DISCUSS: the phrase “person with disabilities” instead of “person with a disability.” sometimes I see this used, like, “a person with intellectual disabilities”—wait, really? how many intellectual disabilities can one person have?
I don’t know if this is just a style thing that doesn’t actually make sense, saying disabilities plural when the person doesn’t actually have multiple disabilities. but I am kind of into it because actually one person can have a lot of intellectual disabilities, or a lot of fibros or depressions or whatever. I would almost prefer to say I have disabilities instead of saying I have a disability because it’s not like it only does one thing.
what do you think?
Showing posts with label language. Show all posts
Showing posts with label language. Show all posts
05 October, 2011
24 June, 2011
Fallacy Week: Form Over Function Fallacies
Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.
Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.
1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.
Rebuttal:
I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will. Anyway, it's the end of Fallacy Week! Go forth and argue.
Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.
1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.
Rebuttal:
I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will. Anyway, it's the end of Fallacy Week! Go forth and argue.
20 June, 2011
Fallacy Week: The Harder Fallacy & The Uncomfortable Fallacy
Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.
A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”
Fallacies of relevance can be very difficult to respond to for several reasons.
1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.
I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?
In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.
The Harder Fallacy
JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.
Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”
(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad’” rule consistently, and only apply it to stigmatized groups.)
The Uncomfortable Fallacy
MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.
Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.
(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)
A lot of the time, when you are having a conversation about disability and/or ableism, the person you are arguing with will make a fallacious argument. Most of the fallacies I’m describing in this post are fallacies of relevance. Wikipedia describes fallacies of relevance as “presenting an argument that may in itself be valid, but does not address the issue in question.”
Fallacies of relevance can be very difficult to respond to for several reasons.
1. They involve an abrupt change of subject, which can confuse and distract you, causing you to lose your train of thought. Depending on your disability, this can have the effect of making you have to quit the conversation altogether.
2. Often the change of subject isn’t obvious–it may even be unintentional on the part of the person who’s using the fallacy, if they are responding emotionally rather than logically. You may end up feeling that something isn’t right about what they said, but unable to identify exactly what it is.
3. A lot of these fallacies involve stating something irrelevant that is true. You may become confused and think you are wrong because the other person said something true.
4. A lot of these fallacies involve stating something irrelevant that is related to violence, the speaker’s personal feelings, or other emotionally powerful themes. You may become uncomfortable and think that it would be wrong to disagree, because you might be implying that you don’t care about violence, people’s feelings, etc.
I have experienced 1, 2, 3, and 4 in real-life and online conversations, and as a result I’ve become super interested in sitting around by myself and deconstructing what happened–why did I feel like I was wrong even as I sensed that the other person wasn’t being fair?
In these examples, John is a disabled self-advocate, while Mary is using various fallacies to oppose him. From example to example John and Mary are different people and have different relationships with each other. I tried to give John a few different disabilities, since most of these fallacies are fairly universal. But I felt awkward doing this, because I was mostly writing from my own experience; I hope I haven’t stuck in disabilities that don’t fit the example.
The Harder Fallacy
JOHN: I didn’t like the story we read in class. It was told from everyone’s point of view but the son with CP, and whenever it talked about the disabled son, it would just list everything he couldn’t do. We never learned about his personality or how he felt about anything. I thought it was an offensive portrayal of a disabled character.
MARY: Come on! Are you saying it’s not harder to have a kid with cerebral palsy? That’s a ridiculous thing to say.
Rebuttal:
John wasn’t talking about whether it’s harder to have a disabled kid than a non-disabled kid. He just wanted the disabled kid to have a point of view and a personality, like the other characters. If someone wanted, they could easily write a story that portrayed a family having a very hard time coping with their son’s disability, while still portraying the son as a well-rounded character and not a plot device.
Mary was responding to a totally different statement, which she made up in her head and is pretending (or actually thinks) is what John was saying. The way the harder fallacy works is that when someone makes any comment about disability being portrayed offensively or inaccurately, you respond to the following imaginary statement: “It isn’t harder to be disabled and it isn’t harder to live or work with a disabled person.”
(Fun fact: some people use a form of the harder fallacy to defend statements like, “This weather is retarded.” Their argument is that having an intellectual disability is harder than not having one, so therefore intellectual disabilities are bad, and words relating to them can be used to mean “bad.” I guess this is a legit argument, except that most people who make the argument don’t apply their “harder life=synonym for ‘bad’” rule consistently, and only apply it to stigmatized groups.)
The Uncomfortable Fallacy
MARY: Wow John, it’s so nice of you that you do that program where you go bowling with people who have special needs. I really admire you because I’m not the kind of person who can talk to special needs people.
JOHN: Well, they’re just people. I’m sure you could come bowling with us and it would be fine.
MARY: No I can’t. When I’m around special needs people, I feel really uncomfortable and don’t know what to say.
Rebuttal:
This is a less classic fallacy, and not quite an argument; but I think it’s worth exposing. Mary is confusing a feeling with a fact. She interprets her discomfort with “special needs people” to mean that they are a homogeneous group which one needs certain skills to interact with–skills which, she concludes, she must not have.
If Mary always feels uncomfortable around an entire minority group, it’s probably because she hasn’t been around people from that group very much, or has heard a lot of bad things about them. There is no way an entire group of people could be so similar that one person possesses the ability to either get along, or not get along, with all of them. The uncomfortable fallacy is when you think that being uncomfortable around another person necessarily indicates something about the person.
(Fun fact: You may be wondering why John considers this an argument, when Mary just told him he has admirable skills and is nice. Remember, John is disabled. From Mary’s attitude towards disability, we can guess that she probably doesn’t know John is disabled. But John knows that John is disabled, so he’s probably thinking, “I wonder how Mary would feel about me if she knew I was disabled. Or if she does know, why is she talking to me and why did she tell me she’s uncomfortable around other disabled people? Does she think I’m not really disabled?” And so on. Although Mary meant to compliment John, she simultaneously insulted him which makes him feel, well, uncomfortable.)
30 April, 2011
about individuals
I started to write something about this two years ago but I didn't really know where I was going with it, and still don't, but (like lots of people) I find it really gross when professionals and other "allies" think that using person-first language is more important than actually not being ableist. Especially when they boss people who are actually less ableist than they are, or are actually disabled, because the person didn't use PFL.
However, something that I think is even weirder than the prescriptivism on PFL is the word "individuals." You basically only see the word individuals used about people who have committed a crime or are disabled, and a lot of the kind of people who overprioritize person-first language are the kind of people who use the word individuals. It's primarily used by professionals when they are talking about disabled people, either in specific or in general. Someone will talk about the "individual with autism" they are working with, or also you see this in a more broad way used to describe a big group of people--like a service provider might have on their website, "we serve individuals with profound disabilities."
I can't exactly put my finger on what bothers me about the word individual, but I think it's really just the fact that it only seems to be used about disabled people. I assume the decision to use a different word instead of "people" is a reaction to something, but what is it a reaction to? It sounds so alienating and medicalized--what's wrong with saying "we serve people with profound disabilities" or "I've been working with this man with autism?"
Can someone explain this to me?
However, something that I think is even weirder than the prescriptivism on PFL is the word "individuals." You basically only see the word individuals used about people who have committed a crime or are disabled, and a lot of the kind of people who overprioritize person-first language are the kind of people who use the word individuals. It's primarily used by professionals when they are talking about disabled people, either in specific or in general. Someone will talk about the "individual with autism" they are working with, or also you see this in a more broad way used to describe a big group of people--like a service provider might have on their website, "we serve individuals with profound disabilities."
I can't exactly put my finger on what bothers me about the word individual, but I think it's really just the fact that it only seems to be used about disabled people. I assume the decision to use a different word instead of "people" is a reaction to something, but what is it a reaction to? It sounds so alienating and medicalized--what's wrong with saying "we serve people with profound disabilities" or "I've been working with this man with autism?"
Can someone explain this to me?
04 March, 2011
Asher made this post about microaggressions, it was really good. I want to make a post like it someday when I can remember to write things down.
One thing I was thinking about was--well, obviously I basically can't go anywhere without hearing or reading the r-word, and "psychotic" is really thrown around to mean evil as well. But the words Asperger's and autistic have also reached, though not the same level, a level of use as an insult. For example a few months ago I read this book where the author kept using the word "autistically" to describe the behavior of an unlikable character. And you can't really go anywhere without running into the following awesome usage (this is from a blog post about the movie trope of Manic Pixie Dream Girls):
More so, sometimes they are outright uninterested in making conversation. I mean, he’s obviously busy FILLING OUT SOME FORMS. But much like Asberger’s patients, some Quirky Girls fail to understand social cues, and force themselves into association with the movie’s hero without any delicacy or grace.
I didn't comment on the post, even though it was at Feministing which I guess should try not to be total assholes re: minority groups. I just felt embarrassed. If you can't even spell a disability, then should you really be making reference to it? And what's with the word "patients?" Do you think all people with disabilities just spend their entire lives being studied/treated by doctors? (I guess I could give her the benefit of the doubt and imagine she means "the patients of Hans Asperger," but if she was that educated she'd probably be able to spell it.)
Yeah so I do feel stupid every time I see this stuff--stupid for being affected. It's so little and it's just a pop culture blog or whatever.
Did I post about this time I was cashiering and this girl decided she didn't like the reusable container program and proclaimed in the most whingey voice, "That's just...RETARDED!" I guess I must have looked pretty shaken because she said, "Oh, not you," and hurried off. I wanted to say, "Oh, fuck yes, me. Good observation skills."
eta: I just decided to go comment on the Feministing post; I made this comment saying I have ASD and I have problems with her "Asberger's" reference. And the second I sent it I was like, "shit! People are going to read this and think I don't understand jokes and I take everything too literally because I have ASD. I should have just said I was disabled, or I should have said I have a friend who has ASD--now no one will listen to me. If anyone answers, I'll have to come up with a response that makes me come off like I'm really sensitive to other people's feelings and I have a good sense of humor."
I just thought that was funny.
