Thanks so much to my colleague Olivia Banner for leading the charge on this. I really hope it is accepted!
The session “Narrating Bits and Producing Bytes” brings new media studies into conversation with those fields that have, in the past two decades, paid the illness narrative significant attention — among them disability studies, autobiography studies, and medical humanities. Those fields have now a large body of scholarship on the print illness narrative, but their approaches to online illness narratives are, like the online environment itself, still evolving. To advance their conversation with new media studies, this panel includes papers that investigate a range of illness mediations, including electronically mediated illness narratives, print narratives that reflect on that mediation, and the meta-narratives suggested by data aggregation. In considering the relation between print and digital mediation as well as the effects of re-mediation, these analyses of illness mediations allow a deeper insight into the relations obtaining today between illness narratives and how digital platforms intensify the generation of biovalue.
By entering digital ecologies, the illness narrative has become the site of biovalue for biocapitalism. As Catherine Waldby and other scholars of science and technology studies argue, biocapitalism functions by generating value out of the body’s bits, for example in the organ transplant trade and tissue markets. Online, with patient-networking websites, personal blogs, and emails available to it, biocapitalism generates biovalue out of the mind’s discontents — that is, the records of their physical and mental aggravations people express online as well as the inferences made by big data companies who traffic in their data trails. This panel describes an approach to illness mediations that centers how the logic of biovalue contours the articulation of illness narratives and, in so doing, prepares them for algorithmic processing. It seeks to then elaborate what possibilities for care of the self and of the community are possible within digitally and algorithmically mediated illness publics.
Olivia Banner considers big data’s application to illness narratives. Publics that form around shared illness experiences are used as the basis for revenue streams and patient-population creation, an “algorithmic medicalization.” The paper examines instances where pharmaceutical companies “listen” to communications on social-networking sites and elsewhere to define new patient populations and develop pharmaceuticals targeted to them. As big data practices continue to evolve, we will see more such applications of medicalized models to people’s online communication. The science fiction novel Harmony (Project Itoh, 2001) depicts one dystopian future possible from the merging of big data practices, medicalized conceptions of bodies and minds, and advanced biotechnologies. The novel, presented via what it calls Emotional Mark Up Language, illustrates the significance of marrying affectivities with technologies in bringing this future into being. In the novel’s world, by continuing to link our affective lives to machinic processes, we construct the framework by which those same processes calculate how to control and modulate our mental health. However, through a last-minute narrative trick, the novel suggests that readers still have time to refuse their final capture by big data and biovalue’s logic, and this paper concentrates on elucidating the tactics the novel implies are necessary for such a refusal during this moment of algorithmic culture’s intensification.
Michelle N. Huang explores how electronic communities afford the creation of healthcare counterpublics, and it does so by looking at the print archive of a digitally mediated space of care. When Fred Ho, saxophonist, artist, academic, and political activist, was diagnosed with Stage 3-b colorectal cancer in 2006, he and his friends began a listserv, “Warriors for Fred,” to provide both physical and psychic support. Ho’s emailed “diary entries,” as well as the responses and organizational emails sent by the Warriors, were gathered into a book, Diary of a Radical Cancer Warrior: Fighting Cancer and Capitalism at the Cellular Level (2011). This paper’s author argues that Diary articulates a genre she deems “critical autopathography,” an intergeneric personal narrative of illness that extends the experience of illness beyond the individual body to critique the larger structures that produce it. By embedding radical ideological critique within diary entries on his treatment, Ho’s critical autopathography makes clear that cancer is intertwined with capitalism, the individual interpenetrated by the social. Reading Diary’s critical autopathography necessitates attention to both microscopic and macroscopic scales to understand cancer’s production through industrial toxins and environmental illness, as well as through a medical industrial-complex that views treatment as a function of biovalue. If, as Ho argues, the increasingly cellular sprawl of capital causes illness in social institutions as well as in bodies, then the Warriors for Fred listserv represents an alternative framework of care that locates in electronic communications the potential for a utopic space that militates against biocapitalism’s operations.
Kim Brillante Knight’s paper focuses on narrative as produced by illness-related data. The author uses Marie Laure-Ryan’s concept of narrativity, in which a media object can be said to evoke narrative, to read epidemiological maps as narratological objects. Since John Snow’s 1850s cholera maps, the disease map has been an invaluable epidemiological tool that makes the network of disease transmission visible and narratable within the context of official public health institutions. This paper will focus on Sickweather, an example of how today’s illness-forecasting mobile apps remediate the epidemiological map. Presenting its epidemiological data on a geolocational map, the app harvests data from Twitter and collects symptom reports from users. Given that the geolocational map is a familiar object and a frequent site of participatory culture, one narrative suggested by the remediation of the epidemiological map into illness-forecasting software is that it opens public health discourse to a wider healthcare public, moving epidemiology from scientific institutions into the realm of everyday citizens. Despite these seeming benefits, however, these apps resituate the functions of making visible and narrating in a way that no longer aligns neatly with the aims of public health. This paper argues that the illness-forecasting map calls forth a secondary narrative in which the app’s logic of premediation shapes habits of data reporting, equating them with responsible and healthy citizenship, thus continuing to produce biovalue and extending the sociotechnical network of the app into the future.
Olivia Banner is assistant professor in the Emerging Media and Communication Program at the University of Texas at Dallas. Her research considers the intersections of literature, media, medicine, and health and illness, with a specific focus on how race, gender, and disability are refracted within these intersections. Her book, Communicative Biocapitalism: Mediating the Voice of the Patient in Digital Health, is forthcoming from University of Michigan Press. She has published articles on biotechnologies, literature, film, and online illness publics in Signs, Discourse, and the edited collection Identity Technologies: Constructing the Self Online, and an article on structural racism and medical humanities is forthcoming in Literature and Medicine. She is a founding member of the new journal, Screen Bodies; a member of the Medical Futures Lab in Houston; a former Andrew Mellon Postdoctoral Fellow at the Humanities Research Center, Rice University; and a former graduate fellow at UCLA’s Center for Society and Genetics.
Michelle N. Huang is University Graduate Fellow and dual-degree Ph.D. candidate in the Departments of English and Women’s, Gender, and Sexuality Studies at the Pennsylvania State University. Her dissertation project examines posthumanist aesthetics in twentieth and twenty-first century Asian American literature. Her article, “In Uniform Code: Catherine Barkley’s Wartime Nursing Service in A Farewell to Arms,” is forthcoming in Twentieth-Century Literature. She has also authored, with M. K. Czerwiec, R.N., an article titled “Hospice Comics: Representations of Patient and Family Experience of Illness and Death in Graphic Novels,” which was published in the Journal of the Medical Humanities in 2014.
Kim Brillante Knight is assistant professor in the Emerging Media and Communication Program at the University of Texas at Dallas. Her research focuses on digital culture, negotiations of power, and the formation of identity, particularly in relation to marginalized groups. One of the nodes of this research is a focus on viral media. Her book, Media Epidemics: Viral Structures in Literature and New Media, is currently under review with Routledge. Her article addressing viral media as auratic, “The Work of iamamiwhoami in the Age of Networked Transmission,” was recently published by The Projector: A Journal on Film, Media and Culture, and she has an article forthcoming on viral structures in digital art in electronic book review. Knight treats digital publics as both mode and topic of scholarship and her book Fashioning Makers and Counterpublics: Critical Making and Public Humanities is under advance contract with University of Iowa Press. Her public work can be found at kimknight.com, thespiraldance.wordpress.com and fashioningcircuits.com. She also publishes widely in the field of gender and digital networks and is a reviewer for Digital Humanities Quarterly and Leonardo.
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