Yichalaliko!!

(It Can Be Done!) Exploring HIV and AIDS Stigma and Related Discrimination in Ethiopia: Causes, Manifestations, Consequences and Coping Mechanisms

Hailom Banteyerga, Aklilu Kidanu Miz-Hasab Research Center (MHRC) Addis Ababa, Ethiopia and Laura Nyblade, Kerry MacQuarrie, and Rohini Pande International Center for Research on Women (ICRW) Washington DC USA

Miz-Hasab Research Center Addis Ababa Ethiopia

January 2004 Acknowledgements The Miz-Hasab Research Center acknowledges the USAID for funding the project via the CHANGE project of the Academy of Educational Development. Additional support was provided by the Swedish International Development Agency and GlaxoSmithKlines Positive Action program. We acknowledge the technical assistance received from ICRW: Recognition is due to Laura Nyblade who provided assistance with overall project direction, Sanyukta Mathur who diligently conducted the training on managing qualitative data using the NUDIST software, Rohini Pande who assisted with the analysis of quantitative data, Kerry MacQuarrie who, along with other team members, contributed to the development of research instruments and writing the results, and Amanda Bartelme who provided administrative support. We also acknowledge the help by Ross Kidd and Sue Clay in providing valuable facilitation of NGO workshops and interviewer training; the lessons shared with our research counterparts in Tanzania: Jessie Mbwambo, Gad Kilonzo and Peter Kopoka; in Zambia: Virgina Bond and Levy Chilikwela. This study would not have been possible without the vitality and dedication of the research team at Miz-Hasab Research Center. Aklilu Kidanu and Hailom Banteyerga were ably supported by team of research assistants who conducted the survey and interviews, entered and helped analyze data. A special thank you to: Frehiwot Abebe, Martha Alemayehu, Beza Fiseha, and Asham Asazenew. The clerical and administrative efforts of Meron Bekele and Daniel Girma also deserve recognition. Special gratitude goes to the weredas and kebeles that facilitated the research work, particularly those who willingly participated throughout the research work. The residents of Melka Uda in Shashemane Wereda, Oromia region and those in Kebele 16 Ascco and Kebele 18 Kechene Medhane Alem in Zone 5, Addis Ababa, deserve special recognition for giving their time and discussing such sensitive issues with the research team. A particular recognition is also due to those members of MEKDIM who so readily shared with us their personal stories that deepened our understanding of the experience of stigma and how to cope with it.

Suggested citation: Banteyerga, Hailom, Aklilu Kidanu, Laura Nyblade, Kerry MacQuarrie, and Rohini Pande. 2003. Exploring HIV AND AIDS Stigma and Related Discrimination in Ethiopia: Causes,

Manifestations, Consequences and Coping Mechanisms. Miz-Hasab Research Center: Addis Ababa, Ethiopia.

Table of Contents .............................................................................................................................................................1 Executive summary ..............................................................................................................................6 Chapter ONE: Introduction.................................................................................................................8 Chapter TWO: Research Methodology.............................................................................................10 Scope of the Study..........................................................................................................................10 Study Objectives.........................................................................................................................10 Training Interviewers and Data Entry........................................................................................11 The Research Design......................................................................................................................11 Research Instruments..................................................................................................................12 Respondent Characteristics........................................................................................................12 Data Analysis..............................................................................................................................13 Chapter THREE: Knowledge, Sources of Knowledge, and Stigma.................................................14 Correct Basic Knowledge...........................................................................................................14 Incomplete and Incorrect Information.......................................................................................14 Differences between HIV and AIDS.....................................................................................15 Origin of the HIV Epidemic...................................................................................................15 Opportunistic Infections.........................................................................................................16 Knowledge, Fear of Death and Disfigurement, and Stigma......................................................17 Knowledge, Fear of Casual Transmission, and Stigma.............................................................18 Awareness of the Relationship between Limited Knowledge and Stigma...............................19 Stigma and Sources of Information about HIV and AIDS............................................................20 Family and Community..............................................................................................................21 Gossip and Rumor......................................................................................................................21 Community-based Associations.................................................................................................23 NGOs......................................................................................................................................23 HIV and AIDS Clubs.............................................................................................................23 Religious Organizations.........................................................................................................24 Public Institutions: Government, Healthcare Providers, and Schools.......................................25 Media..........................................................................................................................................26 Chapter Four: Attitudes, Beliefs, Values, Judgment, Shame and Blame..........................................28 Attitudes, Beliefs, Values...............................................................................................................28 Implications for Stigma..................................................................................................................31 Implications for HIV Prevention....................................................................................................31 Judgment and Blame......................................................................................................................33 Poor and Rich.............................................................................................................................33 People Who Travel.....................................................................................................................34 Youth .........................................................................................................................................35 Gender.........................................................................................................................................36 Shame and Disgrace.......................................................................................................................40 Chapter Five: The Experience of Stigma..........................................................................................41 The Forms of Stigma and Discrimination......................................................................................41 Verbal Stigma.............................................................................................................................41 Gossip and Rumors................................................................................................................41 Insulting, Taunting, and Scolding..........................................................................................42 An Emerging Vocabulary.......................................................................................................43

Physical Stigma..........................................................................................................................45 Social Exclusion and Loss of Identity........................................................................................47 Loss of Access to Resources......................................................................................................48 Implication for Disclosure..........................................................................................................50 Where Stigma Occurs.....................................................................................................................50 Health Care Settings...................................................................................................................50 The Household............................................................................................................................52 Religious Communities..............................................................................................................53 Media..........................................................................................................................................54 Internal Stigma................................................................................................................................55 Secondary stigma............................................................................................................................56 Coping with Stigma........................................................................................................................59 An Indication of Change................................................................................................................61 Chapter Six: Summary and Recommendations.................................................................................64 Summary of Findings.....................................................................................................................64 Recommendations for the Way Forward.......................................................................................65 Care and Support........................................................................................................................65 Livelihood Options.....................................................................................................................66 Improved Information, Education, and Communication...........................................................66 Active Participation of People Living with HIV and AIDS......................................................68 Legal Protections........................................................................................................................68 References ..........................................................................................................................................68

EXECUTIVE SUMMARY
The study on HIV and AIDS stigma in Ethiopia is one of the three- country studies in Africa led by the International Center for Research on Women (ICRW) in collaboration with country research institutions. The Miz-Hasab Research Center (MHRC), based in Addis Ababa, conducted a community based research in Ethiopia from June 2001 to September 2003. The study aimed at understanding the main causes, manifestations, consequences and coping mechanisms of stigma and discrimination. It also aimed at exploring ways of reducing HIV and AIDS stigma and discrimination. The study was conducted in two sites (one rural and one urban) and included a sub-study of PLHA who kept diaries of their daily experiences for a period of six and half months. For a better insight and understanding and stigma, the study was predominantly qualitative involving 13 focus group discussions (FGDs), 15 key informant interviews, 52 in-depth and 402 structured interviews, and fourteen PLHA entry and exit interviews as well as daily diaries. The findings of the research show that: Almost all who participated in the interviews and FGDs have heard of HIV and AIDS and correctly mentioned some of the basic knowledge on transmission and prevention; some participants exhibited detailed knowledge of HIV and AIDS. Along with the correct knowledge, incorrect information and perception on transmission, prevention and care and support prevail and lead to stigma and discrimination of PLHA. Consequently PLHA are associated with death, suffering, disfigurement of body; and opportunistic infections are taken as absolute indicators of HIV infection. The source of information on HIV and AIDS include community meetings, family members, friends, neighbors, community based associations such as idir (a very important community based association which takes care of funeral expenses and is source of financial assistance), mahber (an association that brings members of a community together to discuss matters of concern and is a sign of social solidarity), civic organizations such as religious organizations and institutions, anti AIDS clubs; none governmental organizations; public institutions such as health facilities, schools, Kebele (village administration), HIV and AIDS counsels, wok places, media ( radio, TV and print out of which radio has a bigger audience). People learn about a person with HIV and AIDS through gossip and rumor and by seeing the physical condition of a suspected patient. Gossip and rumor pass scaring and stigmatizing information and lead to the discrimination of suspected AIDS patients. Religious organizations try to make people aware of the pandemic, but mainly contribute to stigma by associating HIV and AIDS with sin, anger of God and immorality. Media messages also are reported to be horrifying, scaring and create images of PLHA as ghosts and in effect contribute to stigma and discrimination. Information on HIV and AIDS that prevail in the community trigger an attitude of fear, hatred, shame, blame and disgrace. The implication of such a scenario is that it makes the disease unpreventable by promoting fatalism, lack of self-confidence and distrust among members of a community. It promotes stigmatizing attitude towards some groups of the community such as the youth, truck drivers, sex workers, soldiers, and businessmen as agents for spreading the infection

and others as if the infection does not touch them. It also is a hurdle to VCT, for people fear to be associated with HIV which in effect blocks access to care services. Women are believed to be the source of infection. Poor women, in particular, are exposed to the infection because they practice sex to earn some money for their survival. Rich men are also blamed for bringing the infection to their families because they are considered to have the resources and freedom to practice sex with multiple women. Respondents strongly agree that cultural practices, norms and values make women subservient to men and powerless to negotiate safe sex. PLHA experience different forms of stigma: verbal such scolding, taunting, naming, gossiping, blaming; physical and social exclusion such as separation from friends and families, dislocating from home or rented house, separation of household utensils, loss of identity, rights and status; and loss of access to resources, such as employment and health care. Stigma and discrimination against PLHA occurs first in the household, followed by the neighborhood, health facilities and places of warship. Families and relatives fear infection, get tired of giving care and support for their PLHA member and, at times, forcing the PLHA to leave home; neighbors consider PLHA shameful and also fear infection; friends distance themselves, for fear of secondary stigma and casual transmission from PLHA. Some PLHA suffer from internal stigma and guilt especially those who were promiscuous. They feel they deserve to be punished and to be looked down upon for they accept their misbehavior exposed them to the infection. The families and friends of PLHA fear secondary stigma and avoid them or try to hide them or else force them to leave home and seek refuge somewhere else. PLHA try to survive under such difficult circumstances by adopting different of coping mechanisms. These include crying, retreating or self isolation or changing place of residence, fighting or resorting to violence, seeking counseling, finding solace in prayer and confronting stigma by providing information and teaching the community on HIV and AIDS. Although the present scenario of stigma and discrimination against PLHA is scary as the data show, there are positive signs that stigma will reduce as people learn more about the correct ways of transmission and prevention and support can be given to PLHA without risking infection. The data also show that people are changing their attitude towards PLHA in that some are actively participating even in home based care services, where they nurse bed driven AIDS patients. The fact that infection is affecting many members of the community has made people think that HIV and AIDS is the problem affecting everybody and have realized that they have to stand in unison to fight the pandemic.

In conclusion, the research has shown that the main causes of stigma and discrimination are ignorance, fear, poverty and cultural and religious beliefs about sexually transmitted diseases. In the fight against stigma and discrimination, active and participatory education needs to be enhanced; care and support to people living with HIV and AIDS and orphans of AIDS needs to be focused on, particularly access to health care and retroviral drugs. This would reduce stigma and make VCT services desirable. People living with HIV and AIDS need to be encouraged to lead an active role in society particularly in educating the community on HIV and AIDS. PLHA need legal protection from government bodies and access to livelihood options. The gender disparity makes men and women vulnerable to the pandemic. Focus needs to be made on how to empower women to negotiate safe sex and ensure the realization of their basic human rights. This would require change in cultural norms, values and practices on gender which, in turn would require intensive and extensive community based discussions.

CHAPTER ONE:

INTRODUCTION

Ethiopia is one of the ancient countries in the world with strong traditions and various cultural groups. It covers an area of 1,221,5000 sq. km. Addis Ababa is the capital city and headquarters of the Africa Union (AU) and other international organizations such as the United Nations Economic Commission for Africa. (UNECA). The population is estimated at 63.5 million in year 2000 of which 85% live in rural areas. Ethiopia is one of the poorest countries in the world with GNP of US$102, adult literacy rate of 23% and primary school enrolment of less than 50%. The dominant religions are Christianity and Islam with a small population of animists. HIV AND AIDS has been prevalent in Ethiopia since the first evidence of HIV infection was found in 1984 and the first AIDS case reported in 1986. By the end of 2001,HIV infection claimed the lives of over 160,000 Ethiopians. [UNIDS, 2002]. It is estimated that by the year 2004, 25 out of every 100 pregnant women will test sero-positive, and one out of every 100 pregnant woman will pass the infection to her newborn. [FGAE, Addis Ababa]. According to Ministry of Health (Addis Ababa, 2002) HIV prevalence is estimated as follows: national 6.4%, rural 5.3 %, and pregnant women 11.3%. The current HIV infection is estimated to be 2.8 million and the number of AIDS orphans around 1.1 million. In most urban areas AIDS patients occupy most of the hospital beds. The prevailing low level of behavioral change further compounded the problem of HIV in sexuality. Generally the extent of the epidemic is outstripping the capacity of government health institutions to cope with its problems. Therefore, in 1998, the Ethiopian government developed a national HIV AND AIDS policy that addresses the need for HIV testing, pre-test and post-test counseling and respect for the rights of PLHA [FGAE, Addis Ababa]. The four important HIV transmission mechanisms in Ethiopia are sexual contact, mother-to-childtransmission, blood transfusion, and unsafe injection. According to the reports submitted to the Ministry of Health [Addis Ababa, 2000], 87 percent of new HIV infections are due to the practice of multiple sexual contact. Surveys conducted in several cities during the mid 1990s have documented high rates of HIV infection among commercial sex workers: 69% and 65% among commercial sex workers in Bahrdar and Nazereth respectively. In Metu, HIV prevalence among commercial sex workers rose from 5.3% in 1988 to 36.8% in 1990, and in Addis Ababa from 54.3% in 1990 to 73.4% in 1999. The practice of multiple sex is widespread in Ethiopia. One study of the urban population found that 22% of the adult male and 8% of women engage in sex with multiple partners [Mihret, Addis Ababa 1995]. Gebre et.al [Addis Ababa, 1990] observed that 53% of males and 24% of females in high school in Addis Ababa are sexually active. Adults in the age group of 20-39 are very much exposed to AIDS, the peak being in age group of 24-29. The peak age for AIDS cases is 20-29 for females and 25-34 for males. Taking eight years as an average incubation period, the peak age groups for new HIV infection are 15-24 for females and 15-34 for males. About 91% of reported. . The conditions that fuel HIV and AIDS infection include the following [Kidanu and Banteyerga, 2002, Addis Ababa]:

Poverty coupled with high rate of unemployment, prostitution and migration. Ignorance and misconception on HIV AND AIDS transmission, prevention, stigma and discrimination towards PLHA. Gender inequality making women more vulnerable to HIV infection [exposed to economic problems and no power to negotiate sex]. Cultural problems: silence about the problem, stigma and discrimination against PLHA, denial about the extent of the problem in the country, promiscuity, abduction, rape, and female genital mutilation, and the taboo attached to talking about sex within the family and the community. War and displacement: presence of a big mobile military population, huge displaced people and permanent mobile populations.

Ethiopia has been responding to the HIV and AIDS problem. It established a National Task Force on HIV in 1985. Two medium term prevention and control plans were designed and implemented between 1987 and 19896. Efforts were made to expand on IEC, condom promotion, surveillance, patient care and HIV screening laboratories at different health institutions. An HIV and AIDS Policy was issued in order to create favorable environment to fight the disease (Policy on HIV and AIDS, 1998, Addis Ababa). The National AIDS Prevention and Control Council was established in April 2000, headed by the President of the Federal Democratic Republic of Ethiopia with membership from sector ministries, regional states, NGOs, religious bodies and representatives from civil societies and people living with HIV and AIDS. The main task of the Council is to oversee the implementation of the Federal and Regional HIV and AIDS plans; examine and approve annual plans and budgets, and monitor plan performance and impact. It has a National HIV and AIDS Board of Advisors that meets on a monthly basis to oversee plans and activities. A National HIV AND AIDS Prevention and Control Secretariat is established under the Prime Ministers Office to coordinate and facilitate the multi-sectoral response to HIV AND AIDS in Ethiopia. Additionally, a Strategic Framework for the National Response to HIV AND AIDS in Ethiopia (2001-2005) has been issued [National AIDS COUNCIL, June 2001, Addis Ababa]. Finally, the government has allowed the importation of anti retroviral drugs. In spite of these actions, one of the most serious problems that is contributing to the rapid spread of HIV AND AIDS is the stigma attached to the infection. Ethiopian society, which is very much traditional in its socio cultural make up, has belief systems, power relations and psychological predispositions that are conducive to the practice of stigma. Stigma is hindering HIV AND AIDS programs and an effective response to the epidemic.

