"Trauma is not being seen or heard"

 epistemology 

noun, epis·te·mol·o·gy i-ˌpi-stə-ˈmä-lə-jē

the study or a theory of the nature and grounds of knowledge especially with reference to its limits and validity

Two weeks ago I went to dinner and drinks with members of the London ACEs (Adverse Childhood Experiences) Hub, it was a small group in which everyone came from very different backgrounds and professions including some with lived experience. You can see some of us here.

It struck me that the diversity of our group was evidence that expertise in Adverse Childhood Experiences and developmental trauma cannot be held by any specialty. Nobody can claim epistemic dominance. Like the blind men feeling an elephant and each being certain that the whole creature resembles the part they are feeling, in matters of trauma nobody can claim to be able to see the whole picture. Modern medicine is structured with specialists at the top and generalists (like GPs) at the bottom.

 

The Telegraph newspaper has had a series of headlines recently pointing out that GPs don’t know enough about cancer or antidepressants or anything else. According to The Telegraph if people are sick, they ought to a specialist. These are easy accusations to make and have been news headlines for my entire career and will continue until journalists understand and value the fact that generalist knowledge about the ways different illness interact is not the same as the accumulation of number of different specialisms. There were two GPs at the LAH dinner and drinks, evidence perhaps that GPs more than any other specialty see the ways that biography and biology are constantly affecting each other leading to familiar pattens of physical, psychological, and social disruption. Nevertheless, our medical perspective only captures part of the picture which is why our group includes people working in criminal justice, racial justice, education, community activism, parenting support, and more. We depend on one another to see the whole picture.

A few days after the dinner, I attended an interdisciplinary workshop about trauma with philosopher Havi Carel and a range of speakers including philosophers, literary scholars, educators, and a music therapist. Once again, none of us could claim epistemic dominance. Professor Havi Carel is perhaps best known for her work on Epistemic justice in healthcare. Epistemic injustice in healthcare happens when a professional assumes that because of certain characteristics their patient is an unreliable narrator and interpreter of their own experiences. Consequently they fail to listen to or take seriously what their patient has to say. The only story that counts is the medical history and the only interpretation that matters is the diagnostic formulation. Patients experience not being seen or heard, i.e. invalidation.

People who are suffering the consequences of trauma, living with what I describe as the trauma world of hypervigilance, shut-down, toxic shame, dissociation and harmful coping strategies, are especially likely to have characteristics that professionals assume render them unreliable witnesses. These include being a child or female or trans, being black or other ethnic minority, being neuro-divergent or having a mental illness, having any kind of physical or mental disability, having an addiction past or present, being homeless, having low levels of literacy or educational attainment and so on. Intersectionality matters, so a Black woman with a mental illness and an addiction is subject to multiple assumptions and is especially vulnerable to Epistemic Injustice. One of many valid definitions of trauma that I’ve heard from researchers including Bessel van de Kolk and Jacob Ham as well as survivors is,

“Trauma is not being seen or heard.”

Trauma happens under conditions of overwhelming stress where those affected are unable to talk about what’s happening because it is too dangerous or there is nobody who will listen. They learn to bottle it up and in so doing, increase the risk of the kinds of inflammatory and autoimmune disease that are hugely over-represented in people with traumatic life histories. A healthcare professional represents someone with power who may cause the patient to re-experience feelings of powerlessness, but also has the potential to provide a safe environment and attuned presence. If they feel safe enough, patients may want to talk about what has happened to them. If we refuse to listen or don’t listen carefully enough, then they may experience the traumatic invalidation that they have suffered before, and the potential harm is enormous. Patients with trauma are at greater risk of Epistemic Injustice and suffer greater harm from it.

My own Achilles heel as a doctor is explaining too much. I recently discovered a quote from Donald Winnacott, a child psychotherapist and paediatrician who worked near my practice over 50 years ago and it was reassuring to know that we have at least this in common:

“It appals me to think how much deep change I have prevented or delayed in patients in a certain classification category by my personal need to interpret. If only we can wait, the patient arrives at understanding creatively and with immense joy, and now I enjoy this joy more than I used to enjoy the sense of having been clever. I think I interpret mainly to let the patient know the limits of my understanding. The principle is that it is the patient and only the patient who has the answers. We may or may not enable him or her to encompass what is known or become aware of it with acceptance.” Playing and Reality

In my teaching about trauma, I use a quote from Leslie Jamieson, The Empathy Exams:

“Empathy is asking the questions whose answers need listening to.”

I hope to persuade the doctors and students that I teach, as well as constantly reminding myself that you can demonstrate your expertise by the questions you ask. In so doing we can enable patients to tell their stories and come up with interpretations that help them make sense of their experiences. It’s important to remember that figuring why you are like you are doesn’t necessarily make things better, and may even make things worse, but it is a necessary part of a healing process. Making sense of painful lives through stories is not a radical departure from clinical medicine, but an essential and inseparable part of it. Stories are how medical knowledge is transmitted and ‘how doctors think’ even if we’re unaware of it.

In summary, understanding epistemic (in)justice is essential for trauma-informed care because patients affected by trauma are more likely to not be listened to or taken seriously and are more likely to be harmed by invalidation. Because no specialty within medicine can claim epistemic dominance, they experience what Psychoanalyst Michael Balint described as the ‘collusion of anonymity,’ where “the patient is passed from one specialist to another with nobody taking responsibility for the whole person.”

The answer for me lies in creating a safe environment and continuity of care with well cared-for and respected generalist professionals who can truly listen.


Thanks to Flo, who has been helping me teach this and has inspired me to try to figure this out.

This post is authored by Jonathon Tomlinson who has been a GP and educator in Hoxton, East London for over 20 years.

Jonathon is especially interested in the intractable problems that characterise 'deep end' general practice like complex-trauma, chronic pain and the intersections between biography and biology.

