Project Description

It is within the context of acknowledging the inadequacy of existing HIV prevention strategies, and recognising the need for effective HIV prevention strategies that this issue of the ALQ explores a variety of HIV prevention realities and challenges. The various articles in this edition examine a range of challenges to HIV prevention, as well as various realities in which HIV prevention occurs. Barriers to HIV prevention, such as stigma, culture, values and norms, the societal context, including the ‘unsafe’ environment for HIV prevention and disclosure; the failure of HIV prevention strategies to cater for the needs of lesbian and gay people, ‘the elderly’, and people living with HIV; as well as the power of language are some of the issues explored in this issue.

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HIV disclosure should be the norm…
Disclosing HIV Status: Prevention versus reality in South Africa
In many respects the approach to HIV and AIDS has been to repeat the same messages and
promote the same strategies with the expectation of achieving different results. Given the extent
of the infection rates and the impact on communities, it is clear that this approach has not worked
and that new solutions are needed. One must, however, always be mindful of the consequences,
especially the unintended consequences, which may arise from promoting alternative ways of
dealing with the disease.
INTRODUCTION
One way to respond to the situation may
be to place more emphasis on the need to
disclose one’s HIV status, as a means to
educate and, thereby, prevent the further
spread of the disease. There are many reasons
that can be given to promote HIV disclosure,
but it is also important to look at the realities
of the South African situation.
In an ideal world, HIV would not exist and
there would be no need to discuss these
issues. In an ideal world, people would also
have committed monogamous relationships,
characterised by trust and communication.
Given that we do not live in the ideal world
and HIV is a reality, in a ‘best case scenario’,
it would be ‘the norm’ for everyone to know
their HIV status and for people to be in the
position to safely disclose their HIV status.
Such openness would have a number of
benefits, not least that knowledge of the
disease and information could lead to
prevention of the disease spreading.
Unfortunately, in South Africa we have
neither the ideal, nor even the ‘best case
scenario’. There are very real problems
associated with living with HIV and
disclosing one’s HIV status.
ASSESSING THE SITUATION
When faced with such dilemmas, it is
useful to remind ourselves of the principles
that can be of assistance in coming up with
solutions to the challenges facing South
Africa. In responding to the situation, it is
imperative that human dignity is preserved
and respected at all times, while at the same
time guaranteeing the rights of everyone.1 It
is important to remember that there is a
human face to all of the statistics, and that
people who are affected by the disease are
infinitely valuable. Whatever solutions are
explored, they need to be done in accordance
with the recognition of the humanity and
value of each person. At the same time, one
also needs to bear in mind that people live in
a community and that the common good also
needs to be served. As so often is the case,
one needs to look at balancing competing
human rights, and the issue of HIV disclosure
is no different. When considering whether or
not to disclose one’s HIV status, the right to
Felicity Harrison
aLQ -November 2006 1
A Publication of the AIDS Legal Network November 2006
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Tel: +27 21 447-8435
Fax: +27 21 447-9946
E-mail: alncpt@aln.org.za
Website: www.aln.org.za
In this issue: 1 HIV disclosure should be the norm… Disclosing HIV Status:
Prevention versus reality in South Africa 2 Editorial 6 It is all about
behaviour change… Barriers to effective HIV prevention 10 There is no
mention of sexual minorities… HIV prevention challenges for lesbian and
gay people in South Africa 13 HIV prevention and treatment: The power of
positive language 18 ‘Those’ elderly people – HIV prevention messages miss
people over 50 22 I am happy now… PMTCT in South Africa: A personal
reflection 24 Feedback 27 Influences that taint HIV prevention messaging
31 What Prevents Prevention? An overview of the sociological and gender
context of HIV prevention in Southern Africa 35 Provincial view 38 Regional
view 45 Comment 48 Gender Violence & HIV and AIDS
aLQ – November 2006 2 Editorial
I
…to be effective, HIV prevention programmes must
address the context in which people live their lives…
[UNAIDS 2005]
It is within the context of acknowledging the
inadequacy of existing HIV prevention strategies, and
recognising the need for effective HIV prevention
strategies that this issue of the ALQ explores a variety of
HIV prevention realities and challenges. The various
articles in this edition examine a range of challenges to
HIV prevention, as well as various realities in which HIV
prevention occurs. Barriers to HIV prevention, such as
stigma, culture, values and norms, the societal context,
including the ‘unsafe’ environment for HIV prevention and
disclosure; the failure of HIV prevention strategies to cater
for the needs of lesbian and gay people, ‘the elderly’, and
people living with HIV; as well as the power of language
are some of the issues explored in this issue. The integral
features included in this edition of the ALQ look at HIV
prevention challenges in Kabokweni, Mpumalanga;
introduce various behavioural change communication
strategies employed in the SADC region; and ‘make a
point’ about fertility desires of people living with HIV. This
issue also includes a ‘feedback’ on HIV prevention
challenges, debates and insights from the provinces.
In this edition, Felicity Harrison examines the
potential of HIV disclosure as one of the HIV prevention
strategies. Exploring the pros and cons of promoting HIV
disclosure, she argues that even though HIV disclosure
should be the norm and ‘best case scenario’ for effective
HIV prevention, reality does not provide an environment in
which people can ‘safely’ disclose their HIV status.
Recognising the apparent failure of HIV prevention,
Johanna Kehler raises the question as to whether or not
HIV prevention strategies and messages coincide with the
societal context in which prevention occurs. She
examines various barriers to HIV prevention and argues
that as long as HIV prevention strategies and messages
fail to take into account people’s lives and are not based
within the context of behavioural change, stigma will
continue to be the main barrier to HIV prevention.
The accessibility of HIV prevention for lesbian and gay
people is discussed by Fikile Vilakazi. Analysing lesbian
and gay people’s prevention needs and experiences in
accessing prevention methods, she argues that existing
HIV prevention strategies not only exclude lesbian and
gay people, due to the failure to encompass the diversity
of sexual behaviour, but only ensure that lesbian and gay
people remain to be the ‘others’, who are on the fringes
and margins of society.
Acknowledging the ‘power of language’, Derrick Fine
examines how language, and being seen as ‘different’,
impacts on attitudes and actions around HIV prevention
and treatment. He analyses the change from the
‘stigmatising stain of language’ and its influence on
HIV and AIDS communication in South Africa to ‘the
power of positive language’ and argues that using
positive, affirming language around HIV is not about
political correctness, but about shifting attitudes, beliefs
and policies.
In view of growing HIV infection rates amongst ‘the
elderly’, Emma Harvey explores whether or not HIV
prevention strategies are reaching people over 50.
Looking at the considerations given to people over 50 in
HIV prevention and exploring the existing stereotypes and
myths about ‘the elderly’, she argues that people over 50
remain largely invisible and ignored in HIV prevention
strategies, due to age-related stigma and discrimination.
The need for adequate and accessible prevention of
mother-to-child transmission programmes is addressed
by Busisiwe Maqungo. Reflecting on personal
experiences with both the lack of, and the availability to,
PMTCT programmes, she argues that PMTCT is an
imperative for realising the constitutionally guaranteed
right to life.
The need to address influences that
taint HIV prevention messaging is highlighted by
Mduduzi Mthembu. Looking at gender, gender violence,
culture and norms, as well as stigma and prejudices as
some of the factors influencing the ‘success’ of HIV
prevention messaging, he argues that effective HIV
prevention strategies need to cater for everyone and
promote values of unity, instead of diversity.
Suzanne Leclerc-Madlala analyses the sociological
and gender context of HIV prevention in Southern Africa.
Identifying various influences contributing to this context,
she discusses custom and tradition, historic processes
and modern trends; and argues that the sociological and
gender work required to make a real impact on HIV and
AIDS in the region is nothing short of substantial.
The challenges facing HIV prevention programmes in
Kabokweni, Mpumalanga are introduced by Sipho
Fakude. Discussing some of the realities and experiences
Editorial
continued on page 4
I
privacy needs to be weighed up against the obligation not to harm
others, nor to infringe on the rights of others.
DISCLOSING HIV STATUS
In a ‘best case scenario’ there would be an enabling, supportive
environment in which people with HIV could safely disclose their
status. It is known that where such conditions exist, disclosing one’s HIV
status can be beneficial to both the person living with HIV, their families
and the community at large. The operative words here are ‘can be’.
In the ‘best case scenario’ it would be ‘the norm’ for people to
disclose their HIV status. But such a scenario presupposes a number of
things. It assumes that a safe environment exists in which people can
make such a disclosure. Following from this is the notion that there is
a supportive family and social context within which a person would be
in the position to get the medical, emotional, social and spiritual
assistance needed in order to deal with the challenges of living with
HIV. These things, however, are noticeably absent to many in South
Africa, where inequalities, imbalances, stigma and discrimination exist
and all impact on the decision of a person whether or not to disclose
her or his HIV status.
Because of the complexities of the situation, it is important to look
at individual circumstances when assessing if one should disclose
one’s HIV status or not. One needs to weigh up the positive benefits of
disclosing against the possible negative consequences of doing so.
In the case for disclosing:
What Liziwe is saying is that her community knows that she [has]
HIV, because she disclosed to them, but they don’t believe. And
they knew how she was before she was sick, but because she is
well they don’t believe any more. She doesn’t understand why
someone with HIV must have horns or … look different.2
In a study3 looking at the impact of HIV disclosure, one of the
participants gave the following as a reason for disclosing her HIV
status: ‘I wanted him to be careful about HIV and get tested…’ 4. Other
participants indicated that they disclosed their HIV status when they
became increasingly ill and family members, who are also their caregivers,
needed to know about their status in order to care for them, and
where appropriate, to take measures to prevent their risks of becoming
infected with HIV. In other instances, people felt the need to disclose
their HIV status, because the people around them did not know very
much about the disease or they were misinformed about HIV and
AIDS. There was a desire to educate the people around this issue.
In looking at HIV prevention strategies, it is important to look at
the positive benefits that disclosing one’s HIV status can have. If
someone discloses to their household that they are infected with HIV,
it expands awareness of the disease to others, who are then in the
position to take the necessary measures to protect themselves from
being infected. Information about the disease and knowledge are vital
to HIV prevention. There is a conspiracy of
silence in South Africa, where ignorance and
lack of understanding are the source of much
prejudice and discrimination. While
disclosing one’s HIV status is not the panacea
for these maladies, it is an important step to
assisting in finding their solutions.
FACING REALITIES
As was noted above, the situation in South
Africa is far from the ideal. People who
disclose their HIV status are opening
themselves up for ridicule, rejection,
ostracisation and alienation from their
families and from their communities.
It is assumed by many that if someone is
infected with HIV that that person is
promiscuous and that somehow contracting
HIV is a ‘just punishment’ for their
behaviour. Women in particular face moral
judgement, which is coupled with gender and
cultural perceptions that see women being
blamed for not only contracting the disease,
but also for spreading it to others. In addition,
there are some people or communities, who
blame people living with HIV for a host of
other social misfortunes. In such a setting, it
is understandable why people would choose
not to disclose their HIV status.
This vulnerability has at times been
compounded by the rejection and ostracisation
of people within their families and
households. Significant relationships have
aLQ – November 2006 3
HIV disclosure should be the norm…
…there is a
conspiracy of silence
in South Africa,
where ignorance and
lack of understanding
are the source of
much prejudice and
discrimination…
from a service provider’s perspective, he argues that for
HIV prevention to be successful, personal attitudes and
behaviours need to change before HIV prevention
strategies and programmes can be rolled-out
into communities.
Behaviour change communication strategies, as a
means to help young people ‘avoid HIV and AIDS’, are
introduced by Kent Klindera. Analysing the successes
and obstacles of various strategies and programmes in
the SADC region, aiming at behaviour change amongst
young people, he argues that the ‘key to success’
in effective youth specific behavioural change
communication strategies lies in multi-faceted
programmes with consistent messaging that involve
young people.
Discussing fertility desires and sexual and
reproductive health needs of people living with HIV,
Dorothy Odhiambo is ‘making a point’ about the lack of
considerations given to these desires and needs at policy
level, programme design and service provision. Exploring
some of the obstacles experienced in accessing services,
she argues that it is of utmost importance for policies to
be explicit about, and inclusive of, sexual and
reproductive health rights of people living with HIV, so as
to prevent the violation of rights.
Irrespective of which one of the many HIV prevention
realities and challenges have been examined, there seems
to be the commonly raised question as to why HIV
prevention does not seem to work, does not seem to
prevent new HIV infections, and does not seem to protect
people, who are vulnerable and at risk, of HIV infection.
While the answers may vary in approaches and ‘targets’,
common is a call for ‘change’ towards effective
prevention strategies and programmes, which are, indeed,
responding to people’s prevention needs and which are
applicable to the lives of people in need of HIV prevention.
Some may argue that HIV prevention messages need
to ‘change’, so as to cater for the needs of a specific
‘target group’ and/or that the ‘target group’ need to
‘change’ so that HIV prevention messages can work. Yet,
others may argue that effective HIV prevention strategies
and programmes are about ‘change’ – not ‘change’ in
‘target’ and/or ‘message’, but ‘change’ in the
environment, internal and external, in which HIV
prevention occurs; ‘change’ in attitudes and ‘mindsets’;
and ‘change’ in behaviour. Whatever the preferred ‘target
of change’, the common challenge seems to be the
individual and collective ‘reluctance and resistance to
change’ – based on, justified by, and excused with, the
well recognised ‘barriers’ of culture, religion, value, norm
and belief systems and ‘that’s the way it is’, leading to
stigma and its subsequent discrimination.
If we are to agree that there is a dire need for ‘change’
towards effective HIV prevention, then there is a need to
acknowledge that HIV prevention strategies and
programmes can, and only will be, effective as and when
‘targeted’ at people. Not, because people are of a certain
age, profession, mobility and/or sexual orientation, but
because people are sexual beings. Only as and when we
understand the ‘target group’ to be people, who are
sexual beings, and who live lives filled with diverse
contexts, desires and needs, will we be in the position to
understand prevention needs and begin to develop
and implement HIV prevention strategies and
programmes that are responsive to the context in which
prevention occurs.
So, if we are to ‘remove the barriers’ to HIV
prevention, so as to ensure that HIV prevention is
accessible, available and beneficial to everyone, and that
HIV prevention ‘addresses the context in which people
live their lives’, then there is a need to ‘change’ and
‘change’ then seems imperative to HIV prevention. A
need to ‘change’ existing concepts of ‘prevention needs’
and perceptions of ‘how people live their lives’; a need to
‘change’ understandings of ‘risky behaviour’ and ‘high
risk groups’; and a need to ‘change the unsafe
environment’, filled with stigma, marginalisation and
exclusion of ‘the other’, into an ‘enabling environment’
of inclusion and respect of ‘the other’.
Besides a need to ‘change the external
environment’, there is an equally dire need to ‘change
the internal environment’, the ‘people’, who sustain and
maintain the ‘external’; a need to ‘change us’, as people
who create ‘the other’ and are part of ‘the other’; as
people, who ‘target high risk groups’ and ‘address high
risk behaviour’, while being at ‘high risk’ through
engaging in ‘high risk behaviour’.
Only as and when ‘change happens’ at both levels,
will HIV prevention strategies and programmes finally be
in the position to offer ‘real’ options of prevention. Thus,
until we ‘change the barriers’ preventing prevention,
‘change people and people’s lives’ upholding the very
same ‘barriers’, and ‘change us’, HIV prevention efforts
will continue to fail, remain ‘meaningless’ and provide no
real means of preventing the risk of HIV infections –
neither for ‘the other’, nor for ‘us’…
JOHANNA KEHLER
4 aLQ – November 2006 Editorial
continued from page 2
F
been terminated as a result of disclosures made about HIV status, and
this has resulted in some instances of people infected with HIV being
kicked out of their homes. Others have experienced loss of emotional
and financial support and/or verbal and physical abuse.
In addition to this is the fear of revealing one’s HIV status for fear
of the implications that this may have on one’s job. Fears range from
being overlooked for promotion to being fired: ‘people fear that if they
come out, they will be ostracised, overlooked for promotion and their
jobs may be at threat’ and ‘when other workers see this happening it
heightens their own fear’ .5
Community and individual perceptions are often shaped by a host
of misunderstandings coupled with gender, cultural and moral
judgements, and a general lack of understanding of HIV and AIDS. In
an environment, far from HIV disclosure leading to education about,
and prevention of, the disease disclosing one’s HIV status can place
people in an even more vulnerable position than they already are.
LOOKING FOR A WAY FORWARD
In seeking solutions to preventing the spread of HIV and AIDS,
promoting HIV disclosure should be ‘the norm’. In such a situation,
disclosing one’s HIV status would increase awareness of the disease,
lead to support for the person with HIV, and lead others to take
preventative measures so they themselves would not become infected.
The sad reality is that the experience of many people living with
HIV is one of ostracisation, alienation and discrimination. What is
needed is an enabling environment in which people feel as if they can
come out with their HIV status, without increasing their vulnerability.
In the present situation, when deciding whether or not to reveal one’s
HIV status, people have the task of weighing up the consequences of
disclosing against those of not disclosing – in some cases it amounts
choosing the better of two bad situations.
In the South African context, social realities and a host of complex
issues serve to restrict the ability of many people to make decisions
about disclosing their HIV status. While encouraging people to
disclose their HIV status to their families and significant people in
their lives, it is always important to take into account their
circumstances and the possible consequences
that may arise.
To change the situation, caregivers,
counsellors, educators, healthcare
professionals, churches and communities
need to strive to create loving and supportive
environments where people can feel safe and
secure when they disclose their HIV status.
The genuineness of our convictions
about supporting HIV positive people
and creating a better society must be
measured by our willingness to give the
necessary support. Those who are in a
position to help, and who do not,
cannot escape their responsibility. No
person should feel that they must face
HIV alone.6
FOOTNOTES:
1. United States Conference of Catholic Bishops. 1989. ‘Called to
Compassion and Responsibility: A Response to the HIV/AIDS Crisis’,
November 1989. (www.usccb.org/sdwp/international/ctoresp.htm)
2. Almeleh, C. 2006. ‘A Qualitative Study into the Impact of HIV
Disease Progression on Initial HIV-Serostatus Disclosure to Significant
Others’. Paper presented at the 2006 International AIDS Conference,
Toronto, Canada, 11 – 18 August 2006.
3. Ibid.
4. Ibid.
5. Dickenson, as quoted in ‘Stigma keeps South Africans from AIDS
drugs’, BBC, 21 June 2002.
(http://news.bbc.co.uk/2/hi/africa/2057835.stm)
6. Adapted from the Irish Bishops’ Conference, ‘Statement on Civil Law
and the Right to Life’, 21 July 1995.
aLQ – November 2006 5
HIV disclosure should be the norm…
Felicity Harrison is the Researcher
at the Southern African Catholic
Bishops’ Conference Parliamentary
Liaison Office. For more information
and/or comments, please contact
her on +27 21 461 1417 or at
felicity@cplo.org.za.
…people have the task of
weighing up the consequences of
disclosing against those of not
disclosing – in some cases it
amounts choosing the better of
two bad situations…
HIV prevention is proclaimed to be one of the
main strategic areas in the response to the HIV
and AIDS pandemics. Yet, there are estimates of
1000 new infections per day.1 Statistics2 clearly
indicate that the ‘ABC’ prevention strategy is
failing, especially in Sub-Saharan Africa. Yet,
HIV prevention strategies and messages seem
to continue to rely on the Abstain (until
marriage), Be faithful (to one faithful and/or
uninfected partner) and Condomise (when
engaging in risky behaviour) model of HIV
prevention. Stigma and subsequent
discrimination has been widely recognised as
the barrier to HIV prevention efforts. Yet, very
little has been done to adequately
address stigma.
It is within this context that this article will
explore the question as to whether or not current
HIV prevention strategies and messages
respond to the societal context in which people
access and participate in HIV prevention.
HIV PREVENTION REALITY
The failure of the ‘ABC message’ to
prevent HIV infection is evident. Latest
statistics indicate that despite numerous
efforts to prevent new HIV infections,
infection rates are on the increase. According
to statistics3, there are an estimated 6 million
people in South Africa living with HIV and
AIDS, with an estimated adult prevalence rate
of 25%. In addition, the data highlights that
women and girl children are the ones
adversely impacted and affected by failing
HIV prevention efforts. Of all people living
with HIV, the majority are females; the
prevalence rate amongst women attending
antenatal clinics is 30.2%; and of all the ones
caring for people living with HIV and AIDS,
75% are women and girl children.4 Similarly,
HIV prevention campaigns promoting
condom use are failing to prevent HIV
infections, as indicated by the rising numbers of people living with
HIV and AIDS.
