Entry tags:
SF and ablism (or: a not-as-such brief thought)
I'm having sort of a genre related thought about ablism.
Right now I'm considering sci-fi, particularly SF set in the far future when humanity is far more technologically developed and there's sort of a theme that follows in this subset of the genre that bothers me a lot when I come across it, and that's the idea that nobody in the future will ever be disabled. Disease have been erased! Genetic abnormalities sorted out! There's a pill or treatment or medi-pod for anything that ails you!
It seems as though when science fiction envisions a better, or at least more advanced, version of humanity it is one without disability, and thus one without disabled people. When you imagine a future without disability, it is a future in which you imagine that there are no disabled people.
I'm sure someone will rush to say, "No! No! They'll exist, they just won't be disabled, that's all! They'll be cured in the future, isn't that great?"
Not so great, actually.
First, because we are not in the future, thus when you say such statements, you're impacting actual people in here and now. You're saying, "Wow, won't it be great when you're not like that anymore. When you're different?" Which is saying, "The way you are now is not okay."
Second, because your idea of "great" is finding ways to make disabled people "normal". I put scare quotes around normal because, well, normal is about the most oppressive, offensive, evil word in my vocabulary.
More people have suffered more evil and oppression on this Earth because they didn't fit somebody else's idea of "normal" than any other single thing I can think of. "Oh, look, people of a different culture and race! They're not normal! Let's shoot them with these nifty guns we have and take over their lands and then tell complete lies about them!" or "Oh, look, those other people there are having sexual relations with the wrong people. They're not normal. Let make nasty laws and beat them up!"
A gross oversimplification, of course, because oppression is ever so much more complex, layered, and insidious than all that. But I hope that it makes the point. People in general value "normal" without stopping in many instances to wonder if it's worth valuing - both here and in the future and the literature of the fantastic and the future.
This future we imagine, this disability-free ideal place is not one in which we've decided to stop narrowing the definition of normal and able, in which we've decided to stop shoehorning based on ability and disability decided to expand what we consider to be just another part of the wide spectrum of collective human ability. This future is one in which we (for the value of "we" which is society/humanity) pick the limitations of ability, of normal, and finally manage squeeze everyone into it ability-wise. And often, it seems, these same stories tell of a future in which we've finally squeezed everyone into the same culture and same gender definitions and sexuality. At long last, homogeneity!
This future is not one in which we have better definitions, just better medicine. In those worlds, our science evolves, our compassion and tolerance and understanding do not.
I do not like this future. It scares me and it erases so, so many people.
Why do so many writers assume that disability wouldn't follow us to the stars? What disabilities that don't even exist today would exist tomorrow? What would be reclassified as a disability or not a disability?
It seems to me that there is some confusion due to ignorance and stereotypes about disability between "normal" and "functioning".
Function is, in my own Meg-specific definition, being able to do what you want/need to do in a way that works for you. If that means using an assistive device or taking a bit longer or using different methods, that all fits under "functioning". You can have levels of functioning - because some stuff works better than others - but function is relative. It all depends on what works for you, what gets the job done for you.
Then there's normal. Normal is being able to do what others want you to do in a way that other people expect you to do it, and it often is the opposite of functional. Normal is an ever moving goal post of other people's expectations. It's the cry of "but you can walk, why are you using a wheelchair?" to a person with a pain disorder or spinal injury or some other invisible disability. It's the cry of "why can't you just get over it?" to someone who has depression or "that's not that bad, at least you didn't go to war!" to someone with PTSD. It's insisting that meatspace/offline activities count for more than, say, online ones even though online activities (academic classes, activism work, creative endeavors) are often more accessible (thus granting more function).
Alas, society values normal over functional and so does sci-fi many times.
Lose a limb? We'll regrow it! Get paralyzed in a space accident? We'll fix that, hop in a medical pod/chamber/box o' insta-healing! Blind? Here, have some nanobots. Deaf? Oh, there's a pill for that. You, too, can be made Normal.
Never you mind that you don't see a lot of mental disabilities/disorders. I can't remember the last time I read about main characters who have, say, ADHD or autism spectrum disorder or Down syndrome or an eating disorder. Because apparently these people won't be with us in the future, and they certainly won't be allowed aboard Spaceship Normal.
What's worse? Sci-fi can be the kind of genre that could really inspire others to imagine a different course of events, a different society.
I can see the value in imagining a future with better ways to help people have greater function. I can see the value in imagining sidewalks that automatically adjust themselves to better suit use of assistive devices or the value of imagining classrooms where there are computer/laptop screens made for those students who may be dyslexic or dyscalculic to help them better read and do math.
