Playing Cards at Boston Children's Hospital by Lisa Blumberg was linked in a blog I was looking at and it's a really good and important piece. It made me really upset to read it.
It was striking to me how much I related as an Autistic person to the professional attitudes that Blumberg experienced, since she has cerebral palsy and no mind disabilities. I'm kind of leery about doing this because I don't want to give the impression of appropriating someone else's very different experience, but I want to quote some of the lines that really resonated with me:
Once Matty [her physical therapist] watched me walk and said, "You don't concentrate. You just go--like you think you walk normally or something."
I tried to explain it to my mother: "They exalt form over substance." I didn't have the right words...
When Blumberg was in her first year of college, a doctor spent months pressuring her and her mother to agree to a surgery that involved cutting into Blumberg's muscles, even though Blumberg really, really didn't want it. The doctor constantly told them that if she didn't get the surgery, her hips would dislocate by the time she was forty (then he kept lowering the age at which this would supposedly happen). As an adult, she found out that there was no way this would have happened before she was very old.
By Monday, after five days without movement, both my legs were sticks. I screamed when Matty touched them. She sat me up. I fell over. "You make me sick," I said to Pan later. That was obviously an understatement...Matty said I was being terrible to Dr. Pan. She said he knew I didn't like him.
Nine days after surgery, I went home and that was when the fun really began. There was a problem with pain management. The problem was that Pan was not interested. He said his concern was with correcting my leg, not with how I felt while he was doing it. Both my legs now hurt everywhere, but he had only cut one muscle on one leg, so I could not blame all this on him, no indeed. Anyway, I was just faking.
... Throughout July and August, while the pain turned into aches, I had therapy. My hamstrings and some of my hip muscles were doing weird things. I couldn't straighten out my legs the way I used to. My left leg--the leg that was supposed to be untouched--was turning in.
At first Matty pretended things had been this way all along but then finally said, "When you cut a muscle, every other muscle reacts. When you do something to one leg, the other changes."
No one had told me. I had not been playing with a full deck.
"Why did he do it?" I screamed.
"If you don't take risks, you don't do anything," Matty said crossly. "It's not like you had a great walk to begin with."
So it was spoken, so it was said. I had a disability to begin with. It was all right for other people to take risks with me.
...By 1979 I had oozed into the disability rights movement and for the first time met other adults with disabilities. Many of these people had been "treated" at a local pediatric orthopedic hospital I'll call Newcastle, since this article really isn't about Newcastle. The first thing I heard about was the amphitheater where the kids were examined in front of students and whoever. This was a new one on me.
Then I heard about the surgery--lots of it. As someone said, "surgery was all there was." Three, five, seven, eighteen operations on one person. Sometimes one surgery would be successful and then, well, the next one would be sort of a mistake.
I asked Bette what the hell was going on. She said that kids at Newcastle were looked at from an orthopedic perspective but did not necessarily get rehab. For kids who had lasting disabilities rather than, say, a club foot, that was a problem. People did not understand that. Even most primary physicians did not recognize this...It occurred to me that if your focus is on a fix, working with individuals with lifelong disabilities must be aggravating--aggravating enough to make you swear or become a gambling man.
(emphasis mine)
22 November, 2010
20 November, 2010
how an autism spectrum disability affects my life now
[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.
FUCK YEAH SEAKING IT'S PROCESSING
score
]
Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.
Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.
Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.
Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.
Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.
Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...
It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.
Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.
I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.
But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.
Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.
Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.
FUCK YEAH SEAKING IT'S PROCESSING
score
]
Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.
Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.
Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.
Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.
Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.
Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...
It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.
Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.
I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.
But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.
Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.
Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.
18 November, 2010
I hope someone remembers you
[sometimes I feel like it might seem like attention-seeking to post stuff like this. I do tend to write stuff whenever I'm upset and then finish it later, so just because I post songs like this doesn't mean that whatever it's about is going on now. It isn't in this case.]
