Something I hear a lot from people who complain about others being on benefits is that they have no problem with people who truly can’t work getting them, it’s all those other people they’re pissed off about.

The trouble is, they imagine they are a good judge of who really can’t work.

What I’d like to say to these people is this. Every time you attack benefits, every time you call for them to be cut, every time you sit in the pub and have a rant about how benefits claimants are stealing from you, you perpetuate the myth that lots of people on incapacity benefit could work if they really wanted to and you’re increasing the stigma that makes it even harder for us to live our lives.

I’ve had people I know do this to my face. “Oh, but I don’t mean you“, they say when I speak up. Well, that’s the nice ones, I know very well that some of them do mean me because they have no idea about mental illness, no idea about depression, and generally no idea about other people’s lives. But even if they don’t mean me, they still mean some other person they don’t know, who they look at and think doesn’t look disabled so must be a cheat.

A friend with schizophrenia does voluntary work in a charity shop, and every week another volunteer, a retired man, says to him “haven’t you found a job yet?”, swiftly turning something that should be helping boost his sense of self into something that destroys it. Robin wrote eloquently about how the stigma of being on benefits prevents recovery from depression, and I see and experience that all the time – even from mental health workers.

There are many barriers to employment for people on benefits, and increasing people’s misery and lack of self-esteem by haranguing them for not having a job does nothing to reduce any of them. People on incapacity have been assessed by doctors and continue to be assessed (how often varies according to the severity of the disability – for someone with suicidal depression for instance, it’s about once every three years).

Politicians on both sides, pompous newspaper columnists working for tax-avoiding companies, bloggers, tweeters, and guys down the pub, all harp on about cutting benefits with little to say about how we can really get people out of poverty, apparently blind to the fact that cuts in benefits will only make poverty even worse. They might occasionally say “but I don’t mean you“, but in reality it’s exactly people like me who schemes to cut benefits end up hurting.

Given David Cameron’s remarks about the “economically inactive” and his wish to retest everyone on incapacity benefits to catch an imaginary 5% of frauds, it’s easy to see the Conservative’s launch of a campaign to protect disability benefits for pensioners as an opportunistic grab for some headlines.

In his Hugo Young Memorial Lecture, Cameron told us that ‘Big society’ is the solution to poverty, as opposed to big government. He wants to move the power from the state to communities, charities, and families.

In theory the idea of of big society over big government is one I strongly agree with. In my utopia, we wouldn’t have governments bossing us around and telling us what to do, or encouraging us to snoop on our neighbours if we think they might be benefit cheats because we see them unload a van. In my utopia, families and communities would care about each other and support each other, and human beings would be valued for more than their ability to be “economically productive”. In my utopia, we’d all work less and do more that has real value to the world. So you might think I’d strongly support David Cameron on this issue.

In the real world, alas, the Conservatives do as little to foster these human values as the Labour Party has done. You cannot shift the responsibility from government to communities and charities without first changing the negative attitudes people hold towards the disabled, the mentally ill, and people on benefits. A society that sees us as scroungers who contribute nothing is not going to be a supportive society. Many families want nothing to do with their mentally ill relatives, and workplaces remain hostile environments.

Charities do a great job, but they are hugely reliant on public funding, so this hardly shifts the burden from the taxpayer. Additionally, and crucially, no one has a RIGHT to be helped by a charity. While society is arranged in a way that overwhelmingly benefits the well, the working, the extroverted, the person with business skills, it is vital that a welfare system exists to help the people who cannot function in it. “Big Society” won’t be achieved by stripping away benefits, and making the poor and sick even worse off.

I’d like to point you towards an excellent blog post by Richard Exell, which examines some of the facts and figures: David Cameron’s Big Society Speech. As he says, “restrictions in access to benefits and reductions in their value will hit the poor hard.”

Cameron’s position is full of contradictions. For instance, he claims “no wonder that ‘society is broken’ when people are paid more not to work than work and are better off leaving their children than nurturing them.” Wait, hold on a minute, does he want people to be paid so they can stay at home and nurture their children, or does he want them to leave their kids in childcare (if they can find any they can afford) and go out to work? We see this double standard in the press all the time of course – women who work are bad for not staying at home with the kids, but damn those dreadful single mothers who live on welfare so they don’t have to go out to work!

“Big Society” will depends on volunteering. How are people going to find the time to volunteer when work hours are rising rather than falling? Why don’t the Tories and others recognize that a great deal of voluntary work is done by those who aren’t employed, who are on benefits? “Big Society” requires a move away from the values of consumer capitalism and big business, away from profits above people, away from the isolation and stigmatization of disability, mental illness, and the “benefits culture”. This is not something any of the major parties really has any interest in delivering.

I would love to live in a world where big society can take the place of big government, but in spite of the rhetoric, the Conservatives offer nothing to truly move us towards that utopian vision.

The tabloid press likes to tell us that “experts” say most people on incapacity benefits are making it up, but never actually quote any evidence for this.

