I have a dear friend who really wants to be diagnosed with ASD. I find this ridiculous. I feel kind of bad about it because I turn into the least supportive friend in the universe whenever the subject gets brought up.
My friend: I think it would be really helpful because then if it makes me feel like crying when someone talks loud, I wouldn't have to feel bad about that.
Me: (badly suppressed laugh)
My friend has a bunch of more specific and less stigmatized--therefore, way more useful--disability diagnoses. I'm like, what's wrong with those? The LD/MH ones more or less add up to ASD, except for the loudness thing, but get an SPD diagnosis if it's that important to you. (My friend isn't trying to access any services that are specifically for people with ASD.)
My friend: Well, I just think it would make more sense instead of me having all these different things.
Me: Well then you already know it makes sense.
My friend: I would feel better if I was officially diagnosed.
Me: Well, okay, but it's not going to feel that official because you're going to have to go to like ten doctors because you look too normal and have too many friends.
Blah blah blah. Am I a bitch? I guess I just think it's up to my friend whether he wants to feel like an asshole for being upset by loud noises, and not only is the purpose of a diagnosis not to make you not feel like an asshole, but in my experience it's pretty much the opposite.
A bunch of people on tumblr were talking about how professionals tend to "treat" people with ADHD basically by telling them to do things that are really hard for someone with ADHD to do. As far as I can tell the same goes for autism. Plenty of non-disabled people in my life, who understand that I have autism as a fact, can think of nothing more offensive than taking my word for it when I say, "this is REALLY hard for me" or "this is making me REALLY upset" or "could you do me a favor by doing this, which would help me do something the way I need to do it, because I can't do it the other way?"
Stock answers:
"Wait, why would that be hard?"
(thinks I am joking about being upset)
"I can't believe you would ask me to do that!"
"Well, why don't you just do this? Why not?"
Seriously guys. Autism, or whatever, is not a word that helps. Having a real disability does not in any way give you the right to feel like anything other than a bad person when you can't do something. It definitely doesn't give you the right to draw your own conclusions about what you need or what is the right way to react to a problem.
I admit that I am kind of a shit friend when it comes to this, because I hate everyone and I feel like the only thing you can do is feel okay yourself, because most people don't want you to feel okay.
Showing posts with label sensory issues. Show all posts
Showing posts with label sensory issues. Show all posts
30 November, 2011
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.
25 January, 2011
stuff I wish I'd known
being in 9th grade and being cast in this play as a character who didn't exist--the teacher who was directing planned to divide up lines between my character and another character. During vocal warmups every cast member had to say one of their lines and we would all repeat it, but this made me feel awful because I didn't know which lines were mine, because we hadn't gotten to blocking that scene yet. I didn't want to steal someone else's lines. I dreaded warmups so much, because of this one moment, that I tended to skip rehearsals and go to the art room and hang out with Joan. Eventually I got caught, no real harm done; I explained to the teacher several years later, once I could talk to her.
being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.
same with toilets (always).
being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.
why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.
I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.
But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.
being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.
same with toilets (always).
being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.
why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.
I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.
But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.
08 September, 2010
sound values
I wanted to write about my sensory problems because the way I experience them is pretty different from the conventional characterization (which I understand as: "people with sensory problems react to sensory information as if it's louder/brighter/harder, or quieter/duller/softer, than it actually is"). My sensory problems resemble my synesthesia, or what I somewhat inaccurately call my synesthesia, since it's not as simple as sound=color. For me most sounds are gray and white, or sometimes yellow and brown, and the color isn't as striking as shade, patterns, and texture. The image of the sound isn't something I literally see; I just know what it is.
My negative reactions to sound are caused by the same thing--multiple values. It's not just that sounds are loud, but that they're scary or embarrassing. This means that I don't necessary realize my feelings are about sound. When I was little (just kidding, always), I was scared of flushing the toilet, which in retrospect I understand was about the loud noise, but at the time I just had a vague idea that toilets were scary.
