Creating A Disabled Fictional Character

#WeNeedDiverseBooks is a hashtag that sprang to prominence a couple of months ago after a bunch of authors noticed the flagship author panel for a major book industry conference was rather monotonously white. It picked up a lot of attention, from both authors and readers, who pointed out that our world isn't just white, it's a rainbow of people of colour, and people who are LGBT, and disabled people. Yet open any random book from your bookshelves, and there's probably a greater than 95% chance that the protagonist and the hero (whether one and the same or separate people) are white, straight and emphatically non-disabled. If there is a character from a diverse background, then they're usually the faithful sidekick - Tonto to the hero's Lone Ranger.

There are the odd best-sellers which feature diverse characters as the lead, for instance James Patterson's Alex Cross series, or Lois McMaster Bujold's Miles Vorkosigan novels, but they are few and far between. In general books that openly feature diverse characters in lead roles seem to end up relegated to the mid-list (the books expected by their publishers to do okay, but nothing more). One interesting (and disturbing) facet of #WeNeedDiverseBooks was several authors mentioning that they had been sneaking diverse characters through the publishers by never actually specifying they were Latina, or African American, or gay, but dropping the odd hint that the careful reader would pick up. An industry where you need to hide the ethnicity or sexual orientation of your characters to optimise your chances of being published is clearly one with problems that need addressing. And that needs not just the publishers to set their editorial and marketing houses in order, but also writers to produce books with diverse characters.

As a disabled person and writer, #WeNeedDiverseBooks struck a chord. When it comes to writing I'm in the fairly serious amateur category; one novel completed years ago, another that's sitting at the 70% stage, and a bunch of shorter fiction, one of which sold professionally (but never actually appeared). Disability features in most of my fiction to greater or lesser extent, there's a wheelchair-using major character in the completed novel (though she's an oddity in being mobility impaired, but not technically disabled), while the work-in-progress novel is one-third narrated by a wheelchair-user (point of view rotates among the leads) and another of the leads is almost certainly neurodiverse. While I am mobility-impaired (and neurodiverse), I'm not a wheelchair user, I've used crutches for the past couple of decades, and I've always had a desire at the back of my mind to create a protagonist who uses crutches, so the rest of this article takes the process of creating that character as a basis for a discussion of how to create a convincing disabled character and factors that may need to be considered in writing about them.

Origin Stories: Character or Plot Driven?

Deliberately creating a disabled (or otherwise diverse) character is different from the normal character creation process, we're settling on one physical or mental facet of the character and building inwards from there, rather than letting the character form around their actual character as a person and building outwards towards their physical nature, and different again from having character be driven by the needs of the plot. That difference is simply a reflection of having disability/diversity as the principle driver, the internal characterisation and the external plot factors are still there, they're just playing second fiddle for once.

Just like a superhero, every disabled character needs an origin story. While a superhero's origin story tells you how they gained their powers, a disabled character's origin story tells you what their disability is, and how it came about. Disability etiquette holds that you shouldn't grill someone on the details of their disability and how they became disabled, but for disabled fictional characters, such niceties may not be possible, and this brings us to the first question: is the plot character-driven, or is the character plot-driven. To illustrate this, if the plot requires that a wheelchair-using disabled character stands up at some point (most wheelchair-users can stand to some degree), then, just like Chekhov's gun, I need to establish that they can, and ensure that their disability is compatible with that need, before they ever need to take advantage of that (this was precisely the situation I needed in one of my short stories, the protagonist had to brain the villain at the climax - served him right for assuming a wheelchair user was helpless). On the other hand, if the story is character-driven, then the actions they undertake within the plot need to be compatible with their disability. Generally I prefer the second style of character creation, because that's pretty much how we experience life as disabled people. I can't magically change my disability to suit whatever access issue is currently causing a problem.

Edited to add: I think I need to expand a bit on the need for an origin story: as the author, you need to develop the disabled character's origin story, because so much of their background and characterisation will evolve from it. But whether the reader needs to know that origin story is a separate issue. It's entirely possible to write a book with a disabled protagonist and never to get into the origin story in the published text, or it may be so integral to the character that the plot revolves around its ramifications (c.f. Lois McMaster Bujold's Miles Vorkosigan, whose disability results from and is intimately tied to his family's political position), making it absolutely essential that it is discussed in detail.

Born? Or Acquired?

The next question to answer is when did the character become disabled, because that goes a long way towards defining the character's lived experience. Many disabled people are born with congenital or neonatal disabilities, so there may be issues of growing up disabled to address. How did the family react? How bad was the school system? Were they bullied over their disability? And so on. For acquired disability, the character may have had to deal with significant physical and/or mental trauma, they may have had to revise their career goals, their family life may have been fundamentally changed. I fall in the less well known middle ground, with congenital disabilities that were there from birth, but which no one actually identified, or in some cases noticed, until I was an adult and they worsened to the point they couldn't be ignored, so it's not simply a binary choice, many people will have experienced a progression in their disability, not simply a sudden acquisition.

That middle ground also helps illustrate that the experience of disability isn't divided into two separate poles, it's actually a spectrum of reactions. The clichéd afternoon movie holds that someone who acquires disability is going to go through a significant grieving process, if not become notably bitter, then fight their way back to full fitness (yeah, right); whereas someone born disabled will serenely accept everything that comes their way. But those are simply two potential reactions of many, my own reaction to suddenly acquiring significant disability was more in the 'okay, this is weird, and sort of technically interesting (I'm an engineer), and £$)@ing painful!' range. Most of my disabled friends, whatever their origin, fall into the 'I'm disabled, get over it' camp. Reactions vary, and to healthily reflect the diversity of disability, so should the portrayal of how people react to their disability.

You Pays Your Money and Takes Your Choice

With those two questions settled, we need to settle on an actual disability. It can be something that the plot mandates, it can be something that interests you for personal reasons, that fits other elements of characterisation, or it can simply be something that seems like an interesting challenge to write around. And there can be wider factors at work, you may want to educate people about disability, whether in general or for a specific disability, you can want to make political points around the way society reacts to disability. They're all valid reasons that can influence the disability you pick for the story you want to tell.

A Crutch to Lean On

Turning to my own character creation process, I've wanted to create a character who uses crutches for a long time, because, as #WeNeedDiverseBooks picked up on, we would all like to see characters who reflect our own personal minority, and using crutches both comes with interesting mobility complications, I never have a hand free when I'm moving around, and falls in an interesting middle ground between walkies and wheelies that is rarely explored. Outside of Long John Silver and an Arthur C Clarke juvenile I can't think of any novels with a protagonist who uses crutches, and I'm frustrated by the societal meme that says relying on a crutch is a negative - not for anyone who actually needs one it isn't!

