Trumperdämmerung - Don't Mourn, Organise

I'm seeing a lot of American friends talking about the need to organise to defend civil liberties in the aftermath of Trump's election. That seems entirely reasonable given his calls for doing away with fundamental elements of the Constitution (freedom of religion), calls for extra-judicial punishment ('Lock her up!'), using the state to harass those critical of him, and calls for the US military to engage in actual war crimes (collective punishment of the families of terrorists). As I've been involved in opposing similarly regressive UK government reforms with respect to disability rights since before the end of the last Labour government I thought it might be an opportune time to talk about ways of opposing government policy.

With respect to my title, which comes out of American history, I think there's actually room for both mourning and organising, and mourning is important to self-care, but this is mostly about organising. The initial version of this was something I posted in response to an online acquaintance asking how people organise to resist when they're spoonies with available physical and mental resources compromised by disability, but in writing it I realised it has wider applicability, so I'm turning it into a blog of its own. This still focuses on the disability side of things, when there's potentially so much more at risk in so many areas, but disability campaigning is where my experience lies. Hopefully most of the lessons should be common to most areas of equality and human rights activism. Anyway:

Most of my disabled friends were fairly apolitical until near the end of the last Labour government, when we realised how bad the new Work Capability Assessment was. Then under Cameron's ConDem government, and now the Tories alone, things got rapidly worse, with a calculated plan to demonise disabled people as lazy scroungers, and pretty much all of us were radicalized into activists of one type or another.

The more active types formed Disabled People Against the Cuts and Black Triangle and protested on the streets. The spoonies, my people, the ones who can't, who may struggle just to make it out of bed, went the web route.* There were several news/blog sites which formed, and which became influential in documenting what was going on, analysing the reality, and reporting lived experience of harassment and the like, including the casualties as disability welfare reform started to leave people dead**. We started to get journalists following what we did, and recycling our news into national media. In some cases we were invited onto national media to speak directly, and we even had government ministers refusing to appear opposite some of our spokespeople. There were also a small group of journalists who were themselves disabled, and working on social stuff, and who were very useful links.

*Note that you will encounted activists who claim the only valid form of activism is on the streets. 1) they're idiots, 2) they're engaging in ableism, which makes them part of the problem, not the solution.

** If Trump axes Obamacare, then reporting the cost in lives is something that will be necessary, and a powerful message to lay at his door.

A second prong was analysis of government proposals and data to show the actual reality. What became known as the ''Spartacus Report', written by people I know, showed that the government had lied in claiming that disabled people had backed their reforms in a consultation (it was actually somewhere around 2000 against, 12 for). This forced the first defeat on Cameron's ConDem government in the Lords since it had taken power, though they reversed it in the Commons. The Spartacus team followed it with further influential reports (it helped to have a statistician in the core group) that didn't just demonstrate the problems and lies in government proposals, but went deeper to analyse the underlying issues and produce alternate proposals which will work. It's possible to do meaningful work here even on an individual basis. I'm in the process of finalising a piece of work that demonstrates a new policy is actually substantially weaker than the one it replaced, not the stronger replacement the government claims.

A third approach was using pro bono law firms to force Judicial Reviews on the government to rule on the legality of their policies (the sort of stuff ACLU and the Southern Poverty Law Center does in the States). This has rarely stopped them dead, but has been very useful for publicity purposes, so that people see what policy actually means, and very good at forcing the government to produce Mark 2 versions of policy that are slightly less offensive than the initial versions. Often these need someone affected by the policy change to serve as their focus, which can be gruelling.

Another route was activism within political parties, proposing disabled friendly policies at their annual conferences, making sure our voices could not be forgotten, and forging links with politicians who would give us a hearing. We also had the support of several disabled members of the House of Lords who sit as independents and are acknowledged as disability experts. Identify the friendly politicians and allies and cultivate links with them.

It may also be necessary to target supposed ally groups. There has been a very successful campaign to shame charities involved in the government's workfare scheme, often at complete variance to their own declared principles. I personally found it necessary to administer a public rebuke (it trended!) to the crowdsourced campaigning group 38 Degrees, which was deliberately ignoring disability issues, even when its own processes said it should be campaigning on them as a priority. It got somewhat better as a result, but it cost us the opportunity to make a real difference.

A necessary caveat is that most of us have burned ourselves out, to greater or lesser degree. Self-care is important, but burn-out is probably inevitable for a percentage of those involved, so take care of yourselves, and try to keep recruiting new blood.

