The Softer Side of Searing

The New Yorker has been kind enough to publish my letter, where I point out that Autistic kids don't have black mirrors for eyes. (Their version // my initial version.) I really appreciate them doing this because I hope it will make their readers consider the effects of dehumanizing language. I don't refer to my hurt feelings, but to the way people may behave after being exposed again and again to the idea that Autistic kids are bad tempered, bad to be around, and different to the point of being inhuman.

I also hope that the wording of my letter will remind people that autism is just one of the many disabilities that exist. I feel this is an important thing to remember, both for Autistic people's benefit and for the benefit of people with other disabilities.

When the New Yorker first edited my letter, I didn't like some of the changes they made. I worried that they would not publish my letter if I argued, but the Letters Editor was very nice and accommodated the 3 requests that I had.

However, I want to point something out. I summarized the black mirrors quote this way:

Shapin claims that Autistic children's eyes "are not windows to their souls, but black mirrors."

The New Yorker wanted to change it to:

Shapin mentions the struggle of parents whose autistic children’s eyes "are not windows to their souls, but black mirrors."

My original letter did not mention parents at all, nor did it need to. It was only about a 9-word phrase describing Autistic kids' eyes. Knowing that this phrase appeared in a sentence about parents does not explain or excuse it. It is just as bad to write, "Autism parents suffer because their kids have black mirrors for eyes," as, "Autistic kids have black mirrors for eyes"--and for the purposes of my letter, I don't see the value of one over the other.

I explained why I did not agree with the edit--"Bringing up parents' 'struggle,' when it's not relevant to my point, is something that I don't agree with because I think media discussions of autism are already biased toward the experiences of parents. (Of course their experiences are important; they are just not the only perspective, and they're often treated that way.) That line doesn't represent how I would write."

It's a bad habit the media has when discussing autism--always inserting the perspective of parents, whether or not there is a reason to do so.  I've read a lot of great deconstructions of this by Autistic people, but my favorite is Zoe's parody article from a few years ago, Person With Autism Manages to Do Something:

How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.

Anyway, I suggested that if the editor wanted to provide context, it would be better to quote more of the review. Now the letter includes the entire sentence that the black mirrors line is from:

It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.

This edit is okay with me, but does have an unfortunate result. My letter begins with this quote, but only talks about black mirrors--giving the impression that there's nothing to say about the rest of this quote. However, it's actually pretty awful from beginning to end. I just decided to write in about "black mirrors" because it was the most obviously wrong and offensive part of the sentence, and I felt I could write something very short about it.

I want to address the rest of the sentence, though, except for the part about the "searing experience." If people feel "seared" by having Autistic kids, I can't argue with that--it's how they feel. I feel "seared" by reading that it's "searing" to have a kid like me--and that's how I feel. If feelings can't be criticized, it's a tie. However, I can and will criticize the list of reasons that Autistic kids are "searing."

After "black mirrors," what stuck out to me is the self harm--specifically the construction, "It's a searing experience to have a child who self-harms." I'm afraid that this is such a common construction, when writing about autism, that it's not obvious what is wrong with this picture. Imagine the following description of a violent accident:

Kendra, a kindergarten teacher, slipped on the steps of her house; she fell and cracked her head open on the sidewalk. It was very upsetting to all the people on the street to see Kendra lying there. Kendra's husband fell into a deep depression, unable to deal with what had happened. Kendra's students were very distressed when she could not come back to work because of her brain injury.

Hopefully this example gets the point across. Everyone has good reason to be seriously affected by Kendra's accident, especially her husband. But we don't expect to have their perspectives emphasized to the point that they entirely drown out Kendra's perspective of her situation. Her physical condition is only described in terms of its effect on others, and her feelings aren't described at all.

That is just a ridiculous way to describe something bad happening to Kendra--because first and foremost, it happens to Kendra. It does not happen to the people around her, no matter how much they love her. I can't speak to every person's experience of self harm, but in my experience it feels pretty bad internally--and physically, of course, it hurts a lot. No one else's reaction to self-harm is as "searing" as being in that situation yourself. To frame a child self injuring in terms of how someone else feels about it is unbelievably unempathetic to the child; and when it happens over and over in the media to the point of being unremarkable, that is really disturbing.