Giving a character my own personal mix of disabilities wasn't going to work, it's too complex and ill-defined for a good story, so I needed to pick another disability, which meant considering reasons people end up as long-term crutch-users. For many people, crutches are a step in a transition between able-bodied and wheelchair-user, but I decided that for reasons of potential long term character development, plus the whole specifically wanting a crutch-user thing, that I didn't want a progressive disability. This largely ruled out neurological disorders such as MS, plus joint-related disabilities like rheumatoid arthritis. I also ruled out spinal injuries for political/educational reasons; society is stuck on the idea of walking as the one valid goal for a person with a spinal injury, while the reality is that a chair is almost inevitably more efficient and liberating for a para, so the last thing I want to do is reinforce the 'walking good, wheeling bad' meme; and of course I already have a para character in my work in progress. Around about last autumn I started seriously looking at the idea of an amputee character. For her (for various reasons my protagonists are usually female) to be a primarily crutch-using amputee I'd need to complicate the situation, because most amputees get by with prosthetics, but I've read enough orthopaedic stuff over the years, in the course of researching my own situation, to know that very high amputees - hip-level and through the pelvis - often find prosthetics of limited utility, meaning some either use crutches near exclusively, or switch between crutches, prosthetic and wheelchair according to the task at hand, which could work for what I had in mind (and I can write about hip and pelvic pain 'til the cows come home). In fact that second option of mixed mobility modes depending on immediate need works even better for my secondary goal of educating people that disability isn't the absolute situation they usually think it is. That decision also acted as a strong driver towards cancer as the reason behind the disability, physical trauma can cause amputation at those levels, but it's rare and usually very traumatic. Simultaneous with that character concept I realised my disabled protagonist would need a strong female friend/partner to bounce her issues off.

With a character concept, I now needed a plot for the character to inhabit (yes, many people would argue this is back to front, but it works for me). My initial concept was a Young Adult Urban Fantasy story, set in small-town America in Washington's Olympic Peninsula - YA as it's a genre I've not explored before (and bone cancer typically hits in the 10-20 age range), America to maximise marketability, Washington state because I've gathered a lot of useful research writing the work in progress, which is set in Seattle (and ultimately because during my engineering career I was once nearly seconded to Seattle, a missed opportunity I've always regretted). Then #WeNeedDiverseBooks came along and kicked my thinking into higher gear, and a few weeks ago I happened to stumble over my earlier efforts to create a crutch-using character while looking for something else entirely, and realised that even if I wasn't satisfied with the disability background for those - four different story starts, four different disabilities - the character, and her background, former helicopter pilot, former officer, engineering troubleshooter, in a lesbian relationship (that one surprised me, I didn't think I'd become comfortable with LGBT issues that early in my writing, but it tied in with the strong female companion idea I already had), would actually mesh perfectly with the crutch-using amputee concept to give me a character I could build a mystery novel around - so bye-bye YA Urban Fantasy novel, and back to the rain-soaked streets of Seattle, where a hard rain's gonna sweep away the fripperies of our character's life and focus her on the things she truly values (Seattle was an enforced choice given I was plotting this without internet access and needed a city I was reasonably familiar with, but there are other elements that make it a good choice, such as the aero-engineering degree offered by University of Washington, which was exactly the one my character would have aimed for, and having the regional cancer centre close at hand).

I had a five hour train journey the next day, and by the time I got off at the other end, Emma Shannon had taken form, and started talking to me, and I knew that the story I needed to write first was her origin story, about how she made the switch from being Emma Shannon, aero-engineering student at UDub and prospective Army helicopter pilot, to Emma Shannon, amputee and cancer-survivor, and magnet for trouble. Ten days later I had 30,000 words in the main story, 10,000 words of plot outline for a sequel, and a hell of a lot of research for myself once I got back in range of a working internet link.

Doing the Research

One advantage of being a diverse author writing about your own area of diversity is that you've grown up with much the research, but that doesn't mean you're granted a complete pass, and if you aren't writing about a group you're a member of, then you have an awful lot of research to look forward to. So, having drafted my plot while in the land of bugger-all-connectivity, I've spent the past fortnight reading up on stuff like orthopaedic oncology, and listening to people on YouTube describing their experience of cancer. I need to do a bunch more research before I can move forward on the next section of the novel, reading up on the appropriate chemo protocols for someone with that precise cancer, side-effects, other areas of treatment (egg harvesting, central lines, and so on). Maybe you could skate over that level of detail, but maybe that level of detail will take your story to new depths. If you don't do the research, you'll never know.

Kill or Cure, Privilege-Check Yourself

A friend of mine noted that "When non-disabled writers do disability; they'd always rather be dead." Unfortunately the reality is that non-disabled people's understanding of living life as a disabled person is both very limited and very clichéd. How often have you heard someone say something like 'I'd rather be dead than in a wheelchair'? I use a wheelchair occasionally, my reaction is more 'damn, this is liberating!' Equally you see people talking about rather dying than being dependent on carers/personal assistants - all my carer-using friends see them as just another aid to independence (though one capable of holding a rather more animated conversation than your average wheelchair), not as something/someone who somehow denies them their independence. Disability may bring change, but so does non-disabled life, you adapt and then it becomes your new normal, and not worthy of comment - this is going to be a big theme in Emma's story.

And then there's the whole cure thing. Non-disabled people tend to assume all of us disabled types really, really want to be cured. Erm, no, my neurodiversity makes me who I am, while my mobility impairment really doesn't matter to me either way, I can live the life I want with the limitations it imposes quite comfortably, thank you. The only thing I'd really want rid of are my pain levels, but even those are largely tolerable nowadays (though I've seen non-disabled people conclude I'm lying when I describe them as they can't imagine functioning with that level of ongoing pain - it's another example of non-disabled imagination failing to understand disabled reality). Nor am I in any way unusual in not wanting to be cured, it's true for many of the disabled people I know, and in certain communities of disabled people, particularly Deaf and neurodiverse, it's effectively the dominant position. 

There are groups of disabled people who do want a cure, it tends to be common in people with newly acquired disabilities, particularly spinal cord injuries, because that's the truth beaten into people by society long before they actually have the accident that disables them: that if someone has an SCI then the only valid response is wanting to walk, anything else is 'giving up'. And sometimes the consequences of that programming are downright tragic. Some people become so focused on getting back to where they were before they were disabled, rather than moving forward with their life as a disabled person, that it becomes their only reason for existence, and if a cure isn't feasible, then that never ends well.

Marieke Nijkamp has a good discussion of the whole cure debate here : The Trope of Curing Disability and DiversifYA has a discussion looking at disability issues and writing here.

There are similar divides around assisted suicide/euthanasia, many disabled people see a need and are in favour, many others see the need, but are opposed, because they also see it as a step back down the slippery slope towards Eugenics and are convinced it will ultimately lead to more suffering for disabled people than it prevents (I'm in the opposed camp). That the opposed camp finds it more difficult to have their voices heard in the media than the pro-camp is perhaps a demonstration of how people can assign views to disabled people based on preconceived perceptions, not what we actually think.

That non-disabled people so often advocate either curing us or killing us as reasonable responses to disability may be one of the strongest lessons you can internalise in trying to write from a disabled character's viewpoint. Ultimately, if you aren't disabled, don't assume disabled people will think the way you do, disability is strange to you, but not to us, so you really do need to run your assumptions past someone who'll know if they are appropriate or not (a fundamental truth for writing any kind of diverse character).

