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

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