The various reasons for the failure of ABC-based HIV prevention
messages are well documented. In addition to not taking into account
the societal context in which HIV prevention occurs, including
existing gendered inequalities and prevailing stigma, HIV prevention
messages will continue to fail people at risk of HIV infection, namely
people who are sexually active, because the messages relayed are,
more often than not, prescriptive, judgemental, value-based and often
confusing. Thus, instead of offering options for preventing HIV
infections, current HIV prevention messages seem to ‘prescribe’ who
is at risk of HIV infection, and when HIV infection is likely to occur.
A woman who has remained abstinent until marriage and is
faithful to her husband, for example, but whose husband is either
HIV-infected or is sexually active outside the marriage, is in fact
at high personal risk of HIV infection herself, notwithstanding
her own monogamy. [Cohen, 2004:12]
This is further evidenced in data5 indicating that in Sub-Saharan
Africa, the majority of new HIV infections are found in women
within marriage and/or long-term relationships. There is plenty
evidence that, as argued by [Sindig, 2005:38]:
…promoting abstinence or faithfulness as the only way to prevent
HIV transmission will leave millions of people without the
ability to protect themselves from infection.
And yet, there are limited, if any, HIV prevention strategies and
programmes, which promote an individual’s right to make informed
choices, including sexual choices; which provide ‘factual’, as
compared to ‘moral’ information on HIV prevention options; which
coincide with the external and internal environment, the societal context,
in which HIV prevention ‘choices’ are made; and which are based
within a human rights framework of equality, non-discrimination, human
dignity and equal enjoyment of all rights and freedoms.
HIV PREVENTION CHALLENGES
To be effective, HIV prevention programmes must address the
context in which people live their lives. [UNAIDS, 2005:9]
The gendered societal context, gendered prescriptions of
behaviour, including sexual behaviour, mostly value-based and
judgemental messages, core beliefs and prevailing discriminatory
attitudes and beliefs are but some of the underlying factors not only
fuelling the HIV and AIDS pandemics, but also rendering most of the
existing HIV prevention efforts meaningless.
The gendered prescription of behaviour, including sexual
behaviour, largely defines ‘who’, in a relationship, has the ‘power’ to
make decisions about the conditions of sex, including whether or not 6 aLQ – November 2006 It is all about behaviour change…
Barriers to effective HIV prevention
It is all about
behaviour change…
Barriers to effective HIV prevention
Johanna Kehler
W
to prevent the risk of HIV transmission. More often than not, it is the
very same societal context, and not the individual, who ‘decides’ who
is in the position to access, participate in and benefit from available
HIV prevention methods. Thus, within the gendered context of society,
women seem to be ‘pre-defined’ as the ones least in the position to
partake in any form of HIV prevention.
As mentioned above, HIV prevention messages will continue to
fail, since most messaging is value-based and often judgemental in its
approach. Since the ABC-based messaging is, arguably, founded
within a societal accepted framework of ‘right/wrong’ behaviour and
‘good/bad’ choices, especially pertaining to sexual behaviour and
choices, these messages not only convey limited and biased information,
but also seem to justify the limitation and subsequent judgement of
individual choices – especially if they are perceived to be outside the
‘norm’ of what is ‘accepted sexual behaviour’. And since individual
choices are in fact not part of HIV prevention messages, individual
choices are often used to ‘justify’ the violation of the individual, who
made a choice.
It is within the context of HIV prevention efforts that the
constitutional and human rights framework seems to have become a
‘challenge’, in that provisions, based on equality, non-discrimination,
dignity and freedom of choice, are in place, and yet, reality of HIV
prevention remains to be mostly characterised by inequality,
disrespect, denied and/or limited freedom to choose and the
subsequent violation of rights. While there are various arguments as to
why rights do not seem to coincide with the lived realities of most
people, including a general lack of knowledge and/or understanding of
rights, as well as a lack of knowledge, skills and often resources to
address the violation of rights, it is ultimately the gendered context of
society and the prevailing stigma that defines the extent to which rights
can become a reality for everyone.
In addition, prevailing discriminatory attitudes, beliefs and
practices are not only manifested in core beliefs and values, but also
justified by the very same, leading, amongst other things, to ‘society’
largely accepting and even condoning the occurrence of stigma and
subsequent discrimination, especially based on one’s sex, gender,
sexual orientation and/or HIV status. While the persistence of stigma
and subsequent discrimination denies and/or limits an individual’s
access to, control over, and benefit from all available resources, its
impact seems to be compounded in the context of available HIV
prevention information and services.
Recognising these consistent challenges to effective HIV
prevention, the question could be raised as to whether or not existing
prevention approaches, strategies and programmes do, indeed,
…take into account the growing linkages between AIDS and
factors that put people at greater risk of HIV infection, such as
poverty, gender inequality, and social
marginalisation of specific populations.
[UNAIDS, 2005:7]
It could be argued that there are quite a
number of programmes addressing poverty
(by aiming at poverty alleviation and creating
opportunities for income-generation);
addressing gender equality (through ‘the
empowerment of women’, as well as by
re-visiting issues of ‘masculinity’); and
programmes addressing not only the social
marginalisation of specific social groups, but
also catering for the specific needs of
marginalised groups, such as sex workers,
lesbian and gay people, and prisoners. And
yet, the status quo seems to largely continue
in that poverty and gender inequality place
people, especially women and girl children, at
greater risk of HIV infection, and that
marginalised groups, such as sex workers,
and lesbian and gay people, are further
marginalised and often excluded from available
HIV prevention information and services.
The failure to effectively address the
underlying factors of the HIV and AIDS
pandemics, including the core beliefs leading
to stigma and subsequent discrimination
based on, and in the context of HIV, is as
much a factor for the limited impact of HIV
prevention strategies and programmes, as the
seemingly societal reluctance to change
behavioural patterns and attitudes.
STIGMA AS THE BARRIER TO
HIV PREVENTION
HIV stigma and the resulting actual or
feared discrimination have proven to be
perhaps the most difficult obstacles to
effective HIV prevention. [UNAIDS,
2005:10]
While stigma and subsequent
discrimination based on, and in the context
of, HIV and AIDS has been widely
recognised ‘as the single greatest challenge
to slowing the spread of the disease’ [ICRW,
2002], very few responses have been
developed and implemented to address HIVrelated
stigma. One of the reasons for this
slow response, as argued by Ogden and
Nyblade [2005:7] is that stigma is believed to
be ‘too cultural, too context-specific, and too
sensitive to be addressed meaningfully’.
HIV-related stigma is commonly defined
as ‘a complex concept that refers to prejudice,
discounting, discrediting and discrimination’6
against people actually living with, or are aLQ – November 2006 7
…messages relayed are, more
often than not, prescriptive,
judgemental, value-based and
often confusing…
It is all about behaviour change…
Barriers to effective HIV prevention
Aperceived to live with, HIV and AIDS, as well
as against their partners, friends, and families.
Research also highlights stigma as a social
process producing and reproducing relations
of power and control.7
Stigma is primarily based on core beliefs,
values and norms often leading to, and
justifying, moral judgements, as well as lack
of knowledge, actual and/or perceived,
leading to fear and misconceptions about the
‘unknown’. HIV-related stigma appears to be
an integral part of the HIV and AIDS
pandemics, in that it accompanies and fuels
the pandemic at the same time.8
According to UNAIDS [2005:10], HIVrelated
stigma specifically
…stems from fear, as well as
associations of AIDS with sex, disease
and death, and with behaviours that
may be illegal, forbidden or taboo, such
as pre-and extramarital sex, sex work,
sex between men, and injecting drug
use…[and] also stems from lack of
awareness and knowledge about HIV.
Such stigma can fuel the urge to make
scapegoats of, and blame and punish,
certain people or groups.
HIV-related stigma is expressed in various
ways, including through ostracising, rejecting
and avoiding people living with HIV or
AIDS; discriminating against people living
with, and/or perceived to live with, HIV;
mandatory HIV testing of individuals
perceived to be at ‘high risk’, without
informed consent or assured confidentiality;
and violence against people who are infected,
actual and/or perceived, with HIV, or against
people who are perceived to belong to a ‘high risk group’ for
HIV infection.9
While stigma ‘taps into existing prejudices and patterns of
exclusions and further marginalises people, who might already be
more vulnerable to HIV infection’, it also ‘prompts people to act in
ways that directly harm others and deny them services or entitlements’
[UNAIDS, 2005:10]. Thus, stigma leads to actions, which are
discriminatory, and often further marginalise and exclude already
vulnerable and marginalised individuals and/or groups of individuals.
In reality, people’s choices are limited, due to stigma and the fear of
subsequent discrimination in that many people ‘choose’ not to negotiate
safer sex, not to access available prevention methods, not to test for HIV,
not to disclose their HIV status, and not to seek available treatment,
support and care – due to fear of negative consequences. This seems to
indicate, amongst other things, that it is not the availability of information
and services alone that determines whether or not information and
services are accessed, but instead it is the level of prevailing stigma and
fear of subsequent discrimination and violation of rights that defines
people’s ‘choice’ not to access information and services, even when they
are available.
Recognising stigma and the subsequent discrimination as the
obstacle to HIV prevention efforts, the question arises as to how HIV
prevention efforts can be scaled up effectively, so that people are
‘empowered’ and in the position to make informed choices about
HIV prevention.
EFFECTIVE HIV PREVENTION
Effective HIV prevention strategies and programmes require not
only a holistic, multi-faceted and human-rights based approach to HIV
prevention, but also
…requires a strong national policy framework that encourages
safer behaviours, reduces vulnerability, maximises the
accessibility and effectiveness of HIV prevention services,
promoted gender equality and women’s empowerment, and
reduces stigma and discrimination. [UNAIDS, 2006:145]
In order to be in the position to develop and implement effective
HIV prevention strategies and programmes, the societal context, in
which HIV prevention occurs, needs, arguably, to be challenged and
transformed, so as to create an environment, which is ‘safe’ and allows
everyone to equally access, participate and benefit from HIV
prevention information and services. Challenging and transforming the
societal context includes not only challenging the underlying factors
fuelling the pandemics, such as gendered inequalities, imbalances and
injustices, as well as the discriminatory attitudes, beliefs and practices,
but also challenging the core beliefs perpetuating the status quo and
justifying actions, which stigmatise people and violate their
fundamental human rights.
Effective HIV prevention strategies and programmes also imply
that fundamental rights and freedoms become a reality for everyone,
through enhanced knowledge and/or understanding of rights, as well as
enhanced knowledge, skills and resources to address the violation of
rights.
For HIV prevention strategies to be effective, as argued by
Sindig [2005:40],
…we must recognise the complexity of sexual relations, which
embrace every facet of our lives, including issues of culture, 8 aLQ – November 2006
…stigma is
expressed in various
ways, including …
mandatory HIV
testing of individuals
perceived to be at
‘high risk’, without
informed consent
or assured
confidentiality…
It is all about behaviour change…
Barriers to effective HIV prevention
R
tradition, power and status. We must acknowledge the unequal
power relationships between men and women…and we must
design interventions that provide realistic choices. Above all, we
must resist efforts to impose a particular morality on individuals.
We must respect the individual and find ways of giving people
realistic and effective options.
In addition, it is argued that there is a dire need to develop HIV
prevention messages, which are non-prescriptive, non-judgemental,
non-biased and non directive, as well as rights-based, so as to ensure
that HIV prevention is based on an individual’s ‘ability’ to make an
informed choice, to do so without fear of judgement, discrimination
and/or abuse, as well as based on the protection, promotion and respect
of an individual’s right to make informed choices about HIV
prevention, irrespective of one’s sex, gender, sexuality and/or HIV
status. This change in HIV prevention messaging is an integral part to
addressing the stigma that hinders effective HIV prevention, since, as
argued by Ogden & Nyblade [2005:39], the ‘content of HIV and AIDS
information, the style and delivery of messages also potentially creates
and perpetuates stigma’.
And finally, it is argued that the foundation for effective HIV
prevention strategies and programmes lies within both individual
change (internal environment) and structural change (external
environment). Only as and when both the internal and external
environments, which not only perpetuate stigma and the subsequent
discrimination based on, and in the context of, HIV and AIDS, but also
justify its perpetuation, are addressed, challenged and transformed, can
HIV prevention strategies be effective, accessible and, thus, beneficial
to people most vulnerable to HIV infection.
This argument is equally based on the acknowledgment that even
though ‘power relations that foster inequality are structural, they are
perpetuated by individuals’ [Ogden & Nyblade, 2005:38], as it is on
the recognition that
…stigma cannot be reduced without changing the behaviour of
those stigmatising others. Preventing HIV transmission in
healthcare settings cannot be accomplished without changing the
behaviour of healthcare workers. Maternal-to-child transmission
cannot be stopped without ensuring the compliance behaviour of
mothers in taking the therapy in a timely manner. [AED, 2003]
Thus, effective HIV prevention must be based within the context of
behavioural change at the individual level, as well as the societal level.
It is as much about behavioural change that ‘empowers’ the individual
to make informed choices about HIV prevention, as it is about
behavioural change so as for society to ‘allow’ the individual to make
informed choices about HIV prevention. And while behavioural
change is not a ‘quick intervention’, but instead might take quite a long
time, it is certainly ‘high time’ to deliver and to begin developing and
implementing HIV prevention strategies and programmes that carry
the potential to prevent the risk of HIV
infection for everyone equally, irrespective of
one’s sex, gender and/or sexual orientation.
REFERENCE
Academy for Educational Development
(AED)2003. AIDS in Africa. (www.aed.org/
HIVAIDS/International/upload/03-0821%
20AIDS%20in%20Africa3.pdf).
Cohen, S. 2004. ‘Promoting the ‘B’ in ABC: Its
value and limitations in fostering reproductive
health’. In: The Guttmacher Report on Public
Policy, October 2004, pp11-13.
International Center for Research on Women
(ICRW). 2002. Addressing HIV-related Stigma
and Resulting Discrimination in Africa: A threecountry
study in Ethiopia, Tanzania and Zambia.
ICRW Information Bulletin, March 2002.
(www.icrw.org/docs/Stigma_Africa_InfoBulletin
_302.pdf)
Ogden, J. & Nyblade, L. 2005. Common at its
core: HIV-related stigma across contexts.
International Center for Research on Women.
Washington: USA.
Sindig, S. 2005. ‘Does ‘CNN’ (Condoms,
Needles and Negotiation) Work Better Than
‘ABC” (Abstinence, Being Faithful and Condom
Use) in Attacking the AIDS Epidemic?’ In:
International Family Planning Perspectives, Vol
31, No 1, pp38-40.
UNAIDS. 2005. AIDS Epidemic Update:
December 2005.
UNAIDS. 2006. 2006 report on the Global AIDS
Epidemic.
FOOTNOTES:
1. Actuarial Society of South Africa.
2. The State of the World Population Report 2005, Chapter Four.
3. UNAIDS. AIDS Epidemic Update: December 2005. Department of
Health. 2005.
4. UNAIDS. AIDS Epidemic Update: December 2005. Department of
Health. 2005 National HIV & Syphilis Antenatal Sero-Prevalence
Survey in South Africa.
5. The State of the World Population Report 2005, Chapter Four.
6. Herek, G. 1999. ‘AIDS and Stigma’. In: American Behavioural
Scientist, 42:1102-1112. See also Patient, D. & Orr, N. 2005. ‘Stigma:
The extreme end of a discrimination continuum’. In: ALQ, June Edition,
pp1-9.
7. Parker, R. & Aggleton, P. 2003. ‘HIV and AIDS-related Stigma and
Discrimination: A conceptual framework and implications for action’. In:
Social Science & Medicine, 57(1), pp15-24.
8. See also Ogden & Nyblade 2005.
9. Herek, G. 1999. ‘AIDS and Stigma’. In: American Behavioural
Scientist, 42:1102-1112. See also Centre for AIDS Prevention Studies.
2006. How does stigma affect HIV prevention and treatment?
(www.caps.ucsf.edu/pubs/FS/stigma.php)
aLQ – November 2006 9
Johanna Kehler is the National Director
at the AIDS Legal Network (ALN). For
further information and/or comments,
please contact her on +27 21 447 8435 or
at Johanna@aln.org.za.
…it is certainly ‘high time’ to
deliver … programmes that carry
the potential to prevent the
risk of HIV infection for
everyone equally…
It is all about behaviour change…
Barriers to effective HIV prevention
L
In December 2005, lesbian and gay people
adopted an HIV and AIDS Declaration in
Abuja, Nigeria that seeks to challenge heads
of states and health ministries in different
countries to address the HIV prevention needs
of lesbian and gay people globally. One of the
things the Declaration stated is that:
African countries are experiencing a
high HIV seroprevalence and a high
burden of STIs. As same gender loving
people, MSM, and WSW, we are
exposed to higher levels of stigma and
discrimination and thus are more
vulnerable to infections. We need
qualitative and quantitative research
into the factors that place us at risk to
STIs and HIV.
We need education and training for
professionals in order to adequately
attend to these. We are frustrated by the
huge absence of appropriate STI and
HIV transmission and prevention
materials specifically geared toward us
in our countries. We want to engage in
respectful and loving safer sex practices
and therefore demand adequate
provision of appropriate prevention
materials. We want target-specific
pamphlets, dental dams, water-based
lubricants, appropriate condoms and
gloves. We demand access to STI and
HIV treatment.1
Current indicators suggest that, globally,
less than 10% of men who have sex with men
have access to the HIV prevention and AIDS
care services they need. Many factors
contribute to this situation, including, societal
and community denial, stigma, discrimination
and human rights abuses.2 The situation is
even worse for women who have sex with
women, where risk factors are considered to
be minimal and in some cases even absent.
What aggravates the situation even further is
the assumption that sexuality and sexual
behaviour is exclusively heterosexual and
transmission of HIV between people of the same sex is often obscured
within these heterosexual patterns of viral transmission. This remains
a global challenge in addressing HIV prevention for lesbian and
gay people.
In South Africa, the Constitution3 in Section 27(1) provides that
everyone has the right to access to health care services. The term
‘everyone’ in this section is read and understood to include lesbian and
gay people in line with section 9(3) of the Constitution which
states that:
The state may not unfairly discriminate directly or indirectly
against anyone on one or more grounds, including race, gender,
sex, pregnancy, marital status, ethnic or social origin, colour,
sexual orientation, age, disability, religion, conscience, belief,
culture, language and birth.
The challenge for South Africa is ‘the right to access’. When we
talk about access, it is implied that the state has the responsibility to
ensure progressive realisation of all rights enshrined in the
Constitution, within its available resources, for all citizens of South
Africa. ‘All’ in this case means everyone, including lesbian and gay
people. However, in dealing with the right to access to healthcare,
specifically the right to access HIV and AIDS prevention programmes,
the state continues to fail, marginalise and exclude lesbian and gay
people. The state continues to introduce HIV prevention methods that
are hostile and alienating to sexual behaviour between men who have
sex with men (MSM), and women who have sex with women (WSW).
The HIV prevention methods and programmes that have been
introduced thus far assume that the sexual population is exclusively
heterosexual, by perpetually limiting HIV prevention to a safer
penetration of a vagina by a penis. This is what a condom is aimed at
achieving, protecting a penis from transmitting a virus into a vagina.
As much as most people, who practice anal sex, also use a condom, the
fact is that the idea behind the use of a condom is that of a heterosexual
construction of sexual behaviour. It is this construction of sexual
behaviour that is at the root of marginalisation and exclusion against
lesbian and gay people. What remains a serious challenge is the
supremacy of hetero-sexism. This is what needs to be uprooted. The
state has a challenge to think beyond hetero-sexism. It is time to also
think lesbian, gay, bisexual, transgender and intersex when designing
HIV and AIDS and STI prevention programmes.
Prevention needs
Lesbian and gay people have specific needs for HIV and AIDS and
STI prevention. This is not to suggest that there needs to be special
treatment for men who have sex with men and women who have sex
with women. On the contrary, men who have sex with men also need
to use condoms similarly as men who have sex with women. In
addition, women who have sex with women need to also use condoms
10 aLQ – November 2006
There is no mention of sexual
minorities… HIV prevention challenges for
lesbian and gay people in South Africa:
Fikile Vilakazi
There is no mention of sexual minorities …
G
to prevent viral transmission, in an event that they share sex toys or
have sex with men. The point suggested here is that the use of condoms
alone is not adequate to address the needs of people from diverse
sexual orientations. There is a need to provide accessible femidoms
(female condoms), fingerdoms (finger condoms), dental dams (for
viral prevention during oral sex), and water-based lubricants in
addition to condoms.
Furthermore, it is crucial that safer sex and HIV prevention
education programmes incorporate the diversity of sexual orientation,
including education regarding women who have sex with women and
men who have sex with men. Currently, the situation is such that safer
sex and HIV and AIDS prevention education only talk about sex
between people of the opposite sex, women and men. This is not only
limiting, but also exposing lesbian and gay people, MSM and WSW, to
dangers of lack of education around viral transmission in the way that
they practice sex, and thus, making them vulnerable to, and at risk of,
HIV transmission. This also marginalises, excludes and denies lesbian
and gay people the right to access to information and education
regarding their sexuality. This is a violation of basic human and
constitutionally guaranteed rights. It remains a contradiction to the
values and spirit of the Constitution and thus, requires to be challenged.
