1.Background and rationale
Introduction
The focus of the World AIDS campaign for the years 2002-2003 has been particularly on stigma,
discrimination and human rights.
The main objective of the campaign was to prevent, reduce and ultimately eliminate HIV/AIDS
stigma and discrimination, wherever it occurred and in all its forms. HIV/AIDS related stigma and
discrimination are universal, occurring in every country and region. It is triggered by many forces,
including lack of understanding of the disease, myths about how HIV is transmitted, prejudice, lack
of treatment, irresponsible media reporting on the epidemic, the fact that AIDS is incurable, social
fears about sexuality, fears relating to illness and death (Peter Aggleton & Richard Parker, 2002:5).
Throughout the world, shame and stigma associated with HIV/AIDS have silenced open discussion,
both of its causes and of appropriate responses. This has caused those infected with HIV and affected
by the disease to feel guilty and ashamed, unable to express their views and fearful that they will not
be taken seriously. And they have led politicians and policy-makers in numerous countries to deny
that there is a problem, and that urgent action needs to be taken.
The power relations that underscore gender relations and that tightly intersect with discrimination of
women mean that women are unable to say “No” to unwanted or unprotected sex. There are well-
documented cases of people with HIV/AIDS being stigmatized, discriminated against and denied
access to services on the grounds of their sero-status. At work, in education, in health care and in the
community, people may lack the education to understand that HIV/AIDS cannot be transmitted
through everyday contact, and they may not know that infection can be avoided by the adoption of
relatively simple precautions (Peter Aggleton & Richard Parker, 2002:5).
HIV stigma doesn’t just come out of the blue; it is about deep-rooted social fears and anxieties. So,
understanding more about these issues, and the norms they reinforce, is essential to adequately
responding to HIV/AIDS related stigma and discrimination. Otherwise, we run the risk of developing
programs and interventions that are not comprehensive, thus achieving little impact.
What is stigma?
Stigma is a process of devaluation. The origins of the word “stigma” can be traced to classical Greece
where outcasts groups were branded, or physically marked as a permanent measure of their status. A
stigma is any characteristic that sets an individual or group apart from the majority of the
population, with the result that the individual or group is treated with suspicion or hostility (Giddens,
2000:127). AIDS is an example of illness as stigma. Most forms of illness arouse feelings of sympathy
or compassion among non-sufferers.
When an illness is seen as uncommonly infectious, however, or is perceived as somehow a mark of
dishonor, the ‘healthy’ population may reject sufferers. This was true of people afflicted with leprosy
in the Middle Ages, who were thought to be sinners punished by God, and were hence disowned and
forced to live in separate leper colonies (Giddens, 2000:127). Even, in South Africa , the famous
Robben Island has been a place where leprosy patients where kept away from society. Stigma is not
unique to HIV/AIDS only. It has been documented with other infectious diseases such as TB and
Syphilis. It is common with diseases that are seen as incurable, disfiguring and severe.
In a less extreme way, AIDS often provokes such stigmatization today, in spite of the fact that, like
leprosy, the danger of contracting the disease in ordinary day-to-day situations is almost nil. While a
person who is HIV positive may live for many years without developing AIDS, once the disease
appears, it is effectively “ a death sentence” (Giddens, 2000:127). Its effects are tragic, in this respect it
is seen as unlike other major killer diseases in industrial societies today, which mostly strike at older
age groups.
When analyzing the roots and results of stigma it is important to demonstrate how both men and
women experience stigma and how both are differently affected by it. Studies of stigma have shown
that the stigma associated with HIV is greater than that of other stigmatized illnesses (Lee, kochman
& Sikkema, 2002:309).
According to Miles (1991:42), whatever meaning is given to health by lay people, ill health represents
a breakdown in the normal, expected state of health and well being, a situation when things go
wrong, a deviation from how things should be, and usually are.
2. Literature review
Scholars, academics and authors have tended to differ on the importance of biological versus social
and cultural influences on human sexual behaviour. An important similarity in the research on
gender differences and on sexuality has been that both fields have looked to the animal world for
trying to understand humans (Giddens, 2000). There is a biological basis to sexuality, since female
anatomy differs from that of the male.
Biologists argue that there is an evolutionary explanation of why men tend to be more sexually
promiscuous than women.
