Contagion’s complexities: When persuasive theory takes priority

 In today’s post, Veronica Heney considers how skewed hermeneutical resources – in intimations of contagion around valid discussions of self-harm – can frame multiple layers of epistemic injustice.

Self-harm’s relation to culture – to society, to sociality, to cultural texts, to the arts – is most frequently framed through the theory (and ensuing fear) of contagion. From policy to public discourse and academic research, there is a recurrent fear both that seeing self-harm will lead to people beginning to self-harm, and that individuals discussing self-harm with their peers (primarily in healthcare or educational settings) will lead people to begin self-harming.

My assessment of the psychological theories and evidence behind social contagion as a broad theory is that it is not nearly as thorough or well-grounded as the theory’s popularity might lead us to believe. A much-referenced contemporary epidemiological study examined a large dataset and drew conclusions about the relative contagiousness of a wide range of phenomenon from smoking to obesity to depression to divorce to sexuality to tastes in music. This collection of research is repeatedly used to prove that social contagion exists – yet (as acknowledged by the researchers) it only evidences correlation not causation, and fails to account for any number of confounding factors.

Specific evidence on self-harm is similarly patchy. Sarah Chaney has pointed out that initial contagion research focused on the spread of self-harm in hospital wards, and often drew on small samples or used a flawed study design. Nevertheless, publications either drew unduly strong conclusions, or were cited in ways that ignored their limitations and extended their conclusions far beyond institutional healthcare settings.

Despite the flawed evidence base, literature review papers are often published stating definitively that self-harm is contagious. Even more concerningly, this supposedly well-established fact has expanded beyond the interpersonal to incorporate the realm of media and the internet, where conclusions are drawn based on general concepts in social psychology (such as script theory and disinhibition theory) and empirical research on suicide, without any acknowledgment that the state of play with regards to self-harm might be very different indeed.

First, all this epistemically weak evidence is taken very seriously, in part because it is quantitative, and therefore taken to be objective, firm fact. Almost none of this evidence involves in-depth qualitative research with people who self-harm specifically exploring experiences of contagion. As a result, the evidence about self-harm and contagion is knowledge in which people who self-harm function as an object of knowledge, but are never permitted to author knowledge. 

This is, precisely, an example of epistemic injustice. What we know – or worse, what it is taken for granted that we know, but in fact might not be true at all – is knowledge that denies and silences the insight, experience, and expertise of people who self-harm. It is striking how easy it is to disregard people who self-harm, to trust psychology, neuroscience, and other medicalised frameworks and not to question what these approaches miss.

Second, it is important to notice that while this is an epistemic failing, it is one which has very tangible consequences. An interesting pre-cursor to the now widely-discussed social-media ban for young people was the Online Safety Act, which came into effect in 2023. The act introduced an offence which prohibited the deliberate encouragement of self-harm. While the offence itself seemed to prohibit bullying or coercion, it was framed by MPs and by campaigners as a response to recommendations from the Law Commission on the ‘glorification’ of self-harm online, and to recent inquest reports from the deaths of young people who engaged with self-harm content online and later died by suicide. 

I was involved in a campaign led by my friend and colleague Courtney Buckler to encourage lawmakers to specify that the offence would apply only to ‘malicious’ content (which we agree should be prohibited). We felt cruel bullying should be distinguished from other content which might be deemed encouragement – for instance posts in which people shared positive feelings around their own self-harm, or harm minimisation resources designed to help people self-harm safely, and reduce the risk of unintentional serious injury.

The Conservative Party politicians who had proposed the law did not take our advice and we have yet to see what the consequences of this unnecessarily broad law might be. But I worry about how fears of contagion, fears of anything that frames self-harm positively, might be used against people who self-harm to limit what we can say, what we can share, and what we can know. I am frustrated that these fears are built up from so shaky an evidence base, and I am certain that to truly understand how people who self-harm may or may not be influenced by the world around them – by their friends, by social media posts, by TV shows or by anything else – we need to start by talking to them, listening to them, and placing them at the centre of the knowledge we create about self-harm. 

My new project, Re-Knowing Self-Harm, tries to do just that, drawing on a range of different creative methods to rethink the relationship between self-harm and culture. I’ll be running a lived experience reading group around social contagion, and together we’ll decide how we might do research that begins with people who self-harm, rather than leaving them on the periphery of knowledge-making about their own lives.

Further Readings

Chaney, S., 2017. Psyche on the Skin: A History of Self-harm. Reaktion Books.

Christakis, N.A. and Fowler, J.H., 2013. Social contagion theory: examining dynamic social networks and human behavior. Statistics in medicine, 32(4), pp.556-577.

Jarvi, S., Jackson, B., Swenson, L. and Crawford, H., 2013. The impact of social contagion on non-suicidal self-injury: A review of the literature. Archives of suicide research, 17(1), pp.1-19.

