Wednesday, 30 July 2014

DRUKing the Issue. DR-UK, Inclusion, Demonisation and Barriers


A new piece from Disability Rights UK outlines the position they took when speaking from the floor during the Fabian Womens Network event on disability and barriers.

 Frankly I'm stunned by this piece. It declares that DR-UK doesn't want to talk about inclusion or demonisation, because those are passive and don't show our (Thatcherite) contribution to society. Surely just a moment of analysis would have shown that a major element in the discounting of our contribution to society is the overwhelming demonisation as lazy scroungers that we face in the press? It is quite literally impossible to demonstrate 'our contribution to society' without simultaneously challenging that demonisation. Turning to inclusion, 'our contribution to society' is surely dependent on our actually being able to be part of that society! Unless we fight the battle for inclusion, and the fact is that we are fighting the battle for those whose need for inclusion is absolute, because they cannot survive without it and the support implicit in that inclusion, then we can never claim to be an inclusive movement, because we will have sold those who need our support most down the river.

By trying to frame the debate in terms of 'our contribution to society' DR-UK are acquiescing to the demands of IDS, DWP and the Coalition en-masse that disabled people must demonstrate that they are worthy of being considered 'hard working people', or be justifiably condemned as lazy, idle, faking scroungers. It's as if DR-UK had looked at 'Nothing For Us, Without Us' and said, 'ooh, Iain won't like that, better find something he will like.'

How on earth can a disability rights organisation be resistant to talking about barriers, the one constant in our experience of disability? The author dismisses barriers by saying 'Look at the Maginot Line'. If he was more of a military historian he would realise the Maginot Line rendered the entire Franco-German border inaccessible, forcing Germany to sneak in through the Belgian back door - in other words it is actually the perfect example of the half-cocked, add-on, make-do-and-mend access provision that forces us round the back to the servants' entrance on the rare occasion there's even that much thought given to allowing us to get inside. His other example actually enshrines the existence of barriers by saying 'if something is inaccessible, let's not challenge that, lets see if we can find a way round to the servant's entrance'. Barriers are there, they're real, and they stop disabled people from achieving more than a fraction of what they otherwise could. For a disability organisation, particularly DR-UK, with its self-appointed claim to represent us all, to claim that challenging barriers is negative simply beggars belief. In fact with their stated determination to focus on 'our contribution to society' the idea of not challenging barriers is even more ludicrous, because, unless we challenge the barriers we face, that 'contribution to society' will be forever compromised.

Disturbingly the author also adopts the divisive position that as disabled people we can be divided into those of us with huge support/inclusion issues and those of us with little to no support/inclusion issues. The truth is, of course, that there is a whole spectrum of levels of exclusion faced by disabled people, spread across multiple areas of disability, access and support issues such as independent living, physical access, online access, workplace discrimination, discrimination in the street, educational provision and so on. Each of us has an individual position on that spectrum of exclusion, but the overwhelming majority of us are somewhere in the middle, facing significant exclusionary barriers in one or more aspects of our daily lives as disabled people.

Equally disturbing, and clearly dangerous, is the likening of the experience of people whose disability has perceived lower levels of exclusion to the experience of people who are temporarily ill with the flu. The author attempts to justify this analogy by pointing out the difference between long-term and short-term needs, but given an ongoing DWP strategy of obfuscating the difference between short-term illness and long term sickness/disability in order to justify benefit cuts it is breathtakingly reckless for DR-UK to adopt the same strategy of likening the two.

The author states he is driven to these positions by the danger that "disabled people" is not understood to include "the many people who live with pain, fatigue, severe confusion, depression, the most significant learning disabilities and autism and also other challenges from homelessness to alcohol or drug problems." Speaking as someone living with pain, fatigue and neurodiversity, not in my name! If people don't understand the full range of disability, then that is a problem of inclusion, and refusing to address inclusion will not fix it. Only by getting out there into the streets and into Parliament and talking about the sheer inclusive breadth of disability and the barriers we face will we manage to make any progress at all.

Ultimately this DR-UK piece reminds me forcibly of DWP's Disability Confident scheme, which purports to address workplace disablism by reframing it as employers not understanding disability and therefore never actually gets around to challenging workplace disablism. DR-UK know that we face huge barriers to participation in society, and huge cuts to the already fatally strained care/support budget through the closure of ILF and the slashing of council budgets, but rather than get their hands dirty fighting in the trenches like the rest of us, they want to reframe the problem by showing what good little crips we are. Again, not in my name!

If DR-UK want to represent us all, then surely it might be an idea to start by listening to what we want them to say - 'Nothing for us, without us', remember? and I'm fairly sure what we want them to say is anything but the policies outlined here.

Tuesday, 22 July 2014

Opposing the Right To Kill Us Bill

Lord Falconer's Right To Die Bill (I prefer the more accurate Right to Kill Us) was debated in the Lords on Friday, and disabled people were out in force as part of the Not Dead Yet campaign against the bill, which seemed to surprise many non-disabled people.

