Wednesday, 31 October 2012

DPAC, A Step Too Far?

DPAC (Disabled People Against the Cuts) and Black Triangle have issued a joint statement on the Work Capability Assessment, which can be read here, that's wouldn't normally be a problem, in fact anything which highlights the nightmare which is the WCA is generally okay by me; unfortunately the statement doesn't limit itself to talking about the WCA. The first two paragraphs state:

"We do not believe that any individual or group who claims to represent the disabled people’s protest movement should engage with DWP/Atos/Capita without insisting upon an end to the Work Capability Assessment (WCA) with immediate effect as a prerequisite to any discussion.

 We regard any such engagement with DWP/Atos /Capita without this insistence on the above as a prerequisite to be nothing less than collusion in policies and systems that have been irrefutably shown to be harmful and, in many cases, lethal to the sick and/or disabled person being ‘assessed’."

I’d be lying if I said I found this statement to be anything other than deeply problematical.

Let’s clarify what I agree with first:
DWP is an institutionally disablist organisation currently dedicated to demonising disabled people in order to legitimise deep cuts and IDS’s ‘tough love’ strategy
ATOS is not a suitable organisation to execute the WCA or PIP testing
Evidence is mounting (interpreters contract), that Capita will be just as bad, possibly worse
Supposed DPOs engaging in secret negotiations with government or contractors forfeit any right to trust.
Disability charities are deeply compromised by their dependence on government contracts.
The Social Model should drive all our aims.
The BioPsychoSocial Model is a bought and paid for perversion that demonises disabled people for the profit of the insurance industry.

But here’s the problem, we are dealing with a fait accompli; ESA and the WCA are operational, the Work Programme is operational, it is overwhelmingly unlikely we will be able to force a stop to the implementation of PIP, or to Universal Credit. These are the realities we must address, these are the realities within which we must strive to protect disabled people, and we must do whatever it takes in order to get those protections in place as soon as possible. Not even an election and a Labour government will change this reality because Labour policy on ESA is no different, which makes it unlikely they will flinch from PIP either.

In considering how we change this, it’s useful to consider the widespread government policy of not negotiating with terrorists as an analogy (with DWP and ATOS taking the part of the terrorist). The policy says no negotiation will happen in response to threats or terrorist acts, but it is tacitly recognised that a long term solution generally depends on negotiation with the terrorists, no matter how unpalatable that may be. It brought the Provisional IRA to the table and eventually into conventional politics, it appears to be doing the same for ETA and others. A policy that works is one we cannot ignore. Yet from the opposite side another analogy also speaks to the situation: if you would sup with the devil, use a long spoon.

We have seen mounting evidence of ATOS lies in tender document claims of engagement with organisations such as DPAC itself, they demonstrably cannot be expected to behave as a trusted party in any negotiations, similar concerns may apply to Capita, and the DWP. However this in itself does not mean that they cannot be engaged with, it simply means people engaging with them need to systematically record and publish those contacts in order to deny ATOS, Capita or DWP any opportunity to misrepresent what went on.

Let’s consider a hypothetical situation. If we could engage with ATOS sufficiently to force them to shift to an open complaints/quality system (which I think is one of their weaknesses), if we could get DPO representatives into that system as independent auditors, then would we be justified in refusing to do that in favour of hoping for the big win of killing the WCA at some unforeseen point down the road? Should we insist on a big win, when we might have a far better chance of a series of smaller wins taking us slowly but surely towards our ultimate goal?

Or let’s consider a very real possibility, we already have condemnation of the WCA from the GPs, that creates the opportunity for us to ally ourselves with them and use that link to gradually manipulate the GMC itself – if you want to kill the WCA, what better way to do it than to persuade the GMC to declare it as incompatible with a doctor’s professional duties? But to do that we have to acknowledge that the GMC, as a part of the establishment, will never accept a negotiation strategy that imposes preconditions on their participation, while talk of collusion will simply alienate them. The strategy will only work with a policy of engagement.

We didn’t get all the way from being locked in the attic to the Equality Act in one single move, there were a whole series of steps involved in getting us there. In the past couple of years we have seen pretty much all of the progress we have made in the past 30 years rolled back on a tide of media manipulation and disability hatred, we’re in this for the long haul, it is going to take years to regain everything we have lost and anyone who refuses to acknowledge that reality needs to stop and take a long, hard look at what our situation actually is.

And one of the realities is that it is deeply unlikely we can overturn ESA, or WCA, or PIP, or the disability provisions of the Work Programme, in one fell swoop. However it is far more likely that we can incrementally chip away at the overwhelming negativity of these programmes, and as soon as we achieve one concession, we just start agitating for the next.