However, as I read the multi-faceted "searing" quote again and again, what stands out the most is the implication that autism is volitional--that Autistic children are being Autistic on purpose, just to torture the people around them. I addressed this idea a few years ago in my post Behavior vs. Ability. I was saying that those who are more empathetic to a disabled person will usually see the person's actions/inactions in terms of what they are not able to do, the fact that they may have to do things in alternate ways, and that they are trying to cope. On the other hand, there's the colder view that the actions are all there is--the person "prefers to do this," "refuses to do that." No reason is given, and no acknowledgment is given to the idea that a reason might exist. The person is just being bad.

It's subtle. But look what Shapin says:

a child who doesn’t talk

Why not "a child who can't talk?" Does Shapin mean to say that kids who can't talk are just refusing to talk? Does he really believe they can talk?

a child who demands a regularity and an order that parents can’t supply

Why not "a child who needs a regularity and an order that parents can't supply?" I doubt the child is drawing up a contract of "demands" like a rock band demanding green M&Ms in their rider. The child is upset when things aren't regular and orderly. The child is struggling, not "demanding" things.

(Imagine if the New Yorker had wanted to edit my letter to discuss "the struggles of children with black mirrors for eyes" instead of "the struggles of parents who have children with black mirrors for eyes." It's really too bad how surprising that would be.)

And how come the child "doesn't" talk, but the parents "can't" supply order? Why not say "the parents refuse to supply the order the child needs?" Because Shapin has empathy for the parents and understands there are things they can't do--but the child is just a mirror-eyed cipher.

Well, I'm just spitballing here--I don't want to go point by point through the whole sentence and edit everything to make it sound more like the child is in fact disabled--not "demanding" the things they need to function, not refusing to talk to "sear" their parents, not self-harming just for the hell of it. At that point, the sentence would no longer be as damaging to Autistic kids, but it still wouldn't be very good. ("This is the worst writing I've ever seen in the New Yorker," was my mom's comment, although her judgment may have been affected by all that searing I did to her.)

Anyway, I just wanted to give the searing sentence a more thorough look, and now I'll shuffle off with 2 boring postscripts:

1. I want to be very clear that I was not offended by the idea that Autistic kids' eyes look black, or that they look different from other people's eyes. I was offended by the context and implications. I don't like the resemblance to the Black-Eyed Children urban legend and to the purely black eyes (including black sclera) in a lot of ghost/alien/monster characters in movies and TV. I don't like the idea that our body parts aren't flesh but metal, or the idea of us having "nothing behind our eyes" where other people have souls.

However, lots of people do have glass eyes, metal spines, and so on. There's nothing supernatural about that either. When I jump on this quote like, "How dare you say this!" it is NOT because I think there's something horrific or monstrous about anybody who really has glass eyes, has very different looking eyes (no pupils, etc.), or doesn't have any eyes at all. It is because of the context and the tropes it's drawing on. And while the insult was specifically aimed at Autistic people, I don't think it does blind people any favors either to talk in such a weirdly tragifying, spooky way about eyes that look different, or eyes that do not focus and make eye contact.

2. It's hardly worth responding to, but Shapin says some really false and insulting things about the neurodiversity or Autistic self advocacy movement. I assume these are regurgitated from the book. For a smart and clear self advocate response to In a Different Key, that explains exactly how untrue these assertions are, I recommend Ari Ne'eman's review.

There used to be a guy who went to my school, named James, who was blind. One reason I thought James was cool was because of his competence and confidence in asking people for help. He would walk into a room and ask what he needed to know about what was in the room. (I don't mean to act like this is some kind of unusual quality in a blind person, but I hadn't met anyone who was blind before so it seemed really cool to me.)

Once I was talking to Noah about James and Noah told me something he had heard from James's former roommate. James's roommate had asked, "What do you imagine it would be like to be able to see?" and James said, "It would be like having a hand that could feel everything in a room all at once." This has always stuck with me and I don't think I realized why until I watched this video that's been going around tumblr.

