Joshua: I was wondering, do you see anything disabled metaphory about Prisioner of Azkaban?
me: about who?
I mean, Lupin duh, do you mean other people?
Joshua: cos my favourite part of the book was hearing about how James, Sirius and Peter turn themselves into animagi to understand and help Lupin with his "condition" I thought it was really touching and poetic. But like, is that like magical crip drag or just magical.. being willing to see the world from a disabled persons perspective rather than trying to make them "normal"?
me: that's always been my favorite chapter in any of the books, I used to read it over and over when I was a kid
like, I think James and Sirius are kind of like Freddie and Cook
well, you won't get to this for a while
but I feel like Remus is often characterized as feeling like he doesn't have a right to his own opinions because he owes them so much
Joshua: ooohh I love that analogy
the Freddie/Cook/JJ one
me: well, I think given stuff Remus says later, it makes a lot of sense.
um...yeah
I wouldn't call it crip drag or anything like that
I think I wouldn't exactly call it goodness or kindness, totally--but maybe that's what Remus needed
Joshua: no, I didn't think it was, but I thought i'd speculate that possibility!
me: like, they were doing it for fun, partly. I think they didn't totally get it
Joshua: were James and Sirius kind of dicks when they were young? I haven't read to this bit but I've had some naughty wiki glancing
me: I may be projecting/imagining, but I feel like James and Sirius probably didn't understand how much Remus didn't think turning into an animal was fun
Joshua: weren't*
me: so, hm, maybe we will call it crip drag
yup!
and Remus was afraid to say anything
me: JK Rowling also said this: "Lupin’s failing is he likes to be liked. That’s where he slips up – he’s been disliked so often he’s always pleased to have friends so he cuts them an awful lot of slack."
(by the way, here is very long post/essay I wrote on the Skins livejournal community about my love for JJ, which at some points discusses JJ's unequal relationship with Freddie and Cook.)
31 March, 2011
30 March, 2011
23 March, 2011
I can hear the laughs
I know this is what tumblr is for, but I just covered one of my Lifetime Favorite Songs (literally since I was 12), and, because of the things I have been writing about the last few days, I have been thinking how disability, music, sexuality, and religion all feel to me like sort of the same thing, and this song covers it all which is maybe why it always feels to me like it contains everything I'll ever need to hear.
You can really fall, wake up in a ruined house,
wrapped up in a torn-down curtain.
And when I get to hell will the lovely girls come down
to the banks of that red, red river?
I can hear the laughs when they find I've fallen down again.
I can hear the laughs and it hurts so bad I have to smile.
You can take a lot, put back not a thing,
still come home looking thinner.
And when I get to Oz, will the lovely witch come down,
kiss my pale, bleeding brow?
I can hear the laughs when they find I've fallen down again.
I can hear the laughs and it hurts so bad I have to smile.
You can really fall, wake up in a ruined house,
wrapped up in a torn-down curtain.
And when I get to hell will the lovely girls come down
to the banks of that red, red river?
I can hear the laughs when they find I've fallen down again.
I can hear the laughs and it hurts so bad I have to smile.
You can take a lot, put back not a thing,
still come home looking thinner.
And when I get to Oz, will the lovely witch come down,
kiss my pale, bleeding brow?
I can hear the laughs when they find I've fallen down again.
I can hear the laughs and it hurts so bad I have to smile.
the ultimate (ridiculous) showdown
The reason I've been thinking about intersectionality even more than usual is that I keep seeing these little queer/trans (usually just queer, but trans, in this case) vs. disabled setups.
Sometimes the person doing it doesn't see it.
A queer person attempts to talk about intersectionality and they list race and class. Talking about situations where disability would OBVIOUSLY be an issue, they list race and class.
A guy wrote a column in the school newspaper saying that the "It Gets Better" project is comparable to telling someone to stay in an abusive relationship and it should be called the "You Can Make It Better" project. (Maybe I need to explain my reaction to this further, but--how does he know?)
Then these actual open conflicts happen. How dare anorexic cis people say they have body dysphoria! Or, my favorite--how dare Autistic people (assumed to be straight, usually wrongly, as the Autistic community is heavily queer) try to explain our situation by saying, "What if all the dialogue about gay people was controlled by straight people and was about curing homosexuality?" We obviously don't understand Their Struggles. After all, a gay person pointed out in this conversation, no one gets killed for being Autistic.
Brilliant, guys.
In terms of the Autistic community, at least, it just especially bugs me because...it's so queer, and not just because many of us are. A straight person in the Autistic community is so much smarter and more familiar, when it comes to queer stuff, than nearly any non-disabled straight person, because you just can't get away from queerness. So like, when a bunch of queer non-disabled people who know nothing about disability, the Autistic experience in particular, or our community, start fucking trying to educate us because they think we're cluelessly comparing ourselves to them, I just explode. My head explodes. There are little pieces of my skull and hair lying on the floor around me.
QUIT IT.
I'm taking a student-taught class where we watch Disney movies and analyze the portrayal of (mostly) gender and sexuality, but other stuff when it comes up. Most of the people in the class are queer. Someone asked me what my paper was on, and I said it was on non-humans trying to be human and how that relates to disability. "Oh, wow, disability?" the person said like I was so creative for thinking of such a thing.
Sometimes the person doing it doesn't see it.
A queer person attempts to talk about intersectionality and they list race and class. Talking about situations where disability would OBVIOUSLY be an issue, they list race and class.
A guy wrote a column in the school newspaper saying that the "It Gets Better" project is comparable to telling someone to stay in an abusive relationship and it should be called the "You Can Make It Better" project. (Maybe I need to explain my reaction to this further, but--how does he know?)
