Ending the stigma of HIV/AIDS - Thoughts for World AIDS Day by Professor Malegapuru William Makgoba, Vice-Chancellor of the University of KwaZulu-Natal
On Sunday 1 December 2002, we observe another Worlds' AIDS Day. It is a time to stake stock of our achievements and to reflect upon the responsibilities we still face as individuals, organisations and institutions as a result of the epidemic. In a very direct way, it is the issues of HIV-related stigmatisation and discrimination - the theme of this year's World AIDS Day - that bring home most clearly the intensely human dimension of the HIV/AIDS epidemic.
We do not have to look far to find evidence of the very real pain suffered by those people - both adults and children - who are infected and affected by HIV/AIDS as a result of stigmatisation and discrimination at a variety of levels. A recent study of the effects of HIV/AIDS-related stigma by Save the Children documents the extent of the fear that still characterises the lives of people living with HIV/AIDS, and those of their families.
When asked by a researcher if she had told anyone about her HIV status, one woman living in the deep rural area of Ingwavuma in KwaZulu-Natal said: "& I didn't like to tell the whole family because some of them would end up not loving me the way they used to. Something will change. They'll know after I have been sick and buried that I had such-and-such a disease."(1)
This comment is typical of many of the responses collected and recorded during the research project, which was conducted across several communities in South Africa during the course of 2001. Not only does the comment speak of the intense fear that exists among people living with HIV/AIDS. It also acts as a severe indictment on a society that would permit people to live in a state of tragic disempowerment, inhibition and under the constant threat of the withdrawal of love and support - precisely at a time when such love and support is most needed.
Fear of being identified with the virus has the effect of keeping people from being tested, from discussing prevention, from changing unsafe behaviour and supporting people living with HIV/AIDS. Stigma and discrimination thus threaten the very utilisation and effectiveness of the HIV/AIDS prevention and care efforts that do exist. They also increase the pain and suffering of people living with HIV/AIDS and their families. Prejudiced and stigmatising perceptions also frequently lead to some form of discrimination and a violation of rights, which further hinders the response and increases the negative impact of the epidemic.
Against this backdrop, there are compelling reasons to understand and address stigma and discrimination if we are to successfully challenge the HIV/AIDS epidemic. I have painted a rather bleak picture of the nature of stigma and discrimination exacerbating what is commonly referred to as the HIV/AIDS "crisis" in South Africa. The approach - as collectives and as individuals - that we take to this crisis is very important.
The Chinese use two symbols to represent the English word "crisis". From these two symbols, two other words can be derived: "danger" and "opportunity". So the word "crisis" indicates a risk or threat, but at the same time it also indicates the idea of timing and, importantly, an opportunity.
In pointing to this dual reading of "crisis" I have no wish to underplay the severity of the HIV/AIDS epidemic. The HIV/AIDS epidemic is an emergency and it is one that very obviously threatens human welfare and prosperity throughout large parts of the developing world. Millions of people have become impoverished as a result of HIV/AIDS: Children have lost their parents; families have lost their property; communities have lost their teachers, health workers, business and government leaders; nations have lost their investments in decades of human resource development; and societies have lost untold potential contributions to social, economic, political, cultural and spiritual life. These losses cannot pass by unnoticed or unmourned.
Africa, particularly sub-Saharan Africa, is engulfed by the HIV/AIDS epidemic. Almost all the socio-economic improvements of post-independent Africa are being reversed. Life expectancy, which had risen from the mid-40s to the 70s, has already been reversed in some countries such as Botswana and Zimbabwe. In South Africa, the reversal of mortality trends from the old to the young, particularly young females in their mid-20s and 30s, is a unique phenomenon in biology. The epidemic is indeed raging in post-colonial Africa against a background in which socio-economic conditions have continued to improve over the past 30 years.
However, against the context of socio-economic calamity and the HIV/AIDS epidemic there are opportunities for breakthroughs and innovations. I believe that the HIV/AIDS epidemic in our country has become and will continue to be a force for galvanising the nation, for crystallising our collective wisdom, for we face a common future and destiny. HIV/AIDS cannot be allowed to become a barrier to the much-anticipated African Renaissance.
South Africans themselves are consumed by negative sentiments about their society and therefore devote huge amounts of time, energy and resources digging themselves into their own grave. South African society has largely failed to understand its common destiny and has failed to engage with that destiny. We are all affected by HIV/AIDS and we cannot allow pervasive perceptions that HIV/AIDS is a Black disease to allow a lack of public attention to levels of infection in other groups. This fuels a kind of fatalism and a dangerous false sense of security in groups whose self-perception is that they are less affected.
Like many other sexually transmitted infections, most notably syphilis in 15th and 16th century Europe, HIV/AIDS was first perceived as a disease of "outsiders"(2). Who counted as an outsider - then, as it does now -depended on where you were situated.
We also see this negativity pervading the international arena. As Africans, we have the problem of being lumped together on a continent marked by HIV/AIDS. All over the world, HIV/AIDS is largely associated with Black people and with Africa. And yet, in South Africa, we have a population of 37 million people who are HIV-negative, and yet there is a tendency to ignore the fact that there is an active, vibrant and productive majority in South Africa. They ignore the fact that South Africa has a national programme for dealing with the epidemic that is optimistic and hopeful and is in direct contrast to the gloom-and-doom stories that one reads about all the time. It ignores the co-ordinated strategy that exists and is growing between government, civil society, academia, business and research centres. Developing a vaccine is one facet of South Africa's HIV/AIDS strategy involving education, holistic treatment of HIV/AIDS patients and the promotion of human rights with specific focus on dealing with the issue of stigmatisation and discrimination.