One thing I was thinking about was--well, obviously I basically can't go anywhere without hearing or reading the r-word, and "psychotic" is really thrown around to mean evil as well. But the words Asperger's and autistic have also reached, though not the same level, a level of use as an insult. For example a few months ago I read this book where the author kept using the word "autistically" to describe the behavior of an unlikable character. And you can't really go anywhere without running into the following awesome usage (this is from a blog post about the movie trope of Manic Pixie Dream Girls):
More so, sometimes they are outright uninterested in making conversation. I mean, he’s obviously busy FILLING OUT SOME FORMS. But much like Asberger’s patients, some Quirky Girls fail to understand social cues, and force themselves into association with the movie’s hero without any delicacy or grace.
I didn't comment on the post, even though it was at Feministing which I guess should try not to be total assholes re: minority groups. I just felt embarrassed. If you can't even spell a disability, then should you really be making reference to it? And what's with the word "patients?" Do you think all people with disabilities just spend their entire lives being studied/treated by doctors? (I guess I could give her the benefit of the doubt and imagine she means "the patients of Hans Asperger," but if she was that educated she'd probably be able to spell it.)
Yeah so I do feel stupid every time I see this stuff--stupid for being affected. It's so little and it's just a pop culture blog or whatever.
Did I post about this time I was cashiering and this girl decided she didn't like the reusable container program and proclaimed in the most whingey voice, "That's just...RETARDED!" I guess I must have looked pretty shaken because she said, "Oh, not you," and hurried off. I wanted to say, "Oh, fuck yes, me. Good observation skills."
eta: I just decided to go comment on the Feministing post; I made this comment saying I have ASD and I have problems with her "Asberger's" reference. And the second I sent it I was like, "shit! People are going to read this and think I don't understand jokes and I take everything too literally because I have ASD. I should have just said I was disabled, or I should have said I have a friend who has ASD--now no one will listen to me. If anyone answers, I'll have to come up with a response that makes me come off like I'm really sensitive to other people's feelings and I have a good sense of humor."
I just thought that was funny.
26 February, 2011
my crush on NOAH's person-first language page
I'm writing a very long post about person-first language and the fact that, although I prefer it, I think it's pretty annoying when people (usually non-disabled people) go around demanding that other people use it as though it's some kind of immediate key to respecting people with disabilities. In my opinion, all the arguments people use to try to prove that person-first language is inherently more accurate and respectful just end up making them sound like assholes. If I am really a "person first and a disability second," what does that mean? Does that mean people are supposed to be looking at a version of me where all the disabled parts of me have been scooped out and are floating along somewhere behind me? How are people supposed to relate to me when I have huge chunks missing? What kind of pressure does this put on me to avoid showing the parts of me that somehow aren't supposed to be part of my "personhood," and are supposed to be things I can detach?
I totally love person-first language and use it all the time while NOT feeling that it in any way should be taken literally when interacting with disabled people. This is why I have such immense love for the What Do You Call Me? page on the National Organization for Albinism and Hypopigmentation website. While it has a few instances of "person first and albinism second," the bulk of the page is devoted to talking about the pop culture image of an "albino," the way the word may be used to bully people, and, most importantly, what actual people with albinism feel about the word. Not surprisingly, opinions are mixed--some people see it as neutral, some people "reclaim" it, and some people feel uncomfortable or hurt when it is applied to them. After some discussion, the page arrives at this sort-of-conclusion:
To most in the albinism community, the term “person with albinism” will always be a kinder, gentler, less shocking term. Regardless of the context, the word “albino” can sometimes be an ugly, jolting word to many, especially when heard unexpectedly.
So, basically, it sounds better and doesn't call up a bunch of stereotypes. THANK YOU NOAH. It isn't necessary to imply that disability is some gross thing that has to be ignored, just to make the point that you shouldn't run around calling people a word that has a lot of stigma because it might make them feel bad.
For me, person-first language is about how things sound and feelings and implications; it's not right in any objective way, because that would be ridiculous.
I totally love person-first language and use it all the time while NOT feeling that it in any way should be taken literally when interacting with disabled people. This is why I have such immense love for the What Do You Call Me? page on the National Organization for Albinism and Hypopigmentation website. While it has a few instances of "person first and albinism second," the bulk of the page is devoted to talking about the pop culture image of an "albino," the way the word may be used to bully people, and, most importantly, what actual people with albinism feel about the word. Not surprisingly, opinions are mixed--some people see it as neutral, some people "reclaim" it, and some people feel uncomfortable or hurt when it is applied to them. After some discussion, the page arrives at this sort-of-conclusion:
To most in the albinism community, the term “person with albinism” will always be a kinder, gentler, less shocking term. Regardless of the context, the word “albino” can sometimes be an ugly, jolting word to many, especially when heard unexpectedly.
So, basically, it sounds better and doesn't call up a bunch of stereotypes. THANK YOU NOAH. It isn't necessary to imply that disability is some gross thing that has to be ignored, just to make the point that you shouldn't run around calling people a word that has a lot of stigma because it might make them feel bad.
For me, person-first language is about how things sound and feelings and implications; it's not right in any objective way, because that would be ridiculous.
23 January, 2011
I'm getting in a dumb fight on obietalk (my college's anonymous forum). Seriously cis people flipping out about the word cis probably makes me more mad than anything in the world. It just makes me really mad that whoever created the word went out of their way to find this completely neutral term, and people still claim it's an insult.
I really don't like the word neurotypical, I think because people kind of use it without walking the walk (my definition of "walking the walk" would be "not othering people with ASD or setting up people without ASD as an example for us to aspire to"). Just as a random example, ADCN found this, written by a non-ASD woman who has a very passing as ethics slant but refers to herself as neurotypical. But I do get annoyed when I see people react to the word neurotypical in kind of a similar way and automatically categorize it as an insult. I've even occasionally seen straight people who can't handle the word straight because they don't "feel straight."
This just kind of makes me want to barf. It sort of reminds me of Asher's post about tone and how there's always someone who will say that he has an unreasonable or aggressive tone. Someone on obietalk tried to explain to me why they thought "cis" was offensive by saying "what if straight people decided that all gay people should be called faggots?" It just really freaks me out how something totally neutral can be transformed into a slur when it reaches someone who is incredibly offended by the idea that everyone who isn't like them should just be accepted as another kind of person, instead of being an Oh My Gosh You Guys Look At That Weird Thing.
I really don't like the word neurotypical, I think because people kind of use it without walking the walk (my definition of "walking the walk" would be "not othering people with ASD or setting up people without ASD as an example for us to aspire to"). Just as a random example, ADCN found this, written by a non-ASD woman who has a very passing as ethics slant but refers to herself as neurotypical. But I do get annoyed when I see people react to the word neurotypical in kind of a similar way and automatically categorize it as an insult. I've even occasionally seen straight people who can't handle the word straight because they don't "feel straight."
This just kind of makes me want to barf. It sort of reminds me of Asher's post about tone and how there's always someone who will say that he has an unreasonable or aggressive tone. Someone on obietalk tried to explain to me why they thought "cis" was offensive by saying "what if straight people decided that all gay people should be called faggots?" It just really freaks me out how something totally neutral can be transformed into a slur when it reaches someone who is incredibly offended by the idea that everyone who isn't like them should just be accepted as another kind of person, instead of being an Oh My Gosh You Guys Look At That Weird Thing.
12 January, 2011
from the inside, #2
The reason I'm titling these posts this way is that they both are anecdotes that I think are really funny--and in this case, really cute--but I feel like they'd make absolutely zero sense to people who don't have a similar identity and experience to mine, re: disability. So to some people they may come off as being really strange and out of context, but I'm hoping someone from my kind of place will relate to them instinctively.
In terms of socializing, I used to always have a strong feeling that I liked my friends much more than they liked me, so that showing that I liked them was showing weakness and showing that I wasn't normal. I was always really afraid of stalking someone or being an obsessive friend so I thought of myself as having to play this game where I'd be kind of unkind to people or wait to call them until they called me first. Now that I can think about these things more clearly, I think that being nice to people and reaching out to them usually makes them like you; it's not more complicated than that with the people I know. But I still end up feeling some of these urges to withdraw from people because it seems safer and more normal and more dignified. I used to have some food issues and making someone feel like I don't like them, or not calling them, feels basically the same as not eating. I am a winner.
Anyway, the upshot of this post is just that my best Autistic friend and I always use the word "supercrip" to refer to the person who "wins" in any interaction--i.e. the person who hangs up first, is called rather than calling, or displays less emotional connection to what's going on. I just think this is a cool usage because it shows how when you have problems with your disability identity, you can end up relating disability to all your problems and seeing really strange behaviors and accomplishments as "not being disabled anymore," i.e. winning, i.e. being a supercrip.
In terms of socializing, I used to always have a strong feeling that I liked my friends much more than they liked me, so that showing that I liked them was showing weakness and showing that I wasn't normal. I was always really afraid of stalking someone or being an obsessive friend so I thought of myself as having to play this game where I'd be kind of unkind to people or wait to call them until they called me first. Now that I can think about these things more clearly, I think that being nice to people and reaching out to them usually makes them like you; it's not more complicated than that with the people I know. But I still end up feeling some of these urges to withdraw from people because it seems safer and more normal and more dignified. I used to have some food issues and making someone feel like I don't like them, or not calling them, feels basically the same as not eating. I am a winner.
Anyway, the upshot of this post is just that my best Autistic friend and I always use the word "supercrip" to refer to the person who "wins" in any interaction--i.e. the person who hangs up first, is called rather than calling, or displays less emotional connection to what's going on. I just think this is a cool usage because it shows how when you have problems with your disability identity, you can end up relating disability to all your problems and seeing really strange behaviors and accomplishments as "not being disabled anymore," i.e. winning, i.e. being a supercrip.
26 September, 2010
some stuff on the horizon (like you're totally all excited about this, maybe not huh)
gay kids are trying to be productive academically, sometimes that doesn't happen but it's presently happening a little. so I don't want to write too much.
some thoughts though:
1. we can't all be Renaissance men
("look, stop freaking out about how disabled so and so is, he seems to be supporting himself" "but he can't tie his shoes and he could never go to a frat party!" "that's okay, he can wear slippers" "but some job environments wouldn't consider it appropriate to wear slippers!!" "but so and so's current boss and coworkers are okay with it" "WHY ARE YOU TRYING TO AVOID TALKING ABOUT HOW DISABLED SO AND SO IS, HE'S JUST SOOO DISABLED AAAAARRGHH I CAN'T EVEN")
2. does disorganized speech mean disorganized thought--too lazy to find what I'm talking about, but I was reading comments on a blog post by someone who was having trouble getting her kid diagnosed with ASD, and the professional she went to kept being like "no, she seems like she has some kind of psychosis because of the way she talks." some people like Amanda Baggs and Anne Corwin were saying in the comments that they speak in disorganized ways but that it just means language and thought are not very connected for them, their actual thoughts are not disorganized, it's just hard to turn them into words.
however, for me, language is me, there's nothing without it. Augusten Burrows's annoying brother said that he had to create his entire personality himself, and I feel the same. ADCN said that when I talk it sounds like I'm just thinking out loud, and that is the natural/easy way for me to talk, the way I was talking to him when he said that.