HIV prevention strategies
The Khomanani Programmes introduced an HIV and AIDS
prevention campaign late last year titled, Let’s Take Our Relationship
To The Next Level. This campaign was exclusively heterosexual in
design. Even though a challenge was raised at a consultation where this
campaign was launched, stating that it is important to build messages
that also promote HIV and AIDS and STI prevention between men
who have sex with men and women who have sex with women; this
never happened. The campaign was all over the media, with no
messages addressing the diversity of sexual behaviour in preventing
HIV transmission. This remains a huge challenge.
One other challenge is the of lack of capacity of healthcare
practitioners in dealing with issues of sexual orientation diversity and,
specifically, the needs of lesbian and gay people in general. Most
lesbian and gay people have been denied access to healthcare services
on the basis that they were either lesbian or gay. Most lesbian women
seeking post-exposure prophylaxis (PEP) after an incident of ‘curative
rape’ have experienced immense prejudice and homophobic attitudes
from healthcare providers. As a result, some even decided to abandon
treatment and run the risk of viral infection. The situation has been
reported anecdotally by some lesbian women rape survivors, who fell
pregnant as a result of hate-based rape, and, during pregnancy,
discovered that they were infected with HIV. In seeking prevention
methods for the child, using prevention of mother to child
transmission (PMTCT) services, they also experienced extreme
prejudice and homophobia from healthcare practitioners. This,
arguably, indicates the importance that state and health ministries have,
as part of its human resource development
programme, to broaden the understanding of
these issues and how they intersect with
prevention of STI and HIV and AIDS.
National government introduced an HIV
and AIDS prevention strategy between the
years 2000 – 2005. The cornerstone of this
strategy was the ‘Abstain, Be Faithful and
Condomise’ (ABC) programme. The ABC
programme has been proven to be ineffective
in South Africa. The rate of new HIV
infections is on the increase, regardless of the
proposed ABC programme. Most young
people have alluded to the fact that abstinence
and being faithful, as a strategy to prevent
HIV transmission, is not realistic. Young
people are sexual beings and they experiment
with sex at a very young age. In fact, the idea
of abstinence works for very few people, if
any. It is a moralistic approach that can only
be adhered to by few. This leaves the majority
of youth at risk of viral infections and
transmission. The situation is also similar
for adult women in monogamous
relationships. Their male partners often
have more than one partner and do not
disclose their sexual involvements. These
women are mostly vulnerable to contracting
HIV from their partners whilst in so-called
‘faithful relationships’.
Generally, in South Africa, there seems to
be a serious lack of vision regarding the
design and implementation of HIV and AIDS
prevention programmes. The focus on lesbian
and gay people is non-existent within
mainstream agencies. Government policies
and programmes, including prevention of
mother to child transmission (PMTCT),
post-exposure prophylaxis (PEP), and the
ABC prevention programmes are inaccessible
to lesbian and gay people, since they are not
designed in such a manner that accommodate
sexual behavioural diversity. In addition, the
health practitioners are often not equipped to
handle issues of sexual diversity in
implementing HIV prevention programmes.
There are a number of lesbian women
who are targeted for ‘curative rape’ in South
African townships and often require access to
PEP and in some cases to the PMTCT
programme as a result. The experience for
most has been that the health practitioner will
just assume that they are heterosexual. Health
practitioners would ask questions like: ‘Do
you have a boyfriend? When was the last time
you had sex with your boyfriend?’ The other
extreme is pure homophobic treatment, where
people are often asked why they are lesbians
aLQ – November 2006 11
…the point … is that the use of
condoms alone is not adequate to
address the needs of people from
diverse sexual orientations…
There is no mention of sexual minorities …
T
or gays in the first place. The treatment often
diverts to people’s sexual orientation, rather
than addressing the issue at hand. Due to
these factors, most lesbian and gay people
eventually decide not to seek HIV prevention.
It is estimated that about 6% of lesbian and
gay people have been refused access to
healthcare on the basis of their sexual
orientation.4 This is not only unacceptable,
but also violates the right to access healthcare
services, as guaranteed in the Constitution of
South Africa. Everyone has the equal right to
access to healthcare service.5
The experience is similar, and perhaps
worse, in other countries where homosexuality
is still considered a criminal offence. Many
African states have laws that penalise
homosexuality through imprisonment and
death penalty. The situation varies from
country to country. Most societies associate
HIV and AIDS with homosexuality. It is often
viewed as ‘a homosexual disease’. This
phenomenon is common globally. This kind
of perception creates a barrier for lesbian and
gay people to access HIV and AIDS
prevention programmes, due to fear of
marginalisation and stigmatisation that may
result in arrest, detention, assault and death
for many. These abuses are also closely linked
to the spread of HIV and AIDS. Sodomy
laws, which violate human rights to privacy
and non-discrimination, undermine HIV and
AIDS outreach to men (and women) who
have sex with people of the same sex. State
failure to protect lesbian, gay, bisexual and
transgender people from violence and abuse
by police, healthcare practitioners and private
citizens, marginalises and inhibits people
12 aLQ – November 2006 There is no mention of sexual minorities …
Fikile Vilakazi is the Advocacy Officer at OUT LGBT Wellbeing,
a non-profit making organisation aimed at reducing
heterosexism and challenging homophobia in society.
For further information and/or comments, please contact her
on +27 12 344 5108 or at advocacy@out.org.za.
from seeking prevention for HIV and other sexually transmitted
diseases that increase the risk of HIV transmission.6
There is very little evidence of HIV prevalence in South Africa
amongst men who have sex with men and women who have sex with
women, such that there is lack of directed effort to design HIV
prevention programmes that can target this group. The only available
and accessible HIV prevention method is the use of a condom. This is
useful to a certain extent for people of the same sex. Men who have sex
with men and women who have sex with women do not always use
condoms for protection and prevention of infections. Lesbian and gay
people also require accessible dental dams, gloves and water-based
lubricants and these forms of prevention are not available from state
facilities. People needing them have to purchase them at very
expensive costs. The challenge is that the majority of lesbian and gay
people cannot afford to buy these products and resort to unsafe sex, or
improvising with condoms and that is not always safe and adequate.
This is a global experience for lesbian and gay people in different parts
of the Africa and the world.
Conclusion
Lesbian and gay people in South Africa remain on the fringes and
margins of society. In various mainstream programmes there is no
mention of sexual minorities as a vulnerable group. Many programmes
target women, children, youth, people with disabilities, displaced
persons and refugees as vulnerable. Then there is a mention of ‘other’
as a category. One would assume that ‘other’ includes lesbian and gay
people, but this is not necessarily implied, since it is always subject to
the interpretation of the reader. This tendency is also very common
with health programmes in South Africa, specifically with HIV and
AIDS prevention programmes.
The state has, thus far, not attempted to address HIV prevention
that encompasses the diversity of sexual behaviour present in South
Africa. There is still a lot of work that needs to be done to lobby
decision-makers and influence policy in this regard. It is important to
have a joint collaboration between the state and civil society to address
this social deficit impeding on HIV prevention efforts.
FOOTNOTES:
1. Abuja HIV Declaration for lesbian, gay, bisexual, transgender and intersex people, Nigeria, 2005
2. Men who have sex with men, HIV prevention and care: Report of a UNAIDS stakeholder consultation:
Geneva, Nov 2005.
3. The Constitution of South Africa, Act No 108 of 1996.
4. Wells, H. 2003. The Levels of Empowerment of Lesbian, Gay, Bisexual, Transgender and Intersex people in
Gauteng: OUT LGBT Wellbeing: Gauteng.
5. Section 27 of the Constitution.
6. HRW. 2004. ‘Hated To Death: Homophobia, Violence and Jamaica HIV/AIDS Epidemic’. In: Human Rights
Watch, November 2004, Vol. 16, No 6 (B).
…most lesbian women
seeking postexposure
prophylaxis
(PEP) after an incident
of ‘curative rape’ have
experienced immense
prejudice and
homophobic attitudes
from healthcare
providers…
P
I was diagnosed as living with HIV on 10 December 1999,
International Human Rights Day. Why did negative media and a
climate of fear around HIV/AIDS cause me to delay having an HIV
test until 1999?
Today I live positively and healthily with HIV. The double stigma
of being gay and living with HIV has made my journey a sometimes
bumpy and eventful one. How does language and being seen as
different impact on our attitudes and actions around HIV prevention
and treatment?
The power of language
I was alive. I am alive. The most horrifying was the absolute lack
of preparation of the doctor who gave me the news. Horror was
exactly what I felt. I had in front of me a diagnostic machine, a
dehumanised medical apparatus that could, suddenly, catch me
in its gears and take me to something much more terrible than
AIDS: the indignity of an empty death, hospitalised, death as a
vital experience stolen from me. I left that consultation room
unhinged. [Herbert Daniel, 1989]1
Language is powerful. It shapes our ideas and attitudes. It affects
our behaviour – what we do, what we don’t do, and what we would like
to do, but avoid or put off until a rainy day.
Over the last 25 years since AIDS became a reality in our lives, the
language of the mainstream media has played a leading role in casting
the HIV/AIDS pandemic as a shadow soiling our world. This was the
overt language of AIDS as a ‘deadly disease’, ‘scourge’, ’cancerous
growth’ and ‘gay plague’. Or the covert language of indirectly
referring to AIDS as a ‘dreaded illness’ or ‘that thing’. Or simply
saying nothing.
People living with HIV and AIDS were called ‘AIDS sufferers’,
‘HIV victims’ and ‘sick patients’. We were defined by our HIV status
as ‘HIV positive’ or ‘HIV-infected people’, just as people living with
disabilities used to be called ‘disabled’, ‘handicapped’ or
‘crippled people’.
Negative labels and invisibility also clouded the language of the
popular, spoken word:
• We heard hushed whispers at funerals of ‘did you know?’
• There was talk of ‘tuberculosis (TB)’
or ‘pneumonia’, or the more comfortable
shield of ‘a long illness’, rather than a
link to an AIDS-related illness as cause
of death.
Closer to home, the stigmatising stain of
language was now a part of our indigenous
languages too. HIV became ‘amagama
amathathu (the three words)’ and AIDS
‘amagama amane (the four words)’. Many
people dared not speak the name, yet we
conveyed the message that HIV was
everywhere and affecting all of us – rich and
poor, black and white, women and men,
straight and gay, young and old. At least we
began to admit that we were all affected, for
example, saying ‘isifo esikhoyo (the sickness
that is among us)’.
The language of power
The language of power has also
influenced the South African HIV/AIDS
landscape – for most of the over 5,5 million
people living with HIV, in a negative and
confusing way:
• President Mbeki openly questioned
whether or not HIV is the cause of
AIDS.
• Minister of Health Tshabalala-
Msimang has repeatedly questioned the
effectiveness of antiretrovirals (ARVs).
• Ex-Deputy President Zuma explained
in his rape trial how he took a shower
after unprotected sex to minimise the
possibility of HIV transmission.
Denialist views, delays and confusion
have characterised many government
aLQ – November 2006 13
HIV prevention and treatment:
The power of positive language
HIV prevention and treatment:
The power of positive language
I have lost both my parents to cancer, yet I don’t call myself a ‘cancer
orphan’. Why then does our media write about ‘AIDS orphans’ when
referring to the many thousands of South African children who have
been orphaned by HIV and AIDS?
Derrick Fine
G
programmes and messages. Why have so
many of our people been misled into selecting
between seemingly ‘either-or choices’, such
as ‘prevention or treatment’, and ‘ARVs or
nutrition’? Why has there been so little
government urgency in only agreeing to an
ARV rollout plan in November 2003 and in its
delayed implementation of this plan, for
example, through its very slow purchase and
registration of medicines, and accreditation of
ARV sites?
Government and leadership messages do
not just float in the wind. People may not
always understand these messages, but they
do listen to them. The impact of negative,
confusing messages is profound. Take the
example of the years spent denying the
existence of HIV, or at least seriously
questioning the urgency of the HIV/AIDS
pandemic as a challenge for all South
Africans. In awareness workshops,
participants would commonly ask in
response: ‘Why prevent something that doesn’t
exist? Why use a condom? Why take an HIV
test if HIV doesn’t cause AIDS? Why take
ARVs if they are so bad for us?’.
Similarly, messages that are not inclusive
or messages that stigmatise affect our healthseeking
and health-protecting behaviour:
• The Government’s ABC (Abstain, Be
Faithful, Condomise) campaign has
failed to reach and change the
behaviour of many young people, who
are sexually active.
• Prevention messages and policies,
such as the policy on donating blood,
have sometimes labelled ‘high-risk
groups’, rather than identifying ‘risky
sexual acts’ that affect all people. This
has, for example, led to stigmatising
and marginalising sex workers, or men
who have sex with men.
The pain of losing close friends has sharply brought home to me
the damage caused by fear and denial:
• In 2002, S died a lonely death from AIDS-related TB. His selfstigma
meant that he could not disclose that he had been living
with HIV for some time, and thus, did not have access to the
support he deserved. Was he influenced by the political climate
at the time – little hope and no access to ARVs in the public sector?
• In 2005, D died from a number of AIDS-related illnesses. She
had been living openly with HIV for a few years, but her mother
discouraged her from taking ARVs when she needed them. Her
mom, a nurse, believed the Minister of Health’s view that ‘ARVs
are toxic’. D did not have the chance to live and discover that the
benefits of ARVs far outweigh possible side effects.
How do we, in any language, explain the continued lack of urgency
around treatment, when around 1 400 people die preventable deaths
every day, and an estimated 400 000 people await ARV treatment?
Our visibility as people living with HIV and open, clear HIV/AIDS
communication are vital in overcoming stigma and more unnecessary
AIDS-related deaths. The key questions are:
• Can there be a real change of heart and pace in the way our
country responds to and prioritises HIV prevention and treatment
efforts?
• Can this change of emphasis happen without strong political
will and leadership, and a move away from political denialism
and double-speak on HIV/AIDS issues?2
Can we turn the tide?
OUT OF THE SHADOWS
Keeping up with news
Of infected suffering victims
Unfeeling, unwelcome, deadly names
Written by others that think they know
How it feels to be alive
Time to show
Our faces
Our voices
Our names
Telling tales of positive living
Letting them know
How it feels to be alive.
[My poem]
Can we adapt our HIV/AIDS communication and get through to
many more people by moving away from meaningless ‘either-or’
options, or from language that is insensitive, hurtful and patronising?
Yes, we can! We can start by getting the basics right, such as ensuring
that our ‘HIV prevention and testing’ messages are tied to ‘treatment
literacy’ messages – in other words, knowing that effective treatment
is available if needed, can help reduce the fear of knowing your
HIV status.
14 aLQ – November 2006
…language is
powerful. It shapes our
ideas and attitudes. It
affects our behaviour…
HIV prevention and treatment:
The power of positive language
I People living with HIV and AIDS have come a long way since the
early ‘panic’ years of the pandemic when we seldom heard about
‘living with AIDS’ and there was hardly a mention of ‘HIV’. The main
message was ‘AIDS = death’. Following courageous international role
models, a number of South African people living with HIV began to
disclose publicly in the late 1980s and early 1990s, and organisations
emerged to speak for and represent our interests. We were inspired by
gender activists and the efforts of NGOs, like Rape Crisis, in changing
‘victims’ into a ‘survivor’ mentality.
Positive role models, who were strong, proud and living positively,
helped to slowly change the public discourse around HIV/AIDS, with
the growing support of parts of the media in talk shows, newspaper
columns, magazines and videos:
• A wider circle of people disclosing and living positively gave
HIV a human face and voice. As people living with HIV, we
talked about our lives, hopes and dreams.
• In time, the media began to write more about ‘HIV’ and ‘living
with HIV’, and not just ‘AIDS’ and ‘dying of AIDS’. We were
whole people living with HIV as one part of our lives.
• The advocacy and pressure of communities and civil society
organisations, like the Treatment Action Campaign, helped to
bring the possibility of increasing access to the health care we
needed, for example, through struggles to make lifesaving ARVs
and treatments for opportunistic infections available.
The tide was slowly turning away from the negative language of
doom and gloom to a more positive outlook of hope, options,
partnerships, knowing your HIV status, disclosing where possible, and
facing up to the challenge of HIV as an increasingly manageable
condition. AIDS denialism, pseudo-science and moralistic opposition
to prevention methods, such as condoms, were being gradually
overtaken by advances in HIV science, for example, research into
microbicides to enhance prevention, and developing ARV
combinations with a lower profile of side effects and a reduced
pill load.
Some positive language guidelines
I will remember that I don’t help
patients, I help people.
[Link Pharmacist’s Oath]
The shift from silence to visibility created
space for us to develop our own ways of
talking about ourselves as people living with
HIV. Openness was the key to help us turn
negatives into positives, for example, to make
young people feel that they could benefit
from finding out their HIV status, and
protecting themselves and others.
Using positive, affirming language
around HIV is not about political correctness,
but about shifting attitudes, beliefs and
policies where these stand in the way of vital
goals, like reinforcing HIV prevention and
increasing access to HIV treatment. The links
between openness and prevention are often
overlooked. Short-sighted, limited HIV
prevention efforts tend to focus only on
people who are not already living with HIV:
• As close to 6 million people in South
Africa are living with HIV, what about
also reaching these people with focused
messages about the possibility of
re-infection or being infected with a
different strain of HIV?
• Against a backdrop of an estimated
500 000 new HIV infections every year,
what about all the people who do not
know their HIV status? Or people who
do know, but do not disclose, or do not
practise safer sex, or do not seek access
to ongoing health care.
Openly Positive3 is a collective of people
living with HIV that aims to help create a
public climate that makes it easier for
people living with HIV to disclose, and to
participate in developing, implementing
and evaluating programmes, policies
and practices that affect us as people
living with HIV. My colleague,
Elaine Maane, and I developed a number of
‘positive language guidelines’4 to encourage
us all to use personal, precise, inclusive
and sensitive language in our HIV/AIDS
communication:
aLQ – November 2006 15
…in awareness workshops,
participants would commonly ask in
response: ‘Why prevent something
that doesn’t exist? Why use a
condom? Why take an HIV test if
HIV doesn’t cause AIDS? Why take
ARVs if they are so bad for us?’….
HIV prevention and treatment:
The power of positive language
16 aLQ – November 2006
NEGATIVE LANGUAGE
GUIDELINE 1:
Avoid labelling people or reducing
ourselves to HIV
Example: HIV positive person or HIV-infected person
Recognise HIV as one part of who we are
Example: Person living with HIV or person who has HIV
GUIDELINE 2:
Don’t disempower
Example: AIDS victims
Try to empower and give hope
Example: People facing the challenges of living with
HIV and AIDS or people affected by HIV and AIDS
GUIDELINE 3:
Don’t stigmatise or judge
Example: AIDS orphans
Humanise
Example: Children orphaned by AIDS or children
affected by AIDS
GUIDELINE 4:
Don’t victimise or criminalise
Example: HIV sufferers
Humanise
Example: People living with HIV
GUIDELINE 5:
Don’t sensationalise
Example: Full-blown AIDS
Contextualise, describe and inform
Example: AIDS (and explain HIV progression, as
there is no half-blown AIDS)
GUIDELINE 6:
Don’t depersonalise and create distance
Example: Patient
Personalise and identify with people
Example: Person, Elaine, Derrick
GUIDELINE 7:
Don’t generalise or be vague
Example: AIDS transmission or AIDS test
Specify and be precise
Example: HIV transmission or HIV test
GUIDELINE 8:
Don’t generalise with individual people
Example: She is living with HIV/AIDS
When possible, individualise with people
Example: She is living with HIV (if factually correct
and she has consented)
GUIDELINE 9:
Try not to disguise or avoid
Example: The virus
Be as open and transparent as possible
Example: HIV
GUIDELINE 10:
Don’t exclude
Example: AIDS conference or AIDS policy
Be inclusive
Example: HIV/AIDS conference or HIV/AIDS policy
GUIDELINE 11:
Avoid unnecessary abbreviations
Example: PLHAs (in a speech)
Use abbreviations selectively and sensitively
Example: People living with HIV and AIDS (more
people-friendly, although an abbreviation may be
better with repeated use in a long written document)
GUIDELINE 12:
Don’t confuse or be inconsistent
Example: AIDS patients and people on
ARV treatment
Be clear and consistent in one document
Example: People on ARV treatment
POSITIVE LANGUAGE
HIV prevention and treatment:
The power of positive language
S
What can you do?
What can we all do, as individuals and community members, to
implement these positive language guidelines, and help reduce stigma
and unfair discrimination in other ways?
