Archive for August, 2012

It’s difficult to know how to participate when your ability to focus is extremely limited. How do you get involved and sustain that involvement for any significant measure of time when getting out of bed or managing to get something to eat is the most challenging thing you’ve ever done…every day.

It’s the crux of the problem… isn’t it? … Its something that has stifled the voice of the long term chronically sick and disabled for generations. Historically the sympathetic fit and the disabled fought for the rights for themselves and for the rights of those who were, too disabled or too sick to fight for themselves. How has this changed or more importantly how can we embrace that change?

For the first time people who can only manage to campaign for short periods of time are doing so, insomniacs are campaigning in the wee small hours… The chronically fatigued and those with chronic pain campaign in short burst’s… The housebound only bound in body, exploring the world of the net getting the word out across the globe about what’s happening here. There will be nowhere to hide for those responsible when the reckoning comes, as it inevitably will.

So here we are with the technologies at last to get involved in a way that has finally solved the disability campaigners and activist puzzle. A technology that made campaigning possible for those that have lost so much. Their health, their mobility, their ESA, their friends, their families and their lives… suddenly find themselves with a voice. A voice that began slowly encouraged by Facebook groups like DPAC and UK Uncut among others. Which was amplified by the twitter campaign that launched the Responsible Reform Report. These campaigns have led to a blossoming of sick and disabled people wanting to be involved whether by direct action in their communities like the Worcestershire campaigners, activists and disabled people who recognised the danger and came to the various groups within the disability community and said we need help! Or the vast numbers of online campaigners and activist’s that by dedicating what little time they have to campaigning trying in desperation to get the public to understand what is happening to thousands and thousands of people who are having they’re only life line ripped from them. Sue Marsh calls this “bed-tivism” I call it ‘despite-tivism’ despite everything we fight, because we have no other choice.

We have the tools and I’m not talking about Facebook or Twitter I’m talking about the hundreds of individuals that create the disability community, Twitter and Facebook are just technology. The community IS the tool we need to change the way people view us forever.

So how do you harness that desire how can the disability community work together to change things for the better not for one campaign or one report however successful, not for one protest but for the long term…? What are the tools that are required to take our individual participation and transform it into a community wide voice that will educate a generation in the language of disability, so this demonisation of vulnerable people can never happen again? A community so strong that no discriminating voice can overwhelm us.

Well, that requires several things, firstly a recognition of our own possible part in that, were we complacent? Had we become so used to letting others fight our battles that we forgot to fight for ourselves? And if not, then we should celebrate the achievements of disability campaigning past, and look at how to modernise it to be effective long term in the new age of modern activism.

Secondly it requires us to see our community for what it is, a gaggle of angry, frustrated, frightened, wounded people that are working together through sheer necessity, and like any diverse community we, in fight, we don’t agree on approach, we dislike each others methods and we don’t want amateurs paddling in hard won paddling pools. But we are also strong, determined, diverse in our approaches which covers more ground, Experienced in a vast array of life experience that brings fresh eyes to how things can be done. And at last we are vocal not just in a holding placards, chanting slogans sense of the word but in an intelligent measured responsible sense of the word to. If for a moment the different groups where blurred in to one community and we could see the effects of that community I think even our Government would be worried. And although what is happening is having an effect how much more effective would it be if it was one community with lots of arms rather than lots of groups that have their own branches of the community?

Thirdly and the hardest of all is the possible long-term goal, one that should move beyond only welfare. Because welfare is just a symptom of a more insidious truth, people who have not experienced disability or chronic ill health at close range do not understand us.  That is the real battle, the government would not be getting away with murder if, every citizen knew a disabled person well, if their children knew us. By which I mean If you cant stand as a MP candidate help find someone who can and support them, if you cant get involved in your local council help find someone who can and support them. Helping those with disabilities that can be more active and more visible in the community such as working in the WI or volunteering to help in after school clubs, is as vital an act of campaigning as the ones that have blossomed on line and should become part of the next phase of disability activism.
Quite simply this is the nature and level of participation we need, to unify our support for each other to create the possibility of participation in the wider community by harnessing the tool that is the disability community to educate a generation.

Working together community evolves…

Just my ramblings on it anyway… Dxxx

Ed Miliband has responded to the letter that I haven’t yet given him (!). I am not impressed. There will be a response to this even though he has made himself very clear that he supports WCA. I believe everyone who signed the original letter has a right to see his response…and so here it is…some of you may want to take a deep breath before you go any further.20 August 2012

Dear Ms Poulton,

Thank you for your correspondence regarding the Work Capability Assessment, and
my apologies for the delay in replying.Disabled people need support and compassion, and the Labour Party believes in a
welfare state that fulfils this principle. The previous Conservative Government took
the opposite approach and left many disabled people on Incapacity Benefit with little
support to return to work where possible. It is also important to separate out ill health
and disability from the decision not to work, which is taken by a distinct minority.