Then these actual open conflicts happen. How dare anorexic cis people say they have body dysphoria! Or, my favorite--how dare Autistic people (assumed to be straight, usually wrongly, as the Autistic community is heavily queer) try to explain our situation by saying, "What if all the dialogue about gay people was controlled by straight people and was about curing homosexuality?" We obviously don't understand Their Struggles. After all, a gay person pointed out in this conversation, no one gets killed for being Autistic.
Brilliant, guys.
In terms of the Autistic community, at least, it just especially bugs me because...it's so queer, and not just because many of us are. A straight person in the Autistic community is so much smarter and more familiar, when it comes to queer stuff, than nearly any non-disabled straight person, because you just can't get away from queerness. So like, when a bunch of queer non-disabled people who know nothing about disability, the Autistic experience in particular, or our community, start fucking trying to educate us because they think we're cluelessly comparing ourselves to them, I just explode. My head explodes. There are little pieces of my skull and hair lying on the floor around me.
QUIT IT.
I'm taking a student-taught class where we watch Disney movies and analyze the portrayal of (mostly) gender and sexuality, but other stuff when it comes up. Most of the people in the class are queer. Someone asked me what my paper was on, and I said it was on non-humans trying to be human and how that relates to disability. "Oh, wow, disability?" the person said like I was so creative for thinking of such a thing.
22 March, 2011
something just hit me!
privileged identities also interact with marginalized identities.
(gay is an example.)
we often describe ourselves by our marginalized identities because of course those are the ones we've been forced to think about. but white + gay is an experience. when people say, "don't talk about the gay experience as if everyone who's gay is white," what I think this should mean is that instead of saying gay when we mean white + gay, when we say gay we should mean a very specific isolated factor, and when we mean x + gay we say x + gay, and we are aware that there are so many "____ + gay" experiences and we try to talk about ours and not get in the way of other people talking about theirs.
I'm trying to articulate what bothers me about a particular way the term "intersectionality" is sometimes used, and I think what I want to say is that people sort of start using gay to mean "marginalized identity + gay," which, while obviously less harmful because it doesn't have the same oppression behind it as saying gay and meaning "white + gay," is also inaccurate and gets in the way of talking about The Whole Thing. I also think that people can kind of get on this track where it's like, being gay only counts as a marginalized identity if you have it with another marginalized identity. You have to have more than one to have any.
I hope this doesn't sound like I'm saying it about a lot of people because the post I'm making is basically about how much I love intersectionality. But I do think sometimes the word is used to mean something that actually makes things worse--and I think of intersectionality as this math that explains everything, but this misuse of intersectionality runs the numbers together and wastes the clarity of the idea.
(gay is an example.)
we often describe ourselves by our marginalized identities because of course those are the ones we've been forced to think about. but white + gay is an experience. when people say, "don't talk about the gay experience as if everyone who's gay is white," what I think this should mean is that instead of saying gay when we mean white + gay, when we say gay we should mean a very specific isolated factor, and when we mean x + gay we say x + gay, and we are aware that there are so many "____ + gay" experiences and we try to talk about ours and not get in the way of other people talking about theirs.
I'm trying to articulate what bothers me about a particular way the term "intersectionality" is sometimes used, and I think what I want to say is that people sort of start using gay to mean "marginalized identity + gay," which, while obviously less harmful because it doesn't have the same oppression behind it as saying gay and meaning "white + gay," is also inaccurate and gets in the way of talking about The Whole Thing. I also think that people can kind of get on this track where it's like, being gay only counts as a marginalized identity if you have it with another marginalized identity. You have to have more than one to have any.
I hope this doesn't sound like I'm saying it about a lot of people because the post I'm making is basically about how much I love intersectionality. But I do think sometimes the word is used to mean something that actually makes things worse--and I think of intersectionality as this math that explains everything, but this misuse of intersectionality runs the numbers together and wastes the clarity of the idea.
notes for something longer
(This looks better in my notebook in a bunch of little squares and lumps and stick figures, but oh well.)
PRESCRIPTIVE IDENTITIES (this was a flow chart)
A. Identities which are based in transcending stigma.--->Not everyone can or wants to transcend.
B. Identities which are based on denying the reality of stigma, embracing stigma, and/or denying categories.--->Stigma is real. Not everyone can afford the consequences of embracing it. Some people need or want to think about their lives in terms of categories so they can understand the ways they are disadvantaged and try to function.--->B ultimately becomes a denial of difference and privilege
So, A and B, as descriptors for minority groups, fail because they make assumptions about members of the group. An A or B identity may pretend to mean one thing, but actually it means many unspoken things. More than one fact must be true for a person to belong.*
*"People whose favorite color is blue" comes to be synonymous with "people who have a blue car." John's favorite color is blue, but he doesn't have a car. Where does he go?--->Actually, it is worth discussing blue cars and maybe blue cars could be considered a blue issue or a bluish issue, but this must be done without erasing John.
(the other side of the page)
Intersectionality is sometimes invoked as a weapon and marginalized people are criticized for not having enough marginalized identities. In the most aggressive forms of this, the actual top-level oppressors disappear. "Gay white men," "disabled white men," etc., are responsible for the problems. "Gayness" or "disabledness" can't be discussed as individual factors. Sometimes people start to imply that you can't have real oppression unless you have more than one kind. To me this is a misuse of intersectionality and privilege/oppression thinking, which should be mathematical.
OPTION C--OPPRESSION MATH
Identities are facts. They're constructed, but presently they are real.
