I got baptized this morning which was, you know, swell (can't really talk about it), but one of the priests told my parents and me the best story and I could only really sputter in response because I guess you would have to know me to understand why I found it such a wonderful piece of information.
The priest's daughter (who is hearing) is a first-year in college and just changed her major and life plan. She wanted to teach D/deaf students, but then she took a class on Deaf culture with a Deaf professor and learned that a lot of Deaf people don't think that hearing teachers should teach at schools for the D/deaf. After she learned about this, she changed her mind about wanting to teach D/deaf students, and decided to major in sociology instead of special education.
It was so nice to hear about someone who is so young but is already so ready to take into account what other people feel and have to say. As a disabled person I wish everyone who wanted to contribute to the lives of disabled people was willing to listen to the disabled people they want to help. And as someone who wants to contribute to the lives of people who have disabilities different from mine, I really hope I can live up to the priest's daughter's example and listen to what other people want and need, and accept it when the contribution they want and need from me is for me to not be involved.
Showing posts with label deaf. Show all posts
Showing posts with label deaf. Show all posts
02 January, 2011
01 December, 2010
Passing as Ethics: a primer
Passing as Ethics
So, passing as ethics is a term I invented and I use it a lot. It’s at the core of a lot of the stuff I write. In retrospect, I wish I had said “passing as functioning” or “passing as cure” because I think that would be more inclusive and cover more ground. Originally I thought that passing as ethics only happened to people with autism, but as I learned more I found out that it was more pervasive than I could ever have imagined.
Here are some passing as ethics values. I’m mostly writing this as if a professional is saying it, but disabled people can totally feel most of this stuff about themselves and I certainly did for a long time. I think it’s a very basic part of life for most people.
1. It is better for a person with a physical disability to walk without any visible mobility aids than it is to use a wheelchair, crutches, or cane--even if the person finds it painful or tiring to walk unaided, and/or is danger of falling.
2. If someone’s disability causes them to have an unusual gait, this is a problem, and it would be an improvement if their gait could be changed to look more normal, even if this didn’t make the person walk any faster or more easily.
3. Habits that mark someone as a person with an intellectual disability or autism, such as flapping hands, are inherently bad, and people who do them should be trained not to do them.
4. If there is a conflict between someone with autism and someone without autism, it’s the person with autism’s fault. If a person with autism gets bullied, this is evidence of why #3 is true; if no one had been able to tell they had autism, this wouldn’t have happened.
5. If someone misunderstands a person with autism, it is because the person with autism didn’t express themselves right.
6. Deaf and hard-of-hearing people should learn to lip-read. Hearing people need not learn sign language.
7. So basically, people with disabilities should always try to communicate in a way that is comfortable for people without disabilities, even if it makes the people with disabilities uncomfortable
8. To sum up, any habit, style of movement, facial expression, interest, feeling, word choice, way of pronouncing words, way of sitting, way of communicating, okay you get the idea, that is commonly associated with disabled people is
a. the opposite of success, and must be destroyed to improve someone’s “functioning”
b. morally wrong in some cases--that is, the person who is doing the behavior that’s associated with disability becomes automatically wrong in any conflict
9. If someone who used to look like they had a disability now doesn’t look like they have a disability (to most people), then they are recovered/cured (no matter how negatively it affects them to hide their disability, and no matter how many less visible aspects of their disability continue to affect them).
10. Don’t kill yourself after reading #1-9 because people will just think you killed yourself because it was so depressing to be disabled.
So, passing as ethics is a term I invented and I use it a lot. It’s at the core of a lot of the stuff I write. In retrospect, I wish I had said “passing as functioning” or “passing as cure” because I think that would be more inclusive and cover more ground. Originally I thought that passing as ethics only happened to people with autism, but as I learned more I found out that it was more pervasive than I could ever have imagined.
Here are some passing as ethics values. I’m mostly writing this as if a professional is saying it, but disabled people can totally feel most of this stuff about themselves and I certainly did for a long time. I think it’s a very basic part of life for most people.
1. It is better for a person with a physical disability to walk without any visible mobility aids than it is to use a wheelchair, crutches, or cane--even if the person finds it painful or tiring to walk unaided, and/or is danger of falling.
2. If someone’s disability causes them to have an unusual gait, this is a problem, and it would be an improvement if their gait could be changed to look more normal, even if this didn’t make the person walk any faster or more easily.