CHAPTER TWO:

RESEARCH METHODOLOGY

Putting a study into operation so as to collect reliable and valid evidence to understand the factors that underpin stigma and discrimination, to document how stigma and discrimination manifest, to examine what people do to cope with stigmatizing and discriminating experiences, and to look for programmatic ways to reduce stigma and discrimination is a complex process. This on HIV and AIDS stigma and related discrimination was conducted in collaboration with the ICRW and funded by USAID through the Change Project of the Academy for Educational Development in Washington, USA. The research was conducted in three sub-Saharan African countries: Ethiopia, Tanzania and Zambia. The MHRC in Ethiopia, the Department of Psychiatry, Muhimbili University College of Health Sciences In Tanzania, and the Zambart Project in Zambia conducted the research in their respective countries. The MHRC conducted a community based study to document occurrences of stigma and discrimination, underpinning factors, manifestations, and coping mechanisms of people living with HIV and AIDS. The community study forms the Ethiopian component of the multi-country, comparative study. Ethical clearance for the study was secured from the Science and Technology Commission of Ethiopia.

Scope of the Study

The community study examines the dynamics of stigma in two sites: one rural and one urban. Researchers examined two entire communities to learn when, where, and why stigmatizing attitudes and discriminatory practices occur and who are the subjects and the perpetuators of stigma. Researchers used a variety of ethnographic and participatory methods: focus group discussions, key informant interviews, in depth interviews, PRA activities, and a quantitative survey questionnaire. In addition to the core community study, the Center conducted a small longitudinal study with people living with HIV and AIDS. Members of MEKDIM, an AIDS support organization in Addis Ababa, maintained diaries over a six-and-a-half month period while researchers conducted in-depth interviews (both entry and exit) with them to explore their personal experiences with stigma. Study Objectives The objectives of the study were to: Understand the cultural meanings of stigma, and how these meanings translate into discriminatory behaviors Understand the underlying factors that allow stigma and discrimination to occur and be perpetuated

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Document how stigma and discrimination is manifested in various communities and institutional settings Identify institutional responses to stigma and the strategies people living with HIV AND AIDS use to deal with stigma and discrimination Make recommendations for future interventions to reduce HIV AND AIDS stigma and discrimination.

Training Interviewers and Data Entry A three-week training was given to interviewers and survey data collectors by the Centers staff, ICRW and hired consultants. The training method was multifaceted: lectures, group discussions, start and stop drama activities. The training focused on two major components of the research. (i) understanding HIV and AIDS from medical and social points of view and (ii) conducting qualitative and quantitative research. The training enabled interviewers and data collectors to see the research context of HIV and AIDS and how stigma and discrimination affect the whole effort of prevention of HIV infection. It also enabled them to collect reliable and valid data through the use of high-quality interviewing techniques. The training covered the following topics: Reproductive health, STD and HIV and AIDS The biology of HIV and its variants The difference between HIV and AIDS HIV blood test and VCT procedures Societal norms of sex and sexuality Stigma and discrimination related to STD, HIV and AIDS Research techniques; qualitative and quantitative opinion surveys Techniques of interviewing in-depth interviews: introduction, creating an atmosphere of trust, asking simple questions, directing, redirecting, rephrasing, probing, managing sensitive personal questions, focusing, amplifying, summarizing as well, as facilitating focus group discussions. Taking notes, using a tape recorder, transcribing and translating verbatim Pilot testing on skills of interviewing and transcribing verbatim

To maintain quality control, there was a heavy emphasis on the interviewing skills of the data collectors. In addition to the training, researchers were observed and given supplemental on the job training. Daily debriefing sessions helped the researchers improve their techniques and discuss the effectiveness of the interview guides and approaches.

The Research Design

The MHRC, in consultation with ICRW, selected two research sites for the community study. The rural site is Melak Uda farmerscommunity village, which is located in high HIV prevalence area in Oromia Region , Eastern Shoa, Shashemane Wereda. The urban site is Zone Five, Asco and

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Kechene Medhane Alem Areas, Kebele 16 and 18. Kebele 16 represents a mix community of industrial workers, laborers, sex workers and middle class people while Kebele 18 represents a periphery towards the rural site where the community is a mix of people with urban and rural characteristics. The two sites were selected to represent these features which characterize Ethiopian urban centers. Key informants were selected to include the most knowledgeable people who play a significant role in the communities: leaders of civil society and religions organizations, NGOs, and government institutions. The selection of people for in-depth interviews included a variety of respondents believed to represent a range of community members with an equitable representation of men and women. Focus group discussions were drawn from different groups based on background characteristics such as marital status, sex, age, and education. The quantitative survey was administered to two hundred people randomly selected individuals from each site. Fourteen PLHA members from MEKDIM (eight females and six males) volunteered to be included in the study. They were given briefing and short training on writing diaries of their daily experiences on stigma and discrimination. Ethical clearance form the Science and Technology Commission of the Federal Government of Ethiopia was obtained after meeting all the requirements that the Commission asked from ICRW and MHRC. Research Instruments The qualitative interview and discussion guides were based on an extensive literature review and were tested and modified before being implemented. The quantitative survey used a pre-coded instrument that was developed by selecting relevant questions from existing questionnaires and creating new ones to elicit information on specific aspects of stigma and discrimination. The questionnaire was piloted and modified before implementation. A loose format for recording daily experiences of stigma and discrimination was given to PLHA participants: Date and time of experience, place of experience, description of experience, cause of experience, feeling of experience, action taken to cope with the experience and overall reflection on experience. The diaries covered six and half months. Moreover, each PLHA participant was interviewed at the beginning and end of the sub study. The questions covered issues on HIV AND AIDS knowledge and how they got and their experience on stigma and discrimination. In other words the purpose of the sub study was mainly to document stigma and discrimination as actually experienced by PLHA and to see trends in stigma and discrimination across time. Respondent Characteristics All in all, from both urban and rural sites, 177 respondents participated in qualitative data collection, 402 respondents participated in the survey, and 14 people with HIV and AIDS participated in the PLHA sub-study. (Please see details below)

Research

participants

by

Urban

Rural

Total

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type In depth interview Key informant interview Focus Group members PLHA entry interview PLHA Diaries PLHA exit interviews Structured interview Number of Focus Groups

Females 16 2 32 8 8 8 116 3 (mix 2)

Males 7 8 26 6 6 6 84 2

Females 11 1 26

Males 18 4 26

100 3 (mix 1)

102 2

Females 27 3 58 8 8 8 216 6 (mix 3)

Males 25 12 52 6 6 6 186 4

Note: mix= men and women Data Analysis The qualitative data were all transcribed and translated into English and entered and coded in NUDIST software, which was used as a means to organize and manage the data. The data were then analyzed by various themes suggested by the transcripts and the objectives of the study. The quantitative data was entered and analyzed using SPSS package. The analysis plan largely consisted of descriptive frequencies and crosstabulation to examine the data by various background characteristics.

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CHAPTER THREE: KNOWLEDGE, SOURCES OF KNOWLEDGE, AND STIGMA Stigma and Knowledge of HIV and AIDS
The study showed that incomplete and contradictory knowledge can contribute to the persistence of stigma, even when people have some basic understanding of HIV and AIDS. The community study, the PLHA diaries and the quantitative survey suggest that knowledge of HIV and AIDS is far from complete, and that people have different levels of knowledge of HIV and AIDS. Correct Basic Knowledge There is a high level of correct knowledge about the basics of HIV and AIDS. The quantitative survey showed that over 90% of both rural and urban respondents had heard of HIV and AIDS, are aware that HIV can be prevented, know that a test for HIV is available and that there is no cure for HIV. About 60% of respondents mentioned mother-to-child transmission as a way of getting HIV; more than 70% reported sex with multiple partners or unprotected sex with some-one who has HIV as transmission modes. A majority of respondents mentioned avoiding premarital and multiple partner sex, and sharing sharpened tools such as razors or needles with others, as a way of avoiding the infection. In addition to basic information about transmission and prevention, the in-depth interviews and focus group discussions revealed that at least some people are also aware of further details. For instance, some respondents know that those living with the virus can live long lives and work, particularly if they receive some care and support. Some recognize that the related to body waste can be possible signs of AIDS, but also realize and argue that a blood test is necessary to confirm that an individual is HIV-positive, since opportunistic infections of AIDS can also occur without a person having HIV. In one focus group discussion a rural female participant said: The signs are fever and diarrhea but these signs can be seen with other patients too. Thus, we cannot identify a person who has HIV with the signs only but he should have to take a blood test to know he has HIV.

Incomplete and Incorrect Information While basic information is good, this co-exists with a high level of incomplete and incorrect information about the difference between HIV and AIDS, the origins of the HIV epidemic, and opportunistic infections. Many respondents think that HIV and AIDS are one and the same. Many also think that HIV and AIDS are sent by God to punish sinners. The survey data shows that about 15% of respondents think that HIV can be transmitted through kissing; 30% think it can be transmitted through mosquito bites and about 10% through sharing

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food, and 7% by sharing toilet and there is no significant variation by residence. This lack of knowledge fueled by HIV-related stigma, contributes to continuing stigma and discrimination. Differences between HIV and AIDS Although most interviewed people have heard of HIV AIDS, most of them do not make a distinction or are unclear of the distinction -- between living with the virus and being an AIDS patient. As a female participant in a focus group discussion that included both males and females said: I think HIV and AIDS are similar. I do not know if HIV and AIDS are a different. In the quantitative survey, only one-third of both urban and rural respondents knew that there was difference between HIV and AIDS. At the same time, the data suggest that some are aware of the difference, though this awareness seems concentrated among younger, more educated or more aware sections of the population. The survey showed that almost half of all respondents age 19 years or younger knew that there is a difference between HIV and AIDS, compared to less than a third of respondents age 40 years or above. A female rural informant who is a member of an anti-AIDS club, and therefore presumably well-informed, said: It is possible that a person can have the virus and look healthy but when he is ill it is AIDS. So a person with the virus can spread the virus to other people unknowingly. HIV is the stage of having the virus and AIDS is the stage of showing illness. We can live long with the virus, but when it becomes AIDS we die quickly. It is not surprising that most people make no distinction between HIV and AIDS, as most individuals knowledge of a person living with HIV is limited to the stage where an infected person shows syndromes of AIDS, namely, physical symptoms such as body waste, continuous diarrhea, vomiting and fever. The relationship to stigma is clear: fear of stigma and discrimination makes people reluctant to disclose their HIV-positive status until it progresses to full-blown AIDS which cannot be hidden. Peoples perception of HIV-positive people then, is that of some-one at the terminal stages of AIDS, unable to do anything and on the verge of dying. Origin of the HIV Epidemic Peoples misconceptions about the origins of the HIV epidemic themselves create opportunities for stigma and discrimination. The two most common beliefs about the origins of HIV are that it came from foreigners, and that it is a punishment from God. Several respondents said that foreign countries and their bad behaviors are to blame for being the source of HIV AND AIDS. As one urban male respondent explained:

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Some think that misuse of sex or unacceptable sexual relation like homosexual relation, sex with animals, drug addiction, and research on viruses are mentioned to be the causes for the emergence of the virus. And these activities are associated with countries in the developed world. Respondents also often blamed sex workers for having sex with foreigners to get money and then transmitting the virus to other Ethiopians. A large proportion of respondents think that HIV and AIDS was sent by God to punish people for morally unacceptable behavior. As a rural male informant explained: It is written in the Bible and in the Kuran that we should be in one to one relationship. This means we should not have sex with many partners before marriage. But people do not obey the rules of God and are making sins by having sex with many partners. Casting blame in this way serves to increase stigma towards groups who are considered to practice behaviors associated with HIV that are deemed unacceptable, In other words, foreigners, sex workers, and others who may deviate from socially and morally acceptable norms of sexual behavior. It also serves to make people fatalistic, and to believe that they cannot influence whether or not they get infected. A prominent rural priest said: It is God who brought it on us. It is God who knows where from he brought it. What God has brought; God takes it away from us. Opportunistic Infections The qualitative interviews and discussions indicate that respondents are largely aware of opportunistic infections occurring once AIDS sets in, and know the names and symptoms of common opportunistic infections such as diarrhea, herpes zoster, and tuberculosis. While, as mentioned above, there is some understanding that the symptoms of diseases that are opportunistic infections of AIDS do not necessarily equate with a person being HIV-positive, most people do identify and equate the symptoms of such infections with HIV. A rural male participant in a focus group discussion noted: We believe that a person is infected with HIV if he is under weight, show skin wounds, his hair becomes thin, mostly he is in bed and is with diarrhea. When someone passes away showing these symptoms, we think that he must have had HIV. This equation of symptoms of opportunistic infections with HIV may partly result from a lack of understanding that an individual can have tuberculosis or diarrhea or any of the other infections without having HIV. However, the data suggest that, at least in part, this lack of distinction is because of the stigma associated with HIV.

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Fearing the stigma and discrimination that result from disclosure of an HIV-positive status, those with the virus dont disclose their status. Thus, the only way that the community and family discover a persons HIV status is when AIDS sets in and the opportunistic infections multiply, in other words, precisely through the symptoms of opportunistic infections. This, in turn, increases stigma around these symptoms themselves. An urban female explains, The community does not have any means to know PLHA if they do not disclose their HIV status, but when they became severely ill and when they show some body changes and different signs like becoming thin, lose of hair and wound on the body, the community then suspects PLHA. In other situations, the stigma associated with HIV means that people with HIV, and health-care professionals themselves, may try and avoid the stigma by proclaiming their symptoms to be those of TB or other opportunistic infections rather than HIV. This, then, perpetuates the incorrect equating of symptoms of opportunistic infections with HIV. According to one urban female participant: I know the symptoms of the disease because I treated her. At that time the disease did not spread like this.... First it was said TB. The patient does not recover after taking all the sixty injections prescribed. The patient continues taking different kinds of medicine and treatments but does not get cured. The tongue of the patient starts showing cracks. The patient some times gets better and sometimes gets worse and finally dies after showing serious body waste. Knowledge, Fear of Death and Disfigurement, and Stigma Incomplete knowledge interacts with a very real fear of the certain disfiguring and painful death from AIDS to increase and perpetuate HIV-related stigma. Most respondents over 90% in the quantitative survey know that there is no cure for AIDS. However, the qualitative data show that many people also dont know that, even though there is no cure, those with HIV can continue to live a long life before AIDS sets in. As an urban female participant said: When you catch HIV it is considered as you are a dead person. Your age of living is shor. This incomplete knowledge contributes to peoples fear of HIV and AIDS. As an urban male school-teacher said: People are scared of HIV for sure. Other diseases kill too. But HIV makes you feel hopeless. If someone is infected with HIV, he has no hope at all. This is because it is not curable and does not have medicine. You see there are diseases, which are sexually transmitted such as gonococcus, cancroids, but they are not fatal and people are not afraid of them. They are easily treated, but HIV is the end to life, no medicine to treat with. In addition to the fear of death, people fear how AIDS disfigures a person. A rural female explains:

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This disease is not like other diseases. It changes somebody's physical appearance and makes him look ugly. It makes a person very thin, lose hair, make a person face dark and pale and wound on the body and on the lips. Due to this people fear the person while they see him. Given this fear, people interpret the limited information they have to the best of their abilities to decide how to protect themselves. Often this protection takes the form of shunning, isolating or otherwise stigmatizing some-one with HIV, as described by a female participating in a (rural) focus group discussion: When it is said a person is infected with the disease, people run away from the infected person. Knowledge, Fear of Casual Transmission, and Stigma Accompanying the high level of overall awareness of HIV and AIDS are misconceptions about transmission of HIV, and a consequent belief in casual transmission. In the face of incorrect and incomplete knowledge of HIV, casual transmission is one way that people try and make sense of a rapidly spreading epidemic. People combine what they do know for instance, that HIV can be transmitted sexually with their everyday situations to understand transmission. One result is a surprisingly large number of respondents who believe that HIV can be transmitted through livestock or produce that has come in contact with a person with HIV or any bodily fluids of someone who has HIV. According to an urban male, They say eggs transmit the infection. They say do not eat eggs since they can be infected...Hens are everywhere in town, hotel, bars restaurants. The people working there use condom and throw it in the open field. Hens eat this. If the condom has the virus the hens get infected because they swallows it with this thing [sperm]. The virus goes to the egg, and if we eat raw eggs we get infected. So people say do not eat raw eggs. On the same issue, a rural male explains, It is quite possible that a person with the virus can use syringe to infect the orange fruit. When we eat the infected orange fruit we can be infected. Another urban male adds, The problem with those who sell milk is that if the family is suspected that one member has the HIV AND AIDS, they think that the cows eat the grass in the compound and the condom thrown in the field after use could have contaminated the grass. So if children drink milk produced in such families the children can be infected.

