Stitching Stories of Broken Hearts: Living Response-ably with the Technologies of Death and Dying at the Beginning of Life

ABSTRACT

Born with half a heart, my firstborn child died when he was three weeks old. This auto-ethnographic article takes as its point of departure one of the questions that this tragic event made me ask: How do technologies reconfigure responsibility for death, as technologies are involved in ending or saving the lives of children like my son? With this question, I introduce a new research agenda within reproductive studies regarding how technologies remake death and dying at the beginning of life. Drawing on the notion of phenomena from agential realism, I examine how responsibility emerges in different ways as I tell my son’s story together with media and medical stories told about foetuses or infants who died after having been diagnosed with hypoplastic left heart syndrome. I show that we need to challenge the idea of the autonomous subject that shapes the Cartesian understanding of ethics and responsibility. By stitching stories of broken hearts together, my storytelling is not only a call for a feminist ethics of living response-ably with technologies of death and dying at the beginning of life, it is a way to find response-able practices of living with the deaths of foetuses and infants.

KEYWORDS:

• Technologies of death
• response-ability
• infant death
• reproductive technologies
• ethnography of emergent phenomena
• feminist ethics

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Det Frie Forskningsråd [grant number 9037-00118B].

Notes on contributors

Stine Willum Adrian

Stine Willum Adrian is an associate professor in techno-anthropology at Aalborg University, Denmark. Adrian’s work is interdisciplinary, joining feminist technoscience, ethnography and ethics with studies on reproductive technologies. Adrian has done comprehensive ethnographic studies on donor sperm and assisted reproductive technologies, and currently she is a PI for the research project Technologies of Death and Dying at the Beginning of Life, funded by the Independent Research Fund Denmark.