EPIC Seminar Series

The Project EPIC team are pleased to announce our seminar series which takes place on the last Monday of each month at 14:00 (UK time). The talks are streamed online and are open to anybody who would like to engage with the project.

Our first talk back in March was by Professor Miranda Fricker, whose 2007 book Epistemic Injustice: Ethics and the Power of Knowing catalysed the field we now know as Epistemic Injustice.

 

Miranda Fricker

Fricker spoke to us about epistemic injustice through the lens of the memoir of mental ill-health written by the British actor David Harewood, Maybe I Don’t Belong Here: A Memoir of Race, Identity, Breakdown and Recovery (2021). His personal story explores how experiences of racism, growing up in Britain in the seventies and as a young man in the eighties, sowed the seeds of personal fracture and psychological disconnect that later expressed themselves in psychosis.

Fricker argued that many psychiatrists and therapists see their own work as including the amelioration of precisely these forms of epistemic injustice: aiming to create a therapeutic relationship in which credibility is not withheld, and shared intelligibility of experience is cultivated, with the result that the service-user may come to express themselves without needing to truncate or restyle what they want to say. 

You can watch the recording of Miranda's talk here.

Our April talk was by Professor Lauren Freeman, who spoke to us about microaggressions and epistemic harm in medicine. This talk, which you can watch here, drew on her recently published book which has been co-authored with Heather Stewart. Lauren and Heather recently wrote a project blog for us about the aims of their book which you can read here.

 

Lauren Freeman

In May, we were joined by Dr Maru Mormina. Maru spoke to us about epistemic injustice and epistemic responsibility in evidence-informed policymaking and used expert decision-making through the Covid-19 crisis as a case study to show that scientific expertise was selectively mobilised, leading to systemic ignorance which had significant consequences for the development of policy. 

Watch Maru's talk here. 

Maru Mormina

Our final talk for the semester was given by Dr Naomi Kloosterboer on the topic of how to take people with extreme beliefs seriously. Naomi advocated for a kind of epistemic openness which allows us to acknowledge and confront how our own position distorts our understanding of others in various ways. This epistemic openness, she argued, can be useful when thinking about how clinicians should approach apparent extreme beliefs in mental health service users. 

Watch Naomi's talk here. 

Naomi Kloosterboer

Our seminar series will resume online in September, and the details of all of the upcoming talks will be published on our project website under 'events' > 'seminar series'. We are thrilled to first be welcoming Professor Richard Pettigrew, who is based in Bristol. 

When patients hold back: Tactical choices and epistemic agency

Relationships between healthcare professionals and patients often involve an imbalance of power. Medical professionals are very often the gatekeepers of diagnosis, treatments and other support services. Patients on the other hand, typically lack the institutional markers of authority that come with medical qualifications and position. We’ve seen how epistemic injustices can occur in these settings as a result of the biases and prejudices of medical professionals who fail to appropriately recognise the reliability of their patients as sources of information or structural defects of healthcare systems. 

I’m interested in exploring the ways in which patients might respond. How do those seeking diagnosis or treatment navigate tricky relationships with medical professionals?  What epistemic strategies do patients develop? What forms can epistemic resistance take? One approach that is taken by some patients is a tactical one – being careful about what information they share and how they share it. U.S. based researcher Ann Neville-Jan describes her own relationships with doctors and other medical professionals in her long and often demoralising search for an explanation for her chronic pain and effective pain relief. 

Like many who experience chronic pain, Neville-Jan found herself fighting against the view that her pain was ‘just in her head’ – a perspective not uncommon amongst healthcare professionals who view patients with chronic pain as being unreliable in their understanding of the extent and cause of their own pain. As a researcher herself, Neville-Jan was able to play an active role in investigating her condition, leading to a breakthrough: she came across reports of the effectiveness of the use of the drug Paxil for pain relief. The treatment was effective and also provided an insight into the cause of her pain: a ‘hardwiring’ of pain signals in the brain, similar to phantom limb pain.   

Whilst she was successful in finding effective pain relief, Neville-Jan still had to navigate encounters with healthcare professionals. Given the prevailing “just in your head” attitude, Neville-Jan reasoned that if she shared the information regarding her treatment, healthcare professionals would be likely to appeal to psychosomatic interpretations that better fits their narrative, especially because Paxil could also be used to treat depression. The information that her pain does have a physical cause and is effectively manageable with Paxil may be deemed implausible or even unintelligible to some healthcare professionals. So as a result, she chose to limit what she tells them, holding back the information which she thinks they will be less open to. 

This is an example of a practice which feminist philosopher Kristie Dotson calls ‘testimonial smothering’ in which a speaker ‘truncates’ their testimony – withholds certain information, avoids presenting it in a particular way, or doesn’t share it at all – because they believe that their audience will not find it plausible or intelligible. This practice is often the result of bad experiences: attempts to share information where audiences were found to be incredulous or tended to misinterpret or resist the information being shared. Of course, the practice carries with it numerous negative consequences. It restricts what the speaker is able to share and means that they are unable to challenge the misconceptions of their audience. In Neville-Jan’s case it had specific drawbacks – she had important information regarding the cause and treatment of her pain which can help those involved in her care. She had done a significant amount of research and had knowledge about her condition which she was unable to share. In some sense, this limited her agency. Despite all her work in researching treatments, she was not able to fully engage in discussions about her health.

The problem is that holding back on sharing this information can be a sensible tactical choice for someone in Neville-Jan’s position. By presenting only what is viewed as plausible and intelligible, they ensure that they remain seen as a reliable and intelligible source of information in the eyes of medical professionals.

What does this kind of tactical choice tell us about what it means to have agency in the generation of knowledge? Neville-Jan can be seen as being coerced into holding back information because of the power that healthcare professionals have over her access to treatment. But the intentional negotiation of these relationships through her careful choice of words, suggests a resistant form of agency. She is neither a powerless victim of silencing nor wholly free, but she finds a way of having some control over her situation despite the difficult relationships she must navigate with healthcare professionals. She ‘bargains’ with an unjust system by sacrificing one good (being able to share all information about her treatment) for another (being seen as a reliable source of information). Even though it involves testimonial smothering, a practice of silencing, this is an expression of a resistant form of epistemic agency. 

Alice Moneypenny completed her PhD at Nottingham on safe spaces and epistemic practices, before becoming a Teaching Fellow. Her research focuses on epistemic virtues and vices in a non-ideal world, philosophy of education and epistemic agency. 