Reflections on trauma

On November 29th, 2023, the EPIC project and the Bristol Centre for Health Humanities and Science (CHHS) convened a multidisciplinary, collaborative workshop involving health practitioners, academic researchers, and students to explore lived experiences of trauma. 

More specifically, the workshop delved into trauma as experienced by clinicians, their patients, and marginalized or vulnerable societal groups, including children, women, and people from socioeconomically disadvantaged populations. To explore these experiences, we were joined by five speakers with expertise in trauma-related research.

In a timely talk exploring childhood trauma, Dr. Maya Mukamel explained how the ambiguous legal and political status of children in some countries renders them susceptible to human rights violations and various moral and epistemic harms. 

This was followed by an exploration of post-traumatic stress disorder (PTSD) in Virginia Woolf’s Mrs. Dalloway, where Dr. Lizzie Gourd highlighted the trauma that can occur during and in the aftermath of war. This fuelled discussion about post-World War II Britain, characterized by enduring scars and a ‘wilful determination for closure.’

Other talks explored how trauma is encountered in healthcare and medical education. In a talk titled ‘The Healing Paradox,’ Dr. Louise Younie explored the role of 'creative inquiry' using artistic practices to equip clinicians with conceptual tools for navigating emotional complexities. She also cautioned against resilience-focused medical discourses, which might inadvertently lead to perfectionism as well as feelings of shame and inadequacy. Alternatively, Dr. Younie proposed an approach centred around ‘flourishing’ and finding creative pathways to integrate trauma-informed care into mainstream medical education.

Echoing these ideas, Dr. Jonathon Tomlinson also stressed the significance of embracing holistic patient perspectives, with greater consideration for intersectionality, lived experience and personal histories. Building on this, he explained that trauma typically escapes diagnosis, manifesting in various chronic and acute illnesses, posing challenges for patients.

Concluding the sessions, Kate Binnie, a music therapist, PhD student, and palliative care practitioner, described the relationship between lived experiences involving breathlessness, trauma, and epistemic injustice. In particular, Kate explained how a body-mind approach, employing song and breathwork practices, can help alleviate potentially traumatic experiences of breathlessness for individuals approaching the end of life.

Collectively, these discussions underscored the interconnectedness of trauma and epistemic injustice, particularly how interactions with clinicians can either alleviate or exacerbate trauma. The speakers unanimously emphasised the need for shared concepts and practices to address trauma experiences, benefiting both healthcare practitioners and their patients.

This post was authored by Kathryn Body, a PhD student in the Department of Philosophy, at the University of Bristol. 

Her research is founded on a multidisciplinary approach, combining insights from social anthropology and phenomenology to qualitatively analyse survey data focused on lived experiences of the Covid-19 pandemic in the UK, Japan, and Mexico. 

Kathryn uses embodied frameworks to create better understanding of the ways people’s relationship with their bodies, other people, and their environment changes during infectious disease outbreaks. She is also a graduate teacher, postgraduate representative, and administrator at the University of Bristol’s Centre of Health Humanities and Science (CHHS).

Project EPIC

On the Wellcome Trust website there is now an article by Professor Havi Carel on EPIC, Epistemic Injustice in Healthcare, summarising the main objectives of the project for the next six years and emphasising the interdisciplinary and collaborative nature of the project. In Carel's words:

"EPIC is the first research project to look systematically at epistemic injustice across several domains within healthcare and to document empirical evidence of it.

There are a number of things we can do with this evidence. Firstly, we can make sure the theoretical concept of epistemic injustice works in this context. Does it need updating or changing?

Then we want to generate material that can benefit patients and healthcare professionals." 

Something that renders EPIC unique is the aim of testing the notion of epistemic injustice by investigating its utility in a number of different healthcare contexts. As Havi Carel says:

"Part of the EPIC project is focussed on six case studies, historical and contemporary, of real-life experiences at different points across a lifespan.

These case studies will help us test the validity of the concept of epistemic injustice by exposing it to very different empirical contexts and theoretical approaches."

Watch this brief video if you want to know more about EPIC:

Addressing Epistemic Injustice from the Perspectives of Health Law and Bioethics

In this post, Lisa Bortolotti reports from a symposium organised by Mark Flear to explore interdisciplinary perspectives (law, philosophy of psychiatry, bioethics, sociology, and more) on epistemic injustice. The event was hosted by City University on 15th September 2023. The report covers two sessions of the event. The third session featured talks by Anna Drożdżowicz (on epistemic injustice and linguistic exclusion); Miranda Mourby (on reasonable expectations of privacy in healthcare); and Neil Maddox and Mark Flear (on epistemic injustice and separated human biomaterials). 

The City Law School, venue of the symposium

David Archard (Queen’s University, Belfast) talked about lived experience and testimonial injustice. Lived experience is being increasingly used in debates on a number of controversial areas—as a source of special authority on a given subject. The appeal to lived experience often works in resisting claims that contradict lived experience. Is refusal to listen to lived experience a form of testimonial injustice? For Fricker, testimonial injustice when the speaker receives less credibility than they deserve. The credibility deficit is due to an identity prejudice in the hearer. Testimonial injustice can manifest in different forms (disbelief, ignoring, rejecting). Are statements of lived experience reliable? How do we establish that? What if the people with lived experience are deluded or mistaken about what has been experienced? Lived experience can be source of advice (consultative) or authority (authoritative). Reasons to consult are not necessarily reasons to consider lived experience authoritative. Also, there is an important difference between what lived experience is and what can be inferred from lived experience. Injustice is in not listening and not giving weight.

