“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 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,
5 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.
2 https://en.wikipedia.org/wiki/Western_Region,_Uganda, accessed 17.04.2017
6 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. 6http://www.thet.org/health-partnership-scheme/resources/case-studies-stories/case-stories/don2019t-they-throw-rocks-at- you-the-brain-gain-programme-in-uganda#.WQsOA8v_nx8.facebook, accessed 05.05.17
7 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
7 Motorbike taxis
8
Inside the mental health unit. Patient folders at the Fort Portal mental health unit.
Trainee nurses from the Fort Portal Institute of Nurses (FINS) at the Regional Referral Hospital.
9
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
10 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?
Outreach Day 1, Bukuku Health Centre III. Martin handing out leaflets
11
Outreach day 3, Kibiito Health Centre IV. Outreach day 2, Kida Hospital.
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)
12 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:
8http://www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/priority-areas/stigma-and- discrimination, accessed 20.10.2016
13 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
14 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.
15 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
9 http://www.butabikahospital.com, accessed 04.06.2017
16 10 stock market soar...will be paid for by certain people and eventually by the collectivity.”
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 development13, 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 14 http://pubdocs.worldbank.org/en/381951474255092375/pdf/Uganda-Poverty-Assessment-Report-2016.pdf, accessed 02.07
17 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 3017, 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
18
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 24 https://www.facebook.com/stella.nyanzi, accessed 24.06.2017
19 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 26 http://apps.who.int/gho/data/node.main.MHHR?lang=en, accessed 20.10
20 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
21 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
27 http://psychopharmacologyinstitute.com/antipsychotics/first-generation-antipsychotics/, 06.04.17
22 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:
23
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.
24 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.
28 http://developingchild.harvard.edu/science/key-concepts/toxic-stress/, accessed 04.06.2017
25 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’. I had many discussions about the struggle to find employment, particularly to reflect the standard of
26 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.
27 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.
28 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
29 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,
30 she took her in. Looking at the surroundings, and the many young children everywhere, this seems an incredible undertaking. She said it is a hard job, with the convulsions, her dependence and ‘toileting herself’. She believes Keira’s epilepsy is inherited and that medicine can help. Despite her sacrifice, and the evidence that her other children have not been infected, people in the village still don’t want her near them. They’re afraid of her as ‘her balance is off, and she destroys the property.’ I asked her if she’s afraid but she says she’s now used to it. This woman is not only strong minded enough to reject the community beliefs; she is also kind enough to sacrifice some of her limited time and resources to help this girl. I wonder what hope there is for Keira, if it’s possible for this extreme kindness to extend to extremely vulnerable adulthood. The therapist I was with thinks it’s unlikely and I agree. It seems a straightforward message, that epilepsy is not contagious, could have prevented this life from being lived.
Keira’s scars show the potential for damage wrought by widely held ideas about the symptoms of mental and neurological disorders. These scars are not necessarily the result of direct violence; abandonment by family and community can be equally damaging. It is important to note that this abandonment does not necessarily come from a place of hatred, but may be the result of communally embedded fear. These dominant narratives of stigma towards mentally ill people are ritually countered by mental health caregivers, such as Keira’s mum, an everyday sacrifice which diverts the impact of social hostility on mentally ill people in Uganda. Keira’s story emphatically suggests that community mental health education is needed to overcome the damaging potential of this fear, which will be discussed in the chapter to follow.
‘Mulalu’
‘Mulalu’ is the word used to refer to mentally ill people in Uganda, which can literally translate as ‘mad’, ‘crazy’ or ‘insane’31. Throughout my fieldwork, I often heard the phrase, “that one is mulalu”, their identity replaced by their nickname. This practice is what Link and Phelan would define as ‘labelling within a power context’ (2001), identifying a person as less productive or capable of success. People decreed ‘mulalu’, mad and useless, can struggle to access marriage, employment and education, thereby preventing them from living what is deemed a progressive and productive life. Scovia calls this their ‘double disability’:
So if you come and you get all the interventions and stabilize, because of the stigma you can’t get work, because you’re mulalu, you’re still mental your whole life. That is the stigma and it highly
31 https://glosbe.com/lg/en/mulalu, accessed 30.06.2017
31 disables these people. They can go back and work and where the treatment, many organisations are not ready to give them their job. That’s the highest stigma. Or if it’s a child and you break down you may never think of taking them to school. “This one mulalu, what will the mulalu do at school”. So it becomes a double disability for them. You have a mental disease, you need to deal with that for the rest of your life.
Social stigma is presented by Scovia as a disability in itself, sitting in parallel with mental illness and with equal weighting. There were various anecdotal examples of these ‘double disabilities’, the realities resulting from imposed meanings such as ‘mulalu’. This was evident in Isaac’s experiences, whose epilepsy and schizophrenia had stabilised thanks to medication, but who still faced difficulty in finding a job and a wife. When I bumped into him on his daily job hunt in the village, his glasses steamed up from the afternoon heat, the struggle was clear. As he said of people diagnosed with mental illness, “they can work, but the jobs are not easy to get and people are stigmatizing them”. Isaac’s mother worked in administration at the mental health unit in Fort Portal. She told me of some of the challenges they face in considering plans for his future:
Isaac’s mum: [...]But now I’m trying to think in the future, I can get a small business and we will work together. Because you can’t leave him alone. If other people know he is sick, they will take that advantage. [...] they may know that he’s sick, if it’s a shop they take advantage of. Because for him he’s simple, he loves people, they take advantage. [...] Me: Do you think he will marry? Isaac’s mum: He talks about it [laughs]. How easy it will be for him we’re not sure. It is his plan.
Stigma towards Isaac’s mental illness only serves to further exclude him from society who ‘take advantage’ and thereby ‘doubly disable’ him. The symbols implicit in the ‘mulalu’ label have a tangible impact on the life chances of the named. The first disability, his mental illness, has been overcome. The second, stigma, will need to be dealt with ‘for the rest of his life’. In excluding mentally ill people from institutions, the social meanings attached to mental illness can have greater longevity and damage than the health problem itself. In this, social symbols are made tangible, and meaning is embedded, enacted and sustained through its structural impact. As in Bourdieu’s conception of ‘reproduction’ (1991) and in Ortner’s of enacted structures (1989: 196), individuals are compelled to live in ways that reproduce the existing system of inequalities (Ahearn, 2001: 118).
32 ‘Mob Justice’
Observable scars were also rendered by the persecution mentally ill people, justified by the entrenched inferiority associated with the ‘mulalu’ label. I recall drunken men having stones thrown at them in the market, and Boda drivers mocking a truck full of forlorn male prisoners on their way to Butabika. I asked Isaac’s mother how people reacted to his sickness:
Now that. It depends on someone’s behaviour. My son is well behaved. People like him very much. Only at my place, at the moment as he’s taking drugs there’s no problem, but when he used to move without taking drugs, they used to beat him thoroughly. You see he was not a bad person, but when he saw girls, he could touch you like that. People want to start beating him. Even when he can reach somewhere, they used to see him there, they would call him a thief. They beat him, always suspicious of him going to steal. Even if other people say he’s got no problem they beat him, they tie him like this. He can’t even move alone, we move together.
Despite his recovery from acute mental illness, Isaac is still in danger of being beaten by the community. This ill-treatment restricts his freedom and safety, acting as another social barrier to his independence and ‘usefulness’, and is thus again a cyclical drive towards the continuity of his original problem. His mother reiterates that ‘they beat him’, her emphasis expressing the regularity of the violence her son was subjected to. Vincent said this ‘mob justice’ can even go as far as murder:
Vincent: They are there. But we have a big problem with mental problems. Most people, maybe 90% of people think mental health is not treatable, they beat mad people, they don’t always get that people are sick, someone comes and maybe steals something but because they are sick they just pick something, they tie them, to the tree or what they are disturbing people, they think they are distracting, so they just beat them up and kill them. Me: If someone who was mentally ill was murdered, would that go unpunished? Vincent: Yes it would. There’s a lot of mob justice here, people are killing thieves every day, they don’t give them a chance to go to court, they kill them.... So still the family of course, when someone gets mad, the family kind of resigns you know. They think they are poor, so when they kill them they say, ‘after all, he was a mad person’. You know that kind of thing, someone was already dead. And they run mad away from their village, they maybe walk up to a district where they even don’t know the person is mad, and he gets something and maybe destroys it or steals it, they kill him. And so, but even in homes, people beat
33 them in their own homes. And so we had someone who was actually mentally ill, he was killed. In my village where I’m coming from right now we had, I think it was some woman and she hit him on the head. There are so many cases.
Whilst Vincent condemns the murder of mentally ill people, his candid manner in listing these examples of brutal violence reveals the bluntness of this reality. Mentally ill people are so ‘deeply discredited’, discounted and dehumanised (Goffman, 1963: 3) that they are ‘already dead’. In this extreme, the lives of mentally ill people in Uganda are considered so worthless that their murder goes unpunished, and is even thought to be reasonable. Justified persecution or murder is the ultimate ‘scar’ of stigma, the most final impact of socially ascribed meanings on the body.
Vincent’s phrase, “someone was already dead”, exemplifies the Comaroffs conception of ‘social death’ in African communities; “[w]hen a man’s relatives notice that his whole nature is changed, that the light of the mind is darkened and character has deteriorated so that it may be said that the real manhood is dead, though the body still lives” (2001: 273). According to the Comaroff’s analysis, in African communities, personhood only exists in relation to others (ibid, 269). This aligns with other theorist’s conceptions of the ‘community based sense of self’, such as African theologian John Mbiti’s claim, “I am because we are, and since we are, therefore I am” (1970:171). James Mugisha also argues that adherence to collective traditions is inherent to communalism in rural Uganda (2014: 127). Some people explained to me that the collective tradition excludes mentally ill people and their families for fear of wider contamination. This was most apparent in consideration of marriage. As one boda driver explained, “In our culture, ancestors say it is hereditary”, with which my first interviewee, a local politician and cultural custodian in Fort Portal called Peter, agreed:
Peter: Here in our tradition there is something that we say in our own language. There’s a high precaution on who you have to marry... No here they normally warn people of who should marry. The whole significance is not to say you can’t marry you or some other girl. No. There’s some cultures that had some kind of genetic diseases. Let’s say 1000 years ago someone was dying of sickle cells. So they would say. Me: Don’t marry in that family? Peter: Exactly you get it. Because they believe. Also madness. There are some families where they are mentally disturbed. It’s not out of frustration or what. It’s the spiritual thing I’m telling you, but maybe this behaviour finally changed their genetic behaviour and their whole family behaviour they will continue being mad.
