Need the Loo? Book a Time Slot.

No sooner have the Supreme Court finished shaming each and every one of us by ruling that Kensington and Chelsea Council (representing by far the richest borough in the country, with 1 in 6 earning over £60K p/a) are fully entitled to tell a disabled elderly woman that she should just wet herself rather than provide her with the support to use the toilet during the night that her disability requires, than The Scotsman reports that a supported living complex in Aberdeen has started telling its residents that if they need staff help to get to the bathroom then they will have to schedule it on a roster and that when residents questioned this new regime they were told to 'train their bowels'. Social Care and Social Work Improvement Scotland have launched an urgent inquiry, but are the stormcrows of the Supreme Court's precedent-setting decision already coming home to roost at the heart of Cameron's Big Society? And if we need to pre-book our slot to go to the toilet then is it the Big Society, or the Big Brother Society?

If managers at the heart of a private company, intent only on reaping maximum profit from those whose disabilities force them into dependence on their care; or councillors at the heart of a local authority, intent only on shaving the maximum possible savings from a constituency who lack the political capital to threaten them at the ballot box; feel able to so cavalierly dismiss our rights to human dignity and respect in favour of what is tantamount to abuse, then are they really any morally different to the thugs who physically abused the residents of Winterbourne View? Dousing someone with learning disabilities in cold water, insisting that a disabled, elderly lady wet herself for your convenience, are the ethical issues really so different? And if the motive for the abuse is not the personal inadequacy of the bullies amongst us, but the cold, hard, bottom line of personal profit, then isn't the failure of personal ethics actually far, far worse.

And if the highest court in the land supports these abusers in their actions, then how can we have any respect for the judiciary? The purpose of law is to encode a system of ethics, the purpose of the judiciary is to protect and defend that system, not connive at its systematic erosion.

Picklesgate: How Many DWP Ministers Have Lied to the House?

The revelation of Eric Pickles' January letter to the PM expecting 40,000 homeless families as a result of benefit caps and housing benefit changes looks like touching off a row in the Commons as to whether Tory ministers have been systematically lying to Parliament.

An article in the Guardian identifies a DWP report in February and statements in the House by Chris Grayling (Welfare Minister), Grant Shapps (Housing Minister), Maria Miller (Minister for Patronising Disabled People) as all stating that it is either impossible to quantify the number of affected households or that the problem will not get worse. Yet Eric Pickles' Community Department delivered precisely that quantification of the problem into the Prime Minister's hands in January.

Labour are expected to try and force an urgent question on the issue in Parliament today.

According to the DWP it does not accept the figures in the letter and "There might be some people who have to move to a less expensive area. But that doesn't mean they won't have anywhere to live. We are very optimistic about the behavioural change that this will bring about" Behavioural change? That would be us mere plebs not expecting to be able to continue living near right-thinking, posh Tory voters then?

The DWP spokesperson also said "We cannot carry on with a situation where people on benefits can receive more in welfare payments than hard-working families" But what if those people on benefits need that amount of money simply to survive while supporting family members with complex needs?

Benefits Cap to Make 40,000 Families Homeless

...And Cost More than it Saves

According to a story in the Observer and picked up by the BBC, Eric Pickles' department warned No.10 in a letter from Eric Pickles' Private Secretary to David Cameron's Private Secretary (the standard method for a minister to draw something to the PM's attention) that the £500/week benefits cap would result in 40,000 families being made homeless and cost more than it saves.

Of the families made homeless, 20,000 will result directly from the cap, while 20,000 will result from related changes to the rates of housing benefit.

The letter claimed the supposed savings of £270m would be more than wiped out by the increased cost of caring for newly homeless families and generate a net loss, while 23,000 of the 56,000 affordable homes the government wants built by 2015 will not be built at all because it will be impossible for the builders to recoup their costs, and that this will primarily affect family homes.

