Intersectionality, healthcare and myalgic encephalomyelitis: Reflections from experience, 2026, Hunt et al

[forestglip]

Intersectionality, healthcare and myalgic encephalomyelitis: Reflections from experience

Hunt, Joanne

Abstract
Healthcare practice and policy impacting disabled groups has historically reduced disability to an individual phenomenon and homogenised experiences of disability.

Such practices – which lack cultural and structural sensitivity – risk not only individualising, pathologising and responsibilising social oppressions tied to disability, but also erasing multiply marginalised experiences, knowledges and needs within any given disabled group. Moreover, by overlooking the interlocking macrosystems of oppression that shape identities and produce inequities, the potential for transformative practice and systemic change is reduced.

In contrast, intersectionality demands that disability be understood as emerging from personal-political interplays, and beyond a single-axis issue, constituted through mutually reinforcing systems of representation and power.

Focusing on myalgic encephalomyelitis/chronic fatigue syndrome and drawing on my own experience as a multiply marginalised disabled person in the UK, I make a case for UK healthcare to be informed by intersectionality, not as empty rhetoric but as critical social praxis and much-needed epistemic intervention.

Web | DOI | PDF | Feminism & Psychology | Open Access

 

[Trish]

It's hard work for me to read something like this because of the subject specific jargon. I do realise it's not written for people like me not tuned in to this academic field. I really shouldn't attempt it late at night.

From an online dictionary:

intersectionality​

the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.​

A quote from the article

"There are conceptual frameworks beyond the ME/CFS arena that already integrate, or could integrate, intersectionality as a core principle in healthcare, including structural competency (Metzl & Hansen, 2014) and the power threat meaning framework (Johnstone & Boyle, 2018; see also Olkin, 2017; Timothy & Umana Garcia, 2020). These resist pathologising, responsibilising and sociopolitically void models of care. Drawing on some of these approaches, I have proposed a biopsychosocial-structural model to reimagine ME/CFS and other stigmatised conditions (Hunt, 2022). These frameworks collectively endorse a ‘new’ healthcare paradigm (Prilleltensky, 2009) that refuses to reduce disability or body–mind nonnormativity to a personal or single-axis issue."​

I have been puzzling away at it. I think the idea is that organisations like BACME need to listen to people from all sections of society - ethnicity, class, age, gender, disability - in order to provide appropriate care. I have no idea what that would mean in practice.

I don't understand what the biopsychosocial model has to do with this. Maybe it's a different one from the one that has plagued us with CBT/GET for decades.

In the last paragraph, on marginalised groups, I like this sentence:

"Tokenistic, objectifying, voyeuristic inclusion is at least as disempowering as complete exclusion"​

@Josefina, if you're reading this, can you help us out with a plain English summary? As you can see, I'm struggling.

 

[Jonathan Edwards]

I have to say that I think this sort of use of humanities jargon just confuses everything.
We certainly do not need a biopsychosocial approach of any kind. We want everyone to understand that people with ME/CFS cannot 'make themselves better'.

 

[JellyBabyKid]

I don't understand what the biopsychosocial model has to do with this.

As a psychology graduate myself with an interest in epistemic injustice, this is quite challenging to read, so it's not just not academics, but this also looks like an interesting paper and I look forward to reading it, so thanks for sharing it.

At first glance I think it speaks towards trends towards silo-ing and reductionism in the health service and only seeing people from one dimension; the presenting issue in front of them., but people and their health cannot be seen in isolation.

The BPS model has often been reduced to only consider the psychological, whereas originally it was intended to consider people's entire situation; the biological issue they're dealing with as well as the societal pressures that they are facing, such as income, education, employment, housing etc; all the social factors they may be impacting them and their health. This appears to be advocating for returning to considering people in relation to all the other things that affect them.

For example my experience of having ME is going to be different to someone in a totally different social situation, where they are forced to work, in insecure and poor housing, with no support or access to decent food etc and those dimensions can't be discounted.

It is advocating for seeing someone's situation, and all of the pressures on them, as a whole picture, not making the patient responsible when they are often powerless to deal with a number of the factors that are affecting them.

These are my initial impressions on just reading this thread, I haven't read the paper yet so it may need to come back and correct this when I have.

 

[Trish]

Thanks, @JellyBabyKid, that's helpful.

