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.

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Two links for today:

Inequality based on disability is widespread, according to research.

The survey identifies a stark pay gap between disabled and non-disabled staff – the non-disabled being more than three times more likely to earn £80,000 or above – as well as far less access to the mentoring and support that many disabled people crave. In addition, while staff with mental-health conditions are far less likely to be top earners or board directors than those with more visible, physical impairments, they are also significantly less willing to disclose details of their condition for fear of being stereotyped or sidelined.

Interesting piece, though more about people towards the top of the career ladder than those struggling to get by on benefits.

And, Depression as deadly as smoking… “A study by researchers at the University of Bergen, Norway, and the Institute of Psychiatry (IoP) at King’s College London has found that depression is as much of a risk factor for mortality as smoking.”

Also many thanks to cdaae for tweeting our posts, and to Mark Brown, who said of us “On the ground experience becomes interesting and combative citizen journalism”. All your links and comments are very much appreciated!

“Fury at escape of schizo killer!” blares The Sun, showing their usual degree of sensitivity and caring towards people with mental health problems.

I think it’s best to quote Time to Change and Rethink’s words on this. “Whilst this is a news story and The Sun can legitimately report the event and the comments of those involved Rethink does not think using the word schizo is acceptable.”

The Press Complaints Commission Code of Practice, point 12 i) states; The press must avoid prejudicial or pejorative reference to an individual’s race, colour, religion, sexual orientation, physical or mental illness or disability. However, they do not seem to think that using the derogatory term “schizo” to refer to schizophrenia is “prejudicial or pejorative”.

Rethink suggests we let the PCC and The Sun know what we think about this, and makes the following points.

• Whilst I understand that The Sun serves to inform readers of news events using the word schizo in the headline is unacceptable. It does nothing to add to the information and simply reduces a complex condition to a derogatory taunt

• There are over 600 thousand people with schizophrenia in the UK, the vast majority are law-abiding citizens. Using the word schizo in the headline only serves to increase the fear and prejudice that exists towards people with schizophrenia and their families

• I do not accept that “schizo” is an acceptable shortening of schizophrenia or schizophrenic, these are medical terms whilst “schizo” is nothing more than an ugly taunt

• It would not be acceptable to shorten lesbian to “lesbo” or refer to gay men as “homos”, nor would it be acceptable to refer to quadriplegics as “cripples”.

Please see their post for addresses to write to and further tips.

This has nothing to do with benefits, but it’s about the way the media constantly reinforces damaging stereotypes about the mentally ill. The Press Complaints Commission seems to think that “schizo” is acceptable language, but charities and professionals who work with people with mental illness, and of course those with the conditions themselves, strongly disagree.

Schizophrenia is a serious condition, and a nightmare to suffer from. Shame on the PCC for letting the tabloids get away with making the stigma and prejudice about it even worse.

Violet writes below about how the stress of work can make depression worse, and I thought I should back that up with a few figures and examples.

For instance:

Just ask France Telecom. Since the beginning of 2008, 24 employees at the company have committed suicide and an additional 13 have attempted suicide. Many of these victims left suicide notes implying the company’s working environment was a key factor in their decisions — one even explicitly cited “overwork, stress, absence of training and the total disorganization in the company.” Some of the attempts occurred on France Telecom premises.

Working hours in the UK have increased steadily since the 1970s, and with them working stress.

In January 2004, a marketing director at Prudential was reported as saying: “Our research shows that an alarming number of people appear to be unhappy in their employment and unfulfilled by their work”. BBC News has quoted the International Stress Management Association saying: “Each year we conduct research into stress and each year the figure just keeps on getting worse.”

According to UN figures, approximately two million workers die annually due to occupational injuries and illnesses. This is more than double the figure for deaths from warfare. Work kills more people than alcohol and drugs together.

Less than a month after attacking the depressed and stressed for whining instead of working, the Daily Express has reported that work-related mental illness leaves “employers with a total bill for lost productivity of £28.3 billion a year”. Even the measures which concentrate purely on the economic impact on depression for businesses and ignore the suffering of the individuals admit workplace stress and misery a major problem.

This may all sound like I’m saying work sucks and you’d be a sucker to do it, the kind of attitude often attributed to the ‘benefits culture’.

That’s not what I’m saying. I’m saying that any policy that tries to get people off benefits by focusing purely on making them apply for jobs, and ignores the real harm the work culture can do, does considerably more harm than it does good.

PS: On LiveJournal? You can now follow our syndicated feed through your friends page.

Now I would like to add some more to my post about a day in the life of depression (and thank you for the comments!).

