From ‘small stories’ to ‘communities of care’ with/in narratives of illness and death (SMALLCOMM)

The stories we hear about illness are usually centred on an individual’s journey to recovery: we follow and become invested in their heroes and heroines  – the warriors, the survivors, the ‘fighters’. But how often are we asked to look at illness within communities, at the structural elements surrounding ill bodies, and at death as the playmate of life, rather than its enemy? How do communities narrate experiences of illness and death? What if, instead of the pronoun I, we tell a story in the first-person plural?

Led by Marta Cenedese, the UKRI Guarantee-funded project From ‘small stories’ to ‘communities of care’ with/in narratives of illness and death (SMALLCOMM) (grant number: EP/Y014057/1) seeks to attend to collective narratives of illness and death by organising creative workshops and analysing a sample of different works published in recent years. SMALLCOMM aims to understand how, as communities, we narrate such experiences, but also how ‘communities of care’ are shaped and mobilised through stories and storytelling.

The project will analyse a range of novels, memoirs, films and a podcast in English, French and Finnish/Swedish.

Film poster for La Permanence, featuring a desk with a stethoscope on in front of a door with brown tartan print.

La Permanence (On Call)

A film by Alice Diop (2016)

Cover art for 'Själö, island of souls'. The back of a person in a long coat walking away with their shadow rippling on the water behind them. Blue image on white background.

Själö, island of souls

A film by Lotta Petronella (2020)

Poster for IM/PATIENTE podcast. A bright pink square with the podcast title in uppercase black font with the outline of a watch beneath.


A podcast (and companion book) by Maëlle Sigonneau and Mounia El Kotni (2019–2021)

Book cover art for 'When we were Birds', featuring an antebellum-style mansion with white walls and a green roof surrounded by overgrown plants.

When we were Birds

A novel by Ayanna Lloyd Banwo (2022)

Theoretical Directions

The public narrativisation of illness is not a new phenomenon. However, the focus to date has been on individual stories of illness and recovery that are mostly bound to a first-person singular narration, which excludes both tales of death and collective storytelling.

Despite the fact that our understanding of the meanings of the ‘good death’ are continually constructed and intimately negotiated by the stories we tell about illness, care and healthcare access, and their intersectional social relations, death studies and critical medical humanities have not yet been systematically brought together. In the context of the Covid 19 pandemic and its aftermath, there is the sense of a renewed urgency to attend to the discursive landscape of illness and death, to understand how, as communities, we narrate these experiences, and to “repair the relationship of individuals to their communities and to revive a commitment to citizenship” (Jurecic 2016, 18).

Situated within the field of the critical medical humanities, SMALLCOMM aims to contribute to a growing body of scholarship on illness narrative that seeks to account for greater complexity of illness experience, as well as of narrative form and context.

The project’s main research questions are the following:

      • How do contemporary communities narrate experiences of illness and death?
      • What does community mean in a narrative context–who and what is involved, and how?
      • What narrative forms, structures and practices emerge in an environment in which communities are actively engaged in “storying” illness and death?
      • How do these narratives engage with and depart from larger cultural scripts (i.e. counter- vs. master-narratives)?
      • What are the wider cultural and theoretical implications of approaching illness and death narratives as a community practice?
      • How does a focus on ‘community narratives’ highlight invisible care practices and hence positively valorize an ethics of interdependence?

To answer these questions, SMALLCOMM will employ a mixed methods approach. Its ambition is to create an analytical framework that holds together literary-textual and visual analyses of published narratives and the empirical exploration of the ‘small stories’ of individuals within their community contexts. A focus exclusively on published accounts of illness and death risks missing community experiences articulated in messier, potentially less polished modalities, and that are perceived as non-normative or marginal. The project aims to extend the field of narrative studies by deepening our understanding of the forms and practices of illness and death narratives expressed by communities. Theoretically, it also marks a productive intersection of the interdisciplinary fields of critical medical humanities and queer death studies, which will offer further opportunities to pay attention to ethico-political and post-humanist critiques emerging from the interlacing of the environmental and medical humanities.

Further resources

Cenedese, Marta-Laura and Clio Nicastro (eds). [In press.] Violence, Care, Cure: Self/perceptions within the Medical Encounter. London, New York: Routledge (18 chapters + introduction) 

Cenedese, Marta-Laura. 2024. ‘The Other Side of Abortion: The Doctor-Writer in Martin Winckler’s La Vacation (1989).Modern & Contemporary France 33:4  

Cheston, Katherine A., Marta-Laura Cenedese, Angela Woods. 2023. ‘The Long or the Post of it? Temporality, Suffering and Uncertainty in Narratives following Covid-19.’ Journal of Medical Humanities  

Saramo, Samira and Marta-Laura Cenedese (eds). 2020. ‘Connective Histories of Death.’ Thanatos 9:2 (pp. 161, 6 peer-reviewed articles + introduction)