EPIC Women in Philosophy Workshop

At Birmingham, we are lucky to receive funds from the school for Women in Philosophy events, workshops, meetings and other activities. Last Thursday, we held a workshop for Early Career Women in Philosophy who work on epistemic injustice.

We were kicked off by Sally Latham who defended the value of non-narrativity about one's illness experiences. Sally argued that people who do not, or cannot, narrate their illness experiences in a particular way are vulnerable to a variety of epistemic injustices. 

We then heard from Eleanor Byrne who spoke about the relationship between epistemic injustices and affective injustices. She discussed the complex intentional structure of our affective lives to shed light on the variety of ways that we can give or deny "uptake" to people's emotions, moods and feelings. 

After lunch, Ellie Palafox-Harris then told us about hypervigilance and the psychiatrist. She presented on the absence of trust in patients in psychiatric encounters, and argued that psychiatrists exhibit epistemic hypervigilance which she takes to be persistent unwarranted distrust.

Kathleen Murphy-Hollies then dissolved the so-called trade-off in our interpersonal interactions with others between the desire to receive accurate information and the desire to be kind. Kathleen argued that the way our description of our experience is received by others shapes that very experience, and that we need to feel that others see us as having agency in order for us to have that agency. 

Jodie Russell then warned us that pluralism about models is not sufficient to bring about a more feminist psychiatry. In the spirit of Sara Ahmed's Queer Phenomenology, Jodie argued that science should also be 'queered', seeking a more radical 'table-flipping' approach to a plurality of perspectives and epistemic practices in science. 

Alice Moneypenny, whose blog will feature next week, spoke to us about testimonial smothering that patients with conditions like chronic pain can be victim to. She argued that being able to navigate and resist being dismissed through tactical adjustment of one's tesitmony illustrates a special form of agency in patients. 

Last but certainly not least, Francesca Bellazzi motivated how we make sense of the so-called human right to science. She argued that truth-seeking is related to epistemic justice, and that active engagement with science allows people to resist a variety of epistemic injustices. 

Good Living: the case of dementia

Dementia is an umbrella term used to indicate a variety of conditions characterised by neuronal damage. The most prevalent type of dementia is Alzheimer's disease which accounts for around 62% of all types of dementia followed by vascular dementia, frontotemporal dementia, and Lewy body dementia as the most frequent. Dementia is characterised by a progressive decline in several domains of cognitive abilities such as executive functions, learning and memory, language, perceptual and motor functions, complex attention and social cognition (DSM-5). The duration is up to 12-15 years. 

Cognitive decline has an impact on the person’s capacity to retain information and also to recall memories, communicate and understand others and the world around them, and to perform daily activities. The person becomes more and more dependent in managing daily life, thus relying on others to perform simple activities in the advanced stages of dementia. So-called “psychological and behavioural symptoms” such as delusions, hallucinations, anxiety, depression, and agitation represent a challenge for carers, impact the quality of life of people with dementia and their caregivers and constitute the major cause of institutionalisation.

Stigma in dementia

Several needs of people with dementia are unmet. Not only practical needs but also emotional and relational needs. Kitwood (1997) and Sabat and Lee (2011) were among the first researchers who focus on the notions of personhood and selfhood in the context of dementia.

Kitwood addressed the issue of malignant social psychology to describe how people with dementia are approached and treated by others. In his book, he used several terms to describe the approach of carers such as infantilization, intimidation, labelling by the name of the disease, invalidation, banishment, ignoring, mockery, and withholding.

The impact of stigma toward dementia can be considered at different levels: individual and societal, at the level of the family and at the level of healthcare and welfare, in research and policies. At an individual level, stigma can lead to feelings of shame, low self-esteem, a sense of uselessness, withdrawal from social interaction, social isolation, depression and anxiety. People with dementia, challenged by the consequences of cognitive decline, experience several limitations which impact their emotional balance.

At the healthcare and welfare level, the stigmatisation of people with dementia can be observed at different steps across the care pathway. Since these aspects are related to the context, the multifaceted impact will be discussed in detail:

• Diagnosis disclosure - Even if it is a right for people to receive information about their health condition and it is their own decision to share their health information with others, in the case of dementia this right is not fully respected.

• Advance care planning - Professional carers avoid talking about the prognosis of the disease and professionals' prejudice about the capacity of people with dementia to understand and discuss care options makes planning difficult. 

• Shared decision making - Lack of involvement of people with dementia in decisions is due to the attitude of others, especially the failure to recognise the person's ability to communicate or express preferences and wishes. 

• Behavioral and Psychological Symptoms of Dementia - Perceptions and thoughts (delusions, hallucinations and misperception), mood (anxiety, depression, apathy and emotional lability), behaviour (agitation, wandering, verbal and non-verbal behaviour which can be aggressive or not), sleep and eating changes are considered meaningless symptoms that are challenging and require controlling or restraining the person with dementia. However, they are also an expression of unmet needs, distress, and absence of engagement.

Older people socialising and being active

Good living with dementia

In recent years, there has been a global effort to reframe the vision of care for dementia from a “giving up” approach where, in the absence of treatment people are invited to “give up work, study, and to go home and live the time left” (Swaffer, 2015), to a more balanced approach where the focus is on good care and on promoting quality of life. To achieve this objective, many researchers focus on interventions aimed at enhancing psychological and social well-being. 

Specifically psycho-social interventions are aimed to support people with dementia to adapt and manage their conditions while preserving a sense of self, identity and social participation. Quinn et al. (2022) report key areas of living well identified by people with dementia: being engaged, having an active lifestyle, preserving positive relationships with others, having a good living situation and environment, having security, getting on with life, being able to get out and about, a positive outlook on life, being able to cope, having independence, and having a purpose in life.

Healthcare and welfare systems need to build skills and approaches which are not only focused on meeting basic needs, but also on promoting a more person-centred approach to meet other individual needs such as inclusion, utility, belonging, participation as well as on preserving dignity.

Rabih Chattat is Professor in the Department of Psychology at the University of Bologna. He works on psychosocial interventions in dementia and the clinical psychology of ageing. 

Rabih is also a partner in project EPIC, investigating the epistemic injustice in people with dementia.

Epistemic injustice across disciplinary lines

This week, post-doc Fred Cooper reports from a GW4 residential on health inequalities and social justice.

For the last eight years, the GW4 Alliance – a consortium of universities in the south west of England and South Wales, consisting of Bath, Bristol, Cardiff, and Exeter – has run GW4 Crucible, a leadership development programme, which brings together future research leaders from across disciplines and institutions to explore how they can enhance their career through interdisciplinary collaboration. The programme has been running since 2017; with over 200 alumni, it runs over the course of four months, providing two in-person residential ‘labs’ and a series of online masterclasses.

