On Being a Pancreas in the Digital Era asks how older diabetics live with the data they collect on a daily basis in order to manage their illness. The project draws on three central observations: 1) that since the introduction of home glucometers in the 1970s, diabetic care has become increasingly driven by self-collected numerical data, making diabetics (reluctant) pioneers of the quantified self movement and the datafication of daily life; 2) that work exploring diabetic experience outside of the realm of medicine remains very rare, and even rarer when it comes to older adults’ experiences ; 3) that diabetic data is communicational, and envisioning it beyond the medical model could offer a necessary reframing of diabetic experience.
Building on these observations this research-creation project asks, what are the stories that older diabetics tell with and about their data? Although diabetic data is typically approached from a medical lens, it speaks to a whole life reality. The common observation that diabetes management is 24/7 often refers to dealing with a chronic illness every moment of one’s life and the concurrent medicalization of the diabetic’s reality. However, it can also be taken to mean that since diabetic management is enmeshed in all aspects the diabetic’s life it is specifically not limited to a medical reality, but rather is a fact of living, of experiencing, of being.
The research will combine interviews and research-creation to contribute to building knowledge on older diabetic experience and relationships with data. The first phase of the project will invite 8-12 older diabetics to participate in an interview about their experience as diabetics and their relationship to their data. The interview will concentrate particularly on what diabetics think about the data they collect to manage their illness, how they make sense of and share that data, how their relationship to data has changed (if at all) since diagnosis, and what they imagine as desirable future for their relationships to diabetes and data.
The second phase of the project involves creating a multichannel audio montage of participants’ voices telling their stories, as well as musical interludes derived from participants’ voices. The contents of the montage are meant to simultaneously reveal insights from older adults about how they live with their data and to create a meditative mix of intelligibility (voice) and unintelligibility (voice converted to ambient sounds and music) that draws connections to multiple aspects of diabetic data: the difficulty of making sense of the data, the challenges of gaining different kinds of access to the data, the inevitability of missing and erroneous data points, and concerns of data privacy, to name but a few.
