On ‘Giving Up’

I struggled for a Blogging Against Disablism Day topic this year, which isn’t the good thing it might seem. It means that many of the aggressions we face have become so normalised we tend to overlook them. But then a friend posted something, an incident of wheelchair-related inspiration porn that had hit close to home, and I had my topic.

Checking back, it looks like I didn’t do one of these last year*. It’s always a slightly awkward weekend for me, but last year I was also 3 or 4 days post-surgery (not disability related), so maybe I can be excused. So that makes this the first BADD essay I’ve written since opting to become a wheelchair user.

Yes, opting. I could probably still be wobbling about on crutches if I wanted to. And boy does that confuse society. Society has this whole set of value judgements built around wheelchair use. It’s ‘giving up’, they would ‘rather be dead than in a wheelchair’, they are endlessly fascinated by ‘so, can you still have sex?’, and so on. But I hired a wheelchair for Worldcon back in summer 2014, and I had more energy left at the end of five days in the chair than I would have had after one day on crutches. With the chair I managed five days, without it I might not even have managed that first day. That was a very persuasive argument.  The idea that this represents 'giving up' is strange. I was artificially limiting my life because I was worried about how society, and my family, would react to me choosing to ‘give up’. As it turns out, my family were fine with it, and close friends have been universally supportive. I’m kicking myself for not doing it years ago.

But I meant to talk about society and not me. I’ve had a not particularly good chair for a year, I’m getting a much better one in a couple of months. It’s taken a fight to get that, the OT’s and technicians of Wheelchair Services are pretty good, but you have to fight your way past their gatekeepers and I might still be trying if I wasn’t so articulate, and even with that and the aid of friends who know what to say to manipulate the system it’s going to be nearly two years from starting the process to getting the chair I need.

So you get your bright shiny new wheelchair, which in most cases is a heavy, steel-framed monster that isn’t very good at what it does and transmits every bump and lump in the pavement straight into your backside because it’s a non-rigid frame and that’s what we fob people off with at first, and you head off into society. And you find yourself suddenly invisible. Literally invisible, people don’t see you, they’re looking two feet above your head. Which is weird, it’s not as if society isn’t filled with children who don’t come up to our waists, but try and navigate a crowded street at chair height and you’ll be hoarse from yelling ‘excuse me!’ and ‘watch out!’ to stop people from standing in your path or trying to walk through you. 

And then you get to your destination, and there are steps. On crutches I could get to most places in Rochester. On wheels I’m barred at the door by every other shop, bar and restaurant. I can only get into our regular Saturday coffee place by climbing out of the chair, folding it, and hauling it up three steps. Even newly opened premises have major access problems. Costa Coffee, the biggest chain in the UK, opened a new coffee shop in Rochester last year. They gutted the building, taking out a quarter of the ground floor to put in a staircase down to the basement. They left the step at the entrance. Just to completely take the piss there’s a sign on the door saying if you need help just grab any member of staff – but to do that I’d have to be inside, and getting inside is the help I need!

It would be very interesting to grill a council planner on how they let that slip past, refurbishment of that scope brings the building within modern access regs, but that’s not the first thing I’d like to do with a council planner. Rochester is a tourist destination, I understand that, it lives on its Dickensian ethos, but that doesn’t mean you have to put cobbles every-damned-where, and especially not full width across pavement and road so they’re unavoidable! I’d really like to put the planners and the politicians on the Planning Committee in a chair and have them roll up and down the High Street a few times. I guarantee you they would be a whole lot less enthusiastic about cobbles and heritage paving afterwards (and a whole lot more hesitant about sitting down for the next few days).

Travel with the chair is similarly interesting. I took it to Greece last summer, and found that in neither of my booked hotels could I get it into the lift to get it up to the ‘accessible’ room I had booked. Not without getting out and folding it anyway. The ‘accessible’ bathroom with the towel rack above my standing head height in the first of those was an interesting design feature, though the second was excellent. Just a pity I couldn’t get to half of either room because of unthinking layout. Air travel was trouble free in my case, but I know many people still run into difficulties. My problem has been with trains. I’m fortunate that the local station works on a turn-up and go basis, the platform staff will happily get the ramp and put me aboard; it’s when I’ve actually had assistance booked that it has the chance to fall apart. I’ve had problems on fully 50% of my journeys – assistance not turning up, turning up at the wrong station, not being passed on from one Train Operating Company to the next and so on. And for this I’m expected to give 24 hours notice?