Each cohort addresses a particular problem, an urgent challenge too complicated and embedded to be tackled by any singular form of expertise. For 2024, the focus of GW4 Crucible is ‘health inequalities and social justice’, and the methodologies of ‘radical interdisciplinarity’ necessary to approach them. My application to the programme emphasised my (at that point, barely started) research on epistemic injustice, and my interest in having conversations with people that historians don’t always get to meet; such as architects, engineers, scientists, and mathematicians. 

As a historian of medicine, and having worked for six years in an interdisciplinary health research centre, I began my post at EPIC with a sense that considerable numbers of researchers across disciplines are actively engaged with many of the themes and questions that animate the project, but without necessarily deploying the same kinds of language. 

Reading the profiles of my fellow ‘Cruciblees’, in anticipation of meeting them for a two-day residential in a hotel in the misty, rainy hills above Cardiff, nobody presented themselves as a philosopher; I was a rare representative, with a literary scholar, of the humanities in general. At a stage in my own work of trying to gauge the reach and purchase of literatures on epistemic injustice in the kinds of spaces that might usefully benefit from them, the structured and unstructured exchanges that Crucible offered felt like an opportunity to take a (wholly unrepresentative and unscientific) temperature. 

Over the course of the two days, discussions crystallised around six themes, developed in small groups with fluid memberships. While I couldn’t be part of every conversation, I stayed with the two subjects which seemed to show most promise for thinking on epistemic injustice across disciplines, occupied as they were with researcher positionality and lived experience, and the ethics and practice of meaningful inclusion in ‘PPI’ (patient and public involvement), here a cipher for participatory research more broadly. 

Although each of these concerns have their own distinct histories, they begin from a shared proposition immediately familiar to work on epistemic injustice in healthcare contexts; that the experience of being ill, and of becoming a patient, imparts knowledge which is 

• highly pertinent to collective and professional understandings of health, illness, disease, and medical systems; 
• impossible to otherwise come by; and 
• not easily formed, articulated, communicated, or formalised. 

Acknowledging the need for researchers to address, incorporate, and interpret lived experience, and to move towards programmes of work which are (genuinely) co-created or user-led, carries another tacit, latent acknowledgement; that the contexts and processes of health care and research as currently constituted reproduce a raft of epistemic harms, exclusions, injustices, and lacunae. Although different researchers work in different registers and are comfortable with (and able to advance) varying degrees of critique, even the most constructive, positive, ‘inclusive’ argument for greater attentiveness to experience implicitly and necessarily identifies a problem, which can only be fully understood in terms of respective epistemic power. 

Overwhelmingly, the interdisciplinary exchanges taking place in the Crucible spoke to the extensive common ground between researchers interested in problems of speaking and silence, shamed and ‘hidden’ illnesses and experiences, and how lived knowledge can be encouraged, supported, valued, and operationalised. 

The literature on epistemic injustice is, undeniably, extensive, prompting some researchers – including in past entries of this blog – to question its over-zealous application and its dilution or bland reproduction as an idea. These concerns come from very different perspectives and summations of worth, but they both chart pathologies of saturation and abundance. While this may be the case from a particular disciplinary view, discussing epistemic injustice with a broad spectrum of health researchers conferred the opposite impression: that of a highly pertinent and useful set of ideas not (yet) widely taken up, even in research that worked in almost identical spaces, on almost identical problems. 

This is not, of course, an argument that anyone’s work was (or is) ‘in need’ of a closer engagement with epistemic injustice; every Cruciblee had their own robust intellectual and practical tools, making for a compelling – and sometimes challenging – set of conversations. In broader literatures on health and healthcare, however, you can frequently find accounts of many of the phenomena discussed and taxonomized in work on epistemic injustice, but without any particular theoretical framework to interpret and organise them. 

Nobody is obliged to apply the insights of any particular literature to their work, unless, perhaps, the omission is especially glaring (or revealing of patterns of power and exploitation in the academy); but too often, in complicated work addressing multiple themes, meanings only half solidified can sometimes slip away. 

As the study of epistemic injustice moves across and beyond disciplinary lines, one of the biggest challenges will necessarily be around keeping these exchanges rich, complex, and mutually responsive. At the basic level of definition, epistemic injustice is a useful idea; where it can be genuinely transformative, though, is in the pluralism and depth of its conceptualisations, allowing us to think critically and rigorously about a number of significant barriers to health, justice, and care. 

Every discipline has something particular to offer here. For example, my work on the history of loneliness – and Michael Bresalier’s work on the history of tuberculosis vaccination – attends to how systems of knowledge and practice are built over time, in ways that fold in and perpetuate unjust epistemic phenomena. At the GW4 Crucible, I met researchers who, if they had the inclination, could use their expertise and training to take research on epistemic injustice in innovative and exciting directions. Even for a literature already experiencing some of the problems of success, that is an encouraging thought. 

Fred Cooper is a post-doctoral researcher and medical historian on project EPIC based at the University of Bristol.

Genocide Denialism and the Epistemology of Ignorance

Last week, Melanie Altanian started a post in parts last week, on her new book, The Epistemic Injustice of Genocide Denialism (Routledge 2024), which is open access. Here she focuses on genocide denialism, prolonged trauma, and retraumatization.

Cover of the book by Melanie Altanian

Denialism, prolonged trauma, and re-traumatization

When confronted with the topic of Turkish genocide denial, the respondents of Kalayjian et al.’s (1996) study expressed a range of negative emotions, including resentment, hatred, and anger/rage, which are appropriate responses to “a perception that the moral order has been violated, with no recompense having followed this disruption” (Miller and Miller 1987, 198). Denial also presents an insult to painful memories, thus constituting a further humiliation that is likely to re-traumatize survivors and force them to silence themselves regarding their experiences.

Survivors may also wilfully suppress their memories, as it would bring back all the pain and terror of their experiences. This may go along with constrictive behaviour in an attempt to create some sense of safety and to control their pervasive fear. However, by avoiding situations that remind them of the past trauma, or initiatives that involve future planning and risks, they “deprive themselves of those new opportunities for successful coping that might mitigate the effect of the traumatic experience” (Herman 2015 [1992], 59). This includes isolating themselves or remaining silent about their traumatic experience.

Importantly, survivors’ feelings of fear, distrust, and isolation are compounded when they are in an environment of incomprehension or hostility towards them and their testimonies. This creates a vicious cycle, as the shattered self “can be rebuilt only as it was built initially, in connection with others” (Herman 2015 [1992], 74). Rendering traumatic experiences intelligible to oneself and relevant others are essential steps towards resolution and closure.