3. Habits that mark someone as a person with an intellectual disability or autism, such as flapping hands, are inherently bad, and people who do them should be trained not to do them.
4. If there is a conflict between someone with autism and someone without autism, it’s the person with autism’s fault. If a person with autism gets bullied, this is evidence of why #3 is true; if no one had been able to tell they had autism, this wouldn’t have happened.
5. If someone misunderstands a person with autism, it is because the person with autism didn’t express themselves right.
6. Deaf and hard-of-hearing people should learn to lip-read. Hearing people need not learn sign language.
7. So basically, people with disabilities should always try to communicate in a way that is comfortable for people without disabilities, even if it makes the people with disabilities uncomfortable
8. To sum up, any habit, style of movement, facial expression, interest, feeling, word choice, way of pronouncing words, way of sitting, way of communicating, okay you get the idea, that is commonly associated with disabled people is
a. the opposite of success, and must be destroyed to improve someone’s “functioning”
b. morally wrong in some cases--that is, the person who is doing the behavior that’s associated with disability becomes automatically wrong in any conflict
9. If someone who used to look like they had a disability now doesn’t look like they have a disability (to most people), then they are recovered/cured (no matter how negatively it affects them to hide their disability, and no matter how many less visible aspects of their disability continue to affect them).
10. Don’t kill yourself after reading #1-9 because people will just think you killed yourself because it was so depressing to be disabled.
Finding it (well, sort of)
So I've read the piece Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help (which is a really great piece about how inclusion doesn't work if you always put the non-disabled students in the position of giving charity to disabled students, because they can't develop real friendships) and I realized maybe I should actually go to the domain it's at and see what kind of website it is. It's pretty great! It's a guy with CP and his wife, who do training and speaking about including people with disabilities at school work etc. And some other stuff.
So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.
But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.
For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)
Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.
I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.
When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.
Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").
I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).
To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."
I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.
And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.
So (I'm still on the same topic, you guys) there used to be this post at an "autistic" blog, which doesn't seem to be there anymore, and this post was saying something like, "I don't like when people compare the Deaf and autistic communities, because being Deaf vs. being deaf is about using sign language, so being Deaf instead of deaf is a decision, but there isn't a language that autistic people can decide to use and there aren't two ways of being autistic like being Deaf and deaf are two different ways of being deaf." I'm not naming the blog because I think I may be oversimplifying the post, and I don't want to attribute statements to them that they might not have said, or might no longer agree with since they apparently deleted the post.
But based on my reading of the post? I could not disagree more. My understanding of Deaf culture is very basic, but it seems parallel to Autistic culture for reasons I will discuss below. I don't use a capital A specifically to reference Deaf culture; but I think my reasons for using capital A are because I think there's a big difference between the identity I have now, and the identity (or non-identity) I used to have and the one some people still have.
For people with autism, it's not as simple as sign language vs. lip-reading and speech as a mode of communication. But it is the case, just like for deaf people historically, that lots of people with autism grow up with parents and professionals trying to teach them to communicate in a "normal" way, and just as it is often unpleasant and difficult for a deaf or hard-of-hearing person to have to communicate only through lip-reading and speaking, it is unpleasant and difficult for someone with autism to have to always express themselves exactly as someone without autism would, and understand exactly the things that someone without autism would. (Plus of course there are people in both groups who can't even reach the point that is deemed to be "success," even mediocre success. And those people, from that perspective, are just doomed.)
Here's a simple way of putting, in my mind, what constitutes the difference between being only a person with an autism spectrum disability, and being a person with ASD who is also Autistic.
I used to think of myself as being like a mosaic. I was very smart, I thought, so the mosaic was very complicated--the squares were getting smaller and smaller, and to most people, the mosaic looked like it was an ordinary picture. But it was really just a calculation, and there would always be things that looked a little too sharp or disjointed, parts of the image that required soft curved lines; so occasionally, my mosaic would fail as an image. It would get to be more and more like a real picture, but it would never get all the way there; if you zoomed in close enough there would always be squares.
When I thought of this, less than two years ago, I just thought it was an interesting way of explaining why some things were hard for me. It didn't occur to me how incredibly sad it was that I thought I wasn't a real picture.
Now I know that I'm a real picture, and I live as a real picture. As I've discussed, this is both more and less self-centered than the way I used to live. In one way, the things that I think are appealing and cool and smart, or the things that I'm naturally moved to do, now form the center of my experience in a way they didn't before. I make all my decisions as myself. However, this leads to a calmness and makes me more open to other people (whereas I used to sort of hate most people because I was constantly thinking, "they get to just be themselves and that's allowed").