34 Interestingly, on this subject of marriage, both Peter and the boda drivers outsource their views to the communal, ‘in our culture’, ‘in our tradition’, ‘they would say’. Mugisha similarly observed this discursive pattern in a study of views on suicide in rural Uganda. Even to the sympathetic individual themselves, their view is irrelevant in the context of an opposing communal idea. This normative distancing highlights the complex interrelation between individual and community in relation to mental health. Social demarcation and punishment of mentally ill individuals is employed for the good of the collective.
‘Fear’
In cases where mental illness does manifest in aggression, the stigmatising view has a function (Smith, 2013: 50) for self, family and community protection. Sometimes, someone who is mentally ill may behave destructively and violently. I heard stories of mothers cutting their child’s throat without remorse, health workers knocked unconscious, and even had a few instances in which assault was attempted on me. During interviews, stigma would often be traced to a fear of potential violence. It was why Lynda, a physical health worker, said avoids mental health work:
Me: So would you have worked in mental health? Lynda: I wouldn’t. For sure. Eh I don’t have that physical energy to fight. Sometimes the people here are fighting. Me I don’t want that…They come and sometimes they want to beat you. Sometimes they can kill you by the way. If you have nothing to do you have to defend yourself. Me: Have you had to do that? (to mental health workers) Mental health worker: No me I had to run away. I was pregnant, expecting him (pointing to her six- month-old baby). It was so aggressive and he hit three people and they were unconscious and they had to be admitted. So sometimes they’re very dangerous. Lynda: It scares me. They’ve fractured the clinicians, fractured the bones. You see the Nurses and the Doctors fighting them there. Mental health worker: Sometimes they’re locked up in the side room, and the opening like they just come to fight. That’s why they keep them sedated to keep them weak.
For Lynda, mental health work is synonymous with fighting. Previous anecdotes of violent outbursts prove that being ‘scared of them’ show that this is not unfounded. However, I was always surprised when ‘physical health workers’ told me that they avoid the mental health unit for fear of being attacked. Having spent every day there, I felt no need to stay away for reasons of safety. It was particularly notable when a respected local
35 Priest also told me that he is ‘scared of them’ and avoids the mental health unit,
Sometimes I go to that hospital, I also feel scared of them. I’ve been there a few times, when I go there to pray with them. To tell you frankly I don’t want to go there so often. But when I’m called I go there. [...] They fear them. Because some of them [mentally ill people] are really deadly. Some of them [the community] tend to use force. But generally they are very sympathetic with people who are sick.
The Priest’s frankness demonstrates that he was liberated in justifying discrimination towards mentally ill people by the potential threat of danger. Sometimes, someone who is mentally ill may be ‘deadly’, and there are anecdotes to prove it. Isolated incidents are generalised and attributed to all patients in the mental health unit. They are placed at the centre of the Priest’s approach to mentally ill people and to the active avoidance of their care. However, when the community respond to ‘people who are sick’ with ‘force’, these occasions are specific within a general context of sympathy, and thus excused. This subtle, discursive form of stigmatisation reveals the underlying imbalance in attitudes towards people who are mentally ill.
Fear motivates mental health stigma, which motivates fear in the stigmatised. As Father Kabura explained, “When they started that clinic that Martin is running, people didn’t want to go in, they feared so much the stigma was so high...whether perceived or real, it stops people accessing help.” In line with Weiss’ definition, it was clear that self-directed, internalised or anticipated stigma can act as a barrier to effective help-seeking and recovery (2007: 283). Even when stigma is only ‘perceived’, its outcomes are still capable of worsening the feared condition, epitomising the cyclical pattern in which it is sustained. As a result, internalised stigma is as crucial to the continuity of the harmful manifestations of the idea as the collective view. This practice of internalisation aligns with Ortner’s theory of ‘routine action’, capable of embedding structures of thought through everyday practice, and externalising them to reinforce their origins (1989: 194).
Fear is therefore complexly intertwined with mental health stigma in Uganda. The word ‘fear’ occurs a total of 29 times across my interview data. It also features 11 times in a recent study by the Mental Disability Advocacy Centre (2014). As stated by Joseph Atukunda during a recent BBC documentary about his anti- stigma organization Heartsounds, “For me when I am walking along the street at home, there are some
36 people who see me coming and they branch off, they just fear completely without any compromise”32. The recurring use of one emotive word, found in personal anecdote, casual conversation, institutional report, and academic observation, suggests that the interrelationship between ‘fear’ and stigma towards mental illness in Uganda is entrenched.
‘Service above Self’
Martin thinks that this fear is unfounded; “look at me, have I gained even one scar throughout my whole career?”. Other mental health workers agreed. Halfway through my fieldwork, I travelled to Mbarara, another town in the western region and the second largest in Uganda. I was going to meet Elias, the psychiatric clinical officer in charge at Mbarara Hospital. His extensive experience and unique perspectives on issues of mental health in Uganda will often be referred to in the remainder of this thesis. He believes that mentally ill people who are behaving violently should be “given a chance in a conducive environment...if you address them well, with the right attitude, and give them security, they will respond accordingly”. To illustrate this, he told me the story of a patient thought of as violent, and treated as such. On arrival at the hospital, he was locked in a room. He banged on the door and shouted throughout the night. In the morning, Elias opened the door, told him he would let him out and asked why the banging and shouting? The patient responded that he was cold and afraid, that Elias should try to stay in the room for five minutes that night. If treated with hostility, as with anyone, mentally ill people can become aggressive. This reciprocal relationship between perception and action in relation to mental illness is found in Chinua Achebe’s ‘The Madman’, a short story in which a vagrant and naked man steals the clothes of a respected bather, whose resulting public nudity then lost him his reputation and eventually his mind (Veit-Wild, 2006: 25). As one Boda driver said, “you can’t be naked in public, it is a shameful thing”. The cycle of symbolic meanings and tangible effects unite in mutually sustaining dialogue, a social reality reminiscent of Bourdieu’s pattern of symbolic ‘reproduction’.
Goffman would categorise Martin and Elias as ‘wise’ to the social imposition of stigma (1963: 3), with particular sympathy for the stigmatised condition due to knowledge and proximity. In some instances, as with Keira’s mum, this wisdom extends to self-sacrifice. Grace, the senior hospital administrator at Fort Portal with extensive experience at Butabika, says that mental health care requires “service above self”:
Grace: You have to have service above self. Because you work for longer hours, you are talking to a person who will not understand, you say please bathe, at the end of the day he’s getting dirty water
32 https://www.youtube.com/watch?v=e5d8bhMf8xY, 18.52. Accessed 04.11.16.
37 and is making a mess. Please eat on the plate, pours food down, eats. And so, if you don’t have patience, if you don’t have that heart for them, you can’t manage. You have to be down to earth. Me: And does it attract as much money as other health work? Grace: No. In Uganda there’s nothing.
Mental health workers ritually promote recovery and counter stigma amidst an otherwise hostile environment. Physical, emotional, financial and social sacrifices are required in the difficult work of caring for mentally ill people “who will not understand”. Restrictions in mental health funding contribute to what I heard anxiously described at the CAMH conference as the “brain drain” (Joop, 2014: 816) of mental health workers to more rewarding or acceptable positions. It was the reason that one, seemingly talented, trainee Doctor told me he would not choose a psychiatric specialism, because “in real life in Africa, most of the people tend towards generating income, and then generating income in psychiatry is not so big as compared to other practices”. Again, a statement about the social inferiority associated with mental health is ‘outsourced’ to the collective view.
Mental health work has a ‘low status in the community’ (Butabika Recovery Manual, 2015: 5), something to be laughed at, even by other trained health professionals. This also has implications for the attraction of much needed medical staff into the field, and means that those who do work in mental health do not get the respect that they deserve. Martin told me that working in mental health means that “they think we are mental like our patients”. Grace, the senior hospital administrator in Fort Portal, had spent 12 years of her career working at Butabika, which earned her a new name:
Grace: When in Mulago33, they wanted an administrator to go to Butabika and everybody refused. Me I said I’ll go. People laughed at me, you know that stigma, they actually started calling me Grace Butabika. It is my name up to now. Because I was working there. But even the staff at Butabika will never tell you they are going there, they say “I’m going to Luzira”34, yet they are going to Butabika and they don’t want to say. Even psychiatric nurses don’t want to say that’s where I work. Me: Because people will laugh at them? G: Uh huh. Me: And why do they find them funny, why do they think it’s different? G: You know when you work with mentally sick people, people think you also have a problem.
33 Kampala National Referral Hospital where interviewee had trained 34 Maximum Security Prison in Kampala
38
Doctors, nurses, hospital staff and administrators become tainted with the label of mental illness, even when no longer working in psychiatric hospitals. The label is so potent that not only the name, but the illness itself, is conferred onto the mental health worker, thought to be sick due to ‘laughable’ proximity to sickness. Working in a ‘mental hospital’, caring for sick and vulnerable people, is felt to be something shameful, and working in a maximum-security prison more suitable. This mocking and concealment of mental health work was referred to by a number of health workers I met. They appeared to face the idea of communal disrespect with humour themselves, their demanding work instead gratified by the recovery of their patients. As Grace, Martin and Keira’s mum show, their service takes precedence over their own name and life chances.