These considerations have cross-generational significance. As a descendant of Armenian genocide survivors who escaped to France, Janine Altounian (1999, 339) describes from a psychoanalytic perspective the “two-fold collective trauma” that is transmitted to descendants and which they must deal with:

[F]irst, the extermination of the descendants’ families and the annihilation of their ancestors’ native land and cultural referents; and second, the dispersion of their parents, escapees stripped of their territorial and linguistic roots and of any narcissistic foundation for their psychic survival, throughout the Western world, in countries where the denials and silences of Realpolitik hold sway.

Altounian draws on her own experience receiving and processing this transmission. The task, she says, requires being “equipped with the psychic and linguistic apparatus necessary” (Altounian 2017, 70). Borrowing from the language of the host culture, the testimony of the descendant thus may benefit from an institutional context that lends authority to that language; “the privilege of his current status […] allows him to live in a time and under political conditions that tolerate his testimony” (73). This marks the role of the descendant as a witness-translator.

We can, then, see how an institutional context of genocide denialism inhibits practices required for successful trauma recovery, thus prolonging trauma across generations, encouraging ongoing constrictive behaviour, and entrenching a range of negative affects. 

As I argue in the book, genocide denialism presents an epistemology of ignorance that weaponizes genocide survivors and their descendants’ dependency on available shared concepts, meanings, and other epistemic resources they can authoritatively draw on to render their testimonies tolerated, credible, intelligible, and thereby effective. The aim is to terrorize them further and to sustain domination.

Melanie Altanian is assistant professor for epistemology and theory of science at the University of Freiburg. Her research focuses on issues in social and political epistemology, moral philosophy, and social philosophy.

Epistemic Injustice and Genocide

For the next two weeks, Melanie Altanian presents her new book, The Epistemic Injustice of Genocide Denialism (Routledge 2024), which is open access. In today’s and next week’s post, Altanian discusses particularly the psychological harms resulting from conditions of epistemic oppression created and sustained by genocide denialism.

Cover of the book by Melanie Altanian

In my recently published book, I argue for two intertwined theses: 

1. genocide denialism should be understood and explained as a substantive epistemic practice, one that creates and sustains ignorance and ignorant agency; 
2. this kind of ignorance is pernicious, because it perpetuates and sustains epistemic oppression. 

I elaborate on this in relation to two interrelated forms of epistemic oppression: 

• testimonial oppression, which concerns institutionalized disabling constraints on epistemic agency qua genocide testimony, and 
• hermeneutical oppression, which concerns institutionalized disabling constraints on epistemic agency qua genocide remembrance.

Silences in the aftermath of genocide

In the book, I stress the need for distinguishing two types of silence that may occur in the immediate and long-term aftermath of genocide – deliberate or resistant silence, and (coerced) silencing – and that it is by focusing on the latter that we get a clearer picture of the epistemic injustices that genocide survivors may encounter.

As opposed to deliberate or resistant silence, where survivors temporarily and strategically remain silent about their painful memories because it helps them rebuild their lives, (coerced) silencing usually occurs under conditions of genocide denialism, where the social uptake conditions for genocide testimony are rendered systematically dysfunctional.

Such epistemic oppression is intrinsically wrong and comes with a range of follow-on harms. In this post (published in two parts), I would like to draw attention to the psychological harms resulting from conditions of epistemic oppression created and sustained by genocide denialism.

Genocide, trauma, and recovery

Particularly as a long-term strategy to consolidate relations of domination, genocide denialism impacts the psychological well-being of both genocide survivors and their descendants. Besides being re-traumatizing, it obstructs the possibility of processing, thus prolonging, cross-generational personal and collective trauma. These trauma-effects have been studied to a great extent in relation to both the Holocaust and the Armenian genocide (Alayarian 2008, Azarian-Ceccato 2010, Karenian et al. 2010, Kupelian et al. 1998, Lehrner and Yehuda 2018).

For example, a study by Kalayjian et al. (1996) identified feelings of humiliation associated with loss of status, autonomy, property, and dignity among the stressors experienced and reported by survivors of the Armenian genocide, while they experienced recalling the deaths of their family members as most painful. Their responses “reflected feelings of helplessness, loss of control, resignation, uncontrollable re-experiencing of the traumatic events, and sadness”, while “the value and emphasis the Armenian culture places on togetherness served respondents as a coping style – sharing the pain and suffering by ‘sticking together’” (92). 

This already indicates the importance of a supportive environment to turn to for coping with trauma, and the above findings are congruent with trauma research more generally. In Trauma and Recovery, Herman (2015 [1992]) argues that traumatic events are characterized by an experience of helplessness in the face of overwhelming force. Such events “overwhelm the ordinary systems of care that give people a sense of control, connection, and meaning” (44). To recover from trauma thus requires the restoration of a sense of agency and control.

While trauma recovery always depends on social support, in cases of collective violence such as genocide, it must include a political response in the form of public recognition and repair. Rebuilding the survivor’s sense of order and justice requires community action, including assignment of responsibility for and reparation of the harms. We can thus begin to assess the perniciousness of genocide denialism, as it upholds the breach between traumatized persons and the community.

Melanie Altanian is assistant professor for epistemology and theory of science at the University of Freiburg. Her research focuses on issues in social and political epistemology, moral philosophy, and social philosophy.

"The Unequal Pandemic" Film Premiere with #ProjectEPIC

On Thursday 30th May, the short film "The Unequal Pandemic" (produced by Lorne Guy and Phil Webb) premiered in Bristol. The event was co-convened by University of Bristol's Centre for Black Humanities and the Epistemic Injustice in Healthcare (EPIC) Project with support from Good Guys Productions. Below you can read a discussion about the film and the premiere with one of the film's producers, Lorne Guy.

What is the film about?

The Unequal Pandemic delves below the sensational headlines around the Covid-19 pandemic to reveal the tragic family stories of how we were not all in it together.

The film charts how the pandemic swept across the UK and why exactly it was far more deadly for people in lower socio-economic areas, for ethnic minorities and for the disabled. It examines how the North-South divide was clearly highlighted and how front-line NHS doctors, deeply affected by what they witnessed, experienced ‘war like’ trauma which is still not spoken about.

Startling evidence from Prof Sir Michael Marmot and other world leading public health figures gives a clear picture of how wider societal and historical political choices led to the outcome of the UK having one of the worst pandemic death rates among European countries.

