Normally I'd agree 100% with anything Ellen Oh says on needing diverse books, and I still feel we as writers and readers, and I personally as a diverse author, owe her a tremendous debt of gratitude for what she has done with We Need Diverse Books, but her Dear White Writers post left me feeling, well erased. You see, I'm both a diverse writer, and a white writer, the two aren't mutually exclusive.
Before I go any further, I need you to go read what Ellen wrote if you haven't already: Dear White Writers
And her follow-up: here (in which she says she's taking a break from social media, so I have the unfair advantage of talking without the likelihood of reply)
That second post recommend's Shannon Hale's tweets on the topic, which is Shannon being a wise ally as usual, so read them too.
There's also Upstart Crow Literary's White Writers: Don’t Write Diverse Books. Instead, Read Them post, which I think is important because it shows agents are seeing this happening in their inboxes and that it is a very real phenomenon (and also for the way they phrased that title).
Caught up? Good.
What I'm not linking to is the reaction to Ellen's post. I missed that, having a couple of days off social media, and I'm glad I did, I can well imagine how ugly it will have been. And what ended up in Ellen's in-box is likely to have been far worse, the well publicised examples from Gamergate and its ilk are all too virulent in their hate of those of us who say the status quo cannot stand. A friend faced that over Christmas and I bitterly regret not being on line to be able to offer her support and challenge the aggressors. I'm taking issue with the way Ellen phrased her point, but I'll stand by her to the last against those who deny she has one.
I absolutely understand that Ellen was addressing white writers who are deciding to write protagonists who are People of Colour because of the prominence of WNDB, and in fact I agree with her, We Need Diverse Books is not some fad to be jumped on by non-diverse authors for their personal gain. The question that worries me is: did most of her audience understand that distinction?
Since We Need Diverse Books gathered momentum, I've been worried by the number of people, primarily outside the core WNDB movement, who have phrased diversity as purely an ethnicity issue, and that goes particularly for the industry and popular press. If people only see diversity being addressed as an issue of ethnicity, it will drive them to see it as only a question of ethnicity. Amd the result may be the further marginalization of already marginalized voices.
But diversity is far more than ethnicity alone, and We Need Diverse Books addresses more than simply the exclusion of Authors of Colour and Protagonists of Colour. Similarly missing from the bookshelves and the lists of new publishing deals are the QUILTBAG authors and protagonists, the disabled authors and protagonists (that would be me, and my characters), the non-Christian and atheist voices, writers who didn't grow up in the chattering classes, writers with atypical family backgrounds, and so on. I can't be exhaustive, the list of unrepresented minorities is simply too diverse. Yet when people phrase WNDB as solely an ethnicity issue, those of us whose diversity isn't an ethnicity issue can't help feeling a little erased.
One thing I've loved about WNDB is it has never shied from saying it was about the intersection of diversities as well as individual diversities, because so many of my friends live at the intersection of multiple diversities. Intersectionality may not cover the privilege of being white (and even as a disabled, white male, middle-class author I am hugely privileged), but it should remind us of the existence of those of us with non-ethnicity based diversities, and that some of us will inevitably be white.
Now Ellen's point addressed white authors leaping onto the back of WNDB for personal gain. As I said, I agree with it. As a white author I lack the direct personal experience to write a Person of Colour as a protagonist, at least without very considerable input from people who have the lived experience of being People of Colour. And at a time when we are attempting to create the space to establish the careers of Authors of Colour, I, and other white authors, should step back in order to give those careers space to bloom. As Ellen Oh says: "Aren’t there enough stories from the white perspective already? Must you tell our stories through your lens too?" But her point has wider applicability. Whatever your ethnicity, unless you are also disabled then you haven't lived as a disabled person, someone society rejects as broken.(or as a gay or trans person, a non-Christian, or whatever). Imagine what it feels like to have you existence erased by an entire genre that, when it deigns to notice you, insists that you need to be fixed (SF/F I'm looking at you). I've faced the classic forrms of disability discrimination first hand: abuse, assault, accusations of benefit fraud, dismissal as a 'bitter cripple' for daring to speak out, demonization in the press, destruction of career, perceived as asexual, and so on. I've lived not being able to get into every other shop on the High Street, of being required to give 24 hours notice if I want to take a train or a plane, and if you haven't faced that, how much insight will you bring to writing a disabled character?
Ellen phrased her point as about ethnicity, which is valid, but also as about diversity: "Diversity is not a new hot trend for you all to jump on and write about" If it had been solely phrased as ethnicity, despite the wider applicability I referred to above, then I might have sighed at being ignored again, and moved on, but it's neither clearly solely about ethnicity, nor clearly addressing the wider issues of diverisity as a whole, and the danger, to my eyes, is that the diversity=ethnicity and white=non-diverse messages are further reinforced. I'm absolutely certain that isn't Ellen's intent, but I do believe a lot of people will read it that way - just look at how Upstart Crow titled their piece.
One thing we don't want from We Need Diverse Books is for any diversities to become even more marginalized, but that requires us to recognise that diversity is not ethnicity, and make that point to our audience. If you're talking only about ethnicity, then absolutely, talk about People of Colour and White authors and characters (and make it clear your point relates to ethnicity alone), but if you're addressing general diversity issues, please, don't use 'People of Colour' and 'White', use 'Diverse', or 'Non-Diverse', that way the rest of us won't be left feeling further excluded.
Monday, 22 February 2016
Monday, 15 February 2016
SF/F and the Politics of Disability
There's been some development in the SF Signal/Special Needs in Strange Worlds situation since I first blogged about the Amy Sterling-Casil fiasco. (An image capture of her 'We Are All Disabled' column is still available here, with a cached version of the original here, at least for now).
Firstly Sterling-Casil apologised - 200 words of apology and 2000 words of you read it wrong and you're all being nasty to me. Dear Individuals on the ASD Spectrum and Others: I am Sorry.
