• Jo Hunt

Intersectionality: Why epistemic injustice and stigma are not ‘equal opportunities’ phenomena

Intersectionality is a concept that arose out of what I would consider critical social sciences (notably, the work of Black feminist scholars). However, it is encouraging to note that intersectional concerns are (very slowly) catching the attention of mainstream. Intersectionality is, in my humble opinion, a really important consideration in developing equitable health and social policy and, more broadly, in fostering a more inclusive society. Since intersectionality may well feature in some of my blogposts, I figured I should write a blogpost on the subject.


Some of the below is drawn from academic work I did a while back, which I have tried to make less formal and more 'blogpost friendly'. Due to health issues, I have not been able to change all the references to hyperlinks, hence the in-text citations and reference list at the end. I hope this doesn’t make the post too difficult to read.


Intersectionality holds that individuals can be located at the intersection of multiple (dis)advantaged social identities - or socially constructed categories depending on the epistemological stance - identities that converge and interact in nuanced ways (Crenshaw, 1989; Gkiouleka et al., 2018). A substantial body of research demonstrates that social disadvantage or minority identity, notably on grounds of gender, race and socio-economic status, is associated with marginalising and stigmatising encounters in all social contexts but notably within healthcare (Hoffman & Tarzian, 2001; Tait & Chibnall, 2014; Diniz et al., 2020). Importantly, stigma and associated phenomena (such as discrimination) are broadly associated with higher illness burden (Pascoe & Smart Richman, 2009; Hatzenbuehler et al., 2013). Social disadvantage, associated with marginalised social identities, is also recognised as impacting detrimentally upon health (Friedman, 2020), whilst intersectional stigma, the experience of stigma arising from the interaction of multiple marginalised identities, may give rise to differentiated health outcomes (Turan et al., 2019). (I'm not aware that the term 'intersectional epistemic injustice' exists, but it probably should do). Clearly then, intersectionality is an important consideration for any research, practice or intervention that aims to address health and broader social inequities.

Intersectionality extends beyond the recognition of intersection of multiple social (dis)advantage or social identities; the term is increasingly used to acknowledge and address social structures and power systems with which marginalised identities interact (Carbado et al., 2013). I think this is very important, since whilst a more essentialist approach might consider social identities (such as race, disability etc) to be an innate part of that person, many critical theorists argue that these identities are shaped by the surrounding socio-structural context. For example, whilst mainstream science typically understands disability as residing in the person, critical approaches (notably within the field of disability studies) question to what extent disability is socially constructed – that is, shaped by mainstream discourse, assumptions, social practices (including medicine and the act of diagnosis), and also created through disabling structures (policies, legislation etc) and negative attitudinal contexts.


If we were to take the example of ME/CFS, whilst we know that this patient population are subject to negative stereotyping, stigma and epistemic injustice within society and notably within the healthcare arena (see: Anderson et al., 2012 Blease et al., 2017), there is very limited research on how intersected social (dis)advantage might impact on this. Yet, as previously noted, there is a wealth of research (outside of ME/CFS) demonstrating that social (dis)advantage has an effect on how people are subject to, and experience, stigma and related phenomena. The limited ME/CFS research that takes an (implicit, not explicit) intersectional approach, or at least draws on demographically diverse samples, suggests that people with ME/CFS who experience other social disadvantage may face increased barriers to healthcare (de Carvalho Leite et al., 2011). To my knowledge, at time of writing, there is no explicitly intersectional research on ME/CFS (or indeed many other ‘contested’, marginalised conditions such as fibromyalgia, EDS etc). In fact, I wanted to do a PhD on this area, and have made numerous efforts to put this plan into action, but as a disabled person who cannot leave the house, I am encountering significant structural and attitudinal barriers. This is an example of structural ableism and disablism which likely impacts all the more since I am a woman from a poor, working-class background – an example of intersectionality. (Like most of us, I also have various forms of social privilege – intersectionality looks at both sides of the multi-faceted coin).


