• Nemesis

Factor #8: Ableist politics, money and abuse of power

Let’s go back to where we started (factor#1), with the biopsychosocial model. This model rather ironically arose as a means of making healthcare more holistic and patient-centred (associated with the work of George Engel), but has in fact had the opposite effect. The privileging of the psychological or psychosocial pillar, with little empirical underpinning, is more than a clinical phenomenon; ableist political and economic agendas play a central role in the creeping hegemony of this model. These agendas are important for people with Long Covid to understand, because they underpin a related agenda from certain influential quarters to frame Long Covid as a primarily psychosocial condition that is amenable to psychosocial interventions.

Structural ableism exists in healthcare systems as it does everywhere else in mainstream society; one of the most pervasive yet pernicious examples of this is the discourse that permeates healthcare models, policy, practice and provision. Previous blogs in this series looked at the primacy of an acute care model, the associated sick role, and a tendency to consider life-threatening illness as more ‘serious’ than chronic illness without considering quality of life, disability and impact on carers. All of these factors create a healthcare discourse that discriminates against chronically ill and disabled people. Such people are often considered a ‘burden’ on health services, a ‘drain’ on services resources, because they do not recover as traditional healthcare frameworks would dictate, and thus (to put it bluntly) they cost too much money. The biopsychosocial model as it is applied to MUS, chronic illness and disability serves to reinforce this discourse and justify spending cuts, notably (in the UK at least) from state welfare provision.

Mainstream (and highly ableist) assumptions relating to ‘success’ dictate that motivation and effort are key; in healthcare, the biopsychosocial model has been used to extend this rhetoric to recovery from illness, with the implication that people who do not recover are not adequately motivated or are not putting in the required effort. In fact, it’s more than an implication. Some of the key biopsychosocial papers used to justify welfare reforms and the recommendation of psychosocial treatments revolve around a concept of ‘conscious choice’ inherent in chronic illness and disability.

Essentially, biopsychosocial thinking suggests that disability and chronic illness are driven by ‘secondary gains’ of a psychosocial nature, notably receipt of benefits, being able to opt out of work and family commitments alongside garnering sympathy and attention. In the field of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), a convoluted set of theories of aberrant illness beliefs and fear-avoidance has been constructed with the rather predictable conclusion that treatments such as CBT and GET hold the key to recovery . Again, this is pertinent to Long Covid, since there has been an attempt to advocate these treatments for Long Covid patients from certain quarters.

By framing chronically ill and disabled people in this way, alongside some very dubious (methodologically flawed and professionally biased) clinical trials which appeared to demonstrate the effectiveness of certain psychosocial treatments, the UK government have been proffered a purported ‘evidence-base’ to reduce the number of eligible benefits claimants and thus cut welfare spending. This agenda has also been used to limit funding for biomedical research for MUS, instead pumping public money into the furtherance of biopsychosocial hegemony.

Biopsychosocial hegemony has been facilitated enormously through the interests of the health insurance industry which sit very comfortably with those of the government. During the early 1990s, whilst the UK government sought ways to reduce welfare spending by cutting benefits to chronically ill people, health insurance giants were finding that they were losing profits due to increasing pay-outs for difficult to treat yet disabling illnesses such as ME/CFS and fibromyalgia. It was inevitable that an alliance would form, and so it did: for example, a top executive within the health insurance industry was drafted in to provide consultancy to the UK government whilst a psychosocial research centre funded by the same health insurance giant produced papers commissioned and published by the Department of Work and Pensions (DWP). Some of the (biopsychosocial) academics who helped give this alliance an apparent intellectual foundation had pre-existing associations either with the UK government or the health insurance industry. A number of highly influential UK psychiatrists, also advocates of the biopsychosocial model, are known to have engaged in paid consultancy for health insurance companies and have acted as government advisors on disability and chronic illness. Some of these psychiatrists were co-authors of a DWP-funded clinical trial of biopsychosocial interventions.

I hope to write more specifically about this highly questionable alliance in future blogs, and it is something that many chronically ill and disabled people have written about in far more detail (and probably far more eloquently) than I do here. It would seem however that it needs to be written and spoken about again and again, because this alliance has created an incredibly powerful, deceptive and seemingly impermeable discourse which is doing incalculable harm to chronically ill and disabled people. It is also a discourse in which people with Long Covid should be interested, because it underpins the current lack of effective healthcare for Long Covid. Those people with Long Covid who find that they need support in the form of sickness and disability benefits will also discover that this discourse impacts detrimentally on their ability to access welfare support.

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