Following up on my post about working with a long term illness or disability, I'm writing today to ask for your help.
I've devoted many months of energy to fighting the welfare bill but there is another fight I always believed we must fight.
The Great Employment Battle.
The stigma and sanctions and insults of the current welfare to work debate have made the very word "work" hold a certain terror. No more an aspiration or a dream, something we hoped for more than anything. Now, if you have a significant illness or disability, work is a threat, with the ultimate punishment of unlimited, unpaid labour.
I've read endless reports and policy papers discussing us and I find it hard to believe anyone with a fluctuating condition or complicated lifelong disability ever went anywhere near the processes. I see a bunch of zealous blue-sky-thinkers sitting around a table, designing a system with the worst of humanity in mind.
A lot of them don't seem to like us very much. They think we're "too stupid" (Field) "festering feckless stock" (Freud) I'm fairly sure Carol Black compared sickness and disability to a typhoid plague in a recent paper I read.
And because they don't like us very much, don't know who we are, don't live our lives, they do the only thing they know. They pick up a bigger stick to hit us with each time they get round that table.
I set out to shine a light on our lives and this is surely one of the most frustrating areas of living with a long term condition? It always was for me. I thought endlessly about it. How the benefit system was designed to keep me out of work. How no matter what I did, the sanctions of finding work were all so punitive, I could never dare try. The unpredictability of my attendance, the variability of my symptoms all meant sanctions just trapped me.
Why? Because all the schemes and policies were designed with the assumption that I could "work" like anybody else. I can't. Hence I can't work. The work is not flexible enough, attending an office reliably is too difficult, the business is given no protection from government for any extra costs they might incur by employing me. I don't mean for adjustments, I mean for extra time off or annualised hours contracts.
Businesses are neither incentivised or mandated to employ people with disabilities. No-one has ever had a sustained conversation with business about the benefits of employing people with long term conditions and disabilities, asked for their co-operation, built a coalition of companies prepared to make this a priority.
No-one has looked at our skills and asked how we might contribute to society - how we do contribute, every day - they have simply looked at the economy and asked why we are a drain on it.
And that's the key "When you design a system only to catch scroungers, it is the genuine claimants that suffer for the few. When you design a system to enable genuine claimants, it's easy to see who the scroungers are" (Kaliya Franklin)
Why can't we speak with our own voice on this? I think some will be sceptical, they will say that by entering this debate, we are conceding defeat. But that's only if you see the very nature of work as a battle.
If we reclaim the work debate, don't we have a unique chance to shape it? Don't we have a way of showing all these disdainful designers of our futures why and where they have got it all so very wrong?
We can research, we can look for interesting reports from other countries, we can think about our own barriers to work and design our own solutions. Whether or not anyone ever truly develops them in the full spirit we present them, they will be there, for the record. We will have had a chance to answer all those judgemental, ignorant voices. Not spoken for, not spoken to or at.
We can tell our stories, just as we have before. We can write passionately about our own attempts to work and how the system held us back and why. We can tell twitter and Facebook.
It's a brave thing to do. We've told our stories about benefits before and it was scary. By laying ourselves bare we knew we were taking risks. Telling our work stories in this climate holds a worse fear - that any evidence we have tried to work at all will remove our security - but that in itself is exactly why we have to tell them. Just the fact that we are frightened to, says everything anyone needs to know about how punitive and degrading the current system is.
If you want to join me with this, please, use the hashtag #DisabilitysNotWorking
Post on Facebook under the title "Disability's Not working"
Or write a Disability's Not Working blog or article.
Look for papers and research - the good and the bad. The more we know the more confidently we can challenge. Share anything you find or send it around a bit on Twitter and Facebook so that we all start to become as expert in sick and disabled people working or not working as we became over the Welfare Reform Bill 2010
But the last, most vital thing is to get the message through that some people will never "work" in the sense they mean at all. They will never be "economically active" or "sustainable" or "self-sufficient" or any of the other dogmatic, de-humanising labels they invent to coat the disability stick they hit us with.
But they will almost certainly "contribute" Some will spend 90 hours a week caring for an adult or child totally reliant on them for every basic human need. Some will write great novels from their beds or paint great art using their mouths. Some will philosophise and others will make beautiful music. Some will counsel, using their experience to help others through the incredibly difficult times long term illness inevitably bring.
Any system that recognises contribution must include all contribution. Reciprocity and Responsibility work both ways, whether a "Big Society" or a "Good Society" or "One Nation" they are simply empty words unless we find a way to value the many unseen, daily contributions that keep our country rich and safe, and better.
To politicians and media and think-tanks I say : If you tell the country we contribute nothing, that we are nothing, that we're worth nothing, can you blame them for believing it? Recognising all contribution tells the public that we really are "all in it together" and might just be a first step in showing the true value of our social security system, not just it's worth.