Because that? Doesn't value normal over function, it doesn't seek to reform people so that nobody ever needs an assistive device or that nobody ever is dyslexic or dyscalculic. It doesn't value the way one group of people accomplishes certain tasks over the way others accomplish them. In fact, it values a society that broadens its ranges, that instead of telling these people to adapt to it decides to adapt to them by concerning itself with accessibility, with function over inflexible, rigid ideas of how something ought to be done, or what people ought to look like, or how they ought to live.
I'd like to find more SF (or even fantasy) that talks about different worlds, that talks differently about people with disabilities.
What things in SF/F bother you from an ablism standpoint, readers? What things do you encounter over and over and wish would stop? What things do you want to encounter (or encounter more of)?
If anyone has any book/story recommendations, that would be absolutely wonderful and I'd love to hear them! Which authors and works get it right in your opinion and why?
Right now I'm considering sci-fi, particularly SF set in the far future when humanity is far more technologically developed and there's sort of a theme that follows in this subset of the genre that bothers me a lot when I come across it, and that's the idea that nobody in the future will ever be disabled. Disease have been erased! Genetic abnormalities sorted out! There's a pill or treatment or medi-pod for anything that ails you!
It seems as though when science fiction envisions a better, or at least more advanced, version of humanity it is one without disability, and thus one without disabled people. When you imagine a future without disability, it is a future in which you imagine that there are no disabled people.
I'm sure someone will rush to say, "No! No! They'll exist, they just won't be disabled, that's all! They'll be cured in the future, isn't that great?"
Not so great, actually.
First, because we are not in the future, thus when you say such statements, you're impacting actual people in here and now. You're saying, "Wow, won't it be great when you're not like that anymore. When you're different?" Which is saying, "The way you are now is not okay."
Second, because your idea of "great" is finding ways to make disabled people "normal". I put scare quotes around normal because, well, normal is about the most oppressive, offensive, evil word in my vocabulary.
More people have suffered more evil and oppression on this Earth because they didn't fit somebody else's idea of "normal" than any other single thing I can think of. "Oh, look, people of a different culture and race! They're not normal! Let's shoot them with these nifty guns we have and take over their lands and then tell complete lies about them!" or "Oh, look, those other people there are having sexual relations with the wrong people. They're not normal. Let make nasty laws and beat them up!"
A gross oversimplification, of course, because oppression is ever so much more complex, layered, and insidious than all that. But I hope that it makes the point. People in general value "normal" without stopping in many instances to wonder if it's worth valuing - both here and in the future and the literature of the fantastic and the future.
This future we imagine, this disability-free ideal place is not one in which we've decided to stop narrowing the definition of normal and able, in which we've decided to stop shoehorning based on ability and disability decided to expand what we consider to be just another part of the wide spectrum of collective human ability. This future is one in which we (for the value of "we" which is society/humanity) pick the limitations of ability, of normal, and finally manage squeeze everyone into it ability-wise. And often, it seems, these same stories tell of a future in which we've finally squeezed everyone into the same culture and same gender definitions and sexuality. At long last, homogeneity!
This future is not one in which we have better definitions, just better medicine. In those worlds, our science evolves, our compassion and tolerance and understanding do not.
I do not like this future. It scares me and it erases so, so many people.
Why do so many writers assume that disability wouldn't follow us to the stars? What disabilities that don't even exist today would exist tomorrow? What would be reclassified as a disability or not a disability?
It seems to me that there is some confusion due to ignorance and stereotypes about disability between "normal" and "functioning".
Function is, in my own Meg-specific definition, being able to do what you want/need to do in a way that works for you. If that means using an assistive device or taking a bit longer or using different methods, that all fits under "functioning". You can have levels of functioning - because some stuff works better than others - but function is relative. It all depends on what works for you, what gets the job done for you.
Then there's normal. Normal is being able to do what others want you to do in a way that other people expect you to do it, and it often is the opposite of functional. Normal is an ever moving goal post of other people's expectations. It's the cry of "but you can walk, why are you using a wheelchair?" to a person with a pain disorder or spinal injury or some other invisible disability. It's the cry of "why can't you just get over it?" to someone who has depression or "that's not that bad, at least you didn't go to war!" to someone with PTSD. It's insisting that meatspace/offline activities count for more than, say, online ones even though online activities (academic classes, activism work, creative endeavors) are often more accessible (thus granting more function).
Alas, society values normal over functional and so does sci-fi many times.
Lose a limb? We'll regrow it! Get paralyzed in a space accident? We'll fix that, hop in a medical pod/chamber/box o' insta-healing! Blind? Here, have some nanobots. Deaf? Oh, there's a pill for that. You, too, can be made Normal.