I am a poor speaker because I'm a poor thinker. I'd like to get a good rediagnosis/evaluation before I graduate from college, because it seems sensible to have it. but I'm actually worried that at this point I'm too careful about speaking coherently, and my speech won't be a complete window into my thought process the way it was 10-15 years ago.
3. "social skills don't exist," a super epic and great post which I have already written a lot of. this isn't the same as saying social impairment doesn't exist--social impairment can be framed in many ways and it is socially constructed of course, but it is REAL. but I just think that social skills aren't even real. it's a completely useless/empty concept.
first, what are "social skills"? making people like you? making friends? being able to manipulate people? making people not bully you? coming off the way you want to come off? those can't ALL BE THE SAME SKILL. what if you come off as intelligent/authoritative because you're tall? is being tall a social skill for that person? is being the same race as other people a social skill because it makes people more comfortable around you?
second, there is more than one person in the world. not everyone is taken in by the same things. and also, I guess I'm an idealist and tend to have a pretty gooey idea of connection and love. I believe there's potential for connection between various pairs and combinations of people--but not everyone gets the opportunity to connect. that doesn't mean anything as simple as saying that someone "lacks social skills." what a hateful thing to say, everyone has social skills, they're just not all the same things.
I also really love Stanley Greenspan/floortime, which is a way of actually consciously modifying your behavior to try to connect with people who have severe disabilities (for example, trying to speak in a way that isn't rough on their sensory issues, or trying to become involved in their stimming). If anything is an actual SKILL, this stuff is, and I think it's awesome--but it's not something that most people are naturally good at.
some thoughts though:
1. we can't all be Renaissance men
("look, stop freaking out about how disabled so and so is, he seems to be supporting himself" "but he can't tie his shoes and he could never go to a frat party!" "that's okay, he can wear slippers" "but some job environments wouldn't consider it appropriate to wear slippers!!" "but so and so's current boss and coworkers are okay with it" "WHY ARE YOU TRYING TO AVOID TALKING ABOUT HOW DISABLED SO AND SO IS, HE'S JUST SOOO DISABLED AAAAARRGHH I CAN'T EVEN")
2. does disorganized speech mean disorganized thought--too lazy to find what I'm talking about, but I was reading comments on a blog post by someone who was having trouble getting her kid diagnosed with ASD, and the professional she went to kept being like "no, she seems like she has some kind of psychosis because of the way she talks." some people like Amanda Baggs and Anne Corwin were saying in the comments that they speak in disorganized ways but that it just means language and thought are not very connected for them, their actual thoughts are not disorganized, it's just hard to turn them into words.
however, for me, language is me, there's nothing without it. Augusten Burrows's annoying brother said that he had to create his entire personality himself, and I feel the same. ADCN said that when I talk it sounds like I'm just thinking out loud, and that is the natural/easy way for me to talk, the way I was talking to him when he said that.
I am a poor speaker because I'm a poor thinker. I'd like to get a good rediagnosis/evaluation before I graduate from college, because it seems sensible to have it. but I'm actually worried that at this point I'm too careful about speaking coherently, and my speech won't be a complete window into my thought process the way it was 10-15 years ago.
3. "social skills don't exist," a super epic and great post which I have already written a lot of. this isn't the same as saying social impairment doesn't exist--social impairment can be framed in many ways and it is socially constructed of course, but it is REAL. but I just think that social skills aren't even real. it's a completely useless/empty concept.
first, what are "social skills"? making people like you? making friends? being able to manipulate people? making people not bully you? coming off the way you want to come off? those can't ALL BE THE SAME SKILL. what if you come off as intelligent/authoritative because you're tall? is being tall a social skill for that person? is being the same race as other people a social skill because it makes people more comfortable around you?
second, there is more than one person in the world. not everyone is taken in by the same things. and also, I guess I'm an idealist and tend to have a pretty gooey idea of connection and love. I believe there's potential for connection between various pairs and combinations of people--but not everyone gets the opportunity to connect. that doesn't mean anything as simple as saying that someone "lacks social skills." what a hateful thing to say, everyone has social skills, they're just not all the same things.
I also really love Stanley Greenspan/floortime, which is a way of actually consciously modifying your behavior to try to connect with people who have severe disabilities (for example, trying to speak in a way that isn't rough on their sensory issues, or trying to become involved in their stimming). If anything is an actual SKILL, this stuff is, and I think it's awesome--but it's not something that most people are naturally good at.
16 September, 2010
I really like this Retard Theory post but I don't think that's an acceptable word for the poster to be using. Maybe more on this later. But I know that some trans women really don't like for transmasculine and genderqueer people to try to "reclaim" the word tranny--there's a web page in fact trying to collect evidence that the slur is mainly used against trans women and therefore doesn't belong to other trans/gender-variant people. I think this is important.
I like the word queer a lot and sometimes use it about myself. But when I was growing up, no one ever used that word as a slur, so it's funny--I feel like nowadays people who call themselves queer are not really reclaiming it, we're just using it because it's a cool word or it feels less constricting than another description. On the other hand, I fucking hate the word dyke, and I was really angry when someone I knew who had never been openly lesbian would throw the word around and use it about me. She said, "Well, I'm a dyke so I can use it." But I mean...I've actually been called that, so it's actually painful for me to hear it, and I don't see how someone can "reclaim" it when it was never used against them in the first place.
The SpeEdChange guy is implying in the comments of his "Retard Theory" post that he was labeled MR at some point and that's why he feels he can use it? Eh, I don't know. I just haven't ever heard of a person with an intellectual disability identifying that way, and I'm leery of absolutely anyone in the world who doesn't 100% for sure have that exact disability using it...I know this all seems very nitpicky, but I just am always against the idea of people saying things like "we're all the same, we all go through the same things." No, we don't.
I do think his intentions are very admirable though, and I certainly don't feel included in the terms crip or gimp (I may not be supposed to). I like the idea of saying Failure Theory, but YMMV.
I like the word queer a lot and sometimes use it about myself. But when I was growing up, no one ever used that word as a slur, so it's funny--I feel like nowadays people who call themselves queer are not really reclaiming it, we're just using it because it's a cool word or it feels less constricting than another description. On the other hand, I fucking hate the word dyke, and I was really angry when someone I knew who had never been openly lesbian would throw the word around and use it about me. She said, "Well, I'm a dyke so I can use it." But I mean...I've actually been called that, so it's actually painful for me to hear it, and I don't see how someone can "reclaim" it when it was never used against them in the first place.
The SpeEdChange guy is implying in the comments of his "Retard Theory" post that he was labeled MR at some point and that's why he feels he can use it? Eh, I don't know. I just haven't ever heard of a person with an intellectual disability identifying that way, and I'm leery of absolutely anyone in the world who doesn't 100% for sure have that exact disability using it...I know this all seems very nitpicky, but I just am always against the idea of people saying things like "we're all the same, we all go through the same things." No, we don't.
I do think his intentions are very admirable though, and I certainly don't feel included in the terms crip or gimp (I may not be supposed to). I like the idea of saying Failure Theory, but YMMV.
02 September, 2010
I was just wondering, does anyone think that caring about language is sort of stupid? It's a genuine question--I mean, I write really long posts sort of dissecting different phrasings and totally obsessing over it, but is this just a distraction from what's actually important?
Like, I tend to like person-first language, but I feel like if you look at it for more than a second it becomes really offensive. At the place where I worked this summer we were always being told, "They are a person first and a disability or diagnosis second," but I don't know what that means. If you have a developmental disability then it affects your personality and your life experience a lot. Lots of people at camp did things that few if any non-disabled adults would do, and sometimes it was these things that made a person awesome. Saying "they are a person first" and shunting the disability to the side seemed like a way of saying that a large part of who someone was didn't actually matter.
However, just as I think it was silly to constantly say "They are a person first," I also think it's kind of silly for me to make a big post about the problematic nature of that phrase, because I don't think the other staff I worked with actually lived its implications. So it didn't really affect anyone.
Last summer I really enjoyed the YouTube videos of icecoldbath, especially a series where she talked about the implications of using certain words about trans people. She made a video explaining why you should say "trans woman" and not "transwoman," since trans is just an adjective and combining it with woman implies that a transwoman is a whole other kind of woman, instead of just a woman who is trans. Before watching this video I guess I wrote "transwoman" and "transguy" without spaces, and now I use spaces, but now that I think about it I don't know if this makes me a better ally in any real way.
I mean, obviously there is a point where language does matter, which I'd place around "cerebral palsy sufferer" and "retard" and using the wrong pronouns, but I think that at some point it may stop. I mean, I love dissecting it but I don't know if it's useful.
Like, I tend to like person-first language, but I feel like if you look at it for more than a second it becomes really offensive. At the place where I worked this summer we were always being told, "They are a person first and a disability or diagnosis second," but I don't know what that means. If you have a developmental disability then it affects your personality and your life experience a lot. Lots of people at camp did things that few if any non-disabled adults would do, and sometimes it was these things that made a person awesome. Saying "they are a person first" and shunting the disability to the side seemed like a way of saying that a large part of who someone was didn't actually matter.
However, just as I think it was silly to constantly say "They are a person first," I also think it's kind of silly for me to make a big post about the problematic nature of that phrase, because I don't think the other staff I worked with actually lived its implications. So it didn't really affect anyone.
Last summer I really enjoyed the YouTube videos of icecoldbath, especially a series where she talked about the implications of using certain words about trans people. She made a video explaining why you should say "trans woman" and not "transwoman," since trans is just an adjective and combining it with woman implies that a transwoman is a whole other kind of woman, instead of just a woman who is trans. Before watching this video I guess I wrote "transwoman" and "transguy" without spaces, and now I use spaces, but now that I think about it I don't know if this makes me a better ally in any real way.