Whitlock, J., Purington, A. and Gershkovich, M., 2009. Media, the internet, and nonsuicidal self-injury.

Open letter on self-harm and the Online Safety Bill: A call for caution, nuance, and care - NSUN website

Veronica Heney is Assistant Professor for Medical Humanities at Durham University, and co-lead of the Narrative Practices Lab at Durham Research Platform for Medical Humanities. Her work brings together social science and literary studies methods to explore narratives and experiences of madness and mental distress. She is co-founder and Research Lead of Make Space, a user-led collective which facilitates conversations about more generous, nuanced, and caring ways to support those with experience of self-harm.

Veronica Heney

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.

Acquired Brain Injury and Epistemic Injustice

 In this post, incoming Birmingham PhD student Kate Lynch gives an overview of her research on epistemic injustice and acquired brain injury.

As I began reading the literature on epistemic injustice in healthcare during my MRes, I expected to find work addressing brain injury. Instead, I was struck by its absence. This led me to explore epistemic injustice in relation to encephalitis, through a philosophical analysis of existing empirical research.

Encephalitis is an acute inflammation of the brain, usually caused by infection or an autoimmune response. Although outcomes vary, some people continue to live with long-term cognitive, behavioural, and emotional changes following the illness. For these individuals, encephalitis results in an acquired brain injury, placing it at the intersection of illness and injury, where differing social and clinical assumptions about each category make it a particularly illuminating case.

My MRes explored experiences across both the acute and long-term stages of encephalitis, asking whether they could be understood through the framework of epistemic injustice. I began with testimonial injustice, the idea that identity prejudice can lead a person to receive less credibility than they deserve, or even to have their capacity as a knower overlooked entirely. I argued that this can help explain some of the experiences reported by encephalitis survivors. Assumptions about what it means to live with a brain injury can shape how seriously a person's testimony is taken, while neurobiological evidence is often afforded greater authority. My argument wasn’t that clinicians should rely less on biomedical evidence, but that evidence-based frameworks can sometimes leave insufficient space for survivors' experiential knowledge. When people are disempowered as knowers in this way, testimonial injustice can arise.

I then turned to hermeneutical injustice, the idea that people can be disadvantaged when they lack the shared concepts needed to understand and communicate their experiences. I found this particularly relevant beyond the acute stage of encephalitis. Once the acute stage had passed, survivors were no longer considered to 'have encephalitis' in the clinical sense. Yet there was no widely recognised concept for what it meant to live with its lasting cognitive, emotional, and behavioural consequences. As a result, many people were left without the conceptual resources needed to make sense of this new stage of their lives. Both frameworks are helpful in making sense of disempowerment and failures of self-understanding in the context of encephalitis.

My PhD will build directly on this work. While encephalitis will be an important case study, I want to extend my focus beyond encephalitis to brain injury more generally. Rather than drawing solely on existing empirical research, I hope to work directly with people living with brain injury through semi-structured interviews, using interpretative phenomenological analysis (IPA) to explore how they experience being heard, understood, and involved in their own care.

As I began thinking about the next stage of this research, I found myself reflecting on the question that first drew me to brain injury. I remain keen to explore how epistemic injustice manifests across different forms of brain injury, but I have also become increasingly interested in injury itself. Looking back at my MRes, I realised that the relative absence of brain injury from the epistemic injustice literature reflects a broader tendency within the medical humanities, where injury has often received less philosophical attention than illness.

This has become another motivation for my PhD. Alongside exploring epistemic injustice in brain injury, I hope the project will contribute to a growing conversation about the place of injury within the medical humanities. If injury raises many of the same questions about identity, testimony and lived experience as illness, what might we learn by bringing it more fully into these discussions?

Further readings:

Atkin, K., Stapley, S. and Easton, A. (2010). No one listens to me, nobody believes me: Self-management and the experience of living with encephalitis. Social Science & Medicine, 71(2), pp.386–393. https://doi.org/10.1016/j.socscimed.2010.04.011

Easton, A. (2016). Life After Encephalitis. Psychology Press.

Kidd, I. J., Spencer, L., & Carel, H. (2022). Epistemic injustice in psychiatric research and practice. Philosophical Psychology, 38(2), pp.503–531. https://doi.org/10.1080/09515089.2022.2156333

Kate Lynch is a PhD student in Philosophy at the University of Birmingham and a researcher on project EPIC. She is conducting a case study exploring how epistemic injustice manifests in brain injury contexts. Her broader research interests lie in social epistemology and the philosophy of cognitive science. 

The Asthma + Lung UK Breathing Space Garden at RHS Chelsea Flower Show 2026

This post by Kate Binnie reports on a groundbreaking approach to creating space for reflection and conversation about respiratory ill health at the Chelsea Flower Show.