The second talk by Lisa Bortolotti focused on research with Kathleen Murphy-Hollies (both at the University of Birmingham) on curiosity as an antidote to epistemic injustice. Lisa and Kathleen talked about the complex history of curiosity in the philosophical literature from a sin to a virtue, and argued that curiosity can be both an epistemic virtue when people disposed to attain knowledge have some basic skills for pursuing curiosity, use their judgement, are well motivated, and find pleasure in the pursuit of curiosity. Lisa and Kathleen also suggested that curiosity can be a moral virtue when directed at other people as it can support enhanced mutual understanding. To argue their case, they discussed cases in which people’s experiences are contested and people’s views are marginalised and pathologized. In those cases, an interpreter being curious helps them better understand the speaker’s perspective. 

The third speaker was Jonathan Montgomery (University College London) discussed public reason and religious voices in judicial reasoning. Jonathan focused on cases where courts and parents disagree on whether life support should be stopped for children. Often parents are motivated by religious views in arguing that life support should continue. Other cases are where a medical treatment or intervention is not wanted by the family due to religious convictions (e.g., refusing a blood transfusion that may be life saving). Are the courts dismissive of parents’ perspectives? Is there a shared reality that is misunderstood by one party and not the other? How are credibility markers distributed? Jonathan reviewed a number of interesting and controversial cases where there are several epistemic issues at play, including risk assessment and disability discrimination. How to address these problems? One suggestion is to avoid the court and try mediation first, on the assumption that less epistemic injustice occurs in a mediation effort. Another suggestion is to think clearly about epistemic authority: is it medical competence or lived experience? Whose voice is going to be powerful in the given context? The presentation finished with a super interesting table detailing different ways of thinking about events as instances of epistemic injustice.

Next, Priscilla Alderson (University College London) focused on epistemic injustice in the context of children having major surgery. She reviewed how we moved from children themselves and parents too from being removed from care to important questions being raised about the role of parents and children in making healthcare decisions. Priscilla’s research with patients and surgeons suggests that it is key to obtain consent from children for surgery, even very young children. They can be explained what is happening to them—we can inform and involve them in the procedures and the reasons for them. A famous case of conjoined twins was examined in some detail: a Senegalese father was pressurised into agreeing to surgery to separate his daughters after being told that one of them would not survive due to her weaker heart. In the BBC programme on this case there was a clear emphasis on medical expertise and undermining the parent’s view and there was absolutely no reference to what the twins thought or wanted. Even the ethics committee’s intervention was not helpful as it did not include the concern about how the surviving child would have felt after surgery, realising that she was alive because of her sister’s sacrifice. Priscilla talked about the need for a more engaged and embodied bioethics.

Magda Furgalska (York Law School) contextualised epistemic injustice within mental health law research. In Magda’s research with people who experience credibility deficits in legal context, she found that many participants were surprised that she did not require to see medical records or other evidence to corroborate what they were saying. And also, when she presented her work at conferences, audiences often questioned whether research participants did tell her the truth. This emerges clearly in the context of issues about insight. Mental health patients are often experiencing a catch-22. For patients, it is not just a question of recognising that they are ill but to comply with the clinicians’ view of their condition. So, if patients realise that they are ill and they should be going to hospital, then for the clinician they are not seriously ill and they shouldn’t be hospitalised. If they do not realise that they are ill and they don’t think they should go to hospital, then for the clinician they are seriously ill, and they should be hospitalised—and their report is not to be relied on anyway. Insight and capacity are often used interchangeably, and compliance is used to determine both insight and capacity. Deciding whether someone has capacity on the basis of whether they have insight, is a clear misapplication of the law, and also a case of silencing and testimonial harm as capacity is denied pre-emptively without being tested.

Magdalena Eitenberger (University of Vienna) discussed epistemic injustice in the area of chronic illness. Magdalena introduced the concept of “patho-curative epistemic injustice” to apply to diabetes and hepatitis C. This concept is drawn from the concept of patho-centric epistemic injustice developed by Havi Carel and Ian Kidd. The idea is that some people experience a credibility deficit due to their illness and hard facts are prioritised over lived experience reports. The new concept is supposed to concentrate on “curedness” and how in some cases of chronic illness an understanding in terms of being cured or fixed is not available. Biomedical models offer a reduced and simplistic conception of disease and health where problem-fixing is central. But more holistic therapeutic solutions are ignored. This also results in patients not being able to talk about their experiences over and beyond the idea that a person’s body can be either fixed or damaged. What “cured” means is not how the person feels (whether they feel healthy) but what their glucose levels are. Lived experience is not considered relevant and this impacts healthcare policy and welfare too. The role of the person as someone who manages their health trajectory is also undermined if the person is given the (technological) resources to monitor their health.

Next, Swati Gola (University of Exeter) addressed epistemic injustice in the India’s traditional healthcare system. Indian system of medicine is very heterogeneous system, some indigenous and some introduced from abroad. There are a lot of folk traditions at the margins (such as healers) which have been sidelined as unscientific after the British occupation. How should we understand indigenous health traditions in the light of colonialism? Is there any epistemic injustice against those traditions? Swati analysed the current situation in India, suggesting that knowledge colonialism is still a big problem, due to the dominance of the biomedical models and the power of the medical professions as seen through the lens of Western medicine. A case was made for epistemic justice to be essential to the decolonisation of knowledge and the decolonisation of the self via issues of hermeneutical injustice.

Epistemic Injustice, Naturalism, and Mental Disorder

In this post Dan Degerman presents a paper, "Epistemic injustice, naturalism, and mental disorder: on the epistemic benefits of obscuring social factors", recently published in Synthese. A version of this post appeared on the Imperfect Cognitions blog on 18th October 2023.

Naturalistic understandings that frame human experiences and differences as biological dysfunctions constitute a major source of epistemic injustice in disease and disability, according to many philosophers.

Epistemic injustice refers to injustices committed against people in their capacity as knowers. This occurs, for example, when someone is disbelieved because of their social identity or when a lack of suitable interpretive resources means that someone cannot make their experiences intelligible to themselves or others. Critics have argued that naturalistic understandings of human experiences and differences can lead to both kinds of epistemic injustice because they tend to obscure the social factors involved in causing those experiences and differences. 