Not every day is like that. I tried to describe one that was a balance between the absolute worst times, the times I spend all day in bed, all day either unconscious or wishing to die, the times I can’t believe in any future that isn’t hell on earth; and the times I feel relatively okay for a few weeks, the times when I can get engaged with something and feel lighter.

Yes, there are times when I feel energized, passionate about something, more positive. I try to get everything out of those moments that I can, because I know I can achieve a lot when I’m in that kind of a flow state. Also, because I know from experience that they’re not going to last. Some outside stress will find its way in, panic me, and down I’ll go.

I live in a Catch 22 situation on benefits, because in theory not having to work should allow me the time and space to get better, and sometimes it does. The constant stress of not having enough money often cuts in to that of course, and so does the constant pressure to be working towards getting a job, not because I’m a lazy scrounger but because in my long experience of myself and my struggle with depression, I’ve found that when I’ve started part-time work there’s been an initial high of “I can do it!” that after a few months turns into a fearful spiral of worsening depression, until I’m back in the pit of suicidal feelings and utter despair.

I can be on benefits and go between times of relative wellness and times of fear and depression, or I can do part-time work (which isn’t nearly enough to live on), and be suicidal and end up hospitalized. What good does that do me, or the taxpayer who funds the NHS?

The trap of the “benefits culture” we so often hear about should be seen as equally a trap of the work culture. At the moment I do some voluntary work, and that means that when I hit a slump I can phone them and say I won’t be in for a couple of weeks, and that’s okay. Can you find me an employer who’d be okay with that? Since it’s only one day a week sometimes I can drag myself in even when I’m not feeling at all good, because it’s low pressure, it’s doing something I feel is worthwhile, and the other people are open and friendly and share some of my views and interests. I feel I can at least partially be myself, and I feel appreciated for who I am.

Contrast that with the average modern work place. To start with I couldn’t get any very great job, I’ve been out of work too long and lack any great formal qualifications. The kind of jobs the employment people have suggested for me have all been service industry, working in shops, on my feet all day and dealing with people. These set off all my major stresses, all my trigger points for depression, and believe me I’ve had years of therapy figuring out what those are. I’ve tried these jobs, and it has never taken me more than a few weeks to become severely suicidal.

What, aside from the degree of social phobia I have, is the problem with them? They are the opposite of my voluntary work. They are inflexible, high pressure, I am surrounded by people I have little in common with, I cannot remotely be myself, I have to put all my energy in to maintaining a false “cheerful” face, and the only way I can get through them even for a day is to completely deaden myself. Then there is the stigma of depression or mental health problems, and of having been on benefits in the first place. People notice you’re different and make cracks that constantly remind you how poorly you fit in. Managers hassle you to smile more. An ill-tempered customer can crash your self-esteem for a week.

My first suicide attempt came after 3 weeks being a waitress in a hotel restaurant. My boyfriend stabbed himself after 4 months working in a pub. My best friend’s brother committed suicide not long after being fired from a cart collecting position with a supermarket for looking too glum.

I’m not saying our jobs caused these things. We all had (and have) many issues contributing to our states of mind. Our working experiences just reinforced our feelings that things were hopeless, that life wasn’t going to and could never get any better, that the pain we were in from whatever variety of causes simply couldn’t be borne. It told us we were always going to be misfits, we’d never be able to support ourselves, and no one really wanted us anyway. It was the worst thing possible for our sense of self-esteem.

Of course work doesn’t do this to everyone. If you can find work that you feel is rewarding, if you get on with your colleagues, if people are accepting of your limitations, if you can work enough hours to make enough money to survive, work may boost your self-esteem and give you a reason to get up in the morning, rather than make you dread it even more. Whether you can find such work depends on what’s available in your area, and also on your personality, your skills and abilities, and what you find worthwhile.

It’s often said that creative people are more prone to depression. I wonder if that’s partly because, in today’s world, it’s much harder for us to find fulfilling employment unless we also have good business skills, or the energy and drive to get on a higher rung of the ladder in a creative career. Our world also rewards extroversion, and depression is a very introverted kind of problem.

If you’re well paid and can afford to take a sabbatical, if you’re far up enough in a stable career with a good company, you may be able to take time off or be given the leeway you need to recover. If, on the other hand, your mental health problems strike early, disrupting your education and your chance at even starting a career, you face a very different picture. Poverty and hostility do not help anyone’s mental health.