In communities disproportionately affected by deprivation and respiratory ill health, the legacy of mining and heavy industry, smoking-related disease, air pollution and occupational exposures (dust, chemicals) is compounded by healthcare inequalities and the inverse care law, whereby resources are often least available in areas of greatest need. For millions of people living with chronic lung conditions, the resulting breathlessness limits everyday life, undermining physical, psychological, social, financial and spiritual wellbeing.

Yet breathlessness remains remarkably difficult to talk about. People living with lung conditions often struggle to communicate their experience, while health professionals may lack the time, confidence or psychosocial resources to treat it as more than a lungs-and-brain "problem." Miranda Fricker describes this as hermeneutical injustice: "a significant area of experience obscured from understanding owing to prejudicial flaws in shared resources for social interpretation." In other words, when something cannot be communicated, it may be rendered invisible.

This is a phenomenon that my PhD research explored. Among the 50 patients and professionals I interviewed, experiences of shared understanding — what Hutchinson has called ‘Breathing Space’ were rare and challenging for all concerned within systems of care that do not provide the space and time to explore the breathless person's social, cultural and personal history. From a critical realist perspective, my analysis indicated not only gaps in interpersonal communication and at service level (epistemic injustices in themselves), but that these gaps are generated and sustained by deeper and persistent social, cultural and material conditions – what Alderson calls ’hostile absences’.

The Asthma + Lung UK Breathing Space garden, which has just won a silver medal at RHS Chelsea Flower Show 2026, emerged as a creative response to these experiences of restriction and absence. Drawing on findings from my research into how mind-body interventions help people living with lung conditions, the garden sought to embody their antonyms: space and presence.

Designed by my partner Angus Thompson in collaboration with patients and staff at the Breathing Space lung rehabilitation centre in Rotherham — where the garden is currently being rehomed —  the garden is grounded in a simple idea:  when we create even momentary conditions of safety and calm, the body can naturally find its own way back to easier breathing.

Inspired by the Japanese concepts of ma and yohaku no bi (the beauty of empty space and time), Angus translated empirically grounded ideas from my research into a design that reframes emptiness as possibility:  a calm, green space in which space, choiceful movement, reflection and connection become possible.

For us, the design team, the most striking aspect of the Chelsea garden was the conversations it made possible with hundreds (if not thousands, as 160,000 people visited the show this year) of visitors. One of our volunteers handing out leaflets for Asthma + Lung UK reflected:

There were people living with asthma, relatives of miners, and so many from Rotherham, Sheffield and the surrounding communities. The garden seemed to create an atmosphere of trust that encouraged people, especially men, to open up and share deeply personal experiences. I honestly couldn't believe how willing people were to connect and talk.

Design features such as the oxygen cylinders supporting the Breathing Space platform, the 6:4 breathing rhythm reflected in the fencing, the carbon-capture concrete, and the calming effect of the planting acted as unexpected conversation starters. Visitors frequently responded by sharing personal and family experiences of lung disease, loss, caring, hope, meaning and recovery. Respiratory professionals were equally enthusiastic, welcoming the rare visibility afforded to their often underfunded speciality and asking when they, too, might have a Breathing Space garden at their own hospital.

This matters because hermeneutical injustice is not only a problem of individual communication and epistemic asymmetry between patients and professionals in the clinical setting, but a problem of collective understanding which limits the potential of everyone concerned with lung disease. When experiences remain difficult to articulate, societies, institutions and healthcare cultures struggle to recognise, respond or make space for them.  We were delighted that for one week at Chelsea, a carefully designed garden could become a site of shared interpretation in which conversations about breathing, breathlessness, recovery and hope could be expressed and understood in new ways.

The garden is now relocated at the Breathing Space lung rehabilitation centre in Rotherham, where many of the ideas that shaped its design emerged through conversations with patients, families and staff. The garden is now under the ownership of the local community and is beginning a new life beyond Chelsea.

Acknowledgements

The garden was funded by Project Giving Back https://www.givingback.org.uk for Asthma + Lung UK https://www.asthmaandlung.org.uk

Designed by Angus Thompson https://www.angusthompsondesign.com and built by Dan Flynn.

Sculpture by Oliver Barratt https://www.oliverbarratt.co.uk

Rotherham Breathing Space https://www.therotherhamft.nhs.uk/patients-and-visitors/our-sites/breathing-space

Author bio

Kate is an HCPC registered music therapist with 20 years’ clinical experience in palliative care, based in Oxford. In 2016, she completed an MSc in palliative care from King’s College London funded by the Samuel Sebba Scholarship.  Kate is also a qualified yoga and mindfulness teacher and works with people with chronic and life-limiting conditions and their families into bereavement. She delivers training workshops for clinicians at www.sobelleducation.org.uk, and she is a guest lecturer on the MSc in Palliative Care at KCL and on the UK’s first PG training in Psycho-spiritual care at Oxford Brookes University. After 5 years as senior research associate on the Wellcome-funded Life of Breath project, Kate is now in the final year of her part-time PhD at the Wolfson Centre for Palliative Care Research at the Hull York Medical School funded by UKRI (i3) exploring the relationship between emotion regulation and breathlessness in advanced disease. 