It's aggressively defensive, attacking those who criticised her, but she does mention PTSD, and it may be some kind of hypervigilance defence, and even if it isn't I don't think she's in any mind to understand where and why she was wrong, so I'm not going to reply to her there, and I'm definitely not going to engage with an argument that makes it about her rather than about disability. But that doesn't mean I can't talk here about where she was wrong and how she got it so wrong.
Secondly she popped up in Jim Hines' blog responding to her column, with more of the same. I did reply to her points there, because she wasn't making it about herself, and I realised in doing so what her fundamental problem in writing about disability was, but I can't find those posts of hers now, so I presume they were pulled, and as mine were a reply they're also now lost - which is a pain as they were what I wanted to build this blog around, but I know what I said well enough to recreate it.
The third development is the one I was worried might happen, the SF Signal 'Special Needs in Strange Worlds' column is being pulled. I might loathe the title, but I think the actual column was important. It's Sarah Chorn, the person running it, who is doing the pulling, and she does seem to have some new ideas she wants to develop, which she outlines here, but I think creating a separate website, amd one where disability in SFF literature is not the focus, loses one of the primary advantages of the SF Signal column - that it was talking about Disability in SFF within the mainstream of SFF.
And finally I ran across this storify, which collects a bunch of tweets by disabled SFF activists, most of which I didn't see at the time (I've now added those I wasn't already following to my twitter feed - that's a hint, people!). It misses a bunch more, Elsa Henry (@snarkbat) and Foz Meadows (@fozmeadows) notably, but it gives a good impression of how absolutely affronted and horrified disabled people were by what Sterling-Casil said.
So, I said I figured out what Sterling-Casil's problem is. It's simple, she's profoundly ignorant about disability.
I want to make it clear I'm using ignorant in the lacks knowledge sense rather than the more common pejorative use, but it's the only word I can think of that adequately quantifies her lack of insight. It's like any time a well known non-genre author decides to write SF/F, and all the mainstream critics hail them as bringing new insight to the genre, whereas all the genre critics are thinking How can they not know this stuff is not just old hat, but cliched old hat? and pointing you at two dozen books that did it previously, and did it better. And just so I'm being clear and frank on this, I think the same ignorance of disability applies to the overwhelming majority of the non-disabled population.
Disability is much more than non-disabled people see, it's not about wheelchairs and being, ugh, pitable. Disability is a living community of diverse people with diverse needs and opinions, but who share a core issue, the failure of non-disabled society to acknowledge their needs and aspirations as equal members of society. Disability exists within a context. But non-disabled people don't just not see that context, when disabled people drag it in front of them and force them to see it they almost universally deny its validity and replace it with their own conception of disability and what is an acceptable opinion for a disabled person to hold. There's probably not one of us who hasn't been written off with 'they've just got a chip on their shoulder because they're bitter about being disabled,' I certainly have. It's the modern version of being the Uppity N-word - in the right, not prepared to be dismissed, and rejected for daring to be more than society condemns us to be.
Disability exists within a context of history and politics, and you need to be aware of that context if you want to write with any depth on the subject, even in SF/F. This is particularly important right now, because we are seeing a conservative backlash against disability rights across the English-speaking world (anyone from outside Anglophonia feel free to add your thoughts in the coomments, I'm genuinely curious if it's purely an Anglo phenomenon). The backlash can be summed up in one of the most corrosive terms about disability that exists today: 'genuinely disabled', because 'genuinely disabled' implies the validity of 'falsely disabled'. When the UK public were surveyed, they said, on average, that 27% of disabled people were faking their disabilities in order to claim disability benefits, and right wing national newspapers have carried headlines saying '75% are faking'. In actual fact the fraud rate for disability benefits is 0.7% and lower than for any of the benefits non-disabled people can claim (and that 0.7% is near universally people who are disabled but haven't bothered to notify a change of circumstances). Those attitudes have created a sweeping wave of hostility towards disabled people in the street. I've lost count of the number of times I've had 'scrounger' yelled at me by complete strangers because I happen to be walking while disabled. Nor are physical assaults remotely rare (been there, done that, don't attack the guy who saw you coming and is walking with the aid of two four foot clubs). I think we've lost at least twenty years of progress, possibly thirty or more. And I see reports of disabled people experiencing exactly the same thing in Australia and the US.
So when Amy Sterling-Casil says 'We Are All Disabled', she's tapping into that 'genuinely disabled' terminology, that conservative backlash, and undermining the reality of our disability, our very existence as a discriminated against minority. And she's doing it without bothering to do even the most basic research about her topic. Disability Studies is an academic discipline, I've enough disabled friends who have qualifications in the subject I've actually lost count, but a decade and a half of discussing it with them has given me a solid (if amateur) grounding in the sociology and politics of disability, Sterling-Casil appears not to know it even exists as she pontificates on what we should all be called.
When she talks about the young man with autism not being able to empathise, she is tapping into the dominant mainstream model of disability, the Personal Tragedy Model. This construct portrays us as incapable, impotent, objects of pity. It objectifies us in order to allow the mainstream population to feel good about themselves for pitying us, for, frankly, being better than us. Growing out of this thinking we have Inspiration Porn, the active use of disabled people to make non-disabled people feel better about themselves. You'll all have seen them, the posters, usually with a paralympian or multiple amputee child on running blades saying 'Your excuse is invalid' or 'The only disability in life is a bad attitude' - there's that erasure again, and that objectification of us feeds on itself to create the next model of disability, the Supercrip. (Incidentally, running blades, about the cost of your car).