I recently realized that, between the ages of ten and about sixteen, I could probably have been diagnosed with OCD. When I was in a place that had a loud noise (an irregular noise that looks like gravel, like a crowd of people talking or pop music, not a solid noise like a very loud bell) and where I was fully in motion, I could easily get into a state where I was forced to force myself (FTFM) to think about the following things:
1. being caught lying, plagiarizing, or being insincere--for example, once I kept thinking about sending White Stripes lyrics to my friend who liked the White Stripes, and claiming that I had written them though he was bound to recognize where they were from. The White Stripes were actually a whole area of obsession for me when I was about fourteen. I didn't listen to them much--too emotionally taxing--but I associated them with this friend, who I had such a crush on I didn't exactly want to be around him, ever, so I had that same kind of crush on Meg White and would find myself FTFM to think about her, which brings me to
2. having sex with people, having a crush on them, or dating them. I should mention that this wasn't the same as having sincere fantasies, like you would have anywhere. The specific sex- and romance-related thoughts I had in loud places where I was moving often weren't even about people I was attracted to. See, I had this vague feeling that when I was in loud environments and was standing up and moving, other people could read my thoughts. I wasn't even thinking about any particular person's reaction to reading, but just generally becoming so consumed by the possibility that someone could read my thoughts that I would find myself compulsively thinking any thoughts that would be embarrassing. I would think about having sex with or dating elderly teachers, or characters from the Harry Potter books (I wouldn't think about a fandom that was more obscure, because the average person might not realize my thought was about a fictional character, and therefore wouldn't know my thought was embarrassing). Since I also thought I was super unattractive when this stuff was at its peak (when I was thirteen and fourteen), I could also embarrass myself just by mentally referring to any guy I knew as "my boyfriend," since I felt I didn't have the right to have a boyfriend and it was horrifying to even project that onto any guy.
When I was in seventh grade, my parents made me take tae kwon do lessons. My lesson always started with "conditioning," which meant that I had to run in place, holding weights, while my teacher played loud pop music on the radio. This was probably the most terrible thing that happened to me all week; it was even worse than walking through the loud crowded halls of my school, because at school I could make things slightly less awful by touching walls or briefly freezing in place or sticking out my arms stiffly, and I could shorten my journey through the halls by walking quicker. Quite a lot of my seventh-grade energy was devoted to memorizing or writing poems that were very rhythmic so I could recite them in my head when I was doing conditioning and distract myself from the thoughts. Even this didn't make the experience painless, just a little more bearable.
Although I guess I didn't think other people experienced these compulsive thoughts, I was so used to them that it didn't occur to me to ever tell other people about them. I don't know if I thought that conditioning was supposed to be as horrible as it was--I realized about a month ago, when I started writing this post, that maybe if I had explained to anyone how I felt about it, they wouldn't have made me do conditioning or at least would have turned off the music.
Even though sound and motion, or just loud sound, still makes me feel embarrassed, I don't have that much compulsion going on anymore. Which I think is normal--I know that for people with Tourette Syndrome, their symptoms are worst in their early teens and then often fade away. However, I do want to explain this other emotional thing that seems to be tied into all the noise and movement and compulsion stuff.
I don't like being around people I really like. I don't like hearing their voices, seeing them or having them see me, or having physical contact with them. If I have always had to see and hear the person, of course I am inured to it, but the idea of meeting an Internet friend, someone I haven't seen in a long time, or a celebrity is completely unbearable if I like the person very much. I remember once, when I was fifteen, physically running away from my friend who was trying to introduce me to her dad, a children's book writer of whom I had been extremely fond all my life. The idea of entering a contest to meet your favorite actor or musician is the weirdest thing I have ever heard. Why would you want to torture yourself that way?
It's different with Internet or long-distance friends in that there is so much more of a benefit to actually meeting them and getting used to their presence, so you can hang out more in the future. So my solution is just to try to train myself by doing more and more upsetting things, like looking at pictures of the person and talking to them on the phone, and then refraining from looking at the person or touching them when I first meet them. When I was trying to explain to an Internet friend why I wanted to meet him somewhere where I could sit down on the ground, I linked him to this MOM-NOS post, which describes a young ASD boy who gets to meet his favorite country singer. Despite loving the singer, the boy initially refuses to go meet him, and responds flatly and refuses to look at him until he gets used to the singer's physical presence. This really struck a chord with me and is really one of the only examples I have seen of a person like me who just has fundamentally different/crossed values. Really good things are just naturally somewhat painful for me.
My negative reactions to sound are caused by the same thing--multiple values. It's not just that sounds are loud, but that they're scary or embarrassing. This means that I don't necessary realize my feelings are about sound. When I was little (just kidding, always), I was scared of flushing the toilet, which in retrospect I understand was about the loud noise, but at the time I just had a vague idea that toilets were scary.