If I could just kill half of you and leave the other half alive
so you could walk around and take phone calls but have nothing left to hide
because I'm too responsible to want to destroy your mind
but I'd do it, I'd do it every day if I could
My hands are shaking from nicotine and I like myself that way
so I can walk around and make phone calls and fall down at the end of the day
I can barely write out sentences and you can struggle to read what they say
because I mumble and you can't hear me most of the time
And I hope someone remembers you
I can get dressed and start a mess but there's nothing left to see
and when morning comes they'll find me trampling through the leaves
and maybe someone will call you up but they won't know how to explain
and they'll stutter, they'll stumble on their words from now on
If I was your Secret-Keeper I'd tell everyone where you are
You're smart enough that you'd figure it out and run away but you wouldn't get far
They'd come to your house, they'd take you apart and sell your insides for scrap metal
but you won't die, you don't die most of the time
And I hope someone remembers me most of the time
15 November, 2010
On Shambling
I had the creepiest dream about zombies, you guys. They were pretty out of it, but they could talk so even though you could tell by looking at them that they were dead a lot of people wouldn't read them as zombies. I got on one of those really big elevators with a guy my age and his little son, and then this older guy started to get on who I knew was a zombie. I told the guy my age not to let the guy on the elevator, and he ineffectively tried to stop him but he got on anyway. The whole time we were on this elevator, I was telling the zombie to stay on the other side of the elevator, and picking up this folding chair that was in the elevator and threatening to smash his head. By the time we got to my level (we were in a parking garage) the living guy in the elevator obviously thought there was something wrong with me because I was being so aggressive and rude to this other guy, who seemed really gentle. As I got off the elevator I grabbed the living guy and whispered in his ear, "He's a zombie. He will kill you."
When I got in the car two zombies I knew were just sitting in there like we were friends. Riding shotgun was this really nice female zombie (she reminded me a lot of a particular lady with a disability who I worked with this summer). In the back was the zombie from the elevator who was a little more calculating. I couldn't convince them to get out of the car, so I just started driving. The zombie from the elevator kept saying, "What did you whisper to him in the elevator? He was staying away from me. Why did you do that?"
Finally I was at the end of my rope. "Because if you bite people, they will die," I said. "When you bite people, they die, okay? I didn't want you to bite him."
"Oh, I see why you said that," said the female zombie.
I think this dream was interesting because it was the culmination of a lot of thoughts and feelings I've been having about zombies lately. I've been watching The Walking Dead a lot and obviously--and, yes, this does skeeve me out--pretty much every horror entity can be read as disabled in some way or another. Well, I don't read vampires that way, but lots of supernatural figures and ghosts tend to be creepy because they have nonstandard faces/bodies and/or they move differently. For example, in this completely terrifying short film Mama--which I've never been able to watch all the way through so don't be too hard on yourself. Another example is The Grudge where one of the ghosts often crawls around instead of walking. The Orphanage and Darkness Falls have ghosts that cover their faces because their faces are supposed to be so horrifying.
Recently I saw a YouTube video of people dressing up as and impersonating zombies. One commenter said that "they look like they have cerebral palsy," and was lambasted by other commenters for "making fun of people with special needs." I can't help seeing this as really disingenuous--not that the first commenter was awesome, but are you seriously going to pretend to be some kind of gooey champion of "special needs" when you're into zombies, which resemble disabled people more than any other monster? Like, look at this video of extras in The Walking Dead learning to "walk like zombies":
I mean, without the makeup there is kind of a sketchy feeling in watching this, at least for me. Some of the people still look supernatural, but a lot of them just look like they're doing an awkward impression of a disabled person. (By the way, I'm definitely including people with mind disabilities, including myself, in the "people who zombies movie like" category. For whatever reason, weird gaits tend to be a thing for a lot of people with ASD and ID.)
I think I ended up having a dream where I was kind of friendly with zombies because for the last month I've been developing a sense that I'm basically a zombie. Like, it seems like a pretty simple way to explain stuff. Look at this from the Walking Dead comics Wikipedia page:
Zombies may follow something that has caught their attention for hours, such as a gunshot, after which they may follow in the general direction for days, even if they have forgotten what they originally were pursuing.
From the page describing Romero zombies vs. other kinds of zombies:
The animated dead retain vague impulses derived from former living behavior. For instance, zombies often return to specific locations they frequented when alive...Lacking immediate victims to hunt, zombies will often fumble through crude motions reminiscent of life activities, often when prompted by a familiar artifact such as a telephone or car.
