Tuesday 24 May 2011

Cuts and hate crime

The IPCC report into Leicestershire police's failing to tackle the disablist hate that resulted in Fiona Pilkington killing herself and her daughter Francecca Hardwick is to be released today.

Several news sources have written about this. The Guardian have this quote from Professor Alan Roulstone from Northumbria University:

"There's a whole series of problems stacking up. There will be other Pilkingtons, sadly."

Roulstone then goes on to explain:

"With the current cuts, hate crime is slipping down the agenda. It wouldn't be right to name police forces, but certainly more than one force has said to me they don't have the money for training updates. Police officers understanding disability is a challenge, and very few forces manage to roll out training which makes sense to officers at the ground level."

This article, along with all the others I've seen, acknowledge that police cuts will result in disablist hate crime not being handled appropriately, but what the articles don't mention is that the benefit cuts and surrounding rhetoric are fuelling an increase in disablist harassment.

Our own incurable hippie wrote about being followed down the street by a man shouting "fucking DLA stick" at her. Then this blogger wrote about being called a "scrounging cunt" in the street.

When it comes to hate the cuts are hitting us from every side. They're making us more likely to be subjected to harassment and it less likely for the authorities to take that persecution seriously. As for the subject of suicide, just have a flick through WtB and you'll see a significant percentage of posts have comments following them in which readers express their intention to kill themselves when they lose their benefits.

Sunday 22 May 2011

Disabled People, Still Labour's Whipping Boy....

I've just read the text of Ed Miliband's latest speech, and it's full of carefully turned phrases on how Labour can be a real prospect at the next election, of how it will make Britain a land fit for those who work hard and deserve the rewards of that labour, and that's all to the good.

But then you come to this statement:

"People felt particularly angry about those they felt could work, but didn't, as making ends meet became more and more of a struggle.

We were too relaxed about that too."

Let's be absolutely clear about this, the head of the Labour Party, the Leader of the Opposition, the supposed voice of social justice, just said that one of the reasons they lost the election is that they didn't put the boot into disabled people hard enough.

He then has the nerve to claim:

"In power after 1997 we did something that few countries managed to do - stem the rising tide of inequality.

We did this by redistributing through the tax and benefit system."

So clearly as disabled people we were wrong to complain about the calculated campaign of demonizing vitriol pouring out of DWP and their sockpuppet hatemongers in the tabloids, the WCA tests carefully designed to exclude many hundreds of thousands of disabled people, the appalling manner in which ATOS were allowed, if not actively encouraged, to enforce those tests; it was all done in the name of equality. Or maybe not.

Maybe the truth is that Labour saw us as convenient whipping boys who could be abused in the name of scoring a few points with the Little-Englanders who love to hate anyone who fails to fit their fairytale of England, maybe the truth is that they still do. No matter what I say, there aren't words to adequately express my contempt for this speech and what it reveals about the disablist thinking at the heart of Labour's leadership that sees us as a convenient pawn to sacrifice in their lust for power.

Welfare for the people, by the people - a Consultation

Did you ever wish you hadn't started something?

When I started my blog, 
http://diaryofabenefitscrounger.blogspot.com/ I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.

*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 

**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here 

Wednesday 18 May 2011


Last week Maria Miller - the minister for disabled people - said we needed welfare reform because "Well it can't be right that we have a benefits system where, under DLA, more people who are either alcoholics or drug addicts are in receipt of the higher rate of disability allowance than people who are blind."

The reason that more addicts will be getting High Rate Care (HRC) than blind people is because to get the higher rate care you have to need assistance 24 hours a day. Alcoholics will often need support during the night in case they end up so drunk they pass out and vomit. If someone passes out on their back and vomits they will aspirate their vomit and die so someone needs to be present to roll them into the recovery position if needed. Whereas blind people - unless they have additional medical complications - will typically sleep through the night. If they do have additional medical complications then they'll be the reason why they get HRC rather than the blindness. So that's why we have a system where more addicts get HRC than blind people.

The claim that Miller was trying to make in a roundabout way without actually saying so was that the welfare reforms are only going be targeting people with socially unacceptable impairments, by which I mean conditions that tabloid readers don't like, like alcoholism. She was trying claim, indirectly, that people with socially acceptable conditions will fare OK under welfare reform, that they'll protect the "most vulnerable."

I have osteogenesis imperfecta (OI). I've broken about 50 bones. OI is presumably one of the conditions Miller thinks the public finds socially acceptable so I would be one of the people that Miller was alluding to when she said that the most vulnerable would be protected. I get Disability Living Allowance. I get the high rate mobility (HRM) component and middle rate care (MRC) component.

I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My aforementioned osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street (and it's a short street) before my knees had swollen up so much that I couldn't bend them for the rest of the day. My consultant orthopod has told me to walk less than the little bit I already do around the house because I'm causing permanent damage to my joints. I'm wearing them out and I'm only 32.

I then get MRC because I need constant supervision due to injuring easily. Activities during which I’ve broken bones include walking1, sleeping2 and eating3. So the government can't scrimp on my supervision by telling me to cut out risky activities cos, you know, eating and sleeping are essential for survival.

You'd think I'd be one of the people the government would consider "vulnerable," right?


Flicking through the draft criteria for DLA's replacement, the Personal Independence Payment (PIP), it looks like in future I won't be getting a penny.

The mobility component will no longer be assessed on your ability to "walk", it will be assessed on your ability to "mobilise". The difference being that they'll consider your ability to get around using a wheelchair. And if you can get around using a wheelchair your benefit will be denied.

If you could use a wheelchair if only you owned one you'll be assessed using an "imaginary wheelchair". And if you can use said imaginary wheelchair you will be denied the benefit that would allow you to buy an actual wheelchair made of proper materials and not just Miller's fanciful thoughts.

Then there's the "Daily Living" component which will be assessed on the following criteria:

  1. Planning and buying food and drink;
  2. Preparing and cooking food;
  3. Taking nutrition;
  4. Managing medication and monitoring health conditions;
  5. Managing prescribed therapies other than medication;
  6. Washing, bathing and grooming;
  7. Managing toilet needs or incontinence;
  8. Dressing and undressing; and
  9. Communicating with others.

Notice how "needs supervision for safety reasons" has gone? Presumably so those addicts will lose the entitlement to supervision so they drown in their own vomit. But it'll also not only affect people like me who injure easily for physical reasons, it'll no doubt affect a huge number of people who currently get DLA due to mental health problems or conditions like epilepsy.