That our opposition to a bill undermining our right to live is a surprise to many non-disabled people is not, unfortunately, surprising to us, but it is an ample illustration of why society is not mature enough in its attitude to disability for us to sleep soundly with a Right to Kill Us law approaching the Statute Book.

Just by coincidence on Friday I also came across this BBC article: A Point of View: Happiness and disability which reflects on non-disabled society's inability to comprehend that people can be simultaneously disabled and happy (and indeed happy to be disabled, I know I'm happier and a better person for the disability experience). The article gives it a name, the Disability Paradox, though I think the Normie Paradox fits better, it is after all the normie populace holding paradoxical views in the face of our evidence. And that's what makes putting the Right to Kill Us into their hands so dangerous. Normie society thinks that being disabled is a literal fate worse than death - just think of the phrase 'I'd rather be dead than in a wheelchair' - and is so convinced of that fact they don't hear our message when we tell them otherwise, our personal experience is written off because it doesn't fit their worldview. We see a similar phenomenon at work when polls show that non-disabled society as a whole believes that the rate of disability benefit fraud is 27%, not the actual 0.7%. Normies are predisposed to believe the worst of disability, because they have been brought up to believe that disability is intolerable and somehow shameful - I made the transition to disabled as an adult, so when it comes to Normie attitudes, been there, done that, had to fight my way out the other side.

This society-wide delusion about disability makes a Right to Kill Us bill doubly dangerous. Not only are people with acquired disability pre-programmed to consider their situation intolerable, making a neutral attitude towards their disability something they have to struggle to achieve, but, worse, non-disabled people are then pre-programmed to disregard what we say about how we feel. This creates a scenario where someone becomes disabled, enters the normal grieving process primed to regard their situation as intolerable and worried they will be 'a burden', because that's what they have been told disabled people are, and because they simply haven't had time to learn all the coping techniques that make managing a disability easier in the long term than the short term. Meanwhile all the people around them don't just hold the same views, but are pre-programmed to disbelieve them if they happen to say they are happy. If an emotionally vulnerable person is surrounded by people who believe their situation is intolerable, and that they would be better off dead, then there is a clear danger that they will internalise that view. If a Right to Die bill is on the Statute Books, then that provides an easy exit from a situation they and everyone else regards as intolerable. If there is no Right to Die, then they will be forced to confront their new reality and eventually, hopefully, join the vast majority of disabled people in realising they can still be happy with their lives. 

As the impetus to take advantage of a Right to Die comes from a society-wide flaw and the pressures disabled people experience as a result, that's why I prefer to label it as a Right to Kill Us. They might be unconscious of it, but it is normie pressures that push disabled people towards euthanasia. (And unfortunately some of them are conscious of it, and happy to embrace that, one of the disabled people I follow on twitter reported being urged to kill himself by a complete stranger while I was sitting outlining this blog).

Supporters of a Right to Kill Us might argue that the Falconer Bill does not provide for the scenario I have outlined; it insists that the person invoking it be terminally ill, but similar provisions were built into the Dutch and Belgian laws, and are now regularly ignored, with Belgian even allowing euthanasia of children. Equally it is clear that we are at the top of a slippery slope, none of the flagship cases used by the pro-Right-to-Die campaign would fall within the Falconer Bill's criteria, meaning the pressure to extend its remit already exists, even before it is law. Dignity in Dying denies it advocates extending the law beyond terminal illness, yet some of its patrons have truly radical views on how far we should go, with Professor Anthony 'A.C.' Grayling advocating on their website for assisted dying in cases of "painful or undignified unrelievable illness" which is so general as to cover pretty much all disability, certainly it would have covered me during the years when I was spending several hours a day curled up in agony, yet there were times I was both curled up in agony, and howling with laughter, pain and happiness are not incompatible - and isn't 'undignified' such a revealing insight into how he views disability itself.

The tragic irony in all this is that I do support the concept of a right to die in terminal illness, I just don't believe we can safely implement it while society holds, and advocates, such a flawed, negative view of disability. And that's why I oppose giving society the Right to Kill Us.

Saturday, 12 July 2014

Inclusion? Forgotten? Ambition? Lost? I don't think so!

A new article from the excellent Disability News Service describes Kate Green, Shadow Minister for Disabled People, speaking at the launch of the Just Fair consortium’s new report on the rights of disabled people (and how the Coalition has systematically eroded them), and noting that many of her Labour colleagues need to be educated on the Independent Living movement. Disturbingly she directs this at the newer Labour members, who we might hope would be rather better educated on disability rights, rather than at the old dinosaurs, some of whom have been some of our strongest defenders in a party whose recent stance on disability has been woefully lacklustre. But read on in the article and you come to the second and third last paragraphs, and I'll frankly admit my jaw dropped:

 The disabled activist and consultant Simon Stevens told the launch event that he was “very angry” with some disabled campaigners who focused on welfare issues when inclusion “isn’t even on the agenda”.
 