I had an interesting encounter on the train last summer, mostly being in the wheelchair space means no one is sitting opposite you, the seats fold to create room for the chair, but there is just room for someone to sit in the aisle seat if they don’t mind sticking their feet slightly sideways. On a crowded service I invited someone standing to take advantage of that, and we were having an interesting conversation until he looked at the chair and said “I presume from the wheelchair you don’t work.” 

That’s such a fascinating presumption. As it happens I don’t work due to disability, but that’s completely independent of the chair. Yet the presumption is chair=incapable of working, and I know he’s far from alone in that presumption. I don’t understand that. I worked with my mind – software engineer, using a chair doesn’t stop my mind from working. It was attitudes to disability that actually stopped me from working, and the attitude that if I’m using a chair then clearly I can’t be capable of working is just a variation on that.

Attitudes to working while disabled are one of my campaigning focuses. The government’s Disability Confident scheme, when it isn’t claiming workplace disability discrimination doesn’t exist, is heavily focussed on inspiration porn (using disability to make non-disabled people feel good about themselves). Employers are instructed to “See the Ability, not the Disability” and Paralympians are rolled out to tell them, well actually they’re just rolled out, to ‘inspire’ them. And the employers are soooo inspired. But actually none of this is doing anything to normalise the perception of disabled workers as just another kind of normal; and if you don’t ‘see’ my disability, how can I be confident you will make the appropriate allowances?

And ultimately that sums up all the issues I’ve rambled through. Society doesn’t see wheelchair use as normal, it sees it as exceptional, and not in a good way. For disabled people, wheelchairs are liberating, a route back to active participation in society. But when society looks at wheelchairs it sees them as representing the other, as pitiful, as exclusionary. To quote an SF/F author who responded to me talking about disability identity and the failure of society to listen to disabled people: “Disability isn’t an identity, it’s a predicament.” 

Disability isn’t a predicament, it’s who I am. Wheelchair use isn’t a predicament, it’s my legs, it lets me do far more than I can do with the set of legs I was born with. Opting to use wheels wasn’t ‘giving up’, it was the antithesis of giving up: ‘I can do more this way’. 

Maybe when society talks about ‘giving up’, it’s really talking about itself. About its failure to remove barriers, its failure to see disability as normal and not ‘the other.’ 

Maybe it should do something about that.


* ETA: Actually I did blog, I just didn't put it where I normally do. Because we were deep in the UK's electoral campaign at the time I posted it at Where's The Benefit.

SF/F, Disabled Voices and #DVpit

SF/F and Disabled Voices

I’ve been thinking a lot about disability and Science Fiction and Fantasy lately. Partly that’s inevitable, I’m both disabled and an SF/F author, and I’m currently trying to market the Urban Fantasy meets Police Procedural novel I took through Pitchwars at the end of last year – an exhilarating, exhausting process that was a fantastic opportunity. A novel which happens, not so coincidentally, to have disabled protagonists.

But I’m also a reader of SF/F, a fan of SF/F, and the way the genre treats disability worries me. There’s a general movement of late, triggered by We Need Diverse Books, to push for the greater representation of minority voices across all genres and all forms of diversity, but when it comes to disability I’m not sure adult SF/F could recognise an authentic minority voice even if we walked up and hit them with a crutch. There are some disabled voices working in YA SF/F, check out Disability in Kid Lit and DiversifYA for reviews and articles, but adult SF/F often seems a disability desert.

It’s vanishingly rare that we get disabled characters in adult SF/F who aren’t there to fill in the token-minority-sidekick or see-not-all-my-characters-are-Straight-White-Males role, and when they do, they’re almost inevitably there for Inspiration Porn, where the disabled character is used to let the other characters and/or the reader feel good about themselves, or because the author wants to write a Cure Narrative ending, where the disabled character is cured of their disability in order to create a cheap feel-good sensation for the readers. Which is Erasure. And then there’s Eugenics: “Oh, we cured autism centuries ago”, to paraphrase the ‘good’ guys in one of the most prominent SF/F series of recent years – the authors clearly didn’t bother to ask what the autistic self-advocate community thinks on the matter, even though their opposition to a ‘cure’ for autism takes about 30 seconds to google. Erasure again. And when a disabled character does get some actual agency within the story, it’s usually because the author is using ‘disability’ as code for ‘is evil and self-loathing’.

