It's not everything but it's something and it could change something in them.

I'm afraid to talk. A lot of the time if you work with ASD kids, being normal is a qualification. It's obvious in the way they talk--you want to bring in normal kids to show the ASD kids what normal is like. You want to model normal ways of sitting and interacting. By definition, I'm not qualified for a lot of the jobs I want to do. Because it's all about us vs. them. I want to write a paper on us vs. them. Because I can't ever be us, the most I can be is a really good them who everyone looks at as a success story because I try really hard. But do I want to try hard? And do I want to "emerge" from them, so I can yell in their faces too? Not hardly.

The gift

I need to expand this later. But today the Rapid Transit line from Tower City to the Cleveland Airport broke down, and as I was finding my way to the shuttle they'd arranged to take people to the airport instead, a guy started talking to me. He was about twice my age and I figured that he was someone I maybe could/should read as creepy, but I don't mind talking to people, and we were in a public place, so I kept talking to him. The bus was very slow so we ended up talking for, I think, at least an hour. Or maybe it just felt like that because we got so deep in so fast.

His name is Seth and he told me about his life, his different jobs and the places he lived. His whole family are writers, except him; he wants to open a machine shop. He used to live in Ann Arbor but he moved to Cleveland because it's cheap and because he thinks he has more chance of having a successful machine shop. He's also writing a screenplay. It sounds good.

Mostly he told me about Thomas Merton, a Catholic monk who wrote books in the forties through sixties. He told me about Thomas Merton's struggles with the abbot who was trying to control him, and his love life, the tragedy of it. Seth was serious and delighted. It was incredibly interesting. I felt so lucky.

So, what am I trying to say. I'm trying to say that many women (including me, especially me) think that eating a bag of Doritos is morally wrong. And I'm trying to say that I think being socially naive, being less than canny, being massively interested, finding myself overflowing, is morally wrong.

I spent four days with my friend Clayton. We stayed up late and talked about everything. I asked Clayton if he thinks my ASD is Real, Clayton said he could tell when he met me that I was making an effort to appear in a certain way. For some reason, this is one of the nicest things I've ever heard. What if I just don't pass? If I just don't pass, I can get on with the business of living. If I'm always going to be Odd, I can apply myself to working on my love.

Seth gave me a gift by telling me wonderful things. And by making me realize that apathy is never a virtue even if it is normal. And Clayton is a gift, because he's full of love, and as we were falling asleep I said, "Clayton, I just...I just want to be a smart, nice, interesting person...that's all I want...that's all I want people to think I am."

I'm not working on the other stuff anymore.

Neurodiversity?

I have a tendency to make comments on FWD/Forward that aren’t completely on topic and then they don’t get posted and I feel incredibly guilty and anxious about it. It’s true I feel incredibly guilty and anxious about everything that could be construed as a social mistake, but come on, let’s try to avoid it in this particular arena by just making posts on my blog when I’m tempted to comment in an off-topic way! First up: neurodiversity.

I don’t understand what the point of the term neurodiversity is. Someone on the FWD/Forward thread mentioned “many ASD people don’t know that neurodiversity includes other, non-ASD people with different brains.” Which is like...I guess it’s cool that it’s not just ASD people (even if some ASD people think it is) but what’s wrong with just saying “disability rights,” or “autism/ASD rights” if you’re talking about ASD in particular? Wouldn’t disability rights be more inclusive if you’re trying to be inclusive, and if you are focusing on ASD, wouldn’t ASD rights be a more unambiguous and straightforward way to put it?

It just occurred to me that the point of neurodiversity is, maybe, a catchier way to say “non-physical disability rights.” That actually makes sense. It still sort of grates on my nerves because it sounds incredibly cheery, like “differently abled.” Also I’m not sure if that’s what people actually use it for.

The term just makes me uncomfortable. It seems like an attempt to separate ASD people from other disabled people. Or, if not just ASD, disabilities that have a stereotype of Awesome Side Effects that are supposed to make up for the deficits--ADD, depression, bipolar disorder, etc. This is emphasized for me by the term neurodiversity itself. Diversity is a term that has been frequently used in reference to race, ethnicity, religion, class, and sometimes sexual orientation. Disability is being set up as the same as all those things. “We’re the same as you, just leave us alone and we’ll be fine.” But sometimes we won’t be fine. We need help sometimes. Sometimes our impairments are socially constructed (like stimming) but other times we really are worse at doing something that would help us (like processing and using language). I don’t think the difference between PWDs and other minority groups is so huge that we can’t be inspired and encouraged by the way other groups fight for equality, but at the same time, we can’t be fit into exactly the same “live and let live” model. (Actually I’d argue that it’s not a good model for many minority groups. But I’m tangling myself up.)