I recently realized that, between the ages of ten and about sixteen, I could probably have been diagnosed with OCD. When I was in a place that had a loud noise (an irregular noise that looks like gravel, like a crowd of people talking or pop music, not a solid noise like a very loud bell) and where I was fully in motion, I could easily get into a state where I was forced to force myself (FTFM) to think about the following things:
1. being caught lying, plagiarizing, or being insincere--for example, once I kept thinking about sending White Stripes lyrics to my friend who liked the White Stripes, and claiming that I had written them though he was bound to recognize where they were from. The White Stripes were actually a whole area of obsession for me when I was about fourteen. I didn't listen to them much--too emotionally taxing--but I associated them with this friend, who I had such a crush on I didn't exactly want to be around him, ever, so I had that same kind of crush on Meg White and would find myself FTFM to think about her, which brings me to
2. having sex with people, having a crush on them, or dating them. I should mention that this wasn't the same as having sincere fantasies, like you would have anywhere. The specific sex- and romance-related thoughts I had in loud places where I was moving often weren't even about people I was attracted to. See, I had this vague feeling that when I was in loud environments and was standing up and moving, other people could read my thoughts. I wasn't even thinking about any particular person's reaction to reading, but just generally becoming so consumed by the possibility that someone could read my thoughts that I would find myself compulsively thinking any thoughts that would be embarrassing. I would think about having sex with or dating elderly teachers, or characters from the Harry Potter books (I wouldn't think about a fandom that was more obscure, because the average person might not realize my thought was about a fictional character, and therefore wouldn't know my thought was embarrassing). Since I also thought I was super unattractive when this stuff was at its peak (when I was thirteen and fourteen), I could also embarrass myself just by mentally referring to any guy I knew as "my boyfriend," since I felt I didn't have the right to have a boyfriend and it was horrifying to even project that onto any guy.
When I was in seventh grade, my parents made me take tae kwon do lessons. My lesson always started with "conditioning," which meant that I had to run in place, holding weights, while my teacher played loud pop music on the radio. This was probably the most terrible thing that happened to me all week; it was even worse than walking through the loud crowded halls of my school, because at school I could make things slightly less awful by touching walls or briefly freezing in place or sticking out my arms stiffly, and I could shorten my journey through the halls by walking quicker. Quite a lot of my seventh-grade energy was devoted to memorizing or writing poems that were very rhythmic so I could recite them in my head when I was doing conditioning and distract myself from the thoughts. Even this didn't make the experience painless, just a little more bearable.
Although I guess I didn't think other people experienced these compulsive thoughts, I was so used to them that it didn't occur to me to ever tell other people about them. I don't know if I thought that conditioning was supposed to be as horrible as it was--I realized about a month ago, when I started writing this post, that maybe if I had explained to anyone how I felt about it, they wouldn't have made me do conditioning or at least would have turned off the music.
Even though sound and motion, or just loud sound, still makes me feel embarrassed, I don't have that much compulsion going on anymore. Which I think is normal--I know that for people with Tourette Syndrome, their symptoms are worst in their early teens and then often fade away. However, I do want to explain this other emotional thing that seems to be tied into all the noise and movement and compulsion stuff.
I don't like being around people I really like. I don't like hearing their voices, seeing them or having them see me, or having physical contact with them. If I have always had to see and hear the person, of course I am inured to it, but the idea of meeting an Internet friend, someone I haven't seen in a long time, or a celebrity is completely unbearable if I like the person very much. I remember once, when I was fifteen, physically running away from my friend who was trying to introduce me to her dad, a children's book writer of whom I had been extremely fond all my life. The idea of entering a contest to meet your favorite actor or musician is the weirdest thing I have ever heard. Why would you want to torture yourself that way?
It's different with Internet or long-distance friends in that there is so much more of a benefit to actually meeting them and getting used to their presence, so you can hang out more in the future. So my solution is just to try to train myself by doing more and more upsetting things, like looking at pictures of the person and talking to them on the phone, and then refraining from looking at the person or touching them when I first meet them. When I was trying to explain to an Internet friend why I wanted to meet him somewhere where I could sit down on the ground, I linked him to this MOM-NOS post, which describes a young ASD boy who gets to meet his favorite country singer. Despite loving the singer, the boy initially refuses to go meet him, and responds flatly and refuses to look at him until he gets used to the singer's physical presence. This really struck a chord with me and is really one of the only examples I have seen of a person like me who just has fundamentally different/crossed values. Really good things are just naturally somewhat painful for me.
06 June, 2010
Hugging problems
Recently I was thinking about hugging and remembering what physical affection was like at the ASD school where I interned last summer.
I remember the last day I was there I asked my favorite kid, R.D., if I could hug him. He said yes, but when I put my arms around him he didn't put his arms around me. I remember that this was something I did at his age, and it was because I saw hugs as an opportunity to get my whole body squeezed tightly. But I also wonder if, given the culture of the school, R.D. felt that he had the right to say he didn't want to hug.