John has X marginalized identity. No matter how many other marginalized identities and/or privilege identities he has in addition to X, he has X.
JOHN<--------X oppression Say John also has Y marginalized identity. JOHN<--------X oppression JOHN<--------Y oppression is what we know for sure, and in various complicated ways, something like this is probably happening: X oppression-------->JOHN<--------Y oppression JOHN<--------X oppression + Y oppression JOHN<--------(X oppression)(Y oppression) JOHN<--------X oppression^(Y oppression) JOHN<--------(X oppression + Y oppression)(X oppression) The possibilities are endless. This was better as a drawing, by the way. But anyway, this is all we know about John.
To me, intersectionality means that we don't take X to mean anything else but X because there are so many other factors that work on an individual. X is not a prescription, it's a fact.
OTHER NOTES
1. Obviously when I talk about the misuse of intersectionality (which actually isn't intersectionality at all)...well, if you think I'm insulting you or people like you, then I can't stop you. The misuse of intersectionality is like Oppression Olympics in that sometimes people really are engaging in it, and other times they're being accused of engaging in it by someone who is just an asshole.
2. What is the definition of a marginalized identity? Some axes that obviously count, like class and disability, are often ignored or even scoffed at.
2a. What about factors that interact with a marginalized identity, that can't really be called a marginalized identity, such as certain life experiences or subcultures? These things start to feel kind of political and intersectional when they mean that someone feels locked out of their identity because of them. I think these things are very important, but what do you call them?
PRESCRIPTIVE IDENTITIES (this was a flow chart)
A. Identities which are based in transcending stigma.--->Not everyone can or wants to transcend.
B. Identities which are based on denying the reality of stigma, embracing stigma, and/or denying categories.--->Stigma is real. Not everyone can afford the consequences of embracing it. Some people need or want to think about their lives in terms of categories so they can understand the ways they are disadvantaged and try to function.--->B ultimately becomes a denial of difference and privilege
So, A and B, as descriptors for minority groups, fail because they make assumptions about members of the group. An A or B identity may pretend to mean one thing, but actually it means many unspoken things. More than one fact must be true for a person to belong.*
*"People whose favorite color is blue" comes to be synonymous with "people who have a blue car." John's favorite color is blue, but he doesn't have a car. Where does he go?--->Actually, it is worth discussing blue cars and maybe blue cars could be considered a blue issue or a bluish issue, but this must be done without erasing John.
(the other side of the page)
Intersectionality is sometimes invoked as a weapon and marginalized people are criticized for not having enough marginalized identities. In the most aggressive forms of this, the actual top-level oppressors disappear. "Gay white men," "disabled white men," etc., are responsible for the problems. "Gayness" or "disabledness" can't be discussed as individual factors. Sometimes people start to imply that you can't have real oppression unless you have more than one kind. To me this is a misuse of intersectionality and privilege/oppression thinking, which should be mathematical.
OPTION C--OPPRESSION MATH
Identities are facts. They're constructed, but presently they are real.
John has X marginalized identity. No matter how many other marginalized identities and/or privilege identities he has in addition to X, he has X.
JOHN<--------X oppression Say John also has Y marginalized identity. JOHN<--------X oppression JOHN<--------Y oppression is what we know for sure, and in various complicated ways, something like this is probably happening: X oppression-------->JOHN<--------Y oppression JOHN<--------X oppression + Y oppression JOHN<--------(X oppression)(Y oppression) JOHN<--------X oppression^(Y oppression) JOHN<--------(X oppression + Y oppression)(X oppression) The possibilities are endless. This was better as a drawing, by the way. But anyway, this is all we know about John.
To me, intersectionality means that we don't take X to mean anything else but X because there are so many other factors that work on an individual. X is not a prescription, it's a fact.
OTHER NOTES
1. Obviously when I talk about the misuse of intersectionality (which actually isn't intersectionality at all)...well, if you think I'm insulting you or people like you, then I can't stop you. The misuse of intersectionality is like Oppression Olympics in that sometimes people really are engaging in it, and other times they're being accused of engaging in it by someone who is just an asshole.
2. What is the definition of a marginalized identity? Some axes that obviously count, like class and disability, are often ignored or even scoffed at.
2a. What about factors that interact with a marginalized identity, that can't really be called a marginalized identity, such as certain life experiences or subcultures? These things start to feel kind of political and intersectional when they mean that someone feels locked out of their identity because of them. I think these things are very important, but what do you call them?
so, I'll come out and say this: Christianity/disability = OTP for life.
Maybe I mean religion in general but I'm not going to assume I know other religions enough to make that judgment.
I know that a lot of disabled people are really offended by the idea that being around disabled people is a big spiritual lesson. But I feel that it is for me, and that being disabled is a big spiritual lesson, also.
So much of what we think we want and need, or need to be, are just things we've constructed. So when we can't do the things we think we must do, then we have to see that all of this is not objectively real. In the most terrible periods of my life, my eyes have had to unfocus to survive and it becomes all about color, sleep, crushes, laughing for a minute, the sky, finding something on the ground, really small pieces of Love.
As I have said, I can often hold on to what I'm told I need to be, which is I guess um--what an embarrassing phrase--my blessing and my curse, and I guess the curse of the "hf," the "barely disabled," the "invisibly disabled," blah blah blah. I don't have to let go of all of it although of course this puts me into a constant state of panic because holding on is almost impossible for me and I can feel myself almost losing it, and maybe I'll never let myself lose it, I don't know, or maybe I'll find a life that I can actually live.
