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  • Writer's pictureJoanne Hunt

On the government of disability: ME/CFS, long Covid, ‘medically unexplained’ and energy-limiting conditions


This post foregrounds - and combines - the concept of the 'government of disability' as per the work of Dr Shelley Tremain, and work on 'energy-limiting conditions' as developed by disabled people's organisation Chronic Illness Inclusion. Much of what follows is therefore necessarily my interpretation and extension of the foundational work of others, and I encourage readers to engage directly with that work - which is referenced throughout. The ideas I forward here can be found in my published papers.


I have written at quite some length on what I call the ‘psy-corporate-state complex’, and how this complex has shaped the trajectory of so-called medically unexplained or otherwise clinically contested illness, myalgic encephalomyelitis / chronic fatigue syndrome and long Covid. The nexus of alliances arising from this complex has produced discourse, practices and policy that are most evidently informed by a particular variant of (bio)psychosocial model, but are more fundamentally informed by intersecting oppressive power systems entwined with socio-economic and biopolitical agendas (e.g. see here, here, here, here, and here).


To re-iterate: (bio)psychosocial politics coalesces around a network of alliances pertaining to the disability rehabilitation and insurance industries, the state, academia, scientific publishers, the mainstream media (further influenced by the Science Media Centre) and psy, who have succeeded in producing what Foucault would call a ‘regime of truth’ vis-à-vis particular chronic illnesses, underpinned with highly damaging notions of normalcy, recovery and productivity. Whilst this cluster of targeted chronic illnesses grows ever larger, psy-corporate-state actors began by exploiting the ‘subjective’ aspects of diagnoses lacking established biomarkers, rendering ME/CFS something of a blueprint for the development of this regime of truth.


Notable among writings on biopsychosocial politics are those arising from disability activism, where it has long been argued that this (bio)psychosocial regime of truth is founded upon neoliberal-capitalist labour market trends, welfare reform and austerity politics; more specifically, endeavours to detach disabled people from long-term benefits, pushing them back into the labour force whether or not they are able to work in any capacity (e.g. see here, here and here). In some OECD countries, such endeavours are driven by an overarching agenda to replace welfare state provisions with a US-style private system of insurance (see here and here). This project, perhaps most clearly evident in the UK, is partly motivated by cost-cutting: exemptions from social security benefits and income protection insurance, advocating of (cheaper) psychosocial healthcare interventions over appropriate biomedical care as routes to recovery, and ensuing low levels of public investment in biomedical research are indubitably an attractive prospect to many of the actors involved.


Nevertheless, as some scholars and disabled activists have pointed out, there is a macro-economic picture to consider when contemplating (bio)psychosocial politics. This relates to capitalist accumulation and can be theorised via the Marxist concepts of the reserve army of labour and relative surplus populations, whereby the reconstitution of disabled people as undeserving of disability status, alongside increased welfare conditionality and psycho-coercion, prove highly beneficial to the ‘market’. Ellen Clifford, disabled activist, disability consultant and writer, has offered a clear explication of this bigger picture, which has at its core the aim of “disciplining both unemployed labour and the existing workforce” in the service of capital. (I drew from some of Clifford’s work in writing this paper on ME/CFS and long Covid).


Beyond these socio-economic drivers and consequences of psy-corporate-state ‘management’ of disabled people, there are important psychological, socio-cultural and embodied aspects to consider that can be understood through a biopolitical lens. Accordingly, I have elsewhere suggested that disability denial and healthcare neglect as sustained by people with contested and politicised conditions has been motivated by “a combination of professional self-interest, capitalist labour market dynamics and associated neoliberal biopolitics. Such biopolitics can be further explicated through the concept of the 'government of disability', a concept developed by disabled, femme-identifying feminist philosopher of disability, Dr Shelley Tremain.


Government of disability


Tremain’s concept of the government of disability is partly inspired by Michel Foucault’s thinking on biopolitics, biopower, government and governmentality, which Tremain uses to explain how disabled subjects and subjectivities are constituted and how they are controlled. Biopower and biopolitics, simply conceptualised, relate to deployment of power over life, both at the level of individual bodies, and the population. More specifically, Foucault argued that modern forms of social control – tightly aligned in previous eras with sovereign power and brutal punishment - arise from government or the ‘conduct of conduct’: from managing the bodies (or body/minds) of people or groups considered to pose a problem to modern forms of government.

 

Modern government proceeds with a particular ‘rationality’: shaping norms, conduct and the very subjectivities of those governed according to dominant ideals of personhood and behaviour, and with the reasoning that some groups create problems for governmental practice in ways that need to be addressed. Governing subjects and shaping subjectivities encourages subjects to govern themselves, or as Tremain says, to “make them identify themselves in ways that make them governable”.


