You look very well for a transplant : autoethnographic narrative and identity in chronic kidney disease, kidney failure and the life post-transplant

[摘要] ENGLISH ABSTRACT: Despite the high prevalence of chronic kidney disease, renal narratives are under-reported.Much of what is written on kidney failure is written by health care professionals for health careprofessionals and about patients. While medical experts and health care practitioners haveone type of knowledge, their patients have another type of knowledge acquired through theirexperience of their own condition. From within the disability and patients' rights movementsurgent calls have been made for the authentic voices of disabled people and patients to beheard without the mediation of professional lenses. In response to this my dissertationcombines personal and academic writing to explore my own experience of end-stage renaldisease, dialysis, transplantation and the life after transplant.I have used autoethnography as a methodology. Autoethnography is a relatively new,somewhat postmodern form of inquiry that developed from the reflexive turn in anthropologyand narrative studies in the latter part of the twentieth century. It is very useful in writing aboutthe experience of illness and reflecting on illness narratives because, in autoethnographicwriting, the observer and observed, the narrator and narrated, insider and outsider are thesame person. This allows scope for exploring the problematics of representation and forfinding alternatives to already existing ways of telling certain stories.Engaging with autoethnography's postmodern aspects has allowed me to conceptualizeexperiences that, until I undertook this research, I have never been able to articulate, becausethe traditional (static) illness narrative forms did not speak to my experience or myunderstanding of my condition. The central issue in my dissertation lies in the question: Howdo I tell the story of chronic illness once I have had an organ transplant? Flowing from this area number of sub-issues: Can my story change? How do I describe myself: The well, the ill, theimpaired, the disabled, the afflicted? Do I describe myself living in no man's land? In mynarrative, do I oscillate between being well and ill, or do I occupy another territory entirely?And if I do, what is it?My study shows that writing the story (or stories) of chronic kidney disease is complex,nuanced and dynamic and that, far from being an extended liminal experience, kidney diseaseis littoral. This distinction is important in coming to narrative terms with an identity that is notdamaged so much as different.Through this I hope to demonstrate to both outsiders and insiders, who often submit tonarratives that are forced on them, that more satisfying alternatives can be found.

[发布机构] Stellenbosch University