Never you mind that you don't see a lot of mental disabilities/disorders. I can't remember the last time I read about main characters who have, say, ADHD or autism spectrum disorder or Down syndrome or an eating disorder. Because apparently these people won't be with us in the future, and they certainly won't be allowed aboard Spaceship Normal.
What's worse? Sci-fi can be the kind of genre that could really inspire others to imagine a different course of events, a different society.
I can see the value in imagining a future with better ways to help people have greater function. I can see the value in imagining sidewalks that automatically adjust themselves to better suit use of assistive devices or the value of imagining classrooms where there are computer/laptop screens made for those students who may be dyslexic or dyscalculic to help them better read and do math.
Because that? Doesn't value normal over function, it doesn't seek to reform people so that nobody ever needs an assistive device or that nobody ever is dyslexic or dyscalculic. It doesn't value the way one group of people accomplishes certain tasks over the way others accomplish them. In fact, it values a society that broadens its ranges, that instead of telling these people to adapt to it decides to adapt to them by concerning itself with accessibility, with function over inflexible, rigid ideas of how something ought to be done, or what people ought to look like, or how they ought to live.
I'd like to find more SF (or even fantasy) that talks about different worlds, that talks differently about people with disabilities.
What things in SF/F bother you from an ablism standpoint, readers? What things do you encounter over and over and wish would stop? What things do you want to encounter (or encounter more of)?
If anyone has any book/story recommendations, that would be absolutely wonderful and I'd love to hear them! Which authors and works get it right in your opinion and why?
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"How does the cyborg feel about his own body? There's a dream of transcending your body. I don't buy that. I have chronic pain, and -- you should enjoy your body. I can't replace my body with a new one. Okay, I'll talk about Avatar... giving up my old body to get a new perfect one, I don't buy that, I don't want that dream."
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That is such a great quote. And I'd love to see those panel notes (I couldn't find a link on your DW, but get if you've been way busy). I couldn't go to Wiscon and I've seen other things that made me think that there would've been so many awesome folks to meet and awesome things to talk about (flailing and failing of SOME PEOPLE notwithstanding).
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You're raising some really good points here, and you're definitely making me think.
I think that one thing that is probably way under-explored in terms of portraying disability in Sci-Fi, is, if you want to portray a Utopian society, why not incorporate a social model of disability, in which disability is not erased, but in which technology and social innovations increase access, etc, so that PWD are more able to make the choice to be visible and active members of a society that is not defined, by default, as abled.
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And yeah, THAT RIGHT THERE. That's such a good way of putting what I wanted to say all along. That's exactly what I'd love to see more of, even if it wasn't a perfectly Utopian society. I'd love to see what such a society would look like, and what would be changed from current societies.
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I write about disability (or rather, include disabled people) in my fiction (some fanfiction, some original) because I think it's important and I think it likely always will be a part of life. It certainly surrounds my life, more than I usually acknowledge. There's a strong temptation for me to write disability out of it, though: to create a world where I wouldn't have to fear losing my sight, or losing more of my hearing, where I wouldn't have to sit on the end of a phone line and hear my mother tell me she can no longer read books and not be able to do a damn thing. When writing, we control the world entirely: I could write out the things I fear, and keep it safe. If my mother wrote fiction, I couldn't condemn her for making a world in which she wouldn't have to go through this.
Personally, obviously, I don't write about a safe world. I don't believe in it. If I'm not going to fear blindness or deafness or cancer or not being able to walk, there'll be something else to fear. There always is. Still, I wonder how much of the lack of representation of disability is not because writers are dismissing people who are "not normal" -- though that's the effect -- but because people write out what scares them.
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I'd love to see those fics. What fandoms do you write for?
If my mother wrote fiction, I couldn't condemn her for making a world in which she wouldn't have to go through this.
That's a damn good point and something I really did not think about, and for that, I fail. Hard. I was addressing able-identifying writers erasing disability, and didn't stop to think about how the situation would change if the writer were a PWD. So thank you for reminding me of this.
Still, I wonder how much of the lack of representation of disability is not because writers are dismissing people who are "not normal" -- though that's the effect -- but because people write out what scares them
That's something definitely worth thinking about. I couldn't begin to say, but it is something to consider. Very valid point.
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An anecdote: I stutter. A while back I watched some clips from a Doctor Who episode that had a character who stuttered. His presentation pissed me off (various types of disability fail) so I went Googling to see if anyone else out there had had the same issues with that ep.
