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?
30 April, 2011
29 April, 2011
hurt power and disability 2; or, I HAVE A LOT OF FEELINGS
I always feel like I'm really hard on my parents here when they're pretty great people and also overpathologizing your kids is such a stereotypical rich person thing, I can't even. But I've written a lot about how I think it's super important for disabled people to be able to make bad decisions without that being seen (especially in the case of people who are receiving services or "dependent" on someone) as a reason that they shouldn't be allowed to make decisions or a reason that their self-expression and decisions should be seen as "part of their disability" in a way that means those things should be suppressed or ignored.
And I feel that is kind of how I was raised; things that in retrospect seem pretty innocent, or at the most things that I would try to stop my kid from doing but would see as funny and not that big a deal, began to feel like ammunition against me and evidence that I a)was someone to be worried about and b)shouldn't be allowed to make my own decisions. Which does a lot to explain the Supercrip Mongoose you see before you, because I feel that if I need support, I won't be able to have anything.
Two entire humans told me they liked and related to the part of my s/m post that talked about submission as a way to experience parts of yourself that you dislike and/or avoid. I was pleased because that was the part that I totally cribbed from other people and mumbled through to avoid saying anything dramatic and getting it wrong. It seems like dominance would be the opposite, i.e. experiencing power that you don't have in real life and sweeping weakness under the rug, but in fact I feel like it's exactly the same failure embrace just in a different way. After all I do stuff with people who know me so it's not like anyone's under the impression I have super good brains and am really tough.
What happens is not exactly a good thing because it means I really overattach to people I do stuff with (and also develop the biggest savior complex in the known universe, which is gross), but for someone to relate to me in that way and vice versa feels like a really radical acceptance of me as a whole person, which is a huge departure from the tendency to either look at what someone does and deny their disability, or look at what someone doesn't do (or does wrong) and say that that's all of them and means something about how they should be treated. For someone to think that it's okay for me to occupy a certain role and make certain decisions, when they know I have all these cracks, is an acknowledgment of The Elevators in me.
And I feel that is kind of how I was raised; things that in retrospect seem pretty innocent, or at the most things that I would try to stop my kid from doing but would see as funny and not that big a deal, began to feel like ammunition against me and evidence that I a)was someone to be worried about and b)shouldn't be allowed to make my own decisions. Which does a lot to explain the Supercrip Mongoose you see before you, because I feel that if I need support, I won't be able to have anything.
Two entire humans told me they liked and related to the part of my s/m post that talked about submission as a way to experience parts of yourself that you dislike and/or avoid. I was pleased because that was the part that I totally cribbed from other people and mumbled through to avoid saying anything dramatic and getting it wrong. It seems like dominance would be the opposite, i.e. experiencing power that you don't have in real life and sweeping weakness under the rug, but in fact I feel like it's exactly the same failure embrace just in a different way. After all I do stuff with people who know me so it's not like anyone's under the impression I have super good brains and am really tough.
What happens is not exactly a good thing because it means I really overattach to people I do stuff with (and also develop the biggest savior complex in the known universe, which is gross), but for someone to relate to me in that way and vice versa feels like a really radical acceptance of me as a whole person, which is a huge departure from the tendency to either look at what someone does and deny their disability, or look at what someone doesn't do (or does wrong) and say that that's all of them and means something about how they should be treated. For someone to think that it's okay for me to occupy a certain role and make certain decisions, when they know I have all these cracks, is an acknowledgment of The Elevators in me.
27 April, 2011
Hi everyone. My name is autism and some mood/anxiety stuff but a lot of people just call me autism. I’m 22 and about to graduate from college. There’s not really much to say about me--I like Skins, I move very quickly, I’m not a great disability to go to church with. But overall I’m just like any other disability and I want the same things.
Well, except that I happen to have a person. My person is called an Amanda Forest Vivian Spectrum Disorder, or AFVSD for short. I was diagnosed with AFVSD when I was nine and she has caused me to have problems with social communication and being gayyy. But seriously guys, that’s between her and me. My AFVSD is none of your business--I’m first and foremost autism, and I want to be treated that way.
The most difficult disabilities for me to be friends with are the ones who don’t respect me as a disability and just treat me like a PERSON. They don’t even see me, just a stereotype of what a person is. They’re so busy looking at my Amanda Forest Vivian Spectrum Disorder that they don’t realize when something is too loud for me, or when I’m really not feeling good and might end up werewolf-attacking AFVSD. Then they act all surprised, but if they just treated me like autism instead of "Amanda," I would be able to achieve more of the things that I want.
No matter how different I may seem with this giant lesbian tragedy attached to my face, please remember that I’m a disability first and a person second--so please use disability-first language to show that you respect me as a whole disability and aren’t obsessed with my person. It’s the LAW.
Yours in disabilitycapades,
autism and some mood/anxiety stuff, ES-FUCKING-SQUIRE
P.S. My AFVSD continues to prefer person-first language and isn't saying otherwise, but neither of us can handle nothings-with-persons thinking they have a right to actually criticize and correct disabilities for not using PFL, especially when they complete ignore actually important things that disabilities are saying about anti-ableism in favor of bitching about a LANGUAGE USAGE THAT SOME OTHER NWAP TOLD THEM TO USE. FOR FUCK'S SAKE.
Well, except that I happen to have a person. My person is called an Amanda Forest Vivian Spectrum Disorder, or AFVSD for short. I was diagnosed with AFVSD when I was nine and she has caused me to have problems with social communication and being gayyy. But seriously guys, that’s between her and me. My AFVSD is none of your business--I’m first and foremost autism, and I want to be treated that way.
The most difficult disabilities for me to be friends with are the ones who don’t respect me as a disability and just treat me like a PERSON. They don’t even see me, just a stereotype of what a person is. They’re so busy looking at my Amanda Forest Vivian Spectrum Disorder that they don’t realize when something is too loud for me, or when I’m really not feeling good and might end up werewolf-attacking AFVSD. Then they act all surprised, but if they just treated me like autism instead of "Amanda," I would be able to achieve more of the things that I want.
No matter how different I may seem with this giant lesbian tragedy attached to my face, please remember that I’m a disability first and a person second--so please use disability-first language to show that you respect me as a whole disability and aren’t obsessed with my person. It’s the LAW.
Yours in disabilitycapades,
autism and some mood/anxiety stuff, ES-FUCKING-SQUIRE
P.S. My AFVSD continues to prefer person-first language and isn't saying otherwise, but neither of us can handle nothings-with-persons thinking they have a right to actually criticize and correct disabilities for not using PFL, especially when they complete ignore actually important things that disabilities are saying about anti-ableism in favor of bitching about a LANGUAGE USAGE THAT SOME OTHER NWAP TOLD THEM TO USE. FOR FUCK'S SAKE.
24 April, 2011
There used to be a guy who went to my school, named James, who was blind. One reason I thought James was cool was because of his competence and confidence in asking people for help. He would walk into a room and ask what he needed to know about what was in the room. (I don't mean to act like this is some kind of unusual quality in a blind person, but I hadn't met anyone who was blind before so it seemed really cool to me.)
Once I was talking to Noah about James and Noah told me something he had heard from James's former roommate. James's roommate had asked, "What do you imagine it would be like to be able to see?" and James said, "It would be like having a hand that could feel everything in a room all at once." This has always stuck with me and I don't think I realized why until I watched this video that's been going around tumblr.
The video is an ad for a marketing firm, called "The Power of Words." It depicts a blind guy begging on the street and not getting very much money. A woman comes up, grabs his sign, turns it over, and writes a new message on it. For the rest of the day, the blind guy makes tons of money, and when the woman comes back later he asks, "What did you do to my sign?" She says, "I wrote the same thing with different words."