Though such understandings can indeed contribute to epistemic injustice, I think the epistemic benefits they can offer people vulnerable to epistemic injustice have been overlooked.

Consider an apparent exemplar of a naturalistic understanding, namely, the neurobiological understanding of mental disorder. According to that understanding, the key cause of the disorder is some dysfunction in the individual’s brain.

Critics of the neurobiological understanding of mental disorder argue that it prevents people from considering the range of possible factors that might contribute to their often distressing experiences. That is because it decontests the experiences involved, making alternative understandings that focus more on social factors seem irrelevant. Empirical research on what has been called the seductive allure effect of neuroscience indicates the critics are right. But what those critics generally fail to appreciate is that for some people with mental disorder, this is an epistemic feature rather than a bug.

After all, people with psychiatric diagnoses often struggle to get others to take their distress and needs seriously. For instance, participants in a recent ethnographic study by Rebecca Lane recounted how their efforts to discuss their bipolar disorder had been met with trivializing responses. Those responses drew on the contested status and alternative understandings of bipolar disorder to make it appear less serious. As Jake Jackson has argued, such trivialization can constitute and perpetuate epistemic injustices against people diagnosed with mental disorder. 

The decontesting capacity of the neurobiological understanding of mental disorder can help people with psychiatric diagnoses avoid trivialization and associated epistemic injustices. At least, that is what the experiences of some participants in the Lane’s study suggest. For example, one of them said: 

[W]ith bipolar[,] people generally think oh he’s lazy—it’s fashionable—a lot of people get misdiagnosed and you know—but if I say brain disorder and my neurotransmitter[s] don’t do what they’re supposed to… people just leave it like that. (pp. 161-2) 

This person has effectively deployed the neurobiological understanding of bipolar disorder to decontest his suffering and, thereby, avoid epistemic injustice.

Their testimony is not evidence that would-be trivializers abandon their trivializing beliefs when met with a neurobiological understanding of mental disorder. But it is evidence that such an understanding can prevent outright dismissal and that some people with mental disorder value that function highly.

I’m not trying the argue that the neurobiological understanding of mental disorder or a naturalistic understanding of disease and disability more generally is unproblematic. Some research shows that people who endorse a neurobiological understanding of mental disorder are more likely than others to endorse stigmatizing claims about people with a psychiatric diagnosis. So we should think carefully about how and when that understanding is deployed.

But, if we are serious about addressing the epistemic injustices that people with psychiatric diagnoses suffer, we cannot simply ignore first-hand testimonies about the value that naturalistic understandings of mental disorder have for those people. Doing so and simply pushing ahead with projects to undermine those understandings risks exacerbating the very problem we are trying to solve.

Michael Bresalier on EPIC

Michael Bresalier is a lecturer in the history of medicine at the University of Swansea. He is also a member of EPIC and will contribute a case study on epistemic injustice in tuberculosis vaccination programmes.

Michael Bresalier

 

Hi Michael! What is your main research interest?

My research interest has been with the production, legitimisation, circulation, and consequences of biomedical knowledge of human and animal health and disease. Much of my work has been on infectious and zoonotic diseases (infections that move between human and non-human animals). 

My new book, Modern Flu (Palgrave 2023), traces the long process by which influenza was framed as a viral disease and how new virological ways of knowing influenza reshaped clinical, public health and popular approaches to the disease. 

A key concern of mine is with how disease categories vary and change, and how they are negotiated and incorporated into medical practices and experiences (broadly construed). I am especially interested with how agreement is formed in medicine at various levels, whose ideas and interests are included or excluded in the process, how medical knowledge is or is not shared, and the ways agreed disease concepts or definitions affect diagnoses, treatment, and access to healthcare resources. 

Why do you think it is important to study epistemic injustice in healthcare?

Although people working on the history, anthropology or sociology of medicine and health have used different terms and frameworks, forms of epistemic injustice have been a central concern for some time. Among other things, what such research has shown is that differentials in patients’ and sufferers' testimonies or the knowledge they possess to negotiate health or illness are socially determined and have shaped healthcare systems and health outcomes. 

But I think epistemic injustice is an important framework for gaining critical new insight into how power relations operate in healthcare and, most importantly to me, as way to think about what justice in healthcare might look like and what forms it might take. This kind of normative move is not something historians usually make. Collaborating on this project is a great opportunity to reflect on how historical perspectives can help address epistemic injustice and make healthcare more equitable. 

What are you working on right now?

I have been working on a couple of different projects that tie into EPIC. One is a study of ‘gift’ economies in global health and medicine, with particular focus on policy and practical arrangements that have developed to facilitate ‘sharing’ vaccines between high-, middle- and low-income countries. I am interested in how different actors and organisations conceive of gift-giving as fundamental (or not) to addressing global health inequalities, including epistemic inequalities (i.e., the sharing and exchange of knowledge in making or delivering essential vaccines). 

A related project examines the implementation and experience of ‘selective' tuberculosis vaccination programmes in the UK (and elsewhere), that have targeted ethnic minority communities from or connected with countries that have a high incidence of tuberculosis. The project will integrate archival research on TB vaccine policies and programmes with oral histories/ethnographic studies of medical practitioners, TB service providers, parents and children, among others, to examine how selective vaccination has been framed, understood and experienced by different groups. 

A key aim is to highlight how uncertainties about TB vaccination have been negotiated as way to better understand vaccine hesitancy, while another is to empirically test if and how epistemic injustice manifested in vaccination policies or programmes. This will be the focus of my EPIC case study, 'Negotiating Immunisation: Epistemic (in)justice in tuberculosis vaccination programmes’.

Silence

This post is by Dan Degerman, Leverhulme Early Career Research Fellow at the University of Bristol. Dan is soon to join project EPIC. 