Ultimately our protests haven't stopped the government, but they have ameliorated the effects, and we caused so much damage to the reputation of some of the firms involved in implementing policy at the point of delivery that one, Atos, actually walked away from a contract worth hundreds of millions, because our campaigning was destroying the value of their brand.

However restricted your abilities, there will be some way to involve yourself, even if just by personally testifying to the effects in blog postings or directly to those around you.

Keep fighting the good fight.

Pitchwars, When You Really Do Need to Phone It In

ETA: I'd hoped to have this up on another platform at the start of last week. I'm not quite sure what went wrong there, so apologies for the late arrival of this when an earlier appearance would definitely have been better.    

OMG! I want to take part in Pitch Wars, but I’ll be on holiday/out of the country/deep in the bush/spending a year dead for tax reasons.

This is the position I found myself in last year – I spent most of the Pitchwars selection period onboard a yacht off Greece, yet I still managed to make it as a mentee. The trick is to do a little preparation. First off, go read the Pitchwars submission information already posted here by Brenda Drake. To repeat the obvious, you need a submission ready manuscript, and files containing the first chapter and your query letter.

With that done, the problem breaks down into three phases which I’ve called:

• Preparation
• Submission
• Selection

The Preparation phase is the pre-Submission period which we’re already into, Submission is that all too brief period from August 3 until midnight August 6 for getting your MS in the Pitchwars door, and Selection is the process by which the mentors winnow down the submissions and end up with a mentee they can work with.

A little more on mentors and Selection before we go further, the process actually varies from mentor to mentor, some will decide purely on that initial Submission, others want to talk to you, take a look at your full MS and figure out whether they can work with you. By a slightly complicated behind the scenes process, which apparently can’t happen this year, I ended up with two wonderful mentors, KT Hanna and Jami Nord, but KT was the mentor who I submitted to and who picked my submission out as one she was interested in (and then grabbed Jami to work with her on it). That lead to a request from her for the full MS, and a few questions, which I was days late in fielding from being in an internet free zone, and obviously I said the right things, because I got an email to say I was in on the day I was flying home.

I was actually out of the country, UK in my case, and away from my computer from pretty much the day after submissions until the day the mentees were announced. I got the email to say I was in 10 minutes before I checked out of my hotel. I wasn’t entirely out of contact for all of it, I had 4 days in Athens at the end of the period, but for most of it I was completely off the grid. With a bit of preparation it would still have been possible even without those four days, though if you’re completely off the grid you will lose any direct interaction.

Initial Preparation:

First, get your mentor selection done early. I did do that, then managed to lose the file and had to recreate it in a scramble the evening before Submission, so make sure you have a safe copy somewhere. I didn’t have a wide choice of mentors due to genre and age group, but some of you will and that will mean setting aside a sizeable chunk of time for researching and narrowing the field.

Next, not only do you need a complete MS, and a complete first chapter from it, but you need to make sure those are in submission format: double spaced lines, etc. There are a lot of guides out there, if you aren’t writing in submission format you need to change at the first chance you get, and it likely will take longer than you expect, so set an afternoon or evening aside to do nothing but.

Similarly, you need your query letter, and a synopsis, because mentors may ask for a synopsis and you don’t want to be writing one on the fly. There is a lot of discussion on queries, just check the #Pitchwars hashtag, so I'll just say a few words on the synopsis. Even if your mentor doesn’t ask for a synopsis, you will definitely need a synopsis by the agent round, so it is work that has to be done, it won’t be wasted. Your synopsis needs to be short, ideally just a page, two at most, something that sketches in the broad action and nothing more. Mine came in at 620 words, about a page and a half. There are a lot of guides to writing synopses and pitches, no two in complete agreement. Find one that works for you and put it into practise as early as you can.

Next you need to make sure that any mentor can get access to your full MS if need be. What I did was open a Drop Box account, and create a shared folder (using the guidance in the Get Started With Drop Box.pdf file that should be in your new Drop Box folder – basically create folder, select it, right click, select share). That process gives you a web URL, which will allow anyone using it read access into that shared folder (and only that shared folder). Similar facilities should be available with most other cloud services. Into that shared folder you need to put: Your full MS, your synopsis, and (IMO) separate files with either the first 50 pages of your MS, or the first six chapters, or both, because they are such a common request it can’t hurt. If you think other files may help, I included a timeline, they can go in there too, but there is no guarantee that the mentors will look at them. Have someone else: friend, family, CP, confirm that the link is working and they can read the files in the shared folder.