There was a lot of hugging going on. Some kids would ask for tickling or hugging as their reward for doing work. There was also a lot of teachers hugging, tickling, and grabbing kids without being asked--and the way I feel about this is complicated. I mean, it's inarguable that people with sensory issues need to learn to put up with annoying and borderline painful sensations at least some of the time. And I also think it's the case that some people who don't like physical contact will come to like it better if they put up with it for a while. But...I mean, I already feel kind of gross writing those sentences, and it makes me nervous to think of anyone taking that idea and running with it--the idea that forcing physical affection on ASD kids is good for them.
There was a boy named J.S. in R.D.'s class, who I remember as being sort of prim and serious. He would occasionally become smiley about something he really liked, such as his baby sister, but usually he looked pretty dour and complained about everything. The teachers would always grab, chase, and tickle J.S. and I'm not sure how I feel about that. J.S. would giggle so I think maybe he was learning that these things can be fun. But he never looked like he was luxuriating in being grabbed or tickled, like kids who had asked for it; his smile was always kind of wincing, his body was always stiff.
J.S. embodies how conflicted I feel about the benefits and drawbacks of being aggressively physically affectionate with ASD kids. But there was a third kind of affection at that school, and that was affection that was not supposed to happen. Twice, I remember R.D., in some sort of squeaky, wordy paroxysm, throwing an arm around me and squeezing me, to which he was told, "Keep your hands to yourself" or "Don't be silly." I've also mentioned a few times when kids would take the initiative in making a joke or game with an authority figure they liked, and be reprimanded for misbehavior (for example, turning off the lights in a room). This isn't ambiguous to me at all, it was a flat-out wrong way to do things. If R.D. wasn't allowed to impulsively hug someone else, then his teachers shouldn't be allowed to do that to him. "Can you be flexible?" was a constant question when kids who'd been expecting one thing had to accept a different result, and the only right answer was "Yes." But the teachers didn't show flexibility when a kid had an idea for how to do something, even something as small as an affectionate interaction.
There's a reason this makes me very upset, and the reason is abuse. I think I've linked multiple times to Dave Hingsburger's post The Good Girl, about a teenager with Down Syndrome who explained that if anyone abused her, she'd "understand" and wouldn't tell anyone because she wouldn't want her abuser to get in trouble. I think the attitudes at R.D. and J.S.'s school are perfectly suited to screwing up kids just that way.
I felt gross saying that sometimes having to put up with uncomfortable physical affection can be good for a kid. But at least I felt gross, at least I'm speaking from my experience as an ASD person, and at least I think it's an incredibly complex and difficult issue. The teachers at the school did not seem to think this was a complex issue, which is horribly dangerous. It makes me very nervous to think of J.S. getting older and eventually ceasing to complain about discomfort. It makes me nervous to think how R.D. will handle friendships and relationships as an adult, when he's been taught to accept contact he doesn't like and discouraged from initiating the kind of contact he does like.
But the prospect of unequal relationships seems almost jolly when compared to the possibility that one of these kids could be abused by an adult. Being trained to accept physical contact that you don't like, and being discouraged from complaining, being "inflexible," and expressing unpopular opinions, are things that could set up a child to not report being abused.
The connotations of this are horrible. They are connotations that exist in many of the attitudes at that school. Stimming is bad because it looks weird and can lead to discrimination--stimming is the enemy, not discrimination. Special interests are bad because they aren't considered normal--special interests are the enemy, not illogical constructions of what is normal. And, somehow, people who could hurt these kids are not as big an enemy as the kids themselves; teaching them power and independence is not worth it if it would mean letting them say, "I don't want a hug right now."
I remember the last day I was there I asked my favorite kid, R.D., if I could hug him. He said yes, but when I put my arms around him he didn't put his arms around me. I remember that this was something I did at his age, and it was because I saw hugs as an opportunity to get my whole body squeezed tightly. But I also wonder if, given the culture of the school, R.D. felt that he had the right to say he didn't want to hug.
There was a lot of hugging going on. Some kids would ask for tickling or hugging as their reward for doing work. There was also a lot of teachers hugging, tickling, and grabbing kids without being asked--and the way I feel about this is complicated. I mean, it's inarguable that people with sensory issues need to learn to put up with annoying and borderline painful sensations at least some of the time. And I also think it's the case that some people who don't like physical contact will come to like it better if they put up with it for a while. But...I mean, I already feel kind of gross writing those sentences, and it makes me nervous to think of anyone taking that idea and running with it--the idea that forcing physical affection on ASD kids is good for them.
There was a boy named J.S. in R.D.'s class, who I remember as being sort of prim and serious. He would occasionally become smiley about something he really liked, such as his baby sister, but usually he looked pretty dour and complained about everything. The teachers would always grab, chase, and tickle J.S. and I'm not sure how I feel about that. J.S. would giggle so I think maybe he was learning that these things can be fun. But he never looked like he was luxuriating in being grabbed or tickled, like kids who had asked for it; his smile was always kind of wincing, his body was always stiff.
