Showing posts with label lived experience. Show all posts
Showing posts with label lived experience. Show all posts

Wednesday, 9 September 2026

Epistemic Injustice and Audit Culture

People categorised with SMI (serious mental illness) are invited for annual physical health checks. In this post taken from her own experience, Becca Pyne reflects on measurement harms and conversational silences.

Not 30 minutes ago I was in a rape counselling session online. Today we finished ten minutes early for data extraction, sorry, collection. The charity’s impact measurement strategy determines my mandatory participation, its purpose being performance statistics for funders. I know this because it has been explained to me. 

Along with the unspoken acknowledgement that the survey essentially has no other function and “so we just need to get through it”. I make a mental note that it's the first time I have been asked to score from 1-10 how homicidal I’m feeling. I’m now at my GP’s office and I’m sat with the nurse for the first part of my annual physical health check. And for the second time in 30mins I am required to score myself from 1-10 on the likelihood of my intent to commit suicide.

I’m distressed and highly activated. I inform the nurse where I have just been. She says nothing. At first I think perhaps she doesn’t hear me. So I repeat myself, apologising for troubling her with my distress. And again I state that I have just come from a rape counselling session. But she continues not to hear me.

And in that moment I want the ground to open and swallow me up. I both want to die and think I that already am, the shame comes so thick and fast. My paranoia is activated and I believe that she hates me. That I’m disgusting. ‘Who do I think I am, how dare I be so inappropriate’ is swirling round my head. I have been triggered into such a state of trauma that I’m not sure I will make it through the appointment.

Then she starts talking. Asks me if I’m working? I manage to get out the words that I’m studying a MA. She asks me what I’m studying and tells me she studied for her Masters, whilst working full time. I feel even more pathetic as I can barely cope and mine is only part time. Now, I’m even more confused. I feel really disorientated. Did she mishear me? I conclude that whatever just happened, that it must be all my fault.

It was only months later that I began to get a grip what had happened. I was so affected by this incident it took me a long time to make sense of it. In essence, this nurse was only prepared to carry out the procedural requirements of my health check. She refused to acknowledge or meet me in my vulnerability and instead focused on the employment and education section of the health check form and she employed silence to control and reinforce that agenda.

New public management theory encompasses principles from economics, business and organisational theory and applies them to the healthcare sector. This creates an audit culture shaped by the modern techniques and values of financial audit. These then become the governing principles of human conduct. Justified as interventions of efficiency, transparency and greater accountability, they displace informal relations of trust. 

The result is dehumanisation - between members of staff and between staff and patients. Calculative practices such as performance indicators and benchmarking are structural impediments to linguistic exchanges, as the fetishisation of data collection takes precedence over staff-patient interactions. Indeed, I cannot count the number of times I have been faced with someone who doesn’t even look at me, so focused are they on the task of recording my data that they forget I am an actual person.

The medical encounter by its very nature is made up of an imbalance in power and authority. Frequently, vulnerable disclosures are met with silence and emotional withdrawal which result in felt shame. Unequal power relations are a key feature of the terrain of epistemic injustice as dominant groups often employ silencing practices to preserve epistemic control.

Data collection causes epistemic harm. Even though I am sympathetic to the charity’s funding plight I overwhelmingly experience rage and powerlessness at what feels like another violation or transgression - being forced to acquiesce to more misrepresentations of my self and experience. The scale is overly complicated and there is no ‘measure’ I can relate to in these questions. It is distressing and there is no opt out. The same is true of the NHS. Nobody cares what my answer is, just that I do it. And once again the measure becomes the goal.


Further reading:

Cris Shore and Susan Wright, ‘Performance management and the audited self’, In Brihaj Ajana, ed., Metric Culture: Ontologies of Self-Tracking Practices, Bingley: Emerald Publishing Limited, 2018, pp. 11-36.

Cris Shore, ‘Audit Culture and Illiberal Governance: Universities and the Politics of Accountability’, Anthropological Theory 8, 2008, 278-298.

Kristie Dotson, ‘Tracking Epistemic Violence, Tracking Practices of Silencing’, Hypatia, 26(2), 2011, 236–57.


