attackfish (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
attackfish) wrote2010-06-17 01:48 am
attackfish) wrote2010-06-17 01:48 am
Entry tags:
If I Woke up Tomorrow Without Disabilities...
On a side note to the current discussion going on in fandom over some really really ablist undertones to the hurt\comfort bingo, kaz has written an essay about the popular fiction trope of curing a disability. Instead of condemning the whole idea as irredeemably offensive because of the way it’s just about always handled, she goes into what she, as a person with disabilities, would like to see in any kind of fic (or original work) in which this trope is invoked, and how this can be used to deepen the understanding of living with disabilities, and would also fascinate her as a disabled reader.
Instead of writing fic on the subject, I may someday do that, but it’s the wee small hours here, and my brain isn’t working well enough for that, I’m going to conduct a little thought experiment. Many people with disabilities have an abiding resentment to the idea of a cure. Disability has become part of our identity, and besides, it’s society that needs to change. I’ve never been one of these people. I hate, hate, hate the patronizing notion that people with disabilities need to be “fixed” to be happy or to lead fulfilling lives, or that we need to be striving for a cure for our disabilities instead of for equality while we still have them, but if there were a cure for my disabilities, I’d take it in a second. If such a cure existed, What would my life be like? What would my life be like if I woke up tomorrow without disabilities?
In the interests of simplicity, I’ll be giving up all of my disabilities instead of just one, but like many people with disabilities, I have several. Actually, before we begin, I’d like to note that addressing this is something I’d like to see in any work where someone loses a disability. Do they have more than one? I’d love to see someone lose one or several disabilities and retain one or several others.
If I woke up tomorrow without disabilities, my whole way of relating to the world would have to change. The social model of disability says that disability isn’t determined by medical problems, per se, but by society’s reaction two them. Society is designed to cater to a certain ability level, and people with disabilities run into trouble because their natural abilities are different from this standard. For example, if most people had four hands, the world would be set up for four handed people, and people with two hands would be disabled, unable to drive a car designed for “normal” four handed people, for example, or open this world’s equivalent of child proof medicine bottles. Whereas if most people didn’t have any hands, the world would be set up for hand-less people, and it wouldn’t be a disability. All of a sudden, society would be set up to accommodate my ability level, but my carefully designed life would not be. I wouldn’t have to schedule all of my classes around which buildings I can’t access because of their mold content or chemical outgassing, or scientific experiments they house, or I could even go to a much better out of state school, because I wouldn’t have to live at home, but I would have to reorder my whole day. I'd lose my handicapped parking and suddenly have to pay for parking. I wouldn't be invisible on the street, and thus I might actually, *gasp* have to deal with people. The sudden ability to handle visual data would probably boggle my mind for a long time. I'd have to actually learn how to shop instead of float around a clothing store in a drugged haze to prevent a seizure while my mom pretends I'm a doll. I would have to turn off the little voice in my head constantly planning every single activity, saying "I can't, I can't, I cant..."
I would have to make a pretty radical paradigm shift. Suddenly, I wouldn’t have to think of my health first and every single other thing in the world second. My first consideration for every decision from picking out a career to whether to snag a free sample of olives at the grocery store wouldn’t be made first and foremost on the basis of whether or not I could physically do something. I have never thought that way before. I’ve had my disability my whole life. So many choices would suddenly open up for me that I’d probably take a while just to absorb and plan and pig out on foods I can’t now eat.
It wouldn’t just be the huge life-changing things either. I could look my cousin in the face when she and I talk. Currently her odd mannerisms and my visual processing disorder combine to have me talking to the insides of my eyelids in her general direction and her answering for some reason. I could walk down the street and not have to worry about someone “helping” me by picking up my oxygen concentrator without talking to me first. I could travel somewhere with a friend without becoming invisible and having everyone assume said friend is my care-taker. I could go out to eat and not pester the waiter for ingredient lists. And you know what, I would be able to turn off the part of my brain that does all that, which would be really restful for a change.
I would also suddenly become an outsider to the disabled community, from which I draw so much support. I would lose a main social bulwark of my life. Also, would I be allowed still to be personally offended by blatant ablism, or would I suddenly only be allowed to be angry on behalf of the currently disabled, and not for my past self? What would I identify as? One of the able-bodied, most of whom have always been able-bodied, or only very temporarily disabled? One of the disabled even though I no longer have a disability to my name?
