Disability and the curing thereof
[semi-related to the current debate going on about h/c bingo, but I'd been thinking about this stuff before I'd heard of that challenge.]
I sort of expect to be hit with rotten fruit for the title alone. Um. At least read it through before you shoot?
So I've recently entered a newold fandom (X-men) where several of the main characters are disabled in some way. (There's an old post by minisinoo that discusses disability and X-men a bit more if you're interested; this isn't a fandom-specific post, so.) And this has made me come back into contact with ye olde trope of the Cured Disability.
Now, before I go on... we all realise that this trope is highly highly problematic and very often offensive and hurtful and marginalising, yes? We're all on the same page? Because I don't want to rehash this, it's been done and done better than I could and this is not that conversation. If this is really new to you, I might be able to dig up some links.
This conversation is about what happens if you do in fact Go There.
So. Something that struck me about the Cured Disability is that very often, it was framed as a sort of... reward. Or a gift. In some cases, something good character A was doing for character B, sometimes even without asking. And char B was of course OVERJOYED and had no problems with this at all, even when they'd had this disability for a very long time.
And that? Bothered me.
Possibly more than the actual curing itself.
Because, I'm realising, what I want to see is ambivalence, mixed feelings. If you're going to go there, if you're going to cure a character, I want to see them have to struggle with what that means for them afterwards. Because disability isn't objectively always bad, and lack of disability isn't objectively always good, especially when we're talking about a character who has been disabled for a long time suddenly losing that. (In fact, this entire post is about people who have been disabled for a while - I'm not familiar with acquiring a new disability but I suspect the same issues wouldn't apply.)
There are two things I really want to see a formerly-disabled character wrestle with: change and, related to that, identity.
Change: Someone who's been disabled for a long time, maybe their whole lives, is going to be accustomed to doing things the way that works for their disability. Whether that's a blind person with a guide dog who is essentially their life partner, a wheelchair user who knows all the accessible shops and disabled parking spots, someone with executive dysfunction who's spent years working out a routine that allows them to do what they need to do, the person will have adapted. Suddenly getting rid of the disability throws a wrench into all of that, because the thing they've adapted around just isn't there anymore. And even if in the long run they (they, not random CND person observing their life via fic) will find the nondisabled way of doing things better, in the short run it's probably going to be more difficult - because they're going from something they're familiar with, have spent years getting just right, to something completely new. Change is tough. I would like to see that acknowledged sometime.
Also, would be nice to see people struggling with their new abilities and the limitations and maybe even downsides thereof. The wheelchair user... well, probably needing to work up their leg muscles so they *can* walk or stand first of all, but needing to figure out how far they can walk, how long they can stand, what to do when they can't walk or stand any further, etc. The blind person figuring out sight. The person with executive dysfunction... okay, I'm not sure what it would do to me if you magically removed that, but I really think I'd be less functional at first rather than more because I'd need to refigure out how my brain works.
Identity: This is a big one in my mind. And it's not just identity as a disabled person, although I imagine for a lot of people - especially ones involved in disability rights or disability-based communities - that would be tough to come to terms with. (I took something like nine months to come to terms with identifying as disabled. You think the opposite direction is going to be that much easier?) Although there are examples where I think being cured might be extremely difficult for a person, such as for someone who is Deaf and part of Deaf culture. It's also being used to your disability and what it means for your life and for how people treat you, having that inform your worldview and your thoughts and your opinions, and having that be suddenly taken away.
Please note that none of this means that the reaction to curing has to be entirely negative, just that I really don't think it has to be entirely positive.
I think I'm not entirely making sense, so I'll finish up with a personal story so you can see where I'm coming from.
As I've said many times before on this journal! I have a speech disorder; I stutter. By this I mean persistent developmental stuttering, which is basically when you start stuttering during language acquisition (I was diagnosed at five or thereabouts, although on videos you can see my speech was strange even before that) and then never stop.
Stutters vary widely in terms of symptoms, both between different stutterers and for the same person at different times, so it's really hard to judge severity... but I'd say mine was sort of moderate-to-severe. I could never stutter covertly or otherwise pass as fluent for a longer period of time (bar brief phases that didn't last longer than a few months) and would have phases where communicating via pen and paper would probably have been faster. After I left school, it sort of settled into a pattern of moderately fluent most of the time with occasional extremely long blocks and scattered shorter ones - so I was communicating quite well but was definitely read as a stutterer (my blocks were pretty spectacular, and one of the words I could not pronounce without getting stuck for ages was my own name so there was no way to get past introductions without the other person knowing.)
