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.

Amateur Atos Assessors

Please note that this post isn't meant to be a dig at any of the individual people I've had this conversation with, it's a comment on the social situation when everybody feels the conversation is appropriate. So if you know me IRL and have had this conversation with me: I'm not being mean about you personally; I promise.

I've had a bit of a weird weekend. Quite impressively my health held up for 3 consecutive days; usually a sure fire way to guarantee to be ill on any particular day is to make plans to do something. I've had a lovely time, I've hung out with old friends, met some excellent new people, and consumed more cream cakes than I can count.

The weird bit about the weekend was the number of people that called me "intelligent". It's a little bit weird because I'm really not that smart. I think I just talk a lot and with that many words coming out some of them are bound to be a bit clever; and people remember the smart stuff and not "I just spilt orange juice down my own back." (A tip for the hypermobiles: Just because you're flexible enough to pick up the glass of orange juice on the shelf behind you without turning round to look at it doesn't mean it's a good idea.)

The other weird thing about being repeatedly called "intelligent" this weekend is that in daily life I constantly have it implied that I'm not at all. I'm not talking about that common stereotype that people with physical impairments must also have a cognitive impairment, I'm talking about something much more specific than that: I'm talking about the people that keep suggesting ideas for how I might be able to manage to work, as if I'm so stupid that I haven't thought through even the most glaringly obvious of options.

As I've mentioned before, I used to be a stand-up comic. Three and a half years ago - figuring my health problems were only temporary and that shortly down the line there'd be some treatment for me - I made the decision to quit before I pissed off every promoter in the country. On average I'm too ill to function around 2 days every fortnight, which would result in me having to cancel a hell of a lot of gigs at the last minute. It doesn't matter if you have a legitimate medical reason for dropping out; if you put a promoter in a tight spot by leaving them with a gap in their bill they're going to deem you "unreliable" and never book you again. And they'll probably bad mouth you to every promoter they meet.

So figuring my health was just a temporary glitch I made the decision to quit before I alienated all promoters, with the hopes that when I got better I'd be able to return and have people willing to book me. Except I haven't got better so if I were to return now I'd very swiftly find myself unbookable.

But people seem to think I'm an idiot who hasn't thought about (and doesn't think daily about) this and they come out with lines like "but surely you could just book a few gigs here and there?" (I refer you to my statement in my opening paragraph about how making plans is basically an illness guarantor.)

I also get people who seem to think that quitting stand up was a crisis of confidence, or at least that's what I derive from the statement "you should go back to it! You're really funny!"

The next question again assumes I'm stupid; the next question is always, always, "well why don't you write?"

"Because editors expect you to be able to meet deadlines..."

"Oh, yeah. I hadn't thought of that."

So do these people really, honestly, think that I'm smart enough to write but too stupid for the idea of writing for a living to have occurred to me? Or is there something else going on? I think it's the latter.

The current government and media campaign to demonise those claiming benefits seems to have turned everyone into an amateur Atos assessor. The "they're all fakers" propaganda is so pervasive that even people who'd like to think of themselves as left of centre (and, you know, not a cunt) feel qualified to make judgements on a person's fitness to manage to work because they're constantly being told that everyone can manage some kind of work if they really try.

These are people who (I hope!) don't deliberately and consciously think "Lisa's not really ill, she's just lazy," but because of the daily news stories and government briefings about how we're all skivers find themselves thinking it subconsciously. And this rhetoric is so dominant that a couple of months ago I was having a conversation with one of the most leftie and politically aware people in the country who said "now, Incapacity Benefit. That's the one with the huge fraud problem, right?" Despite the fact that the official fraud rate for IB is around 1% (see page 8 of this DWP report). That's just how ubiquitous the bullshit is.

Having to deal with actual Atos assessors is stressful and worrying enough without our friends and acquaintances thinking that they have the right to judge our fitness for work and make assessments about the kind of work we could be doing. Just because you read in the Daily Mail that we're all fakers doesn't mean it's true...

ESA and the Work Capability Assessment

Today marks the day when the government's scheme to transfer all existing Incapacity Benefit claimants onto Employment and Support Allowance begins.
One and half million people will get their letters calling them into Atos offices for the Work Capability Assessment - the test designed to assess whether someone is genuinely in need of support or if they are fit for work.

Employment Minister Chris Grayling has said that genuine claimants have nothing to fear, that the only people who need to worry are the fakers who just prefer a life on benefits to one of work.

He's wrong. The fakers have nothing to fear; they have options. They are able to go out and work or comply with the regulations to claim Jobseekers Allowance. It's the genuine who are afraid because they have no options. If they could work they would do. No-one wants to be ill. No-one puts up with the 'scrounger' label or the suspicious looks if they don't have to.