Judith Lorber distinguished about ten different sexual identities among human beings: (1)
Heterosexual women (2) Heterosexual men, (3) Lesbian woman, (4) Gay man, (5) Bisexual woman,
(6) Bisexual man, (7) Transvestite woman (a woman who regularly dresses as a man), (8) Transvestite
man (a man who regularly dresses as a woman), (9) transsexual man (a woman who becomes a man)
and (10) Transsexual woman (a man who becomes a woman).
Due to the fact that sexual practices are diverse, the accepted types of sexual behaviour also differ
between different cultures.
Now regardless of the different sexual identities, it is important to note that the values of society in
general have traditionally been patriarchal in nature. And because of this, sexism, religion and
western attitudes have also tended to perpetuate myths about the differences in gender and sexual
behavior.
Christianity and various different denominations have held divergent views about the role and place
of gender and sexuality in society. In the 19th century, religious presumptions about sexuality were
partly replaced by medical ones. In Victorian times, there was sexual hypocrisy, in that many men
who were thought of as behaved, were the ones who regularly visited sex workers or even kept
mistresses. Yet such kind of behaviour was treated leniently, whereas women who took lovers were
labeled, shunned, branded adulterous and scandalous. The differing attitudes towards the sexual
activities of men and women formed a double standard, which has long existed and still applies.
Religion and the medical and health professions have allowed sexism, gender and sex stereotypes to
influence their practices as well. Most studies have shown that most patients in therapy, for instance,
are women (Sue, Sue & Sue, 1997). The role of patient is highly consistent with a female sex role
characterized by weakness, dependency, irrationality, and acceptance of care (Williams, 1977 quoted
in Sue, Sue & Sue, 1997).
Relative to the incidence of physical and medical illness among women and men, women are more
likely to seek medical and psychiatric help. This tendency may be explained in terms of socialization:
a woman’s sex role permits her to seek help, whereas men may consider it “unmasculine” to do so
(Chesler, 1971,Shapiro et.al, 1984 quoted in Sue, Sue & Sue, 1997).
Modern feminist psychologists (Chesler, 1972, Chdorow, 1978,Williams, 1977, Dworkia, 1984,
Gilligan, 1982 & Holraya, 1980) have pointed out several socio-cultural factors (rather than inferior
biology) as contributing to the denigration of women. Images of women throughout history have
been fearful or unflattering. In some cases, women were portrayed as seductress, lustful, or evil,
needing to be controlled, subordinated and devalued. They were and are still treated as property,
burned, raped and accused of being witches, and excluded from positions of power. All these factors
perpetuated and justified men’s need to control women.
Sexual relations in much of Africa are characterized by high levels of partner change among single
young women, and among men of all ages, married and single (Jackson quoted in Zimbabwe
Women’s Resource Centre & Network News Bulletin, 1993:15).
A survey conducted in 2002 among some 1,000 physicians, nurses and midwives in four Nigerian
states showed disturbing findings. One in 10 doctors and nurses admitted having refused to care for
an HIV/AIDS patient, or having denied HIV/AIDS patients admission to a hospital. Almost 40%
thought a person’s appearance betrayed his or her HIV-positive status, and 20% felt that people living
with HIV/AIDS had behaved immorally and deserved their fate.
A lack of knowledge about the virus (often flanked by denigrating attitudes towards people living
with HIV) seemed to be one factor fuelling the discrimination. Another was fear among doctors and
nurses about exposure to possible infection as a result of lack of protective equipment. Also, at play, it
appears, was the frustration at not having medicines for treating HIV/AIDS patients, who therefore
were seen as doomed to die. Studies in other regions show that such attitudes and actions are
commonplace.
In the Philippines, a recent study among persons living with HIV/AIDS found that almost 50% of
respondents had experienced discrimination at the hands of health care workers; while in Thailand,
11% of respondents said they had been denied medicine because of their sero-positive status, and 9%
had experienced delays in treatment.
Some 70% of people living with HIV/AIDS in India said they had faced discrimination, most
commonly within families and in healthcare settings, according to the recent International Labour
Organisation (ILO) research. Such experiences have prompted efforts to promote the greater
involvement of people living with HIV/AIDS in India , where several NGO’s (Non-Governmental
Organisations) and networks of HIV positive people are working to reduce discrimination in local
hospitals.