In short: I'm fucked. DLA is the benefit to cover some of the extra costs of disability. It doesn't cover many of those costs anyway and it looks like in 2013 I'm set to lose that little bit of money that allows me some semblance of independence and life.

Miller claims the system needs reforming because it's not helping the right people. I'm loathe to define myself as "needy" or "vulnerable" but thanks to these reforms I will become both. And please remember this post the next time you hear someone from the government claim that welfare reform is about "weeding out the scroungers" while "protecting the most vulnerable."

Edited to add: Over at The Broken of Britain there's a post detailing how to make your objections to the new PIP assessment criteria known. You can also write to your MP making your objections known.

1 December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.
2 In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae.
3 As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).

Sunday 15 May 2011

Observing mistakes

The Guardian have been pretty great about representing the recent government and media attacks on benefit claimants. They were one of the few news outlets that devoted more than a "blink and you'll miss it" amount of coverage to the Hardest Hit march on Wednesday. Society Guardian have been particularly good to us at WtB.

So it was quite disappointing to need to send the following Email to reader@observer.co.uk this morning:

I was going to complain about http://www.guardian.co.uk/society/2011/may/15/disability-living-allowance-scope-cuts erroneously claiming that DLA is “the benefit now given to 1.9 million people deemed physically unable to work.” But you corrected while I was in the middle of typing.

However, I’m not satisfied with your correction. The correction says:

“The original conflated the number of people on disability living allowance and the incapacity benefit. This has been corrected.”

That’s not true. “DLA is given to people physically unable to work” is not a conflation of figures, it’s an outright untruth.

As a DLA claimant I would appreciate greatly if you corrected your correction.

Additionally an older version of the article with a different URL, title, photo and byline here http://www.guardian.co.uk/society/2011/may/14/disabled-face-increasing-hostility-strangers still contains the inaccurate “disability living allowance, the benefit now given to 1.9 million people deemed physically unable to work.”

DLA is not an out of work benefit. DLA is to cover the extra costs of being disabled regardless of your employment status. If a wheelchair user finds a job, does their need to buy a new wheelchair every few years disappear? No.

If someone who needs help getting out of bed in the morning gets a job, does that assistance need disappear? No.

So DLA, the benefit to help pay for those things, doesn’t disappear when you get a job either.

Ironically the article is about the hostility towards disabled people since welfare reform began. Articles like this only fuel that hatred by making readers think there are more “fakers” than there are. By stating that DLA is an out of work benefit you’re feeding people the lie that there are numerous workers fraudulently claiming out of work benefits. Because there are many people on DLA that do work legitimately.

Lisa Egan

Edit 24/5/11: Happy to report that the article published on Saturday May 14th has now been corrected. However the article posted on Sunday 15th May still has the inadequate amendment.

Friday 13 May 2011

WtB Podcast - 1. Protest Against Atos Origin

Lisa's note: WtB has a podcast! I'm so very excited. I have to say a huge, huge, huge thanks to Goldfish for all her hard work this week making this audio file into a podcast by doing all the research as to how one actually sets up a podcast. She typed up the transcript that's beneath the jump too. I also have to say thanks to the people that spoke to me on Monday. We'd have no audio file if it weren't for them.

You can find our podcast in iTunes here. The feedburner feed is here.

Wednesday 11 May 2011

Conversations with my cab driver

I'm going to write a big old post about the Hardest Hit march and rally filled with photos in a little while. I got a taxi home from the event and I wanted to share the conversation I had with my cab driver:

  1. Before I forget the details.
  2. Because I think it deserves its own post separate from the main write-up about the events of the day.

I know some people who take a lot of taxis and always strike up a conversation with the driver. I rarely take taxis because I can't afford them. And even when I do I don't tend to talk to the driver because I'm awful at striking up conversations with strangers.

But today I overheard the driver talking on the phone in which he said "I didn't see any demonstration. I don't know what they were demonstrating about..."

So once he got off the phone I explained that the demonstration had been a bit earlier but it was over now and the roads had all reopened. And that it was a protest against the cuts to disability benefits.

"But if you get, say, £100 a week, they're not gonna cut that down to £70 though, are they?"

I explained that actually the planned cuts were much more brutal than that. He still didn't seem to quite accept when I explained just how cruelly disabled people were being treated. He just couldn't comprehend that our government could really do that to disabled people.

"Now, you see, the trouble is is all these fakers."

I tried to tell him that the official fraud rate for IB is around 1% (see page 8 of this DWP report), but on this he just wouldn't believe me. He insisted that there are fraudulent IB claimants everywhere.

I tried to explain that most people have a story of the time they met a faker. The government acknowledges that one in every 100 IB claimants is a fraud. But those other 99 are people he's less likely to meet. The other 99 will include people who are housebound or can't afford to go out and take taxis. The 1% who are fakers might be more visible than the 99% of genuine claimants, but that doesn't mean that they account for any more than 1%. He refused to accept this.

"But why do you believe that it's only 1%?"

The conversation got quite difficult for me here because he made it out to be a matter of religious-type belief. I tried to explain that the 1% figure are the government's official statistics but he wouldn't concede they were "right", he was only willing to accept that I believed them, but he chose to believe the tabloid-ised stats.

"I mean people in wheelchairs and that are obviously genuine, but I think a lot are fakers."

This turned out to be a simple claim to refute when he revealed that he had spondylosis and he found even walking short distances to be painful. He was perfectly willing to accept that some people have conditions that you can't see because he has one himself. I think his statement purely came from repeating sentiments he'd read in the tabloids but had never really thought much about.

But this did lead on to:

"Well I work and pay taxes so I don't see why I should be paying for benefits for people who could work."

We were stopped at some traffic lights about 100 metres from the end of my journey so sadly I didn't have time to address the "well I'm disabled and I work so why can't other people?" subtextual element to the question.

But what I did have time to explain was DLA. I explained that DLA was a benefit that disabled people could get for help with getting around and help with care. And that the benefit wasn't affected by your employment status because if you find a job your need to buy a wheelchair or your need for help getting out of bed in the morning doesn't go away.

I had to explain that the government and the media, in their attempts to whip up hatred towards disabled people, keep claiming that DLA is an "out of work" benefit. So despite what you might read in the papers there are some people who have a job and get benefits, but aren't getting those benefits fraudulently. He seemed to think that, actually, DLA was a really good idea.

