“The Devil is that disease” : an ethnography of mental health stigma in Uganda

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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: charlottehawkins910@gmail.com Date: 3rd August 2017

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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

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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.

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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”}

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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 potential issues of access and relevance in a field setting that was new to me; both being unprecedented, the question remains broad to accommodate the far-reaching associations made by my participants in relation to the subject of mental health stigma in Uganda.

I primarily based myself in psychiatric hospitals so I could conduct my research with those who are closely affected by mental health stigma in Uganda. After two weeks at Butabika, I travelled to Fort Portal, six hours west of the capital, where I was to be based for the remainder of my three months’ fieldwork. Fort Portal is in the Rwenzori Region, a rural town with bustling markets, the horizon framed by matoke trees and the Mountains of the Moon. Most of my time was spent in the mental health unit of the Regional Referral Hospital, which is intended to serve the seven surrounding districts (Kabarole, Kyenjojo, Kyegegwa,

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Kamwenge, Kasese, Bundibugyo and Ntoroko) and some of eastern Congo. According to the 2014 census, these districts have a total population over 2.2 million, and span over 11,000 square km2 _{(see map below).}

This location afforded me insight into perspectives on mental illness across a far-reaching and largely rural area of western Uganda. The hospital itself is large, busy and well maintained, with new wards under

construction and a large private wing. The mental health unit sits at some distance from the general hospital and is much smaller and more run down. It has a bed capacity of 45 inpatients and runs a busy outpatient clinic, currently treating over 930 people a month. Since it was founded in 2005 by Father Kabura, a priest with a PhD in psychology, and Martin Ibanda, the psychiatric clinical officer (PCO) in charge of the unit, the staff has increased from 2 to 24, and patient intake continues to increase. As you can see in the photograph below, patients and family members often pass their time on these steps outside. I would often sit there in between interviews, and these conversations informed my research. In what follows, I elucidate further on the fieldwork setting and how it influenced my methodological approach.

Map of Uganda used by hospital social worker. Fort Portal Mental Health Unit.

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Methodology

My time living and working at Butabika was made possible by a collaboration with the Butabika East London Link3_{, who run the Butabika Recovery College. Here, as part of the ‘Brain Gain’ project, former mental}

health service users are trained to offer guidance to Butabika service users, to help them with their recovery as ‘peer support workers’ (PSWs). This organisation is built on the Heartsounds4 _{peer support network,}

founded by Joseph Atukunda. Joseph was my first contact in Uganda, and his BBC documentary ‘My Mad World’5 _{initially introduced me to the problem of mental health stigma in Uganda. As in the photographs}

below, the peer support workers meet at the Recovery College to learn about psychological methods such as cognitive behavioural therapy (CBT), teach service users healing pursuits such as yoga, and to discuss themes of recovery such as spirituality, stigma and empowerment. They are also advocates amongst communities, proving that recovery is possible, and that mentally ill people can become employable again. As one peer put it in a recent interview: “they can be useful in the future!”6_{. Participatory observation in training sessions and}

meetings was an invaluable way for me to settle into my research and to learn how mental health, life and the universe are discussed in Uganda. As outlined in the appendix, ‘mental illnesses referred to in this thesis will cover a broad range of brain disorders as it did in the field, including: depression, mania, addiction, epilepsy, HIV/AIDS induced psychosis, schizophrenia, anxiety, dementia and ‘others’. I also returned to Butabika towards the end of my fieldwork to attend a ‘spirituality training’ session, and the second annual Child and Adolescent Mental Health (CAMH) conference in Kampala.

Butabika Recovery Training, CBT, 18th January 2017. Butabika Recovery College, morning yoga, 20th _{January 2017.}

3 _{http://www.butabikaeastlondon.com/ accessed 14.11.2016}

4 _{http://www.mhinnovation.net/innovations/heartsounds-peer-support, accessed 30.04.17} 5 _{https://www.youtube.com/watch?v=e5d8bhMf8xY, 18.52. Accessed 04.11.16.}

6_{http://www.thet.org/health-partnership-scheme/resources/case-studies-stories/case-stories/don2019t-they-throw-rocks-at-}

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My initial experiences at Butabika prepared me to start interviewing when I arrived in Fort Portal. My first meeting was with ‘in-charge’ Martin Ibanda. He took me to gain permission from the Hospital Director, and introduced me to some of the health workers. I’ve included photographs below taken inside the Fort Portal mental health unit. After conducting an early interview with therapist Scovia, she offered to be my translator for the local language, Rutooro, when needed; the majority of interviews (37) were conducted in English, the ‘official language’ in Uganda. Scovia also helped me to frame my research questions in ways that would be understood in Fort Portal. Alongside ongoing participatory observation, sitting in waiting rooms, wards and meetings, I conducted 49 semi-structured interviews with health workers, former service users, their relatives and people across the community including religious leaders and politicians. I also conducted 10 short, structured interviews for film footage captured towards the end of my fieldwork. Interviewees by population are outlined below.

Population Interviews Other methods

Mental health workers 7

Physical health workers 4 Focus Groups.

Attendant relatives 5 Focus Groups.

(Recovered) service users / PSWs 14 Life Histories. Focus Groups.

Hospital administration 1

Social Worker 1

Community e.g. market holders, boda drivers7 7 Focus Groups.

Traditional Healers 2

Founder of Fort Portal Institute of Nurses (FINS) 1

Politicians 2

Church leaders 2

Media 2

Local counselling institute 1

Filmed interviews 10 Short, structured interviews.

Total 59

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Inside the mental health unit. Patient folders at the Fort Portal mental health unit.

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The Ugandan Ministry of Health and the Fort Portal Regional Referral Hospital are working within strict budgets; as the Hospital Director told me, “we do our best within our limits”. During our first meeting, Martin outlined the key challenges in delivering mental health care in the region. If possible, patients need to be admitted with ‘attendant relatives’, who act as their caregivers. Within the first hour I spent in his office, he saw seven people, some collecting drugs for themselves and others for their families. They had arrived that day to find that the quarterly supply of state drugs had run out until the end of the month. Martin said he had never had such a worrying shortage before. He was most concerned about the lack of antiepileptic and emergency psychotic drugs. “What are we supposed to do when they bring in a violent person who is tied up with ropes? It is very dangerous not to have the drugs.” He interrupted one session with a female patient, an elderly lady, to tell me that this was a difficult case; the drugs she needed were not available and she could not afford them alongside bringing up her many grandchildren.

