Producing a Worthy Illness

Symposium: February 19, 2016

For Americans experiencing chronic and acute illnesses, fundraising through crowdsourcing websites has become a popular method to pay for the extraordinary costs of health care and medication. Despite recent legislative efforts, paying for health care continues to be a common cause of financial strain and bankruptcy, especially for those living in poverty. At the same time, the dramatic rise in digital participatory media has provided new opportunities for social and political engagement, while simultaneously creating new spaces of exclusion.

Nowhere do we see the neoliberalism of health care in America dovetail with the rise of new media more than on crowdsourcing websites like GoFundMe.com and YouCaring.com, where people create campaigns to solicit donations for medical care from family and friends, and to share their narratives through social networks. As competition for crowdsourced funding increases with every new appeal, fundraisers are obliged to produce compelling illness narratives, often in the form of testimonial videos, with the hope of encouraging donations and guaranteeing their campaign’s spreadability beyond their existing social networks.

This project studies these new forms of self-representation from the perspectives of public health, medical anthropology, and media and communication studies. Our collaboration explores how digital humanities can illuminate emerging illness experiences and the ways that citizens navigate gaps in the US health care system. How do such media forums alter and reinforce social determinants of health? How do they legitimize neoliberal notions of self-marketing and individual responsibility for survival? How do patients and families engage with this new digital space to solicit new forms of care and support? This project will help establish an innovative, interdisciplinary, multi-staged research study to investigate these questions. In conjunction with this project, and with support from the Simpson Center, we will host a symposium in February 2016 to explore how digital media is changing health-related participation and engagement. 

Crowdsourcing Care: Health, Debility, and Dying in a Digital Age

We invite scholars to join us in a participatory, half-day symposium on February 19, featuring Brian Goldfarb (UC San Diego), Kalindi Vora (UC San Diego), and Janelle Taylor (University of Washington). We will explore how participatory media intersects with experiences of health, illness, care, debility, and dying to produce new subjectivities, modes of participation, narratives, and social forms.

Together we will address a set of key questions, including:

• How do patients and families engage with participatory media to solicit new forms of care and support?
• How is this also influencing institutional practices of care?
• In a time of acute austerity and neoliberalism, how is participatory media being deployed as both a device of discipline and self-fashioning, and as a tool for navigating depleted social systems?
• How do social media forums reinforce inequities and social determinants of health?

This symposium aims to ignite a small but vibrant network of scholars and practitioners who are considering these themes in their respective fields. In a workshop-style format, we will identify synergies in approaches and methodologies across diverse, interdisciplinary research projects.