Yeah, pretty much.
I was thinking of writing a story about a person who is bitten by a zombie but thinks she can remain human through willpower. Then I found out from TV Tropes that this is already considered a trope, but I think there would still be mileage in it. Especially because I don't think a zombie apocalypse would happen (can you imagine a bunch of AWVs being powerful enough to destroy society?), I think that the infected person could still be trying to go to school or work or whatever, while losing the cognitive function that enables them to succeed in those environments. And they do a pretty good job, until one day they can't anymore.
(Note: if you found this post when you were googling The Walking Dead or something, please don't start making comments about how I'm too politically correct or whatever. I'm not trying to attack/call out anyone for being into zombies--I mean, I'm into zombies and I obviously am into/am affected by some of the other tropes I'm reading as disability tropes. It's probably kind of fucked up that that's the case, but I'm more interested in reclaiming this stuff and thinking about what it means instead of just saying it needs to go away.)
When I got in the car two zombies I knew were just sitting in there like we were friends. Riding shotgun was this really nice female zombie (she reminded me a lot of a particular lady with a disability who I worked with this summer). In the back was the zombie from the elevator who was a little more calculating. I couldn't convince them to get out of the car, so I just started driving. The zombie from the elevator kept saying, "What did you whisper to him in the elevator? He was staying away from me. Why did you do that?"
Finally I was at the end of my rope. "Because if you bite people, they will die," I said. "When you bite people, they die, okay? I didn't want you to bite him."
"Oh, I see why you said that," said the female zombie.
I think this dream was interesting because it was the culmination of a lot of thoughts and feelings I've been having about zombies lately. I've been watching The Walking Dead a lot and obviously--and, yes, this does skeeve me out--pretty much every horror entity can be read as disabled in some way or another. Well, I don't read vampires that way, but lots of supernatural figures and ghosts tend to be creepy because they have nonstandard faces/bodies and/or they move differently. For example, in this completely terrifying short film Mama--which I've never been able to watch all the way through so don't be too hard on yourself. Another example is The Grudge where one of the ghosts often crawls around instead of walking. The Orphanage and Darkness Falls have ghosts that cover their faces because their faces are supposed to be so horrifying.
Recently I saw a YouTube video of people dressing up as and impersonating zombies. One commenter said that "they look like they have cerebral palsy," and was lambasted by other commenters for "making fun of people with special needs." I can't help seeing this as really disingenuous--not that the first commenter was awesome, but are you seriously going to pretend to be some kind of gooey champion of "special needs" when you're into zombies, which resemble disabled people more than any other monster? Like, look at this video of extras in The Walking Dead learning to "walk like zombies":
I mean, without the makeup there is kind of a sketchy feeling in watching this, at least for me. Some of the people still look supernatural, but a lot of them just look like they're doing an awkward impression of a disabled person. (By the way, I'm definitely including people with mind disabilities, including myself, in the "people who zombies movie like" category. For whatever reason, weird gaits tend to be a thing for a lot of people with ASD and ID.)
I think I ended up having a dream where I was kind of friendly with zombies because for the last month I've been developing a sense that I'm basically a zombie. Like, it seems like a pretty simple way to explain stuff. Look at this from the Walking Dead comics Wikipedia page:
Zombies may follow something that has caught their attention for hours, such as a gunshot, after which they may follow in the general direction for days, even if they have forgotten what they originally were pursuing.
From the page describing Romero zombies vs. other kinds of zombies:
The animated dead retain vague impulses derived from former living behavior. For instance, zombies often return to specific locations they frequented when alive...Lacking immediate victims to hunt, zombies will often fumble through crude motions reminiscent of life activities, often when prompted by a familiar artifact such as a telephone or car.
Yeah, pretty much.
I was thinking of writing a story about a person who is bitten by a zombie but thinks she can remain human through willpower. Then I found out from TV Tropes that this is already considered a trope, but I think there would still be mileage in it. Especially because I don't think a zombie apocalypse would happen (can you imagine a bunch of AWVs being powerful enough to destroy society?), I think that the infected person could still be trying to go to school or work or whatever, while losing the cognitive function that enables them to succeed in those environments. And they do a pretty good job, until one day they can't anymore.