Many people struggle to afford the transport to Fort Portal from their home villages and the funding for community outreach has run out. During my daily visits to the hospital, people regularly appealed to me for help with food, water and medicine. Seeing the many difficulties faced by the hospital and visiting patients, I felt both compelled and reluctant to help. Given unequal access to healthcare, interventions which seek to engage power structures and external resources are ‘critical’ in Uganda, but can of course also perpetuate inequalities (Musinguzi et al, 2017: 4). I was torn, so sought the advice of the UK psychiatrist who had chaired the Butabika Link partnership. He recommended that I crowdsource money online amongst family, friends and colleagues. Over 4 weeks, I raised $780, which was used to buy basic supplies and medicine with the hospital social worker. With the surplus, Martin and I organised a 6-day outreach programme to nearby village health centres (Bukuku, Kibiito and Kida), where hospital staff delivered a two-hour presentation about mental health in Rutooro to around 50 people, followed by the treatment of at least 20 patients. In an attempt to raise awareness and further funds, with permission from the Kabarole District Health Office and help from Ugandan filmmakers, we captured footage of the health sensitisation and some short interviews. Doctors and nurses from the health centres and visiting patient relatives told their stories and discussed the current gaps in mental health services in the region. We plan to use this short film to raise awareness amongst relevant partners who might be willing to fund an ongoing community mental health outreach programme in the region. I’ve included some stills and key quotes in the appendix.

During the presentations, which are photographed below, the health workers explained that the hospital can help with psychological problems. They also addressed some harmful ideas about mental illness, for example

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explaining that epilepsy is not contagious. Prior to the outreach, attendance at the Fort Portal mental health unit in January was 628 and in February was 642; after the outreach, in March and April, monthly attendance was 936 and 953 respectively. See figures 1 and 2 in the appendix, which have a breakdown of patients by condition taken from Martin’s report on the project. He concludes this report: “Based on the increased number of patients seen in the months of March and April 2017, it is clear that Community Mental Health Outreaches and sensitisation are very crucial and need to be addressed. This will help communities to access mental health services and create awareness about mental health and its care services.” I conducted short interviews after each presentation; most people said they found it useful, that they had learned something and would appreciate more of the same in the future.

In the following chapter, I will discuss my preliminary observations of the health sensitisation which also challenge this surface level response. The impact of this programme on the mental health and perceptions of the communities would need follow-up qualitative assessment. The outreach programme, the hospital’s preferred method for intervention, proved that sensitisation can have a social impact but can also have unintended consequences. Regardless, response so far does suggest that this approach is deserving of further research, which could offer better answers to more practical concerns related to stigma intervention; is it possible to intervene on trajectories of damaging inequalities, to alleviate some of the harshness implemented by social ideas about mental illness? Does an ethnographic understanding of what sustains these ideas inform potential strategies to change them?

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As was evident during my fieldwork, access to mental healthcare is a challenge in Uganda, with people in rural areas struggling to reach health facilities. This can in part be attributed to Uganda’s tiered healthcare system: at the top are the national referral hospitals (Butabika), followed by regional referral hospitals (Fort Portal), general hospitals and health centre (HC) IVs (Bukuku, Kibiito), HCIIIs, HCIIs and Village Health Teams (see figure below). There are also private and NGO funded health centres, such as Kida Hospital. Resources become increasingly sparse as you descend the hierarchy, or as you leave the urban centres.

(Musinguzi et al, 2017: 3)

Outreach day 3, Kibiito Health Centre IV. Outreach day 2, Kida Hospital.

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Theoretical Outline

Mental health stigma is considered a global public health risk, and is therefore a priority of the World Health Organisation.8 _{There has been much inter-disciplinary research into the causes and manifestations of mental}

health stigma, and potential interventions (Link & Phelan, 2001; Weiss, 2007; Peters et al, 2014; Smith, 2013). This work owes its conceptual foundations to Goffman’s definition of stigma as the symbolic product of historical ideas, with discrediting effects on the individual (1963). Stigma towards psychiatric disorders in Uganda imposes tangible material effects on the relationship between individuals and their surrounding structures. Relevant theories regarding the mediation between the two as the cause of social continuity and alteration inform my empirical observations. The meanings which mediate between personal and social realities related to mental health, as evident in observed expressions and dialogues, are both the object and tool of this ethnography.

The personal physicality of structural inequalities in this study is further exposed in consideration of mental illness itself. In Flora Veit-Wild’s analysis of ‘writing madness’ in African literature, she states that ‘madness’ is at “the extreme” (2006: 2) border of the social and the self, by definition, a fear-based ‘taboo’. Despite being painfully experienced, mental illness escapes more concrete definition as “what or who is considered sane or insane is based on cultural assumptions” (ibid, 22). Diagnoses discussed here are therefore at once

questionable but also inherently correct, in that they are true because they are believed to be. In the words of my interviewees, I will show that an individual's experience of mental illness not only owes its definition to its cultural context, but is also the result of it. Veit-Wild agrees, and observes “[t]he traumas, derangement and suffering that political and mental colonisation have engendered” (ibid., 4). Even neurological disorders such as epilepsy, which will be discussed in depth, can be initiated by social context, and worsened by the meanings attached to it.

According to this definition of mental illness, there is a circularity between taboo and digression. This was certainly evident in my findings, which suggest that the social symbols surrounding mental illness are reinforced by their outcomes. People treated with hostility respond as such, and vice versa; institutional exclusion and social isolation can exacerbate the effects of the ‘discrediting’ health problem; self-stigma can act as a barrier to help-seeking and recovery (Weiss, 2007: 281). Further, mental illness and stigma also often exist in a cyclical relationship with poverty (Link & Phelan, 2001: 363), notably so in Uganda (Ssebunya, 2009:

8_{http://www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/priority-areas/stigma-and-}

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7). These iterative, perpetual symbolic patterns fit within Bourdieu’s conception of social reproduction (1991). For Bourdieu (1991), language both explains and embodies the movement of social structures, which are ‘formed and reformed’ (Ibid: 48) in symbolic, everyday rituals. Through language, and subsequent

dialogues, dominant ideas are created and sustained, mapped from political institutions onto individual minds and across generations. Using the example of the French Revolution, Bourdieu describes the struggle for power as “a struggle for symbolic power in which what was at stake was the formation and reformation of mental structures” (1991: 47). The dominant order is internally inscribed and reiterated. This dialogic,

inherited pattern of meaning is identifiable even in Bourdieu’s own language, for example in the frequent use of these elegant paradoxes of continuity and change; ‘formation and reformation’, ‘production and

reproduction’, ‘assimilation and dissimilation’. These pairings acknowledge that alteration is the only form of change, that the previous form remains essentially present. Even in the inversion of meaning the influence of the prior remains, so ‘reform’ can never be total.