Becca Pyne is a PhD candidate in sociology based in the Centre for Cultures and Environments of Health at the University of Exeter. Her research focuses on the lived experience of chronic shame and agency within patient-centred healthcare, which includes relational and interpersonal interactions between patient and healthcare workers in addition to the objectifying effects of evaluation and measurement practices.




Wednesday, 20 May 2026

When symptoms are silenced: Understanding epistemic injustice in women’s healthcare

In this post, Shame and Medicine’s Farina Kokab explores the epistemic dimensions of her work on women’s reproductive health.

Image credit: Wellcome Collection

Across healthcare systems, women prepare themselves for consultations knowing that the burden of proof often rests on them. Experiences of dismissal are not isolated incidents but reflect a long-standing pattern in which women’s symptoms are questioned, reframed, or minimised. This pattern cuts across chronic pain, reproductive health, and autoimmune conditions, and is intensified for women from marginalised ethnic and socioeconomic backgrounds. What appears, on the surface, to be a communication gap is better understood as a form of epistemic injustice embedded within medical training, clinical cultures, and organisational structures.

Dismissal rarely appears as an outright refusal to believe a patient. It often manifests in subtle behaviours that cumulatively undermine credibility: the shift in tone, the sigh, the avoidance of eye contact, the referral that leads nowhere, or the decade-long delay in diagnosing endometriosis. These are all moments through which women begin to question their own interpretations of their bodies. Within biomedical frameworks that privilege measurable evidence, women’s complex, fluctuating, and often invisible symptoms are easily reattributed to mood, stress, or hormones. Such explanations position the problems within the woman rather than within the condition, leaving her responsible for both her suffering and the failure to resolve it.

This dynamic is particularly stark in reproductive healthcare. After childbirth, women managing tears, surgeries, and complications are frequently sent home with minimal support, relying on limited resources, and the expectation that over-the-counter analgesia will suffice. Requests for help may be interpreted as exaggeration or dependency, reinforcing long-standing assumptions about feminine emotionality. In these contexts, women learn that speaking up carries risk: the risk of being labelled difficult, anxious, or attention-seeking. Silence, then, becomes a strategy for self-preservation, even as it delays or obstructs care.

Epistemic injustice offers a useful lens for understanding these experiences. Testimonial injustices occur when women’s accounts are given reduced credibility because of gendered assumptions about reliability, exaggeration, or emotional instability. Hermeneutical injustice appears when women lack the shared social or clinical language to articulate phenomena such as birth trauma, reproductive coercion, or chronic fatigue. Without interpretive frameworks that recognise these experiences, women struggle to make themselves intelligible within clinical encounters, and clinicians struggle to interpret their narratives in ways that guide action. Dismissal, in this sense, is not merely a failure of empathy but an epistemic harm with direct clinical consequences.

Structural conditions further shape these encounters. Time-pressured appointments encourage heuristic thinking, and organisational incentives prioritise throughput over deliberative listening. Clinicians often face their own emotional burdens when they cannot offer solutions, especially to patients who repeatedly seek reassurance or validation. Intersectionality compounds these challenges: women who are racialised, working class, migrants, or young are more likely to be stereotyped and thus more vulnerable to epistemic exclusion and exhaustion.

Women respond to these credibility deficits with considerable efforts. They rehearse their accounts before appointments, bring advocates to support their claims, modify the way they describe pain, conduct their own research, or seek alternative providers. These adaptive strategies illuminate the labour required simply to be heard and highlight the structural gaps within the system. They show that credibility must be worked for, rather than assumed, and that women often navigate healthcare environments that are neither receptive nor prepared for their stories.

Improving these dynamics requires more than individual goodwill. Listening must be treated as a clinical skill, central to diagnosis and care planning. Women’s interpretations of their own bodies should be given meaningful space, especially in contexts of diagnostic uncertainty. Organisational cultures that support curiosity, collaborative reasoning, and shared decision-making can reduce the epistemic burden placed on patients. Emerging work by female clinicians and advocacy groups demonstrates that alternative models are possible.

Ultimately, attending to epistemic justice is not just optional; it is necessary for safe and equitable care. Recognising women as credible knowers of their own bodies is a foundational step towards transforming healthcare encounters from sites of dismissal into spaces of understanding.