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The quantitative data also show that a significant minority (about 30% or more) believe that HIV can be transmitted through casual means such as sharing a toothbrush or mosquito bites. This persisting belief in casual transmission combines with inadequate knowledge and the fear of death to result in people with HIV being feared. As one male informant said: I fear people living with HIV and AIDS because AIDS might be transmitted through clothes and shaking hands...We fear it might be transmitted to us through touching their clothes and through sweat. A resulting consequence is stigma and discrimination, such that people are unwilling to greet, eat with, or rent their homes to some one they suspect has HIV. A rural female explains, Some people in this community believe that HIV AND AIDS transmits through kissing, shaking hands, sleeping together and eating together with an infected person. Due to this they isolate the person from the community. For example, if they see him passing doing the same way they are passing, they change their way not to kiss and shake hands with him.... Because they are assuming that it is transmitted through breath, shaking hands, eating together with an infected person. A rural male adds, Of course when I see the condition of that person, I will hate him and so I will not rent him my house. You see if he rents my house we may eat or drink together. There are so many things that may bring us together and I might be infected. Awareness of the Relationship between Limited Knowledge and Stigma The data suggest that people are well aware of the relationship between poor knowledge and understanding of HIV and AIDS, and HIV-stigma. As a participant of a focus group discussion with adult, urban females said: The disease is very frightening and people who have less awareness isolate you. Others echo this theme, including how the lack of knowledge of HIV transmission leads to people isolating and shunning those with HIV. According to a rural female participants: There are fluids that come out of the body like diarrhea and vomit, and high fever. Whether a patient is a woman or a man not only other people but also the family hates the patient. This is because of lack of awareness. They do not know that it wont be transmitted through these fluids unless there is blood and sexual contact. On the same issue, a rural male participant explains,

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You see, people do not know about the ways of transmission. They do have high fear for PLHA. If some one is infected with HIV, they isolate him. They discriminate him. They have little knowledge of the disease. Respondents also think that getting more and better up-to-date information and knowledge about HIV can contribute to lessening stigma and discrimination. They compare it with the stigma that existed around other diseases in the past, and that has decreased as people began to understand these other diseases better. As one rural male schoolteacher stated: By being close to a person with leprosy, they might get the illness. So they distance themselves from people with leprosy. However, people's understanding is growing and their attitude towards leprosy is changing. Now children of other people are going to the same school with children of people with leprosy. What worries people nowadays is HIV. This is because they do not have good knowledge about the disease. HIV and AIDS patient is automatically discriminated and the patient will not disclose that he/she is HIV positive. Where people do have more information, respondents report that this knowledge helps the community interact with people with HIV in a less stigmatizing way. One frequent example of a forum that imparts education and allows people to work with those with HIV to decrease their social isolation are the idirs, [community based associations for assisting during funeral and mourning] as illustrated by the quotes of an urban female below. In our area people do not isolate people living with HIV AND AIDSthey are the members of idir and when we meet them on the road we greet them by kissing and shaking hands. Instead of avoiding them we are close to them and we have to show others that being HIV positive does not make people different. And we show them that one can live with them together. We eat and chat together and moreover in recreational places we enjoy ourselves together. On the same issue, an urban male adds: Now for example there is idir in our areaWe persuade families to have free discussion especially about sexual relations with their children who have reached the age where they can practice sex. We also teach them that they do not have to avoid those who have HIV. They have to be close to them and be examples for others by working jointly with them to protect people from being infected with the disease.

Stigma and Sources of Information about HIV and AIDS

The data shows that there are multiple sources of information on HIV and AIDS. These include friends, family, community meetings, public gatherings, community-based associations such as idir, mahber; civic organizations such as anti-AIDS clubs, religious associations and institutions,

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and NGOs; public institutions such as health facilities, schools, and other work places; and the media (radio, TV and print). Family and Community Families, neighbors and friends are important sources of HIV and AIDS information in both urban and rural sites. Friends are among those that people with HIV disclose to, and thus discuss HIV and AIDS with. The survey data shows about 38.5% of urban respondents and 34.7% of rural respondents learned of HIV and AIDS from friends and neighbors. Community meetings are mentioned as important forums for disseminating information on HIV and AIDS, including Kebele (village leadership) meetings to inform people about HIV and AIDS and community meetings held by teachers and health professionals. As mentioned earlier, the idir is an important community forum for exchanging ideas among members. As one (urban) female respondent put it: There are 50 Muslim women who come under one idir including me and we have a meeting on the first day of every month and there is no other issue we talk about other than this thing, the youth are being wiped out. Gossip and Rumor Gossip and rumor are a very common source of information, particularly for people to gauge whether some-one has HIV. Gossip is invariably associated with stigma. Because of the stigma associated with HIV, those who are HIV-positive rarely disclose. At the same time, there is widespread fear of HIV, knowledge of HIV being associated with what is considered unacceptable sexual behavior, and an association of certain physical symptoms with HIV. Thus people gossip and rumor about the HIV status of those considered to have deviant behaviors as well as those who suffer from certain illnesses or disease symptoms. These rumors, in turn, increase HIV-stigma for the person with HIV as well as close family. As one rural female respondent explained: Most of the time a husband gets severely sick and dies with thin physical appearance and loss [of] hair and diarrhea. At that time the people gossip that his wife will die soon. Therefore if a husband dies first after being severely ill, people gossip that his wife will die soon. When signs of opportunistic infections appear, they elicit the most gossip, rumoring, and assumptions about the sick persons possible HIV status. As one rural female respondent bluntly said:

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The people get shocked when they see people with these signs. If a person has passed away of TB in our community, people will say it is AIDS. In our community they do not wait till they get confirmation from blood test. If the patient shows these signs, say if he has a wound on his body and around his lips, loses his hair and weight and suffers and looks disfigured and is in bed, it is said that it is AIDS. A TB patient has also thin physical appearance and a hard cough. It is related with AIDS and people assume that a TB patient has AIDS. Sometimes the very person who may accompany some one for an HIV test may disclose the fact that this person went for an HIV test or the HIV status itself. An urban female participant explains that, When the person goes for a medical check up, the other person that accompanied him also knows about the disease and disseminates the information. In this way we know about a person with HIV AND AIDS. In an effort to protect themselves, sex workers exchange rumors or assumptions about their clients, either based on the clients perceived behavior or on gossip about that client from some-one in the community. As an urban female sex worker put it: If the person is not our client we hear a rumor from his neighbors, but if he is our client his activity will make him known. Moreover, we have clients who come from far places even if he looks healthy when they refuse to use condom, I myself will suspect he is positive; and if such kinds of people come we refuse his offer. Gossip and rumor also form a part of the suspicion that exists in rural areas about immoral behaviors associated with urban areas, visits to towns, and urban people who may come to rural areas. Those in rural areas believe that those who go to urban areas and fall sick inevitably contract HIV and AIDS. The urban areas and people concerned are shunned, as explained by a rural female informer as follows: And there is a rumor that if a person goes to an urban area and dies there, it is said to be HIV and AIDS, although no one is sure about it... There will be a gossip that this person had passed away due to AIDS because he had been in the town...The rumor spreads outAnd they even decide to avoid the places the deceased person used to go...The people who live in the rural area do not go there, once they are told. They take care of themselves by not going to such a place...They talk that the deceased person has this and that...Some will definitely gossip about the patient because he was skinny. But they are not sure whether he had the disease or not. Certain countries require that Ethiopians traveling to these countries undergo a blood test. The person is then not allowed to travel if he or she tests HIV positive. Many respondents were not only aware of these rules, but discussed how they contributed to gossip and consequent stigma and

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discrimination against anyone who is denied a visa or has to change international travel plans for any reason. An urban female states: And some times people gossip about a person after they become certain about a person's HIV status. That is when a person starts a process to go abroad and if he/she fails and if he/she does not get a visa, people gossip that he/she has HIV that is why he/she did not get the visa. Respondents recognize that such gossip is widespread. Several of those interviewed even noted that the tradition of coffee-drinking contributes and that coffee time is conducive to gossip. As one female rural respondent said: The speed of the rumor is same as the Ethiopia super star runner- Haile Gebre Sellassie. It goes fast from one person to another and people talk at coffee time and many other people can get it within a night. Community-based Associations NGOs NGO operated clinics and organizations are mentioned as important sources of information on HIV and AIDS. One NGO mentioned often is ACCORD, which works closely with the local government through the Kebeles on HIV and AIDS education in Shashemane and the surrounding rural sites. Addis Ababa informants mentioned Mary JOY Aid through Development as an NGO that runs clinic catering for HIV and AIDS education. It also supports people living with the virus. While on the one hand, these NGOs provide much-needed education and support to those with HIV, at the same time, the community suspects those who are regular visitors of organizations known to be HIV positive. This, indeed, presents a dilemma for such organizations. As one urban female respondent said: The community knows that they are AIDS patients because they were getting treatment from Mary Joy. And I know them because they used to come to the kebele office because they need the kebele identity card in order to get free medical treatment and some amount of money, which Mary Joy provides to HIV and AIDS patients per monthI think they might not want to be known for having the disease but we get informed because the patients we know tell us about the others who have the disease. Thus, we suspect them. HIV and AIDS Clubs

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There are a number of local HIV and AIDS clubs run by adults and by youth for youth. These are among most prominent civic organizations that provide education and information on HIV and AIDS. Their activities, in both rural and urban areas, include training club members about AIDS syndromes and signs, disseminating information about the seriousness of the disease, ways of transmission and prevention, the consequences of HIV and AIDS, risky behavior, and on not stigmatizing those with HIV. The clubs use discussions, songs, newspapers, pamphlets, and drama to disseminate their messages. While this study did not evaluate the effectiveness of the activities of such clubs in combating stigma and discrimination, respondents mentioned some ways in which they thought that these clubs are successful in spreading accurate information about HIV and encouraging nonstigmatizing discussion of risky behaviors and other issues related to HIV transmission and prevention. According to a rural female leader of anti-AIDS club, Since the formation of the club, the youth have shown a lot of changes....The youth particularly girls were frightened to discuss the matter especially on sexual relation. Now they come to us and ask us openly about one to one sexual relation and how to prevent the contraction of the disease. This is a change by itself. Religious Organizations Religious groups and institutions, both Christian and Muslim, are active in education about HIV and AIDS in both urban and rural areas. For the most part, these institutions focus on the sexual transmission of HIV. The information from religious organizations is largely focused on urging people to avoid pre-marital sex, extra-marital sex, and to follow religious teachings in this regard. The way these messages are sometimes transmitted may contribute to peoples incorrect understanding of the origins of HIV, and exacerbate stigma and discrimination, by labeling HIV as punishment from God. A rural female on this issue says, They say 'we used to tell you to behave and follow what is said in the Bible and Koran; now because of your behavior the worst thing has come to you; this is according to the word of God; not something incidental. We have already told you and now it is a serious one and you need to be careful.' This is what is preached in the mosques and the churches. A rural male adds, The churches teach about HIV AND AIDS in relation to the question where HIV came from. In churches it is said that it is the anger of God. God has given us his rules of behavior in the Old and the New Testament in the bible. And it is written in the bible that people should have one sexual partner through marriage. And the 24

religious leaders who are in the church are preaching this word of God and tell us to take care of ourselves from AIDS. If we do not take care of ourselves, the anger of God falls on us and we get cursed. That is what the church preaches to the people. At the same time, however, there is some evidence that religious organizations also play a positive role in encouraging people to be compassionate, not to stigmatize, and to treat those with HIV well, as illustrated by these quotes from Christian and Muslim religious leaders. A priest states, I will give him care. I will not be frightened. It is through relationship [sex] that the disease gets transmitted not through eating and chatting with the patient. It is sexual intercourse that causes transmission. It is possible that razors or needles can transmit. It is God who brought us this. I cannot throw away my relative. A Muslim leader adds, When I heard people dying due to AIDS I was shocked. I was shocked very much. A human being is a human being and we have to help a person ill with this disease and also feel sad about the dead child, too. Public Institutions: Government, Healthcare Providers, and Schools The data show that the government administrative bodies at all levels of administration are involved in the dissemination of information on HIV and AIDS to some degree, including all government structures such as Kebele (village), wereda (district), Zone, region, and federal structures. These organizations prepare educational seminars on HIV and AIDS, organize youth to teach the community about HIV and AIDS, and disseminate messages about HIV and AIDS in various ways including community meetings with women and men in urban and rural areas. In some cases respondents noted the role of the kebele administrations in enabling people with HIV to get housing when they are discriminated against by others in the community. Health care providers are also a key source of information on HIV and AIDS. Some rural and urban respondents report that health professionals inform and teach about HIV transmission and prevention, talk to youth about sexual behavior, discuss risky behavior both sexual and sharing contaminated medical equipment, and about not stigmatizing against those with HIV. As one urban female respondent explained: There is education given about HIV AND AIDS in the health center that the doctors give before they start their work. They tell to people about the prevention and transmission methods, not to isolate and fear PLHA. And they teach in the health

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center that HIV AND AIDS does not get transmitted from one person to another by shaking hands, kissing, eating and sleeping together with an infected person. The survey data shows 40% of urban and 44.6% of rural respondents reported that they learned of HIV and AIDS from health providers. Schools are mentioned as a source of information particularly for youth in urban and rural areas. Schools organize mini media events, and some have special HIV departments. In other cases, young people learn about HIV from their schools, and parents hear the information from their children. The survey data shows that about 38.5% of urban and 34.7% of rural respondents learn of HIV and AIDS from schools. At the same time as being sources of information on HIV and AIDS, as well as supportive of those with HIV in some cases, the government administration at various levels, health care workers, schools and other public institutions are also a venue for stigma and discrimination. This will be discussed more fully in a following section on the experiences of stigma. Media The media is mentioned as an important source of information, including radio, TV and printed materials such as leaflets, posters, newspapers, etc. Almost all urban respondents listen regularly to radio or TV and report that they get a substantial part of their information on HIV and AIDS from these media. Even rural respondents mention media as a constant source of information. The survey data shows that 94.5% in urban and 70.8% in the rural site learned of HIV and AIDS from radio; 56.5% of urban respondents and 17.5% of rural respondents learned of HIV and AIDS from TV programs; 47% of urban respondents and 25.2% of rural respondents read newspapers. (Note that the rural site is on the main high way and does not represent a typical rural area and the number of radio and TV attendants and reading newspaper should be taken with caution) While many respondents approve of the fact that information is readily available from the media, others feel that the way the media portrays HIV and AIDS, and those who are HIV-positive, creates negative, frightening stereotypes that serve to increase stigma and discrimination. As one urban female respondent said: The reason people isolate a person living with HIV and AIDS is because they fear HIV and AIDS. The reason they fear HIV and AIDS is because they hear from different mass medias i.e. radio and TV how horrible this disease is and how it is wide spread in the country. Another cites her experiences, which echo the same theme as follows: When I watch TV and listen to the radio to HIV AND AIDS program presented in the form of drama, the message of the drama scare me and makes me cry...In the drama they show how the disease makes people suffer and change their physical appearance and look. It disfigures the face of the patient, changes the color to dark and pale. This makes me worry much.

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Thus, while media may be a powerful means to disseminate a lot of information very rapidly, clearly the way in which the messages are framed need to be scrutinized to ensure that the messages themselves are not stigmatizing, and that they do not feed into existing misconceptions of HIV -- particularly HIV-prevention and transmission that lead to stigma.

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CHAPTER FOUR: ATTITUDES, JUDGMENT, SHAME AND BLAME

BELIEFS,

VALUES,

The community believes that people get infected [with HIV] due to their deviant behaviors when they are having sexual contact with different partners. They think that a person who is infected is a promiscuous person. Thus, HIV and AIDS is the anger of God...Due to this the infected youth does not want to disclose to his family because he knows that his family will kick him out of the house. The community also isolates and segregates him. (Rural female participant)

Attitudes, Beliefs, Values

The understanding that HIV is transmitted mostly through sexual intercourse fuels the belief that a person contracts HIV because of his/her unacceptable and immoral sexual behavior. According to a rural male participant, Now in our country to die of AIDS has become shameful. People make stories about it that belittle the deceased and his family... This is because it comes through sexual intercourse. Promiscuous people get it... A person who gets this disease is a delinquent. People who get HIV are generally assumed to have misbehaved, to have engaged in inappropriate behavior, and therefore to be deviant because they have not upheld societal norms, and in particular Gods teachings. People who get HIV are assumed to be bad people, as explained by a rural male participant as follows: AIDS infects the bar ladies and the males get infected if they are having sexual contact with bar ladies. The bar ladies are exposed to AIDS because they are having sex with many people. It is because people are having sex with bad people that AIDS will infect them. Bad people are people who are promiscuous and who have deviant behaviors - like commercial sex workers. And people who are having sex outside of marriage, who are not loyal to their marriage. It is also commonly believed that in both communities that promiscuity is widespread. A rural female participant explained this in the following way: In this area people go [have sex] as they wish, though they fear being infected. They think that it is so because the person is devoted to the world of pleasure instead of listening to the word of God.