Privilege-Check Your Other Characters

What goes for you the author also goes for the other characters in your novel. Unless they are family or close friends of a disabled person, they will have the typical uninformed normie background ('normie' is slang for a non-disabled person, and reflects their assumption that we aren't normal). Some people are so blind to disability that they don't see anything wrong with advising a disabled person that they would kill themselves in the disabled person's situation, or worse, advising the disabled person themselves to seek euthanasia. Others are eager to 'help', so eager to 'help' that they will do things that you have asked them not to, and be affronted if you are not grateful. I once had a colleague hurl himself across a stairwell in order to open a door for me. I didn't need help, he endangered me in doing it, he insisted that he would keep doing it when asked not to, because he insisted he had been taught that that was the polite thing to do for disabled people. Apparently my views as an actual disabled person didn't count. (And I'm definitely recycling this story into Emma's experiences!) The proper etiquette around these things is to ask the disabled person if they need a hand, and then let them tell you what needs doing. And there are those who will attack disabled people, whether physically, verbally, or managerially (I've faced all three), because there is some deep, twisted element of xenophobia in their character. Obviously not all characters will be so negative, but elements of these behaviours and beliefs are very widespread, with, for example, a large part of the UK population convinced disability benefit fraud is rampant and that we are all scroungers - it's actually the lowest fraud rate of any benefit, but try convincing Joe Public that. Introducing a disabled person into your cast of characters should force you to examine the attitude to disability of every character who interacts significantly with them.

Being Disabled is a Political State of Being

A consequence of normie attitudes towards disability is that disabled people have often had to become politicised through sheer self-defence. Pretty much a universal truth is that disabled people are still working through their own liberation struggle, trying to move towards society treating us as equal in just the same way that non-White, non-Christian and non-straight people have all had to seize their equality and force it on an unwilling world. Unfortunately we're probably 20 years behind the other liberation movements, and in many areas we're going backwards. The political climate towards disabled people is very negative in the UK, with the dominant narrative being that we're benefit scroungers, if not fakes and frauds, and from news reports I've seen it seems to be turning that way in Australia and perhaps the US (though complicated there by a wider and more entrenched antipathy towards social benefits). Your story and your character's experiences don't have to address that, there are many disabled people who never realise there is an active political movement out there, and disabled children who haven't grown into political activity yet, but it is out there, and so are the political drivers that have made us rise up against them.

It's also worth noting that the language of disability varies depending on country. As a British crip (a label we only allow amongst ourselves, that isn't universally accepted and that generally points towards a politically active viewpoint), I call myself a disabled person and talk about disablist discrimination, if I were American, then I would call myself a person with disabilities and talk about ableist discrimination. The differences aren't because we Brits missed out on the whole person-first language thing, it is because of widespread adoption by UK disabled activists of the Social Model of Disability, which defines disability as the discrimination we experience because of society's failure to adapt to our needs, which means when I declare myself as a disabled person, I'm doing so as a comment on my position in society. Other English-speaking countries vary in usage depending on whether the US or UK disability movements have had most influence, or use both depending on the individual.

Looking at the most generic disability terms, disability/disabled is acceptable anywhere, handicap/handicapped is acceptable in the US but not the UK, old-fashioned terms such as crippled and lame are heavily disliked, retard/retarded is universally loathed as a term of abuse and the cutesy differently abled, handicapable and the like generally have disabled people rolling their eyes in sheer disbelief at the cluelessness of people claiming to advocate for us.

Does He Take Sugar?

The meme which assumes disabled people are incapable of answering for themselves is so entrenched among the non-disabled that it was adopted as the title of one of the UK's early disability programmes. Even today I still see disabled people, particularly wheelchair users, regularly reporting instances in which the person, waitress, store clerk or whoever they are dealing with instead addresses themselves to a family member, a carer/personal assistant, or even a random passing stranger. That in many cases the disabled person is far more highly educated than the person they are dealing with just puts the assumption that disabled=mentally incapable into even harsher contrast. There's a variation on this in which the disabled person is addressed, but is offered completely inappropriate help. Deaf people being offered restaurant menus in braille, blind people being offered a wheelchair in airports, and wheelchair users being asked if they're really sure they can't walk up a couple of steps happen so often they've practically become clichés of disabled/non-disabled interactions.

How Am I? Ask Again in Five Minutes

Non-disabled people have a bizarre presumption that disability is unchanging, which is unfortunate as it often leads to them accusing disabled people of being fakes (about the worst thing you can say to a disabled person) when the disabled person does something today that they said they couldn't do yesterday. The reality is that even disabilities you would imagine are unchangeable may have distinct variations on a frequent basis, and for some of us our disabilities can vary from one moment to the next. If we take my hypermobility issues (a connective tissue disorder), minor sprains, even partial dislocations, are a normal part of moving around - I've got quite a mild case, for many of my bendy friends full-on dislocations of major joints are a daily occurrence - so my mobility can actually change between one step and the next. The same thing goes for pain levels, which can also vary in longer cycles of days, weeks, months at a time. Even an amputee, someone most people will see as having an unchanging disability, will need to deal with fluctuations in the precise size and shape of their stump as their weight and fitness varies, and both amputees and people with paralysis will need to be aware of, and deal with, potential skin-breakdown issues.

Inspiration Porn, It's Not Exactly Inspiring

Inspiration-Porn is disabled peoples' term for the kind of poster that shows someone with a very visible disability and then says 'What's your excuse?' or the like. It's not normally seen as a negative for disabled people by the non-disabled, but it undermines our equality in two distinct and opposite ways. The first praises us as outstanding and exceeding all reasonable expectations simply for getting out of bed in the morning, undermining any real achievements we might have made. I was once patted on the head by a local politician, I was 30+, working on cutting-edge aerospace projects, yet add a wheelchair to the equation and he thought it was appropriate to pat me on the head as though I was a child for being out with a friend on a Saturday. The second form is even more insidious, it raises disabled people like Paralympians up on a pedestal, and then uses them as a club to beat other disabled people with for not achieving as much. 

If you want to write a novel about disability for either of these reasons, please stop now. On the other hand, they're something that a disabled character may have to address, especially if they find someone trying to put them on a pedestal - that's something I have planned for Emma Shannon.

Disability is Expensive

Even with a relatively stable disability, disabled people will often face expenses that are significantly higher than non-disabled people imagine. High-end prosthetics can cost $50,000 and more, and need replacing every few years (much more frequently for growing kids). If the state does provide prosthetics as part of the medical system, then often that won't extend to the modern computer-controlled 'bionic' types that get all the TV coverage nowadays. Some disabled people have annual medication costs that might comfortably buy a small house. A powered wheelchair can easily exceed the sticker price of a small or even medium-sized car if it needs any sort of customisation, and an individually-fitted manual chair (essential for most full-time wheelies) will be dearer than many second-hand cars. Equally car adaptions can be very expensive - the only disability-specific adaption my car has is a steering knob, which only cost me a few pounds, but my driving license restricts me to automatics only, which generally rules out the smallest model in any manufacturer's range, and often enough the cheaper options of their next size up - needing an automatic added around 50% to the cost of the smallest practical car that addressed my needs. Add the need to carry and load a large wheelchair or other mobility equipment, and costs can shoot through the roof. Add specialist controls and you're talking thousands more. Similarly I don't have any physical adaptions to my house, but my heating is on year round, because anything under about 21C and my joints seize up, so my heating bills are significantly higher than would be expected and fuel poverty and needing to choose between heating and eating are far more common discussions than disabled people would like, or non-disabled people would imagine. 