J.S. embodies how conflicted I feel about the benefits and drawbacks of being aggressively physically affectionate with ASD kids. But there was a third kind of affection at that school, and that was affection that was not supposed to happen. Twice, I remember R.D., in some sort of squeaky, wordy paroxysm, throwing an arm around me and squeezing me, to which he was told, "Keep your hands to yourself" or "Don't be silly." I've also mentioned a few times when kids would take the initiative in making a joke or game with an authority figure they liked, and be reprimanded for misbehavior (for example, turning off the lights in a room). This isn't ambiguous to me at all, it was a flat-out wrong way to do things. If R.D. wasn't allowed to impulsively hug someone else, then his teachers shouldn't be allowed to do that to him. "Can you be flexible?" was a constant question when kids who'd been expecting one thing had to accept a different result, and the only right answer was "Yes." But the teachers didn't show flexibility when a kid had an idea for how to do something, even something as small as an affectionate interaction.
There's a reason this makes me very upset, and the reason is abuse. I think I've linked multiple times to Dave Hingsburger's post The Good Girl, about a teenager with Down Syndrome who explained that if anyone abused her, she'd "understand" and wouldn't tell anyone because she wouldn't want her abuser to get in trouble. I think the attitudes at R.D. and J.S.'s school are perfectly suited to screwing up kids just that way.
I felt gross saying that sometimes having to put up with uncomfortable physical affection can be good for a kid. But at least I felt gross, at least I'm speaking from my experience as an ASD person, and at least I think it's an incredibly complex and difficult issue. The teachers at the school did not seem to think this was a complex issue, which is horribly dangerous. It makes me very nervous to think of J.S. getting older and eventually ceasing to complain about discomfort. It makes me nervous to think how R.D. will handle friendships and relationships as an adult, when he's been taught to accept contact he doesn't like and discouraged from initiating the kind of contact he does like.
But the prospect of unequal relationships seems almost jolly when compared to the possibility that one of these kids could be abused by an adult. Being trained to accept physical contact that you don't like, and being discouraged from complaining, being "inflexible," and expressing unpopular opinions, are things that could set up a child to not report being abused.
The connotations of this are horrible. They are connotations that exist in many of the attitudes at that school. Stimming is bad because it looks weird and can lead to discrimination--stimming is the enemy, not discrimination. Special interests are bad because they aren't considered normal--special interests are the enemy, not illogical constructions of what is normal. And, somehow, people who could hurt these kids are not as big an enemy as the kids themselves; teaching them power and independence is not worth it if it would mean letting them say, "I don't want a hug right now."
02 May, 2010
Church at home
When I was a kid I was afraid of the sound of flushing the toilet. I'd run out of the bathroom as fast as possible, without washing my hands. When I got older I was expected to wash my face and use an electric toothbrush but the electric toothbrush especially upset me too much.
Normally I'm okay. But the worse things get, the less I can handle the sound and feel of the electric toothbrush. Also, I find church to be very scary, as I've mentioned several times, so the worse things get, the more I become this little unhygienic person skulking around my dorm on Sunday morning, with very dirty hair and very dirty teeth (or, possibly, trying to get into the bathroom when no one else is there so I can jump around while brushing my teeth to distract myself from the toothbrush overload).
Oh right! So, because of not going to church, I was thinking maybe I'd try to write religious stuff here on Sunday. I tend to think that I was better on God stuff when I was thinking about it in on my own instead of feeling that it had to be about other people, or specifically about social structures. I almost feel like developing the idea that I had to go to church is one of the biggest mistakes I've ever made. I can probably count on all my digits the amount of times I've gone to church since I made that decision two years ago, so it's just a way of making myself feel like a failure because church is hard for me.
So:
I’m glad I’m Christian because other religions don't have room for what a major shit I am.
I believe certain things about God. Specifically: I am NOT good enough. Something needs to take me over. Terribly. Always.
It’s not about sitting around and whining about how I’m not good enough. I think of it as being a lot like disability. My sin is not a tragedy. It’s also not nothing. Something has to be done about it. God is my assistive technology.
Normally I'm okay. But the worse things get, the less I can handle the sound and feel of the electric toothbrush. Also, I find church to be very scary, as I've mentioned several times, so the worse things get, the more I become this little unhygienic person skulking around my dorm on Sunday morning, with very dirty hair and very dirty teeth (or, possibly, trying to get into the bathroom when no one else is there so I can jump around while brushing my teeth to distract myself from the toothbrush overload).