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Women in particular mention how men are promiscuous. Even when they know their husbands are having sex with other women, they are powerless to do anything about it. As this rural female informant explained: Because my husband is promiscuous, I tried to stop my relation with him. I told him that I am old and that I do not want him. However, he might come drunk or having some other thing and we women do not have strength to defend ourselves. However, I am still trying. I see condoms in his pocket on some days, but he has never used them with me. There are strong religious undertones to these attitudes and beliefs, which lead to PLHA being labeled as sinners. As explained by a rural male participant: When people heard that this disease doesn't have any medicine, and it is transmitted through sexual contact, people started thinking about people living with HIV and AIDS as sinners, promiscuous people, and criminals. Expressed in both urban and rural sites, and across religious faiths, is a strong belief that HIV is a curse from god for sinning. God, according to an urban participant, is angry and out to teach us a lesson. I think they got HIV due to the anger of God. He wants to teach them. When God punishes someone he might want to give lesson to others. God is punishing not only individuals, but also society, for their sexual transgressions by giving them HIV and AIDS. God has done this in the past, and is doing it again. As explained by this urban male: Because human beings were breaking God's law during the time of Noah, he destroyed them all. And the same is true during the time of Lot where there were homosexuals. God punished them with fire. The proof that HIV is a sign from God, that God is teaching mankind a lesson for their promiscuity, is borne out in the fact that there is no cure. A rural male explains, This disease is the result of our sin and distancing ourselves from religion. If we did not commit sin, this thing would nor come. God is full of mercy if we are closer to our religion. If we do good things and obey God's rules, there will be no disease that has no cure. That HIV is a punishment not only on individuals for their own immoral behavior but on society as a whole because HIV can be transmitted by non-sexual means is evident. As one rural male explained: HIV and AIDS can affect people with other materials not only with sexual contact. A person can be infected with contaminated razor while he shaves his beard or while he uses someone's nail cutter. Due to this I believe it is a curse that comes from Allah.

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Because HIV is so closely associated with sin, beliefs were also expressed about how PLHA are being punished for worshipping the devil or evil spirits or even that PLHA are doing the work of the devil by spreading HIV. According to a rural female, People believe that if a person does not sacrifice to the god he worships as he used to do before, he will be ill. And they think that if a person is infected with a disease like HIV and AIDS, it is taken as a punishment sent from the evil spirit that he used to worship. A rural male on the subject adds, Those who do not follow the church practice, adultery and disease of this sort come from anywhere and attack them . What I think about transmission is not being limited to one; like animals and Sodom, people become promiscuous; so the sexual disease of one can be transmitted to others. They do not say they have the disease or can contract the disease because they are doing the devil's work. These beliefs are strengthened and reinforced by the preaching and actions of religious leaders and congregation members of all faiths. A rural male explains: Those religious leaders give advice to the people to prevent themselves from HIV and AIDS and to be in one to one relationship. They teach the people to avoid a deviant behavior... The religious leaders teach in the church that PLHA are promiscuous and God cursed them due to their sin. The religious leaders said that only cursed people get infected with this disease and people who are promiscuous are infected with this disease On the same issue a rural priest adds, The reason why I said it is the anger of God is because there are rules, which are stated by God from the very beginning, like the 10 commandments. God has ordered any person to be limited to one sexual relationship and it is found written on the New and the Old Testament. And we are ordered to follow that, but there are many people who have sex with many partners. The word of God even permits sex only for the purpose of getting a child and apart from this it is considered as a sin and this is also found written in the holy books of our church. Getting drunk and having sex with many women is totally unacceptable because it is out of the laws of God. The church teaches about this on holydaysI feel happy when I hear radio saying abstain from sex. And people are abstaining and saving themselves from the disease and those people who do not abstain are being punishedI know of a person who became AIDS patient. He was a promiscuous person who used to go

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here and there. People used to gossip about his behavior. Thus I was not surprised to hear that he was HIV positive. The disease killed him after making him look very thin. A rural male also expresses his view, The religious leaders give education about AIDS in the church. The religious leaders advice us to take care of ourselves from this disease and they say that this disease doesn't have medicine because it comes for God.

Implications for Stigma

Both the attitude that HIV is directly linked to promiscuous sexual behavior---non acceptable behavior outside the norms of society and religious values--- and the belief that HIV is a punishment from God justifies judgment and blame of PLHA and their families, leading to shame and disgrace for both. Because it is promiscuous people and sinners who get HIV, stigmatization and discrimination of people living with HIV, behavior that would not usually be acceptable towards others, and in particular towards family members, is not challenged or at worst may be sanctioned or even assumed justified. An urban female explained this with respect to her own children: Those who go out of God's permission will be infected. I always advise my children to be loyal to God and respect his rules. Thus, I won't mind if they refuse to be loyal to God and die. Another rural woman explained how PLHA are treated: They talk openly even when the patient is listening and they curse him/her by saying, This is what you brought because of your own deviant behavior; we should not suffer because of you. Let God do what ever he wants to do with you This underlying belief then fuels stigma and resulting discrimination against those living with HIV and their families.

Implications for HIV Prevention

The attitude that it is those promiscuous people who get HIV, creates and strengthens the perception that it is people who are different who get HIV, therefore allowing a denial of the possibility of own risk. Because I am not like them, my behavior cannot be putting me at risk, indicating a lack of need to adopt preventive behavior. If it is only deviant people who get HIV, then I (who is not deviant) have nothing to worry about and am not at risk for HIV.

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The belief that HIV is a punishment from God also has implications for prevention. It enhances a sense of fatalism about individual ability to protect oneself from HIV, it is the will of God, therefore there is really nothing that can be done to protect oneself. It also leads to the belief that if God gives HIV, He also has the power to take away HIV. If a person living with HIV asks Gods forgiveness, is truly repentant for their sins, and believes enough in Gods healing powers, then God will remove HIV from the person. This view is explained by a rural man, who is a member of an anti-AIDS club, as follows: There are those who say what God has brought can be ridden by God himself and tell us that we can do nothing to stop it. We teach them under God that we have to be able to protect ourselves, for we should not keep our gate open to allow the hyena eat us. A rural man adds, If AIDS infects a person, God is the one who cures the patient. I have seen people who get healed from AIDS in the church through prayer. The prevention methods are fasting and prayer. And if there is a person who is infected by AIDS, we should to pray and fast for him to get healing from God because HIV and AIDS do not have medicine...If I know that I am infected with AIDS, I will devote the rest of my life to God and pray every time to get forgiveness from God. However, if one does not believe enough in the power of God to heal, then it will not happen. As explained by a religious leader in the rural site: We tell them that God gives them his mercy...Our weapon is the holy water. We do that and you see holy water is a matter of belief. If the patient is a genuine believer, he can be treated. If he is suspicious of the healing power of the holy water, he cannot. When Jesus Christ treated patients he told them that it is your belief and your religion that treated you, and do not believe I treated you because of my power. The ability of Gods power to heal (including to cure HIV) is expressed through faith healing, most commonly discussed in the study communities with respect to the Orthodox Christian faith and the religious rite of taking holy waters. An urban female participant expresses her view as follows: I will advise him [AIDS patient] to be baptized with a holy water, since there is no solution for this disease other than the holy water. Or I will take him myself if it possible for me...Even though I do not tell to the patient directly that I know he has HIV, I will tell him that holy water can heal HIV and AIDS. Another ads, People say many PLHA are cured by taking holy water at Entoto Mariam. There is a lady who gave her witness that she got cured at Entoto Mariam.

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The role of religion in Ethiopian communities is very strong. Religious fathers have duties and responsibilities to help the desperate and the sick. People living with HIV and AIDS seek help from religious fathers and get encouraged by the advice they receive. A PLHA participant reported that she asked the religious fathers to pray for her during Sunday services believing that she would be cured. After the church services she reported that she felt that she was regaining her strength. Parents with deeper religious beliefs console their PLHA family members mentioning God as the ultimate power to cure patients, and the holy water is believed to be Gods way of treating patients.

Judgment and Blame

As discussed above, the belief that HIV comes from promiscuity and from God as a punishment for this sin, leads to judgment and blame of PLHA, or those suspected of having HIV or AIDS. As testing for HIV is not widely available, and public disclosure of status is uncommon, most stigma and discrimination is based on assumed HIV status. Assumptions are made based on physical signs and symptoms associated with AIDS, and on membership of groups that are singled out as having particularly deviant behavior: sex workers, young men and women, and anyone known to travel on a regular basis or for extended periods (e.g. truck drivers, businessmen, soldiers). Knowledge of the sexual transmission of HIV coupled with the information that these groups are high risk as evidenced by the visible public health campaigns targeted at these groups, and the visible signs of more illness and death in these groups, strengthen the justification for singling out these groups as deviant and to blame for bringing HIV into the community. The poor and rich are also discussed as being at risk, and therefore to blame for HIV, but for differing reasons. The level of judgment and blame, the resultant stigma and discrimination, the experience of that stigma and ability to cope with it, varies across these groups and is moderated by existing social norms of appropriate behavior for men and women and their relative access to resources and power. Poor and Rich1 Both the poor and rich are seen as being at risk for HIV and hence to blame for it. Within these two groups it is perceived that it is poor women and rich men who get HIV and who are therefore blamed. Poor women get HIV because they need to sell sex to earn money, while rich men get HIV because they have money to buy sex, have the free time to engage in sex, and because of their wealth are careless with life and not mindful of the future. As one man said, a poor person would do anything to survive and, therefore, is exposed to HIV risk. While there is expressed sympathy for the poor women as they are seen as being forced into sex work because of poverty, it is clear that they are still blamed and stigmatized, both for engaging in immoral behavior and having HIV. While there is little sympathy towards rich men, there was agreement that, because of their relative power and access to resources, they would experience less stigma and discrimination. This is because the rich can pay for nourishing food and have access to quality health care as well as drugs. They will therefore stay healthy longer without visible signs and symptoms, and are able to hide their status longer, effectively circumventing stigma and discrimination. Even when the rich become ill, they are still able to hide the fact of HIV because they can afford to pay for
1

It is important to note that this work was carried out in poor communities and therefore reflect the opinions of the poor, not the wealthy.

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private, discrete care. While the rich can hide HIV longer, and so ward off stigma and discrimination, the poor become visibly ill more quickly and because of their poverty must put themselves (and their HIV status) into public view in order to seek help. As an urban female respondent explained, The rich will not be known because being treated by his own money can hide him. The poor tells his problem to people who live nearby him, for his neighbors, for the community and for the government, in order to be supported. Otherwise the disease stresses him. A home based care worker described how the rich even turn away help when it is offered: Rich people are not willing to disclose their status. We can see a poor getting sick, coughing and so on. The rich are not willing to open their door for us. People Who Travel In both sites, respondents identified people who travel as being at risk for HIV and somewhat responsible for spreading HIV. As one rural male explained about truck drivers, Drivers are spreading the virus Drivers even in the old days, say in the time of Haile Selassie, liked to carry women like a wallet wherever they went. Drivers do not like to pass a night without a woman where ever they go. They eat and drink and their sexual desire is very high. Bar ladies live on such income. They do not ask if someone is free or not from HIV. However, the language used to describe this group and why they are exposed to HIV was less harsh than for youth and sex workers, and in some cases almost sympathetic. This sympathy was linked to the nature of these mens work - truck drivers, businessmen, soldiers and even government workers - which takes them away from home for extended periods of time, putting them into situations where there is easy access to commercial sex workers and a tendency to drink, which may heighten sexual desires and lead to risky behaviors like unprotected sex. A rural male participant explains, It is mobile people who go here and there for work that are mainly exposed. Because they are living separated from their families. They may drink alcohol and be motivated to do sex and at that time they may not use condom. Another rural male adds, For instance, a merchant has a chance to travel from one country to another. At this time he sleeps in a hotel. In the hotel he might sleep with a woman [sex worker] and due to this he gets infected. Secondly, the government workers are going to the

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field every time. Due to this they might have a chance to sleep with bar ladies and have sex without condom. Youth Young people are widely blamed by both adults and the youth for spreading HIV through their irresponsible and careless behavior. According to rural female FGD participant, The youth are more exposed to HIV and AIDS because most of the time they are having sexual contact with different people. However, while youth are commonly blamed for spreading HIV because of their careless behavior, the respondents explained that there are many reasons why young people behave in a way that puts them at high risk for HIV infection. To begin with youth are in the fire age where they cannot control their sexual desires. They are also easily influenced and corrupted by the attraction of the city, foreigners, older men (attracting younger women with gifts), and western movies, all of which lead youth into inappropriate and risky sexual behavior. A member of an all-male FDG explains, In my own view, people whose age are 15 -38 are exposed to HIV and AIDS because nowadays there are different bad movies imported to our country that are out of our culture and which ruin people's manners. Therefore, those youth have deviant behavior and have sex with different people and they cannot control their sexual desire at all. And nowadays women wear the type of clothes that encourage youth to have sex. Alcohol and other drugs are also seen as playing a major role in leading young people astray and into promiscuous sex which exposes them to HIV. Alcohol and other drug use, in particular the use of kat, were seen as creating favorable conditions for the spread of HIV. A rural female explains, The youth take alcoholic drinks in the town, spend the night with sex workers and come back here and contaminate others with the virus. Promiscuous, drunkard persons and the youth, because of fire age, are exposed to the disease. In the rural area there was discussion about the use of drugs, in particular kat and hashish, by youth as a means to diffuse their anger over the lack of employment opportunities upon leaving school. As a rural male informant explained: The youth here use kat, the Jamaicans here promote drug use and when youngsters take hashish they do not know what they do; there is poverty and people, both men and women, come looking for a job. They end up getting used to hashish. Smoking hashish has become common and is expanding to the rural areas.

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Young people are also viewed as engaging in inappropriate behavior and, hence, contract HIV, because they lack vision in life, are no longer listening to their elders and have stopped following traditional and religious teachings. A rural female participant expresses her views as follows: However, people are not getting closer to their religion and the youth do not listen to the advice of their parents. I am fifty years old now, and during my youth age I used to respect the orders of my parents. But the youth of this generation do not want to listen to their families. They do not help their parents. Thus, parents are cursing their children and this disease is wiping out the youth. Another adds, The community says the reasons for being infected with HIV are delinquent husbands and wives. They say if they had been disciplined, if they had not been promiscuous, they would not have been infected. They blame them for bad behavior. They say they are promiscuous and do not listen to the advice given to them by their parents or have parents who do not control them as to where they spend the days and the evenings. One particular tradition that is seen as lapsing is marriage at the appropriate time. As explained by an urban housewife: It is the youth that is blamed. The reason is the youths are not getting married early For example, at present if my son gets married I would be happy because he will not waste his time on unnecessary things and would be reserved from having many sexual partners. She goes on to note that she has sympathy for youth and their emerging sexual feelings and that the answer is early marriage since the youth are waiting for marriage till they grow white hair, I guess they are exposed to the virus. There is also some sympathy for youth and recognition of the role that poverty and lack of economic opportunities play in leading youth to certain unacceptable behaviors. As explained by a rural female informer: Young people finish their education and do not work. They are unemployed. There is no recreational place or library that can occupy their mind, read books and spend time. Due to this, chewing kat, smoking cigarette and drinking and drugs are their only means of recreation. These behaviors expose them to the disease. Gender Many informants held the view that HIV affects everyone. Both men and women are at risk of HIV, but for differing reasons. Women are exposed to the infection because of poverty and unemployment which force them into sex work, and because of cultural norms and practices which

36

make them vulnerable to unwanted sexual advances and unable to negotiate safe sex. On the other hand, the view is that men simply bring HIV upon themselves. According to an urban male participant, It is known that a man brings the disease upon himself. But a woman gets infected when she engages in the work of prostitution since she does not get another opportunity that enables her to support herself and her family. Women have less opportunity than men thus they will be pushed to work a risky job. But men are not that much exposed to the disease in terms of the work they do. Another adds, Women have a high probability for getting the infection because they are living in a low economic standard. Due to this they are forced to work in the bars as bar ladies to get money. Drunkards rape them. They have sex with different men. Thus, they are exposed to HIV and AIDS. Other than this, some women are employed as housemaid. The employers mistreat them.I believe females who live in low economic standard are exposed to HIV and AIDS. Men bring HIV upon themselves because of their natural propensity to sex and uncontrollable sexual desires. As a female participant in an urban focus group discussion explained: I think men are the most exposed ones because women can control their sexual feeling and they even can wait if they decide not to marry earlier. But men cannot control their sexual feeling. Mens lifestyle also exposes them to HIV because of their greater freedom of movement and access to money and time which allows them to go to social gathering places, like bars, where sex workers are found. So explains an urban female participant: In my opinion men might get HIV because women do not have the chance of going out of the home. Our living condition makes us busy. But men could go to some other places and due to this they could get HIV. Men are the ones who are blamed for having HIV. Women do not have the chance to go out of their homes and get exposed to HIV. On the same subject, an urban male says, Men go to many places. And they have more chance to go out of home than omen. More men have jobs than women and this enables them to have wide social interaction. They participate in meetings or they go to watch games and they go to entertaining places whereas women are suppressed by their husbands due to cultural influences. There are housewives who do not come out of home. But among the employed women almost half of them might be vulnerable to this disease. However, when I compare the ratio between men and women, most of the time the men are the ones who bring the disease home.