For much of my life, I’ve drawn a huge amount of strength from the way the world has seemed against me and my disabilities. I’ve constantly had to fight both society and my disability, and this has rooted into me a stubborn will. Would I lose that desperate need to win and show everybody I can if everybody didn’t think it was impossible anymore?
I would probably suddenly hear a whole new sort of ablist comment all the time too, about how lucky I am, how glad I must be to be normal now, how. How they’re so glad the ordeal is over. How there isn’t a cure for that person over there with that disability, how sad. Would I smile and nod, or would I have the courage to tell the people saying these things where they could stick them?
As happy as I would be not to live with my myriad disabilities, I would suddenly be adrift, and it would take me a long time to come to terms with the sudden possibilities open to me.
No matter what, even being cured tomorrow wouldn’t erase a lifetime of having lived with multiple disabilities. They have shaped me. They’ve made me stubborn and self-assured, defiant, and even introverted by shaping the circumstances of my life. They’ve shaped my family and friendships. Not only would I always be someone who had once had disabilities, I would also have to deal with the legacy of much greater dependence on my parents and family. My mother would still be terrified at the thought of me leaving home, because subconsciously, I would still be her sickly youngest. My dad would still try to move the family wherever I was going, to be close in case of emergency. My siblings would always be more protective of me then they are of each other. My friends would always have the education on what living with disabilities was like and the little voice in their head saying “Fish couldn’t do this, because of this reason.”
Perhaps most telling of all, I rarely think about being cured, except when I read the ingredient list of a potential new food and find it has something I can’t eat in it. Usually I have dreams about society changing, about the way my world has to work suddenly making sense to others, about perfume being outlawed, about the American Bar Association not having its ridiculous absence policy that bars many of the best and brightest chronically ill people from ever becoming lawyers utterly needlessly, of people not laughing at the twinkie defense. I’m a queer, almost mind-blowingly liberal woman, I got to say, if I ate a twinkie, I’d not be responsible for my actions. Many foods, including ones with as many preservatives and artificial flavorings as twinkies would send me into a violent seizure that looks a lot like a psychotic break... Yeah, you get the point. The cure isn’t the be all and end all of most people with disabilities’ dreams. It only seems to be on the mind of the able-bodied, as an expression of discomfort with dealing with people with disabilities. So long as this is the reason for the presence of the cure in a work of fiction, it's doomed to offensive failure. If this is no longer the reason, if the creator understands the trope's history and works against it with the realization of people with disabilities as full human beings who can have happy endings with their disability intact, a fic with a cure in it has the potential to be a thing of beauty.
All told, I don’t know entirely what my life would be like if I suddenly had no disabilities, but it wouldn’t be a pure improvement. It would be fraught with conflict, and though I’d gladly be cured, I know that it would only be the beginning of a story, not it’s conclusion. And it would be a fascinating story. The sort of cure for a character with disabilities in fanfiction that I would like to see wouldn’t be the happily ever after, but the beginning, the once upon a time. These stories would address what it means to be formerly disabled, and they wouldn’t make the cure some sort of reward. They wouldn’t be the best thing that ever happened to the character, or the only way to have a happy ending. They wouldn’t be a way to “fix” the character so that they can be just like every body else, and “able to have a full life” as if people with disabilities can’t have full lives. One of these days, I’d love to read a work where the cure is given against the will of the suddenly able-bodied character, and have them struggle with the mixed feelings that come from that. In short, the cure would be part of the adventure, not some tacked on bit of rotten fluff in the perfect happy ending.
Oh God, I’m rambling. I’m incoherent, I need to be asleep, and I’m rambling. I’m trying to have deep thoughts, and they’re just coming out as vague, self-indulgent anger. I suppose this realization marks the end of this attempt at an essay. Anyway, I just want to say, I’d love to see some of the issues a cure for a character's disabilities would present brought up in any fiction dealing with such a topic. If I saw that, might not write off all fiction with a cure in it after all.