Alas my journey ended here. It was quite a shocking conversation for me because it really drove home just much people believe the lies printed in the papers. He seemed like a genuinely nice bloke; I mean he pulled his cab over to pick up a wheelchair user which most cabbies won't so that's a fair indicator of his decentness. But for so long he's been fed these stories that there's a huge problem with people claiming benefits fraudulently that he now believes it and won't accept when just one person points out the facts to him because it's a lone voice in the face of all this propaganda. And so many times he's heard that "the most vulnerable will be protected" that he can't quite grasp that that's not true either.

The fare came to £11.40. He would only let me pay £7.

That Proverbial 'Bad Back'

Goldfish has already had one pop at this BBC article, but I want to pick it up on a specific point and look at it on a little more personal a basis than I would normally use for WTB.

"during that time there was a widespread belief that back pain could be long-term and could seriously incapacitate people.

Now, people are aware that if they strain a muscle they can be better in a few weeks, Professor Coggon said."

Alleluia! Praise the Lord! I'm cured!

Or maybe not. Maybe there's more to it than the 'good' Professor Coggon is letting on.

We've been seeing a lot of this in the past few months, disabling conditions deliberately undermined to outrage the Tabloidigentsia. Cystic Fibrosis - cough. Epidermylosis Bullosa - blisters. Prader-Willi Syndrome - obese. It's bad enough when they target the rarer conditions without the weight of numbers to enable the people with them to fight back, but a constant in the background statistics when people with these conditions are derided are the far larger figures for 'depression' and 'bad back', with the unspoken intimation that these are just as false. I don't really have the background to discuss clinical depression beyond being sadly aware of how badly skewed are the opinions of the vast majority in our society towards it, but 'a bad back' I have known intimately for twenty-odd years.

The first thing to notice is the labelling, always 'bad back', never 'spinal injury', because that deliberately taps into the undercurrent of belief that we are all shirkers and fakers. Most people have had some experience with back pain, some will even proclaim that they 'suffer with their back', but almost always there will be the implied 'but I cope and so should they'. Then along come tame experts like Professor Coggon, proclaiming that back pain can be cured, if you really want to be cured.

Strangely enough the hired guns always seem to be occupational health doctors, the ones whose bread and butter comes from saying what industry or government wants of them, you never seem to see a spinal surgeon or a pain management specialist up there rubbishing the reality of these disabilities.

A soft tissue spinal injury may have a good chance of healing in a few months, but for many people that healing never occurs, because it isn't simply a pulled muscle - thanks for that one, Professor Coggon! Let's really undermine the shirkers with the most trivial injury imaginable - it's a much more complex situation involving injuries to muscle, bone, nerves and discs. There's a wonderful phenomenon called 'neuroplastic remodelling' in which the spinal cord rewires itself to make pain normal, even if the original injury is gone. Then there's Chronic Pain Syndrome, which is a label for pain that continues longer than 3 months without clear physical cause. Or Facet Joint Syndrome, which is pain from damage to the facet joints at the tip of the wings of the vertebrae, Or Degenerative Disc Disease, in which the discs slowly narrow and can burst, while the vertebrae grow arthritic spurs of new bone, all of the changes constricting the space through which the nerves are meant to pass. And so on. A whole medical speciality's worth of long term conditions that won't magically go away in three months because some hired gun who specialises in 'Occupational Health' says that they should. Even 20 years on I don't really have a clear diagnosis for everything that's going on, my local rheumatology department recently told me they don't actually have anyone qualified to assess my complete set of spinal issues. And I'm far from alone in that. The absence of a definitive diagnosis even after decades of seeing specialists is not a cause for suspicion, it is a recognition of the sheer range and complexity of spinal injuries.

"If it was real it would show up on an x-ray, or an MRI" the self-proclaimed expert in the pub or the office will often claim. Unfortunately self-proclaimed is not the same as actual. I had so many x-rays in the years after I initially became disabled that I was starting to worry about glowing in the dark, never mind cumulative dosage, yet they showed nothing and my consultant was visibly stressed at his failure to isolate the cause because he could see my disability was very real. It finally took a full body bone scan with radioactive tracer to get even a hint of what was going on, and if the problem had been solely neurological, for instance through neuroplastic remodelling, then not even that would have been true. My more recent c-spine problems do show up on MRI, but it was four years from onset of C-spine problems to getting that MRI, 21 years on from first presenting with a clear spinal injury. After 22 years of spinal problems that remains the only spinal MRI I have had, and the analysis makes no reference whatsoever to my still very disabling lumbar spine problems (though it does point out incipient problems in four other major joints). Scans and X-rays are not magical, they do not automatically locate every possible form of spinal injury, sometimes spinal problems are only apparent during dynamic movement or at certain positions, not the neutral postures used for scans and x-rays, and often we have to fight for anything more than the most basic x-ray, and sometimes even that.

Even if we can get people to accept that our disabilities are real, we then face the difficulty of getting them to admit that they are actually disabling. Auntie Agatha may 'suffer terribly' with their back and run three marathons before breakfast, and everyone with an opinion is delighted to explain how they had a bad back once but worked through it, but the reality of long term spinal injuries is in an entirely different dimension to anything most people will ever have encountered. The problem we face is that pain is invisible and that long term pain doesn't go away, it's there one damned day after another. If you're dealing with it every day then whinging about being ill and in pain isn't an option, life goes on and I look the same whether I'm pain free or whether it feels like someone has rammed a dagger into my spine and is laying into it with a sledgehammer. We are often talking about degrees of pain that most people never imagine, never mind encounter, about feeling like bones are sheering apart, or like you have a second degree burn across substantial (and sensitive!) parts of your anatomy. Yes, there are painkillers we can take, all with their own side-effects, but they aren't a solution, when I talk about hammering daggers and extensive burns, those are the sensations with the opiates, not without!

'Surely there's an operation for that?' people ask. Not necessarily, is the unfortunate answer. There's that inconvenient absence of clear diagnoses, for one thing, it is difficult to know what to cut if you don't know what's causing the problem. Then there is the unfortunate reality that cutting may make it worse -- 'Failed Back-Surgery Syndrome' is a very real diagnostic label -- or cause problems at a different level of the spine - a common treatment is to fuse two or more vertebrae into a solid lump, but that simply causes extra stress to the joints on either side of the fusion. Then there are neuroplastic remodelling and Chronic Pain Syndrome, which are by definition independent of any musculo-skeletal clause. Similar problems occur with physiotherapy, which tends to be focussed on those simple pulled muscles and thrashes about in the dark when faced with any more complex problem. Over the years I've had back classes, traction, bracing, manipulation, hydrotherapy, you name it, they've tried it with me, but with no evidence of any joined-up thinking to link one set of treatment to another and try and work out a systematic approach. Eventually those of us who are lucky end up being referred to Chronic Pain Management teams. That is an explicit acknowledgement that the pain isn't going away, that the disability is here to stay and that no more active intervention is envisaged. Forget cure, hello coping.