Many people living with HIV/AIDS do not get to choose how, when and to whom to disclose their
HIV status. When surveyed recently, 29% of persons living with HIV/AIDS in India , 38% in
Indonesia , and over 40% in Thailand, said their HIV positive status had been revealed to someone
else without their consent. In many cases, test results were shared with persons other than the spouse
or family members; one in nine respondents in a Thai survey said their status had been disclosed to
government officials. These kinds of violations of the right to privacy undermine HIV/AIDS programs
by deterring people from finding out their sero-status, and thus threaten public health as individuals
unknowingly transmit HIV to others.
Given the close links between HIV/AIDS related stigma, discrimination and human rights violations,
multiple interventions and programs are needed.
Stigma devalues and discredits people, generating shame and insecurity. Stigma is harmful, both in
itself since it can lead to feelings of shame, guilt and isolation of people living with HIV, and because
it prompts people to act in ways that directly harm others and deny them services or entitlement-
actions that take the form of HIV related discrimination. Such unjust treatment can be tantamount to
a violation of human rights.
People living with HIV/AIDS have been stigmatized and discriminated against worldwide since the
epidemic began. In South Africa, instances of overt discrimination, including violence remain
common. Worse still, in South Africa up to 37% of rural women attending prenatal clinics test
positive in annual anonymous surveillance surveys (Harrison, Smit & Meyer, 2000). Women are seen
to be the axle around which HIV infection in Southern Africa revolves. Men, primarily through sexual
intercourse, may infect them and, in turn, the women frequently infect their infants through
pregnancy, childbirth and breastfeeding.
Worldwide, women are more vulnerable than men to HIV infection during unprotected vaginal
intercourse (Fowler, Melnick & Mathieson, 1997;UNAIDS, 2000)
HIV/AIDS is today seen as the most serious epidemic and threat to public health systems around the
world. Since its discovery in the 1980’s, the number of infections has increased every year. In South
Africa , by the year 2000, there were estimations that about 5 million South Africans were infected
with HIV/AIDS. It has also been estimated that more than 60 million people worldwide have lived
with HIV/AIDS since its genesis, and 20 million of these people have as a result since died (UNAIDS,
2002).By 29 January 2004, estimated worldwide HIV infections were put as 55, 769, 791 at 12:40 pm
(Mail & Guardian HIV Barometer, January 30 – February 5 2004).
Despite these debates about the statistics on the prevalence of the HIV pandemic, over the years
women have tended to be labeled or branded as the transmitters of the HIV/AIDS disease. A number
of studies have focused on women and HIV/AIDS. However, most of these studies have also focused
more on women’s vulnerability to the HIV/AIDS epidemic. Evidence presented has indicated that
certain people are more vulnerable to infection than others. This has been seen in demographic
characteristics, geographic distribution and access to resources of those infected (Strebel, 1993).
People’s constructions and conceptions of gender identity, as well as sexual attitudes and inclinations
linked to them, are formed early in life, and, as adults, people take them for granted.
HIV/AIDS remains a highly stigmatized disease among African communities and other communities
world-wide. Stigmatization is currently the biggest obstacle to beating the pandemic. There is the
challenge of combating the stigmatization of condoms as well. Many people with HIV/AIDS
experience discrimination from strangers, families, friends, lovers, healthcare workers and
government. Discrimination is a result of ignorance (HIV in our lives, 2003:67). Many people still do
not know how HIV is transmitted and because of lack of knowledge this often leads them to fear
about HIV.
Stigma has been studied by relatively few social scientists. According to Levett (1995:4) stigma is not
a simple matter of labeling, or being labeled, although it includes these. Inequality and difference are
always implicated. Lee & Loveridge (1987:1, Preface) also notes:
“Inequality… is a social construct supported by a complex process in which characteristics are
attributed to the disadvantaged which then become the justification for that disadvantaged
position in society. This stigmatization in turn further handicaps any attempts by the
disadvantaged to alter or challenge this apparently normal set of hierarchical social relationships”.
Perceptions that have come out from traditional rural communities have been that condoms are a
western product and not African, and therefore a carrier of HIV/AIDS. At the XIV International AIDS
Conference Nelson Mandela said,” Stigma, discrimination and ostracism are the real killers”. In his
closing speech he said that AIDS is a war against humanity.
