Understanding disability/impairment, inclusively: the case of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Hunt

Nightsong

Nightsong

Senior Member (Voting Rights)
Abstract:
Whilst myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has recently attracted high-profile media coverage, dominant accounts do not tell the whole story of how this group of disabled people came to occupy – albeit unequally – society’s fringes. This article, platforming some of the sidelined work of disabled activist-scholars, offers an understanding of oppressions confronting people with ME/CFS that is more inclusive of the politics impacting wider marginalised communities, offering possibilities for coalition-building with other social movements. Moreover, overlooked literature reveals intersecting power systems that differentially shape how ME/CFS is experienced, promoting an understanding of disability/impairment more inclusive of diversity. Inspired by the exhortation of Mike Oliver to record our own histories – lest they be written for us – this contribution seeks to challenge hierarchies and exclusions confronting the author as an academically-sidelined person with ME/CFS.

Link | PDF (Disability & Society, April 2025, open access)
 
Joanne Hunt (MSc, MBACP, GMBPsS) is a disabled researcher with a background in psychological therapies. Her research interests are interdisciplinary and centre on the biopolitics of medically and societally ‘contested’ (medically unexplained, stigmatised and ‘rare’) chronic illness and related disability. Most of Jo’s work is sited at the intersection of disability studies, psychology, feminist studies and ethics. Particular topics of interest include the politics of knowledge production, intersectionality, oppression and modes of resistance, and disability-affirmative, structurally competent approaches to psychotherapy and wider healthcare.
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https://www.uu.se/en/contact-and-organisation/staff?query=N23-2233
 
In this article, I offer an understanding of oppressions differentially confronting those of us with ME/CFS that is more inclusive than accounts proffered by dominantly-situated knowledge-producers: inclusive of the epistemic labours of some of those sidelined, and inclusive of a wider biopolitical context that connects us to the disabled people’s and wider social justice movements.
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I understand that the social sciences has it’s own lingo, but I really wish their writing could be more accessible.
 
The following intro to ME/CFS might be useful. Line breaks added.

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Suspected virally-mediated cases of ME/CFS (under a variety of diagnostic labels) can be traced back to at least the 1930s, with the diagnosis of ‘ME’ being classified by the World Health Organisation as a neurological (biomedical) condition in 1969 (see Kennedy Citation2012; Wendell Citation1996).

This diagnostic entity was re-constructed as ‘mass hysteria’ by two male psychiatrists, with the gender-stereotyped rationale that most patients experiencing symptoms in a high-profile outbreak (at London’s Royal Free Hospital) were women.

Further oppression of people with ME/CFS followed in the late 1980s and early 1990s, notably associated with a group of influential, elite UK psy actors who re-constituted ME as ‘CFS’.

This change of nomenclature accompanied the promotion of a particular variant of biopsychosocial framework and a narrative of psychological perpetuation that has become dominant within and beyond the UK.

More precisely, biopsychosocial discourse constitutes ME/CFS as perpetuated by ‘maladaptive’ psychology that is potentially recoverable through psychosocial (cognitive-behaviourally inspired) interventions developed by biopsychosocial proponents (Kennedy Citation2012).

A ‘paradigm conflict’ dynamic has thus arisen in knowledge-producing spaces, whereby biomedical and biopsychosocial frameworks compete (see Hughes, Lubet, and Tuller Citation2023).
 
Utsikt said:
I understand that the social sciences has it’s own lingo, but I really wish their writing could be more accessible.
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Quite funny given they have accessible tools to be able to listen to the article. But then use language to make it quite inaccessible. While talking about how the perspectives of some are excluded.
 
Unfortunately it seems in order to get published in sociology journals you have to use the jargon.

Joanne Hunt has written several other articles which you can find using the tag of her name at the top of this thread.

This also links to a thread about her blog, Healthcare Hubris, which is written in much clearer language and I remember being very good. I have just tried accessing it and it now has a sign in process, and you have to wait to be accepted, which I have done.
 
Thanks @Trish Good to know.

It felt like the intention was good but I got quickly lost. I say this as a child of someone with a PhD in the social sciences! I understand the need for specialist language to be specific or if describing something new, but sometimes (in all fields to be fair) it just seems unnecessary and a barrier for a wider audience.
 
Trish said:
This also links to a thread about her blog, Healthcare Hubris, which is written in much clearer language and I remember being very good. I have just tried accessing it and it now has a sign in process, and you have to wait to be accepted, which I have done.
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I have been trying to access her blog for a couple of weeks and have not had a response to my sign-up, or my tweet or direct messages to both accounts on Twitx and still don't have access, somewhat frustratingly.
 
ME Research UK:

Joanne Hunt – a researcher at Uppsala Universitet in Sweden and “person with severe ME/CFS”, has written an article highlighting that the lack of attention given to inequalities between different groups of people with ME/CFS – “intra-community inequalities”, for example, between people with the disease who are from different ethnic groups, may lead to the realities of those in minority groups being erased or misrepresented.

Read more: https://bit.ly/3EPc6JM
 
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