This would obviously be patronizing no matter what the sign said, but I found the words on the sign to be the most interesting part of the video. The guy's sign originally says, "I'M BLIND, PLEASE HELP." The woman changes it to, "IT'S A BEAUTIFUL DAY AND I CAN'T SEE IT."
This illustrates exactly what non-disabled people want from disabled people.
A lot of blind people are unemployed either because they weren't taught the skills they need to be independent, or aren't given the proper accommodations for getting and keeping a job. I think it's reasonable in our society for a disabled person to express frustration that their disability keeps them from getting the things they want, and to ask for help from other people because of their situation. So although I find a blind beggar to be a questionable subject for an inspirational video, the existence of such a person is realistic and I don't feel that I can condemn the video just because it's about a disadvantaged disabled person asking for money.
However, we're told in the video that the fact that this guy can't work and needs money isn't enough for people to want to help him. People only want to help him when he comes out and says not only, "There are things I can't do because of my disability and that sucks," but, "My experience of the world sucks on an existential level, not just a practical one, because I can't experience the world the way non-disabled people can."
I think one of my Autistics Speaking Day posts was about my desire to always add the phrase, "It's no big deal," after telling people about my disability, even though it actually is a big deal. This is because I don't trust people to understand the difference between the fact that there are some bad things about being disabled, and the idea that my disabledness is tragic in some overarching, objective way. Or rather an overarching, objective, spiritual way, if you know what I mean--the idea that disabled people are less human or less alive due to being disabled.
I think the most negative view you could reasonably have about being disabled is that it makes your life really hard, and it makes you upset a lot, and that sucks. This isn't necessarily my view but I would never criticize another disabled person for having it. But that isn't enough for non-disabled people. They have to feel that disabled people are missing not just the ability to have a job or feel secure, but that we're actually missing a vital part of being alive on the pure basis of our impairment.
I realize now that what James said stuck out to me because I heard it in the context of a society where stories about blind people are often about how they don't get to look at sunsets, or colors, and how tragic that is. I think I remember reading a children's book about a kid who "helps" his blind friend by describing different colors to him in terms of emotion. But if you're blind, the really cool, lovely details of life don't have to do with visual information because that just isn't a part of your life. Not getting to look at a sunset really isn't a big problem. What I liked about James's quote was that he thought of problems due to blindness in very practical terms--because he was blind, he didn't immediately know what was in a room the way sighted people did.
But for sighted people, this isn't enough.
Blind people have to say that their day is worse on an experiential level because they are blind.
And I think this duality--objective impairment, and the nebulous, often unlikely connotations of misery that are attached to it--explains a lot of the things non-disabled people do to disabled people, and why they seem so ridiculous when you look at them straight on.
Once I was talking to Noah about James and Noah told me something he had heard from James's former roommate. James's roommate had asked, "What do you imagine it would be like to be able to see?" and James said, "It would be like having a hand that could feel everything in a room all at once." This has always stuck with me and I don't think I realized why until I watched this video that's been going around tumblr.
The video is an ad for a marketing firm, called "The Power of Words." It depicts a blind guy begging on the street and not getting very much money. A woman comes up, grabs his sign, turns it over, and writes a new message on it. For the rest of the day, the blind guy makes tons of money, and when the woman comes back later he asks, "What did you do to my sign?" She says, "I wrote the same thing with different words."
This would obviously be patronizing no matter what the sign said, but I found the words on the sign to be the most interesting part of the video. The guy's sign originally says, "I'M BLIND, PLEASE HELP." The woman changes it to, "IT'S A BEAUTIFUL DAY AND I CAN'T SEE IT."
This illustrates exactly what non-disabled people want from disabled people.
A lot of blind people are unemployed either because they weren't taught the skills they need to be independent, or aren't given the proper accommodations for getting and keeping a job. I think it's reasonable in our society for a disabled person to express frustration that their disability keeps them from getting the things they want, and to ask for help from other people because of their situation. So although I find a blind beggar to be a questionable subject for an inspirational video, the existence of such a person is realistic and I don't feel that I can condemn the video just because it's about a disadvantaged disabled person asking for money.
However, we're told in the video that the fact that this guy can't work and needs money isn't enough for people to want to help him. People only want to help him when he comes out and says not only, "There are things I can't do because of my disability and that sucks," but, "My experience of the world sucks on an existential level, not just a practical one, because I can't experience the world the way non-disabled people can."
I think one of my Autistics Speaking Day posts was about my desire to always add the phrase, "It's no big deal," after telling people about my disability, even though it actually is a big deal. This is because I don't trust people to understand the difference between the fact that there are some bad things about being disabled, and the idea that my disabledness is tragic in some overarching, objective way. Or rather an overarching, objective, spiritual way, if you know what I mean--the idea that disabled people are less human or less alive due to being disabled.
I think the most negative view you could reasonably have about being disabled is that it makes your life really hard, and it makes you upset a lot, and that sucks. This isn't necessarily my view but I would never criticize another disabled person for having it. But that isn't enough for non-disabled people. They have to feel that disabled people are missing not just the ability to have a job or feel secure, but that we're actually missing a vital part of being alive on the pure basis of our impairment.
I realize now that what James said stuck out to me because I heard it in the context of a society where stories about blind people are often about how they don't get to look at sunsets, or colors, and how tragic that is. I think I remember reading a children's book about a kid who "helps" his blind friend by describing different colors to him in terms of emotion. But if you're blind, the really cool, lovely details of life don't have to do with visual information because that just isn't a part of your life. Not getting to look at a sunset really isn't a big problem. What I liked about James's quote was that he thought of problems due to blindness in very practical terms--because he was blind, he didn't immediately know what was in a room the way sighted people did.
But for sighted people, this isn't enough.
Blind people have to say that their day is worse on an experiential level because they are blind.
And I think this duality--objective impairment, and the nebulous, often unlikely connotations of misery that are attached to it--explains a lot of the things non-disabled people do to disabled people, and why they seem so ridiculous when you look at them straight on.
hurt, power, and disability
Fasten your seatbelts because this is LONG.
In high school I enjoyed reading flamewars between anti-s/m people and their targets, just because it never failed to make me irritated in a comfortably predictable way. It's only natural that I grew up to be fascinated by "but my child smears feces" and other ableist shock arguments, given that I spent my adolescence reading the arguments of anti-s/m people which often seem to consist of listing sex acts that, while enjoyable to the participants, sound gross or upsetting to the average person.
I think what makes me able to derive masochistic enjoyment (ha ha) from anti-s/m arguments, while ableist arguments just destroy me and break my heart, is that there’s less of a sense of immediate danger. A lot of the time, people who are making ableist arguments are in a direct position of power over disabled people, as parents, professionals, heads of an organization, etc., and are actively working to put their beliefs into practice. People who are making anti-s/m arguments often seem to be talking in this weird philosophical way about what sex acts other people should engage in or fantasize about.
I don’t mean to sound like I think s/m people don't get discriminated against, but when it comes to flamewars on the Internet my response to anti-s/m people is one of being annoyed and baffled rather than afraid. Because most people grow up liking whatever they like, sexually, so anti-s/m people seem to be implying that certain people just shouldn’t have sex, which seems like such an obviously douchey and ridiculous demand to make of another person that I can’t believe they spend so much time saying it and feeling as righteous about it as they do.
That said, if I was going to engage with the argument that people shouldn’t do s/m and/or d/s because it’s bad for your politics and your health, I would say that, in an alternate universe where people could choose what sexual acts they were into, there would be very good reasons for a disabled person to think about choosing to be into s/m and power exchange. As an inhabitant of the real world, I just think the intersection of s/m and disability is a happy accident for the people who experience it, rather than something anyone can or should “try” because it can destabilize and alleviate some of the bad parts of being disabled. But I want to write about what those destabilizations and alleviations can be, in the context of stuff like Failure Theory and The Classic Disability Catch-22. A few of the things I’m saying are specific to autism but many of them are not which is why I’m using the term “disabled,” throughout.