Start with yourself, and work through your own personal views
and situation:
• Read, think, talk and share – try to ‘step into the shoes’ of
someone living with HIV, or facing another kind of stigma.
• Have an HIV test.
• If you test HIV negative, try to ensure that you stay HIV negative.
• Promote and practise safer sex.
• If you test HIV positive, make sure you get ongoing support.
• If you test HIV positive, disclose to yourself first and then to
others at your own pace.
• Support other people living with and affected by HIV and
AIDS.
When you are interacting with a person who is living with HIV,
or someone who is HIV negative, or a person who does not know
their HIV status:
• Treat everyone equally and with dignity.
• Promote diversity and non-discrimination.
• Be sensitive with your spoken and written language.
• Try to adapt and use the positive language guidelines in all our
South African languages.
• Be sensitive about confidentiality around HIV status.
• Recognise the rights of all people, and especially people living
with HIV, to make informed choices, for example, to have or to
adopt children.
• Be sensitive in giving, or referrals, for emotional support,
counselling, treatment and care.
• Consult and involve people living with, or affected by, HIV in
HIV/AIDS policies, programmes and practices.
Sentenced to life with HIV!
Four years on ARVs have given me back my life and my health. I
have been sentenced to life with HIV. Actually, it is not a sentence that
hangs over me in any way. It is an
opportunity. I have long stopped feeling
sorry for myself. Instead, I am actively
engaging in changing my own life and the
lives of others.
For me, ‘positive living’ means that
today is the first day of a long and full life
living with HIV, and facing all of life’s other
challenges and joys. I invite you to join me
on a journey to help break down stigma,
and, in the spirit of positive language, to
build an environment where people living
with HIV can live open, visible, healthy and
fulfilling lives.
FOOTNOTES:
1. Herbert Daniel was an HIV activist in Brazil. Daniel H. 1989. Vida
antes da morte – Life before death. Available at
www.geocities.com/Athens/Acropolis/7051/exilio4in.html.
2. Recent statements by Deputy Minister of Health Madlala-Routledge
have been a breath of fresh air, for example, saying clearly that good
nutrition is not an alternative to ARV treatment.
3. Openly Positive believes that our openness and visibility as people
living with HIV is our most important tool in breaking down stigma and
prejudice around HIV/AIDS. To reach Openly Positive, please contact
the author of the article.
4. The guidelines in this article have been further developed from an
original longer version Positive language in HIV/AIDS communication
presented at the 2005 South African AIDS Conference in Durban.
aLQ – November 2006 17
Derrick Fine is an independent
HIV/AIDS writer, editor and trainer, who
is also active in the Openly Positive
collective promoting positive living and
positive language around HIV/AIDS.
For more information and/or
comments, please contact him on
+27 21 783 1699 or at
derrickf@iafrica.com.
..how do we, in any language,
explain the continued lack of
urgency around treatment, when
around 1 400 people die
preventable deaths every day…
HIV prevention and treatment:
The power of positive language
I
This article explores whether or not HIV
prevention messages in South Africa are
effectively ‘targeting’ and/or reaching people
over 50, and what kind of considerations are
given to people over 50 in HIV prevention
planning and messages, especially in the light
of growing infection rates amongst the
‘elderly’. This article argues that people over
50 are largely invisible and ignored, both from
a societal and HIV prevention perspective,
primarily due to prevailing age-related stigma
and discrimination.
Increasingly impacted by HIV
infections and yet invisible
It is becoming increasingly clear that
people over 50 are not only impacted by
HIV and AIDS in terms of providing care
and support, but are also, in fact, representing
a greater percentage of the number of
people infected with HIV. This is evidenced
in the UNAIDS decision for the 2006
global epidemic report to shift the age
bracket of people infected with HIV from
‘15 – 49 years old’ to ‘15 years and over’
stating that ‘it is now evident that a
substantial proportion of people living with
HIV are 50 years and older’ [2006 Report
on the Global AIDS Epidemic:9]. The report
also states that the estimated number of
people aged 50 years and older, living
with HIV in 2005, is 2.8 million1,
approximately 7% of the total number of
people living with HIV.
Yet, this ‘group’ remains for the most
part invisible in reporting. UNAIDS data
sheets for South Africa reflect on numbers
of people aged 15 and over, on women aged
15 and older, on children from 0 – 14, and nothing to indicate the
prevalence of HIV amongst South Africans over 50 years old.2 In
fact, most research and information regarding people over 50, comes
from US-based sources, where in 1998, over 10% of people infected
with HIV were over 50 years old.3 According to another report4, the
rate of infection has been climbing steadily ever since. Speculation
around the infection rates in South Africa cannot be based on US
estimates, due to the different circumstances and HIV prevalence
rates in these countries, but one indication that the levels in South
Africa might be as high as 20% for people over 50 comes from the
2005 AIDS Epidemic Update where data for Botswana indicate the
current infection levels among people over 50 is at 21%.5 The same
report indicates in the same paragraph that Botswana’s rates of
infection are comparable to South Africa’s, and thus, we can deduce
that the number of people over 50 who have tested HIV positive in
South Africa might be as high as 20%.
The invisibility of people over 50 in the HIV and AIDS discourse
is further evidenced by Du Guerny (2002) writing about UNAIDS
and its multi-sectoral response, which includes many specific ‘at
risk’ or ‘focus groups’, such as labour, substance abusers, children
and youth, and yet, no organisation is directly representing ‘the
elderly’.6 Currently, UNAIDS is calling for the necessity of
prevention strategies to ‘tackle underlying factors’, such as ‘societal
inequalities and injustices’, and to appropriately address groups that
are marginalised, stigmatised or otherwise at greater risk of HIV
infection.7 However, besides a paragraph detailing that people over
50 are increasingly infected by HIV and AIDS, there is little
mention of people over 50 as a ‘group’ who are at risk of HIV infection,
or who need to be included in HIV prevention programmes.
This invisibility continues in most HIV prevention messages. A
telling comment that indicates why the HIV infection rate in
people over 50 is climbing comes from Engle [1998:1] who argues that
…looking at the majority of safer sex workshops and street
outreach programs, one would get the impression that only the
young are at risk of contracting HIV.
This is certainly reflected in South Africa, where prevalent HIV
prevention campaigns, such as LoveLife, target youth specifically. If
18 aLQ – November 2006 ‘
Those’ elderly people
HIV prevention messages miss people over 50
‘Those’ elderly people
HIV prevention messages miss people over 50
The goal must be to ensure that countries everywhere come as close
as possible to achieving universal access to HIV prevention.
[AIDS Epidemic Update, 2005:5]
Emma Harvey
Mprevention messages geared towards preventing HIV infection
through sexual intercourse do not reflect people over 50 as being at
risk, then why would there be cause to think about prevention? And
even if the prevalent assumption is that ‘the elderly’ are caring for
children orphaned by AIDS-related illnesses, there are still no HIV
prevention messages for caregivers that focus on universal
precautions. The question then remains why people over 50 are not
included in HIV prevention messages. It could be argued that this is
due to the prevalence of stigma and discrimination against people
over 50, and perceptions of what kind of behaviour ‘they are
supposed to be engaging in’.
Myths, stereotypes and misconceptions about people
over 50 and HIV
One of the prevalent misconceptions around people over 50 and
HIV is that people over 50 are, and can only be, considered as the
caregivers to a generation of children whose parents have died of
AIDS-related illnesses. Du Guerny did a survey of a UNGASS
meeting with 123 paragraphs of resolutions. The ‘elderly’ are only
mentioned three times in this document, and only in relation to the
fact that the impact on the ‘youth’ is more severe, than the ‘elderly’;
and that ‘elderly women’ end up being caregivers. The only mention
of the impact of HIV and AIDS on the ‘elderly’ is grouped with
other ‘minorities’, in the context of overburdened public healthcare
systems which may further marginalise ‘minorities’.8 Du Guerny
[2002:2] states that:
In this inter-government consensus, the only role recognised
for the elderly is that of caregiver and the association with the
traditional role of women leads one to think that countries are
mostly referring to elderly women and not men. It should also
be stressed that certain roles are assigned to the elderly by
others; they are treated as minors. The issue of HIV/AIDS
is nowhere seen or presented from the perspective the
elderly themselves.
Though, even with this strong argument,
Du Guerny himself fails to take into account
that people over 50 may be increasingly
infected with HIV. As mentioned above, if
caregiving is ‘the role’ of people over 50 in
the AIDS pandemic, there is still a general
lack of prevention messages, which would
ensure that caregivers are aware of the risks
of HIV infection through bodily fluids.
The ‘caregiver only’ role ties in to what
seems to be the primary misconception,
which is simply that people over 50 are not
at risk for HIV infection, because people
over 50 are not sexually active, and ‘shouldn’t
be’, which, in turn, relates to many other
myths and stereotypes around sex.
Engle (1998) identifies the myths
around people over 50 and sex as:
Old people are no longer interested in
sex; if they are interested, no one is
interested in them; If they do have sex,
it’s within a monogamous, heterosexual
relationship.
Yet in reality, as argued by Djihemine et
al (2004):
…it has been noticed that people
classified as the elderly (more than 50
years old) are still sexually active,
have frequent sexual relations with
much more younger people and are
reluctant to prevention methods such
as the systematic use of condoms
during sexual intercourse in general.
The association of HIV with sexual
behaviour, combined with the taboo on
sexuality for people over 50 creates an
environment in which stigma based on age
and sexual activity preclude the possibility
of doctors, service providers and prevention
messages even raising the issue of sex with
people over 50, let alone talking about HIV
prevention.9 This is especially true in a
context where UNAIDS identifies a key
area of prevention intervention through
family planning clinics. If people over 50
are no longer accessing family planning
clinics,10 or engaging with health service
aLQ – November 2006 19
‘Those’ elderly people
HIV prevention messages miss people over 50
…and even if the prevalent
assumption is that ‘the elderly’
are caring for children orphaned
by AIDS-related illnesses, there
are still no HIV prevention
messages for caregivers that
focus on universal precautions…
T providers about sexual and reproductive
health, there are no opportunities for
engaging in conversations that might
include information on HIV transmission
and prevention.
This reality that people over 50 are still
sexually active has another reality
associated with it in that people over 50
have a higher risk of HIV transmission, due
to lack of information, age-related
biological reasons (especially for women,
since the mucosal lining is not as active
resulting in more tearing during sexual
intercourse), and are, for the most part, not
willing to use, or do not know about, condoms.
A US-based survey in 199411 indicated
that people over 50 are only one sixth as
likely to use condoms, than counterparts in
their twenties; and only one fifth as likely to
be tested for HIV. There is no data for a
comparison to South Africa, but it could be
argued that given the traditional and
patriarchal social models of behaviour, and
the tendency to keep sex as ‘a hidden and
unspoken of thing’, it would not be
surprising if the statistics in South Africa
exceed those of the US in terms of ‘older
people’ being less likely to use condoms and
be tested for HIV.
Only one project, in a limited search,
showed evidence of a project in South
Africa working with people over 50 around
HIV prevention – the Community
Information, Empowerment and
Transparency Trust which is based in
Amathole. The project is conducting HIV
prevention workshops geared specifically towards ‘elderly’ people;
though these activities focus on people over 50 to be a role model or
‘moral yardstick’ for youth. In essence, these programmes are still
aimed at providing support services for younger people. However, a
definite side effect is that people in the community, who are over 50,
are becoming HIV prevention literate, and it would be interesting to
ascertain whether or not this has an impact on HIV prevention
amongst the ‘elderly’, but the source, unfortunately, does not
indicate this. The following two quotes12 illustrate the reluctance and
level of taboo of talking about sex with people over 50:
The first few sessions are very quiet, but then they get used to
all the new words and they start asking us all the questions
that may have been bottled inside them for years.
We keep the male and female elders separate, because they are
shy even to talk in front of members of the opposite sex of their
own age group.
This reluctance to speak about sex and sexual practices,
including HIV prevention, has, arguably, a deep impact on the level
of HIV prevention that can be spoken about, or accessed, or used by
people over 50. If a person is reluctant to speak to a service provider
about sex, what is the likelihood of that person accessing HIV
prevention information and methods?
Another common stigma relating to people over 50 and HIV
relates to resource allocation. Ageism and prejudicial attitudes that
consider it a ‘waste’ to spend money on people over 50 may play a
role in limiting ‘elderly’ people in choices around access to HIV
prevention and other necessary resources. This myth that it is a
‘waste’ is fuelled by an attitude that people over 50 have already
‘lived their lives’, so it is not really important to spend money on
HIV prevention messages focussing on people over 50.13
All of these myths, stigmas and stereotypes represent, sometimes
subtle and sometimes blatant, discrimination against people over 50
that has a direct impact on the extent to which HIV prevention
messaging reaches people over 50, and how freely HIV prevention
measures are accessible and used. ‘Those pushed to the margins of
society are at particular risk’ [AIDS Epidemic Update, 2005:11].
20 aLQ – November 2006
…people over 50 are
not at risk for HIV
infection, because
people over 50 are
not sexually active,
and ‘shouldn’t be’…
…if a person is reluctant to speak
to a service provider about sex,
what is the likelihood of that
person accessing HIV prevention
information and methods?…
‘Those’ elderly people
HIV prevention messages miss people over 50
O
The very invisibility of people over 50 points to their
marginalisation, and this combined with the rising HIV infection
rates, creates a disabling environment for people over 50 to access
prevention. Given this, it would be fair to argue that HIV prevention
messages are failing people over 50 years old.
Solutions
It is evident that the combination of stigma and misconceptions
about people over 50, along with the prevailing stigma and
discrimination relating to HIV and AIDS, creates an environment in
which people over 50 are not adequately provided for in terms of
HIV prevention and prevention measures; not in respect of
prevention of HIV transmission during care giving activities, and
even less so in respect of sexual transmission of HIV. It is also
clear that:
Stigma taps into existing prejudices and patterns of exclusion
and further marginalizes people who might already be more
vulnerable to HIV infection. [AIDS Epidemic Update,
2005:10]
The imperative remains to determine what would be an
appropriate solution. Should HIV prevention programmes and
strategies provide specific messages for people over 50?
Recognising that HIV and AIDS expose prevailing stigma,
discrimination and marginalisation that occur in society, Du Guerny
[2002:2] argues that:
One thing issues such as aging, gender or HIV/AIDS have in
common is that they reveal the hidden face of societies, the
areas of dysfunction since the reality of the situation usually
clashes with the images every society likes to project of itself.
One can then only wonder whether the more representative
view of the elderly is not to be found in the HIV/AIDS
statements rather than in those on aging?!
Or should HIV prevention programmes and strategies provide
universal messages and access to create an enabling environment for
all to access prevention? This would require following some of the
essential policy actions for HIV prevention according to UNAIDS,
namely, ensuring that human rights of all people, including people
over 50, are promoted, protected and respected, and that stigma and
discrimination are addressed; and that
information on modes of HIV transmission
and prevention messages are widespread. It
would also require recognising that people
over 50 are sexually active, and have equal
rights to sexual and reproductive healthcare.
In summary, this means: ‘Prevention
programme efforts must also address people
of all ages to be fully effective’ [AIDS
Epidemic Update, 2005:10].
REFERENCES
Djihemine, A. et al. 2004. ‘The elderly and the
prevention of HIV transmission: The case of
centers for prevention and voluntary testing
(CPVT) in Yaounde, Cameroon’. Paper
presented at the International AIDS
Conference. 2004, July 11-16.
Du Guerny, J. 2002. ‘The elderly, HIV/AIDS and
sustainable rural Development’. Paper
presented at a seminar on Aging and Rural
Development sponsored by the American
Association of Retired Persons. January 2002.
Elderly take up Aids Challenge. 2 May 2006.
(www.southafrica.info/ess_info/sa_glance/health
/aids/ciet-amathole.htm)
Engle, L. 1998. Old AIDS. Body Positive.
(http://thebody.com/bp/jan98/old_aids.html)
FOOTNOTES:
1. UNAIDS. 2006 Report on the Global Epidemic, p9.
2. UNAIDS. 2006 Report on the Global Epidemic, p455.
3. Engle, 1998.
4. HIV and older people.(www.health24.com/medical/Condition_
centres/777-792-814-1768,22151.asp)
5. UNAIDS. 2005 AIDS Epidemic Update, p10.
6. Du Guerny, 2002:1.
7. UNAIDS. 2005 AIDS Epidemic Update, pp5,7,10,14.
8. Du Guerney, 2002:2.
9. This article focuses primarily on the sexual transmission of HIV, as
research indicates that this is the primary mode of transmission.
10. AIDS Epidemic Update, 2005:13
11. Engle, 1998.
12. Elderly take up AIDS Challenge, 2 May 2006.
13. HIV and older people.(www.health24.com/medical/Condition_
centres/777-792-814-1768,22151.asp)
aLQ – November 2006 21
Emma Harvey is the Trainer/Facilitator
at the AIDS Legal Network (ALN). For
further information and/or comments,
please contact her on +27 21 447 8435
or at emma@aln.org.za.
…this myth that it is a ‘waste’ is
fuelled by an attitude that people
over 50 have already ‘lived their
lives’, so it is not really important…
‘Those’ elderly people
HIV prevention messages miss people over 50
H 22 aLQ – November 2006
They were never given a chance to save the
lives of their children. Today, we are still
unnecessarily losing about 600 babies to
AIDS. Back then, it was the government
denying children a right to life. Today, it is
their mothers.
When I was pregnant with Nomazizi,
everything was fine with me. I never looked
like someone who has AIDS. Back then, we
were looking at the physical being of a
person. We were looking for symptoms. If
one shows no symptoms, then one is ok.
That is why, even I, could not be bothered to
find out about my HIV status. On top of
everything else, I didn’t know much about
HIV. Women today are more educated about
HIV. There are PMTCT programmes in
almost every government antenatal clinic. It
is up to a woman now to use that
opportunity. It breaks my heart to know, that
there are still a number of children born
with HIV.
She was born on the 9th of April 1999. A
month later, she fell sick with Diarrhoea, flu
with temperature and pneumonia. When I
took her to the hospital, the doctors thought
that it was unusual for a child her age to have all these things at the
same time. They suggested that I give permission to run various
tests. One of the tests was going to be an HIV test. I wanted to know
what it is exactly that was wrong with my baby.
It was on a Friday when they took her blood sample. I had to
come back for the results on the Monday. It was an Elisa test. The
baby had to be hospitalized, because she was very sick and
dehydrated. Because I never thought I was infected with HIV, I
expected the test results to come back negative.
On this Monday morning, I got the shock of my life. The doctor
told me the baby tested positive for HIV. I could not believe this!
That meant I was positive myself. But it needed to be confirmed. I
went for a test and I tested positive for HIV. I was sent to a hospital
social worker for counselling. At the time, I was more worried about
my child. I thought she never deserved that. I was the one who knew
about the existence of HIV, but chose to be ignorant. She really
didn’t have to suffer. I asked the social worker, how long she has to
live. She told me about six to nine months. At nine months my child
passed on. For the whole nine months, she was always in and out of
hospital. She never got better.
Her death put me where I am today. I became an activist. I knew
my child died, because I didn’t know much about HIV, so I became
an educator. I knew she died, because our government didn’t care, so
I became an activist. I was bitter inside. I felt my baby had been
robbed of her life. I wanted to fight for justice. I had no idea where
to start. That is when a friend of mine introduced me to the
Treatment Action Campaign.
I am happy now…
PMTCT in South Africa: A personal reflection
I am happy now…
PMTCT in South Africa: A personal reflection
It’s been more than 6 years now, since I lost my nine month old child to AIDS.
She really didn’t have to die. Something could have been done to save her life.
Her death was so premature and unnecessary. Thousands of young children
died during that time. They died, because their mothers didn’t know about their
HIV status. Mostly, because there was no prevention of mother to child
transmission (PMTCT) programme in place.
Busisiwe Maqungo
ITogether with TAC, we took the government to court for denying
women and children their basic right. The right to life! The
Constitution guarantees everyone the right to life. I knew a lot of
children were dying, while our government was busy with
submarines and arms. They just didn’t care. Someone had to do
something. There was no way we were going to tolerate and endure
pain after apartheid. We chose this government. It had to work for
us. We live in a democratic society! It was in 2001 when we went to
court. The case dragged on until 2003. One needs to bear in mind,
that the court was our last resort, after so many attempts of trying to
convince our government to do the right thing.
In July 2002, the Constitutional Court ruled in our favour. We
had won the case. It was a victory! I was the happiest person in the
whole world. My child’s death was not going to be in vain.
The next battle now was to see to it that mothers are kept healthy
to care for their children. We entered into negotiations again with
our government; with no luck at all. There was no more time or lives
to be wasted. We never wanted any more orphans. We felt treating
mothers was part of PMTCT. What is the point of saving children,
when their mothers are not going to be there? We had to go back to
court. We had again to force our own elected government to do the
right thing. South Africa is a constitutional country. The judge ruled
in our (the people’s) favour. We had won again.
