Paper summary: Long Covid, disability studies, and medical education
The following is a summary of a recent article I had published in Medical Humanities published by BMJ: https://mh.bmj.com/content/early/2022/07/19/medhum-2022-012415
Hunt, J. (2022). Making space for disability studies within a structurally competent medical curriculum: Reflections on long Covid. Medical Humanities (Epub). 19 July. doi:10.1136/
The article argues for the integration of disability studies into medical education curricula, as part of developing a critical, structurally competent curriculum, notably at undergraduate level. Long Covid, specifically sub-groups that may be positioned as ‘medically unexplained’, is discussed as an example of how this integration might work theoretically and in practice.
If you are familiar with thinking from critical theory and disability studies, and you would appreciate a shorter read, the following section on defining terms can be skipped, and you can pick up the thread at ‘Long Covid through a disability studies lens’.
Definition of terms
Structural competency is something I have previously blogged on within the context of medical education. Briefly, this term describes a recognition that health and healthcare are strongly impacted by social and institutional (structural) influences including legislation, organisational and national policies, dominant discourse and ideology. ‘Critical’ in this context refers to theoretical approaches that challenge dominant norms and assumptions, and interrogate social structures that can (re)produce power and oppression.
The article draws on the social-relational model of disability and concept of psycho-emotional disablism within a broader critical disability studies paradigm, in offering a nuanced and structurally competent understanding of disability that encompasses both social and medical models of disability. Very briefly, the social model conceptualises disability as a form of social oppression imposed upon people with an impairment, whereas the medical model views disability as bodily difference (often deviance) and/or impairment itself.
The social-relational model of disability expands the social model to include acknowledgement not only of disabling structural barriers - policy, legislation etc. which can be sources of structural (dis)ableism - but also the disabling potential of interpersonal interactions. These interactions play out within the framework of neoliberal and ableist ideology which positions disability as deficiency, deviancy or tragedy, whilst championing the abled, productive, rational and autonomous subject. Such interactions can undermine the psycho-emotional wellbeing of disabled people, a concept referred to as psycho-emotional disablism.
The discipline of critical disability studies also expands the social model in various ways. This discipline emphasises the need to theorise and integrate the body and impairment, which is highly relevant to the project of integrating disability studies with medicine. Critical disability studies is also preoccupied with intersectionality, concerns arising from representation of difference, the lived experience of disabled people and deconstruction of dominant narratives around disability.
A critically informed (specifically a critical disability studies) approach to long Covid is important in many ways. It highlights how socio-structural phenomena such as pre-existing social disadvantage, stigma and discrimination can combine with biological triggers (here, infection with SARS-CoV-2) to further marginalise and disable. It counters the tendency in medicine to position patient narrative as the lowest form of evidence whilst recognising that the experience of clinicians (doctors-as-patients) with long Covid may be different to that of non medically trained, multiply marginalised patients. It reveals how politically motivated discourse has policed boundaries between ‘deserving and undeserving disability and impairment’, a socially constructed distinction that likely underpins reported difficulties accessing social security benefits and healthcare. Finally, a critical disability studies approach discourages unproductive binaries such as ‘medical versus social model of disability’, which paves the way for a more nuanced understanding of disability. These issues are explored in the article and touched upon in this summary.
Long Covid through a disability studies lens
The article considers the treatment of people with Long Covid in the healthcare arena through a lens of structural (dis)ableism and psycho-emotional disablism. It is contended that clinical disbelief and psychologization (reported in many but not all clinical encounters), combined with structural barriers (lack of appropriate care pathways and health services, lack of adequate healthcare models, and a culture of privileging clinical expertise over patients) may be considered forms of such discrimination.
On closer examination, a recurring motif in qualitative data (see here, here and here) is what might be described as patient experiences, needs and testimonies disappearing into the clinical, social and discursive vacuum between the poles of the ableist binary ‘recover or die’, where this binary can itself be considered an ableist and neoliberal structural barrier to people with chronic illness who inhabit the space in between.
A more profound dynamic of social disenfranchisement (disablement) can be discerned when considering healthcare barriers alongside reported difficulties accessing social security benefits, workplace accommodations, sick certification, disability insurance and more general social support. These barriers are of course inter-related; lack of legitimised diagnosis or disability status often leads to refusal of broader social accommodations.