The Supercrip is a particularly vicious objectifiation because it only permits three roles for disabled people. The first role corrosively champions us as inspirations just for getting out of bed in the morning, or, especially, holding down a job, undermining any aspirations we might have (Consider Heinlein's little aside in the near-deified Starship Troopers that a disabled person would be found a job counting the hairs on a caterpillar or some such if they really wanted the vote. I can't help thinking that as an actual weapons system engineer I could be slightly more useful in the war against the Bugs). The second role is the actual Supercrip, the Paralympian. During the London Paralympics the Daily Telegraph, a hugely respected conservative broadsheet, actually ran a column saying that the paralympians proved that all disabled people could work if they really wanted to (and the author was a former editor of the Catholic Herald with familial experience of disability!) A similar argument is trotted out in relation to Stephen Hawking, even though Hawking himself is adamant he should not be used as a model because of the extraordinarily atypical level of support he receives. Sterling-Casil engaged in a version of this, the magical crip, when she claimed wheelchair users have 'special perception'. Not so as I've noticed, we don't.
And the third role? It's the 'bitter cripple' with 'a chip on their shoulder' again. It's difficult to beat the late Stella Young's TED talk "I'm Not Here For Your Inspiration" for an entertaining explanation of the problem and why you should do better (though even the supposedly high-IQ TED audience proved non-disableds just don't listen to disabled people; when Stella died unexpectedly, about a year after the talk, they launched a campaign to honour her memory that was just as inappropriate as Sterling-Casil's blog).
These could be worse, they are at least better than the Victorian concept of locking up disabled people in asylums, away from right-thinking eyes. Only that view still exists, the xenophobic and homophobic UK Independence Party (UKIP - which Donald Trump seems to be modelling himself on) had a call for people with learning disabilities to be segregated into camps as recently as their 2010 manifesto, Given between 200,000 and 300,000 disabled Germans, Austrians and Poles, many children, were killed by the Nazis' Aktion T4 programme, the prototype for the wider Holocaust, you can imagine how terriftying this was for disabled people. At least SF/F would never suggest that. Oh, hang on, yes it does. In the beloved The Ship Who Sang, often cited as a positive example of disability SFF, not only is Helva locked away in the shell and then in the wall of her ship, doubly consigned to the attic just in case anyone might see her, but all the disabled kids who don't get to be Shell-Children are killed - just think of it as eugenics in action. And of course the one story Amy Sterling-Casil brings up to support her argument and show her 'understanding' of disability isn't Ship Who Sang, it's her own borrowing of Mcaffrey's conceit to make it even worse, while still not seeing the problem. McCaffrey had an excuse, she was, barely, writing before the disability liberation movement broke us out of the hospitals and asylums and 'homes', but for Amy Sterling-Casil, writing in 2016, there is no excuse other than the arrogance to think she didn't need to do the research.
Next we move on to the Medical Model of Disability, aka "You are broken and as a physician I need to descend from my godlike ivory tower to fix you". As you might have guessed from the name, this one is particularly common among the medical community, but also, unfortunately, among SF/F authors, as seen in the predominance of cure narratives on the rare occasions disabled people actually do feature in SF/F (it's also a particular hangup of the Christian churches - I had to stop someone 'prayng for me' in the street just last year - actually he was using me as an object of pity to make him feel good about himself). Sterling-Casil herself indulged in the Medical Model when discussing whether autism could be 'cured'. What she missed, because she didn't bother with even basic research, is that the autism, and wider neurodiverse, community is adamant that they don't need a cure, as are a large percentage of disabled people in general. Of course Sterling-Casil isn't alone, the huge autism charity Autism Speaks is absolutely loathed within the neurodiverse community for its portrayal of autism as a killer of family life that needs to be exterminated. Watch the #actuallyautistic hashtag for what autistic people really think. The disability community is divided on cures, some groups, notably those with Spinally Cord Injuries, are desperate for a cure, as, understandably, are those with disabilities that will be ultimately fatal, such as ALS/MND. But many other disabled people are perfectly happy as we are. In general there is a dichotomy between born-disabled and acquired-disabled, but it is by no means unanimous. A particularly nasty combination of Medical Model and scrounger rhetoric sees disabled people told they must seek a cure whether they want one of not, because anything else would be 'scrounging off the taxpayer'. It's bad enough when this is from the people around us, but there are strong indications the current UK government would like to make it government policy (fortunately the medical ethics requirement for informed consent gets in the way, for now).
You may have noticed I'm not using Person With a Disability (aka PWD, aka Person First) language, the model that says our disability is not all of us, that's because, despite what you may have been told by non-disabled advocates of PWD, the disability community isn't universally in favour of it. There are variations within the different groups of disabled people. The neurodiverse community and the Deaf community both reject PWD, because they hold that being neurodiverse or Deaf are not problems to be fixed, but cultural identifiers (and if you're neurodiverse it is difficult to separate yourself from something that is absolutely fundamental to the person you are!). Yet some supposed allies will deny that this is our decision to take, I saw someone who identified herself as a specialist in disability education tell an autistic person that their preferred identity as autistic was 'incorrect' within the last month. And then there are regional differences, the UK largely rejects PWD because we prefer the Social Model, of which more in a moment. And what do we see Amy Sterling-Casil doing in her blog? Arguing, specifically in relation to autistic people, that we should use her personal variant of PWD. God forbid she might have asked an autistic person what they thought first!
Almost finally, the Social Model of Disability, this is the model I favour, this is the model that looks around and says Actually, we aren't the problem, you are. The Social Model redefines Disability as 'the discrimination we face as the result of the failure of society to remove the barriers we face as a result of our impairments.' It separates our experience of being impaired, from the disability caused by the barriers we face. So the problem isn't that I can't get into places because my joints don't work and I need to use a wheelchair, it's because no one has bothered to make them wheelchair accessible (never mind it's 25 years since ADA became law, 21 years since DDA in the UK - that's a generation, people, and I still can't get into every other shop on the high street!). Similarly the problem isn't me being unreliable because I'm too fatigued or in too much pain or too stressed to make it to a meeting, it's that people haven't changed the way they think about disability to not assign a negative to things beyond my control, and so on. For every barrier, there is one interpretation that blames our disability, and another that asks society why the barrier is there in the first place. The Social Model is a hugely positive model for change.
