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Short abstract:

In this presentation, I specifically turn my attention to the health-political aspects of the mundane, daily-grind practices of un/invited participation in Type 1 Diabetes care. With this I illustrate how the everyday engagement with medical devices led to an influential global health movement.

Long abstract:

The #WeAreNotWaiting movement in Type 1 Diabetes (T1D) care is often employed as a showcase for tech-optimist patient innovators who took matters into their own hands. In T1D affected individuals are “invited” to participate in their care, the members of the #WeAreNotWaiting movement use this "invitation" not only to uninvitedly rethink and redo algorithmic care, by automating parts of their (self)care in an open-source manner, but also critique and challenge the ones that invited them in the first place––device manufactures and healthcare professionals. Most of the discussions of the #WeAreNotWaiting movement challenging clinicians, regulatory bodies, and the pharmaceutical industry, is characterized by a focus on the bigger health political aspirations and the global aspects of this health movement. In this presentation, I center my inquiry around the mundane everyday-life practices of tinkering, repair work, maintenance, and other daily practices of un/invited material participation in care, and with this illustrate how the everyday engagement with medical devices in, on, and with bodies builds the basis for the activism of the global #WeAreNotWaiting movement in the first place. Drawing on ethnographic fieldwork within the German #WeAreNotWaiting community and twenty-eight in-depth interviews I introduce three different situations of mundane un/invited participation in form of ethnographic vignettes: collective maintenance, repetitive data work and elaborative tinkering. I argue that specifically turning the attention to the health-political aspects of the mundane, daily-grind practices of participation in care, can unravel how these practices led to an influential global health movement and with this transform T1D care.