I wrote this paper for an exco I took last term and I just found it when Mtthw inexplicably asked for me to repost the notes I took for the class. It is too long for tumblr, so have fun.
DISABILITY AND NORMALCY IN SLEEPING BEAUTY AND THE LITTLE MERMAID
There is often conflict between the disabled community and mainstream society about what is best for disabled people. Often, disabled people think that success involves putting someone in a situation where they can be as happy and functional as possible; while mainstream society thinks that success means altering someone until they appear “normal.” While actual disabled characters don’t usually appear in Disney movies (except for villains like Captain Hook), these kind of values can be read in the treatment of non-human characters who are different from humans or lack abilities that humans have.
An example of a non-human character who sends a positive message about disability is Tinkerbell in Peter Pan. She can’t talk, but this is never a problem, because everyone in Tinkerbell’s life has learned to understand the way she communicates. Even though she wasn’t created to make this point, Tinkerbell can nonetheless make the point to viewers that she doesn’t need to be altered to fit in with the other characters.
Some non-human characters who do alter themselves and attempt to be human are the three good fairies in Sleeping Beauty and Ariel in The Little Mermaid; and each character shows the problems inherent in attempting to be “normal” rather than aiming to be successful as yourself. Each of these characters is competent when she’s in her natural form and environment, but when expected to perform as humans, they are all lacking.
In their non-human form, the fairies are not as powerful as Maleficent, but they are the most powerful characters in the movie aside from her and it is almost solely through their actions that Aurora is saved from the curse. When they are human, they make one of the big mistakes of the narrative that allows Maleficent to find out where Aurora is. The mistake they make is not just because they are human, but precisely because they are fairies trying to be human who have realized they can’t pretend to be human any longer.
As humans, the fairies are portrayed as lacking either the cognitive abilities or the experience (if not both) to perform tasks like cooking, cleaning, and making clothes. In real life, a person who couldn’t cook or clean for herself wouldn’t be able to live without help, and adults who can’t live without help are often treated rather harshly; but in the case of the fairies, their inability to do these things doesn’t mean they’re seen as defective, but simply that they’re trying to be something they aren’t. Their lapse into using magic again, while it happens at an inconvenient time, is the natural result of putting themselves in an unnatural situation.
Therefore, Sleeping Beauty has a positive portrayal of its “disabled” characters. Their inability to perform normal tasks is humorous, and ultimately not a problem for them, because it is acceptable for them to live differently and rely on other skills to take care of themselves. Humanity is not a goal, but simply something they tried and failed, and then abandoned without seeing their failure as reflecting badly on them.
In The Little Mermaid, however, Ariel’s desire to be a human is a goal that, from the perspective of the movie, she has to achieve at all costs. It wouldn’t really be accurate to say that she desires Eric above all, because she is interested in humans from the beginning and seems to fall in love with him because he’s the first human she sees. While the fairies’ disguise as peasants doesn’t seem like something most viewers could relate to, Ariel’s longing for humanity is more comparable to the way real disabled people are expected to long for normalcy; it’s not just another way of being, it’s an inherently better life.
Objectively, Ariel’s life isn’t bad, but she sees it as inferior: “Flipping your fins you don’t get too far/Legs are required for jumping, dancing,” she sings, ignoring the speed and grace of her own movement. There’s nothing strange about a sheltered teenager being interested in people from another place, but it does become disturbing how Ariel dismisses her own body as nothing but an obstacle to human life, and that this is portrayed as not mere teenage restlessness, but a sensible outlook.
Ariel’s initial life as a human is also comparable to the life of a disabled person trying to be as normal as possible. In real life, a disabled person trying to function as a non-disabled person has to make sacrifices non-disabled people don’t have to make. As a human Ariel can no longer do what she did best as a mermaid (singing), and, most importantly, cannot communicate. (It’s interesting that her inability to communicate keeps Ariel from even being able to tell people that she used to be a mermaid. As is often expected to happen when disabled people are “cured,” she completely drops the identity she had before.)
The Little Mermaid had the potential to be a more unique story about a nonstandard character trying to be normal. In addition to losing her voice, the mermaid in the original story finds it incredibly painful to walk and dance, but does so anyway in order to be attractive to the prince; and she ultimately isn’t able to land the prince, partly because she has given up her ability to communicate so he doesn’t know that she’s the person who saved him. In the fairy tale, the mermaid’s attempt to be human is tragic.