For someone without a medically-stable disability, disability-related medical costs can quickly mount, even in countries where direct healthcare costs are taken care of. I know people who have to spend hundreds of pounds at a time in travel costs for hospital visits, because the specialist they need isn't local and their disability complicates their travel arrangements. If you consider that my record for hospital visits in one year is in the high twenties (even with a stable situation I've had ten so far this year), then the potential costs soon become apparent. If you aren't in a country where direct healthcare costs are borne by the state, then becoming disabled can be a short-cut to bankruptcy, and that's a reality your character will have to deal with, it's certainly a reality Emma will be facing in my story.

Striking a Balance

There is a balance to be drawn between illustrating how disability means differences in a character's life and prurient detail. For instance, Laura, the paraplegic protagonist in Graveyard Shift, my work-in-progress, is inevitably going to be using a catheter and other continence control techniques, and she even spends several scenes in the bathroom having major discussions with her BFF and fellow protagonist, but there's no need for me to detail precisely how she manages her continence, just as I wouldn't discuss the details of a non-disabled character using the toilet in a similar situation, unless it becomes significant to the plot (or I'm trying to do some audience education). There probably is a point in the story at which Laura has to temporarily switch from intermittent to indwelling catheterisation, but seeing as the physical incapacitation that would drive that is more than adequately discussed in other ways, that change in toileting isn't something I actually need to detail. Again this is somewhere that the input of an actual disabled person may be valuable.

Other Worlds, Other Times

Disability isn't simply a phenomenon of 20th Century Earth, it existed in the past, it will exist in the future, it will exist in alternate, secondary worlds. If you are writing in our own past, then you need to look at the historical record of how society has reacted to disability, and it is a rarely pretty tale. Our situation today, flawed though it may be, is many times better than it has been through most of history. The Spartans and many other civilizations exposed disabled infants on the hillsides, the Victorians locked us away in asylums, and we're still trying to close down the last vestiges of that phenomenon, while the Nazis tried to obliterate us in Aktion T4, the precursor to the Holocaust. But even the Nazi implementation of Eugenics was only the tip of an iceberg, Eugenics gained traction all over the developed world, with compulsory sterilization of disabled people happening from the USA (the Supreme Court famously ruling in Buck vs Bell that "Three generations of imbeciles are enough") to Sweden to Australia, and cases still crop up today.

The future raises further questions. Has disability liberation progressed? Has medical and prosthetic technology progressed? And has that progression led to societal pressures to accept a cure? One of the most famous SF works with a disability theme is Anne McCaffrey's The Ship Who Sang, in which a disabled baby, Helva, is locked away in a 'shell' and trained to become the living core of a spaceship. The novel was written in the '60s, so essentially predates the disability liberation movement, but for modern disabled people the portrayal of disability is deeply disturbing. For a start only the brightest disabled children get this treatment, for the rest it's implied they'll be killed; then there's the infantilisation, Helva's physical development is deliberately stunted to keep her at a convenient size, and last of all it's a literal embodiment of the disabled person being locked away in the attic, with Helva not just locked away in the shell, but then locked away a second time behind the control console of the spaceship she becomes. As an example of how not to do a disabled character in the future, The Ship Who Sang is difficult to beat.

A more recent example shows a similar tone-deafness towards the feelings of disabled people, in David Weber's Honor Harrington books the major plot arc that's been developing for nearly 20 books suddenly turns on the different ways that two civilizations approach medical ethics. The bad guys kill an autistic child (a clichéd idiot savant), because while her maths skills were up to scratch her autistic traits were too much of a nuisance, and then, to show how much better the good guys are, one of their leaders remarks how they had 'cured' autism centuries ago - cue the entire population of neurodiverse geeks beating their head against a wall at the sheer cluelessness of imposing a 'cure' on our fundamental self-identity.

For secondary worlds, worlds which are not ours, there is a freedom to develop how their societies interact with disability, but those interactions will have grown out of physical, social and economic drivers. In a subsistence economy, someone who isn't physically able to farm will be in a problematic situation, in a warlike society, someone who can't fight may find it difficult to gain respect, and so on. The freedom is there to shape reactions to disability all of your own, but they need to be believable within the society as a whole.

Pulling It All Together

Creating a disabled protagonist is much like creating any other character, but the reality of disabled life means that there is a much higher risk of scoring a critical failure on your audience's suspension of disbelief if you haven't done the right research and thought through the essential issues. Ultimately, the interaction of plot, world and character may be much more tightly coupled than in a work with a non-disabled protagonist. I hope this won't stop people from trying, we really do need diverse books in which realistic disabled characters take centre stage, especially books by disabled authors, but we also need those characters to reflect our reality as disabled people, not the reality non-disabled people imagine for us.

Closing Note

I'd like this to be a useful resource for anyone trying to create a disabled character, so if you can think of anything I haven't covered, and that isn't specific to a particular disability, or if you think I'm approaching something in the wrong way, then let me know in the comments and I'll see what I can do.

The One in Which I'm Told 'Don't Censor Me!'

I had a bizarre twitter conversation with a left-wing writer last night which started when they put up a tweet which attacked Farage and UKIP, which I'd normally be all in favour of, but did it by way of likening him to 'the nut on the bus'. It wasn't the first time they had used a disablist term as a negative, so I tweeted

David Gillon @WTBDavidG

@Name_Redacted Do wish you wouldn't use that kind of disablist stereotyping.

Which I'd have been happy to leave at that. However they then DM'd me, protesting it was just a joke about Farage, 'But feel free to unfollow me.'

Sidebar: As the conversation they initiated was DMs, I'm going to keep their name out of this, but seeing as it ended up accusing me of attempted censorship for protesting disablist language, I feel perfectly entitled to use it to explore the issues around this. I'll paraphrase their replies, but use mine mostly verbatim.

I replied:

David Gillon @WTBDavidG

If I unfollow, how does that help me change the way society sees disability? To be honest, kind of language I'd expect from Farage.

Their reply told me I needed to keep things in context, that it was just a joke and not a PhD thesis. So I tried to explain the context for disabled people, hoping to get them to understand that what is a throwaway issue for them is nothing of the sort for us.

David Gillon @WTBDavidG

Context for me is around a dozen instances of on-street violence related to my disability. Difficult to see the funny side.

The reply to that was to tell me that Twitter isn't something I should feel I should censor and that things that happened to me doesn't give me the right to censor (remember, I only told them I wished they wouldn't use disablist terminology).

To try and illustrate the issue with a parallel I asked:

David Gillon @WTBDavidG

Would you give Farage a pass if he said 'thieving Roma on a bus'?

Possibly that was escalatory, but by this time I was feeling that there was a definite issue to paint me as the wrongdoer here. Their reply was to say it wasn't about giving them a pass and to challenge me as to whether I would say the same on a bus if it wasn't directed at me. I can't speak to the bus situation, but I know I do it regularly online, particularly if attacks are being directed at someone I know.

The next post, following straight on from the previous one, told me that the law limited what they said and that they didn't need an editor to censor them. I replied

David Gillon @WTBDavidG

I wasn't demanding the right to censor you, I was suggesting you consider the meaning of what you were saying, hoping you would self-censor

They replied that their words were chosen carefully, sometimes provocative, and that I should block them, but not deliver a lecture, and that asking someone to consider self-censoring was still a weak form of censorship.