That shared folder URL needs to be added in a note at the bottom of your query, explaining that you are away from home during the selection phase, but that the full MS etc are available at the URL. You could put it on your bio (see below), but I’d recommend against – publishing the URL means you can’t control who can look at that folder.

Next you need a Pitchwars bio. I was hesitant to write one at first, but I think they’re helpful to let a mentor get a feel for you if you aren’t going to be available to talk to. It needs to cover a little bit about who you are, a lot about your writing and why you write, and a little bit about other interests. You’re writing a pen picture of who you are and you need to convince the mentor that they can work with you and that you are capable of completely rewriting your MS in two months. Take a look at other people’s to see what they’re covering and adjust as need be. Mine can be found here, you’ll see I went for a slightly humorous tone. You’ll notice a lot of mentor and pitcher bios are chock full of animated gifs, which is something of a Pitchwars tradition. You don’t actually need them, they give me a headache, plus I have friends with photo-sensitive epilepsy, so my bio was gif free.
And that should be it. But do it in advance, don’t leave it until the last minute.

Submission

If you need to make arrangements for submitting, make sure you do this well in advance. Study precisely what that page on submitting says. If you’re about between the 3^rd and the 6th, great, you can do it yourself. If not, I’d suggest putting it in the hands of a trusted friend or family member, ideally a trusted CP if you have one as they know exactly what this means to you. Of course this means you need to make sure in advance that they have your first chapter and query ready to go, with very clear instructions on which mentors they are to submit to.

Selection

If you’re completely out of touch, there’s not a lot you can do, try to relax.

If you’re intermittently in touch, then your smartphone or tablet is your friend. An important point to consider, keeping them charged! If you’re in the boonies or a different country, this may be more difficult than you’re used to. Even if you’ve planned for it, things may go wrong. I had expected to be able to charge my phone and tablet and have at least phone service in the evenings when we were in port, but we found the household circuit on the yacht wasn’t working, and while we could run a single charger off the radio, that wasn’t completely compatible with my phone. So I actually ended up with phone coverage the first night, and then nothing more, even in harbour, until the last four days of my holiday when I was ashore in Athens. Make sure your phone or tablet is set up to hook into your email account, and that you know how to use it if you don’t normally do email from it. If you can put your full MS etc on phone/tablet, and have them available to send as attachments, then so much the better, but don’t rely on this. If you lose your phone, have it stolen, drop it, or just can’t charge it, then that Dropbox folder is going to save you.

That’s about all the advice I have on submissions; so good luck, your mission, should you choose to accept it, is to have all this in place by the 3^rd.

Rather You Than Me

Should I, Shouldn’t I

One of the messages we hear repeatedly as writers trying to make the leap to professional is that we shouldn’t say anything controversial on the net, because agents and publishers will google us as a form of due diligence. But when you’re a minority group writer and something deeply problematical is being said about your minority, then you’re pretty much compelled to comment.

And when a summer blockbuster’s message is that people like you are better off dead, how can anyone with a claim to represent #OwnVoices not comment?

Live Boldly

The PR folk for summer rom-com blockbuster Me Before You, based on author JoJo Moyes book of the same name, probably don’t know whether to laugh or cry. Their film has drawn far more attention than they might have hoped, even breaking into the nightly news shows, but that’s because disabled people are picketing the showings and have thoroughly pwned the social media coverage, subverting the #MeBeforeYou hashtag into #MeBeforeEuthanasia, and making #LiveBoldly about the things we do, not bitter misery.

Me Before You, The Plot in 75 Words

Manic Pixie Dream Girl Lou gets a job at the local castle (because all British towns have one*), which turns out to be looking after the quadriplegic heir to the estate, who is the standard self-loathing Bitter Crip (and an incredibly handsome multi-millionaire). Lou tames Bitter Crip Will, convinces him to enjoy life. Will thanks her, then flies off to Switzerland to top himself, leaving her loads of dosh and an instruction to ‘live boldly’.

I make no apologies for totally spoiling Me Before You’s ending for anyone who hasn’t seen the story, because the two messages people will take away from it are ‘being a wheelchair user is a fate worse than death’ and ‘disabled people are burdens’ and as a wheelchair user I have a pretty fundamental problem with both of them. It also solidly reinforces the ‘bitter cripple’ cliché, which is again deeply problematical.