One by one I’m going to discuss hurting someone, receiving hurt, dominance, and submission, and what engaging in each of those four things might do, mean, or bring up for someone who is disabled. Most of what I write will be in the form of questions because I’m talking generally, and even if I wasn’t there probably would still be no cut-and-dry meaning or effect or answer.
Hurting Someone
(I’m talking about “hurt” instead of “pain” because I don’t want to imply that I’m only talking about physical pain. I do think hurt is a problematic word for me to have chosen because it seems to imply actual harm, which I obviously don’t think should be present.)
People with psychiatric and developmental disabilities are constantly living against the expectation that we’re going to be physically violent or, in the more “harmless” version of developmental disability stereotypes in particular, that we’re going to offend people and otherwise misunderstand what they want and need from us. Some of us experience police brutality due to being read as "dangerous" just because of the effects of our disability. The idealized behavior for a disabled person is that of working incredibly hard to fit ourselves around and into other people’s desires. If we don’t do this we risk various stigmas, some merely insulting and some negative enough to cause us to lose our job, be arrested, etc., when we haven’t actually hurt anyone.
So, if you live your life having been taught that you could hurt someone at any minute--or maybe you know that’s not true, but you still know that other people think that and you have to manage their reactions to you--what does it mean to decide to hurt someone, and do so carefully and in a way that’s enjoyable to them? What does it mean to realize that, actually, you are not on the verge of exploding and killing someone like in Of Mice and Men--that you can actually be in control of how you hurt someone, and do it “correctly” (for them)?
What does it mean to throw out your usual mindset--be nice, apologize a lot, don’t talk too loud, don’t move too fast? What does it mean for your concept of being a socially skilled person, being polite, or being a good person, if you interact with someone by a completely different (or even opposite) set of rules from your usual set, and this pleases them? Actually I do think there’s an answer to this one, but I’ll spare you the boredom of hearing it from me again.
This is something that I’ll come back to in every section, I guess, and it’s one of the things that is fairly autism-specific. What does it mean to work hard to affect someone in a certain way, and have them appreciate that and see it as something that takes energy and skill, instead of just expecting it?
Also--and this is a topping/hurting-specific thing I guess--in some people’s dynamic, you could even hurt someone in a way they don’t like, and that would be fine; within limits, their feelings are irrelevant to what happens. What if the way you and your partner/s do sex is that you do whatever you want and they’re expected to adjust to you?
Receiving Hurt
One of the most important qualities for a successful disabled person is the ability to bear pain quietly; and not only should you bear pain quietly, but you should bear pain quietly, quietly. The most perfect disabled person receives emotional and physical discomfort and pain with a complete poker face, and this is in the service of a goal: appearing to experience the same amount of pain as non-disabled people, and for the same reasons. Which is to say that the most perfect disabled person appears non-disabled and is not admired by anyone for her stoicism because, if she’s doing it right, no one knows she has anything to be stoic about. If you’re disabled, you deserve to have pain as an invisible constant force in your life, and you deserve it so much it’s not even worth mentioning.
While I’m at it I should mention that some disabled people don’t know what we want, or what hurts us, or what harms us. This can be because of cognitive and language aspects of our disabilities (not being able to sense we’re in pain, or articulate it), or because we have chronic pain and become inured to the sensation, or because people are always telling us what a normal person would be feeling or wanting in our situation, or a combination of those things.
What does it mean to say that you want pain, when you’ve spent your whole life pretending pain doesn’t exist because the expression of pain is so horrifying to people? What does it mean to be able to tell someone that you are or were in pain without this being something that makes them either pity you, or resent you because they see you as lying or exaggerating your pain to get pity?
What does it mean if someone actually enjoys your reaction to being in pain, and wants you to say and show them that you’re in pain? Conversely, what does it mean if you can be very stoic about pain, and someone actually appreciates that about you and sees it as a special skill, instead of a prerequisite for being respected as a decent and competent person?
Also, what does it mean to have it actually be important and expected that you try to figure out what level of hurt is harm, and what your limits are? What does it mean to have a word that means “this isn’t okay it has to stop,” and the other person’s actually supposed to listen?
(I just realized that I was using the word pain instead of hurt for this whole section. I still meant it in the broadest possible way.)
Dominance
In The Classic Disability Catch-22, I wrote that in order to be seen as the kind of disabled person who deserves to be successful, you must make it appear as though there’s nothing you can’t do. This means that you have to perform beyond your means, damaging yourself in the process, and/or lie and trick people into thinking you’re doing things you’re not actually doing. Because of the dishonesty and recklessness involved in fulfilling this requirement, no one who is perceived as belonging to this elite class of disabled people actually feels secure as a member of that class. This is Failure Theory. Of course, people who aren’t perceived as belonging to that class of disabled people have it a lot worse; they have shown the wrong kinds of weakness and impairment, and barring some extraordinary feat of illusion or strength, they will not be seen as deserving the support or acceptance they need to achieve their goals.
There’s also the issue of “body language” and what that means about your sense of power, authority, and control in the real world. If you look disabled, you look like prey. You may look, to some people, like you shouldn’t be out on your own. Your eye gaze or the way you speak may cause people to read you as shifty, incompetent, frightened, or shy--and given the way people read you, you probably do feel shifty, frightened, and shy, and may be beginning to wonder if you are incompetent.
You may be told that in order to deserve respect, or to be seen as a competent or smart or secure person, you have to have the ability to speak in a certain way and look at people in a certain way; or, as discussed in the “receiving hurt” section, you may have to be able to be stoic about things that you simply can’t be stoic about.
When someone decides to submit to a person who is stuck on one side or the other of the Classic Disability Catch-22, is regularly mistaken for a child, starts crying on the subway, needs help getting dressed, can’t speak loudly enough to be heard by most people, etc. etc. etc., this is a dissolution of standards about what kind of person is supposed to be allowed to have authority and control, whether by the standards of society or by the person’s own standards (in the case of people who are read as non-disabled or successful disabled people, but suffer from Failure Theory).
Submission
Obviously submission doesn’t have to do with whether someone is “weak” in a pervasive sense, but for a lot of people being submissive involves doing and saying things that are associated culturally with weakness and vulnerability. It also sometimes involves letting go of control and doing what someone else says.
So if you’re in a position, in real life, where you have a chance to be successful only as long as you never show weakness, then what does it mean to be able to express weakness with someone and not be destroyed by it? To have someone actually like and enjoy that part of you, and want to see it, and still respect you when they see it? On the other hand, if your real life position is one of being fucked over because you’re read as weak or because there are things you can’t do--again, what does it mean to express weakness or inabilities to someone and have them think it’s cool, and have them respect you regardless?
Performing weakness, or allowing yourself to sincerely experience weakness, is an act that is comparable to the act of deciding to hurt someone. It involves a similar controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.
I find it astoundingly privileged when anti-s/m people talk about how, for example, doing power exchange is “bringing in” all these terrible things from the outside world into your relationship. When you’re disabled, lack of power is such a huge part of who you are that it’s hard to imagine that not being a part of any relationship you have. So, like, that would be really cool to be worrying about “bringing in a hierarchy” or “bringing in brokenness” into a relationship. It sounds like a charmed life.
I haven’t come across much discussion of the s/m and disability intersection; staticnonsense’s Kinky Disability posts, which I love, are really one of the only attempts to address the issue that I have seen on any disability blog. Before the Disability Internet, of course, there was Bob Flanagan, but I haven’t done enough research to know if he was part of any kind of movement. I feel nervous about posting this because it is so long and I haven’t really written about any kind of sexuality before, but I just think this intersection is a really fascinating one and worth talking about.