I think this is the sort of disability that many people would consider objectively bad always - after all, isn't it better to speak fluently than block?
About two years ago, I did a speech therapy course. It worked reasonably well; I was almost totally fluent coming out of it and have been slowly backsliding ever since, although so slowly that it seems I'm the only person who notices.
And it has made me utterly miserable.
Part of that is that the speech therapy itself is pretty miserable-making - the course itself was awful, and using the therapy properly involves some degree of unnatural-sounding speech, mental effort and daily practice... all this for the rest of your life. Which would, incidentally, be why I *haven't* been using it properly (and have been backsliding, as well) - I haven't done the daily practice for over a year and use as little unnatural-sounding speech and mental effort as possible.
And I'm *still* miserable about it.
The thing is that I am used to being a person with a noticeable stutter (in fact, with MY stutter, who will be read as fluent for a bit and then have the Giant Monster Block of Doom come from nowhere). I am used to needing to allow for people's assumptions, politely ignoring their startled reactions, needing to work the fact that I stutter and people will notice into my plans (whether that's for going to buy bread at the bakery or my career goals.) And all of a sudden, people don't. I have been finding myself needing to tell people that actually, I have a speech disorder, and have them say something like "oh, I didn't notice!" or similarly polite and there is this dislocated feeling because I have never had to tell people before and no one would ever have said they didn't notice. When I find myself writing posts about the stutter online, I will introduce myself as having a moderate-to-severe stutter... when at the moment, I don't, not really (well, I do, it's still there under the therapy - you have no idea what a comfort this is - but it's not noticeable as such in day-to-day life.) And so I shouldn't be saying that - and then, at the same time, I realise when I talk to other PWS that my mindset is still entirely that of an overt stutterer who can't pass, that things like the issue of covertness and coming out and to-tell-or-not-to-tell that they might talk about elicit noncomprehension because this has never been an issue and suddenly it is.
Almost two years later, and I still can't deal with navigating the world as a semi-fluent person.
And there's also the disabled-identity angle, although I did therapy before starting to identify as disabled - as someone who identifies as disabled, who will talk your ear off about access and acceptance and how having a noticeable speech disorder should not be the issue it is, I feel as if the fact that I've done a speech therapy solely meant to reduce my symptoms, solely in order to make my disability more acceptable to the outside world, undermines all that. I feel like a hypocrite for talking about being proud of my disabled identity while working to hide it. While at the same time getting involved in disability rights has made me more aware that my fear of not being able to get the job I want - which involves quite a bit of speaking to an audience - with a noticeable speech disorder is damn well justified, and that's the reason I did the therapy in the first place.
And there are extra issues, because speech therapy isn't the same thing as a cure. The backsliding means that while I wouldn't exactly call myself fluent anymore I'm not noticeably stuttering either - my speech is characterised by pauses in strange places mostly, although tiny blocks are starting to creep back in. This means that now I have to deal with atypical speech of a type I'm not used to and people's reactions to that - for instance, someone joking that I forgot my name after I paused before it for a long time, which really threw me because no one had ever joked about my stuttering it (because stuttering, at least the way I do/did it, is read as a speech disorder and this isn't).
Which, to get back to the original topic of the post, is something I'd also be interested in people doing - changing the disability instead of curing it entirely and having the disabled character having to deal with its new manifestation.
In fact, let me get to the actual point of this post:
When I read a story in which a character's stutter is cured, I usually end up so angry I want to throw it against the wall. However, if someone wrote a story where a character's stutter is cured, and instead of having them weep tears of copious joy or whatever they went through something like what I wrote up there?
I would read that story in a heartbeat.
ETA: Rereading, I feel obliged to clarify that my speech therapy experience isn't all negative, either. It can be nice to go out and not have to worry about "if I order this I will stutter badly and people will stare and it will be embarrassing and awkward and I could order that instead and be fluent but I don't really want that and dammit I just want a fucking cup of tea!" and my job chances going up is nice. It's mixed, is the thing. Mostly bad, not entirely.