The letter was apparently sent in January, casting doubt on Chris Grayling's claim before parliament last month, in respect to families being made homeless by the benefits cap, that "It is not yet clear to what extent they would be affected by the overall benefit cap."

In confirmation of the effects of the changes, Westminster Council announced on Friday that 81% of the families on housing benefit in the Borough, more than 5,000 households, were at risk of being made homeless, because rental rates in the borough require housing benefit payments in excess of the revised housing benefit cap, with most seeing a cut of £84 to £130/week, and nearly 1 in 8 seeing a cut of more than £300/week . The Tories are naively hoping that landlords will accept lower rents -- yeah, right.

80% of landlords surveyed by Westminster Council said they would rather end the tenancy than lower rents. The council's own figures show that 4,000 children would have to leave the borough and change schools (so school closures to come, I suspect), half the children on the council's At Risk register would be forced out of the borough. 300+ pensioners, 95 of them with serious health concerns, and 61 disabled people will be similarly affected.

The council warns it could be forced to find £18m in order to temporarily house 1,500+ families from next January, but in 2013 the benefits cap is extended to temporary housing and the only alternative would be to move the families affected entirely out of the borough. The report cheerily predicts that within 3 years, homelessness won't be a problem in Westminster, because it will all have been packed off to become the problem of the outer London boroughs.

Boris Johnson was widely reported to have warned that this policy would amount to the 'Kosovo-style ethnic cleansing' of London social housing, but, reassuringly for those of us whose worlds would be shaken by a Boris with a social conscience and a line in incisive social commentary, he was misquoted, is in agreement with government policy and insists that it will not result in social-cleansing and that 'no such exodus will take place on my watch'. Westminster Council would appear to be putting one of his assertions to the sword and the other to the test.

Westminster will be one of the worst affected boroughs, but other inner-city boroughs are likely to see similar effects, and all boroughs will be affected to some degree. Now take Westminster's 5,000+ and extrapolate those effects across the entire country....

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.

#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?

People Like Me #badd2011

Please click the "CC" button at the bottom right of the frame for subtitles / captions.

This is my vlog for Blogging Against Disablism Day 2011. It's not terribly articulate but I was rather tired and nervous.

Filmed and edited by Stephen.

Labour: Still in Denial

I’ve been struck by several related issues over the past week.

First David Cameron launches a hate-filled attack on disabled benefit claimants – the Prime Minister of the country openly advocating bigotry on national news – and the best Labour can manage is Stephen Timms, Shadow Minister for Employment, wetly agreeing with him that maybe people whose disabilities leave them subject to addictions or obesity don’t deserve benefits. I’m sorry, did I hear that right, a Labour politician endorsing deliberate and calculated advocacy of discrimination against disabled people by the Con-Dem Prime Minister, discrimination that will inevitably spill over to affect all disabled people, obese or not, benefit claimant or not, in direct contravention of the Equality Act and the UN Convention on the Rights of Disabled People? So you would assume there would be a double outcry from Labour, Ed Milliband staking Cameron through the heart for his bigotry at Prime Minister’s Questions while Timms is rapidly stripped of the Whip and expelled from the Party. But no, nothing.

Now Neil Coyle, Labour councillor and Policy Director of the Disability Alliance, has published a piece at Left Foot Forward, which, while pointing out deliberate distortions in DWP press releases, goes out of its way to endorse ESA, and therefore the WCA, as responsible Labour policies working for the betterment of disabled people. I’m sorry, I must have missed the moment I slipped into an alternate reality….

It’s truly sad to see Labour still claiming that ESA was a positive move for disabled people, whereas the truth is that they, not the Con-Dems, designed the ESA system to deliberately distort the assessment process and force genuinely disabled people out of the disability benefits system and onto the harsher, uncaring, disability-hostile JSA — been there, done that, had to complain to ministerial level just to get JCP to acknowledge my disability. Talk to individual disabled people and they will tell you of their genuine fear of ESA and describe the horrific abuse of the WCA system by ATOS and their tame quacks.