In high school I enjoyed reading flamewars between anti-s/m people and their targets, just because it never failed to make me irritated in a comfortably predictable way. It's only natural that I grew up to be fascinated by "but my child smears feces" and other ableist shock arguments, given that I spent my adolescence reading the arguments of anti-s/m people which often seem to consist of listing sex acts that, while enjoyable to the participants, sound gross or upsetting to the average person.
I think what makes me able to derive masochistic enjoyment (ha ha) from anti-s/m arguments, while ableist arguments just destroy me and break my heart, is that there’s less of a sense of immediate danger. A lot of the time, people who are making ableist arguments are in a direct position of power over disabled people, as parents, professionals, heads of an organization, etc., and are actively working to put their beliefs into practice. People who are making anti-s/m arguments often seem to be talking in this weird philosophical way about what sex acts other people should engage in or fantasize about.
I don’t mean to sound like I think s/m people don't get discriminated against, but when it comes to flamewars on the Internet my response to anti-s/m people is one of being annoyed and baffled rather than afraid. Because most people grow up liking whatever they like, sexually, so anti-s/m people seem to be implying that certain people just shouldn’t have sex, which seems like such an obviously douchey and ridiculous demand to make of another person that I can’t believe they spend so much time saying it and feeling as righteous about it as they do.
That said, if I was going to engage with the argument that people shouldn’t do s/m and/or d/s because it’s bad for your politics and your health, I would say that, in an alternate universe where people could choose what sexual acts they were into, there would be very good reasons for a disabled person to think about choosing to be into s/m and power exchange. As an inhabitant of the real world, I just think the intersection of s/m and disability is a happy accident for the people who experience it, rather than something anyone can or should “try” because it can destabilize and alleviate some of the bad parts of being disabled. But I want to write about what those destabilizations and alleviations can be, in the context of stuff like Failure Theory and The Classic Disability Catch-22. A few of the things I’m saying are specific to autism but many of them are not which is why I’m using the term “disabled,” throughout.
One by one I’m going to discuss hurting someone, receiving hurt, dominance, and submission, and what engaging in each of those four things might do, mean, or bring up for someone who is disabled. Most of what I write will be in the form of questions because I’m talking generally, and even if I wasn’t there probably would still be no cut-and-dry meaning or effect or answer.
Hurting Someone
(I’m talking about “hurt” instead of “pain” because I don’t want to imply that I’m only talking about physical pain. I do think hurt is a problematic word for me to have chosen because it seems to imply actual harm, which I obviously don’t think should be present.)
People with psychiatric and developmental disabilities are constantly living against the expectation that we’re going to be physically violent or, in the more “harmless” version of developmental disability stereotypes in particular, that we’re going to offend people and otherwise misunderstand what they want and need from us. Some of us experience police brutality due to being read as "dangerous" just because of the effects of our disability. The idealized behavior for a disabled person is that of working incredibly hard to fit ourselves around and into other people’s desires. If we don’t do this we risk various stigmas, some merely insulting and some negative enough to cause us to lose our job, be arrested, etc., when we haven’t actually hurt anyone.
So, if you live your life having been taught that you could hurt someone at any minute--or maybe you know that’s not true, but you still know that other people think that and you have to manage their reactions to you--what does it mean to decide to hurt someone, and do so carefully and in a way that’s enjoyable to them? What does it mean to realize that, actually, you are not on the verge of exploding and killing someone like in Of Mice and Men--that you can actually be in control of how you hurt someone, and do it “correctly” (for them)?
What does it mean to throw out your usual mindset--be nice, apologize a lot, don’t talk too loud, don’t move too fast? What does it mean for your concept of being a socially skilled person, being polite, or being a good person, if you interact with someone by a completely different (or even opposite) set of rules from your usual set, and this pleases them? Actually I do think there’s an answer to this one, but I’ll spare you the boredom of hearing it from me again.
This is something that I’ll come back to in every section, I guess, and it’s one of the things that is fairly autism-specific. What does it mean to work hard to affect someone in a certain way, and have them appreciate that and see it as something that takes energy and skill, instead of just expecting it?
Also--and this is a topping/hurting-specific thing I guess--in some people’s dynamic, you could even hurt someone in a way they don’t like, and that would be fine; within limits, their feelings are irrelevant to what happens. What if the way you and your partner/s do sex is that you do whatever you want and they’re expected to adjust to you?
Receiving Hurt
One of the most important qualities for a successful disabled person is the ability to bear pain quietly; and not only should you bear pain quietly, but you should bear pain quietly, quietly. The most perfect disabled person receives emotional and physical discomfort and pain with a complete poker face, and this is in the service of a goal: appearing to experience the same amount of pain as non-disabled people, and for the same reasons. Which is to say that the most perfect disabled person appears non-disabled and is not admired by anyone for her stoicism because, if she’s doing it right, no one knows she has anything to be stoic about. If you’re disabled, you deserve to have pain as an invisible constant force in your life, and you deserve it so much it’s not even worth mentioning.
While I’m at it I should mention that some disabled people don’t know what we want, or what hurts us, or what harms us. This can be because of cognitive and language aspects of our disabilities (not being able to sense we’re in pain, or articulate it), or because we have chronic pain and become inured to the sensation, or because people are always telling us what a normal person would be feeling or wanting in our situation, or a combination of those things.
What does it mean to say that you want pain, when you’ve spent your whole life pretending pain doesn’t exist because the expression of pain is so horrifying to people? What does it mean to be able to tell someone that you are or were in pain without this being something that makes them either pity you, or resent you because they see you as lying or exaggerating your pain to get pity?
What does it mean if someone actually enjoys your reaction to being in pain, and wants you to say and show them that you’re in pain? Conversely, what does it mean if you can be very stoic about pain, and someone actually appreciates that about you and sees it as a special skill, instead of a prerequisite for being respected as a decent and competent person?
Also, what does it mean to have it actually be important and expected that you try to figure out what level of hurt is harm, and what your limits are? What does it mean to have a word that means “this isn’t okay it has to stop,” and the other person’s actually supposed to listen?
(I just realized that I was using the word pain instead of hurt for this whole section. I still meant it in the broadest possible way.)
Dominance
In The Classic Disability Catch-22, I wrote that in order to be seen as the kind of disabled person who deserves to be successful, you must make it appear as though there’s nothing you can’t do. This means that you have to perform beyond your means, damaging yourself in the process, and/or lie and trick people into thinking you’re doing things you’re not actually doing. Because of the dishonesty and recklessness involved in fulfilling this requirement, no one who is perceived as belonging to this elite class of disabled people actually feels secure as a member of that class. This is Failure Theory. Of course, people who aren’t perceived as belonging to that class of disabled people have it a lot worse; they have shown the wrong kinds of weakness and impairment, and barring some extraordinary feat of illusion or strength, they will not be seen as deserving the support or acceptance they need to achieve their goals.
There’s also the issue of “body language” and what that means about your sense of power, authority, and control in the real world. If you look disabled, you look like prey. You may look, to some people, like you shouldn’t be out on your own. Your eye gaze or the way you speak may cause people to read you as shifty, incompetent, frightened, or shy--and given the way people read you, you probably do feel shifty, frightened, and shy, and may be beginning to wonder if you are incompetent.
You may be told that in order to deserve respect, or to be seen as a competent or smart or secure person, you have to have the ability to speak in a certain way and look at people in a certain way; or, as discussed in the “receiving hurt” section, you may have to be able to be stoic about things that you simply can’t be stoic about.
