ELCI, energy impairment & disability

Energy Impairment and Disability Inclusion


Our major report sets out the evidence for considering ELCI as a cohort of disabled people. Our research, supported by the
DRILL programme [link to], 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. 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. 

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, 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. We propose that this disbelief is systemic, operating through many institutions, policies and practices in society. Our evidence suggests systemic disbelief can have a devastating impact on our lives, far beyond the impact of illness and disease itself. It results in barriers to eligibility for essential systems of support like social security and social care, as well as barriers to accessing rights to disability equality and inclusion. Internalised disbelief can profoundly damage our sense of self and prevent us from flourishing as disabled people. 

For this reason we propose that systemic disbelief is a manifestation of ableism. 

Click the image below to download the report.


Version for screenreaders energy-impairment-and-disability-inclusion-screen-reader-version

Easyread version energy-impairment-easy-read

 

 

 

 

 

Response to consultation on impairment by Government Statistical Services


The GSS consultation was aimed at standardising categories of impairment so that research across government and the disability sector can be compared more easily.

In our consultation response we said that it is important to capture ‘energy-impairment’ as a valid and distinct type of limitation or impairment. 87% of our survey respondents with chronic illness said they would always, or sometimes, use this term to describe the impact of their health condition. Although a similar category of “stamina, breathing and fatigue difficulties” is recommended by the Office for National Statistics, we rarely see it used, leading to under-reporting and neglect of our needs. We also stressed the importance of using language that is empowering and reflects our lived experience.

Click the image below to download the report.

 

 

 

 

 

 

 

 

 

 


Discussion Paper: Reclaiming Chronic Illness


This discussion paper presents the ideas and assumptions behind Chronic Illness Inclusion Project (CII).

A key aim of CII is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I suggest that the lived experience of chronic illness involves both a distinctive form of impairment (bodily malfunction) and a shared experience of disability or disablism (social oppression).

Click the image below to download the report.

 

 

 

 

 

 

 

 

 

‘Reclaiming’ Chronic Illness

Our Director Catherine Hale and Anita Ruddock recently took part is an event organised by the School of Health Sciences at City, University of London.

These events and seminars provide a platform for academics, practitioners and service users to discuss developments on best practice and help promote social inclusion for disabled people and others at risk of social exclusion, through research, teaching and consultancy.

You can watch the event on YouTube