The video is an ad for a marketing firm, called "The Power of Words." It depicts a blind guy begging on the street and not getting very much money. A woman comes up, grabs his sign, turns it over, and writes a new message on it. For the rest of the day, the blind guy makes tons of money, and when the woman comes back later he asks, "What did you do to my sign?" She says, "I wrote the same thing with different words."

This would obviously be patronizing no matter what the sign said, but I found the words on the sign to be the most interesting part of the video. The guy's sign originally says, "I'M BLIND, PLEASE HELP." The woman changes it to, "IT'S A BEAUTIFUL DAY AND I CAN'T SEE IT."

This illustrates exactly what non-disabled people want from disabled people.

A lot of blind people are unemployed either because they weren't taught the skills they need to be independent, or aren't given the proper accommodations for getting and keeping a job. I think it's reasonable in our society for a disabled person to express frustration that their disability keeps them from getting the things they want, and to ask for help from other people because of their situation. So although I find a blind beggar to be a questionable subject for an inspirational video, the existence of such a person is realistic and I don't feel that I can condemn the video just because it's about a disadvantaged disabled person asking for money.

However, we're told in the video that the fact that this guy can't work and needs money isn't enough for people to want to help him. People only want to help him when he comes out and says not only, "There are things I can't do because of my disability and that sucks," but, "My experience of the world sucks on an existential level, not just a practical one, because I can't experience the world the way non-disabled people can."

I think one of my Autistics Speaking Day posts was about my desire to always add the phrase, "It's no big deal," after telling people about my disability, even though it actually is a big deal. This is because I don't trust people to understand the difference between the fact that there are some bad things about being disabled, and the idea that my disabledness is tragic in some overarching, objective way. Or rather an overarching, objective, spiritual way, if you know what I mean--the idea that disabled people are less human or less alive due to being disabled.

I think the most negative view you could reasonably have about being disabled is that it makes your life really hard, and it makes you upset a lot, and that sucks. This isn't necessarily my view but I would never criticize another disabled person for having it. But that isn't enough for non-disabled people. They have to feel that disabled people are missing not just the ability to have a job or feel secure, but that we're actually missing a vital part of being alive on the pure basis of our impairment.

I realize now that what James said stuck out to me because I heard it in the context of a society where stories about blind people are often about how they don't get to look at sunsets, or colors, and how tragic that is. I think I remember reading a children's book about a kid who "helps" his blind friend by describing different colors to him in terms of emotion. But if you're blind, the really cool, lovely details of life don't have to do with visual information because that just isn't a part of your life. Not getting to look at a sunset really isn't a big problem. What I liked about James's quote was that he thought of problems due to blindness in very practical terms--because he was blind, he didn't immediately know what was in a room the way sighted people did.

But for sighted people, this isn't enough.

Blind people have to say that their day is worse on an experiential level because they are blind.

And I think this duality--objective impairment, and the nebulous, often unlikely connotations of misery that are attached to it--explains a lot of the things non-disabled people do to disabled people, and why they seem so ridiculous when you look at them straight on.

Tangerine

When I was a kid I remember encountering fantasy books that took place in societies where people with blond hair and pale skin were considered to be unattractive. Early on, before the character development, the blond main character would be beating him- or herself up for being so "ugly" and "freakish." I enjoyed those books at the time, but in retrospect it strikes me as cheating because the reader gets to enjoy the angst of having the main character think that they're ugly, but doesn't actually have to identify with a character who has dark skin or dark hair, the traits that are considered undesirable in real life.

I just finished reading Tangerine by Edward Bloor, a young adult book that does the same thing with disability. The main character, Paul, is said to be "legally blind" but the implication is that this either hasn't been true since he was a kid, or that it doesn't really affect him that much. People react negatively to Paul's label of disability, and his glasses (which are apparently unusual-looking), but there are no instances in the whole book of Paul not being able to do something, or needing help, because of his vision. He describes things he sees which are quite far away (for example, birds flying and fields that he sees out the car window). His disability seems to exist in name only.