‘Grace Butabika’; this name shows that stigma can be long-term and ‘infectious’ (Goffman, 1963: 52), shared by those with proximity and “transmitted through lineages” (ibid, 4). Similarly, I was told by a health worker that if someone commits suicide, the whole family becomes known as “a suicidal family”. This is supported by observations made by Mugisha, whose research amongst rural communities showed that when family members commit suicide, they are so devalued socially that their relatives are not permitted to outwardly grieve them. The family’s distancing from that relative becomes ritualized, for example in publicly caning and discarding the body, in order to protect them from collectively ascribed stigma (2011a: 629). In this communal paranoia, there is evidence of the potent contagion of social symbols regarding psychological sickness; even after death, they are transferable. Mental illness truly becomes contagious, if only in the fear- based dissociation it incurs.
‘Rejection’
The fear, burden and infectious labelling of brain disorders in Uganda sometimes leads to patients being rejected or abandoned by their families and communities. As shown in the previous chapter, the health system in Fort Portal is reliant on ‘family attendants’ to ensure that patients get the food and treatment they need. If a patient has been abandoned at the hospital, they sometimes arrive without clothing or bedding. Beatrice, the hospital social worker, calls them her ‘needy patients’. She told me, “In some cases there are patients without family. They reject them and leave them half way to the hospital. There is very little support available from the state in these cases.” It is her task to ensure their well-being and to try to re-settle them at home. She told me that during these visits, she often finds that mentally ill patients are left to sleep in the kitchen. “Some patients you find they have put them in the kitchen, that’s where they sleep, no bed no mattress no what. So actually they keep them as if they’re animals”. She tries to help the family understand
39 the illness, cautioning them not to ‘beat or torture them’, and that they can stay in the same house. In some instances, these visits are met with hostility and patients are rejected outright. I saw one letter which stated; “REJECTED PATIENT BY THE FAMILY MEMBERS [...] The mother rejected her, she refused us to leave her there”. Once they are rejected, they can remain at the hospital indefinitely. One service user, Joy, had been in the mental health unit for eight months with her young daughter, despite having stabilised for some time, and is said to have ‘institutionalised herself’ in avoidance of maltreatment at home. It states in her notes: “She doesn’t want to go home. She is not even discussing where she came from.” Joy told me that there’s no bedroom or mattress for her there and she instead has to sleep in the kitchen.
Vincent is quoted above to suggest that sometimes, “when someone gets mad, the family kind of resigns, you know”. Father Kabura had empathy for that decision,
Father Kabura: [...] And what I have noticed is people here, although there is stigma, people have a tradition of caring for their own. And they will until they fail. They will restrain, they will try their best, until the patient is out of control. And usually it takes between a year and two years. For the majority of the families to give up. So this is where, if within that one year or two years, if there was a government programme to support these enthusiastic families, then it would be helpful. Me: Overburdened. Father Kabura: Overburdened and they can no longer manage the person and they give up.
The family is weighed down, their costly help-seeking and care has failed, and the psychological, social and spiritual disorder persists. They are devalued alongside their mentally ill relative, whose behaviour can be destructive and their health care expensive and inaccessible. “They give up”. Father Kabura identifies abandonment to be symptomatic of institutional gaps regarding mental health in Uganda, which suggests that family abandonment or rejection is not only the consequence of stigma and ‘dehumanisation’, blame or hatred, but also of perceived necessity.
‘Tying’
The same can be said of the traditional and common practice of ‘tying’, sometimes evidence of institutional limitations rather than spite. Many families tie up their mentally ill relatives with ropes as a last resort, to restrain aggression, destruction, ‘wandering naked’. Patients arrive at the mental health unit in Fort Portal with ropes around their wrists and ankles. I encountered this on my first day there. As I was leaving the
40 hospital with Martin, we saw a man being carried by two others at each arm. As he got closer, I noticed many scars on his face, bandages around his ankles, and severe erosions around his wrists. “You see where they have had to tie him up”. The man was delirious, muttering to himself and I could imagine him becoming aggressive. The deep scars around the wrists and ankles of the man being carried into the unit were evidence of a prolonged struggle against ropes, an image of a disturbed mind and a family’s attempt to control it. As Martin says, ‘they had to’, to protect themselves and the patient. A conversation with three trainee nurses concisely explains why:
Scovia: That’s where you stay, do you have any relative of yours who is mentally ill? Nurse 1: Yeah. They are there. Scovia: And how are they handled by their family, their community? Nurse 2: Yeah, they tie them around with a rope. Sometimes they put them in a room and they close it. Nurse 1: Sometimes they tend to beat others, they destroy some people’s property. That’s why they tie them. Nurse 2: If you don’t tie them they can escape and go away. Nurse 1: They can even commit suicide. Nurse 3: They can get in an accident.
Tying also seems to exist in a downward spiral of stigma and ill health. Father Kabura said, poignantly, “when they restrain, people are near them, and maybe people should have been near them before that.” As in Elias story of the patient locked in a cold room, an empathetic and conducive environment would be more helpful for a mentally ill person than restraint. Inevitably, ‘tying’ can provoke further aggression and disturbance, and worsen the problematic condition. I was told of one particularly hostile instance of restraint by a physical health worker, Lynda, about her mentally ill aunt:
Scovia: But how was she handled? Was she handled with love, care, discrimination...? Lynda: Oh no. By that time I was not in a medical line. She was not handled badly according to the knowledge I have you know. They handled her like traditional way, isolating and discriminating her during the aggressive situation. They just tie her, they tie her with ropes, what, put her in a separate room, and the whole village would come to see her. Ehhh the whole village would come to watch because they would even get interested in what she was saying because she would always have those
41 uncoordinated speeches, “you know the snake you know what what”, so it was like... Me: A show? Lynda: It was. Because even the family itself they would connect you to that, you know “that one belongs to that family there”, but there was a lot of stigma and I think that’s why she even took off because at least she settled well.
This story engenders an image of family and community callousness, of ‘handing in the traditional way’. Her Aunt was isolated in a separate house where she was exposed in her ‘aggressive situation’. The spectacle of her illness was viewed as entertainment by the village, and drove her away from her home. Exposed blemishes, or ‘displays of deviance’, reaffirm stigmatised status (Goffman, 1963: 12) and embed further damage and self-hate. Sensitisation
How can such entrenched, widespread and sometimes justified ideas about mental illness be countered? Fourteen of the health workers I interviewed in Fort Portal were proponents of the ‘health sensitisation’ tactic. They try to educate local communities about symptoms of mental illness, how to treat people who are unwell with respect, that sometimes the hospital can help and that mental health problems are not incurable. Whilst the funding for community education is not available, they ‘sensitise’ relatives who come into the hospital, and during re-settlement visits at their homes. Another platform for this communication is through radio; Father Kabura and Martin host their own radio programmes on the local station, Voice of Toro, which is widely heard in the surrounding districts. Grace finds radio sensitisation effective as it means that those who are afraid of seeking help due to fear of stigma are able to get advice. She said that she sometimes speaks in Church to tell people to “come to the hospital”. As “technical people”, she feels the health workers are believed. She also arranges a march through Fort Portal for World Mental Health Day, the 2016 event seen in the photograph she gave me below.
42 Others felt that face to face sensitisation was more effective. Lynda said, “if they see a medical personnel then they say, ‘so you mean it is not contagious?’ We need to go and see their reaction, they can say ‘pardon, explain further’”. She and Scovia argued that community based health education is contextually relevant as word of mouth, storytelling and dialogue are a powerful way to engage Ugandan communities in new ideas. They explained the cultural and historical reasons for this,
Lynda: And you know, even here, Africa, reading is not, we haven’t caught up like yours, they’re not yet there. Some poor people don’t read. Scovia: For the African, if you want to keep your information sacred, write it for them. If you want it to just stay sacred. But if you talk you can easily carry the gospel. There is a lot of distortion. But if you write the fact, it will never be distorted, it will never be known. Because here our grandparents used to pass on information through storytelling, because they had not learnt to write, so I think that’s what we’ve carried on. This is our culture from the 14th Century now. Me: So if you want to change anyone’s idea about anything, the best way to do it would be through storytelling. Scovia: Yes verbal, verbal communication.
It was true that, throughout the two-week health sensitization programme that concluded my fieldwork, during presentations over two hours long, people would listen closely, respond in unison, laugh as a group, contribute with their questions and sometimes energetically enact their own stories. I’ve included screenshots below which show participation; they are taken from the footage of the sensitisation during the second outreach day in Kibiito. At least 50 people attended each of the six health education talks. Some people had heard about the sensitisation through a radio programme Martin had organised to mobilise communities; some heard from hospital staff directly; others were in the hospital for treatment and attended the sensitisation whilst they were there. This demonstrates a willingness to integrate new ideas and influences in relation to health, said to be a traditional East African approach, with healing methods historically sought from ‘culturally distant’ tribes (Rekdal, 1999: 458).
The health workers taught the communities about some of the known causes of mental illness, such as genetics, malaria, stress, malnutrition and drug abuse. They were taught to identify signs and symptoms of mental illness, such as: being abusive, wandering naked, sleeping outside, under and overeating and bad personal hygiene. They were also informed that nicknaming and stigmatisation is damaging. Elias has found the question, “how would you like to be treated?”, effective in helping people to recognise their fear-based
43 cruelty towards sick people. This form of dialogic interaction can therefore introduce new ideas. Then word can spread, as Lynda says, they can “convince others also to enroll, because it is a traditional thing they think it is a spiritual thing not curable through modern medicine in the hospitals, they never think of it.” The fact that attendance at the hospital has now increased by over a third each month following the health outreach programme suggests that this is true, that new ideas have been implemented and shared across communities. As in Ortner’s conception of ‘non-routine practice’, “change takes place because alternatives become visible” (1989: 201).
Kibiito HCIV, Outreach day 5, 23rd March 2017.
Kibiito HCIV, Outreach day 5, 23rd March 2017.