This isn’t a new Con-Dem plot, it is the system working as Labour designed it. Deliberate demonisation of disabled benefit claimants by DWP press-releases coordinating hate-ridden tabloid vitriol didn’t start under the Con-Dems, these press releases have been happening for several years now and disabled people were expressing their concern while Labour were still in power. The farcical plans for WCA and DLA assessments based on an access-all-areas imaginary wheelchair (yes, really!) aren’t something the Con-Dems dreamed up since coming into office, this is another Labour policy idea they are implementing to the detriment of disabled people. And while individual disabled people are banding together in groups like DPAC, Broken of Britain and WTB to fight for their right to be treated as equals and for the system to recognise and cater for the reality of their disabilities, Ed Milliband sits on his hands and does nothing for us beyond occasionally quietly admitting that he agrees with Con-Dem policy on the matter — the betrayal of disabled people by Labour is absolute.

If the Policy Director of the Disability Alliance truly believes that ESA is a positive step for disabled people then it is time for him to resign, because he has forsaken any claim to understanding how disabled people are being affected, to believing in ‘Nothing For Us, Without Us’ and has betrayed the confidence of disabled people in his ability to place their needs above party-political allegiance, and the same can be said for Labour as a whole.

Where is the party that is supposed to stand for everyman, to fight for real equality, to ensure a system that is fair for all regardless of class, creed, colour or disability? Is it sleeping, licking its wounds, is it sacrificing us for the electoral expediency of a good headline about people suffering under the Con-Dems, or is the unpalatable truth that Labour is just as actively disablist as the Con-Dems?

Deserving

A lot of hoo-ha in the UK press at the moment about disability benefits. The essence of the story is that the government reckon 80,000 claimants who have what they consider "immoral" illnesses like drug/alcohol dependency or obesity are a justification for their plans to chuck about 570,000 genuine claimants off the disability benefits on which they depend.

According to the BBC article, the Prime Minister's position is thus:

The prime minister denied the government was stigmatising people who were genuinely ill but said the public believed recipients should be "people who are incapacitated through no fault of their own".

No fault of their own, what a strange concept. Does the man intend to start assessing not only the practical limitations of a person's condition, but also the degree of fault involved?

He continues:

"But there are some who are on these benefits who do not deserve them and frankly we are not doing our job looking after taxpayers' money if we do not try and make sure these people go to work."

Benefits are not given based on being deserving. They are given based on need. Going to work or not isn't based on being deserving. It's based on ability. An idiot who drove while high/drunk/ill/tired and smashed up his car and his head so badly that neither will ever function again is probably not considered very "deserving", but his needs will be pretty high and he's unlikely to work again. A young fireman who lost a leg while saving a helpless baby from a burning building is about as deserving as they come, but his needs, while substantial, will be easier to adapt for, and with a relatively small amount of equipment and support the chances are he will be able to do some work.

I wonder... if someone were declared Fit For Work despite a serious health condition, and in the course of making the effort to keep up with the Mandatory Work Related Activity requirement of JSA, their condition permanently worsened to the point where even the DWP and ATOS accept that they are too ill to work - would it be their fault for not saying "I can't do this," and risking having their JSA stopped?

Even taking the sort of example that I think the government mean, it's worrying. Let's imagine, for a moment, that we have a claimant, an alcoholic, and that his alcohol dependency didn't evolve as self-medication for a pre-existing but untreated mental health condition. Let's accept the government assumption that he really did skip gleefully out of the careers office at school saying "I've got a better idea, I'll get pished and the taxpayer will take care of me, bwahahahahaha!" Fixed this in your head? Good.

Now we're twenty years down the line, he has no friends and family left apart from other alcoholics, no work history, very few self-care skills, and all the physical and mental effects of long term alcohol abuse, which if you're not too squeamish you can look up for yourself. There are very few jobs that such a person could do, and even fewer employers who would take such a person on. Then what happens?