The enclosed nature of Bourdieu’s concept of ‘reproduction’ has been expanded by Ortner to accommodate the possibility of ‘alternatives’ and contradictions in the everyday (1989). Ortner outlines three forms of practice, which will categorise the empirical observations outlined in this thesis. First, routine practice through with structures are internalized and reproduced (ibid., 194). Mental illness could fit within this category, as a routine response to certain social conditions which reproduces the dominant order. Second, intentional yet structurally constituted action (ibid., 195). This form of practice will be most evident in examples of interactions which negotiate the structural limitations around mental illness, but are also dictated by them. De Bruijn’s analysis of ‘Strength beyond structure: social and historical trajectories of agency in Africa’ (2001) will also supplement my observations of ‘intentional’ practice related to economic constraint. Third, ‘non-routine’ practice, which takes the form of routine practice but with new content, and can make ‘alternatives visible’ (ibid., 201). Health sensitisation can be assigned to this ‘non-routine’ category. It can also bring about “unintended outcomes” (Ahearn, 2001: 119) which ‘reproduce’ the dominant order, and

therefore could also be interpreted as ‘routine’ or ‘intentional’ action.

Similarly, spiritual beliefs and practices can be defined within more than one category of practice. Spirituality in Uganda can be shown to internalise and reproduce the status quo, or to orientate towards goals which are socio-culturally mediated. It can also be empirically understood as a symbolic platform at ‘the borderlines’ alongside mental illness, ‘betwixt and between’ (Turner, 1964: 55) individuals and structures that can ‘bring alternatives into being’ (Ortner, 1989: 201). The capacity for spiritual beliefs to both sustain and counter mental health stigma are thus considered in the third chapter. This is where the title citation, ‘the Devil is that

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disease’, is found. This phrase not only demonstrates the symbolic strangeness and social paranoia that defines mental illness in Uganda; it also equates mental illness with the meanings attached to it, an essentially parallel relationship shown to underpin stigma throughout this thesis. This particularly applies to epilepsy, which often symbolises ‘polluting liminality’ (Veit-Wild, 2006: 110) between human and superhuman spheres, and is treated accordingly.

In asking the question ‘what sustains stigma, and how can it be countered?’, I’m also asking ‘what is the trajectory of damaging inequalities, how are they reproduced, and can they be redirected?’. All chosen theories propose that structural inequalities are sustained and countered by their capacity to be internalised and

mitigated by individuals. Despite the exposed lens to this relationship afforded by a study of mental health stigma, there is an essential empirical distance which deserves acknowledgement. On the title page, I’ve included a photograph taken from my bedroom window at the Butabika guest house. Outside, a service user sits in contemplation at a far corner of the hospital grounds. This image is relevant to the consideration of my position as a researcher about mental health in Uganda. Despite medium-term geographic closeness, I was always an outsider, or an ‘insider looking out’; I lived in the guesthouse, not in the hospital. From this position, I could only try to observe ‘internalised and externalised’ structures in relation to disorders of the mind and therefore could only provide a “tentative rather than conclusive” (Carrithers, 1990: 263) answer to the research question. My pursuit was not scientific, but it was valid. During one health sensitisation, a young woman asked, “if medicine can treat mental illness, why is there not a machine that can diagnose us? Why do we have to tell stories?” Words and theories are currently the best tool we have for considering experiences related to mental health. This justifies an ethnographic exploration of the issue, from the ground up.

In the first chapter, I expand on why the Ugandan context is of particular relevance to this enquiry. This will draw on a meta-analysis interview excerpts, historical information and regional statistics to demonstrate evidence of the structural neglect of mentally ill people in Uganda. I will show the ways that mental illness manifests socially, disorders of the mind representative of past and present disorders in ‘this world’. In chapter two, I outline the realities of mental health stigma that I encountered during my fieldwork. This will show how mental illness and discrimination towards it are negotiated through dialogue, such as health

sensitisation. The third chapter focuses on spiritual beliefs and practices in relation to mental and neurological illness, which I argue have the potential both to reinforce and challenge stigmatising norms. I conclude that mental health stigma in Uganda is deserving of further research and outline potential ideas for intervention.

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9 _{http://www.butabikahospital.com, accessed 04.06.2017}

CHAPTER 1: Mental Health is Wealth

In this chapter, I show how global inequalities promote the conditions responsible for some incidence of mental illness in Uganda. As stated on the above Butabika website logo, “mental health is wealth”9_{. These}

structures also dictate that mental health care is not operating at the standard that health workers would hope to deliver. Whilst there is potential scope to counter stigma in the micro-level interactions discussed

throughout the thesis, economic constraint often ultimately prevents the realisation of real change: mentally ill people, when left untreated, are exposed to stigma. This understanding of the relationship between the

economy and stigma will contribute to the overall research question by asking: in what ways do socio-economic structures both sustain and reflect mental illness and stigma towards it? I will first outline the Ugandan context as it pertains to mental health. I will then draw on my findings in relation to what mental health theorists in Uganda have described as a “vicious cycle” (Ssebunya et al, 2009: 2) between mental illness, poverty and stigma. Many interviewees traced mental illness to the restricted ability to personally mediate conditions of economic adversity. Finally, I argue that economic challenges in mental health care are representative of the structural neglect of mentally ill people in Uganda, which underpins and sustains stigma. I would like to draw on the following quote from Bourdieu, which I feel aptly represents this economic enclosure:

“But what’s social is economic. There’s nothing which lies outside of this enlarged economy. Sadness, joy, happiness, taking pleasure in life.... All of that pertains to economics…. This way of running the economy has terrible effects which are said to be secondary but are in fact primary when they concern public health, physical and mental health...personal sanity, for example alcoholism which is a social phenomenon. I think all these measures which make the

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stock market soar...will be paid for by certain people and eventually by the collectivity.”10

Here, Bourdieu directly links individual mind and enacted perceptions with broad processes, problems in ‘personal sanity’ resulting from the global forces of the all-encompassing neoliberal economy. The analysis to follow will show that these ‘measures’ are being paid for by certain people in Uganda.