And then they unfollowed me, which was unfortunate as I really wanted to bring in reclaiming the language and the N-word to try and help them understand the issue.

In many respects this is a storm in a teacup, but it directly parallels another twitter conversation I had a few months ago in which someone, again professing to be left-wing and to stand against anything discriminatory, used the R-word. I asked them not to do it, and rather than say 'Sorry, I didn't realise it was so offensive to disabled people,' he vehemently denied that there was anything wrong with saying it, an insistence that continued even when linked to multiple articles on the subject. I've seen similar reactions elsewhere (not initiated by me) that insist disabled people don't have the right to find disablist language offensive.

And, finally, here's my point. We know disability discrimination isn't as well understood by society as other forms of discrimination, but the reclamation of hate speech should be well known, at least among politically active leftists, through the example of the US Civil Rights Movement and the reclamation of the N-word. Yet try and extend the same principles to disablist terms, whether outright use of the R-word, or disparaging references to the 'nut on the bus', and some leftists will treat it as a personal attack, or portray it as censorship. If even leftists won't accept our right to the same accomodations in language as People of Colour, then we may have made even less progress in our fight for equality than we had hoped.

• 
  

I Am a Crip, and I'm #DisabilityConfident of that

A disability consultant just put out the following two tweets under the #disabilityconfident hashtag

burdus access @BurdusAccess

Disabled people - lose the 'c' word ('crip')! It doesn't empower, it undermines & reinforces neg stereotype. #noCword #disabilityconfident

And

burdus access @BurdusAccess

'Crip' is as damaging to disability equality as the 'n' word is to racial equality. Language is the dress of thought! #disabilityconfident

I'm fully aware that 'Crip' is a controversial term for many disabled people, I fully accept people's right to feel uncomfortable with it, and its use, but when they start trying to tell us what we can and can't call ourselves, then I have a problem with them. I've self-identified as a Crip for the last decade, basically since my time on the BBC's Ouch bulletin board, which was the political awakening for many of today's online disability activists. By calling myself a Crip I put myself in the face of those who would denigrate us and tell them that they can hurl disability epithets all they like, because I'm proud to claim those terms for my own. Equally, calling myself a Crip is a form of group self-identity. It aligns me with every other disabled person who confronts those who would put us down, and turns the language of hate into the language of our resistance. So, yes, calling myself a Crip is part of who I am, part of my identity, and my identity is important to me, because denying our ability to self-identify is historically part of the infantilisation of disabled people that kept us as a 'pitied', 'childlike' minority for all but the last 50 years of our history.

So when someone in a self-appointed position tells me how I'm allowed to self-identify, I tend not to see that as remotely #DisabilityConfident (yes, it's one of those 'disability consultants'), and yes, I damn well have a problem with the arrogance of it.

It isn't even particularly well informed criticism, as we see with the statement 'is as damaging to disability equality as the 'n' word is to racial equality'. The reclamation of the N-word (I can't use it, I'm not entitled), is a huge part of the reclamation of Afro-American (in particular) identity from the forces of segregation and hate. The reclamation of the N-word, and the reclamation of language in general has been the subject of considerable academic research, which you can find in papers such as Linguistic Disarmament: A Philosophical Analysis Of Hate Speech And Reclamation Efforts, Not all are in favour by any means, but we are dealing with the assertion of rights by a victimised minority and we oppose or criticise that at our peril.

As 'Wobblin Wilma' notes in this Ouch thread there is an essay by Nancy Mair 'On Being a Cripple', which articulates a slightly different pro-Crip position and around which there has been considerable commentary, as here, but I actually prefer Wilma's own analysis which notes that the aggressively negative use of 'cripple' is a comparatively recent development that is ripe for reclamation. Or there's Chris Page in this thread saying '"Crip" is most used by confident Disabled people who refuse to be judged by outdated stereotypes of the benign, subservient disabled person.' which I absolutely agree with. But using the term doesn't imply we should use it to all and sundry, as is discussed in this thread. I'm in those threads as DavidG, but my position has moved on since the earlier posts and I've gone from being neutral around Crip to overwhelmingly positive about it - there are far too many people who oppose us and will hurl our disability in our faces as an epithet for us not to reclaim their language of hate. Having said that, sometimes I got it right: 'When someone else says 'Crip' they focus on our disabilities and what they imagine we can't do, when we say 'Crip' we parody their beliefs and emphasise our belief in our rights as an oppressed minority. By pre-empting their usage we remove the word's power over us. We turn insult into shared identity and experience.' And 'I'd say that, for those of us who choose to use it, it recognises our individual political identity. I loathe the term as a physical descriptor, but I love it as a political one. It says that I recognise the disablist society that discriminates against me and that I'm not going to take it.'

The offending tweets noted 'Language is the dress of thought!', which is absolutely true, language shapes the way we think, and that is what makes reclaiming language so important. Before the Civil Rights Movement, the N-word was hate speech, a term of utter disdain, reminding Afro-Americans that they might no longer be slaves, but that they were still regarded as barely second class citizens by the white power structures of the Southern States. But once the Civil Rights Movement took hold, once the language of hate was reclaimed, then the N-word became something different, it became an expression of identity, an expression of equality, and a statement that power was no longer something wielded against the Afro-American community, but something wielded by them.

If you try to stop me asserting my chosen identity as a disabled person, then all you're doing is declaring yourself as part of the problem, not part of the solution. That says it is time to take a look in the mirror and decide whether you stand with us, or against us.

So, yeah, I'm a Crip, deal with it.

Disability Confident and the Elephant in the Corner

Blogging against Disablism Day (#BADD2014) was back on the 1st, so I'm more than a little late, but I struggled to settle on a theme until interactions on the #DisabilityConfident twitter hashtag focussed me back on to disablism in employment. And by the way, do follow the #BADD2014 link for one of the most important collections of disability essays you'll read all year.

For more background on Disability Confident, see my earlier blog So What's Wrong With Disability Confident.

When we come to disability employment, it's clear that the main issue limiting disabled people achieving equality in the workforce is open disablism (ableism for those in the States). Either we can't get through the recruitment process because our applications get inexplicably filed in the wastebasket when we mention our disabilities, or we don't mention them and they get inexplicably filed in the wastebasket when we turn up for interview with crutches, a wheelchair, a white cane, whatever. On the off-chance we get through recruitment, which for many of us only happens because we didn't happen to be disabled at the time, we then have to navigate the process of explaining to management that we now need reasonable adjustments, which can far too often trigger a full blown crusade to force us out of the company, and god forbid your disability changes and you need to change your adjustments - 'Please sir, I want some more.' Even if you get the adjustments in place, you may find yourself facing jealousy from your peers - 'why should she get out of stacking shelves just because she has a wheelchair', or transferred into a post where the new manager takes against you - 'I believe anyone who becomes disabled should be medically retired' to quote one of my annual appraisals. And when it comes to taking on even a small company to enforce your rights, the company usually has better resources, go up against a multinational and you can find yourself facing hot and cold running lawyers, and even if you win may find yourself subject to a gagging clause which means you can't discuss the censored .

