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The future of assessments and social security for disabled people

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This is a slightly edited version of notes for a presentation to the ESA roundtable meeting chaired by John McDonnell MP on 29th November 2018. The content is based on previous research work with Spartacus Network, independent research into ESA and the WRAG, research on Access to Work, as well as current research with the Chronic Illness Inclusion Project. The current benefits system was identified as the biggest source of social oppression faced by CIIP participants. We recently completed focus group on designing better social security for people with energy-limiting chronic illness.

Introduction The first part of this presentation is four main principles for a new assessment framework. A set of tests that any new system must meet if it is to restore the Human Rights of disabled people. The second part covers points for further discussion. Highlighting areas of current debate and disagreement.

Principles 1: Overturn the ideology behind the Hostile Environment, restore dignity and res…

And now, for my latest trick

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I am the lucky owner of a fab new powered wheelchair. And my new trick is that I am an ambulatory wheelchair user.

That means, sometimes you'll see me sitting in my wheelchair, and sometimes you'll see me walking.

This causes a great deal of social awkwardness, consternation and even shock. People seem to think I'm leading a double life. So I'll explain how it works.



If you see my in my chair, thank you for your concern, but I have not just had an accident or broken any bones. And, thankfully, my condition is no worse than it has been for the past few years.

If you see me walking, I have not suddenly been graced by a miraculous recovery. I still have the same crappy chronic illness I've had for 30 years. Neither am I using my chair to get attention or to pretend to be more disabled than I am in order to get some kind of advantage over everyone else - like a parking spot or a free ride.

No. I use my powerchair in the same way people use their car - for greater freed…

A Hostile Environment - briefing to Labour on DWP's treatment of disabled people

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Briefing to John McDonnell MP, Margaret Greenwood MP and Marsha de Cordova MP on my research into disabled people's experiences of conditionality and sanctions

A Hostile Environment - my personal story

In 2014 I had my benefits, my main source of income, stopped for almost 3 months. I was a single parent and I was receiving disability benefits because I was assessed as unfit for work due to chronic illness. What happened to me is known as a sanction. I want to tell you about the impact it had on me, not just because it was one of the most stressful and distressing times of my life, (worse than divorce), but because my case is shockingly commonplace and could be on the increase with the introduction of Universal Credit.

The reason I was sanctioned is that I couldn’t physically do the activities I was being forced to do. My chronic illness causes severe exhaustion and very poor stamina. But throughout 2013 and 2014 I kept receiving letters compelling me to attend employability workshops for 18 hours a week, which involved an hour’s journey, including a ¾ mile walk, each way, three days a week. Each letter threatened that my benefits could be cut if I didn’t comply.

I’m not a natura…

Reclaiming Chronic Illness - a discussion paper

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An Introduction to the Chronic Illness Inclusion ProjectForeword by Dr Simon Duffy, Director, Centre for Welfare Reform  "I must admit that I had no understanding of the reality, severity and widespread nature of chronic illness until very recently. It was only as we began our own efforts to combat the UK austerity programme, which began in 2010, that we discovered that many of those people we were fighting beside were people with a chronic illness. And, it was only by listening to their experiences that I understood that there were layers of injustice that I had never truly appreciated."
Introduction
A key aim of the CIIP is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or dis…

Stop Changes to Access to Work

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On Tuesday 24th October, campaigners, service users and MPs gathered at Portcullis House to launch ‘Barriers to Work’ – a report authored by Catherine Hale and commissioned by Inclusion London, based on a survey carried out by the StopChanges2AtW campaign.

‘Barriers to Work’ looks at what happened with Access to Work and how can the scheme be once again fit for purpose.

The meeting was chaired by Debbie Abrahams MP, Shadow Secretary of State for Work and Pensions and Sean McGovern, co-Chair of the TUC Disabled Workers’ Committee. Ellen Clifford from the StopChanges2AtW campaign introduced the recommendations for improving Deaf and Disabled people’s experience of Access to Work.


#MillionsMissing protest London 12.05.17

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My address to crowd outside Department of Health, Whitehall
Our small gathering here today is just the tip of the iceberg.

We are standing in for the Millions Missing worldwide: the millions of people affected by the multi-systemic disease ME aka chronic fatigue syndrome who are too ill to be here today.

There are 250K people in the UK with ME and many can’t be here because they've been trapped in bed for years by this most crippling of illnesses, and they’ve been abandoned by our healthcare system and forgotten by the world.

The shoes you see here belong to some of those who can’t be here in person but who want you to hear their voice and witness the injustice they face. And they want the Dept of Health to listen and to act on this injustice.

The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today.

But here in the UK we’ve endured something perhaps even more cruel than n…