44 The Kabarole community’s openness to health sensitisation would also be supported by responses to some of the short, structured interviews I conducted after each session. Over the first four days, I interviewed fourteen people about the sensitisation, whose answers will feature here. (During the final two days, ten interviews were conducted on film amongst health workers and patient relatives, more generally about gaps in services than about the sensitisation specifically). I began the interviews by asking participants why they had come to the health centre, and where they had heard about the outreach programme. I would then ask them what they know about mental illness and how their communities react to mentally ill people. Finally, based on these answers, I would try to determine what they had learned, if it was helpful and if more such sessions could be beneficial in future. Nine interviewees confirmed they found the sensitisation helpful. Twelve of them said they found the outreach useful and would appreciate more of the same in future. I was told that it was interesting to learn that factors such as nutrition, stress, drug use and upbringing can affect mental health. Three said they would pass on what they had learnt to others in the community.
However, there are a few limitations to this qualitative approach which prevents a full conclusion on the effectiveness of health sensitisation for countering stigma. Firstly, my observations were hindered by the language barrier. All presentations and responses were in the local language, Rutooro, and were sporadically translated to me by one of the hospital staff. The majority of interviews were also translated, which means that the true meanings of responses were also somewhat obstructed, potentially biased in interpretation and summary by my research assistant, Scovia. Secondly, it is possible that there was a ‘social desirability’ bias in some responses because of mine and the hospital’s presence; perhaps people tended to respond positively. Thirdly, those who attended are likely to already be well informed about mental illness or to be receptive to new ideas. Finally, these responses were given immediately after the session. It would be interesting to conduct a similar programme with a long-term follow up study to determine how ideas have changed over time.
An interesting insight the sensitisation offered was that medical and traditional knowledge do not inherently conflict. This refutes a popular discourse regarding transcultural psychiatry, for example said by Pandolfo to bring to life “the inadequacy of all translation” (2008: 331). As much as they may be disdainful towards the ‘community myths’, the educators were at pains to avoid statements which question the validity of spiritual beliefs; as Martin said on the way back to the hospital one day, this would de-legitimise their information and they would not be believed. In fact, scientific understanding and spiritual beliefs may perfectly align, perhaps to the detriment of sustained stigma. For example, the traditional community belief that mental illness is inherited is in fact confirmed by the medical knowledge that some mental and neurological disorders are
45 hereditary. During the health education programme, I learned that a comparison between mental illness and ‘sickle cells’ was being given, presumably to offer a scientific understanding of the cause and cure of mental illness. Given interview responses outlined earlier, I was concerned that this could in fact promote historic practices of avoidance and mean that mentally ill people and their relatives struggle to marry.
Rather than bring ‘alternatives into being’ (Ortner, 1989: 201), could education have a further damaging impact on people with mental illness and their families? Does knowledge counter stigma, or simply relocate it? The sensitisation programme may have started a dialogue about otherwise silenced conditions, to correct “misinformation and unfounded fears” (Weiss, 2007: 283), and to remind communities that the health condition ‘is not the only feature’ of a mentally ill person’s identity (ibid.). Further, it seems that more people have since been encouraged to seek help. This reflects Ortner’s idea that practice is mutable through everyday ‘non-routine’ interactions, through which structure is lived and enacted but also “challenged, defended, renewed, changed” (1989: 196). For Ortner, ‘non-routine practice’ takes the form of ‘routine’ practice (ibid.), which is applicable to health sensitisation, Church-going, radio programmes and dialogic education. The ‘alternative’ content within these practices can advocate for novelty in the future routine; different stories and realities are made visible in the public realm. However, this content can also be unexpectedly accommodated within previous meanings, and perhaps even enhance their damaging social impact, testament to the complexity of psychological conditions and their attached symbols. Mental health sensitisation could therefore have brought about “unintended outcomes” (Ahearn, 2001: 119) in the flexible absorption of new meanings. Further unexpected alliances in traditional and medical systems in relation to mental health will be expanded in the following chapter.
Conclusion
In this chapter, I tried to avoid condemning stigma or romanticising counter-stigma attempts. This offers a broader view of the interactions and meanings surrounding mental health in Uganda which responds to the complexity of the subject and the multiple contradictions observable within the everyday. These observations were facilitated by the tangible evidence of mental health stigma in Uganda, in the form of institutional exclusion, rejection and violence. Some Ugandan communities have been shown to treat the mentally ill with fear and suspicion, which can manifest in dehumanization or ‘social death’. There are stories of justified cruelty or even murder. The hard concretization of the symbols surrounding mental illness in Uganda affirms the image of stigma as a ‘spiritual scar’, a bodily demarcation of historical inequalities (Goffman, 1963). Through this ethnographic lens, it has been possible to determine stigma not only as a ‘mark’, but as an
46 aspect within a “dynamic, relational process” (Smith, 2013: 50). As intimated in the introduction, the data often points to the cyclical nature of this process, uniting minds and social structures via meaning; stigma becomes a disability in itself. This study sits at ‘the borderlines’ of the social and the self (Veit-Wild, 2006) and empirically supports Bourdieu’s theory that mental structures are ‘formed and reformed’ (1991: 48) through symbolic practice.
Spirituality also sits between these borderlines, as supported by evidence outlined in the following chapter. Spiritual beliefs and practices can be shown to mediate between minds and structures, offering a point of reference between internal and external realities, and thereby a means to affirming and overcoming stigma and mental illness itself.
47 CHAPTER 3: Spirituality, Stigma and Healing
Father Kabura: ...is it real? And at the moment if you asked me I would say I don’t know...here in Africa, the Africans are very curious, in a sense that if there’s some challenge, they will find to explain it, to give a reason for it. And when they reach an age whereby there is no answer to the question, then they will spiritualise it. So this is where witchcraft comes in. It is the endgame of a question, a challenge, a problem, for which they have not found an answer. So when they spiritualise it it's very satisfying, at least for the time being, they have an answer... They are never giving up, asking nature. That’s the positive side.
There is a palpable sense of the spiritual curiosity that Father Kabura endorses in Uganda. ‘God’s will’ emblazons the buses and the sounds of overnight prayer haunt the night. As the Priest and psychologist explains, the infinite unknown is typically the first and last explanation sought for good fortune and bad health. Having been brought up in a culture that differently turns to ‘supernatural powers’ in times of sickness, the candid inquisitiveness I observed in Uganda helped me to recognise the need for a more holistic understanding in consideration of the mind, it’s healing and disorders, and its porous relationship with the outside world. According to the 2014 census, 84% of the Ugandan population are practicing Christian, and 14% Muslim35. Although, as recognised by African theologian John Mbiti, ‘many millions of Africans are followers of more than one religion, even if they may register or be counted in census as adherents of only one religion’ (1975: 30, ref Adamo, 2011). I met people who would attend ceremonies at both the Church and the Mosque. I also encountered widely held beliefs in witchcraft, often associated with demons and curses, and with mental illness itself. Many health workers I met were critical of “community myths” and traditional healing practices, and cited their potential to hinder effective help-seeking and recovery, and to promote fear and stigma. This was particularly evident in relation to epilepsy, as seen in Keira’s scars and further elaborated in this chapter. Theoretically, etymologically and ethnographically, spirituality and religion can therefore be shown to focus on and reproduce historical ideas; conversely, it can also be shown to offer a platform for healing, ‘emergence’ and unity, acting against psychological sickness and the discrimination it elicits.
I will first re-visit the conceptual definitions as relevant to in this chapter, in relation to spirituality and its capacity to sustain and counter mental health stigma in Uganda. The discursive breach between public and private is a key symbolic pattern which unites all chosen theories, particularly the etymological conception of
35http://www.ubos.org/onlinefiles/uploads/ubos/NPHC/2014%20National%20Census%20Main%20Report.pdf, accessed 26.04.17
48 stigma as a ‘spiritual scar’ (Goffman, 1963) and mental illness as an expression of a social malady (Veit-Wild, 2006). For Bourdieu, symbolic power is preserved via “the formation and reformation of mental structures” (1991: 47), or in the opposite direction, the “translation between internal dynamics and external forces” (1989: 200) fundamental to Ortner’s idea of practice. I argue these dynamic ‘bridges’ and their mediation allow for social continuity and change. As will be outlined in this chapter, symbolic practice related to spirituality is one such platform ‘betwixt and between’ (Turner, 1967) individuals and their surrounding structures, offering a location to affirm and to contest. It is this liminality which ensures the conceptual proximity of mental illness and spirituality, both transgressing the boundaries of social structures. This proximity is also particularly relevant in the Ugandan context of this study, in which “the intra human (the intrapsychic) is inescapably intertwined with the interhuman (the social) and suprahuman (ancestors, spirits, witches)” (Reis, 2013: 628). Defining Spirituality
Towards the end of my fieldwork, I returned to Butabika Hospital to attend a ‘spirituality training’ session with service users at the Recovery College. Isa, a Dutch psychologist who I had met the previous evening, joined me. When we arrived at the Recovery College, only one female patient was seated. She told us that she had been discharged and described how Jesus talks to her through her phone. Slowly other green-clad, barefoot female patients from the convalescent ward joined us, and later a few men, who we were told at the beginning were taking their porridge. The patients took turns introducing themselves and their ward with varying lucidity, some with their eyes half closed and legs jarring. The Nurse running the session spoke fluidly and confidently. She apologised to Isa and me that she had not worn her uniform today. The training session began in English, moved to Luganda36, and by the end had returned to English again. A peer support worker present took it upon himself to translate for myself and Isa only, even when the responses had already been given in English. The Nurse did not call on us to introduce ourselves, but later engaged ‘the visitors’ to respond to the questions outlined below.
During this session, patients were asked to give their definitions of spirituality and religion, which were written up on the board as below. I would like to use these definitions as a basis for mine in this chapter, to determine where they align with the theoretical frame, and with a view to the idea that symbols are defined as they are believed to be.
36 Language most widely spoken Uganda
49 What is spirituality? ● It’s divine power ● The way of identifying faith which comes from heaven ● It’s a belief which inspires you to live, work, love, forgive, be happy ● Allowing yourself to feel inspired ● Supernatural power ● Schizophrenia – voices as a sense, mind getting connected ● Your sense connecting to something bigger or smaller than yourself ● The outside believing of the creator ● Spirituality is believing beyond human
Taken together, these definitions suggest that spirituality is perceived as recognising that which is ‘outside’ and ‘beyond human’, a belief in a supernatural power, which inspires connectivity. There is a sense of active agency in choosing to acknowledge what is ‘bigger or smaller than yourself’, that you must ‘allow yourself’ and ‘identify’ this awareness, intentionally ‘connecting your senses’.