It was after the High Court ruling in December 2001 that I
thought I could have another child. All was well. There was PMTCT
in place and ARVs to guard me, if I fall sick with AIDS. I fell
pregnant in 2002 and gave birth to a beautiful boy the same year in
December. I didn’t just do it. I went through
the right channels. I had to make sure I was
healthy enough to carry a healthy HIV free
child. I spoke to my doctor, who did all the
blood tests, and confirmed my healthy status.
Just before he was born, I took one
Nevirapine. I gave birth within 12 hours of
taking it. When he was 12 months old, I took
him for a test and he tested HIV negative.
He is today one of the most healthy children
in South Africa. I am happy now!
aLQ – November 2006 23
I am happy now…
PMTCT in South Africa: A personal reflection
Busisiwe Maqungo is a Researcher and
Treatment Literacy Practitioner at the
Community Health Media Trust. For more
information and/or comments, please
contact her on +27 21 788 3971 or at
busi@beatit.co.za.
…her death put me where I am
today. I became an activist. I
knew my child died, because
I didn’t know much about HIV, so
I became an educator. I knew she
died, because our government
didn’t care, so I became an
activist…
…just before he was
born, I took one
Nevirapine. I gave
birth within 12 hours
of taking it.
When he was 12
months old, I took him
for a test and he
tested HIV negative….
aLQ – November 2006 24 Feedback
Gahsiena van der Schaff
Feedback…
Provincial Activities
Prevention is an
individual
responsibility…
…we all realised after the meeting, that what
most of us took as facts, were actually
myths… [Limpopo Participant]
The second round of provincial networking
meetings facilitated by the AIDS
Legal Network (ALN) explored
realities and challenges of HIV
prevention. The meetings took
place in the Northern Cape
(4 October 2006), KwaZulu
Natal (12 October 2006),
Mpumalanga (25 October 2006),
Limpopo (30 October 2006),
Western Cape (2 November
2006), North West (9 November
2006), and the Free State
(17 November 2006). At time of
print the meeting in the Eastern
Cape (22 November 2006) has
not yet taken place.
The meetings were based
within the framework that HIV
prevention is proclaimed to be
one of the main strategic areas in the response to the
HIV and AIDS pandemics, while, at the same time, there
are estimates of 1000 new HIV infections per day in our
country; and that acknowledging this contradiction
demands raising the question as to the efficiency of
current HIV prevention efforts and strategies and as to
whether or not HIV prevention strategies are indeed
addressing the context in which people live their lives
and make choices, including sexual choices.
The meetings were aimed to analyse the adequacy
of current HIV prevention strategies; to explore the
various societal factors influencing the effectiveness of
HIV prevention strategies; as well as to assess whether
or not there is a need for a broader scope of HIV
prevention strategies.
HIV prevention, as identified by participants, is
essentially about two things: access to, including the
availability of, prevention tools and services, and
participation in HIV prevention. Providing access to
factual information, based on which informed decisions
can be made and the right to informed consent can
become a reality; access to prevention tools, such as
femidoms, condoms, VCT; as
well as access to healthcare was
identified as the responsibility of
the state.
…prevention is about
access and participation,
and creating a conducive
environment to ensure
maximum participation…
engage municipalities and
AIDS councils…
[Mpumalanga Participant]
The identified challenges to
access to HIV prevention
included, amongst other things,
one’s age, sex, gender, marital
status, geographic location, and
sexual orientation. Access to HIV
prevention is also limited
depending on where the
facilities are situated (inside or outside the community),
who the healthcare professionals on duty are, and
whether or not the healthcare professional is a known
person in the community. In addition, prevailing
discriminatory attitudes, beliefs and practices from
healthcare practitioners, including counsellors,
were raised as one of the barriers to the access to
HIV prevention.
Issues of the unavailability and lack of access to
femidoms were raised in most meetings and interpreted
as a reflection of existing societal beliefs, norms and
values in that women are not ‘supposed to’ be the one’s
making decisions about sexual matters. It is within this
…issues of the
unavailability and
lack of access to
femidoms were
interpreted as …
women are not
‘supposed to’ be the
one’s making
decisions about
sexual matters…
aLQ – November 2006 25
Feedback
context that participants highlighted as the ‘biggest
challenge’ the fact that healthcare professionals are from
the same societal context as the users and thus, married
women, for instance, will experience difficulties in
accessing femidoms, since ‘married women are not
supposed to use any form of prevention’.
A general lack of assured confidentiality at the
facility was commonly raised as one of the challenges.
Participants shared experiences pertaining to the
violation of the right to confidentiality, including
incidences of forced disclosure, and of professionals,
who perform the HIV test, giving the test results to the
counsellor, who, in turn, informs the user of her or his
HIV status. In addition, it became evident that ‘shared
confidentiality’ appears to be the practice in some of the
provinces. While in some cases
facilities ‘persuade’ and/or
‘coerce’ users to inform their
partners of their HIV status, in
other cases the counsellors have
a duty to inform supervisors, who,
in turn, inform management that
user ‘so-and–so’ refuses to
inform their sex partner.
…I will remember not to
force anybody to go for
testing…
[Limpopo Participant]
Recognising that available HIV
prevention services do not define
the extent to which these services
are accessible, an individual’s
‘ability’ to participate in HIV
prevention was identified as a
factor influencing the effectiveness of HIV prevention
strategies and programmes. The expressed rationale for
the debate was that everyone who engages in sexual
activities must participate in HIV prevention through,
for instance, adopting safer sexual practices and
accessing VCT.
…men and women have to communicate about
safer sex, even though they are married…
[North West Participant]
…prevention is an individual responsibility…keep
organising such gatherings…they are eye
opening… [Mpumalanga Participant]
However, the meetings revealed that the lack of
personal responsibility for HIV prevention might be
understood on an intellectual level, but not in practice.
This was illustrated by various debates, including
debates on how one could alter the right to privacy so
as to be ‘legally’ in the position to force people to
disclose their HIV status in order to protect the partners
of people living with HIV; or how one could put pressure
on communities to test for HIV. In some provinces,
participants would argue that when it comes to
‘my protection’, the other person’s right to privacy
cannot be protected, since ‘my partner owes it to me’ to
disclose her or his HIV status. Another issue strongly
defended in some provinces, was the argument that
people must be forced to test for HIV and to
disclose their HIV status, because, ‘if everyone knows
their HIV status, the spread of HIV
will be reduced’. There was also
the displayed sentiment that it
would be ‘easier, less problematic
and take less time and efforts’
to force people to test for HIV and
to disclose their status, than it
would take to change the status
quo of persistent and continued
violation of rights based on one’s
sex, gender, sexual orientation
and/or HIV status.
Participants felt strongly that
the societal context (external
environment) is not conducive
and/or enabling to make
individual informed choices to
protect oneself from the risk of
HIV infection. Issues raised in this
context included prevailing gender inequality, as well as
persistent justifications and acceptance of the status
quo. An individual’s ‘ability’ to participate in HIV
prevention, including access to available services, is
influenced by the internal – own values, beliefs and
norms (‘a common sense of what is right or wrong’);
individual knowledge (‘am I empowered enough to act
on the knowledge’) – as much as the external
environment – values, beliefs and norms existing in
society (‘it is wrong to have sex before marriage’), as well
as society’s reluctance to accept individual choices – in
which HIV prevention takes place.
…very thought provoking…I will remember most
…participants would
argue that when it
comes to ‘my
protection’, the other
person’s right to
privacy cannot be
protected, since ‘my
partner owes it to
me’ to disclose her
or his HIV status…
26 aLQ – November 2006
to change the internal self, before going to the
community… [Western Cape Participant]
The need to re-evaluate the ‘target groups’ for HIV
prevention programmes and messages were also raised as
one of the factors influencing the prevention environment.
Participants also identified advocacy and lobbying
strategies and activities aimed at addressing various HIV
prevention challenges and, simultaneously, intensifying
HIV prevention efforts. Strategies included that
individuals must be empowered through knowledge of
facts; understanding of rights; and the ‘know how’ of
where to report the violation of rights. This
‘empowerment’ also includes the understanding of the
individual responsibility to prevent HIV infection. In
addition, participants identified the need to raise
awareness of the societal context
in which HIV prevention takes
place, including patriarchy,
prevailing value, norm and beliefs
systems, and acceptance of
continued violations based on
gender, sex, sexuality, age and/or
one’s HIV status, and how this is
directly linked to the extent to
which individuals are in the
position to access and participate
in HIV prevention.
…government needs to be
challenged and revisit
prevention strategies that
have been enforced for 10
to 15 years and have not
yet yielded positive results…e.g., high new
infection rates, high teenage pregnancy rates, and
the ‘insights’ of the ABC that even high ranking
officials are ignoring… [Northern Cape Participant]
Other identified strategies included:
• Increased networking and sharing of
knowledge, ideas and strategies, so as to learn
from each other’s experiences
• Communication as the key to effective HIV
prevention (through for instance, door-to-door
campaigns), as well as between partners
• Availability of femidoms – femidoms must be
readily available and women must be made
aware of the use of femidoms (through, for
instance, door to door campaigns)
• Marketing of femidoms – femidoms must
become a ‘fashionable’ commodity
• Developing HIV prevention messages which
give ‘clear’ (not myths) information
• Learning and understanding rights (and the
law) – rights are ‘not just for communities’, but for
everyone
• Increase understanding of individual
responsibility to prevent HIV transmission
• Create a supportive and enabling environment
(free from prejudice and inequality), where facts
inform choices and everyone’s choice is
respected and not judged
…it is always good to discuss certain issues, but
the actual work start now with the
implementation within every
individual…
[Northern Cape Participant]
According to Anand Grover
(2006) ‘all living organisms,
including human beings, are in a
dynamic relationship with their
environment’. Thus, if the internal
environment changes to one of
knowledge, empowerment, and
assertiveness, one will be in the
position to participate in HIV
prevention. Similarly, if the
external environment changes to
one, which is free of stigma,
discrimination and violations of
rights, based on one’s sex,
gender, sexuality and/or HIV status, one will feel ‘free’ to
access and participate in HIV prevention.
…the issue of participation in prevention needs to
be addressed by the majority of the population,
not only 25 participants…that would be a real
positive outcome…
[Western Cape Participant]
…the … sentiment
that it would be
‘easier, less
problematic and take
less time and effort’
to force people to …
disclose their status,
than it would
take to change the
status quo…
Feedback
Gahsiena van der Schaff is the Networking and
Campaign Coordinator of the AIDS Legal Network
(ALN). For more information and/or comments,
please contact her on +27 21 447 8435 or
at campaign@aln.org.za.
B
Current statistics1 reflect that approximately 16, 2%, of the 1000 to 1400
new HIV infections daily in South Africa, are amongst young people aged
15 to 24 years of age. This is an alarming figure by any degree of
argument, and certainly a catalyst for effective campaigning to drastically
reduce new HIV infections amongst youth.
But young people are not the only people at risk of infection and,
therefore, we need to start to recognise other vulnerable groups in
developing HIV prevention messaging, and most importantly, we need
to address and be cautious of, social influences that promote stigma
and discrimination. Otherwise no HIV prevention strategy, no matter
how brilliant, can reach its desired result to drastically reduce the rate
of new HIV infections.
DENIALISM REFLECTS STIGMA
The South African Government’s Comprehensive HIV and AIDS
Care, Management and Treatment Programme (YEAR) has been
implemented with a number of ‘denialist messaging’. The initial
insistence that poverty, and not HIV, causes AIDS; the failure to
promote antiretroviral treatment (ARVs) as the only proven medicine
to reduce the prevalence of HIV in the body; and nutrition, as an effective
supplement, and not an alternative to ARVs, are the main examples of a
denialist government that has further fuelled the stigma attached to
people that are living with HIV and AIDS. This non-acceptance has
played a pivotal role in failing to prevent new HIV infections.
Perhaps, the focus on solely young people in our HIV prevention
campaigns is a signal of a deeper and more silent denial. If we were to
assume that young people are a micro of the macro society, then do
their behaviour patterns not mirror those of mainstream society? Do
we not just focus on young people to evade our fears of the influence
of socialisation? The denial of our behavioural patterns, influenced by
norms, culture and social prejudice, is evident in the messaging that our
prevention campaigns carry, or not carry. And, perhaps, not
seriously taking these ‘influences’ into account could be one of the
reasons why HIV prevention campaigns have, thus far, been ineffective.
INFLUENCE OF GENDER,
CULTURE AND ‘NORMS’
Rape and gender violence
55% of South African rape survivors are
most likely to be young women between 16 to
25 years of age; and as high as 34,6% of
rapists are relatives or intimates of these rape
survivors.2 These statistics are only fractions
of the real picture, since countless rapes go
unreported in South Africa, because of the
stigma women have to endure if they decide
to speak out.3 The ‘victim’ becomes the
‘perpetrator’. These young women and girls
are usually scorned, loose access to important
economic resources and are often chased
from their own homes for taking away the
only breadwinner (if the perpetrator ever even
gets arrested).
Service delivery is another reflection of
our own attitudes and prejudices, postexposure
prophylaxis (PEP) is supposedly
available at most state health institutions and,
yet, very few service providers administer it.
Law enforcers interrogate ‘victims’ in a
fashion that blames them for the rape,
because of suggestive clothing etc. This
patriarchy, including the cultural hierarchy,
that places ‘men on top’ continues to make
women ‘submissive third class
citizens’; is reflected in all our gender
interactions. If ABC prevention messaging is
to work, then these attitudes need to be
addressed immediately, because if not, then
young girls and women, will not only
continue to be victimised by society, but
aLQ – November 2006 27
Influences that taint
HIV prevention messaging
Influences that taint HIV
prevention messaging
Mduduzi Mthembu
C
P also not being able to negotiate safer
sex practices.
Jewkes4 argues in the context of gender
violence that:
In South Africa you have a culture
where men believe that they are sexually
entitled to women. You don’t get rape in
a situation where you don’t get massive
gender inequalities. One of the key
problems in this country is that people
who commit rape don’t think they are
doing anything wrong.
Polygamy, and multiple partner
relationships, are not only culturally accepted
in South Africa, but are also the ‘norm’ in
many communities. This ‘culture’, which
solely exists to ‘prove a man’s status’ and
affirm his masculinity, transcends itself in
many informal ways. It socialises boys and
young men to believe that ‘women are
trophies’, to satisfy their needs and ‘proof of
their manhood’. Girls and young women are
socialised to not only accept, but also respect
this aspect; which leaves females vulnerable,
because they believe that their self-worth, as
socially prescribed, is dependent on their faithfulness to this
relationship, leaving females submissive to the instructions, and
sometimes abusive commands, of their male partners.
Practices, such as ‘ukungenwa’ – a practice where a widowed
woman is required to marry her late husband’s brother to fulfil her
duties as a ‘bought wife’, or alternatively having to have sexual
intercourse with her infertile husband’s brother to further the family
blood line, further compromise a women’s dignity and freedom
of choice.
These, and many other, traditional practices, continue to draw the
gender lines and socialise young women to be ‘susceptive to abusive
men’. These gender inequalities also lead to a situation where
women are often not in a position to make informed choices about
HIV prevention.
Male circumcision
Although a study5, recently conducted in Orange Farm (Gauteng),
found a 60% reduction in new HIV infections amongst males, who had
been circumcised; cultural circumcision remains a high risk practice
for not only new HIV infections, but also HIV and AIDS deaths.
Government’s failure to formalise this cultural practice, and
traditionalist society’s closed ideology to change or adapt, leads to
more and more of 17 to 24 year old Xhosa and Tswana ‘boys’ to be
subjected to a violation of their constitutionally guaranteed right to
dignity, freedoms of choice and expression.6 Young men are socially
expected to go through this ritual, as a right of passage to manhood,
and are subjected to the stigma that people, who are not culturally
circumcised, are not ‘real man’. This type of discrimination takes away
the power from these young men to assess the risks posed by cultural
circumcision to their health and the freedom to choose a practitioner
that they trust.
28 aLQ – November 2006
…55% of South African
rape survivors are
most likely to be young
women between 16 to
25 years of age; and
as high as 34,6% of
rapists are relatives or
intimates of these rape
survivors…
Influences that taint
HIV prevention messaging
…this ‘culture’, which solely exists
to ‘prove a man’s status’ and
affirm his masculinity, …
socialises boys and young men to
believe that ‘women are trophies’,
to satisfy their needs and ‘proof of
their manhood’…
T
Virginity testing
Virginity testing continues to make girls and young women
vulnerable to sexual violence and discriminatory practices. In a
country, where a culture of violence is a dominant feature, and has
spawned attitudes, which are tolerant of sexual violence, girls and
young women are ‘prey to myths’, such as that ‘sleeping with a virgin
can cure HIV’. Not only do girls and young women become clear
targets of rape, as a means of fulfilling ‘curable claims’, but as
proclaimed virgins they are epitomised and celebrated as virtuous and
are appointed husbands, mostly not by choice, who prize women as
‘submissive bought objects’, whose primary role it is to bear children
and take good care of the man. The same man is ‘socially expected’ to
have mistresses on the side, and sometimes, even has the option of
multiple ‘virtuous wives’ at his disposal.
Girls and young women, who do not subscribe to the practice of
virginity testing, or who are ‘found to be non-virgins’, are ridiculed and
often blamed for any sexual violence, which may happen to them. The
practice also makes no recognition of girls and young women, who
were previously sexually assaulted, or even physically active in sport.
Furthermore, it defies their constitutionally guaranteed rights to
equality, dignity, privacy, and to be free from all forms of violence.7
HIV prevention campaigns, such as Lovelife, claim to be ‘lifestyle
brands’ that promote options to propagate choice to young people, and
yet, amidst their unclear messaging, they fail to address social realities,
such as the ‘burdens’ of circumcision and virginity testing, which
affect millions of South African youth. These cultural practices are
often enforced by parents, guardians and the larger community, by
means of ‘moral blackmail’, and play on the need to socially belong
and be accepted. ‘Lifestyle branding’ needs to advocate for making
life-defining practices, such as male circumcision and virginity
testing, an actual choice, and not a predetermined reality, for
young people.
INFLUENCE OF PREJUDICE
AND DISCRIMINATION
Our arrogance, as human beings, leads us to judge and morally
prosecute ‘those’, who are different from ‘us’ and ‘those’, whom we do
not understand. Prominent minority groups in South Africa, who are in
dire need of specific HIV prevention messaging and service delivery,
which equally recognises them as equal citizen, largely feel the impact
of these discriminatory acts.
Migrant labour
South Africa’s culture of a migrant labour
force has created a platform for another
‘high-risk group’. Miners, truck drivers and
impoverished rural dwellers, who seek work
in more urban areas, are known to solicit
commercial sex workers, or to have ‘a string
of mistresses’, in the absence of their life
partners.8 Often, because of persisting gender
inequalities, neither the ‘solicited woman’ nor
the life partner back home are in a position to
negotiate safer sex practices. In addition,
women often do not make use of health
services, because of the moral judgment
placed on them.
Generic HIV and AIDS interventions
seem to have little, if any, impact in migrant
settings and situations of high mobility.
Stigma attached to the mobile population, and
related ‘industries’, needs to be challenged,
and models of intervention that are sensitive
to the circumstances of mobile people need to
be developed.
Lesbian, Gay, Bisexual, Transgendered
and Intersex (LGBTI)
The gay, lesbian, bisexual and
aLQ – November 2006 29
Influences that taint
HIV prevention messaging
…cultural practices
are often enforced by
parents, guardians
and the larger
community, by means
of ‘moral blackmail’,
and play on the need
to socially belong and
be accepted…
I
transgendered communities have faced
much of the blame, discrimination and
prejudice linked with HIV/AIDS.9
The discrimination against LGBTI people
has led to greater risk of, and vulnerability to,
HIV infection. Research presented at the first
African Congress on Sexual Health and
Rights10, showed that HIV and AIDS
prevention and support programmes left
lesbians and gays at greater risk of
contracting HIV, because HIV prevention
focused solely on heterosexuals. This
marginalisation compounds the stigma that
LGBTI people already face. Many LGBTI
people are afraid to, or cannot, use healthcare
services that would either assist to reduce or
deal with HIV infection. Open safer sex
education does not take place, because of
prejudice towards same-sex relationships; and
this creates a distinct disadvantage for
LGBTI people, who are un-open about
their relationships, because of fear of
social prejudices.
Despite evidence of rising HIV
prevalence rates in the LGBTI community11,
South African homosexuals are still finding
themselves excluded from HIV prevention
campaigns and programmes.