(Note: if you found this post when you were googling The Walking Dead or something, please don't start making comments about how I'm too politically correct or whatever. I'm not trying to attack/call out anyone for being into zombies--I mean, I'm into zombies and I obviously am into/am affected by some of the other tropes I'm reading as disability tropes. It's probably kind of fucked up that that's the case, but I'm more interested in reclaiming this stuff and thinking about what it means instead of just saying it needs to go away.)
13 November, 2010
olympics
I remember feeling annoyed by some of the comments on Ari's Wired interview in the ontd_political community on LiveJournal. Basically the interviewer wrote something like, "Imagine a world where most of the public discussion of homosexuality was about curing it." And everybody flipped out and was like, "but that IS what it's like!! Oppression Olympics!"
First of all, the interviewer is gay, which I think matters. His experience as a gay person obviously hasn't led him to feel that most of the public discussion of homosexuality is about curing it, or he wouldn't have made that analogy. I understand commenters may not have known he was gay, but they assumed he wasn't. And I think the fact that a gay person made that analogy indicates that "public discussion of homosexuality is mostly about curing it" is a disingenuous statement in the US. I wouldn't make that analogy just because I don't think it's particularly helpful (plus I'd expect all the Oppression Olympics accusations), but as a gay person I don't think the basis of the analogy is untrue. Of course SSA people are oppressed but I think we moved out of the medical model a long time ago, which is a triumph.
I was also really pissed because at one point one of these people said, "Hey, people get KILLED for being gay, that's not a fair comparison." Getting pissed at someone else for doing Oppression Olympics on what you claim is not a true assumption, and then starting your own Oppression Olympics round based on an assumption that is incredibly untrue, and obviously so to anyone who's engaged with disability issues...is way way worse than what Steve Silberman did.
Oppression Olympics--let's call it "comparing oppressions" to be a little more measured--is a tricky issue. A few months ago I posted about this person who was saying, "Pop culture is so into portraying autism but eating disorders and depression should be portrayed too." That person's post really frustrated me because they obviously didn't have a good grasp on how autism is being portrayed or how people with autism feels about those portrayals. They didn't have the compassion, or didn't do enough research, and ended up complaining about how good people with autism have it in pop culture compared to them and their friends with psychiatric disabilities.
However, I do think that comparing oppression can sometimes be a good thing. Because I'm queer and disabled I'm obviously aware of things straight and non-disabled people do like "trying to explain alternate points of view and get you to think more objectively." (I'm not going into detail on this, but do you know what I'm talking about?) So I think this means that while I definitely don't "get" what it's like to be a person of color, etc., I'm at least a little more aware of my privilege and try not to go all, "But you're being mean! Think about white people!" This term I have also felt sort of weird in my fiction class because I've felt kind of synced-in to classmates of color's stories which address identity and experiences of oppression, but when my instinct is to respond to those stories as a minority, I worry that it will be rude because they may not read me as a minority or as the same kind of minority as them.
I recently had the interesting experience of saying to someone, "I mean I know comparing oppressions is wrong, but--" and having the other person cut me off: "I don't think it's wrong. I think the only way anyone ever learns anything about someone else's oppression is by having it related to a type of oppression they're familiar with."
Which...damn, I'm sorry, but that is how it's worked for me.
I feel like one way of looking at this is that there are just two different kinds of comparing oppressions and one is trying to prove that someone has it worse than someone else (which I guess you should say is about dividing people), and one is trying to help people understand other people's experiences (which is about allyship and connection), but I think this is really an oversimplified way of putting it, because a lot of the time someone will think they're doing the latter, but other people will feel that they're doing the former. For example, when the Special Olympics did ads where they used racial slurs to try to make people more aware of ableist slurs. That was really fucked up. At the same time I feel like trying to relate ableism to other forms of discrimination can be useful sometimes.
