Ending the stigma
of HIV/AIDS - Thoughts for World AIDS Day by Professor
Malegapuru William Makgoba, Vice-Chancellor of the University
of 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
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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