What did I find? People talking about how unrealistic it was to have a character who stuttered because that ep was set in the future and surely they'd have cured that by then!
I really cannot express just how fucking horrible<\em> that made me feel.
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I really cannot express just how fucking horrible that made me feel.
1. If it's appropriate: *HUGS*. I am so sorry that both the show and the fans failed so epically right in your face.
2. What ep of Doctor Who was this? If it is one I haven't seen (I've seen MOST of New Who and a bit of Classic Who), I will so totally try to find it so that, if you like, we can have a discussion about why it fails. I'd especially love to hear your further thoughts on the subject. If that's okay. I can understand why you might not want to approach the topic again.
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(Just wanting clarity. Personally I could see motor disabilities being compensated for medically, since it's what medicine concentrates on, but there's definitely far too little mental disabilities in speculative fiction!)
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I'd say it depends on what you mean by "removing the disability" and how it's done in the story. I think there'd be a difference between a biological assistive device and complete erasure of that particular disability. Let's say one had nanobots injected as a treatment to give function to a person - but one would lose that function without these nanobots, I don't know if I would consider that erasing the disability.
And there might still be issues, such as - if you bleed too much would you lose too many nanobots? Would you need to take supplements or some other kind of treatment so your body didn't reject them? Would you need to eat more food for energy requirements or do certain things to maintain these nanobots?
Where as if the nanobots completely "restored" or "healed" the disability so that it no longer existed and they offered no additional functioning to them after that, I personally would think differently. But that's me personally and issues I am not even beginning to pick up on.
I should clarify that what brought up this post was a book I've recently read that was SF and featured a main character who was, through most of the book, disabled and not evil and generally quite awesome and ass kicking and made of win and a hero among his people and, oh yeah, he was saving his whole damn planet.
But then? Like, five chapters from the end, he finds a spaceship, steps in a medical pod and comes out completely "restored". And I kind of felt like it was a way for the writer to QUIT having to write about a person with disabilities, to QUIT having to think about things and just make shit blow up and finish the book. It just really upset/disappointed me. In that instance, I thought it was hurtful. I didn't see why that disability needed to be suddenly "healed" and it didn't even make that much sense in the context of the book for the character to have done it.
In that instance, yeah, I was not happy with the way that played out and find things like that to be part of the way SF erases disabled people.
but there's definitely far too little mental disabilities in speculative fiction!
This right here x 10000.
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here via metafandom
I got into fandom in the first place because I was trying to explain the absence of people like me in Harry Potter and all the possible answers disturbed me. Now i'm looking for myself in Star Trek among disturbing images of Captain Pike. :-|
Re: here via metafandom
And wow, that REALLY sucks re: Harry Potter and Star Trek. Dare I ask just HOW disturbing the images of Captain Pike get?
Re: here via metafandom
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I had just reached the point in your post where I started wondering that when you brought it up! Because, yeah, it would make sense that in the future some disabilities would be absent or lessened (the way myopia is no longer a disability because it can be compensated for), but just like dyslexia and electricity allergy are more disabling now than earlier in history, there probably would be disabilities in the future related to things we don't have now. Using Star Trek as an example (and not touching the current presentation of disability in ST), there could be allergies to replicated material, or molecular structure unsuited to teleporters, or inability to see projected holographs as intended, or space-induced pain issues...
I think largely it's a question of the SF writers trying to create better futures, and ending up assuming futures where people are more like them, in the belief that "what's good for me is good for everybody."
Anyway, what I wanted to say was, thank you so much for this post, which really made me think!
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I'd point out (and it's an assumption I've made in the past) that myopia being a disability and how severe is something that depends on if you've got access to glasses and contacts. I know a lot of great organizations that work on trying to get prescription glasses to people who just don't have access to them otherwise, both inside the U.S. and outside. I mean, if one didn't have insurance, I'm not sure HOW you'd get glasses or afford them at the prices that most places charge. Having been uninsured before getting domestically partnered, I know that I had just one pair of glasses that I'd had for five years, the script was out of date (my eyes had changed since then) and I sort of had to just work around vision issues because I could NOT get new ones. I couldn't even afford the eye appointment.
That said, I do understand what you meant, and yeah, I definitely agree that what is and isn't a disability will change and would love to see more authors explore that.
I'm glad you liked my post and found it useful!
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Lois McMaster Bujold's 'Vorkosigan' series has a disabled main character. I won't comment on how well or poorly she presents the disability, because it wasn't something I was thinking about last time I read any of the books, but I have seen them mentioned in other discussions.
She also has a stand-alone called 'Falling Free' which is about a genetically engineered group of people who are adapted for free-fall, and have arms instead of legs as their lower limbs. These people are better able to manage their native enviroment, but cope very badly in gravity - this presumably fits the exploring new disabilities question.