Obviously, the Disney version of the story could not be tragic because that’s not how Disney movies are. But the story could have been given a happy ending in which Ariel went back to being a mermaid without losing her relationship or her zest for life. Instead, the Disney movie glosses over Ariel’s sacrifice, by making her only lose her voice instead of also being in pain; and in the end, she is magically cured of both her lack of humanity and the difficulties that a magical creature trying to be human would have (her voicelessness).
The Little Mermaid has often been identified as a problematic movie in terms of gender, because Ariel changes her body for a man. But it’s also problematic in terms of disability, because Ariel must change herself to a more normal form to realize her dreams. While in Sleeping Beauty, the fairies’ attempt to be human is an impetuous bad idea, it’s presented as the only way Ariel can be happy. Viewers are told not only a)having a normal body is worth the sacrifices, but b)don’t worry about that, because actually, switching from abnormal to normal will become easy and eventually have no drawbacks attached at all.
Showing posts with label cure. Show all posts
Showing posts with label cure. Show all posts
03 December, 2011
12 October, 2010
"it's social model vs. medical model NOT mild vs. severe disability" transcript
Hey, okay, so I just wanted to say something because I keep reading a lot of flamewars, which is probably a stupid thing for me to do 'cause it just makes me annoyed, but I just ended up feeling like if someone just came out and said this then people wouldn't be so annoying to each other on the Internet.
So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.
Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."
And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.
Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.
And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.
And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"
Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."
Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."
So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.
So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.
And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.
So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.
Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."
And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.
Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.
And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.
And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"
Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."
Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."
So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.
So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.
And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.
02 October, 2010
Why God won't heal amputees
(I already posted this on my tumblr, so I apologize for anyone reading it twice. I just figured since I wrote two tumblr posts on it I could combine them into one regular-length post.)
It’s funny because I think why won’t God heal amputees? is a really important question but not for the same reason the people at the website think it is.
(First of all you’re assuming that the only possible God is a God who answers prayer at least some of the time. This is obviously not true--and in fact I don’t believe in “the power of prayer” in the mainstream Christian sense, so I am not arguing completely from my own point of view--but I’ll let it go for now.)
1. Presumably you don’t think that if someone prays for something that’s obviously really bad, the fact that it doesn’t come true proves the nonexistence of God. I think most people who believe in the power of prayer wouldn’t be swayed by someone saying, “I prayed to God for my ex-boyfriend to be in a car accident and die, but it didn’t happen!”
2. Disability is part of Creation. God won’t heal amputees, and won’t heal many other PWDs, because without disability life would be really stupid and boring. Just because someone thinks they should be non-disabled doesn’t mean they should be, anymore than someone who thinks their ex-boyfriend should die in a car accident is actually right.
The End.
some other responses: The Thinker
Wheelie Catholic (who also points out how offensive the whole website is to PWDs)
And, also:
when I was a kid, I used to have this book Always Wear Clean Underwear, which I think my parents got me because they were atheists but I was really interested in religion which they weren’t super happy about, but I think they got accustomed to it and realized they should try to make me be the kind of religious person that atheists can still get along with. So they gave me this book which was written by a rabbi and mentioned God and praying a little bit, but was mostly just a funny book about how to be a good person.
There was one part in the book where he described hell as being a place where a bunch of hungry people are sitting around a table piled high with delicious food, but when they reach out and pick up the food, their arms won’t bring it back to their mouths. Then he described heaven the same way. Since you are not eleven years old, I bet you can figure out the surprise ending: in heaven, everyone feeds each other. I know this is cheesy but I like it.
I think this also applies to our regular, pre-afterlife life, and can pretty easily be related to the question that atheists think is going to really stump religious people: “But are you saying that GOD CREATED DISABLED PEOPLE?? HOW COULD THAT POSSIBLY BE TRUE??”
Okay guys, let’s think about this. Disability is socially constructed. “Socially constructed” doesn’t mean that disability isn’t real. It’s super real. But it’s real because people who look and act different are discriminated against, and people who have different needs don’t have those needs met.
You, yourself, going around saying, “but look, if God really is so great, why did He create people who can’t do all the stuff that I think people should be able to do? Why doesn’t He cure them?”—you yourself have the power to cure all the disabilities in the world, by treating disabled people as equals and trying to help everyone get what they need, and encouraging everyone you know to do the same. You could actually be curing disabled people right now, but instead you’re making a dumb website where you try to use a cliched idea of disabled people to prove a point.