Ageing, Life, and Philosophy

This post by Anna Videbaek Smith reports on the proceedings of a workshop on ageing and philosophy at the University of Nottingham.

  

On the 8th of June, the University of Nottingham hosted the EPIC Project workshop, “Ageing, Life, and Philosophy.” The event featured presentations by Saloni de Souza (Bath Spa University), Nga Chun Josh Law (University of Bristol), and Victoria Cluley (University of Nottingham).

The workshop opened with Saloni de Souza’s exploration of immortality in a talk entitled “I Want to Be Forever Old?” Souza introduced Bernard Williams’ conditions for a choiceworthy life, noting that Williams does not consider immortality a choiceworthy life for anyone. Souza then distinguished between two forms of immortality: the Babylon 5 model, where death is eliminated and physical ageing stalls at one’s physiological prime, and the Struldburg model, which similarly removes death but involves continuous physiological ageing. 

With this groundwork in place, Souza challenged two assumptions: (i) that Struldburg immortality cannot offer a choiceworthy life, and (ii) that Babylon 5 immortality is clearly preferable to the Struldburg model. To address (i), Souza disputed the claim that progressive physiological ageing necessarily entails a loss of pleasures and memory, suggesting that other benefits may offset any such losses. Regarding (ii), Souza questioned whether immortality necessarily involves a loss of categorical desires. While it may be possible to develop new categorical desires or find different ways to fulfil existing ones under a Babylon 5 model, ongoing physiological ageing may complicate this process. 

To mitigate this concern, Souza noted that physiological decline need not correlate with cognitive or moral decline, and that adapting to physiological ageing may prompt shifts in our categorical desires or the way we pursue them. Finally, the talk provoked discussion about how life cycles and the concept of ‘biographical disruption’ apply to ageing more broadly.

After lunch and a walk around Nottingham’s scenic campus, Josh Law presented a chapter from his PhD thesis, “Habit in Later Life: Repetition Without Stagnation in Beauvoir’s Old Age.” Law aimed to identify the optimism in Beauvoir’s otherwise pessimistic Old Age by exploring the role of habits in later life.  As Beauvoir takes old age to involve a reduction of future possibilities, we may wonder whether authentic transcendence is even possible at this stage of life. To examine this, Law drew on Beauvoir’s notion of old age as a ‘normal abnormality’: a paradoxical mode of existence where the ‘abnormal’ becomes the governing norm of daily life. 

Using the example of the paralysed painter, August-Pierre Renoir, Law argued that habits can enable older individuals to find a new, if fragile, sense of normalcy. Importantly, this does not hold for all habits, prompting Law to distinguish between two types. Invertebrate habits can be understood as “the habit of having a habit,” reflecting withdrawal, rigidity, and stagnation. This is contrasted with what Beauvoir calls ‘the poetry of habit,’ denoting habits that are integrated into our lives, providing us with a sense of “ontological security.” Law maintained that this latter type of habit can anchor older individuals in our shared social world and enable them to engage in repetition without stagnation.

The final talk, “The Relationship between Older Age, Health Inequality, and Race: Philosophical Interpretations”, was delivered by Victoria Cluley. Building on her work with the ‘Understanding Frailty’ Project, Cluley and her co-authors explored the interaction between ethnicity and the experience of frailty in old age using an anti-racist, photovoice approach. They provided 69 participants from six ethnic groups with digital cameras, instructing them to photograph their day-to-day activities to capture their experience of growing older. This culminated in 1,126 pictures depicting everything from pets to religious practices and bouncy houses at family functions. 

Several key themes emerged, including experiences of racism, the role of purpose, and the inherent diversity of older individuals as a social group. Particularly relevant to the EPIC Project were several photos depicting healthcare settings. This prompted participants to recall experiences of testimonial injustice in healthcare contexts, which they largely attributed to their race and old age. Cluley observed that some of the more privileged Black British participants referenced structural racism to make sense of these experiences. Interestingly, the participants of Indian or Caribbean descent, who tended to come from more disadvantaged backgrounds, did not invoke this concept. Perhaps the lack of access to a concept like structural racism can itself be considered an epistemic injustice. 

More information on this project can be found here.

Author bio

Anna Videbaek Smith is a DPhil candidate in philosophy at the University of Oxford. Her research explores ageism as an intersectional form of oppression, focusing on its moral, epistemic, and aesthetic dimensions. Prior to joining Oxford, she completed an MA (Hons) and an MLitt, both in Philosophy, at the University of St Andrews.

Whose knowledge counts? Learning from epistemic injustice in global health

This post, by Michael Bresalier, reports and reflects on a recent, interdisciplinary workshop about epistemic injustice in global health.