I feel the same about the explanation of neurodiversity (said by one of the FWD/Forward commenters, I think) as “people have different brains and that’s okay.” This just seems disingenuous. I’m not different, I’m IMPAIRED. And there are people who are a lot more impaired than me who have a lot more to fear than I do from the idea of disability as a neutral "difference."

I don’t know, I might be tilting at windmills, or at the very least semantics (there’s no question that many people I admire and agree with identify with neurodiversity). What do you think?

Space auties

My friend Clayton was telling me how he plays a video game where some of the characters are "basically autistic people on four legs." Then he kept saying "Amanda, I have to show you the SPACE AUTIES on YouTube!"



I think he's possibly better at fictional diagnostics than I am.

The harder fallacy

I keep thinking about something my friend said after we watched Precious and I was talking about how the portrayal of the child with Down Syndrome was offensive. (I'm going to refer to the character as Quishay, which is the name of the little girl who played her.) My friend kept saying, "Well, it IS harder to raise a kid with Down Syndrome." I said "Do you actually know any people with Down Syndrome, because if you did, I think you'd feel differently." My friend was like, "What do you mean, do you think I wouldn't think it's harder to have Down Syndrome? It's a DISABILITY. It's not a good thing. Are you saying it's not harder?"

I'm probably caricaturing this in my mind because it was a while ago and also it made me really mad. When I quote people who made me mad I tend to repeat the things they say in this particular voice that's both monotonous and overdramatic. I know this is a problem. I should be mature enough to disagree with people without being shitty about it. But it's really hard not to be shitty about it! Plus I hate the "it's harder" strawman even more than I hate the "but bad things will happen to you if you don't pass!!" strawman (#3 in the linked post).

So, I will just say what I wanted to say to my friend, but couldn't get out very clearly. Here are two facts about disability:

1. For whatever reason, nondisabled people tend to get grossed out or uncomfortable around disabled people.

2. By definition, all things being equal, it is harder to be disabled than it is to be nondisabled. Also, it's harder to be the guardian of a kid who is disabled because it often costs more money and the kid might have to live at home longer, or forever. Also, it's sometimes harder to be close to a disabled person (as a friend/significant other, as part of your job, or as a family member) because you are used to relating to people in a particular way that doesn't work with this person, or because you had built them up in your head as a person without a disability.

Some parts of #2 are not inherent aspects of disability. For example it isn't fair that it costs more money to raise a kid with a disability. That shouldn't be the case. But the fact that it's not inherent doesn't make it less real for the people for whom it's real. If a person is spending all their money so that their disabled kid can go to school, because public school does not do what the kid needs, it IS harder for them. So, yes. I'm saying it is harder to raise a disabled child.

But that's not the only thing in the world that is hard. And hard is not the same thing as repulsive or tragic.

In Precious, Precious has two kids. She is a young teenager. Her kids are the product of nonconsensual incest. Having kids as a young teenager is really hard. Getting raped by your father isn't just "hard," it is horrible, evil, and tragic. There aren't enough words to describe what it is. It's a lot worse than having a kid with Down Syndrome or any disability.

Now I guess it sounds like I'm on a track of saying Down Syndrome is okay because being raped by your father is worse. That's not my intent. What I'm saying is, Precious has two kids. The second kid she has, who has no disabilities, changes her life. She loves him tremendously, right away, and her love for him gives her the strength to fight back against her abusive mother and seek help. There are other factors that give Precious this motivation; it's not just the baby, it's that she has gotten support from her teacher and classmates. But still, this thing that is very difficult--a baby born to a single teenage mother--ends up being AMAZING. This exact thing happens to girls in real life, sometimes. Situations that are objectively really hard are experienced as wonderful and joyful.

So, harder doesn't equal bad or gross. And I would say that the portrayal of Precious's older child is as something bad and gross. It is totally unrealistic for Precious to have a baby with Down Syndrome. Down Syndrome isn't an inherited condition, it's a genetic mutation, so incest doesn't increase its likelihood. An older mother increases its likelihood, and Precious is very young. I believe that this plot development, which belongs in a sci-fi movie, is just meant to add to the atmosphere of tragedy and gloom around Precious's life so far. She's physically abused! She's sexually abused! She can't read! She's poor! She had a baby and is pregnant again...AND, her kid has DOWN SYNDROME. WORST THING EVER. Quishay is not shown smiling or interacting with Precious and is not filmed in the loving way that her second child, Abdul, is filmed. (It's true that Quishay doesn't live with Precious for most of the movie, but number one, no one forced the writers to write the story that way; and, number two, we could have had shots emphasizing Quishay's cuteness and lovability when Precious gets her back at the end of the movie.)