It’s funny because I think why won’t God heal amputees? is a really important question but not for the same reason the people at the website think it is.
(First of all you’re assuming that the only possible God is a God who answers prayer at least some of the time. This is obviously not true--and in fact I don’t believe in “the power of prayer” in the mainstream Christian sense, so I am not arguing completely from my own point of view--but I’ll let it go for now.)
1. Presumably you don’t think that if someone prays for something that’s obviously really bad, the fact that it doesn’t come true proves the nonexistence of God. I think most people who believe in the power of prayer wouldn’t be swayed by someone saying, “I prayed to God for my ex-boyfriend to be in a car accident and die, but it didn’t happen!”
2. Disability is part of Creation. God won’t heal amputees, and won’t heal many other PWDs, because without disability life would be really stupid and boring. Just because someone thinks they should be non-disabled doesn’t mean they should be, anymore than someone who thinks their ex-boyfriend should die in a car accident is actually right.
The End.
some other responses: The Thinker
Wheelie Catholic (who also points out how offensive the whole website is to PWDs)
And, also:
when I was a kid, I used to have this book Always Wear Clean Underwear, which I think my parents got me because they were atheists but I was really interested in religion which they weren’t super happy about, but I think they got accustomed to it and realized they should try to make me be the kind of religious person that atheists can still get along with. So they gave me this book which was written by a rabbi and mentioned God and praying a little bit, but was mostly just a funny book about how to be a good person.
There was one part in the book where he described hell as being a place where a bunch of hungry people are sitting around a table piled high with delicious food, but when they reach out and pick up the food, their arms won’t bring it back to their mouths. Then he described heaven the same way. Since you are not eleven years old, I bet you can figure out the surprise ending: in heaven, everyone feeds each other. I know this is cheesy but I like it.
I think this also applies to our regular, pre-afterlife life, and can pretty easily be related to the question that atheists think is going to really stump religious people: “But are you saying that GOD CREATED DISABLED PEOPLE?? HOW COULD THAT POSSIBLY BE TRUE??”
Okay guys, let’s think about this. Disability is socially constructed. “Socially constructed” doesn’t mean that disability isn’t real. It’s super real. But it’s real because people who look and act different are discriminated against, and people who have different needs don’t have those needs met.
You, yourself, going around saying, “but look, if God really is so great, why did He create people who can’t do all the stuff that I think people should be able to do? Why doesn’t He cure them?”—you yourself have the power to cure all the disabilities in the world, by treating disabled people as equals and trying to help everyone get what they need, and encouraging everyone you know to do the same. You could actually be curing disabled people right now, but instead you’re making a dumb website where you try to use a cliched idea of disabled people to prove a point.
18 May, 2010
Our shrinking island
I
Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.
Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?
I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.
I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.
II
Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.
I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."
Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.
(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)
III
I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.
I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.
This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.
I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.
Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.
Recently I saw a person on the Internet defending neurodiversity by saying that intellectual disability and brain injuries aren't part of neurodiversity. (This was in response to a person who was arguing against neurodiversity by talking about how bad their kid with a brain injury has it.) Later, the person said that they weren't sure about what they said and maybe they do consider ID to be part of neurodiversity. The thing is, though, that while that had especially bothered me since I feel especially invested in ID issues, the idea of saying which disabilities are and are not covered by neurodiversity is inherently not okay with me. Letting ID, or any other disability, under the neurodiversity umbrella doesn't change the fact that according to this person only particular disabilities are allowed.
Although I don't mean to imply that all or most people who identify as supporting neurodiversity think about it as not being for everyone, the comment I saw just seems like a really extreme embodiment of what it means to use the term neurodiversity at all. I get very hung up on terms and neurodiversity is a term that has for a long time hung me up. Why not just say "disability rights," or if you are being specific, "autism rights," "developmental disability rights," "learning disability rights," and so on?
I do have trouble with this myself because "rights" implies that I am talking about concrete changes and I'm frequently not, and neither, frequently, are other people. I believe the personal is political and I generally write about personal things from a frame of deconstructing ableism. So maybe "disability rights" isn't the best thing to say. But at least it has the word disability in it.
I'm starting to think that every tenth or fifteenth post on this blog is exactly the same post. But bear with me.