I sort of expect to be hit with rotten fruit for the title alone. Um. At least read it through before you shoot?
So I've recently entered a newold fandom (X-men) where several of the main characters are disabled in some way. (There's an old post by minisinoo that discusses disability and X-men a bit more if you're interested; this isn't a fandom-specific post, so.) And this has made me come back into contact with ye olde trope of the Cured Disability.
Now, before I go on... we all realise that this trope is highly highly problematic and very often offensive and hurtful and marginalising, yes? We're all on the same page? Because I don't want to rehash this, it's been done and done better than I could and this is not that conversation. If this is really new to you, I might be able to dig up some links.
This conversation is about what happens if you do in fact Go There.
So. Something that struck me about the Cured Disability is that very often, it was framed as a sort of... reward. Or a gift. In some cases, something good character A was doing for character B, sometimes even without asking. And char B was of course OVERJOYED and had no problems with this at all, even when they'd had this disability for a very long time.
And that? Bothered me.
Possibly more than the actual curing itself.
Because, I'm realising, what I want to see is ambivalence, mixed feelings. If you're going to go there, if you're going to cure a character, I want to see them have to struggle with what that means for them afterwards. Because disability isn't objectively always bad, and lack of disability isn't objectively always good, especially when we're talking about a character who has been disabled for a long time suddenly losing that. (In fact, this entire post is about people who have been disabled for a while - I'm not familiar with acquiring a new disability but I suspect the same issues wouldn't apply.)
There are two things I really want to see a formerly-disabled character wrestle with: change and, related to that, identity.
Change: Someone who's been disabled for a long time, maybe their whole lives, is going to be accustomed to doing things the way that works for their disability. Whether that's a blind person with a guide dog who is essentially their life partner, a wheelchair user who knows all the accessible shops and disabled parking spots, someone with executive dysfunction who's spent years working out a routine that allows them to do what they need to do, the person will have adapted. Suddenly getting rid of the disability throws a wrench into all of that, because the thing they've adapted around just isn't there anymore. And even if in the long run they (they, not random CND person observing their life via fic) will find the nondisabled way of doing things better, in the short run it's probably going to be more difficult - because they're going from something they're familiar with, have spent years getting just right, to something completely new. Change is tough. I would like to see that acknowledged sometime.
Also, would be nice to see people struggling with their new abilities and the limitations and maybe even downsides thereof. The wheelchair user... well, probably needing to work up their leg muscles so they *can* walk or stand first of all, but needing to figure out how far they can walk, how long they can stand, what to do when they can't walk or stand any further, etc. The blind person figuring out sight. The person with executive dysfunction... okay, I'm not sure what it would do to me if you magically removed that, but I really think I'd be less functional at first rather than more because I'd need to refigure out how my brain works.
Identity: This is a big one in my mind. And it's not just identity as a disabled person, although I imagine for a lot of people - especially ones involved in disability rights or disability-based communities - that would be tough to come to terms with. (I took something like nine months to come to terms with identifying as disabled. You think the opposite direction is going to be that much easier?) Although there are examples where I think being cured might be extremely difficult for a person, such as for someone who is Deaf and part of Deaf culture. It's also being used to your disability and what it means for your life and for how people treat you, having that inform your worldview and your thoughts and your opinions, and having that be suddenly taken away.
Please note that none of this means that the reaction to curing has to be entirely negative, just that I really don't think it has to be entirely positive.
I think I'm not entirely making sense, so I'll finish up with a personal story so you can see where I'm coming from.
As I've said many times before on this journal! I have a speech disorder; I stutter. By this I mean persistent developmental stuttering, which is basically when you start stuttering during language acquisition (I was diagnosed at five or thereabouts, although on videos you can see my speech was strange even before that) and then never stop.
Stutters vary widely in terms of symptoms, both between different stutterers and for the same person at different times, so it's really hard to judge severity... but I'd say mine was sort of moderate-to-severe. I could never stutter covertly or otherwise pass as fluent for a longer period of time (bar brief phases that didn't last longer than a few months) and would have phases where communicating via pen and paper would probably have been faster. After I left school, it sort of settled into a pattern of moderately fluent most of the time with occasional extremely long blocks and scattered shorter ones - so I was communicating quite well but was definitely read as a stutterer (my blocks were pretty spectacular, and one of the words I could not pronounce without getting stuck for ages was my own name so there was no way to get past introductions without the other person knowing.)