If you want more details on the plot, I’d recommend Cara Liebowitz’s storify of ‘Cara Hate Reads Me Before You’, in which Cara took one for Team Disability by reading Me Before You and live-tweeting the experience. It’s particularly good at looking at the minutiae of disability that the book fails to capture because of insufficient research. There’s also Kim Sauder’s analysis, which probes into it in a more structured manner.

* Okay, so yes, mine has sixteen.

Doing the Research

JoJo Moyes, the author of Me Before You, the book, and the screenwriter of Me Before You, the film, has said in interviews that she had the idea for writing the story after reading about Daniel James, a rugby player who became a quadriplegic after breaking his neck during training, decided he couldn’t tolerate what he called ‘a second class existence’ and then insisted his family take him to Dignitas, the notorious Swiss euthanasia clinic. She admits to not having talked to any quads before writing the book, depending solely on her experience as relative of a child with a progressive disability. There have been mentions of the director and cast talking to people with spinal cord injuries during the development of the film, but the context has always suggested these were people in rehab. For disabled people, this rings immediate alarm bells – at no stage does anyone from the production appear to have talked with a wheelchair user with a stable and mature view of their own disability (that's ‘mature’ in the ‘no longer evolving’ sense). An assumption that is reinforced by their repeated use of the deprecated ‘in a wheelchair’ in interviews rather than the much preferred ‘wheelchair user’. If you can’t even be bothered to find out a minority group’s preferred terminology for themselves, it really doesn’t reflect well on your research. 

There is an adaption process to disability, especially sudden disability, which often takes years, and the best analogy may well be grieving. Even people who are born disabled can go through this if they develop new disabilities or their existing disability worsens. Just as we wouldn’t advise people to make life-changing decisions while grieving, so we shouldn’t advise people to make life-ending decisions while adapting to disability. But that’s the story Moyes creates, and with the Manic Pixie Dream Girl, the money, the castle, and everything to live for, Will still decides disability is a fate quite literally worse than death. Lou does manage to pull him part way out of his bitterness before his final decision, but even that is problematical, teaching us that disabled people need non-disabled people to show us how to live – we call that infantilization, reducing us to a childlike figure, and it is considered a form of disability hate.

It’s clear Moyes did little if any research into Euthanasia when she claims to have been surprised by the opposition of disabled people to the film. Possibly the most prominent anti-euthanasia group in the UK is Not Dead Yet UK (full disclosure, I’m a supporter of Not Dead Yet), which is explicitly a disabled people’s group. Nor am I certain Moyes did much research around the Daniel James suicide, I remember trying to point out issues with it at the time, and that I and other disabled people were shouted down by the mob for trying to argue that disabled life was worth living. There are disabled people who conclude disabled life is not worth living, but that is largely a problem originating in society’s negative view of disability, which I’ll talk about later, there are many, many more who conclude disabled life isn't actually much different to non-disabled. Unfortunately, Moyes, and Hollywood, weren’t interested in the story of those of us who make our disability our new normal and Me Before You instead chooses to perpetuate the societal negativity that sees disability as a fate worse than death.

A line that came up repeatedly with respect to Will’s euthanasia in interviews with the cast and crew is ‘the right to choose is important’ and it is worth looking at that a little more deeply. None of the proposed UK euthanasia laws that have been defeated in recent years would have been applicable to Will. All have been predicated on applying solely to people with terminal illness. Disabled people would not have been covered unless they were also terminally ill, and Will isn’t. However, it’s clear the pro-euthanasia lobby actually intends treating any law based around terminal illness as simply a first step towards a less constrained law, because they keep using examples in their lobbying that wouldn’t actually be covered. There is a suspicion that this is a deliberate tactic to prepare the ground for a second step down the slippery slope by arguing the law has failed: ‘but you legalised euthanasia specifically for person X, and they're still not covered’. And slippery slope it clearly is; just look at the example of the euthanasia programmes in both Holland and Belgium, with the head of the Belgium programme holding seminars at ‘inspiring’ Auschwitz and both programmes regularly offering euthanasia to people who were not remotely covered by the original laws their governments passed and who are in no way terminally ill. It may be that Me Before You’s ‘the right to choose is important’ is simply another reflection on the dire state of their research, but it may also be offering us an insight into their true beliefs.

