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.)
30 November, 2010
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?
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.
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.
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.
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.
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)
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)
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