Some members of team EPIC: Matthew Broome, Ian Kidd, 
Dan Degerman, Havi Carel, Kathleen Murphy-Hollies, and Fred Cooper.

Silence is an important phenomenon in mental health. But while philosophers have had much to say about the social silencing of people with psychiatric diagnoses, other ways in which silence can feature in psychopathology have been underexplored. In a recent workshop at the University of Bristol, generously funded by the Leverhulme Trust, we sought to begin to address this neglect by exploring the different faces of silence in psychopathology.

Ian Kidd opened the workshop with a talk that explored painful silences common in bereavement grief. In particular, he focused on four silences, each characterised by a loss of communicative possibilities that follows the death of a loved one. This included, for example, silence as the loss of the distinctive communicative style of the deceased and silence as the permanent absence of narrative closure. For the person subject to these silences, they are painful for three reasons, Ian explained. Firstly, these silences cannot be filled. Secondly, they involve the awareness that the ways of being in the world the relationship with the deceased made possible are now impossible. Thirdly, they involve the awareness that one can no longer be the same person that one was with the deceased.

Ian Kidd

The second speaker, Richard Stupart, drew on accounts of investigative journalists working in South Sudan to shed light on some of the mental dangers of being silent. He argued that journalists are at a heightened risk of moral injury, referring to the negative psychological impact a person experiences when they are unable to respond to a situation in what they consider a morally appropriate way. Journalists in conflict and crisis situations are particularly vulnerable to such injury because they often find themselves subject to structural pressures that may prevent them from communicating their knowledge about morally charged stories.

Richard Stupart

Inner speech in mental disorders was the subject of the next talk by Sam Wilkinson. He defended what he called a strong dialogical account of inner speech, which entails that all inner speech is directed at a recipient, namely, ourselves. This account also suggests, among other things, that inner speech plays a central role in shaping our identity. Sam then outlined some ways this account can help clarify the implications of inner speech and its absence in different mental disorders. For example, the strong dialogical account indicates that negative inner speech in anxiety and depression is not just an epiphenomenon of pre-existing a person’s feelings but that it can create a downward spiral of those feelings.

 

Sam Wilkinson

The fourth talk by Anna Bortolan examined experiences of silence in social anxiety. Drawing on some distinctions proposed in a recent paper on silence in mood disorders, Anna showed that these capture experiences described by people with social anxiety as well. She then went beyond that account to argue that a further two experiences of silence can be discerned in accounts of social anxiety. The first is characterised by a perceived inability to fill certain silences when one wants to do so, and the second is accompanied by a diminished sense of agency over how silences are filled.

Anna Bortolan

Finally, in my talk, I argued for the importance of attending to first-person experiences of silence in psychopathology through a case study drawn from accounts of depression. Using a phenomenological framework inspired by the work of Merleau-Ponty, I described an experience common in first-person accounts of depression that I termed empty silence. This is an unpleasant experience that involves a solicitation to speak and a breakdown in a person’s habitual relationship with words, which confronts them with their own outward and inner silence. I proceeded to argue that if lived repeatedly, it may give rise to bodily doubt in one’s ability to speak.

Dan Degerman

If you are interested in learning more about the talks, presentation materials from most of them can be found here. The talks were followed by wonderful discussions with the interdisciplinary audience that was in attendance in the room and online, and I want to extend heartfelt thanks to all those who participated.

The workshop was the capstone event for my Leverhulme Early Career Fellowship. However, it also served as an informal launch event for the EPIC project, with many of its team members in attendance, including Ian Kidd, Havi Carel, Matthew Broome, Fred Cooper, Kathleen Murphy-Hollies, and myself. The conversations and explorations that began during this workshop on silence and psychopathology will continue as part of the project, and if you are interested in contributing or participating in some way, please do get in touch.

Fred Cooper joins EPIC

More good news for project EPIC! Fred Cooper, currently a Research Fellow at the University of Exeter, will join EPIC as a Senior Research Fellow based in the Law School at the University of Bristol. We asked Fred a few questions about current interests and future plans.

Fred Cooper

Hi Fred! What is your main research interest?

Most of my work to date has been about attempting to understand the historical, political, and experiential dimensions of loneliness, although this has led me to spend substantial amounts of time with other problems, particularly shame, which share a porous border. As a historian of medicine, I’m interested in how the idea of loneliness that we work from today has been assembled over time, in different processes and contexts and by individuals and groups with different claims to expertise. 

I have an upcoming article, for example, on loneliness, shame, and personality, which uses historical methodologies to unpick some of the ways that loneliness has been (and continues to be) framed as a matter of personal failure. Maybe predictably given my disciplinary training, I’m also interested in temporal representations of loneliness (i.e., as a crisis or epidemic linked to the present or the very recent past); I’ve written recently on the history of this strain of thinking and why I think it constrains the kinds of questions we need to ask.

Threaded through this work has been a series of important questions over how knowledge is built and by who. Focusing primarily on loneliness, my case study at EPIC will tack between historical, philosophical, and engaged research methods to think critically about how epistemic injustices are produced and perpetuated over (relatively) long periods of time, and the impact this has on opportunities for epistemic, experiential, and structural redress.

Why do you think it is important to study epistemic injustice in healthcare?

I strongly suspect that a significant number of people working in the medical humanities, social sciences, and other kinds of health research – particularly where that work involves co-production, engaged research, or other kinds of participatory methods – are fundamentally concerned with epistemic injustice, even when they don’t use that precise framing. 

Just the other day, I spoke at a knowledge exchange symposium between the University of Exeter’s Wellcome Centre for Cultures and Environments of Health (my workplace for the past six years), and the Copenhagen Centre for Health Research in the Humanities; in almost every talk or discussion, problems of service user testimony being discarded or derided were addressed, or of complex systems of knowledge being created around – but not necessarily with or for – the people concerned. 