Mental Health in Uganda

Uganda’s past is marred by colonial rule, civil tyrannies and insurgencies, disease and economic hardship. Historian Andrew Roberts states in ‘The Cambridge History of East Africa’ that at the turn of the last century, “British rule was mainly imposed by force” (Roberts, 1986: 655), and with it came unjust taxation, disease, famine and world wars (ibid.). After independence, this violence continued with the atrocities of Amin’s reign and subsequent Civil Wars. As Mbembe, theorist of the African ‘postcolony’, puts it: “the question of the violence of tyranny was already posed to Africans by their remote and their recent past, a past slow to end” (2001: 372). How is this terminal question answered? Father Kabura, a psychological counsellor and Priest in Fort Portal, feels that this past is what has caused psychosocial problems amongst many Ugandans today (Kabura, 2002: iv). My friend Elizabeth told me that ‘the moment of my research’ was one of “really intergenerational trauma”, unresolved emotional confusion that has resulted from many years of war and instability, passed from parents to their children: “[t]hey grow up in the war, and then they give birth to you and then they pass on those mixed emotions. And then you also pass it on too. So now we are here.”

As will be expanded later in this chapter, Uganda’s socio-economic context, which can similarly be traced to ‘remote and recent’ “alien rule” (Roberts, 1986: 661), can also provoke a traumatised response. Uganda is classed by the World Bank as a low-income country11 _{and is currently the 25th financially poorest in the}

world12_{. Whilst the UN remarks on significant progress made in the country’s recent development}13_{, the}

struggle for food, land, medicine and school fees dominated many of the conversations I had during my fieldwork. The World Bank poverty assessment14 _{similarly notes that whilst poverty rates have decreased}

from 57% in 1993 to 20% in 2013, inequality is rising and “even after two decades of progress, poverty is

10 _{(Bourdieu, ‘La Sociologie est un sport de combat’, 2002) https://www.youtube.com/watch?v=2siX21Jnct4#t=284.102817,}

accessed 29.05.17

11 _{http://data.worldbank.org/?locations=UG-XM, accessed 26.05.17}

12 _{https://www.gfmag.com/global-data/economic-data/worlds-richest-and-poorest-countries, accessed 26.05.17} 13 _{http://www.undp.org/content/dam/uganda/docs/Uganda%20UNDAF%202016-2020.pdf, accessed 29.05.17}

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still widespread” (2016, XV). The socio-economic situation continues to be hindered by what USAID emphatically describes as “a demographic tsunami”15_{. Population growth in Uganda is the fastest in the}

world at 3.6%16_{, with a 2012 report showing that 78% of the population are under the age of 30}17_{, and the}

2016 census finding youth unemployment at 83%18_{. Epidemiology often determines that poverty}

correlates with higher rates of disease (Lock, 2002: 195). The World Health Organisation cite various studies which confirm this relationship between poverty and mental ill health19_{. The stage is therefore set}

for further systemic and psychological instability.

In healthcare, as in much of the Ugandan economy, there is a need for international development aid (Ndikumana & Nannyonjo 2007, ref Vorholter, 2012: 287). This means that donors dictate where the money is spent, seemingly to the detriment of mental health services. Towards the end of my fieldwork, I went to meet Vincent, the Founder of the Fort Portal Institute for Nursing. He had extensive knowledge and judgement of the Ugandan healthcare system, and an emphatic way of telling stories; many of his animated imitations will later be used to illustrate the community perspective. Regarding international aid, he explained that, “what donors feel should be addressed is what is addressed...nobody thinks about mental people”. International priorities favour physical over mental health care, which is particularly evident in relation to HIV. In Uganda, the swift and practical response to the epidemic has been

celebrated (Epstein, 2007) but rates continue to fluctuate. The most recent statistics state that 7% of the national population are HIV positive, and 11% in the Kabarole District20_{. At Fort Portal Hospital,}

physical care for those with HIV/Aids is funded by USAid/Sustain.21 _{This funding ignores the healthcare}

of widespread psychological stress resulting from HIV (Mugisha, 2011b: 625), in response to organic factors, ‘HIV induced psychosis’ or neurologic complications such as epilepsy, or social stress and grief. Mental health care is instead reliant on sporadic state resources. This funding disparity between

psychological and physical healthcare highlights institutional stigma towards mental illness on a global scale. Father Kabura agrees that this distinction between physical and mental health care is damaging, “we cannot separate them, the body and the mind have to work together, we cannot disregard the impact of malaria on mental illness or HIV, they certainly affect each other, as other factors in society.” Many mental health workers I spoke with were frustrated by the shortages resulting from distant decisions, and felt that their work “doesn’t attract attention because it doesn’t kill like HIV”.

15 _{https://www.usaid.gov/uganda, accessed 25.05.17} 16 _{http://www.worldwatch.org/node/4525, accessed 20.03.17} 17 _{http://www.newvision.co.ug/new_vision/news/1311368/uganda-population-world, accessed 20.03.17} 18 _{http://www.newvision.co.ug/new_vision/news/1420713/census-unemployment-biting-hard, accessed 20.03.17} 19 _{http://www.who.int/mental_health/policy/development/1_Breakingviciouscycle_Infosheet.pdf, accessed 26.05.17} 20 _{http://www.newvision.co.ug/new_vision/news/1429615/kabarole-hiv-prevalence-rises, accessed 04.04.2017} 21 _{http://sustainuganda.org/content/fort-portal-regional-referral-hospital, accessed 25.05.17}

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Uganda has the 17th highest suicide rate worldwide.22 _{The World Health Organisation estimate that there}

are 2.2 million people affected by mental, neurological and substance use disorders in Uganda, with only 20% of them able to access care.23 _{In the Kabarole District, a 2002 survey of 384 households identified 99}

with a mentally ill person, leading them to estimate that 31% of the population are suffering with mental illness (Kasoro, 2002: 9). Whilst the sample is limited, and mental illness difficult to determine statistically, it suggests that it is as endemic as it is felt to be by many of the people involved in my research.

Regardless, as stated by one Doctor at Kibiito Health Centre IV, “people think health is just absence of death and disease. But health is about the complete well-being of someone”.

Despite the prevalence of mental problems, and their contextual foundations, mental health stigma is institutionally entrenched in Uganda, as evident in the official languages of policy and public debate. Whilst these discourses are distinct from everyday exchanges, they have the potential to legitimise the negative historical connotations in part responsible for the lived realities of stigma in Uganda today. Despite updated international frameworks, unpublished reform bills and continued advocacy by various human rights bodies, the largely ignored 1964 Mental Health Act remains in place in Uganda (Nyombi, 2014: 1). The Ugandan Parliament’s “myopic” (ibid.) response to appeals for change reflects an institutional disregard towards mentally ill people in Uganda. The Act describes mentally ill people as ‘imbeciles’, ‘lunatics’ and ‘idiots’ (ibid.: 5)’, in line with the 1938 version drafted during British colonial rule. These outdated names suggest that being mentally ill is indicative of an abnormal lack of intelligence, useless eccentricity or extreme foolishness, deserving of corrective incarceration.