So the next time Cameron, or Clegg, or Grayling are ranting about how ridiculous it is that people have dared to be disabled for more than 3 minutes without being cured, and there's that big set of statistics on the screen behind him, with 'depression' and 'bad back' highlighted for all to see, remember that the reality you need to consider isn't the one they're painting, it's mine.

More Sloppy BBC 'Journalism'

In a new article on BBC Politics, Auntie takes a look at the situation with WCA and the charities protesting against it (no mention of disabled peoples groups -- I guess we don't count). Just for once they actually give enough detail to demonstrate that there clearly are failures in the design and implementation of WCA, though they do tend to take the Harrington Report on trust.

But then they cite last month's ESA figures and sum them up as "Only 6% of claims - 73,500 people - were considered to be entitled to full ESA support."

Hang on a minute, 6%? Where did that come from? 94% of applicants aren't entitled to ESA?

Look closer and the problem becomes clear, Auntie can't add up.

1,175,700 people applied for ESA in the period covered by the stats.

According to Auntie, 887,300 people (75.5%) had their claims rejected or were forced into withdrawing their claims --which doesn't mean they aren't disabled, flaws in the WCA are, after all, the supposed point of the article. Going to the original DWP source data shows that these split roughly 50:50 (39% 'fit for work': 36% 'withdrew claim').

Which leaves 288,400 people (24.5%) who passed the WCA, four times as many as Auntie's '6%'.

73,500 people (6.25%) passed the WCA and were placed in the Support Group.

Leaving 214,900 people (18.25%) left over. Auntie only missed 200,000+ people from the stats....

Those 214,900 people break down into:

188,300 people (16%) who passed the WCA and were placed in WRAG.

26,700 people (2.25%) who have assessments still in progress and have neither passed nor failed the WCA.

But it's even worse. Those aren't the final figure, they are the statistics before appeal. And the statistics for appeal are that 36% of people found fit for work appeal, and 39% of those succeed.

When you allow for appeals, 235,800 people (20%) have been placed in the WRAG and 77,100 people (7%) have been placed in Support Group, with only 407,300 people (35%) assessed as fit for work.

Disregard the withdrawn claims - Auntie talks about claims being 'considered' and withdrawn ones clearly aren't - and those still in progress to allow us to look only at the assessments that are complete, and we find that the percentages rise to 'Fit For Work': 56.5%, Support Group : 10.5%, WRAG: 32.5%.

So rather than Auntie's 6%, 43% of people who take the WCA actually pass it, 7 times as many as Auntie would have us believe.

You might think that I am being picky, that a careful reading gives most of the figures, that I'm interpreting the data in a different fashion to Auntie, but that isn't the point. Most people don't read articles like this carefully, they don't have the background to know when the figures given by a trusted, supposedly neutral, source are just plain wrong. The impression this article is going to give to most people reading it is that only 6% of ESA applicants are genuinely disabled, and that 94% are faking it or trying it on. I can flag up the flaws in the article, but the damage it does to us is impossible to undo.

Tuesday 10 May 2011

Hardest Hit Demo: Pros and Cons.

Tomorrow will see the Hardest Hit campaign against the cuts action in London. It is an opportunity to protest the cuts which will affect disabled people so devastatingly, and join together with other disabled activists.

If you can't make it to the march, for whatever reason, you can protest online and there is also a really good guide for writing to your MP.

Full details of the route, and frequently asked questions have been made available, and they have also created a flickr group, a twitter list and a facebook page, tuning in well to the influence of social media in recent protests and campaigns. Hardest Hit is also including lobbying MPs about the Welfare Reform Bill into the protest, which can also make a palpable difference to the situation of disabled people in Britain.

Hardest Hit has the potential to be a huge and important event for increasing visibility of the issues facing disabled people during these so-called 'times of austerity', and the involvement of several big charities may increase the likelihood of media interest. At a time when disabled people are being constantly vilified in the right-wing press, raising awareness of the issues we face could begin to change perceptions and increase support for disabled people in Britain.

The whole of the Where's the Benefit? is dedicated to talking about why the welfare cuts are not only demeaning but downright dangerous, and it would be wrong of us not to mention Hardest Hit. However, not everyone on the team, myself included, feel we can fully get behind the demonstration.

Some of the big charities and organisations involved in organising the Hardest Hit campaign are ones which, historically at least, have been a part of the oppression of disabled people. Disabled People Against Cuts have publicly withdrawn their support of the demo, saying,
Do we ignore the fact that organisations might be viewing disabled people as ‘helpless cripples’ so long as they are prepared to come out and oppose the cuts? We believe it is precisely because we are facing severe attacks upon our rights and lives at this moment in time that there is even more reason than ever to ensure that the messages we’re sending out and the actions we take are clear and work in the long term best interest of all disabled people. I make no apology for saying that DPAC refuses to “turn a blind eye” and betray certain groups of disabled people for some mythical “greater good”. Some may accuse us of cutting off our noses to spite our face or needlessly creating barriers where none exist, however, it is our view that it would be hypocritical of DPAC to speak of defending people’s rights, including the right to independent living and self-determination, if we gave a nod and a wink to anyone who is engaged in activity undermining these rights.
Other concerns involve the motives of the charities. Miss Dennis Queen writes,
When campaign success is going to happen you can count on these charities use their plentiful resources to to sweep in and be there to help government 'resolve' the anger, fear and penalties disabled people face. They get to sit at the table with Government and make sure THEIR business interests get served first, not the interests of disabled people. They take control of matters for government, claiming to be the people who represent disabled people and 'look after us' so nobody else need get bogged down in the detail.
A post I wrote last December talked about Disability Works UK, who were bidding for contracts to carry out the Government's compulsory back-to-work schemes. Disability Works UK is made up of 9 disability charities and organisations. 4 of these (Mind, Mencap, Scope and Leonard Cheshire Disability) are listed as supporters of Hardest Hit. I find it hard to understand how they can support a campaign against the cuts, while seeking to profit from the legislation that will result. Would we support a march organised by ATOS or A4e?