I mean, obviously there is a point where language does matter, which I'd place around "cerebral palsy sufferer" and "retard" and using the wrong pronouns, but I think that at some point it may stop. I mean, I love dissecting it but I don't know if it's useful.
31 July, 2010
Some screwing around about person-first language (written June 18 to July 30)
I know these posts are probably boring to everyone but me, especially because I never come to any real conclusion. I just like thinking about language more than I like doing almost anything else. In practice, I generally use person-first language, but that's for various reasons not worth talking about (especially because I talk about those reasons a lot anyway). However, I was thinking a lot and I feel like, at least when I look at it in theory, person-first language is kind of painful for someone like me.
Just kidding, I am going to talk about what I do in practice. Being called "autistic" or calling other people "autistic" makes me uncomfortable and so I don't do it, but that's very specific stuff about the word autistic and how it feeds into cultural connotations about ASD that make me incredibly upset. However, although I guess I don't have much occasion to identify myself as just disabled (and when I do it's to pretentious social justice people, so I throw the term PWD around because they like acronyms) there is this really nice place in my head that goes "I'm a disabled person, I'm a disabled person" and it's seriously just one of the nicest-feeling phrases in the world. I like the word disabled, it looks soft, and it fits me neatly, and I enjoy the part of me that just feels like "a disabled person" and not "autistic" or "a person with autism" which isn't that great either, or "a person with a disability" or "a person living with a disability"--like how far away from me can you get it, is my question? "Amanda is a human being who is currently at this moment in time making her way around the planet with, um, a disability." Oh boy! Poor Amanda!
Poor Amanda indeed. I certainly feel like Poor Amanda at school sometimes because it hits all my energy drains--planning tasks/transitioning/starting tasks, looking normal, and putting enunciation and loudness (two things that are somewhat painful) together with lots of words that are appropriate in style for what's going on. Also recently there have been really good times like taking a class where the professor insults people with your disability, and the TA gives examples of what people with your disability are like (I know this doesn't sound bad but it makes me feel sick), and then in your other class someone writes a story about their sibling with your disability basically acting like their sibling is some sort of tornado instead of a twelve-year-old person. All of this stuff made me spend last term with an ever-expanding belief that I had schizophrenia, anemia, multiple sclerosis, and lots of other illnesses that I would look up on Wikipedia--I had gotten to a point of being extremely exhausted all the time and having such an immense amount of trouble making decisions and tolerating small amounts of stress that it was hard for me to do anything.
***
Sometimes I have a running mental conversation with myself about how to describe autism to people if I have to disclose. A recent one goes: "Autism is like being born with a giant pile of shit on your face, and at first you don't realize it's there, but eventually you do and you start washing it off, but even after you wash it off you can still smell it and other people can smell it too but they don't always know what it is they're smelling but they know it's bad."
***
My current job is the opposite because it avoids all my energy drains. I am working at a summer camp where we have to follow a strict schedule. I am never just drifting in time. All the campers have developmental disabilities and our focus is on relating and engaging with them, not on looking normal. Talking in a complicated-sounding way is not seen as valuable at all.
***
It's funny because what I don't like about the way some professionals and laypeople use the term "autistic children" (or autistic something elses, but mostly children) is that they act like autism is about a preference and a decision to disengage from other people because you aren't interested. Or to be violent or something because you don't care about other people's feelings or are selfish or mean. However, what I'm saying about "person with a disability" is actually a somewhat analogous characterization--because saying that people with autism aren't interested in other people, and that's why they don't look at them, implies that everyone can look at other people if they just work hard enough, and so on and so forth. It places the entire burden of managing autism on the person with autism. You can be a good autistic person--that is, a person with autism, who keeps their autism in a place where no one can see it. Or you can be a bad person, which is to say an autistic person, who is selfish and disruptive because they express their feelings, don't hide stimming, don't force eye contact, and so on.
***
In my creepy disability studies class that I dropped, someone did say something sort of good--they said something about the burden that disabled people get saddled with to educate other people about disability, and the unfairness of it when the disabled person has a disability that makes it impossible for them to fulfill that role.
That resonates. Sometimes I have the spoons to be a person with autism--a person who has autism like I have a backpack or a phone. I can leave my backpack in my room when I go to the mailbox. Some people see me walking around in the winter when I can carry my wallet and keys in my jacket pocket, and they don't know that I'm a person with a backpack. And my greatest problem, I guess, is just that if I say "I have a backpack" people might not believe me, because I don't look like someone who has a backpack.
If I am visibly disabled, or even do things that might not even be read as markers of disability but I know that's what they are, or if I just straight out mention it, I fear becoming disabled/autistic instead of A Person With because the truth is people do perceive you as lesser if your disability can't be contained. I have a feeling that they will become ethically better than me in all situations thanks to PAE, or just that they will always think they're going over my head. But I can't avoid that forever. I can't really be A Person With--A Person Who Has--because having something implies ownership and competence and sometimes those aren't things that I have in great enough supply that I can just treat autism like a possession. Sometimes I drop my thermos of autism and spill it all over myself.
***
In my current environment, the disability has been moved to the front. I'm a disabled person. Instead of a regular person handling something, I'm just a different kind of person. It's funny because I feel that at this job, my disability is an asset. I certainly don't understand everything that all other disabled people feel and experience, but I am pretty familiar with sensory issues, trouble communicating and making decisions, not looking at people, being under- or over-affectionate, and so on. It's not something I have to read about, I can just relate to it and I respect it easily. So right now it's nice to be a disabled person, but when I have to send the disability away from myself it turns into shit.
Just kidding, I am going to talk about what I do in practice. Being called "autistic" or calling other people "autistic" makes me uncomfortable and so I don't do it, but that's very specific stuff about the word autistic and how it feeds into cultural connotations about ASD that make me incredibly upset. However, although I guess I don't have much occasion to identify myself as just disabled (and when I do it's to pretentious social justice people, so I throw the term PWD around because they like acronyms) there is this really nice place in my head that goes "I'm a disabled person, I'm a disabled person" and it's seriously just one of the nicest-feeling phrases in the world. I like the word disabled, it looks soft, and it fits me neatly, and I enjoy the part of me that just feels like "a disabled person" and not "autistic" or "a person with autism" which isn't that great either, or "a person with a disability" or "a person living with a disability"--like how far away from me can you get it, is my question? "Amanda is a human being who is currently at this moment in time making her way around the planet with, um, a disability." Oh boy! Poor Amanda!
Poor Amanda indeed. I certainly feel like Poor Amanda at school sometimes because it hits all my energy drains--planning tasks/transitioning/starting tasks, looking normal, and putting enunciation and loudness (two things that are somewhat painful) together with lots of words that are appropriate in style for what's going on. Also recently there have been really good times like taking a class where the professor insults people with your disability, and the TA gives examples of what people with your disability are like (I know this doesn't sound bad but it makes me feel sick), and then in your other class someone writes a story about their sibling with your disability basically acting like their sibling is some sort of tornado instead of a twelve-year-old person. All of this stuff made me spend last term with an ever-expanding belief that I had schizophrenia, anemia, multiple sclerosis, and lots of other illnesses that I would look up on Wikipedia--I had gotten to a point of being extremely exhausted all the time and having such an immense amount of trouble making decisions and tolerating small amounts of stress that it was hard for me to do anything.
***
Sometimes I have a running mental conversation with myself about how to describe autism to people if I have to disclose. A recent one goes: "Autism is like being born with a giant pile of shit on your face, and at first you don't realize it's there, but eventually you do and you start washing it off, but even after you wash it off you can still smell it and other people can smell it too but they don't always know what it is they're smelling but they know it's bad."
***
My current job is the opposite because it avoids all my energy drains. I am working at a summer camp where we have to follow a strict schedule. I am never just drifting in time. All the campers have developmental disabilities and our focus is on relating and engaging with them, not on looking normal. Talking in a complicated-sounding way is not seen as valuable at all.
***
It's funny because what I don't like about the way some professionals and laypeople use the term "autistic children" (or autistic something elses, but mostly children) is that they act like autism is about a preference and a decision to disengage from other people because you aren't interested. Or to be violent or something because you don't care about other people's feelings or are selfish or mean. However, what I'm saying about "person with a disability" is actually a somewhat analogous characterization--because saying that people with autism aren't interested in other people, and that's why they don't look at them, implies that everyone can look at other people if they just work hard enough, and so on and so forth. It places the entire burden of managing autism on the person with autism. You can be a good autistic person--that is, a person with autism, who keeps their autism in a place where no one can see it. Or you can be a bad person, which is to say an autistic person, who is selfish and disruptive because they express their feelings, don't hide stimming, don't force eye contact, and so on.
***
In my creepy disability studies class that I dropped, someone did say something sort of good--they said something about the burden that disabled people get saddled with to educate other people about disability, and the unfairness of it when the disabled person has a disability that makes it impossible for them to fulfill that role.
That resonates. Sometimes I have the spoons to be a person with autism--a person who has autism like I have a backpack or a phone. I can leave my backpack in my room when I go to the mailbox. Some people see me walking around in the winter when I can carry my wallet and keys in my jacket pocket, and they don't know that I'm a person with a backpack. And my greatest problem, I guess, is just that if I say "I have a backpack" people might not believe me, because I don't look like someone who has a backpack.
If I am visibly disabled, or even do things that might not even be read as markers of disability but I know that's what they are, or if I just straight out mention it, I fear becoming disabled/autistic instead of A Person With because the truth is people do perceive you as lesser if your disability can't be contained. I have a feeling that they will become ethically better than me in all situations thanks to PAE, or just that they will always think they're going over my head. But I can't avoid that forever. I can't really be A Person With--A Person Who Has--because having something implies ownership and competence and sometimes those aren't things that I have in great enough supply that I can just treat autism like a possession. Sometimes I drop my thermos of autism and spill it all over myself.
***
In my current environment, the disability has been moved to the front. I'm a disabled person. Instead of a regular person handling something, I'm just a different kind of person. It's funny because I feel that at this job, my disability is an asset. I certainly don't understand everything that all other disabled people feel and experience, but I am pretty familiar with sensory issues, trouble communicating and making decisions, not looking at people, being under- or over-affectionate, and so on. It's not something I have to read about, I can just relate to it and I respect it easily. So right now it's nice to be a disabled person, but when I have to send the disability away from myself it turns into shit.