For these reasons, the previous Labour Government introduced the Work Capability
Assessment, and I am supportive of the principles behind this test.

However, I share some of the concerns that have been expressed about the test by
you, along with many charities, disability groups and healthcare professionals.

These concerns, the high percentage of appeals, and Professor Malcolm
Harrington’s expert reviews have shown that the test must be improved. The Government needs to listen to Professor Harrington’s advice, especially when his
third review for 2012 comes out.

We have also forced a vote in Parliament on the need to reduce the human cost of
the wrong decisions that result from the WCA in its current form.

Given the importance of this issue, I am keen that you discuss this further with the
Labour Party and share with us some of the experiences of people going through the
WCA that you have collected. Anne McGuire, my Shadow Minister for Disabled
People, would be happy to arrange a meeting in order to do so. Please contact her
on ********** to arrange a convenient time.

Thank you again for taking the time to get in touch on this issue.

Yours sincerely,
Rt Hon Ed Miliband MP

 This letter is now closed to comments, if you haven’t had you comment approved yet don’t worry as I’m copying everything to give to sonia its taking a little time to copy and approve everyone but it will be done before the letter goes to mr Milliband… Thank you everyone for your support… Dxxx

Dear Mr. Miliband,

I am a UK-based journalist and broadcaster. Here is a link to my website.

On my site you will find all the media outlets that I contribute to across print, TV, radio and internet, nationally and internationally.

I am prompted to write to you having just watched these two programmes on the subject of ‘fit to work’ testing for sick and disabled people: Channel 4’s Dispatches (‘Britain On The Sick’) and BBC2’s Panorama (‘Disabled or Faking it’).

This year, as a writer, I have been made painfully aware of how distressing, unreliable and costly – both physically and emotionally – the Work Capability Assessment is for those undertaking it.

The financial cost to the country is another concern altogether.

I am aware that Employment minister Chris Grayling has made much capital from blaming Labour for the introduction of this system, administered by ATOS. Equally, Mr. Grayling has made it clear that he views the Coalition’s implementation of the process as preferable, and less harsh, than that carried out under the Labour government.

WCA, clearly, is beset with problems. The ATOS assessor, captured undercover in C4’s programme, referred to it as ‘Toxic’. It was made clear that it was designed to reduce benefit recipients. Chris Grayling continues to deny there are targets. I am less inclined to believe him.

The test, at best, is unquestionably inadequate and not fit-for-purpose. Even the Government’s own adviser, before he resigned, described it as ‘patchy’. At worst, it is downright disadvantageous to those who are subject to it.

For many people the horror of the ATOS test has been the worst kept secret for years. Sadly, others have been less fortunate and are no longer here to register their misery. There currently exists a known demographic of people who have died after being found ‘fit to work’. Are you aware of this?

This year doctors at the British Medical Association have opposed WCA. Those who endure it have opposed it. Even the occasional newspaper and TV programme dares to oppose it. As a Social Commentator, I certainly have.

Why, then, has Labour – under your leadership – not opposed it? Should I assume that you support it?

I am disturbed by what I view as a dangerous trend in our country. There is a clear demonisation of sick and disabled people, routinely labelled as ‘scroungers’ by the media, and driven by frequently skewed statistics issued by the DWP.

Meanwhile, the incidences of attacks on sick and disabled has risen. Disabled people are more in fear for their safety than at any other time in recent history. I believe that there is a direct correlation between the resentment whipped up about ‘spongers’ and the physical assaults taking place.

Surely this is not acceptable to you. It certainly isn’t acceptable to me.The names listed below this letter are from people who support the core message contained within it. Like me these are concerned citizens. Some are directly affected by issues of sickness and disability, others are not.

For my part, I am healthy, able-bodied and work full-time but I believe it is my duty to support those who need help. I believe that is a duty of us all. Including the Labour party.

Sickness and disability can happen at any time and to any one of us. I would like to think that others would also support me in my hour of need.

I believe what we need in this country is more compassion, not less. The WCA is unacceptable for a progressive country and it is a clear failure. The money spent on the appeals process confirms that, quite aside from the human misery it costs.

I have just heard that Tom Greatrex, MP, has secured a Westminster Hall debate on September 4 with regard ATOS and WCA. I ask you, Mr. Miliband, can we count on you to take a long overdue stance in support of our sick and disabled?

I do hope so. I look forward to your response.

Best wishes,

Sonia Poulton

If you add your name and post code in a comment I will make sure Sonia gets it …  I decided not to delete the whole post as there are comments that should be seen, All the post codes have been deleted…, Thanks and well done everyone… Dxxx


Spoke with Ed Miliband’s office again…said I literally want to be able to hand him the letter and then leave him with it…said it represents thousands of people who have been let down by this Coalition…said I could be there with very little notice at all…they said they have to find out his holiday arrangements and they will get back to me…