Ultimately we have a choice, is it better to aim for one big win, lots of little wins, or both? DPAC and Black Triangle can dedicate themselves to the big win, but does that necessarily mean another DPO aiming for the little wins is working against us? As long as that DPO is open about its engagement and does not allow that engagement to be misconstrued, then can’t the two strategies be complementary?

The statement talks aggressively about other DPOs engaging in collusion. If it works, will we still call it collusion? If the answer is no, then we shouldn’t be calling it collusion now.

(I initially posted this as a reply to the statement on the DPAC site on Tuesday 30th, but 24 hours later it is still stuck in moderation, while other messages, and replies to them, have gone through).

Thursday, 25 October 2012

Vote Early, Vote Often, Vote Lisy-Babe!

She’s cringing over the idea, but a bunch of us have decided that Lisa Egan, aka Lisy-Babe, aka the driving force behind Where’s The Benefit, should really be on this year’s Independent Pink List as one of the 101 most influential LGBT people in Britain.

Lisa is one of us, a wheelie, a spoony, someone whose disabilities brought her career as a stand-up comic to a grinding halt. Not one to let IDS, Lord Fraud and the rest of the bloodsuckers roosting in DWP Towers brand her, or us, as layabouts and scroungers, Lisa has been a major force in campaigning against the cuts in disability benefits and against the demonization of disabled people by the Tory press. Whether it is writing articles for WTB, or pushing herself to her limits to stand up for disabled people at demos and marches, I know that Lisa puts my efforts to shame, and I think that makes a real case for her to be on that list.

If, like me, you think a tireless disability rights activist sounds like the kind of person you want to see taking a place on the Pink List, then you can nominate Lisa here and you need to do it before nominations close on Sunday!

There's a longer piece on the many reasons you should vote for Lisa over at Diary of a Goldfish but all you need to remember is: Vote Early, Vote Often, Vote Lisa Egan!

Monday, 10 September 2012

Slightly Reassured, but...

After last week's bombshell over my painkiller prescription, I arranged an appointment with my GP for this morning. That turned out to be with the junior doctor in the practice, the one who recommended a month ago I actually increase my dosage, not cut it entirely.

Fortunately I got some sense out of her, though I'm still not entirely happy with what's going on. Apparently one of the higher-level agencies involved with prescribing has done some data-mining and decided there is too much Butrans being prescribed in Medway (it doesn't seem to have occurred to anyone this might have something to do with Medway being a former industrial centre, which is likely to have a higher than average concentration of people with ongoing chronic pain as a result of industrial injuries) , but rather than calling patients in for an individual review, my GP just decided to have a blanket change of prescriptions.

The junior GP did admit that some people will need to remain on Butrans after the process (and implied that GPs will need to individually defend any such decisions), but in the meantime we're being asked to jump through hoops not for individual medical reasons, but for some statistical anomaly. Given a doctor willing to work with me, I've actually managed to turn this to my advantage, we've agreed to try switching Butrans for Gabapentin, which is a pain-control drug I've wanted to try for a while. But equally I've had friends experience some quite frightening side-effects on gabapentin, so it's not a move to be made lightly and I may end up in a month's time back in the doctor's office, arguing that I'm one of the patients who do need to remain on Butrans. Sigh.

As an additional bonus, in flicking through my notes the junior GP noticed that there had been no follow-up from the nerve conduction testing my orthopaedic consultant arranged last year and chased it up on the spot - only to find no one answering the phone <rolls eyes>, I've left that one in her hands to see if she can get a response as to what they found - this was the test that ended with the consultant turning to me and saying 'Well, something's clearly not right', which isn't the most precise diagnosis I've ever had, nor particularly reassuring.

The NHS, can't live without it, can't live with it!

Thursday, 6 September 2012

Frankly Scared

When I went to bed last night I was happy. I was still in a lot of pain from my trip to the Paralympics the day before, I'd decided it really is time I look at the wheelchair option, and that I needed to talk to my GP about it, but these are the everyday realities of disability, they didn't change the fact that I was happy.

This morning I was woken by a phone-call, and now, frankly, I'm scared. The call was from my GP, in relation to the repeat prescription request I put in yesterday for my painkiller, Butrans (aka Buprenophine), and what she told me staggered me, she has been told to stop prescribing it. And although she was reluctant to go into the reasons, it appears they are solely financial.

In fact I had my annual medication review barely a fortnight ago with one of her colleagues, and her recommendation was that given the amount of pain I was reporting, I should actually increase the dosage. I declined the offer, I'd like to be able to increase the dosage, but I've tried that before and the side-effects don't make it worthwhile. But now, without any medical assessment of what it will do to me, I'm told that my prescription is going to be stopped. Worse, the drug suggested as a substitute doesn't work in remotely the same fashion and I know from past experience that it has side-effects bad enough I preferred to take nothing whatsoever.