Cameron's despicable lie is that his ideal outcome involves people with dependency issues being treated and then helped to find jobs. That will never happen. It is far too expensive, and without wishing to sound defeatist, in many cases it's an impossible outcome.

We could put him into a treatment programme - one that isn't dependent on turning up sober (unlikely), and that won't send him back to his bedsit and alcoholic pals to undo all the work that has been done (so we're looking at an open-ended residential placement - unlikely, and extremely expensive). Then once he's sober, he'll be allowed to access NHS treatment for the underlying mental health conditions that will have developed (unlikely and expensive) and the physical damage as well (amazingly expensive). We'll have to hope that during those years - yes, years - the DWP don't choose him as an easy target and put him under so much pressure that he cracks and starts drinking again. Eventually, after many years of intensive treatment, a lot of money, even more hard work, and a dollop of luck on the side, he might be able to re-enter some sort of employment for a few years until he (a) retires, (b) dies of the irreversible physical damage, or (c) falls off the wagon again.

Cynically speaking, and please don't think I'm advocating this, it is in fact cheaper to allow him to quietly drink himself into an early grave without intervention.

Cameron might talk up "treatment" and "employment" but until we see actions to that effect - boosting rather than cutting the support projects* - what he really means by "getting people off disability benefits," is saving money by consigning them to the lower unemployment benefits.

The benefits system is supposed to be the last safety net. It does not provide a luxury lifestyle, it doesn't try to improve matters, it merely attempts to go towards providing what has been defined as the minimum amount of support necessary for that person to live in conditions that can be considered acceptable for a human being. Reducing that support does not propel people into sustainable jobs, it just makes their lives more difficult and in many cases perpetuates their problems, or in a few very sad cases, hastens their deaths.

*Yes, the article speaks of a £580m investment. However, this is from "private and voluntary organisations", eg not the government, and frankly it's a drop in the ocean compared to the cost of effective long-term treatment and support for that many addicts.

Cross-posted to This Is My Blog.

On being on benefits while fat

[Image is a vintage food advertisement from 1895. There is a drawing of a young woman with package of Loring's Fat-Ten-U food tablets and package of Loring's Corpula, a fat-producing food. The text says, "Get Fat on Lorings Fat-Ten-U and Corpula Foods".]

David Cameron today has said that taxpayers [feel that incapacity benefit] recipients should be "people who are incapacitated through no fault of their own", that is, not those who are ill because of alcohol or drugs, or because they are overweight.

According to these statistics, the number of people who claim disability benefits because they are obese, is 1,830. Compare this to 398,700 who claim for depression. It is hardly a raging epidemic. There may, equally, be other people who claim benefits for a particular impairment, while also being obese, and this is a whole other matter entirely. Yet here we have a new message of hatred from the government.

I am on benefits and I am fat. I am not on benefits because I am fat, but I am on benefits because I am ill, and I am fat because I am ill. This is many layered, but before I was ill, I was slim. Too thin for a good while, in fact.

Then I started taking psychiatric medication. The more common antidepressants didn't affect my weight, but when I started taking neuroleptic medication the weight piled on. At the time, Olanzapine was the 'wonder-drug' of choice by many psychiatrists, and I was put on it at a time when a lot of other mental health service users were. We all gained a significant amount of weight, very quickly.

I'm not on olanzapine any more, but I take other neuroleptics and a newer antidepressant, both of which have the same effect on weight. I have, at times, wondered whether I should come off them, to lose some weight, but I made a choice to do all that I could to prevent big relapses, and stayed on the tablets. Believe me, I would be costing the state a lot more if I came off all my meds and lost some weight, but spiralled into a paranoid psychosis at the same time.

These days I also have the added issue of more limited mobility, which means that I often can't do any kind of exercise. Many disabled people face this same situation, and many disabled people take medications which can cause their weight to rise - not just psychiatric meds, but steroids, certain painkillers and all sorts of others can affect appetite and weight.