When someone decides to submit to a person who is stuck on one side or the other of the Classic Disability Catch-22, is regularly mistaken for a child, starts crying on the subway, needs help getting dressed, can’t speak loudly enough to be heard by most people, etc. etc. etc., this is a dissolution of standards about what kind of person is supposed to be allowed to have authority and control, whether by the standards of society or by the person’s own standards (in the case of people who are read as non-disabled or successful disabled people, but suffer from Failure Theory).
Submission
Obviously submission doesn’t have to do with whether someone is “weak” in a pervasive sense, but for a lot of people being submissive involves doing and saying things that are associated culturally with weakness and vulnerability. It also sometimes involves letting go of control and doing what someone else says.
So if you’re in a position, in real life, where you have a chance to be successful only as long as you never show weakness, then what does it mean to be able to express weakness with someone and not be destroyed by it? To have someone actually like and enjoy that part of you, and want to see it, and still respect you when they see it? On the other hand, if your real life position is one of being fucked over because you’re read as weak or because there are things you can’t do--again, what does it mean to express weakness or inabilities to someone and have them think it’s cool, and have them respect you regardless?
Performing weakness, or allowing yourself to sincerely experience weakness, is an act that is comparable to the act of deciding to hurt someone. It involves a similar controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.
I find it astoundingly privileged when anti-s/m people talk about how, for example, doing power exchange is “bringing in” all these terrible things from the outside world into your relationship. When you’re disabled, lack of power is such a huge part of who you are that it’s hard to imagine that not being a part of any relationship you have. So, like, that would be really cool to be worrying about “bringing in a hierarchy” or “bringing in brokenness” into a relationship. It sounds like a charmed life.
I haven’t come across much discussion of the s/m and disability intersection; staticnonsense’s Kinky Disability posts, which I love, are really one of the only attempts to address the issue that I have seen on any disability blog. Before the Disability Internet, of course, there was Bob Flanagan, but I haven’t done enough research to know if he was part of any kind of movement. I feel nervous about posting this because it is so long and I haven’t really written about any kind of sexuality before, but I just think this intersection is a really fascinating one and worth talking about.
20 April, 2011
some models and their applications in fiction
To me there are three ways of portraying disability in fiction--medical model, social model, and fake social model, with the first and the last being the most common. Although I wouldn't say it's the best movie I've ever seen, It's Kind of a Funny Story was impressive in its attempt to tell a story within the social model. It doesn't see the main character's problems--suicidal ideation and panic attacks--as a reason to avoid making a fairly typical quirky teen comedy with montages, huge amounts of voiceover, and animated sequences. And although Craig, the protagonist, is in a psych ward with people who have more severe problems than his, he ultimately identifies as "like them." The standard romantic conflict, where a boy must choose between the girl he always thought he wanted and a new girl he really should be with, is here about normalcy vs. visible psychiatric disability. The non-disabled girl Craig thinks he wants sees his hospitalization as "edgy," but is disgusted when his anxiety causes him to throw up; the girl he should be with cuts herself on her face. Reviews of It's Kind of a Funny Story insisted on reading it as either medical model or fake social model, and effectively criticized it for having a protagonist whose disability wasn't obvious or severe enough.
What medical model means in pop culture should be obvious enough. In this dour movie, Craig displays every textbook symptom of depression and anxiety, and the montages and fantasy sequences are excised because they're not appropriate for such a serious subject. Also excised are the major subplots about the academic pressure Craig is under from his friends, school, and family, and how this conflicts with his love of drawing. This might imply that society contributes to Craig's problems, which would mean he isn't really ill, just sensitive! Real disability is obvious and, when untreated, looks the same in all situations.
Fake social model is more fun to watch--a fake social movie could definitely include montages--but it's ultimately just as unsatisfying and lacking in truth. I call it fake social model because I think it's what people are responding to when they say things like, "In this case, the social model fails." Sorry, guys. Prophecies can fail, tongues can cease--but the social model remains applicable to every case there ever has been or will be. The thing is if we say "disability isn't real," we mean objectively. Many important things are not objectively real. The fake social model takes the perspective of, "Not only is disability not objectively real, but it isn't real, full stop." Of course, this is obviously not true, which means that stories in the fake social model which have more than one disabled-identified character often portray the main characters in fake social model, and other characters in medical model. The way this would work in It's Kind of a Funny Story would be to show Craig's anxiety and depression as entirely caused by external pressure, or even imagined out of nowhere because he lives in a society that is always "labeling people." The more severely, inarguably disabled characters would function as jokes--how funny that anyone would think Craig is like them, when he's clearly like us!--and possibly by tragic example they would convince Craig that, since he's not as bad off as they are, he must be normal. The girl Craig falls for would also be fake social model, and in all likelihood would not cut her face--self-injury is serious, you know, and a character who's Not Like Us is too sad or funny to be a viable romantic interest.
Fake social model is frustrating because, of course, it always fails when applied to all disabled people. So it ends up promoting a feeling which is even more offensive than the medical model--that it is wrong for our hero to be under pressure, overmedicated, involuntarily committed, stigmatized, or whatever else he or she faces, as a result of being mistakenly identified as disabled. FWD/Forward did a whole post discussing tropes of non-mentally ill people who end up in psych wards, and came to much the same conclusion. The implication is, invariably, "this is wrong because the hero isn't really disabled." Real disabled people, those ghouls, deserve all this, but fortunately it is not Our Life.
The third option, of course, is social model. True social model can be any genre, though pure tragedy or educational film often has difficulty understanding it. Life tends not to feel like either of those things. It's probably no surprise that I began this post thinking about Skins which awestruck me with its ability to hold two ideas in its head at the same time--a)JJ is genuinely disabled, and b)the stigma he faces is a problem. This is real social model writing, which pays attention to both impairment and outside pressure, as well as the ways the two can exacerbate each other. Though aspects of It's Kind of a Funny Story are very naive, and it doesn't reject fake social model as clearly as I would like, the movie cares enough to portray a complex disability experience and should be commended.
What medical model means in pop culture should be obvious enough. In this dour movie, Craig displays every textbook symptom of depression and anxiety, and the montages and fantasy sequences are excised because they're not appropriate for such a serious subject. Also excised are the major subplots about the academic pressure Craig is under from his friends, school, and family, and how this conflicts with his love of drawing. This might imply that society contributes to Craig's problems, which would mean he isn't really ill, just sensitive! Real disability is obvious and, when untreated, looks the same in all situations.
Fake social model is more fun to watch--a fake social movie could definitely include montages--but it's ultimately just as unsatisfying and lacking in truth. I call it fake social model because I think it's what people are responding to when they say things like, "In this case, the social model fails." Sorry, guys. Prophecies can fail, tongues can cease--but the social model remains applicable to every case there ever has been or will be. The thing is if we say "disability isn't real," we mean objectively. Many important things are not objectively real. The fake social model takes the perspective of, "Not only is disability not objectively real, but it isn't real, full stop." Of course, this is obviously not true, which means that stories in the fake social model which have more than one disabled-identified character often portray the main characters in fake social model, and other characters in medical model. The way this would work in It's Kind of a Funny Story would be to show Craig's anxiety and depression as entirely caused by external pressure, or even imagined out of nowhere because he lives in a society that is always "labeling people." The more severely, inarguably disabled characters would function as jokes--how funny that anyone would think Craig is like them, when he's clearly like us!--and possibly by tragic example they would convince Craig that, since he's not as bad off as they are, he must be normal. The girl Craig falls for would also be fake social model, and in all likelihood would not cut her face--self-injury is serious, you know, and a character who's Not Like Us is too sad or funny to be a viable romantic interest.
