Amplifying the voices of young care leavers

This post by Lucy Jamieson and Wiedaad Slemming considers how an international co-production project helped to empower a group of young care leavers epistemically and politically.

The voices of young care leavers are routinely discounted, ignored or excluded from conversations that directly affect their lives. Their knowledge, insights and expertise about navigating complex systems are rarely centred in policy, practice or research.  Led by Prof Mandi MacDonald (Queen’s University Belfast) and Lucy Jamieson (Children’s Institute, University of Cape Town), the Amplifying the Voices of Young Care Leavers project built an international learning community between care-experienced youth, researchers and practitioners in Northern Ireland (VOYPIC) and South Africa (Mamelani Projects). 

Through online discussions, international exchanges in Cape Town and Belfast, and participatory filmmaking, young people shared their experiences, identified priorities for leaving care research and developed advocacy messages alongside researchers and service providers to change policy and practice.

Despite living more than 10,000 kilometres apart, participants found striking similarities in their experiences. Conversations repeatedly returned to the importance of relationships, belonging, identity and being listened to. Young people spoke about the challenges of securing stable housing, employment opportunities, financial support and mental health struggles before and after leaving care. They also highlighted a less visible need: the desire to feel seen, heard and supported over time rather than only during moments of crisis.

What made this project particularly significant was its commitment to recognising young people as knowledge producers. Participatory filmmaking enabled care leavers to tell their own stories rather than having them interpreted by others. The resulting documentary, United & Unique: Separated by Geography, Connected by Community, foregrounds perspectives that are often marginalised and challenges stereotypical narratives about young people with care experience.

From an epistemic justice perspective, one of the most powerful messages to emerge was that young people are experts on their own lives. The project demonstrated that when care-experienced youth are given meaningful opportunities to participate, they generate valuable insights into what works, what does not, and what change is needed. As participants reflected, leaving care is not a single event but an ongoing process requiring sustained support and strong relationships.

The project's impact continues beyond the documentary. In South Africa, the findings are supporting advocacy for stronger policy commitments and funding for aftercare services beyond the age of 18. In Northern Ireland, the project is helping to highlight gaps between policy commitments and implementation. More broadly, it has created a platform where care-experienced young people can influence public understanding and policy conversations.

For those of us concerned with epistemic injustice, the lesson is clear: meaningful change begins when young people are not only invited to speak but are recognised as credible knowers whose lived experience is vital to shaping the systems that affect them.

The young people have produced a report to accompany the film, which you can download: McCallin_et_al_25_United_Unique_youth_report.pdf

Watch the film:

About the authors

Lucy Jamieson and Prof Wiedaad Slemming, from the Children’s Institute, University of Cape Town visited the University of Bristol to foster a partnership with the Centre for Childhoods and Social Justice.  When planning international research with children, considerations of decolonisation and epistemic justice assume particular significance. 

Epistemic justice asks who is doing the research, with whom, about what, through what means, to what ends, in whose interests and requires reflection on power imbalances to ensure genuine and equitable partnership across cultures and generations.  

International partnerships between the Global North and the Global South are especially challenging due to inequities in resources to produce knowledge, recognition of expertise, and the platforms to have that knowledge heard. Lucy presented on participatory methods used in two international research projects including the co-production of the documentary United and Unique.

A Young Person's Reflections on Exploring Epistemic Injustice Creatively

In this post Anaya, a member of the Bristol Young People's Advisory Group, reflects on her participation in a creative workshop that took place in July 2026. The workshop explored how young people and children are, or aren't, heard and taken seriously.

'Hope' by Anaya. Her description of the work: 'My artwork's name is Hope. This links to epistemic justice because it shows a child struggling to voice their thoughts because they are silenced in a contrast of a black and white world. The yellow light displayed in their mind is hope because it demonstrates that children have colourful thoughts in comparison to our black and white world so if we listen to kids then it will benefit us. The yellow throughout the art mimics light appearing in the darkness which is symbolic of the hope a child's voice can give'.

I have always been aware that whenever children tend to share information with adults, they get ignored because adults believe they are wiser and more knowledgeable. They disregard kids’ views because of a prejudiced belief that every child is immature and unaware, so nothing they say must ever be taken into account. However, I was not aware that this is known as Epistemic Injustice, so this session educated me.

It was an eye opener to discover more reasons as to why adults do this, like they don't want to take accountability for their actions or they genuinely believe they are superior just because of their age. I believe this is very backwards thinking that needs to be improved, as everyone deserves to feel heard and seen. This session did exactly that, as it accepted my views and made me feel valued.

It allowed me to communicate my message through art and it was truly fascinating to see what powerful messages artworks can deliver. I chose to do an art piece about the contrast of light and dark. This mirrors a child's thoughts because they believe the whole world is dark and inconsiderate as it doesn't listen to them. The child's mind, however, is light because it possesses many great ideas just like adults do. My message is the hope that a child's light will be brought into the world of research, therefore making it better and more inclusive to multiple perspectives and lives.

I enjoyed participating in this workshop because it included other young people and addressed the message directly to us to help us become aware of the epistemic injustice surrounding us. In doing that, it made us all feel very comfortable and empowered. After we each completed our own artwork, we went around in a circle and explained the choices we made and why we did them. I loved doing this because it provided a deeper insight for both the researchers and kids involved about perspectives. The diversity in the artwork helped me understand how my peers see the world and how important it is that those views get heard.

