What fuels disability denial? Neoliberalism, epistemic injustice and the psychology of legitimacy
"[...] attitudes, beliefs and stereotypes serve to legitimize social arrangements and to provide ideological support for social and political systems" (Jost & Major, 2001, p.4)
"The primary function of ideological thought, in general, is to legitimate ideas that might otherwise be objectionable” (Jost & Major, 2001, p.6)
Jost, J. T., & Major, B. (2001). Emerging perspectives on the psychology of legitimacy. In Jost, J.T. & Major, B. (Eds.) The psychology of legitimacy: Emerging perspectives on ideology, justice, and intergroup relations (pp. 3-30). Cambridge University Press.
In recent months, the chronic illness and disability communities have been hit with a torrent of disability denial, gaslighting and, in some cases, thinly veiled hate. Whilst examples are too numerous to mention, the Science Media Centre’s chief executive Fiona Fox apparently suggesting, in her new book, that people with ME/CFS can be likened to Nazis would probably come top of the list. I say ‘apparently’, since Fox lacked the moral and intellectual courage of her disability denialist convictions and felt the need to allude to this comparison rather than having the balls, metaphorically speaking, to just spit it out. (See here for the perspective of a barrister and person with ME on this sorry state of affairs).
Subsequent to this attack on the moral characters of people with ME/CFS, the spoonie community were hit by a very feeble but highly manipulative attempt by journalist Suzy Weiss to increase her own social platform by denigrating disabled folk. Suzy’s offering is a regurgitation of the tired old narratives that implicitly or explicitly invoke denigrating and empirically unsubstantiated concepts about chronically ill people such as neurasthenia (in this case, implied) and 'secondary gains' (in this case, explicitly discussed). The regurgitation also referred to the internet as a “21st century version of Freud’s Vienna” for spoonies. This moralising cautionary tale (Suzy’s disability denial was poorly masked with a pretence of concern) ends with a spoonie deleting her Instagram account - thus presumably cutting off a source of implied social contagion and collusion - which apparently leads to many of her health problems fading into the background*. In short, a salve for the ableist soul.
For clarity, what looked like a redacted version of Suzy’s piece appeared the following day in the Daily Mail, ostensibly authored by Emma James (I don't think it coincidental that a right-wing paper scooped this up, or that such pieces are appearing at a time when we are facing a tidal wave of disability due to long Covid). Guardian journalist and author Dr Francis Ryan responded to the subsequent confusion in explaining that rubbish newspapers sometimes buy pre-existing article content to (re)publish. In short, a re-regurgitation of disability hate, this time on a larger social platform.
Finally (for the purposes of this account), some people within the ME/CFS community recently flagged up a new book on managing ME/CFS, authored by Beverly Knops and Dr Gerard Coakley, which continues to support the use of CBT (cognitive behavioural therapy) and ‘graded activity’ (the latter term has been used in clinical practice to delineate graded exercise therapy or GET whilst pretending it’s something else). This, despite NICE dropping GET from recommendations and downgrading CBT from ‘treatment’ to possible supportive adjunct only - owing to lack of evidence base, alongside indications of patient harms. Whilst a concerning example of denying the reality of ME/CFS, it is hardly surprising that the authors would take this stance since they are both involved with Vitality 360, a ‘specialist pain and fatigue rehabilitation provider’. Knops is executive manager and senior specialist occupational therapist, whilst Coakley – who is listed as a referrer and whose long Covid writings are hosted on the company’s website – is a rheumatologist with an interest in chronic and post-viral fatigue who runs a ‘fatigue clinic’ for people with ME/CFS based on cognitive-behavioural principles. Vitality 360’s founder director is Jessica Bavinton, a co-researcher on the PACE trial. Enough said.
All of these offerings emanate from a belief that positive mindset, affirmative action and good moral character lead to positive health and life outcomes, with the implicit assumption that anybody who does not achieve such outcomes must be lacking in some way. Sadly, such examples are the tip of an a very large ableist iceberg. In this post, I explore what drives disability and chronic illness denial, where ‘denial’ is applied broadly to encompass gaslighting, stigmatising micro-aggressing and denialist behaviours. Whilst entire books could be written on this subject, here I will offer an account drawing from neoliberalism, psychology of legitimacy and epistemic injustice.