Furthermore, stigmatization has and continues to remain the main stumbling block for those
wanting to disclose their status. For example, in Botswana, treatment for people living with
HIV/AIDS is accessible, but people are not coming forward because of how society treats HIV positive
people.
During the initial start up of the stigma project, we were given an individual assignment to visit any
ARV or PLW site to interview someone living openly with HIV/AIDS about their experiences before
and after disclosing their HIV status, and to pay particular attention to women’s experience and see
whether they differ from those of men.
The interview was carried out with a NAPWA (National Association of People Living with
HIV/AIDS) activist, whom for the purposes of anonymity I refer to as Nohlanhla. From the interview
one learned that we still have to free men from denial. Nohlanhla’s fiancée is one of those men who
find it difficult to admit their infection for fear of being branded as “not man enough”. This is a result
of what society makes us believe, that a man who succumbs to sickness is not man enough. When she
told her fiancée about her status, he ran away. This explains why women are often seen as the axle
around which HIV infection in Southern Africa revolves ( Wassenaar & Richter,2000:6).
The depth of stigma and discrimination cannot be in anyway underestimated in the African
communities. The Treatment Action Campaign ( TAC ) and the National Association of People living
with HIV/AIDS (NAPWA) have shown that greater access to effective care, prevention and treatment
is vital to breaking the cycle of stigma, discrimination and human rights abuses.
3. Aim of the study
South Africa suffers one of the World’s highest HIV infection rates, but people deny the disease
because HIV is linked with sex. People living with HIV/AIDS, it seems, are labeled in South Africa
and globally as living an immoral life. It seems that discourses on HIV/AIDS intersect powerfully with
social taboos and stigmas related to sexuality and gender.
Over the years, women have tended to be labeled or branded as the transmitters of the HIV/AIDS
disease. A number of studies have focused on women and HIV/AIDS. However, most of these studies
have also focused more on women’s vulnerability to the HIV/AIDS epidemic. Evidence presented has
indicated that certain people are more vulnerable to infection than others. This has been seen in
demographic characteristics, geographic distribution and access to resources of those infected
(Strebel, 1993).
The purpose of this study is to investigate the way in which gender identity intersects with
constructions of HIV/AIDS, in particular the following:
- Investigate whether HIV/AIDS is seen as a woman’s disease and why.
- Investigate if and why women are more stigmatized than men.
- Determine what socio-economic and cultural issues contribute to the stigmatization of women
living with HIV/AIDS.
- Document community responses and perceptions to HIV/AIDS, in particular stigma attached to
both men and women PLWHA.
4. Methodology of the study
This study utilized qualitative research methods. The data was collected through six focus group
discussions and provides a narrative analysis of focus group discussions.
Different authors on qualitative research methods have had divergent views on which methodology is
actually useful. They have also acknowledged the fact that each method has got its own limitations
and strengths. According to Denzin & Lincoln,1998:3 qualitative research methodology encompasses
the usage of multiple methods to collect data that informs an in-depth understanding of issues.
Qualitative multiple methods include a study of empirical materials, case studies, interviews, personal
experiences and other methods. Socialist Feminist research methodology guided both the research
methodology and the focus group discussion so as to encourage debates on gender and sexuality.
Socialist feminists view patriarchy and capitalism as equally important forces in explaining the
inequalities in society. They study how differences among men (in the access to power and other
resources) help to explain the different ways in which men exploit women. They focus on the social
relations of power (especially economic power) that enables men to control women. It is for this
reason I felt that this view or method could help in understanding the social implications of HIV for
women and men, and not in isolation from the position of both sexes economically and otherwise.
A vignette was used in the focus groups to introduce the topic to the participants. The preferred
methodologies used in general psychological stigma research tend to be vignettes followed by
category based inventories where, for example, alcoholism, mental illness, or people with cancer are
rated on social distance Bogardus scales to provide quantitative measures of stigma. Popular criterion
measures are devaluation, avoidance and rejection, hierarchical comparisons of specific stigma
categories; judgements of unpredictability and social discomfort have also been used (Levett, 1995:6).
The participants had a picture discussion. The discussion centred on what the participants think was
happening in the picture. Why do they think this is happening?