18 May, 2010
Our shrinking island
I
Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.
Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?
I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.
I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.
II
Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.
I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."
Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.
(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)
III
I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.
I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.
This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.
I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.
Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.
Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.
Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?
I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.
I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.
II
Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.
I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."
Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.
(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)
III
I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.
I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.
This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.
I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.
Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.
14 April, 2010
letter to my friend who identifies as Autistic
I guess maybe I'm weird but even though I don't like the word autistic, I really like the word Autistic. The first time I saw you use it I thought it was the cutest thing ever. Also, when you wrote my social story, you said something about how it would be nice to have "another Autistic friend who lived nearby," and when you said that it felt really nice.
I mean, maybe I just like it the way you like the words you associate with someone you like, but I don't think that's true, I think I like it for real.
I think my thoughts are:
1. I definitely don't like Aspie--well, obviously, because I don't identify that way, but also because it's mega cutesy anyway.
2. I actually like autie but it feels more casual and it's not something I would use most of the time. Sort of like calling myself gaygerms or calling people trial. [That is, something I do with good friends or when writing instructions for myself.]
3. I like ASD best because I can't be accused of being inaccurate, and because I don't have to declare a major (since I'm a double major, anyway) and also because I like the way it looks.
4. The reasons I don't like autistic are threefold:
A. While I do think autism is one disability like CP, blah blah blah, it kind of bugs me when mildly affected people identify as "autistic" without actually having experience with more severely affected people. I think there is a danger in taking the word "autistic" and applying it to yourself and the ASD people you know, if you are all mildly affected, because then in your mind autistic can come to only mean a particular kind of ASD people. I might not be explaining myself well, but do you see what I mean?
B. Obviously my life is much easier than and very different from the lives of people who are severely affected--although I've come through trial and error to think that things that are harmful to them are insulting to me, and I owe it to them to take it personally. But I would rather not have to explain to some boring strawman-using person that I understand autism is a spectrum and I'm not trying to say all ASD people are like me. I think that ASD gets this point across quicker.
C. In situations like my Child Developmental Disorders class, "autistic" feels like hate speech. I almost feel that autistic-identified people who are very offended by person-first language are, like...addressing a very small minority of normal people who are actually a lot more decent than most normal people. I feel like this supposed big group of normal people who are trying to oppress us with person-first language actually doesn't exist. I feel like a lot of normal people who say "people with autism" tend to be more compassionate towards ASD people, and obviously don't really know about the culture, but are past the really mainstream view of autism, which is:
"Autistic kids" are little monsters who don't care about anyone, are violent, etc. They rock, hit their heads, don't make connections, don't have feelings. They are very hard to live with. "High-functioning autistics" can talk and do brilliant things (with science and computers mostly) but they just talk about their interests all the time and they also don't care about anyone and they might rape you. Autism isn't a disability, it is actually a personality trait/kind of person--it means coldness and indifference.
I know that not everyone ASD is really plugged into this sort of idea but because of various experiences I've ended up being really hyperconscious of it and as a result, the word "autistic" (especially used as a noun) and ideas about "autism is who I am" make me really uncomfortable.
I think I told you this but when I was nineteen I had a friend who had just realized that she was a lesbian at age twenty. Unlike me, she had never thought of herself as being anything other than straight and had never personally dealt with homophobia. She hadn't come out to her parents or most of people around her. I'm not trying to say this to cut her down but just to set up the rest of what happened:
She had this habit of calling me a dyke, constantly, as a joke. When I was younger, I was called a dyke by people who did not see it as a positive term. It's a word that makes me feel awful. When I tried to tell my friend I didn't like it, she would say, "but I hear lesbians calling themselves that." That's how it sometimes makes me feel when ASD people run around saying autistic and calling each other autistic.
(While we're on this analogy, the word "queer" is used at Oberlin with no qualms at all--most non-straight people describe themselves this way, or at least are willing to accept it as a possible descriptor. A gay kid who is from a small midwestern town, and identifies himself on Facebook as "homosexual," mentioned that he found this really confusing and upsetting because he had only heard "queer" as an insult before.)
If I was talking to a normal person, and they said "my cousin has autism," I'd feel MUCH more comfortable with them than if they said "my cousin's autistic." I think the anti-person-first-language thing is sort of a really deep issue IN the ASD community, but in mainstream society, I feel like it's reversed.
5. However, Autistic sounds nice, because it sounds like you and I like you, but also because you can tell from the capital letter that it is about identity, so it gives agency to the person being described. While "autistic kids hit their heads on walls" doesn't give the people being described agency. Also Autistic just sounds kind of cute and old-fashioned, because even though Deaf is still Deaf and probably always will be, people are not Black or Gay or Lesbian anymore. I like old things (like you), so that's one reason I like it. If I stopped calling myself ASD, I would call myself Autistic.
Maybe the difference between my dad and us can be that my dad might be autistic but we're Autistic. Is that it?
(Disclaimer: as I said in my "Why I Dislike Person-Free Language" post, I respect plenty of people who identify as autistic and I'm not trying to insult anyone or say that anyone is being a jerk by using the word autistic--just exploring my feelings about it.)
PS--I forgot to put person-first language on the list, which is funny because it's what I use outside of the Internet. In real life I would probably say "I have autism" or "I have autism spectrum disorder"--or if I'm feeling wimpy, the ego-dystonic and not perfectly accurate "I have Asperger's." When I talk about other people with disabilities, especially ASD, I definitely use person-first language. In my CDD class it's very very important to me to say "kids with autism," "kids with intellectual disabilities," etc.
I mean, maybe I just like it the way you like the words you associate with someone you like, but I don't think that's true, I think I like it for real.
I think my thoughts are:
1. I definitely don't like Aspie--well, obviously, because I don't identify that way, but also because it's mega cutesy anyway.
2. I actually like autie but it feels more casual and it's not something I would use most of the time. Sort of like calling myself gaygerms or calling people trial. [That is, something I do with good friends or when writing instructions for myself.]
3. I like ASD best because I can't be accused of being inaccurate, and because I don't have to declare a major (since I'm a double major, anyway) and also because I like the way it looks.
4. The reasons I don't like autistic are threefold:
A. While I do think autism is one disability like CP, blah blah blah, it kind of bugs me when mildly affected people identify as "autistic" without actually having experience with more severely affected people. I think there is a danger in taking the word "autistic" and applying it to yourself and the ASD people you know, if you are all mildly affected, because then in your mind autistic can come to only mean a particular kind of ASD people. I might not be explaining myself well, but do you see what I mean?
B. Obviously my life is much easier than and very different from the lives of people who are severely affected--although I've come through trial and error to think that things that are harmful to them are insulting to me, and I owe it to them to take it personally. But I would rather not have to explain to some boring strawman-using person that I understand autism is a spectrum and I'm not trying to say all ASD people are like me. I think that ASD gets this point across quicker.
C. In situations like my Child Developmental Disorders class, "autistic" feels like hate speech. I almost feel that autistic-identified people who are very offended by person-first language are, like...addressing a very small minority of normal people who are actually a lot more decent than most normal people. I feel like this supposed big group of normal people who are trying to oppress us with person-first language actually doesn't exist. I feel like a lot of normal people who say "people with autism" tend to be more compassionate towards ASD people, and obviously don't really know about the culture, but are past the really mainstream view of autism, which is:
"Autistic kids" are little monsters who don't care about anyone, are violent, etc. They rock, hit their heads, don't make connections, don't have feelings. They are very hard to live with. "High-functioning autistics" can talk and do brilliant things (with science and computers mostly) but they just talk about their interests all the time and they also don't care about anyone and they might rape you. Autism isn't a disability, it is actually a personality trait/kind of person--it means coldness and indifference.
I know that not everyone ASD is really plugged into this sort of idea but because of various experiences I've ended up being really hyperconscious of it and as a result, the word "autistic" (especially used as a noun) and ideas about "autism is who I am" make me really uncomfortable.
I think I told you this but when I was nineteen I had a friend who had just realized that she was a lesbian at age twenty. Unlike me, she had never thought of herself as being anything other than straight and had never personally dealt with homophobia. She hadn't come out to her parents or most of people around her. I'm not trying to say this to cut her down but just to set up the rest of what happened:
She had this habit of calling me a dyke, constantly, as a joke. When I was younger, I was called a dyke by people who did not see it as a positive term. It's a word that makes me feel awful. When I tried to tell my friend I didn't like it, she would say, "but I hear lesbians calling themselves that." That's how it sometimes makes me feel when ASD people run around saying autistic and calling each other autistic.
(While we're on this analogy, the word "queer" is used at Oberlin with no qualms at all--most non-straight people describe themselves this way, or at least are willing to accept it as a possible descriptor. A gay kid who is from a small midwestern town, and identifies himself on Facebook as "homosexual," mentioned that he found this really confusing and upsetting because he had only heard "queer" as an insult before.)
If I was talking to a normal person, and they said "my cousin has autism," I'd feel MUCH more comfortable with them than if they said "my cousin's autistic." I think the anti-person-first-language thing is sort of a really deep issue IN the ASD community, but in mainstream society, I feel like it's reversed.
5. However, Autistic sounds nice, because it sounds like you and I like you, but also because you can tell from the capital letter that it is about identity, so it gives agency to the person being described. While "autistic kids hit their heads on walls" doesn't give the people being described agency. Also Autistic just sounds kind of cute and old-fashioned, because even though Deaf is still Deaf and probably always will be, people are not Black or Gay or Lesbian anymore. I like old things (like you), so that's one reason I like it. If I stopped calling myself ASD, I would call myself Autistic.
Maybe the difference between my dad and us can be that my dad might be autistic but we're Autistic. Is that it?
(Disclaimer: as I said in my "Why I Dislike Person-Free Language" post, I respect plenty of people who identify as autistic and I'm not trying to insult anyone or say that anyone is being a jerk by using the word autistic--just exploring my feelings about it.)
PS--I forgot to put person-first language on the list, which is funny because it's what I use outside of the Internet. In real life I would probably say "I have autism" or "I have autism spectrum disorder"--or if I'm feeling wimpy, the ego-dystonic and not perfectly accurate "I have Asperger's." When I talk about other people with disabilities, especially ASD, I definitely use person-first language. In my CDD class it's very very important to me to say "kids with autism," "kids with intellectual disabilities," etc.