According to theologian Waaijman, the traditional meaning of spirituality is a process which "aims to recover the original shape of man, the image of God. To accomplish this, the re-formation is oriented at a mold, which represents the original shape: in Judaism the Torah, in Christianity Christ, in Buddhism Buddha, in the Islam Muhammad.” (2002:463). The idea of ‘re-formation’ intimates that spirituality looks back to the origin, and that religion provides ‘the mold’ to be accomplished, a communal regulation of how the ‘beyond human’ is acknowledged. According to this definition of religion, there is an inherent preoccupation with the previous. The service user trainees at the recovery college had a similar interpretation of religion:
What is religion? ● A set of laws governing faith ● Following long time laws that don’t change ● A set of beliefs and practices which brings wisdom from above ● Belonging somewhere ● A belief system ● Religion is human setting
50 For these respondents, their spiritual faith is governed by the human system and laws of religion. These ‘long time laws’ re-affirm inscribed value codes and reify them as unquestionably correct. Mental illness can thus be codified as ‘incorrect’ as per the ideas of the past. For example, in the Bible, Christ as ‘the mold’ healing the afflicted; “they brought Him all sick people who were afflicted with various diseases and torments, and those who were demon-possessed, epileptics, and paralytics: and He healed them.” (Matthew 4:24). Those tormented by spiritual, mental and neurological disorders are transformed, corrected and improved by an authority (Foucault, 1975: 1643) who represents ‘the mold’. Their need for healing suggests that they are essentially ‘unmolded’, socially malfunctioning and spiritually exiled or possessed (Veit-Wild, 2006: 127). ‘Long time laws’ are inherently focused on the moral traditions that came before, and can therefore sustain historic stigma today.
The definitions listed above also imply that spiritual beliefs breach the private and the public realm, requiring that the believer acknowledges certain inner feelings in relation to an outside force, with religion acting as an external system to govern this acknowledgement. As discussed, it is these iterative inward-outward translations which locate the possibility of dynamic continuity and change. The following answers would reinforce the capacity of spirituality to both inwardly embed moral codes and outwardly establish connectivity between people and society:
Why do other people choose to live a spiritual life? ● To be humble in society ● Respect others ● To have hope in difficult life ● To be respected ● To help the poor to win God’s favour ● To be with supernatural power ● Because of challenges or having poor mental challenges ● It helps to overcome temptations
● To be able to reach another person ● They choose spirituality to live after death ● To be with good discipline ● Inner spirits help you to overcome temptations
51 ● To tell us not to do bad things like steal, kill, rape, commit adultery ● The way you believe will drive you to do good/bad ● Connecting to God ● Have good morals in society
Stories where spirituality has helped with recovery? ● It has led us to appreciate those who have taken care of me ● It has led to ignore negative things ● Helped to combat fear ● It helps in righteousness ● It helps us to have love, joy, hope leading to recovery ● People cursed them. Inner spirit helps you to overcome them ● Helped you to ignore the voices, negative thoughts ● Helped to stop drinking alcohol and taking drugs ● Helped to move in the good, right way. Joy, happiness, wisdom, love ● A source of love for each other ● To have faith ● The Bible says God is love, we all see that ● Through believing God can heal me, through being in hospital and taking medicine, God can heal me
Spirituality is defined here as a collectively oriented force. It harmonises between the private and public realm, helping connections between people and with God. It helps these respondents to regulate themselves and their behaviour according to ‘good morals in society’, to ignore negative inner thoughts such as temptations and establish a positive outer direction such as humility. Interestingly, it is felt to ‘combat fear’ and to offer ‘a source of love for each other’, both emotional interactions already shown to sustain and counter stigma respectively.
The emphasised final point in the list also reflects a key aspect of the spiritual context I observed in Uganda. “Through believing God can heal me, through being in hospital and taking medicine, God can heal me.” This statement proves that not only can scientific and spiritual perspectives be allied, they can be mutually reinforcing. Even with an answer offered by medicine, there is another question posed by spirituality. In this way, these seemingly disparate scientific and spiritual discourses can sit comfortably alongside each other in
52 Uganda. It was often explained to me that demon or ancestral spirits cause mental illness, which is cured with medicine, and prayers in the Church. Ben, a peer support worker at the Butabika Recovery College, outlined his three world views:
1. Christian. Godliness, biblical principle, peace, joy, paying tithe, blessings. 2. Spiritual. The Devil, curses, sickness. At the same time a teacher to learn from, to give you an “astro sense”. 3. Science. The body, the brain, functioning, medicine, doctors.
This offered an early insight into the generally perceived separation between the spiritual world and the Christian world: the association between spirits and darkness, sickness, ‘the Devil’; and the connection between Christianity and ‘correctness’, positivity and order. This can be somewhat enlightened by an understanding of the colonial past and the missionaries’ message, that categorised the spirits of traditional African religions “as expressions of ‘heathen unbelief and evil superstition’... the world outside the church came to be seen as the ‘kingdom of darkness’” (Gort 2008:748). This tripartite view represents the potential for ‘structural transformation’ (Sahlins, 1981: 45) through cross-cultural knowledge. As with the health sensitisation, the ‘new tabus’ (Ibid., 45) are unexpectedly allied across traditional and imported belief systems, with the integration of new terms alongside the previous.
In some ways, the traditional and medical approach to mental illness in Uganda are also similar. For example, comparisons can be drawn between the symbolic healing methods of psychotherapy and traditional healing ceremonies (Dow, 1986: 56). The comfort of being heard by someone closer to knowledge of spirits or science, depending on ‘the myth’ defined between patient and healer (ibid.), is widely agreed to be an essential aspect of recovery from mental illness. As Vincent says, “you know some mental problems are just psychological, and some people just believe it, they get healed”. The effectiveness of traditional healing for psychological disorders in Uganda was proven by a recent statistical analysis, in which of 978 subjects, 53% recovered and 35% improved (Degonda and Scheidegger, 2009: 1). This reflects the diffuse origins of mental illness, spanning social, psychological and biological issues.
It is said that there is a need to mobilize local healers in low income settings (Joop, 2014: 809) and that there is “strikingly little research done on the effectiveness of traditional healers” (ibid., 816). As outlined by Mbiti, “[t]o African societies the medicine-men are the greatest gift, the most useful source of help” (1970: 166), particularly in consideration of extremely limited medical resources (Sorsdahl, 2009: 1). The PCO at Mbarara
53 Hospital, Elias, has run a successful project of collaboration between the hospital and healers to encourage knowledge sharing, referrals and better access to care. He was the first medical practitioner to tell me that “science can’t explain everything, faith must explain the rest”, that hospitals should not monopolise health care if they want to meet the needs of their communities. He has approached healers with this attitude, showing respect for their more holistic knowledge of the patient’s lives, family dynamics and belief systems; a more closely ‘shared myth’ (Dow, 1986: 56). Now, when healers recognize they are unable to help acutely ill patients, they know when to refer them to the hospital. When they brought in the traditional healers for meetings and training at the hospital, many of the hospital patients requested to see the healers instead, and Elias was interested to note that those attending both types of treatment were quicker to recover. Perhaps other hospitals in rural parts of Uganda such as the Kabarole District could benefit from this form of collaboration.
Having said that, there are undoubtedly tensions between the traditional and the medical approach to psychological sickness and healing. There was often a sense of disdain expressed by hospital practitioners towards “those community myths”, the contentious practices of ‘witch doctors’ and frustration at their interference with their patient’s recovery. Martin told me that he estimates 75% of his patients also go to traditional healers. Him and other health workers feel that this can prevent proper adherence to the medication or delay hospital visitation in the first place. They feel that families waste their money on traditional healers, then, if or when it fails, they may lose hope, abandon them to a hospital system which is in fact reliant on family attendance. During the spirituality training at the Butabika Recovery College, the Nurse dismissed contributions about ‘witch doctors’: “everyone here went to the witch doctors before coming here. But we ended up here so we’re not taking that point”. I also heard stories which reflect a recent study by the Mental Disability Advocacy Centre, which criticizes the unregulated, violent and stigmatising nature of some of these ceremonies (2014). One service user at the Recovery College told the class, “the witch doctors, I refused when they hit me”. Joy similarly told me “they take me to witch doctors, but I refused it, I wouldn’t like it, it was frightening...witch doctors have slapped me. They come very quickly and slap me”. The similarity of these reports, from Kampala and from Western Uganda, would suggest that these are not isolated traditional practices for treating mentally ill people in Uganda. In both statements, the witch doctors are ‘refused’, an active rejection of their proposed healing ‘myth’ (Dow, 1986: 56), which would render their methods ineffective and presumably more harmful.
There were also examples where the scientific approach could not be accommodated within the spiritual worldview. The peer support workers at Butabika Hospital were given a two-day training in the symbolic
54 healing methods of cognitive behavioural therapy (CBT) by a psychiatrist. CBT is a talking therapy to manage and balance cognitive, emotional and behavioural patterns. The patient is supported to overcome unhelpful thoughts which cause negative emotions and unmoderated behaviours at odds with reality. This presentation prompted the following interesting exchange:
PSW: What is the opposite of a blessing? Doctor: A curse PSW: So they exist. But blessings and curses don’t exist in science
This question was difficult for the Doctor to answer. He responded, as he did at other similar questions during the training, that whilst blessings and curses do of course exist, CBT is a ‘tried and tested method’ which has been proven to work scientifically. This peer was unsatisfied with that response, and felt research should be done to integrate spirituality and the Bible into this scientific model, which too starkly divides mind, body and soul. This exemplifies how psychological therapy may fall short in Uganda, and explains why it is often supplemented by other help-seeking behaviours.