I am glad that I have gotten to know people with severe and profound disabilities because I have learned that people who cannot do and/or have some of the things that are supposed to be mandatory are still people, and their life is still life; and then I see what's actually real, which is, you know, real life, not "success." So yeah. I have learned spiritual things from being around disabled people. Which I guess I'm not supposed to say. But it's difficult to avoid.
Something about being queer and disabled (and specifically Autistic) and Christian and semi-synesthesiac and whatever else is just that really brief connections and experiences always continue to exist for me after they're gone. I don't see there as being an end other than Love--many of the "means" are really that end, and the ends are just means to throw us into Love and sometimes tear us away. So I can keep my pieces of Love with me because I can always see them in time even when they are gone.
One of my classes in the UK was taught by a professor who kept making fun of Christianity and religion in general. She said, "You never see people wearing a gold electric chair around their neck."
Well, the thing about me is, of course I would. That's why I'm Christian. I know perfectly well that's what it is. And maybe being disabled has put me in this kind of twee-pop place of wanting to say, "Fuck yeah failure." Yes? Maybe?
Maybe I mean religion in general but I'm not going to assume I know other religions enough to make that judgment.
I know that a lot of disabled people are really offended by the idea that being around disabled people is a big spiritual lesson. But I feel that it is for me, and that being disabled is a big spiritual lesson, also.
So much of what we think we want and need, or need to be, are just things we've constructed. So when we can't do the things we think we must do, then we have to see that all of this is not objectively real. In the most terrible periods of my life, my eyes have had to unfocus to survive and it becomes all about color, sleep, crushes, laughing for a minute, the sky, finding something on the ground, really small pieces of Love.
As I have said, I can often hold on to what I'm told I need to be, which is I guess um--what an embarrassing phrase--my blessing and my curse, and I guess the curse of the "hf," the "barely disabled," the "invisibly disabled," blah blah blah. I don't have to let go of all of it although of course this puts me into a constant state of panic because holding on is almost impossible for me and I can feel myself almost losing it, and maybe I'll never let myself lose it, I don't know, or maybe I'll find a life that I can actually live.
I am glad that I have gotten to know people with severe and profound disabilities because I have learned that people who cannot do and/or have some of the things that are supposed to be mandatory are still people, and their life is still life; and then I see what's actually real, which is, you know, real life, not "success." So yeah. I have learned spiritual things from being around disabled people. Which I guess I'm not supposed to say. But it's difficult to avoid.
Something about being queer and disabled (and specifically Autistic) and Christian and semi-synesthesiac and whatever else is just that really brief connections and experiences always continue to exist for me after they're gone. I don't see there as being an end other than Love--many of the "means" are really that end, and the ends are just means to throw us into Love and sometimes tear us away. So I can keep my pieces of Love with me because I can always see them in time even when they are gone.
One of my classes in the UK was taught by a professor who kept making fun of Christianity and religion in general. She said, "You never see people wearing a gold electric chair around their neck."
Well, the thing about me is, of course I would. That's why I'm Christian. I know perfectly well that's what it is. And maybe being disabled has put me in this kind of twee-pop place of wanting to say, "Fuck yeah failure." Yes? Maybe?
16 March, 2011
sorry this is rushed, but it's sort of urgent
There is a "wandering" code under consideration to be in the new International Classification of Diseases (ICD-9-CM). "Wandering" would be a diagnosis that could be given to people with developmental disabilities. The Autistic Self-Advocacy Network has a petition against the wandering code because it's likely to lead to the abuse of people with DDs. It's really important to sign the petition because there is an opposing petition that also has a lot of signatures, so if you would like to sign the petition it is here:
Anti-Wandering Code Petition
I don't always like to sign petitions if I don't know much about the issue, so I'll try to explain why I am against the wandering code if you are not sure.
I know that there are people with DDs, especially kids with autism, who do dangerous things like running into the street; and presumably this is what the diagnosis is intended to address. However, some problems with making it a medical diagnosis are:
1. It pathologizes actions that can often be better looked at as expressions of what someone wants or needs. If someone "wanders" dangerously, it is better for their family and staff to figure out why the person is doing that and try to a)address emotional and communication issues that may be leading to the behavior, and b)teach the person how to be safe, rather than treating them as "a wanderer." It's already way too common to write off DD people's actions as "just part of their disability" instead of seeing that they may be trying to express something.
2. The diagnosis is very vague, and it can and certainly will be applied to people whose behavior does not fit the most extreme examples. In support of the wandering code, the Centers for Disease Control and Prevention quotes a survey saying that 92% of kids with autism wander from safe places, according to their parents. I can't imagine what incredibly stretchy and general definition of wandering could possibly allow this to be true--I've known a lot of kids with severe autism (which I assume is what they're referring to), and while I know some who are very impulsive and not aware of where they are going, I don't think that this is a dangerous medical problem for most of them. I also know a lot of kids with severe autism who could not be considered to "wander" any more than non-disabled kids.
3. When someone gets a diagnosis that labels one of their actions as being dangerous and a medical problem, that makes it easier for people to control them in ways that are not ethical; for example, writing restraints into a child's IEP so they can be legally used in school, or making someone live in an institution. This is especially the case when the action that is being labeled dangerous is something that a)is very vaguely defined, and b)is something that a person may do when they are in an abusive situation. It's really scary to think that a person may be, for example, leaving their group home without permission because they are afraid, or running into a dangerous area because they feel depressed and hopeless; and because they have a wandering diagnosis, these actions will be seen not as actions, but as part of their disability and something to be corrected by keeping them under tighter control.