References:

Fricker, M (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press

Werner, A., & Malterud, K. (2003). “It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors” Social Science & Medicine, 57(8), 1409-1419

Hoffman, D.E., & Tarzian, A.J. (2001). “The girl who cried pain: a bias against women in the treatment of pain” Journal of Law, Medicine & Ethics, 29(1), 13-27


Farina Kokab

Farina is an experienced Qualitative Researcher with an interest in theoretical and conceptual framing of health inequalities, specifically women’s reproductive health. Her background in Psychology and Social Research enable her to undertake inter-disciplinary research and teaching. She is currently working as a Research Fellow on the Wellcome-Funded project, Shame and Medicine.

Wednesday, 8 October 2025

The Importance of Kindness – and some great tunes

Today's post comes from EPIC's Jude Williams and it shares the experiences of members of the Choir with No Name on finding a community where they could be heard and understood.


A black and white photo of the choir singing at the front of a church beneath stain glass windows
The Choir With No Name Birmingham, Summer Spectacular 2025
St Martin’s in the Bullring, Birmingham, 19th June 2025


I’ve had the privilege of being part of the Choir with No Name Birmingham as a volunteer since 2017. And despite a couple of long absences due to health problems, I’m always welcomed back with open arms. And that’s the thing about this choir. It’s a weekly welcoming hug, for people affected by homelessness and marginalisation. Everyone is held and supported by the love and efficiency of Choir Manager Sally, the musical genius of Choir Director Pete, and a group of volunteers who cook a hot dinner for 50 and provide a friendly face and a listening ear for those who need it. 

Our members are all ages and from all walks of life, and together we raise the roof of St Martin’s Church in the Bullring, in joyous 4-part harmony. Our gigs range from homeless shelters to tv award ceremonies to recording with pop stars. If HS2 ever does get built, we’ll be the sound of the new Birmingham Curson St station clock. And although it’s the singing that we all adore, the camaraderie and the feeling of belonging, it’s the effect that choir has on individuals, in a safe place where their voices are heard, which is the most profoundly moving aspect. This choir changes lives, with a good dose of belted-out bangers along the way.

Our members have arrived at choir after years of trauma - homelessness, addiction, domestic abuse, to name but a few. Many have had countless experiences of epistemic injustice - they are resigned to not being listened to. And yet at choir, a safe non-judgmental space, members come back week after week, gaining in confidence and voice.


A man in a baseball cap and glasses sings passionately into the microphone, while the choir (blurred) sings behind him
Gabriel, Bass brings the house down with his ‘Earth Song’ solo All Together Now


Jenny, our youngest member, joined choir nearly 2 years ago, at age 18. Living with autism and anxiety, Jenny had to leave home quickly, 2 days after her 18th birthday, moving into a flat which she sat in, alone, for 6 months. 

“When I came the first time I was really anxious but I got to like it and then love it. You can always speak to people so I got really close with Sally and it’s nice that I can sit with her and have a sing. She checks in midweek which I find quite helpful, especially when I’m having a tough week, I know she’s thinking of me. I don’t think people understand how much autism and anxiety can affect someone, especially when something in the past has happened. People might think it stays in the past, but it doesn’t, it’s like a luggage tag that you keep with you, so I find it hard some weeks cos it can just pop up out of the blue.”

It wasn’t long before Jenny was holding a mike on stage and singing solos. She’s in charge of the ‘clicker’ too, moving the screen on in rehearsal as we learn the songs off by heart. “Singing is very important in my daily routine. There’s always music on through my headphones..to try to control the background, to help with my anxiety.”

Jenny struggles with seeing healthcare professionals as she doesn’t believe they always take her needs into account. 

“I used to go to the doctors a lot when I was living with my Dad, because of my mental health, but I feel like, they didn’t really do much. They’d say ‘it’s just the situation that you’re in’, but there was more to it. I used to be referred to family services and stuff and I feel like they didn’t really understand it either, I feel like they were oblivious to it all, they misunderstood the whole situation. They let me down. Even things like a simple blood test, which could be quite easy for you. The minute I walk in that room I’m nervous and I feel like the nurses don’t take into consideration that I’m autistic. I don’t even think they read the notes, they just call you in and expect you to get on with it, and it’s not that simple.”