II
Defending your disability (or, sorry, "way of being") by saying that it isn't so bad or you are really good at other things that make up for the things you are bad at is a tack doomed to failure. Especially if you have ASD, is what I was going to say, because a lot of people with ASD "have no skills" as Alison Singer once charmingly said about her daughter--this isn't how I think about people, but I'm just saying it's definitely possible for people who do think that way to pull out lots of ASD people to use as examples of how someone with ASD can't necessarily be mathematically calculated to be equal to a normal person.
I was going to say that. That, like, maybe it makes a little more sense with something like ADHD that doesn't ever result in people not being able to talk and usually doesn't result in people not being able to live independently. Because with ASD it's very easy for someone to be like "oh look at this person who can't live independently, their life is bad."
Unfortunately, I realize that's not even an argument that the people I'd be addressing are unaware of. They know, and their tactic is retreat. They defend neurodiversity by saying they are only counting some people with ASD. They are only counting the people who are equal to non-disabled people, good at memorizing pi or killing cows creatively--and again, no, that is not what I think the world equal means. But if you accept the idea that the word equal means that, or that a good life is a life where a person reaches certain "milestones," then you will always be in retreat.
(I also think that, while a person like me will be safe for a long time, they're capable of moving the milestones.)
III
I recently met the most severely disabled person I've ever met, a girl in Joe's class who can't walk, can't talk, can't eat, and doesn't lift her hands from the desk of her wheelchair. H. is fourteen, and she can and does look at things and have emotional reactions to them. I haven't known her long and I would not claim to know her well, but anyone can see her smile when she sees a new person or object, or laugh when the kids in her class are screwing around.
I think this is really important and is maybe the core or the base of what I believe in. I have no idea how H. feels about her life, and wouldn't try to extrapolate from the fact that she frequently laughs. At the same time, she does laugh. I'm dissatisfied with this world's conception of disability because I think it tries to erase the individuality of PWDs. Or to say that individuality (including joy) is incompatible with disability that is severe past a certain point--that a life that is something more complex than endlessly grim is not possible for you, or if it is, you're different from other disabled people who really are tragic.
This is a hard thing to put into words because I often feel that some people who use the wrong words are nonetheless expressing things in tune with my values. It is almost impossible to say that my beliefs are about a principle because they're highly specific. They are about a way of looking at and thinking about people, and not writing people off because of a list you can make in your head about what such a person can't do or can't experience.
I feel that I have to express my values using a term that includes the word disability, because I don't want to use any term that could be used to say, "my disability isn't that bad or it isn't really a disability because I'm good at math." I do not think that having a disability that is "that bad" disqualifies anyone from being looked at honestly and valued as an individual. I'm not prepared to say I'm "anti-cure" in some concrete way, but I tend to feel thankful that God allowed disability into the universe. I'm not good at overarching principles and ideas, but I do experience some kind of spirituality and joy, and that joy often comes from realizing that someone is much more complex than I thought. So that's what I believe in.
Every single person who has ever lived deserves to be talked about and portrayed not as someone who Will Never or Can't Even, but as someone who Is. There is no point at which someone stops deserving to be an Is.
30 March, 2010
someone is right on the Internet
"When I tip over a carton of milk, I don't rush around demanding a cure for gravity...I first deal with the immediate problem by righting the carton and wiping up the spill."--Don Sakers in the AS livejournal community
28 March, 2010
this is a transcript, obviously
Hey, so I can't remember if this wasn't recent or if it was a while ago, but my friend Todd was like, "How come you don't make any YouTube videos anymore?" and I was like, "Todd, um, I can't talk, that's why I don't make videos."
Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.
So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.
Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]
...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...
I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.
I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.
I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."
I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.
But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.
Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?
But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?
I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.
Like I feel like the reason I was making them in the first place was just as an experiment in talking, because I usually don't talk because I don't talk very well, so I realized it was kind of cool to make YouTube videos because I could practice saying things as many times as I wanted, or I could just say things and never post them but just listen to them and listen to how I talk. It's just really exciting to have the freedom to talk when you usually don't talk because you're a shitty speaker.
So that's my thing, and I don't know why Todd can't just read my blog, or he could call me on the phone and then he could listen to how horribly I talk--but then I guess he couldn't see me fidgeting around, which is maybe the best part.
Well, something happened, current events. It involves a person that I know but I really don't like to say his name because it has too many vowels in it--see, this is why I can't make videos, this kind of shit is actually sincerely upsetting to me because it's hard for me to say words that have too many vowels in them. That's why I don't talk. Well. This is his name. [holds up hand that says "Ari Ne'eman" on it, and carries on about that situation for a while, but I'm not transcribing most of that because I already posted about it twice]
...Do we need autistic mice? They would be cute, but what's even cuter, I think, is kids with severe autism getting an education so that they can communicate. I think that would be even more adorable than autistic mice...