Global health aspires to reduce inequality—but its structures can also reproduce the very inequities it seeks to solve. This paradox sat at the heart of a recent EPIC roundtable on Learning from epistemic injustice in global health. Organised and convened by Michael Bresalier, the roundtable brought together a health systems researcher, a legal scholar, a consultant physician in HIV/Sexual Health, a doctoral researcher in mental health, and a philosopher to tackle this paradox. Seye Abimbola, Himani Bhakuni, Rageshri Dhairyawan, Ian James Kidd and Linda Maqutu shared their insights on how knowledge and power shape global health, how these forces determine whose voices are heard and ignored, and ways to address epistemic injustice in healthcare systems.

Defining key terms:  ‘epistemic injustice’ and ‘global health’

To start, panellists were asked to define the two key terms under discussion. They broadly agreed that epistemic injustice involves harms done to people in their capacity as knowers. Kidd explained that people have fundamental “epistemic needs” – to understand, interpret and share knowledge – and injustice occurs when these needs are blocked by prejudice, bias, or structural exclusion. Bhakuni extended this to global health, describing systematic forms of epistemic harm that affect entire populations, particularly through credibility deficits (where local expertise is dismissed) and interpretive marginalisation (where communities lack the resources to define their own experiences). Dhairyawan characterised epistemic injustice as one of the ways in which healthcare can dehumanise individuals and groups. There was broad agreement that these injustices are not incidental but deeply embedded in healthcare systems.

Defining global health proved more difficult. Rather than settling on a single definition, panellists agreed that global health is a set of relationships structured by inequality. Abimbola offered a resonant framing of global health as a “meeting of unequals,” a relationship structured by disparities in power, resources, and authority—especially epistemic power—that shape how health problems are defined and addressed across the globe. This imbalance determines everything from which problems are prioritised to how research is conducted—and whose knowledge is seen as legitimate.

Others reinforced this relational view. Bhakuni stressed that the “global doesn’t exist without the local,” pointing out that similar power asymmetries recur at multiple scales – from international partnerships to doctor-patient interactions. Maqutu similarly pointed to “unequal epistemic authority” not only between the Global North and South but also within healthcare systems. Taken together, global health emerged as both an aspirational project of reducing health inequities and a field structured by persistent asymmetries in what knowledge is produced, valued and applied.

Colonialism and epistemic injustice

A particularly nuanced discussion focused on the relationship between colonialism and epistemic injustice. Panellists agreed that colonial histories are deeply entangled with global health but resisted reducing all epistemic injustice to colonialism alone. Abimbola described the relationship as a “Venn diagram”: overlapping but not identical. Colonialism is one important driver of epistemic injustice, he suggested, but epistemic harms can also arise from other forms of exclusion and hierarchy. At the same time, colonial legacies continue to shape whose knowledge is recognised in global health. Maqutu illustrated this through the marginalisation of Indigenous knowledge systems, such as African traditional medicine, which are often excluded in mental health provision even when they are central to patients’ health beliefs and lives.

The roundtable stressed that while global health remains historically entangled with colonising forms of power, not all epistemic injustice in global health is colonial in origin. Overextending this connection risks collapsing complex problems into a single historical frame. Instead, analyses of unjust knowledge systems in global health require multifactorial perspectives.

These complex dynamics become especially visible in practice. In a discussion of the challenges in justifying funding for a small study of intimate partner violence among HIV-positive women, Dhairyawan described how both patients and healthcare workers can experience dismissal or silencing, sometimes leading to “testimonial smothering.” Abimbola highlighted how global metrics or standards—often set by organisations like the WHO—can distort local realities when imposed without context, forcing countries to “understand themselves” through external frameworks while ignoring local health realities. Across these cases, epistemic injustice appears as a structural feature of how knowledge is produced, validated, and applied.

From inclusion to transformation

When it came to solutions, panellists agreed that responses to epistemic injustice must be context-sensitive, dialogical, and attentive to power. But individual-level changes—such as encouraging clinicians or researchers to listen more—are not enough. While individual virtues such as empathy are important, they are insufficient on their own. Structural change is essential.

Bhakuni proposed reframing epistemic harms as violations of dignity and rights, requiring institutional accountability. Maqutu argued for epistemic decolonisation: not just including marginalised voices but transforming the standards by which knowledge is judged. Abimbola cautioned that even well-meaning efforts at inclusion can fail if underlying power structures remain unchanged.

Kidd added an important caveat for those using the epistemic injustice as a universal framework. Dominant understandings of epistemic injustice often reflect moral and political frameworks rooted in Global North traditions. Scholars in the Global South have challenged this apparent universality, emphasising the need for broader, more context-sensitive interpretations. In this view, epistemic injustice should be understood not as a single fixed concept, but as a wide class of epistemic wrongs—arising from prejudice, bias, and exclusion—shaped by long, complex historical and social processes, including but not limited to colonialism.