ETA: I made some rather snarky comments in this post about people who don't want their disability to go away. I was talking about people with physical disabilities as opposed to neurological or psychiatric ones, and as someone with all three of the above, I really should know better. People with neurological and psychiatric disabilities often find it much harder to tell where who they are ends and where their condition begins. If losing your disability means suddenly becoming someone else, someone who isn't you anymore, would you want to be cured? Me neither. The cures I wouldn't even consider refusing are the ones for my physical disabilities like my immune disorders and allergies and circulation problems, and my seizures, but the disabilities that come from the brain damage caused by said seizures, I would be loath to give up.
kaz has written an essay about the popular fiction trope of curing a disability. Instead of condemning the whole idea as irredeemably offensive because of the way it’s just about always handled, she goes into what she, as a person with disabilities, would like to see in any kind of fic (or original work) in which this trope is invoked, and how this can be used to deepen the understanding of living with disabilities, and would also fascinate her as a disabled reader.Instead of writing fic on the subject, I may someday do that, but it’s the wee small hours here, and my brain isn’t working well enough for that, I’m going to conduct a little thought experiment. Many people with disabilities have an abiding resentment to the idea of a cure. Disability has become part of our identity, and besides, it’s society that needs to change. I’ve never been one of these people. I hate, hate, hate the patronizing notion that people with disabilities need to be “fixed” to be happy or to lead fulfilling lives, or that we need to be striving for a cure for our disabilities instead of for equality while we still have them, but if there were a cure for my disabilities, I’d take it in a second. If such a cure existed, What would my life be like? What would my life be like if I woke up tomorrow without disabilities?
In the interests of simplicity, I’ll be giving up all of my disabilities instead of just one, but like many people with disabilities, I have several. Actually, before we begin, I’d like to note that addressing this is something I’d like to see in any work where someone loses a disability. Do they have more than one? I’d love to see someone lose one or several disabilities and retain one or several others.
If I woke up tomorrow without disabilities, my whole way of relating to the world would have to change. The social model of disability says that disability isn’t determined by medical problems, per se, but by society’s reaction two them. Society is designed to cater to a certain ability level, and people with disabilities run into trouble because their natural abilities are different from this standard. For example, if most people had four hands, the world would be set up for four handed people, and people with two hands would be disabled, unable to drive a car designed for “normal” four handed people, for example, or open this world’s equivalent of child proof medicine bottles. Whereas if most people didn’t have any hands, the world would be set up for hand-less people, and it wouldn’t be a disability. All of a sudden, society would be set up to accommodate my ability level, but my carefully designed life would not be. I wouldn’t have to schedule all of my classes around which buildings I can’t access because of their mold content or chemical outgassing, or scientific experiments they house, or I could even go to a much better out of state school, because I wouldn’t have to live at home, but I would have to reorder my whole day. I'd lose my handicapped parking and suddenly have to pay for parking. I wouldn't be invisible on the street, and thus I might actually, *gasp* have to deal with people. The sudden ability to handle visual data would probably boggle my mind for a long time. I'd have to actually learn how to shop instead of float around a clothing store in a drugged haze to prevent a seizure while my mom pretends I'm a doll. I would have to turn off the little voice in my head constantly planning every single activity, saying "I can't, I can't, I cant..."
I would have to make a pretty radical paradigm shift. Suddenly, I wouldn’t have to think of my health first and every single other thing in the world second. My first consideration for every decision from picking out a career to whether to snag a free sample of olives at the grocery store wouldn’t be made first and foremost on the basis of whether or not I could physically do something. I have never thought that way before. I’ve had my disability my whole life. So many choices would suddenly open up for me that I’d probably take a while just to absorb and plan and pig out on foods I can’t now eat.
It wouldn’t just be the huge life-changing things either. I could look my cousin in the face when she and I talk. Currently her odd mannerisms and my visual processing disorder combine to have me talking to the insides of my eyelids in her general direction and her answering for some reason. I could walk down the street and not have to worry about someone “helping” me by picking up my oxygen concentrator without talking to me first. I could travel somewhere with a friend without becoming invisible and having everyone assume said friend is my care-taker. I could go out to eat and not pester the waiter for ingredient lists. And you know what, I would be able to turn off the part of my brain that does all that, which would be really restful for a change.
I would also suddenly become an outsider to the disabled community, from which I draw so much support. I would lose a main social bulwark of my life. Also, would I be allowed still to be personally offended by blatant ablism, or would I suddenly only be allowed to be angry on behalf of the currently disabled, and not for my past self? What would I identify as? One of the able-bodied, most of whom have always been able-bodied, or only very temporarily disabled? One of the disabled even though I no longer have a disability to my name?
For much of my life, I’ve drawn a huge amount of strength from the way the world has seemed against me and my disabilities. I’ve constantly had to fight both society and my disability, and this has rooted into me a stubborn will. Would I lose that desperate need to win and show everybody I can if everybody didn’t think it was impossible anymore?
