Cancer patienthood and survivorship are often narrated as stories about hair and wigs. The following article examines cultural representations of cancer in mainstream memoirs, films, and on TV across Western European and American contexts. These representations are both the ideological substrate and a subtly subversive staging of a newly globalized cancer culture that expresses itself as an embodied discourse of individual experience. Wigs have become staples of an alternative story of especially women’s cancer experience, one that contrasts with the advertising (...) slogans of what has been termed ‘Cancer Inc.’ But wigs are also a prop for consumerist self-(re)invention and can be appropriated stereotypically, with regard to stock gendered expectations – despite and alongside their subversive potential. (shrink)

Long COVID affects millions of individuals worldwide but remains poorly understood and contested. This article turns to accounts of patients’ experiences to ask: What might narrative be doing both to long COVID and for those who live with the condition? What particular narrative strategies were present in 2020, as millions of people became ill, en masse, with a novel virus, which have prevailed three years after the first lockdowns? And what can this tell us about illness and narrative and about (...) the importance of literary critical approaches to the topic in a digital, post-pandemic age? Through a close reading of journalist Lucy Adams’s autobiographical accounts of long COVID, this article explores the interplay between individual illness narratives and the collective narrativizing (or making) of an illness. Our focus on temporality and suffering knits together the phenomenological and the social with the aim of opening up Adams’s narrative and ascertaining a deeper understanding of what it means to live with the condition. Finally, we look to the stories currently circulating around long COVID and consider how illness narratives—and open, curious, patient-centered approaches to them—might shape medicine, patient involvement, and critical medical humanities research. (shrink)

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. (...) In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation (such as chronic illness), and of alternative reflective practices within healthcare education that encourage engagement with both mind and body. (shrink)

This thesis is about the crisis in representation that accompanies the attempt to account for lived experience, with particular reference to bodily pain in social science. The diagnosis of this problem of experience identifies epistemology as an inappropriate means of knowing that initiates a translational paradox unable to satisfy the simultaneous demands of making lived experience familiar in representational form yet retaining the foreignness of the original experience at the same time. This problem of simultaneity is not a problem, however, (...) if it is built into a way of knowing, something that escapes epistemological conditions of possibility with its either/or of singularities. To know in such ‘double vision’, or fractionally, characterises post-epistemological thinking. This thesis draws on a relatively underdeveloped method for practicing a fractional means of knowing from post- actor-network theory, that of the pinboard, and explores how it might be usefully applied to the problem of experience. The thesis constitutes an experiment in producing a social science account of the lived experience of chronic pain using this method as an alternative to conventional epistemological techniques that initiate the problem of experience. Through initial theoretical discussion, followed by reflection on its practical application involving the construction of fractional accounts of lived experience for five participants experiencing chronic pain, the pinboard is developed as a technique that seeks to maintain ‘double vision’ whilst inherently resisting attempts to resolve the juxtaposition it makes visible, enacting and engaging in an ontological politics with conventional methods of social analysis. This includes discussion of how the method might be transported from methodological knowledge spaces to effectively intervene on such conventional methods. (shrink)