Brian Aldiss' 'Barefoot in the Head' may qualify - the main character was hit by the effects of a bomb that dropped an LSD type drug, and is somewhat divorced from what I consider to be reality. I found it a fascinating read, but was very hard going.
Bob Shaw's 'Dagger of the Mind' has a main character who thinks that he is developing a mental illness, but as it turns out to be something else entirely, it probably counts as getting it wrong (I am unsure on this, as it is probably 20 years since I read it, but some of the story has stuck with me)
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If I were writing about the far, far future, I would probably not include characters with Down's syndrome or cystic fibrosis, because I do not believe society as a whole is going to choose to preserve those things in the name of genetic diversity. Down's syndrome severely limits learning ability in enough people that very few people will actively choose that for their children and cystic fibrosis is painful. I am blanking on the name of what Stephen Hawking has, but I think that they will want to prevent that one, too, because even with the best assistive devices, functionality is severely limited, and the condition is progressive--it gets worse and eventually kills most people. People are not going to want things for their children that will shorten their lives or involve a lot of pain, even if there are ways to improve function. Real assistive technology for a lot of these diseases amounts to curing them.
A lot of things that cause disabilities are the result of prenatal insults to the fetus--chemical exposures, unnecessary stresses, things we don't know about yet. I believe people in the future will not choose to continue allowing those things to happen, because not all of the suffering these problems cause can be alleviated by assistive technology.
I don't personally believe this is a judgement on anyone currently living's fitness to live or moral worth. We don't think that people who were born with the shortened limbs characteristic of prenatal thalidomide exposure are morally unworthy of life, but we have stopped prescribing pregnant women thalidomide.
On the other hand, we may find that autism spectrum neurology and mood disorders are linked genetically with certain kinds of intelligence, and in a world where we do understand brain chemistry and anatomy better and can provide the right kind of teaching and assistance, these are things we might very well choose to preserve, because individual parents will want to have children who are very creative or highly technically skilled, and be more able and willing to accept the non-neurotypical nature of some kinds of giftedness. There is some evidence that attention deficit disorder was an evolutionary advantage in the distant past, and there is a case for autism spectrum disorders and mood disorders as being an evolutionary advantage in the future, particularly when one considers their increasing prevalence in technologically sophisticated societies--people often decry that as evidence that technological societies are bad, but maybe this is just how our brains are evolving.
FWIW, I have a mood disorder and a chronic pain disorder. The chronic pain disorder I would like to be cured of and would never wish on anyone. And it isn't even that bad. I also feel that way about my arthritis, which sometimes limits my mobility. I would not choose to use assistive technology if I could get rid of it. But if my choice was getting rid of the mood disorder AND my creativity and some of my intelligence, or keeping it, I'd keep it thanks.
There probably are also going to be new disabilities, particularly as we find new ways to injure ourselves. Most people would probably prefer to have their leg or arm regrown than get a prosthesis or do without, but some people will choose prosthetics that give them greater or different kinds of functionality (because some people will; they would today, if they could; some currently able-bodied people would like to be cyborgs) and some people may, due to radiation or other exposures, not be able to have their limbs regrown--what grows back is cancerous, or simply nonfunctional.
This is the kind of stuff I have considered in my own writing; I have had several characters in fantasy worlds who had been disabled by use or abuse of various sorts of magic, for that matter.
tl;dr -- I think we will not choose to preserve genetic disabilities that cause pain, eventual death, or seriously limit overall learning ability in a sizable number of people who get them. I think differences that are accompanied by different talents, even when those talents are accompanied by deficits in other areas, such as social skills or stability of mood, will probably be preserved. I also agree that new ways of becoming disabled will exist in the future.
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Well, this is where I think it gets into a tricky area. Because it assumes that this technology and knowledge will be 100% at preventing certain things - or that access to this technology/medicine/knowledge will be universally accessible to all people. That certainly isn't the case here on present day Earth.
And this gets into the question of what parents-to-be would do if they didn't have access to these things or if they failed.
I can't think - off the top of my head - of any technologies or medicines we have right now that are always 100% effective for EVERY single person in EVERY single instance. I don't see why this wouldn't be the case in the future - and I think in the case of SF literature, it would be good to explore this area and to think about this.
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Other thing I thought of
Re: Other thing I thought of
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I'm sure someone will rush to say, "No! No! They'll exist, they just won't be disabled, that's all! They'll be cured in the future, isn't that great?"