 

Portrait of Talvin in a  chic, purple Louis Vuitton scarf, black Letterman jacket and wide-brimmed hat
Talvin, Tenor at choir rehearsal, Spring 2025

Talvin, a gentle but vivacious singer-songwriter in his 30s, spoke to me about his experiences. Having coped with homelessness and mental health issues, he found the choir through SIFA Fireside, a Birmingham organisation offering homeless support services. 

“It was everything that I was told it was – welcoming, loving, communal, entertaining, dynamic - right up my street music wise. It helped me to elevate back to a stronger place because there were other people I got to interact with that could understand my brokenness and understand my position. Everybody from the choir has come from the streets, from brokenness, from broken marriages and they just needed time away. When I first came to choir, I saw all the mixture of people and I felt at home. The warmth, the singing, the love and eating together and I look forward to every Thursday. No matter what is going on, I feel like I’m coming to see family.”

Talvin has had good experiences with healthcare professionals, feeling lucky that he’s been aware that there is help out there. 

“For me to navigate my mental health through my traumas, I needed help and therapy has helped me a lot. I’ve had to wait a few years, but I’ve had it. Others I know have had problems with reaching a level of understanding with people who are supposed to be helping them from the mental health sector. Either just been given tablets or just not getting them and listening to them. I must say, I feel I’ve been spoiled that way, I’m getting emotional about that, because I know that’s not everyone’s experience. I love people who want to give back and I wasn’t aware that groups, like the choir existed. Had I known these groups were about, I feel that I’d have had more stability because what I’m seeking, needing, to help soothe my overwhelming mental moments, is based in these places.”

Women of the choir singing passionately
The Sopranos and Altos singing their hearts out


Each week we get to sing and laugh together, and there is an implicit understanding that as individuals, we are exactly who we are, and that’s ok. As Talvin so eloquently puts it: 

“There is such a dynamic of people here, and when we communicate and how we engage, we all somehow take that into consideration. Without even saying it. There is that understanding. It’s so unwritten, no one says anything, everyone just acts accordingly. Every week, it shows you what the world is but it comes with such an acceptance. I’ve seen people who are not necessarily getting up to sing, but they just need to be here, just need to be around something, and this ‘something’ is here. Sally’s love and sternness and keeping things together, but with all love. And Pete’s discipline in keeping the structure of our music is like a very silent hug. All of you, everyone is just amazing.”

It's humbling and a real privilege to be part of the Choir With No Name. We are a family and we hold each other up, quite literally as we hug and clap each other on the back in the middle of performances. It’s a simple idea – to sing and eat together – but it’s those simple acts, with kindness and acceptance that make such a profound difference to people’s lives. As Jenny says: 

“You might not understand autism but the thing is, you’re all very friendly and I know I can approach you, I can talk to you. Kindness is important. It’s not about being able to read the person inside out, it’s about being very understanding and kind. You don’t expect everyone to understand but everyone can be kind, kindness is a choice.”

And Talvin’s mental health has hugely improved since attending choir. 

“That consistency of coming week after week has really helped me. I know I have a place on a Thursday and it’s guaranteed, I can come. I can join in with the meal at moments when I can’t do that with my own family or any close people, and I’m yearning for it. There’s so much that pulls me back here and gives me that consistency.”

Our 2024 Member’s Survey showed that 96% of members surveyed felt that being part of the choir helped to improve their mental health. 97% had reduced their stress and /or anxiety and 100% felt a greater sense of belonging, confidence, positivity and purpose. And that is shown in bucketloads at a Choir With No Name gig – it’s a joy to behold. Come and check us out. And if you can’t make it to Birmingham, there are 6 other Choirs With No Name across the UK delivering equally brilliant results.


Portrait of Jude Williams in the choir t-shirt next to a gentleman wearing a Christmas hat over his head
Jude Williams is an Alto, cooks a mean dahl for 50 and is Project Administrator for Project EPIC at the Institute of Mental Health, University of Birmingham. 


