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.