Wandering is not a diagnosis yet, and hopefully won't ever be, but I have seen something similar happen with diagnoses of "behavioral problems," "emotional disturbance," or "emotional behavioral disorder" (a lot of different terms are used but they mean basically the same thing). Yes, some people with and without DDs have serious behavioral problems. But as a staff person, I've met a lot of people with these diagnoses who were not any more violent or aggressive than anyone else. However, something many of them had in common was being agreeable and compliant to the point of having trouble expressing how they felt or what they actually wanted. I can't help but feel that this is a natural result of the way someone is treated when they have a label that encourages staff to see everything the person does as a symptom of a disease.
If you didn't sign the petition before, but would like to now, here it is again:
Anti-Wandering Code Petition
You can also email Donna Pickett who is the CDC's co-chair of the Coordination and Maintenance Committee for the new International Classification of Diseases. Her email is dfp4@cdc.gov and she is collecting public comment about the ICD-9-CM.
The ASAN Action Alert about the wandering code has more information about it.
Anti-Wandering Code Petition
I don't always like to sign petitions if I don't know much about the issue, so I'll try to explain why I am against the wandering code if you are not sure.
I know that there are people with DDs, especially kids with autism, who do dangerous things like running into the street; and presumably this is what the diagnosis is intended to address. However, some problems with making it a medical diagnosis are:
1. It pathologizes actions that can often be better looked at as expressions of what someone wants or needs. If someone "wanders" dangerously, it is better for their family and staff to figure out why the person is doing that and try to a)address emotional and communication issues that may be leading to the behavior, and b)teach the person how to be safe, rather than treating them as "a wanderer." It's already way too common to write off DD people's actions as "just part of their disability" instead of seeing that they may be trying to express something.
2. The diagnosis is very vague, and it can and certainly will be applied to people whose behavior does not fit the most extreme examples. In support of the wandering code, the Centers for Disease Control and Prevention quotes a survey saying that 92% of kids with autism wander from safe places, according to their parents. I can't imagine what incredibly stretchy and general definition of wandering could possibly allow this to be true--I've known a lot of kids with severe autism (which I assume is what they're referring to), and while I know some who are very impulsive and not aware of where they are going, I don't think that this is a dangerous medical problem for most of them. I also know a lot of kids with severe autism who could not be considered to "wander" any more than non-disabled kids.
3. When someone gets a diagnosis that labels one of their actions as being dangerous and a medical problem, that makes it easier for people to control them in ways that are not ethical; for example, writing restraints into a child's IEP so they can be legally used in school, or making someone live in an institution. This is especially the case when the action that is being labeled dangerous is something that a)is very vaguely defined, and b)is something that a person may do when they are in an abusive situation. It's really scary to think that a person may be, for example, leaving their group home without permission because they are afraid, or running into a dangerous area because they feel depressed and hopeless; and because they have a wandering diagnosis, these actions will be seen not as actions, but as part of their disability and something to be corrected by keeping them under tighter control.
Wandering is not a diagnosis yet, and hopefully won't ever be, but I have seen something similar happen with diagnoses of "behavioral problems," "emotional disturbance," or "emotional behavioral disorder" (a lot of different terms are used but they mean basically the same thing). Yes, some people with and without DDs have serious behavioral problems. But as a staff person, I've met a lot of people with these diagnoses who were not any more violent or aggressive than anyone else. However, something many of them had in common was being agreeable and compliant to the point of having trouble expressing how they felt or what they actually wanted. I can't help but feel that this is a natural result of the way someone is treated when they have a label that encourages staff to see everything the person does as a symptom of a disease.
If you didn't sign the petition before, but would like to now, here it is again:
Anti-Wandering Code Petition
You can also email Donna Pickett who is the CDC's co-chair of the Coordination and Maintenance Committee for the new International Classification of Diseases. Her email is dfp4@cdc.gov and she is collecting public comment about the ICD-9-CM.
The ASAN Action Alert about the wandering code has more information about it.
13 March, 2011
Autistic Passing Project survey
These are my 4 surveys for the Autistic Passing Project which is an art project I'm doing as a Creative Writing practicum in school. My goal is to collect writing from Autistic people about their experiences of camouflaging the fact that they are Autistic, or their attempts to do so; I will then sample pieces of the writing to make a textual and visual collage portraying the Autistic Passing experience.
APP 1: Background Diagnosis and Identity, Beginnings, Mechanics of Passing
APP 2: Intersectionality, Other Kinds of Difference, Passing in Different Environments
APP 3: Drawbacks of Passing, General Questions, Advantages of Passing
APP 4: Autistic Identification
To explain why I'm doing this: I'm Autistic, of course, and passing or not passing has been a huge theme in my life although I've only understood recently how huge it has been. Appearing more like a non-Autistic person is often presented to a young Autistic person by parents, teachers, doctors, and peers as being similar to eating your vegetables--an inherently positive act. There is very little acknowledgment that meeting these goals could be seen as lying or hiding, or could feel artificial to the Autistic person. Often professionals believe that passing as non-Autistic is the same as success; this is my major motivation for doing a survey, because this belief has not been backed up by Autistic people’s testimony.
If you are supportive of my project, please post about this on your own blog or anywhere else so I can get more participants in my survey.
I'd super very much appreciate it if, upon noticing any technical problems in the survey (for example, if the URL at the end of Part 1 is not the URL of Part 2), you would inform of this through an email, comment, tumblr reblog, etc.