Research tends to focus on adults, so it doesn't always work for kids. Workshops like this help research to move forward and progress because they allow it to become more inclusive to everyone. Listening to kids improves many projects that people are completing, especially if they link to young people. This workshop was truly an amazing experience that allowed me to express my opinions in exceptional ways, so I hope that the people involved know they've truly made a difference!

The workshop Anaya took part in is informing a upcoming EPIC Event: Doing Justice to Children’s Voices Tickets, Tuesday, November 3 • 6:30 PM–8:30 PM |Eventbrite. The event is free and all are welcome! Please register via the link above if you want to join us.

Workshop Report: Trust and the Affective Dimensions of Health and Healthcare

 In this post, Sofia Martellini reports back from a workshop on Trust and Affective Justice at the University of Bristol.

Source: Wellcome Collection

On June 9^th, Project EPIC and the Centre for Health, Humanities and Science co-sponsored an afternoon of guest lectures and group discussions, on the theme of Trust and the Affective Dimensions of Health and Healthcare.

While my talk highlighted one aspect of epistemic injustice in healthcare, the wide range of expertise exhibited by the other speakers brought diverse and interesting perspectives on the meaning of Trust and Affectivity.

Professor Havi Carel opened with a provocation: we walk through the world with a deep, unspoken faith in our bodies. We quietly, blindly believe that we're going to be ok and we are capable of doing what we want with our bodies. Illness has the capacity to shatter this tacit certainty, even more so in critical or end-of-life conditions, where our body becomes uncapable of the most basics of actions. She distinguished bodily doubt in everyday illness  from radical bodily doubt; the kind that sets in at the extremes of experience. Here, continuity collapses entirely, the body becomes entirely medicalized, subjectivity dropping away as the body is treated as an object from those around it. Her discussion of ICU experiences, also sourcing from her own personal experience, where passivity is total and people simply have things done to them, was particularly striking.

Dr Ross Pain then turned our attention to Indigenous healthcare in Australia, where outcomes between white and indigenous people remain deeply inequitable. Different contexts have different ways of understanding and processing pain, and Dr Pain highlighted philosophy’s tendency of overgeneralizing in order to arrive to a theoretical explanation. When philosophical concepts like epistemic injustice travel across different cultural contexts, do they actually fit? His notion of the "fittingness condition" asks us to reckon honestly with the limits of our conceptual tools.

Drawing on my time in the LeTs-Care research project, I argued that informal caregivers are victims of hermeneutical injustice, since they lack the shared concepts to make sense of, and communicate, their own experience. In Mediterranean contexts especially, there is often no culturally resonant word for "caregiver" at all; caring is only a part of family duty, invisible and unnamed. My proposed PhD aims to address this through phenomenological interviews and a broader look at how care appears across different cultures, asking whether these radically different ways of understanding care are given any epistemic recognition in the policies that are supposed to help caregivers today.

Doctoral fellow Anna Pathmanathan then brought the discussion to the clinic and the prescription pad, presenting research on antibiotic prescribing disparities across minoritized ethnic populations in primary care. Combining large-scale data with patient and prescriber interviews, her work surfaces how systemic inequity can hide in plain sight, encoded in everyday clinical decisions. The doctor-patient trust relationship varies across social status, culture and other variables, filled with prejudices and epistemic inequalities: understanding how this complex dynamic works can bring light to the issue of overmedicalization, still much present in the UK.

Finally, Cristina Ganz examined communication-based epistemic injustices in doctor-patient relations, mapping how discursive, epistemic, and affective injustices layer on top of each other in clinical interactions. Her clear framework showed how different ways of addressing patients corresponded to different kinds of epistemic injustice and separating them allows us to understand how to better direct the dialogue between doctor and patient.

The variety and depth of  different interventions showed how an apparently simple concept like trust can be conjugated in meaningful but diverse ways, tied to the notion of epistemic injustice. From the creation of a theoretical concept such as radical bodily doubt, to empirical research projects meant to show trust relationships and the issues of philosophy when applied to real cases of trust loss, epistemic injustice and trust intertwine throughout different disciplines and cases. This event made me realize even more intensely how fundamental interdisciplinarity is for better research and progress, especially in fields where theory and practice come into contact. 

Without culturally specific, in-depth empirical research, philosophers can risk falling into overgeneralization, as Dr Ross Pain showed; on the other hand, through philosophically developed concepts such as epistemic injustice, negative clinical experiences can be better understood. By sharing our experiences and projects, our collective understanding of epistemic injustice, trust and affective dimensions can grow throughout different disciplines, bringing progress and new solutions to epistemic injustice issues all over the world.

Sofia Martellini is a Philosophy PhD candidate at the University of Bristol, supervised by Professor Havi Carel and Wilhelm Dagmar. Her research sits at the intersection of epistemic injustice, phenomenology and ethics of care, with a particular focus on informal caregiving and the hermeneutical gaps that leave carers without adequate concepts to make sense of their own experience. She holds degrees in Philosophy from KU Leuven and Applied Ethics from Utrecht University and has been involved in the LeTs-Care European research project. She spoke at the CHHS & EPIC workshop in June 2026.

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.