This official label of mental illness as contemptible deviance also appears in contemporary public discourse. A recent example is found in the high-profile case of Makerere research fellow Stella Nyanzi, a medical

anthropologist and activist who has recently been detained for her public criticism of President Museveni on social media, describing him as ‘a pair of buttocks’. As evident in the many comments on her Facebook posts24_{, this has caused much controversy, a debate around the ‘grotesque obscenity’ of her language, freedom}

of speech in Uganda, the despotism of the President of 31 years and Stella’s mental health. The government demanded a psychiatric examination of Stella. She and her lawyer refused on the grounds that: “They (the government) do not want to go to trial...They just want to de-legitimise Stella Nyanzi, characterise her as a

22 _{http://www.worldlifeexpectancy.com/cause-of-death/suicide/by-country/, accessed 29.11} 23 _{https://www.youtube.com/watch?v=5qZo8nLLnRc, accessed 14.11}

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fool, a mad person … and confine her to a mental hospital.”25 _{Whilst an official statement from Stella’s}

lawyer, this response is liberated by the linguistic freedom underpinning the case, revealing the caricature of ‘madness’ which underlies the exposed dominant view. The government had sought the authorised

understanding of mental illness as ‘foolishness’ to undermine their outspoken opponent in the eyes of the Ugandan public and the courts of law. Stella’s activism relies on bodily symbolism, for example in her visceral language and naked demonstrations demanding sanitary pads for girls. Her protests push at the borderlines of the body and of prescribed rules of normality, inherently therefore positioning her statements in the liminal social space alongside ‘madness’ (Veit-Wild, 2006: 110). The meanings ascribed to this deviant identity, as in Stella’s case, justify neglect and incarceration. Social stigma is thus intrinsic to the definition and diagnosis of mental illness in Uganda. This structural discrimination serves to underpin and sustain mental health stigma in the interpersonal everyday.

Economic Challenges in Mental Health Care

Systemic shortages in Uganda particularly apply to psychiatric resources, said to attract only 0.07% of budget expenditure (Nyombi, 2011: 5) with the World Health Organisation calculating only 0.09 doctors to every 100,000 in the population26_{. It seems the needs of mentally ill people are overlooked and disregarded by}

institutional decision-makers. As my research assistant Scovia said, “the institution has stigma at all levels, at community levels at national, it has stigma”. As outlined in the introduction, funding limitations mean that there are sometimes inadequate food and medical supplies to treat patients at the Fort Portal mental health unit. Poor adherence to powerful drugs hinders recovery, prolongs mental ill health and sustains stigma. Similarly, when the food runs out, the patient may have to leave before they have fully recovered, and the cycle of illness and stigma continues. As in Ortners’ first and second categories of practice, these challenges show how structures can be internalised and reproduced (1989: 194), or reinforced by action intended to negotiate them (ibid, 195).

My second interview at the mental health unit in Fort Portal was with a mother whose daughter is HIV positive and mentally ill, accompanied by a nurse. Her daughter had relapsed due to poor adherence to the medication, so they were staying in the hospital whilst she stabilised. We discussed what she referred to as the “big challenge” of staying in the hospital “now totally the food is out here”. She was fortunate in that her son could continue making money and bringing them food whilst they stayed there, which is sometimes not the

case. This demonstrates the need to rely on family and community when excluded by the economy, as shown

25 _{http://www.aljazeera.com/news/2017/04/museveni-critic-resists-forced-psychiatric-exam-170413151912804.html, accessed}

24.06

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in the following exchange:

Mother: There’s a big shortage of the drugs so long as the patients are increasing daily. [...] So if you take properly your drugs, so long as you have a problem over that HIV. [ Nurse hands mother bag of white pills.]

Me: What’s that? Medicine? Is this for your daughter? Nurse: She’s a friend of mine. I reserved some drugs for her.

This is evidence of a shared resourcefulness necessary in the absence of reliable state systems. This everyday management of structural limitations exemplifies a form of agency, and is reflected in the many instances of ingenuity, improvisation and cooperation that I witnessed. It is a way of “negotiating many of the structural limitations encountered in daily life” (De Bruijn et al, 2001: 2). When the economy is that of a ‘lower income’ country, mediation between structures and individuals must inherently be resistant to what is structurally imposed. In this way, social behaviour such as this can at once be purposeful and determined by structure; even when the intention of the goal is to negotiate structures, they inherently originate from them, defend and sustain them (Ortner, 1989: 195).

I observed many such structural absences within mental health institutions in Uganda which would suggest that people in need of care have been ‘discredited’ within this power context (Link & Phelan, 2001: 369), deemed less worthy of investment than others. Drug limitations particularly exemplify the potential for institutional stigma to be ingested, embodied and prolonged. Martin, the PCO ‘in-charge’ in Fort Portal, has previously been shown to raise the issue of how dangerous it is not to have the drugs. The following day, when I arrived at the hospital, there was a half-naked man standing in the middle of the waiting room with ropes tying his hands and ankles together. He was shouting to the 20 or so patients and relatives sitting on the benches. Everyone seemed concerned, and I could see why; this man looked strong and was behaving

aggressively. Martin said he was suffering from drug-induced psychosis. I waited in Martin’s office whilst he

went outside, and I could hear many people shouting, the tied man raising his voice further. After about ten minutes, Martin returned. The patient had been arrested and taken to prison so that he could no longer disturb

the ward. This is symptomatic of what is described by many mental health workers as an epidemic of

intoxication and a chronic insufficiency of available rehabilitative care. The resulting exposure of addicted people can further establish a fear-based moral judgement with the potential to justify discrimination or even incarceration. Thanks to the “vicissitudes of the lottery economy” (Comaroff and Comaroff, 2000, ref Newell et al 2014), sporadic government supplies and neglect from donors, this man was punished rather than

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rehabilitated. This is one example where discriminatory practices towards mentally ill people are in fact the result of economic necessity rather than stigma. This supports the idea that stigma can originate from institutional disregard and impose extreme realities on those neglected.