So when it comes to staging a major two year campaign to challenge the lack of equality for disabled people in the workplace, you would have thought that challenging open disablism would have been at the forefront of the campaign. Unfortunately Disability Confident is a Department of Work And Pensions campaign, and DWP thinks disability is our fault for not trying hard enough (sadly I'm not joking), and god forbid they might even dare to contemplate enforcing the Equality Act ("I am not somebody who would want to tell somebody what they have to do. We have to work with business.” Esther McVey, then Minister for(?!) Disabled People). Instead Disability Confident has focussed on the low hanging fruit of companies who are willing to have disabled employees, but aren't very good at it. Unfortunately Disability Confident isn't very good at it either. Scope have basically done a better job in the first week of their 'End the Awkward' campaign, which isn't even an employment focussed campaign, than Disability Confident has managed in a year. Almost half-way through Disability Confident's two year campaign and we're still seeing the same 'how inspiring' tweets from the people attending their events.

One thing that disturbs me deeply about Disability Confident is the number of disability consultants willing to get up on stage and say how wonderful it is. Forget the campaign's figurehead, Simon Weston, he's there because he's a mate of Mike Penning, the current Minister for Disabled People, and doubtless picked as someone well known for being disabled who company directors would probably quite like to have their picture taken with (and even better, he's not a political crip). Focus rather on the disability consultants, the people who deal with the issues of employment and disability on a day by day basis. If they are disability consultants, then pretty much by definition they need to know about things like inspiration-porn, and the real nature of the employment market for disabled people, they can't do their job if they don't. All the time they're singing the praises of Iain Duncan Smith for his crusade against the inherent idleness of those damned, faking crips, they have to know just how bad Disability Confident is, and that the elephant in the corner is sitting there, staring at them, and wondering when they are going to get around to dealing with the real issue - employer disablism. And what goes for the elephant in the corner also goes for us out here, the actual disabled people, the ones who want jobs, or who have jobs and need adjustments, or who had jobs and lost them for no reason other than our disability and the disablism of our employers. Like it or not, the disability consultants taking part in Disability Confident are representing us, and they're doing a piss-poor job of it.

DWP don't want to challenge disablism, the disability consultants don't want to challenge DWP (that would be biting the hand that pays their contracting fees), and our voice, the voice that says 'I want the same chance to work as anyone else', goes unheard. For disabled people, Disability Confident is worse than a failure, worse than nothing, it's the disability equivalent of Uncle Tom's Cabin, actively designed to make employers feel good about themselves and think they need do nothing more to make us equal than hold up a handful of inspiring (sic) examples.

I'm never going to be a saintly Uncle Tom, held up as an example of how a good little crip should behave, I'm cut far more from Uppity Crip cloth, and when I see an elephant in the corner, I'm going to shout it to the hilltops, and get Jumbo to trumpet it alongside me. Disability Confident is not just bad, it's dangerous, it's explicitly designed to reinforce the status quo, rather than persuade employers to live up to their legal obligations to treat disabled people as equal to any other worker. Employers have had 70 years to do that, since the Disabled Persons (Employment) Act 1944, if they haven't done it yet, they aren't going to do it without being forced, no matter what Esther McVey or Mike Penning might bleat. And if a programme is designed to reinforce a disablist reality, then that programme is by definition itself disablist.

Either we challenge disablism in employment, or we're on its side. Disability Confident has picked its side, it is there to reinforce the status quo of disablist employers having nothing to fear. The elephant in the corner is sitting there at every Disability Confident event, forced into the corner as the interests of disabled people always are, and waiting for one of the invited disability consultants to finally find the guts to look it in the eye and say: 'Oh, sod this, let's talk about the real problem.'

It's about ability, AND disability

A message that keeps being recycled at every Disability Confident event (See 'So What's Wrong with Disability Confident?' here) is that 'It's about ability, not disability', this is the kind of half-cocked phrase that sounds like a good thing from the non-disability perspective, but promises to be a nightmare for actual disabled people. It is right to a very limited degree, you shouldn't be looking at my disability during recruitment, in fact you are legally obligated under the Equality Act 2010 not to consider my disability until after you offer me a job. But once we pass that stage it is very much about both my ability and my disability, because my disability brings obligations and entitlements. I, and every other disabled person, need to know that the particular needs we have around our disabilities, whether that be an individually fitted chair, the ability to take a break as needed, or whatever, will be addressed without negative consequences, and our rights to these 'reasonable adjustments' are enshrined in the Equality Act. Unless I know these needs are addressed, I can't have any confidence in you as an employer; and in any case making reasonable adjustments is good business sense, it allows your workforce to perform at their peak. But 'It's about ability, not disability', tells companies that if they focus on my disability, at any time, then they are doing it wrong. The difference is only a word, but 'It's about ability, and disability', together with a careful explanation of obligations under the law, would transform the message of Disability Confident into something far more useful.

(This is broken out from my larger essay 'So What's Wrong with Disability Confident?' for ease in pointing it out to the people who come out of Disability Confident events twittering that 'It's about ability, not disability' that no matter how much DWP may be pushing that tag line, it actually isn't remotely helpful to disabled people. It isn't their fault they're being misled, but someone has to tell them, and seeing as 'Nothing for us, Without us' is anathema to the DWP we're forced to do it ourselves.)

So What's Wrong With Disability Confident?

Disability Confident is a DWP initiative, running from July 2013 to July 2015, which is intended to persuade employers to take on more disabled people as employees. So how come disabled people are campaigning against it? And why did Disabled People Against the Cuts invade their latest event?

Inspiration Porn

I shouldn't have to explain why Inspiration Porn is a bad thing, but apparently I do, and not just to the man in the street who doesn't have a background in disability politics, but to supposedly prominent disabled people who are interfacing with government in our name and should know this stuff inside out. Just today I had a disability consultant tell me that by raising issues around Disability Confident and Inspiration Porn I was 'do(ing) more damage than good' (which instantly made me sit down to write this blog).

Er, Inspiration Porn, what is it? If you really don't know, or if you're a disability consultant and only think you know, then read this: We're Not Here For Your Inspiration (by Stella Young), or this: Explaining Inspiration Porn to Non-Disabled People (by Cara Liebowitz) or this Disabled People Are Not Your Inspiration (by s.e.smith). Actually all three are excellent articles written by disabled people who know exactly what they are talking about, so read them anyway.

The specific problem with Disability Confident and Inspiration Porn is that it institutionalises the idea that disabled people must somehow be 'inspiring' to be considered a success, or even just adequate. This manifests in two different, and opposite, forms. In the first form, we're objectified as inspiring just for getting out of the house or other normal activities; this reduces us to Tiny-Tim like symbolism, with actual achievement discounted. In the opposite form, every disabled person is expected to have the same abilities as a Paralympian, and judged a failure if they don't achieve equal prominence, this isn't simply a theoretical threat, there really are people out there saying 'if Paralympians can do that, then clearly no disabled person can claim to be unable to work", or in a common variant 'Well, if Stephen Hawking can work...'. This whole area of disablism is closely related to the Tory narrative around disability, which says that a disabled person only has worth if they are holding down a job, and classifies us as scroungers, frauds and skivers if we cannot, which perhaps explains why Disability Confident is so closely bound to Inspiration Porn. The overall effect is to denormalise disability; we are either successes just for breathing, or failures for not achieving multiple Paralympic golds alongside a career that's headed for the business stratosphere; and all of this simply pushes true, Social Model, equality for disabled people, where disability is just another aspect of 'normal', further and further away.