Shaping the Message

Despite JoJo Moyes stating that she was surprised that disabled people are protesting, the production company was clearly prepared for it, indeed the security guards at the UK premiere told the protesters from Not Dead Yet UK that they had been warned in advance to expect disabled protesters. Equally there were common elements that turned up repeatedly in the pre-premiere interviews with stars and director that suggested they had been coached to try and pre-emptively shape the message – that ‘the right to choose is important’ line and claiming that the film is neutral on the euthanasia debate, a claim rather belied by ‘the right to choose is important’ being clearly a pro-euthanasia position.

And when shaping the message failed and disabled people seized the social media high ground, the film’s PR people went on the offensive, with director Thea Sharrock repeatedly claiming anyone who opposed it hadn’t read the book or seen the film, so couldn't possiblly understand it, female lead Emelia Clarke saying protesters lacked ‘a full view’, and the repeated assertion from various members of the crew that ‘it’s only one person’s story’. Variations on the Sharrock article turned up in the Guardian, the Independent, Entertainment Weekly, and likely many other venues. No doubt they hoped to counter disabled people’s alternate narrative, but when you look across the breadth of the response, it consistently reads as ‘Go away, the adults are talking’. Telling disabled people that we weren’t clever enough to understand the film’s message left many understandably miffed and muttering darkly about ablesplaining.

Nothing For Us, Without Us, Except Casting

It’s not something that I’m going to focus on, but I’d be remiss if I didn’t mention the film continuing the Hollywood tradition of never letting a disabled actor near a disabled part, in this case made worse by Director Thea Sharrock’s dismissive comments that ‘We spoke to a few, but there were limited options, with due respect to those we saw’ and ‘I believe any really good actor should be able to give you what you need’. Anything except insight into disabled life, that is.

No doubt we’ll be seeing Sam Claflin nominated for major awards for cripping-up as Will come next Spring, that’s just as much a Hollywood tradition.

Critics, What’s Wrong With You People?

Critical coverage of Me Before You has varied from the informed, to the clueless, to the outright offensive, sometimes covering all three at a single venue. The Guardian’s initial review bought into the company line so completely they had to publish a more sceptical second, especially after the first drew criticism for the horrendous line ‘what might make life worth living if you are confined to a wheelchair?’ (changed after complaints to ‘if you are a wheelchair user’, which makes it sooo much better). That second review saw the headline change from ‘Not Just a Tearjerker’ to ‘Deathly Dull Euthanasia Rom Com’. A third(?!?) review  labelled it ‘a precision-tooled tear-extraction device. And if that makes it sound ruthlessly cynical, well yes, it is rather’.

It was only as coverage of the disability protests started to grow that critical analysis of Before You Me started to delve below the surface and probe into its euthanasia trope ('disability snuff' as Not Dead Yet re-christened it). Oddly enough, I was under the impression criticism was supposed to look at things like the plot all of the time, not just when the people it is about start doing the critics’ jobs for them. And we did get some really good analysis in the end, though much of it from columnists with a background in disability writing, rather than from professional media critics. There was s.e.smith’s ‘Why Disability Rights Advocates Are Calling Out “Me Before You” as a Hot Mess’ And this review from Variety captures some of the nuance, or lack of the same, in the way the film sets out to shape our views on disability and euthanasia.

My prize for offense goes to a couple of reviews I only came across as I sat down to write this. ‘Film & TV Now’s Top 5 Tear-Jerkers: Get The Tissues Ready’ tries to rewrite Will’s suicide as a sacrifice, implying a loving relationship with a disabled person is a horrifying negative that everyone has to be protected from. But the prize goes to Owen Gleiberman’s review at Variety, which totally buys in to Will’s life being irrevocably rendered worse than death by his disability, but then levels up on its horrific viewpoint by arguing that the film missed the money shot: ‘if the end of the movie had lingered, a little more explicitly, on Will’s final moments, “Me Before You” could have added $25 million to its total domestic box-office tally'. So that’s a review in one of the leading trade magazines, by its chief film critic, arguing not that Me Before You objectified the male lead for the purposes of disability snuff, but that it didn’t objectify him enough.

I’m sure some people will argue that I’m expecting too much of critics, that they aren’t disability studies academics. But let’s try a though experiment: if, rather than a disabled man, the film had instead been about a LGBT teen wanting to commit suicide because of the hostile world in which they find themselves, and had carried through with it in the same way that Me Before You does for Will, then wouldn’t the critics have been all over it for an utterly irresponsible approach to a real world problem? And if that’s true for being LGBT, then why is it different for being disabled?