Intersectionality matters for many reasons. Take the issue of efficacy or effectiveness of any given intervention for a particular patient group. Whilst the efficacy or effectiveness of cognitive behavioural therapy (CBT) for ME/CFS is strongly contested, it is interesting to me that some patients report that it has been of great help to them, and others report it actually made them worse. There are so many variables that could impact on this, not least the issue of ME/CFS representing a clinically highly heterogeneous group (consider the issue of whether ME and CFS are the same or different entities, co-morbidities within patients, misdiagnoses, missed diagnoses etc). However, little attention is paid to intersectionality. I wonder whether there may be an ‘intersection of social (dis)advantage effect' – that is, whether intersectionality might impact on outcomes for many and varied health interventions. In therapy, there’s not just the intersectionality of patients to consider, but that of therapists, and how this impacts on the ‘between-ness’ – the therapeutic relationship.


In is noteworthy that many (as far as I can see, most) studies exploring CBT for ME/CFS, and other conditions for that matter, draw on samples which are highly skewed toward less marginalised persons. Let's take the PACE trial (White et al., 2011) as an example. Beyond the laundry list of ethical and methodological issues that have been very well documented elsewhere (see Journal of Health Psychology Special Edition, Marks, 2017), this trial drew on a sample where 93% of participants were white. The trial also excluded people who could not attend hospital appointments alongside people without proficiency in English, and drew from a pre-existing patient list at a ‘specialist’ clinic. This would suggest that more socially disadvantaged people, people without the social and cultural capital necessary to access specialist services in the first place, as well as people who are more severely affected, were excluded.


One of the problems with lack of intersectional focus in research is that any findings cannot be generalised to the greater population from which the sample is allegedly drawn. Whilst, even in an ideal world, PACE might have told us something about the portion of the ME/CFS population that reflects the sample, this sample reflects largely socially privileged people, and says very little to nothing about multiply marginalised people. Resulting policy and practice then does little to nothing to accommodate the particular needs of multiply marginalised persons. Of interest, the recent NICE draft guidelines on ME/CFS (NICE, 2020) - clearly a significant step forward from pre-existing guidelines as regards ‘treatment’ recommendations - recognise inequity of access to health services based on geographical location, but do not recognise healthcare inequity associated with intersectionality. Having worked with people with ME/CFS from a very wide range of social backgrounds, I think this needs to be addressed. Further, many charities and patient organisations do little to address the issue of intersectionality– my experience has been that the typical response lies somewhere between suspicion, confusion and apathy.


One of the barriers to better recognition of intersectionality, particularly within healthcare contexts, is that marginalised persons with a marginalised health condition are a minority within a minority, and most agendas in the social world proceed on the back of majoritarian values, needs and perspectives. (This is where enlightened, multiply privileged allies are worth their weight in gold). Things may change a little now in this respect with the emergence of Long Covid where large numbers of previously health- and healthcare-privileged people (from varied social backgrounds) are to varying degrees losing those privileges; intersectionality may help elucidate differentiated perspectives and experiences of this nascent clinical entity.


Another barrier, notably in respect of patient charities, is that charities largely function on creating a spirit of solidarity and sameness within the patient group they represent, constructing the appearance of a collective social (health-related) identity. There appears to be concerns from within some charities that acknowledging intersectionality might cause factions and ensuing tensions within that collective, and distract from the charities’ objectives. Whilst this is a reasonable concern, assuming homogeneity where there is none also risks tensions, largely by risking colonisation and erasure of the experiences and epistemic contributions of more marginalised patients.


Finally, I suspect that intersectionality is often eschewed because it is inherently political. Recognising that social positionality impacts on health outcomes and broader life chances inevitably leads to an examination of the broader social structures that constitute our social positionality. In the field of chronic illness and disability, particularly those considered ‘contested’, this social context is permeated with highly questionable (I would argue corrupt) allegiances between eminent clinician-scientists, the disability insurance industry and the state, further embedded within a neoliberal imaginary which encourages mainstream complicity with what can fairly be considered human rights violations (see: Shakespeare et al., 2017; Rutherford, 2007; Stewart 2016). The careers of some very socially powerful actors have been built on these associations, whilst mainstream society would have to wake up to some deeply unsettling possibilities if it were to consider its role in bolstering the socially unjust status quo. Put simply, it doesn’t generally serve multiply privileged, socially powerful structures or actors to broach intersectionality.