Let's actually imagine the universe as you introduced it. An universe without disabilities and without disabled people in it. So an universe like this doesn't have disabled people therefore they are not born. Just a preamble.
First, because we are not in the future, thus when you say such statements, you're impacting actual people in here and now. You're saying, "Wow, won't it be great when you're not like that anymore. When you're different?" Which is saying, "The way you are now is not okay."
I disagree. Some people may mean it this way, but I highly doubt that majority does. They are speaking about future and advancement in medicine and health care not about the situation now. Sure, sci-fi was mostly a mirror of our own age, but some debates and philosophizing is about future, such as the development in science and technologies. They are saying that future world may be able to cure what we are not able to do now. It's a point of view full of hope and joy which you're basically saying is wrong. Why is it? Why should be advancement in technology and science wrong?
Second, because your idea of "great" is finding ways to make disabled people "normal".
I think you're misinterpreting. It is not about making anyone "normal" as you say. It's about curing them, preventing the disabilities to happen. You say normal as if it's something offensive. Normal is something that is the norm. The norm can be wrong, like in our times, where anything that is different is wrong. But the norm in the future or in the sci-fi books can be different. "Different" people may not be mentioned because they may not be considered different. Such as skincolor. In many works I've read it's not mentioned. A lot of times even the skincolor of the main character is not mentioned nor is the race. They could be of any race, it's just not mentioned, thus not considered important. It could be the same deal with disabilities that are not actually impairing the character or influencing the story. The occam's razor is an important thing to use for a writer, you need to cut down to the important to keep the reader alert. In many works I've read the disabilities are also easier to deal with because of the development in science and technologies. Just think about Luke Skywalker from Star Wars. He got his hand chopped off, but because of advanced technology he got a robotic replacement.
This future is not one in which we have better definitions, just better medicine. In those worlds, our science evolves, our compassion and tolerance and understanding do not.
How can you say so? If people had no compassion they would kill disabled people like Spartans did. If people had no compassion they would not strive to find cure for diseases and ways to make the lives of disabled people easier.
I do not like this future. It scares me and it erases so, so many people.
I do not agree with this statement. It does not erase so many people. They would be different. They would not be born blind or they would not have malformed arm, but they would live. Are you saying that you do not agree with trying to find cures for this? That's how it seems to me.
Lose a limb? We'll regrow it! Get paralyzed in a space accident? We'll fix that, hop in a medical pod/chamber/box o' insta-healing! Blind? Here, have some nanobots. Deaf? Oh, there's a pill for that. You, too, can be made Normal.
Again, you're saying this. I feel like you want people to suffer instead of helping them. What's wrong with imagining a world where people who get hurt and suffer can get help? What's wrong with imagining that when I get hurt so badly there will be a way for me to be fully functional again? It is not about being normal. It's about being healthy. It's about having the possibility. It's about decision.
Never you mind that you don't see a lot of mental disabilities/disorders. I can't remember the last time I read about main characters who have, say, ADHD or autism spectrum disorder or Down syndrome or an eating disorder.
Again, I remember seeing and reading some books where characters evidently had some form of a disorder but it never was explicitly stated. Like it isn't in our current world. I don't go around advertising I have bipolar disorder, it's noone's business.
Up to last five paragraphs it seemed like you were arguing against curing, but in those last ones it seems like you're arguing against the possibility of eugenics and that I can agree with. The debate is starting now, I've just yesterday watched a discussion with one expert on genetics (I can't remember his name). What is ethic? How can and should we even tamper with human genome? Should we take it to ourselves to decide what gene is right and what is wrong? What outcome is acceptable and what isn't? I feel that these are the questions you're actually asking.
I recommend you read a book by Elizabeth Moon named Speed of Dark. It deals with this issue perfectly. The main character of the book is an autistic man who faces a decision whether to take a cure for his autism or not. This book formed my opinion on this issue.
a/n: I've replied to this as I've read it
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Perhaps this is down to my interpretation of the term 'disability', but to me it seems that proposing a future where disability can be treated / cured / undone / avoided is very different to saying that people in the present with disabilities are 'not okay'.
- disability is not a choice.
- the person is not the disability. The disability is not the person.
- saying that a disability is not okay, that it could or should be negated in the future, is a statement about that disability -- not about the people affected by it.
I hope I'm making sense! (This is an especially frustrating comment to write with a barely-functional 'b' key: apologies for typos.)
Also, good point above re the rise of new disabilities in the future. I'm trying to think of examples of things that weren't classed as 'disability' in the past but are now, because of changes in modern life: I'm only coming up with examples like travel-sickness and food intolerances.
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No, we are not doing this.
