Claire Jeantils, Rong Huang, and Benjamin Dalton unravel the stories behind the International Narrative Neurology Network (INNN), a cross-sectoral network that investigates Narrative Neurology from a practical and theoretical perspective.
All of our approaches to narrative neurology begin with a story that motivated each of us. These interwoven stories also demonstrate the power of storytelling for bringing people together in interdisciplinary conversation.
What is Narrative Neurology?
Each of us, with our unique story, brings different approaches to what we call Narrative Neurology. And as the network grows, as we plan new meetings and think about future directions, Narrative Neurology takes on new meanings. But if we had to establish some working definitions or initials directions, the network investigates three major approaches that overlap in multiple ways and influence one another.
The first, the one that sparked the launch of this network is narrative neurology (Galichon, Micoulaud-Franchi 2022) in the sense of a narrative intervention in medical practice, influenced by “narrative medicine”. Narrative medicine is a medical approach that teaches clinicians “narrative competences”, enabling them to “acknowledge, absorb, interpret, and act on the stories and plights of others” (Charon 2001). As a narrative practice, narrative neurology includes a general neurological narrative approach, which encompasses best practice recommendations related to the impacts of neurological disorders (i.e., any condition affecting the nervous system, including the brain). Narrative neurology also involves a collection of tailored narrative practices specific to individual neurological illnesses and disorders that are responsive to individual particularities. While research on adapting narrative medicine to specific neurological illnesses seems necessary, the network argues that we should also recognise and consider the vast number of illnesses and disorders neurology practitioners encounter daily.
The critical medical humanities have criticised narrative medicine’s focus on the illness narrative and warned that it was losing touch with the diversity of lived experiences of illnesses (Woods, 2011). Furthermore, some narrative medicine cultures are reluctant to perceive narrative medicine as something more than an “approach” or a theory. And yet, narrative medicine still enters clinical spaces. So, we ask, in the absence of specific guidelines regarding the use of narrative practices in clinical spaces of neurological care, what methodologies do clinicians and researchers already use? What kind of epistemological approach do we encounter in such undertakings? Are there any illness-specific considerations in narrative medicine that practitioners should take into account during the therapeutic follow up? Looking at the applicability of narrative medicine requires a focus and a speciality-led approach, gathering the best research and people the field has to think through challenges, setbacks, and hopes.
The second approach also sees narrative neurology as a means of narrativising neurological experiences from multiple perspectives. Here we think about patient, caregiver, and practitioner narratives of lived experience in neurology services, but also cultural representations more broadly.
Our third approach aims to think about diverse cultural understandings of ‘narrative’ and ‘neurology’. Indeed, we see narrative neurology as doing important critical and creative work beyond therapeutic outcomes and benefits, whether that be from seeing its capacity to formulate responses to capitalist and productivist imaginaries of the brain within cultural and scientific discourses, to aiding in the critical co-design of new environments for clinical care and follow-up.
Weaving our personal stories and interests
The critical medical humanities played a profound role in Claire’s PhD research on epilepsy narratives and narrative medicine. Like in many other conditions, epilepsy narratives are not as straightforward as society would like them to be, which is something narrative medicine approaches had previously left unacknowledged (Jeantils, 2023). Still, Claire recognised the value of some of the narrative medicine approaches to understanding/facilitating interactions between people and experiences in the clinic. And it seemed that as critical medical humanities scholarship moved beyond a narrative footing to include other essential aspects of illness and health experiences, it left narrative medicine behind.
Even if critical medical humanities and narrative medicine were on opposite sides of the narrative studies spectrum, they shared the belief in the impossible translation of critical concepts into practice. Claire kept thinking about a middle ground between these two approaches, noticing how much tension the clinical space was already holding. As she grappled with numerous ethical and theoretical questions about the implementation of narrative practices, she realised she might not be the only one wondering about all of this and reached out to Rong Huang and Ben Dalton to develop a network which would gather people from various backgrounds, disciplines, and with different areas of expertise. Quickly after they shared the network’s call for participation.
Rong and Claire met during Rong’s year-long visit at the Institute for Medical Humanities. Her expertise in medical education and her knowledge of the Chinese narrative medicine scene were invaluable in constructing a network with an international reach, up to date on current narrative practices, and aware of pedagogical challenges in health. Rong’s engagement with the INNN is driven by a desire to investigate how translation operates between everyday language and professional discourse, between personal experience and institutional care, and between humanistic critique and clinical practice. Her works on narrative medicine and medical pedagogy speaks to such translational endeavours, as she develops interdisciplinary programmes in China that integrate humanistic inquiry and literary analysis into clinical training. The narrative medicine workshops facilitated by Rong in China attract medical professionals from various branches to explore narrative potentials in healthcare.
Indeed, Rong observes that the concept of translation is not merely a cross-linguistic act but also as a dynamic meaning-making process across disciplines and cultures. Translational medicine, in particular, seeks to bridge the gap between scientific research and clinical practice. Narrative neurology is closely informed by this translational approach to medical humanities (Engebretsen, Baker forthcoming 2026) as a movement from conceptualisation to application, with a clear goal of influencing and improving care. Narrative medicine, for example, has contributed to a narrative-based medical humanities movement in China, leading to the publication of a landmark national healthcare policy, the ‘Action Plan for Enhancing Medical Humanistic Care (2024-2027)’. The translational journey from neurological narratives to neurological care, however, remains under-explored and under-theorised, often fraught with misinterpretations, ambiguities, and for many patients, painful experiences that cannot be expressed by simple generalisations. In response, there seems to be a shared sensibility among INNN members to identify themselves as ‘cultural facilitator[s]’ of medical knowledge and lived experience (Martín 2018).