Angry Ancestors, Curses and Blame
As has been illustrated, mental and neurological illnesses are often closely associated with spirits in Uganda. Many interviewees agreed with Lynda here, and Ben above, that it is particularly attributed to witchcraft and equated with the Devil:
Me: So what do you know about mental health? B: This is a disease, a condition which is more so connected to witchcraft, to these spirits eh. Me: More so than a physical illness like malaria? B: No! It’s only mental which is attributed to witchcraft. These other conditions we don’t attribute to that. And maybe some epilepsy because something which comes with a lot of aggression, they see some symptoms and signs which they can’t explain, if they can’t explain all those are connected to witchcraft. Me: Ok. And do you believe in that? B: I don’t believe like that. I believe witchcraft can cause mental illness however I don’t understand it. [Laughs] I can’t know that this is witchcraft or how? I can’t differentiate. But I believe that the Devil is there and can also cause some disturbance in people, the Devil is that disease.
55 In line with Father Kabura’s view, witchcraft is an answer to that which “they can’t explain”. Psychological problems also pose the same problem to biomedicine, with exact cause and diagnosis unconfirmed, and a requirement for ‘storytelling’ rather than scientific investigation (Mhina, 2009: 146). The ‘spiritualising’ response to this unknown both reflects and reinforces the mystery and ‘incurability’ associated with mental illness. The cause of mental illness was sometimes attributed to grieving ancestors enacting some kind of revenge. It could also be understood as a curse from someone in the family or community, the result of a feud over land or love. Or, possession by demons or spirits, most often associated with epilepsy and convulsions. This can mean that blame is attributed, that poor mental health is seen as a deserved punishment; this, alongside fears of the unknown, can exacerbate and sustain mental health stigma. For example, to expand on the belief in the ancestral cause, Peter, a local politician and custodian in Fort Portal, explained:
Peter: So is spirituality confusing people’s minds? Is it resulting in a psychiatric problem? Yes that’s true. Why? Mostly because they don’t observe the norms. They will face a debacle from the family spirits. It’s been happening and it happens. Me: It may not be their lack of conformity it may be their ancestors? Peter: Yes, you will have to face the consequences. There are some things you can’t breach. This is stronger in the Baganda, but even here.
Here, the connection is drawn between the spirits and the norms. In the same way that stigma can be “transmitted through lineages” (Goffman, 1963: 4), so can the punishment and disgrace of ‘confused minds’ in Uganda, specifically here in Fort Portal. Peter’s comparison with the Baganda family spirits shows that spiritual beliefs can vary according to regional tradition, and that their specific manifestations can be both similar and disparate across Uganda. A key shared aspect of this belief is that there is a continuation of symbolic life after death (Mugisha, 2011b: 624), and that therefore both ancient humans and the recently deceased can influence how their surviving relatives live today. In this iterative formation of personal and collective history, previous norms are naturally sustained.
Another interviewee, a service user called Samuel collecting his medication during a monthly review at the Fort Portal mental health unit, was a victim of the meanings attached to this inherited punishment. His parents’ speculation in the search for an explanation for their son’s mental illness has led them to conclude that perhaps it was due to the fact that his father didn’t give his mother’s parents a dowry. “So it’s because my grandfather, the father to my mum, died with that grief of not receiving something from my father.” This has
56 resulted in two negative effects for Michael. Firstly, the belief appears to have exacerbated his symptoms, “when I start calling those things of the past, ah, I lose my senses. I get attack”. This exemplifies how spiritual beliefs can hinder effective recovery. Secondly, the burden has caused his father to disown him; “now my father is not on my side. Now he told me, he chased me from his home, said ‘now you go away from my home and dig’. Those, how can I call them, those beliefs of the Bakiga37, my mother is a Bakiga and my father is a Bakiga but he doesn’t want to call himself Bakiga. Those certain beliefs, you take them away from my home.” Again, spirits align with traditions and demarcate tribal differences. Perhaps it would be possible to assume that his mother’s resentment and father’s guilt are being translated onto their son’s misfortune. Either way, in this instance, it has exacerbated this father’s ill feeling towards his son’s illness which has led to his rejection, which has been shown to be one of the most damaging manifestations of stigma in Uganda.
This sense of guilt and blame in relation to mental illness is also assigned by witchcraft and curses amongst the living. Vincent, the founder of the Fort Portal Institute of Nursing, explains that being bewitched is thought to be a consequence of ‘doing wrong things’;
Me: How do you think the idea that it is one disease and bewitching, how do you think it contributes to the idea that mad people are useless? Vincent: They are somehow related and you know bewitching also has, some people believe that some mad people have done wrong things, and because of that they have been bewitched. Maybe they are thieves, because they say if you come and steal my laptop, I go to the witch doctor and bewitch you, they run mad. So they run mad and they say that thief is mad, and of course a thief is kind of worthless, a bad person who has done wrong things, deserve what they are getting. That one deserves to go mad because you are a thief. So that is the relations of the bewitching. Because I know a few people in town, mad people, and those people say, stole some people’s things, and then those people go to the witch doctors and bewitched.
Mental illness is therefore already seen as a deserved punishment, and signifies previous digressions such as stealing. Vincent’s animated imitations depicted the way that ‘mad people’ are discussed by the community in Fort Portal, the way mental illness is discussed in the day to day, and the stories told about mentally ill people. Vincent explained that people will claim someone’s bewitchment as their responsibility, implying that the supernatural powers of witchcraft are revered. If someone is thought to be bewitched then often someone else will claim it as their responsibility, “because they say ‘ohh that one is bewitched’, and the other one say
37 Ethnic group in Southern Uganda and Northern Rwanda
57 ‘ahh it is me actually, it was me who bewitched her’, of course bragging.” He also told me the story of girl whose mental illness was thought of as a punishment for leaving her boyfriend for a richer man:
V: There is a young lady who is mad, a young girl, she’s touched, she’s obviously touched and she has scars and what. And there’s a common story that she was in a relationship and ate someone's money, the boyfriend, a lot of it, and then she got another rich man, after finishing this one's money, she got another man who is richer than this then stopped loving this, then fell in another relationship, and this old boyfriend went to the witch doctor and bewitched that lady. So they say ‘ahhh she deserves that, why did she need all the money for this poor man, then she goes and marries a rich one, so let her suffer’. So you see it’s that kind of thing, they say you deserve what you have.
The prior transgression of social norms is signified in the mental illness as spiritual possession. There is of course a direct link between the perception that ‘she deserves that… so let her suffer’ and the stigmatisation of “a person who is quite thoroughly bad, or dangerous, or weak” (Goffman, 1963: 3). The expression that this young girl is ‘obviously touched and she has scars and what’ is also poignant. Being ‘touched’ is an expression to refer to someone as mentally abnormal; the fact that it is ‘obvious’, and that her scars are relevant to that, shows that her difference is socially demarcated and visible. The expression might also imply that person to be closer to God and the supernatural realm, chosen and special. This reflects Veit-Wild’s interpretation of mental illness at the ‘threshold’, that “the ‘afflicted’ person can access something beyond that of unafflicted people” (2006: 61).
This proximity to the ‘beyond’ may also be what causes fear of ‘spiritual attack’ and avoidance of mentally ill people. Elias told me that during his training, his teachers saw mental health and related work as strange. This was predominantly due to an association with witchcraft, and with the presented behaviours of the mentally ill. He feels that many people believe mental illness only happens to ‘a class of unfortunate people involved in witchcraft’, “but for me I am free”. A few writers similarly determine a connection between “[u]nderstanding phenomena through the lenses of witchcraft” and “exacerbated anxiety” (Kirmayer & Blake, 2009; Nichter, 2010, ref: Reis, 2013: 636). Devisch interprets ‘bewitchment’ or ‘spiritual possession’ as a projection of unconscious paranoia, “fantasies of threat or persecution, ill luck and insecurity” (2005: 390). We have seen this in Samuel’s story, in Keira’s scars and in the ‘distancing’ rituals around suicide. These examples show how spiritual beliefs in rural Uganda can run in parallel to social and psychological maladies, reflecting and reinforcing them. This sense of anxiety in relation to ‘supernatural strangeness’ was particularly observable in relation to epilepsy.
58 Epilepsy
Epilepsy is the most common brain disorder in the world, and in Uganda. A systematic global review has noted almost twice as many incidence of epilepsy in developing countries (Ngugi et al, 2011), which the World Health Organisation (WHO) attributes to higher risk factors such as malaria and greater incidence of brain injury38 . It was frequently discussed at the second annual Child and Adolescent Mental Health (CAMH) conference I attended in Kampala, where many of the facts to follow were presented. At Butabika 80% of patients are admitted with epilepsy. It is said to take the higher proportion of attendances in most mental health clinics around the country, as evident in Bukuku, a village at the foot of the Rwenzori Mountains, where I noted that 47% of patients in the last quarter of 2016 had epilepsy (see figure 3 in the appendix), and at the Fort Portal mental health unit, where a third of patients seen in March and April were treated for epilepsy (see figures 1 and 2).
Anticonvulsant medication stops seizures in 70% of cases39. Despite the effectiveness of the treatment, the World Health Organisation estimate that three quarters of epileptic patients in the developing world do not receive treatment40. There is shortage of available medicine and trained medical staff to treat epilepsy in Uganda; the result, as identified in one village health centre audit presented at the CAMH conference41, is erratic prescribing including sub-therapeutic dosage and the use of multiple anti-epileptic drugs, which leads to poor seizure control. Elias ran an epilepsy training programme in Mbarara to close what the WHO describe as “the treatment gap”42. This project helped Village Health Teams, community based health representatives (Musinguzi et al, 2017: 2), to identify 341 cases of epilepsy, of course excluding those who were afraid to admit the stigmatised problem. Elias argues that the social consequences are more severe and complex than the illness itself.
These social consequences appear to be long-standing, and are referenced in a 1965 observation of mental diseases in East Africa; “epileptic children are abandoned because of the fear that their disease may affect other members of the family” (Kagwa, 1965: 678). As shown in Keira’s scars, the fear of demon-possession and contagion has a particularly damaging effect on the lives of epileptic people in Uganda.
Scovia: [..]Like the epileptic children they don’t want to take them into school, they are neglected.