I could go into a bunch of detail about what "living as a real picture" looks like for me in real life, but that isn't really the point of what I'm saying. What I'm saying is that I imagine a person with autism choosing to live as a real picture (i.e. to be Autistic) is comparable to a deaf or hard-of-hearing person choosing to communicate primarily in a way that is comfortable for them, instead of in a way that is comfortable for other people and difficult for them (i.e. choosing to be Deaf).
To cycle way way way back, I have really enjoyed reading Norman Kunc and Emma van der Klift's website, because they are very smart, but one thing that struck me was Kunc's description of his childhood and adolescence. He went to various types of therapy where he was constantly encouraged to change the way he walked, talked, etc. As a teenager, he tried to keep track of and control situations (like eating and moving in front of people) so that his cerebral palsy would be less obvious. As a young adult, he suddenly realized that, as he puts it, "I had the right to be disabled."
I don't exactly want to say I think it's cool to read about Kunc's awful childhood experiences or deaf students historically being forbidden to use sign language, or the article I linked to a few days ago about someone with CP being forced to get a painful, useless operation because it might make her walk more normally--but there is something extremely powerful in seeing that passing as ethics and passing as cure have been used to hurt so many different people with such different disability experiences. I guess I can say it's sort of a relief. Parents and professionals who support passing as ethics/passing as cure for people with my disability will end up saying, "Oh well autism is different." They basically defend their obsession with passing on the basis that autism is a "social disability," or whatever.
And while I don't think that "autism is different," I think when I started figuring out passing as ethics, I thought I was almost the first person to start figuring out these things, and I thought it mainly related to autism and maybe intellectual disabilities. There's something really deep and lovely--they're not lovely facts, but it's a lovely feeling--about realizing how many different kinds of people have had to put up with this exact same thing, and that people have been fighting it for much longer than the twenty years Autistic culture has been around.
20 April, 2010
Zoe decided to win at life
Why Glee Makes Me Want to Kill Someone
other recommended reading while I'm at it:
Just Stop It (really old Dave Hingsburger post about trying to get ID people to act "age-appropriate")
I am not responsible for your discomfort (another really old post, by the person who wrote the "Growing Up With Sky" post that I linked in a previous recommended reading)
(I know I need to do a "mental age" tag and maybe do some more in-depth posts about mental age etc. I have a lot to say about it.)
oh wait, edited to add: A Five-Year-Old's Explanation of Autism
AWWWWW
(This is the best day of the year because it's the day that everyone else thinks and talks like me.)
other recommended reading while I'm at it:
Just Stop It (really old Dave Hingsburger post about trying to get ID people to act "age-appropriate")
I am not responsible for your discomfort (another really old post, by the person who wrote the "Growing Up With Sky" post that I linked in a previous recommended reading)
(I know I need to do a "mental age" tag and maybe do some more in-depth posts about mental age etc. I have a lot to say about it.)
oh wait, edited to add: A Five-Year-Old's Explanation of Autism
AWWWWW
(This is the best day of the year because it's the day that everyone else thinks and talks like me.)
19 February, 2010
Passing As Ethics is a World
Or, the Only Useful Thing Glee Ever Did
Disability Blog Carnival #63--Relationships
(due tomorrow, you should write something!)
Autism is not all about being bad with people, even though that's what most people think (once you can talk). A lot of people are bad with people in different ways, but they only want to talk about us. How they can make us better. What they don't know is that being a person who was once bad with people is its own punishment. That is, it's a whole new way of being bad.
I suffer from a syndrome. It's called Passing As Ethics. I made it up, though, so I can call it whatever I want. Sometimes I call it Us vs. Them or Them vs. Me. None of these names do a good job explaining the whole thing, just parts of it. It consists of a collection of false beliefs. Or, exaggerations. Conclusions badly reached.
Fact: Autism Spectrum Disorder people look sort of weird to normal people, and some things are harder for them. To a Passing As Ethics sufferer, this means: the way ASD people do things is worse than the way other people do them--->ASD people should feel guilty if other people can tell there's something weird about them--->ASD people should feel guilty for stimming--->if a normal person isn't interested in something an ASD person says it's because the ASD person is monologuing--->if an ASD person isn't interested in something a normal person says it's because they have no empathy--->a friendship where one person talks most of the time is not a real friendship--->if a normal person doesn't like something an ASD person does, the ASD person should stop--->the opposite is definitely not true--->well, I think you get the idea.