APP 1: Background Diagnosis and Identity, Beginnings, Mechanics of Passing
APP 2: Intersectionality, Other Kinds of Difference, Passing in Different Environments
APP 3: Drawbacks of Passing, General Questions, Advantages of Passing
APP 4: Autistic Identification
To explain why I'm doing this: I'm Autistic, of course, and passing or not passing has been a huge theme in my life although I've only understood recently how huge it has been. Appearing more like a non-Autistic person is often presented to a young Autistic person by parents, teachers, doctors, and peers as being similar to eating your vegetables--an inherently positive act. There is very little acknowledgment that meeting these goals could be seen as lying or hiding, or could feel artificial to the Autistic person. Often professionals believe that passing as non-Autistic is the same as success; this is my major motivation for doing a survey, because this belief has not been backed up by Autistic people’s testimony.
If you are supportive of my project, please post about this on your own blog or anywhere else so I can get more participants in my survey.
I'd super very much appreciate it if, upon noticing any technical problems in the survey (for example, if the URL at the end of Part 1 is not the URL of Part 2), you would inform of this through an email, comment, tumblr reblog, etc.
Autistic Passing explanation
The purpose of this survey is to learn about the experience of Autistic people who are passing or trying to pass, or who have previously passed or tried to pass. Wikipedia describes passing as, “the ability of a person to be regarded as a member of social groups other than his or her own, such as a different race, ethnicity, social class, gender, and/or disability status, generally with the purpose of gaining social acceptance.”
Trying to pass as non-Autistic can be a little different from trying to pass as a different race or class. Appearing more like a non-Autistic person is often presented to a young Autistic person by parents, teachers, doctors, and peers as being similar to getting good grades or exercising--an inherently positive accomplishment. There is very little acknowledgment that meeting these goals could be seen as lying or hiding, or could feel artificial to the Autistic person. Often professionals believe that passing as non-Autistic is the same as success; this is my major motivation for doing a survey, because this belief has not been backed up by Autistic people’s testimony.
This survey asks questions about your experience passing, feelings about autism, and your general emotional state. A lot of the questions are very long because I wanted to give you a lot of suggestions of what to talk about. If you want to skip a question, or you can only write a very short answer, that’s fine. If you have a lot to say, that's fine too. I am trying to get an impression of people’s experiences and feelings, which I will use for an art project. It’s not a scientific study, so it isn’t necessary that everyone reacts to the questions in the same way.
Trying to pass as non-Autistic can be a little different from trying to pass as a different race or class. Appearing more like a non-Autistic person is often presented to a young Autistic person by parents, teachers, doctors, and peers as being similar to getting good grades or exercising--an inherently positive accomplishment. There is very little acknowledgment that meeting these goals could be seen as lying or hiding, or could feel artificial to the Autistic person. Often professionals believe that passing as non-Autistic is the same as success; this is my major motivation for doing a survey, because this belief has not been backed up by Autistic people’s testimony.
This survey asks questions about your experience passing, feelings about autism, and your general emotional state. A lot of the questions are very long because I wanted to give you a lot of suggestions of what to talk about. If you want to skip a question, or you can only write a very short answer, that’s fine. If you have a lot to say, that's fine too. I am trying to get an impression of people’s experiences and feelings, which I will use for an art project. It’s not a scientific study, so it isn’t necessary that everyone reacts to the questions in the same way.
07 March, 2011
how to find out if your students are disabled!! by AWV, age 8
Sorry to brag, but you know. It happens. I linked my disability services post/video on tumblr and it got 26 notes. Then someone else posted it on tumblr, and their post got 73 notes. Then someone else posted it and their post got 67 notes. That's 166 notes! Now I get to feel slightly accomplished despite sucking at a bunch of other stuff.
First, an epigraph from my dear friend Lion Face: "You make a bad bitch. Please don't be like that."
So, yeah, I'm being kind of bitchy about this and you should go look at my tumblr and read her post so you can make your own judgment--but this disabled professor reblogged it and gave me a big talk about how PROFESSORS ARE PEOPLE TOO and I SHOULDN'T BLAME PROFESSORS (which I wasn't doing, I'm pretty sure the video was about how disability services suck and professors should be aware of that, not about how professors suck) and DON'T I KNOW THAT PROFESSORS ARE SOMETIMES DISABLED TOO. This last one really throws me for a loop because I think it's implying that I should be practicing ~disability solidarity~ and not criticizing ableist, able-normative, and inaccessible behavior because it might be coming from a disabled person! I don't get this, especially since I also sometimes work jobs where I am meant to be supporting disabled people, and I do not feel that my disability in any way exempts me from being open to criticism and trying to figure out if I'm doing a good job.
Anyway, one question this person asked was, even if it's hard for students to make the decision to come and talk about being disabled and ask for accommodations, how else could the professor possibly know the student is disabled otherwise? HOW IN THE WORLD COULD ANYONE EVER FIND THIS OUT?
Well...
~how to find out if your students are disabled!!!11 (and if they need accommodations) (and generally make your class closer to universal design)
1. On the first day of class, hand out little index cards or forms asking questions about the students. A lot of professors already do this when there's a limit on class size and they want to decide who is best suited for the class, or for other reasons. (My Latin professor would terrifyingly shuffle her index cards and use them to call on people. We were reading Boethius, so she called it the Wheel of Fortune.)
2. Have one of the questions be more or less, "Are you disabled?" but ask this in a very open way, possibly with a joke involved, so no one feels that they have to answer the question "No" because their disability isn't ~serious~ enough or they don't have documentation.
3. On the syllabus, write the usual thing about how disabled students can contact the disability services office if they need accommodations. But also say that in some cases you are open to communicating with a student directly, and doing things differently with them if it seems fair to do so. And say that if an aspect of the way the class is set up seems really inaccessible, you encourage students to contact you about this; you can't promise that you will change the structure of the class, but you will consider it if there are no drawbacks. After all, in some cases universal design benefits everyone.