Our goal was to get the film's message directly out to those around the country who feel their voice is not being heard. We also wanted to initiate a live dialogue about deep-seated inequalities in the UK today which preceded the pandemic. For instance, from 2011-2018, the UK's life expectancy improvement was the lowest among all other rich or OECD countries apart from Iceland and the USA. Life expectancy was beginning to fall in deprived areas, which hadn’t happened since the second world war.

If you were from an ethnic minority like Black African, Black Caribbean, Indian, Bangladeshi, Pakistani you were far more likely (2, 3 sometimes 4 times) to die than your white counterpart. This is not the reason, it’s a whole raft of reasons that we explore in the film. For instance, in the film, Francesca's mum was poor and disabled and it seems clear that she died as a result of years of inequality. Similarly, Lobby Akkinola lost his Dad Femi, who was a key worker. He died at home before any help could get to him.

How did the film come about?

We were approached by MP Debbie Abrahams, who has a background in public health. She wanted to collaborate on a film around inequality and the pandemic. There was a concern that the Covid-19 Public Inquiry would not sufficiently account for how inequalities before the pandemic impacted people. For instance, how people on low incomes, ethnic minority communities, people with disabilities, and people in the North of England were disproportionately affected.

How was the premiere?

We saw a diverse audience made up of local Bristol groups organisations, activists, academics, journalists as well as affected individuals from as far away as Abergavenny, Wales. The film was introduced by the filmmakers and Dr Josie Gill (University of Bristol).

Following the screening of the 25-minute long film, a panel and audience Q&A took place. The panel was chaired by Dr Connor Ryan (University of Bristol), and the panel participants were Prof Havi Carel (ProjectEPIC Principal Investigator), Huda Hajinur (Caafi Health), and Dr Habib Naqvi MBE (Director, NHS Race and Health Observatory).

An engaging one-hour discussion and audience Q&A followed the screening. Some salient themes in the discussion were how, despite the fact that successful local action was often taken, it was often ignored or interrupted by government and how historical system failures led to community mistrust and exacerbated inequality. Dr Habib Naqvi highlighted and expanded on a quote within the film around the ‘causes of the causes’ of race inequality and disproportionate death toll for certain communities as a result.

The film has also been screened in Parliament. How was that?

The first screening of the film was at Parliament at the end of 2023 followed by an amazing panel discussion including Prof Sir Micheal Marmot, Prof Clare Bambra and Lobby Akinnola.

The reaction was incredible. It was an emotional event but also uplifting.

As a result, there was a demand to show the film wider so we then set out on a UK free screening tour in Preston, York, Newcastle, Liverpool and Manchester. These last two were supported and introduced by Mayor Steve Rotherham and Mayor Andy Burnham. We have just screened in Bristol, and will end with a London screening on June 25th, organised by UCL and the Covid 19 Bereaved Families for Justice.

Some reactions to the first parliament screening:

“A powerful film highlighting the deeply entrenched inequalities in society and how much needs to change to improve the health and resilience of our nation.” Kim Leadbeater, MP

“A heart-rending and sobering gem of a film… The powerful commentary by families and public health experts will live long in the memory.” Ian Byrne, MP

“It was an honour to be at this screening last night and hear from Lobby Akinnola and others share their experiences. Hopefully this gets picked up.” Prof Aaron Reeves

“The film left me as it did others very emotional” Alex Cunningham, MP

McPin Young People's Network

In this post, Lisa Bortolotti interviews Rachel Kimberley Temple, Public Involvement in Research Manager (Youth Involvement Lead) at the McPin foundation.

Logo of McPin's Young People's Network

LB: Hello Rachel! What is the McPin Young People's Network and what is your role in it?

RKT: Hi Lisa! The young people’s network consists of over 400 young people from across the UK, aged 13-28, who identify as having lived experience of a range of mental health issues. Everyone in the network has signed up because they wish to get actively involved in mental health research. Researchers can contact us and share their youth involvement opportunities with the network. The network is essentially intended as a resource for both young people and researchers who are seeking to work together. 

My role is to manage a small team who oversee the network; raising awareness about it, building membership, and sharing key findings from projects connected to the network. We also collaborate directly with researchers who wish to engage with the network, advising and facilitating youth involvement in their projects.

LB: Why do you think is important that young people are actively involved in mental health research?

RKT: I think it’s vital that young people have a role in research that will directly impact them. By applying their expert knowledge, the research becomes more relevant, accessible and appropriate. This not only improves the quality of the research but also makes it more likely to achieve the desired impact. Research therefore benefits hugely for involving young people.

LB: How do young people benefit from involvement in mental health research?

RKT: Young people we have worked have told us that they value learning new skills and find it empowering to apply their expertise to something that will positively benefit others. I think this is so important, because having mental health issues can make you feel powerless. Therefore, being actively involved in research can offer a sense of control - a feeling like you can make a difference. 

We’ve also been able to see young people grow in the role; becoming more confident, making valuable connections with external partners and building their own careers.

LB: Can you give us an example of a research project you have been involved with, and of what the young people helped achieve?

RKT: One example that comes to mind is the agency project. On this project, we worked with young people and academics to co-analyse video data of young people’s mental health interactions within emergency departments. We drew on our unique perspectives and expertise, and combined this to make some important discoveries: how to maximise young people’s agency in interactions about their mental health. We translated those findings into various resources targeted at professionals, young people and other researchers.

To learn more about the Young People's Network visit their website or follow them on X and Instagram. 

If you are a researcher seeking to involve young people in your project or collaborate with McPin, visit this page. 

McPin Young People's Network has contributed to several outputs for the Agency Project including a podcast called "How to give young people agency in mental health" and a poster entitled "What I wish my younger self knew about mental health" aimed at secondary school students. Check them out!

Logo of the Agency Project

Stigma and dignity in end of life care

The concepts of stigma and dignity are clearly interrelated (Grassi and Chochinov 2024). Self-dignity is the worth, stature, or value that human beings have simply because they are human; and social dignity is the worth, stature, or value that human beings confer upon others by acts of affirmation. What is done to reduce stigma in mental health settings results in an increase of dignity and what facilitates stigma results in a non-dignity experience for patients. 

Dignity is both an intrinsic, self-related process and a reciprocal, extrinsic/interpersonal experience. For instance, an individual’s sense of dignity can be thwarted by positive and negative symptoms of serious mental illness, specifically when these symptoms are misunderstood by others. Dignity can be enhanced if the patient and significant others embrace a recovery-focused relationship where they perceive themselves to be treated as individuals, thus reducing the shame that may be associated with being mentally ill (Skorpen et al. 2015). 