All kinds of people can suffer from Passing As Ethics. A mother who brings her extremely sound-sensitive kid into a grocery store, then gets angry at him for crying, is a PAE sufferer. A teacher who tries to behavior-modify kids out of stimming or using big words, because it's "weird," is a PAE sufferer. And an ASD person who is unable to speak up when her classmates are saying things about ASD people that aren't true, because she doesn't think she can explain in less than four sentences, and she's interested in ASD rights, so if she talks a lot about something she's interested in, that would be monologuing, and that would be wrong--well, I prefer to say I have PAE, it doesn't have me. Who the fuck am I kidding, yeah it does. It has me really bad.
This post isn't about PAE in general, though. It is about how my disability affects my relationships. I think that talking about PAE in vague terms would be confusing, so I will just use specific examples instead.
Like most people who are writers, I like to talk about things I'm writing and things that have happened to me, especially if something is a good story. In a writing workshop, I met a boy named Noah who thought I was a very good writer, and I felt the same way about him. Noah and I haltingly came together out of mutual admiration, and began spending a lot of time together. We told each other about things we had written and interesting things that had happened to us. Although, I guess I talked more.
The semester came to an end and Noah didn't apply for another workshop. He said that he didn't feel ready to be in a workshop again. Early in the next semester, Noah decided that even though he wanted to be a writer, workshops made him feel self-conscious, and he was going to major in Psychology instead of Creative Writing. I bugged Noah about this, both because I wanted to be in more classes with him, and because I felt like it was what I was supposed to do. I always worry that I'm not as interested in other people as I should be, so I felt good about myself for being such a fan of Noah's writing. I made an effort to express this as much as possible; for example, I would introduce Noah to people by telling them that he was a good writer.
I started sleeping in Noah's room because my roommate and I were proving not to be compatible. Noah went to bed early and got up very early. When he got up, he would write for a while on his computer. When I asked to look at what he wrote, he said no. One night when Noah was asleep, I opened his computer and read his stories. A few days later I said, "Hey, Noah, would you be mad at me if I went on your computer and read your stories? Because I did and they were really good."
Noah felt very uncomfortable about what had happened. He told me that I couldn't stay in his room anymore, and for a while we didn't see each other very much. I was very upset of course, but I was also stunned. I hadn't imagined that Noah would be so upset that I had read his stories--and if you insist on reading this as a typical ASD lack of empathy, then I can't stop you. But the reason I was stunned was that I had a conviction that showing interest in another person was morally right. I had been worried about my friendship with Noah because I thought that I talked too much about my writing, my life, and my interests, and Noah mostly listened. I thought that I needed to make the friendship more balanced by learning more about Noah.
Well, I guess this does show a lack of empathy, but it's the PAE kind. The same lack of empathy that a mom shows when she takes her sound-sensitive child to the grocery store is what I showed to Noah. I expected Noah to react like my idea of a normal person, to react positively because I'd done something normal. This expectation was horrible because it showed no understanding of the person Noah actually was--a person who was self-conscious about his writing, and furthermore had actually said he didn't want me to read it.
This is one of the shittiest things I've ever done to another person, and is probably my best PAE story. However, lots of little PAE events occur when I interact with my roommate, Laura. I say things to her, and she doesn't answer me. When this happens, I think that Laura hasn't answered me because I was monologuing or saying something weird, and she thought it was boring or annoying. This makes me feel guilty and embarrassed. Then I feel annoyed at Laura for making me feel that way. I think that she's lording it over me because she's a normal person and I'm a freakish ASD person who doesn't know how to say the normal thing. Sometimes I just feel bad inside my head, but other times, if Laura expresses surprise about something I already told her about, I snap, "I already told you; if you didn't want to listen, that's your problem."
In my nonfiction workshop, they say you can't worry about making yourself look bad. Here goes: Laura is actually deaf in her left ear. I've lived with her for ten cumulative months in freshman and junior year, and I've known about her deafness since probably the first week. Yeah, that's right--I get mad at someone for not listening to me, even though if I actually thought about it, I would know it's because she can't hear me. I feel like there's some Normal Person vs. Freakish Disabled Person conflict going on, even though the lack of communication is actually caused by the normal person having a disability, and not even knowing that communication is being attempted.
