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Sickness and the Social Model of Disability

This is the first part in a series of blog posts that will explore the uneasy relationship between chronic illness and the social model of disability. From my perspective as a Sick person (more on that controversial word next time) I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model. But rather than reject the social model I’ll discuss how we, the Sick community, could claim it for ourselves and what a social model of chronic illness would look like. The crucial distinction between impairment and disability lies at the heart of the revolutionary Social Model of Disability that emerged in the 1970s – the model that underpins the disability rights and independent living movements. To paraphrase it simply, impairment is loss of bodily function, whereas disability is disadvantage imposed upon people with impairments due to hostile social attitudes or inaccessible physical environments. 

The politics of stigma with ME/CFS

Last month my “shocking” report with Action for ME, Close to Collapse was released, showing the massive failure of the UK social care system to meet the needs of people with the chronic illness ME (otherwise known by the dreadful term Chronic Fatigue Syndrome) For anyone new to M.E., forget the implication that we’re just “tired all the time”. ME is extremely debilitating, both physically and mentally. In fact, research shows the ME patient population has lower scores for physical function and quality of life of any chronic disease group . So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England.  Yet only 6% were receiving a social care package.  The news was not “shocking” to the ME community. Neglect, lack of support and even hostility from healt

The future of assessments and social security for disabled people

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 digni