First of all, the interviewer is gay, which I think matters. His experience as a gay person obviously hasn't led him to feel that most of the public discussion of homosexuality is about curing it, or he wouldn't have made that analogy. I understand commenters may not have known he was gay, but they assumed he wasn't. And I think the fact that a gay person made that analogy indicates that "public discussion of homosexuality is mostly about curing it" is a disingenuous statement in the US. I wouldn't make that analogy just because I don't think it's particularly helpful (plus I'd expect all the Oppression Olympics accusations), but as a gay person I don't think the basis of the analogy is untrue. Of course SSA people are oppressed but I think we moved out of the medical model a long time ago, which is a triumph.
I was also really pissed because at one point one of these people said, "Hey, people get KILLED for being gay, that's not a fair comparison." Getting pissed at someone else for doing Oppression Olympics on what you claim is not a true assumption, and then starting your own Oppression Olympics round based on an assumption that is incredibly untrue, and obviously so to anyone who's engaged with disability issues...is way way worse than what Steve Silberman did.
Oppression Olympics--let's call it "comparing oppressions" to be a little more measured--is a tricky issue. A few months ago I posted about this person who was saying, "Pop culture is so into portraying autism but eating disorders and depression should be portrayed too." That person's post really frustrated me because they obviously didn't have a good grasp on how autism is being portrayed or how people with autism feels about those portrayals. They didn't have the compassion, or didn't do enough research, and ended up complaining about how good people with autism have it in pop culture compared to them and their friends with psychiatric disabilities.
However, I do think that comparing oppression can sometimes be a good thing. Because I'm queer and disabled I'm obviously aware of things straight and non-disabled people do like "trying to explain alternate points of view and get you to think more objectively." (I'm not going into detail on this, but do you know what I'm talking about?) So I think this means that while I definitely don't "get" what it's like to be a person of color, etc., I'm at least a little more aware of my privilege and try not to go all, "But you're being mean! Think about white people!" This term I have also felt sort of weird in my fiction class because I've felt kind of synced-in to classmates of color's stories which address identity and experiences of oppression, but when my instinct is to respond to those stories as a minority, I worry that it will be rude because they may not read me as a minority or as the same kind of minority as them.
I recently had the interesting experience of saying to someone, "I mean I know comparing oppressions is wrong, but--" and having the other person cut me off: "I don't think it's wrong. I think the only way anyone ever learns anything about someone else's oppression is by having it related to a type of oppression they're familiar with."
Which...damn, I'm sorry, but that is how it's worked for me.
I feel like one way of looking at this is that there are just two different kinds of comparing oppressions and one is trying to prove that someone has it worse than someone else (which I guess you should say is about dividing people), and one is trying to help people understand other people's experiences (which is about allyship and connection), but I think this is really an oversimplified way of putting it, because a lot of the time someone will think they're doing the latter, but other people will feel that they're doing the former. For example, when the Special Olympics did ads where they used racial slurs to try to make people more aware of ableist slurs. That was really fucked up. At the same time I feel like trying to relate ableism to other forms of discrimination can be useful sometimes.
12 November, 2010
Social Skills Don't Exist
An exploration of the concept of social skills, particularly (but not exclusively) as it relates to people with autism, victim-blaming, and the Power of Love:
1. What are social skills?
2. What this is not
Showing likability and connection, and skill and work, that is unrelated to being normal:
3. About Stephen
4. Social skills and intent
5. Is going to a hospital normal?
6. Mindfulness and modulation (a general look)
7. Break for love
Some more on skill/work/compassion:
8. Mindfulness and modulation (cashiering)
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)
Other things on various subjects:
10. a note on a
10a. input vs. output
11. My year of flops
12. Bird brains
13. Social model of social failure
1. What are social skills?
2. What this is not
Showing likability and connection, and skill and work, that is unrelated to being normal:
3. About Stephen
4. Social skills and intent
5. Is going to a hospital normal?
6. Mindfulness and modulation (a general look)
7. Break for love
Some more on skill/work/compassion:
8. Mindfulness and modulation (cashiering)
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)
Other things on various subjects:
10. a note on a
10a. input vs. output
11. My year of flops
12. Bird brains
13. Social model of social failure
13. Social model of social failure
I guess this as close as I will get to an ending. I've typed up everything I can find in my notebook related to this, and written the things I had floating around.
Basically I think it's definitely true that a lot of normal people sync up with each other and come off in certain ways to each other, and then when a lot of people with autism don't sync up with normal people, or don't come off properly, the results can be very bad for the person with autism.