As well as opening up new lines of research and new ways of identifying and ameliorating harm, epistemic injustice is a vastly useful conceptual tool for better articulating and understanding many of the phenomena that researchers are already substantively engaged with. In the ethical imperative to work on epistemic injustice in ways that don’t unwittingly reproduce hierarchical or extractive epistemic processes, it can also inform and improve our engagements with different partners and publics.

What are you working on right now?

I’m currently working on a resource which draws out insights from historical research on loneliness for a wider, non-humanities audience. Co-authored with 15 other scholars, it’s an overture to other disciplines - and health policymakers too - to work in closer dialogue with historical questions, findings, methods, and researchers. One of many reasons I’m excited about joining EPIC is the chance to show what historical practice can do in this kind of outward-looking interdisciplinary space, particularly as historical contributions to the existing literature on epistemic injustice have been relatively few. 

I’m also working on several talks: my first Keynote, for a symposium on loneliness and shame at the University of Bristol, and a paper on loneliness and culture for a seminar with the European Commission’s Joint Research Centre. Ahead of starting work at EPIC in the new year, I’m beginning to sketch out how my case study will work in practice, thinking about sources and archives, and putting together thoughts on possible collaborations with the rest of the team.

Undermining versus Accepting Young People's Experiences

Laura was brought to the emergency department (ED) by ambulance after a pharmaceutical overdose. Earlier in the assessment, she said she visited her General Practitioner earlier in the day seeking mental health support but she didn't feel she got the support she needed. She reported that she later took a pharmaceutical overdose because she felt very suicidal. The practitioner Laura talks to in the ED  recharacterizes Laura’s experience of suicidal ideation as brief and her act as impulsive. 

What happens in such cases?

In a new open access paper (Bergen et al. 2023), a team of academics and young people with lived experience of mental health services analyse conversations in clinical encounters and observe that people's description of their own experiences is often challenged. These episodes where the practitioner either implies that the patient's report is implausible or undermines it with alleged counter-evidence can be understood within the framework of epistemic injustice. The authors write:

"From a philosophical perspective, applying the concept of epistemic injustice to the clinical encounter enables us to conceptualize the attitude of an epistemically privileged party not as a lack of respect or a failure of empathy (which would not be specific enough) but as an act of injustice toward the party who is epistemically subordinate. The injustice amounts to assigning reduced credibility to a patient’s reports, effectively preventing the perspective of the patient from contributing to shared knowledge and decision making. As epistemic injustice concerns knowledge first and foremost, this does not simply tell us that dismissing a person’s perspective due to prejudice is morally objectionable. Rather, it is problematic from an epistemic point of view because the opportunity to gather knowledge that would benefit both parties and society at large is missed."

 

Clara Bergen

In this table from the paper, we can see that several studies have already gathered evidence of this practice of implying implausibility or undermining the patient's report of their experiences, and that the practice can take several forms:

In the case I started with, one of the five cases examined in the paper, young person Laura's reported intention to kill herself is challenged on numerous occasions, via different strategies: 

1. asking questions that anticipate a compromising response ("And I hear you called the ambulance straight away?"); 
2. asking questions that imply implausibility or inconsistency ("So when you called 111 what did you expect them to do?"); 
3. juxtaposing contrasting information ("You called them so that they could get you help"); 
4. implying information that provides evidence of an alternative characterisation ("So would you say that you took the tablets at the spur of the moment?").

As a result of the encounter, the practitioner concludes that Laura took the tables impulsively and suggests that, if Laura feels suicidal again, she should get support from people she knows or call the Samaritans. The involvement of the rapid response team is deemed unnecessary, and Laura is not referred to mental health services.

Rose McCabe

Future research should explore to what extent recharacterization could be minimized through further communication training or unconscious bias training, and to what extent a long-term solution may lie in increasing accessibility of mental health services for people who self-harm and experience suicidal ideation.

Dan Degerman joins EPIC

Excellent news for project EPIC! Dan Degerman, currently a Leverhulme Early Career Fellow, will join EPIC as a Senior Research Fellow based in the Philosophy Department at the University of Bristol. We asked Dan a few questions about current interests and future plans.

Dan Degerman

Hi Dan! What are your main research interests?

Hello! I am interested in issues at the intersection of mental health, emotions, and politics. 

For example, my first monograph, Political Agency and the Medicalisation of Negative Emotions, examined how the growing tendency to talk and think about emotions like anger and fear in terms of mental health problems affects our ability to act politically. It did so through a series of case studies of political movements and events – ranging from the Brexit referendum to the psychiatric service user/survivor movement – in which people’s capacity to participate in public life was called into question.

Since completing the book, I have been focusing on experiences of powerlessness among individuals with mental illness, particularly in terms of how symptoms, diagnoses, and stigma may lead such individuals to speak or be silent. These are, of course, issues that are closely related to epistemic injustice in healthcare as well as my case study on the EPIC project.

Why do you think it is important to study epistemic injustice in healthcare?

Being ill tends to increase our dependence on others, not only family members and healthcare practitioners, but also on, for example, friends, colleagues, and teachers. Over a remarkably short and fruitful period, scholars working on epistemic injustice in healthcare have provided rich insights into how people with ill health can be silenced in the relationships that arise and change through illness. This work has been and continues to be vital to empowering patients and improving healthcare.

However, a worry I have with the growing scholarship on epistemic injustice, in general, is that silence tends to feature in it only as a socially imposed harm and, accordingly, something that should be broken. Such a narrow understanding of silence overlooks the range of meanings and functions of silence for people with ill health, some of which may be restorative or empowering. And, by acting on it carelessly, we risk compounding the epistemic and other harms that such people face.

To realise the practical potential of epistemic injustice as a concept for patients and healthcare practitioners and to ameliorate the harms that this concept highlights, we need a better understanding of silence in ill health and its relationship to epistemic injustice. This is what I will aim to provide in my case study by examining how people with bipolar disorder – who may have a unique and conflicted relationship to silence and speech – experience and use silence in their lives.