Fake social model is frustrating because, of course, it always fails when applied to all disabled people. So it ends up promoting a feeling which is even more offensive than the medical model--that it is wrong for our hero to be under pressure, overmedicated, involuntarily committed, stigmatized, or whatever else he or she faces, as a result of being mistakenly identified as disabled. FWD/Forward did a whole post discussing tropes of non-mentally ill people who end up in psych wards, and came to much the same conclusion. The implication is, invariably, "this is wrong because the hero isn't really disabled." Real disabled people, those ghouls, deserve all this, but fortunately it is not Our Life.
The third option, of course, is social model. True social model can be any genre, though pure tragedy or educational film often has difficulty understanding it. Life tends not to feel like either of those things. It's probably no surprise that I began this post thinking about Skins which awestruck me with its ability to hold two ideas in its head at the same time--a)JJ is genuinely disabled, and b)the stigma he faces is a problem. This is real social model writing, which pays attention to both impairment and outside pressure, as well as the ways the two can exacerbate each other. Though aspects of It's Kind of a Funny Story are very naive, and it doesn't reject fake social model as clearly as I would like, the movie cares enough to portray a complex disability experience and should be commended.
13 April, 2011
apologies & far future promises
Gosh I don't post very much do I. Sorry about that. I'm not quitting. I do post on tumblr a lot, and fairly often converse about disability stuff on there. But when I'm at school it's kind of like there are the things that I run away to when I'm stressed, and it used to be this blog but now it's more often tumblr. But you know after I graduate and all I'll be able to focus and write here more. I have lots of ideas, unfortunately, as usual, including:
1. disability and gender expression, especially painful gender expression. If you have sensory & cognitive problems, being feminine or masculine can hurt, maybe being feminine especially. Among liberal people, I feel like it's often seen as a weak/oppressed behavior for someone to care so much what they look like that they would suffer for it, but given the sort of things that cause me to suffer or be overtaxed, not suffering would kind of mean not expressing myself through presentation at all. So that's interesting.
2. this post I already wrote in a notebook months ago where I talked about 3 different ways of portraying disability in pop culture: medical model (dour fiction where authority figures are always right), fake social model (funny and interesting fiction where authority figures are wrong, but the "disabled" character isn't really disabled), and actual social model. And I discuss the movie It's Kind of a Funny Story which was an admirable attempt at making a mainstream movie in social model, but was annoyingly written off by reviewers when they couldn't categorize it as medical or fake social model. So this one I just have to type up.
3. really long post which I have written a lot of, where I attempt to show that both person-first language and disability-first language are offensive, so we basically can't win and should stop caring.
4. possibly a post about The United States of Tara? As someone who doesn't have DID or have any friends with DID, my understanding is that the show portrays DID quite unrealistically so I probably should reject it. But I can't just see it as a guilty pleasure that I stick with because I've been watching it for years--there's something about the show's portrayal of disability that is really down-to-earth.
1. disability and gender expression, especially painful gender expression. If you have sensory & cognitive problems, being feminine or masculine can hurt, maybe being feminine especially. Among liberal people, I feel like it's often seen as a weak/oppressed behavior for someone to care so much what they look like that they would suffer for it, but given the sort of things that cause me to suffer or be overtaxed, not suffering would kind of mean not expressing myself through presentation at all. So that's interesting.
2. this post I already wrote in a notebook months ago where I talked about 3 different ways of portraying disability in pop culture: medical model (dour fiction where authority figures are always right), fake social model (funny and interesting fiction where authority figures are wrong, but the "disabled" character isn't really disabled), and actual social model. And I discuss the movie It's Kind of a Funny Story which was an admirable attempt at making a mainstream movie in social model, but was annoyingly written off by reviewers when they couldn't categorize it as medical or fake social model. So this one I just have to type up.
3. really long post which I have written a lot of, where I attempt to show that both person-first language and disability-first language are offensive, so we basically can't win and should stop caring.
4. possibly a post about The United States of Tara? As someone who doesn't have DID or have any friends with DID, my understanding is that the show portrays DID quite unrealistically so I probably should reject it. But I can't just see it as a guilty pleasure that I stick with because I've been watching it for years--there's something about the show's portrayal of disability that is really down-to-earth.
I was thinking about identifying as gay and why that’s weird for me, I guess in the short term because I like a boy right now, but in the long term because I don’t consider this (or any other instances that may occur) to be exceptions to the rule of my orientation, but in fact to be consistent with it.
I wouldn’t correct someone who called me queer, as that also describes me, but gay or homosexual is the label I’d rather use. I see why the word queer is appealing because of its fluidity but it’s precisely that fluidity that causes me not to prefer it, and even caused me to hate and reject it when I was younger. As a teenager, I had experiences that shaped my personality and spirituality which were based in being not “other than straight” but a girl who was attracted to other girls and not attracted to boys. (I guess I should say female-assigned because I didn’t really identify as a girl for some periods of my adolescence.)
In the really lonely times that made me the person I am, being gay felt like the most important aspect of me even as it was the most damning. The fact that I was not attracted to boys was a big part of it because it wasn’t just “I’m different” but “there is actually no way I can fit into the world as the world seems to be.” I remember almost starting to cry at school one day when I was in a room with some girls who started having a conversation about which smells were most attractive on boys.
It also is a wonderful and painful part of my life that I have really close, physically and emotionally affectionate, friendships with straight guys. It’s wonderful for the closeness, but painful for various reasons: feeling outranked in importance by my friends’ girlfriends, feeling like I don’t count because I can’t provide sex, feeling like I’m seen as a threat because I’m a girl who’s close with someone’s boyfriend and I have to distance myself/quit being physically affectionate to show that I’m not a threat, being mistaken for a friend’s girlfriend and getting approval from straight people for our perceived relationship, which is kind of painful, and so on. All these experiences are ones that I have pretty regularly so being not attracted to boys is a big part of my life and I’d like to continue to claim it as part of my identity whether or not I happen to like a boy at the time.
Okay, so what do I mean by saying that I can like a boy without it being an exception, but I’m not attracted to boys?
Well, there are multiple factors that lead to me being strongly attracted to someone. I’m attracted to people who are very translucent about their feelings, who are clever, and who put me in a certain frame of mind sexually. Those are the three most important factors—well four I guess as gender is probably up there with those three as a massively important factor. Then there’s stuff that would trigger me to be attracted to someone, like having blue eyes, but that I don’t really feel the absence of in the strength of my attraction.
Let’s say that I said, “I’m attracted to people who have black hair and I don’t find any other hair color attractive,” and I lived in a society where the hair color that you were attracted to was really important, and I wasn’t raised knowing that I could like people with black hair, and I thought God might be punishing me for liking people with black hair, and it was this huge experience in my life. I mean, I’m giving this backstory to explain why I might say about myself on a regular basis, “I’m attracted to people who have black hair and I don’t find any other hair color attractive.” Because it would be very important, if I lived in that world.
But in the real world, where hair color preference isn’t seen as the most important aspect of your sexuality, if I liked someone who had blond hair—not because they had blond hair, but because everything else about them was one of my triggers for attraction—this really wouldn’t be some big shift in my sexuality where I’d now have to say, “I’m attracted to people with black hair and people with blond hair,” because I wouldn’t be any more attracted to blond-haired people than I was before, and in fact I still wouldn’t be attracted to blond-haired-ness at all. It would just be that it wasn’t the only defining factor in me being attracted to someone.
To make a really long story short, I am gay but although gender’s a hugely strong factor for me, there are other equally strong or stronger ones. But there’s not a word for this, sad times.
I wouldn’t correct someone who called me queer, as that also describes me, but gay or homosexual is the label I’d rather use. I see why the word queer is appealing because of its fluidity but it’s precisely that fluidity that causes me not to prefer it, and even caused me to hate and reject it when I was younger. As a teenager, I had experiences that shaped my personality and spirituality which were based in being not “other than straight” but a girl who was attracted to other girls and not attracted to boys. (I guess I should say female-assigned because I didn’t really identify as a girl for some periods of my adolescence.)