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Some respondents noted that certain cultural beliefs encouraged multiple sexual partners for men. As a rural male religious leader explained: in the rural area to be limited to one wife is a sign of weakness so going to town and passing a night with another woman in town is seen positively. Womens vulnerability to HIV was perceived as stemming from their relative lack of economic and social power. According to an urban female informer, In our country, men are the source of income, the head of the family, and the owner of the property whereas women are dependant. When women lose the support of men, they go to other places to find jobs. For example, they work as maids and bar ladies. Due to this they face many problems, when they are searching for jobs, or working and even when they lose these jobs. The lack of access to resources forces women outright into sex work, or makes them provide sexual favors to bosses in order to obtain or maintain a job. Office and household workers were observed as being particularly vulnerable to this type of sexual coercion. As explained in an FGD or urban men: Those housemaids are forced to have sex with the person who hires them with money. Rape was also mentioned as a reason women were more vulnerable to HIV than men. In the community interviews, participants expressed sympathy for women, even towards sex workers, for having to engage in work that exposes them to HIV due to poverty and lack of other employment opportunities. However, despite this expressed understanding, women engaging in sex work are still blamed for being the source of HIV, and feared as a result. An urban male member of an FGD expresses his view, The farmers go into town to sell their grains, but after they sell their product, they drink tej (local alcoholic drink). They get drunk and when it gets dark and becomes too late to go home, they rent a room and a commercial sex worker. They sleep with sex workers without knowing about HIV status. The poor farmer gets infected and goes home and infects his wife. I think the main causes for transmission are the people who are working at the hotels (the commercial sex workers). That women are seen as the source of infection or disease has roots in past beliefs, which persist to some degree today, that sexually transmitted diseases are womens diseases. It follows then that HIV, also sexually transmitted, is brought by women. As explained by an urban man: As it is known both women and men get HIV and AIDS. But due to lack of awareness, it is considered that as if sisters [women] have brought it [HIV]. Still the society's awareness has not developed. Previously STD has been considered as women's disease. Likewise this disease [HIV] is considered as a womans disease. But it is not a womans disease, it is a common disease. Our sisters have not brought the disease and they would not have it without reason. Since the disease is highly strong, it affects every society. They get it due to economic problem.

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So while there is evidence of more sympathy for the reasons why more women than men are exposed to HIV, women are still more likely to be viewed as the source of HIV and as such blamed. It is also clear that women, despite this apparent understanding, are more highly stigmatized than men. If a woman becomes infected, whether she was known to be actively engaged in sex work or not, she is gossiped about as having been promiscuous, even called a prostitute, an extremely negative and harsh label. As a rural woman explained: there would be pressure on women and they would be blamed more for being promiscuous and contracting the virus than men. If a man gets infected, it is more likely to be shrugged of as simply an accident because he was behaving as men do. According to an urban male, If a woman engages in prostitution, people say That person's daughter has become a prostitute. They hate her very much because they fear that she might be a bad example for their daughters. They disgrace her. A man would have a better respect than a woman because he is a man. And if a man gets infected, it will be said, he got infected accidentally. But if the woman gets infected, the gossip about her will be more exaggerated than that of the man. People say she brought the disease by going out with different men. The data collected through the diaries of people living with HIV, show clearly that women face more and harsher stigma and discrimination than men. This included stigma from the community organizations, other women, family, and health institutions. Out of the fourteen participants living with HIV who participated in keeping diaries, the eight women recorded a more deeply painful and bitter experience than the six men. The actual experience of stigma is described in more detail later, but here what female PLHA, aged 39, states: Let me tell you from my experience. In our village I am the only woman who is suspected for having the virus. However, many men are suspected and known for having the virus. But nobody seems concerned and talks about the men. They spread the gossip about me. When they see me wearing neat and nicely they gossip by saying "doesn't she feel ashamed?" but nobody says that she wears what makes her happy and that it is good if she has happy life till she dies. Another female PLHA, 32, adds, I hear people mostly blaming women for having HIV and AIDS and being the cause of the disease but I do not know their reason. Yet anther female PLHA, 32, adds, There are many infected men in our village, but they are not being isolated and people are not concerned about them.

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Shame and Disgrace

The association of HIV with unacceptable and immoral behavior, particularly for women and the young, leads to an acute sense of shame for PLHA and their families and brings disgrace upon the person and the whole family. This fuels stigma, in particular it leads to families wanting the family member with HIV to leave the household, so as not to disgrace them, or in families attempting to hide away the person living with HIV. (The experience of this kind of stigma will be discussed in more detail in the next section.) An urban male states his experience about shame and disgrace as follows: There is a woman that lives in a community. She told me that her son is HIV and AIDS patient and she has hidden him. The neighbors think that he left for the country side. The mother begged me to give him advice in hiding and to be careful not to be seem by other people. I was disappointed by the action of the woman, for hiding him. She wanted to protect her honor. I tried to convince the mother that she was wrong. I talked to the patient and I was really sad to see him in bad condition. Two persons living with HIV and AIDS in Addis explained their experience of this shame and disgrace. A female PLHA, 33, tells: He [father] always tells me that please do not show your face to others and do not have close relationship with our relatives and I think he says this for the sake of his family reputation. This is supported by another female PLHA, 37, who says, My parents including my sisters and brothers want me to leave the house because they feel that I have disgraced the family reputation. [Urban, female, 37]

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CHAPTER FIVE:

THE EXPERIENCE OF STIGMA

The Forms of Stigma and Discrimination

This chapter portrays the experiences of stigma, both from the perspective of people living with HIV or AIDS and from community members. We begin with how stigma manifests, where it occurs, and among whom. We then discuss two particular types of stigma: internal stigma and secondary stigma. Internal stigma is the acceptance and internalization of societys stigmatizing attitudes by people living with HIV and AIDSthe belief that they deserve the treatment they get. Secondary stigma is stigma toward those associated with HIV or people living with HIV and AIDS. We conclude the chapter by detailing how people cope with the stigma they experience and how stigma may change over time. Our data reveals several different forms of stigma: verbal stigma; physical and social exclusion; loss of identity, rights, and status; and loss of access to resources. Data from the quantitative survey indicates that verbal forms of stigma exceed other forms of stigma such as physical abuse or physical and social exclusion from community forums. Verbal stigma is more practiced by the youth (38%) as compared by the elderly (20%). Verbal Stigma Stigma manifests in verbal forms through gossip and rumors; labeling and expressing shame and blame; insulting, cursing, and scolding; and openly discussing punitive measures for people with HIV. The rural and urban communities report similar forms of verbal stigma. The most common verbal form of stigma is gossip and rumors. Gossip and Rumors Community respondents and people with HIV or AIDS reported widespread gossip and rumors in their neighborhood. A rural female suspected by the community of having HIV reflected on her experience in an FGD, In this community people repeatedly gossiped about me saying, it is that, it is cobra, it is AIDS. A male in the urban community said, One day when I came to MEKDIM for work I met a lady while she was walking with her friend. She said by pointing her finger at me, He has the virus. One female in the rural area reported in an FGD, When I was ill, my neighbors came and visited me, but from behind they were rumoring about me. This phenomenon of voyeurism, visiting in order to be able discuss someones status and illness progression, by no means absent in the area of studies, was not the most common form of gossip. In some cases, gossip consists of pointing fingers and identifying someone as HIV positive. In many other cases, neighbors and friends gossip and spread rumors that it was the persons misbehavior that caused HIV and AIDS. One rural female in an FGD reported that some body followed her and said, You, AIDS victim!. and another reported people, upon seen her, say AIDS is coming and move aside. 41

A female informant in the urban site said, I fear peoples gossip. I fear gossip because when a person has HIV and AIDS, people say that that person has AIDS and he got infected because he is promiscuous and so on. Due to this I fear peoples gossip. Fear of gossip was a frequent theme mentioned by community members who did not know their HIV status and people living with HIV or AIDS alike. It was widely believed that this fear influenced decisions around disclosure, as discussed later. People living with HIV or AIDS who experienced verbal stigma noted that the impact on their outlook and daily life was immense. Respondents reported emotions such as sadness, anger, rejection, and loneliness and often responded by withdrawing themselves from situations where this type of stigma might be experienced. As one urban female described, It was in the Kebele. When they saw me I heard them saying, Keep quiet she is coming, she is full of infection. I became angry and sad. Then decided to stay at home. Some of the rumors take place to label or identify someone as having HIVoftentimes in an effort to protect those who are not infected. Other times, rumors focus on the means of transmission, on a persons behavior. In this case, gossip and rumor serve to reinforce the social norms about appropriate behavior and inappropriate sex. While each of the causes of stigma mentioned earlier are intermingled in each form of stigma, it is possible that the first instance of gossip, labeling, may be more closely caused by poor knowledge (particularly about transmission through casual contact) while gossip about behavior is more closely related to judgmental attitudes, shame, and blame. If this is the case, then improving knowledge about all aspects of HIV may pay significant dividends in overcoming the labeling form of gossip while the second form of gossip may require a reflective examination of social values to need to be overcome. Insulting, Taunting, and Scolding Insulting, taunting, and scolding, like some gossip and rumors, is focused on the misbehavior that caused HIV. In contrast, it is directed toward the person with HIV or AIDS rather than something said to another person. Neighbors, strangers, and family members all insult and scold people with HIV and AIDS, a form of stigma that reportedly follows people with HIV and AIDS wherever they go. Insulting and scolding serves to draw attention to and accuse a person of his or her misdeeds or to blame him or her for getting HIV. For example, a female informant says, They curse him/her by saying, This is what you brought because of your own deviant behavior; we should not suffer because of you. Let God do whatever he wants to do with you. Another woman reported that the mother of an HIV-positive friend scolded her daughter by saying, You bring disease to this family. You got infected with this disease because of promiscuity. In another situation, insults are used to remind a woman that she is now seen as a useless person since she has HIV. An urban female participant explains, 42

This morning I went to an orphanage to see how my children who are living there are managedI came across a cruel woman that was employed to look after the childrenShe refused to allow me to see my children and told me that HIV positive people are hopeless and cannot touch healthy people. I was sad, felt very bad. . Sometimes taunting is used to remind people of their shortened life expectancy. For example, an urban male described a quarrel he had with the driver over a taxi fare, The driver knows me [that I have HIV] and he said, You will die soon. Why do you quarrel over few cents? In other cases, insults serve to accuse a person for threatening the community or family members with the infection. An urban male says, people were insulting her [a woman with HIV] by saying that she brought this ugly thing to the community. Meanwhile, a woman reported, The child of my neighbor came to my home while I was eating. And I gave him a bite with my hands. Suddenly his mother came and shouted at me saying, You want to feed my child your disease! She also experienced the same fear of infection from her relatives, I went to my aunt and asked her if I could make her chicken soup. She said, Dont try to spread the disease. Yet another way of taunting and insulting is used to remind people with HIV and AIDS that community members are not tolerant of them. They put into words other forms of stigmatizing and discriminatory actions, such as quarantine. For example, a female participant reported, A group of people were chatting and when they saw me they said all the people with HIV and AIDS should be put in a quarantine. I was really angry. Another female participant said community members scold her by saying, Why does the government not take you away from this community and put you in some place? An Emerging Vocabulary HIV and AIDS is creating its own discourse (mostly in Amharic) as it is gaining centrality in the life of the people. Most of the words were found in the urban sites, with somewhat fewer from the rural sites of our study. HIV and AIDS is depicted as mercilessness, cruel and tricky as the names indicate. Words describing the actual person living with HIV and AIDS are more rare. Some words describe the physical effect of HIV and AIDS on a person, its power to kill, and spread fast: Amenmene: a disease that gradually eats your body and eventually causes death (used by elders) Yeminkesakes Atent: walking skeleton (used by all age groups) Zendo: python; very powerful and breaks your body (used by taxi and truck drivers) Kachamali: an Italian made bus that travels fast; the disease that spreads fast Yehmanehe: a disfigured person (used by rural people) Mot bekeda: to be betrayed by death; refers to the suffering PLHA undergo before death (used by young people) Gendis: to fall a tree; kills mercilessly

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Some words express the mercilessness and cruelty of HIV and AIDS. Bilaw: a knife usually with two sharpened edges; that which hurts you if you touch it (used by young people) Cobra: a deadly, poisonous snake; a new, powerful Toyota car that travels fast and reaches anywhere irrespective of the condition of the road (used by youth to show how dangerous HIV and AIDS is) Awrew: the beast (used by the youth) Aymere: the merciless; the end of life (used by rural residents) Fenji regete: he landed on a land mine Kendam: with sharp horns; refers to HIV and AIDS being dangerous Some words show HIV and AIDS is an evil spirit. Erkus menfes: evil spirit; dying as if possessed with evil spirit (used by rural people) Menfes: ghost; refers to someone with HIV or AIDS Some words express that a stupid or ill-mannered person gets infected with HIV. Faraw: uncivilized (used by youth) Balegew: ill-mannered and uncultured; refers to those with deviant behavior; refers to an irresponsible family that does not follow the social norms in bringing up their children Dedeb; cannot understand anything; implies HIV and AIDS does not respond to anything and it simply kills you (used by youth) Yeaheya besheta: disease of a donkey; the person who contracts the disease must be as stupid as a donkey Some words express HIV and AIDS is fast and clever. Aradaw: a place where city boys are found; clever and deceptive (used by youth) Fetagne; speedy; the disease kills you fast; refers to full blown AIDS (used by urban youth) Ajerew: someone who is clever and acts with no inhibition Achule: small and smart; refers to a small virus killing big people Some words describe HIV AND AIDS to be a chance factor. DV: acronym for US Diversity Visa given on lottery basis Joker: a versatile playing card selected from the deck by chance Video deck: TB accompanied by HIV and AIDS (used by young, urban boys). This naming came as a result of diagnosing TB. When a patient is said to have TB, the question follows, Is it TV only or with its video deck? An informant says, If the disease is video deck, they say that he would die soon so be ready to bury him. Some words are used to describe HIV and AIDS as a recent disease, implying that the disease came because the present generation is sinful. Adisu beshta: the new disease (used by elders) Yegezew beshta: the disease of the current time; the disease, which is killing many people

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Naming of famous football clubs such as Barcelona, Bayer Munich, Manchester United is used to say that a person has HIV and AIDS. If a person is PLHA and joins one of the PLHA associations, they say he is a member of such a football club. Some less direct words are used to describe HIV and AIDS. Menamente: a thing referred to with scorn; used to avoid naming HIV or AIDS Positive: used in lieu of a persons name. An informant says, So if we want to visit them [people living with HIV or AIDS], we just say that lets go and visit a positive. Physical Stigma Physical forms of stigma include distancing and avoiding contact with people living with HIV and AIDS; physical isolation of the person and their belongings (e.g. through separate sleeping quarters, utensils, and clothing, occasionally including more forcible exclusion and confinement); and, though it is rare, violence or threat of violence against someone with HIV or AIDS (e.g. beating, throwing stones, arrest). Friends and neighbors distance themselves from a person who is suspected or confirmed to have HIV or AIDS. A participant in FGD of adult females said, No one says, let me help the patient so that he will feel happy.Therefore, they avoid and isolate the AIDS patient. A male member of an HIV and AIDS club described peoples behavior that he had seen, as follows: They try to avoid the person by not shaking hands, turning face and showing their back and even do not exchange verbal greetings and would not sit with him in places where they go for relaxingThey will not share knives, cooking utensils, and other tools like sickle, axe. A female in an FGD agreed, saying, I will not enter to her house; just stay outside. I will say good morning and good afternoon, that is all. The male respondents explained that people will behave in this manner even toward a friend that they have been close to, should they come to learn he or she has HIV. One man with HIV confirmed this with a story of his own, In the morning I went to church. On my way I met a person that I know and wanted to greet him. He said, Aidsam how can you think of greeting and shaking hands with me? I was really sad and irritated by the words of a person that used to be my friend. One reason respondents provided for avoiding people living with HIV and AIDS is because they think they can infect them with the virus. A female informant says, They point fingers at them and say, Do not get close to that person, he has the disease otherwise you will be infected. A male FGD respondent adds,