The roundtable closed with a powerful insight. Epistemic and material harms are deeply intertwined in healthcare. Ignoring people’s knowledge not only marginalises them—it can also undermine trust, worsen health outcomes, and deepen inequalities.

While global is committed to justice and equality, it often operates through unequal knowledge systems. If it is to live up to its promise of equity, global health must come to terms with this paradox. This means grappling not only with disparities in resources, but with inequalities in knowledge itself—asking, at every level, not just what works, but whose knowledge counts.

Watch the workshop in its entirety here: https://www.youtube.com/watch?v=ITsCjkTwijk

Further reading

Seye Abimbola (2024), The Foreign Gaze: Essays on Global Health (open access), Marseille: IRD Editions.

Himani Bhakuni and Seye Abimbola (2021), “Epistemic injustice in academic global health,” The Lancet: Global Health.

Himani Bhakuni (2023), “Epistemic repair in global health: a human rights approach towards epistemic justice,” BMJ Global Health.

Rageshri Dhairyawan (2024), Unheard: The Medical Practice of Silencing, Trapeze: London.

Linda Maqutu (2025), “Challenging Philosophical Instincts and Embracing Complexity: A Commentary on Elizabeth Barnes’s Health Problems,” Philosophical Psychology.

Author bio

Michael Bresalier is Senior Lecturer in the History of Medicine at Swansea University and Special Investigator on EPIC, for which he leads a case study on the history of ’selective’ tuberculosis vaccination in Britain, 1965-2005.

Epistemic injustice, disposability, and disrespect in inquests and fitness to practise proceedings

In this post, Professor Sara Ryan discusses the epistemic problems of public engagement in legal processes intended to facilitate listening. 

Inquest and fitness to practise processes are both fundamentally designed for the public good; the former involving a coroner-led investigation into unexpected deaths and the latter, an examination into the skills, knowledge, character and health of individual health or social care professionals by their relevant regulatory body such as the General Medical Council or the Nursing Midwifery Council. My research with members of the public involved in these processes found that each at times generated avoidable secondary trauma. This finding undermines their aims to safeguard life, ensure accountability, and uphold standards and confidence.

Public members play a central role in these processes, typically motivated by preventing others from having similar experiences. Families come to these unfamiliar spaces as novices with the expectation that their stories and their personhood matter. Instead, disrespect is repeated and amplified. Entangled within both processes is ignorance and epistemic injustice as the knowledge of families is discounted by the coroner and regulatory bodies. For example, coroners may not understand the context of a young autistic person and prioritise the views of an expert witness who works within a medical deficit model, focusing on what was ‘wrong’ with the person rather than their actual life. A fracture is generated between public expectations that they will be listened to and the aims of coroners and regulatory bodies which hold the power to make key decisions about what is and is not included in hearings and how participants are treated. 

The core focus for regulatory bodies is the construction of a robust case against the registrant and ensuring relevant people in the moment are in place to perform their role as witnesses. We found families are subjected to disposability and dismissal; of their evidence in statement form and spoken word, and are consequently treated with a lack of humanity and care. The coroner seeks to answer a small set of questions in relation to the person who died, and while family wellbeing is a central consideration, this does not always translate in practice. Inquests can become overly detached and expert-dominated – a form of technocratic accountability – which means the person who died can be dehumanised and their family excluded from being fully involved in the process of finding out what happened and why.

Accountability and change are key drivers for bereaved families, yet discrediting the person who died, or family members, seems to be an accepted strand of current practices suggesting epistemic injustice can be the default mode of  these processes. Experiences could leave participants so dissatisfied or distressed they questioned the purpose of getting involved. One participant, for example, described her experience as a witness in a fitness to practise hearing more distressing than the death of her child, while another described feeling ‘rock bottom’. 

Both contexts are, in effect, contested epistemic arenas. Overt, subtle and mundane mechanisms, including inequalities around legal funding and epistemic authority, silence families, underlining their overall lack of institutional power. A lack of information, support and expectation management can generate pre-hearing feelings of frustration and foreboding. We found evidence of what Sarah Ahmed calls ‘words that get under the skin as the use of language, or wrong spelling of a name, caused distress. Forms of communication were problematic as the name of the deceased person was spelled wrong and regulatory staff were described as ‘computer people’ offering no dialogue or acknowledgement of the harm participants had experienced. 

We found little evidence of kindness and empathy. Instead, families are expected to endure patterns of micro-violences including the insensitive and adversarial actions of legal representatives and court formalities. The epistemic landscape in both contexts can be further dominated by independent experts’ epistemic privilege in relation to their professional position, regardless of what they know or understand. For example, a lack of understanding of autism, mental health issues or even the Mental Capacity Act was raised by some participants.