I think I was going to talk about the idea of cure but the problem is that it's so nebulous to me and it feels so personal that it's hard for me to really say that I'm anti-cure--or what I like to say, rhetorically, is that I'm pro-cure and that I would take a cure pill, but just that I don't think, um, that I don't think it's particularly likely or easy, so.
I guess, okay. I would take a cure pill now, I think. Yeah, I can say that for sure. You know, it just makes stuff harder. But because stuff has been harder, I've realized, you know--I haven't had all the options that other people have had, I guess, I haven't been able to say, "I'm going to do this when I grow up," because I know that there are a lot of things, because I can't talk very well, and certain other things that are not going to be really possible--so I think, because of that I became interested in working with people with disabilities which really has been hugely meaningful to me, and if that hadn't happened, if I'd had all these options I'm afraid that that wouldn't have been the case. I also--I feel that my love for people is different and almost more tender because it's been so hard for me to be close to people and understand them that when it happens it's almost such a shock that it's sort of miraculous.
I guess my problem is I just don't necessarily have a very standard way of looking at things and whether things are good or bad, and I know, objectively, that having a disability, I think makes your life worse, but I mean, I mean, I mean, I can see how that's true if you write it all down, like, mathematically, I guess it's all worse, but it's just like, I feel that my life has been so meaningful to me through my disability and through other people's disabilities that it's really difficult for me to say "I don't want disabilities to exist."
I mean, if you don't want pain and disability to exist, like, instead of trying to figure out the gene for autism or continuing to abort fetuses with the gene for Down Syndrome--I mean, I think that the condition of pain and difficulty is called, um, "life," and I think every fetus has the gene for life, so I think it might be better if people just stopped living or having babies, if you really want life to not have difficulty in it.
But, I mean, okay, I feel concerned saying this because I know that this is, like, a political issue, but for me, I guess it's really hard for me to think about it because it feels philosophical and religious to me, and, I don't know. I haven't read this so I probably shouldn't talk about it, but I read about a woman who was a disabled Christian theologian, and she wrote books talking about Christ as a disabled person, since He was a person who was injured and in pain, and I feel, I don't know, I guess it's hard for me to, as a Christian person, to see the condition of injury and incompleteness, to see those things as something that I have and other people don't. I feel like it's clearer for me, sometimes I almost feel luckier because I feel like it's pretty easy for me to understand that I have a bunch of original sin going on because I'm not very good at hiding anything that I'm thinking or feeling, so I just know about it.
Yeah, I'm sorry to say this. I guess this isn't political, except the beginning, you should support Ari, but um, it's just difficult for me to think about disability the way that you're supposed to think about it. It's kind of like, um, what's the line, it's from Serenity, you know when the Operative is talking about the better world or whatever and he says, "Oh, I'm not going to live in the better world." Like, hypothetically, I understand that a world without disability is in some form a better world, right?
But I mean, I just don't want it, you know, I feel like if we get a world without disabilities I feel like I'm just gonna hop into a time machine and go back somewhere where we have them again, because I just don't understand the point of life without disabilities. Um, yeah, I don't know--is this a weird thing to think?
I mean, I know people with severe disabilities and I feel for them a lot when they're in pain so I don't think it's that I don't understand what disability is, that I think it's just a little thing, but it's just, it's hard for me to think that we should just get rid of it I guess--yeah, that's all.
I support Ari Ne'eman, part two
Hi.
I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.
I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.
I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.
In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.
The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.
The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.
But I do think ASD mice would be really cute.
I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.
I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.
I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.
In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.
The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.
The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.
But I do think ASD mice would be really cute.
13 February, 2010
If I am ever famous my answer to the big question
That's a hard question for me to answer because I'm a religious person and I feel like I don't know why God does things and just because something upsets me doesn't mean that it isn't part of some greater mosaic I don't understand. I mean, maybe God wanted me to have to learn about people in a systematic way because it means my love is more mathematical and apparent. Maybe people are always sort of foreign to me so they seem the way animals and trees seem to regular people.