Foucault used the terms discipline and disciplinary power to explain how individual bodies or body/minds are subjugated to governmentality. Whilst disciplinary power might be understood as a form of biopower operating at a micro-level (on individual bodies), discipline can be understood as the related form of government: governing subjects through rendering bodies amenable to correction and normalisation. As Tremain makes clear: “Disciplinary practices enable subjects to act in order to constrain them”. In other words, by encouraging individuals to conform in particular ways, those individuals can be constrained and controlled even whilst it appears (to themselves and others) that they are acting freely. Such governance requires corrective and regulatory mechanisms, which Foucault variously referred to as ‘technologies of normalisation’, ‘technologies of power’ and 'technologies of government’: a plethora of regulating procedures ranging from biological screenings to psychotherapies, from pharmacological and surgical interventions to psychiatric assessments and detentions – and beyond.


Translating Tremain’s ideas into the arena of medically unexplained symptoms, ME/CFS, long Covid and energy-limiting conditions* may help to understand why disability denial and healthcare neglect have become so entrenched. In these cases, the rationality of government is that some disabled people (those that Dr Karen Soldatic referred to as ‘partially disabled’ and ‘not really disabled’) are unnecessary ‘burdens’ on the state, costing money through medical care, state benefits, disability insurance pay-outs and so forth when in fact they could relinquish public and private  safety nets and return to optimum productivity in the labour force with the right ‘management’. Whilst the partially disabled subject makes more sense in understanding surplus, the extent of disability denial sustained by people with diagnoses positioned as medically unexplained renders them ‘not really disabled’.


*Energy-limiting conditions, or energy-limiting chronic illness are conditions involving energy impairment (often reduced to the motif of 'fatigue' via social and cultural representations), which are subject to (dis)ableism commonly in the form of disbelief. The concept has been developed by Chronic Illness Inclusion, founded by Catherine Hale, and a foundational definition of energy limiting conditions can be found here. See here, here and here for more examples of this important work which, in my opinion, really showcases the value of disabled knowledges.


This rationality of government is further reinforced by (bio)psychosocial discourse: a particular group of disabled people are re-constituted as labouring under dysfunctional illness-related behaviours and cognitions which can be corrected through psychosocial interventions (technologies of power) such as graded exercise and cognitive behavioural therapy. An added bonus for those implicated in the psy-corporate-state complex is what I earlier referred to as professional self-interest: some of the actors (largely, psy practitioner-researchers) who have developed these technologies of power as routes to recovery have also worked for the state and corporate realms (e.g. see here and here).


(Bio)psychosocial governance as a disciplinary apparatus


In the case of disability more widely, Tremain suggests that the governing of disabled people can be understood as arising from a “vast apparatus” or dispositif in Foucauldian terms. Foucault understood dispositif as an ensemble of “discourses, institutions, architectural forms, regulatory decisions, laws, administrative measures, scientific statements […]” Tremain is clear that this is a “disciplinary apparatus”, that “puts in place the limits of possible conduct […]”. The components of an apparatus also point toward the co-constitutive relationship that Foucault theorised between power and knowledge: power determines what can be legitimately known and by whom, whilst knowledge induces ‘effects of power’ through enabling and constraining norms, conduct and subjectivities.


Following this line of thinking, I have suggested that (bio)psychosocial discourse and practice, entangled with the psy-corporate-state complex, have become so expansive, so entrenched within the collective (un)conscious, that they might be construed as an apparatus of neoliberal-ableist governmentality in their own right (see here).


Socio-cultural, psychological and embodied aspects of governance


The government of disability is facilitated through damaging cultural representations of disabled people, entwining with other oppressive systems of power. In fact, Tremain’s work recognises how disability as an apparatus entwines with apparatuses of gender, sexuality, race and so forth. The socio-cultural norms underpinning (bio)psychosocial politics are fully intersectional, but perhaps most evidently gendered and dis/abled. Accordingly, I have noted that the idealised form of personhood implied by (bio)psychosocial discourse, and the cognitive-behavioural technologies of power advocated to normalise subjects, privilege a self-sufficient, ever ‘improving’, rational, stoic, and hyper-productive subject, whilst the Other constituted through this discourse combines tropes of the undeserving welfare scrounger with the neurasthenic or hysterical woman (see here). However, this idealised subject is also racialised, sexualised and classed, whilst disability intersects and is co-constitutive with all systems of power in a way that impacts differentially on disabled people.


