Annually, more than 1000 Canadians are added to transplant lists and approximately 260 people die waiting. Transplant improves pressing physical, quality of life and economic impacts of organ failure, but graft failure and challenges adhering to complex post-transplant care carry risks. As medical assistance in dying (MAiD) has entered into Canadian legislation and culture, individuals experiencing graft failure are also amongst those requesting access, defying the curative intent of transplant. “Frictions of Futurity and Cure in Transplant Medicine” reconceptualizes three central challenges extending across the transplant process and organ sites: (1) organ procurement and waitlisting of transplant recipients (2) recipient adherence to medical care (3) the experience and sequelae of graft failure. We argue that the three challenges are interrelated and can be radically transformed through critical disability (“crip”) studies and feminist science and technology studies (STS), scholarship that is rarely in conversation with transplant medicine. Our project mobilizes feminist/crip STS to recast deeply held assumptions, standard practices and foundational principles of transplant medicine.
Using an interdisciplinary qualitative approach based on narrative, ethnographic methods and arts epistemologies, we will trace interrelated aspects of the three challenges through heart, liver and kidney transplant sites. Bringing together observational data, longitudinal interviews, discourse analysis and arts- based participant-driven knowledge translation, we aim to:
1. Characterize and communicate experiences of transplant recipients to inform the development of feminist/crip materialist understandings of key concepts shaping the three central challenges, including liminality, friction, failure, and risk;
2. Mobilize these concepts to inform practices and policies within the transplant setting, e.g. (a) assessments of adherence and strategies for engagement in clinical care (b) communication relating to consent to surgery, risks/benefits of transplant and options for end of life care (c) organ transplant advocacy, fundraising and research strategies.
This innovative project contrasts with conventional methods and opens possibilities for transplant medicine and transplant recipients by asking what new futures might materialize, if transplant medicine is imbricated with a critical stance that questions presuppositions about cure, futurity, livability and thriving.
Suze Berkhout, Kelly Fritsch (co-Principal Investigators)
Mary Bunch, Sean Lee, Cyn Rozeboom, Donna Stewart, Susan Abbey (co-investigators)
Josee Lynch, Kathleen Sheehan, and Ada Jaarsma (collaborators)
Dr. Bradly Necyk
Doctoral Research Assistants
Masters Research Assistants
Project Funding: New Frontiers Research Fund