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“The Devil is that disease” An ethnography of mental health stigma in Uganda Master thesis: MSc Social and Cultural Anthropology Department of Anthropology, GSSS, University of Amsterdam Supervisor: Dr. Eileen Moyer Second reader: Professor Ria Reis Third reader: J. Both Student: Charlotte Hawkins Student number: 11289430 E-Mail: [email protected] Date: 3rd August 2017 Word Count: 25,528 Ethics This study protocol was granted full approval by the Makerere University School of Social Sciences Research Ethics Committee (MAKSS REC) on 19th January 2017. I was granted affiliation with the Butabika-East London Link on 21st December 2016. Research activities at Fort Portal Regional Referral Hospital were approved by the Hospital Director, Dr. Olaro Charles. Related ethnographic film captured during a community health outreach project was approved by Dr. Mugali Richard, The Kabarole District Health Officer. All research participants gave informed consent to be involved in this study. Pseudonyms have been used or names omitted, except where approved by key contacts. Plagiarism Declaration I have read and understood the University of Amsterdam plagiarism policy [http://student.uva.nl/mcsa/az/item/plagiarism-and-fraud.html?f=plagiarism]. I declare that this assignment is entirely my own work, all sources have been properly acknowledged, and that I have not previously submitted this work, or any version of it, for assessment in any other paper. 1 Abstract This thesis explores the topic of mental health stigma in Uganda based on anthropological research conducted in psychiatric hospitals in Kampala and the western Kabarole District. The research sought insight into the determinants of mental health stigma in Uganda, in order to consider how it can be countered. In line with its etymology, stigma can be understood as the physical branding of social disgrace on minds, bodies and identities. The idea that stigma makes symbols tangible, and therefore ethnographically observable, prompted this research. The chosen fieldwork setting was of particular relevance to this enquiry, where the subject of mental illness occupies a conflicted space between the personal and communal, spirits and science, present and past. Based on extensive data from over 50 interviews, predominantly conducted amongst health workers, former mental health service users and their relatives, I argue that mental illness and the meanings attributed to it are mutually sustained. Everyday stories of how mental health stigma manifests and is mitigated are located within a wider socioeconomic context which neglects mentally ill people in Uganda. Traditional spiritual beliefs related to brain disorders can be shown to exacerbate stigma, particularly in the case of epilepsy, and also to overcome it. My fieldwork concluded with a two-week community mental health outreach programme that I helped to initiate and run; observations and interviews conducted alongside inform a discussion of the potential for health sensitisation to introduce new ideas about mental illness. Overall, this study exposed an ignored health need in the region, which I conclude is deserving of further research and advocacy. Keywords: stigma, mental health, Uganda, spirituality, sensitisation 2 Contents Introduction………………………………………………………………………………………. ……..... 4 - Methodology………………………………………………………………………………………. ...............7 - Theoretical Outline…………………………………………………………………………… ..............13 Chapter 1: Mental Health is Wealth……………………………………………………………. ................. 16 - Mental Health in Uganda…………………………………………………………………………………17 - Challenges in Mental Health Care………………………………………………………………………..... 20 - The Vicious Cycle…………………………………………………………………………………. ............ 23 Chapter 2: The Scars of History………………………………………………………………. ................... 29 - Mental Health Stigma in Uganda………………………………………………………………………….31 ‘Mulalu’, ‘Mob Justice’, ‘Fear’, ‘Service above Self’, ‘Rejection’, ‘Tying’ - Sensitisation……………………………………………………………………………………………...42 Chapter 3: Spirituality, Stigma and Healing…………………………………………………………….48 - Defining Spirituality in Uganda……………………………………………………………………. ............ 49 - Angry Ancestors and Blame…………………………………………………………………………… .... 55 - Epilepsy………………………………………………………………………………………………. ...... 59 - Spiritual Emergence………………………………………………………………………………… .......... 62 Conclusion………………………………………………………………………………………………...64 Appendix…………………………………………………………………………………………………..68 References……………………………………………………………………………………………… .............. 