I don't think this relates to people with autism not having "social skills."
I don't think social skills exist. Or, if I do, I think they exist like God exists--in everyone. They just may not always be apparent. For example, I may have very good social skills when relating to other people who have disabilities, or people who are interested in the same things I'm interested in. I have much better social skills with men than I do with women. Social skills are not contained in a person--they require the right other person.
With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people--or, so that more people can have good social skills with them. It's the same thing.
Some people--disabled or not--may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.
Other people will just not let other people in. Sometimes it will be because the other person is obviously different. Such people may have good social skills when interacting with people who aren't different. But with people who are different, they will always have no social skills; and when a person who's different is with someone like that, they will "lack social skills" too. (But if they were told by a professional that they lack social skills, they won't understand the two-way nature of the failed connection.)
A person could be going through life, who can't talk, doesn't like to look at people, and is in a lot of emotional pain which they express with "challenging behaviors." This person may live in an institution where no one engages with them because the person is not judged to be interesting, or interested, or capable. One day a new person comes to the institution who is interested in the first person. They start to walk around together and sit together, even though they don't look at each other. Maybe they play games like the two kids I knew who liked to move each other's arms without looking at each other. Maybe they make noises at each other. Maybe they just physically stay near each other as much as possible. This is what life is about, and for some people, it never happens.
But it just takes people who fit each other, or learn to fit each other.
When someone is isolated or bullied, that is not all about them. Other people are bullying them and deciding not to engage them. Still other people, from a distance, in abstract, are framing the person as Someone Without Social Skills, while leaving the other people involved unmarked.
But everyone involved must have bad social skills, because they are all contributing to what is going on. Maybe we can't in the short term stop people from bullying and isolating other people, but we can in the abstract apply the social model of social failure, and stop saying that social failures deserve to be alone.
Basically I think it's definitely true that a lot of normal people sync up with each other and come off in certain ways to each other, and then when a lot of people with autism don't sync up with normal people, or don't come off properly, the results can be very bad for the person with autism.
I don't think this relates to people with autism not having "social skills."
I don't think social skills exist. Or, if I do, I think they exist like God exists--in everyone. They just may not always be apparent. For example, I may have very good social skills when relating to other people who have disabilities, or people who are interested in the same things I'm interested in. I have much better social skills with men than I do with women. Social skills are not contained in a person--they require the right other person.
With work, I think a lot of people can learn to develop their mindfulness and modulation skills so that they can have good social skills (i.e., capacity to connect) with more people--or, so that more people can have good social skills with them. It's the same thing.
Some people--disabled or not--may not be able to learn how to do that, but they will still sometimes meet a person who is exactly like them, or who is very good at mindfulness and modulation, and they will have good social skills when they are with that person.
Other people will just not let other people in. Sometimes it will be because the other person is obviously different. Such people may have good social skills when interacting with people who aren't different. But with people who are different, they will always have no social skills; and when a person who's different is with someone like that, they will "lack social skills" too. (But if they were told by a professional that they lack social skills, they won't understand the two-way nature of the failed connection.)
A person could be going through life, who can't talk, doesn't like to look at people, and is in a lot of emotional pain which they express with "challenging behaviors." This person may live in an institution where no one engages with them because the person is not judged to be interesting, or interested, or capable. One day a new person comes to the institution who is interested in the first person. They start to walk around together and sit together, even though they don't look at each other. Maybe they play games like the two kids I knew who liked to move each other's arms without looking at each other. Maybe they make noises at each other. Maybe they just physically stay near each other as much as possible. This is what life is about, and for some people, it never happens.
But it just takes people who fit each other, or learn to fit each other.
When someone is isolated or bullied, that is not all about them. Other people are bullying them and deciding not to engage them. Still other people, from a distance, in abstract, are framing the person as Someone Without Social Skills, while leaving the other people involved unmarked.
But everyone involved must have bad social skills, because they are all contributing to what is going on. Maybe we can't in the short term stop people from bullying and isolating other people, but we can in the abstract apply the social model of social failure, and stop saying that social failures deserve to be alone.
Subscribe to:
Posts (Atom)