Neoliberalism (also known as neoliberal capitalism) may be understood as a historical regime of capitalism and can be defined both as a bio-political ideology and an economic policy model. As the latter, neoliberalism privileges the interests of private corporations and the market over and above respect for human rights, via deregulation, privatisation, preservation of individual ‘freedoms’ and reduction in state spending. As the former, neoliberalism posits an ideal neoliberal subject as motivated, autonomous and entrepreneurial, holding that hard work and ‘excellence’ pays off and that people get what they deserve (the myth of meritocracy and the just world fallacy combined). The flip side of this is that people who do not live up to the ideal neoliberal subject standard are denigrated and othered – cue gaslighting, victim blaming, micro-aggressing and other forms of disability denial.
Neoliberalism is associated with increasing social inequality and has been argued (with some debate) to be highly detrimental to chronically ill and disabled people, not least since neoliberalism and ableism are inextricably linked, celebrating the same values, with each feeding the other. I have previously theorised the rise of (bio)psychosocial discourse and practice in the realm of ME/CFS and so-called 'medically unexplained symptoms' through a lens of neoliberalism: not only does such discourse appeal to the collective clinical and social imagination, but it also justifies neoliberal policies of cut-backs across health and welfare sectors, which (bio)psychosocial theorising facilitates. As I also pointed out in that article, CBT and GET - notably in the context of ‘medically unexplained symptoms’ - are highly consistent with neoliberal values.
But why does neoliberalism appeal so strongly to the masses? Neoliberalism helps to justify an inequitable society, and assists privileged subjects in justifying their privilege, framing it through a lens of deservingness. The myth of meritocracy works in much the same way – privileged folk can sleep soundly telling themselves that their ‘success’ in life is actually all to do with hard work and excellence. If you were to suggest to one of these people that privilege might also have something to do with it, they would probably become very agitated. Drawing from my experience as a disabled person being subject to this psychology, and as a therapist working with such psychology, I suspect that such agitation is related to the anxiety that arises when a comforting and self-justifying worldview collides with another take on reality – but that would be the subject of another blogpost. (See here for a summary of paper I wrote on defensive psychology pertaining to ME/CFS, and here for a new paper exploring who gains from so-called 'medically unexplained symptoms' – and I am not referring to patient psychology!)
Endorsement of neoliberal values - along with right-wing authoritarianism and social dominance orientation - has been found to positively correlate with system justification pertaining to gender and economic inequality. I’m not aware of research extending this as a hypothesis regarding justification of health disparities and disability but it may well exist, and if it doesn’t, it is certainly indicated. Whilst of course correlation is not synonymous with causation, converging research findings suggest that neoliberal ideology may promote justification of health and healthcare inequity through the victim-blaming narrative that some people (chronically ill and disabled people) just don't try hard enough, aren't 'positive', 'resilient', or 'motivated' enough – in short, don't sufficiently conform to the ideal neoliberal subject. System justification theory in psychology, along with the just world fallacy (the belief in a just world), has been positioned within a broader framework of psychology of legitimacy, that critically-oriented researchers have drawn upon to explain why some people do nothing when faced with injustice, or why injustice is not recognised in the first place.
Psychology of legitimacy and system justification
System justification theory posits that people are motivated to defend the status quo, even when that status quo is socially unjust, in order to satisfy certain psychological needs. These needs can be classified as existential (the need for security and safety), epistemic (the need to reduce uncertainty), and relational (the need to belong, the need to ascribe to a shared reality). These are pretty fundamental human needs and, at least from a psychotherapeutic perspective, a threat to or thwarting of such needs (here, chronic illness and disability represents the threat) may be expected to trigger a highly defensive response. Victim blaming, gaslighting, micro-aggressing, and outright denial are just some of the ways that this response may manifest.
Collective ascribing to a belief in a just world, like collective justification of the system, satisfies existential, epistemic and relational needs: society is framed as a safe and relatively predictable place where those who work hard (‘us’) are rewarded and those who don’t (‘them’) only have themselves to blame. The current social order is thus framed to be exactly how it should be. Whilst all chronic illness threatens this collective endeavour, neglected and politically contested chronic illness (i.e. particularly overt examples of social injustice, healthcare and social inequity) pose a far greater threat to the just world view, and may thus trigger a more vociferous defensive reaction. I have written more about these defences here and here (this is theoretical work that draws from my experience as a multiply marginalised person with a therapy background, which seeks to offer a counter-narrative to biopsychosocial hegemony and does not claim to be 'evidence-based').
