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).
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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