Pain destroyed my working career, management weren't willing to deal with someone who ended up curled up in pain on the office floor most days. If I'm to have any hope of returning to work, I absolutely need to have effective pain control. Butrans is the only drug I've ever found that gives me that.

Technically Butrans is an opiate that's approximately 40 times the strength of Morphine (some literature suggests twice that), which means that my 5 microgramme/hour patch is delivering an equivalent of about 200 microgrammes of morphine/hour. The equivalent drugs are all similar opiates, all, like Butrans, on the controlled drug list, and the 5mcg/hour patch I use is the lowest strength available. The patch formulation is also both a more effective delivery mechanism, I'd need a far larger dosage for equivalent effect if taking it intermittently by mouth, and safer as it cannot deliver a higher dosage over a shorter time. Amitriptyline, the drug offered as a substitute, works in an entirely different manner (opiates work by bonding to opiate receptors, amitriptyline is an anti-depressant that has incidental pain control effects because it interferes with serotonin metabolism), I've used it before and it is completely ineffective on me as a pain control mechanism, while having overwhelming side-effects that left me barely able to function intellectually.

The single most effective step in pain control is when you take control of your pain rather than your pain controlling you. When I first went onto Butrans about four years ago it was a revelation, I had no idea that it was possible for me to live in so little pain. The amounts of pain I was experiencing were still disabling, but at least my first reaction on waking wasn't to yell out in pain anymore. Now the proposal is to take that away from me, for financial reasons, not medical, and frankly, I'm scared.

Wednesday, 29 August 2012

Not in My Name – Has the IPC Lost the Paralympics Plot?

As the 2012 Paralympics opens, disabled people are asking questions that go beyond the athletes and the competition; and those questions are directed at the International Paralympics Committee and its unholy partnership with AtoS. AtoS is the French multinational whose AtoS Healthcare subsidiary is charged by the UK government with carrying out the Work Capability Assessment to decide if disabled people are eligible for Employment Support Allowance, and which will soon also be carrying out the testing to determine if disabled people are eligible for PIP, the replacement for Disability Living Allowance, the benefit that recognises the extra costs imposed simply by living as a disabled person, whether you are in work or not. The reputation of AtoS on WCA testing is little short of appalling, around 40% of people refused benefit appeal, around 40% win their appeal, far more with appropriate support; so one in every six disabled people AtoS refuse benefit to successfully wins at appeal. Yet that appeal process can take up to a year, putting AtoS’s victims under near unbearable stress, and many disabilities are markedly worsened by stress. It is estimated that 32 disabled people a week are dying after having been declared fit for work by AtoS.

Nor it is solely disabled people who are paying the price for a failure rate that would be considered catastrophic in any other industry, fixing AtoS cock-ups costs the UK Taxpayer £50m/year over and above the more than £100m/year AtoS are paid for their ‘performance’. Given the expansion of AtoS responsibility to include PIP and as the DLA to PIP transition is defined by around one in five current DLA recipients (i.e. c500,000 people out of 2.5m) losing their eligibility for the benefit, the situation is likely only to worsen.

Unfortunately the failures of AtoS go far beyond the simple execution of the WCA. Staff attitudes have repeatedly and all but systematically proved wanting, with disabled people subjected to disablist slurs, homophobic rants, attempts to browbeat them out of giving vital information and just about every failure of a customer facing organisation you can imagine; completed assessment reports have repeatedly been found to contain accounts of tests that never took place and other outright falsehoods, to the point that the BMA found it necessary to issue a reminder to their doctors that simple honesty is a professional requirement. Even simply making eye contact with their victims is beyond many AtoS medical professionals. Yet AtoS executives persist in denying that there is any problem with their performance or that there are targets for denying claims implicit in their disciplinary practices.

On the physical level, AtoS have consistently refused to meet even the most basic of disability accessibility requirements, with many centres failing to feature disabled parking spaces or to be wheelchair accessible. Nor is this simply a problem with older buildings, AtoS have actually opened new centres which fail to meet the most basic accessibility needs. When challenged on this, AtoS claim their buildings meet legal accessibility standards, which more closely reflects the weakness of the Equality Act, which leaves enforcement to disabled people finding the physical, mental and financial resources to sue a multinational, rather than any willingness on the part of AtoS to do any more than the bare minimum. Nor is accessibility AtoS’s only resort to the legal defence, as disabled people started to organise and document their failures via social media, AtoS lawyers forced the shutting down of several disability forums, at least one of them solely because a user had posted a link to an article on another site which AtoS claimed breached their trademark.