I've had this book since I was 14, because I bought it and never read it. I finally decided to take it to camp so it would stop crowding up my bookcase, and when I opened it to a random page I was surprised to see the word "IEP." It turns out that Paul's IEP is an important plot point--which is interesting, right? When I had an IEP I didn't know I had one, so I don't know whether IEPs are portrayed accurately in the book. They are portrayed as something that sucks.

The implication is that Paul has never had an IEP when he moves to Florida at the beginning of the book. (He's about thirteen or fourteen years old and has been visually impaired since he was five.) His mom mentions to his new principal that Paul is legally blind, and is told to fill out an IEP. Then Paul is given a guide at school, who he blows off saying "I can see fine," and is prevented from playing soccer because it would be bad for the insurance to have a legally blind kid on the team. Paul loves soccer and is really good at it, so he flips out and takes extreme action so that he can transfer to a different school and intentionally keep them from realizing he's disabled. The rest of the plot comes out of Paul's experiences playing soccer at at his new school where most of the students are poor and nonwhite (Paul is rich and white).

Throughout the book, the implication that Paul is impaired in any way is portrayed as laughable. In the narration, Paul keeps commenting that he hopes no authority figures from his old school see him and exclaim, "That kid's handicapped! He needs an IEP!" (Handicapped is the word the soccer coach used when explaining Paul couldn't be on the team; Paul never calls himself handicapped, disabled, blind, etc., but instead refers to "my glasses" as the thing that sets him apart.)

Paul's label of disability is used against him by his family as well as the school. It is obvious from the beginning of the book that Paul's brother has problems with violence and crime, but that their parents play favorites and ignore those problems. When Paul points out things that would reveal what's going on with his brother, his parents remind him that he can't see very well and probably misunderstood. I feel like this would be cool if Paul actually was impaired in any real way--I just read The Girl With the Dragon Tattoo, and I think Larssen does a fantastic job portraying Lisbeth as someone who is unfairly labeled and discriminated against due to her disability, without implying that her disability isn't real. But in Tangerine, disability is just an idea that you use to hurt someone, there's no real disability.

(I also feel like when you spend a lot of time saying "but I'm not really disabled! That's hilarious that you would say I'm disabled!" you start feeding the specter of those Really Disabled People who exist somewhere, who it would be so terrible/outlandish to be associated with.)

There are a few instances in the book that seem to imply a more positive identification with disability--or some kind of identification, anyway. Paul thinks of himself as a circus freak because his brother tells people that Paul became blind from looking at an eclipse straight on. (No prizes for guessing how Paul actually became blind.) Paul says that he doesn't mind being a racial minority at his new school because "my glasses" make him feel like a minority anyway--which is obviously problematic but does imply that disabled people are a minority group.

The most striking instance is when one of Paul's new friends is talking about his (the friend's) brother, Luis. Paul's friend talks about the knee injury Luis got as a kid, his ambitions, and the fact that he played soccer in middle and high school. When Paul asks what position Luis played, the friend replies, "He played goalie [Paul's favorite position], because he was handicapped."

Paul has a strong reaction and imagines that his friend might be making fun of him by using the word "handicapped," but realizes that he isn't and marvels that his friend neutrally used the word. Luis is a heroic character whom Paul admires and learns from, and I don't know exactly why Bloor decided to make him disabled and a goalie. The commonality between Luis and Paul is never discussed again.

I like reading books written for kids (although it was embarrassing when my 14-year-old camper said, "Oh yeah Tangerine, I just read that book for school") and I like the style of this book and think it has an interesting plot. But I'm sort of frustrated that Bloor brought in things like Paul's IEP and his parents undermining him because of his disability label, without making Paul actually be impaired. I feel like it could be a book that would humanize a disabled character and show how he is discriminated against, without being an "issue book" about ableism. But Bloor just makes it a book about a non-disabled kid who's inexplicably treated like he's disabled.

some messy things, invisibility, etc.