As writers we’re urged to be extremely careful in resorting to cliché, yet as soon as disability enters the scene even the best of writers seem to plunge their hand into the cliché jar and pull out an oozing handful. Whether Tokenism, Inspiration Porn, Cure Narratives, Eugenics/Erasure, or Coded Villainy, disability in adult SF/F is overwhelmingly used as a tool to overtly manipulate the reader, rather than portrayed as normal. I’ve even read an SF/F novel that quite literally turned the love-interest’s disability on and off to suit the convenience of the plot – oh, that real life disability worked so neatly! Adult SF/F novels that treat disability as a normal minority identity are vanishingly rare. SF/F novels that do that, and have the disabled character in the protagonist’s role, are the black swans of the SF/F world, legendarily out there, but rarely seen.

Two recent incidents have convinced me the lack of comprehension of disability amongst published SF/F authors is even worse than I thought. The first was pretty well publicised, the SF Signal “We Are All Disabled” fiasco, a guest column in their “Special Needs in SF” (ick!) series, that displayed breath-taking ignorance about autism, claimed disabled people get special sensory powers (for real, not just in fantasy, and she was talking about wheelchair users like me), and then tried to erase us all by claiming 'everyone is disabled'. I wrote about that incident here and here. The second one was on an SF/F message board, where I’d raised some points about lack of comprehension of disability and disability culture, as illustrated by cure narratives, only to have a prominent SF/F author, with a significant following within fandom, inject himself into the discussion to proclaim to me that “disability is not an identity, it is a predicament” and go on to deny that there are disabled people who don’t want a cure, even though I’d pointed out the significant groups of disabled people who very publically don’t, and had stated I belonged to several of them.

That refusal by majority society to listen to minority voices is so well established it even has its own clichés, the “uppity n-word” and the “bitter cripple”, used to dismiss not just our concerns, but our right to a voice. And when that silencing is combined with the perpetuation of clichéd views of minorities such as ‘all’ disabled people wanting to be cured, or that disabled people are all self-loathing (and villains), then it becomes not just the denial of a voice, but actively dangerous.

DVpit

And that’s why an opportunity for diverse voices of all kinds to be heard is so valuable, and #DVpit promises to be one such. #DVpit is the idea of literary agent Beth Phelan and takes the idea of  #pitchwars, #pitmad and similar twitter-based manuscript pitching events and applies them specifically to Diverse Voices.

It’s happening on the 19^th April – Tuesday coming – from 8AM EST until 8PM EST, and full details can be found on the #DVpit page here, but the general concept is that if you have an unpublished manuscript that’s ready for submission, with minority group protagonists, and especially if you’re a minority group author yourself, then this is your chance to sell yourself to a whole heap of agents who are going to be watching the #DVpit hashtag and specifically looking for diverse authors telling diverse stories.

The catch is you have to do it in the 140 characters of a single tweet (the rules of the contest allow one pitch per hour, but that’s to get coverage across the 12 hours that #DVpit runs, not to split one extended pitch over several tweets – at one an hour that’s unlikely to work well). So that’s going to need your ability to precis your story honed to a knife edge. And if an agent likes it enough to want to see more, then they’ll like (<3) your tweet and you’ll then need to check their twitter feeds and or websites to see what comes next, which means you’ll need a full synopsis and submission letter ready to go. (It also means you shouldn’t like (<3) tweets if you’re not an agent).

The list of agents participating has been growing day by day, and there are now at least 50 agents across around 30 agencies, plus several editors, announced as intending to take part. And their participation has been backed by a bunch of volunteers willing to help you tweak your pitch to perfection – see the lists at the bottom of the #DVpitch page for both, though it’s probably too close to the event to hope for any significant input from the volunteers (Kayla Whaley, @PunkinOnWheels, has published her most common advice here).

So if you’re an author with a diverse voice, telling stories about diverse characters, then what do you have to lose?

See you there!