Wednesday, 26 March 2025

Special Issue: Renewing Phenomenological Psychopathology

 

The Renewing Phenomenological Psychopathology project is an International Exchange Award funded by the Wellcome Trust that acts as a catalyst for innovative and interdisciplinary in the field of phenomenological psychopathology. The project leaders are Professor Matthew Broome and Professor Giovanni Stanghellini

Through this grant, we created a network of diverse international scholars from across disciplines and career stages. This was formed through awards (including international exchange fellowships, small grants, and knowledge exchange events). The aim of the project is to revitalize phenomenological psychopathology for the 21st century as a democratic discipline with a historicised and inclusive account of the experience of mental illness.

While we had made some significant headway in disrupting this field, more work needed to be done. For this reason, we sought to create a special issue on the theme of Renewing Phenomenological Psychopathology. Through this special issue, we ask: What is the future of phenomenological psychopathology? We invited contributors to shake up previously sedimented ideas in phenomenological psychopathology and reconstruct this vital phenomenological tradition. Due to the volume of high-quality submissions, the special issue was split into two parts. 

The first part focused on how phenomenological psychopathology can be applied in new ways to gain a deeper understanding of specific psychiatric conditions. One of the core achievements attributed to phenomenological psychopathology has been a richer understanding of an array of psychiatric experiences that had previously been limited to biological accounts. However, not only has our understanding of these conditions drastically transformed since the conception of phenomenological psychopathology in the early 1900s, but entirely new conditions have been recognised and defined. 

Section one of the special issue explores the following mental health conditions (or neurodiversities): Schizophrenia, Depression, Autism and Post-Traumatic Stress Disorder. The papers in the first section either challenge hitherto engrained ideas attached to a given condition or apply phenomenological psychopathology to conditions that have been overlooked by the discipline thus far. 

The second section of the special issue strives to revitalise the very methodology of phenomenological psychopathology. Although the vestiges of phenomenology can be found across disciplines, phenomenological psychopathology has done little to engage with fields outside of philosophy and psychiatry. Advances in disciplines such as anthropology, sociology, neuroscience, critical race theory, and linguistics offer exciting new opportunities which are missed by such a guarded approach.

The second section of the special issue coalesces around three key themes. The first theme involves addressing and ameliorating inequalities in phenomenological psychopathology. The second theme involves examining the role of value and virtue in phenomenological psychopathology. The third theme focuses on fusing phenomenological psychopathology with new approaches across disciplines. 

After a long period of obscurity, phenomenological psychopathology has re-emerged. A new focus on the patient’s voice has given the approach a valued place among once more dominant methodologies. The aim of this special issue is not to sever our roots. Rather, we hope to bring all that is fruitful in the tradition of phenomenological psychopathology into the present, opening it up to new possibilities.


Dr Lucienne Spencer is a Postdoctoral Researcher in Mental Health Ethics located within the Neuroscience, Ethics and Society (NEUROSEC) Team in the Department of Psychiatry, University of Oxford. Her research primarily focuses on phenomenology, epistemic injustice and the philosophy of psychiatry.


Wednesday, 28 August 2024

The Role of Curiosity in Healthcare

Empathy, kindness, and trustworthiness are among some of the virtues commonly associated with physicians and other healthcare professionals. However, might the virtue of curiosity also have a role to play in medicine?

Lisa Bortolotti and Kathleen Murphy-Hollies (2023) offer an extensive and thoughtful treatment of how curiosity can be a virtue in healthcare, especially within the physician–patient relationship. They describe curiosity as a disposition to attain new information, with it manifesting as a moral virtue when it helps one to view others as speakers with a valuable perspective. Importantly, they argue that when curiosity is directed towards the experiences of others, it becomes a form of caring, encouraging one not to dismiss the experiences of others.

Girls being curious about botany

Curiosity in Healthcare

Curiosity may thus have a crucial role to play in healthcare, “opening us to questions and, if fortunate, knowing more deeply both patient and disease” (p. 138). It may help physicians to practice a more patient-centered care and to ensure that the perspectives and experiences of patients are not lost or dismissed even when views differ. Moreover, it may be particularly fruitful in situations where testimonial injustice is common, such as the doubting or discrediting of a patient’s pain, or the disbelieving of female reproductive symptoms.

However, it is also important for physicians to not stray into inappropriate curiosity, which can take the form of question-asking solely to satisfy the personal interest or curiosity of the physician. This inappropriate curiosity can lead to patients being subjected to intrusive questions irrelevant to their medical care, or breaches of privacy and the violation of patient confidentiality.

