Centre for Welfare Reform Report: Energy Impairment and Disability

https://www.centreforwelfarereform....ail&utm_term=0_7303002384-3f6549f63d-78135457

This has just been published.

From the email:

Our report proposes the concepts of energy impairment and energy limiting chronic illness (ELCI). We believe they are important for our identity, inclusion and rights as disabled people.

Energy Impairment and Disability Inclusion was based on research led by disabled people, for disabled people. We conducted in-depth online focus groups and a survey attracting over 2,000 responses.

We adopted the social model of disability as a framework for questioning our experiences. We explored how we are disabled by society, as well as how we are disabled by our bodies. We asked about our participants' priorities for social change, and, most importantly, how we can come together more effectively to advocate for our community.

"My 'real' disability is one I'm sure would not entitle me to use the word 'disabled'"

Our research revealed a paradox: fatigue - or limited energy - is the most debilitating feature of many health conditions. But it is the feature that least entitles us to identify as a disabled person. We conclude that the very idea of "disability" is socially constructed in a way that excludes us.

"None of the systems I have to interact with seem to be designed with people like me, who have chronic illnesses, in mind."

Energy impairment - the experience of having limited energy - unites people with many different diseases and health conditions. People with energy limiting chronic illness are a hidden demographic of disabled people. We have no identity or voice outside of our social media communities. Our experience of impairment is ignored by disability assessment systems, and often not included in disability equality initiatives. More than four in five participants agreed that better understanding of and accounting for chronic illness would significantly improve their quality of life.

"The biggest difference would just be being believed and feeling more deserving of respect in society"

Like other disabled people, people with chronic illness experience forms of oppression that restrict and exclude us on top of the impact of our health condition itself. In particular, we frequently encounter disability denial and disbelief, whether from acquaintances, colleagues, family members or institutions.
Half of our survey respondents said “I feel like an imposter". 85% reported feeling isolated by society’s failure to understand the impact of their condition, and 66% of respondents felt that they risk hostility if they identify as disabled.

"Using the term ‘disabled’ means I can have my life back"

About a half of survey respondents felt that legal obligations to make adjustments for disabled people do not apply to them. And when they did disclose their impairment, participants often found that systems of disability support are not designed for their needs. We argue that in order for people with chronic illness to be respected, supported and included, the concept of energy impairment must be adopted by government and the disability sector.

 

I agree but I worry the flip side of this is that instead of understanding and practical support this could be interpreted by some as patients saying the need the interventions designed by Chalder and Ross Morris.

Be careful what you wish for and word it very carefully.

 

Interesting. Any such overarching concept will have flaws and critics. But it is a fact that this is a specific kind of disability that is not recognized, an enormous gap with disastrous consequences. The current concept of disability is almost exclusively focused on purely mechanical loss, chronic illness exists in a sort of superposition state where it is both acknowledged and trivialized, separate from the practical implementations of disability.

Especially so, disability requires explicit and irreversible loss of function and does not account for any fluctuation. Limbs simply do not regrow (although apparently some are confused enough to think it's something worth checking every now and then). A disability is either permanent or does not exist, fluctuating illness is basically treated with hostility, a "feature" of malingering and/or any set of beliefs about psychosomatics.

Of course those are all things medicine could have integrated a long time ago had it ever been interested in disability studies. So it's not a simple task of making it recognized, it already kind of is, but of being able to convince the medical community that this is a medical problem, not one for sociologists (and nevermind that disability is explicitly tied to a medical diagnosis). But of course this is an underfunded and discriminated research topic so it would take medicine taking it seriously to build the evidence base for medicine to take it seriously. Hard to crack this wall.

There are also many "respectable" diseases that would benefit from such a shift. The specialists are unlikely to be much in favor of this, they tend to be oblivious to this, but the patient communities very much are. This is an important discussion and looks to be a good starting point.

 

I don't know if I'll ever get to read the full report, but I think this is a good approach and a sensible overarching theme with which to advocate for change.

 

Catherine Hale has been on Radio 4’s You and Yours programme today discussing this research. She herself has suffered from ME for 30 years. The section starts about 23.5 minutes into the programme:

https://www.bbc.co.uk/sounds/play/m000hws5

If I find the energy I will type up some more of it

 

Transcription continued (Catherine Hale’s responses to interview questions):

I’m over halfway through so I’ll keep going with the transcribing until I get to the end...

 

That’s all the interview responses now transcribed.

As someone with severe ME, this latter part of the interview does not reflect my experience at all. I’m very concerned that the interview might leave people with the wrong impression about the abilities and needs of many people with ME...