We conclude that coronial inquests and fitness to practise hearings, as currently constituted, are inherently unjust. Far from delivering truth or accountability for the public good, they become sites of further dehumanisation, compounding original harm through epistemic injustice, dismissal, disposability and micro-violences. These processes will continue to generate avoidable secondary trauma until systemic reform centres respect, kindness, empathy, and genuine care instead of procedural ends.

Ahmed, S., 2021. Complaint!, Duke University Press.

Ryan S, Ribenfors F, Mikulak M, Coles D. Between epistemic injustice and therapeutic jurisprudence: Coronial processes involving families of autistic people, people with learning disabilities and/or mental ill health. Sociol Health Illn. 2025 Feb;47(2):e13855. https://doi.org/10.1111/1467-9566.13855. 

Sara Ryan is a Professor of Social Care, Manchester Metropolitan University, and her research focuses on the lives and deaths of people with learning disabilities and autistic people. 

EPIC Seminar: Expertise, Lived Experience and Legal Processes

 Sheelagh McGuinness reports from an EPIC seminar in February 2026.

In February 2026 EPIC hosted the first in a series of seminars examining the relationship between legal processes and epistemic injustice. The event brought together researchers from philosophy, law, and social science to consider how legal and regulatory frameworks can exacerbate or ameliorate the epistemic marginalisation of those who engage with them.

Professor Lisa Bortolotti (EPIC/University of Birmingham) opened with a conceptual analysis of expertise and its relationship to epistemic injustice, arguing that expertise should be understood both in terms of the knowledge an individual possesses and as a form of performance in a particular environmental context. An agent may hold relevant expertise yet be unable to exercise it if the conditions necessary for effective performance are not in place. Examples include not being invited to contribute, if space constrains or excludes their perspective, or if their testimony is challenged or reframed without genuine engagement.

Bortolotti paid particular attention to experts by experience, focusing on people with lived experience of mental health services participating in healthcare research. She identified three stages at which such expertise may be obstructed: exclusion from participation entirely; inclusion on terms that do not permit meaningful contribution; and formal inclusion accompanied by insufficient uptake of testimony. Each stage, she argued, can be understood through existing concepts in the epistemic injustice literature, including participatory injustice and testimonial injustice.

You can read more about this research here.

Dr Lucy Series (University of Bristol) introduced the labyrinthine world of mental health and mental capacity law, offering an account of how lived experience has (or has not) shaped these frameworks in England and Wales. Series’ presentation began by outlining the commonly accepted distinction of mental health law as a coercive instrument and mental capacity law as a more benign mechanism for substitute decision‑making in a person’s best interests. She proceeded to detail the ways in which this distinction is inaccurate. In particular, she highlighted how the 2005 Mental Capacity Act can in practice authorise detention and involuntary treatment and often with fewer procedural safeguards than those available under the 1983 Mental Health Act.

Series traced the involvement of disabled people and mental health service users in shaping these legal frameworks over several decades. She concluded by considering the relationship between legal complexity and genuine participation. Where legal frameworks are highly technical and their implications difficult to foresee, consultation processes that do not invest in participant understanding risk generating outcomes that diverge sharply from what advocates intended. She closed by asking what structural conditions are necessary for expertise by experience to be genuinely incorporated into legal and regulatory processes.

The final presentation applied the conceptual frameworks outlined in earlier presentations to empirical research on bereaved families' experiences of two distinct legal processes: coroner's inquests and fitness to practise hearings. Professor Sara Ryan (Manchester Metropolitan University) presented findings from research with family members who had engaged with these processes following healthcare-related harm, including the deaths of relatives with learning disabilities or autism. You can read more about this research here.

Families reported entering these processes as relative novices, surrounded by professionals whose familiarity with procedural norms gave them significant epistemic advantage. Families were expected to provide instruction without understanding what that meant procedurally, leading to a form of disconnection that Ryan characterised as epistemic marginalisation. The fitness to practise hearings produced comparable difficulties including:

• witness statements were altered or reduced in scope without notification
• charges were revised between referral and hearing
• participants who had prepared to give evidence were informed at very short notice that their testimony was no longer required.

Some participants stated that they would not make a referral again and one described the fitness to practise process as more distressing than the bereavement itself.

Ryan concluded by emphasising how modest reforms, for example, clearer communication, named contacts, and acknowledgement of the person who died as an individual have the potential to meaningfully ameliorate epistemics injustices.

The event offered compelling insights into how epistemic injustice operates across healthcare, law, and regulatory practice. A consistent pattern emerged across all three contexts (through the obstruction of expertise by experience in clinical settings, the failure of legal frameworks to meaningfully incorporate the perspectives of those they affect, and the systematic marginalisation of bereaved families in coronial and fitness to practise processes). The people with the biggest stake in these processes are routinely denied the epistemic standing to influence them. Addressing this requires not only conceptual clarity about what epistemic justice demands but also sustained attention to the structural and institutional conditions that make genuine participation possible.

