An ethnography of adults living with aphasia in Khayelitsha.

Abstract

This thesis is concerned with the experience of aphasia in Khayelitsha, a township on the outskirts of Cape Town characterised by poverty, violence, limited resources and a culture and language that differs from the setting of most speech and language services in South Africa. It is based on three years of intermittent fieldwork that entailed participant observation of the everyday life of five adults living with aphasia and interviews with participants, kin and healthcare workers in various settings. Grounded in sociocultural theory, this thesis has aimed to provide an ethnographic account of cultural frameworks of interpretation of communication impairment following stroke and of the daily reality of life for adults living with aphasia in this setting. An exploration of causal notions in this setting provided interesting commentary on social and cultural processes and how people, caught up in these processes, search for meaning and for cure. Participants entertained plural notions of causation of aphasia and explored numerous therapeutic avenues. The wide variation in causal notions included biomedical causes, social and behavioural determinants, and the influences of supernatural powers, such as witches and ancestors. Similarly participants experienced aphasia through multiple healing systems, including traditional, biomedical and religious therapy options. All however seemed to be ambiguous sources of help. Whilst encounters with the health system presented serious challenges to participants, traditional and religious avenues for help were obscured by a burgeoning and not always ethical open market offering miracle cures. An articulation of the circumstances of this group of adults provided further commentary on the influence of the social context on aphasia. In a context where sociopolitical processes have had a disintegrating effect on social cohesion, questions of support, care and security were of primary concern. Prejudices towards the elderly and women were more acutely felt and vulnerability, isolation, insecurity and fluidity of circumstance emerged as overarching themes. The central argument in this thesis is that the genesis of these experiences can be found in contextual factors in Khayelitsha, such as poverty, inequality, urbanisation and changing cultural paradigms. These emerging themes highlight the disjunctions between the medical alignment of the discipline of speech language therapy in South Africa and the capacity for socially-engaged practice. They also highlight the socio-cultural complexity of the experience of aphasia, specifically the influences of culture and poverty. There is thus theoretical and clinical relevance in using anthropological objectives to explore the world of the adult living with aphasia and the interface between context and service provision. Interventions and healthcare communications that will make a meaningful difference to adults with aphasia in a setting such as Khayelitsha are proposed.