So that’s AtoS, and their attitudes to disability are clear enough, but what does that have to do with the Paralympics? It started with computers, AtoS are primarily a computer company (disabled people would say it shows) and have the Olympic and Paralympic IT contracts. And, having considerable negative publicity to overcome, they decided to build on that linkage to become an official sponsor of both Olympics and Paralympics. And then something strange happened, the International Paralympic Committee and its Chairman, Sir Phillip Craven, decided that this disability hating company was not the worst possible partner for them, but instead the ideal partner for the IPC. The IPC’s Strategic Plan dedicates the IPC to “Change perceptions about people with a disability and existing stereotypes,” the opposite attitude to disability to that perpetuated by AtoS, yet it seems that when money talks, morality walks.

Nor did it stop there, the IPC’s reputation descending into French farce as it sank ever deeper into bed with AtoS. Not content with making them a ‘Worldwide Partner’, in August 2011 it took the unprecedented step of co-opting the former AtoS CEO, Bernard Bourigeaud, onto its governing board, despite the fact that Bourigeaud has no links with disability sport other than AtoS’s sponsorship of the IPC.

Faced with sustained criticism from disabled peoples’ organisations for its ever deepening ménage a trois with AtoS and Bourigeaud, the IPC reacted defensively, claiming AtoS shouldn’t suffer for the actions of its subsidiary and suggesting that in abusing disabled people AtoS were simply ‘doing their duty’. The ‘they were only following orders’ defence did little to impress disabled people.
And then it got stranger still, with Sir Phillip Craven, head of the IPC, going out of his way to defend AtoS, stating : "I am very happy with our relationship" and that AtoS were "very much a part of the International Paralympic Committee" while the Communications Director of the IPC, Craig Spence, dismissed the overwhelming opposition of British disabled people as ‘a small minority’ and said that people should take up their differences with the Department of Work And Pensions, apparently having forgotten (or desperately trying to ignore) that people and organisations are judged by the standards and behaviour of those they choose to associate themselves with – ‘You can tell a gentleman by the quality of his friends’.

The British Paralympic Association, effectively the local IPC subsidiary, tried to run for cover, issuing a confused statement that simultaneously claimed that it wished to “inspire a better world for disabled people” and that it did not want to “comment on wider, non-sport related disability issues”.

To compound everything else, a handful of days before the opening of the Games Sir Phillip Craven astonishingly demanded that the term ‘disabled’ should not be used in relationship to the Paralympics, claiming it was like saying disabled people were ‘broken’, yet, as Craven should well know, the overwhelming view of disability subscribed to by the British disability movement is the Social Model of Disability, which specifically defines our disability as the discrimination we face as the result of society’s refusal to adapt to our needs. Or to put it more simply: deny my disability, deny me.

There’s something very wrong when the International Paralympic Committee allows the core values of the Paralympics to be prostituted out in the hope of allowing a company with the literal blood of disabled people on its hands to wash the evidence away behind the cover of the Paralympic flag. At every step the IPC and its senior officials have revealed themselves to be out of step with disabled people to a degree that beggars belief, yet simultaneously willing to lie back and think of England whenever a sponsor waves a large wadge of cash under their nose.

Perhaps it is time for a change of regime, and for the IPC to return to its roots as an organisation that actually cared about the rights of disabled people.

Tuesday, 21 August 2012

Living in Fear of Being Labelled Inspiring

Now don’t get me wrong, I’m looking forward to the Paralympics, I’ve even made holiday plans around them, but something inside me cringes every time that I see a Paralympics trailer on TV.

There are two main culprits, Channel 4, the Paralympics broadcaster, for this little number “Meet the Superhumans,” and Sainsburys with “Here’s to extraordinary”. 

A quick look at the #Paralympics hashtag on Twitter shows that they are drawing a positive response:

“Love the Sainsburys paralympic games ad!”
“the paralympics advert is amazing #superhumans #paralympics”
“Anyone else get tears in their eyes watching the #sainsburies ad for the #paralympics”
“The C4 #Paralympics advert is class, can't wait for it to kick off. #channel4”

So why the cringing you may ask? Aren’t these ads saying something positive about disabled people? Aren’t they spreading the word that we can do everything that non-disabled people can do?

Well sort of.

There are actually two interrelated problems. The first is that true equality doesn’t demand we be seen as ‘superhuman’ or ‘extraordinary’, quite the reverse; it demands that our disabilities be no more notable than, say, our hair colour. I don’t personally believe there is anything uniquely inspiring about Paralympians, they are elite athletes, just as the Olympians are. The fact they are going through life with disabilities doesn’t say that they are somehow more worthy than an Olympian, or than any other person, disabled or non-disabled. There’s nothing special about being disabled, we get up, we do our stuff, we go to bed, just like any other person. I might need crutches to walk any distance, but there’s nothing remarkable about that, I pick them up just like I put on my shoes and pick up my keys, and occasionally I find myself standing outside the front door, thinking “I know I’ve forgotten something….”