But the aspect which caused perhaps the most concern was the announcement that Maria Miller had been asked to speak. Maria Miller is the Minister for Disabled People, and she is fully behind the disability benefit cuts. She has, unsurprisingly, turned down the invitation to speak at Hardest Hit, but the fact that she was invited in the first place poses yet more questions about the motivations of the march's organisers.

There is always a fear that it is wrong for us to show disunity in public. Will people use that to discredit the movement as a whole, or the good done by parts of it? It's possible, but I also believe that we are doing ourselves a disservice if we do not speak up about what concerns and hurts us.

Where's the Benefit? are not endorsing the event, nor are we opposing it. We are here to report on and discuss issues to do with disability benefit cuts, and the Hardest Hit march is without doubt a part of this. Many disabled people are supporting it, and everyone hopes that it is a great success. We all want change, and for many, Hardest Hit is one step towards this. It is well organised, well publicised and could make a real difference. The potential differences in motives and structures are less important than the message, and the impact that this campaign could have. However, for other disabled people, it is more problematic, for all the reasons I have outlined above.

So for those of you who are participating, I hope it is fantastically successful. For those not, there are many other ways to protest the cuts. Keep reading here and take a look at DPAC's Week of Action against ATOS Origin, for a start.

(cross-posted at incurable hippie blog)

Monday 9 May 2011

News, Numbers and Nonsense

The news that mental health conditions are now the most common reason for somebody to be on incapacity benefits is only the latest in a great slew of statistics published lately about disability benefit which are being used to imply something far beyond their significance. Statistics only become news when they are seen to be interesting - usually when something is going dramatically up, or down.

In this case, the real story here is that the numbers of people with chronic back pain on Incapacity Benefit dropped by 50% between 1997 and 2007 - that's the newsworthy bit, that should be the headline. Not because it's good news, but because it indicates an actual change. And whilst the Occupational Therapists looking at the data couldn't see why they could be responsible for this change, I think it says positive things about workplace conditions - both that workers have been made less vulnerable to back injury and strain at work and after the introduction of DDA, workers with chronic back pain have rights to accommodation so many can carry on working. I'm sure there's also better advice from GPs, maybe other improvements in medical treatment too.

But no, the story is about mental illness, to imply that it is remarkable so many people should be incapacity benefit with mental illness. Only it's not very many at all.

One in four people in the UK will experience mental illness at some point in their lives. According to the article's statitistics (once we do some maths of our own) about one in two hundred and fifty of the country's population is currently incapacitated due to mental ill health.

The same sum is useful to apply to that obesity statistic published a few weeks back. The headline was that 80,000 people are on incapacity benefits because of alcoholism, drug addiction or obesity, but it was the smallest proportion of this group, people with obesity, that gained the attention. My Dad had heard the news and declared that 80,000 people incapacitated by obesity. The Mirror delighted in the imagery, “People who are too fat to work are biting a huge hole in the country’s finances, figures revealed yesterday.”

In fact, it was more like 1800 who were obese. Almost one in four of us is obese, but these figures mean that only one in thirty-five-thousand of us are actually incapacitated by obesity, making the “Loads of people are too fat to work” trope rather moot.

These statistics demonstrate that it is very rare for mental illness or obesity to lead to incapacity. Given that these conditions, along with chronic back pain (usually reported as “a bad back” in the press and usually in inverted commas), are common*, this should lead to empathy as opposed to dismissal.

I have had chronic back pain and mental illness and I have been obese. Had I not been chronically ill as it was, the back pain and mental illness would have lead to significant time off work but neither would have been bad enough for long enough to take me out of work. Despite that, my mental health experiences have been by far the worst experiences of my life, far worse than any level of pain I have experienced. My back pain was intensely painful, tremendously frustrating, very sensitive to emotional tension and presented a constant battle between the need for rest and the need for movement. So when I hear about people being incapacitated by mental ill health or “a bad back”, I have great sympathy – they have what I had but probably worse and definitely for much longer.

The obesity was only a problem to me because I had put on weight very quickly and felt very self-conscious about it, so goodness knows how much more severe a person's condition has to be before it stops them working. People who are incapacitated with obesity are significantly unwell. To carry that kind of weight in the first place, there must be an underlying physical or mental health problem - if someone actually eats their way to that size, they have an eating disorder as serious and dangerous as anorexia or bulimia.

But my sympathy is utterly irrelevant. The point is that someone has to experience a significant level of functional impairment in order to qualify for any disability benefits. Just because a condition is common doesn't mean that a minority of people don't get it very bad. Almost everyone has had the flu at some point in their lives, but that doesn't make it remarkable that a few thousand people who die of it each winter.

* Mental illness can of course be a hundred different things, including relatively rare conditions, but for these purposes all these mental ill health is lumped in together. I'm not going to go to great pains to make this clear because the whole matter of diagnostic labels and incapacity is problematic and plays into a hierarchy of disability.

Sunday 8 May 2011

Picnic and Party Against Atos - part 2: Reminder

A reminder that Benefit Claimants Fight Back's next protest against Atos is tomorrow:

As part of the National Week of Action Against Atos Origin, beginning on Monday 9th May, a second Party and Picnic against Atos will take place on the 9th May from 2pm at their Head Office in Triton square, near Euston.

Bring music, drums, banners, placards, food to share and brighten up the faceless corporate wasteland that is home to poverty pimps Atos Origin Ltd.

Musicians, poets, orators, ranters, shouters, all benefit claimants and supporters welcome. Please help spread the word, invite your friends and let's make this the biggest stand against poverty pimps Atos Origin so far.

Triton Square is on the North side of Euston Road, a minute or so from Warren Street tube and less than five minutes from Euston/Euston Square or Great Portland Street tube stations.

The Facebook event page is here. For more details of other events happening around the country during Claimants Fight Back's week of action against Atos have a look here.

I went to the last protest in Triton Square. It's actually a great and accessible place for a protest. There’s shelter if it rains or is too sunny, there’s things to sit on and there’s a couple of caf├ęs a few yards away for acquiring refreshments and using their loos.

Guardian journalist John Domokos will be there. He is very keen to attend and record a Work Capability Assessment test and a tribunal so would like to meet people who have one pending. He's also interested in speaking to people who've been through them already.

Hope to see you tomorrow!