4. In #2 and #3, make it possible for people to state exactly what they have trouble with, instead of stating their diagnosis if they are uncomfortable.
Something pretty obvious is that no one likes to go talk to a professor about being disabled and needing an accommodation, especially because you often have no idea how the professor feels about disability or will react to your disability. (This particular reblogging professor writes on her syllabus that she has a disability, which I think is great--but in general, students usually don't know what the professor's experience with disability is.) And also because asking for an accommodation may lead to the professor thinking you're lazy and having a low opinion of you.
So...if the professor normalizes the idea of disability and shows that they are comfortable with disability and won't just tolerate but will accept a conversation about accessibility, and makes it possible to disclose disability casually and without speaking...then they will know when students are disabled and when students would benefit from accommodations. Without students having to come and tell them. I'm not a professor so maybe I'm wrong, but would this method really be so difficult?
First, an epigraph from my dear friend Lion Face: "You make a bad bitch. Please don't be like that."
So, yeah, I'm being kind of bitchy about this and you should go look at my tumblr and read her post so you can make your own judgment--but this disabled professor reblogged it and gave me a big talk about how PROFESSORS ARE PEOPLE TOO and I SHOULDN'T BLAME PROFESSORS (which I wasn't doing, I'm pretty sure the video was about how disability services suck and professors should be aware of that, not about how professors suck) and DON'T I KNOW THAT PROFESSORS ARE SOMETIMES DISABLED TOO. This last one really throws me for a loop because I think it's implying that I should be practicing ~disability solidarity~ and not criticizing ableist, able-normative, and inaccessible behavior because it might be coming from a disabled person! I don't get this, especially since I also sometimes work jobs where I am meant to be supporting disabled people, and I do not feel that my disability in any way exempts me from being open to criticism and trying to figure out if I'm doing a good job.
Anyway, one question this person asked was, even if it's hard for students to make the decision to come and talk about being disabled and ask for accommodations, how else could the professor possibly know the student is disabled otherwise? HOW IN THE WORLD COULD ANYONE EVER FIND THIS OUT?
Well...
~how to find out if your students are disabled!!!11 (and if they need accommodations) (and generally make your class closer to universal design)
1. On the first day of class, hand out little index cards or forms asking questions about the students. A lot of professors already do this when there's a limit on class size and they want to decide who is best suited for the class, or for other reasons. (My Latin professor would terrifyingly shuffle her index cards and use them to call on people. We were reading Boethius, so she called it the Wheel of Fortune.)
2. Have one of the questions be more or less, "Are you disabled?" but ask this in a very open way, possibly with a joke involved, so no one feels that they have to answer the question "No" because their disability isn't ~serious~ enough or they don't have documentation.
3. On the syllabus, write the usual thing about how disabled students can contact the disability services office if they need accommodations. But also say that in some cases you are open to communicating with a student directly, and doing things differently with them if it seems fair to do so. And say that if an aspect of the way the class is set up seems really inaccessible, you encourage students to contact you about this; you can't promise that you will change the structure of the class, but you will consider it if there are no drawbacks. After all, in some cases universal design benefits everyone.
4. In #2 and #3, make it possible for people to state exactly what they have trouble with, instead of stating their diagnosis if they are uncomfortable.
Something pretty obvious is that no one likes to go talk to a professor about being disabled and needing an accommodation, especially because you often have no idea how the professor feels about disability or will react to your disability. (This particular reblogging professor writes on her syllabus that she has a disability, which I think is great--but in general, students usually don't know what the professor's experience with disability is.) And also because asking for an accommodation may lead to the professor thinking you're lazy and having a low opinion of you.
So...if the professor normalizes the idea of disability and shows that they are comfortable with disability and won't just tolerate but will accept a conversation about accessibility, and makes it possible to disclose disability casually and without speaking...then they will know when students are disabled and when students would benefit from accommodations. Without students having to come and tell them. I'm not a professor so maybe I'm wrong, but would this method really be so difficult?
04 March, 2011
disability services are not accessible!
Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."
Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...
So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.
So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.
Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.
So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.
So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.
Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.
But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.
So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."
So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.
"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.
But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.
So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.
For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.
Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.
(break)
Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.
Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.
Um, yeah, shit, what was my third thing?
I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.
Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.
So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.
Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.
Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.
What else did I have to say? Let's find out.
Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.
So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?
Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.
Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.
Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.
Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.
(break)
Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."
So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.
Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.
And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.
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.
01 March, 2011
I was going to make a post saying that I'm trying to give up this blog for Lent again, but I know that it's ridiculous to say this is about Lent, because giving up this blog is really the opposite of what I should be doing in terms of God. Out of my usual perverse avoidance of the medical model, I'm going to avoid saying that disability and anti-ableism is my special interest, and say that it's the thing I am called to right now.
When I am called to something it's the thing my mind always returns to. It becomes very hard to focus on other things. This is obviously problematic because I am in school.
Last time I went to church the sermon was about the lillies of the field and the pastor, I thought, impressively TMIed the congregation by saying that his marriage had fallen apart but that God was there to look after him. Unfortunately, I guess I do not feel this way. I cannot feel safe in God's hands, because if I do not graduate from college that would not be okay. I know the way my mind is going, it's very difficult to do anything. I try to avoid writing here when I feel called to do so, because I know that it will keep me from doing other things. So I walk around with notebooks full of very long pieces of writing about exactly the kind of thing I write about here, because even when I don't allow myself to actually write here, it is always the core of me. I really don't know what to do with this. I know that the core of me needs to be, if nothing else, my independent fiction project. But it's hard for me to be as interested in that project as I am in all of this.
