Coming of Age in High-Tech Medicine: Knowledge Ecologies, Collaborative Storytelling, and Heart Transplantation

• In Event: Feminist Technoscience by Other Means: Reconfiguring Research Practices for World-Making Beyond the Academy - II

Abstract

Transition is an emergent topic in transplant medicine as more pediatric heart transplant patients are living to adulthood. However, transition is also marked by a rise in mortality rates just as young people gain legal status and responsibility for their medical care.

Connecting Feminist Science and Technology Studies (FSTS) with youth participatory action research (YPAR) that is situated between critical media literacy production (Hammer, 2011) and pedagogies of transformational resistance (Cammarota, 2017), this research seeks to support young people through the production of a series of educational videos aimed at teaching others —including pre- and post-transplant patients, parents, medical providers, teachers and classmates—about the experiences and challenges of living with a graft organ. What emerges through these narratives of patient sensemaking reveals the tension associated with coming of age in the interstices of disability and normalcy, childhood and adulthood, existential uncertainty and the rituals of care that structure daily life.

Drawing upon knowledge ecology analysis (Sofoulis, 2012), I explore how “compliance” and “adherence” are translated and understood within differing knowledge ecologies. I trace the challenges of thinking with, through, and about others—forms of knowledge brokering, translation and becoming— even in collaborative efforts to develop local ecosystems of care that can support young people, their families, and the medical professionals who care for them in the transitory spaces opened up by high-tech modern medicine.

Author

• Nadine Tanio, University of California, Los Angeles