Psychiatric medicine in Uganda is lacking not only in availability, but also in variety. Predominantly, those available are the cheapest on the global market and therefore the most outdated. These ‘first generation’ psychiatric medicines were developed in the 1950s to treat psychosis, schizophrenia and mania. Side effects are said by psychologists to include “psychomotor slowing, emotional quieting, affective indifference”27 _{. Or,}

as I noted of female service users at the Recovery College; “legs hanging, eyes lidded and fixed in the

distance, movement slow and mechanical.” One told me that “the medicine made my sickness very strange”. Second generation medicines were discovered in the 1980s, and the World Health Organisation finds their side effects “more tolerable” but not cost effective in the developing world (Chisolm et al, 2008). Access in ‘developing countries’ such as Uganda is prevented by factors including inflated costs of non-generic pharmaceuticals, and of ineffective national drug procurement processes (ibid.). This is not to say that the newer medicines come without risks, including weight gain and diabetes, and their superiority is debated; at least 70% of comparative research studies are said to be industry funded, with bias insufficiently addressed (Abou-Setta et al, 2012). The introduction of these new medical risks on a large scale in Uganda is not necessarily a preferable alternative, particularly considering that there are other health care improvements arguably worthier of investment. However, the ‘cost ineffectiveness’ of newer medicines in Uganda is symptomatic of a global imbalance in how individuals are able to access personally beneficial scientific advancements, meaning that recovery options are more limited than elsewhere in the world. This reflects a logic of additional constraint on the most constrained which allows inequalities to deepen.

The observable side effects of first generation antipsychotics are exacerbated by what I’m told is a tendency to over-medication at Butabika, a necessity resulting from a shortage of staff and an excess of patients. On my second day there, I was asked to collect some women to attend a ‘mindfulness’ training session at the Recovery College. My presence on the ward elicited intrigue amongst those not catatonic, and I was encircled and greeted in a variety of local languages. The six patients able to speak English were chosen to come with me. They walked very slowly, about five steps behind me, with eyes fixed ahead, expressions blank and arms hanging by their sides. Only one of them could respond to my questions. When we arrived, we were asked to fill in a shortened questionnaire designed to measure our mood before and after the session. Rebecca, who I estimated to be about 16 years old, sat in front of me. She seemed intimidated by the questionnaire and was

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unable to respond to my attempts to help her. She bent to grip her shins as if to hold down the jarring in her legs. During the session, I was relieved to notice that she had a water bottle with her. I then sadly realised that she was using it to deposit excess saliva, another side effect of the drugs.

Her glazed expression and uncontrollable tremors and excretions concealed what she might have been experiencing psychologically and instead exposed an observable bodily ailment. In this way, the inhibited status of mental illness in Uganda depicts an observable irregularity at ‘the borderlines of the body’ (Veit- Wild, 2006: 100) and yet is imposed and amplified by structural limitations. Veit-Wild notes that, as Douglas (1966) and Turner (1967) suggest in their theories of social malfunctioning and liminality, the bodily disorder is indicative of a social one (ibid., 3). When minds, bodies and identities are overtaken by excessive dosages of outdated medication because of global corporate greed, government indifference and hospital overcrowding, the idea of internalised and embodied stigma becomes a disturbing reality. Broad institutional disregard is ingested by psychiatric patients in Uganda, and consumes them.

The Vicious Cycle

A common theme during interviews was the connection between problems of individual mind and problems in the wider world. In 14 interviews, stress, disappointment and boredom were cited as the primary cause of mental illness in Uganda. The stories to follow will show that ‘running mad’ is a natural response to unnatural socio-economic restriction, asserting mental illness as both a biological and a social disorder. As in Bourdieu’s statement above, there appears to be a cycle between economic, social and personal ‘ill’. The link between economic inequality and psychological sickness can also be drawn to stigma, as in Link & Phelan’s

conceptualisation (2001: 363), determining ‘life disadvantage’ and informing and reflecting inequalities at personal and institutional levels of society (ibid., 371). Mental health theorists in Uganda have described the relationship as a “vicious cycle” (Ssebunya et al, 2009: 2) between mental illness, poverty and stigma. Or, in other words, poverty can cause mental illness; mental illness can elicit stigmatisation; stigma can cause poverty and prolong mental illness. Social inequalities such as mental health stigma thus perpetuate themselves.

In consideration of the impact of unequal structures on the mind, and the increasing prevalence of mental illness in Uganda, below is an excerpt of a conversation I had with two former mental health service users visiting the mental health unit in Fort Portal for their monthly review. An analysis of the language used in this excerpt will show how words can be used to represent the relationship between individual experiences and social conditions:

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Isaac: You see that these days it is no longer even one family, each family has a mental patient. Maria: These days many family has.

Isaac: Every day there is a season, when at the hospital here every time they bring new patients every day. New patients, new patients. And when you go to Butabika it is worse.

Me: Do you think it’s increasing?

Maria: It is increasing very much. Even each of these families you’ll find a person. Isaac: Yeah it is increasing we don’t know what’s wrong.

Me: Do you have any ideas as to why?

Isaac: Maybe people are getting depressed because of modern problems. Maria: Depression. Poverty.

Isaac: Poverty, not everyone has his own thoughts. They may think of something and it disturbs him, he has no solution, then he gets mad.

Me: The modern world. Maria: The environment.

Isaac: The environment. Changes in the world. The worldly activities.

In this conversation, the connection between problems of the mind and problems in the world environment is plainly drawn. ‘Depression. Poverty.’ sit alongside each other without need for further explanation. The association is broadened beyond regional concerns, and acknowledges the impact of ‘changes in the world’ on mental health in Uganda. The feeling that mental illness is increasing in Uganda was shared by many

interviewees. Isaac’s repetition of phrases such as ‘new patients’, ‘every day’, ‘each family’ gives an impression that the increase of mental illness is unprecedented, widespread and out of control. Lacking control is also implicit in the expression that “not everyone has his own thoughts”. I often heard this idiom which relates poverty and mental illness via uncontrolled thoughts. In Isaac’s statement, there is a sense both of emotional excess and a deficiency of thought, or of thoughts that cannot be met with an external reality or a solution. Mental illness, or ‘getting mad’, offers the only route to psychological independence from ‘the vicissitudes’ of outrageous fortune, a reality characterised by precariousness and overwhelming absence. This was mirrored in this statement from a nurse at the mental health unit:

These days are stressed, people don’t have money. These days disappointments... These days HIV is too much. People they don’t have thoughts, they don’t have everything so stress again.