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It might be transmitted through breathing, we do not know. So being careful is necessary: avoiding eating food coming from the patients home, not sharing clothes and not drinking with the glass that the patient used. This is what I think. The diaries of people living with HIV or AIDS were replete with first hand experiences of this type of physical stigma. A young woman described, In the morning I came across a person who was very close to my husbandHe tried to avoid me by standing away from me and pretending as if he did not see me. Another said, Then as the coffee ceremony started I started giving lessons on HIV AND AIDS. The women realized that I was living with the virus. Those that were sitting close to me started to change their seats. While yet another woman said, She is a neighbor and whenever she finds me on the way she used to kiss me. This time she kissed all others with me, but this time she avoided me and suddenly she said, because I have flu I will not kiss you. Many of the diary entries described the negative repercussions this stigma hand on them. One female respondent summed up by saying, I am living being feared as a beast, which is not goodthe community members tell their children, Do not enter her house and that annoys me highlyThus I prefer to isolate myself and to live carefully in places where no one knows about my status. In addition to being avoided by friends and community members, people describe how people with HIV and AIDS are separated within the home so that physical contact is minimized. A rural man elaborates, If the family knows that he/she has AIDS, they separate their commodities from him/her and they let him/her sleep in a separate room and let him/her eat alone with his/her own plate. No one will come close to him/her, they will isolate him/her from the society...The family tells him/her to use his/her own things for himself/herself without mixing with their materials. A man with HIV described his brothers reaction, He is my elder brother. He and I used to live together. He left the house when he heard that I am living with HIV. In the quantitative survey, a substantial portion of respondents (about 30%) believed that people with HIV and AIDS should be separated from society. However, the qualitative data revealed fewer people with such harsh opinions. One rural woman described her attitude, which combined desire for physical distance, fear of casual transmission, a limited level of caring, and support for punitive measures, as follows: If I know that he has got it, I will never have coffee with him. I will tell his relatives that this thing is harmful and that they should hold him back from coming to my home...I wont go to his home. But I will give him money if I have some. But I wont eat with him and I dont want him to come to my

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home.... I will stay far from him. If he asked me I will give him some money or I will buy him food and I will stay away immediately after dropping it for him. I wont drink even a soda if he buys it for me.... The government should keep him separately till he dies to protect others from being infected. If the person has a piece of land or money, the government can share half of it for the expenses of the patient and the rest for his family. It was rare that incidences of violence were witnessed or experienced. However, one woman with HIV described the abuse that took place in her home, I have two sisters. They continuously physically abused me. One day my elder sister put an axe on me and some other time they also threatened me with a gunMy family is not interested to see me being alive. Moreover, one day when I came home at 8:00 p.m, joining with their friends they abused me and threw me on sewerage dump. They sent youngsters to hurt me. Although such extreme forms of physical stigmaforced separation and violenceare rare, participants in FGDs and interviews expressed strong fears that if they are found to be living with HIV and if people know they may be physically threatened or forcibly put in total physical isolation. In a FGD of rural women, a participant described, Do you know the reason why I am scared to take a blood test because there is a feeling that comes to my mind every time, i.e., if the people know that I have AIDS, they might kill me. If you ask these girls to take a blood test, they will take it as the worst idea in the world. The fear of stigma alone is enough to affect the actions people take. Social Exclusion and Loss of Identity Accompanying physical exclusion comes social exclusion and a loss of ones identity in the community. People living with HIV and AIDS are prevented from participating in family and community life and experience a reduction of daily social interaction. A rural female respondent explains, They would gossip and change their social relation by distancing from the patient...They show different attitude, discontinue their relationship, tell their children not to mix with the children of the HIV and AIDS victim family; the social life of the family will be in chaos. One young man described his own experience being socially excluded, I wanted to play football and I went in the nearby field. The groups formed teams by selecting each other. I was left alone. Made me feel that that I was a patient. I hated myself. One important expression of social exclusion is exclusion from community organizations, like the idir. In an FGD, a young man said if a PLHA discloses his HIV status, They avoid him. For example there is idir in our community. Idir is very important form of social organization. People isolate and dismiss a person living with HIV and AIDS from it. A young woman reported this happening to her.

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I heard that there is a youth idir in our community and I applied for membership. When I asked the idir leader, he told me to ask the secretary. When I asked the secretary of the idir, she told me to ask the leader. When I asked them together, they told me that they are going to give me the answer after they ask all members of the idir. A week later, they told me that the members are not willing. Another expression of social exclusion is exclusion from community events and ceremonies. As one woman reported, family members resist a person living with HIV and AIDS from participating in social events and say, Doesnt she feel ashamed to go to the invitation? Another female participant explained what happened to her as follows: Last time a ceremony was conducted in the neighboring home and I went to help the women who were peeling and chopping onion and doing other things. However, they did not want me to participate and one of them told me that I should get rest and the onion would burn my eyes. As people are excluded from community life, not only is their level of interpersonal interaction with their neighbors decreased, but they also begin to lose their identities and roles that they played within the community. In one case, a woman was denied the opportunity to be elected as kebele representative because people were concerned she would not live long. As people with HIV and AIDS are excluded from social activitiesbeing a kebele representative or chopping onions for a ceremonycommunity members come to think that people living with HIV and AIDS are useless. They do not think that they can live normal life like any other and accomplish their ambitions or contribute to community affairs. When excluded, people living with HIV and AIDS are made to feel uselessness and hopelessness. Loss of Access to Resources In Ethiopia, for people living with HIV and AIDS, the three most common forms of losing access to resources are losing their housing, their livelihood; and their credit. Of these, losing housing was the most widely reported both by community members and people living with HIV or AIDS. As an HIV positive man stated, Those PLHA who do not have their own house face a difficult situation in the community. One female PLHA described her troubles finding someone willing to rent housing to her: I was searching for a house to rent far from the village I used to live in. But it was difficult to find one because the rumor that I live with HIV has spread widely. When the house owners heard the rumor, they cancel the deal and told me that they do not want me to rent their roomI went through many ups and downs to get the present house I am living in and the owners still do not know that I live with HIV. In some cases, people report being kicked out of their house when the owner learns they have HIV. Fear of transmission from casual contact is often cited as a reason: An urban woman informant who reported that a man was kicked out of the house he rented when his wife died due to HIV and

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AIDS said the owner told her that she does not want her family to be infected with HIV since fleas can transmit the disease. In other cases, positive people are instructed not to use shared toilets before ultimately being evicted. One woman, who wasnt evicted, described her experience, In the morning I went to the kebele asking them to do maintenance of the house I was living in. And they told me to live there till I die and there is no need to maintain the house for a person like me. They know that I live with the virus. Loss of access to a source of livelihood can occur through a direct firing or because community members are unwilling to patronize the business of someone who has HIV or AIDS. There were numerous accounts of people being dismissed from their jobs in a wide range of fields of employment. A man reported, I was working as a department head in private transport corporation. Many drivers got HIV in that organizationAnd when they got sick they were fired. A woman asserted, If people know that their housemaid is HIV positive they immediately fire her. This is the reason why people living with HIV and AIDS hide their health status. Another described, He was working at the Hilton Hotel and there was HIV blood test check up for all workers and then he become HIV positive. At this time he was immediately fired. A third woman who was an experienced weaver reported that she was not notified of her firing, rather she simply found that another worker had been hired in her place when she arrived at work one day. In contrast to outright firings, those who are self-employed face different challenges. A male member of HIV and AIDS club in the rural site says, Even here in Sheshamane, where the family of a person living with HIV and AIDS depends on selling milk to the community, people have decided not to buy milk from them...They are suspected. No body is taking their milk; even those who contracted them earlier stopped taking milk from them. Similarly, the quantitative survey revealed that 61% of respondents would not buy food from a vendor with HIV or AIDS. Just as retaining clients may be a difficulty, so too is obtaining credit through formal and informal credit mechanisms. A female respondent says when iquib (credit organization) members knew that one of the members was living with HIV and AIDS, they refused to give him money saying that they were not sure that he would live long enough to pay back the money. A female living with HIV had a similar experience, The [micro-finance] group that I joined collapsed within three days. When I asked why the group collapsed, they told me some group members were not willing to take loan with a person living with HIV and AIDS because an AIDS patient dies soon and it makes them responsible to pay the loansome women invited me to join another group, but some member of this group started talking deliberately that the other group collapsed because a person with HIV became a member.

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Therefore, I decided not to take loan because I do not want this group to collapse because of me. Implication for Disclosure The occurrence of these multiple forms of stigma has made people very reluctant to disclose an HIV positive status. There is widespread support for the notion that people should disclose to family, friends, and community members in general, as indicated by 82% of survey respondents. Yet, survey respondents were equally aware that disclosure was difficult and rare for someone living with HIV or AIDS. A rural female participant explained in a focus group discussion, If I were infected with HIV, I would not disclose. Why should I? If I say I am infected, people will not be close to me, will not visit me, and they will not treat me well. So I will hide it. People living with HIV and AIDS often expressed anxiety when they encountered someone who knew their HIV status in the presence of family or friends who did not. A male respondent recounted, I went there [my home village] to visit my relatives. I came across a person who knows about my HIV status. I was worried that he may spread the news that I am a person living with HIV and AIDS and my relatives may hear that. I was scared and immediately returned to Addis although it was my plan to stay with them for a week. A woman living with HIV summed up the consequences of stigma on disclosure in this way, We are really living under fear of discrimination in case people know about us. It has silenced us and we are not talking about it. Because of this we cannot take care of ourselves and others. Meanwhile, a man noted, There is nothing that makes one happy other than getting acceptance by the community. People living with HIV and AIDS have a problem of fearing where to live after they disclose their HIV status to the community. In an environment of pervasive stigma, disclosure threatens social acceptance.

Where Stigma Occurs

Health Care Settings The quantitative survey revealed widespread supportabout 95% of both rural and urban respondentsfor health services to provide compassionate care to people living with HIV and AIDS. Paradoxically, community respondents and people with HIV and AIDS both observed health care providers to be one of the major sources of stigma and discrimination. The qualitative data reveal that community members acknowledge that the medical system is insufficiently developed and cannot provide good quality of care to all who need it, especially those living with HIV and AIDS and a majority (67%) of quantitative survey respondents acknowledged it is difficult for people with HIV to get medical care." The community has serious complaints against health providers. They do not give attention to patients dressed in poor clothes let alone to people 50

with HIV and AIDS. A rural male participant said, Those people with money can go to private hospitals such as those clinics in Awassa.." Another added: The health providers do not treat a person suspected with HIV and AIDS. They ask his relatives to take him home and take rest there. They tell them that there is no point of bringing such a patient to hospital. The most vivid examples of stigma and discrimination in health care settings came from PLHA themselves. In diary entries and in-depth interviews, people with HIV and AIDS reported being denied care, as a female PLHA, 33, explains, I had a very terrible tooth pain. Then I went to a dentist at Piaza. Upon looking at my physical condition, he asked me about my health. I told him that I am HIV positive. When he heard this he told me that he cannot help me and asked me to leave his clinic. The fact that I was honest hurt me. When people arent denied care outright, they often report that care is delayed. A young woman reported, I took a female child who is HIV positive for medical treatment [at a public hospital]. They were asking me for urine, stool test and I had to do this for fifteen days without the child receiving treatment and finally they told me not to bring the child to the hospital. They were not willing to give her help. They thought she was in the final stage and does not deserve attention. Another way to delay care is to provide referrals for care at other providers (sometimes repeatedly), as happened to another woman who required a blood test. Care is also delayed when patients who have HIV or AIDS are given low priority compared to other patients. More often than not, low priority was rationalized by the belief (and perhaps experience) that people seeking treatment for conditions related to HIV and AIDS do not have a good prognosis. One female shares her experience, I still was sleeping on a stretcher and I was not given a bed. I asked the doctor to give me a bed. He said there are other patients that are given priority. He said this because he knows that I am HIV and AIDS and have no hope for recovery. Another woman reported, One day a doctor told me that my case is hopeless. He was not willing to give me service because I have HIV. Yet another woman stated her experience, It was in the hospital. I asked for a card to see a doctor. The person in charge told me, there is no use in you being medicated. In some cases when care is provided, health workers take extraordinary and unnecessary precautions in fear of transmission. A young female describes her frustrations as follows: I tried at another public hospital. I told them the history of the child. They asked me to remove her clothes and put her on a stretcher. The doctor wore double gloves.

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She asked me to have her urine and stool tested. I came with the test results. The doctor did not want to touch the paper and was touching it with a pen. People attending health facilities also report the same verbal stigmasuch as rumors reflecting poor knowledge and insultsfrom providers as they experience with other community members. A woman described her experience at a hospital, The doctor told me not to come to the hospital for minor treatment and said You dont get HIV like a lottery, implying that she was to be blamed for getting HIV. An older woman reported a rumor she overheard at the hospital, I heard a nurse saying that the thin patient is an AIDS case. The woman was crying and was lying on stretcher. I asked the nurse why she thinks any thin patient is an HIV and AIDS case. She said AIDS patients are very thin. I told her that being fat or thin does not indicate having AIDS. Some people also complained about the poor quality of counseling at HIV testing facilities, particularly at private facilities. One respondent with living with HIV reported, For example, last time a girl went to receive her result paper from the clinic. Unfortunately the doctor was not present. Meanwhile the nurse gave the girl a sealed envelope. When the girl read the paper, she understood that she is HIV positive and she fainted. Finally, she went back to the clinic but the nurse didnt allow her to see the doctor. One woman attributed this to an emphasis on payment, Because counseling a client takes a long time, instead they prefer using the time to treat many clients and get paid. The results of these frequent reports of stigma in health care settings is the widespread belief that, if you disclose your HIV status to health professionals at the health center, they will not treat you properly. As a result PLHA go for treatment hiding their status. (HIV positive woman) The Household The home is mentioned as a place where PLHA are stigmatized and experience discrimination. This is a primary site where people experience the forms of stigma already mentioned: verbal stigma in terms of scolding and insulting; physical stigma through separation of possessions and isolation; social isolation and loss of identity; and loss of housing resources when family members evict a relative with HIV or AIDS from the home. A rural, male informant explains the physical exclusion, The family tells him to use his own things for himself only without mixing with their materials. And the family let him eat only out of own plate and drink with his own cup and separate his bed and let him sleep alone and keep his clothes in a separate place. Thus, a family treats a patient in this way. In addition, people with HIV and AIDS experience stigma in the context of the care giving that takes place in the household. Families reflect community thinking that their relatives with HIV and AIDS have no hope and future. While many families provide care and support when needed (2/3

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of survey respondents say they would do so), providing that care becomes tiresome when families do not perceive visible benefits or an end to the need for care. An urban female in an FGD says, When parents found the illness of someone whom they are nursing is getting no change, they will lose their patienceAnd sometimes families say, Because he is alive, it is a burden to look after. Most respondents reported that this was an attitude that increased over time, as care giving took more resources. One woman, however, reported how a friend of hers who had HIV was denied care early on in her illness, She was seriously ill. She asked her brother to take her to hospital. He refused by telling her that she was hopeless. He told her not to bother people and he does not want to waste money on her. A male said succinctly, The family doesnt want to spend money on a PLHA member since it does not see any hope. Poverty is cited as one of the reasons that families act harshly toward a family member that has HIV or AIDS. Poverty combines with the opinion that PLHA are useless and not contributing members of the household as a family makes difficult choices about where to allocate scarce financial resources, with devastating results for someones options for care. A male in one of the urban site who had HIV himself explained, Actually, treating an AIDS patient is a burden. The medical facilities and the medicines are very expensive therefore families fear not to lose their wealth if they are willing to treat a person who has HIV and AIDS. Thus, most families refuse to take their child who has HIV to medical institution and, instead, let them die at home not to lose their money. Religious Communities People who live with HIV and AIDS reported on stigmatizing experiences they faced from church leaders and followers at places of worship Sometimes, the place of worship is simply a venue for forms of stigma commonly occurring in the community. Such is the case with numerous reports of separate utensils for drinking holy water, as in this womans example, I went to church to drink holy water. Then a woman snatched the water from me and drank using a different tin [cup] and said, I dont like to use the same tin for drinking holy water, because she knows that I live with the virus. More often, stigmatizing experiences are related to religious beliefs that people with HIV and AIDS are immoral and that AIDS is retribution from God for ones sins, such as is reflected by a female, 28, in this incident with a priest, My friend told me that she has HIV and she was critically sick and I told her it is good for her to be baptized by the holy waterI asked the priest to baptize her and told him that she has HIV and she want to confess her sin and get forgiveness from God. The priest refused to baptize her. Another female PLHA, 32, reported a similar incident with a fellow church member,

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It was in a holy place and I went there to drink holy water. As it was my turn to drink, the lady next to me snatched the tin from my hand and threw it away saying I dont qualify to take the holy water. I was shocked. I cried. Media The media becomes a venue for stigma in that it perpetuates stereotypes of HIV and people living with HIV and AIDS that strengthen the main causes of stigma. For example, messages in the media repeat misperceptions about the longevity and appearance of someone who has HIV or AIDS, as a female PLHA, 32, explains, Such kind of advertisements and dramas [that show only thin people with AIDS] encourage people to fear HIV and AIDS and PLHA very much. Moreover, they make people think that a healthy-looking person doesnt have HIV and they isolate thin people. Other messages reflect judgmental attitudes about misbehavior causing HIV, as a male described, I used to feel guilty because the media was presenting HIV and AIDS like a horrible and scary thing that affects only promiscuous people. I was tense at the beginning because I thought people see me as a promiscuous. The media has also adopted a vocabulary that reiterates the belief people with HIV and AIDS are helpless and incapable of contributing to their communities like healthy people can. One female with HIV noted, The programmer introduces us to the people by saying a person who is infected with AIDS, a patient of AIDS, a victim of AIDS, hurt by AIDS, a person who is suffering from AIDS. Thus the people, who watch this program at night see me in the morning as a victim of AIDS and a person who is suffering from AIDS. Due to this, people do isolate the PLHA. Thus the media has a big influence on the society not to properly treat the PLHA. Additional to this, the media is broadcasting programs only exaggerating the problem of PLHADue to this, the community thinks that PLHA cannot work and they always need the hand of others and they are always a problem. Thus all these things have a bad impact on PLHA social lives. In addition to fueling stereotypes and stigma, a man described what happened when residents of a rural community encountered a person with HIV who did not resemble the medias stereotypes. They told me that they used to perceive PLHA like a beast who has a skeleton-like appearance, not like a human being. So they expected me to look like they imagined. When one person who teaches [about HIV] in that area talked with me personally, he said Are you really HIV positive? A person who has HIV is not like you. He is what you dont dare to see. He loses his hair and does not walk standing like you. Instead he has an appearance which looks like a skeleton and he moves like a worm.

