Access to HIV/AIDS services for disabled persons in Uganda: Problems of stigma and discrimination?

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Danish University Colleges

Access to HIV/AIDS services for disabled persons in Uganda Problems of stigma and discrimination?

Andersen, Helle Elisabeth

Publication date:

2006

Document Version

Early version, also known as preprint Link to publication

Citation for pulished version (APA):

Andersen, H. E. (2006). Access to HIV/AIDS services for disabled persons in Uganda: Problems of stigma and discrimination?.

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Masters-thesis

ACCESS TO HIV/AIDS SERVICES FOR DISABLED PERSONS IN

UGANDA

PROBLEMS OF STIGMA AND DISCRIMINATION?

The Faculty of Health Sciences University of Southern Denmark

November 2006

Student: Supervisor:

Helle Andersen Associate Professor

xxxxxx-xxxx Hanne Overgaard Mogensen

email: helle-michael@jubii.dk University of Copenhagen

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ACKNOWLEDGEMENTS

First of all I would like thank Mr. and Mrs. Langvad for introducing me to The Danish Council of Organizations of Disabled People (DSI) and their Umbrella partner in Uganda, The National Union of Disabled Persons of Uganda (NUDIPU). DSI and NUDIPU have supported the research with relevant contacts and supported the creation of links where necessary. Here I would especially like to thank Mrs. Anna Højbye.

Special thanks go to Mrs. Kirsten Nielsen in Uganda for her hospitality. Thank you for sharing your great knowledge and experience with the disability movement with me.

My sincere gratitude also goes to my informants in Kampala and Masaka. Without their cooperation this study would never have succeeded. Special thanks go to Mrs. Betty Kwagala for creating a link to TASO.

I would like to express my gratitude to my supervisor, associate professor Hanne Overgaard Mogensen for guiding me through the thesis writing.

To my husband Michael and children, Sarah, Sebastian and Oliver for putting up with my absence from home for five weeks and for supporting me all along the way.

My trip to Uganda was made possible by grants from the Nordic Africa Institute and DANIDA (Travel grants for Master’s Students), for which I am very grateful.

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6 ENGLISH SUMMARY

This master project is based on five weeks’ ethnographically inspired fieldwork in May 2006 in the Republic of Uganda. The study started out with the hypothesis that there was some kind of discrimination going on in the interaction between health workers at HIV/AIDS clinics, and PWDs coming for HIV/AIDS testing or treatment. However, problems with discriminatory attitudes towards PWDs could not be confirmed from my fieldwork observations at five different HIV/AIDS clinics in Uganda. That observation was confirmed in my interviews with PWDs and health workers. Health workers said that PWDs were entitled to the same care and treatment as everybody else. However, I observed that only few PWDs seem to attend those HIV/AIDS services, and the question arose why that is so. Problems with access and confidence (for example lack of sign language interpreters) are often reported as important issues regarding attendance at these services for PWDs. Those obstacles are there, but according to my fieldwork the physical barriers in the “healthcare system” do not seem to be as important as barriers outside the “healthcare system”.

These barriers are constituted through a complex external-internal dialectic, and created at the boundaries that a society creates between “normals” and “outsiders”. This thesis explores what it means to be infected with HIV/AIDS and/or disabled in Uganda and how this affects a person’s identity. The lower social value of disabled persons prevents them from participating in processes of reciprocal exchange in areas such as education, employment, and marriage among other things. Especially normative expectations related to sexual behaviour seem to be determinants when disabled persons “choose” to cover up their serum-status, instead of seeking care and treatment.

This thesis suggests that if one seriously wants PWDs to be included in HIV/AIDS efforts, the

“healthcare system” has to create a link to PWDs, their families and the rest of the community by using outreach efforts, because the study shows that fear of stigma prevents PWDs from attending HIV/AIDS services by themselves, even if they know that they may be HIV positive.

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DANSK RESUME

Dette speciale er baseret på fem ugers etnografisk inspireret feltarbejde i Uganda.

Undersøgelsen begyndte med en hypotese om, at der foregik diskrimination i samhandlingen mellem sundhedspersonale og handicappede på hiv/aids klinikker.

Deltagerobservation på fem forskellige klinikker, samt interviews med handicappede og sundhedspersonale kunne dog ikke bekræfte denne hypotese. Sundhedspersonalet gav udtryk for, at handicappede havde krav på samme omsorg og behandling som alle andre.

I stedet observerede jeg, at kun ganske få handicappede opsøgte disse klinikker og dette førte til en undren over årsagerne til dette. Problemer med fysiske adgangsforhold og mangel på fortrolighed (f.eks. mangel på tegnsprogstolke) fremhæves ofte som væsentlige årsager til, at handicappede ikke benytter disse sundhedstilbud. Disse begrænsninger eksisterer, men ifølge denne undersøgelse synes disse fysiske barrierer i

”sundheds-systemet” ikke så væsentlige som barrierer udenfor ”sundheds-systemet”.

Disse barrierer konstitueres gennem en kompleks indre-ydre dialektik, og skabes ved de grænser et samfund konstruerer mellem ”normale” og ”outsiders”. Dette speciale undersøger, hvad det betyder at være hiv-smittet og/eller handicappet i Uganda og hvordan dette påvirker disse menneskers identitet. Handicappede har sværere ved reciprocitet og tilskrives blandt andet derfor en lavere social værdi. Dette medfører, at de blandt andet ikke får de samme muligheder for uddannelse og jobs, endvidere har de sværere ved at finde en partner. Særligt normative antagelser om, at handicappede ikke er seksuelt aktive, synes determinerende, når handicappede vælger at ”skjule” deres hiv- status i stedet for at opsøge behandlingstilbud.

Dette speciale viser, at handicappede på grund af frygt for stigmatisering og diskrimination ikke opsøger hiv/aids klinikker, selv om de muligvis har hiv/aids. Derfor peges der på, at ”sundheds-systemet” aktivt må opsøge de handicappede, samt deres familier og nærmiljø i bestræbelsen på at inkludere handicappede i hiv/aids tilbud.

