{"id":25780,"date":"2020-05-01T10:46:45","date_gmt":"2020-05-01T10:46:45","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=25780"},"modified":"2020-05-01T10:46:45","modified_gmt":"2020-05-01T10:46:45","slug":"report-energy-impairment-and-disability-inclusion-towards-an-advocacy-movement-for-energy-limiting-chronic-illness","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/report-energy-impairment-and-disability-inclusion-towards-an-advocacy-movement-for-energy-limiting-chronic-illness\/","title":{"rendered":"Report: Energy impairment and disability inclusion: towards an advocacy movement for energy limiting chronic illness"},"content":{"rendered":"

Energy impairment and disability inclusion: towards an advocacy movement for energy limiting chronic illness<\/a>, by Catherine Hale, Stef Benstead, Jenny Lyus, Evan Odell and Anna Ruddock. Centre for Welfare reform: April 2020<\/h3>\n

 <\/p>\n

DRILL Blog post<\/strong>:\u00a0Energy impairment and disability inclusion \u2013 report by the Chronic Illness Inclusion Project<\/a><\/h3>\n

If you ask someone living with a debilitating chronic illness if they consider themselves to be disabled, you often get a \u201cyes but, no but\u201d kind of reply.<\/p>\n

If you dig deeper, you may find their ambivalence is not so much because they see disability in negative terms. It\u2019s often because they don\u2019t feel entitled to the status of a disabled person.<\/p>\n

People with invisible chronic illness<\/strong> typically experience hostility when positioning themselves as disabled \u2013 claiming disability benefits or using accessible toilets, for example. Whether from friends, acquaintances or impersonal bureaucracies, the response ranges from subtle expressions of disbelief to overt accusation of faking or attention seeking.<\/p>\n

As someone living with chronic illness it took me almost two decades to shake off the pervasive sense of \u201cfeeling like a fraud\u201d if I identified as disabled. The research\u00a0conducted among my peers with the Chronic Illness Inclusion Project (CIIP) has opened my eyes to how widespread this phenomenon is.<\/p>\n

The CIIP<\/a> is part of the DRILL programme<\/a>, hosted by the Centre for Welfare Reform<\/a>. Our aim was to reach out into the digital world of our own chronic illness communities, and bring those voices and experiences into spaces where they are not normally heard.<\/p>\n

Our report\u00a0Energy impairment and disability inclusion<\/a>\u00a0suggests that this hostility towards invisible chronic illness is linked to an apparent gap in the language of disability and impairment for describing our bodily experiences. Organisations of and for disabled people rarely refer to \u2018chronic illness\u2019 in the way we do. And government systems of disability assessment don\u2019t have tick boxes for our recording our experience.<\/p>\n

The CIIP combined in-depth focus group research with a survey gathering over 2,000 responses. Across a wide range of reported diagnoses and disease groups, respondents reported that pathological fatigue, or energy limitation, was the most restricting feature of their condition, closely followed by pain.\u00a0\u00a0\u00a0 Read more<\/a><\/p>\n

\"\"<\/p>\n

CIIP Blog post:<\/strong> Bridging the chronic illness community and the disability rights movement<\/a><\/h3>\n

The CIIP conducted extensive research among the online chronic illness community in 2018. We pioneered an internet-based focus group format that allowed people to participant in in-depth discussions over an eight-week period from their home. And we ran a survey attracting over 2,000 responses.<\/p>\n

Our findings include:<\/p>\n