I would probably suddenly hear a whole new sort of ablist comment all the time too, about how lucky I am, how glad I must be to be normal now, how. How they’re so glad the ordeal is over. How there isn’t a cure for that person over there with that disability, how sad. Would I smile and nod, or would I have the courage to tell the people saying these things where they could stick them?
As happy as I would be not to live with my myriad disabilities, I would suddenly be adrift, and it would take me a long time to come to terms with the sudden possibilities open to me.
No matter what, even being cured tomorrow wouldn’t erase a lifetime of having lived with multiple disabilities. They have shaped me. They’ve made me stubborn and self-assured, defiant, and even introverted by shaping the circumstances of my life. They’ve shaped my family and friendships. Not only would I always be someone who had once had disabilities, I would also have to deal with the legacy of much greater dependence on my parents and family. My mother would still be terrified at the thought of me leaving home, because subconsciously, I would still be her sickly youngest. My dad would still try to move the family wherever I was going, to be close in case of emergency. My siblings would always be more protective of me then they are of each other. My friends would always have the education on what living with disabilities was like and the little voice in their head saying “Fish couldn’t do this, because of this reason.”
Perhaps most telling of all, I rarely think about being cured, except when I read the ingredient list of a potential new food and find it has something I can’t eat in it. Usually I have dreams about society changing, about the way my world has to work suddenly making sense to others, about perfume being outlawed, about the American Bar Association not having its ridiculous absence policy that bars many of the best and brightest chronically ill people from ever becoming lawyers utterly needlessly, of people not laughing at the twinkie defense. I’m a queer, almost mind-blowingly liberal woman, I got to say, if I ate a twinkie, I’d not be responsible for my actions. Many foods, including ones with as many preservatives and artificial flavorings as twinkies would send me into a violent seizure that looks a lot like a psychotic break... Yeah, you get the point. The cure isn’t the be all and end all of most people with disabilities’ dreams. It only seems to be on the mind of the able-bodied, as an expression of discomfort with dealing with people with disabilities. So long as this is the reason for the presence of the cure in a work of fiction, it's doomed to offensive failure. If this is no longer the reason, if the creator understands the trope's history and works against it with the realization of people with disabilities as full human beings who can have happy endings with their disability intact, a fic with a cure in it has the potential to be a thing of beauty.
All told, I don’t know entirely what my life would be like if I suddenly had no disabilities, but it wouldn’t be a pure improvement. It would be fraught with conflict, and though I’d gladly be cured, I know that it would only be the beginning of a story, not it’s conclusion. And it would be a fascinating story. The sort of cure for a character with disabilities in fanfiction that I would like to see wouldn’t be the happily ever after, but the beginning, the once upon a time. These stories would address what it means to be formerly disabled, and they wouldn’t make the cure some sort of reward. They wouldn’t be the best thing that ever happened to the character, or the only way to have a happy ending. They wouldn’t be a way to “fix” the character so that they can be just like every body else, and “able to have a full life” as if people with disabilities can’t have full lives. One of these days, I’d love to read a work where the cure is given against the will of the suddenly able-bodied character, and have them struggle with the mixed feelings that come from that. In short, the cure would be part of the adventure, not some tacked on bit of rotten fluff in the perfect happy ending.
Oh God, I’m rambling. I’m incoherent, I need to be asleep, and I’m rambling. I’m trying to have deep thoughts, and they’re just coming out as vague, self-indulgent anger. I suppose this realization marks the end of this attempt at an essay. Anyway, I just want to say, I’d love to see some of the issues a cure for a character's disabilities would present brought up in any fiction dealing with such a topic. If I saw that, might not write off all fiction with a cure in it after all.
ETA: I made some rather snarky comments in this post about people who don't want their disability to go away. I was talking about people with physical disabilities as opposed to neurological or psychiatric ones, and as someone with all three of the above, I really should know better. People with neurological and psychiatric disabilities often find it much harder to tell where who they are ends and where their condition begins. If losing your disability means suddenly becoming someone else, someone who isn't you anymore, would you want to be cured? Me neither. The cures I wouldn't even consider refusing are the ones for my physical disabilities like my immune disorders and allergies and circulation problems, and my seizures, but the disabilities that come from the brain damage caused by said seizures, I would be loath to give up.
reality of ADHD-my own
(Anonymous) 2010-08-28 06:26 pm (UTC)(link)Re: reality of ADHD-my own
Re: reality of ADHD-my own
(Anonymous) 2010-08-29 03:29 am (UTC)(link)Re: reality of ADHD-my own