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LIST OF ABBREVIATIONS:

AIDS: Acquired Immune Deficiency Syndrome

ARV: Anti-Retroviral

DANIDA: Danish International Development Agency DPO: Disabled People’s Organization

DSI: Danish Council of Organizations of Disabled People HIV: Human Immune-deficiency Virus

ICF: The International Classification of Functioning, Disability and Health IEC: Information, Education, Education

KAP: Knowledge, Attitude, Behaviour NGO: Non Governmental Organization NSF: National Strategic Framework

NUWODU: The National Union of Women with Disabilities of Uganda NUDIPU: The National Union of Disabled Persons of Uganda

PEPFAR: USA President’s Emergency Plan for AIDS Relief PLWHA: People Living With HIV/AIDS

PWDs: Persons with Disabilities TASO: The Aids Support Organization

UAC: Uganda Aids commission

UN: United Nations

UNAD: Uganda National Association of the Deaf UNAIDS: Joint United Nations Programme on HIV/AIDS WHO: World Health Organization

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1

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INTRODUCTION

This master project is based on five weeks’ ethnographically inspired fieldwork in May 2006 in the Republic of Uganda in which the interaction between health workers and persons with disabilities was explored with a focus on HIV/AIDS. Uganda was chosen because of contacts to The Danish Council of Organizations of Disabled People (DSI) and their umbrella partner in Uganda, The National Union of Disabled Persons of Uganda (NUDIPU). However, these organizations had no political or financial interests in the project.

1.1 HIV/AIDS IN UGANDA

Uganda is estimated to have a population of about 25 million. The extreme mortality of AIDS has had an effect on this figure, which would otherwise be higher. Healthy life expectancy in Uganda is only around fifty years. Even though the HIV prevalence in Uganda is much lower than it once was, it still remains very high. At the end of 2005, UNAIDS estimated that 6,7% of all adults had the virus.¹ Uganda faced a period of civil war from the 1970s until 1986, when President Museveni and the National Resistance Movement established a reasonably stable and democratic government.

From early in his administration Museveni talked about AIDS as a problem all Ugandans must face. Uganda’s HIV response has commonly been described as “open”

in many ways, with numerous groups such as NGOs, church-based organisations, donors and self-help groups operating alongside government interventions in the country (Parkhurst & Lush 2004, p. 1916). A multi-sectoral approach is adopted and coordinated with the Uganda Aids Commission (UAC, established in 1992). UAC

1 The figures are taken mainly from women who visit antenatal clinics, so it is hard to be sure about the exact prevalence.

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10 works under the guidance of the National Strategic Framework (NSF), which identifies priorities for action against the epidemic. Persons with disabilities are not mentioned as an especially vulnerable group in the present NSF. Uganda is often described as a success story, because the rates of HIV infections have declined, but only very recently, in June 2004, has Uganda begun to offer free antiretroviral (ARV) medication to people living with HIV/AIDS. The drugs are funded by the Global Fund² and America’s PEPFAR³ initiative. According to the World Health Organization (WHO), approximately 64.000 persons are in ARV-treatment in Uganda, which is half the number of people in need (WHO, 2006).

1.2 PERSONS WITH DISABILITIS

The International Classification of Functioning, Disability and Health, known as ICF, characterizes disability as “the outcome or result of a complex relationship between and individual’s health condition and personal factors, and of the external factors that represent the circumstances in which the individual lives”. Impairments are defined as

“problems in body function or structure such as significant deviation or loss” (ICF 2001: 17). United Nations (UN) has estimated that 10% of the world’s population experience some form of disability or impairment. According to this estimation there are thus approximately 2.5 million disabled persons in Uganda, and this is simply too large a proportion of the population not to be included in the fight against the HIV/AIDS epidemic, if it should be successful. This project will focus on individuals with physical or sensory (blindness, deafness) impairments.

According to the Global Survey on HIV/AIDS and Disability by the World Bank and Yale University few interventions have directly targeted individuals with disability (Groce, 2004). One might say that they are a large and largely overlooked population.

There is a variety of reasons why persons with disabilities (PWDs) have gone unnoticed in HIV/AIDS outreach efforts. Among these is the fact that it is commonly

2The Global Fund’s purpose is to attract, manage and disburse resources to fight AIDS, TB and malaria.

3 PEPFAR (the President’s Emergency Plan For AIDS Relief) is a U.S. five year $ 15 billion global initiative to combat the HIV/AIDS epidemic.

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11 and incorrectly assumed that PWDs are sexually inactive, unlikely to use drugs and alcohol and are less at risk of violence or rape than their non-disabled peers. Stigma, marginalization, poverty and illiteracy, unemployment and the lower probability that PWDs will be considered eligible marriage partners, significantly diminish the ability of many PWDs to be able to negotiate safer sex (Groce et al., 2006). According to the Global Survey, PWDs are at equal to significantly greater risk for all HIV/AIDS risk factors. A study carried out by Save the Children revealed problems with health workers having discriminatory attitudes towards PWDs. Health workers were often ignorant about the sexuality of disabled persons believing that PWDs did not need to be tested for HIV because they could not be sexually active and thus turning them away from services (Yousafzi & Edwards 2004: 10).

With this literature review⁴ in mind, I wanted to explore the interaction between health workers and individuals with physical or sensory impairment in HIV/AIDS clinics. But early in this process it was revealed that health workers at these HIV/AIDS clinics were not ignorant and did not discriminate PWDs. However, I observed that only few PWDs seemed to attend those HIV/AIDS services⁵, and the question thus arises, why that is so? What keeps them from coming forward to be tested and treated? Problems with stigma and fear seem to be central; they are not, however, caused by the “healthcare- system”, which in this context means HIV/AIDS services. The problems seem to be in the lived life outside the “system”.

1.3 RESEARCH QUESTIONS

The flexibility of the ethnographic approach has led me to explore the following question in this study:

4 (Groce, 2003), (Groce, 2004), (Groce et al, 2006), (Yousafzi & Edwards, 2004), (Mulindwa, 2003), among others. The following databases have been searched: Sociological Abstracts (CSA), Web of Science, The World Bank, UNAIDS, SOURCE (health and disability), Uganda Aids Commission and Google Scholar.

5 This observation could be verified through quantitative research

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“Why do individuals with physical or sensory impairments in Uganda not attend HIV/AIDS services?”

Including:

• What does it mean to be disabled in Uganda?

• How does stigma and disability affect PWDs’ attendance of HIV/AIDS services?

• What could be done?

1.4 THEORETICAL AND ANALYTICAL FRAMEWORK

A phenomenological approach will be used that focuses on the experience of the everyday activities and routines PWDs employ to give meaning to their social life.

How is the significance of a deficit shaped by the human circumstances in which it exists and how does this influence the identities of PWDs? Here I will be inspired by anthropologists Benedicte Ingstad & Susan Whyte’s book: Disability and Culture and Sociologist Richard Jenkins theory about social identity.

