ELCI, energy impairment & disability

Chronic illness is a type of disability

Chronic Illness Inclusion estimates that 1 in 3 disabled people in the UK lives with energy-limiting chronic illness (ELCI) or energy impairment.

We believe that chronic illness and disability are not two different states. Rather, ELCI is a type of disability, and people with ELCI have rights as disabled people.

Our 3-year participatory research programme with the chronic illness community revealed two key findings:

1) We are a discrete group of disabled people with a set of needs that is distinct from other impairment groups, and:

2) We share a distinctive experience of ableism or disablism.

However, many people with ELCI don’t identify as disabled. Our research shows this is partly due to ableist attitudes towards fatigue and pain. We think that these attitudes are rooted in systemic disbelief of our experience.

Our work has involved lobbying the government to include ELCI and energy impairment in the collection of disability data and in all areas of policy making concerning disability.

We have much more work to do to challenge the ableist attitudes and practices of disbelief and invalidation that diminish our lives.

Explaining ELCI and energy impairment

 

We use the umbrella term ELCI for conditions where energy impairment is a key feature. These include fibromyalgia, ME/CFS, lupus and long Covid, as well as a range of neurological, musculoseletal, auto-immune and respiratory diseases.

 

There’s a reason we call it energy impairment, and not just ‘fatigue’…

Read more about ELCI and energy impairment and why we use these terms

Research report

From 2017 to 2020 we involved the chronic illness community in a major research programme. This was part of the DRILL programme of disabled-led research. Our aim was to learn more about what joins the online community together us, and how we can have our voice heard beyond our online networks. We conducted a survey of over 2,000 people with chronic illness, and we held very popular online focus groups that were specially designed to accommodate fluctuating illness, cognitive dysfunction and the need for remote participation.

Our research report, Energy impairment and disability inclusion, sets out the evidence for considering ELCI as a cohort of disabled people. We found that people with a wide range of different diagnoses share a lived experience of chronic illness that goes far beyond ‘fatigue’. We developed the term ‘energy impairment’ to describe this experience. Our research also highlighted the social oppression encountered by disabled people with ELCI. Much of it is rooted in attitudes of disbelief towards our bodily experiences, and based on the assumption that ‘fatigue’ is a universal state, not a type of impairment. This can manifest in blaming us for our condition, in disability denial, in suspicion of ‘faking’ disability and in hostility when we identify as disabled. Internalised disbelief can profoundly damage our sense of self and prevent us from flourishing as disabled people. 

Read the full report in pdf

Click here for Easy Read version

Click here for Word version accessible to screenreaders
energy-impairment-and-disability-inclusion-screen-reader-version

 

On 20th May 2020 Catherine Hale gave an interview to BBC Radio 4 You and Yours about our research and the implications for disabled people with ELCI. The interview begins at 23 mins into the programme.

Click here to listen

 

 

Seminar

Listen to report authors Catherine Hale and Anna Ruddock holding a seminar on Energy impairment and disability inclusion to the School of Health Sciences at City University, London.

Policy paper

The language of impairment and disability

 

We have advocated for change in the way that data on disability and impairment is collected by the government in order to reflect the lived experience of energy impairment and ensure policy makers take account of our distinctive needs. 

Government Statistical Services (GSS) held a consultation in 2019 about the terms used to describe different types of impairment in social surveys about disability. We said the existing category called ‘impairment of stamina/breathing/fatigue’, recommended by the Office for National Statistics, is important to use in all surveys on disability. But we recommended re-naming it ‘energy impairment’. According to our research, this is the term preferred by the chronic illness community to describe our lived experience. 

Click here to read our consultation response to GSS.

 Ableism and disbelief

Our view is that systemic disbelief lies at the root of the social oppression of disabled people with ELCI and energy impairment.

“Many people with ELCI experience hostility and violence when identifying as ‘disabled’. This comes from benefits assessors, strangers on the street if we use Blue Badge parking, sometimes even our nearest and dearest, and most especially the medical profession when they are unable to explain our diseases. We often end up internalising the message that we’re not really disabled.”

Read more about our understandings of ableism, disbelief and chronic illness in this blog post by Leonora Gunn and Catherine Hale.

Debate: Reinvigorating the social model of disability

In July 2020 Chronic Illness Inclusion took part in a discussion about the social model of disability among activists from the UK Disabled People’s Movement. The event was hosted by Disabled People Against Cuts.  Catherine Hale argued for broadening the social model of disability to encompass systemic disbelief as a form of oppression towards disabled people.

Blog: On not being believed

“Not being believed had a profound effect. Despite my background as a Clinical Nurse Specialist I began querying both my diagnosis and clinicians’ decisions. Instead of being secure in my choices I felt unsettled and confused. Maybe I hadn’t followed through on some possible options?…  I can still feel the emotional pain this confusion caused. Why couldn’t this social worker understand? “

Read the full blog post by Fran Springfield

Discussion Paper

Reclaiming Chronic Illness

Why is the term ‘chronic illness’ missing from disability rights activism in the UK? Why are people with chronic illness invisible to policy makers when it comes to issues like social security, employment policy and social care? This discussion paper from 2018 explores chronic illness in the context of the social model of disability, the cornerstone of the UK Disabled People’s Movement. As the key distinction between ‘impairment’ and ‘disability’ in the social model emerged, the notion of ‘chronic illness’ disappeared from view.  For some disabled activists the term still has negative connotations of pity and tragedy. Reclaiming chronic illness defends the term ‘chronic illness’ as the language of self-identity for a significant group of disabled people. The paper sets out the hypothesis for our research:

“I propose that ‘chronic illness’ implies both a specific form of impairment and a virtual social movement of solidarity, peer support and resistance against oppression.”

Click here to read the full Discussion Paper.