So there is my Catch 22. If I get better, I will be forced into a job that will make me a hell of a lot worse again. If society or the government wants to get me out of the “benefits culture” they should start making more workplaces less hostile towards people with disabilities, in my case particularly towards mental illness. They need to offer more than depressing low-wage work, not because we think we’re too good for certain jobs but because forcing us into jobs that we cannot cope with just makes us ill again, and puts us back on benefits (if it doesn’t cause us to kill ourselves first).

I don’t think this culture change is ever going to happen while we have constant headlines generated by politicians and well-fed, second-home-owning columnists telling everyone that people on incapacity benefits are mostly liars and scroungers who “moan” about stress and depression. These politicians, and their pals in the tabloid and right-wing press, are part of the problem, not part of the solution.

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!

Hello, I’m Violet, I’m on income support for incapacity for long term depression, and I’d like to invite you to spend a day being me.

I wake up. My brain instantly regards this as a bad move, and does its best to put it off for as long as possible, hibernation being an instinctive self-defense mechanism against depression. Unfortunately it’s counterproductive so eventually I manage to make myself get up.

Coffee. My eyes glaze over to avoid the horror of the piles of dishes waiting to be washed, and I clean a mug as fast as possible before the panic sets in. Coffee in hand I escape to the computer and check my email. I spend some time connecting with friends and the world, and then I make a mental list of the things I absolutely have to do today because they cannot be avoided any longer, like buying some food for the next few days.

Town is a 20 minute walk away. Exercise is good, when I am up to it, but 40 minutes of walking (half with heavy shopping bags) and the time spent dealing with other people is not good for my thought processes. Sometimes I’ve been able to drive into town, but it’s almost impossible to afford to keep a car running on nothing but income support.

I prefer to go to small shops, and exchange some friendly words with local shopkeepers who know my face, but sometimes I can’t avoid the supermarket, and the crush of “normal” people inevitably sends the negative feelings spiraling out of control. I feel different, isolated, cut off, tearful, I have to concentrate on my breathing to keep down the panic.

I escape home. If I’ve walked, by now I’m exhausted for the day. Even if I’ve driven the emotional expenditure often calls for a crash to recover for the afternoon. I unplug the phone, because it’s awful jangling noise makes me want to bury myself in a hole for the next ten years, and I can’t cope with any more people right now. I remember I’ve got a pile of unopened bills to deal with. I panic about the cost of heating over the winter. I realize I still have to face the dishes, oh, and I need to put some laundry on if I’m going to have any clean underwear. I want to crawl back in bed and pull the covers over my head but if I fall asleep now I’ll have dreadful nightmares due to side effects of my medication. Half the time I fall asleep anyway. The other half, I calm myself by telling myself not to worry, if it ever gets too bad it’s never too late for suicide. (Out of proportion? Yes, that’s what depression does to you.)

Evening creeps over the world. I have probably only eaten a couple of pieces of toast, so it’s time to put some food together, which involves tackling some washing up, and its attendant feelings of uselessness, worthlessness, and self-hatred. I am pathetic. Any normal person does not get so overwhelmed by simple housework that they live on toast for a week. I’m so pathetic I should just stab myself in the throat and get it all over with. Fuck, it’s not as if the powers that be want me to stay alive. Just die already, you stupid whining fool. Save us all the effort of listening to your pointless, self-pitying blabber.

Then I might cheer myself up by researching suicide methods on the internet, and working out which is the most accessible and least painful. I’ll also connect with friends and support forums, and maybe I’ll feel a bit better, maybe I won’t. When I’m seriously suicidal I become so weak I can barely move, my limbs feel full of lead, I’m incapable of taking any action on my suicidal thoughts. That is undoubtably why I’m still alive.

Some days are better than others. Maybe I made a nice meal full of fresh vegetables and delicious spices earlier. Maybe I remembered to plug the phone back in and had a nice chat with a friend. Perhaps I watched a movie with my boyfriend. When I’m in an “up” phase I do some voluntary work, and spend time supporting other people on depression forums.

On the other hand, some days are worse. The oven breaks down and how am I possibly going to afford to replace it? I get a letter from the benefits people and have to spend all day dwelling on my miserable state and writing it all down and filling in all the same boxes as last year and feel like I don’t fit into a box and people are chopping my limbs off in order to force me in to one. Perhaps I’ve had such a shit week I can’t get out of bed and get up at 5 pm and half watch random crap on BBC iPlayer and fantasize about cutting myself to make the hours go by.

Inevitably the day ends with me going to bed and lying awake tossing and turning for a couple of hours waiting for my brain to just shut the fuck up with all its bullshit already and let me sink into the world of my dreams for the best hours of my life, even when the meds mean they’re mostly nightmares.

Welcome to a day in my life. I hope you enjoyed your stay.