Barriers to Curiosity and Ways Forward

Although it may play a valuable role, several barriers may prevent or hinder the practice of curiosity in healthcare. Practically, the decreasing time for physician–patient encounters presents a logistical barrier—to what extent can one exercise curiosity in another’s life within the short span of 5 to 10 minutes?

Another obstacle to the cultivation of curiosity is what Martyn Evans calls the “foreseeable, unremitting, and unsung”” (p. 125). These, for a physician, may be patients with unremarkable or routine symptoms and stories that provoke little surprise. In these situations, “curiosity is dulled by familiarity”. However, even if medically unremarkable, such patients are still deserving of sustained moral attention. To combat this, , Evans proposes adopting an attitude of openness to wonder, potentially allowing a physician to see the patient in a new and extraordinary light, and thereby facilitating the exercise of curiosity.

People looking quizzical


Overconfidence and a lack of epistemic humility can also be an obstacle to curiosity, as physicians may sometimes be reluctant to acknowledge uncertainty or ignorance to their patients or peers. For this, medical education and institutions can help by emphasizing a culture of curiosity, and fostering an environment where physicians can constantly learn and adopt the perspectives of others, even post-graduation.

With these obstacles in mind, working towards the practice of curiosity in healthcare may contribute to broadening one’s perspectives and contribute to a more empathetic and well-rounded practice of medicine that includes the experiences of all.

Katherine Cheung
Katherine Cheung is a PhD student in Bioethics and Health Policy at Johns Hopkins, and previously worked as a Health Science Policy Analyst on data sharing, stationed with the NIH. Her current work focuses on bioethical issues related to psychedelics, such as the value of the psychedelic experience and the place of meaningfulness in medicine.

Wednesday, 29 May 2024

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.


Young woman feeling empowered


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


Wednesday, 17 January 2024

Epistemic Injustice: Caution and Complexity

Epistemic injustice has become a ‘hot topic’ in philosophy since the 2007 publication of Miranda Fricker’s book. Project EPIC is one product of the now-enormous field of epistemic injustice studies, which extends into other academic disciplines. This industry and interest, while welcome, brings with it the usual hazards of concepts that ‘go viral’. Over time, rich concepts are reduced to slogans or single-sentence definitions. A specific vocabulary becomes widespread but decoupled from its underlying theoretical machinery (think of Kuhn on ‘paradigm shifts’).

Academic fashions are unavoidable, as are trade-offs, such as that between the complexity and the communicability of a concept. Conceptual uptake is to be encouraged where it is productive: we should not want to lock ourselves into our specialist silos. Moreover, good work can often be done with simple versions of complicated concepts. The challenge is to use concepts, like epistemic injustice, while also maintaining sensitivity to complexity, detail, and nuance.





With that in mind, here are some problematic tendencies to note in epistemic injustice studies:

  1. the tendency to use the term ‘epistemic injustice’ in over-generalised ways to mean ‘anything epistemically bad’. Granted, epistemic injustices are heterogenous, but there are lots of epistemically bad things in the world. Not all of them are epistemic injustices. Other normative concepts and evaluative vocabularies are available, which may better fit different cases. Defaulting to epistemic injustice might obscure the normative details of certain cases. We must use the right concepts for the task at hand, not just the ones we are have become accustomed to using.
  2. a tendency to use overly simplistic accounts of the nature, causes, harms, and wrongs of epistemic injustice. Negative stereotypes, for instance, are a cause of testimonial injustice, but not the only one. Stereotype-centred accounts are sometimes right for the case at hand, but if used carelessly can disguise the many causes of epistemic injustices. Similarly, while many hermeneutical injustices fit Fricker’s original account of the lack of relevant interpretive resources, others involve the presence of distorting resources. Other cases will involve both lacks and presences of different kinds of resources. These sorts of distinctions are vital to capturing the particularity of different cases.
  3. a tendency to rely on under-articulated accounts of epistemic injustice. It is now standard to define an epistemic injustice as ‘a wrong done to someone specifically in their capacity as a knower’. However, this gloss sets up complicated questions – about the nature of the wrong, for instance, or what it means to be a knower. Sometimes, a gloss is enough, but there are many cases where the detail really matters. Many details of Fricker’s original account are not taken up, including in cases where they would help (such as the idea of ‘economies of credibility’ or her virtue-epistemological framing of testimonial justice).
  4. a tendency to default to the original 2007 Frickerian framework without considering its subsequent amendments (such as the idea of structural testimonial injustice) or criticisms of the original Frickerian account or the alternative forms of epistemic injustice (such as contributory injustice) offered by other scholars. Granted, the epistemic injustice studies scholarship is enormous, and, if the original account will do the work, that’s fine. But there is much more in epistemic injustice studies than the 2007 book.