5. The data collection process
5.1 Population
The target population of this study was the focus groups that included both men and women living
within the vicinity of Khayelitsha Township in the Western Cape, who are between the ages of 18 and
55. Each group included between 10-12 participants. Some groups were mixed and some had same
sex group members.
5.2 Focus group questions
The focus groups questions were developed during the January 2004 Penn State/HSRC workshop at
the University of the Western Cape. This was developed in conjunction with my mentor (See
appendices). During the workshop it was decided that questions could be direct, adapted, refined or
adjusted depending on the flow of the discussions during focus group sessions.
5.3 Focus groups
The 62 participants were recruited for the focus groups through a community member and a stigma
project colleague. A letter of introduction to the community was made through the HSRC (Human
Sciences Research Council). Most of the participants were unemployed and some came from the
different sections of Khayelitsha. Khayelitsha can be classified as a poverty-stricken township due to
the number of shacks that have been erected within the vicinity and lately some residential areas. The
dynamics of the area also includes the “emerging” middle class, which have 4-roomed houses.
Khayelitsha can thus be classified as a working class area.
During the focus groups, a vignette was read and used by the co-facilitator to introduce the topic. The
vignette shows a protruding hand of a man pushing a critically ill woman away. The use of the
vignette was to gauge people’s perceptions about HIV/AIDS stigma.
The set-up and sitting arrangement for the focus groups was such that chairs were set in a round
way, so that participants could see each other and that they could also maintain eye contact with
both the researcher and the facilitator.
5.4 Co-Facilitator
I used a co-facilitator in the data collection process, since there was the issue of language barrier.
Though I’m able to communicate in Xhosa, I felt that I’m not quite fluent in the language and the
concepts used at times might a bit confuse me. Another reason to have the co-facilitator is that the
presence of a woman researcher in groups of women is said to create a sense of shared experiences
among the participants (Finch in Strebel,1995).
The co-facilitator is both a psychology lecturer and a stigma project member who stays in the
community. She was very helpful in translations when it was needed. Much meaning was not
therefore lost, as I was also scribing or writing my notes to avoid as much as possible to lose meaning
or the flow of the discussion.
5.5 Procedure
Each focus group lasted between 1 and 2 hours. At the beginning of sessions, the co-facilitator
welcomed and thanked the participants for volunteering and explained the purpose of the project.
The participants were asked for permission to use the tape recorder. Participants were also told and
given an explanation that they should not use their names during the discussions. Each participant
was given R50.00 as a token of appreciation for participating in the study and as a stipend as some of
them were coming from the different sections of Khayelitsha.
The fieldwork commenced in July 2004. The purpose of the fieldwork was to record community
perceptions and responses to HIV/Aids and stigma. This involved a total of 62 participants who
participated in 6 focus groups conducted in Khayelitsha.
6. Major findings
The data transcriptions illustrated the problems that women living with HIV/AIDS face on a day-to-
day basis. In the whole 6 focus groups, the participants have shared their different reactions and
experiences. In general, what could be picked up from the participants was that:
- Much of the stigma attached to HIV/Aids is that HIV positive women and men got infected due to
their promiscuous behavior. Whilst there is no truth in this view, there is still a need to educate people
that promiscuity is a minor determinant of HIV risk.
- Unemployment among black people, “the sugar daddies” and the socio-economic factors has been
cited as factors that make women more vulnerable or at risk of contracting HIV/AIDS.
- The concepts of “Izibethi”, “Ingangara” “ Indoda” or “ O fuze Tata wakhe” [meaning he is like his
father or “like Father like son”] particularly tend to mislead the youth and the elders, in that a man
who has many girlfriends is seen as a “boss,” and this forms some kind of “ township masculinity”
which encourages teenagers and young girls to go for, sleep, or have unprotected sex with older men
who have material possessions (e.g. money and an expensive car). The combination of having money
and an expensive car tends to put people at a high risk of infection. Men’s promiscuous behavior,
dominance and economic advantage encourages and perpetuates patriarchy, leading to the pervasive
spread of HIV/AIDS.
- Sex has become a commodity, in that women who do not have money tend to get a man who will
assist or bring the groceries into the house.
- Young girls are particularly at high risk “They (young girls) are after money, clothes, fashion.”
