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Understanding prejudice against women living with HIV/AIDS
Research paper by Tshipinare Marumo.
Supervisor: Professor Tammy Shefer,
Department of Women and Gender Studies,
University of the Western Cape
The focus of the World AIDS campaign has been particularly on stigma, discrimination and human rights.
HIV/AIDS related stigma and discrimination are universal, occurring in every country and region. Throughout the world, shame and stigma associated with HIV/AIDS have silenced open discussion, both of its causes and of appropriate responses. 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 stigmatised, discriminated against and denied access to services on the grounds of their serostatus. 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.
What is stigma?
Stigma is a process of devaluation. AIDS is an example of illness as stigma. Stigma is not unique to HIV/AIDS only. 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). When analyzing the roots and results of stigma it is important to demonstrate how both men and women experience stigma and how both these are differently affected by it.
Studies of stigma have shown that the stigma associated with HIV is greater than that of other stigmatised illnesses (Lee, kochman & Sikkema, 2002:309).
Different scholars, academics and authors have tended to differ on gender differences in relation to both men and women. Biologists argue that there is an evolutionary explanation of why men tend to be more sexually promiscuous than women.
Judith Lorber distinguished about ten (10) 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).
The differing attitudes towards the sexual activities of men and women formed a double standard, which has long existed and still applies currently.
Most studies have shown that most patients in therapy, for instance, are women (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. 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).
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. 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. Given the close links between HIV/AIDS related stigma, discrimination and human rights violations, multiple interventions programmes are needed.
Stigma devalues and discredits people, generating shame and insecurity. People living with HIV/AIDS have been stigmatised and discriminated against worldwide since the epidemic began. Women are seen to be the axle around which HIV infection in Southern Africa revolves. 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. 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.
People's constructions and conceptions of gender identity, as well as sexual attitudes and inclinations linked to them, are formed early in life that as adults people take them for granted.
HIV/AIDS remains a highly stigmatized disease among African communities and other communities world-wide. 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.
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. 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 do they differ with those of men.
The interview was carried with a NAPWA (National Association of People Living with HIV/AIDS) activist, whom for the purposes of anonymity I refer to as Nohlanhla. Nohlanhla's fiancée is one of those men who find it difficult to admit their infection for fear for being branded as “ not man enough”. This is a result of what society makes us to believe, that a man who succumbs to sickness is not man enough. 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.
South Africa suffers one of the World's highest HIV infection rates, but people deny the disease because HIV is linked with sex. Those 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.
Methodology of the study
This study utilized qualitative research methods. The data was collected through 6 (six) focus groups discussions and provides a narrative analysis of focus group discussions.
It is for 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 participants had a picture discussion. 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.
Focus groups
The 62 participants were recruited for the focus groups through a community member and a stigma project colleague.
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.
Co-Facilitator
Each focus group lasted between 1 and 2 hours. 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.
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.
Much of the stigma attached to HIV/Aids is that HIV positive women and men got infected due to their promiscuous behaviour. Unemployment among black people, “the sugar daddies” and the socio-economic factors has been cited as factors that makes women more vulnerable or at risk of contracting HIV/AIDS.
The combination of having money and an expensive car tends to put people at a high risk of infection. Men's promiscuous behaviour, dominance and economic advantage is encourages and perpetuate patriarchy leading to the pervasive spread of HIV/AIDS.
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 fuels stigma, as this participant puts it” They'll tell you that HIV/AIDS doesn't exist.
Women are also or forms part of stigmatizing other women and in turn fuels stigmatization.
The effect of income on HIV stigma seems different for both men and women.
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. This gossiping contributes to the stigmatisation of people.
Males are not stigmatised, as this participant rightly put it “Because men have power or physical power, this serves as a threat to those who want to stigmatise men.
Women who become infected may be seen as having been sex workers, promiscuous.
Images of HIV/AIDS in the media- tends to suggest that it is' a gay disease', an American disease to wipe out Africans and a 'woman's disease- these stereotypes fuels stigma and reinforce beliefs (cultural) which are not true.
Most women die from HIV/AIDS, so it's a woman's disease.
Impact of stigma is mediated by gender and its impact is experienced more by women than by men.
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.
This study focused particularly on one South African township, Khayelitsha. This study has revealed that women due to their social or economic status can at times put their health at risk. 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 this woman puts it
” according to culture men are the ones who have power and control”.
Recommendations from participants
The attitudes of health workers is cause for concern-The nurses should be educated on how to educated the public around HIV/AIDS. Support groups should go into the community. In community projects, e.g. Gardening, HIV+ people should form part of community projects- they should be seen as productive people. People hide HIV/AIDS, you'll hear that it is cancer, TB, diabetes that killed so and so. 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 programmes. Families & parents should be a platform where the issues of HIV/AIDS are raised to further reduced stigma.
More and more community workshops are needed. Put more messages about HIV/AIDS stigma on television in programmes like “Asikhulume/Let's talk” on TV, in radio to further educate people about stigma.
We must challenge stigmatising statements such as “People who sleep around deserve what they get or If I got HIV/AIDS I'll kill myself”
The participants in these focus groups were not asked their status. People tend to think of HIV/AIDS as destructive, for them it represents some form of inactivity, exclusion from society.
Tshipinare Marumo
Information & Resources Manager
People Opposing Women Abuse (POWA)
Tel:+27 11 642-4345/6
Fax: +27 11 484-3195
Email: info@powa.co.za |
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