Occupations of citizenship: The missing layer in empowered engagement between rural people with disabilities and primary healthcare workers in South Africa Kate Sherry Thesis presented in fulfilment of the requirements for the degree of Doctor of Philosophy at University of Cape Town University of Cape Town School of Public Health and Family Medicine Faculty of Health Sciences Supervisor: Professor Steve Reid Co-supervisor: Associate Professor Madeleine Duncan 15 February 2016 The copyright of this thesis vests in the author. No quotation from it or information derived from it is to be published without full acknowledgement of the source. The thesis is to be used for private study or non- commercial research purposes only. Published by the University of Cape Town (UCT) in terms of the non-exclusive license granted to UCT by the author. University of Cape Town “Baqgithisa itole kunina” They allow the calf to pass through the gate to its mother. “’Itole’ is the calf of a cow. At night you separate the calf and cow, so that you can milk the cow in the morning. Then in the morning, if you don’t want to milk the cow, you just let the calf go straight to the mother so he can suckle. Ukugqithisa means to allow him to pass, to allow the calf to go to its mother… So you are there to milk the cow, but instead you are just letting the calf through, not milking. You look like you are going to do your job, but you are not actually doing it.” - Xaks Dabula (co-researcher) i Abstract Background: People with disabilities in impoverished rural areas of South Africa struggle to access healthcare, despite the right to health established by the Constitution and the United Nations Convention on the Rights of Persons with Disabilities. Health system challenges and structural conditions of poverty impact this group in specific ways, with implications for households and communities that are not well understood. To date, health systems research and design have largely omitted disability considerations. Primary health care (PHC) calls for community engagement with health systems, to voice local needs, influence service provision, and hold providers to account. However, current models of community engagement rely on certain political, social and economic conditions, which are not present for rural people with disabilities in South Africa. Purpose: This study sought to understand the existing engagement between rural people with disabilities and healthcare workers in the PHC interface, and thus to theorise how this could be strengthened for more responsive and equitable services. Methods: A qualitative, ethnographic embedded case study was undertaken with eleven people with disabilities and their households in a rural village in the Eastern Cape Province. We followed their narratives of engaging with PHC services over time, applying an occupational lens, framed within the capabilities approach, to understand how these stories unfolded in the context of their lifeworld. Findings: The resource-intensive process of seeking healthcare often culminated in a formulaic encounter with healthcare workers (termed ‘futile reproduction’), which failed to engage with the complex needs of people with disabilities. Over time, this created a cycle of ‘capability suck’. Healthcare seekers, constrained from challenging unsatisfactory service, adopted a cautious approach of ‘quiet autonomy’. By contrast, where healthcare workers adopted a reciprocal, mutually respectful style of engagement, (‘collaborating to heal’), encounters could be startlingly effective and empowering, leading to ‘capability release’. Conclusions Relational dimensions of healthcare proved especially powerful for rural people with disabilities. PHC reforms in South Africa could strengthen engagement by bringing care into the rural life context, incorporating longitudinal relationships into service design, and including disability training and rehabilitation workers in PHC teams. ii Key words Capabilities Disability Empowered engagement Health systems Occupations Primary health care Plagiarism declaration I, Kate Sherry, hereby declare that the work on which this thesis is based is my original work (except where acknowledgements indicate otherwise) and that neither the whole work nor any part of it has been, is being, or is to be submitted for another degree in this or any other university. I authorise the University to reproduce for the purpose of research either the whole or any portion of the contents in any manner whatsoever. Signature: Date: 15th February 2016 iii Acknowledgments This doctoral research was only possible through help and support from a large number of sources: To the people of Kwabisi, our participants, their neighbours, and the research advisory group: my heartfelt gratitude for your willingness to be together with me, and to share your stories. Special thanks to my Gogo, chief of Kwabisi and my mother, host and sponsor in the location. To Xaks Dabula, my co-researcher, teacher and guide in Kwabisi: my deepest gratitude for your hard work, patience, and incredible skill in translating this world for me, and for your teaching me, so gently, how to behave myself in it. This truly would have been impossible without you. To my supervisors, Steve Reid and Madie Duncan: Your wisdom, patience, passion for rural health and enthusiasm for this project have been my lifeline, and it has been a joy to share this journey with you. I hope there will be many more. For financial support, my deep appreciation is due to the following: The David and Elaine Potter Foundation NRF/DAAD Oppenheimer Memorial Trust The African Doctoral Dissertation Research Fellowship program, African Population Health Research Centre (co-funded by DFID) Opinions expressed and conclusions arrived at are those of the author and are not necessarily to be attributed to the above funders. To my parents: my unending gratitude for your support through the last four years, both practical and personal – from a roof over my head while I raised funding and wrote my proposal, to the meticulous proof-reading of the penultimate manuscript. All remaining errors are my own. My thanks are due to the Eastern Cape Department of Health, for permission to conduct this study, and to the district and local managers for their support and cooperation. To the healthcare workers who serve the people of Kwabisi, often in impossible conditions, my respect and gratitude for your time and insight. I am extremely grateful to Ton Dietz, Mayke Kaag and colleagues at the African Studies Centre in Leiden, Netherlands, for hosting me during a three-month study visit, which was generously funded by Stichting Studiefonds (SSF). The preparation of my doctoral proposal was greatly assisted by my classmates and teachers in the Research Capacity Initiative of the South Africa Netherlands Partnership for Alternatives in Development (SANPAD). Finally, my thanks for this opportunity and all others to our God, in whom we have hope that change is possible. “The eyes of the Lord are on the righteous, and his ears are attentive to their cry… The Lord works righteousness and justice for all the oppressed” (Ps 34:15; Ps 103:6) iv Contents Abstract ................................................................................................................................................... ii Background: ........................................................................................................................................ ii Purpose: .............................................................................................................................................. ii Methods: ............................................................................................................................................. ii Findings: .............................................................................................................................................. ii Conclusions ......................................................................................................................................... ii Key words ............................................................................................................................................... iii Plagiarism declaration ............................................................................................................................ iii Acknowledgments .................................................................................................................................. iv Contents .................................................................................................................................................. v List of figures and tables ........................................................................................................................ ix Abbreviations/acronyms ......................................................................................................................... x Definition of terms ................................................................................................................................. xi Chapter 1: Introduction .......................................................................................................................... 1 1.1. Introduction ............................................................................................................................ 1 1.2. Positioning the researcher .....................................................................................................