And so every time I see a disabled person being labelled ‘inspiring’ I cringe, because that person isn’t being seen as normal, or even necessarily as a person, they’ve been reduced to a symbol, a Tiny Tim-like emblem that says non-disabled folk are okay to feel good about themselves for thinking we’re something special.

And then there’s the second problem, the one from the darker underbelly of our attitude towards disabled people. The one articulated by people like Cristina Odone in this Daily Telegraph article  which demands “Aren't the Paralympics proof that even the most physically challenged can achieve awesome feats?” while castigating us for protesting against the Work Capability Tests conducted by Paralympics sponsors Atos, which have included such recent triumphs as finding a sectioned, catatonic man fit for work, and having 32 disabled people a week dying after being told they are fit for work. You can read about my own experiences with Atos here and here. That ‘if they can do it then every disabled person can’ attitude sponsored by Odone’s article and others like it is incredibly pernicious, we see it in the rampant claims that there is massive disability benefit fraud (the actual rates are 0.5% and 0.3%, the lowest of any benefit except the pension), and the outright and open jealousy that is displayed towards disabled people who are recipients of the Motability Scheme and the Blue Badge Scheme.

Worse, we see it in the soaring rates of disability hate crime, with most disabled people now reporting recent incidents of harassment, many if not most targeting us as supposed ‘scroungers’. As noted in this Guardian article recorded hate crime rates have doubled since 2008, and the government believes that the real rate may be 30 times higher, at 65,000 incidents a year, nearly 180 every day, with charities putting the rate as much as 50% higher than that. Or to put a more immediate figure onto it, during the 12 days of the Paralympics, the government estimates that almost 2140 British disabled people will be abused for no reason other than their disability. My own experiences back those figures, with my personal count of incidents now into double figures, most verbal abuse, but including one physical assault and one attempt to frame me for benefit fraud.

And so, no matter how I much I am looking forward to watching the Paralympics, that anticipation is tinged with fear, because there are many, many people out there who will watch the Paralympics and say that ‘If they can do that, then any disabled person who claims they are too sick to work is clearly a scrounger,” and a distinct percentage of those people will then take it on themselves to ‘chastise’ the next ‘scrounger’ unfortunate enough to cross their path. There’s something profoundly sick in the likelihood of the Paralympics being used as a justification for disability hate crime, but recent history shows that it is a reality that disabled people will have to live with.

Thursday, 9 August 2012

The Most Accessible Olympics Ever

Lest We Forget (The BBC Clearly Have)

The BBC's coverage of disabled people over the last couple of years has been very hit and miss, from highs like last week's Panorama investigation of ATOS and the WCA, to lows like Panorama implying we're all on the fiddle and swanning around in yachts and Jags. Mostly it's been bad, with Auntie Beeb foregoing investigative reporting in favour of whatever twisted press release the DWP has put out most recently. And the less said about John Humphrys' propaganda piece for the Tories, or the odious Saints and Scroungers, the better.

When it was announced that the BBC had successfully bid to broadcast the Olympics, but had chosen not to cover the Paralympics, it seemed like more of the same. But I have to admit, their Olympic coverage has been generally superb. Tonight the BBC particularly impressed me, in the run-up to Usain Bolt's defence of his 200m title they chose to focus on one of the black-spots of Olympic history, the persecution of American 200m sprinters Tommie Smith (Gold) and John Carlos (Bronze) for giving Black Power salutes during the medal ceremony at the 1968 Olympics in Mexico City, and of Australian medalist Peter Norman (Silver) for supporting them by wearing an "Olympic Project for Human Rights" badge. Smith and Carlos were sent home from the Games, while Norman was reprimanded, excluded from the team for the 1972 Games, despite having set a national record that still stands, and even excluded from being a guest at the 2000 Sydney Games. Not exactly the shining example of the Olympic Spirit we might have hoped for.

After that piece of superb coverage I was even more delighted when they segued into another documentary piece, this one looking at the 1936 Berlin Games, and the horror of Eugenics. And that was when the BBC blew it. Less than three weeks away from the Paralympics, they listed the targets of the Holocaust as "Roma, Trade Unionists, Homosexuals and Jews". In a piece focussed on Eugenics under Hitler, with the Paralympics days away, they forgot to include Disabled People. It's difficult to describe what a kick in the teeth that was. Germany's own disabled people, followed soon enough by disabled people in occupied territories like Poland, were systematically slaughtered in the Aktion T4 programme, and it was the techniques applied against disabled victims that subsequently were targeted against those people the BBC did remember to list. Almost inevitably it is disabled people, the first victims, who are the forgotten victims of the Holocaust, just as the discrimination we face on the streets of contemporary Britain is overlooked or whitewashed away. In the run up to the Paralympics is it really too much to hope that the BBC might do better?