Secondly, this study is inspired by Symbolic Interactionism, which is a major sociological perspective focusing on how people act toward things, based on the meaning those things have for them; these meanings are derived from social interaction and modified through interpretation. Sociologist Erving Goffman is categorized as a representative of Symbolic Interactionism. In his classic monograph Stigma: Notes on the Management of Spoiled Identity, Goffman analyses what he calls mixed social situations, where persons with some kind of stigma meet with so-called “normal”

persons. Analysing stigma as a relational process will be a way of understanding the forces that pattern and shape social stigma. Central will be Goffman’s “interaction order”.

1.5 SUMMARY

The above chapter presented the background of the study, formulation of the problem and objectives. The theoretical and analytical framework was introduced.

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13 1.6 OUTLINE OF THE STUDY

CHAPTER 2: The rationale for the research method and study design used is explained and the validity of the study is discussed. Ethical considerations are described.

CHAPTER 3: What is stigma and how can “identity” and “self” be conceptualized?

This will be explored by drawing upon theoretical frameworks offered by Goffman and Jenkins. Stigma related to HIV/AIDS and disability, and the interaction with health workers will be analysed.

CHAPTER 4: What does it mean to be disabled in Uganda and how does this affect your identity? These questions will be explored by using a framework offered by Jenkins.

CHAPTER 5: Sex and marriage are particularly problematic issues for PWDs and will be explored by drawing on Goffman’s “interaction order”.

CHAPTER 6: Barriers caused by the stigma process will be discussed, related to the problems of including PWDs in HIV/AIDS interventions.

CHAPTER 7: Conclusion and recommendations are presented.

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2

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METHODOLOGY

2.1 RESEARCH DESIGN

After the first review of the literature, I assumed that the problems I wanted to explore consisted of health workers’ attitudes and knowledge concerning PWDs and HIV/AIDS. One way of exploring these themes could be a questionnaire, but a questionnaire is predetermined in a way that makes it necessary to make some important decisions at the beginning of a research; decisions such as a precise statement of the problem, relevant definitions of conceptions, including how to make them measurable (Olsen 2006, 11). I had a hypothesis, but I could not clearly specify a statement of the problem, I assumed that there was some kind of discrimination going on in the relationship between health workers and PWDs but I could not demarcate it further. In its classic form, a hypothesis is a statement of the covariation between two variables (Agar 1980: 171). This notion of hypothesis did not fit at all with the kind of things I was interested in. I wanted to grasp the complexity in the interaction between health workers and PWDs. What was going on in these social meetings? Furthermore, I wanted to inquire about the meaning of that behaviour. A quantitative deductive approach was therefore no option at all. According to Michael Agar, hypothesis also has a broader sense as “an idea to check out”. At this broader level, ethnographic fieldwork is full of hypotheses at all stages of the research. Something learned in one conversation becomes a hypothesis to check in further conversations or observations (ibid: 171). This flexibility concerning my assumptions, and the fact that I wanted to

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15 understand health workers and PWDs in terms of their own definition of their worlds required a qualitative research approach

To be more specific, ethnographically inspired fieldwork was the chosen method.

The word inspired is added because normally ethnographic fieldwork in the tradition of anthropology requires a longer period in the field (Hastrup 2003: 406). According to James Spradley, ethnography reveals what people think and shows us the cultural meanings they use daily: it is an approach that leads us into the separate realities which others have learned and which they use to make sense of their worlds (Spradley 1980:

vii). A way of grasping this complexity is to set aside what we think we know and try to learn to see ‘the world’ from the perspective of others, and try to understand personality, society, individuals and environments from their point of view. As stated by Malinowski, the entire goal in ethnography is “to grasp the native’s point of view”

(Spradley 1979: 5). The most common ethnographic approach is participant observation; this is a position where both participation and observing are activated.

The conditions of my research, such as being only 5 weeks in the field, the wish to observe interaction at HIV/AIDS clinics and to learn about people’s experience related to this interaction made me choose the role of an observing participant. Not that I was the “un-involved, fly on the wall observer” (Bernard 1995: 139). I participated in activities such as packing medicine with the nurses at TASO, but mostly I observed the interactions between health workers and clients and then complemented my observations with ethnographic interviews and natural conversations. In that way I got

“accesses” to people’s thoughts and experiences with these interactions. Therefore my research contains an array of data generating methods, but according to Kirsten Hastrup, ethnographic fieldwork is more than simple techniques; it contains the whole anthropological “project of knowledge” (Hastrup 2003: 402). This “project of knowledge” contains techniques as the ways in which data are generated and become the source of wondering and exploring, it contains an analysing strategy seen as a plan for choosing and systematizing data and finally a theoretical ambition, which guides the thinking, that is, looking for new connections in the data material (ibid: 402).

According to Hastrup it is this method that gives your attention a special flexible direction towards the analytical object. In anthropology you are not just studying

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16 human beings; you are doing it in a special way and with a certain intention (ibid: 403).

By being explicit about this special way and this certain intention I intend to give the study a transparency showing readers the process which has led to particular conclusions in the study.

2.2 ONTOLOGICAL AND EPISTEMOLOGICAL ASSUMPTIONS

Knowledge is never objective; it is always situated, representing perspectives from a certain point of view (Haraway 1988). Thus I want to be specific about my ontological and epistemological assumptions in this study. Using a framework inspired by phenomenology and symbolic interactionism involves ontological assumptions regarding the social world as essentially a world constituted through meaningful and intentional action. “Such meanings and definitions are essentially processual: they are created and recreated through social interaction” (Olsen 2002: 54). Consequently this involves epistemological assumptions that this kind of research cannot provide the mirror reflection of the social world that positivists strive for, but it may provide access to the meanings people attribute to their experiences and social worlds (Olsen 2002:

58). Thus this study does not reflect what is in the external world, it reflects what I as an observer was able to conceptualize through social interaction.

Leaning heavily on Goffman, Richard Jenkins has suggested that the world as constructed and experienced by humans can best be understood as three distinct

“orders”, namely:

• The individual order is the human world as made up of embodied individuals, and what-goes-on-in-their-heads;

• The interaction order is the human world as constituted in relationships between individuals, in what-goes-on-between-people;

• The institutional order is the human world of pattern and organisation, of established-ways-of-doing-things (Jenkins 2004: 17).