Science has historically tried to separate itself from politics, even drawing on its allegedly apolitical stance as a marker of its objectivity and superior in-road to knowledge. Likewise, patient charities typically cannot receive funding if they become too political. As somebody who largely subscribes to critical theory, I think this highly problematic; the pretence of being apolitical can be an incredibly powerful, and harmful, political act (though that would be the subject of another blogpost).


If we really are ‘all in this together’, and if we are to really ‘leave no one behind’, we need to recognise and respect difference as well as finding points of commonality that foster solidarity. We need to acknowledge how our social positionality, combined with a social context that enables some people whilst oppressing others, results in hugely varied experiences of what ostensibly appears to be the same phenomenon. Recognising intersectionality and integrating this as a framework into research might be a way of working towards these goals.



References


Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education and Counseling, 86(2), 147–155.


Blease, C., Carel, H., & Geraghty, K. (2017). Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome. Journal of Medical Ethics: Journal of the Institute of Medical Ethics, 43(8), 549–557.


Carbado, D. W., Crenshaw, K. W., Mays, V. M., & Tomlinson, B. (2013). Intersectionality: Mapping the Movements of a Theory. Du Bois Review : Social Science Research on Race, 10(2), 303–312.


Crenshaw, K. (1989). Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1989(1), 139–167.


de Carvalho Leite, J. C., de L Drachler, M., Killett, A., Kale, S., Nacul, L., McArthur, M., Hong, C. S., O’Driscoll, L., Pheby, D., Campion, P., Lacerda, E., & Poland, F. (2011). Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. International Journal for Equity in Health, 10(46). https://doi-org/10.1186/1475-9276-10-46


Diniz, E., Castro, P., Bousfield, A., & Figueira Bernardes, S. (2020). Classism and dehumanization in chronic pain: A qualitative study of nurses’ inferences about women of different socio-economic status. British Journal of Health Psychology, 25(1), 152–170.


Friedman, C. (2020). The social determinants of health index. Rehabilitation Psychology, 65(1), 11–21.


Gkiouleka, A., Huijts, T., Beckfield, J., & Bambra, C. (2018). Understanding the micro and macro politics of health: Inequalities, intersectionality & institutions—A research agenda. Social Science & Medicine, 200, 92–98.


Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103(5), 813–821.


Hoffmann, D. E., & Tarzian, A. J. (2001). The girl who cried pain: A bias against women in the treatment of pain. The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics, 29(1), 13–27.


Marks, D.F. (2017). Editorial: Special issue on the PACE Trial. Journal of Health Psychology, 22(9), 1103–1105.


NICE (2020). Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: Diagnosis and management. Draft for consultation, November 2020. https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline


Pascoe, E. A., & Smart Richman, L. (2009). Perceived discrimination and health: A meta-analytic review. Psychological Bulletin, 135(4), 531–554.


Raine, R., Carter, S., Sensky, T., & Black, N. (2004). General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: Qualitative study. BMJ: British Medical Journal, 328(7452), 1354–1357.


Rutherford, J. (2007). New Labour, the market state, and the end of welfare. Soundings: A Journal of Politics and Culture, 36, 38-52.


Shakespeare, T., Watson, N., & Alghaib, O. A. (2017). Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability. Critical Social Policy, 37(1), 22–41.


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


Tait, R. C., & Chibnall, J. T. (2014). Racial/ethnic disparities in the assessment and treatment of pain: Psychosocial perspectives. American Psychologist, 69(2), 131–141.


Turan, J. M., Elafros, M. A., Logie, C. H., Banik, S., Turan, B., Crockett, K. B., Pescosolido, B., & Murray, S. M. (2019). Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine, 17(1), 7.


White, P.D., Goldsmith, K.A., Johnson, A.L., Potts, L., Walwyn, R., DeCesare, J.C., … Sharpe, M. (2011). Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): A randomised trial. The Lancet, 377(9768), 823–836.

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