Becoming a kidney transplant citizen: kidney transplantation, race and biological citizenship

Abstract

I conducted a four-month ethnographic fieldwork study to document the stories of thirteen post-kidney-transplant minority patients and three nephrologists at Boston Medical Center. My research explores how patients’ interactions with health professionals, medical regimens, dialysis treatments, and adaptation to living with transplanted kidneys constantly shape their identities and perceptual worlds.

Patients’ narratives highlighted the emotional struggles they encountered along the path of End-Stage Renal Disease, which unfolded as distinct experiences influenced by their varied backgrounds. The majority of my patient-participants lived on the verge of poverty, and in some cases, their insurance status caused delays in their being registered on the transplant waiting list, making them endure a long wait. Some patients were afraid of wearing short sleeves because they thought the scars on their arms from dialysis treatment would lead others to think they were gangsters.

Instantiations of various theories emerged from the saturated data and narrative analysis, from Bourdieu’s concept of habitus with regard to the process of how patients alter their consciousness through interactions with medicine to Foucault’s ideas of power relations and technologies of the self that address the issues of agency and power that influence the formation of patients’ identities. The intersection of these theoretical frameworks led me to develop the critical medical anthropological-oriented concept of biological citizenship.

This paper examines 1) the ways in which “race” interacts with the theoretical concept of biological citizenship and 2) the ways in which socioeconomic status and race tailor a kidney transplant patient’s illness experience, and related discourse.