Sheelagh McGuinness

Sheelagh McGuinness is professor of law at the Centre for Health Law and Society, University of Bristol. Her research interests include the regulation of reproduction, and health law more generally. Sheelagh is currently a co-investigator on two projects: Epistemic injustice in healthcare funded by the Wellcome Trust and Reproductive Borders and Bordering Reproduction (RBBR): Access to Care for Women from Ethnic Minority and Migrant Groups funded by the AHRC. Sheelagh is a member of the Board of Trustees of the British Pregnancy Advisory Board (BPAS). 

The Role of Silence and Music in Philosophy

On 16 March 2026, members of the EPIC team were joined by researchers, musicians, and members of the public for an evening of philosophical contemplation, music, and meaningful silence. The event, held at St George’s, Bristol, invited guests to consider what role silence plays in music, philosophy, and everyday life. Opening the event, music therapist and NIHR doctoral student (Hull York Medical School), Kate Binnie, led guests in a moment of collective silence, prompting reflections on how silence can create space for self-knowledge as well as support deeper social connections.

Echoing these ideas, in particular the therapeutic, and sometimes necessary, role of silence both individually and interpersonally, philosopher and EPIC research fellow, Dr Dan Degerman, provided an opportunity to consider the implications of ‘breaking’ silences, particularly in the context of mental health. Degerman emphasised that, while in many cases creating opportunities for discussion around experiences of mental illness can help reduce stigma, these discourses also risk framing silence as inherently harmful or negative. 

To remedy this, Degerman proposed ways of disambiguating different types of silence, introducing two key concepts, namely, literal and metaphorical silence. Literal silence being the absence of sound when nothing is said, and metaphorical silence referring to the absence of speech when something could, or indeed ought, to be said. Degerman explained that both kinds perform an important function in everyday interactions with others, yet only some are taken to be meaningful or welcomed silences, whereas others can create discomfort. That is, whereas some shared silences can facilitate a sense of closeness, mutual understanding, and intimacy, others create ambiguity that can be experienced negatively.

Taking up the invitation to reflect on the communicative and deeply embodied role of silence, Bristol Schola Cantorum performed a piece illustrating in practice how silence and music – like two sides of the same coin – shape the way we experience sound and its absence. Joining in the discussion, University of Bristol music scholars, Professors Emma Hornby and John Pickard offered their perspectives on the role of silence in musical performance and composition, prompting reflection on the breath and the careful placement of silence in orchestral performances.

Drawing these perspectives together, speakers and panellists, including philosopher of language, Dr Anthony Everett, and EPIC Principal Investigator, Professor Havi Carel, engaged in a thought-provoking panel discussion spanning tensions in conceptualisations of silence in the West and East, and its utility – or perceived lack of – in Western analytic philosophy, to its role in palliative care. Each of these perspectives provided avenues for reflecting on the role of silence in different contexts, including healthcare, highlighting tensions between the silence that occurs when no further speech is needed and the silence that emerges as a result of communicative failures between practitioners and patients.

In my experience, the invitation to reflect on silence prompted thoughts about voluntary and non-voluntary silences, particularly in the context of my own research on the COVID-19 pandemic and the measures used to control it. While for some, the silence that followed periods of national lockdowns and widespread closures of busy, otherwise noise-filled environments was experienced as a welcome break, for others, the (relative) absence of noise, and perhaps in particular the absence of other people, was deeply distressing. That is, while silence can bring a sense of peaceful solitude in some cases, in others it can amplify feelings of social isolation and loneliness.

Hence, not only did the event provide a space to reflect on the role of silence in music and philosophy, but it also provided opportunities to reflect on silence more generally. The significance of this is especially pertinent in times of widespread upheaval and crisis, like pandemics, but also other kinds of crisis, such as war and conflict, where silence as an absence of sound could be reconceptualised as a privilege not all have access to. Overall, while silence exists in many forms, its role in society, and its seemingly neutral or passive nature, can mean it is taken for granted, and yet its significance extends beyond its communicative function – it is in many ways a way of being and relating to others and the environment of which we are a part.

Author bio

Kathryn Body is an early-career researcher working at the intersection of the medical humanities, public health policy, and qualitative health research. She has a Master’s degree in Medical Law and Ethics from King’s College London and recently completed her PhD in the Department of Philosophy at the University of Bristol. Kathryn’s PhD research analysed online qualitative survey data on the COVID-19 pandemic in the UK, Japan, and Mexico, with a specific focus on embodiment and other aspects of subjective, lived experiences that came to the fore during that time. Currently, Kathryn is working as a part-time research assistant in the Anthropology Department at University College London, on a project exploring the biosocial impact of multiple caregivers in the lives of children and young adults, with a particular focus on mental health and wellbeing.