And then, finally, there's the Biopsychosocial Model. This started up as a pretty positive academic model of disability that noted that psychological effects would play into recovery (though the whole recovery thing is problematic, as noted above). Then that conservative backlash got hold of it in the form of Unum Provident, a major US insurer. Unum took the biopsychosocial model and combined it with the work of right-wing US sociologist Talcott Parsons, and his concept of 'the sick role' (i.e. disability) as 'socially deviant', and soon Unum was denying thousands upon thousands of disability insurance claims on the grounds that people 'weren't trying hard enough' to recover, never mind many of the claims were for incurable disabilities. They might have gotten away with it if they hadn't been quite so blatant with their 'disability denial mills', but they ran headlong into a massive class action suit honcho'ed by the New York State Attorney General, who branded them 'an outlaw company'. Unfortunately not before Unum had convinced the UK to make the biopsychosocial model of disability the officially approved government model. Which led to the tragedy of the Unum-inspired, Atos-operated 'Work Capability Assessment', with at least 80 disabled people dead through suicide to date (a recent piece of research suggests the true figure may be in the high hundreds), and which single-handedly almost brought the UK court system to its knees as disabled people in their hundreds of thousands successfully appealed the rulings that denied them disability benefits, while the conservative press bragged that '75% are faking'.
And that's the social attitude towards disability that Amy Sterling-Casil blithely tried to drive a horse and cart through, because actually going out and doing the research to realise that 'We Are All Disabled' would be hugely offensive was clearly unnecessary, because everyone knows about disability, don't they?!
Disability, it's more complicated than you thought. But the great thing about ignorance is you get to go out and fix it yourself! I really do want more people to write about disability in SF/F, I want to see people like me in the stories I read, but please, do the research first, just like you would for any other oppressed minority you desperately want to get right.
To close a (probably non-exhaustive) list of blogs and so on about this that haven't been mentioned elsewhere in the text:
SF Signal: An Apology
Foz Meadows: Empathy is Not a Disability
Shaun Duke: Why I Try Not to Talk About Things I Know Nothing About
Tili Sokolov: Human Flaws and Disability: Not the Same Thing
A C Buchanan: On Empathy and Building Spaceships
Jessica Strider: Sarah, Please Keep Doing Special Needs in Strange Worlds
Annalee: The Geek's Guide to Accessibility
Firstly Sterling-Casil apologised - 200 words of apology and 2000 words of you read it wrong and you're all being nasty to me. Dear Individuals on the ASD Spectrum and Others: I am Sorry.
It's aggressively defensive, attacking those who criticised her, but she does mention PTSD, and it may be some kind of hypervigilance defence, and even if it isn't I don't think she's in any mind to understand where and why she was wrong, so I'm not going to reply to her there, and I'm definitely not going to engage with an argument that makes it about her rather than about disability. But that doesn't mean I can't talk here about where she was wrong and how she got it so wrong.
Secondly she popped up in Jim Hines' blog responding to her column, with more of the same. I did reply to her points there, because she wasn't making it about herself, and I realised in doing so what her fundamental problem in writing about disability was, but I can't find those posts of hers now, so I presume they were pulled, and as mine were a reply they're also now lost - which is a pain as they were what I wanted to build this blog around, but I know what I said well enough to recreate it.
The third development is the one I was worried might happen, the SF Signal 'Special Needs in Strange Worlds' column is being pulled. I might loathe the title, but I think the actual column was important. It's Sarah Chorn, the person running it, who is doing the pulling, and she does seem to have some new ideas she wants to develop, which she outlines here, but I think creating a separate website, amd one where disability in SFF literature is not the focus, loses one of the primary advantages of the SF Signal column - that it was talking about Disability in SFF within the mainstream of SFF.
And finally I ran across this storify, which collects a bunch of tweets by disabled SFF activists, most of which I didn't see at the time (I've now added those I wasn't already following to my twitter feed - that's a hint, people!). It misses a bunch more, Elsa Henry (@snarkbat) and Foz Meadows (@fozmeadows) notably, but it gives a good impression of how absolutely affronted and horrified disabled people were by what Sterling-Casil said.
So, I said I figured out what Sterling-Casil's problem is. It's simple, she's profoundly ignorant about disability.
I want to make it clear I'm using ignorant in the lacks knowledge sense rather than the more common pejorative use, but it's the only word I can think of that adequately quantifies her lack of insight. It's like any time a well known non-genre author decides to write SF/F, and all the mainstream critics hail them as bringing new insight to the genre, whereas all the genre critics are thinking How can they not know this stuff is not just old hat, but cliched old hat? and pointing you at two dozen books that did it previously, and did it better. And just so I'm being clear and frank on this, I think the same ignorance of disability applies to the overwhelming majority of the non-disabled population.
Disability is much more than non-disabled people see, it's not about wheelchairs and being, ugh, pitable. Disability is a living community of diverse people with diverse needs and opinions, but who share a core issue, the failure of non-disabled society to acknowledge their needs and aspirations as equal members of society. Disability exists within a context. But non-disabled people don't just not see that context, when disabled people drag it in front of them and force them to see it they almost universally deny its validity and replace it with their own conception of disability and what is an acceptable opinion for a disabled person to hold. There's probably not one of us who hasn't been written off with 'they've just got a chip on their shoulder because they're bitter about being disabled,' I certainly have. It's the modern version of being the Uppity N-word - in the right, not prepared to be dismissed, and rejected for daring to be more than society condemns us to be.
Disability exists within a context of history and politics, and you need to be aware of that context if you want to write with any depth on the subject, even in SF/F. This is particularly important right now, because we are seeing a conservative backlash against disability rights across the English-speaking world (anyone from outside Anglophonia feel free to add your thoughts in the coomments, I'm genuinely curious if it's purely an Anglo phenomenon). The backlash can be summed up in one of the most corrosive terms about disability that exists today: 'genuinely disabled', because 'genuinely disabled' implies the validity of 'falsely disabled'. When the UK public were surveyed, they said, on average, that 27% of disabled people were faking their disabilities in order to claim disability benefits, and right wing national newspapers have carried headlines saying '75% are faking'. In actual fact the fraud rate for disability benefits is 0.7% and lower than for any of the benefits non-disabled people can claim (and that 0.7% is near universally people who are disabled but haven't bothered to notify a change of circumstances). Those attitudes have created a sweeping wave of hostility towards disabled people in the street. I've lost count of the number of times I've had 'scrounger' yelled at me by complete strangers because I happen to be walking while disabled. Nor are physical assaults remotely rare (been there, done that, don't attack the guy who saw you coming and is walking with the aid of two four foot clubs). I think we've lost at least twenty years of progress, possibly thirty or more. And I see reports of disabled people experiencing exactly the same thing in Australia and the US.