So the social bit of biopsychosocial says there's no point BACME therapists telling someone to keep activity diaries and pace their activities and take rest breaks if they need to go to work to survive, or telling them to get 8 hours uninterrupted sleep if they are a single parent woken often at night by a sick child, or work from home if they are a nurse or bricklayer, and so on.

Sadly even with the best possible intersectional consultation and consideration, BACME therapy is not going to make anyone better, or even improve our health. The problem is not to do with intersectionality, it's to do with an unhelpful and potentially harmful treatment paradigm. It's a big waste of money for everyone, regardless of which section of society we come from.

The bio part again is not about intersectionality, it's that there is no clear biology or biomedical treatment. And BACME's model is a made up unevidenced lie. That’s wrong for all of us

 

[JellyBabyKid]

there's no point BACME therapists telling someone to keep activity diaries and pace their activities and take rest breaks if they need to go to work to survive, or telling them to get 8 hours uninterrupted sleep if they are a single parent woken often at night by a sick child, or work from home if they are a nurse or bricklayer, and do on.

Yes exactly. Plus neoliberalism suggests that we are all individualistic and entirely responsible for our own health and wellbeing, but there are a lot of things that are completely out of our power to control that people are being expected to "optimise" for and blamed if they don't.

Sadly even with the best possible intersectional consultation and consideration, BACME therapy is not going to make anyone better, or even improve our health.

Yes, and it would be helpful to stop blaming people for things that are outside of their control, and consider the things that are influencing their health and experience.

there is no clear biology or biomedical treatment. And BACME's model is a made up enevidenced lie.

Yes. That is the elephant anyone refuses to acknowledge, or resolve, but this paradigm came out of these kind of narratives, that people are heterogeneous and all have the same agency and experience life the same way, and all have the same privileges. These kind of papers and discussions look to unpick and examine those beliefs.

 

[Utsikt]

It’s ironic that a field that talks about not being understood has such difficulties making itself understood by anyone outside the field.

 

[rvallee]

So the social bit of biopsychosocial says there's no point BACME therapists telling someone to keep activity diaries and pace their activities and take rest breaks if they need to go to work to survive, or telling them to get 8 hours uninterrupted sleep if they are a single parent woken often at night by a sick child, or work from home if they are a nurse or bricklayer, and so on.

Sadly even with the best possible intersectional consultation and consideration, BACME therapy is not going to make anyone better, or even improve our health. The problem is not to do with intersectionality, it's to do with an unhelpful and potentially harmful treatment paradigm. It's a big waste of money for everyone, regardless of which section of society we come from.

The bio part again is not about intersectionality, it's that there is no clear biology or biomedical treatment. And BACME's model is a made up unevidenced lie. That’s wrong for all of us

It seems to me that intersectionality can more or less substitute for holistic in this context, in its actual dictionary sense of considering the full picture and all interconnected dimensions. The dimensions are slightly different but it's a similar concept. Except, of course, biopsychosocial ideology is not holistic in that sense so it can't ever achieve that, in the same way as a flat picture can never hold more information than actually walking through that scene in real life.

I don't think enough is said about how biopsychosocial ideology is so not holistic that it literally is less so than the most traditional "purely biomedical" approach to health care, which was never barred from considering those dimensions, it just doesn't pretend to understand what it doesn't.

The idea that a bunch of biased questionnaires, where most of the meaningful data points come from asking about symptoms, can be framed as 'looking at the full picture' of someone's health is beyond ridiculous. It's just a bad attempt at old research trying to map a few numbers onto some of the dimensions of a human being, and simply finding rationalization for how this makes it a full picture. That used to be super popular around the mid-20th century. Almost of all of it was abandoned, biopsychosocial ideology is about all that's left of this fad.

The biopsychosocial model is more holistic than scientific medicine in the exact same sense as astrology is more holistic than astronomy, it's just based on the alternative medicine sense of holistic, rather than its scientific/philosophical one.

Edit: I guess the main difference is that the dimensions of intersectionality are external while the biopsychosocial ones are internal, within one's control. Huge difference, obviously.

 

[rvallee]

It’s ironic that a field that talks about not being understood has such difficulties making itself understood by anyone outside the field.

Communication so clear it has to be constantly repeated, blasted forcefully into people's brains over and over again.

And make it double ironic in that biopsychosocial ideology is all asserted to be based on superior expertise in human behavior. About as true as Lysenko had a superior understanding of plant biology.