72 Acknowledgement………………………………………………………………………………………...77 3 INTRODUCTION “This world is not my home I'm just a passing through My treasures are laid up somewhere beyond the blue The angels beckon me from heaven's open door And I can't feel at home in this world anymore Oh lord you know I have no friend like you If heaven's not my home then lord what will I do The angels beckon me from heaven's open door And I can't feel at home in this world anymore” Jim Reeves, ‘This World is Not My Home’. I will first introduce you to Butabika, Uganda’s national psychiatric hospital, but I’m sure if you were to visit you would be as warmly welcomed as I was. The hospital sits at the top of one of Kampala’s many hills in a comparatively quiet suburb on the Eastern outskirts of the city. For the first two weeks of my fieldwork, I lived in a guesthouse near the entrance and conducted participatory observation at the hospital. When I arrived, the hospital water supply was sporadic thanks to a burst pipe nearby. Day 1, in an all-day meeting with peer support workers at the Butabika Recovery College, and only myself and another British visitor held our bottles in the sweltering heat. We began the meeting with prayer and people came and went throughout the day. Outside, patients wandered barefoot in green uniforms of varying condition and entirety, and waited without complaint for their millet porridge. Some people were inquisitive and others withdrawn. Visiting family reclined with their sick relatives in the shade of the leafy grounds. The corridors echoed with greetings, “Mzungo1 how are you? you are welcome”. Day 2 and I’m taken on a tour of the 550-bed hospital. First, the hushed men’s rehabilitation ward. One man paced the courtyard and another asked me for books. The spotless female convalescent ward with its rows of closely distributed metal beds. Deeply medicated women sit quietly amongst their drying uniforms in the fenced area outside. The overcrowded men’s admission ward, where a group fought over buckets of food at the entrance. A man emerged from the doorway with a pained expression and a vomit stained shirt. Another lay against the wall in the corridor, his elbow shielding his eyes. Many of the ‘service users’, as they are named by the hospital and will be referred to here, were intrigued by my arrival, came to greet and welcome me, circling me and shaking my hand. One man had to be punched twice before he released his grip on my arm. Loud dancehall music erupted from the Occupational Therapy ward. Inside, there were about forty green- 1 Bantu term for white people, which literally translated is “someone who wanders around aimlessly” http://swahilitime.blogspot.nl/2013/02/the-meaning-of-word-mzungu-maana-ya.html, 09.05 4 clad service users and about five nurses in immaculate pink uniforms and white caps. Most of the group were seated at the far end of the hall, with about ten dancing in the middle. I was introduced to the therapist who was playing the music. On Wednesdays it's music therapy, and people were taking turns to perform. Some of them seemed particularly reluctant to leave centre stage and implored me to dance with them. One young man, about my age, stood up and sang a painfully beautiful rendition of Jim Reeves’ ‘This World is Not My Home’, which I can still hear today. My friend Elizabeth, a former Butabika service user herself and now peer support worker and yoga instructor, later told me that he very rarely speaks. This song and the way he sang it spoke beyond words, evoking how it might sometimes feel to be mentally ill in Uganda. Hope, home and friendship lie only ‘beyond the blue’. I have begun with this as it tells a story of how I influenced my surroundings as I ‘wandered aimlessly’ through them, and how they seemed to me characterized by both strain and unity. As observed in the Occupational Therapy ward at Butabika, constraint imposed by mental illness, and prejudice towards it, was mitigated through everyday dialogue, collaboration and care. Consideration of how mental health stigma persists, despite the discomfort and opposition it promotes, forms the puzzle fundamental to this research. Drawing on the stories of mental health workers, service users, their relatives, and those of other key figures in the community, I will consider the overarching research question: ‘what sustains mental health stigma in Uganda, and how can it be countered?’. This question directed my enquiry into how discrimination towards mentally ill people in Uganda is maintained, and what is or can be enacted to redirect it. I initially proposed this question as I was intrigued by the idea that mental health stigma exposes the complex relationship between individuals and structures. This relationship is also of interest to the chosen social theorists outlined later in this chapter, and was touched upon by many of the Ugandans involved in my research; perhaps including the young man who finds himself no longer at home in this world. The research question was intentionally broad to allow for

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