This is a way of looking at a complex but unified phenomenon, the human world, from different points of view, but it is almost impossible to talk about one order without at

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17 least implying the others, because the three orders are simultaneous and occupy the same space, inter-subjectively and physically (ibid: 18). Nevertheless, I will use these three perspectives in exploring the stigma process. The individual order will be central in chapter 3 and 4, whereas the interaction order will be central in chapter 5, and finally in chapter 6 I will draw upon all three “orders”, when discussing interventions at different levels. However, as Jenkins also points out, it will be difficult to maintain this distinction.

2.3 VALIDITY

The validity of this ethnographically inspired study will be made explicit by involving three canons as suggested by anthropologist Roger Sanjek; (1)theoretical candour, (2)the ethnographer’s path, and (3)fieldnote evidence (Sanjek 1990: 395). The challenge is to judge whether my observations actually “measure” or record what I intended to “measure” (Agar 1980: 64).

2.3.1 Theoretical Candour

According to Sanjek ethnographic fieldwork involves a series of choices;…”these choices and the theoretical reasons for them need to be presented explicitly to establish ethnographic validity” (Sanjek 1990: 395). From the beginning I wanted to write a master project about HIV/AIDS in Africa, but it was only through contacts to DSI that I was made aware of the special problems concerning PWDs and HIV/AIDS. As described earlier, a literature review⁶ revealed that it might be interesting to explore the relation between health workers and PWDs. While planning the fieldwork I had to finish a detailed research synopsis and proposal. This synopsis included assumptions regarding a relevant theoretical framework. Theory about ethnographic fieldwork was very important, and Gerard Egan’s counselling theory and significant theories about stigma and disability by mainly Goffman and Ingstad & Whyte were my preparing guides. Being in the field I developed what Sanjek calls …”terrain-specific theories of significance about people, events, and places” (ibid: 396). Early in the process my first hypothesis that health workers were discriminating against PWDs had to be reassessed, but other hypotheses appeared. It is quite common in qualitative research that

6 (Groce, 2003), (Groce 2004), (Groce et al, 2006), (Yousafzi & Edwards, 2004), (Mulindwa, 2003) among others.

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18 hypotheses develop during fieldwork due to an inductive approach. The ethnographically inspired method gave the flexible approach which was needed in this process. In the final analysis I have extended the use of significant theories; especially Richard Jenkins’ theory about the internal-external dialectic of identification seems to be a good supplement to Goffman stigma theory.

2.3.2 Constructing the Field

Describing the “ethnographers” path can be seen as valuable to the readers who eventually attempt to understand and evaluate the fieldworker’s findings (Sanjek 1990:

398). To comply with validity and transparency I will be explicit about how I was connected to the field and informants. Constructing the field was a very difficult process. In a western context we are used to making plans and arrangements in advance, and I wanted to make appointments with HIV/AIDS clinics before leaving Denmark, but that was not easy. A contact to Danish development workers in Uganda was very helpful. Through them I was introduced to a key-informant at The Aids Support Organisation (TASO), who helped me with a permission to do participant observation at the TASO centres in Kampala and Masaka, but these arrangements were actually first made when I was in Uganda, so the quality of managing uncertainty and being flexible was necessary. I was aware that doing research in a well-reputed organization like TASO would influence my “findings”. Health workers were specially trained in the field of HIV/AIDS, so they knew how to behave exemplarily. Therefore it was important for the quality of the research to get access to other HIV/AIDS clinics.

One of the Danish development workers managed to get me a letter from the Uganda Ministry of Health, which gave me access to a clinic at Mulago Hospital. Less formally I visited Uganda Cares in Masaka and The Aids Information Centre in Kampala.

Getting access to these different settings made me aware of and confirmed my assumptions that the general problem was not for PWDs to get access to these HIV/AIDS services. The problem was that they did not make use of these services, although they would be treated like anybody else. Problems with discriminatory attitudes toward PWDs could not be stated from the well-trained health workers at these clinics, however, problems are reported from other health settings (Rankin et al, 2004), (Reis et al, 2005), (Yousafzi & Edwards 2004).

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19 Another important factor in constructing the field was written documents about me and my project, including information to participants, a letter of introduction from my university, a statement from DSI and research permission from Uganda National Council for Science and Technology. My key-informant at TASO helped me to get in contact with four of the PWDs (TASO clients) I interviewed, six informants with disabilities I found myself by being open to the variety of relationships I developed during those five weeks. The inclusion criteria regarding PWDs for participating in an interview was experience with HIV/AIDS testing or counselling. Most PWDs were interviewed in their homes or at their workplaces. I was aware that the TASO clients would not criticise TASO when a TASO worker was there during interviews, but I needed her to introduce me and to interpret. Therefore I asked the clients about their experience with other health settings and their first HIV test, because normally TASO does not make the first HIV test; clients have to be referred to TASO from other clinics. Health workers working in the field of HIV/AIDS, but with different backgrounds, were interviewed at the clinics. Thus this report is built upon participant observation at five HIV/AIDS clinics and formal interviews with ten PWDs and eight health workers. Informal interviews were carried out with a representative from UNAIDS and with representatives from NUDIPU and the National Union of Women with Disabilities in Uganda, NUWODU.

A short description of the different HIV/AIDS clinics is given below:

The Adult Infectious Diseases Clinic (AIDC)

The AIDC is a continuation of Uganda’s first HIV/AIDS clinic, which was started at Mulago Hospital in 1987. AIDC is a part of the donor funded Infectious Diseases Institute, whose mission is to build capacity in Africa for the delivery of sustainable, high quality HIV/AIDS care and prevention through training and research. With the support of PEPFAR, the Global Fund and the World Bank, the clinic provided ARV therapy to more than 3,000 by the close of 2005. Around 300 persons visit the clinic every day, consulting doctors, nurses and counsellors (www.idi- makerere.com/index.php).

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20 The AIDS Support Organization (TASO)

TASO was founded in 1987 by Dr. Noerine Kaleeba and fifteen other colleagues. They wanted to contribute to a process of restoring hope and improving the quality of life for persons and communities affected by HIV/AIDS. Today TASO is the largest indigenous NGO providing HIV/AIDS services in Uganda, with eleven service centres around the country. Community outreach programs are also a part of TASO’s work.

ARV medication has been offered since 2004 (www.tasouganda.org).

