SAYING THE WORD: VOICE AND SILENCE IN AN AUTOETHNOGRAPHY ABOUT CHRONIC ILLNESS

Abstract

People living with chronic illness experience impairment in variousways, not the least of which is how they are sometimes marginalised bythe people with whom they interact. Over the last few decades, as socialscience research has moved away from the biomedical model, researchmethodologies have been developed to allow the voices of people withillness or disabilities to be heard and not only to be represented byothers. However, these methodologies may not go as far in redressingpower imbalances as was hoped, and participants' voices are often stillmediated and subjugated to the researcher's requirements. As a personwho has lived with a chronic condition all my life, I am concerned abouthow I am heard and by whom, as this has often affected myself-perception and sometimes even my safety. I am also concerned aboutdoing violence to those about whom I speak and disempowering themfurther. My doctoral research concerned the problematic of writing aboutmy own experience of a chronic illness. I chose a methodology,autoethnography, that allowed me to write solely about my ownexperience. In so doing, I was able to consider the complexity of my ownacademic and narrative voices, individually and in combination. In thispaper I explore the methodological and epistemological concerns aroundmy decision to use autoethnography, as well as the sometimes surprisingissues I navigated when doing so. One of these issues was thejuxtapositioning of different types of texts I had written. Inisolation, some of the texts show a clear influence of the verydiscourses to which I was trying to provide counter-narratives. Whenread together with other texts, they reveal a complex web of paradoxes,tensions, and silences, which allowed me to generate new narratives andto question assumptions - my own and other people's.