CHARTING FORWARD
The existence of HIV and AIDS reminds us that no matter how
different we are, ultimately we are made of the same matter. It forces
us, as a society, to examine the injustices we bestow on our fellow
human beings. For effective HIV and AIDS prevention and
management to take place we need to start addressing socioeconomic
issues, within the framework of the values enshrined in our
constitution, that flawed our society even before the emergence of
this epidemic.
We can do this first by being genuine in our awareness and
educational programmes. We need to bring credibility and testimony to
what we say or teach. How many gender activists do you know that
teach equal gender dynamics by day and live gender stereotypes by
night? How many HIV and AIDS activists and service providers teach
condom use and later are seen pregnant or on treatment for a sexually
transmitted illness? People may be ignorant sometimes, but they are
not stupid and therefore quickly pick up on insincerity. We need to live
what we teach and send out a uniform message.
The success of preventing new HIV infections lies in our ability to
look beyond ourselves and truly start to understand those who are
different from us and those who are motivated by different socioeconomic
factors. We need to implement integrated HIV prevention
messaging that caters for everyone and promotes the values of a
unified nation as celebrated in our Constitution.
FOOTNOTES:
1. ‘War on HIV/AIDS demands a combined assault’. In: Cape Times, Tuesday, October 31 2006.
2. ‘HIV and AIDS and gender-based violence’. (www.unicef.org/southafrica/hiv_aids_729.html)
3. Dempster, C. ‘Rape: silent war on SA women’. (www.news.bbc.co.uk/2/hi/Africa/1909220.stm)
4. Ibid.
5. ‘HIV/AIDS: Things we should know’. (www.southafrica.info/public_services/citizens/health/aids-findings-
101205.htm)
6. Constitution of South Africa, Act 108 of 1996, Section 10, 12, and ??.
7. Constitution of South Africa, Act 108 of 1996, Section 9, 10, 12, and 14.
8. Crush, C. ‘Spaces of Vulnerability: Migration and HIV/AIDS in South Africa. (www.queensu.ca/samp/campresources/
samppublications/policyseries/policy24.htm)
9. ‘Know your rights – Gays, Lesbians, Transgendered People’. AIDS Law Project, South Africa.
(www.alp.org.za)
10. Behind the Mask. ‘Gays neglected in HIV/AIDS campaigns’. (www.mask.org.za)
11. Behind the Mask. ‘Gays neglected in HIV/AIDS campaigns’. (www.mask.org.za)
30 aLQ – November 2006 Influences that taint
HIV prevention messaging
…people may be
ignorant sometimes,
but they are not
stupid and therefore
quickly pick up on
insincerity. We need
to live what we teach
and send out a
uniform message…
Mduduzi Mthembu is the Assistant Editor at the
AIDS Legal Network (ALN). For more information
and/or comments, please contact him on +27 21 447 8435
or at thami@aln.org.za.
M
An awareness of the linkages between poverty, gender inequality and
vulnerability to HIV and AIDS has informed most public discourses on
women and AIDS in Southern Africa. Acknowledging these linkages has
often led policy makers and others, tasked with programming HIV
prevention, to interpret the prevention challenge as an effort in
behavioural change, more specifically as an effort to change women’s
behaviour in order that women may better defend themselves against the
HI virus. The erstwhile belief has long been that if women could become
sufficiently skilled at negotiating safer sex, more active in decision-making
around sex, more confident in expressing their views, more direct with
their feelings and desires, and more able to have their opinions heard and
respected by their partners, then the rapid spread of HIV would be
halted in its pace, if not altogether stopped. Sadly, we chose to ignore the
context of women’s lives in this part of the world, and hence, our HIV
prevention efforts have largely failed.
The Southern African regional AIDS epidemic, now referred to
as a ‘hyper-epidemic’, is still the undisputed epicentre for HIV and
AIDS in the world.2 The high rates of HIV are currently being
sustained by mostly normative, everyday sexual activities between
‘ordinary people’, who have traditionally been thought of as ‘low
risk’. At present, the focus is on discordant couples, who represent
one of the fastest growing pools of new HIV infections in the
region.3 While we might acknowledge that gender inequality plus
poverty is ‘a deadly combination’ anywhere in the world, there can
be no doubt that its specific expression in Southern Africa
contributes to a context that places severe constraints on women’s
and men’s abilities to protect themselves against HIV and AIDS.
There is a need to work towards changing the ‘lethal context’ in
which HIV and AIDS so seamlessly reproduces itself, and one place
to start would be to identify the various shaping influences that have
contributed to the building of this context. There are several major
social inheritances or ‘confluences of influence’ that I believe are
foundational shapers of the current context in which our HIV
prevention interventions are failing. For the sake of discussion let us
focus on three broad streams of influence, those being 1) custom and
tradition, 2) historic processes, and 3) modern trends.
CUSTOM AND TRADITION
Most all societies throughout Southern
Africa are traditionally patrilineal with descent
and affiliation passing along male lines from
father to son. These societies practiced
patrilocal residence at marriage, whereby the
wife was brought to her husband’s father’s
home or ‘kraal’, and marriage was made legal
and socially-recognised, through the payment
of bridewealth (or lobola) by the husband’s
family to the wife’s family. Bridewealth was,
and still is, essentially a transfer of wealth
from one group of men to another in
exchange for jural rights over a particular
woman and her children. Compared to all other
regions in Africa, the eastern and southern
African societies contracted marriage with a
substantially large bridewealth, in some cases
up to 11 heads of cattle. In some west African
matrilineal societies for example, the value of
bridewealth was relatively low, with several
bolts of cloth and bottles of expensive liquor,
or even a few months of bride-service (where
a man worked for his in-laws), being
sufficient to legitimate a marriage. The
patrilineal/patrilocal social arrangement
provided a supportive environment for what is
popularly termed ‘patriarchy’, the system of
power imbalances that favour men. Such a
system promoted social values that upheld
male privilege and prescribed roles for
women that emphasised loyalty, humility,
silence and ‘respect’. In such societies, the
marriage bond between husband and wife was
expected to take second place to the primary
bonds of affiliation between brothers, or what
scholars term ‘agnatic kin’. Here, the man’s
family of orientation (that in which he was
aLQ – November 2006 31
What Prevents Prevention?
What Prevents Prevention?
An overview of the sociological and gender
context of HIV prevention in Southern Africa1
Suzanne Leclerc-Madlala
W
born) rather than his family of procreation
(that which he makes with his wife) was
expected to be the family which held a man’s
main loyalties and allegiances.
With the transfer of the relatively large
bridewealth a man and his family secured
many rights over their wives and children.
Brideweath, along with the custom of the
‘levirate’ or wife-inheritance, also functioned
to give women and children a large degree of
social security in traditional societies. While
bridewealth transfer is still part-and-parcel of
modern marriage rituals throughout the
sub-region, to some extent it represents an
additional yoke that contributes to women’s
vulnerability to HIV and AIDS. Today,
reference to bridewealth is frequently made to
justify men’s control over women and
children, and to justify unsafe, condomless
sex in marriage. It is also not uncommon for
both men and women to justify both domestic
and sexual violence on the grounds that a man
has paid bridewealth. I would suggest that the
bridewealth tradition also provides cultural
reference for transactional sex, which,
beyond being a means of survival for poor
women, studies suggest that the exchange of
gifts, favours or money for sex is a normative
expectation in most non-married relationships
throughout the region. The popular
stereotypical ‘sugar-daddy’ is not a role
reserved for a few rich men. Less well-off
men can and do impress and attract girlfriends with their offers of cool
drink, biscuits, rides in a car, or simple make-up. In one study
conducted in rural Tanzania, a small bar of soap or a packet of peanuts
was enough to get a man one round of sex.4
Polygyny, when it could be afforded, was the ideal traditional
marriage arrangement in all indigenous Southern African societies.
One could argue that the current pervasive sexual networking patterns
of concurrent multiple partnerships for men represent a modern
evolution of polygyny. A common scenario in the region today is one
that might be described as ‘monogamy de juror, polygyny de facto’. A
man may be legally married to one wife, but that does not preclude the
possibility of one or several concurrent partnerships outside of
marriage. Men’s infidelity is to a large extent accepted and expected. I
would also suggest that the tradition of polygyny helps to lend
legitimacy to another of today’s common sexual partnering practices in
the region, which is intergenerational sex. Where a man was allowed
to have as many wives as he could afford, the most common pattern of
wife acquisition was to take progressively younger and younger wives.
Throughout the region today where wealthy Kings continue to have
multiple wives, it is not unusual that wife number four or five is a young
woman from the King’s granddaughter’s generation. The tradition of
polygyny provides for both a cultural reference for intergenerational
sexual liaisons and helps to socially legitimise its practice.
HISTORIC PROCESSES
Colonialism and its later manifestation of apartheid in varying
degrees throughout the Southern African region have profoundly
affected the gender and social contexts of people’s lives. The introduction
of Christianity with its new prescriptions for ‘good and evil’,
achieving salvation and life-after-death for example, created much
discordance with traditional values and ideologies. For one thing, all
forms of pre-marital sex were considered sinful, and traditional ways
of regulating the sexual activities of youth (i.e. various practices of
non-penetrative, intra-crural sex) were considered to be morally
unacceptable and stigmatised. The whole institutionalised system of
elder sisters, ‘aunties’, age-mates and elders, who guided youth in their
development towards adulthood was undermined. Disruptions in sexual
socialisation were part of a much wider disruption in the communal
socialisation of children more generally. The breakdown of traditional
nurturance structures have not been adequately replaced by more
western approaches to child rearing and methods of intergenerational
communication on sex. The very limited communication on issues of
sexuality in most African homes, as revealed in studies throughout the
Southern Africa region, is leaving our youth extremely vulnerable,
very ill-informed and poorly equipped to successfully negotiate their
sexual debuts and subsequent sexual relationships.
Christianity, together with the introduction of the cash economy,
32 aLQ – November 2006
…one could argue
that the current
pervasive sexual
networking patterns
of concurrent multiple
partnerships for
men represent a
modern evolution
of polygyny. …
What Prevents Prevention?
T labour migration and mobility placed many new stresses on family
and communal life. Some studies reveal how bridewealth became
increasingly more expensive over time, with the result being that
marriage rates started to decrease while the rates of casual sexual
partnerships, ‘informal’ wives and illegitimate children started to
increase. Men’s traditional role as ‘heads of households’ was
undermined, as men moved to the cities and women were left behind to
manage almost everything. Men became increasingly marginal to
household processes and increasingly dependent on women. The
‘dethronement’ of men that some have argued to be a significant
contributor to the current high rates of gender-based violence, child abuse
and HIV and AIDS in the region, had its origins back in the colonial era.5
Colonialism has also played a big part in helping to establish and
normalise the structural violence that is pervasive in our part of the
world today. Sexual violence appears to be endemic in the region. One
study estimated that about 30% of adults in Southern Africa have
experienced forced-sex before the age of 18.6 Perhaps more than
anything else the ghost of our colonial heritage and its step-child, the
apartheid system, affects the region’s engagement with HIV and AIDS
by placing fundamental constraints on our ability to think and act
when it comes to changing sexual behaviour to protect ourselves
against the virus. It is almost certain, in any public debate or national
conversation on HIV and AIDS, that the spectre of colonial racist
representations of African people, as diseased and hyper-sexed, will be
raised. That ‘ugly ghost’ still lingers, and it causes people to refrain
from a close examination or discussion of issues related to sex that is
vital to our response to HIV and AIDS. This alone presents a huge
challenge to the crafting of contextually-specific and closely tailored
programming on HIV prevention in the region.
MODERN TRENDS
While urbanisation has been underway since colonial times,
urbanisation today is not so readily linked to employment. Increasingly
people are coming to cities and towns and not finding jobs. This
creates a situation where frustration, hunger and poverty fester.
Throughout the region, it is not only men who move to cities, but it is
also women, alone or with children, who
come to seek a better life. Studies indicate
that the gap between rich and poor is increasing
in many places, and in many instances
prosperity and poverty are existing in close
proximity and both are highly visible. A
person living in a shack need not hop onto a
plane to observe the manner in which the rich
live. Most need only to look across the road.
There does not appear to be much that
constrains poor women from using their
bodies to obtain some of the trappings of
wealth or to partake in some of the fruits of
‘the good life’. Unfortunately, there also doesn’t
seem to be much that constrains men with
money from exploiting the situation, and in so
doing create a near-perfect context for
transactional and intergenerational sex.
The demise of apartheid in South Africa
and the embracing of neo-liberal policies have
opened the flood-gates for the promotion of
consumer values. With it has come the
creation of new needs and wants that have far
out-paced the creation of new means to meet
those needs and wants. In many homes, the
television is used much like the radio, on
during most of the day, providing background
conversation, drama, comedy and violence to
accompany the routines of domestic life.
Foreign media imagery, with its portrayal of
modern life as fast, easy, prosperous and
glamorous, helps to propel young women into
transactional or intergenerational liaisons
where their abilities to negotiate safer sex, and
the incentives to do so, are limited. I would
argue that in some ways the media also
contributes to a sense of resignation amongst
parents. Studies reveal that many parents in
the region feel they have lost authority over
their children. The images that are being
conveyed via the mass media are so new, so
different and so advanced from anything that
the older generation has known before, that it
causes parents to feel irrelevant and
inadequate as people who are supposed to
guide and advise the youth. In the context of
our burgeoning AIDS hyper-epidemic, we
aLQ – November 2006 33
…it is almost certain, in any public
debate or national conversation
on HIV and AIDS, that the spectre
of colonial racist representations
of African people, as diseased and
hyper-sexed, will be raised…
What Prevents Prevention?
F simply cannot afford to have parents
relinquishing their role as parents.
While the changing roles, rights and
expectations of women are hallmarks of
modernity everywhere in the world, the
emerging gender regimes have to be reconciled
at the local level. Modern legislation to
promote gender equality is in place in most
Southern African countries. The need to
empower women in order that they might have
greater control over their lives, financially and
physically, is viewed as a matter of urgency in
the context of our regional response to HIV and
AIDS. Yet, we haven’t given enough thought to
the consequences of women’s empowerment in
a context in which men’s authority in the
household and in society has been
progressively undermined over the course of
several generations. I would posit that many, if
not most, men in Southern Africa consider the
promotion of gender equality and expectations
of a ‘new gender order’ to be a further
continuance of their own ‘dethronement’. For
men it is a simple equation: women’s
empowerment equals men’s disempowerment.
One can only wonder about how much of our
excessively high rates of rape, sexual assault,
child molestation and all other manner of
violation against women and their children, is
directly or indirectly related to some sort of
collective psychic trauma suffered by men, who perceive the very essence
of their manhood to be constantly and continually under siege.
CONCLUSION
For HIV prevention to be effective in Southern Africa it needs to
take better cognisance of the many influences that have informed, and
continue to inform, the local gender and sociological contexts that give
meaning to peoples’ lives. The real challenge is to effectively address
the lethal context in which poverty, socio-cultural norms and
expectations, gender and HIV and AIDS intersect and interact to
catalyse the spread of HIV. Policy and programmatic approaches that
aim to challenge and transform norms and expectations are required
for the creation of a less violent and more gender-equitable
environment in which HIV prevention is possible. Ways need to be
found that empower men to resist and challenge those social scripts
that condone an aggressive masculinity that is uncaring, uncooperative,
unfaithful and ultimately unchangeable. At the same time, these efforts
need to affirm new constructions of manhood and assist men to at the
least accept, if not embrace, a new gender order.
The sociological and gender work that is required to make a real
impact on HIV and AIDS in the region is nothing short of substantial.
It means replacing many old habits of thought and behaviour that have
developed over long periods of time, and replacing them with new
thoughts and behaviours that are often perceived as being counter to
much of which is held sacred and dear in the name of culture or tradition.
Yet, the cost of maintaining socio-cultural norms and expectations that
give men a false sense of power and contribute to the incredible
vulnerability of women is literally killing us all. High-risk notions of
masculinity that propel the growth of HIV and AIDS must be put firmly
on a social transformational agenda. If we are serious about preventing
the future growth of HIV and AIDS in the region, we have little choice,
but to try to change the way in which we currently conceive, construct
and express our gendered social selves.
FOOTNOTES:
1. This article is based on a paper presented at the International AIDS Conference held in Toronto 2006.
2. Wilson, D. 2006. HIV Epidemiology: A Review of Recent Trends and Lessons. Paper presented at UNAIDS
Special Meeting on Behavioural Change and HIV. Geneva, 13 September.
3. O’Reilley, K. 2006. Counseling, Testing, Discordancy. Paper presented at Expert Meeting on HIV Prevention
in High-Prevalence Countries in Southern Africa. Maseru, 10-12 May.
4. Plummer, M. et al. 2004. ‘A bit more truthful’: The validity of adolescent sexual behaviour data collected in
rural northern Tanzania using five methods. Sexually Transmitted Infections, 80:49-56.
5. For more discussion on men’s historic dis-empowerment see Rebombo, D. 2006. ‘Dethroned men’ …an
underlying factor fuelling the pandemic? In: ALQ, June 2006.
6. This estimated is based on a SADC regional study conducted by CIETAfrica and presented in a paper entitled
Gender-Based Violence by N. Andersson. Presented at Expert Meeting on HIV Prevention in High-Prevalence
Countries in Southern Africa. Maseru, 10-12 May, 2006.
34 aLQ – November 2006
Suzanne Leclerc-Madlala is the Head of Anthropology at the
Howard College Campus at the University of KwaZulu Natal.
For more information and/or comments, please contact her on
+27 31 260 2387 or at leclercmadlals@ukzn.ac.za.
…the cost of
maintaining sociocultural
norms and
expectations that give
men a false sense of
power and contribute
to the incredible
vulnerability of
women is literally
killing us all…
What Prevents Prevention?
F
aLQ – November 2006 35
For almost a quarter of a century, we have
experienced the collective and personal
tragedy that is AIDS. 25 years of fear, 25
years of illness, 25 years of death and 25
years of courage. [Richard Pratt, 2003]
What seemed as a simple disease, in our
laboratories, when it started, has today plunged the
world into a crisis. Children have been orphaned;
grandparents are raising children for the second
time, due to deaths and illness of their infected
parents. The challenge to establish what should be
done to turn the pandemic around remains. In our
efforts to respond to the pandemic, various questions
need to be raised, including whether or not we are
doing enough to prevent further HIV infection;
whether or not the HIV approaches and strategies in
place are indeed effective – or are we wasting time?
The ‘lion is in the house’, and we need to do all
what it takes to turn the tide against pandemic. And,
right now, the greatest instrument at our disposal is
‘prevention’. But, how do we prevent HIV
transmission; and when and why must we prevent
the spread of HIV? We are losing our sisters and
brothers to this pandemic, not because the pandemic
is ‘a warrior’, as so many people depict it, but
because we seem to give in to denial. We succumb
to the disease, because of cultural and religious
barriers, which perpetuate the spread of HIV. We
succumb, due to our attitudes and behaviours. How
can we effectively prevent HIV infection, if there are
still people who think HIV is ‘a disease for
prostitutes’, a ‘curse from the creator’? One night,
attending a night vigil, I heard the preacher say to the
congregants: ‘people are dying like flies, due to ill
behaviours, prostitution, and I won’t go and preach,
if asked to bury a person who died of AIDS, since it
is an abomination against God’.
If we continuously hear such remarks from public
figures, where are we going as a nation in the
response to the pandemic? A woman, delivering a
testimony in church, talked about all the good things
God did for her. In her closing remarks, she was
talking about how young people are behaving, and
the things young people do, which are abominations
to God. She concluded by saying: ‘AIDS would not
get me. Why? Because HIV is fair and only people
who choose to have sex before marriages are
susceptible to the disease’.
While it is good for young people not to rush into
sexual intercourse, before attaining negotiation
powers and being able to make informed decisions,
we must be very cautious in passing these
judgements. We seem to turn a blind eye on the real
issue, which is that sex is sex, married or unmarried,
young or old and that engaging in unprotected sex is
the greatest risk of HIV infection.
The above issues highlight how reality
exacerbates the challenges we are facing when
dealing with HIV, and how our own attitudes and
beliefs ‘nurture’ the pandemic in our community. If
we say people who are infected with the HI virus are
‘those who choose to have it’, then what are we
saying about children, who do not even know about
sex, but who are raped every day on account of
perpetrators believing that their HIV status will be
cured. And what are we saying about the faithful
woman, who is infected with HIV, since she could not
negotiate conditions of sex, including condom use, in
her marriage, due to culture and the patriarchal
society we are living in? How can we progress in our
HIV prevention efforts, when women have to ‘prove
The challenges facing HIV
prevention programmes
Sipho Fakude
Provincial view
36 aLQ – November 2006
their worthiness’, through giving birth and expanding
the family? And when questioning this, one is told
that it is ‘our culture’.