Oh right! So, because of not going to church, I was thinking maybe I'd try to write religious stuff here on Sunday. I tend to think that I was better on God stuff when I was thinking about it in on my own instead of feeling that it had to be about other people, or specifically about social structures. I almost feel like developing the idea that I had to go to church is one of the biggest mistakes I've ever made. I can probably count on all my digits the amount of times I've gone to church since I made that decision two years ago, so it's just a way of making myself feel like a failure because church is hard for me.
So:
I’m glad I’m Christian because other religions don't have room for what a major shit I am.
I believe certain things about God. Specifically: I am NOT good enough. Something needs to take me over. Terribly. Always.
It’s not about sitting around and whining about how I’m not good enough. I think of it as being a lot like disability. My sin is not a tragedy. It’s also not nothing. Something has to be done about it. God is my assistive technology.
10 February, 2010
Unnecessary things
Dave Hingsburger made a really good post about how he wanted a book that he couldn't reach from his wheelchair, and the bookstore employee got annoyed because he was picky about which edition of the book he wanted her to reach for him. I feel like it's good not to feel that you only deserve things that are necessary. Especially because it's hard to tell what's necessary.
I have ASD. I also probably have some not-worth-diagnosing condition that makes me feel faint and on a few occasions has led to me losing the ability to see. I guess this is called "chronic low blood pressure" or something. This summer, my vision almost completely took its leave of me while I was in line at a grocery store. I felt confident explaining to the people around me that I had to leave my food on the counter, go outside, and sit down. (It didn't hurt that on my way outside I tried to walk through a glass door.)
Mostly this doesn't affect me, because I leave situations where I am getting faint, or avoid getting into them in the first place. ASD doesn't always affect me badly either. But the other day, at work, I was told to do a different job than the one I had been hired to do, one which was very taxing for me in terms of sensory issues and Feeling Faint. Although I've never thought about Feeling Faint, or thought much about ASD, when applying for part-time jobs in the dining hall, it would never have occurred to me to apply to do this other job. It's not something I have a word for, I just find several aspects of it to be very difficult over long periods of time.
Anyway, I didn't lose any vision while I was working there, and my Feeling Faint is not really a severe or chronic enough problem for me to be able to explain. I doubt the Disability Services office or anyone would advocate for my right to have a job that isn't upsetting to me for sensory reasons. However, I'll be very upset if I'm pressured into doing that job again, and I will make an effort to insist that I be allowed to do the job I was hired to do.
The problem is that it isn't a necessity for me to avoid anything that might be difficult for me on a sensory level, or a Feeling Faint level. So I don't feel that I deserve respect and help, objectively, the way I did when my vision went out. But the truth is that if I'm forced to remain in a difficult situation for hours, it is really bad--so in the long run, I think it becomes a necessity that my impairments be acknowledged and accommodated.
Also, I don't think it's even going far enough to just admit that some apparently unnecessary things can actually be necessary or become necessary. What about things that aren't necessary like Dave Hingsburger's book? Nothing horrible will happen to him if he has to have an ugly cover instead of the cover he likes--but shouldn't disabled people be able to ask for help that will give us the same range of opportunities as a nondisabled person?
To continue pelting you with examples, I'm afraid to meet with professors when I'm having trouble in class, because I'm concerned that my communication and body language might cause them to resent me and give me a worse grade. Not meeting with professors isn't a huge deal; I always get by. But if I could meet with professors, I could do better. If I was as smart as I am, but didn't have ASD, I could do better in school. I'm going to try to meet with professors and advocate for myself if they make up stories about who I am. I deserve to do as well in school as a regular person can.
I have ASD. I also probably have some not-worth-diagnosing condition that makes me feel faint and on a few occasions has led to me losing the ability to see. I guess this is called "chronic low blood pressure" or something. This summer, my vision almost completely took its leave of me while I was in line at a grocery store. I felt confident explaining to the people around me that I had to leave my food on the counter, go outside, and sit down. (It didn't hurt that on my way outside I tried to walk through a glass door.)
Mostly this doesn't affect me, because I leave situations where I am getting faint, or avoid getting into them in the first place. ASD doesn't always affect me badly either. But the other day, at work, I was told to do a different job than the one I had been hired to do, one which was very taxing for me in terms of sensory issues and Feeling Faint. Although I've never thought about Feeling Faint, or thought much about ASD, when applying for part-time jobs in the dining hall, it would never have occurred to me to apply to do this other job. It's not something I have a word for, I just find several aspects of it to be very difficult over long periods of time.
Anyway, I didn't lose any vision while I was working there, and my Feeling Faint is not really a severe or chronic enough problem for me to be able to explain. I doubt the Disability Services office or anyone would advocate for my right to have a job that isn't upsetting to me for sensory reasons. However, I'll be very upset if I'm pressured into doing that job again, and I will make an effort to insist that I be allowed to do the job I was hired to do.