(edited because I was pretty consumed with anxiety about these possibly being hateful things to say, but I thought that parts of this were good, so I chopped it up)

Being brutally honest: I'm uncomfortable around people who have Real Disabilities. Well--I'm uncomfortable around a lot of people for a lot of reasons. It's sort of a spiraling, compulsive fear. If the person belongs to an oppressed minority, I get anxious and act/look really strange because I'm afraid they'll think I'm prejudiced against them (and this obviously feeds itself, "look, I look so strange, they'll think I'm afraid of them, fuck I'm freaking out, I can't make eye contact, shit, do a facial expression, try to look depressed and distracted, okay"). This can happen if it's a minority I don't belong to, which can certainly be called racism, transphobia, etc. (and I don't think it's right for me to call it something else, if I am reacting differently to someone because they're a person of color, trans, etc.--that is what it is, in practice). However, it can also happen with the two minorities I invisibly or semi-invisibly belong to--gay and disabled. And in those cases, it is kind of a mixture of the ordinary compulsion and anxiety, and also a desire for kinship that I become anxious about because I think it's unseemly and I don't really belong.

The most common way for a person to be visibly same-sex-attracted is if they are romantically paired with someone of the same sex. I guess relationships are like wheelchairs. I know I'm gay, and I'm more inarguably gay than I am inarguably disabled, I suppose. If I was accused of being homophobic, I could just produce a statement of fact: "I can't be homophobic, I'm gay."

Actually, one time, at academic summer camp, this girl who I'd just met made some joke about kissing me, and I froze up and looked really uncomfortable, and she laughed to her friend, "I probably shouldn't be scaring young heterosexual girls," and then left. So that's an occasion when I wasn't able to produce the statement, but I think I'm better now. Or am I? Probably not. My nightmarish employment at a drive-in movie theater the summer before last, which culminated in derealization and a processing speed slower than molasses while I was cashiering (I couldn't recognize the food), which resulted in me getting yelled at by the same person who'd caused all my anxiety, who ironically was a special ed teacher, but didn't know that I was "special," and I didn't know how to explain...wow, I don't think I even realized how ironic and intersectional that story actually is. But anyway, it was in Cape Cod, so lots of gay couples came in all the time, and this middle-aged lesbian couple started working there, and I just wanted to talk to them so bad, I wanted them to like me, or something, and know I was gay. Especially the one who was a special ed teacher. But how do you just say "I'm gay?" Most of the people who worked there didn't especially like me, so why should they like me? When I tried to talk to this woman, I just misunderstood the things she said, and she rolled her eyes.

Also these two beautiful girls who came in and ordered sandwiches and made out for a while and I tried not to look at them, and then they said they didn't want the sandwiches. I was supposed to yell at them for this, but I just couldn't even look at them. Seeing all these beautiful, happy lesbians just made me feel like less of something. Like, even if I was able to produce the statement, was that going to make any of these people say, "Oh, okay, you're one of us?" How am I one of them? I haven't even had a relationship. I'm a defective gay person, not because I'm invisible, but I'm invisible and defective for some of the same reasons.

Yeah, so anyway, yesterday the guy who lives across the hall from me moved back in for spring term. I was introduced to him. He's the only person at our school who is blind. Sometimes I have watched him putting on his coat and putting his tray away in the dining hall, because of the way he moves. But this isn't a real reason to like someone, because he didn't choose to have to develop those ways of doing things, and would probably be offended that I like them. Also, one time in the dining hall he asked me what the ingredients in the omelets were. I am curious about this because I rarely ask people for the things I need; I wonder if it used to freak him out, and his teachers or parents made him practice doing it, or if he's always felt confident about it, maybe because everyone can see without him telling them that he has a good reason for needing things explained.

Basically, I want to talk to him so much that I maybe never will, because it's probably offensive. On the other hand, I also feel concerned about ordinary people things, like not knowing if I should identify myself when I say hello to him, or if I should assume that he can tell. If a lot of people have that problem, maybe people don't talk to him very much. So in a roundabout way, even if I complain that it sucks for me to have to explain that I'm disabled (i.e. I don't explain, and the results of that suck), he definitely has it worse because it's the first thing people notice.