Inspiration Porn problems with Disability Confident have existed since its launch in June 2013; if you look at the contemporaneous 'Fulfilling Potential - Making it Happen' brochure which outlines the government's entire disability policy, Esther 'they get better' McVey, then Minister for Disabled People, managed to use the i-word ('inspiring', and variations, including 'incredible and inspiring') four times in her two page introduction. Arguably this is a continuation of their previous campaign 'Role Models', which oddly enough focused on disabled people DWP believed to be 'inspiring role' models (yes, I complained about that too). The actual Disability Confident launch event only confirmed what we had feared, with Esther McVey announcing, when challenged on enforcing disability enforcement law “I am not somebody who would want to tell somebody what they have to do. We have to work with business.” While Disability News Service reported Government’s softly-softly jobs conference sparks anger with quotes from a range of disabled people, some in the hall, some commenting over social media (including me), Mik Scarlet, who had received an invitation to the launch, reported on the first-hand experience at Huffington Post, calling it The End of Solidarity? and reporting major problems with not just "the ridiculous over use of the word "inspiring" every time a disabled person either spoke or was mentioned," but that "the stage was filled with five disabled people who in turn told the audience the "inspiring story of their disability" then "passed a negative judgement on any disabled person who was not in work". Add to that repeated instances of disabled people, many of them supposed disability access consultants who should know better, advocating a Hierarchy of Disability and Mik tells us he "escaped the conference early and drowned my sorrows over a coffee"

Nor was this some opening-day miscommunication. Despite protests from disabled people, every Disability Confident event has seen similar issues, with messages all through the day about how inspiring it all is and with CEOs of major employers coming away tweeting about how 'inspiring' we all are, including the keynote speaker at the latest event (and he was still doing it a week later); messages which were also repeated by many people who should know better. Indeed some of the companies and minor charities DWP has chosen to work with in Disability Confident actually have inspiration porn built into their very names, such as recruiters 'The Clear Company' who tweet under the account name 'InspireToHire'.

Disability Confident's own guide for businesses actually talks about the need to address unhelpful attitudes towards disability in the workplace, but the entire initiative then proceeds to positively enshrine inspiration-porn as the core of a strategy for supposedly improving attitudes towards disability. If you build your structure of improvement on a false premise, that inspiration porn is good for disabled people, then the whole enterprise is doomed to fail, or worse, further entrench disablist attitudes - in this case that any disabled person who isn't 'inspiring' has somehow failed, and disabled people have been trying to get that message across for almost a year now.

It's about ability, not disability (sic)

Nor is pure Inspiration Porn the only issue, a message that keeps being recycled at every Disability Confident event is that 'It's about ability, not disability', this is the kind of half-cocked phrase that sounds like a good thing from the non-disability perspective, but promises to be a nightmare for actual disabled people. It is right to a very limited degree, you shouldn't be looking at my disability during recruitment, in fact you are legally obligated under the Equality Act 2010 not to consider my disability until after you offer me a job. But once we pass that stage it is very much about both my ability and my disability, because my disability brings obligations and entitlements. I, and every other disabled person, need to know that the particular needs we have around our disabilities, whether that be an individually fitted chair, the ability to take a break as needed, or whatever, will be addressed without negative consequences, and our rights to these  'reasonable adjustments' are enshrined in the Equality Act. Unless I know these needs are addressed, I can't have any confidence in you as an employer; and in any case making reasonable adjustments is good business sense, it allows your workforce to perform at their peak. But 'It's about ability, not disability', tells companies that if they focus on my disability, at any time, then they are doing it wrong. The difference is only a word, but  'It's about ability, and disability', together with a careful explanation of obligations under the law, would transform the message of Disability Confident into something far more useful.

How Do We Fix This? 

As I discussed in Disability Employment : Time to Confront the Bigotry? I think the entire approach of the DWP to Disability Employment is wrong, and very possibly deliberately wrong. DWP is not an organisation with a healthy view of disability, holding to a twisted version of the BioPsychoSocial Model of Disability which holds disabled people at fault for wilfully not recovering from their disabilities; meanwhile its current lords and masters, IDS and his coterie, are beholden to the Tory party dogma of meeting the demands of business first, last and always. The real problem disabled people face is active disability discrimination both in the recruitment market, and in the workplace, sometimes from colleagues at the same level, but frequently from management, and often not just first or second line managers, but very senior managers in companies which are household names. This entrenched disablism has survived 50 years of pre-Disability Discrimination Act employment quotas for 'Registered Disabled' people (a term many companies seem to believe still exists) and a generation of post-DDA discrimination law without shifting in its refusal to treat disabled people as equal. We won't fix this by telling disablist employers to be nice to us - the approach Disability Confident has adopted - it will take a concerted crack-down on employers and a few salutary convictions for breaches of the Equality Act to even start to have a true impact.

Disability Confident is right to point out the ability of disabled people to employers, but it needs to be a message that covers the full range of ability, so that disabled people aren't competing against a false expectation that demands we be better than our non-disabled colleagues. And the message needs to be taken to its logical conclusions, pointing out that equal employment would mean two million more disabled people having employment isn't much use when there are only 600,000 vacancies out there, but the logical conclusion from this, that anything up to 2 million disabled people have been denied work due to workplace disablism, that's a headline to grab attention and set people thinking.

Teaching employers to be confident enough around disabled people that we no longer run into exclamations like 'I never thought about a disabled person applying' (yes, someone really said that to me, at a company regarded as avant garde in employee relations) has a certain value, but only if it is followed through with all the supporting measures to help employers understand that disabled people exist within a legal framework that compels them to simultaneously recognise our disabilities, treat us as individuals (because recognising our individual disabilities and their reasonable adjustments is required in law), and treat us as equal to everyone else. If they won't agree to treat us within the law, then a) Disability Confident is wasted on them, and b) why aren't we prosecuting them already?

For me to be confident in an employer I need to know that they will understand the needs of my disability, and that they understand the legal rights to measures to ensure my equality that being disabled confers on me. If Disability Confident can't deliver that, and as it stands it can't, then it is worthless to me.

The DPAC Protests

I must admit I was initially annoyed at the DPAC protests at the last Disability Confident event, both in the hall and on Twitter; in all my opposition to Disability Confident I had tried to keep the focus exclusively on how to improve disability employment - trying to do the job that Disability Confident was failing at - and drawing a distinct line between that and my campaigning work on Welfare Reform, because I oppose the aim and methods of Welfare Reform, but only the methods of Disability Confident, not the (professed) aim. And I think that distinction got lost in the online 'twitterstorm', and in the points made by DPAC's speaker in the hall. Focusing the twitterstorm was always going to be difficult, so I'll give DPAC a partial bye on that (only a partial one though, the suggested tweets here drift all over the Welfare Reform map, often having little direct relevance to disability employment). I still think that the in-hall approach was wrong, attacking the employers simply for being bankers or 'having their snouts in the trough' was only going to make them close ranks and ignore what was said, and it wasn't challenging them on their records of disability employment, which was surely the reason for the protest in the first place. Challenging them on why they still haven't implemented the Disability Discrimination Act 1995 a full generation on, and why we needed Disability Confident at all, that was the way to both force them into thinking about the real problem of disability equality, and disability discrimination, and to opening a dialogue with them, and without that dialogue, we will not move forward.