The problem is that it isn't a necessity for me to avoid anything that might be difficult for me on a sensory level, or a Feeling Faint level. So I don't feel that I deserve respect and help, objectively, the way I did when my vision went out. But the truth is that if I'm forced to remain in a difficult situation for hours, it is really bad--so in the long run, I think it becomes a necessity that my impairments be acknowledged and accommodated.
Also, I don't think it's even going far enough to just admit that some apparently unnecessary things can actually be necessary or become necessary. What about things that aren't necessary like Dave Hingsburger's book? Nothing horrible will happen to him if he has to have an ugly cover instead of the cover he likes--but shouldn't disabled people be able to ask for help that will give us the same range of opportunities as a nondisabled person?
To continue pelting you with examples, I'm afraid to meet with professors when I'm having trouble in class, because I'm concerned that my communication and body language might cause them to resent me and give me a worse grade. Not meeting with professors isn't a huge deal; I always get by. But if I could meet with professors, I could do better. If I was as smart as I am, but didn't have ASD, I could do better in school. I'm going to try to meet with professors and advocate for myself if they make up stories about who I am. I deserve to do as well in school as a regular person can.
25 October, 2009
Gaslighting
Gaslighting is when you try to keep a person from standing up for herself by making her doubt her own perception of things. The term comes from a 1938 play in which a guy lives below the apartment of a woman he murdered for her jewels. Every night, he goes into her apartment to look for the jewels, causing the lights in his own apartment to dim. His wife notices this, and wonders where he goes every night, but the guy tells her that she's just imagining the lights dimming, and that it's weird for her to ask him where he's going. He almost succeeds in convincing her that she's mentally ill. Not all gaslighting is so calculated, of course; for example, Don gaslighted Betty on Mad Men when he wouldn't admit to cheating on her. He wasn't intending to psychologically torture her, but he did take advantage of her internalized sexism and history of emotional problems in the hopes that she wouldn't make him face up to something she knew he'd done.
I used female pronouns in my definition because it makes grammar easier, and also because gaslighting is easier to do to a woman. Women apologize more, are more self-deprecating, try harder to adjust ourselves to other people's needs. As a result, it is easier to convince a woman that her perception of something is wrong.
Gaslighting is a confusing phenomenon because it's hard to think about how to prevent it. I don't really want to live in a world where everyone assumes they're right all the time. The world is too much like that already. But as things are, the people who are confident that their perceptions are the right ones have such an easy time manipulating people who don't. That isn't good.
I guess the solution to gaslighting is to teach confidence to open-minded people. Being self-deprecating and willing to suspend disbelief are good qualities but we live in a world where they're turned into weaknesses. I guess we have to find some kind of middle ground where people are open to the idea that they're wrong, but also aware that someone might be fucking with them.
Obviously, I'm bringing up the issue of gaslighting because it is such a big issue for me, and I think developmentally disabled people in general. In ABA schools, they mark kids down for "non-compliance," even if non-compliance consists of a kid wanting to stim, or being too tired to do work, or arguing with a teacher's idea of the "right" way to say something. People in workshop and group home settings spend their whole life being told not to complain, to be quiet, to be pleasant. And this does create a lot of nice people, but it also means that, for example, developmentally disabled people often don't speak up if they are sexually abused. And for ASD people, I think it can lead to meltdowns because we are encouraged not to express discomfort so we hold it in as long as we can.
I mentioned in a previous post that pretty much every time I've had something medically wrong with me, it's taken a while to be diagnosed because the symptom has been pain and I've been trained since I was a kid not to express pain. When I was a kid, getting my hair brushed, washed, blow-dried, or cut caused me incredible discomfort and I would cry and yell and complain, but I was always told that I was overreacting and it wasn't really that bad. So I figured it wasn't. So when I had appendicitis I figured it wasn't really that bad. And so on.
This is interesting because in terms of the appendicitis I was, on the surface, gaslighting myself. And also, the reason I wanted to write this post is because someone posted in a disability LiveJournal community about how their mom said they were "eating oatmeal over and over" and they wanted to know if they were actually eating an abnormal amount of oatmeal. A community member, presumably visibly disabled, commented asking what this had to do with disability and why the person didn't make their own decisions, since they were an adult. Well, the reason I perceived the post as disability-related, and I assume the reason the OP chose to post it in that community, is that the OP has an ASD. For a person with ASD, "over and over" can be a trigger that makes the person think, "Shit! I'm doing something that is a symptom of ASD and therefore is wrong! I better change what I'm doing to something normal!" I identified with this a lot because when my mom tells me I'm doing something "obsessive" or I'm "cycling," I react with quite a bit of anger and shame, a lot more than an ordinary person would if their mom told them the same thing. And then in the future I feel bad about doing the thing my mom said was "obsessive."