So I don't wish I was Real. That's a stupid thing to wish. Also, being Real isn't possible for me. Even if I didn't try to pass at all, Real ASD doesn't exist because it doesn't look like anything. Some people would treat me like I was "special" (whether ASD or intellectually disabled--although, if an ASD person is read as intellectually disabled, does that mean they're passing?). Other people would think I was high, or traumatized. Other people would yell at me and try to grab me to see my reaction, like when I was a kid. I don't want that to happen, but even if I let it happen, it wouldn't mean that those people thought I was Real. They just wouldn't be thinking of me in words at all. With ASD I feel like there's being fake, or prey, or disorderly conduct. Or being read as intellectually disabled. Or even more than one of those--intellectually disabled people can be prey, after all. But there's no Real option.

The other day I snapped at my roommate because she didn't answer me when she was on the phone. My roommate only has one working ear, so when she is on the phone, she can't hear anything else. I've known her for three years but I rarely keep this in my mind (except in the last few days, when I've realized how shitty I am about it). I guess she could maybe be Real if she made an effort to tell people, but it doesn't affect her that much, except on the really low level of people like me snapping at her without thinking, or thinking that she's ignoring them when her good ear is turned away. At the same time, a low level builds up over your lifetime. My roommate's Facebook description of herself says, "I probably didn't hear you." But she doesn't identify as disabled, and if she did, I'm not sure what people would think.

It's hard to say what's Real. I just know that I'm not it, and that as frustrating as that sometimes seems, it's probably good, because if I was Real, people would make everything about my disability. Just like I do to Real Disabled people when I make up stories in my head about how they probably hate me.

The end.

On genes and being flip and stuff

I don't know anyone who is blind, but I have a strange relationship to blindness because it's in my genes, and I decided a few years ago that it would be immoral for me to have biological kids because I don't believe in genetic engineering or selective abortion but I don't want to create a kid who I know will have a rough time. I mean, kids can have a rough time for a lot of reasons, and I don't really think it's moral to create a kid if you can't naturally have one with your partner*, so I think I would have come to the same conclusion anyway. But I started thinking about it because of my genes.

Also, I used to always wish I was a boy, so it would be okay for me to like girls and be overinterested in things, but if I was XY I actually wouldn't exist. Whenever my mom thinks I am being too "flip" about disabilities, she reminds me that her brother, who has the syndrome we carry, told her to abort me if I was XY. I don't know the syndrome, or my uncle, very well. I just know it gets worse as you get older. It's called Ocular Albinism Nettleship Falls and when I try to look it up on Wikipedia there's just a scientific explanation and it doesn't really help me understand what happens to a person who has it. But I guess that you have pretty bad vision when you're a kid, and it gets worse until, by the time you're in your twenties, you're legally blind.

The thing is, I feel like my uncle telling my mom to abort me is not really proof of anything innate about blindness. When I was younger I used to think that I was depressed because homosexuality is toxic and I used to think that my parents should have taken me to aversion therapy or something when I was still unformed enough that it could have changed something. I think my uncle has had a hard time because things were harder for pwds when he was a kid, and also for other reasons that aren't actually related to his disability, but it's easier to imagine that they are.

The reason my mom told me I was being flip is probably that I was being flip. I used to be on this skin medication that's really intense, and if you get pregnant while you're on it, there's a high likelihood of birth defects (according to Wikipedia, the usual ones are "hearing and visual impairment, missing earlobes, facial dysmorphism, and mental retardation"). There's this government program where everyone who goes on the medication has to go on two forms of birth control, one of which has to be the Pill. I've actually been on the Pill quite a lot considering I'm a homo--I was on it for a year or two for my skin when I was 14-15, and then I was on it for several months when I was eighteen because I was on this skin medication. I really don't like taking it, for aesthetic reasons--I just think having a fake period is weird--and besides, it leads to me crying a lot the day before my fake period starts, which I don't enjoy.

This is frustrating because my skin got super horrible while I was in the UK and it hasn't improved much since, but I really don't want to go on the medication again because I don't want to go on the Pill. It makes me sort of mad that I'm not allowed to just say I'm gay. I feel like being gay is considered to be some personal thing that I'm supposed to keep to myself in medical settings because I have to follow all the straight person rules anyway, because every XX person must be having sex with XY people.