So when Amy Sterling-Casil says 'We Are All Disabled', she's tapping into that 'genuinely disabled' terminology, that conservative backlash, and undermining the reality of our disability, our very existence as a discriminated against minority. And she's doing it without bothering to do even the most basic research about her topic. Disability Studies is an academic discipline, I've enough disabled friends who have qualifications in the subject I've actually lost count, but a decade and a half of discussing it with them has given me a solid (if amateur) grounding in the sociology and politics of disability, Sterling-Casil appears not to know it even exists as she pontificates on what we should all be called.
When she talks about the young man with autism not being able to empathise, she is tapping into the dominant mainstream model of disability, the Personal Tragedy Model. This construct portrays us as incapable, impotent, objects of pity. It objectifies us in order to allow the mainstream population to feel good about themselves for pitying us, for, frankly, being better than us. Growing out of this thinking we have Inspiration Porn, the active use of disabled people to make non-disabled people feel better about themselves. You'll all have seen them, the posters, usually with a paralympian or multiple amputee child on running blades saying 'Your excuse is invalid' or 'The only disability in life is a bad attitude' - there's that erasure again, and that objectification of us feeds on itself to create the next model of disability, the Supercrip. (Incidentally, running blades, about the cost of your car).
The Supercrip is a particularly vicious objectifiation because it only permits three roles for disabled people. The first role corrosively champions us as inspirations just for getting out of bed in the morning, or, especially, holding down a job, undermining any aspirations we might have (Consider Heinlein's little aside in the near-deified Starship Troopers that a disabled person would be found a job counting the hairs on a caterpillar or some such if they really wanted the vote. I can't help thinking that as an actual weapons system engineer I could be slightly more useful in the war against the Bugs). The second role is the actual Supercrip, the Paralympian. During the London Paralympics the Daily Telegraph, a hugely respected conservative broadsheet, actually ran a column saying that the paralympians proved that all disabled people could work if they really wanted to (and the author was a former editor of the Catholic Herald with familial experience of disability!) A similar argument is trotted out in relation to Stephen Hawking, even though Hawking himself is adamant he should not be used as a model because of the extraordinarily atypical level of support he receives. Sterling-Casil engaged in a version of this, the magical crip, when she claimed wheelchair users have 'special perception'. Not so as I've noticed, we don't.
And the third role? It's the 'bitter cripple' with 'a chip on their shoulder' again. It's difficult to beat the late Stella Young's TED talk "I'm Not Here For Your Inspiration" for an entertaining explanation of the problem and why you should do better (though even the supposedly high-IQ TED audience proved non-disableds just don't listen to disabled people; when Stella died unexpectedly, about a year after the talk, they launched a campaign to honour her memory that was just as inappropriate as Sterling-Casil's blog).
These could be worse, they are at least better than the Victorian concept of locking up disabled people in asylums, away from right-thinking eyes. Only that view still exists, the xenophobic and homophobic UK Independence Party (UKIP - which Donald Trump seems to be modelling himself on) had a call for people with learning disabilities to be segregated into camps as recently as their 2010 manifesto, Given between 200,000 and 300,000 disabled Germans, Austrians and Poles, many children, were killed by the Nazis' Aktion T4 programme, the prototype for the wider Holocaust, you can imagine how terriftying this was for disabled people. At least SF/F would never suggest that. Oh, hang on, yes it does. In the beloved The Ship Who Sang, often cited as a positive example of disability SFF, not only is Helva locked away in the shell and then in the wall of her ship, doubly consigned to the attic just in case anyone might see her, but all the disabled kids who don't get to be Shell-Children are killed - just think of it as eugenics in action. And of course the one story Amy Sterling-Casil brings up to support her argument and show her 'understanding' of disability isn't Ship Who Sang, it's her own borrowing of Mcaffrey's conceit to make it even worse, while still not seeing the problem. McCaffrey had an excuse, she was, barely, writing before the disability liberation movement broke us out of the hospitals and asylums and 'homes', but for Amy Sterling-Casil, writing in 2016, there is no excuse other than the arrogance to think she didn't need to do the research.
Next we move on to the Medical Model of Disability, aka "You are broken and as a physician I need to descend from my godlike ivory tower to fix you". As you might have guessed from the name, this one is particularly common among the medical community, but also, unfortunately, among SF/F authors, as seen in the predominance of cure narratives on the rare occasions disabled people actually do feature in SF/F (it's also a particular hangup of the Christian churches - I had to stop someone 'prayng for me' in the street just last year - actually he was using me as an object of pity to make him feel good about himself). Sterling-Casil herself indulged in the Medical Model when discussing whether autism could be 'cured'. What she missed, because she didn't bother with even basic research, is that the autism, and wider neurodiverse, community is adamant that they don't need a cure, as are a large percentage of disabled people in general. Of course Sterling-Casil isn't alone, the huge autism charity Autism Speaks is absolutely loathed within the neurodiverse community for its portrayal of autism as a killer of family life that needs to be exterminated. Watch the #actuallyautistic hashtag for what autistic people really think. The disability community is divided on cures, some groups, notably those with Spinally Cord Injuries, are desperate for a cure, as, understandably, are those with disabilities that will be ultimately fatal, such as ALS/MND. But many other disabled people are perfectly happy as we are. In general there is a dichotomy between born-disabled and acquired-disabled, but it is by no means unanimous. A particularly nasty combination of Medical Model and scrounger rhetoric sees disabled people told they must seek a cure whether they want one of not, because anything else would be 'scrounging off the taxpayer'. It's bad enough when this is from the people around us, but there are strong indications the current UK government would like to make it government policy (fortunately the medical ethics requirement for informed consent gets in the way, for now).
