CII were recently invited to give evidence to the House of Commons Work and Pensions Committee. This is the first time that evidence has been specifically sought from people living with energy limiting chronic illness – ELCI.
You can watch our Director, Catherine Hale giving evidence on YouTube.
Catherine’s speech begins approximately 1 hour and 7 minutes into the recording.
Our latest policy report on ELCI, employment and social security
The ‘I already have a job…’ report, by Catherine Hale (CII), Stef Benstead (CII), Dr Kate Hardy (Leeds University Business School) and Dr Jo Ingold (Deakin University), sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).
Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA).
Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.
Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.
Chronic Illness Inclusion spoke at an event hosted by Disabled People Against Cuts to discuss the need to reinvigorate the social model of disability.
This blog piece follows a discussion on the 6th of July 2020 in response to Ellen Clifford’s new book ‘The War on Disabled People’ from Disabled People Against Cuts (DPAC) about ‘Reinvigorating the Social Model of Disability’, to which Catherine was invited. You can watch Part 1 here and Part 2 here.
We completely agree with Ellen Clifford that the social model of disability is intended to be a tool for uniting disabled people to take collective action. Now is a time for such unity if ever there was one. The global response to COVID-19, on top of ten years of austerity in the UK, has shown just how little disabled lives matter to the political classes. However, people with chronic illnesses have struggled to unite with other disabled people under the banner of the social model.
Catherine founded the Chronic Illness Inclusion Project as a programme of action research aimed at developing an advocacy movement for people with chronic illness. The project discovered that, although people with what we call ‘energy limiting chronic illnesses’ (ELCI) are potentially a big constituency of disabled people – 32% of working age disabled people in the UK experience impairment of stamina, breathing or fatigue – there is a disconnect between us and the rest of the UK Disabled People’s Movement (DPM).