Whilst the above dynamic can be clearly positioned as structural (dis)ableism, psycho-emotional disablism can also be discerned in the testimonies of people with long Covid. Psycho-emotional disablism can arise from responses to socio-structural barriers, social interactions with others, and internalised oppression (internalisation of neoliberal and ableist discourse). All manifestations are evident from qualitative research and patient report and specific examples are detailed in the paper.
Of particular note, the concept of “landscapes of power and exclusion” (Kitchin, 1998, 346) is evoked, whereby exclusionary policies and practices give disabled people the implicit message that they are different, 'out of place' and unwelcome. Such exclusion carries consequences for psycho-emotional as well as physical wellbeing. Moreover, internalisation of neoliberal and ableist assumptions, not least the ‘recover or die’ binary narrative, may be associated with documented reports among people with long Covid of feeling burdensome and guilty, and anxious over the possibility of being framed as a ‘problem patient’.
Applying a structural competency framework
Implications for medical education and practice are discussed in the paper through application of the structural competency framework (Metzl and Hansen, 2014*). This framework comprises 5 intersecting skillsets, which are discussed in detail in the paper. In what follows, a necessarily selective summary is offered.
*Metzl, J. M., & Hansen, H. (2014). Structural competency: Theorizing a new medical engagement with stigma and inequality. Social Science & Medicine, 103, 126–133. DOI: 10.1016/j.socscimed.2013.06.032
Skillset 1: “Recognizing the structures that shape clinical interactions” (Metzl & Hansen 2014, p.128)
It is important for clinicians to recognise that clinical and societal discourse around poorly treated conditions and marginalised patient groups – including long Covid – are heavily influenced by socio-political agendas. Disability studies scholars and activists have long since argued that the biopsychosocial model as it dominates state healthcare provision and social policy is underpinned by interests revolving around welfare reform policies in the UK and beyond (see here, here and here). These interests as they pertain to ‘medically unexplained symptoms’ or otherwise ‘contested’ conditions such as ME/CFS are outlined in the paper, and I have written on this area in various blogposts (see here and here) and in two published papers (here and here).
Ableist, neoliberal ideology and associated interests, as pervades welfare reform and the political variant of the biopsychosocial model, may be discerned in the move from some quarters to position long Covid (or at least sub-groups thereof) as a psychosocial entity recoverable through interventions such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) (see here and here). That is, the narrative of ‘overcoming’ chronic illness and disability through hard work, positive action and mindset (the biopsychosocial narrative as it applies to ‘medically unexplained symptoms’) is permeated with ableist, neoliberalist assumptions. Such moves may also be considered the unfortunate legacy of historical marginalisation of other ‘contested’ (marginalised, politically hijacked) conditions such as ME/CFS, where the same ideology predominates.
Skillset 2: “Observing and imagining structural interventions” (Metzl & Hansen, 2014, p.130)
Assessing the limitations of dominant interventions through a structural lens opens the door to developing structurally competent interventions. Disabled People’s Organisations and chronic illness advocacy organisations (see here and here for examples) - whose work began pre-pandemic - have paved the way in this regard through emphasising co-production in clinical encounters, policy development and research design, alongside integration of health, social care and welfare support. Long Covid advocates, some of whom are clinicians, have made very similar arguments.
In terms of practice, it is important that clinicians acknowledge that the healthcare and social security system can be source of structural (dis)ableism and psycho-emotional ableism, and commit to practising in such a way that resists complicity with such.
In terms of medical education, partnerships between faculty and advocacy groups, alongside inclusion of disabled co-educators, are of utmost importance. Further, politics (as it pertains to health and healthcare) should be included as a topic in medical curricula, so that clinicians can contextualise what patients bring to the healthcare encounter. For example, there are increasing reports of people with long Covid struggling to obtain social security benefits; political agendas as referenced above go a long way to explaining these difficulties. Here, structural competency would prevent clinicians locating the problem within the patient, thus countering victim blaming.