- People who are HIV positive become subject to gossip and ridicule, as one participant put it, ” They
are seen as a curse, a shame and as carriers of the disease”
- Family members are not honest about their feelings towards people living with HIV/AIDS, as one
participant puts it, ” Stigma also starts at home, for example, you won’t wash dishes or at times you
won’t be told directly that you should not do this or that”
- Men are given comforting names ”Izibethi”, indoda, etc, whilst women are given denigrating names
such as hoover, isifebe, Henyukazi, etc.
- Churches or religious bodies also fuel stigma, as this participant put it, “They’ll tell you that
HIV/AIDS doesn’t exist.”
- Women are also part of stigmatizing other women, and in turn fuel stigmatization.
- Testing and disclosure are recognised as difficult, because of stigma, violence, and loss of income,
blaming and being condemned.
- Traditional healers also fuel stigma, according to one participant, who said, ” Traditional healers
point fingers if they can’t diagnose your condition, they’ll say you are bewitched by so and so.”
- Male power and promiscuity is endorsed and the males are often protected, as some of the
participants commented.
- Men who have money or income are at greater risk than men who don’t have any income. This is
evident in the construction of “izibethi” or “ingangara,”etc - men who have money and material
possessions and thus multiple girlfriends or partners.
- The effect of income on HIV stigma seems different for both men and women.
- Women are at times at higher risk of infection due to reliance on regular financial support, which
they exchange for sexual favors.
- Clinics or health institutions and nurses aggravate or perpetuate stigma, as one participant
commented, ” Nurses and counselors should not sit in offices or clinics, they must also go to the
community because the stigma also comes from nurses as well. They gossip about patients, and it
becomes worse when this reaches the community.” Another participant pointed out that ”when you
enter the clinic, you’ll find that nurses like to be in groups gossiping. This gossiping contributes to the
stigmatization of people.”
- Males are not stigmatized, as this participant rightly put it, “Because men have power or physical
power, this serves as a threat to those who want to stigmatize men.”
- Women who become infected may be seen as having been sex workers, promiscuous.
- Perceptions that a woman who doesn’t breastfeed is HIV+. As this participant put it, ” When I had
my first child, I didn’t breastfeed her and the second wasn’t breastfed, whilst the third was breastfed,
all because these children did not want to be breastfed anymore- so it ended up like people become
suspicious, that you are HIV positive.”
- Images of HIV/AIDS in the media tend to suggest that it is ‘a gay disease’, an American disease to
wipe out Africans, and a ‘woman’s disease. These stereotypes fuel stigma and reinforce beliefs
(cultural) which are not true.
- Most women die from HIV/AIDS, so it’s a woman’s disease.
- Men refuse to wear condoms, as illustrated in this view, ”I can’t wear a raincoat.” Some men would
say that they haven’t seen their grandfathers and parents wearing a raincoat [condom] and they won’
t do it as well.
-Impact of stigma is mediated by gender and its impact is experienced more by women than by men.
- For many women who are infected or affected, their position is characterized by financial
dependence and their financial or social position cannot be examined in isolation from their position
in society.
- Culture as a belief and practice of a community serves as a design for living and it is transmitted
from one generation to the next, and it is normally slow to change. As a result, this female participant
said, “ Men don’t want to use condoms, culture dictates that. If me, as the wife, request the use of a
condom, he will call the elders.” Others say that, “ o galela eplastiking”, meaning you are ejaculating
into a plastic.
- People with HIV/AIDS are subjected to gossip, ridicule, and rejection; and for women it’s worse, in
that they become subjected to violence once their partners know their status.
7. Conclusions and Recommendations
This study focused particularly on one South African township, Khayelitsha. It would be ideal or
important to do comparative studies with other South African townships to find out if people hold
similar beliefs, and if what is learned is the same as in Khayelitsha.
This study revealed that women, due to their social or economic status, can at times put their health at
risk; that those who are in marriage cannot negotiate safer sex; and those who are unemployed run a
higher risk of contracting HIV/AIDS. This is all about the “buying power” that working men have,
and that those men who have buying power tend to target women who are economically vulnerable.
Women are much blamed for their infections and they face different experiences, frustrations,
negative responses, etc., as a result of the stigma attached to HIV/AIDS. Culture tends to oppress
women to a certain extent, as one woman put it, “According to culture, men are the ones who have
power and control.”
8. Recommendations from participants
The attitudes of health workers is cause for concern. The nurses should be educated on how to
educate the public around HIV/AIDS. They currently don’t have a good approach to patients and
people.