Amazingly enough, they completely fail to print headlines about a real, actual expert’s testimony that hundreds of claimants are in fact unjustly imprisoned every year because overpayment amounts are being ‘wildly exaggerated’ by the DWP, as welfare benefits expert witness Neil Bateman has told MPs. In one case he assisted with, a woman prosecuted for a £47,000 overpayment had in reality under-claimed benefits.

According to Bateman, criminal judges and defending solicitors do not understand benefits law and it is very rare for a welfare rights specialist to be involved in defending claimants. As a result, the DWP get away with massively inflating the amount of benefit a claimant has been overpaid. Where this is more than £20,000 a prison sentence is the likely outcome, with the DWP getting positive press coverage for exposing the criminal.

Most overpayment cases that Bateman assist with arise not from someone deliberately plotting to defraud the system, but from foolishly failing to declare a change of circumstances.

I suggest you read Neil Bateman’s statement to the Commons select committee for yourself, because you’re not likely to see it in many newspapers.

So why have we been subjected to headlines falsely claiming that as many as 1 in 4 people on incapacity benefits are faking? Where do these figures come from, and who are the “experts” the Daily Mail refers to?

Not experts at all, it turns out, but computer systems based on check boxes and points systems, which fail to accurately assess people’s actual abilities.

The Labour government’s replacement for incapacity benefits, which new applicants now go through, is the employment support allowance (ESA). The “work capability test” for ESA focuses on physical abilities like reaching and bending. However it ignores questions about energy, stamina, illness, or mental state, making it far more difficult for people with mental health problems or illnesses like ME to get enough points to pass.

The people failing this test aren’t faking an illness, they have an illness which the test does not even attempt to measure.

The Guardian is one of the few papers which has reported on these problems.

Although the DWP claims that the WCA assesses whether the person can “carry out an activity reliably and repeatedly the majority of the time”, this is not borne out by the experience of claimants such as Wood and many disability organisations.

Daniel Berry, head of policy and campaigns at the MS Society, says: “MS symptoms can change by the day or even by the hour, so it’s vital that benefits assessors are trained to understand fluctuating conditions. Many people risk losing the financial support they need if they are inaccurately assessed.”

Welfare benefits officers working for the DWP also have grave concerns about the new test. One specialist benefits officer for sick and disabled people, and who wishes to remain anonymous, says: “What I’m seeing at ground level is that there are some people who do want to work but who are so ill and physically disabled that they can’t, and they’re being forced to go into the work-related group of ESA and to jump all these hurdles in order to get the benefit.”

So, under the new tests a large proportion of people with mental health problems and other disabilities face being put on lower level of benefits, or forced into “back to work” groups which may be deeply inappropriate for them and increase their level of stress and depression. Meanwhile, hundreds each year are unjustly imprisoned when they may in fact have been under-claiming benefits!

More people need to know about this. Please, please link, tweet, and post this to Facebook!

The Daily Express, which apparently doesn’t pay a good enough wage to attract a capable proofreader for its headlines, launches one of its typical attacks on people on incapacity benefits with Leo McKinstry’s offensive and insulting claim that:

It is telling that more than1.1million incapacity claimants are not suffering from any physical disability at all, but get their handouts by moaning about problems like “stress” and “depression”.

Suicide is the second most common cause of death in young people after accidental death. The Mental Health Foundation estimates that 70 per cent of recorded suicides are by people experiencing depression. According to the American Foundation for Suicide Prevention, 90% who those who die by suicide have a diagnosable psychiatric disorder at the time of their death, most often depression or bipolar disorder. A Samaritans survey found that jobs are the single biggest cause of stress – and that the link between work and suicide is likely to be underestimated.

It’s almost comical to see papers like the Express accuse people of “moaning” about stress, because their health pages are nearly always full of reports about the terrible stress of the workplace. They’re right there – the British Medical Journal has reported that people with stressful jobs are twice as likely to die from heart disease, and a government report found people who work over 48 hours per week have double the risk of heart disease.

So perhaps they’re just jealous, and wish they could live on seventy quid a week instead of being paid whatever they get to write columns for the press. Leo McKinstry thinks we have an “easy lifetime on the dole”, which just shows what an ignorant bigot he is.

No one suffering from mental illness has an “easy lifetime”. We face constant struggle in a way that Mr McKinstry is incapable of imagining. It is not a matter of “moral fibre”, it is a matter of brain chemistry (and social prejudice and stigma). Everyone gets stressed at times, but for someone with PTSD for instance that can mean being unable to leave your home, unable to walk down the street, unable to do basic tasks without having flashbacks. The chemistry of PTSD is well researched and people cannot control a dramatically increased cortisol response by having a stiff upper lip.

As the Secret Life of a Manic Depressive puts it, “I am sick of this bullshit being published. Swap places with someone incapacitated by schizophrenia for a week, you fucking idiots.”

Later today I’ll be adding a new contributer to the blog, who’ll be writing more about life with depression. For now I’ll leave you with the tidbit that the NHS watchdog has warned that “stress, anxiety and depression in the workplace is costing employers billions of pounds”. So apparently even if we had jobs, we’d be costing the economy money. If the economy is all you care about, I guess that’s more important than our personal suffering.