But my annoyance faded considerably when I read the DPAC press release on the action, Disability Confident roadshow fails to address real barriers to employment for Deaf and disabled people which really is an excellent piece of work, one of the best I've seen in five years of campaigning. Amongst other things it made me realise for the first time that the statistic that disabled people remain in a job longer, often trotted out to emphasise how attractive we should be to employers, is really a symbol of our oppression, we stay longer because it is so much more difficult for us to move on, and that artificially stunts the careers of disabled people. There are similarly excellent points around Access to Work, segregated and inclusive employment, education - really, just read it.

And ultimately what distressed me most about the in-hall action wasn't disabled people standing up and trying to make our voices heard, but that it was other disabled people trying to shut those voices up. Did no one have the sense to say 'Okay, you're here now, and clearly not all disabled people agree with the approach we're taking, we'll give you 10 minutes to make your point and then we'll break for lunch and let everyone discuss it'. Are all the disability consultants, recruiters, and whatever really so thoroughly in DWP's pocket that all they can think about is shutting down dissent and trying to ensure everyone stays on message...

... like good little crips.

Conclusions

Disability Confident is broken, it won't fix the problem it was set up to address. DWP have no interest in fixing it, because it is broken in a way that serves Tory political interests. Disabled people, on the other hand, may be able to make Disability Confident work for us, and we do that by policing the #DisabilityConfident tweetstream. If an employer tweets about being inspired, tweet them a link to one of the Inspiration Porn articles above. If an employer tweets 'It's about ability, not disability', point out that ignoring your disability isn't a sign of their disability confidence, or that you need them to recognise both to be confident in them. And remember, to win we need these people to come over to our side of the argument, so keep it civil. If a disability consultant, or a recruiter, or a charity, or any of the other DWP hangers-on say something you wouldn't expect to hear from another disabled person, most especially if they try to shut down debate by telling you that you are damaging disability equality, as I had happen to me this afternoon, then challenge them on it.

Why Wanting a Better Care.Data is not Luddite

A piece at The Conversation makes the claim that opposing Care.Data and other elements of NHS digitisation is Luddite. Now seeing as many of the people raising issues with Care.Data are either computer types or research scientists this seems a particularly odd claim, but I thought it was worth replying to it with the reasons I choose to raise issues with Care.Data,which is a very different thing from opposing it outright. I initially put those reasons in the comments to the article, but they're worth repeating here in their own right.

Care.Data has the potential to be massively useful, I notice several research projects with immediate relevance to friends and acquaintances just in a quick skim through the Register of Approved Data Releases published on 3rd April, I support the principle aim of Care.Data of accessing mass data in order to improve clinical care through research, yet I continue to have significant problems with the proposed implementation, to the point that I advocate people opting out if those problems are not addressed. I phrase my opposition to the current state of Care.Data around four issues: one a principle of medical ethics, one a principle of good science, the third based on personal experience of issues around disability and the fourth a concern so widespread that candidates will be running on that platform at the next General Election.

1) Medical ethics: Informed Consent is the basis of all medical treatment, HSCIC has attempted to avoid patient consent at every stage of the Care.Data process. It was only the insistence of the Information Commissioner's Office that has seen HSCIC make any attempt at patient contact or provide an opt-out at all, and discussion of these, by only mentioning the advantages of Care.Data and not the risks, has been patently inadequate. The Health Select Committee made their opinion of HSCIC's performance so far abundantly clear. Yet even the 3rd April publication of the Register of Approved Data Releases, a month after the shortcomings of their approach were made clear to HSCIC, only discusses the positive aspects of data release with no discussion of the risk to patient confidentiality, making it clear that it is intentional, and continuing, HSCIC policy to actively avoid discussion of these risks, rather than simply incompetence.

2) Good science: Risk analysis is a principle of good science, good systems engineering and good management, HSCIC has fallen clearly short on all fronts. It is abundantly clear that HSCIC does not want to discuss the risk of re-identification, whether on an individual or mass basis, because that would take Amber, pseudonymized, data back under the remit of the Data Protection Act, compromising their entire business model. Good risk management does not sweep existential risks under the carpet, it puts them at the front of management discussions and develops a plan to address them. Unfortunately the ICO response here has also been somewhat lacking, although I suppose it is possible that they may be engaged in a particularly strict reading of the Data Protection Act that believes a threat to re-identify pseudonymous data is only their concern once it has actually happened.

3) Disability issues: The issue of stigma around disability and illness is partially addressed by Care.Data in the proposal to exclude HIV and STD status, however the stigma issues around disability are much wider (far wider than the non-disabled population is generally aware), particularly around mental health, yet when the issue was raised at the Health Select Committee hearing junior health minister Dr Dan Poulter dismissed it with the words 'That's just daft'. Just daft to him, perhaps, but many disabled people (myself included) have had careers destroyed by the stigma around disability, and have faced hostile reactions from casual acquaintances and even just those we pass in the street. Worries around the risks of re-identification are very real, for many disabled people having a career depends on concealing the existence of some or all of the facets of their disabilities, Care.Data potentially compromises on a mass basis our ability to choose whether or not to disclose disability.

Equally we know that the Department of Work and Pensions have already made at least one proposal to access confidential medical data (a request for access to the Hospital Episode Statistics database at the centre of the current furore was turned down), at least two more attempts are in front of the Work and Pensions Select Committee at the moment (delivered at arms length by a company created under a DWP pilot), both of which appear to advocate access to GP patient records, in one case with the apparent intent of enforcing treatment as a condition of benefit receipt, together with further proposals for data-sharing with DWP under the general government-wide big-data initiative. Disabled people already have a deeply distrustful relationship with DWP due to the Department openly following a model of disability that faults disabled people if they do not recover from their disability within a year and due to it's shoot first, ask questions later model of benefit fraud investigation. For many people with mental health issues further intrusion by DWP into the doctor-patient relationship would make it difficult if not impossible to continue to access that service. I have already seen a disabled person state that they have concealed medical information from their GP due to fears of Care.Data leading to it being revealed.

The potential compromise of the trust between GP and patient extends into other areas, I have seen a convincing argument that patients being able to view their medical records will compromise the ability of domestic violence victims to be open with their GP as their abuser will potentially be able to police what was discussed by forcing them to provide access to their records. Similar privacy and breakdown of trust issues have been raised around teen pregnancies. These are very real concerns, and simply are not being addressed under the current model of Care.Data.

4) NHS Privatisation: It is very clear that many of the companies shown to be in receipt of patient data in the Register of Approved Data Releases are principally interested in the privatisation potential. Support of the NHS as a public, free at the point of delivery medical system is a principle of British society, and a wide range of the population feel that it is under threat, with the NHA Party proposing to run candidates on a pro-NHS platform at the next election. Release of Care.Data in pursuit of improved clinical research is one thing, release of Care.Data to the sharks circling the NHS is, for many of us, something else entirely.

Luddism? I don't think so.