Support groups should go into the community. They should have roadshows and drama
groups. It is important to have respected persons from the stigmatized community share their life
stories.
HIV+ people should join in on community projects, e.g.: gardening, they should be seen as
productive people.
There should be posters for example, “as big as ANC posters depicting President Thabo Mbeki”;
posters should be visible and should not only be in the clinic.
People hide HIV/AIDS, you’ll hear that it is cancer, TB, diabetes that killed so and so. For as long
as we are not open, people will continue to hide it.
Parents should talk about HIV/AIDS to their kids or children.
We must change the strategy in HIV/AIDS education, explain whether HIV causes AIDS; get
celebrities who are infected to be part of the awareness programs.
Families & parents should be a platform where the issues of HIV/AIDS are raised, to further
reduce stigma.
There should be a law enacted to deal with stigma, and the law should be harsh and have a
punishable offence. This could deter people from accusing each other, labeling each other, etc.
More and more community workshops are needed.
Put more messages about HIV/AIDS stigma on television in programs like “Asikhulume/Let’s
talk” on TV, on radio, to further educate people about stigma.
Need to have the Department of Health on board and the department should print T-shirts,
tracksuits.
Government should do something about the clinics and clinic staff, most are not working.
Treatment information should be shown on posters.
We must challenge stigmatizing statements such as, “People who sleep around deserve what
they get” or “If I got HIV/AIDS I’ll kill myself.”
9. Learning outcomes
The participants in these focus groups were not asked their status. But one could pick up that there
were those who are HIV positive and as a result they feared stigmatization from their respective
communities.
It would be important, as said earlier, to look into the meaning underlying words such as hoover,
ingangara, and izibethi, because there might be different variations of these concepts in the different
townships and rural areas of South Africa. But most important, it can be interesting perhaps to find
out the meaning of these subtle, yet often at face value, deeply hidden concepts for us to redefine the
masculinity and femininity in the face of the HIV/Aids epidemic.
There is still a need to come up with new programs to de-stigmatize HIV/AIDS. People tend to think
of HIV/AIDS as destructive, for them it represents some form of inactivity, exclusion from society.
Throughout the sessions, one could pick up that people also tend to rely on the sum of knowledge and
beliefs that exist in the community, place and society, without necessarily questioning it. So, here it
becomes important to use indigenous knowledge systems as a tool to educate people as well, since
oral tradition tends to be a important aspect for the African community.
Much of the information and knowledge that was picked up has been shared with a number of
stakeholders. The recent ones being:
The Men’s Conference held on the 27 November 2004 at the Alexandra Township organised by
ADAPT (Agisanang Domestic Abuse Prevention &Training)
The Gauteng Province Men’s Summit held in Pretoria , Sammy Marks Square organised by the
Gauteng Provincial Government Department of Social Development
This was to encourage men to take an active part in the prevention and elimination of violence
against women and children, particularly in the context of HIV/AIDS, and for them to increase men
and boy’s responsibility to adopt safe and responsible sexual and reproductive behavior.
References
Aggleton, P & Parker, R.2002.World AIDS Campaign 2002-2003 "A Conceptual Framework and
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Quiet Mountain Essays
Gender, HIV/AIDS and Stigma:
Understanding Prejudice Against Women Living with HIV/AIDS [i]
by
Tshipinare Marumo
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Mr. Marumo is a gender activist and writer, whose work has been published in publications such as The Ripple-
Effect, South Africa’s Corporate Wellness Information newspaper and the AIDS Legal Network Quarterly.
He was formerly employed by the Gender and Human Rights NGOs Gender Education & Training Network
(GETNET), People Opposing Women Abuse (POWA), and the University of the Western Cape’s Women &
Gender Studies Department in South Africa.
He is currently employed by the Commission for Gender Equality (CGE), one of the six institutions set up under
terms of the South African Constitution to promote democracy and human rights as an Information and Resource
Centre Manager. He holds a Masters in Library and Information Science (M.Bibl) from the University of the
Western Cape, Cape Town, South Africa.
[i] Research paper Supervisor: Professor Tammy Shefer, Department of Women and Gender Studies,
University of the Western Cape. A form of this paper originally appeared in the AIDS Legal Network Newsletter.
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