You may have noticed I'm not using Person With a Disability (aka PWD, aka Person First) language, the model that says our disability is not all of us, that's because, despite what you may have been told by non-disabled advocates of PWD, the disability community isn't universally in favour of it. There are variations within the different groups of disabled people. The neurodiverse community and the Deaf community both reject PWD, because they hold that being neurodiverse or Deaf are not problems to be fixed, but cultural identifiers (and if you're neurodiverse it is difficult to separate yourself from something that is absolutely fundamental to the person you are!). Yet some supposed allies will deny that this is our decision to take, I saw someone who identified herself as a specialist in disability education tell an autistic person that their preferred identity as autistic was 'incorrect' within the last month. And then there are regional differences, the UK largely rejects PWD because we prefer the Social Model, of which more in a moment. And what do we see Amy Sterling-Casil doing in her blog? Arguing, specifically in relation to autistic people, that we should use her personal variant of PWD. God forbid she might have asked an autistic person what they thought first!
Almost finally, the Social Model of Disability, this is the model I favour, this is the model that looks around and says Actually, we aren't the problem, you are. The Social Model redefines Disability as 'the discrimination we face as the result of the failure of society to remove the barriers we face as a result of our impairments.' It separates our experience of being impaired, from the disability caused by the barriers we face. So the problem isn't that I can't get into places because my joints don't work and I need to use a wheelchair, it's because no one has bothered to make them wheelchair accessible (never mind it's 25 years since ADA became law, 21 years since DDA in the UK - that's a generation, people, and I still can't get into every other shop on the high street!). Similarly the problem isn't me being unreliable because I'm too fatigued or in too much pain or too stressed to make it to a meeting, it's that people haven't changed the way they think about disability to not assign a negative to things beyond my control, and so on. For every barrier, there is one interpretation that blames our disability, and another that asks society why the barrier is there in the first place. The Social Model is a hugely positive model for change.
And then, finally, there's the Biopsychosocial Model. This started up as a pretty positive academic model of disability that noted that psychological effects would play into recovery (though the whole recovery thing is problematic, as noted above). Then that conservative backlash got hold of it in the form of Unum Provident, a major US insurer. Unum took the biopsychosocial model and combined it with the work of right-wing US sociologist Talcott Parsons, and his concept of 'the sick role' (i.e. disability) as 'socially deviant', and soon Unum was denying thousands upon thousands of disability insurance claims on the grounds that people 'weren't trying hard enough' to recover, never mind many of the claims were for incurable disabilities. They might have gotten away with it if they hadn't been quite so blatant with their 'disability denial mills', but they ran headlong into a massive class action suit honcho'ed by the New York State Attorney General, who branded them 'an outlaw company'. Unfortunately not before Unum had convinced the UK to make the biopsychosocial model of disability the officially approved government model. Which led to the tragedy of the Unum-inspired, Atos-operated 'Work Capability Assessment', with at least 80 disabled people dead through suicide to date (a recent piece of research suggests the true figure may be in the high hundreds), and which single-handedly almost brought the UK court system to its knees as disabled people in their hundreds of thousands successfully appealed the rulings that denied them disability benefits, while the conservative press bragged that '75% are faking'.
And that's the social attitude towards disability that Amy Sterling-Casil blithely tried to drive a horse and cart through, because actually going out and doing the research to realise that 'We Are All Disabled' would be hugely offensive was clearly unnecessary, because everyone knows about disability, don't they?!
Disability, it's more complicated than you thought. But the great thing about ignorance is you get to go out and fix it yourself! I really do want more people to write about disability in SF/F, I want to see people like me in the stories I read, but please, do the research first, just like you would for any other oppressed minority you desperately want to get right.
***
To close a (probably non-exhaustive) list of blogs and so on about this that haven't been mentioned elsewhere in the text:
SF Signal: An Apology
Foz Meadows: Empathy is Not a Disability
Shaun Duke: Why I Try Not to Talk About Things I Know Nothing About
Tili Sokolov: Human Flaws and Disability: Not the Same Thing
A C Buchanan: On Empathy and Building Spaceships
Jessica Strider: Sarah, Please Keep Doing Special Needs in Strange Worlds
Annalee: The Geek's Guide to Accessibility
Thursday, 4 February 2016
Anatomy of a Car Crash, or We are not 'all disabled'.
ETA: Amy Sterling Casil has apologised for "We Are All Disabled". It's one of those apologies that spends all its time saying "You're reading it wrong, and being nasty to me." Judge for yourself here, I'll be responding when I've calmed down enough from the analogy she appear to draw between the people criticising her and the man who raped her.
***
A few people may have noticed a tweet from SF Signal last night:
Apologies to all for an offensive post. It has been removed. We'll be more careful about handing over a bullhorn. #fb— SF Signal (@sfsignal) February 5, 2016
The post went up without any context, but after suitable prodding by those of us who had seen it, they admitted it was about disability.
The post went up in their 'Special Needs in Strange Worlds' column (which incidentally is a title I loathe with a fury) and it was titled 'We are all Disabled'. I knew from the moment I saw that title it was going to be a car crash, I just didn't realise how bad a one. SF Signal did pull it, but I think that lost us an opportunity, it cost us the chance to explain to people why the view of disability it gave out is so wrong it's actually dangerous.
And worse, it's a view of disability that is a common narrative within SF/F
Fortunately I snagged a copy.
I'm not going to tell you who wrote it, they need to learn where they went wrong, not face a witch hunt. But their bio identified them as a Nebula winning author. That's the professionals awarding professionals award in SF/F, the nearest we have to the Oscars in structure (the Hugos being closer to the Oscars in scale). And you would hope a Nebula winner would have a pretty good idea of what is acceptable in a story and what isn't, and flowing out from that, what is appropriate to say in a factual article, and what isn't.
