Centre for Welfare Reform Report: Energy Impairment and Disability

[InitialConditions]

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.

 

[Invisible Woman]

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.

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.

 

[rvallee]

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.

 

[InitialConditions]

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.

 

[JaneL]

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:

One of the striking findings was that both focus group participants and respondents said that fatigue, or what we refer to as energy limitation was the most debilitating aspect of their health condition and yet it was the thing that wasn’t seen or acknowledged by other people. So society doesn’t see us as disabled people and that leads to all sorts of difficulties - to forms of stigma, hostility and neglect. The other thing that participants felt is that the term fatigue itself doesn’t do justice to the experience of chronic illness, it doesn’t capture the experience of what we call energy impairment.

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

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

 

[JaneL]

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

So energy impairment isn’t just about feeling tired maybe because you’ve had a hard week at work and you don’t feel like going out. Energy impairment is about having a really really limited resource of energy and having to ration it out very carefully. So if you imagine, it’s like having a mobile phone battery that won’t charge more than 10 or 20% and one small activity like having a shower and getting dressed could drain your energy for the rest of the day.

The misunderstanding that people encountered and the feeling that they weren’t entitled to call themselves disabled people because they didn’t meet the stereotypes of what a disabled person is supposed to look like.

It’s very clear that in terms of the Equality Act - the Equality Act sets clear criteria for disability - and in fact 99% of our survey respondents met those criteria so clearly were disabled in terms of the law. But actually, a large proportion of them weren’t sure if they were disabled or thought that they weren’t entitled to identify as disabled.

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

 

[JaneL]

The conclusion [of the research] is that people with what we call energy limiting chronic illnesses are a really broad group, it’s not just the conditions that you might think of like ME or fibromyalgia but all sorts of respiratory conditions, autoimmune diseases share this experience, so we need to come together more strongly as a group. And we should be recognised by policy makers and government as an important group. In fact people with impairment of stamina, breathing and fatigue are the second largest group of disabled people in the UK.

The needs of people with energy impairment need to be moved further up on the disability rights agenda so that adjustments like video conferencing and remote access - the things that everyone’s using in the lockdown. Those needs are going to continue for people with chronic illness after the lockdown is over. We need remote working facilities, remote video conferencing facilities to be much more widely used and accepted as a form of including disabled people.

Disabled people have been asking for these adjustments, or dreaming of them, or hoping for them for years now and we’ve been using them amongst ourselves. Like with my team - we’ve been using Zoom for over a year now, our research was conducted entirely online, so that people who are housebound would be able to take part. But in so many areas - whether it’s employment or medical appointments, we’ve been asking for these things and we’ve just been told that they weren’t possible or that they were too much trouble or too expensive and suddenly it seems that within the space of weeks, the whole world has adjusted and these things absolutely are possible.

I was told very early on in having ME, I spoke to a disability employment advisor... I said “I really really want to work but I need to work from home and I can only work limited hours and I need flexibility with my hours and I remember that disability employment advisor telling me he just couldn’t help me, I didn’t have the right kind of disability, you know the adjustments didn’t exist. But now these adjustments and facilities absolutely do exist and now there’s no more excuse for employers to say that it’s not possible to work from home or take part in a team meeting using Zoom for example. It is a good thing that the world has realised that these things are so much easier than everybody said they were and we just hope that there is going to be a positive legacy to this once the lockdown is over.

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...