Energy impairment and disability inclusion: towards an advocacy movement for energy limiting chronic illness, by Catherine Hale, Stef Benstead, Jenny Lyus, Evan Odell and Anna Ruddock. Centre for Welfare reform: April 2020
DRILL Blog post: Energy impairment and disability inclusion – report by the Chronic Illness Inclusion Project
If you ask someone living with a debilitating chronic illness if they consider themselves to be disabled, you often get a “yes but, no but” kind of reply.
If you dig deeper, you may find their ambivalence is not so much because they see disability in negative terms. It’s often because they don’t feel entitled to the status of a disabled person.
People with invisible chronic illness typically experience hostility when positioning themselves as disabled – claiming disability benefits or using accessible toilets, for example. Whether from friends, acquaintances or impersonal bureaucracies, the response ranges from subtle expressions of disbelief to overt accusation of faking or attention seeking.
As someone living with chronic illness it took me almost two decades to shake off the pervasive sense of “feeling like a fraud” if I identified as disabled. The research conducted among my peers with the Chronic Illness Inclusion Project (CIIP) has opened my eyes to how widespread this phenomenon is.
The CIIP is part of the DRILL programme, hosted by the Centre for Welfare Reform. Our aim was to reach out into the digital world of our own chronic illness communities, and bring those voices and experiences into spaces where they are not normally heard.
Our report Energy impairment and disability inclusion suggests that this hostility towards invisible chronic illness is linked to an apparent gap in the language of disability and impairment for describing our bodily experiences. Organisations of and for disabled people rarely refer to ‘chronic illness’ in the way we do. And government systems of disability assessment don’t have tick boxes for our recording our experience.
The CIIP combined in-depth focus group research with a survey gathering over 2,000 responses. Across a wide range of reported diagnoses and disease groups, respondents reported that pathological fatigue, or energy limitation, was the most restricting feature of their condition, closely followed by pain. Read more
The CIIP conducted extensive research among the online chronic illness community in 2018. We pioneered an internet-based focus group format that allowed people to participant in in-depth discussions over an eight-week period from their home. And we ran a survey attracting over 2,000 responses.
Our findings include:
- The experience of energy impairment unites people with many different diseases and health conditions.
- People with energy limiting chronic illness (ELCI) are a hidden group of disabled people. We lack an identity and a voice as a defined group outside of our social media communities.
- The experience of energy impairment is ignored by most disability assessment systems in the UK. And the adjustments and accommodations need by people with ELCI are not commonly included in disability equality initiatives.
- Like all disabled people, we experience unnecessary exclusion, restriction and disadvantage on top of our symptoms. We call this “ableism”.
- The ableism we experience centres on hostile attitudes, especially attitudes of denial and disbelief towards our disability.
- Disability denial and disbelief prevent many people with ELCI from identifying, and being identified, as disabled people. This forms a major barrier to claiming our rights to equality and inclusion in society.
DNS blog: People with chronic illness face hostility and isolation’, says pioneering report, by John Pring, 30 April 2020
People with chronic illness face hostility and isolation because of society’s failure to understand how their impairment affects their lives, according to the results of a ground-breaking piece of user-led research.
The research concluded that the most “fundamental oppression” experienced by people with conditions such as ME, multiple sclerosis, fibromyalgia and Ehlers-Danlos syndrome was the “negative attitudes” they faced.
More than 80 per cent of the more than 2,000 people with chronic illness who took part in a survey for the research believed there was a denial and disbelief about the fatigue they experienced.
The Energy Impairment and Disability Inclusion report (PDF) found that those who challenged this oppression by identifying as disabled people found the experience “liberating”.
The main sources of oppressive attitudes were interactions with Department for Work and Pensions staff – particularly in relation to personal independence payment – and healthcare professionals.
Understanding that the “disbelief and invalidation” they face is a disabling barrier is crucial to developing a social model of chronic illness, the report suggests.