Reblogged from Diary of a Benefit Scrounger:
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 [LINK], 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.