Friday 6 May 2011

Press request

I received this Email from journalist Amandine Alexandre:

I work as a journalist in London for French media.

I am looking for testimonies on the Work Capacity Assessment for a piece which will be broadcasted on the French radio-station Europe 1 (www.europe1.fr) on Wednesday morning.

The idea is to talk to someone who has been put through this test and was found fit for work when, in reality, he/she is not capable of working.

I am looking for people based in London or not far from London.

If you are in or near London, have been through the WCA and deemed "fit for work" and would be willing to talk to Amandine her Email address is amandine.london@gmail.com.

Thursday 5 May 2011

Democracy, but only if you pay for it

Today The Telegraph's Ian Cowie has stooped to a spectacular low that makes the Daily Mail look all sunshine and rainbows. He proposed that only those who pay a minimum of £100 a year in income tax be allowed to vote.

Clearly the motivation behind this is to destroy the left wing vote. It will mean that those who typically vote left would be excluded from voting: The unemployed, the low-waged, full-time students, etc.

Of course, it would have a massive effect on us disabled people. Though Incapacity Benefit and ESA are "taxable" benefits, they're not enough per annum to pay income tax on!

He says:

Restoring the link between contributing to society and voting about how it is run would be a sensible first step.

So he thinks disabled people who volunteer for their local youth work charity aren't contributing to society? That people who care for a disabled loved one aren't giving back to the country they're claiming benefits from; despite saving the state £87bn a year? That the unemployed person who runs a Brownie pack is just scrounging and providing nothing in return?

Possibly his sickest claim of all is:

This modest proposal would, however, exclude large numbers of people who have no ‘skin in the game’ and who may even comprise the majority of voters in some metropolitan areas today. Their contribution is not just negative in financial terms – they take out more than they put in – but likely to be damaging to the decisions taken by democracies.

I compromise the majority of voters? What, by contributing to a site like this which exposes just how shafted disabled people are?

I have no "skin in the game"? Right, cos it's not like disabled people are dying because they lost their benefits; and who knows if at some point in the near-ish future that I'll lose my piddling income and find myself as one of them?

I'm damaging the decisions taken by democracies? What? By making sure people are aware of how those decisions will affect disabled people?

We have been voting ourselves better benefits than we have earned for decades and – sooner than later – that has got to stop.

On a micro scale; I'm sorry Mr Cowie that I was only able to pay income tax for 3 and a half years between starting work a week after finishing university in 2003 and becoming too ill to work at the end of 2006. No-one is sorrier than me because I miss the life I had back then. Having been on benefits now for 4 and a half years I've claimed back way more than I paid in. But that's the whole point of "national insurance". It's an insurance against life going tits up for you.

On a macro scale; Better benefits than we earn? Have you seen the rates of benefits? Imagine you became too ill to work. Permanently, not something that's only temporary until you have an operation. You apply for ESA and get turned down and shunted onto JSA. Could you, Mr Cowie, really live on £67.50 a week for life?

That’s how non-contributory democracy led to the credit crisis in a nutshell.

Really? As the "finance editor" for a national newspaper one would expect you to do a little more research than that, rather than just reading Iain Dickhead Smith's claims that benefit claimants caused the deficit. I think you'll find it was the bankers that crashed the economy and not us non-workers living on a pittance.

It’s time to restore the link between paying something into society and voting on decisions about how it is run.

No thanks Mr Cowie. I'd rather live in a country where the human right to be part of the decision-making process about what affects us is upheld. Even us filthy scum that can't pay income tax.

Tuesday 3 May 2011

#badd2011 Round-up post

Here's a collection of this year's Blogging Against Disablism Day posts that are about benefits or care funding in the UK.

Lets start with the 3 posts we hosted here on WtB. Firstly Goldfish - who organises and hosts BADD every year - posted a vlog about "people like me" (and with excellent outtakes including a fascination with ears). Then David wrote about integrity, honesty, objectivity and impartiality. The final WtB post for the day was mine on the subject of vulnerability and how the government keeps talking about how they want to protect the "most vulnerable" while actually creating vulnerability.

WtB writers also wrote about WtB-relevant issues on our own blogs. Kaliya used the characters and plotlines from the Harry Potter books as a metaphor for the political position in Britain today. David wrote about how politicians and newspapers picking on disabled benefits claimants has become socially acceptable. My personal post was mostly a self-indulgent whinge about how I can't get a girlfriend, but I do address how the benefits system, especially the plans for ESA, makes being with me an even less attractive prospect.

Crimson Crip looked at a similar issue to David, how disablism is starting at the top with politicians and media and filtering down through our society. Kethry used recent headlines about benefit claimants to assess the media's demonisation of disabled people.

Gaina looked at how non-disabled people are the ones making decisions about us, for example non-disabled people devised the WCA, and suggests we should be excluding non-disableds from the decision-making process.

Finally psychosis & soyabeans looked at the problems with ESA and their own fears about being reassessed.

There are hundreds of BADD posts this year, which is an excellent thing. But it does mean that I can't get around to reading all of them. If you have read, or if you wrote, a BADD post about benefits and care funding in the UK (or maybe even in another country, it might be interesting to compare systems) please do post the link in the comments section.

A Truth No Longer Fit for the BBC

Mark Easton, the BBC's Home Editor, posted a piece on his blog taking apart last week's DWP attack on us. It's a good, solid article with some actual journalism behind it, considerably better than most coverage out of the BBC in the past fortnight, and points out that the truth is something very considerably different to what the DWP's ministers are trying to have us believe.

But then we get to the comment column, which seems to have been lifted from the Daily Heil and is rife with disablist attacks on disabled benefit claimants. Now remember that the BBC is required to take action against disablism as part of its Public Sector Equality Duty, so surely there's something wrong here? Surely every disablist message is in flagrant breach of the house rules? There are also people like me fighting back, but when I posted a piece to show that Mark's article didn't go far enough, that the deliberate distortion of the truth was far greater than even he had assumed, it vanished into the mists of moderation, not just referred to their normal moderators, but booted up the stack to some sort of uber-moderation. And today they've decided it's 'defamatory' and wiped it entirely.