The Message that Remains

Both JoJo Moyes and Thea Sharrock have argued that Me Before You takes the ‘brave’ and non-cliched approach by carrying through on Will’s determination to kill himself, yet the disabled guy dying in the end is so common that Bury Your Disabled is just as much a trope as Bury Your Gays/Dead Lesbian Syndrome. The rarer, non-cliched ending is the one where the disabled person goes on to have a normal life, and that’s the one Will, Moyes and Sharrock explicitly reject.

If Me Before You was a one-off, then that might not be a problem, but it isn’t, it’s the latest iteration on Gattaca and Million Dollar Baby and all the rest. It’s simply non-disabled society’s ‘I’d rather be dead than in a wheelchair’ recycled into fiction, which goes on to feed society’s presumption that being disabled is a fate worse than death and round and round the cycle goes, with what actual disabled people think never given a thought. (For the record, my wheelchair is incredibly liberating, I’m kicking myself for not becoming a wheelchair user a decade ago, and I don’t even have a particularly good one. And that’s pretty much the unanimous view of wheelchair users. It isn’t having a wheelchair that’s limiting, it’s not having one.)

The danger of these negative views of disability manifests in multiple ways. For disabled people in general, they’re problematic as they argue our life is a lesser one, and it’s very easy to slip from there to regarding us as lesser. Equally that view of us as lesser and limited in what we can achieve makes it far easier to de-prioritize improving access and other provision for disabled people and for employers to dismiss disabled people as incapable of working as the equal to non-disabled people, leading to the massive 30 percent gap between employment rates for disabled and non-disabled people**.

But where these views are potentially lethally dangerous is for newly disabled people. We see that in Daniel James calling his life ‘a second class life’, in narratives about ‘not wanting to be a burden’. Our society raises children to have negative attitudes towards disability pretty much from birth; it isn’t an exaggeration to describe it as brainwashing. And when someone becomes disabled, the only model of disability they have to draw on is the one that says it’s a tragedy, that their life is now worthless, and that they’ll weigh down their family through the burden of disability. There’s a window of vulnerability, between the realisation that disability is for life, and the realisation that life goes on as normal, even with a disability, where someone can be swung towards suicide by the wrong message, whether that comes from family hinting that they’ll be a burden, from society’s negativity, or from fictional narratives about disabled life not being worth living.

This is particularly a problem where those fictional narratives are built around paraplegia, especially quadriplegia, because society preaches a horror of being reliant on others for personal care, with a particular horror of incontinence, and, for men, impotence. Even if it carried through on the fate worse than death narrative, Me Before You had the opportunity to educate its audience and to show that it is possible to have an independent life, even a sexual life, while still being reliant on carers. For that matter, most paras and a substantial percentage of quads are able to handle personal care and continence without relying on anyone else. But Moyes chose to shy away from that, providing Will with an unlikely nurse to save Lou getting her hands dirty, and Sharrock has expressly said she didn’t want to show any element of personal care, not even hoist use, because she wanted to portray disability as ‘normal’ (or rather she didn’t want to show the normal reality of Will’s disability).

** 48.5 % of British disabled adults are currently employed, compared to 78.8% of non-disabled adults. Figures in the US are worse, with a 44.7% gap.

The Art of Writing (and Directing)

I’m horrified by all of this not simply as a disabled person, but as a disabled writer. In fact particularly as a disabled writer. One of the core messages of the diverse books movements is that stories shouldn’t whitewash out minorities, whether they be ethnic, gay, or disabled people, or whoever, and equally that they should respect those minorities. That means doing the research and finding out what the members of the relevant minority would think of your plot, so that you can be sure to portray them in an accurate and respectful fashion. Moyes seems to have relied on what she thought she knew about disability, a very common mistake, and even if the book version of Me Before You predated the diverse books initiative, the screenplay didn’t. Much the same seems to go for Sharrock, who we know did the research of talking to people in rehab, but then explicitly chose not to use that research to show a realistic version of disability, because she didn’t consider that reality ‘normal’.

Ultimately both Moyes and Sharrock have chosen to tell the story in ways which objectify Will as a cliché of disability, a cautionary tale who exists solely to make the audience feel better about themselves, and that’s the very definition of Inspiration Porn. As writers, as directors, as actors and artists and critics, we must do better.

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.