The palliative care context

The existence of disparities in health and healthcare between patients with serious mental illness and patients without a diagnosis of mental illness is evident in end-of-life care. As well as stigma, poverty, lack of family support and social isolation, a number of patient-level factors, such as cognitive impairment, psychiatric disabilities and chronicity, are implicated in end-of-life care among patients with serious mental illness (Grassi et al. 2020).

In one of the first studies conducted in a palliative care setting (Chochinov et al. 2012), Canadian patients with schizophrenia were less likely to see specialists other than psychiatrists and less likely to be prescribed analgesics than a matched cohort without serious mental illness. More recent studies conducted in Australia, Taiwan, Sweden and France confirm that people with serious mental illness are less likely to receive proper palliative care.

Person-centred psychiatry

The purpose of Person Centered Psychiatry, which recognises the patient as a whole person beyond the limits determined by the illness and its symptoms, is to pursue the totality of the patient's health, promote the fulfilment of the patient's life projects, and encourage clinicians to see themselves as full human beings with high ethical standards and work in a collaborative, respectful, and empowering manner with patients (Mezzich et al. 2016).

A series of recommendations have been proposed to improve the quality of palliative care among people with serious mental illness (Callaway et al. 2021): 

• palliative care must be centred on the needs of the person with a therapeutic relationship based on respect, dignity, hope, and non-abandonment;
• people with serious mental illness must have their palliative care needs addressed, such as adequate pain and symptom control, maintenance of function, enhancement of quality of life, support for relationships, and possibility of dying with dignity;
• there is a need for service integration and continuity of care, with interdisciplinary and interspecialty teamwork, communication, and outreach into community agencies and shelters; 
• there is a need for cross-training in palliative care and mental healthcare.

Dignity therapy

Dignity therapy (DT) could represent an important intervention to enhance quality of life in palliative care for people with serious mental illness. Developed by Chochinov, DT is a brief, personalised and empirically based intervention developed for patients with life-threatening or limiting illnesses aiming to have patients talk about things that matter most to them, creating a permanent legacy that helps them strengthen dignity and face their suffering.

 

The protocol consists in 2-3 individual meeting with in which the patient is firstly shown the DT question framework and asked to consider what they might wish to speak about during the session. DT offers the participant an opportunity to reflect upon crucial existential and relational issues, and to review aspects of their lives and of self that they wish to be remembered. 

This process focuses on tasks such as settling relationships, sharing words of love and wisdom with significant others, and preparing a legacy of memories and shared values. About a week later, the DT meeting is carried out and audio-recorded. These meaningful memories, values, words of wisdom, and special messages are transcribed verbatim and then shaped into a narrative through a preliminary editing process. A session is dedicated to the final editing process with the participant, following which they are provided the final written legacy document, to be shared and passed along to family members and beloved ones. 

The ultimate intent of DT is to lessen distress, promote quality of life, validate personhood, alleviate suffering, and give meaning and purpose to life. There are few experiences of applying the DT to the psychiatry settings (see this observational study on depression), but DT appears to increase the sense of hope in patients and to have a role in the patients regaining the sense that life is meaningful. 

In the only DT study intervention available comparing people with serious mental illness and patients with cancer (Grassi et al. 2022), similar themes emerged such as:

• “Meaning” (“vitality", "self-evaluation", "pride", "evolution of self", “support")
• “Resources” (“support”, “resilience”, “family”, “encounters”)
• “Legacy” (“bequest for others”, “time to say”)
• “Dignity”
• “Stigma”.  

There is a need to reframe medicine in a dignity-oriented way, starting by fighting stigma and strengthen the collaboration between mental health and palliative care, with proper training for healthcare professionals as part of an interdisciplinary approach.

Luigi Grassi

This post is by Luigi Grassi, Professor and Chair of Psychiatry, and Director of the Department of Neuroscience and Rehabilitation at the University of Ferrara, Ferrara, Italy. He is also a partner of project EPIC.

Project launch for EPIC!

On Monday 13th May, we celebrated the launch of Project EPIC in Bristol. The launch was held at a beautiful and unique historic venue in Bristol, The Mount Without. We welcomed colleagues from the Universities of Bristol, Nottingham, and Birmingham, as well as representatives from our funder, Wellcome, friends and colleagues from other Universities, doctors, local art therapists and more. 

The evening began with an introductory address from the Principal Investigator, Professor Havi Carel, who introduced the topic of epistemic injustice in healthcare and why it matters. This was followed by short, three-minute snap-shot talks from each of the project's researchers summarising what interests them about the project. 

We heard from Lisa Bortolotti, Matthew Broome, Ian James Kidd, Michael Larkin, Michael Bresalier, Ellie Byrne, Fred Cooper, Dan Degerman and Kathleen Murphy-Hollies on a range of topics, including how epistemic injustice in healthcare relates to intersectionality and wider socio-political structures, phenomenology, emotional dysregulation, self-understanding, loneliness, and silence.

The EPIC project team 

The first part of the evening was closed by the Bristol University Singers, conducted by Elinor Cooper. The choir first sang an excerpt from ‘under the surface’ composed 2015, called ‘We measure time in breath’, followed by 'Bawo Thixo Somandla - Sidumo Nyamezele’ - a protest song widely sung during the apartheid period - and ‘We are’ by Ysaye M Barnwell.

The final of four pieces was composed by Toby Young, with lyrics by Jennifer Thorp. It was commissioned specially for Project EPIC. An excerpt as follows:

    What I keep is vigil

    What I pray is mute

    What I breathe is secret

    What I know is brute

The musical composition will grow as the project progresses, and we can't wait to see what themes emerge from the research that we'll do together.

The University Singers

The remainder of the event was spent networking and mingling with our guests. Bringing together researchers, healthcare practitioners, patients, and their advocates, clearly demonstrated the scope and the potential of the project to better understand, and ameliorate, epistemic injustices in healthcare. 

Recordings of our talks and the musical composition will be made available in due course. 

Watch this space!

Automated epistemic objectification in healthcare

The provision of healthcare is an intrinsically cooperative enterprise in which patients’ active engagement is crucial. It is paramount to recognize the value of patients' epistemic offerings in medical encounters and that their testimony is central to providing healthcare professionals epistemic access to their health state. These are fundamental preconditions to finding the most suitable course of medical action tailored to patients' needs in their singularity. 

