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.