38 http://www.who.int/mediacentre/factsheets/fs999/en/, accessed 16.05.17 39 http://www.who.int/mediacentre/factsheets/fs999/en/, accessed 16.05.17 40 ibid. 41 ‘The Rational Use of Antiepileptic Drugs at Semuto Health Centre IV, Nakaseke District: A Clinical Audit’; Dr Mukochi 42 http://www.who.int/bulletin/volumes/88/4/09-064147/en/, accessed 14.06.2017
59 Me: I’ve heard this about epilepsy there’s the idea that it’s contagious. Scovia: Yes that’s the myth, the community myth.
The ‘community myth’ has tangible effects. Martin explained that many children are hidden away by ashamed families. As well as being prevented from attending school, I heard stories of them being banned from playing with other children in the village, from visiting a neighbour's house, or even sharing the family plate or bedroom. There is a Baganda proverb that says, “a united family eats from the same plate”43. The community rejection is also visible; Elias said that they can’t find a partner and even their families are stigmatized. I asked three trainee doctors at Fort Portal during a focus group if they would consider employing someone with epilepsy. Their hesitation was palpable, punctuated with silence and laughter; eventually one responded: “I assess you properly, if you can manage, then maybe.” Epilepsy is therefore a neurological disorder which has no physical bearing on your ability to work, marry, go to school, play; but due to social symbols, these very real effects are observed. This neatly fits the paradigm of self-sustaining stigma, the reputation being more debilitating than the neurological disorder itself.
From the stories I was told, this fear is strongly associated with witchcraft and contagion, or what Lynda described as “Bad spirits. Bad omens. Bad things.”. Some of the confusion around the disease was evident in questions asked during health sensitisation, such as, “is it true that you get tremors if you eat with in-laws?”, “if epilepsy is a medical problem, then why do attacks coordinate with the moon?”. Elderly women in the audience defended their evidence of epileptic contagion, perhaps explained by the genetic link. Elias explained that typically, people run away when epileptic people have fits. This regularly happens to Grace’s son: Grace: Traditionally, people would think epilepsy is witchcraft, someone has practiced witchcraft on a person, evil spirits are over him, so they think if they touch him they will get infected... I have a son who has epilepsy...he goes and gets frequent attacks. Now because of that he’s stigmatized, people think epilepsy is contagious, so if he has an attack everyone runs away, so I have to run.
When a person is vulnerable in a state of ‘attack’, they are actively abandoned. Grace offered further background to this: “and you know when you’re epileptic you either pass urine or you bring out of saliva, and you become unconscious, so people associate all that with witchcraft and they think it’s infectious”. According to Veit-Wild’s interpretation of Turner’s (1966) concept of liminality and Douglas (1966) concept of ‘pollution and taboo’ in consideration of mental illness in Africa, there are “taboos around liminal states of
43 https://twitter.com/BBCAfrica/status/636765545115860992, accessed 06.05
60 being; folk tales warn against contact with contagious persons and their polluting qualities” (Veit-Wild, 2006: 110). The unconscious bodily excretions signify the liminal state of the epileptic fit, ‘betwixt and between’ the human and superhuman, the body and the mind. There is a perceived ‘danger and impurity’ (Douglas, 1966) at these bodily, mental and spiritual borderlines met in mental illness, contributing to its marginalisation. As in the chosen definitions of spirituality and religion, looking to ‘purity’, the innocent source and original shape of man, an epileptic fit is the expression of the ‘anti-mold’, ‘inadvertently crossing some forbidden line” (ibid., 1).
These beliefs also have implications for help-seeking behaviours. The fear of stigmatisation means that people suffering with epilepsy in Uganda will avoid the hospital. One pediatrician at the CAMH conference argued that epilepsy should be treated outside of the mental health unit, comparing it to “adding salt to a wound” of the already stigmatized condition44 (Hanneke et al, 2008). In consideration of the high success rate of properly administered and available antiepileptic drugs, this ‘hindered help-seeking’ (Weiss, 2007: 281) is particularly damaging. Instead, as Lynda explained, many people take epileptic patients to the witch doctors; “the patient has epilepsy, they don’t know that epilepsy is treated in the hospital. For them they think that is a local sickness. They take to the witch doctors, they treat locally, they even have a feeling that because it is seasonal, they think there is no hospital that can treat that.” I heard that some witch doctors attempt to treat epilepsy by cutting children’s faces to let the spirits out. The inevitably prolonged nature of the disease without medication can increase the severity of the illness and therefore it’s stigma inducing manifestations.
Whilst medication is proven highly effective, in 6 out of 10 of epilepsy cases, there is no identifiable cause45. As one anthropologist of mental distress in neighbouring Tanzania puts it, “the bio-medical data is still incomplete. We may know that epilepsy means electrical charges in the brain, but complete knowledge...seems to have escaped us” (Mhina, 2009: 149). In Uganda, where there is a tendency to spiritualise the unknown, the witchcraft explanation of epilepsy is particularly fitting. There is also a historical link between the ‘superhuman’ and epilepsy, outlined in an ethnography about the ‘culture collision’ around a Hmong child with epilepsy in America (Fadiman, 1997); the Greeks called it “the sacred disease” (ibid., 29); some people with epilepsy report experiencing “spiritual passion during their seizures, and powerful creative urges in their wake”, Dostoyevsky being a famous example (ibid.). This makes room for the conception of mental and neurological disorder as a spiritual experience, which cannot be explained or cured from only one angle. A discussion of the capacity for this spiritual understanding to counter stigma will follow.
44 ‘Epilepsy Should No Longer Be Managed Primarily in the Mental Health Services’, Dr. Joan Wamulugwa Onen, Mbale 45 http://www.who.int/mediacentre/factsheets/fs999/en/, accessed 16.05
61 Spiritual Emergence
There is a ‘transpersonal’ school of thought which attempts to re-integrate the ‘spirit’ in science of the mind and body, and acknowledges what the school’s founder Stanislov Graf describes as “non-ordinary states of consciousness” as healing, transformative states.46 It is worth mentioning because Martin Ibanda and Father Kabura both referenced it as a useful understanding for treating mental health in Uganda. Father Kabura said, “It’s methodology reverts from the scientific approach, it’s like applying what I’m saying now saying ‘I don’t know’”. It is a science based on and intrigued by its own limitations, which are themselves illuminated in the Ugandan setting. For Elizabeth, as for those who attended the Butabika training session, spirituality is the chosen awareness of a core and all-encompassing power, ‘something bigger or smaller than yourself’; it is about talking to ‘the source’.
Elizabeth: Well the path that I tread on is said to be spiritual. That’s where I find my peace, that’s where I make friends and I want to go. But… I think we’re all spiritual. Me: What do you think it means to be spiritual? Elizabeth: All of us are spiritual. But it’s being aware. Not being aware that’s the difference. Everything in life is spiritual. All life’s creations, problems, are spiritually, they begin from a spiritual point to spread out. So if you talk to the source you see why all things are the way they are.
Elizabeth feels that her depression, like everything else, was a spiritual experience, a cocoon from which she ‘emerged like a butterfly’. She thinks there was ‘a design to it’, “and there still is because the ripples still linger”. From this understanding, the experience of mental illness is closely associated with spiritual cause, purpose and healing. Spirituality and its symbols offer a platform to recover, find peace and make friends, or to otherwise transcend the debasing human implications such as the bodily demarcation of difference that defines mental health stigma. Theoretically, this transcendence chimes with Turner’s conception of ‘communitas’, a “state of equality” and altered consciousness resulting from anti-structure forms of (spi)rituality (Olaveson, 2001: 93). This liminal state of being mirrors Veit-Wild’s understanding of ‘madness’ (2006: 2), theoretically demonstrating how mental illness can offer proximity to the supernatural realm and spirituality a stage to transition.
There are many other people I met in Uganda who feel the same way about their experience of mental illness. I have shown above one response in the Spirituality Training, that ‘schizophrenia is a sense connecting their
46 Documentary, ‘The Story of Transpersonal Psychology’, accessed 23,02 https://www.youtube.com/watch?v=YkD8uv-cROg
62 mind to the ‘beyond’. Joy thought the same:
Me: And where do you think they [the voices] came from? Joy: I don’t know. It came from heaven but I don’t know why it comes to me. That’s why I love Jesus so much. I have started to talk with the holy Spirit, with God, with angels in heaven.
This experience is very different from the debilitating and dehumanising experience of ‘spirit possession’, the result of witchcraft or angry ancestors, which can cement divisions and fears around the mentally ill person. Instead, from this perspective, spirituality offers a symbolic system through which people can understand and share their private experience. Bourginon, anthropologist of spirit possession, explains that “these experiences can be integrated into existing belief systems or can be used to develop and elaborate new beliefs” (2005: 385). In spirituality, there is therefore potential for novelty as well as tradition. As in Turner’s concept of ‘communitas’, spirituality is a symbolic system which exists in dialectical tension with social structure, offering a space where innovation can develop (Olaveson, 2001: 109); this recognises spiritually driven “altered states of consciousness” (ibid., 114) as an agent of connectivity and ‘newness’, working against historical ideas of ‘the other’, such as that of mental health stigma.
Conclusion
Spirituality undoubtedly influences social behaviours in Uganda (Mugisha, 2011b: 638). The spiritual openness and inquisitiveness I encountered was a central aspect of symbolic interaction. It is both “an ancient and modern practice” (Gerschiere, 1997: I), which remains relevant in Uganda whilst there are still questions unanswered. Related discourses act as a point of reference between internal and external realities; through an acknowledgement of the ‘beyond human’, inner states are regulated. This is particularly relevant to mental illness, often escaping scientific determination, experienced as a supernatural phenomenon, and imbued with spiritual meanings. Inter-translation between private and public through spirituality can ensure that some experiences are decreed transgressive, ‘strange’. This ‘taboo’ can be intimately felt and physically projected, religious discourse tracing “the meeting line of the body and the soul” (Foucault, 1976: 1649). Spirituality in Uganda is therefore one vehicle through which mental health stigma can be internally ingested and externally justified. Conceptually and anecdotally, it also offers a liminal platform from which mental health stigma can be transcended, offering mutual understanding and connection, implicitly therefore capable of countering historical and divisive ideas.