One other factor that exacerbates the challenge
is the economic dependency, with mostly women
falling ‘victims’ to this. Many women are exploited on
account of man being the sole ‘breadwinner’ and,
subsequently, women are left with no power to
negotiate. Most people involved in HIV and AIDS
activities are mostly women, who are expected to
instil their learning on their families and homes. Often
this initiated ‘process of change’ poses a serious
challenge to women, since women become ‘targets’
and are vulnerable. Klouda [as quoted by van der
Vliet, 1992:797] argues that:
…the critical factors in controlling the
epidemic do not lie among people who make
choices, but rather among those who cannot
– especially the poorest, least powerful, most
vulnerable and most isolated.
A family man once raped his child and when the
mother discovered the rape, she laid a charge
against the man. As a result, she became very
‘unpopular’ in the family. Everyone said she should
not have laid charges; rather have the family deal
with the matter internally. With incidences like these,
it is really challenging to prevent the spread of HIV
and AIDS in our communities.
One also wonders how we assist girl children,
who resort to ‘prostitution’, due to unbearable living
conditions, with HIV prevention. The fact that girl
children have to use their bodies to get the next slice
of bread, places them at very high risk of HIV
infection. This is but one of the examples indicating
that HIV prevention strategies should be diverse and
also embrace socio-economic aspects, such as
special needs of child-headed households and
poverty alleviation programmes.
In a forum of young people from different sectors,
looking at why there are still new HIV infections on a
daily basis, even though there are information about
HIV everywhere, participants stated that:
…people who are dangerous are the
activists [HIV and AIDS], because they end
up thinking they are immune to the virus.
When I am involved in an affair for three
months with the person, I begin to trust the
person without knowing our HIV status and
then, we forget to use a condom – this is
ignorance.
A female participant suggested that:
…men should advocate for a massive supply
of female condoms, because it can be worn
8 hours prior to sexual intercourse, while the
male condom needs a man to be erect,
before it can fit, and some men get carried
away and regret afterwards.
While this may sound like a workable suggestion,
one has to ask how likely is this to happen,
considering the patriarchal society we live in?
We also need to look at the psychological impact
of the writings and speeches we used to hear at the
inception of the pandemic. This is not an attempt to
justify, but instead a reminder to be mindful of the
impact of sentences, such as ‘beware AIDS kills’
(‘umashayabhuqe ubhubhane’) presenting fear and
stigma. And sitting on the bench waiting for one’s
turn in the counselling room, one remembers all the
many times one heard of the message that ‘AIDS
kills’. While some will leave, some will stay and get
tested for HIV, but will not come back for the test
results. We heard so many people saying ‘it is better
not to know, than to know, that I am infected’.
Goldstein [1989:84] argues that ‘many illnesses
transform their victims into a stigmatised class,
but AIDS is the first epidemic to take stigmatized
classes and makes them victims’.
We have to ask ourselves how many people we
have driven to suicide, by not accepting their HIV
status, rejecting them from their own land, family and
friends. Stigma is a silent killer and an obstacle to HIV
prevention. Why should people test for HIV, when we
just want to ‘gamble’ with their HIV status and not
assisting them? An illustration of this is also the
limited number of males in the HIV testing rows,
since many men use ‘proxy testing’ – ‘my wife
Provincial view
aLQ – November 2006 37
gave birth to a healthy child and, therefore, I know
I am not infected’. Needless to say, this perception
perpetuates the further spread of HIV in
communities.
A further challenge is the HIV messages
conveyed to the community, through billboards,
pamphlets and newsletters. In some areas these
billboards are not even written in the local language
for people to understand and this is how we
sometimes miss the point of HIV messages.
How are we going to prevent the spread of HIV
and AIDS, when it is still difficult for people to test for
HIV, due to the stigma that we have not addressed
thus far? In many instances, people have been
diagnosed with HIV and their confidentiality not
observed by the service personnel.
In addition, there is a lack of a proper referral
system from the hospital to the community carers.
Pratt [2003] argues:
Many patients with late symptomatic disease
(AIDS) will require community-nursing
services at some point in their illness.
Successful community nursing care is in part
dependent upon good discharged planning
procedures when patients are in hospital.
The hospitals are often not aware of the
environment, where the patient is going after being
discharged from the hospital. The people who are
close to this environment are the home-based
carers. However, there is no adequate mechanism of
referring the patient from one level of care to
the other.
There is also the further burden, carried by homebased
carers, who have to care for a patient without
the necessary materials, such as gloves, linen, etc, to
support and care for the patient and to minimise their
own risk of HIV infection. The question is, who looks
after, and is responsible for, the well-being of homebased
carers? What is needed, is sufficient supply of
material, as well as provision of ongoing support,
including psychological support, so that homebased
carers can improve and sustain the service.
The reality is, however, that home-based carers help
people and often use their own limited resources to
do so.
These are some of the realities, which present
serious challenges to the effectiveness of HIV
prevention strategies. And, until we address these
issues, HIV strategies and programmes will be
stagnant. We have to embrace the set of diverse
actors in responding to the HIV and AIDS
pandemics. And more importantly, we need to
acknowledge that our behaviours need to change,
and that we first need to deal with our own attitudes,
beliefs and behaviours, before we can go to the
community and roll-out HIV prevention strategies
and programmes.
REFERENCES
Goldstein, R. 1989. ‘AIDS and the Social
Contract’. In: Carter, E. & Watney, S. (Eds.) Taking
Liberties. London: Serpent’s Tail.
Pratt, J. 2003. HIV and AIDS: A foundation for nursing
and healthcare practice. Fifth Edition. Edward
Arnold.
Van der Vliet, V. 1996. The politics of AIDS.
London: Bowerdean.
Sipho Fakude is the Project Coordinator at the
Phaphamani Home-Based Care Centre. For further
information and/or comments, please contact him
on +27 13 796 1624 or at sipho@phaphamani.com.
Provincial view
38 aLQ – November 2006 Regional view
Behaviour Change
Communication Strategies
as a means to help young people avoid HIV and AIDS1
Kent Klindera
By nature, ‘youth’ is a period in a person’s life to explore.
Young people begin developing their own identity and values,
moving away from that of their parents and family. They often
are influenced by their peers, the media and other outside
experiences. Another aspect of this transition is puberty, the
time when young peoples’ bodies begin transforming into
adults. This period in life is full of excitement and challenges.
Unfortunately, very little guidance is offered by parents,
families, community leaders, and other adults to assist youth
through this transition, especially related to understanding
their sexuality and reproduction. Too often, sexual exploration
during this transition can place young people at risk of HIV
infection. No where is this more evident than in Southern
Africa, where currently, in some countries, roughly one-third of
the 15-24 year olds are infected with HIV.
For years, programme planners and policy makers have
been developing strategies to assist young people in adopting
healthy behaviours related to HIV and AIDS. At stake are not
only individual lives, but family and community structures, as
well as entire national economies, as young people often make
up the economic powerhouse of emerging economies – the
workforce. In low socio-economic areas, youth often provide
supplemental income to families. In some cases, they may be
the primary breadwinners for households. Thus, powerful
interventions are needed to slow the destruction of HIV and
AIDS amongst young people.
Fortunately, youth have the capacity to overcome these
challenges. With creativity and science, programme planners
and policymakers can develop programmes that assist youth
through this transition. The most successful interventions
harness the energy and drive of youth and combine it with theoretical
and science-based approaches to develop healthy
behaviours. The following document is a summary of
theoretical approaches and effective strategies for working
with youth, specifically in Southern Africa.2
WHAT DOES THEORY SAY ABOUT
ADOPTING HEALTHY BEHAVIOURS?
For many young people, as is true with
most people, adopting healthy behaviours
can prove difficult. For example, the very
essence of a youthful identity is a feeling of
inevitability – that youth have future lives
ahead and nothing is going to stop them.
Research suggests that for youth, the
connection between decisions made
today do not always translate into
consequences in the future. Thus,
effective programmes need to take this
factor, among others, into consideration.
The adoption of healthy behaviours is
not a simple process of providing
information to people and then watching
them change. Years of research has
proven that knowledge alone will not
assist young people in adopting the
behaviours needed to prevent the spread
of HIV and AIDS. Additional factors play a
role in assisting the youth.
The following is a list of components
that summarises what young people need
to adopt healthy behaviours.3
• Information about the need to be
healthy
• Motivation to be healthy
• Skills to initiate and sustain behaviour
• Belief that the change is possible
and positive
• Community Norms that support
the behaviour
aLQ – November 2006 39
Regional view
• Supportive Environment to enable
the behaviour
• Policy Structures supporting the
behaviour
Programme planners and policy
makers need to take this theoretical
framework into consideration in
developing programmes.
INFORMATION is vital for young
people to make healthy decisions.
Information about HIV and AIDS, other
STIs and unwanted pregnancy is needed
to get attention of youth of the need for
safer behaviours. Research indicates that
throughout Southern Africa, many young
people lack basic information regarding
HIV and AIDS. One study in Botswana
showed that two thirds of students in their
final year of secondary school could ‘tell if
someone had HIV’.4
Unfortunately, for those programmes
that are offering information, many fail to
go beyond information strategies. These
programmes inform youth and expect
them to adopt healthy behaviours on
their own.
Additionally, information related to
sexual health can be difficult for some
programmes to confront. Taboos around
discussing issues of sex and sexuality
make it difficult for programme
implementers to bring up the subject. As
well, some programmes do not provide
adequate and full information
(e.g. abstinence-only sexuality education).
These programmes are based on the
assumption that informing youth about
sexual intercourse, including the use of
condoms, will encourage youth to
practice more sexual behaviour. Research
throughout the world suggests, however,
that providing youth with full accurate
information related to sexual health, and
allowing them to make their own
decisions, is the most successful strategy. Sexual behaviour
rates are not increased, however, safer sexual practices, such as
condom use, are.5
Young people need MOTIVATION to want to be healthy.
What motivates young people? For years, researchers have
experimented with various strategies, identifying various
successes in the process. By far, the most successful motivator
is a bright future. Youth want to feel that their future will be
positive, with economic attainment and a healthy family life,
among other things. Thus, for this example, to motivate youth,
programmes need to help young people begin thinking about
ways in which their decisions today may affect that bright future.
Messages should focus on how becoming infected with HIV, or
to have an unwanted pregnancy, may disrupt a young person’s
plans of achieving their goals.
Additional motivators include:
• self reliance – being able to take care of oneself
• activism – being linked to a process of societal change
• feeling valued – linkage to adults that value the young person
• authenticity – living a life that seeks truths
• identity – formulating a unique identity
Young people need LIFE-SKILLS-BASED HIV AND
AIDS EDUCATION. Ask any young person in Southern Africa
and they will say how tired they are of hearing about HIV and
AIDS, the transmission routes, the means to protect oneself.
Many have the information, however, they often do not know
what to do with this information.
In most projects, programme planners and policy makers
identify a message, post it around, hand out information about
HIV and AIDS and expect youth to comply. Researchers6 have
found, however, that life skills-based HIV and AIDS education is
a key factor in assisting youth adopting healthy behaviours.
Thus, programmes need to add a skills-building component –
taking the information and motivation, and turning it into a
concrete action young people can take to protect themselves.
The researchers also indicate that these skills-building sessions
need to be reinforced over time. A one-hour session is not
enough – rather 10-20 hours is the norm.
For example, communication is a key skill needed to navigate the
tricky world of romantic relationships. Young women and men can
pressure each other into sex when one partner may not be ready.
Young people need skills-building sessions, including role playing,
that allow youth to explore the skills needed to communicate
assertively, as well as developing good listening skills.7
40 aLQ – November 2006
Young people need to believe that they have the ability
to change themselves – SELF EFFICACY. Many young
people are raised in environments whereby they do not think they
have ‘the ability’ to perform certain functions. Various factors,
such as sexism, racism, ageism, and xenophobia disempower
youth, creating a basis by which youth do not feel confident that
they can perform the function necessary to protect themselves
from HIV.8 For example, young women are culturally biased
towards deferring to men in decision-making. When it comes to
deciding if a couple should use a condom, if the man does not
want to, a woman with low self-esteem can be hesitant to
demand that a condom is used.
To address self-efficacy, programmes should adopt
empowerment messages, helping young people recognise that
they have the ability to adopt safer behaviours. Effective
programmes also need to create an empowering environment to
assist young people in recognising that they can control their
actions and make changes.
COMMUNITY NORMS related to healthy behaviours is
an important component of a theoretical approach. Young
people are influenced greatly by their peers. Part of the process
of adolescent development is youth creating their own identity –
separate from their parents and family. Therefore, friends and
other peers become extremely important in the values and
behaviours young people adopt.
Research9 indicates that if young people perceive their peers
to be acting out certain behaviour, they will comply. It does not
even have to be true, as long as youth ‘perceive’ their peers to
be doing so. Thus, peer education is an excellent strategy,
because it helps build set community norms related to sexual
health. For example, if a project is promoting abstinence and
peer educators promote a message that abstinence is cool, it is
much more likely to be adopted.
Young people need SUPPORTIVE ENVIRONMENTS for
healthy behaviours. In addition to peers, other parts of a young
person’s environment need to be supportive. If a young person’s
environment is not supportive of healthy behaviours, it is much
more difficult for them to adopt the behaviour.10 For example, if a
programme is promoting condom use, and, attitudes amongst
teachers, faith leaders, health professionals and parents are
against youth using condoms, it will be very difficult for young
people to obtain condoms and feel comfortable using them.
This environment includes school, parents, family, faith
community, health services and community in general. Thus,
programmes should seek out ways to
include the entire community in an
intervention. One example may be to
have a message that is targeted at young
people, but also their parents/families and
communities. A coordinated message,
which is reinforced from various sectors
of a young person’s life, is a definite boost
to success of a project.
POLICY STRUCTURES need to be
in place to promote sexual health. From
governments to organisations, policies
are essential to assist young people in
adopting healthy behaviours. Too often,
well intentioned, but restrictive, policies
exist that inhibit young people’s sexual
health. For example, if a young person
needs their parents’ consent to get tested
for HIV, they may be much more unlikely
to get tested, as many do not necessarily
want to inform their parents of their
sexual behaviour.
Programme planners need to work in
coalition, to review policies related to
young people’s sexual heath and to
ensure that these policies are not working
against the goals and objectives of the
project. If there are restrictive policies,
programmes should include components
to address such policies. Youth leaders
and adult professionals must promote
policies that respect the rights of both
youth and parents, and promote
sexual health.
WHAT ARE BEST PRACTICE
INTERVENTIONS?
So, what works in reaching young
people? The following is a list of evidencebased
strategies that have proven
successful in assisting young people in
adapting healthy behaviours to minimise
the risk of HIV infection. There are two
basic components that are evident
Regional view
aLQ – November 2006 41
throughout all successful programmes,
followed by a list of specific strategies that
can be used in conjunction with each
other or by themselves.11
WHAT ARE THE BASIC
COMPONENTS NEEDED FOR
EVERY PROGRAMME?
Involve Youth: Effective programmes
need to be based in realism; addressing
the true needs of youth. Successful
interventions have attained this realism by
using a most basic strategy: involving the
target audience. Indeed, many young
people have the knowledge and skills to
be a part of programme design,
development, implementation and
evaluation. Young people are not seeking
to take over what adult professionals are
doing, they do, however, seek to partner
with adults to ensure a realistic intervention.
Successful programmes begin with a
sense of ‘youth-adult partnership’.
Involving youth is easier said than
done. Various factors, such as traditional
culture’s view of the role of young people,
can hamper such efforts. Basic things,
such as logistics, can make youth-adult
partnerships difficult. Too often, youth are
not available during business hours (on
account of school or other commitments)
and adult professionals often have
families to care for after hours. A simple
action, such as finding time to hold a
meeting between youth and adults can
prove difficult.
Tailor Programmes for Specific
Types of Youth: Youth populations are
diverse. In any country there are rural and
urban youth, male and female, rich and
poor, in school and out of school, to name
a few of the differences. Interventions for
one population are not necessarily
transferable to other populations. For
example, messages for young women about communicating
assertively with potential sexual partners will be received
differently by young men. Thus, effective behaviour change
communication strategies tailor programmes for the unique
circumstances of differing young people. Comprehensive
programmes may offer specific sub-projects for specific target
groups. For example, a programme may have a gender
empowerment project that works separately with young women
and men to meet the specific needs of the differing genders.
These differences need to be examined during the planning,
implementation and evaluation of programmes. Programme
planners and policy makers need to recognise the specific needs
of some young people that are in higher risk situations.
Specifically, some youth are forced into commercial sex work
and need specific interventions to assist them. Similarly, other
groups of youth in higher risk situations include women/girls in
general (based on gender norms that deny women their rights),
out-of-school youth, homeless youth, migrating youth, and
same-sex attracted youth (e.g. homosexual or bisexual), to
name a few.
Address Gender Inequalities and Stigma: Data indicates
that young women are adversely infected and affected by HIV,
compared to young men. Thus, effective programmes need to
address gender inequalities. For example, programmes need to
engage in efforts to improve girls’ and young women’s
opportunities to obtain education and skills training. In addition,
boys and young men need to be engaged in processes to
redefine ‘masculinity’. Along this same line, boys and young men
need to be given skills to communicate more equally and
openly with romantic partners, and taught that violence against
women and coercive sexual behaviour is not a characteristic
of ’real men’.
In a similar light, stigma, related to people infected and
affected by HIV and AIDS, increases the risk for youth. Research
indicates the main causes of HIV-related stigma are incomplete
knowledge, fears of death and disease, sexual norms and the
lack of recognition of stigma.12 Thus, programme planners need
to continue to raise awareness about the reality of HIV and AIDS
transmission, and correcting myths about how HIV can be
spread (e.g. that HIV is not spread by sharing eating utensils). In
addition, programmes need to encourage community-wide
dialogues related to sensitive subjects, such as sexuality.
Promote Specific Messages about Small, Doable
Actions: If youth are asked to adopt behaviour, the message
Regional view
42 aLQ – November 2006 Regional view
must be clear, realistic and concise. For example, ‘Play it Safe’ is
a clear message about what needs to be done; however, it
needs to be followed up with clear directions. ‘Abstain, Be
Faithful, Condomise (ABC)’ is a clear message that reaches
across a spectrum of youth, and is realistic. These messages
need to be reinforced throughout the intervention using various
forms of communication. Specific mediums include:
• Small print (e.g. posters, pamphlets, stickers, cards)
• Large print (e.g. billboards)
• Mass Media (e.g. newspapers, magazines, radio, television)
Link to Comprehensive HIV and AIDS Programmes:
Effective HIV and AIDS related behavioural change
communication programmes for youth are also linked to
comprehensive programmes. Thus, programmes offer a
continuum of care between HIV prevention, testing, treatment
and care. For example, if a project is promoting condom use for
sexually active youth, the programme should have linkages to
clinical services, meeting the needs of young people who want
to test for HIV and/or potentially receive treatment, if testing
positive for the virus.
WHAT ARE SPECIFIC STRATEGIES THAT SHOULD BE
COMBINED TO WORK?
Youth Development Approaches: Too often, youth-specific
HIV and AIDS interventions focus on immediate aspects of HIV
prevention (e.g. abstain, be faithful, condomise). However, young
people have different needs related to their risks for HIV. Ask any
group of youth what their needs are and most will say that it is
economic attainment (e.g. good job) or healthy romantic
relationships (e.g. boyfriend/girlfriend). Thus, successful
programmes integrate ‘youth development’ approaches that
indirectly address HIV and AIDS issues, focusing on building the
self-efficacy of the individual, as opposed to the direct HIV and
AIDS messages. For example, many successful HIV and AIDS
behaviour change programmes contain a ‘livelihood’ component,
offering youth a job skill, such as computer literacy. Thus, youth
are drawn to the programme, because they will be offered skills
that will assist in getting a job. While young people are getting
important information, motivation and skills related to HIV and
AIDS, they also are gaining skills to achieve economic attainment.
Life skills-based HIV and AIDS education is an extension of a
‘youth development approach’. This form of education assist
young people in developing ‘skills for life’ that have direct linkages
to HIV prevention. These skills include value clarification, goal
setting, communication, relationshipbuilding,
decision making, to name a few.
Successful HIV and AIDS related
behavioural change communication
programmes typically employ such life
skills approaches.
The main disadvantages of a ‘youth
development’ approach are costs, as
livelihood initiatives, focusing on economic
attainment, are expensive. Most NGOs
promoting sexual health are not setup to
offer non-health related services. This
type of approach may require hiring staff
with diverse expertise, as well as investing
in capital expenditures. Youth
development approaches can also shift
an organisation’s mission, as these
approaches demand the offering of new
types of services. To meet this need,
organisations may consider partnering
with other NGOs that are already offering
such youth development approaches.
There are numerous types of ‘youth
development’ approaches to HIV and
AIDS behaviour change interventions.