UGANDA CARES

UGANDA CARES´ Health Care Centre in Masaka began treating HIV/AIDS patients in Uganda with ARV therapy in 2002. The centre is an innovative partnership of the Ministry of Health in Uganda, the AIDS Healthcare Foundation (AHF), which is the largest AIDS organization in the US which operates free AIDS treatment clinics in the US, Africa, Central America and Asia, and finally UGANDA CARES, which is a local Ugandan NGO. UGANDA CARES in Masaka has more than 1800 clients on ARV and more than 3000 clients are treated for opportunistic infections, the so-called septrin treatment (www.who.int./hiv/pub/prev-care/en/ugandacares.pdf).

The AIDS Information Centre (AIC)

AIC is an NGO which was first set up in 1990 by a group of local NGOs together with the Ministry of Health to provide Voluntary Counselling and Testing (VCT) for HIV.

ARV treatment is not offered at the centre; instead clients are referred to other hospitals or organizations such as TASO. AIC has grown into a multi-faceted centre with eight regional branches in different regions of Uganda. It has served over 1,200,000 clients as of 2004 (www.aicug.org/index.php).

2.3.3 Fieldnote Evidence

The third canon refers to the relationship of fieldnotes to ethnographic text. During my fieldwork I made use of three kinds of notes; “scratch notes”, a diary and notes. Scratch notes refer to…” when a participant observer jots down a mnemonic word or phrase to fix an observation or to recall what someone has just said” (Sanjek 1990: 96). I did not

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21 use a note pad during participant observations, it did not seem ethically correct; to me it would somehow have disturbed the interaction that was going on. Instead I tape- recorded my observations and thoughts whenever there was time during the day and then wrote final fieldnotes in the evening.

Interviewing was the other tool in this fieldwork. Semi-structured interviews were chosen including interview guides to make sure that key topics were explored with informants. The interview guides were helpful to me as a novice in research. All interviews were tape-recorded and transcription was done during my stay in Uganda with help from Ugandan friends whenever necessary. Four interviews required interpretation; this says something about the kind of informants in this study and will be discussed in 2.4.4. Transcriptions were made very close to the text, but they should not be seen as “photo-copies” of the spoken interactions in the interviews, they should rather be seen as constructions of what was going on in these situations.

2.4 SUBJECTIVITY AND REFLEXIVITY

Doing ethnographic fieldwork requires a certain double perspective of the researcher’s subjective identification with, and her analytical objectification of the field (Hastrup 1991: 14). The researcher has to move from a position of proximity to a position of distance and vice versa. I was in the field almost every day doing participant observations or interviews, or both. As stated above I tape-recorded my observations and at night I wrote them down. During this fieldnote-writing-process a certain distance appeared, where there was room for more in-depth analytical reflections. So each day I had time to be in both positions; engaged in the field and reflecting upon my observations. Doing qualitative research made the impact of me as the researcher far more obvious than in its quantitative counterpart. Assuming that this kind of research is inherently structured by the subjectivity of the researcher required a dialogical perspective and reflexivity during the whole research process regarding this impact.

Questions appeared, such as whether it would be possible for me as an able-bodied researcher to carry out research with PWDs? Would my background as a nurse make any impacts? What about my age and my gender? Finally considerations concerning culture and language were obvious, including whether I as a white person could carry

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22 out research with black people? I will now turn to a discussion of these aspects of my research.

2.4.1 Researching “others”

The notion of “otherness” is complex, and the recognition of some such “others” has been a major focus of critical concern in feminist, post-colonialist, critical anthropology, anti-racist, disability and other critical researches that may be broadly defined as anti-oppressive (Fawcett & Hearn 2004: 202). Indeed one then has to ask what is actually meant by “otherness” in relation to research. In some senses all those who are the subject of research are “others”, at least from the perspective of the researchers, in that they are different in relation to the speaking subject (ibid: 203).

However, one can also define “others” in a rather different way; as “others” in relation to the dominant social power relations and discursive constructions, such as PWDs, women, people of colour and others. Fawcett and Hearn refer to this as “societal otherness”. Looking at this “societal otherness” from the standpoint of disability, Henri Stiker has analysed a fundamental issue in contemporary Western discourse on disability; the cultural assumption that equality/sameness/similarity is ideal, an assumption that exposes society’s basic intolerance of diversity and individualism. The peculiarity represented by malformation or deformation provokes a kind of panic both internal and public. According to Stiker…”this panic is rooted in the fear of the different, for we desire similarity and, even more, we desire identicalness (Stiker 1999:

9). It is all about our desire to desire like others, to be and to have like others. This passion for similarity leads in full-blown or latent form to exploitation, repression and rejection (ibid: 11). This can be seen as determinant for the designation of “otherness”.

Within disability rights movements it has been argued that non-disabled researchers cannot research with authenticity and that they cannot share the emancipatory agenda of the social model⁷ of disability (Fawcett & Hearn 2004: 209). I believe that it can lead to marginalization if only those with direct experience of an area can research it.

The problems have to be noted with the argument that struggles against oppression produce voices that can speak “the truth” about disability in a united fashion and

7 The social model defines disability as mainly a socially created problem

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23 formulate one standpoint only. More generally, a standpoint positioning, such as the one adopted within the social model of disability, has a potential to unintentionally create or reproduce the forms of “otherness” that they seek to counter. In my opinion research into disability carried out by a disabled researcher cannot on the basis of experience alone be seen to be more legitimate than research about disability carried out by a non-disabled researcher. It must be how the research project is conducted, how the participants are involved, how attention is paid to ethical issues and the extent of critical reflexivity, that have to be regarded as key factors.

2.4.2 Personal Background

According to Hans Georg Gadamer prejudices are incorporated, they are our pre- understanding. They are conditions of the possibility to achieve agreement through dialogue, a basis of understanding. We cannot release ourselves from our prejudices, but in the meeting with the incomprehensible our prejudices can be revealed (Hansen 2002: 28). I in fact met a foreign social world since I had never been in Africa before.