Sorry to go on about this here.
When I really think about it, I know that graduating doesn't really matter, not just in the grand scheme of things, but in the specific. I don't even have plans for my life that heavily depend upon having a college education. At the same time, I can't help but feel that if I didn't graduate, it would not be okay. I would not be okay if I couldn't succeed in this particular way.
But I wake up and do nothing because there is so much I am not called to do and it's so hard to move toward it and I get trapped in nothingness, not even writing here, because everything starts moving too slow and too fast at the same time. I don't know if this is making sense. Basically, I know on the one hand I should write more because I know not as many people are reading this any more and I also feel strongly that it's the most important thing I do even though in the eyes of a lot of people it wouldn't be important at all--but the people I most care about I guess are the people to whom this kind of writing is important. I feel like I'm throwing something away here. But I know I have to leave, so I can do what I think is okay instead of what I think is right. And yes I know this is a very dramatic way to say, "I'm trying to write in my blog less so I can focus on school more."
But I have a slow nature and this kind of transferring my mind from one thing to another feels really miserable. Especially because right now I feel so confused about the right thing to do and I feel like I'm trading in a sense of purpose for colorlessness.
When I am called to something it's the thing my mind always returns to. It becomes very hard to focus on other things. This is obviously problematic because I am in school.
Last time I went to church the sermon was about the lillies of the field and the pastor, I thought, impressively TMIed the congregation by saying that his marriage had fallen apart but that God was there to look after him. Unfortunately, I guess I do not feel this way. I cannot feel safe in God's hands, because if I do not graduate from college that would not be okay. I know the way my mind is going, it's very difficult to do anything. I try to avoid writing here when I feel called to do so, because I know that it will keep me from doing other things. So I walk around with notebooks full of very long pieces of writing about exactly the kind of thing I write about here, because even when I don't allow myself to actually write here, it is always the core of me. I really don't know what to do with this. I know that the core of me needs to be, if nothing else, my independent fiction project. But it's hard for me to be as interested in that project as I am in all of this.
Sorry to go on about this here.
When I really think about it, I know that graduating doesn't really matter, not just in the grand scheme of things, but in the specific. I don't even have plans for my life that heavily depend upon having a college education. At the same time, I can't help but feel that if I didn't graduate, it would not be okay. I would not be okay if I couldn't succeed in this particular way.
But I wake up and do nothing because there is so much I am not called to do and it's so hard to move toward it and I get trapped in nothingness, not even writing here, because everything starts moving too slow and too fast at the same time. I don't know if this is making sense. Basically, I know on the one hand I should write more because I know not as many people are reading this any more and I also feel strongly that it's the most important thing I do even though in the eyes of a lot of people it wouldn't be important at all--but the people I most care about I guess are the people to whom this kind of writing is important. I feel like I'm throwing something away here. But I know I have to leave, so I can do what I think is okay instead of what I think is right. And yes I know this is a very dramatic way to say, "I'm trying to write in my blog less so I can focus on school more."
But I have a slow nature and this kind of transferring my mind from one thing to another feels really miserable. Especially because right now I feel so confused about the right thing to do and I feel like I'm trading in a sense of purpose for colorlessness.
Confession
I'm twenty-two. A million years ago, when I was twenty, I wrote that I was like a mosaic that was always working on itself to make its squares smaller and smaller so the picture could be more detailed. I guess in this metaphor everyone else was like some really high-definition photograph and as much as I worked I couldn't get to their level of complexity because I was made by trial and error instead of nature. There was always something about me that wasn't as fluid or as soft or sharp.
If you're wondering what kind of human being would say something like that about themselves, I actually don't know because I am not like that anymore and it really does feel like a million years ago.
I have bad brains, probably the worst ever. Sometimes my bad brains shoot out horrible things like a geyser of shit and other times they just stall and wait around in the same circles. Most of the time the shit geyser and the stalling and waiting just combine themselves and feed off each other. It's pretty impressive that I manage to get anything done around here. I mean, frequently I don't, and I would never say that my bad brains are a thing of beauty and a joy forever, but I have come to some conclusions about them.
They are my brains, so I love them as much as I can.
I am not worth less than people who don't have bad brains. I'm also not better than people who are less able to get around their bad brains than I am.
I'm not obliged to trick other people into thinking that I don't have bad brains.
I love my bad brains because they are the apparatus I experience Creation through right now.
Back when I was a mosaic and not an unrepentant bad brains, I never knew how horrible things would be when I started experiencing them for real. But I didn't know how safe I would feel and how much I would love people, either.
If you're wondering what kind of human being would say something like that about themselves, I actually don't know because I am not like that anymore and it really does feel like a million years ago.
I have bad brains, probably the worst ever. Sometimes my bad brains shoot out horrible things like a geyser of shit and other times they just stall and wait around in the same circles. Most of the time the shit geyser and the stalling and waiting just combine themselves and feed off each other. It's pretty impressive that I manage to get anything done around here. I mean, frequently I don't, and I would never say that my bad brains are a thing of beauty and a joy forever, but I have come to some conclusions about them.
They are my brains, so I love them as much as I can.
I am not worth less than people who don't have bad brains. I'm also not better than people who are less able to get around their bad brains than I am.
I'm not obliged to trick other people into thinking that I don't have bad brains.
I love my bad brains because they are the apparatus I experience Creation through right now.
Back when I was a mosaic and not an unrepentant bad brains, I never knew how horrible things would be when I started experiencing them for real. But I didn't know how safe I would feel and how much I would love people, either.
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