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Other people with HIV or AIDS who also taught about HIV reported similar encounters where people didnt believe they were HIV positive because they looked healthy.

Internal Stigma
People living with HIV and AIDS often exhibit internal stigma (also referred to as self stigma) when they internalize the devaluation from people around them or begin to accept the inferior status attributed to them and feel they deserve stigma. In addition to experiencing a loss of hope and despondency due to having a feared disease and uncertain prognosis, people living with HIV and AIDS in exhibit several broad forms of internal stigma: they internalize shame, guilt, and blame for being HIV-positive; feel inferior and/or isolate themselves; and give up on life aspirations altogether. Those living with HIV think that it is shame to be infected with the virus because of its association with promiscuity. Like other community members, they think that to be infected with this disease is a sign of being immoral and having bad behavior, sometimes feeling guilty or responsible for their behavior. As one woman described, I feel guilty because I used to work as a commercial sex worker on the street. Therefore, I feel that if I had not worked as a housemaid or practice sex with different people, I would not have been exposed to HIV AND AIDS. One male explained how his shame led to his withdrawal from community life, While I was married I used to belong to an idir, but when my wife died it was the association that provided me financial support for the funeral ceremony. After that, since I was ashamed to see the community, I left the place where I was living. So I stopped my membership. Expressions of internal stigma sometimes often included such attempts to isolate themselves from close friends and social situations. A female PLHA describes, I do not want to have close contact with people because I know that I have HIVI am the one who should isolate myself from others. Some people who know me well want to have good relationship with me but I do not want to be close them. Another said succinctly, I dont want to be seen by people who I knew before. Feelings of inferiority and worthlessness are also common and sometimes explained why people chose to isolate themselves. This is explained by a male PLHA as follows: I feel inferior. I hide myself when I see people who have not seen me for a long time on the streets. I cover my face with scarf because I fear that they might say she lost her beauty and she looks miserable. I do not feel I am equal with others and I have isolated myself from the social lifeI even stopped laughing and playing with people as I used to do before. A woman elaborated on her sense of worthlessness, I feel emptiness and inferior to all people. And I am assuming that I am different from people and put myself in an inferior positionI think it is because I couldnt get what I want in my life and this is due to losing self-confidence.

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The diary entries and interviews with people living with HIV and AIDS have many examples of people who abandoned their life aspirations, plans, and dreams because of their HIV infection. Such plans and hopes included things like hesitating to pursue new jobs or promotions, continued education or training, scholarships or travel, or aspirations for marriage and family. Giving up on plans for education were most common. Most respondents expressed a sense of loss and hopelessness as described by a female PLHA: Previously I was so eager to be educated and to help my family. But when I was told about my status I lost my eagerness to learnit was impossible for me to continue my education and I was unable to stay with my husband. So I was neither of the two. A male PLHA added, I was hoping to continue my education after improving my ESLCE result [Ethiopian School Leaving Certificate Examination]. I had also wanted to take different course to improve my life[or] go to a neighboring country to work any kind of work. But after I heard that I am HIV positive, I became hopeless. I thought that I could not work and believed working does not have any valueIt was a dead case for me.

Secondary stigma
Secondary stigma is the stigma people who are close to a person living with HIV and AIDS experience. The forms of such stigma are often the same as those experienced by people living with HIV and AIDS, namely gossip, isolation, and loss of status. Family members of someone with HIV or AIDS are the most common subjects of secondary stigma (including children orphaned by AIDS), but it also affects anyone who associates with people living with HIV and AIDS, including friends and neighbors, caregivers, anti-AIDS club members, home-based care workers, and staff and volunteers of AIDS support organizations. A rural respondent noted, They would spread a rumor by saying that we saw that person shaking hands with a PLHA. A female respondent, also in the rural site, described her first hand experience, I saw people pointing finger at me when they saw me with an HIV positive girl. The community knows that she is HIV because she teaches people openly about HIV and AIDS. One day I met her in a tea-room and I kissed her although she had a wound on her face. I kissed her because I did not have a wound on my face. However, the women who were at the bar were whispering with each other by closing their mouth with their hands and looking at me with surprise. Meanwhile, a young woman in the rural site said, If my father is HIV positive, people might hate me, too. And another respondent discussed orphans in particular, They usually point finger at them for losing their parents due to HIV...If the parents died due to HIV people say that the children will die tomorrow.

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A male respondent added, You see some neighbors come together and discuss their daily life; but the family with HIV and AIDS case will not be allowed to do this. Because its son died due to AIDS, they will think every member is infected with HIV. The belief that people close to people with HIV and AIDS also have HIV was a common one reported by numerous respondents. One rural woman explains, This person was with her most of the time assisting her. Then, she died [of AIDS]. People started saying that he must be also with the disease. Otherwise, he would not have been that close to her. Another rural woman added: It is hereditary, and if this thing has happened in the family, it means each family member will be caught they will be hated because this thing is communicable disease. Not only is HIV infection believed to be inherited in a family line, but it is also believed that everyone in the family participates in the immoral behaviors that cause HIV. As a result, family members are often blamed for someone in the family getting HIV and are made to feel ashamed and disgraced. The presence of HIV in the family is an attack on a familys honor and status. An urban participant in a focus group explained, There is gossip. People blame the family and rumor spreads and families dont like this. One woman succinctly commented, it destroys family reputation. Another described the dilemma this put on them as follows: We better keep it secret since it is obvious that we are infected and that we are going to die anyway, so we should not disclose so as to not destroy our familys reputation. We are infected and we should die silent. Families fear stigma and discrimination from the community as a result of being associated with a relative who lives with HIV and AIDS. They are acutely aware that community members see it as shameful and are likely to gossip. In many cases, family members themselves think it is disgraceful for a close relative to have HIV. Fearing stigma and being discredited, many families behave in ways to minimize the opportunities to endure stigma. Unfortunately, many of these coping strategies effectively stigmatize people with HIV and AIDS further. One common strategy for avoiding secondary stigma is to avoid or isolate the family member who has HIV or AIDS. As an urban respondent reported, Neighbors and people wont stop from gossiping about that family in a coffee ceremony. Due to this families isolate their HIV positive son. A rural respondent explained how friends react to avoid stigmatizing gossip, Even close friends avoid being seen with their friend living with the virus. They do not want the community to see that he is their friend. Several women described how they were asked to avoid social situations in order not to embarrass her family. One said, I have a problem with my family, especially with my father. He does not want me to participate in any kind of social lifeHe always tells me, Please do not show your face to others and do not be close to our relatives. And I think he says this for the sake of his family reputation.

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Similarly another recalled, I went to my fathers house to celebrate his wedding tenth anniversary. My father did not want me to be seen by others and have my pictures taken with them. I stayed there the whole day with out being seen by anyone and came back home. I realized that I am no more considered like any other person. That day convinced me that I am not seen as a human being like others. In some cases, the isolation is more explicit. One respondent said, They isolate the PLHA by saying that he/she has ruined the family name and has made the family to be subject to gossip and to be talked about during coffee time. A male respondent reported, My relatives who live in Addis Ababa have isolated me so as to not lose their dignity and reputation. Especially, my uncle sends me a message that he does not want to see me again after he heard my HIV status because he does not want to lose his reputation. In other cases, the relatives of people with HIV are literally hidden and isolated from community members who could potentially stigmatize them. A male adult informant says, They usually hide them and are treated only by their family members and the family members will never allow anyone to see the patient. The illness of the patient is known only after he passed away. Although not frequent, a more extreme form of isolation and denial of housing resources is the threat or eviction from family housing. An urban respondent reported, Families isolate, kick the son who has AIDS out of their house because they feel that he has disgraced them and put down their pride. A woman with HIV recounted, My parents including my sisters and brothers want me to leave the house because they feel that I have disgraced the family reputation. More common than physically isolating or hiding a person in the family with HIV or AIDS is hiding the fact that the relative has HIV. In fact, this hiding or denial of HIV seemed to be the most common way families respond to secondary stigma. A rural male respondent commented, [Families] will not say he has HIV and make this open to the community. If they do they would feel inferior, discriminated, and be belittled. This was especially true in the rural site. Family members would hide a persons HIV status by denying a relative was sick or by providing alternate explanations of the nature of an ill relatives symptoms. As one rural woman explained, Family members will never allow anyone to see the patient. The illness of the patient is known only after he passed away. It is because they do not want their child to be seen as the victim of HIV. In some cases, family members give the rationale that they are protecting their relative from stigma as well as or rather than protecting themselves from secondary stigma. An urban male explained why he would not disclose the sero-status of a relative with HIV or AIDS, I dont want other people to hate him. If some one is infected with this disease, the community isolates the person and people gossip about the person who has AIDS. They also ruin the name of the family and pride and the name of the person who has AIDS. Due to this I dont want to disclose his HIV status to the people.

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Related to the pattern of hiding a persons HIV status are pleas from family members not to go public with their status, as an urban female participant shares her experience, My sister phoned from the place where she works and said, Please remain settled and quiet if you want us to help you. She said this for the honor of herself not for the sake of me. I never expected a sister who works in a hospital to say this. Those who do not abide by such requests often face rebuke and castigation for potentially exposing their families to disgrace. One woman told us, Because I shared my life experience with university students and that was screened on TV, many of my relatives were angry and insulted me by telephoning at my house. They said this because they were worried for their honor not by my illness. Another woman recounted her sisters reaction, Then she said, You reckless girl, how on earth would you say you have HIV on TV in a country where you have so many relatives? In a select few cases, when families are unable of denying that the person has HIV, people deny being related to an HIV positive family member. As one man who worked with an AIDS support organization explains, One of our members got ill and we took her to the hospital. After treatment we took her to her house. But the family denied that she was their child. They said they made her stay with them for the sake of doing a humanitarian thing. They asked us to drop her there and go.

Coping with Stigma

Coping strategies were a major focus of the diary sub study with people living with HIV and AIDS. Coping refers to the processes that people use to handle stigma and discrimination. People living with HIV used their diaries to record their experiences with stigma and discrimination and their responses to those situations. The data reveal a variety of coping strategies, which were often employed sequentially over time. However, different strategies may be used simultaneously when stigma is faced in different locations or contexts. The strategies range from positive and constructive ones to more negative ones and include: crying, retreating or self-isolation, fighting or resorting to violence, seeking counseling, finding solace in prayer, or confronting stigma by providing information and teaching. Crying seemed to be a particularly common response following a stigmatizing incident. One womans story was quite familiar, people laughed at me and kicked me out. As a result I went home crying with my problems. Crying was one response that was frequently paired with other coping strategies, usually confronting the stigamatizer through arguments or seeking solace and advice from family or others with HIV, as this young man described, I discuss it with my mother. Especially I tell her how her nieces act towards me. I always cry when I raise this issue because it hurts me very much. Another woman said, Even if I am hot tempered and give responses to people, I cry when I get home. Others who have experienced stigma try to protect themselves from further incidents by retreating and isolating themselves. A female participant explains,

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Nobody wants to be close to me except those who do not know that I am HIV positive. I know those people who are close to me will also leave me when they hear the rumor. So, I dont want to be close to anyone. Most of the time, I prefer spending days far from the village. Yet others respond with heated arguing and sometimes violence. Men more frequently reported this type of coping strategy, although women occasionally did as well. One man recounted, [At church] I met a neighbor who directly told me that I am a member of MEKDIM and should not infect the community. We had a fight on this matterThen I asked God to give him what he deserved and tried to control my anger. Another man reported his experience arguing with a taxi driver, The driver knows me and he said You will die soon, why do you quarrel over few cents? I was angry and it became an open fightThen we, including the other passengers, went to a police stationAs we left the police station we attacked the driver and hit him. I was happy, although it is bad to do such things. Constructive responses to stigmatizing experiences abounded as well. In particular, many people living with HIV and AIDS became adept at finding trusted individuals that they could go to for advice, comfort, and solace. These confidantes included friends, close family members, counselors at AIDS support organizations, and other peers living with HIV and AIDS. One young man stated how he copes with stigma, I tell my HIV positive friends. They advise me not to be disappointed about anything, rather that I should ignore it. A female PLHA participant described the positive advice she received as follows: One of my neighbors knows him [an HIV positive home based care worker] and when the care givers left, he asked me about the person. He started to suspect me that I am HIV and AIDS patient. I thought of changing residence. I was worried. Then, I explained my problem to the MEKDIM counselor and I got some relief. Many respondents also reported finding solace in their faith or through their religious leaders. Prayer and counseling were frequently employed coping strategies when stigma was encountered. One woman explained, Most of the times I hear songs and read the bible. There are words in the bible, which can be read when you feel worried. I kneeled and begged God. I do nothing without this. Another woman recounted how she relied on church leaders, This morning I went to the Full Bible Church and told to the prayer leader my problem openly and asked him to help me through prayer. He gave to the religious fathers my prayer topic and they prayed for me. I felt relieved. Others confront the people who stigmatize them directly. A frequently used tactic is to provide information in order to correct the misperceptions that lead to their stigmatizing attitudes. A female respondent explained,

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I cant ignore the misconception they have about HIV and AIDS if I see them practicing it or saying it. As I have told you, there are people who think a person who has HIV and AIDS is a patient who cant move and get up from bed. And when I meet these kinds of people, Itell them that all PLHA are not patients and that PLHA can work and live like any other healthy person. A male participant explains, I discuss with my friends. I share my experience with them and they gradually realize that they dont have to avoid PLHA, and another says, I try to explain that shaking hands, eating and drinking together do not transmit the virus. Many people still have misconceptions about the ways of transmission. The misperceptions that people with HIV and AIDS most often try to dispel are (1) those relating to HIV positive peoples ability to be healthy and lead fully active and productive lives; (2) those relating to correct means of transmission and fears of transmission through casual contact; and (3) those relating to an HIV positive persons ability to respond to treatment of opportunistic infections so as to increase peoples willingness to provide appropriate care when someone with HIV is ill. A variation on this coping strategy is not necessarily to confront the individual who stigmatizes but by taking an active role in educating community members so as to prevent more stigma in the future. Although relatively few people go public with their status in their own community, a number of respondents who reported on the satisfaction they took in doing something constructive to inform their neighbors and reduce stigma in their communities. One female participant commented, I was invited to share my experience with teachers who were participating in a course. I shared what I knew with them and I felt proud in that I have a social responsibility to play. Another recounted, I gave lessons on HIV and AIDS to members of three idirs on the basis of my experience. The idirs wanted to know how to deal with PLHA. They learnt that they have to handle them like any person, bury them properly when they die, give them material and psychological support when they are alive. I was happy in that the community was ready to learn and showed positive attitude to take action in support of PLHA. We agreed that it is not good spending a lot of money for building a monument at the cemetery, instead we agreed that we should give care and support when the patient is alive.

An Indication of Change
Much of the data presented in this report portrays a rather grim picture for people living with HIV and AIDS and their families. Indeed, it reveals that stigma is highly prevalent, affecting various people in many places and in many forms, and has severe personal and programmatic impact. Yet there is a glimmer of hope. Some respondents in both the rural and urban sites reported that people are gradually changing their attitudes toward people living with HIV and AIDS.