Mentally I had tried to prepare for this meeting; I knew I had to play the role of a novice learning new skills to be able to navigate in a new setting. Suddenly I was an

“other” in different situations. I knew that everybody, including informants would categorize me according to what Goffman calls my virtual social identity, meaning my appearance (including gender), my qualities and my occupation (Goffman 1990 [1963]:

12). I introduced myself as a nurse doing research in relation to a master degree. My intention was that the categorization as a (white) nurse would lead to some normative expectations regarding confidence, so that informants would feel comfortable in interaction situations. It is likely that my background as a nurse contributed to more intimate information regarding sexual problems related to disability, but it is also likely that simply being a “stranger”, who did not know the informants outside the space we were interacting in, made PWDs feel more comfortable. I could not tell their revelations to their family, friends or colleagues, I was not a threat. I was the

“stranger”, who according to Simmel could be “near”, because I was “distant”

(Gammeltoft 2003: 277). It is more complicated to assess my position as a white nurse in relation to my interaction with health workers. Here I may have been seen as a threat since it was easier for me to “judge” their practice and be aware of ethical issues

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24 regarding their work. This may have influenced both the observed interactions with clients and interviews. That is why it was important to talk with both health workers and PWDs to confirm coherence and take notion of bias.

2.4.3 Aspects of Culture

Hardly any other term in the social sciences has acquired so many meanings and definitions as culture. Thus it is not meaningful to ask which definition of culture is the correct one. According to Spradley, though, ethnography always implies a theory of culture, because the essential core of ethnography is the concern with the meaning of actions and events to the people we seek to understand (Spradley 1979: 5). Spradley claims that in every society people make constant use of complex meaning systems to organize their behaviour, to understand themselves and others, and to make sense of the world in which they live. Therefore Spradley defines culture as….” the acquired knowledge that people use to interpret experience and generate social behaviour”

(ibid: 5). An important assumption implied by this definition of culture is that human experience and behaviour are largely products of symbolic meaning systems.

Spradley’s concept of culture has much in common with symbolic interactionism which also seeks to explain human behaviour in terms of meanings. Referring to Blumer, Spradley points out three premises on which symbolic interactionism rests:

• Human beings act toward things on the basis of the meanings that the things have for them.

• The meaning of such things is derived from, or arises out of, the social interaction that one has with one’s fellows.

• Meanings are handled in, and modified through, an interpretive process used by the person dealing with the things he or she encounters.

Spradley illustrates the third premise by comparing culture with a cognitive map; a map we make use of in relation to recurrent daily activities. The map is a guide for acting and interpreting, but it does not compel us to follow a particular course (ibid: 7).

Parallels can be drawn to the term pre-understanding discussed above, but the misconception of regarding culture as traditions and norms we are simply born into and

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25 culture as determinating our way of thinking and acting, can make us to point to differences that hardly exists (Mogensen & Oberländer, forthcoming). Instead we should try to understand the complexity regarding culture. It does not make sense to talk about Ugandan culture as if it included a set of values shared by everyone. People are positioned in many different ways, some are disabled, some are religious, some are poor etc., “pure” cultures have never existed. What exists is a continuous process of people, who constantly negotiate, change and create their worlds (ibid: 8). This process is the issue in this study, but the complexity of culture is always seen from a certain perspective. Obliged to transparency, culture in this study is understood as social dynamic, without any specific definition, but with inspiration from the framework offered by symbolic interactionism.

2.4.4 The Role of Language

Doing field work requires inferences from three sources (1) from what people say; (2) from the way people act; (3) from the artefacts people use (Spradley 1979: 8).

However, a large part of culture consists of tacit knowledge. A way of grasping this tacit knowledge is by making interferences about what people know by listening carefully to what they say and by observing their behaviour and by studying artefacts and their use (ibid: 9). Much of any culture is encoded in linguistic form, thus language is the primary symbol system that encodes cultural meaning in every society, and language can be used to talk about all other encoded symbols. Does the credibility of data then depend on control of the local language? A survey on ethnographies found that anthropologists who speak the local language are statistically more likely to report witchcraft than those who do not. The interpretation was that local language fluency improves your rapport, and this, in turn, increases the probability that people will tell you about witchcraft (Bernard 1995: 145). I did not speak Luganda, but I was lucky that English was the official language in Uganda. All the health workers I talked to spoke English, but half of my interviews with PWDs required interpretation. Many PWDs do not attend school and learn English, so my limited use of interpretation might not reflect a general picture. This can be considered to be a bias giving a distorted view, since half of the PWDs in this study had attended school until secondary level, one was trained as a secondary schoolteacher and one had a bachelor degree. This does

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26 not, however, influence the fact that PWDs do not make use of HIV/AIDS services, and somehow those speaking English had a tendency to reveal more about their experiences with discrimination. The latter might be due to the quality of interpretation.

Thus most of my informants and I were in the same situation, using English as our second language. So constructions of meanings were done from these positions and problems with semantics must be seen as a bias in this study although I tried to explore differences of significance.

2.5 Ethical Considerations

Considerations regarding ethical issues are incorporated in the whole process with me as responsible of all aspects of the research. I was myself a research tool and a

“stranger” who had to learn to navigate in a new setting and therefore I had a sensitive approach towards the whole fieldwork including ethical issues to avoid misunderstandings.

More formally all formal informants were informed about the purpose of the research either verbally or in writing (appendix A). Confidentiality and anonymity were guaranteed. Names were only tape-recorded when informants insisted on doing so, but all names in this thesis are made up.

Permission for the study was given from the Uganda National Council for Science and Technology and The Aids Support Organization (TASO) (appendix B & C).

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3

_________________________

STIGMA

In this chapter I will explore Goffman’s concept of stigma including the role of the body in relation to HIV/AIDS and disability. A theoretical discussion of the “self”

according to Goffman and Jenkins will take place, since this will be part of the analytical framework in this study. Thereafter I will turn to a more specific analysis of stigma related to PWDs and HIV/AIDS. This analysis will be based on general literature on these topics complemented with my observations from Uganda. Finally the interaction with health workers at HIV/AIDS clinics will be analysed.