I never thought of Laura as having a disability until I saw a person like her being insulted in an episode of Glee, a show that basically exists to insult disabled people. It turned my head around. The sheer irony and ridiculousness of me being embarrassed and angry about being disabled when Laura doesn't answer me because she's disabled is starting to make me realize how bad my PAE is, and how much I want it to stop. Well, I've been working hard at not noticing whether I'm normal or not, and Noah is helping out, too. "If I have something to tell you, I'll tell you" and "If I want you to leave, I'll tell you" are now staples he uses when talking to me. The other day I told him about ASD stuff, for hours. Apparently this is interesting. The whole time I was waiting for the other shoe to drop, but it never did.
Passing As Ethics doesn't just affect the sufferer. If you have PAE, all your friends have PAE too. But there is hope--with the right support, individuals with Passing As Ethics can improve and actually treat people like humans instead of Normal People to fear and resent.
I am trapped in my world of Passing As Ethics. But my friends are trying their hardest to pull me out.
Disability Blog Carnival #63--Relationships
(due tomorrow, you should write something!)
Autism is not all about being bad with people, even though that's what most people think (once you can talk). A lot of people are bad with people in different ways, but they only want to talk about us. How they can make us better. What they don't know is that being a person who was once bad with people is its own punishment. That is, it's a whole new way of being bad.
I suffer from a syndrome. It's called Passing As Ethics. I made it up, though, so I can call it whatever I want. Sometimes I call it Us vs. Them or Them vs. Me. None of these names do a good job explaining the whole thing, just parts of it. It consists of a collection of false beliefs. Or, exaggerations. Conclusions badly reached.
Fact: Autism Spectrum Disorder people look sort of weird to normal people, and some things are harder for them. To a Passing As Ethics sufferer, this means: the way ASD people do things is worse than the way other people do them--->ASD people should feel guilty if other people can tell there's something weird about them--->ASD people should feel guilty for stimming--->if a normal person isn't interested in something an ASD person says it's because the ASD person is monologuing--->if an ASD person isn't interested in something a normal person says it's because they have no empathy--->a friendship where one person talks most of the time is not a real friendship--->if a normal person doesn't like something an ASD person does, the ASD person should stop--->the opposite is definitely not true--->well, I think you get the idea.
All kinds of people can suffer from Passing As Ethics. A mother who brings her extremely sound-sensitive kid into a grocery store, then gets angry at him for crying, is a PAE sufferer. A teacher who tries to behavior-modify kids out of stimming or using big words, because it's "weird," is a PAE sufferer. And an ASD person who is unable to speak up when her classmates are saying things about ASD people that aren't true, because she doesn't think she can explain in less than four sentences, and she's interested in ASD rights, so if she talks a lot about something she's interested in, that would be monologuing, and that would be wrong--well, I prefer to say I have PAE, it doesn't have me. Who the fuck am I kidding, yeah it does. It has me really bad.
This post isn't about PAE in general, though. It is about how my disability affects my relationships. I think that talking about PAE in vague terms would be confusing, so I will just use specific examples instead.
Like most people who are writers, I like to talk about things I'm writing and things that have happened to me, especially if something is a good story. In a writing workshop, I met a boy named Noah who thought I was a very good writer, and I felt the same way about him. Noah and I haltingly came together out of mutual admiration, and began spending a lot of time together. We told each other about things we had written and interesting things that had happened to us. Although, I guess I talked more.
The semester came to an end and Noah didn't apply for another workshop. He said that he didn't feel ready to be in a workshop again. Early in the next semester, Noah decided that even though he wanted to be a writer, workshops made him feel self-conscious, and he was going to major in Psychology instead of Creative Writing. I bugged Noah about this, both because I wanted to be in more classes with him, and because I felt like it was what I was supposed to do. I always worry that I'm not as interested in other people as I should be, so I felt good about myself for being such a fan of Noah's writing. I made an effort to express this as much as possible; for example, I would introduce Noah to people by telling them that he was a good writer.
I started sleeping in Noah's room because my roommate and I were proving not to be compatible. Noah went to bed early and got up very early. When he got up, he would write for a while on his computer. When I asked to look at what he wrote, he said no. One night when Noah was asleep, I opened his computer and read his stories. A few days later I said, "Hey, Noah, would you be mad at me if I went on your computer and read your stories? Because I did and they were really good."