In normalising subjects and shaping subjectivities, the disciplinary apparatus governing disability also has psychological and embodied consequences that can be profoundly harmful for disabled and otherwise marginalised groups positioned as Other. These harms have been powerfully captured in the work of Chronic Illness Inclusion and recent collaborations with the academy (e.g., see here, here, here, and here). Among the frameworks that help us understand these harms are those situated within feminist disability studies: epistemic invalidation and social abandonment, as proffered by Susan Wendell, and psycho-emotional disablism, coined by the late Professor Carol Thomas and further developed by Dr Donna Reeve. (I have discussed these concepts and how they may apply to ME/CFS, long Covid and other energy-limiting conditions here). Consistent with feminist thinking more broadly, these concepts can help explicate how mental distress – whilst appearing to be an individual phenomenon - is often socio-politically mediated.


Socially mediated distress can then become embodied. From a feminist disability studies perspective, I have previously suggested that Dr Ana Bê's concept of externally induced impairment effects is invaluable in understanding how phenomena such as structural discrimination and psycho-emotional disablism quite literally get under the skin. This concept arguably bears resonance with biomedical concepts such as biological embedding and allostatic (over)load, which may help to build bridges between disability-affirmative and disability-pathologising disciplines (see here).


The downstream (psychological, embodied) impact of the government of disability might be conceived as ‘internalising governmentality’: individuals internalise oppressive norms and ideals of personhood which shape their subjectivities and conduct. Via normalised subjectivity and conduct, individuals then re-produce these internalised norms and ideals – thus reproducing governmentality, and perpetuating the inequitable status quo. This can be clearly evidenced in the case of healthcare, but is applicable to all social spheres and actors. My writings are therefore informed by an interest in what could be termed the psychology of ableism, in particular abled people’s unresolved conflicts around dis/ability that feeds exclusionary, denialist practices, policies and institutions (e.g. see here).


Finally, it is well worth re-iterating Tremain’s argument that the disciplinary apparatus, in determining how people are understood socially, scientifically, and how they understand themselves, brings the disabled subject and impairment itself into existence. In this sense, impairment can be understood as ‘an historically contingent artefact of bio-power’ - and perhaps the same can be said about disability. Inspired by Tremain’s work, I have argued that the entity known as ‘chronic fatigue syndrome’ (here, distinguishable from and occluding myalgic encephalomyelitis) can be construed as having been constituted through psy-corporate-state agendas for socio-economic and bio-political purposes as already outlined (e.g. here, here and here).


Far from denying the materiality of impairment and the oppression, this approach helps to expose the power relations and politics that create what many people consider to be natural, apolitical and ahistorical phenomena. As Tremain eloquently summarises: “Truth-discourses that purport to describe phenomena contribute to the construction of their objects”.





References


Bê, A. (2016). Disablism in the lives of people living with a chronic illness in England and Portugal. Disability & Society, 31(4), 465-480. https://doi.org/10.1080/09687599.2016.1181048

 

Clifford, E. (2020). The war on disabled people: Capitalism, welfare and the making of a human catastrophe. Ze Books Ltd.


Evans, B., Allam, A. Hale, C. Bê Pereira, A., Rose, M. and Ruddock, A. (2023). Gendered Experiences of Healthcare for People with Energy Limiting Conditions. https://disbeliefdisregard.uk/wp-content/uploads/2023/09/ELC-Report.pdf


Foucault, M. (1980). Power/Knowledge: Selected Interviews and Other Writings 1972–1977. Edited by C. Gordon. Vintage Books


Hale, C. (2018). Reclaiming ‘Chronic Illness’: an introduction to the Chronic Illness Inclusion Project. The Centre for Welfare Reform. https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/04/reclaiming-chronic-illness-discussion-paper.pdf


Hale, C. (2019). Stories of Our Lives - Case studies from the Chronic Illness Inclusion Project's emancipatory research on benefits and work. Sheffield: Centre for Welfare Reform. https://citizen-network.org/library/stories-of-our-lives.html

 

Hale, C. (2021). What are energy impairment and ELCI? Chronic Illness Inclusion.