The collision point of two conflicting realities
It is interesting to consider that neoliberalism could be argued to satisfy the very needs that are thwarted by contested and contestable chronic illness. That is, endorsement of neoliberal values – at least superficially – meets epistemic, existential and relational needs, by offering both a worldview and collective rules for living that ostensibly provide explanations and justifications for chaos, uncertainty and injustice, whilst allowing those who endorse neoliberalism to affiliate in a shared sense of deservingness.
On the other hand, chronic illness – especially that which is contested and neglected – plunges many sufferers into uncertainty, chaos, increasing isolation and the irrefutable recognition that life is neither just nor controllable. In many ways, chronic, incurable and largely untreatable illness represents a very significant threat to the neoliberal order and to the satisfaction of fundamental psychological needs that neoliberalism could be said to serve; this may go some way to explaining the systematic disbelief, dismissal and stigmatization to which many chronically ill and disabled people are subjected.
Biopolitical, ideological drivers of epistemic injustice
Before wrapping up, I want to briefly consider epistemic injustice and its relationship with disability denial. Epistemic injustice is a conceptual framework developed by feminist philosopher Professor Miranda Fricker. Epistemic injustice has been applied to healthcare contexts, as a framework to theorise and elucidate some of the harms done to chronically ill people in the realm of contested illness, notably ME/CFS (see here and also here) and chronic pain. Such work - which I believe is incredibly important in resisting disability denial - has typically focused on healthcare models and associated philosophy, policy and clincial training issues, alongside healthcare encounters (we might say micro and meso levels of analysis). I also think that we should consider epistemic injustice through a macro (in this case, ideological) lens, in particular through the lens of neoliberalism.
I have elsewhere suggested that neoliberalism may be conceptualised as a hermeneutical framework, driving hermeneutical injustice experienced by chronically ill and disabled people (and indeed by other minority groups) by restricting the discursive, clinical and social space to a particular set of norms and assumptions. This restricted space creates ‘conceptual impoverishment’, that is, a lack of conceptual or hermeneutical resources pertaining to the experiences of people who do not conform to neoliberal exigencies. (In fact, in many cases, there is not a lack of conceptual resources – because minority groups have created their own. Rather, privileged subjects refuse to acknowledge these resources). In turn, conceptual impoverishment – or maybe we should say conceptual ignorance - fuels testimonial injustice in the arena of disability and chronic illness: testimonies that do not tally with stereotypes, implicit values and assumptions within the neoliberal clinical and social imagination are dismissed or distorted.
In short, neoliberalism likely promotes both hermeneutical and testimonial (epistemic) injustice in the realm of chronic illness and disability, and thus promotes societal and clinical disability denial.
Critical theorists have long since contended that mainstream representations of minority groups say more about the mainstream collective psyche than they do about the groups they attempt to represent. As somebody who has learnt to navigate the psychopathologies of the mainstream collective consciousness in order to survive decades of ableism and disablism, I would agree with that contention.
In practical terms, this means that the likes of Suzy Weiss and Fiona Fox would do far better exploring their own psychological hang-ups, and what drives them to misrepresent, micro-aggress and gaslight disabled people, than to persist in their rather feeble attempts to make their own light shine brighter by dimming the light of others, and to shore up their precarious ‘just world’ view by denying the realities of chronically ill and disabled people.
*To clarify my position on the Suzy Weiss article: I'm not downplaying the testimonies of people who improve after psychological issues have been addressed; far from it, I'm happy for them, and I'm acutely aware that such psychological work can take a lot of courage. I also recognize that the mind impacts on the body, and vice versa. My issue is with people who, despite no professional training in a given area, think they are qualified to use their considerable privilege and social platform to spew their hatred or fear of minority groups, in part by citing apparently equally misinformed and equally privileged 'experts'. Suzy's piece, in my humble opinion, has exemplified that dynamic. Further, there were reports from actual and would-be interviewees that Suzy Weiss had variously misrepresented the testimony of some of those interviewed, and misrepresented her own interests, in order to get interviews (see here).