Via metafandom
Here via metafandom
On the other hand, I began writing other types of disabilityfic before I became partially sighted. I remember trying to figure out who should beta a story of mine that featured a blind character.
"I know!" I said. "I'll ask my friend Katharine. She does disability access work for museums. She's sure to know someone's who's blind."
It took me a minute to remember that Katharine is, in fact, blind.
I think that what scares off a lot of writers from doing disabilityfic is the need to do research. I've run across conversations about this among fanfic writers, and there's a lot of feelings of anxiety that arise among them - a feeling that they need to do tons of research and get their stories vetted by folks who have the disability. Of course it's always great to do research and to have a story betaed by somebody who knows the topic, but my goodness, I don't stop writing medieval fantasy just because there aren't any lords handy to check whether I've depicted them accurately.
A worse problem I've seen is people turning disabilityfic into problem stories. One novel I really, really liked as an emotionally disabled child was Peter Dickinson's "Annerton Pit," which was a thriller starring a blind protagonist. The story was about something other than the fact that the protagonist was blind. I thought that was neat. I'd like to see more of that type of thing in disabilityfic.
But as Janice Lester put it above: "The folks who could do it justice tend to be able-bodied and hamstrung by fears of appropriation and causing offence."
Here via metafandom
But if you think about the perspective of someone in the year 1910, or even 1950, they'd probably have imagined that we, in the 21st century (we are living in a period they imagined in their science fiction) would have cured a lot more diseases than is actually the case. In practice, we've reduced infant mortality, increased lifespan, and developed better drugs to maintain quality of life, control chronic illnesses. In the wealthier parts of the world, that is.
But of course, that means that a) people are living with disabilities which would once have killed them at or soon after birth, b) people who live longer, live longer with age-related illnesses and disabilities, and c) people with some diseases are surviving and developing complications which result from the longstanding activity of those diseases. Not to mention that new problems are surfacing, and old ones getting more common, as direct and indirect results of our lifestyle, technology and our very adaptation: MRSA is a great example. We came up with antibiotics, we overused antibiotics, and resistant bacteria came knocking.
And since all of that is true, I don't see why it wouldn't continue to be, even if we assume preventions or cures for a lot of today's common conditions exist in, say, 2100. You, or someone else above, mentioned that nanotechnology is a slew of new allergies just waiting to happen, and I'd assume that new industries in the future (especially those that involved coming into contact with substances from other worlds) could lead to all sorts of previously unknown allergies, highly specific industrial accidents/injuries and illnesses (like how many nurses are allergic to latex today).
Also, unless we're imagining a social, technological and medical utopia, then there'll be lots of people who can't afford prevention or cure. And for people living with chronic illnesses and disabilities, there may be high-tech new assistive devices, but those devices (and the microcomputers and nanotechnology that make them work) will presumably have new bugs. If they're still running on Windows, then you BET they'll need a million patches in the course of the user's life.
God, I want to write future disability fic now... I realise I've reiterated a lot of stuff people already said, but I am really interested in this and appreciate the rare opportunity to ramble about it.
Also, for disability in SF, look for the "Brain and Brawn Ship" series by Anne McCaffrey (and others): http://en.wikipedia.org/wiki/The_Ship_Who_Sang
I've only read "The Ship Who Searched".
(COMPLETE SPOILERS)
It's about a little girl whose parents are space archaeologists, and at one of their digs she comes into contact with something that causes a degenerative condition. Essentially, Tia's body progressively loses its functionality and she is given the opportunity to hook into a spaceship that will become both her life support system and her new body. 'Shellpersons' like Tia get matched up with an able-bodied person and go on various kinds of missions.
The thing I love about the book is how the disabled characters recognisably have their own culture (Shellpersons have their own type of music which works because of their sensory parameters, they tell 'Softperson' jokes, and there's references to how their experience impacts on their interactions with each other and with non-disabled people), and Tia fights to improves her rights as a worker and increase her autonomy re: her earnings, how she uses them, etc., instead of having to depend on an assigned able-bodied liaison. Essentially, the book makes the point that a scheme designed to benefit disabled people could also allow them to be exploited, but should not do so.
The ending might be a downfall, or might not. When Tia gets financial autonomy, she invests in various companies, including one which builds a prosthetic body she can transfer her consciousness into. This allows her to physically express her love for her Brawn pilot. So.... plus points for the fact that he falls for her as a disabled person, but minus points for the fact that the payoff at the end of the book is basically 'Yay, Tia has a facsimilie of her "normal" body back!'