And if I can't stand up for long enough to cook, or manage to chop vegetables or stand near the stove, then I also can't eat well. If I can't go out to buy fresh food, or can't carry anything home, it is virtually impossible to eat a healthy, balanced diet.

Now, I don't have a problem with what my weight is. It is how it is, I don't hate it, it's just life. I don't claim benefits because of my weight, but if I wasn't ill or disabled I probably would weigh less. However, I am, and it's a small price to pay for relative mental stability (very relative!).

But because of Cameron today, as well as benefit claimants being written off as lazy, scroungers, liars, exaggeraters and malingerers, the Daily Mail readers of the world will be happy to assume that every overweight person on benefits is on benefits because they are overweight.

I don't have a problem with those who are, by the way, but there are many fat disabled people, just like there are many fat non-disabled people. But those who are believing the hype now have an extra line of attack against the country's benefit recipients. An extra line of abuse for us to receive.

(The image is in the public domain, and was made available by Chuck Coker. This blog post is cross-posted at incurable hippie blog).

The Prime Minister's Instructions "You Have To Make The Fight"

Prime Minister David Cameron claims parents of 6 year old Dylan Scothern have to 'make the fight' to have his speech therapy reinstated. Dylan’s speech therapy was originally removed because he was ‘too old’

This order comes right from the top. All of us facing cuts to care services, DLA, ILF, ESA and a myriad of other benefits, supports and services for disabled people now have instructions directly from the prime minister as to how to respond.

Speaking during wednesday’s PMQ’s the Prime Minister said: "You have to make the fight" as a flippant response to the MP of the family of a Nottinghamshire boy with autism who faces his speech therapy being withdrawn.

The prime minister continued: "I know as a parent how incredibly tough it is sometimes to get what your family needs." This from a man whose inherited wealth means that he has never had to fight the fights of ordinary people in his life - he could simply ‘show them the money’ and enable himself and his family to get what they needed.

But perhaps the PM is right. The Broken of Britain and Where's The Benefit are concerned about the cuts faced by disabled people. David Cameron himself is urging us to "make the fight". So remember, you heard it here, direct from the top. The Prime Minister has issued his instructions to us all.

Let's fight then, and win.

By Kaliya Franklin and Rhydian Fon James

Whose care is it anyway?

Like most of the country, the Riven and Celyn Vincent case has taken up a considerable amount of space in my brain this week. Thing is, I seem to be concerned with very different elements of the case to the majority of the population.

The press coverage of the story has weighed quite heavily on my mind. Most news outlets are referring to it as the "Riven Vincent case." Celyn, the disabled person in need of a care package, doesn't usually get a name check until paragraph three; as though she's an unimportant afterthought in the story. In fact I'd bet that the majority of people who've seen/read the story probably don't even remember Celyn's name, only that of her mother. Sure the articles all come with a photo of her so people might remember that she's an absolutely beautiful girl with adorable ginger curly hair, but the photos are captioned "Riven Vincent's daughter" rather than "Celyn Vincent".

There are thousands of disabled people in the UK, both children and adults, with inadequate assistance packages. No-one wants to hear those stories. It's only when a non-disabled mother reaches snapping point that it's national news. It reminds me of how the story of Francecca Hardwick and her mum is usually referred to as the "Fiona Pilkington case". Disablist hate crime has killed many, many people over the years and none of those stories have come to the forefront of public consciousness. So why did that case? My theory is that, for the first time, disablist hate crime was responsible for the death of a non-disabled person.

And so it is with Celyn and her mum. Disabled people up and down the country are forced to sit in a puddle of their own piss for the best part of a day until their carer comes in for 15 minutes at bedtime to help them change; and inadequate social care is not a national scandal. A mother reaches snapping point and people are, rightfully, horrified.

