Month: August 2022

A change of leadership for Chronic Illness Inclusion

ELCI
Head and shoulders Photo of Catherine Hale

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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CII to host free online nature writing workshop with poet Jane Hartshorn

Chronic Illness, ELCI
Photograph of a woman underwater

CII is excited to be working with the Moving Mountains Project to host The Submerged Body, a free nature writing workshop with poet Jane Hartshorn on 23 September, 6-7.30pm.

I felt my body reaching for water as an element of transformation, invested with the power to remake me in a form that I could choose myself.

– Samantha Walton, ‘Everybody Needs Beauty: In Search of the Nature Cure’

Water runs and flows. Its shape is never set, is always in flux. Even within the basin of a loch or pond, the confines of sea or river bed, or the slippery sides of a swimming pool, water moves and eddies, has the potential to spill beyond the shape that carries it.

In this creative writing workshop, we will draw from examples of watery writing in literature to explore the submerged body. We will examine how these descriptions may resonate with what it feels like to inhabit a sick body, and how we might use the transformative power of water to write about the experience of illness.

Jane Hartshorn is a poet and PhD candidate at the University of Kent, writing about the lived experience of chronic illness. Her pamphlets include Tract (Litmus Publishing, 2017) and In the Sick Hour (Takeaway Press, 2020). She has had poems published by Boudicca Press, Dostoyevsky Wannabe, Lucy Writers and SPAM and is an editor at Ache Press. She is on Twitter @jeahartshorn.

For more information, and to register, visit The Submerged Body event page.

The workshop is supported by The Wren Project, which provides free listening support for people diagnosed with autoimmune disease in the UK, and funded by Arts Council England.

Image: Stefano Zocca via Unsplash

Disbelief and Disregard

ELCI
Disbelief and Disregard: gendered experiences of ELCI in England. A partnership between Chronic illness Inclusion, Liverpool University and Liverpool Hope University. A research project funded by British Academy/Leverhulme

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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Energy-limiting conditions and Human Rights

ELCI
photo of Leonora Gunn wearing a graduation gown

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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ELCs and Human Rights

ELCI
UNCRPD Shadow Report: Chronic Illness Inclusion full submission

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.