I think this is the sort of disability that many people would consider objectively bad always - after all, isn't it better to speak fluently than block?
About two years ago, I did a speech therapy course. It worked reasonably well; I was almost totally fluent coming out of it and have been slowly backsliding ever since, although so slowly that it seems I'm the only person who notices.
And it has made me utterly miserable.
Part of that is that the speech therapy itself is pretty miserable-making - the course itself was awful, and using the therapy properly involves some degree of unnatural-sounding speech, mental effort and daily practice... all this for the rest of your life. Which would, incidentally, be why I *haven't* been using it properly (and have been backsliding, as well) - I haven't done the daily practice for over a year and use as little unnatural-sounding speech and mental effort as possible.
And I'm *still* miserable about it.
The thing is that I am used to being a person with a noticeable stutter (in fact, with MY stutter, who will be read as fluent for a bit and then have the Giant Monster Block of Doom come from nowhere). I am used to needing to allow for people's assumptions, politely ignoring their startled reactions, needing to work the fact that I stutter and people will notice into my plans (whether that's for going to buy bread at the bakery or my career goals.) And all of a sudden, people don't. I have been finding myself needing to tell people that actually, I have a speech disorder, and have them say something like "oh, I didn't notice!" or similarly polite and there is this dislocated feeling because I have never had to tell people before and no one would ever have said they didn't notice. When I find myself writing posts about the stutter online, I will introduce myself as having a moderate-to-severe stutter... when at the moment, I don't, not really (well, I do, it's still there under the therapy - you have no idea what a comfort this is - but it's not noticeable as such in day-to-day life.) And so I shouldn't be saying that - and then, at the same time, I realise when I talk to other PWS that my mindset is still entirely that of an overt stutterer who can't pass, that things like the issue of covertness and coming out and to-tell-or-not-to-tell that they might talk about elicit noncomprehension because this has never been an issue and suddenly it is.
Almost two years later, and I still can't deal with navigating the world as a semi-fluent person.
And there's also the disabled-identity angle, although I did therapy before starting to identify as disabled - as someone who identifies as disabled, who will talk your ear off about access and acceptance and how having a noticeable speech disorder should not be the issue it is, I feel as if the fact that I've done a speech therapy solely meant to reduce my symptoms, solely in order to make my disability more acceptable to the outside world, undermines all that. I feel like a hypocrite for talking about being proud of my disabled identity while working to hide it. While at the same time getting involved in disability rights has made me more aware that my fear of not being able to get the job I want - which involves quite a bit of speaking to an audience - with a noticeable speech disorder is damn well justified, and that's the reason I did the therapy in the first place.
And there are extra issues, because speech therapy isn't the same thing as a cure. The backsliding means that while I wouldn't exactly call myself fluent anymore I'm not noticeably stuttering either - my speech is characterised by pauses in strange places mostly, although tiny blocks are starting to creep back in. This means that now I have to deal with atypical speech of a type I'm not used to and people's reactions to that - for instance, someone joking that I forgot my name after I paused before it for a long time, which really threw me because no one had ever joked about my stuttering it (because stuttering, at least the way I do/did it, is read as a speech disorder and this isn't).
Which, to get back to the original topic of the post, is something I'd also be interested in people doing - changing the disability instead of curing it entirely and having the disabled character having to deal with its new manifestation.
In fact, let me get to the actual point of this post:
When I read a story in which a character's stutter is cured, I usually end up so angry I want to throw it against the wall. However, if someone wrote a story where a character's stutter is cured, and instead of having them weep tears of copious joy or whatever they went through something like what I wrote up there?
I would read that story in a heartbeat.
ETA: Rereading, I feel obliged to clarify that my speech therapy experience isn't all negative, either. It can be nice to go out and not have to worry about "if I order this I will stutter badly and people will stare and it will be embarrassing and awkward and I could order that instead and be fluent but I don't really want that and dammit I just want a fucking cup of tea!" and my job chances going up is nice. It's mixed, is the thing. Mostly bad, not entirely.