28 March, 2010
this is a transcript, obviously
Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."
Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.
So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.
Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]
...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...
I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.
I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.
I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."
I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.
But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.
Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?
But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?
I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.
Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.
So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.
Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]
...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...
I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.
I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.
I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."
I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.
But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.
Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?
But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?
I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.
25 March, 2010
Why I Dislike Person-Free Language
I know this sounds like it's going to be a really intense/hardcore post, however I'm actually about to take a nap so this is very scattered (I was going to be like "I'm writing some thoughts that I'm going to expand later"--but actually I'm just going to write everything I think in as disorganized a way as possible)
1. it is one thing for another ASD person to refer to me as "autistic" (or "Autistic," which I find weirdly touching) but it's quite another to be in a psych class and have my teacher talking about "autistic kids" in a very othering way. And I can't help but feel that if she said "kids with autism" it couldn't sound quite as othering as it does. And I find myself always, always saying "kids with autism" (or "people with autism" when I'm not talking about kids)--although I'm totally fine saying "ASD kids," "PDD kids," "disabled kids"--well, sometimes I say "kids with disabilities" but it's more just because I like the sound of it or something. But "kids with autism" is actually a phrase that's important to me, I don't think I would ever use the phrase "autistic kids" in class, and maybe not at all.
2. furthermore, the word "autistic" used as a noun makes me uncomfortable.
3. I should mention that I'm obviously not trying to criticize anyone else's word use, in fact I know that my frequent (if far from constant) use of person-first language, and the fact that I identify as "ASD" instead of "autistic," are probably minority ways of using language among ASD people who share my beliefs. Just sorting it out for myself, and not trying to say that I think other people are being offensive (I mean, I hope it's apparent that I respect and admire the work of many people who use that kind of language--including the person who I am parodying in my post title, of course).
4. my discomfort with the word "autistic" could be related to the fact that it's a really fucked-up word. In case you couldn't tell, the word autistic means "really into yourself." This implies a bunch of really offensive stereotypes about ASD people which are very pervasive (pun intended) and, I think, very dangerous. In one of my psych textbooks, the illustration for the "Pervasive Developmental Disorders and Schizophrenia" chapter is a photo of a little girl kissing her reflection in a mirror. My professor recently said "autistic kids see other people as objects and only want them for what they can get from them," and this is far, far, far from the first time I've heard a statement like that in my life.
5. well, that is not what I'm like and it's not my belief about what other ASD people are like either. Some severely ASD people may not be running up to other people and hugging them and saying "I love you," but that's the case for a lot of people with severe disabilities, and it doesn't mean they're incredibly self-centered, it means they're severely disabled. Lots of severely disabled people do care about other people, and it's hateful and dangerous to claim that they don't. It's just weird to me that, for example, the word "idiot" is considered by some disabled people to be offensive because it used to be a clinical term for intellectually disabled people--and yet no one is upset by the word "autistic," which has a very obvious root in the word "autos," and seems to me to be clearly offensive. I mean, I know we can't examine everything, but this seems like such a major thing.
6. then the question is, why am I calling myself ASD when ASD has the word autism in it? Who the fuck knows. I guess because I feel like when I'm saying "I'm an Autism Spectrum Disorder person" it sounds like I'm saying, "I have a disorder/am disordered, the name of my disorder is Autism Spectrum Disorder"--not straight out, "I'm autistic [self-obsessed]." Also, the word "person" is in there, you know? You do not hear professionals saying "person," you hear them saying "autistic kids" and (when they remember us) "autistic adults" and so, so frequently, "individuals," "clients," "consumers"--well, fuck that, what about HUMANS WITH DISABILITIES? You know, LIVING BEINGS? With feelings and stuff?
7. even though the word "sufferer" is obviously awful, do you agree that there's a difference between saying "a cerebral palsy sufferer" and "a guy who suffers from cerebral palsy?" Because those feel worlds apart to me, and I almost don't mind the word suffer that much in the second phrase--like, it's obviously incorrect, but there's a difference between something where I'm like "well, actually..." and something that makes me feel really uncomfortable and alienated from the person who said it.
8. I call myself: an ASD person/a person who has ASD/a person with ASD; a disabled person/a person who has a disability/a person with a disability; a stimming person/a person who stims; a developmentally disabled person/"/"--except, I mean these are the things I call myself in situations where I feel I can use those terms and be understood. I very occasionally say "autistic" when I'm speaking, because it's easier, but only to people I know really well. When I feel like I can't use any of the terms I like, I say "Asperger's" with it sort of sticking in my throat, or I say "I have autism"...
9. ....and, I just used up my whole nap time. SHIT.
1. it is one thing for another ASD person to refer to me as "autistic" (or "Autistic," which I find weirdly touching) but it's quite another to be in a psych class and have my teacher talking about "autistic kids" in a very othering way. And I can't help but feel that if she said "kids with autism" it couldn't sound quite as othering as it does. And I find myself always, always saying "kids with autism" (or "people with autism" when I'm not talking about kids)--although I'm totally fine saying "ASD kids," "PDD kids," "disabled kids"--well, sometimes I say "kids with disabilities" but it's more just because I like the sound of it or something. But "kids with autism" is actually a phrase that's important to me, I don't think I would ever use the phrase "autistic kids" in class, and maybe not at all.
2. furthermore, the word "autistic" used as a noun makes me uncomfortable.
3. I should mention that I'm obviously not trying to criticize anyone else's word use, in fact I know that my frequent (if far from constant) use of person-first language, and the fact that I identify as "ASD" instead of "autistic," are probably minority ways of using language among ASD people who share my beliefs. Just sorting it out for myself, and not trying to say that I think other people are being offensive (I mean, I hope it's apparent that I respect and admire the work of many people who use that kind of language--including the person who I am parodying in my post title, of course).
4. my discomfort with the word "autistic" could be related to the fact that it's a really fucked-up word. In case you couldn't tell, the word autistic means "really into yourself." This implies a bunch of really offensive stereotypes about ASD people which are very pervasive (pun intended) and, I think, very dangerous. In one of my psych textbooks, the illustration for the "Pervasive Developmental Disorders and Schizophrenia" chapter is a photo of a little girl kissing her reflection in a mirror. My professor recently said "autistic kids see other people as objects and only want them for what they can get from them," and this is far, far, far from the first time I've heard a statement like that in my life.
5. well, that is not what I'm like and it's not my belief about what other ASD people are like either. Some severely ASD people may not be running up to other people and hugging them and saying "I love you," but that's the case for a lot of people with severe disabilities, and it doesn't mean they're incredibly self-centered, it means they're severely disabled. Lots of severely disabled people do care about other people, and it's hateful and dangerous to claim that they don't. It's just weird to me that, for example, the word "idiot" is considered by some disabled people to be offensive because it used to be a clinical term for intellectually disabled people--and yet no one is upset by the word "autistic," which has a very obvious root in the word "autos," and seems to me to be clearly offensive. I mean, I know we can't examine everything, but this seems like such a major thing.
6. then the question is, why am I calling myself ASD when ASD has the word autism in it? Who the fuck knows. I guess because I feel like when I'm saying "I'm an Autism Spectrum Disorder person" it sounds like I'm saying, "I have a disorder/am disordered, the name of my disorder is Autism Spectrum Disorder"--not straight out, "I'm autistic [self-obsessed]." Also, the word "person" is in there, you know? You do not hear professionals saying "person," you hear them saying "autistic kids" and (when they remember us) "autistic adults" and so, so frequently, "individuals," "clients," "consumers"--well, fuck that, what about HUMANS WITH DISABILITIES? You know, LIVING BEINGS? With feelings and stuff?
7. even though the word "sufferer" is obviously awful, do you agree that there's a difference between saying "a cerebral palsy sufferer" and "a guy who suffers from cerebral palsy?" Because those feel worlds apart to me, and I almost don't mind the word suffer that much in the second phrase--like, it's obviously incorrect, but there's a difference between something where I'm like "well, actually..." and something that makes me feel really uncomfortable and alienated from the person who said it.
8. I call myself: an ASD person/a person who has ASD/a person with ASD; a disabled person/a person who has a disability/a person with a disability; a stimming person/a person who stims; a developmentally disabled person/"/"--except, I mean these are the things I call myself in situations where I feel I can use those terms and be understood. I very occasionally say "autistic" when I'm speaking, because it's easier, but only to people I know really well. When I feel like I can't use any of the terms I like, I say "Asperger's" with it sort of sticking in my throat, or I say "I have autism"...
9. ....and, I just used up my whole nap time. SHIT.
10 March, 2010
The Veil/On Speaking Badly, part 2
Sometimes, in writing workshops, people will just start evaluating your character! It's sort of hard to tell if this is cute or offensive. Especially given the evaluation I received last night:
"Amanda speaks from behind this veil of shyness and uncertainty, and, like, in class she's always apologizing and you think she's just rambling, but the veil is deceptive; behind it there's this brute force of powerful honesty."
No, I fucking don't know how people can say this stuff out loud. Veil? Am I Sirius Black? I'm not even exactly saying it's a bad thing to say, but just that I'm impressed that someone can come up with an image so fast and just spit it out and have it mean something right away. Or even if he wrote it down first, how did he deliver it in a way that didn't sound scripted?
And therein lies the problem.
I am not the way I talk. I just want to say that, over and over again. I mean, there are some classes where I would describe myself as shy but this isn't one of them. Sometimes I don't do the reading, so I don't talk then. I talk during workshops. I say stuff. Even in classes where I don't talk, it's not like talking makes me terrified. I just know I'm a shitty talker, that I sort of mumble a bunch of words, as simple as possible, definitely not anything as smart as talking about a veil--I mean, any attempt to use creative language just turns into me sounding the way people with schizophrenia talk in my Abnormal Psych textbook. Is it disorganized speech if you're capable of speaking normally if you plan it out beforehand? Well, it doesn't really matter, I can't exactly plan for every topic that could possibly arise. So it comes out like this, or not at all.
But I'm not. Fucking. Shy.
This is a situation I'm kind of prone to, where I make a really mean blog post about someone who I actually have no problem with in Real Life. This guy in my class is a really good writer and seems nice. I don't doubt he meant what he said completely positively. But it's kind of weird to have your speech issues characterized as "shyness" and a "veil." And the fact that you don't lie (which isn't a choice) characterized as some sort of accomplishment or virtue. I don't know. I mean, my story wasn't very good and I understand that a lot of people were saying it was "honest" maybe as a way of being tactful. That's fine. But that doesn't mean I have to be told that I'm honest.