Everyone who claims any of the disability benefits know about the WCA. Those on IB or in the work related activity group of ESA have been terrified of it for months. And rightly so - it's a terrible assessment that even the government's own advisory board as well as the man who designed it, have said is not fit for purpose.
They've heard the stories about those who've been denied benefit despite their illnesses. They've read the story of Paul Reekie, who committed suicide when his benefits were stopped.
Now they wait to see how their own claims will turn out.

I've been through two WCAs myself. The first was when I came down with my symptoms of MS, though I didn't have a formal diagnosis at that point. I was summoned to the Atos centre, waiting for what seemed an interminable amount of time, then was called in to see the doctor.
I was scared to start with and my fears were not allayed by he fact that I couldn't understand a word of what the doctor - from Eastern Europe - was saying. Nor could she understand me. She put me through a series of tests, none of which I could do, then sent me on way. The whole thing took maybe 15 minutes at most.

The following week I received the report she had sent to the DWP. I was shocked at what she had written - it was lies from top to bottom. Every test she had done she'd put me as passed even though I hadn't. She had omitted things I had told her and gone against everything that had happened in that room.
In short, she said there was nothing wrong with me.
This was despite being barely able to walk, being unable to feel my pelvic muscles which led to lots of bathroom visits and being so tired I could barely think straight. I couldn't bend down, I couldn't kneel down, I certainly couldn't touch my toes.

I sent the form, along with detailed rebuttals of everything that was wrong, off to the DWP. The following day I received a letter saying I wasn't entitled to benefits because I was fit for work. I then had to ring them up and tell them I'd appealed at which point they said my benefit would be continued until the appeal was heard. I was on tenterhooks, worrying over what would happen about it, if they would listen to me or uphold the Atos doctor's decision.

The next letter I received was one telling me the appeal had been successful and my benefit would continue. I can't tell you how relieved I was.

Last year I underwent the WCA again when I left hospital following my formal diagnosis with MS.
I received a letter from Atos telling me to call and make an appointment - if I didn't, one would be made for me. So I rang and spoke to a very bored and slightly dismissive man who gave me an appointment who gave me an appointment for a date that they decided.
When I arrived, I was shown into the waiting room by a security guard, and greeted by a receptionist who looked at me like I was something foul on the bottom of her shoe.
I waited for about half an hour, all the while getting more and more uncomfortable as I felt the judging stares coming from the staff. If anything is designed to put you off it's that. So far, it was worse than my previous experience.

When I was finally called in I met a very nice lady doctor who seemed to understand about MS. She didn't attempt to make me do anything she knew I couldn't and was very reassuring. Very different from the first assessment so I had hopes that it would be ok.
Well, she didn't lie. But that's about it. Despite having shown some knowledge of MS she placed me in the work related activity group, meaning that with the right support I could work.
Because of course the right support will mean that I no longer struggle to get dressed in the mornings. Or take a shower. Or cook meals. Or walk anywhere. Or need to rest after putting a load of washing on. Or want to cry when the pain in my head gets too bad. And it will get better because of course MS is curable.

I didn't have the strength or the energy to try and appeal though. Not to mention I was scared that they might stop it completely. So I left it as it was. I see an advisor every few weeks, meaning a taxi journey to the jobcentre where I wince with pain as I struggle with the sensory overload of neon lights and too many people.

And in the summer I get to go through it all over again.

Now then Mr Grayling, are you still going to tell me I have nothing to worry about?

Cross posted at Rage against the Coalition

Good Advice Matters

Someone drew my attention to a website called Good Advice Matters, which is a non-profit organisation dedicated to offering 'accurate and relevant information' on welfare rights.

We have many years experience behind us and specialize in disability and sickness benefits, appeals, benefits for foreign nationals, better off calculations, benefits for young people, benefits for carers etc.

Good Advice Matters supports the rights of individuals to claim the benefits that they are entitled to without experiencing judgmental attitudes, un-necessary delays and confusing and contradictory information. Good Advice Matters is frustrated with the lack of accurate information and advice currently being offered by the DWP. In short we feel that benefit claimants are being let down by the system.

Good Advice Matters is extremely critical of changes to the benefit system such as the introduction of employment and support allowance for claimants with limited capability for work and the planned cuts to benefits such as housing benefit. We have seen at first hand the devastating affect that a decision to stop benefit can have on an individual and we will actively campaign to ensure that claimants receive a fairer, more transparent and supportive service.

They invite people to contact them with any benefit query or question.

They have already answered one query about Is my Incapacity Benefit Safe? and under their DWP tag and benefit advice tag they have plenty more advice on benefits.

www.goodadvicematters.co.uk looks like it could be a really helpful resource for disabled people, regarding benefits and rights, especially as more, confusing and punitive changes come into law.

(Cross-posted at incurable hippie blog).

Incapacity Benefit: Watch out if you go back to work!

The latest broken promise by this government relates to Incapacity Benefit. In the past, if you have been on Incapacity Benefit, you were able to return to work – and if your health failed again, you could go back on benefit at the same rate under the “104 week linking rule”.