3.1 DEFINING STIGMA AND DISCRIMINATION

Goffman is widely credited for conceptualizing and creating a framework for the study of stigma. He describes stigma as “an attribute that is deeply discrediting within a particular social interaction” (Goffman 1990 [1963]: 13). His explanation of stigma focuses on the public’s attitude towards a person who possesses an attribute that falls short of societal expectations. The person with the attribute is… “reduced in our minds from a whole and usual person to a tainted, discounted one” (Ibid: 12). Goffman identifies three types of stigma: abominations of the body, blemishes of individual character, and tribal stigmas. Abominations of the body are stigmas associated to physical deformations or deviations from social norm such as physical challenges, missing limbs, or physical deformities, among others. Blemishes of individual character are stigmas associated with a person’s character, identity or simply their particular way of being. Some of these blemishes can be attributed to people in jail, drug users, alcoholics, and people with poor mental health, among others. Finally, tribal stigmas refer to the negative evaluation of particular persons due to their association with a group. Some of these stigmas are related to race, ethnicity, and

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28 sexual preference (ibid: 14). Persons living with HIV/AIDS (PLWHA) are almost always associated with the first two types of stigma because of the physical manifestations of HIV/AIDS such as skin infections, and the association of HIV/AIDS with “deviant” and “immoral” behaviours as for example sexual promiscuity (Nyblade et al, 2003: 9). In addition, many persons living with HIV/AIDS are members of groups that are already socially marginalized, such as sex workers, homosexuals, poor people and persons with disabilities. These groups of individuals with HIV/AIDS experience multiple stigmas, with HIV/AIDS stigma compounding pre-existing stigmas (known as double stigma) (ibid: 9). HIV/AIDS is then used to justify further marginalization of such persons, further entrenching deeply-rooted prejudices. Those most likely to experience HIV/AIDS related stigma commonly have the fewest resources to cope with and resist it. Thus, the ultimate effect of stigma, as noted by Goffman, is the reduction of the life chances of the stigmatized through discriminatory actions, as when PWDs, who are HIV positive do not attend care and treatment. Thus discrimination cannot be conceptualized as separate from stigma; rather it should be seen as negative acts that result from stigma.

3.2 THE ROLE OF THE BODY

The body cannot be separated from the experience of living with a disability and/or HIV/AIDS. It is via the body that people make information available to others in both focused and unfocused interaction. Although Goffman do not explicitly present his work as an analysis of the body in interaction, nonetheless his work explicitly draws attention to shared patterns and ways of using the body as integral to human agency.

He is interested in how the body enables people to intervene in, and make a difference to, the flow of daily life (Shilling 1993: 72). Goffman uses the term body idiom to denote physical gestures, positions and conduct that are recognizable as conventional aspects of everyday life, especially public life, such as handshakes, smiles, forms of dress, and so on (Howson 2004: 20). However, Goffman does not only use the term body idiom to highlight bodily conduct as an important part of self-presentation, he also draws attention to the way the body enters into and is used as a means of categorizing people and grading them according to their social position (ibid: 20). A statement from my fieldwork; “a crippled person is a gone case in Africa” illustrates

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29 experiences of the ways in which an impaired body is valued and categorized. This statement will be explored further in the following chapters. According to Goffman, the body is defined as significant and meaningful by society, but he also argues that bodies are the property of individuals, since we usually have the ability to control and monitor our bodily performances in order to facilitate social interaction: thus human bodies have a dual location (Shilling 1993: 72). This means that in Goffman’s approach, the body plays an important role in mediating the relationship between people’s self- identity and their social identity. The social meanings which are attached to particular bodily forms and performances tend to become internalized and exert a powerful influence on an individual’s sense of self and feelings of inner worth (ibid: 73). The vocabularies of bodily idiom used by people to classify others are also used for the purpose of self-classification. It is generally the case that if a person’s bodily appearance and management categorize them as a “failed” member of society by others, they will internalize that label and incorporate it into what becomes a “spoiled”

identity. According to Goffman, we tend to perceive our bodies as if looking into a mirror which offers a reflection framed in terms of society’s views and prejudices (ibid:

75). Thus Goffman draws a distinction between virtual social identity and actual social identity. The first concept expresses normative expectations of who and what a person ought to be in a given social context or encounter. For instance, we might expect a nurse to present herself as courteous and friendly, but if the nurse is not smiling or she is acting unfriendly, then this tells us something about her actual social identity. The latter refers to the social, cultural and physical attributes actually possessed by a person (Goffman 1990 [1963]: 12). In situations in which a gap or discrepancy develops between virtual and actual social identity there is a potential of stigma, but the likelihood of such a discrepancy arising depends on the visibility of the stigma. Goffman makes a distinction between a discredited person, which refers to whether a stigmatized individual assumes that his/her differentness is already known or visible on the spot, and the discreditable, which refers to a person who assumes that his differentness is neither known about by those present nor immediately perceivable by them (ibid: 14). Hence it is necessary to make decisions about whether or not others need to know about certain attributes and to weigh up the costs that may be incurred by making certain kinds of disclosures that have the potential to discredit. In these

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30 situations, we may experience the ever-present anxiety of “passing” as normal and live with the fear that the information we conceal from others may be disclosed at any moment. Most PWDs in this study are discredited persons in Goffman’s terms, since their impairments were visible on the spot. A visible impairment attracts attention wherever you go; “people stare and you can feel their eyes, it is annoying”. This is a common statement from my informants, and even though they tell that they get used to it, they feel annoyed and sad about it. The feeling of people starring and pointing will always be there, but they learn to handle it as years go by. A male informant formulates it this way: “Even though I am 49 years old I get this indisposed feeling, when I go public, sometimes I feel okay, just fight it since I am used to it, but it does not prevent the feeling to pop up. This leads to questions about “self” and “identity”.

3.3 “IDENTITY”– Goffman and Jenkins

Goffman has developed a theory of face-to-face interactions, but even though he was primarily interested in the “interaction order” (which will be examined further in chapter 5), there is a more or less explicit understanding of the human self in all of his work. This understanding of the human self will be the object of discussion in this section. Jacobsen and Kristiansen have suggested that two apparent contradictions can be identified concerning the “self” in the work of Goffman: (1) the self is viewed as an exclusive social product without a real personal core, (2) the self can to a certain degree free itself from social limitations and strategically manipulate the social situation in a direction where the self appears more favourable (Jacobsen & Kristiansen 2002: 188).

Even though Goffman in Stigma makes a distinction between “virtual identity” and

“actual identity”, as mentioned earlier, he does not reveal what he really means by the

“self”, if this “self” exists at all. He also makes a distinction between social, personal and ego identity⁸. According to Jenkins, though, these distinctions, including the virtual and actual identity …”are less rather than more helpful” (Jenkins 2004: 73). The human self in Goffman’s work should be viewed as a function of society, it is over- socialized and it is worth noticing that the phenomenologically inspired ego identity plays a less conspicuous role in Stigma (Rasmussen 1975: 100). Simply put, Goffman’s

8 Social identity: Our appearance, including personal and structural attributes (like ’honesty’ and ’occupation’).

Personal identity: Biographical facts, positive marks and identity pigs make all humans unique.

Ego Identity: Refers to our subjective experience of our own situation and our personal continuity.