Anyway, I was complaining to my mom about this, and I said, "isn't it kind of weird that the government is allowed to legislate against the conception of disabled babies?" and my mom said it's so people can't sue the government if they have a disabled baby, and I said, "well, can't I just sign a form saying I don't care if my baby is disabled?**" and then my mom told me that I was "flip" and "spoiled" for saying I didn't care. She was saying how hard it is if someone's poor and they have three kids and one of the kids is disabled, and I said we need better government services, and my mom says the government doesn't have unlimited resources, which is true although I do think that if stuff was better organized then we would have better services than we do now. My mom also said that I have a biased view because if I read disability blogs, then I only see the perspectives of people who are okay with being disabled.

I guess it is true that I'm flip as all get-out, but at the same time that's kind of a preemptive strike. I think I'm trying to make up for people who aren't flip enough, if that makes sense. I mean, I think our culture has this huge, heavy idea of what it's like to be related to a person with a disability, and that results in discrimination and abuse because people think that it's this difficult experience they can't possibly understand, so if someone kills their kid, or abuses their kid, or publicly talks about their kid in an abusive or threatening way, you're not supposed to react to it as if it's a cut-and-dry situation. It's supposed to be "flip" for me to say that Alison Singer (to use the classic example) did something fucked up, because I'm supposed to be intimidated by Oh My Gosh She Has An Autistic Child. I'm supposed to apply myself, to put a lot of effort into understanding the complexity of her situation. But the truth is, in my opinion, it is not complex, and it's offensive to say that it's complex.

The reason I'm talking about family members and not actual pwds is because I think our culture doesn't think much about pwds ourselves and just thinks about the people who have to take care of us. I really liked Getting the Truth Out, which was a website that deconstructed the portrayal of nonverbal people, and was basically a nonverbal ASD person writing, "hey, I'm actually a person, and way I look and the kinds of help I need are just my life, but they can be written about in really shaming language;" please, as I would say, be human, and relate to people as other humans instead of freaking out about how they seem different. Anyway, I linked it on my blog one time, and my mom said, "well, think about it--someone has to take care of that person." Which is like--so what? The person who made Getting the Truth Out was Amanda Baggs, who I believe is supported by people who do support staff work for a living, so--what's the problem, we're supposed to be upset that people have jobs? How does that make Baggs's assertion that she's a person any more complex?

So, yeah. I think that I have a tendency to act like disability isn't a difficult thing because there's a tendency in the larger culture to inflate the difficulty of disability to ridiculous levels so that people can go around doing offensive and evil things to disabled people. So I'm reacting against that, and probably being a brat, but I just get so frustrated.

Sorry this is incoherent, maybe I'll rewrite it later, especially because it's about two subjects, just some disclaimers:

*I feel weird making statements about what's moral but yeah, I think that if you need to use science in order to give birth to a kid, you should just adopt one, because a lot of people already exist who need parents. This isn't because I think that non-XX/XY couples, or XX/XY couples who are infertile, are particularly unfit to have kids. Adoption is having kids. It's wasteful to make more, but it's especially wasteful if it requires extra effort and money to do so. I'm not trying to legislate this but I feel like people let their distaste for adoption (which is really fucked up) keep them from making the logical and ethical choice.

**I'm never going to get pregnant anyway so it's not like I was seriously saying that I "don't care" about having a kid with birth defects. I personally wouldn't get pregnant in a situation where I knew that was likely; I'm just saying it's weird that people aren't given the choice to say they don't care, because they should be allowed to not care if they want.

***This is not actually a disclaimer, just something that I think is funny: some of the things disabled people's parents say are the same things liberal people say when their kids are gay. Straight people don't like having gay kids, and if they're openly homophobic, they just say this straight out, but if they're not, they tend to express their unhappiness by stating a ton of facts, such as, "gay people can't get married and have non-adopted babies," and, "if you are gay people might attack you," and, "it is harder to find a relationship if you're gay." The upshot of all these facts being, it is difficult to be gay. Thanks for the information, you guys! I had no idea!

From the limited sample of me, I think that when straight liberal parents constantly repeat facts about how hard it is to be gay, that makes it harder for their kid to be gay. And I think that some of the same stuff is true when it comes to disabilities. Stuff is hard, but emphasizing how hard it is can be a cover for prejudice.

