November 8-10, 2017.
I examine how type 1 diabetes (T1D) open source hackers (OS/H) simultaneously manage their condition as compliant patients and as disruptive citizens, challenging standards for healthcare management and legal and regulatory processes. Diabetes demands constant self-monitoring, and as a result, those diagnosed exemplify the ultimate quantifying selves; unlike the quantified self (QS) consumer-movement marketed with stylized tracking devices, as one STS scholar has noted, nirvana for self-trackers is a daily hell for those managing T1D (Mialet 2015, personal communication). Resisting U.S. models of health privatization and commodification, some members of T1D OS/H communities frame their work as a public good. These patients position themselves as citizens, consumers, and owners of their health data, data deeply embodied and lived. But as corporations expand into the closed-loop holy grail, the boundaries between patient advocacy and corporate strategy grow ambiguous.