Richards Rose
Department of Psychology, Stellenbosch University, Stellenbosch, South Africa.
Qual Health Res. 2008 Dec;18(12):1717-28. doi: 10.1177/1049732308325866.
The individual's experience of kidney failure, transplantation, and recovery is not as well documented as might be expected. Often it is written about by outsiders (medical practitioners, care providers, academics), whereas the insider's (patient's) expertise is occluded. This conforms to the experience of many people living with illness and disability. The rendering of people as other (not like the norm) comes at a cost to their humanity. People who are ill or disabled can themselves succumb to a way of writing that simplifies their experience and objectifies themselves. I consider what it means to tell the story of oneself against a background of illness autoethnography, my own story of growing up medicalized and living with end-stage renal disease. I identify three types of illness autoethnography, one of which creates a tension between researcher as agent and researcher as object of research, and compels the reader to constantly realign himself or herself.
个体肾衰竭、移植及康复的经历,其记录情况不如预期那般详尽。这类经历往往由局外人(医生、护理人员、学者)书写,而患者自身的专业见解却被忽视。这与许多患病和残疾人士的经历相符。将人们视为异类(与常人不同)是以牺牲他们的人性为代价的。患病或残疾的人自己也可能陷入一种简化自身经历并将自己客体化的写作方式。我思考了在疾病自传体研究的背景下讲述自己故事的意义,也就是我自己在医学化环境中成长并患有终末期肾病的故事。我确定了三种疾病自传体研究类型,其中一种在作为行动者的研究者和作为研究对象的研究者之间制造了张力,迫使读者不断重新定位自己。