In describing these four tendencies, I am not impugning work in epistemic injustice studies. The tendencies indicate hazards to recognise and avoid. 

Here are some others, including problems particular to studies of epistemic injustice in relation to illness and healthcare:

  • Doctor-bashing. Epistemic injustice within healthcare is a clear problem and there are important criticisms to make of healthcare systems. However, there is a temptation to put the concept in the service of ‘doctor-bashing’. Sometimes, individual healthcare practitioners are at fault. Even where they are, though, there can be complex causes, many involving major structural problems of healthcare systems like the NHS. Rushing to ‘bash’ individuals risks obscuring the messy personal, interpersonal, and institutional realities of healthcare practice.
  • ‘Grab-bag’ approaches. Epistemic injustice as a concept clearly resonates with many people, who are then tempted to ‘grab’ the concept and immediately put it to work. However, using a concept properly means respecting its nuances and the constraints on its use. Contrary to some claims, epistemic injustices can, but need not, be systematic or lead to dehumanization. Over-defining a concept is one consequence of grab-bagging. This is not to say that only trained epistemologists should be allowed to use the concept. But it does mean that concepts, like tools, must be used with due care.
  • Contesting claims. Many people experience epistemic injustices in the course of their lives. As Fricker emphasises, the concept helps those people to recognise and understand these kinds of injustice. However, not everything that one calls an epistemic injustice is an epistemic injustice. One can interpret an encounter as being epistemically unjust when it is not. It is not an epistemic injustice, for instance, if a healthcare practitioner does not automatically believe the patient’s own interpretation of their symptoms. There may be epistemically good reasons for their doing so. Questioning someone’s interpretations of their experiences is not necessarily epistemically unjust. After all, interpretations can be and are appraised – as plausible or implausible, strained or sensible, and so on. Moreover, interpretation is often be a shared task, not something a person does by themselves and then reports to others. Now, contesting claims of epistemic injustice is a delicate task. However, we will need to get better at it as the concept of epistemic injustice becomes more widely used.
  • Lived experience. Epistemic injustice is often used in conjunction with the popular concept of ‘lived experience’. Unfortunately, that term is too often either undefined, underdefined, or defined in banal terms – as, say, ‘experience from the first-person perspective’. Definitional vagary is often accompanied by a tendency to draw further, very contestable epistemological claims. For instance, having ‘lived experience’ is often interpreted as a conferral of expertise. But expertise involves social roles, systems of training and accreditation, and a defined institutional context for one’s conduct. In other cases, ‘lived experience’ is asserted or implied to be something others must accept, as if being epistemic just to someone entails a generalised policy of credulous deference. Epistemic life is too complex for that. It is a matter of contexts, roles, trust and distrust, uncertainty and doubt, – of interaction, discussion, questioning, and delicately structured activities of criticism, affirmation, challenge, clarification, agreement and disagreement. We ignore all this by taking epistemic justice to involve little more than nodding along to whatever one hears.

These tendencies and challenges can all be resisted. It is perfectly possible to use the rich conceptual resources of epistemic injustice studies in ways that honour the moral and epistemic complexities of life. In the case of healthcare, such carefulness matters all the more. Much good work remains to be done – if one is careful, rigorous, and respectful of the messy complexity of our concepts and, indeed, our lives.


This post is by Ian James Kidd
Kidd is associate professor in the Department of Philosophy at the University of Nottingham and investigator in project EPIC. Kidd has a variety of research interests, including phenomenology, epistemology, feminist philosophy, and the philosophy of healthcare.