Landmark moment as Parliamentary report recognises energy limiting conditions.

ELCI

The Parliamentary Office of Science and Technology has published a seminal briefing on invisible disabilities in education and employment. Chronic Illness Inclusion contributed to the report which discusses the experience of adults with invisible disabilities.

It is estimated that 70-80% of disabilities are invisible and there are a wide range of impairments or conditions not necessarily visible to others.

Such conditions may include: mental health conditions; autism and other neurodivergences, cognitive impairments; hearing, vision and speech impairments; and energy-limiting conditions (such as fibromyalgia).

The briefing highlighted that lack of understanding and stigma from others creates consistent barriers to people with invisible disabilities. It commented that many of those with invisible disabilities are often unsure whether to disclose their disability, because they are worried about disbelief, stigma, and confidentiality.

Recommendations made by the briefing included:

  • Deconstructing societal barriers for people with invisible disabilities, which would enable them to participate in civil life, including work and education, which would have significant social and economic benefits.
  • Improving awareness and understanding of invisible disability to help to reduce stigmas and exclusionary practices.
  • Adjusting the structures or organisations and programmes to help people with invisible disabilities access support.
  • Updating policy and guidance with examples of less recognised invisible disabilities and examples of non-physical reasonable adjustments.
  • Encouraging flexible working and learning arrangements, which could improve access to work and education.

Chronic Illness Inclusion is encouraged by this report and was delighted to have contributed. You can download the full report here.

 

 

Two million disabled people cut out of pandemic benefits uplift

ELCI

Two million disabled people have been cut out of receiving the £20 weekly benefit uplift, after the Court of Appeal ruled in favour of the Department of Work and Pension’s (DWP) exclusion.

The Court of Appeal held that the £20 uplift given to universal credit claimants and not those on legacy benefits was lawful.

In November 2021, four legacy benefit claimants brought a case to the High Court to fight this discrimination, and the case went to the Court of Appeal after the High Court ruled against the claimants.

Whilst the Court accepted that there were a greater proportion of disabled people claiming legacy benefits than universal credit, it refused to rule that the exclusion was discriminatory.

The DWP justified it’s decision by claiming it was needed to prevent newly unemployed people developing ‘dependence on welfare’ rather than to protect claimants from hardship.

The Court accepted this despite the glaring contradiction that all universal credit claimants were given the uplift, not just those who had recently lost their jobs.

Fran Springfield, Co-Chair of Chronic Illness Inclusion commented:

“We are outraged and devastated at the ruling on the legacy benefits uplift case by the Court of Appeal. The outcome is an affront to disabled people, including those with chronic illness. Many of us were denied emergency financial support when we needed it the most, and this discrimination should not be left unchallenged. We offer our heartfelt solidarity to the claimants who sought to bring justice for many disabled people throughout the UK.”

 

‘The Submerged Body’ – free nature writing workshop available online now

Chronic Illness
A screenshot from the workshop showing a prompt slide and Jane Hartshorn

Chronic Illness Inclusion was proud to team up with the Moving Mountains project to host a free online nature writing workshop led by poet Jane Hartshorn this month.

Supported by The Wren Project, the workshop received over 160 signups and saw attendees led through a series of thoughtful writing prompts, aiming to explore how writing about water can help us explore the experience of living in a sick body.

Jane Hartshorn drew on her PhD research at the University of Kent to highlight writers such as Abi Palmer, Nan Shepherd and Elizabeth Jane Burnett, and folklore such as the selkie myth, moving away from traditional religious ideas of water as curative, or capable of bringing about instant salvation, and towards water’s ability to generate more complex understandings of the body and its transformations, more suitable for those of us living with fluctuating chronic illness.

The workshop was funded by Arts Council England, part of a series of workshops run by writer and artist Louise Kenward as part of her project Moving Mountains, which will also see the publication of an anthology of nature writing by sick and disabled writers.

The Submerged Body: Writing Water and Illness, can now be viewed below and on YouTube with full subtitles.

Louise Kenward is writer in residence at Rye Harbour Nature Reserve, and invited those who enjoyed the workshop to sign up for the Rye Harbour newsletter, which also aims to support chronically ill and disabled people in connecting with nature.

The Wren Project, which offers free listening support to people with autoimmune conditions, invited attendees to join another online free event next month, a participatory theatre project exploring the difficult question ‘How Are You?’.

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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.

 

The wilderness of medically invisible disability

ELCI
The Wilderness of Medically Invisible Disability. Portrait photos of speakers Catherine Hale and Alison Allam

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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Act Now on disability poverty

ELCI
Join the Disability Poverty Campaign. Write to your MP using our campaign too. Demand an emergengy uprating of benefits of at least 8% to match inflation

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.

» Read more

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