The reality of long term sickness and disability


When Jon asked me to write an article about social security for sick and disabled people I’ll confess, I was daunted.

To discuss something at all, one has to first know what it actually is. I mean, I couldn’t talk to you about chocolate if you were convinced that chocolate was green and something you use to clean drains. First I’d have to convince you that it was in fact brown and sweet and used as a panacea for all kinds of female misery.

So before I can talk to you about disabilities and the provision we make in this country for the people who live with them, I have to disabuse a whole basket full of myths.

We don’t get free cars.

Or bungalows.

A full third of sick and disabled people live in poverty.

Over 10 million people in the UK have a long term condition or disability and 60% of them work, though we are much less likely to get a job than you are.

The benefits we pay in the UK are some of the lowest in the developed world (yes, the lowest) and we have the toughest eligibility tests (yes the toughest). The numbers of people on out of work sickness benefits has been falling steadily for 15 years, not “spiralling out of control”.

Fraud for both sickness and disability benefits is the lowest of any benefit at just half of one percent (yes, the lowest) and out of work benefits make up a tiny proportion of the welfare budget, totally dwarfed by pensions and tax credits.

Living with a horrible painful or frightening condition is no fun at all. It is never a “lifestyle choice”. No-one chooses to get cancer just to claim a paltry £95 a week or asks to be paralysed in an accident so that they can get a blue badge.

But here’s the biggest myth of all. I’m sorry to have to tell you this, but it isn’t “them” it’s “you”.

For every three people that read this article, one will get cancer. For every four that read, one will suffer mental illness. And every last one of us will get old and need to rely on others to live with a little dignity. Serious, life limiting illness or sudden disability can – and does – happen to anyone at any time. It is no servant of wealth or power. We will all need our bottoms wiped, or our food cut up at some point.

Of course, even now I’ve set the record straight, you would have to accept that all of the things I just told you are true. I know everything you ever read in the papers or see on the TV contradicts what I’m saying, but there we are.

The solutions to the REAL problems sick and disabled people face are not solutions anyone is ready to hear. The myths are so well entrenched, so commonly held, that like Oliver Twist claiming his hunger could be fixed with a little more food, I would be laughed out of town.

Sick and disabled people in the UK need much higher levels of benefit to live on if they are found incapable of working. It is a disgusting indictment of what the UK has become today that we allow people with serious and profound disabilities to sit in their own filth, go hungry and cold for want of a decent basic living standard.

Anyone who faces significant barriers to work due to a lifelong health condition or disability, needs benefits that are utterly flexible that they can take with them through a lifetime. They should be able to dip in and out of work quickly and easily with as little paperwork as possible.

We might consider a single assessment that looked holistically at ALL the support a sick or disabled person might need to level the playing field with non-disabled peers. (Not better it you note, just level it.) Preventative joined up healthcare, social care and mobility needs and other disability related costs would all be taken into account and simply adjusted with any changes in circumstance.

A single assessment should involve an independent specialist in the claimant’s condition, a healthcare professional of their choice and a DWP decision maker. Together, they should consider all of the evidence a claimant submits.

The whole attitude and approach to social security for sickness and disability needs to turn upside down from judgemental to informed, cold and impersonal to encouraging and supportive.

A scrounger narrative combined with horrifying sanctions and threats, needs to be replaced immediately with respectful and informed cross-party and public debate.

Access must vastly improve and we must start to enforce existing laws that insist society make their buildings accessible.

Sick and disabled people need totally flexible work and more home working.

There should be an equivalent excellence branding to Fairtrade for products made and designed by disabled people and an online marketplace, with business support , to sell them through.

And finally, if we are to re-invent a contributory social security system based on “responsibility and reciprocity” it is not enough to only consider the limited contribution of paid work.  An army of volunteers and carers keep this country healthy and safe, saving the economy tens of billions every year.

A society that doesn’t reward these contributions in any way dare not preach of reciprocity and contribution.

Sue Marsh writes the Diary of a Benefit Scrounger blog.

This piece forms part of Jon Cruddas’s Guest Edit of LabourList

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