At the World Conference Against Racism in Durban in 2001, UNAIDS Executive Director Peter Piot told his audience that "Solidarity, Knowledge and Hope" make an effective platform for fighting the HIV epidemic. Across the world, he said, successful responses to HIV/AIDS have been built on respect for human rights, promoting the dignity of those affected, and building social solidarity.
I think the combination of knowledge, solidarity and hope are key ingredients to our struggle, a struggle in which all of us can find a role.
KNOWLEDGE
Research has shown that providing accurate and comprehensive information for the public regarding the transmission of HIV reduces the degree of discrimination and stigmatisation that accompanies an HIV-positive diagnosis. In other words, if people understand that the disease is not transmitted through casual contact, levels of fear and animosity are reduced and relations between family members at least are improved. An unidentified man living with HIV/AIDS in Ingwavuma gave researchers the following information:
"When I first knew that I had got this disease," he said, "I had a problem at home. People were afraid of me. But as time went by they got to know about it and that they won't get it just by being with me. Now they've accepted me and this gives me hope in my life.(3)
In addition, people living with HIV/AIDS themselves also need to be better educated about their rights as patients and as people and about how to get help to challenge the discrimination and stigmatisation they face in health care and other settings. They need legal education and access to the justice system to address the violation of their rights in the context of employment and education.
SOLIDARITY
A more enabling environment is necessary to increase the visibility of people with HIV/AIDS and to facilitate the formation of support groups so that discrimination, stigmatisation and denial can be challenged collectively. It is difficult to work alone. All those whose lives are affected by HIV/AIDS should have access to compassion, non-judgemental care, respect, support and assistance. We must all take responsibility for generating a prophetic and positive vision of a society in which general welfare becomes the abiding obligation of public, private and voluntary sectors of society in partnership, where adequate care and appropriate prevention measures will be available for all people in need and where issues of culture, class, gender and race as they relate to HIV/AIDS are confronted in open debate.
HOPE
As the unidentified man from Ingwavuma whom I quoted earlier said: The acceptance by others of his HIV status gave him hope. All of us need hope in order to live. How much more so for those who live with HIV/AIDS? All of us must embark on creative action to embody and proclaim hope, life and healing in the midst of suffering. People living with HIV/AIDS should not necessarily see their diagnosis as an immediate death sentence.
We must hold out hope for a vaccine. We are well placed on this continent to pursue this. South Africa is at the leading edge of HIV vaccine development and TB Drug development innovations. The Centre for AIDS Programme of Research in South Africa, or CAPRISA, which incorporates many partner institutions but is based in KZN at the University's Medical School, has been recently formed with funding from the National Institute of Health in the United States. With a budget of R120 million over the next five years, it will give South African scientists a chance to do research that will have a real impact on the lives of people living with HIV/AIDS.
In addition to the scientific research being conducted into HIV/AIDS, the University is also working on a number of fronts to create an environment in which students and staff with HIV/AIDS are empowered and are involved in the University not as outsiders, but as integral members of the institution.
- The introduction of the office of the AIDS Programme Management has ensured a more holistic approach to the issue of HIV/AIDS on campus, and is leading the development and management of the University-wide Peer Education and Peer Counselling Programmes.
- HIVAN, the Centre for HIV/AIDS Networking, is a key stakeholder in this process and is facilitating a range of cross-sectoral and multidisciplinary interactions in an effort to address the epidemic both on and beyond campus.
- The University clinics offer voluntarily testing and counselling to students and staff on all campuses and this service is being used by increasing numbers of people. Once they have their results, however, students show a reluctance to return for counselling. We believe this is a result of the fear that students have that their status may be revealed. The University is currently seeking funding to implement a programme that will see anti-retroviral drugs administered under extreme control to HIV-positive students, and we believe that this will have a positive impact on the numbers of students returning to the campus clinics.
- The University will be implementing a comprehensive training strategy around HIV/AIDS for staff to be introduced in 2003, and is working towards the thorough integration of HIV/AIDS into the entire University curriculum to ensure that the University produces graduates who are able to function effectively in their personal and professional lives in an environment in which many are affected and infected with HIV/AIDS.
- In general, the University has attempted to integrate the issue of HIV/AIDS into a broader framework of diversity and is currently working, with a range of stakeholders, towards the creation of an environment free from discrimination that will allow people to freely choose to disclose their HIV status.
A multi-faceted approach is the only approach that is likely to address the multi-faceted challenges of HIV/AIDS. Only a response that takes into account the medical aspects of the disease, as well as the human, cultural and ethical and spiritual dimensions of life can offer complete solidarity to its victims and raise the hope that the epidemic can be controlled and turned back.
HIV/AIDS is confronting us all with the necessity of becoming more fully the kind of people and community that answers a call to compassion, to care for the sick, to seek justice and to reach out to the neighbour in need. (4) It is a challenge to all of us to put aside prejudice, narrowness of thought and selfishness, and one to which all South Africans can and should aspire.
(This Editorial is adapted from an address given by Professor Malegapuru William Makgoba at a Diakonia Council of Churches Briefing, held on 25 November 2002).
Picture: Stellenbosch University (www.sun.ac.za)
1. The role of stigma and discrimination in increasing the vulnerability of children and youth infected with and affected by HIV/AIDS. Save the Children Report on Participatory Workshops, December 2001
2. Gilman, S, (1988), Disease and Representation: Images of Illness from Madness to Aids.
3. The Role of stigma and discrimination in increasing the vulnerability of children and youth infected with and affected by HIV/AIDS". Report on Participatory Workshops by Save the Children, 2001.
4. "Aids Brief", USAID
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