Noah felt very uncomfortable about what had happened. He told me that I couldn't stay in his room anymore, and for a while we didn't see each other very much. I was very upset of course, but I was also stunned. I hadn't imagined that Noah would be so upset that I had read his stories--and if you insist on reading this as a typical ASD lack of empathy, then I can't stop you. But the reason I was stunned was that I had a conviction that showing interest in another person was morally right. I had been worried about my friendship with Noah because I thought that I talked too much about my writing, my life, and my interests, and Noah mostly listened. I thought that I needed to make the friendship more balanced by learning more about Noah.
Well, I guess this does show a lack of empathy, but it's the PAE kind. The same lack of empathy that a mom shows when she takes her sound-sensitive child to the grocery store is what I showed to Noah. I expected Noah to react like my idea of a normal person, to react positively because I'd done something normal. This expectation was horrible because it showed no understanding of the person Noah actually was--a person who was self-conscious about his writing, and furthermore had actually said he didn't want me to read it.
This is one of the shittiest things I've ever done to another person, and is probably my best PAE story. However, lots of little PAE events occur when I interact with my roommate, Laura. I say things to her, and she doesn't answer me. When this happens, I think that Laura hasn't answered me because I was monologuing or saying something weird, and she thought it was boring or annoying. This makes me feel guilty and embarrassed. Then I feel annoyed at Laura for making me feel that way. I think that she's lording it over me because she's a normal person and I'm a freakish ASD person who doesn't know how to say the normal thing. Sometimes I just feel bad inside my head, but other times, if Laura expresses surprise about something I already told her about, I snap, "I already told you; if you didn't want to listen, that's your problem."
In my nonfiction workshop, they say you can't worry about making yourself look bad. Here goes: Laura is actually deaf in her left ear. I've lived with her for ten cumulative months in freshman and junior year, and I've known about her deafness since probably the first week. Yeah, that's right--I get mad at someone for not listening to me, even though if I actually thought about it, I would know it's because she can't hear me. I feel like there's some Normal Person vs. Freakish Disabled Person conflict going on, even though the lack of communication is actually caused by the normal person having a disability, and not even knowing that communication is being attempted.
I never thought of Laura as having a disability until I saw a person like her being insulted in an episode of Glee, a show that basically exists to insult disabled people. It turned my head around. The sheer irony and ridiculousness of me being embarrassed and angry about being disabled when Laura doesn't answer me because she's disabled is starting to make me realize how bad my PAE is, and how much I want it to stop. Well, I've been working hard at not noticing whether I'm normal or not, and Noah is helping out, too. "If I have something to tell you, I'll tell you" and "If I want you to leave, I'll tell you" are now staples he uses when talking to me. The other day I told him about ASD stuff, for hours. Apparently this is interesting. The whole time I was waiting for the other shoe to drop, but it never did.
Passing As Ethics doesn't just affect the sufferer. If you have PAE, all your friends have PAE too. But there is hope--with the right support, individuals with Passing As Ethics can improve and actually treat people like humans instead of Normal People to fear and resent.
I am trapped in my world of Passing As Ethics. But my friends are trying their hardest to pull me out.
27 January, 2010
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.
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.
11 December, 2009
A bit more on Glee
Seriously I think this is what Ryan Murphy knows about intellectually disabled people: they're inspirational or something! But they're not good at anything and they live in hospitals waiting for us to come and read to them! But we have to pretend that they're good at things to make them feel better, but then we'll yell at them for being bad at those things, because we don't want to discriminate!
I could write a million essays on how weird the portrayal of characters with Down Syndrome was. For example, the joke about Brittany cheating off Becky's math test. Obviously the joke is, Brittany's so ditzy she thinks people with Down Syndrome are good at math, or else, Brittany's so bad at math that a person with Down Syndrome is better at math than she is. I don't necessarily mind this, because people with Down Syndrome usually aren't good at math; I can imagine a show making fun of disabled people's impairments in a blunt, dark-humor kind of way, that I wouldn't find offensive.* But this particular joke is just so weaselly, you can even pretend that it isn't a joke about Becky's disability if you want. In a previous episode Terri said she didn't want a baby who was a "Mongoloid," and obviously this was supposed to be shocking-funny, but I bet that no character would be shown using that word to describe Becky. And I think that's because the writers of the show aren't willing to face the fact that they are insulting actual people when they use words like Mongoloid.