"Then they came for the sick, the so-called incurables,
And I remained silent because I was not disabled"
Pastor Martin Niemoeller (early version)

Wednesday, 16 May 2012

Disability Protest Art

A set of protest images I roughed out while away over Christmas.

It's a measure of how the year's progressing that it's taken me until today to get them transferred over to my desktop for final rendering. But the news that IDS wants to kick another half-million disabled people off the disability benefits that allow them to participate in society as equals makes them all too appropriate - not so much 'Big Society' as 'Big Disablist Society'.

If anyone has any ideas for a way we can use these, or even just a comment on the art, feel free to leave a comment.

(For those who are interested, the images are put together using DAZ Studio 4 and standard DAZ/Poser figures).

Tuesday, 6 March 2012

An Absence of Ethics

The Journal of Medical Ethics isn't something that most of us would read on a regular basis, but when it starts publishing peer-reviewed papers calling for 'after-birth abortion' of disabled babies, maybe it's time to make an exception.

The Giubilini and Minerva paper 'After Birth Abortion: Why Should the Baby Live?' is every bit as stomach-churning as you might expect, but what makes it worse is an editorial blog by Julian Savulescu not just defending the decision to publish, but deliberately setting out to portray those who object to the paper as solely ascientific, racist, right-wing thugs.

The authors, Giubilini and Minerva, have now published an open letter on the JME blog, apologising if people have found the arguments offensive and saying that's because it was only intended to be read by  'fellow bio-ethicists'. Oddly enough I don't find that particularly reassuring, if you want to argue that disability makes me inherently less, then I'm going to find that offensive no matter where you make the argument. Even if you keep it completely to yourself it still demeans every disabled person out there.

Potentially even more disturbing (there's an awful lot of not very effective post-facto covering your backside going on at the JME) is the assertion in a blog by the JME's Associate Editor, the Reverend Professor Emeritus Ken Boyd, that "It has subsequently been suggested to me that people whose lives might have been ended by ‘after-birth abortion’ were this legal, might be deeply offended by this paper. If that is the case I am sorry, but I am also confident that many of these people are equally capable of mounting a robust academic reply to the paper which, again subject to peer-review, the Journal of Medical Ethics will be very willing to consider for publication." I'm sorry? You're a Reverend Professor Emeritus, the editor of a scientific journal covering a particularly esoteric area of philosophy, which has just argued that a disabled life is inherently a lesser life, and you a) needed someone else to tell you that it is incredibly offensive, and b) are convinced there are many of us capable of writing a counter-argument that will pass peer review? I doubt that we can find enough people of any description capable of writing at that standard in that sub-speciality to meet most people's definition of many, never mind among disabled people. There's a deeply unpleasant double standard at play here, it's all right for ethical specialists to claim that our life is not worth living, but for us to have a right to reply we have to jump through their professional hoops?

Getting back to the paper, let's be clear before going any further, some of the comments addressed at the authors are abusive, racist, and they even stretch as far as death threats, there can be no justification for abusive attacks of that nature. Yet those objections are not the only objections; I am proud to proclaim myself a bleeding heart liberal, I certainly have no truck with racism or discrimination in any way, shape or form, and my scientific/engineering background pretty much defines me, and there are plenty of similar responses, so seeing the editor seeking to dismiss anyone who objects as universally right-wing thugs and racists seems a little, well, unethical.

The paper starts from the explicitly Medical Model presumption that a disabled life is a lesser life and proceeds from that to define a disabled person as a non-person. Imagine the firestorm if it had argued a non-Caucasian life is a lesser life, a non-person. I am disabled, for me there can be no difference between the two positions. This is a frightening time for disabled people, we see a hardening of attitudes towards us, we face harassment in the streets if not outright assault (I'm into double figures myself with hate crime incidents), we are increasingly portrayed as fakes, frauds and scroungers by media and our own governments, and, perhaps most chillingly of all, we see a resurgence of eugenics within the bio-ethics community, and that community attempting to justify and defend those who spawn such hateful views (the authors and the editors can object to the emotive language once they have faced physical assault in the street from utter strangers simply for walking while disabled).