Apparently not.
They opened by claiming 'a severe, lifelong disability' that 'could have cost (their) life on several occasions'. Then explain that their disability is that they are 'empathetic'.
I'm sorry, what? Empathetic? Can you point to the page covering that in the ICD-10? (That's the International Classification of Diseases, 10th Edn) Or any other definition of disability?
Now in general I have a distinct problem with people being challenged on their disability, but when it's no disability anyone has ever heard of? It's just possible it's a clumsy attempt to dress up a better known disability in some kind of metaphor, but it's definitely problematical when combined with everything that comes later. If it is metaphor, then it was absolutely the worst possible time to use it.
They
then segued into a tale about being on a con panel, talking about genetic
manipulation, and being approached afterwards by someone who asked: "Do
you think they'll come up with a cure for autism?"
And they respond "It's possible."
I'm sorry, but when did eugenics become socially acceptable? When did the erasure of a disability group, a disability group which is especially vocal in its rejection of any need to be cured, become something that can be calmly talked about in the pages of an SF site?
Well, forever, I guess. Cure narratives (also called erasure) sometimes seem like the only stories about disability that SF/F ever publishes (barring honourable exceptions like Accessing the Future). And autism is a disability* that has been a target time and again. Weber did it for autism in the Honor Harrington books, and as an example of how the good guys are 'better' at medical ethics than the evil slave-trading eugenicists. *headdesk*
Full disclosure, I've been told by a medical professional that I'm somewhere in the vicinity of the Autism Spectrum. I can't (and shouldn't) claim the status without the formal diagnosis, but I'm certainly neurodiverse via other disabilities (dyspraxia), so I should declare an interest here. I might not think entirely like the neurotypical majority, but I'm certainly not eager to be cured of being me - I rather like being me, even if the world is occasionally perplexing and difficult. But apparently there are a lot of authors and editors out there who see that as being something that should be fixed at the first opportunity (a bit like taking the dog to be 'fixed?').
Imagine that. Pick some facet of yourself that's a little bit uncommon, and imagine picking up a book by your favourite author and finding it says that people like yourself shouldn't be allowed to live, that they are so broken they need to be fixed. Unpleasant, right? But that's what a lot of SF/F is like when you're disabled, especially if you happen to have multiple disabilities (says the neurodiverse wheelchair user with anxiety issues).
There's another term that probably gets the intent across more clearly: ethnic cleansing.
Our author then mentions being parent of a child with Down's Syndrome. Now that's disability ally status all on its own. Then they blow it.
"This young chap would never know that, nor would he care if he knew."
Oh! My! God! They did not just say that. The worst cliche about autism, the worst Urban Legend about autism, that people with autism have no feelings, and they went there. The irony is, the most empathetic people I know, because yes, empathy is a thing, though not a disability, are my friends who have Autism Spectrum diagnoses.
It gets worse. The person talking to them says both they and their partner have autism, and don't want their kids to have it. Now if our author had actually done even minimal research (more on that soon), they would have realised this was a spectacularly atypical opinion in the neurodiversity community, and in any case not one that should have an allegedly pro-disability anecdote built about it.
"Uncharacteristically for someone with autism, he touched my arm. He was so very frightened!"
Uncharacteristically for someone with autism, if you happen to believe every cliche ever written rather than going out and doing the due diligence, a.k.a. the research!
“'There’s a reason God made autism,' I said"
*Headdesk* *Headdesk* *Headdesk*
You know those motivational posters that show a disabled person and say "The only disability in is a bad attitude!" well, disabled people hate them, we call them inspiration-porn. A friend of mine rewords them as "The only disability in life is a bad platitude!", and that's what our author is pulling here - God put disabled people on the planet so the rest of us can feel good about ourselves.
Anecdotal flashback over, they inform us that "Autistic people have massive gifts."
Ah, no, you're thinking of Rainman and autistic savants. Mostly people with autism are just normal people who don't quite think like you do.
"One of my favorite films is The Temple Grandin Story. Temple’s wonderful teacher, tells her mother (also wonderful), that Temple is different from other children. Both mother and teacher agree that Temple is: 'Different, not less.'"
Wow, close escape, I thought Temple Grandin was about to be branded 'special'. But note how the disabled person is defined in terms of the non-disabled people around them. In fact our author never mentions that Temple Grandin went on to become a prominent autism activist and noted professor of animal behaviour.
"It was then that I realized my perceptions really were different from most others. I had the opposite of autism."
Sigh, they went there. "I'm empathetic, I'm the antithesis of autistic"
Only if you don't know the first thing about autism. (I actually wonder if what the author is trying to describe by 'empathetic' isn't something on the autism spectrum).
After a bizarre little aside on sociopaths we get "Why am I writing in this manner?"
Damned good question!
"Why am I not giving examples of how I’ve included those with “special needs” in fiction I’ve written? Why am I not extolling my virtues as a writer and how important it is to tell stories about those with special needs?"
Okay, I can't take it any more, I know the column is called "Special Needs in Strange Worlds", I know a lot of non-disabled people think it's an appropriate term to use. But do the damned research! A significant part of the disability community finds "Special Needs" offensive. Think about what it's actually saying. It's saying that our needs as disabled people aren't normal, that we aren't normal. And when people don't think we're normal, they don't see us as really human. "Special Needs" actively denormalizes disability, and justifies treating us differently to everyone else.
As for that thing they aren't talking about? I think they mean tokenism.
"We have today’s technology, tomorrow’s, and the very idea of going to the stars and a great deal of the means to get it done, in large part because of the work of those on the Autism spectrum. Our lives have changed and grown because of the FLK’s (Funny-Looking Kids) and FAK’s (Funny-Acting Kids). They are precious, valuable, essential."
Please, make them stop!