They want to be seen as shocking and offensive in a daring and funny way but they're not willing to own it. And that's what really annoys the hell out of me about that episode, and the show in general. And also the show's fans who claim that offensive elements of the show are "satire." If it was satire, it would be funny. Mercedes's constant complaints about the music are not supposed to be quotable one-liners, nor are they supposed to be a parody of stereotypical black characters. She's just a badly written character whose creators rely heavily on stereotypes when they write her dialogue.
*I'm not especially fond of the Retarded Policeman videos on YouTube, but at least they're not weaselly; most of the offensive material is performed by an actor with Down Syndrome. The videos make fun of intellectually disabled people, but in the end I think it must positively affect viewers to see an intellectually disabled actor who is talented and funny. When Glee makes fun of deaf people they're not as brutal as the Retarded Policeman videos are about intellectually disabled people--but they imply that deaf people exploit their deafness for personal gain and can only be successful because of others' pity. The makers of the Retarded Policeman videos actually know that intellectually disabled people can be talented, which makes them automatically better than the creators of Glee.
eta: okay this one is kind of good
but I still think How's Your News? is a million times better (actually, it's a million times better than just about anything):
this is my favorite:
I could write a million essays on how weird the portrayal of characters with Down Syndrome was. For example, the joke about Brittany cheating off Becky's math test. Obviously the joke is, Brittany's so ditzy she thinks people with Down Syndrome are good at math, or else, Brittany's so bad at math that a person with Down Syndrome is better at math than she is. I don't necessarily mind this, because people with Down Syndrome usually aren't good at math; I can imagine a show making fun of disabled people's impairments in a blunt, dark-humor kind of way, that I wouldn't find offensive.* But this particular joke is just so weaselly, you can even pretend that it isn't a joke about Becky's disability if you want. In a previous episode Terri said she didn't want a baby who was a "Mongoloid," and obviously this was supposed to be shocking-funny, but I bet that no character would be shown using that word to describe Becky. And I think that's because the writers of the show aren't willing to face the fact that they are insulting actual people when they use words like Mongoloid.
They want to be seen as shocking and offensive in a daring and funny way but they're not willing to own it. And that's what really annoys the hell out of me about that episode, and the show in general. And also the show's fans who claim that offensive elements of the show are "satire." If it was satire, it would be funny. Mercedes's constant complaints about the music are not supposed to be quotable one-liners, nor are they supposed to be a parody of stereotypical black characters. She's just a badly written character whose creators rely heavily on stereotypes when they write her dialogue.
*I'm not especially fond of the Retarded Policeman videos on YouTube, but at least they're not weaselly; most of the offensive material is performed by an actor with Down Syndrome. The videos make fun of intellectually disabled people, but in the end I think it must positively affect viewers to see an intellectually disabled actor who is talented and funny. When Glee makes fun of deaf people they're not as brutal as the Retarded Policeman videos are about intellectually disabled people--but they imply that deaf people exploit their deafness for personal gain and can only be successful because of others' pity. The makers of the Retarded Policeman videos actually know that intellectually disabled people can be talented, which makes them automatically better than the creators of Glee.
eta: okay this one is kind of good
but I still think How's Your News? is a million times better (actually, it's a million times better than just about anything):
this is my favorite:
28 November, 2009
Hairography
wow I'm watching Glee and I can't even believe what a douche Mercedes is (oh, and everyone else, apparently). THANKS FOR HELPING OUT THOSE DEAF PEOPLE WITH YOUR AWESOME SINGING!!
I enjoy Kurt's scheming, but that's about it. Why would someone ever think it's a good idea to make a TV show like this? Even the good parts are just a bad version of Spring Awakening.
(By the way my friend is deaf in one ear and having a conversation with her is exactly like having a conversation with a person who isn't deaf, unless her hearing ear is facing away from you. Which would not be the case when you're sitting face to face with someone. Although, isn't that guy from some Joss Whedon thing or other? It's nice to see him.)
I enjoy Kurt's scheming, but that's about it. Why would someone ever think it's a good idea to make a TV show like this? Even the good parts are just a bad version of Spring Awakening.
(By the way my friend is deaf in one ear and having a conversation with her is exactly like having a conversation with a person who isn't deaf, unless her hearing ear is facing away from you. Which would not be the case when you're sitting face to face with someone. Although, isn't that guy from some Joss Whedon thing or other? It's nice to see him.)
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