Claire had been following Ben’s work for quite some time when they met in October 2024. Ben was struck by the power of narrative and storytelling when it came to understanding the brain and providing neurological care, through a dramatic personal experience he encountered at the beginning of his PhD at King’s College London (KCL) in 2015. He was beginning his doctoral research–which eventually evolved into his forthcoming book (Dalton 2026)–on the contemporary French philosopher Catherine Malabou, whose work is full of brains and stories of neural transformations, from What Should We Do With Our Brain? (2005) to The New Wounded (2007) and Morphing Intelligence (2017). At this stage, though, his understanding of the brain was theoretical and abstract. This all changed when, in December 2015, Ben was attacked by someone shouting homophobic slurs at him and his date; a punch to Ben’s face knocked him unconscious, and he was sent by ambulance to the hospital, where he received a scan to check for concussion. The scan changed (and ultimately saved!) his life, picking up a pre-existing build-up of cerebrospinal fluid in his brain caused by a small benign tumour (a tectal plate glioma). Suddenly Ben’s academic research on the brain via Malabou became much more personal. Through scans, neuro-surgery, and a decade of annual clinical follow-ups, he gained a new sense of intimacy with the internal workings of his brain and with the mechanisms -administrative, cultural, medical- of long-term neurological healthcare.
The challenges involved in creating this network
Creating such a network comes with multiple challenges. Although we have a clear vision of why we created the network and what we want to achieve, we still need to navigate, accommodate, and understand the expectations and needs of our members. With such a varied group of people, we quickly realised that a unique meeting format would not work for everyone. That is why we change the format for each meeting, allowing everyone to participate in various ways. An academic approach to temporality and urgency may differ from that of a healthcare practitioner. The same applies to their attention span and goals. But that implies changing everyone’s habits, which is not always easy nor appreciated.
There’s a lot of traction around the topic of narrative neurology, but many seem to be hoping that we’d have answers to provide, that our meetings would be another conference where they could learn about the topic. However, our network is actually all about investigating and questioning what narrative neurology could mean and do. We are all learning together, figuring things out as we go.
Our goals looking forward
Having shared our initial stories, we are now eager to embark on new narratives. The first year of a network is all about growth, and we’re thrilled to have new people join us on this journey. As we meet potential collaborators from the voluntary and community sector, we’re excited about the opportunities to develop and co-host outreach activities with them. Towards the end of the academic year, we will gear up for a significant event: a conference featuring individual papers and creative activities. These papers will pave the way for the creation of the first narrative neurology special issue, marking a significant milestone for our network.
By sharing the network story, we hope we will find echoes with people who have similar interests and might want to participate, join us or tell their story.
About the authors
Claire Jeantils is an Honorary Fellow at the Institute for Medical Humanities, Durham University. She holds a PhD in French and comparative literature from Sorbonne Nouvelle University. Her postdoctoral research focuses on translational medical humanities and critical approaches to narrative practices in medicine, using epilepsy and chronic illnesses as a case study. Claire is the network lead of the International Narrative Neurology Network and the host of the Raconter l’épilepsie podcast.
Rong Huang is an assistant professor at the School of Health Humanities, Peking University, China. Her research interests include narrative medicine, life writing, and the intersections of literature and medicine. She also engages in narrative-informed medical education, collaborating with healthcare professionals and policy-makers to develop training programmes that cultivate humanistic sensibilities among practitioners. She is now working on the inter/disciplinary history of literature and medicine in the Chinese context.
Benjamin Dalton is Lecturer in French Studies in the School of Global Affairs, Lancaster University. He has worked on Catherine Malabou’s philosophies of (neuro)plasticity and his first book Catherine Malabou and Contemporary French Literature and Film: Witnessing Plasticity is forthcoming with Edinburgh University Press in 2026. His current research looks at conceptions of the hospital across contemporary thought, literature and film, and he is also beginning a project which looks at cultural narratives of brain tumours and neurooncology.
References
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Dalton, Benjamin, 2026 (forthcoming). Catherine Malabou and Contemporary French Literature and Film: Witnessing Plasticity, Edinburgh University Pres.
Engebretsen, Eivind, Baker, Mona. 2026. Beyond the Bedside: Reimagining Narrative Medicine for Knowledge Translation in Reproductive Health. Cambridge University press & Assessment.
Galichon, Isabelle, Micoulaud-Franchi, Jean-Arthur. 2022. Vers une “neurologie narrative”. Pratique Neurologique-FMC.
Jeantils, Claire. 2023. “‘Extirper ce qu’est, pour vous, l’épilepsie.’ Représentations de l’épilepsie et perspectives de soin dans la littérature contemporaine (domaines français et anglais 1984-2018).” PhD diss., Université Sorbonne Nouvelle.
Malabou, Catherine. [2005] 2008. What Should We Do With Our Brain?, translated by Sebastian Rand. Fordham University Press.
Malabou, Catherine. [2007] 2012. The New Wounded: From Neurosis to Brain Damage, translated by Steven Miller. Fordham Univerissty Press.
Malabou, Catherine. [2017] 2021. Morphing Intelligence: From IQ Measurement to Artificial Brains, translated by Carolyn Shread. Columbia University Press.
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