This is about to change; from the end of this month, people who are still on Incapacity Benefit will be unable to return to it (if they try going back to work, but find they are still too ill to manage, or become sick again thereafter). Instead they will have to make a fresh claim, for Employment Support Allowance (ESA). Worse still, the first 13 weeks of ESA would be paid at a lower rate than you could expect under the linking rule for Incapacity Benefit. And of course, it will mean going through one of those frightening ESA medicals – frightening because of the number of people who are passed fit for work when they are not capable of doing a job.

More information is available on the Benefits and Work website.

This may have the opposite of the desired effect: instead of going back to try working as soon as they think they may be able to manage, people on Incapacity Benefit may well opt to stay at home until they are certain that they can manage the duties of their job again. It's another example of the short-sighted unfairness typical of this government.

IDS blames benefit claimants for the defecit

A couple of months ago I was interviewed for a piece in Disability Now about The Sun's hateful campaign against benefit claimants.

I said:

“A lot of people, including Sun readers, lost a lot in the recession. The Government is using benefit claimants as a scapegoat for the country’s financial problems. The Sun sees [the campaign] as a way of boosting the egos of their readers, thus boosting their readership, by attacking the people perceived as responsible for all the losses the readers felt.”

Today The Sun and the government have gone one step further than subtly hinting that benefits claimants are to blame for the recession as The Sun has Iain Duncan Smith quoted as saying:

Paying a fortune to the five million on handouts - like X Factor reject Wagner Carrilho - is a major reason the UK's deficit soared to a crippling £155billion, Tory minister Iain Duncan Smith told The Sun.

From: www.thesun.co.uk

That's right: It's not because the bankers messed up and we bailed them out, it's not because Osborne lets his chums out of their multi-billion pound tax bills, it's because people like me have the audacity to eat.

Yes there is some element of fraud and there always will be. However the academic Jane Tinkler from LSE points out that the fraud rate for benefits is less than 1%. According to CityWire tax evasion costs the Treasury 15 times more than benefit fraud. Yet the government and the tabloids continue to portray us as the villains.

The Sun also post some manipulated facts about the process of applying for Incapacity Benefit.

They say:

Mr Duncan Smith only discovered the worrying new statistic that 47 per cent of people on incapacity benefit had been signing themselves on in the last few days.

In the most recently available figures, from the financial year 2007-08, they told him that nearly half of claimants were passed by simply filling in a form and sending it off.

Yes, filling in a form and sending it off is part of the process, but it's not the only part. I claimed Incapacity Benefit in the 2007-2008 year so I know something about the process in the time period specified. At first I had to submit sick notes from my GP. My GP would sign me off for 3 months at a time so every 3 months I had to go back. This was until the DWP sent me the aforementioned form, the IB50. The IB50 doesn't just ask you "are you sick? Yes/no." It's a very long, detailed form. It took me days to fill it in. It asks about your mobility, your sanity, your continence, your communication, your ability to dress and undress yourself, and pretty much anything else you can think of. But you don't just get the form, you also have to go for a medical where a doctor stares at your deformed bits to ascertain that you were telling the truth on the form.

Today's Sun article also says:

Britain was branded the sick man of the world last week after a report found we have more young people on incapacity benefit than any other industrialised country.

Which reminds me of the Daily Mail article in August that indirectly gave me the idea for Where's the Benefit?

I claimed (the now defunct) Severe Disablement Allowance (replaced by Incapacity Benefit) from the age of 16 until I got my first job when I was 22. You see, having impaired mobility I couldn't do bar work, stacking shelves in a supermarket, or any of the other fairly physical jobs people without a university degree tend to get. Which essentially meant I was unable to work until I was part-way through my degree thus educated enough for people to employ me to do a "thinking" job, the only kind I'm physically capable of.

Eugenics have progressed a lot since I was born and now a lot of disabled children don't make it as far as birth. Despite a lot of disabled babies being aborted there's not really a reduction in the number of disabled children around because medical advances mean that premature babies that wouldn't have survived in the past now do, but they're often left with cerebral palsy and other impairments. More children survive accidents and illnesses like cancer nowadays, but are left too ill or impaired to work so claim Incapacity Benefit when they turn 16. Despite his family money, had Ivan Cameron lived to see 16 he'd have been eligible to claim IB from his 16th birthday.

The fact that we have more young people claiming incapacity benefit than any other industrialised country is almost certainly linked to the excellence of our health service and we should be proud that children who'd have died from an accident, illness or premature birth in another country are still alive to claim incapacity benefit 16.

I came across today's Sun article through the fabulous (and award winning!) Disability Hate Crime Network because of their concerns that such hateful propaganda could fuel a rise in disablist hate crime. With our government and one of our biggest newspapers stating that incapacity benefit claimants effectively caused the deficit which the government are blaming all the cuts on, is it any wonder visibly disabled people are getting called "scrounger" and told to get a job by bus drivers?