I'll just come right out and say I'd rather have my homosexuality cured than my ASD. Being gay is more of a problem for me. For one thing, a developmental delay is just a delay and you can catch up. Obviously my whole ASD can't be summed up as a developmental delay. But some of it can, and the parts that remain are (in large part) things that I want that are weird things to want. But I've figured out how to get some of those things. And I expect to improve in both domains--catching up and figuring out how to get weird things. So it's complicated and everything, but it's not a block, it's something to think about and work around.
Being gay also comes in two parts. First it shuts you off from people so you have to learn how to lie or how to manage your lying. In the same area, the people you have a crush on don't have a crush back, so you have to work around it and have very intense friendships and stuff, and basically learn that there isn't only one kind of love, that you don't have to be a robot just because this one thing isn't feasible. The first domain is one I can work with, just like ASD. The second domain is the domain where you still sort of want the kind of love that you can't have. Unlike with ASD, I haven't figured out how to get this, and statistically I know it might not happen. This isn't ruining my life, but it is a block. I would say it's like missing an arm, but I don't know if people who are missing an arm actually feel that way. Maybe it's more like having a phantom limb or Body Integrity Identity Disorder.
So, I'd rather be straight. But that's not the answer you were looking for, is it? I'm supposed to be a less complicated person where ASD is my only problem. So, let's assume they found a cure for ASD but not homosexuality. Well, obviously I want it. And the idea that I'd be losing something (besides whatever side effects come from systematic love, etc.) is kind of like when queer-identified people try to pretend that all straight people are incredibly two-dimensional and gender-normative. It's possible to be a normal person who is intense about things and doesn't like parties that much and has serious experiences with color. That's the kind of normal person I'd want to be. So I could still do the same things. Also if I want I could be a social worker, a pastor, or a Latin teacher, or go and live in a foreign country without dropping out behind my eyes. Also I'd be a better faker so I'd probably be better at being gay. Who knows if I'd be gay if I wasn't ASD--so maybe you could kill two birds with one stone.
The problem is, though, that this is just an exercise, and curing ASD isn't very likely. What they are working on is just having people not be born. If that's your question, I would rather have been born, but thanks. Also, this isn't a question I think about very much because I have other stuff to do. And it makes me feel uncomfortable that you would ask me something like this. Can I ask you something overly personal and completely irrelevant about yourself?
I'll just come right out and say I'd rather have my homosexuality cured than my ASD. Being gay is more of a problem for me. For one thing, a developmental delay is just a delay and you can catch up. Obviously my whole ASD can't be summed up as a developmental delay. But some of it can, and the parts that remain are (in large part) things that I want that are weird things to want. But I've figured out how to get some of those things. And I expect to improve in both domains--catching up and figuring out how to get weird things. So it's complicated and everything, but it's not a block, it's something to think about and work around.
Being gay also comes in two parts. First it shuts you off from people so you have to learn how to lie or how to manage your lying. In the same area, the people you have a crush on don't have a crush back, so you have to work around it and have very intense friendships and stuff, and basically learn that there isn't only one kind of love, that you don't have to be a robot just because this one thing isn't feasible. The first domain is one I can work with, just like ASD. The second domain is the domain where you still sort of want the kind of love that you can't have. Unlike with ASD, I haven't figured out how to get this, and statistically I know it might not happen. This isn't ruining my life, but it is a block. I would say it's like missing an arm, but I don't know if people who are missing an arm actually feel that way. Maybe it's more like having a phantom limb or Body Integrity Identity Disorder.
So, I'd rather be straight. But that's not the answer you were looking for, is it? I'm supposed to be a less complicated person where ASD is my only problem. So, let's assume they found a cure for ASD but not homosexuality. Well, obviously I want it. And the idea that I'd be losing something (besides whatever side effects come from systematic love, etc.) is kind of like when queer-identified people try to pretend that all straight people are incredibly two-dimensional and gender-normative. It's possible to be a normal person who is intense about things and doesn't like parties that much and has serious experiences with color. That's the kind of normal person I'd want to be. So I could still do the same things. Also if I want I could be a social worker, a pastor, or a Latin teacher, or go and live in a foreign country without dropping out behind my eyes. Also I'd be a better faker so I'd probably be better at being gay. Who knows if I'd be gay if I wasn't ASD--so maybe you could kill two birds with one stone.
The problem is, though, that this is just an exercise, and curing ASD isn't very likely. What they are working on is just having people not be born. If that's your question, I would rather have been born, but thanks. Also, this isn't a question I think about very much because I have other stuff to do. And it makes me feel uncomfortable that you would ask me something like this. Can I ask you something overly personal and completely irrelevant about yourself?
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