Way back in May 2011 I wrote this post about living with a long term illness or disability and working. Here's an excerpt :
"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."
The consultation was my most successful to date with over 400 responses. Some brilliant ideas came out of it, a real picture of how work fails us.
Since 2011 I've been working to try and put shape to your experiences and put together a report that looks at work and long term illness or disability from the perspective of those who really know. You. It will offer real solutions, not just empty criticisms. It's nearly finished and will be submitted to the Labour Policy review, the taskforce on disability and poverty and Liam Byrne's office.
This will be my focus for the next few weeks. I will be publishing a survey for you to fill in and asking you to feed into the report as much as possible. It's clear that increasingly, society must find a solution to this problem - and left unguided, the evidence shows that those solutions will be punitive, ignorant and damaging. We have a chance to be heard, to re-frame the debate. As I write, many similarly misguided politicians and academics are trying to solve problems they can never comprehend.
In the comments beneath this article, please leave your stories - did you work? How long for? What work did you/do you do? Did it become impossible? What support did you get when your illness or disability limited your ability to work? Did it help? What do you feel able to do now? Could you work at all? What kind of work could you manage? What is the ideal solution that would enable you to do some work however little? What stops you from doing any work at all?
Every story you share brings us closer to solutions. Every one of you who takes part will know that we did everything we could to change a system that is hurting us, degrading us, abandoning us.
Please help me to get this right. Because you can be very sure others will not ask you. Yet again, they will design systems based on air, policies based on ideology.