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Again, lacking resources and contextual precarity causes iterative emotional excess and cognitive absence. Natural thoughts and biological needs amongst the chaos of deprivation cause both internal and external discord; they are irreparably at odds with an irresolvable reality, their control no longer belongs to ‘the thinker’ and they become deeply uncomfortable and disturbing. This perhaps offers new meaning to the discomfort sung by the young Butabika patient for whom ‘the world is not home’. With a dead end at each juncture of thought, within and without, there is no escape except to ‘run mad’, a way of coping with an impoverished way of life in the ‘lottery economy’, responding to and refracting the chaos. Similarly, I also often heard that mental illness was the result of ‘thinking too much’ about adversity, said to be a common idiom of distress around the world (den Hertog et al, 2015: 383). One Congolese refugee told me the cause of his friend’s psychiatric illness, and the reason that he had brought him to the mental health unit in Fort Portal. “He has seen too much and thought too much about it. There are many events to deal with every day.” Ruminating about adversity or witnessed atrocities can result in excessive stress (ibid., 392). This idiom therefore symbolically mediates between discordant structures and thought, representing trauma as a natural preoccupation with unnatural contextual conditions.

These expressions of ‘too many’ or ‘too few’ thoughts are accompanied by an implicit or explicit reference to stress. Economic stress is one of the factors attributed to high suicide rates in Uganda (Mugisha, 2011b: 625). Psychologists have defined poverty-induced breakdown as ‘toxic shock’, a response to “strong, frequent, and/or prolonged adversity”28 _{which damages ‘brain architecture’ and future health. This exemplifies how}

outside forces can impact on mental structures, which can be understood within Ortner’s category of ‘routine’ practice, internalised and embedded structures. The experience of stress is shown to be iterative in the nurse’ above repetition of ‘these days’ and ‘they don’t have’. Scovia, a hospital therapist and my research assistant, similarly offered an emphatic description of stress as it is experienced in Uganda:

The socio-economic disturbance. Initially people in the villages used to not buy food. But now because of climate change, seasons, people buy food, right from the village. That is the stress. They don’t have food for the family the children are crying for it, it is a stress. So you stay stressed. Diseases. You don’t have money. You come to a so-called free hospital there are no drugs. You’re stressed. You’re sick in severe depression, then the coming of HIV, she has four children they all die, they leave young children for her she has no income to buy for them, she’s very old. That is another stressor.

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Scovia refers to the contextual factors outlined above which contribute to the ‘socio-economic disturbances’ around mental health in Uganda: poverty, HIV and structural limitations. The catalogue of ‘stressors’ and the iteration of the word ‘stress’ reflects the insistent reality the word represents, layers of pressure imposed by unmanageable socio-economic and natural disturbances. It is therefore telling that the word ‘stress’ occurs 52 times across transcribed interview data.

Father Kabura also saw ‘madness’ as a way of coping with economic restrictions: “we were all born with the potential to become successful, to be well, to achieve, but sometimes the community hinders that to happen, and it stifles our possibilities, narrows our possibilities. And when we cannot succeed because these

hindrances run our world, then to cope we become mad. So breaking down is coping." The social economy is shown to be responsible for the psychological problems of an individual. During the interview quoted above, with the mother of an in-patient at the mental health unit and a nurse, ‘stifled possibility’ was identified as the main cause of her daughter’s mental illness. Having worked hard to gain her certificate in home management and catering,

Mother: [...] She was told there was a job for someone with the piece of paper, they needed someone with a certificate at this big hotel in Kampala for the mzungo. When she got there they needed a house girl. Within a week she came back with her sickness, and at first, we thought it was malaria. It was only after all the tests were negative that we realised she was mentally sick.

Nurse: So like I was saying to you it is a sense of disappointment.

After only one week, this girls’ disappointing discovery drove her to despair and sickness. Global inequality is present in the story of this woman’s daughter, working in the ‘mzungo’ hotel her unfulfilled ambition. What role does globalisation play in this disappointment, the attraction to a proliferated symbol of light-skinned people in expensive hotels? In De Bruijn’s analysis, not only was Africa “pushed towards the market, to neo- liberalism, to specific ways of state formation, and to the acceptance of global structures and organization”, there was also an agentive ‘pull’ towards “the enormous appeal of consumption...the media...international travel and migration, particularly to the West” (2001:4). De Bruijn argues that this fact demonstrates agency and intention, and therefore subverts the popular discourse of “victimisation” (ibid., 1) typical in discussion of Africa’s position within the globalising processes. However, as found in this example, the pull of the unattainable can have destructive effects on mental health. It is apparent that the neo-liberal economy and media, as Bourdieu predicts, is being ‘paid for by certain people’.

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education people have worked hard to afford; Uber drivers with advanced economics degrees and young people with IT certificates disdainful towards agricultural labour. There is high social value placed on education in Uganda, but as Scovia says; “The jobs are not there. Many people are graduating because the institutions have increased all around. Many people are studying everyone can get university qualified and there are no jobs”. Two boda drivers I met called this cause of mental illness merely “social striving”, equating psychological disappointment with social ambition, and implicitly assuming that what is sought is

inevitably unattainable. The despair resulting from mismatched standards of knowledge and employment was a familiar concern regarding the mental health of young people in Uganda. One politician I spoke to, a former education minister and the first member of Amin’s cabinet to resign, finds that there is a practical vacuum following the abolition of technical schools during Ugandan Independence in 1962, “there are now as many engineers as there are technicians”. This means that economic progress is stunted, and that unemployment, dejection and mental illness continue to rise.

Consequently, many people, as Vincent here, lamented “that idleness, that lack of what to do, so people have resorted to take drugs”. For example, a physical health worker at the hospital remarked, “most of them they get so many certificates. Now you find a big number of the youth who are getting into this drug abuse, this alcoholism”. In response to this phenomenon, I often observed a sense of ‘moral apprehension’, concern about the state of things, the loss of culture, ‘hopeless youth’ and the future of society. I felt this had the potential to evoke the adverse social judgement and blame fundamental to mental health stigmatisation. As Goffman states, stigma is a bodily blemish representing “unusual or bad” morals (1963: 1). Those addicted can be disregarded due to the implicit association between their behaviour and a sense of degradation in Ugandan communities. This was a particularly prevalent topic during the health sensitisation talks, where various contributors stood up to express their concerns about people chewing ‘mirungi’, smoking bhang, growing marijuana cash crops and drinking 40% waragi gin. These contributors seemed to be universally of the older male generation, and their tone of consternation was often palpable; “everyone may perish in Uganda if we don’t stop” [translated], “the coming of drugs should be fought! With all effort!”. Even from health educators I observed this moralisation, for example in their appeal to the milder intoxication practices of older generations such as fermenting bananas. In many similar conversations, the initial connection between drug use and unemployment was lost in the vehemence, obscuring the real cause of problematic consumption, such as a hopeless position within a dysfunctional economy.

