Sunday, 22 May 2011

Welfare for the people, by the people - a Consultation

Did you ever wish you hadn't started something?

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

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

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

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

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

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

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

"I despair"

Or another?

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

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

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

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

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

No, No and No.

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

The solution? Cheat.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  1. What would help me is not to feel constantly that I am somehow wrong in needing to use the benefits system - that I'm a waste of space, someone who should be ashamed and someone to be ashamed of. I can't work full-time because I am unwell, but I do more for society in terms of unpaid voluntary work for charities such as MIND than most people I know. But every time I read the paper, look at Twitter, turn on the news, I'm led to believe that this unpaid contribution to society doesn't count, that in receiving DLA I'm stealing from taxpayers (even though I am a taxpayer myself since I get a small ill-health pension), that I am worthless. I need to feel that I have value to society which is derived from something other than paid work.

  2. "Have the private companies, paid billions to find us work been successful?"

    Yes, they have. They've been successful at being paid billions. From their perspective, that's the point of the exercise. That's what all this psycho-social nonsense is about. It's the lipstick on the pig. It's to make outright theft from the public purse seem respectable by dressing it up in a load of incomprehensible pseudo-scientific mumbo-jumbo. Actual welfare reform was never an objective. These people, politicians and businessmen alike, see the public purse as a money mountain. It's an irresistable lure, all that lovely money just sitting there waiting to be plundered. You want to understand what's going on? Follow the money.


  3. I've now read your report ... and I think I'll share it on FB, if I may. I want this to get spread about everywhere so the able-bodied and disabled alike can see what these idiots have in mind, and how the entire premise for their rationalisations comes over as having an even shakier footing than Harold Camping's Chicken Little Rapture Ministry.

  4. I have end stage heart failure and will not be able to return to work, as much as I would love to. Being at home drives you mad. But getting breathless as soon as you move and the angina pain that goes with makes it impossible to do just about anything

  5. I'd come to the conclusion that the reason all these successive policy makers imagined we all cheat is because they cheat and they project their behaviour onto us, because it's what they expect we do, no matter what the evidence says. But you are absolutely right, the only way we can change anything is by education and by becoming part of the process.

    I'm not going to post an inadequate response now, but I am going to take time to evaluate what I would be able to do and what I would need in order to do it.

  6. I have worked, but it is hard, not the work but getting the work and being treated fairly and being supported. The third sector seems more willing to employ me and to recognise my skills, abilities and experience and not just see me as a 'risk' because of my psychiatric label, but, this cannot always be guaranteed and the contracts are always time-limited. I am currently fighting a case against a local authority who withdrew a job offer for me to work as a 'recovery officer' in mental health. The managers who made this offer thought it would be great to have someone like me to inspire their clients to challenge barriers and try to 'do it anyway' despite our impairments, which are considerable. However, once HR got involved, I was put through a lengthy process to try to prove... well, that is the question to which the answer remains unclear, it seems that I was too great a risk, they assumed I would need too much support which they couldn't provide (they claimed although they never discussed this with me) they said I was too similar to their clients and this would make me ill, even though I had worked in this field for 15 years. In short, equality looks good on paper but when even the largest employers won't put it into practice, it's depressing, to say the least, and what with this kind of stigma and, for me, having to cope with redundancy, claiming benefits, being thought of as a scrounger, it all impacts on my already fragile mental health. What I feel would help is actual equality with the law being enforced, but, the law is itself part of a stigmatising society and we now have little recourse to funds to enforce it... so, it seems we are stuffed

  7. Sue! OMG... what a completely earth-shattering post you've written. I say this because I can't believe it will come to pass, although the signs are surely there.
    I suggest that every council employ a disabled person as a consultant in social housing and benefit claims. I also wish that these officious twats were forced to "Walk a mile in our shoes" and forced to spend a whole 24 hours in a wheelchair and see how even the most basic of functions - which they take for granted - is a challenge for people like my husband (who runs his own company and has done since 2003...)
    Where do I sign up to help you? If you need someone to become more active for you tweeting, facebooking, sharing or even writing, let me know.
    Let's talk about "quality of life", not quantity of benefits...

  8. Scrap the WCA. Work with people's consultants and specialists and make sickness benefits come under Dept for Health instead of DWP.