Things Not Seen by Andrew Clements

This was the book I read and it only took me four days and I wasn't even spending that much time reading, so it was a pretty good experience. My excuse for why it was okay for me to read a YA book is that it is disability-related. Things Not Seen is about a 15-year-old boy named Bobby who wakes up one morning and realizes that he's invisible. His dad is a scientist who gets excited about investigating Bobby's condition. Bobby's parents want him to stay inside so the media doesn't find out about what happened, but Bobby gets bored, so he starts figuring out ways to go outside without people noticing that he's invisible.

The book doesn't do inconsistent things like the Animorphs and Twilight books, which have people morphing into animals while wearing cutoffs or leotards or underwear. If your body developed a weird property like morphing or invisibility, clothes would not be included. So Bobby has to either cover his whole body with scarves, sunglasses, and gloves, or he has to walk around naked. Large sections of the book describe how Bobby learns to manage his condition, and how he feels about it. He likes being able to spy on people, but hates the fact that he can't talk to anyone or pick anything up.

One day Bobby is wandering around naked and he feels lonely, so he decides to talk to a girl who is blind. The girl, Alicia, soon figures out that he's naked, so he has to tell her the truth. Alicia's dad is a scientist like Bobby's dad, so the two dads pair up and do research on Bobby. Bobby and Alicia get bored of this and do some sleuthing around. This is basically the plot (surprise surprise, Bobby becomes visible again at the end) but it feels like background. There's more focus on Bobby's coming of age as he fights to be in charge of his life despite his difficult condition. But it's mostly a love story. We get the impression Alicia is Bobby's first close friend, and besides, he has a crush on her before he even talks to her. The friendship develops, but the crush just slow-burns until the loose ends of the plot have been tied up. The book ends before they officially become a couple, but we know that Alicia and Bobby really like each other and are going to get together.

I don't know anyone who's blind, so I am not likely to be sensitive as to whether this book is a cliched or offensive portrayal of blindness. Alicia's major personality traits are a)bitterness/sarcasm, b)easy-to-read facial expressions, and c)sensitivity (both good and bad). I guess these are probably stereotypical traits. Bobby talks about how he loves watching Alicia ride in a cab because he can see her react to all the sounds she's hearing. If I was blind I would probably think this is like intellectually disabled people meeting every new day with wonder, or ASD people being really good with computers. From the perspective of someone with very little experience, I thought it was a nice detail and Alicia was a good character, but I can see how someone might view it as trope-y.

We learn a bit about the assistive technology Alicia uses, which is cool.

Something that was sort of good and sort of bad is the whole theme of the book, articulated in the title. Much is made of how Alicia "can't see herself" doing the things she aspired to before she became blind. She is scared of "disappearing." Obviously Bobby's invisibility is sort of a metaphor for how Alicia feels about being blind. And also, while he is invisible he feels some of the same things. In the last chapter of the book, Alicia sends Bobby an email expressing her love for him and her insecurity that maybe he won't like her anymore because he is no longer disabled. She says, "I liked being able to help you because usually everyone helps me." Alicia calls Bobby her "invisible mirror" because, through helping him and falling in love with him, she has begun to "see herself" again.

I guess it's probably bad that not being able to see yourself because you're blind is equated with feeling like you have no future. But I'm glad that they portrayed Alicia (and Bobby while he's invisible) as having that kind of anxiety and inertia. I've struggled with similar issues, mostly related to being gay. It's overwhelming to know that your life is going to be different from other people's lives, especially if you don't know adults who are like you. In one scene, Alicia kills time while Bobby is stealing information from Sears (it's a long story) by inquiring about employment opportunities for blind people. She ends up talking to a Sears employee who is blind, and some other people who are very comfortable with blindness. This is obviously a big deal for her, and she seems both happy and upset about the experience. Even though it was couched in weird disability-as-metaphor language, I really liked the "seeing yourself doing things" aspect of the book, and was moved by the way Alicia came to feel, once again, like a real person with abilities and a future.