I *think* that this was not the intention of the author, since we've already been shown how Shellperson consciousness, senses and experience are different from those of Softpersons rather than worse, and it's hard to imagine that Tia will give up zooming around the universe as a Brainship... but we all know about intent and how it's not actually the point. So it's very much a 'your mileage may vary' book for disabled readers...
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Also, Michael Mirriam is an up and coming spec-fic writer who almost always (always?) has a disabled person as the protagonist.
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I think the ableist part of things like this is more often than not the way in which it comes about. Abortion, for example. That would not be okay. But if they found a way to do it without harming those PWDs who already exist, would that be such a bad thing? And why?
ETA: Basically, I want my former level of functionality back. I am currently unable to work, study seriously, or embark upon the career I've wanted to follow since early childhood -- because of my disabling conditions, not in spite of them. Because I have them and there is no effective treatment at present for any of them. For the most part, I am barely functional. I struggle to take care of myself and at the age of 24, I passionately resent that. The way I feel about it is that I want my life back and if they come up with a way to do that for me and other people, what's so bad about it, if they do it right?
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I'm really worried here that I'm going to show out or say something hurtful, because I get totally where you're coming from. And I certainly wouldn't want anyone in reality to be denied a treatment that they want that could help them do what is best for them, nor do I think research into treatments that can help people is wrong or bad or anything. Goodness, no. I'm all about giving folks MORE and BETTER options. Nor do I think you're wrong in what you'd like to imagine or that you're even part of the problems I'm talking about when it comes to SF books/stories that bother me.
But at the same time? There are a lot of different things that fit under the umbrella of disability - and things that might become disabilities in the future and I can think of circumstances where a person might not want that treatment depending on their individual situation. For instance, a person with Asperger's might not WANT a treatment that would automatically rewire their neurology to make them neurotypical (or course, someone else with Asperger's might DEFINITELY want that) - and either way would be valid so long as it is that person's choice.
But I can also see why someone with a severe pain/fatigue disorder (or one that causes such a thing) would love to have a pill that could manage/get rid of their pain and give them energy. That is totally NOT wrong if that's what that person wants.
I think I may have expressed myself poorly in the above entry. Totally on me and my bad if I did. I'm not saying it's wrong to imagine better and better medicine. I HOPE we as a species continue to develop better medical/technological options. I really do.
But I don't think it's always about imagining better choices for folks when people write disability-free futures. I think it can be about erasure, or imagining that disability is the same to all people in all circumstances, both things that bother me deeply. I myself deal with mental health issues and I've got other friends who ID as PWD. We all go through different stuff, you know? What disability means to my friend with fibromyalgia and CF isn't what it means to me or to my friend with bipolar/anxiety disorder or my other friend with autistic spectrum disorder.
So I get a bit weirded out when people imagine frictionless treatments in which nothing ever goes wrong, it's accessible to all, and has no consequences/cost for the person undergoing them in ALL INSTANCES EVER in worlds that are decidedly not Utopian to begin with. Because I think isn't so much about a future hope as a present ablist attitude.
Is it wrong to imagine a future where there are better options and people have more available to them to make the choices they want to make? I don't think so. As long as it's framed in a way that it's their choice, and they're not being forced into it and that it's about them getting what they want in life, not being reformed/fixed/remade because they were so hideous and unbearably abnormal. I get a lot of that from what I read, a sense of, "Oh noes, you have [insert condition], that's so terrible and tragic! It would be impossible to carry on and let you be the hero unless you were fixed and made perfect again!"
So many books imagine that instant, consequenceless cures are the best option for EVERY SINGLE THING and that every person would automatically want that treatment or that treatment doesn't come with it's own risks and hazards and meaning for everyone, then I think that's a problem. I also think it's a problem when the imagined ideal is not a body and mind that simply functions in the way the person wants it to, but one that fits into the contemporary ideas of an a perfect, able, non-disabled body/mind.
Because it doesn't seem like the creation of so many SF futuristic worlds are about having better choices freely available or framing treatment in terms of function and individual suitability. They seem framed to be part of social conforming. It doesn't seem like these writers and these worlds would be satisfied with superior pain management or really awesome prosthetics or more access and ways to help folks have function that they want to have, even if it still means they aren't completely "normal". They want a world where body and mind can be medically/technologically remolded to fit a very strict paradigm of perfect/normal/healthy.
In some ways, I feel like such futures are a way of authors pointing to a perfect (and many times thin/white/male/straight/cisgender/gender binary as well) body and saying, "This is the only kind of body worthy of making it into the future. This is the only kind of body I want to imagine humankind having.'
I hope that make sense and I really, really hope I've checked my own privilege in this and if it's not, please, feel free to call me out on anything and everything.
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