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.