“Diary of a Goldfish” has an excellent post on Seven Myths about Incapacity Benefit, including “people on incapacity benefit are not assessed by a doctor”, “the 40% of people on Incapacity Benefit for mental health problems would be better off if they worked to keep their mind off their troubles”, and “there are loads of people defrauding the system”.

I used to feel quite defensive when people moaned about Incapacity Benefit but these days I just get very very angry. Every media story and every political statement made on this issue presumes that there is widespread fraud and “malingering”, where there is absolutely no evidence that this is the case. Of course fraud exists, as it undoubtedly does throughout the tax and benefit systems, but there is no evidence that it is widespread with IB. In fact, I struggled to find any up to date statistics about fraud at all.

But see, thing is, people on Incapacity Benefits include some of the most vulnerable people in society. We’re all made vulnerable by our dependence on the state and our relative poverty, but we’re also a crowd of duffers; people who don’t always have the intellectual, cognitive, physical or emotional capacity to fight their own corner.

Thus we make an excellent scapegoat. Of course, most of us are white British, so we’re not perfect, but if people are fed up with the amount of tax they pay (and people always are), it is a sure winner to point to us sponging cripples and declare that we’re not quite as crippled as we look (best of all, some of us don’t even look crippled, which is surely proof we’re on the make).

All very true and worth reading.

Talking about incapacity benefits these days is confusing, as the system has been changed for new applicants, and the processes for income support, incapacity, and the new ESA are all slightly different.

And the tests aren’t, as some insist, easy to pass. For instance, see Dr Tim Greenaway’s letter Failing the incapacity test to the Guardian, and this experience of a blogger with chronic fatigue.

What is life really like for people who are part of Britain’s “Benefits Culture”?

Being on benefits is looked down on in today’s world, by the politicians, the media, and large numbers of people we encounter in our day to day lives. According to papers like The Daily Mail, the majority of us who are on incapacity benefit, or income support on grounds of incapacity, are really just lazy scroungers who should be forced in to work.

We’ve become frustrated with how people take up the media on their assault on people with disabilities, and particularly invisible disabilities like mental health problems, chronic pain, and ME. Most people who haven’t experienced those problems, or have perhaps experienced them for short periods and then got better, can have little idea what it’s like. We hope to help overcome that barrier by writing about our lives, what we can and can’t do and why, what it’s like to be us, and why the press and politicians (of both leading parties) are actively harming people who already struggle to survive.

Please share your comments, or see the About Us page for more info.

One of the media’s latest gloating claims has been that most people on incapacity benefit in the UK “could do some work”. And I can hear these people now, were they to read this – “you can blog, why don’t you go out and get a job?”

My first reaction to these people is that that’s between me and my doctors, including the ones who assessed me for incapacity and agreed I qualified. Yes, you might not guess it from the way the papers write about the topic, but amazingly enough you already have to be assessed by professionals before you’re given incapacity benefits (which now have a confusing number of names, as the system is being switched over to something called ESA).

Since the point of this blog is to discuss these issues, I’ll overlook the rudeness of these interrogators for now, and give a few of the many valid answers to this question.

Why don’t you go out and get a job?

My disability doesn’t mean I can’t ever do any kind of work – I do voluntary work once a week, I write this blog, I enjoy taking photographs. What it does mean is that I cannot work often or reliably enough to perform in a job, as they’re arranged in today’s society. I do not know when I’m going to be too unwell, or how long that will last. I also get exhausted very easily, and half a day of voluntary work needs to be followed by a couple of days of doing nothing to recover some energy. I’m often exhausted, because just keeping up with everyday tasks like laundry and dishes and paying bills is overwhelming when you’re disabled, physically or otherwise.

Having some skills and abilities doesn’t mean you can exercise them in a job. It doesn’t mean you can show up on a day to day basis, partake in the expected social interactions (especially if you have to deal with customers with a chirpy smile on your face), and not quickly become so ill you can’t get out of bed. It doesn’t mean employers would want you, either, even for relatively menial work – I know someone who was fired from a job as a cart collector for Tesco, because he looked too glum. He committed suicide about a month later.

Let’s imagine, for a moment, that someone who’s been on incapacity benefit for a couple of years gets better, and is able to return to work, which is what the government wants us to do. They apply for positions, if they’re really lucky they get an interview, and what happens? Oh look, they have a gap in their history of paid employment, no one wants to give them a job. If you want to remove barriers to work, how about starting with the ones caused by the people in the position of power, instead of constantly attacking the powerless?

There are many more aspects I could cover here, of course, and they’ll be brought up in future posts. For instance, along with energy goes time. Doctor’s appointments, psychiatrist’s appointments, CPNs, support groups and CMHTs, even if you have the energy to do more than all that you’re going to need a job that doesn’t mind giving you frequently time off for it. People with physical disabilities face other factors too, like the extra stress and effort of finding accessible transport, arranging aides and assistants, even things as simple (to most of us) as people understanding it takes you 20 minutes to go to the loo.

Being able to work is about more than just your physical ability to perform a task. It’s also about being able to get and keep a job that’s appropriate to your abilities, without making yourself more disabled and more unwell.