I talked about 'deliberate distortion of the truth' in the preceding paragraph, but the English language has a shorter term for it, we call it lying, and that's the term I used to sum up what Chris Grayling, the DWP, and Labour before them were doing. And that seems to be where the BBC has a problem. It's easy to demonstrate that the DWP press releases deliberately distort the truth and that they reflect Chris Grayling's deliberate attempts to mislead the public, because he's made exactly the same assaults on us verbally, and that means that my statements are no less than the truth and in the public interest, which therefore cannot be defamation. It is in fact exactly the same conclusion reached by Mark Easton's article. But Auntie Beeb is apparently scared to allow the logical conclusion of its own article to be stated aloud, just as it is scared to enforce its own obligation, both moral and legal, to take a stand against disablism.

So here's that truth that is no longer fit for the BBC, unedited and in my own words:

There's the start of a good article here. I say 'the start' because the reality is even more outrageous than Mark paints it and certainly bears little relation to the twisted 'facts' of the DWP's propaganda -- this is the second four day weekend in a row where they've launched an assault on disabled people, you might almost think they were scared of informed debate...

The truth is that I probably became one of those statistics for withdrawn claims last year. I'm disabled with several different spinal injuries and chronic pain syndrome (and maybe some other stuff -- disability is complicated). When I was finally made redundant, after 4 years of fighting to keep my job and taking my ex-employer to an Employment Tribunal for disability discrimination, I tried claiming JSA, but JCP can't cope with you if you're disabled, can't cope with you if you're highly qualified and god help you if you're both. So in the end, after complaints to ministerial level and abject apologies, JCP asked me to move to ESA.

So I put in my application and laboured through the massive ESA50 form, taking about 9 hours to complete it, and that for someone with considerable writing skills and the ability to explain themselves concisely and clearly. Then came the ATOS WCA assessment. ATOS had been warned in advance that I needed an adjustable chair to have any hope of getting through the assessment, inability to sit for any time, or stand, or sometimes even lie down without severe pain being at the core of my disability, my inability to work and therefore my entire claim. No chair. So we abandoned the assessment at the cost of a wasted trip and considerable pain. But the pain continued to increase even after I got home and I spent the next week not knowing even what day it was, the months after wandering around in a daze from the doubled level of painkillers. In the meantime ATOS called me in for another assessment, but it was months before I was well enough to catch up with my mail and only on receiving a letter four months later telling me my claim had been cancelled was I able to chase through the system and find that ATOS had told DWP I had failed to attend the WCA, carefully omitting to mention their failure to provide the required reasonable adjustment.

Common sense prevailed, with the definite sense from DWP of 'God, not another ATOS cock-up!', and my claim was reinstated. My second WCA was barely better than the first -- the details can be read on Where's the Benefit -- but the ultimate result was that I was placed in the ESA WRAG as clearly not currently fit for work.

And yet for several months, possibly even to this day depending on how the reinstated claim was handled, I would have been one of those statistics for withdrawn claims, supposed evidence of fraudulent intent. It was only my bullheadedness and refusal to give up that got me through, ATOS threw every obstable in my path, and for many disabled people, physically disabled as well as mental, the sheer stress of a claim, the utter contempt for disabled people visible in inaccessible forms, inaccessible centres and the contemptuous manner of the medical professionals will result in claims being withdrawn by people with every right to be placed in the WRAG or even the Support Group.

On top of the claims withdrawn due to the stress placed on claimants, we then need to add those JSA claimants parked onto ESA for a week or two because they are temporarily unable to look for work due to illness, even if they're expected to recover long before the assessment, and certainly not to pass the assessment if their illness lasts that long. Or people in employment who have exhausted SSP but will soon recover. Or people with genuine claims who unexpectedly improve. Or people made redundant for narrowly specific medical reasons, say being medically unfit to hold a PSV license, who are required to file for ESA rather than JSA, even with a disability so narrow that they are guaranteed to fail the WCA, even though there's a good chance of them finding another job before the assessment and withdrawing their claim.

The numbers of withdrawn claims aren't evidence of people attempting to defraud the system, that's Chris Grayling and the DWP (and Labour before them) deliberately lying in order to mislead you. The numbers of withdrawn claims are in fact evidence of the system working precisely as designed. The evidence for this is readily accessible, on disability sides, charity sites, advocacy sites, but the Tory Rags, and now it seems the BBC as well, can't be bothered to do basic research and just run with Grayling's hate-filled spite.

Mark is an honourable exception (though needs to dig a little deeper), but when did journalists lose the ability to do basic research and turn into government propaganda mouthpieces?

Monday 2 May 2011

The GMC, ATOS and Duty of Care

It's a little late, but I've just come across something to give ATOS's hired guns a moment to pause while counting their thirty pieces of silver.

When Doctor Margaret McCartney questioned in the BMJ whether doctors could work for ATOS and remain true to their professional ethics and responsibilities, another doctor (worryingly a tribunal member) suggested in comments that ATOS quacks were not subject to their normal duty of care as the nature of their work is not a doctor-patient interaction. This is particularly alarming as it is an interpretation of professionalism that isn't true of other professions (or English law), as an engineer I have a legal duty of care greater than that of the man in the street any time I work as an an engineer in any way, shape or form. The GMC Standards and Fitness to Practise Directorate have now issued guidance that the argument made in the comment is not correct, that ATOS assessments are a doctor-patient interaction and that doctors have to make the interests of their patients their first concern at all times. Interestingly they also find it necessary to remind doctors that "Being open and honest and acting with integrity is also an essential part of medical professionalism."

Now this ruling doesn't extend to physios or nurses as the GMC is not their professional body, however they are subject to the same legal duty of care requirements as any other professional and it would clearly be untenable for their professional bodies to try and argue that their members are not subject to a duty of care in circumstances where the GMC has ruled that its members are and where all three professions are theoretically considered fit to practise. Equally Dr McCartney has pointed out in her blog that the professional standards for both nurses and physios contain identical requirements to place the care of the patient first at all times.

Sunday 1 May 2011

#badd2011 Vulnerability

The government keep banging on about how benefit reforms will still see the "most vulnerable" supported.

But what do they mean by "vulnerable"? Innately I don't think of myself as vulnerable, I'm confident and articulate enough to stand up for myself (metaphorically at least). Despite my brittle bones I've stepped into the middle of a physical fight to break it up on many an occasion because I felt the benefits of doing so outweighed any "vulnerability" on my part. (And for the record it's never resulted in me getting punched. Something about people not wanting to hit a speccy disabled girl.)

But this government, with their cuts and their propaganda, are making me vulnerable.

Is this disablism though? Abso-bleeding-lutely when so many of the cuts and so much of the hate is aimed at us.