If I just say what I think, people tend to laugh because it's so plain and brief--and that is maybe part of why I say so many ums and apologize so much, just to kind of mask it and pad it a little. But I'm so fucking careful about what I say in class! I can't believe someone still thinks it's rambling.
As you can probably imagine, I spend most of my time in class feeling incredibly stupid. And then, sometimes, it just hits me, when some jargony English major says, "Why are you so sure the speaker of this poem is a woman?" when the poem is about being pregnant--I'm actually smarter than some of them. It's just the way I talk. I remember when I realized last year, in my Aeneid class, that my professor's look of bafflement didn't mean my translation was actually bad. He was just knocked off balance by The Veil.
I'm sort of joking calling it The Veil, of course; it's not a way of hiding any more than any other way of talking is. It's kind of stupid that my inability to adjust to the way people are supposed to talk in different settings, and the fact that I think of content more slowly and tend to have to cover for that by any means necessary, are seen as being some sort of disguise. Other people talk differently in class and out of class, and even in different classes. Isn't that more of a disguise? If you're going to call anyone's way of being a disguise, I mean.
Just like I'm stuck sounding stupid, there are presumably ASD people who are stuck sounding smart. Actually, no presumably about it, I just met one. He can do pretty much everything I can't, and I'm sort of jealous, but on the other hand he probably doesn't get half as much free stuff as I do. In non-academic contexts, the way I talk can read as very charming.
"Amanda speaks from behind this veil of shyness and uncertainty, and, like, in class she's always apologizing and you think she's just rambling, but the veil is deceptive; behind it there's this brute force of powerful honesty."
No, I fucking don't know how people can say this stuff out loud. Veil? Am I Sirius Black? I'm not even exactly saying it's a bad thing to say, but just that I'm impressed that someone can come up with an image so fast and just spit it out and have it mean something right away. Or even if he wrote it down first, how did he deliver it in a way that didn't sound scripted?
And therein lies the problem.
I am not the way I talk. I just want to say that, over and over again. I mean, there are some classes where I would describe myself as shy but this isn't one of them. Sometimes I don't do the reading, so I don't talk then. I talk during workshops. I say stuff. Even in classes where I don't talk, it's not like talking makes me terrified. I just know I'm a shitty talker, that I sort of mumble a bunch of words, as simple as possible, definitely not anything as smart as talking about a veil--I mean, any attempt to use creative language just turns into me sounding the way people with schizophrenia talk in my Abnormal Psych textbook. Is it disorganized speech if you're capable of speaking normally if you plan it out beforehand? Well, it doesn't really matter, I can't exactly plan for every topic that could possibly arise. So it comes out like this, or not at all.
But I'm not. Fucking. Shy.
This is a situation I'm kind of prone to, where I make a really mean blog post about someone who I actually have no problem with in Real Life. This guy in my class is a really good writer and seems nice. I don't doubt he meant what he said completely positively. But it's kind of weird to have your speech issues characterized as "shyness" and a "veil." And the fact that you don't lie (which isn't a choice) characterized as some sort of accomplishment or virtue. I don't know. I mean, my story wasn't very good and I understand that a lot of people were saying it was "honest" maybe as a way of being tactful. That's fine. But that doesn't mean I have to be told that I'm honest.
If I just say what I think, people tend to laugh because it's so plain and brief--and that is maybe part of why I say so many ums and apologize so much, just to kind of mask it and pad it a little. But I'm so fucking careful about what I say in class! I can't believe someone still thinks it's rambling.
As you can probably imagine, I spend most of my time in class feeling incredibly stupid. And then, sometimes, it just hits me, when some jargony English major says, "Why are you so sure the speaker of this poem is a woman?" when the poem is about being pregnant--I'm actually smarter than some of them. It's just the way I talk. I remember when I realized last year, in my Aeneid class, that my professor's look of bafflement didn't mean my translation was actually bad. He was just knocked off balance by The Veil.
I'm sort of joking calling it The Veil, of course; it's not a way of hiding any more than any other way of talking is. It's kind of stupid that my inability to adjust to the way people are supposed to talk in different settings, and the fact that I think of content more slowly and tend to have to cover for that by any means necessary, are seen as being some sort of disguise. Other people talk differently in class and out of class, and even in different classes. Isn't that more of a disguise? If you're going to call anyone's way of being a disguise, I mean.
Just like I'm stuck sounding stupid, there are presumably ASD people who are stuck sounding smart. Actually, no presumably about it, I just met one. He can do pretty much everything I can't, and I'm sort of jealous, but on the other hand he probably doesn't get half as much free stuff as I do. In non-academic contexts, the way I talk can read as very charming.
25 February, 2010
This woman is a delight; and, On Speaking Badly.
Andrea Fay Friedman, the woman in this video, portrayed a character on Family Guy who has Down Syndrome and, when asked what her parents do, says, "My mother is the former governor of Alaska." Palin had a shitfit of course, and then Friedman did some interviews saying that she thinks it's funny and Palin should get a sense of humor. In this video she becomes visibly upset about the fact that Palin is using Trig's disability to get attention. Friedman emphasizes that her parents gave her a normal childhood and that's what Trig should be able to have too.
(Transcript by Tlonista here at FWD/Forward.)
Some person commented and said that Friedman obviously didn't understand the situation because she said Palin was trying to use Trig to get "votes." Argh, why does it matter whether she used exactly the right word for what she was trying to say?
I remember that I used to have this reaction to videos of intellectually disabled people talking with other people, where if they didn't talk that much, or spoke in a cliched or prepared-sounding way, I would think that maybe they weren't expressing their own opinions. Specifically, I'm talking about videos where the star of "Retarded Policeman" would appear with a non-disabled friend or family member, and express that he was okay with being in the show, and that people shouldn't get offended on his behalf. (There was also a video saying that he was okay with the word "retard" in Tropic Thunder.) This is the first video, where he appears with his sister:
Ponce: Hello, world. Josh "The Ponceman" Perry here, with my sister Stacey.
Stacey: Hi, guys. We've been reading a lot of your comments and wanted to clear a few things up about Josh. Josh is an actor.
Ponce: And I am hilarious!
Stacey: He is hilarious. And he loves acting.
Ponce: And I want to do this for a living.
Stacey: So just sit back...
Ponce: And enjoy it.
Stacey: And to all you people who have a problem with Josh acting, or even if you find it offensive in any way...
Ponce: I just want to say, I have Down Syndrome, but you people are fucking retarded.
Stacey: As the Retarded Policeman would say...
Ponce and Stacey: (in Retarded Policeman voice) Bye!
Ponce and his brother Scott (who writes and acts in short films with Ponce, and also wrote some of the Retarded Policeman videos) ended up refusing to make any more Retarded Policeman videos because they said that Ponce wasn't being paid enough given how successful the videos were, and made a video about that.
Josh: Hey people.
Scott: Hey guys. The reason Ponce and I are doing this video is because, over the past year, we've had a ton of our friends and fans ask us why we're not doing Retarded Policeman anymore, and why there's no new episodes.
Josh: I love the show and I liked doing it.
Scott: Yeah, in all sincerity, we absolutely loved doing Retarded Policeman. It's one of our favorite things. However, the simple answer as to why we're not doing it anymore is that we had an agreement with Mediocre Films that has not been honored. That's really all I want to say about it. Um, we, um, we put a blog up about that if you guys want to check that out, it's http://theperryboys.wordpress.com, we'll put the link here, and put the link in the side there. But believe me when I say that we have tried everything that we could for this past year--basically, all year, trying to work something out and make things okay so that we could continue, but we've sadly reached an impasse--like, we know we're not gonna work things out. Uh...that's it--anything else?
Josh: I just want to say, from the bottom of my heart, I loved doing Retarded Policeman, and I love all your comments, and I just want to say, from the bottom of my heart, it breaks my heart.
Scott: Okay. Just leave us comments, you know--we love your comments here, we love your comments there. That's it, we're gonna move on, we're gonna do bigger better things, we're gonna keep doing what we do, and that's it, right? Out and out.
Josh: (in Retarded Policeman voice) Bye!
Scott: (snickers) Nice.
When I first watched these videos I felt uncertain. If Ponce was really expressing himself, then why did the things he say either sound scripted, or sort of unfocused; and why did he generally not take the lead in expressing points? Then I realized how dumb my reaction was. If I was making a video like this, I would want someone else to express the big points. I'm not such a good talker myself, and it sucks when people think that (because I say "like" a lot or lose my train of thought or have to prepare what I'm going to say) I'm not sincere. Sometimes I even start thinking that I don't know what I'm talking about, just because I can't produce an immediate response when someone says something. So I couldn't believe that I would judge whether someone else was expressing their own thoughts, just based on whether they talked "well."
Andrea Fay Friedman is obviously emotionally affected by the idea that Trig isn't being allowed to have a normal life. As a person whose parents were told to put her in an institution when she was born, Friedman doubtless has a clear idea of the prejudice that people with Down Syndrome face, and the pity and admiration points a person can rack up just for having a kid with Down Syndrome. So why the fuck isn't Friedman allowed to say that she thinks Palin is exploiting that, and that Trig deserves to have parents as good as Friedman's? Who cares if she uses the word "votes?"
(In the event that Ponce/Josh Perry is one of those people who Googles himself all the time, and finds this: Dear Ponce, I hope that you don't think I'm insulting or criticizing the way you talk. Just trying to explain how stupid it is to judge people by the way they talk. I really like the videos you and Scott do, especially the Paranormal Activity one.)
(Transcript by Tlonista here at FWD/Forward.)
Some person commented and said that Friedman obviously didn't understand the situation because she said Palin was trying to use Trig to get "votes." Argh, why does it matter whether she used exactly the right word for what she was trying to say?
I remember that I used to have this reaction to videos of intellectually disabled people talking with other people, where if they didn't talk that much, or spoke in a cliched or prepared-sounding way, I would think that maybe they weren't expressing their own opinions. Specifically, I'm talking about videos where the star of "Retarded Policeman" would appear with a non-disabled friend or family member, and express that he was okay with being in the show, and that people shouldn't get offended on his behalf. (There was also a video saying that he was okay with the word "retard" in Tropic Thunder.) This is the first video, where he appears with his sister:
Ponce: Hello, world. Josh "The Ponceman" Perry here, with my sister Stacey.