Popular examples include, amongst
others, mentoring (establishing
meaningful one-on-one relationships
between an adult and a youth); youth
leadership programmes (offering skillsbuilding
and empowerment programmes
for young people empowering young
people to be leaders); and involving
young people in advocacy efforts for
social change.
Edutainment: Traditional discourse in
African societies used drama as a tool to
inform and involve communities in making
decisions about the well-being of the
community and individuals. In modern
times, music and entertainment is still a
powerful message bearer for HIV and
AIDS interventions. Powered by an ‘MTV
generation’, young people are more likely
aLQ – November 2006 43
to tune into healthy behaviours, if the
message is delivered in an entertaining
way. Working through entertainers, such
as local musicians, often can turn
negative messages into positive ones;
highlighting young people’s desire to do
well in the world. Thus, successful
programmes have been able to engage
music, drama, poetry, and the visual
arts to entertain young people while
being educated.
Disadvantages of Edutainment
approaches include the costs of hiring
performers, as well as costs involved in
stages, lighting and sound systems. As
well, Edutainment strategies can lack
depth, as young people are more
entertained, than they are educated.
Successful programmes recognise that
performance artists need to be trained to
be HIV and AIDS educators, adding a new
dimension to their talent as performers.
Mass Media: Related to
Edutainment, mass media offers a means
to reach a large number of young people
at one time. Although, the message is not
as deep as one on one conversation,
sustaining community norms and creating
enabling environments are enhanced with
messages repeated through mass media,
such as radio, television, billboards, and
websites. In the modern age, young
people are often far more technologically
and media savvy, than their parents’
generation, and, hence, reaching youth
through mass media is appropriate.13
There are several disadvantages to
this approach, however, primarily related
to costs. For example, renting space on
billboards, radio or television is extremely
expensive, and that is after expenditure
for production of the advertisements. In
using mass media channels, programme
implementers also need to be careful that
they are using messages, which are coordinated or linked to
local, national and international campaigns already occurring.
The public can be confused when several mass media
campaigns are operating at the same time. Finally, such visibility
for a campaign can also alert and ignite opposition to efforts
around sexual health and youth. Therefore, programme planners
need to be prepared to handle potential criticism.
Peer Education: Often used as a strategy for young people,
peer education is still one of the most effective ways to build
motivation and create community norms related to HIV and AIDS
interventions. Peer education embodies social learning theory
about positive social norms. Thus, if the goal of the project is to
delay the onset of sexual debut, to have younger adolescents
talk to other younger adolescents about how they are abstaining
is an effective strategy.
In addition to reaching a target audience, peer education
programmes also have impact on the peer educators
themselves. These young educators are trained to help others
adopt healthy behaviours, which also can be applied to their own
behaviour. Thus, programme implementers should look at
outcomes at two levels, measuring the impact the peer
education programme has on the audience, as well as the
impact on the peer educators themselves.
There are several disadvantages to using peer educators.
Firstly, heavy emphasis must be placed on training peer
educators. This training often needs to be repeated on an
annual basis, as young people are often in transition and not
available from year to year. Volunteer peer education
programmes also have to compete with various other
opportunities for young people, especially when young people
are in need of income, as they may need to provide economic
resources for their household.
School-based Programmes: Working within school-based
settings is an efficient way of reaching a large group of youth.
Formal school settings offer a ready audience, as well as
teaching structures to roll out a sustainable programme. For
example, a life skills-based HIV and AIDS curriculum can be
developed to be taught in a school setting. Teachers can be
trained to implement the programme and it can be sustained
for years.
To the contrary, school-based programmes can be limiting in
reaching youth, especially those in higher risk situations.
School-based approaches are best for reaching ‘mainstream’
youth; however, they should be offered in parallel process with
Regional view
44 aLQ – November 2006
programmes to reach out-of-school youth. In addition, school
administrators and bureaucracies can limit the message of a
campaign, as the school is often responsible to the community,
who may be more conservative than programme planners.
Youth Friendly Health Services: Many behavioural change
communication programmes for youth ask youth to seek out
sexual and reproductive services (e.g. VCT, PMTCT,
contraceptive services). Unfortunately, youth often have negative
experiences, when interacting with adult service providers,
based on attitudes. Namely, many adult service providers hold
attitudes against pre-martial sex. Thus, for example, if a project
is promoting HIV testing and a young person has a difficult
experience at the testing site, or is denied a condom, how is the
project really going to get the young person to listen again?
Training needs to be offered to reproductive and sexual
health service providers on developing youth-friendly HIV and
AIDS services. The training needs to focus on the delivery of
quality services, and assisting the providers in changing their
attitudes related to young people’s sexuality, or at least holding
their attitudes to themselves. In addition, many successful
programmes that employ youth-friendly services ask youth to
define ‘youth friendly’ themselves, and then work with the
providers to ensure such a setting is developed. In some cases,
youth serve on advisory boards, are hired to work in the clinics,
or peer education programmes are run out of the health facility.
Disadvantages to this approach include the fact that young
people do not often feel the need to attend health service
facilities, as they are invisible and never going to be sick. As well,
health services facilities can often have limited resources, in
terms of both human and financial. Asking health service
providers to add additional activities to their workload may
prove impossible.
CONCLUSION
These are numerous examples of effective HIV and AIDSrelated
youth-specific behavioural change communication
interventions. Many are multi-faceted programmes, working to
reach youth with a consistent message, through numerous ways
and channels. While this overview is by no means a
comprehensive list of programmes, it is, however, highlighting
promising theory-based strategies and model programmes that
have shown success. There is always potential for additional
innovative programming to be developed and documented. In
addition, with the energy and insight that young people themselves
bring to such programme development
and implementation, there will always be
additional ground-breaking interventions
created to lessen the impact of HIV and
AIDS on individuals, families, communities,
and countries in the SADC region.
FOOTNOTES:
1. This article is based on an Issue Brief prepared for the
SADC/EU Cross Border Initiative on Youth and HIV/AIDS. The
findings were drawn from a review of various behaviour change
communication strategies and programmes in the SADC region,
including Dzalobana Bosele Arts Festival (Botswana), Nchanda
ni Nchanda (Malawi), Trendsetters (Zambia), and an initiative
by the Zimbabwe National Family Planning Council promoting
sexual responsibility amongst youth (Zimbabwe).
2. This document is designed for HIV and AIDS-related
programme planners at non-governmental organisations (NGOs)
and government agencies (both adult professional and youth
leaders), as well as policymakers.
3. Green, L. & Kreuter, M. 1991. Health Promotion and
Planning: An Educational and Environmental Approach.
Mountain View, CA, USA: Mayfield Publishing.
4. UNAIDS. 2004. At the Crossroads: Accelerating Youth Access
to HIV/AIDS Interventions. UNAIDS Interagency Task Team on
Young People. See also: UNICEF. 2004. Young People Speak
Out. Meeting our Rights to HIV Prevention and Care: Access
for All. Prepared for the XV International AIDS Conference,
Bangkok July 2004.
5. Alford, S., Cheetham, N. & Hauser, D. 2005. Science and
Success in Developing Countries: Holistic Programs that Work
to Prevent Teen Pregnancy, HIV and Sexually Transmitted
Infections. Advocates for Youth, January 2005.
6. UNICEF. 2004. Young People Speak Out. Meeting our Rights
to HIV Prevention and Care: Access for All. Prepared for the
XV International AIDS Conference, Bangkok July 2004. See
also: Green, L. & Kreuter, M. 1991. Health Promotion and
Planning: An Educational and Environmental Approach.
Mountain View, CA, USA: Mayfield Publishing.
7. UNICEF. 2004. Young People Speak Out. Meeting our
Rights to HIV Prevention and Care: Access for All. Prepared
for the XV International AIDS Conference, Bangkok July 2004.
8. Green, L. & Kreuter, M. 1991. Health Promotion and
Planning: An Educational and Environmental Approach.
Mountain View, CA, USA: Mayfield Publishing.
9. Ibid.
10. Ibid.
11. Speizer, I et al. 2003. ‘The Effectiveness of Adolescent
Reproductive Health Interventions in Developing Countries: A
Review of the Evidence’. In: Journal of Adolescent Health,
33:324-348.
12. Academy for Educational Development (AED)/LINKAGES.
2003. Behavior Change Communication. Experience
Linkages Results. See also: Academy for Educational
Development (AED)/Change Project. 2003. Understanding and
Challenging HIV Stigma: Toolkit for Action.
13. Palmer, A. 2002. Reaching Youth Worldwide. John
Hopkins University Center for Communication Programs
(JHU/CCP).
Kent Klindera is the Senior Technical
Advisor on Gender and Youth at
EngenderHealth. For more information
and/or comments, please contact
him on +27 72 709 1534 or at
KKlindera@engenderhealth.org.
Regional view
aLQ – November 2006 45
My input is going to take a slightly different approach
in that I am going to use a story line to highlight the
sexual and reproductive health needs of people living
with HIV and AIDS. My story line is basically bent
around the typical dilemma faced by people living with
HIV and AIDS, concerning their fertility desires and
sexual and reproductive health rights and needs. As
persons living with HIV and AIDS, we need to strongly
affirm that we are still alive and each living being has a
right to some level of comfort, compassion, and love.
Due to our HIV status, we have been ‘condemned’,
more often than not, to a life in solitude and loneliness,
which makes it very difficult for us to live healthy and
comfortable lives with HIV or AIDS. Our fertility desires,
including our sexual and reproductive health needs are
always assumed, sometimes misconstrued or outright
misinterpreted, depending on the context in which the
conversation around these issues is taking place.
As persons living with HIV and AIDS, we do have
sexual and reproductive health needs and rights. We
do have fertility desires that should normally be taken
into consideration, whether at policy level, in
programme design, and in service provision, especially
in those services that target, or claim to target,
people living with HIV and AIDS. The interesting
question that normally arises has always been – when
people are HIV positive – what needs do they have
and why do they have sexual and fertility desires if they
are already living with the virus? If they have any needs,
as I want to presume they have, and if one wants to
believe that these needs are part and parcel of the
rights of people living with HIV and AIDS, then these
needs must be met, and in the comprehensive
manner that fulfils the entire continuum of care and
needs for people, both women and men, living with
HIV. How and when we can demand these rights and
services is a question that we must address, if we
want to deliver adequate services.
Reports from people living with HIV and AIDS affirm
that their sexual desires and needs are hardly taken
into consideration by service providers. Sexual,
reproductive health and HIV and AIDS programmes
and services have often failed to take into
consideration the unique needs and desires of people
living with HIV and AIDS. A lot of focus has been
previously placed, and is still being placed, on issues
of maternal health, especially issues around the
prevention of mother to child transmission, normally at
the expense of the full range of sexual and
reproductive health needs of people living with HIV
and AIDS.
It is difficult for me, sometimes, to even access the
most basic things – condoms. Access to condoms is
normally construed that, I ought not to infect other
people by continuing to have sex and, thus, condom
education, which we need, is always put aside.
Instead of condom education, and, instead of being
provided with information, people living with HIV and
AIDS are normally castigated and condemned. Much
of the counselling is to ensure that people living with
HIV stop being sexually active – the expectation that
they are HIV positive and are not supposed to have
sex, has always taken the front line thoughts.
The big question is: do HIV and AIDS make us less
human than others? Besides access to treatment and
to antiretroviral therapy and the drugs, we strongly
believe that a positive mental outlook and enjoyment
of life is an important factor in extending the lifespan of
making a point
Do HIV and AIDS make us
less human than others…?
Fertility desires and sexual and reproductive
health needs of people living with HIV1
Dorothy Odhiambo
comment: making a point
46 aLQ – November 2006
a person living with the virus. When we seek a safe,
satisfactory, responsible, and a healthy sexual life, is
that asking for too much? Can that be delivered
against a context that is considerate and
compassionate to the needs of persons living with HIV
and AIDS? In order to fulfil, or to express, our sexual
desires, we need information; we need education on
safe and protective methods of engaging in sex. Yet,
service providers hardly think about such needs and
they often concentrate their education either on
abstinence or other methodologies, and, at best,
education on condom use, which sometimes does
not apply to women living with HIV in most part of
the world.
This approach, as we all know, and as evidence is now
showing, presents a dilemma to women, because
women have very little control and they cannot even
enforce when, how and with whom to have sex. Many
sexually active people living with HIV and AIDS need
dual protection, yet, service providers only think about
the easiest way and that is condoms – and we know
that condoms have had considerable failure rates in
preventing pregnancy. Providers are likely to discuss
contraceptives, but very little information is given on
contraceptives that are appropriate and right for
people living with HIV and AIDS.
We are all aware now that increased access to
antiretrovirals has also led to improved quality of life of
people living with HIV and AIDS, resulting in a positive
shift in their sexuality and fertility desires. However, we
have also noted that the majority of persons living with
HIV and AIDS still have no access to antiretrovirals and
even people, who have access, have to contend with
antiretroviral or treatment services that are noncomprehensive
and do not address fertility and sexual
health needs of people on treatment. How can
programmes be comprehensive enough to start
thinking about related issues, especially those issues
that touch on the sexual and reproductive health of
persons living with HIV and AIDS? At what level should
national treatment programmes consider sexual
reproductive health needs of their clients? What are
the benefits, if there are any at all, in bringing these
services to a one-stop point? How and when do we
insist, as people living with HIV and AIDS, that these
services are made comprehensive enough for us not
to shuttle from one point to another, looking for
different services in 10 places on the same day.
Because at the end of the day, I am only one person
and yet, I am expected to go to these different places
for different services so as to ensure that I get all the
care I need.
Is this practical? We have seen programmes that
make people living with HIV and AIDS, and especially
women, go from service point to service point. At point
A, I go and pick up my antiretrovirals. Then, I am
expected to go another distance to point B to pick up
my treatment for my opportunistic infections. At point
C, I am supposed to go and talk to a family planning
service provider to see if there are any services for me
there. At point D, if I have a child, I have to look for
services to ensure that my child is healthy – and all
these must take place in the same day. Surely, are we
being fair when we design programmes that make us
shuttle like this?
Many of us are, at times, made to withdraw from sex.
Not because of our diagnosis, but because of the loss
of a partner, the loss of sexual desire, the fear of reinfection,
or the feeling of guilt, due to the judgemental
attitudes of service providers towards people living
with HIV and AIDS. This makes it very difficult to
pursue a safe and satisfactory sexual life.
Normally, due to the nature of the programmes,
whether they are HIV and AIDS programmes or
sexual and reproductive health programmes and
services, sexually transmitted diseases often go
undiagnosed, especially in people living with HIV and
AIDS, because it is presumed that they are not
supposed to have sex and, therefore, they are
supposed to be free from most of these infections. Yet,
more often than not, we are supposed to grapple with
some of these infections, without much attention or
much support.
Now, look at the possible fertility desires. We are
always discouraged to have children after diagnosis,
reasoned that we are likely to infect our children. This
is totally in disregard to the fact that we have, at times,
very little control over our fertility and decisions
comment: making a point
aLQ – November 2006 47
comment: making a point
whether or not to have children. In addition, this is also
not based on other factors that come into play, for
example, the community and family pressure to have
children, despite one’s HIV status.
When such pressure build up, women living with HIV
and AIDS are often left alone to grapple with these
dilemmas and to make decisions with no prior
information on how to prevent the transmission of the
virus from mother to child. Current statistics are now
showing that only 10% of women, especially in Sub-
Saharan Africa, are able to have the full knowledge of,
and the access to treatment, so as to ensure that they
prevent transmission of the virus to their children.
Where prevention of mother to child transmission
(PMTCT) programmes have taken off, the cost is
always prohibitive, especially if there is no donor
funding support, and this normally excludes many
women, who have the desire to have children, who are
free of HIV and AIDS. Many people living with HIV and
AIDS have complained of inadequate information from
service providers to enable them to make informed
decisions about their fertility from service providers.
The question is who do we turn to, when service
providers who are expected to address our needs and
to provide the critical support that is needed by us, are
judgemental and have negative attitudes towards
women living with HIV and AIDS, who still desire to
have children? Access to ARVs, in some countries in
Sub-Saharan Africa, is pegged on whether or not the
woman agrees to be sterilised. This is a violation of
human rights of women living with HIV and AIDS. Who
do we turn to – to help us address these issues? How
do we deal with service providers, who insist that to
access antiretrovirals, or to be put on treatment,
women have to be sterilised? More often than not, we
are coerced into decisions and left with no option, but
to go with what service providers propose, and what
they think is best for us.
On the other hand, termination of a planned
pregnancy is considered illegal in so many countries.
Access to safe and legal termination is still a big issue
for women living with HIV and AIDS. Emergency
contraceptives are still out of reach for these women
and yet, sometimes women living with HIV and AIDS
require such services. Access to HIV testing is
another issue that we have to grapple with and, in so
many contexts in Africa; women in their reproductive
age have no access to HIV testing services. So,
women get pregnant and then they learn during their
pregnancy that they are already infected with HIV –
and this presents a dilemma. Furthermore, women
living with HIV and AIDS need information on safe
contraceptives and information on how these
contraceptives may react to other medications that
they take, for example, antiretrovirals and other
treatments for opportunistic infections.
Looking at policy issues, we need, urgently and as a
priority, dialogue on how to develop and improve on
policies at national level that are explicit on inclusion of
sexual and reproductive health needs and rights of
people living with HIV and AIDS. Meaningful
engagement of people living with HIV and AIDS is
critical for national programmes.
In conclusion, I would want to say that it is high time
we start acting differently. We need committed
leadership and ownership in facing the reality and
adversity of our sexual and reproductive health needs.
We need to close the gap between what we say and
what we do. We need accountability and timelines,
strict timelines, from stakeholders and organisations
on how, when, and from whom we can demand and
expect action on our sexual and reproductive health
needs. And this action, if it comes to being at all, must
include us, as people living with HIV and AIDS.
FOOTNOTES:
1. This article is based on a paper presented at the 2006 International AIDS Conference
in Toronto, Canada.
Dorothy Odhiambo is the Senior Regional HIV/AIDS
Partnership Officer at the International Federation of
Red Cross and Red Crescent Societies, based in
Nairobi. For more information and/or comments,
please contact her on +254 2 2835000 or at
dorothy.odhiambo@ifrc.org.
aLQ – November 2006 48
DTP: MELISSA SMITH • PRINTED BY FA PRINT
New Publication
This publication has been made possible through the assistance of
the Joint Oxfam HIV/AIDS Programme (JOHAP) managed by Oxfam Australia
…prevailing discriminatory attitudes and beliefs create a
situation in which women are at greater risk of violence
and HIV infection…
Looking at an holistic approach in
response to the links between
gender violence and HIV and AIDS,
the AIDS Legal Network (ALN) and
the KZN Network on Violence
Against Women combined
knowledge and resources to
develop, write and publish a
resource and training manual on
Gender Violence and HIV & AIDS.
A potpourri of concepts and
realities of gender, gender violence
and HIV, a gendered look at
prevention, treatment, support and
care (of both violence and HIV and
AIDS); ‘spiced up’ with relevant
legislation (including fundamental rights and freedoms) –
this is what trainers and ‘wannabee trainers’, can look
forward to in this resource and training manual.
Ever wondered why there is little joy to be had for women
while celebrating ten years of constitutional guarantees of
dignity, equality, non-discrimination and freedom? Ever
wondered why we don’t seem to be ‘able’ to enjoy our
‘freedom’? Free to equally and fully enjoy all rights and
freedoms; free to make choices, to make informed
decisions about one’s own body; free to choose whether
or not to have sex, with whom, when and where; free to
choose whether or not to test for HIV and to disclose
one’s HIV status; free to enjoy respect and protection
from all forms of violence, be it at home, the bedroom, the
workplace, or the many places where we want to access
services for our own protection. Ever wondered why
some human beings are at the forefront of decisionmaking
while others remain to be
‘voiceless’, vulnerable and violated?
Ever wondered why ‘some are more
equal than others’ just seems to be
the way it is…? What needs to be
explored, done and challenged to
create a society which is free of
violence and free of HIV, is what this
publication is all about.
The manual aims to give insights,
and to provide valuable information
and resources to everyone,
including trainers, facilitators,
educators, who feel compelled to
‘stop wondering and do something’
about the linked pandemics of
gender violence, HIV and AIDS and stigma and
discrimination of the ‘other’. The ‘book’ is a tool; a tool
to train and educate, to build and strengthen capacity of
self and others, to give information and deepen
knowledge, to promote an understanding of the links,
and to contribute to change of the environments
fostering the pandemics.
The resource and training manual will be officially
launched during the 16 Days of Activism for no violence
against women and children. For more information on the
manual and/or how to get a copy, please contact us at
campaign@aln.org.za.
Gender Violence & HIV
and AIDS
…ever wondered why some human beings are at the forefront of
decision-making while others remain to be ‘voiceless’,
vulnerable and violated? Ever wondered why
‘some are more equal than others’ just seems to be the way it is…?