I'm vulnerable because I'm facing a future with no income because the DWP keep deciding ill people are allegedly "fit for work". If I end up losing everything how can I go on living? Other disabled people have already killed themselves because they lost their income. I'm not suicidal at the moment, I have no reason to be. But I'm vulnerable to finding myself suicidal in the near future because of the government.

Lets imagine I do get to keep my income replacement benefit (currently IB, soon to be ESA) and housing benefit. I'm still at risk of losing my Disability Living Allowance. DLA is a benefit paid to cover some of the extra costs of being disabled. Without my DLA I won't be able to shop to get food in. I currently have a Motability car, which I will lose if I'm one of the 1 in 5 DLA claimants who'll lose their money. I know some people who don't/can't drive who use their DLA to pay for online supermarket deliveries, without my DLA that'll be out of my price range. So I'm vulnerable to, you know, starvation thanks to the government's disablist cuts.

Then there's care funding. At the moment I don't get direct payments. I've toyed with the idea of applying but because there's so much paperwork involved it's less work to just struggle with domestic tasks myself and then guzzle painkillers in a House-esque fashion afterwards. As I smash up more joints that balance will change and I'll eventually pass the tipping point where the paperwork will become the easier of the two options. I used to live in one of the few local authorities in the country that provided care packages for people assessed as having less than "substantial" needs. Not any more. It's one of the things that got cut in my local council's budget this year. So if I sustain an injury (likely what with having brittle bones) I'm vulnerable to getting completely stuck and being unable to manage simple things like cooking because the council won't give me any assistance.

Thanks to the propaganda we see daily in papers like the Daily Mail and Express - encouraged by the government with their "scrounger" rhetoric and DWP press releases filled with half truths - I'm now more vulnerable to hate crime and being falsely accused of benefit fraud.

These brutal, unnecessary, unfair and disablist cuts are creating a raft of vulnerable people like me. People who are only vulnerable because of this government's actions.

If they truly cared about protecting us they wouldn't have put us in this position in the first place.

#BADD2011 Integrity, Honesty, Objectivity, Impartiality

Today is Blogging Against Disablism Day, when bloggers around the world get together to blog against the disablism that makes life so unnecessarily difficult for disabled people. Sadly, this year those of us in the UK are operating in a target-rich environment, able to turn our focus on not just individuals and the odd organisation, but media en masse, the Civil Service, politicians, and, most notably, our Prime Minister, David Cameron.

That Cameron’s government is hostile to disabled people is no great revelation, we have been subject to a string of bigoted press releases from the Department of Work and Pensions under his henchman, Chris Grayling, ever since they got into power. The structure of the press releases: data without context, damning headlines that are all too easily shown to be false; even their timing, the last two immediately before four-day weekends to prevent any organised response or reasoned debate, all too readily betray the deliberate intent to smear disabled benefit claimants, and all disabled people alongside them, as feckless scroungers, swinging the lead to avoid working a single real day in their lives. That the Tory Rags should run so eagerly with the ‘story’ isn’t surprising, after all their core readership of Little-Englanders aren’t happy without a minority to hate, but lately even the BBC seems to be falling for the government line. There are scores of analyses out there of the data and the twisted way that the press releases are put together, several of us here on WTB have taken them apart, so have other disabled campaigners, charities, advocacy groups and so on. A journalist wouldn’t even have to exert themselves, the story of the government distorting facts to demonise a minority will put itself together all too readily, but no, Auntie Beeb is reduced to recycling disablist government propaganda, hateful, twisted headlines and all. When did the BBC forget how to do basic research?

Now to a (minute!) degree we can excuse this kind of behaviour from Cameron and Grayling, they’re modern politicians, what the Romans might have considered infames, persons of low moral character, just like pimps and those who ran stables of gladiators, who can’t be expected to aspire to the same standards of behaviour as decent, respectable folk. But Cameron and Grayling aren’t putting out the press releases from the DWP on their own, they are helped in their bigotry by full-time Civil Servants who put together the data, the misleading interpretations, and the twisted headlines for them; who carefully see to it that the Press Releases don’t include the context necessary to understand what the figures really mean and the failures in government policy that they reveal. Civil Servants aren’t supposed to lower themselves to the standards of their ministers, the Civil Service code binds them to a standard of behaviour and restricts their ability to engage in party political behaviour on behalf of their minister, or others, or themselves. That code is summed up in four words: Integrity, Honesty, Objectivity, Impartiality.

The truth is that the disablist press releases began before the Con-Dem government came into power, and that DWP policy has actually remained consistent across two different governments; pushing ESA as the solution to all ills and painting those on IB as deliberate fraudsters outwitting the system with fake disabilities. The reality of ESA’s failure, its harsh descriptors that deliberately and calculatedly fail to account for the reality of many disabilities - to the point that even some the ‘health care practitioners’ who have sold their professional integrity for 30 pieces of silver have complained it is almost impossible for them to score people with cancer or MS as anything other than fit to work, the parody of fairness that is the ATOS-operated WCA, the ludicrous surreality of the access-all-areas ‘imaginary wheelchair’, all are carefully whitewashed out of the picture presented in DWP press-releases. So we have to conclude that there is a cadre of DWP personnel who aren’t just working on these press-releases because they have been told to, but who have actively bought into the ESA and WCA ‘reforms’ and are working to drive them on, no matter who they have to mislead and no matter how many facts they have to twist to do that. And yet these are Civil Servants, subject to the Civil Service Code. Do their actions display Integrity? Well, no, because they’re displaying deliberate deceit. Honesty? No, deliberate falsehoods don’t really count as honest. Objectivity? No, the truth about ESA is there to be seen, but they are busy sweeping that under their subjective carpet, eyes blinded by their own particular interpretation of what is best for the country (and disabled benefit claimants be damned). Impartiality? Well, they are following the same path under two different governments, but that path isn’t one a reasonable person would consider impartial, in fact they might consider it to be very partial indeed. So there we have it, not for DWP civil servants Integrity, Honesty, Objectivity, Impartiality, but Deceit, Falsehood, Subjectivity and Partiality.

No, it’s not good enough and someone needs to sweep out this nest of vipers from the core of disability policy. But, and it’s an awfully big, elephant in the corner kind of but, the Prime Minister, Chris Grayling, the DWP and the media couldn’t get away with this kind of behaviour if they knew that they were operating in a society hostile to disablism. Yet there they go, stabbing us in the back at every chance, actively convincing people that we are legitimate targets for their bigotry. What does that say about our society? What does it say about what is wrong with our society?