However, the ever-growing body of literature tackling epistemic injustice in medicine and healthcare shows that identity prejudices often diminish patients’ credibility, thus hampering their possibility to play their role as epistemic subjects in medical encounters. Often, this leads to misrecognition of patients' epistemic status by, among others, hastily dismissing their testimony as irrelevant, thus leading to epistemic and practical harm. These situations are already highly problematic in healthcare encounters among human patients and physicians.

The introduction of artificial intelligence-based systems, such as machine learning (ML), in medical practice shows that medical care is no longer an exclusively human domain. So, what happens when an ML system, as an allegedly objective epistemic authority and powerful knowledge-generating entity, enters the picture by considerably influencing central medical procedures? As we argue in a recently published paper, we must be wary of ML systems' roles in crucial medical practices, such as providing treatment recommendations and diagnoses. More precisely, we advance the claim that ML systems can epistemically objectify patients in subtle but potentially extremely harmful ways that must be treated in their own right. In fact, these harms are not to be subsumed under other ethical concerns currently receiving extensive attention in the AI Ethics debate. 

Our paper discusses the hypothetical case of an ML system generating a treatment recommendation that goes against a patient's values. In similar situations, the patient is confronted with an unsuitable course of action. We argue that the patient risks being epistemically objectified if the system cannot pick up on their values and produce a new recommendation aligned with their expectations. This is the case because, crucially, when the patient needs to actively provide a piece of information relevant to further course of action, they are prevented from effectively doing so due to the system's setup. The bottom line is that the patient's status in this knowledge-producing endeavor may be degraded to merely being an object of medical action. 

Against these considerations, one could argue that a human physician could simply neutralize the recommendation produced by ML if it goes against the patient's values. However, we see this move as too simplistic for two main reasons. First, physicians may be epistemically dependent on an ML system and de facto unable to override it. Even though this is a surely undesirable scenario, it is recognizable in systems currently deployed. Second, disregarding ML systems' recommendations does not guarantee that physicians can readily find a further, more appropriate course of action. Rather, they might benefit from an ML system supporting their decision-making.

Overall, our general plea in the paper is thus to show the need for a flexible ML epistemology that can incorporate and adapt to newly acquired and ethically relevant information that patients can actively provide. This is key to avoid objectifying patients in morally salient medical interactions. 

Dr. Giorgia Pozzi is a postdoctoral researcher at Delft University of Technology (The Netherlands), working on the intersection between the ethics and epistemology of artificial intelligence (AI) in medicine and healthcare. She has a particular interest in tackling forms of epistemic injustice emerging due to the integration of AI systems in medical practice.

Stereotypes about young people who hear voices

Negative stereotypes associated with people who report unusual experiences and beliefs cause lasting harm and often undermine agency. In a series of workshops with the young people of the Voice Collective, facilitated by Fiona Malpass (Mind in Camden) and designed by Lisa Bortolotti and Kathleen Murphy-Hollis, we discussed the challenges that hearing voices poses for young people, at home, at school, and in healthcare settings.

The result of our conversations was a script created by the young people who participated in the workshops, where they described three forms of negative stereotyping that cause harm: 

• perceived dangerousness, leading to the thought that the young person poses a threat; 
• perceived lack of capacity or incompetence, leading to the thought that the young people cannot achieve anything valuable or challenging; 
• perceived difference or weakness, leading to social exclusion.

The script was turned into an animated video, produced by Squideo (click below to watch).

Snake or dangerousness

Snake

Perceived dangerousness is represented by Snake, who does not really pose a threat to humans but is feared and kept at a distance. Contrary to popular belief, most snakes are neither venomous nor dangerous. Snakes defend themselves if someone disturbs or attacks them but are not aggressive towards humans. Yet, many people make assumptions about their being dangerous. So, Snake in the video is right that his bad reputation is undeserved.

Butterfly or incompetence

Butterfly

Perceived lack of capacity is represented by Butterfly. Although she is an active pollinator contributing to the life of the garden, Bee teases her and suggests that she is lazy and useless, based on her past as a caterpillar, when she was seen eating all day long. Seeing a chewed leaf might make us think that caterpillars are good for nothing but destroying plants. However, caterpillars are actually very important to their environment even before they become pollinators. They prevent vegetation from growing too quickly and depleting nutrients in the soil. So Bee's attitude towards caterpillars and butterflies in our video is unjustified.

Wolf or exclusion

Wolf

Perceived difference or weakness is represented by Wolf. Wolf got an injury and because of that he was left behind by his pack. The other wolves assumed he would be a burden, unable to keep up and hunt for himself. But there is no reason that his small, temporary injury would have made his contributions to the pack less valuable in the long term. He would have probably needed some support until the injury was healed, and then he would have been in a position to run and hunt as fast as the other members of the pack.

A safe space

Snake, Wolf and Butterfly in the clearing

Being treated as dangerous for no good reason, being considered as a burden and nothing else, and being excluded by shared decision-making, are all harmful (and sadly common) experiences for young people who hear voices. Young people struggling with their mental health have a lot to contribute and with some support they can continue to pursue the projects that are important to them.

In the video, Snake, Wolf and Butterfly meet in the clearing to share their experiences and support each other. What happens in the clearing, sharing experiences in an environment that is safe and non-judgemental, is what happens in the Voice Collective. Young people who hear voices and have other unusual experiences or beliefs come together and connect with people who are in a similar situation. 

The video is an invitation to go beyond the stereotypes and see the person, not the label. To learn more about myths and truths about hearing voices, visit The Voice Collective website.

You find The Wolf, the Snake and the Butterfly and other animated videos introducing philosophical issues in The Philosophy Garden, a virtual philosophy museum gathering and producing resources for young people, educators, and the general public. 

The Philosophy Garden is a project run by EPIC co-investigator Lisa Bortolotti, with the collaboration of Kathleen Murphy-Hollies, Anna Ichino, and Fer Zambra.

Epistemic Microaggressions in Healthcare

In its relatively short history, the growing literature on epistemic injustice in healthcare has come a long way in highlighting the distinctly epistemic dimensions of medical encounters that can lead to a variety of injustices for patients. Such injustices are often the result of differences in relationships of institutional, professional, and social power (Kidd and Carel 2017, Freeman and Stewart 2024, Stewart and Freeman, 2022). 

This literature is mostly focused on how phenomena such as testimonial injustice and hermeneutical injustice render patients epistemically vulnerable. Additionally, it has helped to illuminate some of the ways in which patients from marginalized groups have their epistemic agency constrained, undermined, or ignored as they attempt to make claims about their bodies, identities, or health status to healthcare professionals. However, this literature has only recently started to attend to some of the more subtle, covert, and insidious mechanisms of epistemic dismissal.