Skillset 3: “Rearticulating ‘cultural’ presentations in structural terms” (Metzl & Hansen, 2014, p.130)
This skillset may also help to counter victim blaming tendencies in clinical encounters. Disability studies holds that disability is not to be located within the person, but within disabling social structures; medical education and practice can draw from this perspective. For example, the above-mentioned reports of difficulties in obtaining benefits can be ascribed to an unaccommodating, if not downright hostile, social security system, as opposed to the alleged entitlement mindset of people who are not really eligible. In a similar vein, psychological distress, well documented in long Covid and in other conditions that may be positioned as ‘medically unexplained’ or otherwise ‘contested’, might be explained as an understandable response to systematic structural discrimination as opposed to something pathological or ‘maladaptive’ that resides in the individual patient.
Whilst neoliberal and ableist ideology permeating healthcare clearly impacts on patients, it also impacts directly on clinicians through pay-for-performance schemes, time-limited consultations, audit culture and work-load intensification, which have been associated with clinical burnout and low morale. This may impact all the more when working with patient groups that challenge dominant explanatory models, practice and policy, such as long Covid. Understanding these conflicts and challenges may encourage clinician self-care.
Acknowledging that structural influences can constrain both clinicians and patients potentially positions both parties as partners or allies; this may counter tensions and conflict that have been well documented in healthcare encounters with marginalised patient groups (see here and here). Foregrounding collaboration and solidarity within the clinician-patient relationship may be therapeutic in itself, both in the case of long Covid and other marginalised groups.
Skillset 4: “Developing an extra-clinical language of structure” (Metzl & Hansen, 2014, p.129)
Given the above discussions, neoliberalism as both a biopolitical ideology and economic policy might be considered a ‘structure’ that is highly pertinent to healthcare. Like other oppressive structures, neoliberalism is to some degree continually internalised and re-enacted, often unthinkingly, by all social actors, but impacts most detrimentally on marginalised persons. Alongside, or embedded within, the structure of neoliberalism are binary structures (‘normal’ / ‘abnormal’, ability / disability, recovery / death etc.) which marginalise disabled and chronically ill people, structures that are evident in the healthcare arena.
Disabled and chronically ill persons, particularly those who are impacted by other forms of oppression, are experts in the lived experience of the detrimental impact of such structures, pointing to a need for coproduction at every level in the healthcare arena and more broadly. The cv-19 pandemic and the emergence of long Covid has foregrounded the value of coproduction, highlighted the noxious reach of neoliberalism, and disrupted binaries.
Skillset 5: “Developing structural humility” (Metzl & Hansen, 2014, p.131)
The final skillset, developing structural humility, suggests that it is important to be realistic about the project of integrating disability studies, and other structurally competent disciplines, into medicine. Such integration does not require that clinicians are fully conversant with the canon of disability studies and wider critical literature. Rather, structural competency can be considered a process by which faculty, students and qualified clinicians become more open to, and engaged with, epistemological and ontological positions beyond those espoused by the biomedical model.
Structural humility may also be understood as recognising the danger of focusing on structural influences to the detriment of the individual (micro-level) influences. That is, a truly holistic approach should combine biological, psychological, social and structural influences, and avoid an unproductive division between medical and social models of disability. This would mean understanding disability as a complex interplay of structures, bodies and minds.
Lastly, structural humility might also be interpreted as humility vis-à-vis an understanding of how structural factors exert their influence, and a recognition that each patient will be impacted differently. In this regard, an appreciation of intersectionality is important. Of particular relevance to long Covid, clinicians who now live with this condition have reported that they are better able to understand poorly delineated and ‘contested’ illness. Whilst this is indubitably true, caution should be exercised when assuming homogeneity of experience within and across marginalised patient groups, so as to guard against co-opting and erasing* more marginally situated experiences. In fact, given the variations in quality of healthcare encounters reported by people with long Covid, intersectional research is strongly indicated.
In summary, disability studies has much to offer medical education and practice, not least since dominant explanatory frameworks in clinical practice (the medical model and biopsychosocial model) do not demonstrate structural competency. Integrating thinking from disability studies into medical curricula offers a pathway to more equitable and truly patient-centred care, whilst reducing tensions within the clinical encounter. Given the strong possibility of a wave of covid-related disability, it is more important than ever to address the issues raised in the paper. Whilst long Covid has been the focus of discussion, points raised apply to all chronic illness, especially those that are positioned as ‘contested’ or ‘medically unexplained’.
*co-option and erasure of disabled and chronically ill people’s experiences is a concept I have borrowed from the excellent research of Chronic Illness Inclusion.