In the really lonely times that made me the person I am, being gay felt like the most important aspect of me even as it was the most damning. The fact that I was not attracted to boys was a big part of it because it wasn’t just “I’m different” but “there is actually no way I can fit into the world as the world seems to be.” I remember almost starting to cry at school one day when I was in a room with some girls who started having a conversation about which smells were most attractive on boys.
It also is a wonderful and painful part of my life that I have really close, physically and emotionally affectionate, friendships with straight guys. It’s wonderful for the closeness, but painful for various reasons: feeling outranked in importance by my friends’ girlfriends, feeling like I don’t count because I can’t provide sex, feeling like I’m seen as a threat because I’m a girl who’s close with someone’s boyfriend and I have to distance myself/quit being physically affectionate to show that I’m not a threat, being mistaken for a friend’s girlfriend and getting approval from straight people for our perceived relationship, which is kind of painful, and so on. All these experiences are ones that I have pretty regularly so being not attracted to boys is a big part of my life and I’d like to continue to claim it as part of my identity whether or not I happen to like a boy at the time.
Okay, so what do I mean by saying that I can like a boy without it being an exception, but I’m not attracted to boys?
Well, there are multiple factors that lead to me being strongly attracted to someone. I’m attracted to people who are very translucent about their feelings, who are clever, and who put me in a certain frame of mind sexually. Those are the three most important factors—well four I guess as gender is probably up there with those three as a massively important factor. Then there’s stuff that would trigger me to be attracted to someone, like having blue eyes, but that I don’t really feel the absence of in the strength of my attraction.
Let’s say that I said, “I’m attracted to people who have black hair and I don’t find any other hair color attractive,” and I lived in a society where the hair color that you were attracted to was really important, and I wasn’t raised knowing that I could like people with black hair, and I thought God might be punishing me for liking people with black hair, and it was this huge experience in my life. I mean, I’m giving this backstory to explain why I might say about myself on a regular basis, “I’m attracted to people who have black hair and I don’t find any other hair color attractive.” Because it would be very important, if I lived in that world.
But in the real world, where hair color preference isn’t seen as the most important aspect of your sexuality, if I liked someone who had blond hair—not because they had blond hair, but because everything else about them was one of my triggers for attraction—this really wouldn’t be some big shift in my sexuality where I’d now have to say, “I’m attracted to people with black hair and people with blond hair,” because I wouldn’t be any more attracted to blond-haired people than I was before, and in fact I still wouldn’t be attracted to blond-haired-ness at all. It would just be that it wasn’t the only defining factor in me being attracted to someone.
To make a really long story short, I am gay but although gender’s a hugely strong factor for me, there are other equally strong or stronger ones. But there’s not a word for this, sad times.
07 April, 2011
from June 2009
[I found this on my old livejournal, it's quite different from how I feel about things now but I thought it might be interesting.]
Liz called me yesterday because she was bored.
I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.
Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.
So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.
Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.
Liz called me yesterday because she was bored.
I'm accidentally rereading my favorite book, Send in the Idiots by Kamran Nazeer. I just accidentally reread it all the time; whenever I see it I kind of fall into it. I read it for the first time two and a half years ago and it's what made me interested in working with special needs people, which I'm now convinced that I want to do forever. A guy who was diagnosed with classic autism as a kid, and has improved to the point that he's pretty much normal, profiles other autistic kids from his childhood school. The people he profiles are all verbal and have attained different levels of "being better"--one is in a relationship, three have jobs, one lives alone, one doesn't "look" autistic to other people. They all have coping mechanisms they use to manage their autism, some more unusual than others, and Nazeer wanders off into long explorations of why these mechanisms are necessary, what they do, and which ones he uses himself. Actually he wanders off into long explorations of everything so that, for example, we get a discussion of the word "genius" and how it's used to excuse people's bad behavior, and whether the purpose of a conversation is to express what you think. So it's not just a book about being autistic, it's a book about being human, from an autistic perspective.
Maybe because I've been reading the book I kept talking to Liz about putting up a front. She kept asking me doesn't it bother me, but I can't really imagine another way of being. When I started figuring this out a few years ago, I feel like that's when I grew up. Like three years ago: I have trouble putting words together, fast, in the right ways. And I have trouble talking or reacting in what looks like a normal way, or figuring out how to react at all. So I figured out that when I was looking for an emotion, I'd choose "excited." I couldn't buy things before because I didn't know what to do while I was waiting for the thing to be rung up. Then I figured out I could act excited about what I was buying, and it went from there.
So now I have this whole conception of my personality: young, excited, spacey, stoned, random giggling, weird questions. It doesn't involve doing things I would never do, I guess, but it does try to put them in a palatable Manic Pixie Dream Girl package because I feel like that's the only acceptable way for a girl to be weird. And also, if I seem like this cute kid who is really overwhelmed by things, then people will be more likely to make allowances for me, whereas if I was an adult who was really smart and intense and could be sort of angry and nasty, like most people, and still needed people to make allowances for me--well, then it wouldn't be cute anymore. Once I have a negative interaction with someone, I feel like they know how awful I am. I don't feel like I can be both a negative person and a person who sometimes needs to be treated like a child.
Something that really bothers me is when people think that I'm immature. I understand why, it's the obvious reaction to a person who acts like I do. But I wish people could understand but this was the only way of synthesizing my AS into a reasonably acceptable personality, and that when I started acting like a kid, that's when I grew up.
06 April, 2011
cassie ainsworth & redemption rejection
this is just some Skins gibbering, mostly character- and not plot-based, which I think is interesting in terms of ideas of covering (or "disability redemption").
me: that was me being a bitch like oh wow but fuck you style
have I mentioned that's like my favorite line ever?
Joshua: haha, it's a good moment. I dunno Jal is being kind of patronising, and though she never deserved to be the target of evil Cassie, you can see why that would hit Cassie's angry spot!
me: like, it sort of reminds me of having to act really cute to make up for being disabled
Joshua: nice interpretation
me: that's what "oh wow but fuck you" means to me.
Joshua: and like.. even more charitable to S2 Cassie than I usually am.. which is very charitable.
me: oh I mean, I don't necessarily mean that's what she means. it's just sort of what it means to me. Like, I think she just says oh wow because she always says it, and then she gets to the actual content of what she's saying, which is fuck you. But to me like oh wow is a very important line, even though people act like it's stupid and annoying, it means something really important.
me: I remember once telling Ari that I liked working with severely disabled people because lots of the people I worked with hugged everyone they met, and for some reason I'd observed this was more common in adults than kids with similar disabilities
Joshua: like they feel they have to be like that?
me: and Ari suggested that some people are very isolated and it's like "oh wow a person! I never get to interact with a person!" He said something like, "I hope the next generation of pwds can decide that they're not particularly interested in someone or they don't like them"
I think this is interesting in terms of how Cassie is introduced in the first episode. I haven't seen it in a while, but I think she hugs tony, possibly hugs sid, and then hugs abigail--"YOU'RE SO LOVELY!!!"
the plot thickens!
then obviously throughout the season there's the constant "oh wow" and manic pixie dream girl reactions to everything--coupled with starving, suicide attempts which often seem in her cases to be engineered to hurt people or cause as much trouble as possible, and occasional moments of being pretty mean or pissed off.
me: I am sort of getting this from you because I remembered when you said that Cassie doesn't really change from s1-s2, not in a deep way.
Joshua: No she really doesn't.
me: yeah so in conclusion, the line "Oh wow, but fuck you" line means a lot to me because it's almost like Cassie sort of rejecting the things that she previously did to try to "earn" people's friendship and support.