Stacey: Hi, guys. We've been reading a lot of your comments and wanted to clear a few things up about Josh. Josh is an actor.
Ponce: And I am hilarious!
Stacey: He is hilarious. And he loves acting.
Ponce: And I want to do this for a living.
Stacey: So just sit back...
Ponce: And enjoy it.
Stacey: And to all you people who have a problem with Josh acting, or even if you find it offensive in any way...
Ponce: I just want to say, I have Down Syndrome, but you people are fucking retarded.
Stacey: As the Retarded Policeman would say...
Ponce and Stacey: (in Retarded Policeman voice) Bye!
Ponce and his brother Scott (who writes and acts in short films with Ponce, and also wrote some of the Retarded Policeman videos) ended up refusing to make any more Retarded Policeman videos because they said that Ponce wasn't being paid enough given how successful the videos were, and made a video about that.
Josh: Hey people.
Scott: Hey guys. The reason Ponce and I are doing this video is because, over the past year, we've had a ton of our friends and fans ask us why we're not doing Retarded Policeman anymore, and why there's no new episodes.
Josh: I love the show and I liked doing it.
Scott: Yeah, in all sincerity, we absolutely loved doing Retarded Policeman. It's one of our favorite things. However, the simple answer as to why we're not doing it anymore is that we had an agreement with Mediocre Films that has not been honored. That's really all I want to say about it. Um, we, um, we put a blog up about that if you guys want to check that out, it's http://theperryboys.wordpress.com, we'll put the link here, and put the link in the side there. But believe me when I say that we have tried everything that we could for this past year--basically, all year, trying to work something out and make things okay so that we could continue, but we've sadly reached an impasse--like, we know we're not gonna work things out. Uh...that's it--anything else?
Josh: I just want to say, from the bottom of my heart, I loved doing Retarded Policeman, and I love all your comments, and I just want to say, from the bottom of my heart, it breaks my heart.
Scott: Okay. Just leave us comments, you know--we love your comments here, we love your comments there. That's it, we're gonna move on, we're gonna do bigger better things, we're gonna keep doing what we do, and that's it, right? Out and out.
Josh: (in Retarded Policeman voice) Bye!
Scott: (snickers) Nice.
When I first watched these videos I felt uncertain. If Ponce was really expressing himself, then why did the things he say either sound scripted, or sort of unfocused; and why did he generally not take the lead in expressing points? Then I realized how dumb my reaction was. If I was making a video like this, I would want someone else to express the big points. I'm not such a good talker myself, and it sucks when people think that (because I say "like" a lot or lose my train of thought or have to prepare what I'm going to say) I'm not sincere. Sometimes I even start thinking that I don't know what I'm talking about, just because I can't produce an immediate response when someone says something. So I couldn't believe that I would judge whether someone else was expressing their own thoughts, just based on whether they talked "well."
Andrea Fay Friedman is obviously emotionally affected by the idea that Trig isn't being allowed to have a normal life. As a person whose parents were told to put her in an institution when she was born, Friedman doubtless has a clear idea of the prejudice that people with Down Syndrome face, and the pity and admiration points a person can rack up just for having a kid with Down Syndrome. So why the fuck isn't Friedman allowed to say that she thinks Palin is exploiting that, and that Trig deserves to have parents as good as Friedman's? Who cares if she uses the word "votes?"
(In the event that Ponce/Josh Perry is one of those people who Googles himself all the time, and finds this: Dear Ponce, I hope that you don't think I'm insulting or criticizing the way you talk. Just trying to explain how stupid it is to judge people by the way they talk. I really like the videos you and Scott do, especially the Paranormal Activity one.)
07 February, 2010
Neurodiversity?
I have a tendency to make comments on FWD/Forward that aren’t completely on topic and then they don’t get posted and I feel incredibly guilty and anxious about it. It’s true I feel incredibly guilty and anxious about everything that could be construed as a social mistake, but come on, let’s try to avoid it in this particular arena by just making posts on my blog when I’m tempted to comment in an off-topic way! First up: neurodiversity.
I don’t understand what the point of the term neurodiversity is. Someone on the FWD/Forward thread mentioned “many ASD people don’t know that neurodiversity includes other, non-ASD people with different brains.” Which is like...I guess it’s cool that it’s not just ASD people (even if some ASD people think it is) but what’s wrong with just saying “disability rights,” or “autism/ASD rights” if you’re talking about ASD in particular? Wouldn’t disability rights be more inclusive if you’re trying to be inclusive, and if you are focusing on ASD, wouldn’t ASD rights be a more unambiguous and straightforward way to put it?
It just occurred to me that the point of neurodiversity is, maybe, a catchier way to say “non-physical disability rights.” That actually makes sense. It still sort of grates on my nerves because it sounds incredibly cheery, like “differently abled.” Also I’m not sure if that’s what people actually use it for.
The term just makes me uncomfortable. It seems like an attempt to separate ASD people from other disabled people. Or, if not just ASD, disabilities that have a stereotype of Awesome Side Effects that are supposed to make up for the deficits--ADD, depression, bipolar disorder, etc. This is emphasized for me by the term neurodiversity itself. Diversity is a term that has been frequently used in reference to race, ethnicity, religion, class, and sometimes sexual orientation. Disability is being set up as the same as all those things. “We’re the same as you, just leave us alone and we’ll be fine.” But sometimes we won’t be fine. We need help sometimes. Sometimes our impairments are socially constructed (like stimming) but other times we really are worse at doing something that would help us (like processing and using language). I don’t think the difference between PWDs and other minority groups is so huge that we can’t be inspired and encouraged by the way other groups fight for equality, but at the same time, we can’t be fit into exactly the same “live and let live” model. (Actually I’d argue that it’s not a good model for many minority groups. But I’m tangling myself up.)
I feel the same about the explanation of neurodiversity (said by one of the FWD/Forward commenters, I think) as “people have different brains and that’s okay.” This just seems disingenuous. I’m not different, I’m IMPAIRED. And there are people who are a lot more impaired than me who have a lot more to fear than I do from the idea of disability as a neutral "difference."
I don’t know, I might be tilting at windmills, or at the very least semantics (there’s no question that many people I admire and agree with identify with neurodiversity). What do you think?
I don’t understand what the point of the term neurodiversity is. Someone on the FWD/Forward thread mentioned “many ASD people don’t know that neurodiversity includes other, non-ASD people with different brains.” Which is like...I guess it’s cool that it’s not just ASD people (even if some ASD people think it is) but what’s wrong with just saying “disability rights,” or “autism/ASD rights” if you’re talking about ASD in particular? Wouldn’t disability rights be more inclusive if you’re trying to be inclusive, and if you are focusing on ASD, wouldn’t ASD rights be a more unambiguous and straightforward way to put it?
It just occurred to me that the point of neurodiversity is, maybe, a catchier way to say “non-physical disability rights.” That actually makes sense. It still sort of grates on my nerves because it sounds incredibly cheery, like “differently abled.” Also I’m not sure if that’s what people actually use it for.
The term just makes me uncomfortable. It seems like an attempt to separate ASD people from other disabled people. Or, if not just ASD, disabilities that have a stereotype of Awesome Side Effects that are supposed to make up for the deficits--ADD, depression, bipolar disorder, etc. This is emphasized for me by the term neurodiversity itself. Diversity is a term that has been frequently used in reference to race, ethnicity, religion, class, and sometimes sexual orientation. Disability is being set up as the same as all those things. “We’re the same as you, just leave us alone and we’ll be fine.” But sometimes we won’t be fine. We need help sometimes. Sometimes our impairments are socially constructed (like stimming) but other times we really are worse at doing something that would help us (like processing and using language). I don’t think the difference between PWDs and other minority groups is so huge that we can’t be inspired and encouraged by the way other groups fight for equality, but at the same time, we can’t be fit into exactly the same “live and let live” model. (Actually I’d argue that it’s not a good model for many minority groups. But I’m tangling myself up.)
I feel the same about the explanation of neurodiversity (said by one of the FWD/Forward commenters, I think) as “people have different brains and that’s okay.” This just seems disingenuous. I’m not different, I’m IMPAIRED. And there are people who are a lot more impaired than me who have a lot more to fear than I do from the idea of disability as a neutral "difference."
I don’t know, I might be tilting at windmills, or at the very least semantics (there’s no question that many people I admire and agree with identify with neurodiversity). What do you think?
19 January, 2010
recent flowery language on my part
(besides fwd being like that episode of Mr. Show)
Noah: I'm going to enter the New Yorker caption contest.
Me: You should enter the anti-caption contest, it's better.
Noah: No, because I want you to see me in the New Yorker. My caption is going to have your name in it.
Me: What?
Noah: Like, "So Amanda, when can you start work?"
Me: But how will I know it's my name and not another person named Amanda?
Noah: Because it'll say "submitted by Noah Schwarz."
Me: Noah, I really miss you, I sort of forgot. I still feel like you're a lot of cookies that I found under the bed, you know? I think I'll always feel that way.
Me: Oh, you're not boring! You're the bane of the world. You're, like, the Hound of the Baskervilles!
When you're ASD being normal is like a mosaic, and what I mean by this is that it's all a bunch of systems and rules that get smaller and smaller until you can barely see them and I just look like any other picture, but I'm really made up of squares and that will always be visible at close range. I'm clunkier and not as fluid.
Noah: I'm going to enter the New Yorker caption contest.
Me: You should enter the anti-caption contest, it's better.
Noah: No, because I want you to see me in the New Yorker. My caption is going to have your name in it.
Me: What?
Noah: Like, "So Amanda, when can you start work?"
Me: But how will I know it's my name and not another person named Amanda?
Noah: Because it'll say "submitted by Noah Schwarz."
Me: Noah, I really miss you, I sort of forgot. I still feel like you're a lot of cookies that I found under the bed, you know? I think I'll always feel that way.
Me: Oh, you're not boring! You're the bane of the world. You're, like, the Hound of the Baskervilles!
When you're ASD being normal is like a mosaic, and what I mean by this is that it's all a bunch of systems and rules that get smaller and smaller until you can barely see them and I just look like any other picture, but I'm really made up of squares and that will always be visible at close range. I'm clunkier and not as fluid.
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