What are you working on right now?

I’m working on a series of papers that will inform the conceptual framework of my case study. The first sets out an epistemic case for recognising a substantive political right to silence.

American crime shows might mislead us into thinking that this right is already legally protected. The phrase ‘You have the right to remain silent’ is probably among the most famous in the English language. In the UK – where what we do not say can be used against us in court – we do not have that right. However, even if we did, a right to remain silent in criminal contexts is too circumscribed to provide the protection that we need for our silence in a democracy.

A political right to silence must be able to protect our ability to be silent across various contexts because there are often good epistemic reasons for us not to speak. For example, we might feel pressured to lie if we speak, or we might know that what we say will be misunderstood or misused by others. In such circumstances, silence might be the best option. But, in a society like ours where silence is frequently denigrated, it may seem an untenable one.

I think this right could have important implications for people with ill health, who can, for example, be subject to pressure to disclose their illness at their place of work or education.

I’m looking forward to developing this and other ideas over the next few years in the context of the EPIC project.

Self-narratives and medicalization: the effects of psychiatric diagnoses

This post is by Richard Hassall, a qualified clinical psychologist, now retired. After retirement, Richard enrolled at the University of Sheffield to do an MA in philosophy, followed by a PhD which was completed in 2022. At the time of writing, Richard is an affiliate researcher attached to the Department of Philosophy at Sheffield.

Richard Hassall

My area of interest is philosophy of psychiatry, with a particular interest in the nature of psychiatric diagnostic categories and the effect these have on the individuals who receive them. I argue in my PhD thesis that a psychiatric diagnosis may, in some cases, lead the recipient to becoming a victim of epistemic injustice, and specifically of hermeneutical injustice. I argue that this effect can be understood in terms of narrative theory and the self-narratives that individuals construct for themselves.

People gain meaning in their lives through their self-narratives, but such narratives can be changed by the person’s social circumstances and by extraneous events. Receiving a psychiatric diagnosis is one such event in some people’s lives, and it can significantly impact on the recipient’s self-narrative.

The codification of psychiatric diagnoses in disease nosologies, such as the DSM-5 of the American Psychiatric Association, can convey the implication that these represent disease entities of some sort. Patients are often told that their condition is “an illness like any other”. The reductionist methodology characteristic of the biomedical model of diseases can suggest that mental disorders are somehow caused by neurochemical abnormalities in the brain, an idea reinforced by the frequent treatment of such disorders with medication. Consequently, the diagnosis may be understood as a medicalized explanation of the person’s difficulties. However, most such diagnoses are based purely on symptom descriptions and do not explain how the person’s symptoms arose.

The medicalization implicit in psychiatric diagnoses conveys a biomedical narrative which may conflict with or marginalise the recipients’ previous self-narratives at a time when they will be experiencing significant emotional distress. As such, the recipients’ own hermeneutical resources can become marginalised. In other words, their capacity for understanding and expressing their own experiences can be minimised or neglected by clinicians. This can result in them becoming victims of hermeneutical injustice, particularly if they are mistakenly led to believe that their condition is a chronic one, from which full recovery is unlikely to happen.

The biomedical narrative associated with such diagnoses can undermine the recipients’ beliefs about their sense of agency and lead to feelings of hopelessness about recovery. While it is not an inevitable consequence of such diagnoses, there is evidence from testimonies of former service-users that this can happen to some people.

Kathleen Murphy-Hollies joins EPIC

On 1st September 2023, Kathleen Murphy-Hollies will join EPIC as a Research Fellow based in the Philosophy Department at the University of Birmingham. We asked her a few questions to get to know her better.

Kathleen Murphy-Hollies

Hi Kathleen! What are your main research interests?

Hello! My PhD project looks at the impact of self-concepts and self-narratives on our behaviour, and in particular, our ability to embody moral virtues. In confabulation, for example, we assign certain motivations and ascriptions to ourselves which aren’t accurate. 

Confabulations may misconstrue the details of the circumstances and not capture what really drove our behaviour. But despite this, flawed self-ascriptions can drive future behaviour to be in-line with the ascribed motivations, thus improving behaviour and making those idealistic self-ascriptions true over time.

So in general, I’m interested in labelling effects and how perceiving ourselves in a certain way affects how we are. I see this as a very dynamic and social phenomenon, in which we negotiate our self-concepts with others by drawing on their feedback and insights into the nature of our own behaviour. I see these processes also as a perfectly legitimate route to developing virtue and maturing ethical behaviour.

Positive self-concept

Why do you think it is important to study epistemic injustice in healthcare?

In my research, I place a lot of emphasis on the input of the people around us on the formation of our own identities. I think that these social negotiations can go better or worse and that it’s important to get them right. In healthcare interactions, these negotiations with others to attempt to better understand ourselves take place overtly, which also makes explicit how important it is to get right. 

Not giving due credit and weight to the inner experiences and desires of an agent who seeks to understand their behaviour better – the patient, in these cases – is one way in which these negotiations seriously fail to be fruitful. It also, of course, greatly harms the patient and damages the relationship that they have with their healthcare provider, who has a lot of power in this exchange. 

It is important to tackle structural barriers such as belonging to a marginalised social group, which stops people being truly heard when recounting experiences which may be confusing and painful. Addressing these problems will safeguard patient wellbeing and enhance the quality of healthcare.  

What are you working on right now?

At the moment, I am writing about how claims about conspiracy theories may be driven by a desire to express and demonstrate certain treasured self-concepts, rather than by attempts to have accurate explanations of the world. This explains some findings about adoption of conspiracy theories and their bizarre features. 

The social negotiations in this context are set very broadly, across entire cultures, and I’m starting to look at closer, more intimate relationships. In these kinds of relationships, each member has particularly powerful influence on shaping the identity of the other. I hope that this will highlight useful and important dynamics to be aware of in the patient-provider relationship, in order to avoid epistemic injustice there.  