Green told him that she had criticised some disabled campaigners herself because “in an understandable need to fight for what has been lost and expose how very, very difficult that has been, people have lost their ambition for… a very, very different future”.

Taking these out of turn, I'd like to challenge Kate Green's accusation that 'people have lost their ambition for… a very, very different future'. That's simply not a statement that can bear the light of day. I've known many of the currently prominent campaigners since before they were either prominent or campaigners, as many of us were active on the BBC's Ouch bulletin boards back in the early 2000s. One common factor we all came away from there with was an absolute belief in the need for a society which implements the Social Model of Disability at its very core (and if we differed on the Social Model it was on whether it went quite far enough in adequately covering directly debilitating disabilities such as Crohns, EDS and ME). By arguing for a society that implements the Social Model we don't just point out the need for physical access provision, that's a completely inadequate reading of what the Social Model means; a society implementing the Social Model has to implement access and disability equality in every aspect of its being, not just in its physical built environment, but in its organisations, its businesses, its social structures, and ultimately in the very way people think of disability. We want to change the way people think, is it possible to be any more ambitious for our future?

But fighting for that future, fighting to change the way people think about disability, because only through that change will we reach that future, means challenging the poison spewing daily out of the DWP and the Tory rags, libelling us as frauds, workshy and scroungers, and to do that we need to concentrate our fight in the here and now. However ambitious our aims for the future, if they are built on the foundation of a population that overwhelmingly sees us as frauds and scroungers - a belief I had people repeating to me just a couple of days ago - then everything we achieve will be worthless. The fight for our future begins here and it begins now, and if it cannot be won here and now, then it can most certainly be lost.

Nor, ultimately, is Green's statement one that should be made even were the facts to support it. The mantra of the disability movement is Nothing For Us, Without Us, and the more I work with that statement, the wiser it seems, because Nothing For Us, Without Us, is really the Social Model in five words, and if we say something is a priority, then it behoves the Minister for Disabled People, Shadow or actual, to listen to what we say and not lecture us on what we should be thinking, because that is the antithesis of Nothing For Us, Without Us. If Green thinks we have lost ambition, then is that our fault? Or a symptom of the situation her party has stood by and allowed to develop over the past five years? It's difficult to care for the future when you're being abused by Atos and DWP in the now, and the proper response to that is not criticism, but to get in the trenches with us and fight so that we gain the breathing space that will allow us to craft a strategy to regain everything that we have lost since Labour's disastrous adoption of the poisonous BioPsychoSocial Model as the basis for ESA/WCA at the behest of US insurer Unum Provident. The tragedy of the last two governments is that between them they have destroyed forty years of progress in the position of disabled people in society, and if Kate Green thinks that we are not focussed sufficiently on the future, then perhaps she should reflect on our having forty years of past progress to reclaim first....

Turning now to the comments from Simon Stevens that Kate Green was replying to, the idea of Simon Stevens criticizing anyone else on Inclusion is enough to make me laugh until I weep. This is a man whose regular abuse of other disabled activists led to Leonard Cheshire withdrawing sponsorship for him to attend the 2013 Labour Conference, as documented in an earlier DNS story: Activist dropped by disability charity over offensive tweets Stevens is someone I've run afoul of myself, with him accusing me of supporting the Holocaust. What had I done to deserve that utterly horrendous accusation? I'd told him that disability benefits should apply to all disabled people who met the criteria, regardless of disability. And there we see why the idea of Simon Stevens advocating Inclusion is so risible, because he is a disability activist who actively campaigns to exclude disabilities he does not approve of. Stevens has been open in attacking disabilities such as Crohns, EDS, FMS and ME, and rather that just say 'I don't think these should count', his attacks have been ludicruous accusations that campaigners with these disabilities are actively seeking to murder disabled people with disabilities such as his CP. As the DNS article noted:
 
Much of his anger has been reserved for the grassroots network Disabled People Against Cuts (DPAC), on one occasion saying – in response to the claim that “Atos kills” through its work on the WCA – that it was “DPAC who murders disabled people with their lies and hatred for disabled people”.

Nor was it solely DPAC Stevens has attacked, Spartacus, and its report authors and spokespeople, have come in for similar attacks, as have many individual activists, with vitriolic accusations such asonly the fake disabled care about ATOS” (notably Stevens admitted in a blog for DNS that at the same time he was launching these attacks he was attempting to get a job with Atos as a consultant). If there is an antithesis of Inclusion, then surely it reaches no higher peak than knowingly declaring a disabled person to be a fake for reasons of personal political difference.

Thursday, 19 June 2014

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.

Thursday, 12 June 2014

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

@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:
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.

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:
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

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.













Wednesday, 14 May 2014

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

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



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


And



'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.

Tuesday, 13 May 2014

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.'