"But making and doing and living are three different things. Humanity will deserve to leave this planet and go to the stars, and we’ll be able to survive and thrive—because of people like me."
Modest much!
"How can I possibly say we are all cripples?"
Okay, brief aside on disability history and the reclamation of terms of abuse. 'Cripple' is an unacceptable term, it is a historically pejorative term for disability predicated on inability, and blaming that inability on the disabled person, rather than on society's failure to remove barriers. Much as with the N-word in the Civil Rights Movement, 'cripple' has been reclaimed by the Disability Rights Movement. It is a term whose use is only acceptable in-group, and then only if it is known to be acceptable to the person involved. I use it, I call myself a crip. I'm permitted to use it, because I'm disabled. I absolutely cannot use it as a general term of address. Out-group members may not use it as a matter of basic manners. Do the damned research!
"When a physically able person sees someone in a wheelchair and feels “sorry” for them, they should consider the different perceptions that wheelchair enables them to have. They see and hear things those who stand and walk do not."
Wheelchair user here. The only thing I see different is people's belt-buckles up close. The only thing I hear different is people ignoring me, or treating me as though I have an intellectual disability, rather than being a rocket scientist.
(Okay, I'm not a rocket scientist, I'm a flight controls engineer, close enough for government work, and not that there's anything wrong with having an intellectual disability - in fact technically I do).
ETA: I realised later that this is an invocation of the magical crip trope, which I normally see applied to my neurodiverse side, not the side of me that is a wheelchair user. The magical crip trope is loathed because it says 'living with disability must be so horrible they should get special powers to balance things out." Let's get things straight, I like being me, I like being disabled, I am a better person because I am disabled and no longer a straight white middle-class male oblivious to the privilege in which I exist. And these views of disability are widespread among disabled people. But you would never know that from reading SF (with a single honourable exception for Scalzi's brilliant Lock In).
"They get to live a different life. Different, not less."
I think the phrase you're looking for is patronised more!
"I wrote one well-known story called “X,” about a young woman named Y, wheelchair-bound, blind and spastic with a heart defect. Y won the lottery to be housed in a hardened spaceship —to get a perfect, near-immortal cyberbody—and travel to the stars. Hot damn! Y doesn’t want to go. She’s in love with John, a handsome young man who’s been visiting her out of a partially misguided idea of charity. John’s been lying to Y, as people will do. By the end of the story, it’s clear who the real cripple is. Not Y – she can and will go to the stars.
Oh, dear god, make them stop!
(I've removed the name of the story and character because, as I said, I don't want to make this about the author.)
This is basically a reworking of Anne McCaffery's The Ship Who Sang, where Helva is locked away in a shell, and then doubly locked away in the controls of a spaceship (and so many people miss that all the other disabled kids who don't get shells are killed - eugenics in action). McCaffery should never have written this, it says the best place for disabled people is locked away in the attic (those we don't shoot, anyway). But McCaffery had an excuse, she wrote Ship Who Sang in the '60s, (just) before the disability rights movement broke us all out of the asylums and nursing homes. But our esteemed author isn't writing in the 1960s, they're writing now, and there is no excuse for not knowing how offensive this is apart from the fact no one ever listens to disabled people when we tell you. And damn, Y doesn't even get the guy at the end!
Note also the piling together of disabilities, apparently with the intent of making it clear that life as a spaceship is better. Which part of treating disability as equally valid to non-disability did our author miss?
And language points. Wheelchair bound - not acceptable, it implies we are limited by our chairs (or bondage fetishists). My chair doesn't limit me, society does that, my chair is incredibly liberating. The appropriate term is Wheelchair User. The author also uses in a wheelchair which is less offensive, but also disparaged. Spastic - slightly more complex because US usage doesn't recognise the pejorative origins of spastic in disability, but it's considered grossly offensive in the UK, and it is thoroughly disparaged as a medical term. Use Cerebal Palsy or CP instead, please. The author also used differently-abled a line or two later, which is similarly despised by disabled people**, because the only reason for using differently-abled is if you think there is something wrong with being called disabled.
"Now, after writing this, I understand why I am so little satisfied – these days, even disgusted – with fictional stereotypes. These stereotypes are an imposition of a limited, false image or idea on others."
You said it!
"Viewed with the strongest perception that we can have at any given time, there is not one of us who is not a 'cripple.'"
That's it. They managed to erase the entirety of disability.
I'm sure this isn't deliberate, but the degree of ignorance of disability, the sheer lack of clue, is breathtaking in its extent. The author manages to erase autism, claim wheelchair uses are 'special', and then produces an example story for us to mimic whose entire plot revolves around locking the disabled person away in the attic, because god forbid we might have to look at them. And for an encore they erase disability in its entirety.
You're probably thinking 'Wow, he's angry!" Damn straight I am, and shouldn't I be? This is the standard of post we get supporting us? If someone can't be bothered to do the basic research to work out what terms and views of disability are acceptable, then isn't that just a little bit contemptuous of us? And if it isn't just an individual, but an entire genre? Well, it's a pretty good explanation of why SF/F doesn't get a passing grade when it comes to #WeNeedDiverseBooks.
I've just taken an urban fantasy novel with two diverse protagonists, one neurodivergent, one a wheelchair user, through #Pitchwars (and I should be shopping it to agents, but brain weasels are getting in the way), because it doesn't look like anyone else is going to produce an SF/F novel that handles disability realistically, that doesn't portray it as a negative, so seems like I'll have to do it myself. And I know I'm not the only disabled author who is doing that.
But it shouldn't be down to us. Fiction should reflect diversity, and somewhere between one person in six and one person in four is disabled in some way. Think about that. If you have six people in your novel, at least one of them should be disabled. It isn't difficult to write disabled characters, there are disabled people out there who will help you get it right. But we can only help if you put us in the books, and if you DO THE DAMNED RESEARCH!
END
* Quite a few neurodiverse people hold that autism isn't a disability, that it's the co-morbid stuff like sensory hypersensitivity that's an issue. I agree.
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