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31 understanding of the “self” can be compared with the peeling of an onion; you peel and peel but never get to the core or point, only to the mask behind the mask (Jacobsen &

Kristansen 2002: 193). I agree with this critique of Goffman’s somehow vague understanding of the “self”, and since the understanding of “self” and “identity” are very important issues related to concepts of stigma, I will complement them with Jenkins’s theory of “social identity”. The ideas of Goffman and others have been influential in shaping this theory (Jenkins 2004: 18).

Jenkins proposes a definition of the “self”…”as an individual’s reflexive sense of her or his own particular identity, constituted vis-à-vis others in terms of similarity and difference, without which she or he wouldn’t know who they are and hence wouldn’t be able to act” (ibid: 27). Jenkins argues that Goffman’s distinction between social and personal identity does not reflect a reflexive selfhood. The “self” is certainly viewed as reflexive by Jenkins, but according to Goffman…“Social and personal identity are part, first of all, of other person’s concerns and definitions regarding the individual whose identity is in question” (Goffman 1990 [1963)]: 129). The self, according to Jenkins, is both individual and intrinsically interactional (Jenkins 2004: 49). Selfhood should be understood as an ongoing and in practice simultaneous synthesis of the (internal) self- definition and the (external) definitions of oneself offered by others. This internal- external dialectic of identification should be seen as the process whereby all identities – individual and collective – are constituted (ibid: 18). This discussion reflects an important perspective in this thesis, and since Jenkins is offering a broader understanding of the internals–external dialectic and the “self”, I will draw upon his analytical framework in chapter 4, where I will examine what it means to be disabled in Uganda and how it affects your identity. However, Goffman’s “interaction order”

offers a good understanding of what goes on in the social interaction between

“stigmatized” and “normal” persons in society, and therefore I will draw upon his work in chapter 5, where I will explore obligations and expectations related to sex and marriage in Uganda and the significance of these perceptions for PWDs. It will be explored how social norms are interpreted by PWDs and other social actors in social interaction. Coping mechanisms like covering and passing will be central. However,

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32 here I will continue to analyse stigma related to disability and HIV/AIDS and its consequences.

3.4 STIGMA AND FEAR

My fieldwork revealed that fear related to stigma is the main reason among PWDs for concealing their “status” and not attending HIV/AIDS-services. Marion, a 50-year-old disabled woman living in a slum area in Kampala confirms this: “I feared and it took time to step forward. I had no husband, if I then was HIV positive and “lame”, people would presume that I was also a prostitute.” It was important for Marion to stay the discreditable; therefore she tried to pass by not behaving and saying anything that could connect her with HIV/AIDS. According to Goffman, passing is the discreditable’s way of handling information control. HIV/AIDS clients have to go to HIV/AIDS services once a month to get treatment and counselling. Often they have to spend the whole day there, so “passing” can be difficult due to practical circumstances.

Marion came to a point when she got severe symptoms and therefore was forced to reveal her status, if she wanted to survive. Passing was no longer an option – she came in contact with TASO and now she says that she has learned to live positively with AIDS, but as she states: “My fellow disabled, who do not have any signs or symptoms of HIV infection, they continue to spread the infection because they fear to step forward, therefore awareness is needed.” The matter of “awareness” will be discussed in chapter 6.

I now move on to a discussion of different aspects of stigma. This discussion will be based on relevant studies and reports complemented with observations from my fieldwork. It should be noted that some of the statements offered by the literature may seem rather unvaried and stereotyped. Therefore it is important to look at stigma as a complex, but dynamic phenomenon. However, the stigma PWDs seem to fear can be compared with the general fear of stigma related to HIV/AIDS. The difference is that PWDs already belong to a stigmatized group in society, a marginalized group where most of the members are also illiterate and poor. This makes PWDs more vulnerable to HIV/AIDS (Groce, 2003). The poor seem to be blamed less for their HIV infection than the rich because people believe that the poor are compelled to engage in risky

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33 behaviour because of their poverty. At the same time, the poor face greater stigma than the rich because they have fewer resources to hide a HIV positive status and pay for non-stigmatizing care (Nyblade et al, 2003: 23). PWDs’ experiences with stigma related to their disability combined with lack of resources may cause anxiety of facing another stigma. They know what to expect. Especially for women this so-called double burden can develop into a triple burden, because they also fear to be categorized as prostitutes, as in Marion’s case. People still fear disclosing their serum-status and being stigmatized. The Ugandan population has received education/information on HIV/AIDS and most people know about modes of transmission, but since there is a gap between what people know and what, at another level, they may do it is possible for HIV/AIDS-related stigma to continue (Monico et al, 2001: 22). The association of HIV/AIDS with sickness and the fact that it is an incurable, progressive and deadly disease is important; although these assumptions are changing in relation to the prolonged lifetime caused by the effectiveness and increased accessibility of ARV treatment. In Uganda assumptions regarding HIV/AIDS seem to change from it being a “killer disease” to being seen as a chronic disease, but ARV treatment has only been available and affordable a couple of years, so this is only the beginning of a process.

Therefore, fear of disclosing one’s serum-status is still strong. The labels associated with HIV/AIDS and their consequences such as social exclusion seem to be central, but as mentioned earlier, stigma should be seen as dynamic. It changes both as an individual progresses from HIV to AIDS, and as the HIV epidemic evolves in a given community. Nevertheless, I will try to explore thematically how HIV/AIDS-related stigma generally and specifically manifests itself in relation to PWDs through particular social relations with family members; friends and the community; sexual partners,; co-workers; and health workers. The following should be seen as snapshots of dynamic processes.

3.4.1 Stigma and Family Members

Research conducted in Uganda shows that HIV/AIDS-related stigma may be particularly evident in relations with family members. Feelings of rejection and segregation are common. PLWHA report that because of the fear that HIV is easily contagious, their families refuse to share certain household utensils with them. Others

Access to HIV/AIDS services for disabled persons in Uganda: Problems of stigma and discrimination?

Masters-thesis

ACCESS TO HIV/AIDS SERVICES FOR DISABLED PERSONS IN

UGANDA

PROBLEMS OF STIGMA AND DISCRIMINATION?

Student: Supervisor:

Helle Andersen Associate Professor

xxxxxx-xxxx Hanne Overgaard Mogensen

email: helle-michael@jubii.dk University of Copenhagen

CONTENTS

ACKNOWLEDGEMENTS

DANSK RESUME

LIST OF ABBREVIATIONS:

1

INTRODUCTION

2

METHODOLOGY

3

STIGMA