Monday 18 April 2011

A Note to Disability Sceptics

It might sometimes seem as though disability campaigners are asking you to take an awful lot on trust.

We tell you that we are not opposed to all welfare reform, yet only write about the parts we disagree with. We point out that genuine support to find rewarding employment would be welcomed, but ask you to believe us when we say that it is the system put in place that fails us - and you.

You watch TV programmes and read newspaper reports that claim virtually all on sickness benefits are "scroungers" or "skivers", yet we keep pointing out that in fact fraud is the lowest of all social security benefits at just 0.5%. Perhaps we should spend a little more time acknowledging that many people on sickness or disability benefits would like to work and would welcome the chance to try.

If you happen to be aligned to a Conservative viewpoint, it's hard to continually hear that a policy is not only chaotic and mis-informed, but potentially dangerous and cruel. As a Labour leftie, I know all too well how frustrating it is when you have the best of intentions in government, but face a constant wall of opposition. If you believe passionately that work is the best medicine, it's hard to hear that for some, that just isn't the case.

Nonetheless, when something is wrong, it's wrong.

Employment Support Allowance (ESA, the replacement for Incapacity Benefit) was wrong when Labour introduced it and it's just as wrong today. It was based on flawed assumptions and spurious research. In 13 years, it was the first thing I openly opposed my own party over. It was clear that it would cause great suffering and injustice and I simply could not let it go unchecked.

Worst of all it might just sound like self interest : "Don't cut our benefits, don't make us pay."

Some ask how I  (and my campaigning colleagues at The Broken of Britain ) manage to write so passionately or find time to research our work, yet don't take a "real" job. Well this is why.

We are making ourselves (more) ill. We are pushing ourselves too far. Daily, we take on too much and fight too hard.  Yet at some point a kind of fatalistic "nothing left to lose" attitude crept over us. We don't have wealthy supporters or powerful voices to fight our cause. If someone wants an "expert" for a radio show or newspaper column, it has to be us. There is no-one else. If someone wants an article within the hour on a particularly pernicious benefit story, we have to write it. There is no-one else.

But we're doing it for you too.

Sickness or disability can happen to anyone at any time. You might think that you would cope, work on through, but we who have been there know that sometimes there comes a time when you simply can't. We know that life can change in a heartbeat. That cancer or car accidents, disease or despair can strike anyone at any time - from the CEO who has a breakdown that he thought could never happen to him to the student diagnosed with leukaemia.

We know that skis can come lose or motorbikes can spin into ditches, crushing our hopes for the future as surely as our limbs. We know that defective genes or delinquent organs can lurk as surely in a lawyer as a clerk.

And we know, through terrible experience that when, God forbid, the lottery of life comes calling, you have a right to dignity. Not wealth or special favours, just a little basic provision and a knowledge that we live in a society that won't let you fall.

So, we have to fight. We have to be controversial. We have to grab your attention. We have to find ways to have our voices heard by a media and political class who largely don't want to know. But I just wanted you to know that we're fighting for you too.


  1. I fully agree that disabled people are being made sicker due to the regime of looking for people who commit fraud. However the cost of applying stringent tests and gruelling forms not to mention the process of all to often having to appeal decisions due to poor quality decision making and medical assessments that seem to go into the realms of diagnosing problems over and above those made by doctors and specialists by badly qualified mostly foreign nurses and doctors whom even the NHS do not want on their payroll is something for cause for concern. Many on disability are also former tax payers and contributors into the system that was designed to be an insurance for them should the worst happen health wise. Had they been a private assurance or insurance company then the courts would be full of claims and claims for injuries and everyone would be upset with the company. As it is the government who has taken the contributions which are like premiums the problem is ignored and many are made to suffer in the search for fraud.
    I often wonder if the cost of catching the 0.5% fraudsters really constitutes a savings or added costs for the hiring of so many experts and medical assessment staff and if it really outweighs the savings of harassing so many innocent and disabled and sick people not to mention the cost in real terms against the savings. It is a good question to ask in the light of the system taking on a life of its own!

  2. I wanted to say a huge thank you to you for all your work on this campaign. No, I don't live in the UK - I'm a thirtysomething disabled woman from Melbourne, Australia who's never been well enough to work in my life. I am able to live thanks to a government payment which is just enough to scrape by.

    Partially I am following the UK's insane proposals because I'm a human being and so I care - I can empathize very much with the terror that happens when the government suddenly seems to want you to exist on less than the smell of an oily rag and it isn't any fun. Nobody should have to go through that. But first world countries also look to each other - our government is busy complaining about the "lazy" disabled people again too and making louder than usual grumbling noises about tightening the rules - it's nuts of course, Australia has no more welfare abuse problems than the UK or pretty much any first world country with this type of system has - but the government gets a lot of mileage out of it anyway. If the Australian government can say "Look, the UK did this..." then they'll use it as an argument that Australia should do the same thing. Governments do that all the time, and it makes what happens in the UK is directly relevant to every single disabled person reading this who gets any government support from any government anywhere on Earth.

    So yeah, you aren't just fighting for your own countrypeople. You're fighting on behalf of ALL of us ... I'd bring you a gift but it's a bit far to swim with all this fatigue, so all I can do is say "thank you" and remind you that we appreciate it very much.

  3. Wow I have tears in my eyes reading this and then the responses...such a feeling of unity, it gives me hope in humanity because going through illness, isolation and then what amounts to torture (and I know it is a strong word but the effect it has makes difficult conditions and situations far more crippling in so many ways) I could lose faith in my sanity but the world it seems is the one going mad.

  4. Six years. Six long years it took fighting when I couldn't even feed myself. Fighting to get the government disabilty that was suppose to be there to catch me should I fall. Saying "Thank you" for what you're doing doesn't seem like enough, but here it is...THANK YOU! No one should have to go through that.

  5. Absolutely true but what you didn't say, was that you fight for us all but also follow your body, you do this, making your health worse but still when your body let's you, which might be 3 o'clock in the morning, lunch time, or all night; in the system how many jobs are there that let you work flexible enough to fit your body? Sometimes Monday's might be great, other times you might be too ill to work until Thursday 3am. That's after finding a job that you are physically able to do in the first place.

    Keep up your great work. As you know we live in a system where we are given and should be grateful, some off us can't be self advocates for a host of reasons

  6. The thank-you's and compliments make it all worth it. :)

  7. Btw I think you are spot on, use words fantastically and thank you for all you say on everyone's behalf

  8. Sue, thank you for such a brilliantly written piece. It's made me think that we need to stress that we're in favour of welfare reform in the sense of improvement - bettering the lives of all people with disabilities and/or illnesses and removing unnecessary layers of bureaucracy - whereas this and the previous Governments have concentrated on reform in the sense of cost-saving -
    bettering the lives of SOME people better at the expense of others and outsourcing some layers of bureacracy at vast expense and controversy.

    I hope that makes sense - brain-fog is descending...