2021 Condon Prize: Improvising care: A theatrical exploration of Turner syndrome subjectivities

Abstract

This article discusses an ethnographic theater project designed to explore how social performances of gender and disability shape the experiences of those with Turner syndrome, a genetic condition causing short stature and infertility. Working alongside two interlocutors with the condition, our rehearsals demonstrate subjectivity to be an ethical, relational, and generative practice of striving for good that fosters self-care and empathy for others. Our collaboration exemplifies how anthropological approaches that engage vulnerability and improvisation encourage our interlocutors to investigate their self-understandings with us in real time. Such communal explorations are frequently punctuated by uncertainty, contradiction, and tension, which shape interrelational processes of self-formation and invite the ethnographer to reflect and improve upon shared expectations for the research encounter. This article, therefore, outlines a care-oriented anthropology that prioritizes accessibility, recognizes the creative in the everyday, and embraces failure as an inextricable part of our research and the lives of our interlocutors.

care, ethics and morality, performance, subjectivity, Turner syndrome