Disability hate crime in the UK has reached the point that rabbis are now drawing explicit parallels with Germany in the 1930s, any bio-ethicist should be well aware of what came next. I imagine the authors might argue that such things could never happen again, they certainly seem to have no clue about the constant threats disabled people are living under, but the entirety of Aktion T4! sprang from the argument that the life of a single baby was not worth living, doctors took away that child's name, made him a non-person, killed him, but we know now that his name was Gerhard Kretschmar, and that that one death opened the floodgates for a pogrom directed at Germany's own disabled people, serving as a prototype for all the horrors that are better known from the later Holocaust against Jews, Gypsies and others. Is the paper's position really any different to that put forward by Hitler's personal doctor when tasked to create a plan of action? The authors argue once more that disabled babies are non-people, and where that argument might lead in the current hostile environment towards disabled people is a prospect we are fully entitled to find very frightening. The authors don't even have the courage to call infanticide infanticide, labelling it instead 'post-birth abortion'. If their logic is flawless then it should hold whatever the name, yet to hide the reality of what they propose they obfuscate it behind a smokescreen of changing names and vaporous pseudo-logic. What does that tell us?

There are two differences this time around. Disabled people have a voice now and we will not go gentle into that good night. If ethicists argue that we are less, or defend those do, then they must expect to be regarded as the disablists their views reveal them to be, to be treated with the contempt they deserve and challenged for it, just as racists are challenged whenever they rear their ugly ideologies into the view of civilised people. The second difference is that bio-ethicists have been down this path before, they know the risks and where it might lead, they know that a disabled life is almost without exception a full and fulfilling one, but that the acceptance of disabled people into society as true equals is deeply problematical, with disability hate crime a very real threat. They have the professional responsibility not to set either of those points aside when debating the issue, and to demand a full and frank discussion of all of them as a minimal standard of any peer-reviewed paper. Ethics demands no less, but Ethics was failed by the decision to publish the paper, most especially by the decision to publish unchallenged and uncondemned.

My assessment, one I doubt I'm alone in within the disabled community, is that the leadership and rank and file of the bio-ethics establishment have been consistently failing at these tasks for the past decade or more, that they have neither actively argued the equal value of disabled life, nor adequately challenged those who try to advocate eugenics based euthanasia to justify the risks they raise for disabled people. To argue that disabled life is a lesser life is no different to racism, to defend the right to those views at a time when disabled people face a rising tide of harassment and hate is no different to defending racism in a racially charged environment. Will they rise to the challenge and stand alongside disabled people to do what is right, or are they condemned to repeat the lessons of history?

Time to clean house.

Wednesday, 8 February 2012

Reckless By Name....

Back in June last year BBC South East Today interviewed me about the rise in disability hate crime as the result of DWP propaganda portraying us as universally fakes and scroungers. The BBC gave Mark Reckless MP (Conservative, Rochester and Strood) a chance to put the government view. Unfortunately rather than condemning the abuse, he chose to come out with the appalling line "A lot of my constituents, hard-working people ... they feel real anger when they see people ... they don't believe are disabled" (it's a long, convoluted sentence, but I don't believe I've distorted his meaning). No thought that people are not competent to judge the disability of others, no thought about whether the disabled person is entitled to what they receive, no thought they might not even be a benefit claimant (I had abuse even while working and claiming nothing), just a chilling Conservative assertion that jealousy legitimises hatred against the disabled.

As the rise in disability hate crime is in the news again this came up in discussion today, and someone pointed out that the interview with Mark Reckless is actually up on his web-site. Apparently he's proud of what he said.

I was going to put up the letter that I sent him, and to which he never replied, but I think his words speak for themselves, and for the attitude of his party.

Wednesday, 25 January 2012

38 Degrees: Part Way There

38 Degrees are finally asking people to throw their weight behind changes to the Welfare Reform Bill. That’s good, that’s really, really good, but that doesn’t mean that this series of blogs has completely achieved its purpose. Help fighting the Welfare Reform Bill is a huge part of what disabled people have been asking 38 Degrees for over the past year, that lack of support is what started me blogging on the subject, the call to arms to oppose the Welfare Reform Bill is what I set out to achieve, but asking for that help has thrown light on a problem at the heart of 38 Degrees itself.

An organisation that builds its identity around its democratic mechanisms needs those mechanisms to be accessible to all, but the truth is that they aren’t. The near insurmountable difficulties disabled people have faced in getting support in the 38 Degrees votes on where to campaign next are just one aspect of that problem; any demonised minority, Travellers for instance, is going to face the same issues. If disabled people are begging for support, with well beyond half a million of us facing losing our benefits, and we are losing the votes, yet badgers are winning*, then isn’t there a problem 38 Degrees need to address? That’s a major problem in itself, but the problem extends even further.

People in social housing don’t face quite the same problems in demonization that disabled people do, yet they are another disenfranchised minority when it comes to campaigning for support from 38 Degrees, Martha Lane Fox, in her role as web accessibility tsar, pointed out before Christmas that half of people in social housing have no way of getting online, and therefore no easy way to try and ask for support from 38 Degrees, no matter how worthy their cause. That's a feature they share with disabled adults, a very high proportion of whom have never been online and who, on top of the demonization, are similarly restricted in lack of Net access when trying to get help from 38 Degrees.