One of my friends said "But at least there's a story involving social care cuts that the public is getting behind. It's something, and a step forward." I, however, wonder if it is a step forward or if the story is actually going to prove advantageous for disabled children and their parents at the expense of the social care of disabled adults.

I'm not for a second suggesting that support for disabled children should go out the window in favour of support for disabled adults. Not only do I think that everyone should have their support needs met, but once upon a time I was a disabled child myself so I understand that in some respects a disabled child's social care needs can be more complex and costly than those of an adult. A really good example is wheelchair provision; as a child I needed new wheelchairs much more frequently than I do now because I was growing.

I think there's a very real risk that with so much attention being directed at children's social care packages at the moment that more cuts will be aimed at adult services to preserve the funding for assistance of children and their parents.

David Cameron said that "he did not believe the case was connected to public service cuts." And as the Vincents have always had 6 hours a week assistance and that hasn't gone down, he was probably telling the truth. But if he wants disabled children and their families to have more help while his buddy Osborne is cutting local authority budgets, where is that money for the extra help going to come from if the money isn't being taken from adult social care to pay for child social care?

We have to remember that in the run up to the election Cameron kept on saying that he wanted life to be simpler for the parents of disabled children. He never, ever, even once, expressed any interest in or concern for disabled people over the age of 16. So I really don't think I'm just being cynical when I expect him to hang disabled adults out to dry.

I really hope Celyn Vincent gets a care package that will allow her to be an equal in her family, rather than just a stressor. I want to see all disabled children get the assistance they need to be a "normal" part of family life. I want to see all disabled parents have the help they need for their child to not be a carer. I want elderly people to not have to sit in their own incontinence for 12 hours. I'd quite like someone to help me with the more painful aspects of housework rather than having to look at my filthy floor wondering how much longer I can get away with not hoovering. I'd also very much like to be proved wrong and for the current focus on children's care to not have the end result of making life harder for over 16s.

System "not acceptable", says Prime Minister

System "not acceptable", says Prime Minister

In the last few months we have seen an onslaught of cuts, reforms, and changes in every aspect of our society. Disabled people have borne the particular brunt as in many cases, the schemes and funding being withdrawn from us is not so much about quality of life, as about the absolute basics of life.

Taxicard schemes are being axed, making essential journeys around town prohibitively expensive for disabled people who cannot drive or use buses. Access to Work faces severe restrictions, making it more difficult for us to enter or continue in employment. Mobility Allowance is being withdrawn from people who live in care homes which in some cases means there's no funding for wheelchairs.

But now, finally, a topic has been breached where Prime Minister David Cameron feels strongly enough to speak out. He has boldly gone on the record as stating that certain current recently-reformed arrangements devised for minimising fraud and ensuring the proper expenditure of public money are "not acceptable." He has said that he recognises that the system has "caused a lot of pain and difficulty" and has pledged to make changes to rectify this.

Given some of the cuts we've heard about, what pain, what difficulty, what kind of travesty would cause the Prime Minister to speak out like this? Is it the introduction of a new "extra-critical" eligibility threshold for Social Services assistance in Birmingham? The way the Independent Living Fund has been closed to new applicants and is set to shut down altogether in the next five years? The fact that even the creator of ESA believes that the test is not fit for purpose?

Don't be silly. It's the Independent Parliamentary Standards Authority (IPSA) who oversee MP's expenses. Prior to these changes, MPs were allowed to self-certify their expenses, with results that we all remember well. Now, there are increased restrictions on the sorts of things that may be claimed for, and a single standardised system for submitting claims.

The National Audit Office (NAO) have stated that £13.9 million of expenses claims have not been validated because they were unable to inspect any supporting documentation. A familiar refrain is that MPs (and, presumably, their secretaries) are finding the claims process too difficult. This article from June has an absolutely beautiful collection of whinging hyperbole from MPs who have surely never seen the administrative tangle that the average disabled person is expected to efficiently handle.

At least Mr Cameron and his colleagues are clear where their priorities lie.




With thanks to Mary for this guest post