  9. Hi - Is there anything you would like changed that COULD help you work

  10. Well here goes! Going to try to do my bit to help and educate the politicians (people I have no belief in, and feel don't really want to help us anyway). I was born with a connective tissue disorder, summed up in two words, progressively painful! I served my country, HM Forces Army girl! Now I have constant pain, in every joint of my body! From my jaw all the way down to my toes, associated problems include, autonomic dysfunction, POTS, gastro-intestinal problems to name but a few! Then comes the bonus, Its hereditary! I get the pleasure of watching how it hurts my mother, and whats coming my way. My children, who already are suffering from dislocating joints get to see doubly what is coming their way. With all this against us, my mother worked all of her life, and I work damn hard! Because of my problems I actually lost my job of choice, but now do my upmost to perform my current job to the best of my ability! My health is worsening, partly because of my job, partly because it is the nature of the beast I was born with, but regardless I go to work. I have no life outside work, it drains me of my energy and all my spare time is taken to recharge myself to be able to work the following week. My husband is an angel, helps me out of bed, helps me to dress, even has to help me to go to the toilet and to bathe myself, and yet to the powers that be I am not entitled to any help at all. I am about to embark into tribunal land, I have British Legion representation and my GP fully supports my application for DLA. I will not give up! It has not ever been in my nature to! My life WILL become more and more debilitating and painfull, that is a fact! My condition means that surgeons fear operating, doctors never know what to do. This is where the irony kicks in, for nearly 20 years I have worked in and around the NHS, devoted most of my life to looking after and trying to help heal the sick, to find when it comes to the crunch, the country I served and the employers I still serve are unable and unwanting to help me and my family. The system we have is unjust and becoming even more so. Drug addicts and alcoholics are given money to buy what has made them ill, but I who have given my all, am not entitled to help with something which is of no fault of my own! I will stop babbling on now, I feel so angry and cheated about this situation! Thank you for giving me the chance to have my say.

  11. I don't really know. I find it hard to think of it from just my perspective, instead I look at it from an employers view. Why should they be made to pay out for someone who is unreliable, unpredictable, inaccurate and slow when they could employ someone who can fit their needs without it costing them more money. They have a business to run after all and it doesn't make financial sense to employ me.

    I would need an employer who is happy for me to turn up as and when I feel able. Is there such an employer?

  12. If I could think of anything that would get me back involved in work, or indeed in any of the rest of the things in my life that I have had to give up (such as having children or a social life), then I would be doing it.

  13. As I see things, welfare has a primary purpose of keeping people alive. Survival is paramount.

    I totally agree with Hellsbells!

    The damaging narrative put forward by neoliberals is that everyone should be on a path towards work, as all are capable of some work. This idea is so flawed, it should not be accepted. It certainly should not be allowed to frame the debate, as this prevents meaningful discussion.

    Genuinely helping people back into work is a secondary aim.

  14. Oddly enough, my pain management team thought I was working long past the time most people would have been unable to continue and said as much in reports to my employer, in fact the last time I had a one-to-one with my consultant, as part of trying to stay in the job, he actually said he thought maybe it was time I stopped - I said I wasn't ready to do that. Ultimately I had to be dragged kicking and screaming out of the workforce, so here's a radical idea, maybe the problem isn't the people with disabilities not wanting to work, maybe the problem is management not wanting to employ the people with disabilities, and government conniving to cover up the rampant disablism in the workplace.

    What is the single biggest thing government could do to get disabled people into work? Admit that the problem isn't disabled people, it's the employers who refuse to treat them as equal.

  15. @Hellsbells: while that's the case for many people with chronic disabilities and illnesses it isn't universal. Disabled people in work actually tend to be better employees than average, it's so hard for us to find work we tend to stay in position longer and not to take sickies for minor reasons.

    The problem is management look at you as a problem even when you can do the job. I was actually running a world-class config management programme for years, but they would much rather look at the narrow range of things I couldn't do rather than what I could. They tried to shove me into a corner, I turned that into a success, so they found an even more obscure corner to shove me into. It wasn't that I couldn't do the job, it was that there was a presumption that my disability made me 'a risk', no matter what the facts said and no matter what I suggested as reasonable adjustments.