 

Hale, C., Benstead, S., Lyus, J., Odell, E. & Ruddock, A. (2020). Energy Impairment and Disability Inclusion: Towards an advocacy movement for energy limiting chronic illness. Centre for Welfare Reform. https://www.centreforwelfarereform.org/uploads/attachment/681/energy-impairment-and-disability-inclusion.pdf


Hale C., Brough, J., Allam, A., Lydiard, S., Springfield, F., Fixter, A., Wright, N., Clutton, V. & Bole, K. (2021). Submission to the Department of Health and Social Care’s Inquiry into Women’s Health and Wellbeing in England. Chronic Illness Inclusion. https://chronicillnessinclusion.org.uk/wp-content/uploads/2021/06/CII.DHSC-Womens-Health-England-June-2021.pdf

 

Hunt, J. (2022). Biopsychosocial model or bio-political Ideology? Medically unexplained symptoms, welfare reform and the implications for Long-Covid. Citizen Network Research. https://citizen-network.org/library/biopsychosocial-model.html  


Hunt, J. (2023). Biopolitics, disavowed disability and the psy (corporate-state) complex: Common health problems and cognate labels. Journal of Critical Psychology, Counselling and Psychotherapy, 23(2), 6-16.


Hunt, J. (2023). An exploration of victim blaming in ‘medically unexplained symptoms’: Neoliberalism and the need to justify the self, group, and the system. European Journal of Psychotherapy and Counselling, 25(3), 278-300. https://doi.org/10.1080/13642537.2023.2240809


Hunt, J. (2023). Making space for disability studies within a structurally competent medical curriculum: reflections on long Covid. Medical Humanities, 49(1),105-116. https://doi.org/10.1136/medhum-2022-012415

 

Hunt, J. (2023, August 10). Contesting oppressive regimes of truth: A critical feminist re-examination of (bio)psychosocial hegemony in the field of myalgic encephalomyelitis / chronic fatigue syndrome. SocArXiv https://doi.org/10.31235/osf.io/3g7kp


Hunt, J. (2024). Holistic or harmful? Examining socio-structural factors in the biopsychosocial model of chronic illness, ‘medically unexplained symptoms’ and disability. Disability & Society, 39(4), 1032–1061. https://doi.org/10.1080/09687599.2022.2099250


Hunt, J. (2024). Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: the legacy of common health problems and the future for long Covid. Critical Social Policy, February 14. https://doi.org/10.1177/02610183241229050

 

Hunt, J. (2024). Reflections on gendered disability denial: The case of energy limiting conditions.  Journal of Critical Psychology, Counselling and Psychotherapy, 24(1), 6-15.


Hunt, J. (2024). Will psychology ever ‘join hands’ with disability studies? Opportunities and challenges in working towards structurally competent and disability-affirmative psychotherapy for energy limiting conditions. Medical Humanities, 24 June. https://doi.org/10.1136/medhum-2023-012877

 

Jolly, D. (2012, April 8). A tale of two models: Disabled people vs Unum, Atos, government and disability charities. DPAChttps://dpac.uk.net/2012/04/a-tale-of-two-models-disabled-people-vs-unum-atos-government-and-disability-charities-debbie-jolly/


Reeve, D. (2006). Towards a psychology of disability: The emotional effects of living in a disabling society. In D. Goodley & R. Lawthom (Eds.), Disability and Psychology: Critical Introductions and Reflections (pp.94–107). Palgrave.


Ruddock, A. & Gkiouleka, A. (2020). I feel forgotten. The Chronic Illness Inclusion Project's submission to the Women and Equalities Committee inquiry into the impact of coronavirus on people with protected characteristics. Sheffield: Centre for Welfare Reform. https://citizen-network.org/library/i-feel-forgotten.html

 

Soldatic, K. (2020). Social Suffering in the Neoliberal Age: Surplusisty and the Partially Disabled Subject. In Routledge Handbook of Disability Studies, edited by N. Watson and S. Vehmas, 237–249. Abingdon: Routledge.


Stewart, M. (2016). Cash Not Care: The Planned Demolition of the UK Welfare State. New Generation Publishing.


Stewart, M. (2023). The public health crisis created by UK social policy reforms, Justice, Power and Resistance, 6(2), 217-228. 10.1332/GQDH4178

 

Thomas, C. (1999). Female Forms: Experiencing and Understanding Disability. Open University Press.

 

Thomas, C. (2007). Sociologies of Disability and Illness: Contested Ideas in Disability Studies

 and Medical Sociology. Springer Nature.

 

Tremain, S. (2001). On the Government of Disability. Social Theory and Practice, 27(4), 617–636.


Tremain, S. (Ed.). (2015). Foucault and the government of disability. University of Michigan Press.


Tremain, S. (2015). This is what a historicist and relativist feminist philosophy of disability looks like. Foucault Studies, 19, 7-42.


Wendell, S. (1996). The rejected body: Feminist philosophical reflections on disability. Routledge.






 

 



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1 Comment


TheCrypticCrossworder
Jun 27

Excellent stuff! Thank you for writing this - and for all your papers on the political history of ME

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