The two groups most comprehensively disenfranchised by lack of Net access were the same two groups most savagely targeted by the Welfare Reform Bill, and the same two groups worst placed to get the support they needed from 38 Degrees. Even badgers have better (if indirect) Net access. An organisation which prides itself on the democracy at the core of everything it does cannot ignore the fact that those who need its help most desperately can't even get into the polling booth….

The fight to get 38 Degrees into the battle over the Welfare Reform Bill has been won, but the need for change in 38 Degrees itelf remains. The principles at the core of 38 Degrees mean that it cannot afford to remain an organisation that disenfranchises those who cannot afford to be online, just as it cannot afford to disenfranchise those demonized by the media or society (particularly when that demonization extends into the beliefs of its supporters). 38 Degrees cannot afford to be seen as solely a tool of the trendy, web-enabled, chattering classes, but unless everyone can access its help on an equal basis, then isn’t that ultimately what it is?

* I signed the badger petition, I have nothing against badgers, the cull is bad science, but their cute, furry beeline to the heart of active, online 38 Degrees voters is the clearest example I know of the problem I’m trying to highlight.

Friday, 13 January 2012

Where is 38 Degrees? The World Wonders.

This week, disabled campaigners launched the SpartacusReport , demolishing the logic, and truthfulness, of the government case supporting the Welfare Reform Bill’s brutal assault on disability benefits. And on Wednesday night the government suffered 3 consecutive defeats in the House of Lords over amendments to the Bill, the biggest defeat of this parliament to date. Having spent two years studiously ignoring us the media didn’t seem to know how to handle that, the BBC seemed almost to imply that we were being irresponsible for daring to oppose cuts.

Getting access into the media, and to non-disabled people as a whole, is a very large part of the reason we have been appealing for a year or more for mainstream campaign groups such as 38 Degrees, UK Uncut and OccupyLSX to get behind our campaigns, even if only by drawing them to their members attention. But progress has been terribly slow, at a time when, with the Welfare Reform Bill almost law, a laggardly reaction is the last thing disabled people can afford. I’ve made some progress with getting 38 Degrees to admit there is an issue, as seen in blogs here and my guest blog on their own site,  and their campaign on Legal Aid is a start, but Legal Aid is a tiny skirmish on the fringes of the main battle, the Welfare Reform Bill which threatens to leave hundreds of thousands of disabled people without any government support whatsoever, even while the government admits that they are not fit to work, while gutting just about every other disability benefit in the name of party ideology.

Meanwhile a handful of disabled campaigners, with next to no resources, either physical or financial, have stood their ground and inflicted a major defeat on the government through nothing more than smart, net-savvy campaigning, supposedly the very strengths on which 38 Degrees prides itself. In christening their paper the Spartacus Report the team behind it tapped into the media image of Spartacus, the slave who refused to be cowed by the might of Rome and led a revolt that is still legendary two millennia later. On Monday, #SpartacusReport became the number one trending hashtag on Twitter. On Wednesday, Spartacus was triumphant in the Lords,  but the battle isn’t over and the Coalition is threatening to reverse our victories in the Commons.

This would have been the perfect moment for the mainstream groups to throw their weight behind us, to combine their media access and mass membership with our analysis and use the impetus of victory to save literally millions of disabled and other vulnerable people from the vicious, bullying attacks of the Welfare Reform Bill. 38 Degrees showed its ability to rapidly seize and exploit political opportunities with the ‘I am not a Zombie’ campaign, turning a ministerial attack on 38 Degrees members into a media-worthy demonstration of Coalition arrogance in the space of just a couple of days; but it’s Friday now, the Spartacus Report has been out there for five days, and we’re still waiting for 38 Degrees to declare ‘I’m Spartacus’ and urge their members to do the same.

The Spartacus Revolt is the obvious analogy for the Spartacus Report, but in considering the role of 38 Degrees in this I’m reminded more of the WWII Battle of Leyte Gulf. In the middle of the battle, with US forces fighting their way ashore in the Philippines, the US battlefleet, Task Force 34, was lured away, leaving the invasion beaches open to the Japanese battlefleet, including the mighty Yamato, the largest battleship ever built. A handful of US light ships, Taffy 3, with no hope of winning, threw themselves into the teeth of the Japanese guns, and earned themselves a place in history by driving the Japanese off. As they fought for their lives signals were sent pleading for the US battlefleet to turn around and involve itself in the only battle that mattered. One of those signals has become emblematic of plunging headlong in the opposite direction to the real fight: “Where is Task Force 34? The World Wonders.”

Legal Aid is important, vital even, but Legal Aid can only help disabled people to access those rights they are granted in law. The Welfare Reform Bill will destroy many of those rights for ever.  

Where is 38 Degrees? The World Wonders