 
In our recently published book, Microaggressions in Medicine, we engage with some of these seemingly subtler forms of epistemic (and other) types of injustice and harm in medical contexts. Let’s zoom out to mention the overall aims and goals of the book before zooming back in to focus on the epistemic dimensions of these injustices.

The two main theoretical aims of Microaggressions in Medicine are to reconceptualize how microaggressions have been understood by psychologists and philosophers and to introduce a new conceptualization of microaggressions that we call a harm-based account. 

Our harm-based account categorizes microaggressions according to the kind of harm that results for those who experience them. As such, we propose and argue for the following three kinds of microaggressions: epistemic microaggressions that result in epistemic harm, emotional microaggressions that result in emotional harm, and self-identity microaggressions that result in harms to one’s sense of self.

Microaggressions in Medicine (2024)

There are three applied aims of the book. 

• Using first-personal narratives, case studies, and testimonies of patients who are members of marginalized groups, we develop this harm-based account within medical contexts. 
• Analyzing these case studies, we illuminate the serious and enduring harms of microaggressions and argue that they can ultimately lead to delaying or avoiding medical care, damaged trust relations with healthcare professionals, and ultimately worse health outcomes for patients who experience them. 
• We introduce practical tools and strategies to help healthcare professionals reduce microaggressions in their practices and institutions, thereby diminishing harm caused to patients.

In what follows, and drawing on chapter 4 of the book, we focus on epistemic microaggressions, epistemic harm, and discuss why attending to epistemic microaggressions is an important part of the larger picture of epistemic injustice in healthcare.

In medical contexts, epistemic microaggressions are intentional or unintentional verbal or gestural slights made by healthcare professionals that dismiss, ignore, or otherwise fail to recognize claims that patients make about their bodies or health. Epistemic microaggressions result in epistemic harm to recipients (here, patients), namely, harm to them in their capacity as knowers. 

One example of an epistemic microaggression that we develop in the book is the story of what happened to the famous sociologist, professor, writer, and MacArthur “genius” award winner, Tressie McMillan Cottom. Despite her social standing and countless intellectual and academic achievements, as a self-described fat, Black (and at the time, pregnant) woman, Cottom knew that given her identity, she would face an array of discriminations. For this reason, she carefully chose her physicians. Or so she thought.

When she was four months pregnant, bleeding and experiencing acute pain, Cottom knew that something was terribly wrong. Yet when she and her then husband arrived at her doctor’s office, instead of being seen immediately or being sent directly to the emergency department, she was told to sit patiently in the waiting room. When she finally got to see her doctor, he looked at her and quickly said that she was probably just too fat and that for “women like her,” spotting was typical at this stage of pregnancy. She was sent home.

When, later that night, her pain escalated, the on-call nurse assured her over the phone that because the pain was in her bowel and not her lower back, that it was probably constipation and that she should try to go to the bathroom. After three days of such pain and no sleep, Cottom went to the hospital, where she was told that she’d probably just eaten something that was “bad” for her. 

After insisting that she get an ultrasound, it showed the fetus, in addition to two large tumors. Upon seeing this, the nurse scolded Cottom: “You should have said something” (Cottom 2019, 84). Soon thereafter, Cottom went into early labor. She gave birth to her daughter, who died soon after she was born (ibid., 85). While making plans for how to handle her daughter’s remains, another nurse said: “Just so you know, there was nothing we could have done since you never told us that you were in labor” (ibid.).

There are countless microaggressive harms that Cottom experienced. It’s important to underscore however, that the result of those microaggressions was nothing micro. Our analysis focuses on how racialized and gendered epistemic microaggressions combine in ways that are unique to Black women (what we call the misogynoir of microaggressions).

In this case, it was clear that Cottom knew that there was something wrong, tried to convey this knowledge to her healthcare team, and continued to be viewed as lacking credibility with regards to her knowledge of her body. As a result of the entrenched biases and stereotypes about Black women, Cottom experienced a panoply of racialized gendered epistemic microaggressions. 

As a pregnant Black woman who was bleeding and in pain, her bleeding was attributed to her fatness. Then, her pain in her bowel was dismissed as being the consequences of something “bad” that she’d eaten, where “bad” has racist undertones about the kinds of food that Black people eat. Finally, after the death of her newborn daughter, she was blamed for not having spoken up sooner, with the implication that the death was in part her fault and could have been prevented had she spoken up.

Cottom is powerless relative to the healthcare professionals.

Her knowledge of her body is ignored.

Repeatedly, healthcare professionals assumed they knew better.

On account of her race, gender, and body size, Cottom suffered the epistemic harm of not being recognized as a credible knower, the practical harms of severe physical pain, the death of her daughter, as well as the enduring trauma of the whole experience.

These consequences are macro and tragic. But we are most concerned with the epistemic racialized gendered microaggressions that contributed to them. Cottom’s credibility as a knower was denied due to her race, gender, and body size and as a result, her knowledge claims were ignored or dismissed.

The racialized gendered epistemic microaggressions that Cottom experienced are reflections of imbalances in epistemic and other sorts of social power that themselves mirror broader patterns at play both within and beyond healthcare contexts. Healthcare workers belong to an elite professional class. They’re assumed to have epistemic authority within and beyond that context. They often exert epistemic power over their patients by blocking them from making meaningful contributions to clinical exchanges. This epistemic situation both reflects and reifies assumptions about power in the epistemic domain. For example, it makes clear who creates, controls, and deploys knowledge and who doesn’t; who is “rational” or “objective” and who isn’t (cf. Code 1991).

The epistemic microaggressions on which we have focused, combined with more macro and explicit stereotypes and assumptions about Black women, result in epistemic harms to patients: they’re denied the full status of knower, which is central to human dignity and value (Fricker 2007; Pohlhaus Jr. 2017; Dotson 2011). 

Because the epistemic contributions of patients who are members of marginalized groups are routinely blocked, over time this can result in patients coming to doubt their own epistemic capacities, especially as microaggressions add up and their harms accumulate (Evans and Mallon 2020). As we saw and as we develop further in our book, epistemic microaggressions can also lead to harmful health and other consequences.

As Cottom’s case makes clear, epistemic microaggressions are harmful to the epistemic status and agency of marginalized patients. A complete understanding of epistemic justice and injustice in healthcare and the myriad ways they manifest must include attention to the subtle epistemic dismissals and indignities that epistemic microaggressions reflect.

Heather Stewart is Assistant Professor of
Philosophy at Oklahoma State University.

Lauren Freeman is a Professor of 

Philosophy at University of Louisville.