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Conclusion

Trauma, stress, disappointment and lacking control in response to unmanageable socio-economic conditions were thought to be responsible for the growing problem of mental illness by many of my interviewees in Uganda. Mental illness can thus be understood as an answer to questions posed by violent inequality. Many interviewees felt that there is an epidemic of mental illness in Uganda, wrought by intergenerational trauma and unstable economy. This stresses the need to improve mental healthcare before historically embedded illnesses worsen. However, economic shortages represent and maintain mental health stigma in Uganda. The disparity in funding for the healthcare of physical and psychological symptoms of the same diseases

exemplifies the global neglect of mental illness and reveals the entrenched nature of stigma towards mental illness. This is particularly apparent in Uganda, where access to basic healthcare and scientific advancement is unattainable. The globally unequal past and present continues to hinder the healthcare and therefore life chances of mentally ill people in Uganda, which allows the ‘vicious cycle’ of mental illness, poverty and stigma to continue.

The following chapter will focus on how the structurally inhibited status of mentally ill people manifests and is mitigated in everyday life. The top-down institutional exclusion of mentally ill people is mirrored from the bottom-up. Practices such as restraint, exclusion, rejection and even violence were plainly visible and

discussed throughout my fieldwork. The damage rendered sustains the original health problem, and the inhibited status of the bearer.

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CHAPTER 2: The Scars of History

Stigma was originally defined c.1400 as ‘branding by hot iron’, and subsequently was associated with religious disgrace c.160029_{. It can therefore be understood as the meeting point between the physical evidence of}

inequalities and their wide-reaching, symbolic origins. A distant code of (im)morality and (ab)normality determines that hot iron is pressed to flesh. The ‘spiritual scars’ left behind ensure that past digressions remain essentially present. As defined by a medical historian, scars are “marks of something that has happened to your body and as such they refer to something in the past. But they also incarnate the body’s present meaning in the sense that they can represent bodily difference.” (Slatman, 2016: 2). As in Bourdieu’s analysis of symbolic power, previous meanings cannot be purged. This etymology of stigma informed my research, based on the understanding that the impact of social symbols surrounding mental illness would be ethnographically observable in Uganda. It also informed Goffman’s conceptualisation of stigma as the bodily evidence of disgrace (Goffman, 1963: 2), an observable “attribute that is deeply discrediting” (ibid., 3). Evidence suggests that stigma reduces mentally ill people in Uganda “from a whole and usual person to a tainted, discounted one” (Goffman, 1963: 3), inflicting further damage on already vulnerable minds, bodies and identities. The idea that this carved ‘immorality’ leads to impacted life chances (Link & Phelan, 2001) came to life in Uganda, where mental illness leads to exclusion from marriage and employment, rejection from communities and families, and in extremes, violent restraint, imprisonment and abuse.

This image of stigma as a ‘scar’ also informed the idea underpinning the research question, that social meanings must be interrogated before considering how they can be countered. Weiss’ framework for researching health stigma and potential interventions first advocates for the consideration of its cultural determinants from various perspectives: self-perceived stigma, the families of stigmatized people, health care providers and attitudes of key community members (2007: 281). This chapter will include interview excerpts and stories from all perspectives. Mentally ill people ‘anticipate’ or ‘encounter’ stigma (ibid., 283), both with destructive consequences. Mental health workers and carers work within the complex burdens imposed by the sometimes destructive behaviours of mentally ill people and discrimination towards them. Families can bear the burden, or inflict it further. In some stories, communities are sympathetic. In others, they are afraid of mental illness, and see practices such as demarcation, exclusion, restraint and violence as a practical necessity. As supported by Ugandan grounded theorist James Mugisha’s analysis of ‘views on suicide among the Baganda’30_{, these practices of avoidance can be symbolic, ritualised and discursive (2011a; 2011b; 2014).}

29 _{http://www.etymonline.com/index.php?term=stigma, accessed 10/10/16} 30 _{Largest tribe in Uganda}

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This chapter will also address evidence that stigma is not purely symptomatic of arbitrary and collective cruelty towards mentally ill people, in line with Smith’s recommendation to ‘give thought to the function of the stigmatising views’ (2013: 50). This perspective makes ‘breaking the cycle’ of stigma more complicated; attempts to do so during health sensitisation practices will be discussed in detail.

Scars were visible on an almost daily basis. A particularly memorable meeting was in the tea plantations outside Fort Portal with Keira, a 9-year-old girl who had been found a few years earlier, abandoned and starving in an outhouse. Her parents had died of HIV, and whilst her sister had been taken in and cared for by the community, she had been left because she had seizures which people feared to be contagious. If she hadn’t been found by the local child development centre when she was, it’s certain she would have died soon afterwards. Keira is now unable to speak and has motor difficulties. The child development centre, who found her and now give her ongoing assistance, kindly let me accompany them on one of their outreach visits and translated an interview with her ‘mum’, the woman who has taken her in. The following is an excerpt from my field notes, which elucidates on the key themes to be addressed in this chapter:

The path to their remote home in the tea plantations outside of Fort Portal was rocky and uneven. As Keira approached, I saw that her face was roughly scarred, her eyes angry and confused. After introducing me, one of the therapists translated that Keira had two severe seizures in one week, when typically she has one a month. We went inside one of the two buildings. As in many Ugandan homes, the door is a light curtain. The roof is metal and the walls bare except for a crucifix, the room about 10m2. The visiting therapists put matts they had brought on the floor. The only other furniture in the room was a wooden bench along the adjacent wall. I was concerned that Keira, with her rough and jerky movements, and her already scarred face, would hit herself on the bench. The therapist also seemed concerned and said she didn’t seem herself. She began their exercises by showing Keira a board from which she could choose an activity. She skillfully kept Keira’s

movements in control by placing her legs on top of her. Her attempts to engage Keira in the activity (pushing furry balls into a bottle) were less successful. A few times Keira would stand up, distracted, her eyes disturbed and arms flailing. She once or twice focused on me but otherwise seemed

preoccupied with her thoughts.

During the visit, I asked her ‘mum’ to tell Keira’s story from her perspective. She said that nobody wanted to take care of her. The village chairperson had asked many people who all refused. As she’s a church goer, a kind person and an active part of the village, she conceded his request. People in the community warned her against it, but in exchange for some food and drinks provided,

“The Devil is that disease” : an ethnography of mental health stigma in Uganda

“The Devil is that disease”

An ethnography of mental health stigma in Uganda

Contents