Joshua: Cassie would not mean nearly as much to me without s2 as much as I love S1 Cassie. If she'd been left at that without the contrast of S2 she'd be a standard Manic Pixie Dream and a fairly borderline offensive idealised picture of mental illness.
me: that was me being a bitch like oh wow but fuck you style
have I mentioned that's like my favorite line ever?
Joshua: haha, it's a good moment. I dunno Jal is being kind of patronising, and though she never deserved to be the target of evil Cassie, you can see why that would hit Cassie's angry spot!
me: like, it sort of reminds me of having to act really cute to make up for being disabled
Joshua: nice interpretation
me: that's what "oh wow but fuck you" means to me.
Joshua: and like.. even more charitable to S2 Cassie than I usually am.. which is very charitable.
me: oh I mean, I don't necessarily mean that's what she means. it's just sort of what it means to me. Like, I think she just says oh wow because she always says it, and then she gets to the actual content of what she's saying, which is fuck you. But to me like oh wow is a very important line, even though people act like it's stupid and annoying, it means something really important.
me: I remember once telling Ari that I liked working with severely disabled people because lots of the people I worked with hugged everyone they met, and for some reason I'd observed this was more common in adults than kids with similar disabilities
Joshua: like they feel they have to be like that?
me: and Ari suggested that some people are very isolated and it's like "oh wow a person! I never get to interact with a person!" He said something like, "I hope the next generation of pwds can decide that they're not particularly interested in someone or they don't like them"
I think this is interesting in terms of how Cassie is introduced in the first episode. I haven't seen it in a while, but I think she hugs tony, possibly hugs sid, and then hugs abigail--"YOU'RE SO LOVELY!!!"
the plot thickens!
then obviously throughout the season there's the constant "oh wow" and manic pixie dream girl reactions to everything--coupled with starving, suicide attempts which often seem in her cases to be engineered to hurt people or cause as much trouble as possible, and occasional moments of being pretty mean or pissed off.
me: I am sort of getting this from you because I remembered when you said that Cassie doesn't really change from s1-s2, not in a deep way.
Joshua: No she really doesn't.
me: yeah so in conclusion, the line "Oh wow, but fuck you" line means a lot to me because it's almost like Cassie sort of rejecting the things that she previously did to try to "earn" people's friendship and support.
Joshua: Cassie would not mean nearly as much to me without s2 as much as I love S1 Cassie. If she'd been left at that without the contrast of S2 she'd be a standard Manic Pixie Dream and a fairly borderline offensive idealised picture of mental illness.
04 April, 2011
Autism Unawareness
As you're unfortunate enough to already know, it is Autism Awareness Month. I've written a tumblr post and a facebook status encouraging "autism unawareness," which is kind of an attempt to make fun of Autism Awareness Month in as few words as possible, but I'm also wondering if Autism Unawareness is a reasonable goal, joking aside.
First off this would seem like a ridiculous thing to say. Obviously disabled people need help with things, or at least need someone to recognize they will be doing things differently, or that things feel different. This is something that non-disabled people should be "aware" of. Right?
I more or less agree with this sentiment, and I also find that when, in my Autism Unawareness posts, I have suggested that people without autism get to know people with autism without thinking about their disabilities, I am beginning to resemble a line of thinking that many disability groups use, but which the Autistic Community tends to dislike and reject. Basically this is just the idea that people with our disability are just like everyone else and should be treated as "people not disabled people" whatever the fuck that means. The problem with this attitude is that's it like: a)disability isn't important, b)disabled people should be accepted and included in society because disability isn't important, c)if God forbid some disabled person's disability is important, then...where does that leave that person? If they really, really aren't like everyone else, can they be accepted too?
However, I think it is possible to say that you should be "unaware" of someone's autism, in the sense of not having Autism Awareness about their autism, without saying that you shouldn't accommodate people or that you should ignore the important of their disability to their life and identity. I think part of being a decent person is the sensitivity to understand what other people need and experience, and what's important to them. A person who treats everyone as an individual, instead of assuming people are like them, and also has knowledge of different oppressions, knows most of what they need to know to live in a world with people who have autism. Much more than any Autism Awareness brochure could ever teach them.
And personally I think it's better that someone be 100% unaware in every way than that they have Autism Awareness, if I had to make a choice--although I'd rather they be Autism Unaware, and also be sensitive and decent.
First off this would seem like a ridiculous thing to say. Obviously disabled people need help with things, or at least need someone to recognize they will be doing things differently, or that things feel different. This is something that non-disabled people should be "aware" of. Right?
I more or less agree with this sentiment, and I also find that when, in my Autism Unawareness posts, I have suggested that people without autism get to know people with autism without thinking about their disabilities, I am beginning to resemble a line of thinking that many disability groups use, but which the Autistic Community tends to dislike and reject. Basically this is just the idea that people with our disability are just like everyone else and should be treated as "people not disabled people" whatever the fuck that means. The problem with this attitude is that's it like: a)disability isn't important, b)disabled people should be accepted and included in society because disability isn't important, c)if God forbid some disabled person's disability is important, then...where does that leave that person? If they really, really aren't like everyone else, can they be accepted too?
However, I think it is possible to say that you should be "unaware" of someone's autism, in the sense of not having Autism Awareness about their autism, without saying that you shouldn't accommodate people or that you should ignore the important of their disability to their life and identity. I think part of being a decent person is the sensitivity to understand what other people need and experience, and what's important to them. A person who treats everyone as an individual, instead of assuming people are like them, and also has knowledge of different oppressions, knows most of what they need to know to live in a world with people who have autism. Much more than any Autism Awareness brochure could ever teach them.
And personally I think it's better that someone be 100% unaware in every way than that they have Autism Awareness, if I had to make a choice--although I'd rather they be Autism Unaware, and also be sensitive and decent.
03 April, 2011
Here's the thing. I don't owe you anything.
I'm so fucking sorry for having a similar disability to yours, and writing about disability and ableism on the Internet. Sorry for being good friends with you for a few months and continuing to stay somewhat in contact for a year after that--although not very close contact, partly because we don't have much in common, but also because of your insistence that I'm a hypocrite for not helping you more.
I'm sorry your life sucks, but it's not my fault it happened nor is it my job (or within my abilities) to fix your problems.
You sent me an email telling me to "mind the gap" between my public writing and who I actually am. Actually, there is no gap, since I never made a post on my blog saying I wanted to devote energy I don't have to supporting anyone with autism who asks for my support. You are the reason that I'm stonewalling this guy with ASD who has contacted me and seems to really want to talk to someone and in all likelihood is a nice person. You are the reason I'm standoffish when people with ASD contact me on the Internet, because you have made me feel like everyone I give the time of day is going to start pulling out my insides and that's what I deserve for writing a blog.
I'm so fucking sorry for having a similar disability to yours, and writing about disability and ableism on the Internet. Sorry for being good friends with you for a few months and continuing to stay somewhat in contact for a year after that--although not very close contact, partly because we don't have much in common, but also because of your insistence that I'm a hypocrite for not helping you more.
I'm sorry your life sucks, but it's not my fault it happened nor is it my job (or within my abilities) to fix your problems.
You sent me an email telling me to "mind the gap" between my public writing and who I actually am. Actually, there is no gap, since I never made a post on my blog saying I wanted to devote energy I don't have to supporting anyone with autism who asks for my support. You are the reason that I'm stonewalling this guy with ASD who has contacted me and seems to really want to talk to someone and in all likelihood is a nice person. You are the reason I'm standoffish when people with ASD contact me on the Internet, because you have made me feel like everyone I give the time of day is going to start pulling out my insides and that's what I deserve for writing a blog.
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