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In rural areas, where even basic information on HIV and AIDS has been quite limited until recently, respondents attributed the change to increasing awareness. A young, rural woman said in a focus group, I used to isolate and segregate a person who is suspected to have HIV. Before, I did not have awareness about HIV and AIDS. But now after I took training about HIV and AIDS, if a person disclosed his HIV status, I wont isolate him. I will be close to him. The survey data shows that over 90 % of respondents agree that PLHA, irrespective of gender, occupation and age, need to be given care and support. Over 63% think that they should disclose and educate the community if they happen to live with the virus; still over 66% think that PLHA are isolated and neglected. About 77% say they are sympathetic towards PLHA. However, the fear of casual infection and disgust are there. Just over 45%of the respondents think PLHA should be kept in separate place. Over 75% of respondents think the a PLHA teacher can teach and a PLHA student can go to school, although about 60% blame PLHA and think they got what they deserved. These mixed feelings indicate that there is stigma as well as there is room for stigma mitigation. Young men discussed how information on transmission of HIV and casual contact helped them reduce their fear of HIV and AIDS. A young man in a focus group commented, on learning that people with HIV and AIDS dont die immediately but can lead healthy and productive lives, I used to fear HIV, but not anymore now. I used to fear because I feel that if I contract it, I dont have a chance to live longer. But I have convinced myself instead of fearing HIV it is good to take care of myself. Rural respondents also commented that peoples willingness to care for people with HIV and AIDS when they are ill seemed to have increased. Others noted the difference in how people are treated after death due to AIDS-related causes. A woman explained, There is a big change among neighbors. For example last time a man in our village passed away due to AIDS, the community knew about the cause of his death. But they were treating him properly before his death. He is poor but during the burial ceremony the number of people who were present on the funeral ceremony was very big. And religious fathers were also present to solace his mother. In urban areas, some respondents also noted some changes over time. In contrast with rural areas, the changes were related to the growing prevalence of HIV infection. People have begun to accept HIV AND AIDS as a problem affecting anyone. Consequently they are no longer surprised if they hear that someone is HIV positive and HIV and AIDS has become more normal. A man in the urban site explains, HIV has already become a common thing. For example this day if I have HIV, my neighbors would not be surprisedIf he/she gets HIV, it is considered as a common disease. It is possible that as HIV and AIDS becomes more ubiquitous and is seen as affecting not a particular group of people but everybody, the distinction between them and usa key construct in perpetuating stigmagradually loses meaning. As a respondent noted, The fact that everyone

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of us is threatened by HIV and AIDS directly or indirectly makes people reconsider their attitude toward people living with HIV and AIDS. Urban respondents also reported that the fear of people with HIV and AIDS has declined as compared to the initial stage of the disease and many have stopped isolating them while some openly support people with HIV and AIDS materially and psychologically. Like their counterparts in rural areas, they too described increased willingness to provide care. There may also be a decrease in secondary stigma and greater acceptance of caregivers. As a young woman respondent described, In the previous time, neighbors used to advise my mother to stop me from being a home-based caregiver to PLHA. But nowadays neighbors want their children to work as home based caregivers. They want their children to learn about HIV and AIDS and how to treat PLHA.

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CHAPTER SIX:

SUMMARY AND RECOMMENDATIONS

Summary of Findings
The pandemic is multifaceted in that it is not only a health problem, but also a social, economic, political and cultural problem. Any effective response to HIV and AIDS requires considering this multifaceted nature of the pandemic. This study has tried to reveal one social aspect of HIV and AIDS: stigma and discrimination. It reveals that, not only is stigma a barrier to individuals quality of life and effective programs, but also that existing social norms, values and beliefs have to be challenged and knowledge has to be vastly improved if we were to make significant steps forward in the control of the pandemic through health education as well as policies and programs that address HIV and AIDS. In summary, this research has revealed that: There is lack of clarity on what HIV and AIDS are and how the infection takes place and what needs to be done to prevent it. Misconceptions along correct knowledge of HIV and AIDS lead to confusion and stigmatizing attitude towards PLHA. Families, the neighborhood, community based associations, public meetings, religious institutions, civil societies such as anti AIDS clubs, NGOs, health institutions, and government administrative structures and the media remain the main source of information on HIV and AIDS. However, these sources transmit both correct and incorrect information on HIV and AIDS and, in effect, cause more fear and lack of self confidence to tackle the pandemic than otherwise. Universally, PLHA are seen as people with immoral behavior. Some community groups namely the youth, truck drivers, soldiers, businessmen and sex workers are blamed more than others as the instruments of spreading the infection As compared to men, women are blamed more for spreading the infection in that they get involved in sex work so as to earn a livelihood. However, many participants recognize that the existing cultural beliefs and values about women and men put women in a lower social status and in effect expose both men and women to the infection. For example rich men buy women and also buy HIV and take it to their wives. People living with HIV and AIDS experience a lot of verbal stigma followed by physical and social exclusion and loss of rights such as access to facilities such as housing and health care. Some suffer from internal stigma while their relatives and friends suffer from secondary stigma. All these lead to depressive life and avoidance and exclusion of PLHA. Stigma deters disclosure and access to health services such as VCT. Although most respondents support disclosure and use of VCT services, many of them are reluctant to disclose and use VCT because they fear the stigmatizing response from the community. Stigma takes place everywhere but with more intensity in the household and health care facilities than in other places.

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PLHA try to cope with stigmatizing and discriminatory experiences by adopting positive and negative strategies: crying, retreating, challenging stigma, seeking counseling and support, and getting consolation through prayers. The data shows that stigma is dynamic in that as people learn more about HIV and AIDS their attitudes change. There is hope in that stigma will reduce through education and better understanding of the causes and transmission of the infection and how to give care and support to PLHA. The data shows that many people have started changing their attitudes and some are actively involved in HIV and AIDS education and a significant number of the youth are involved in home based care services to AIDS patients.

Recommendations for the Way Forward

Care and Support People living with HIV and AIDS feel that they are not getting the support they need in order to cope with the problem of HIV and AIDS. Health care settings were identified as a predominant venue for stigma and discrimination. Additionally, people with HIV and AIDS experience stigma in the context of receiving care in the home. Giving health care services to people living with HIV and AIDS is necessary to reduce stigma and discrimination. Yet, the health sector remains poor and ill-equipped to respond effectively to the needs of people living with HIV and AIDS. There is no health care service that focuses on people living with HIV and AIDS. People living with HIV and AIDS are seen along with other patients and at times discouraged to seek health care services because health care providers think that their ailments are not curable. In many instances, health care providers ask people living with HIV and AIDS to go home and take rest. In order for health workers to reduce stigma and discrimination, they need comprehensive training on treating AIDS patients: counseling, management of patient, treating opportunistic infections and social awareness of the pandemic. Strengthening anti-AIDS clubs and home based care would help in reducing stigma and discrimination. Members of anti-AIDS are enthusiastic to help PLHA. What they need, in addition to resources, is training on how to mage PLHA and mobilize the community to be part of the fight against HIV and AIDS, and on how to deal with stigma. Members of anti-AIDS clubs and home based care givers also need material support such as teaching aids and supplementary food for PLHA that they look after. They can also help by improving family and community knowledge; reducing fear so that physical isolation is reduced; providing families with real skills to provide care in non-stigmatizing ways, and modeling non-stigmatizing behavior that others can emulate. Besides giving care services to patients who are ill due to AIDS, they play an important role in raising awareness of people in the community. Both community respondents and people living with HIV and AIDS agree that the members of AIDS clubs are helping people to understand the infection and reduce stigma and discrimination. The work of the home-based care givers is highly appreciated and needs to be expanded.

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VCT services need to be expanded. Such services would enable people to know their sero-status and take constructive measures. Testing of HIV and AIDS at private and public health facilities needs to follow the established procedures for pre and post test counseling. The way the private health institutions do the screening test has been a source of fear, gossip and shock, for they do not prepare the client to cope with the outcome. Additional counseling services for people living with HIV and AIDS (beyond the testing experience) also should be made available and easily accessible. Livelihood Options Ethiopia, being a poor country, most of those with HIV are found in poor families. Poverty has been a driving force that contributes to HIV and AIDS infection, stigma and discrimination. Women engage in sex work because of the constraints of poverty, risking HIV infection and the stigma that comes with it. The poor are subjected to greater stigma and discrimination because they have fewer resources to hide their HIV status and avoid stigma. In addition, poverty exacerbates the fatigue of care giving families. To reduce stigma that is exacerbated by poverty, the government, in collaboration with donors, needs to focus on job creation programs where the poor can get training in skills that enable them to earn decent income by doing decent jobs. As far as Ethiopia is concerned, many communities have lost their traditional ways of coping with poverty. Excessive draught and war and conflict have shattered traditional values of sharing and caring. The only option is to expand on employment opportunities for the people by making wise use of the countrys resources irrespective of location. The government has to face the challenge of creating job opportunities to its citizens. If the youth sees some hope in its future it can embark in constructive activities and safe behavioral practices. This will lead to self-confidence and good self and community image. Improved Information, Education, and Communication Giving intensive and extensive education on HIV and AIDS and the skills to providing care and support to people living with HIV and AIDS has been stressed as a way of controlling the epidemic and reducing stigma and discrimination against people living with HIV and AIDS. The education on HIV and AIDS needs to rebuild self-confidence in that HIV aids can be prevented and promote positive thinking that people can engage in activities that lead to healthy and quality life. Information that associates HIV and AIDS with God and other super natural forces need to be handled carefully. Religious leaders need to focus on what people can do to avoid the infection. Education needs to focus at bringing changes in the values and norms of sexuality and gender. The study showed that discussion of sex and sexuality is considered as a taboo. In effect people are denied to get access information and knowledge to understand and manage their sexual behavior and needs. This denial exposes them to unsafe sex risking STI , HIV and AIDS. It is time that openness on sexual behavior is practiced to curtail the spread of the pandemic. This can be done through the promotion of sex education formally in schools and informally in various available community forums including the home. The level of commitment of both the public and other social sectors towards curtailing the spread of HIV and AIDS is superficial and in essence ad-hoc. One of the main sources of stigma is lack of 66

adequate information on the pandemic. It is now clear that government and other concerned organizations (i.e., civic societies and NGOs) have to run HIV and AIDS programs that address the root causes of the problem through community-focused activities. It is essential that communities are helped to understand and question "accepted" or "tolerated" practices such as tolerating men to practices sex freely that expose them to the infection This implies promoting community conversation on HIV and AIDS. Health education, which is the basis of effective prevention, is almost non-existent especially in rural areas. Messages dealing with health remain ad-hoc. As a result they create confusion and generate misconceptions, gossip and rumor. Health education has to be given priority. It has to be provided by knowledgeable and reliable people. Many people have serious misconceptions on transmission of the infection which underpin their discriminating and stigmatizing attitude towards people living with HIV and AIDS. The people who give education on HIV and AIDS have to have clear and unambiguous understanding of HIV and how it gets transmitted, how it can be prevented and what needs to be done to give care and support to people living with HIV and AIDS as well as how this has to be done. Community members also need to know more about the longevity of people with HIV, their capacity to be productive individuals participating in work and community affairs, and that opportunistic infections are treatable to counteract the perception that people with HIV are useless and will soon die. Otherwise the stigmatizing behavior of people will not change as desired. One way to make health education effective is to make it more methodological in that people be allowed to identify their health problems and discuss them openly. For example people can discuss HIV and AIDS and agree on how to prevent it, instead of health people forcing them to follow some ways of preventing it. If people choose to abstain from sex or engage in one to one sexual relationship it would be wise to help them address the cultural values and norms that allow men to practice sex before marriage and have many sexual partners. This would enable them to pass decisions that allow them change their norms and values of sexual relation. The communication strategy followed in HIV and AIDS education is still based on fear. The imagery of being an AIDS patient is scary. This strategy has fueled HIV infection and HIV and AIDS related stigma and discrimination. It discourages disclosure and seeking VCT and other health services. It promotes denial, hiding and ignorance. The person living with HIV and AIDS is portrayed as a walking skeleton, irresponsible drunkard, promiscuous person and hooligan. This portrayal has generated stigma and resulted in discriminatory activities on those living with the virus. This communication strategy has left people to be hopeless and simply wait for a miracle to happen. The media has to portray good practices that people do to avoid infection and care for people living with and orphans of HIV and AIDS. Messages need to be based on the belief that HIV and AIDS can be avoided without stigmatizing people who have HIV; that caring and supporting PLHA is a positive thing to do; and that stigma and discrimination have to be eliminated if we are to respect the fundamental rights of people and deal with the epidemic effectively. They should avoid reiterating stereotypes and reinforcing blame on selected population groups. Through effective communication, we can recreate norms, values and beliefs that can end stigma.

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It is high time that the media played these roles and motivated other existing structures, such as religious and secular institutions, to do the same. Active Participation of People Living with HIV and AIDS This study showed that people believed the existence of HIV and AIDS when they saw PLHA disclosing and teaching on how they got infected and what it means living with the virus. The fact that healthy looking people disclosed that they live with the virus enabled people to understand that there could be healthy looking people and living with the virus. This helped them see the difference between HIV and AIDS. It also enabled people to see that PLHA can work and can be useful to the community. These conceptions minimize stigma and discrimination. Therefore one way of tackling stigma and discrimination and making preventive aspect of HIV and AIDS meaningful is to engage PLHA in active life in the community. People should see others shaking hands, eating and hugging people living with HIV and AIDS. Legal Protections Laws need to be reinforced to protect the rights of people living with HIV and AIDS to be free from discrimination. Laws that protect people living with HIV and AIDS at the family, community, and legally established institutions (public, private, and civic) need to be formulated specifically addressing discriminatory acts enacted explicitly and/or implicitly. Advocacy organizations need to work hard in this respect. The access of PLHA to resources such as employment, housing, protection of confidentiality and rights to health care need special legal protection for PLHA. The right to demanding safe sex by women needs to be legalized.

REFERENCES
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Family Guidance Association of Ethiopia (FGAE). 2000. HIV AND AIDS in Ethiopia. mimeographed (proposal) Family Health Department. Ministry of Health. (2002). Five-Year action Plan for adolescent Reproductive Health in Ethiopia. Family Health Department. Mimeographed. Addis Ababa, Ethiopia. Federal Democratic Republic of Ethiopia (FDRE). 1998. Policy on HIV AND AIDS of the Federal Democratic Republic of Ethiopia. Addis Ababa, Ethiopia. Gebre, Solomon. 1990. Sexual Behavior and Knowledge of AIDS and other STDs; A Survey of Senior High School Students. Ethiopian Journal of Health Development, Vol. 4, No. 2, Addis Ababa, Ethiopia. Goffman, E. 1963. Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster inc. Kidanu, Aklilu, Hailom banteyerga (2002). In-depth study of the knowledge, Attitude Behavior and Practice (KABA) of Internally Displaced Persons (IDP) in Ethiopia toward HIV AND AIDS and their Health Status and Medical Care Assessment. Addis Ababa, Miz-Hasab Research Center and UNAIDS. Mehret, Mengistu, Lev Khodakevich, Debrework Zewde, Seyoum Ayehunie, Getachew Gizaw,Bekele shanko,Hailemichael Manore, Assefa Gemeda, Fassil Ketema, Mengesha Yadeta, Demissew Bekele, Tigist Kebede, Taddesse Fissehaye, Semunegus Lakew, Refissa Bekele.1990a. HIV-1 Infection and Some Related Risk Factors Among Female Sex Workers in Urban Areas of Ethiopia. Ethiopian Journal of Health Development, Vol. 4, #2, 1990.Addis Ababa, Ethiopia. Ministry of Health (MOH). 1998. AIDS in Ethiopia. Epidemiology and AIDS Dept., Ministry of Health. Addis Ababa, Ethiopia. Ministry of Health (MOH). 2000. (a). Current Status of HIV Sentinel Surveillance Data and AIDS Case Reporting in Ethiopia. Ministry of Health. Addis Ababa, Ethiopia. Ministry of Health (MOH). 2000.(b). POLICY Project: Data files of the AIM Model. Ministry of Health Addis Ababa, Ethiopia. National AIDS Council. 2001. Strategic Framework for the national Response to HIV AND AIDS in Ethiopia (2001-2005). National AIDS Council. Addis Ababa, Ethiopia. National Committee on Traditional Practices in Ethiopia. (NCTPE). 1998. Baseline Survey on Harmful Traditional Practices in Ethiopia. National Committee on Traditional Practices in Ethiopia, Addis Ababa, Ethiopia. Transitional Government of Ethiopia (TGE). 1993. National Health Policy of Ethiopia. Transitional Government of Ethiopia. Addis Ababa, Ethiopia. UNAIDS. Report on the global HIV?AIDS epidemic. UNAIDS/o2,26E. July 2002. Geneva Switzerland. World Bank 2000/1. World Development Indicators. Oxford University Press.

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