  16. @Hellsbells... Thumbs up, It's such a simple and fair solution, why are they making it such hard work and unfair for the disabled and sick, to quote you again,

    ''Scrap the WCA. Work with people's consultants and specialists and make sickness benefits come under Dept for Health instead of DWP. ''

    Come on Messers Cameron, Clegg and Osborne... This is the answer, so what the hell are we paying you twits for?

  17. Hellsbells/DavidG - Do you mind if I add your comments to the consultation?

  18. @Sue: That's what they're there for!

  19. on a purely personal level:

    1. for employers to not hold it against me at interview because I say upfront that I have chronic illnesses.

    2. part time working which isn't awful pay or expectign full-time work in part time hours (especially as i'm female)

    3. flexible and home working

    4. to have disciplinaries for lateness removed retrospectively from my work record now that i have been diagnosed, as my illness impacts sleep and ability to move first thing in the morning.

    5. cultural shift: for others in society to not judge me as my disability isn't visible. or for employers not to give me s*** because i have yet another doctor's appointment/surgery/treatment (i actually had an employer try to tell me to come in the afternoon after surgery under general anaesthesia).

    6. for there to be more availability of those things which do ease symptoms: such as hydrotherapy.

    more when i think of them.

    thank you thank you thank you for the work you do!

  20. for recognition that when i say i am in awful amounts of pain, that that is not only genuine, but the sugar-coated version as i don't want fuss.

    also that some of my conditions are deeply private, and the explaination of them is mortifying, so i don't discuss the severity of symptoms: especially not with a male line-manager who i have to see every day. so the ability to maintain my privacy over some issues.

  21. How about the government hiring us as consultants? What about making it policy that only people who have walked the walk can counsel people who are walking the walk (or wheeling the walk or whatever)? It is time those able-bodied males get out of the way so we can show them what we need, how we need it, and more importantly, what we don't need, which is their blasted psycho-social models of stupidity. Oh but wait... I'm rising above my station and must remember my place.

  22. A few ideas:

    1. I agree with David & Hellsbells, the very best way to improve the chance of disabled people moving into the workforce is to IMPROVE THE MANAGEMENT TRAINING OF BRITISH BUSINESS. Secure technology for remote working is available and would for example, make it possible to be a call-centre worker from home (supervisors can see/talk to you via Skype) yet I don't know of a single company that uses this model and most are reluctant to extend it to their existing workers. I put this down to poor management confidence and lack of delegation skills. As a result supervisors want to be able to 'stand-over' you rather than trusting you to get on with the job.

    2. I wrote a detailed report for False Economy on my idea to RAISE THE PERSONAL TAX ALLOWANCE TO £10,000 a year, but the benefits of this need to be extended to benefits claimants as well. This would be achieved if you also

    3. RAISE THE CAPITAL ALLOWANCE AND WEEKLY EARNINGS LIMIT which would encourage self-reliance, part-time work and the confidence to start a small-business (3 in 4 fail in their first year - we know this). It would also remove my personal problem of an effective marginal tax rate of 295.5%. I currently lose £3 for every £1 I earn over £20 a week so I'd actually be paying to work.

    4. WE NEED TO BE ABLE TO TRUST THE DWP & THE JOBCENTRE. One of the reasons the 1-year linking rule wasn't taken up by many people, was the simple fear that they couldn't rely on the department keeping its word and restoring their prior welfare claim if they proved incapable of keeping up the job. The simple fear was that the attempt would be used against us to 'prove' that we were actually fit for work. The extremely tough Australian system gives people on the Disability Pension a two year window and automatically reinstates their claim no questions asked. Perhaps the department needs to ask Centrelink how they manage to get the trust of disabled people in Australia?

    5. If they absolutely insist on changing the welfare system, SCRAP PIP AND THE UNIVERSAL CREDIT AND SIMPLY COPY THE AUSTRALIAN BENEFITS SYSTEM. The current faux consultation process must be costing a fortune and the entire public believes the DWP have already decided the outcomes. You'd have the advantage of access to an extremely tough, well-tested and robust administration system with software systems ready to copy.

    Those are my primary contributions having trawled through the policy papers, like yourself. If I think of anything else I'll add it later.

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