The movie Precious is hateful to people with Down Syndrome because it uses Down Syndrome as a shortcut to say "Precious's life is horrible." At the beginning of this post I listed two facts about disability. This movie exploits fact #1, nondisabled people's discomfort and revulsion about disability. That is an immoral thing to do. It is incredibly disingenuous to claim that the portrayal of Quishay is somehow legitimate because "it's harder to raise a kid with Down Syndrome." This isn't about difficulty, it's about prejudice and using a disabled child as a horror-movie monster.

I am so tired of this. I call it "the harder fallacy." It sucks because when you're trying to point out that someone is being prejudiced, you get totally knocked off balance by a bogus argument about whether the victim of the prejudice, or their parents, has a hard time. But it's not about that. They're two totally different things.

eta: I'm pretty bad at science, I apologize. Apparently it's not as unlikely as I thought for a teenager to have a baby with Down Syndrome. However, my points about the portrayal of Quishay still stand, and would stand no matter what disability she had.

Is Kevin Girardi a jerk?

I slept really badly last night and for some reason I started thinking about Joan of Arcadia, which is a sort of sappy TV show that I loved way too much last year. Anna at FWD/Forward has made several posts about the show's treatment of disability, which is really good.

To sum up: Joan's brother Kevin was a really conventionally masculine, popular teenager who was going to get a basketball scholarship, but was in a car accident in his senior year of high school and became paraplegic. The show starts a year or two after that and Kevin has been depressed for a while, but during the course of the show he gets a job at the local newspaper, discovers he's a talented writer, starts dating again, etc. He's sad that his old plans for his life aren't feasible anymore, but it's obvious there are still a lot of things he can accomplish and get excited about.

Yeah, so anyway, there's one scene in the first season where Kevin is dating a girl he works with at the newspaper. They're lying on the floor making out, and he says, "wait," and flips them over so he's on top, and they continue kissing.

Someone--I think the Television Without Pity recapper for the show--reacted to this scene by thinking that this was a creepy and sexist thing for Kevin to do. When I read this I was surprised, because my reaction to the scene was "Go Kevin." I thought that if Kevin really liked being on top before his accident, he shouldn't just acquiesce to not being on top because that's the expected/more convenient position for someone who's paraplegic.

This reminded me of a comment I read on the Internet Movie Database board for the documentary Murderball. IIRC (I have to go really soon, and shouldn't even be posting right now), the comment said that viewers of the movie are willing to cut the subjects a lot of slack for their sexist and generally unpleasant behavior, because they're wheelchair users, and it seems cool to see them acting like any other guys.

So, I don't know. I shouldn't have started this post because I don't have time to finish it. People with disabilities should be able to be individuals and shouldn't be held to a higher standard than non-disabled people and be expected to be saints. Guys with disabilities shouldn't be expected to be extra sensitive and feminist. On the other hand--that's not really true, all guys should be expected to be feminist.

I don't think it's ever jerky for someone to want to be on top, in real life. But given how Kevin is portrayed on the show in general as someone who is mourning the loss of a ton of stereotypically-masculine-guy privilege, I don't know if that scene was supposed to be about him being sexist, or about him being himself. I mean, if people are sexist, then I guess we shouldn't want them to be themselves.

the joy of speakerphone

roommate's 10-year-old brother (on speakerphone): Amanda, have you figured out that Laura's a nerd yet?
Amanda: Yeah, I...actually, the other day, she said she wanted to start a band about robots, so yeah.
roommate's 10-year-old brother: Are you serious? That Battlestar Galactica thing? That's kind of a new low, even for her.
Amanda: Yeah, I know, it's really sad. I hope you're nice to Laura when she's home, you know she has a rough time at school.
roommate: Stop talking about me like that to John! He's going to think I'm a loser. I have so many friends, John. I have a lot of friends.
Amanda: No, you don't, you have, like, one and a half friends, and Lee Adama doesn't count.

(I want to adopt this kid, he's magic. Also when Laura was talking to her mom on the phone, her mom said something that Laura thought was really obvious, and Laura said, "I don't live under a rock, Mom. I'm not Patrick Star.")