63 CONCLUSION
Mental ill health presents a significant burden to the individuals, families, communities and institutions I encountered in Uganda. Much of this burden is made up of exclusionary attitudes and behaviours towards mentally ill people, decreed ‘mulalu’ and irredeemable in Ugandan society. The label is potent and can inflict further damage on already impaired minds, bodies and identities. It is also contagious, infecting nearby relatives and health workers. Stigma has been shown to be an essential and defining aspect of mental illness itself. These parallel conditions are sustained in cyclical patterns; constraint imposed on the already constrained, ‘hostile behaviour’ inciting a ‘hostile environment’, recovery stunted and health problems further exposed. In some cases, mental illness itself was evidently caused by “problems in the world”, and prolonged by intrapersonal, familial, communal and institutional stigmatisation. This reality sits within wider economic structures based on perpetual inequalities, the overarching and underlying context in which mental illness and its attributed meanings are upheld.
There is therefore an intrinsically social element of psychological pain, which underpins the relevance of an anthropological approach to understanding mental health stigma and potential ways in which it can be countered. It is a subject of systemic and personal complexity, which arguably requires the level of insight offered by extensive ethnographic research and anthropological flexibility. As presented in the words and stories of the people I met in Uganda, the perceptions surrounding mental health cannot always be captured within the grids of psychological surveys and global reviews. This is where anthropology comes in, acknowledging the subjectivity and complexity of human reality (Midgley, 2000). The unanswerable questions and symbolic interactions surrounding problems of the mind are best considered by a research approach which is open to the challenges of contradiction.
The empirical data outlined here contributes to on-going discussions in anthropological theory about the relationship between individuals and social structures, between which this study exposes a point of unusual proximity. My findings prove that broader processes are intimately felt, enacted and negotiated, and that symbolic interactions between public and private offer a platform for structural reiteration or redirection. The bodily experiences of some mental health service users have been analysed in relation to general social factors. This fits within the conception of “lived-in and in-lived structures” (Ortner, 1989: 196), of individuals shaped by and shaping of their surroundings. Rather than meanings revolving around domination, they exist within it and negotiate themselves outwards, as in the examples of everyday realities.
64 Dialogue represents the inward-outward translation between internal and collective experiences. This was both the explicit object and implicit tool of this ethnography. Implicitly, emphasis is placed on dialogue through deference to interview or conversation excerpts throughout the discussion. Discursive analysis has enlightened an understanding of how historical ideas are embedded, embodied or negotiated. It has exposed attempts to locate a resolvable point of reference between internal drives and external realities in relation to mental health, for example evident in expressions of ‘stress’. Explicitly, dialogue has been considered as a way of countering stigma, for example observed in the mutual self-empowerment of the Butabika Recovery College and in participation observed during health sensitisation. Findings suggest that dialogue is a crucial element for social interventions around attitudes to health in Uganda. Further and longer-term research into this tactic for stigma intervention in Uganda has been recommended. It is an inexpensive health requirement, and could have a measurable impact in changing historical ideas and behaviours around mental illness. Particularly in relation to epilepsy, this could save lives.
Weiss (2007) recommends gaining in-depth knowledge of the cultural determinants of stigma in a particular setting before considering potential interventions, a research framework which has been applied here. A participatory framework for anti-stigma interventions, involving communities in their design, could also be applicable within the Ugandan setting, as proven by the success of collaborative ‘peer support’ networks such as the Butabika Recovery College. One model for this could be participatory video making. Peters et al. (2016) applied Weiss’ research framework to participatory video making amongst leprosy survivors, with a positive impact qualitatively noted across intra/interpersonal networks and the wider community. The group, working closely with research assistants and health workers, were given video cameras and taught how to capture their experiences. I have summarised the process and its potential multi-level effects in the below chart:
Triangulation of qualitative methods, including field notes, participant observation, and semi-structured interviews before and after each meeting, proved the effectiveness of this method in tackling internalised stigma amongst the participants. The project engendered a network between people sharing the stigmatised condition, allowing them to start a dialogue about their experiences. Sharing this video amongst the community, followed by a question and answer session, encouraged mutual understanding, as demonstrated
65 by relevant quotes from the participants. Similar participatory video methods have been applied successfully to mental health stigma by Buchanan and Murray (2007). This tactic could be replicated in the Ugandan setting to counter the damaging inequalities surrounding mental illness.
Beyond changing attitudes towards mental illness, research on mental health in the region is also evidently needed to ensure that healthcare facilities are adapted to the needs of the population. This need was recognised by many of the people I met in the Kabarole District. As the founder of a Fort Portal nursing institute implored;
...you really need to let the government know how bad it is. I don’t think there has been credible research about the state of mental health in this country. Maybe the leaders don’t know that there’s a huge problem of mental health.... We have not had anybody doing that kind of research to let the government know that there’s a problem. So unless the government knows they can’t come up with serious voices, they probably don’t even know if that matter exists.
Vincent believes that the realities of mental illness in Uganda need to be shared with decision-makers in order to mobilise institutions to help with this ‘huge problem of mental health’. As the first ethnographic study of mental health stigma in western Uganda, an ignored and increasing epidemic has been exposed. In one of the youngest and fastest growing populations in the world, health systems need to be able to better respond to growing psychiatric demand. Attempts to properly respond to the increasing mental health problem, to counter prevailing attitudes and institutional neglect, may offer important learnings for the future.
Further investigation into traditional spiritual beliefs related to mental illness could also improve the accessibility and relevance of mental health services in Uganda. As proven during a recent project in Mbarara, bridging institutional gaps through collaboration between hospital and healers could improve the mental health of the communities they serve. As outlined here, there is an affinity between some aspects of the medical and the traditional approaches to health. This is particularly true in consideration of mental illness, for which medicine does not yet have all the answers. This practical response to resource shortages could be supported by anthropological research, suitable for a more holistic approach to suffering and healing (Rekdal, 1999: 466) and therefore able to acknowledge the limits and capacities of both medical and traditional approaches. This could also unearth rich insights about this ‘liminal’ space, what it represents and how it is enacted.
66 During health sensitization talks, Martin would explain that the poor mental health of one person effects the whole community, and that “we are all responsible”. If the nature of society is responsible for the growing number of people for whom the world does not seem ‘home any more’, these realities should be further exposed and have a role in related intervention. This sounds amongst increasing calls to make mental health a global priority (Marquez and Saxena, 2016). By identifying and starting dialogue around an ignored health requirement, mentally ill people in Uganda can be advocated for and treated more effectively. I believe many individuals and ultimately the collective would benefit from this.
67 APPENDIX Film Stills and Key Quotes:
A mother with her 5-year-old son who has attention deficit hyperactivity disorder (ADHD). She wishes the outreach to continue as it reduces her transport costs.
A mother with her 17-year-old daughter who has epilepsy. She is a single mother of seven and is unable to afford transport or anticonvulsants to treat her daughter.
68
Mother of a 24-year-old son who has drug induced psychosis. She reported that caring for the mentally ill is a burden as the medications are expensive, the mental hospitals far, and the patients are sometimes difficult to manage. She said they need services near to the recipients within the community health centres.
Psychiatric nursing officer and two enrolled psychiatric nurses at Kibiito KCIV: “they discriminate us. they don’t consider us to be useful somehow”.
Medical Officer in charge at Kibiito HCIV: “this is something overdue, we have so many people with mental illness, we are living with it and it is not yet gone. So what I am saying, when you continue with this, we shall be able to capture a very big proportion of the population which has been neglected for some time”
69
Figure 1 showing number of patients seen per condition at FPRRH in March 2017. Condition diagnosed Number of patients
Epilepsy 297
Mania (Affective disorder) 99
Depression 148
Schizophrenia 92
Anxiety disorder 07
Childhood disorders 10
Alcohol and drug abuse related disorders 72
HIV/AIDS Induced Psychosis 17
Dementia 11
Others 172
TOTAL 936
Figure 2 showing number of patients seen per condition at FPRRH in April 2017 Condition Diagnosed Number of Patients
Epilepsy 284
Mania (Affective disorder) 185
Depression 194
Schizophrenia 103
Anxiety disorder O6
Childhood disorders 41
70
Alcohol and drug abuse related disorders 89
HIV/AIDS Induced Psychosis 19
Dementia 08
Others 24
TOTAL 953
Figure 3 showing number of patients seen per condition at Bukuku Health Centre in Q4 2016
October November December Total Q4 16 Proportion
Epilepsy 11 14 15 40 47%
Depression 3 1 1 5 6%
Anxiety 4 4 6 14 16%
Schizophrenia 4 0 2 6 7%
Bipolar 1 0 1 2 2%
Drug abuse 1 1 5 7 8%
Tension Headache 1 4 2 7 8%
Dementia 0 0 3 3 4%
HIV Psychosis 0 0 1 1 1%
85 100%
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76 ACKNOWLEDGEMENT
I am so grateful to...
Dr. Dave Baillie, for lending me some of his valuable time and extensive knowledge about mental health in Uganda. Edmund Koboah, for showing me the ropes. Dr. Alyson Hall, for allowing me to attend the second annual Child and Adolescent Mental Health conference in Kampala. Martin and all the staff and service users at the mental health unit in Fort Portal, particularly to Scovia and Eunice for hosting me in their office and teaching me about life in Fort Portal. The hospital administration at Buhinga Hospital, especially Grace. The staff and peer workers at Butabika, who so kindly welcomed me into the hospital and the country. Helena, Mauricia, Elizabeth, Tom, and Benon deserve a special mention. I hope that the network can continue with their valuable work. To Joseph Atukunda, for putting me on the right path. To my friend Elizabeth, for holding my hand in Kampala downtown. Jolly and Sefra for their infectious laughter. Rachel Lassman and the Kyaninga Child Development Centre for introducing me to the essential and remarkable work that they do. Kabati and Ronnie for their practical wisdom. My teachers, supervisors and classmates at the University of Amsterdam for giving me a comfortable space in which to explore. To my family, for supporting me in doing anything that makes me happy.
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