Epistemic injustice in the therapeutic relationship in psychiatry

Today’s post is by Eisuke Sakakibara, who is currently a lecturer at the University of Tokyo Hospital. He is a clinical psychiatrist as well as a researcher in the field of philosophy of psychiatry. Since 2013, he has been leading a study group in Tokyo, aptly named Philosophy of Psychiatry and Psychology. 

His recent publication, “Epistemic injustice in the therapeutic relationship in psychiatry,” published in Theoretical Medicine and Bioethics, discusses the effects of epistemic injustice on the interactions between psychiatrists and their patients.

I first heard of the concept of epistemic injustice in 2019 in San Francisco. From that moment on, I intuitively knew that it is a concept suitable to highlight practical and ethical issues of communication that arise between psychiatrists and psychiatric patients. I have decided to further my research.

The psychiatrist-psychiatric patient relationship is a type of doctor-patient relationship, and furthermore, the doctor-patient relationship is a type of professional-client relationship. I have made a distinction between problems that arise specifically between psychiatrists and psychiatric patients, problems that arise within the broader doctor-patient relationship, and problems that can arise generally in the professional-client relationship. Although there are no clear boundaries to what is called professional work, in addition to the classic three professions of physician, lawyer, and clergy, one could add psychologist, pharmacist, accountant, etc. to the list of professionals.

Professionals’ work involves helping clients solve problems through paid consultation. This problem-solving process requires an “epistemic collaboration,” a shared understanding and exploration of the problem, between the professional and the client. However, a professional’s high level of expertise and their close-knit relationships with peers can sometimes hinder this collaborative process. They might unintentionally dismiss certain issues important to the client as irrelevant from a professional perspective.

Eisuke Sakakibara

The doctor-patient relationship is unique among professional-client relationships in that it seeks to solve the client's bodily problems. Thus, the client experiences the duality of being both the problem solver and the problem itself—both informant and source of information. This is where the epistemic injustice inherent in medicine can arise, since in today’s medicine, objective findings from the patient's body, such as CT scans and blood tests, tend to be more prioritized than the patient’s verbal complaints.

Finally, psychiatry deals with illnesses that may impair the patient’s rational capacities, which further creates additional difficulties in epistemic collaboration. If a patient is delusional, the psychiatrist may have to accept the patient’s utterances not as testimonials, but as sources of information that reflect the patient’s illness.

The paper identifies a variety of epistemic injustice that occurs between psychiatrist-psychiatric patients from these three perspectives and proposes possible remedies.

Should epistemic injustice matter to psychiatrists?

This post is by Eleanor Harris, Lucienne Spencer, and EPIC project investigator Ian James Kidd. Harris is a M4C funded doctoral researcher at the University of Birmingham, working on epistemic injustice and epistemic vigilance. Spencer is a postdoctoral researcher working on the Wellcome Trust-funded project ‘Renewing Phenomenological Psychopathology’ at the Institute of Mental Health, University of Birmingham. Kidd is a lecturer in philosophy at the university of Nottingham and works on epistemology, philosophy of illness and healthcare. 

Eleanor Harris

Does epistemic injustice matter in psychiatric contexts? Brent Kious and colleagues have recently argued ‘No’ (see paper in Psychological Medicine). While it is welcome to have our assumptions challenged, we think the answer should still be that epistemic injustice should matter to psychiatrists. (See our full response in Philosophy of Medicine).

Before addressing whether epistemic injustice is applicable to psychiatry, it’s important to briefly clarify what “epistemic injustice” is. Epistemic injustice is a broad and heterogenous category of wrongs. Very generally, epistemic injustices are those which harm someone in their capacity as a knower (as an epistemic agent). With this notion in place, we can focus on epistemic injustice in psychiatry.

Lucienne Spencer

When disputing the need for epistemic injustice, one has to have a good understanding of what it is. Our first worry is that Kious and colleagues have an overly-narrow conception of epistemic injustice as ‘unfairly discriminating against a person with respect to their ability to know things’. While this captures some important kinds of epistemic injustice, it does not include others, such as those involving the unfair and harmful distribution of epistemic goods (like credibility). Given the varieties of epistemic injustice, claims about whether or not it matters in a given context should be sensitive to the richness and diversity of the concept.

Secondly, Kious and colleagues dispute the prevalence of epistemic injustice, which we think overlooks the abundance of evidence for its enduring and widespread presence in psychiatry. Many patient testimonies report negative epistemic experiences – such as the feeling of not being listened to – which are interpretable as epistemic injustices. Indeed, such reports are common almost to the point of cliché. 

A related claim by Kious and colleagues is that even if there are a few localised instances of epistemic injustice, the psychiatric profession has existing tools and clinical standards to deal with these cases. However, this is unpersuasive, given that epistemic injustices are still being reported despite these tools and standards. Moreover, we worry that those tools and standards themselves could perpetuate epistemic injustices. Some apparent solutions might actually be part of the problem, and this is precisely the point raised by so many critical writers in the philosophy of psychiatry, mad studies, and elsewhere.

Ian Kidd

Kious, Lewis and Kim end their paper with a worry that the concept of epistemic injustice might encourage some psychiatrists to ‘act as though we believe everything patients tell us’. Even worse, patients might come to expect ‘uniform acceptance of their ideas about diagnosis and treatment’. We agree that neither of these outcomes is desirable, but we also think that no epistemic injustice scholar would endorse such exaggerated policies of epistemic credulity and acceptance. Uncritical acceptance of all testimony is not epistemic justice.

We think that epistemic justice does need appreciation of psychiatrists’ epistemic power, the intrinsic and contingent obstacles to interpersonal understanding in cases of psychiatric illness, and the serious consequences of epistemic injustice in this domain. The conceptual resources offered by epistemic injustice studies are vital for making progress in that direction.