Author: catherinehale3394

Stepping down as Director of CII

Catherine Hale writes:

Five years after I founded Chronic Illness Inclusion I am stepping down as Director of the organisation. CII started life as a research project, but it was always imagined as more than a one-off project. From the start, it was about building a platform to have our voices heard by professionals and policy makers. It was born from my sense, back in 2016, that the chronic illness community and the disability rights movement were too far apart. And from the realisation that this made it too easy, in times of austerity, to exclude chronic illness from systems of disability support and rights. As an advocacy movement, we exist to combat the idea that chronic illness is not a ‘proper disability’.

It was clear from the research that people saw CII as a ‘voice in the wilderness’, and that our work needed to continue. So, after the research funding ended in 2020, the Advisory Group formed a user-led Disabled People’s Organisation, joining networks of other DPOs. For two years we have continued to represent and advocate for people with energy limiting conditions (ELCs) and chronic illness, with almost no funding. We have explored partnerships to enable us build and grow the organisation. This is still a work in progress and I’m very grateful that others in CII have the passion to take it forward.

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A research project on gendered experiences of energy-limiting chronic illness (ELCI) in England

Context

The Disabled People’s Organisation Chronic Illness Inclusion (CII) have developed the term Energy Limiting Chronic Illness (ELCI) to allow for collective advocacy work across conditions in which people experience impairments in energy/stamina/breathing/fatigue such as neurological, musculoskeletal, auto-immune diseases, ME/CFS, fibromyalgia and Long Covid. Through vital research on ELCI, CII have also developed the term ‘systemic disbelief’ to identify the culture of disbelief and disregard that is encountered by people with ELCI in interactions with a range of institutions: healthcare, work, welfare, social services, leisure, etc. This disbelief creates barriers to equality and inclusion for people with ELCI, and relates to even fundamental disagreement over whether conditions are biophysical or psychosomatic.

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Earlier this year, Disabled People’s Organisations gave testimony to the United Nations about the UK government’s progress, or lack thereof, in implementing our human rights. Chronic Illness Inclusion’s testimony was part of this report, but now we can share our full, unedited submission. Lead author, Leonora Gunn, explains the process and the key evidence we gave on behalf of people with energy-limiting conditions and chronic illness.

Some background: What is the UNCRPD? And what is a ‘Shadow’ Report?

The United Nations’ Convention on the Rights of Persons with Disabilities    (UNCRPD) is the first international treaty to enshrine in law the full human rights of all disabled people. It was drafted through an unprecedented process of collaboration between the United Nations, disabled activists and Deaf and disabled people’s organisations from all over the world, and was ratified by the UK Government in 2009.

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Chronic Illness Inclusion’s submission to the UNCRPD Shadow Report

Read our full submission to Inclusion London on how the rights of people with energy-limiting chronic illness (ELCI) have suffered in relation to healthcare, social protection, accessibility, work and employment, situations of humanitarian emergency, and more.

Click here for a pdf version of the report

Click here for a MS Word version of the report

Read the blog post by lead author, Leonora Gunn.

Disbelief and disregard in relation to medicine, chronic illness and disability

This video, with transcript below, was part of a webinar held by Liverpool University on 24th May 2022.

Transcript

Hi, I’m Catherine Hale. I’m the Founder and Director of Chronic Illness Inclusion. My colleague Alison and myself are very excited to be embarking on a two-year research project, a collaboration with Bethan Evans at Liverpool University and other colleagues. My colleague Alison is going to talk you through the research on healthcare experiences of women with chronic illness, chronic pain and other energy limiting conditions.

This research was the catalyst for the project that we’re going to be embarking on. But first I want to give you some background on why this research was so important to our community. So the title of our talk, “The wilderness of medically unexplained, [sorry] medically invisible disability” is taken from an article in the British Medical Journal by Lisa Steen in 2016 and her article was called “The wilderness of the medically unexplained”.

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by Joel Lamy

The other day a work colleague told me she had finished at 5pm, instantly fell asleep then woke up just in time to start again the next day.

She has a hidden disability – and her experience is not unique – for many, the need to work full-time leaves them shattered and without the energy to even cook their food, never mind leave the house.

Not only is this an isolating and mentally-draining experience, it also means higher fuel energy usage – a problem when bills are soaring and unlikely to come down any time soon.

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Our mission at CII is to shape policies, perceptions and practices to improve the lives of people with energy limiting conditions.

Our vision is a world in which our experience of disability is heard, believed and understood, our rights as disabled people are upheld, and our lives have equal value.

We took a look back at everything we did 2021 to realise this vision and take forward our mission. Bearing in mind we are a grassroots organisation, run entirely by volunteers living with chronic illness and energy limiting conditions, we have a lot to be proud of.

Here’s a round up of our activities over the year:

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