title: Producing a worthy illness: Personal crowdfunding amidst financial crisis.
abstract: For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity--along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)--are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March-September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.
authors.affiliation: University of Washington Bothell, School of Interdisciplinary Arts & Sciences, 425-352-5270, Box 358530, 18115 Campus Way NE, Bothell, WA 98011, United States. Electronic address: lsb26@uw.edu.
authors.forename: Lauren S
authors.initials: LS
authors.lastname: Berliner
authors.affiliation: University of Washington Bothell, School of Nursing & Health Studies, 425-352-3621, Box 358532, 18115 Campus Way NE, Bothell, WA 98011, United States. Electronic address: Njk8@uw.edu.
authors.forename: Nora J
authors.initials: NJ
authors.lastname: Kenworthy
mesh_terms: D017281:Cost of Illness; D063045:Crowdsourcing / Q000379:methods* / Q000706:statistics & numerical data / Q000639:trends; D003695:Delivery of Health Care / Q000191:economics* / Q000706:statistics & numerical data / Q000639:trends; D057172:Economic Recession / Q000706:statistics & numerical data / Q000639:trends*; D006304:Health Status; D061889:Healthcare Financing / Q000941:ethics*; D006801:Humans; D033262:Narration; D061108:Social Media / Q000639:trends*; D014481:United States
keywords: Austerity; Crowdfunding; Deservingness; Health disparities; Media literacies; Neoliberalism; Participatory media