So here I'm also gaslighting myself, right? As is the poster. It's just an innocent comment about oatmeal, right?
Even if it's not, even if their mom is intentionally trying to fuck with them because she knows how they'll react as a person with ASD--well, you can't really tell the difference, can you? If some person tells me I'm eating oatmeal over and over, and they aren't thinking about my history at all, I'm just gaslighting myself when this makes me feel sort of embarrassed and apologetic and forced into submission because I'm an Abnormal Person and as a Normal Person they know what I should be doing. It's my fault, sort of.
But it's only sort of my fault, because it's privilege. Privilege is invisible but everyone keeps it going, conscious or not. And it's usually only the people who are negatively affected who have to be conscious. The other people can be like, "Hey man, what are you freaking out about?" Which, in this case, ironically amounts to gaslighting about gaslighting.
I used female pronouns in my definition because it makes grammar easier, and also because gaslighting is easier to do to a woman. Women apologize more, are more self-deprecating, try harder to adjust ourselves to other people's needs. As a result, it is easier to convince a woman that her perception of something is wrong.
Gaslighting is a confusing phenomenon because it's hard to think about how to prevent it. I don't really want to live in a world where everyone assumes they're right all the time. The world is too much like that already. But as things are, the people who are confident that their perceptions are the right ones have such an easy time manipulating people who don't. That isn't good.
I guess the solution to gaslighting is to teach confidence to open-minded people. Being self-deprecating and willing to suspend disbelief are good qualities but we live in a world where they're turned into weaknesses. I guess we have to find some kind of middle ground where people are open to the idea that they're wrong, but also aware that someone might be fucking with them.
Obviously, I'm bringing up the issue of gaslighting because it is such a big issue for me, and I think developmentally disabled people in general. In ABA schools, they mark kids down for "non-compliance," even if non-compliance consists of a kid wanting to stim, or being too tired to do work, or arguing with a teacher's idea of the "right" way to say something. People in workshop and group home settings spend their whole life being told not to complain, to be quiet, to be pleasant. And this does create a lot of nice people, but it also means that, for example, developmentally disabled people often don't speak up if they are sexually abused. And for ASD people, I think it can lead to meltdowns because we are encouraged not to express discomfort so we hold it in as long as we can.
I mentioned in a previous post that pretty much every time I've had something medically wrong with me, it's taken a while to be diagnosed because the symptom has been pain and I've been trained since I was a kid not to express pain. When I was a kid, getting my hair brushed, washed, blow-dried, or cut caused me incredible discomfort and I would cry and yell and complain, but I was always told that I was overreacting and it wasn't really that bad. So I figured it wasn't. So when I had appendicitis I figured it wasn't really that bad. And so on.
This is interesting because in terms of the appendicitis I was, on the surface, gaslighting myself. And also, the reason I wanted to write this post is because someone posted in a disability LiveJournal community about how their mom said they were "eating oatmeal over and over" and they wanted to know if they were actually eating an abnormal amount of oatmeal. A community member, presumably visibly disabled, commented asking what this had to do with disability and why the person didn't make their own decisions, since they were an adult. Well, the reason I perceived the post as disability-related, and I assume the reason the OP chose to post it in that community, is that the OP has an ASD. For a person with ASD, "over and over" can be a trigger that makes the person think, "Shit! I'm doing something that is a symptom of ASD and therefore is wrong! I better change what I'm doing to something normal!" I identified with this a lot because when my mom tells me I'm doing something "obsessive" or I'm "cycling," I react with quite a bit of anger and shame, a lot more than an ordinary person would if their mom told them the same thing. And then in the future I feel bad about doing the thing my mom said was "obsessive."
So here I'm also gaslighting myself, right? As is the poster. It's just an innocent comment about oatmeal, right?
Even if it's not, even if their mom is intentionally trying to fuck with them because she knows how they'll react as a person with ASD--well, you can't really tell the difference, can you? If some person tells me I'm eating oatmeal over and over, and they aren't thinking about my history at all, I'm just gaslighting myself when this makes me feel sort of embarrassed and apologetic and forced into submission because I'm an Abnormal Person and as a Normal Person they know what I should be doing. It's my fault, sort of.
But it's only sort of my fault, because it's privilege. Privilege is invisible but everyone keeps it going, conscious or not. And it's usually only the people who are negatively affected who have to be conscious. The other people can be like, "Hey man, what are you freaking out about?" Which, in this case, ironically amounts to gaslighting about gaslighting.
Subscribe to:
Posts (Atom)
