When I started this 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.
I 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"
I 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?
"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