Project Description

It is in light of the seemingly persistent violation of rights, marginalisation and exclusion of people and groups of people that this issue of the ALQ focuses on stigma and discrimination based on, and in the context of, HIV and AIDS. The various articles in this issue examine the meaning, causes and understanding of stigma and discrimination, as well as various realities of stigma and discrimination as experienced by people living with HVI and AIDS, by young people, by lesbian and gay people, as well as by prisoners.

Stigma: The extreme end of
a discrimination continuum1
Many people are calling urgently for laws and policies to curtail or prevent HIV and AIDS
stigma. This is a call for changes in structures. It is also a useless exercise, until such time
as we examine the roots of stigma, and understand its very nature. Then we can build
structures to support the understandings and mechanisms that alleviate stigma.
What exactly is stigma anyway? For the
sake of this discussion, we will define
stigma as a behaviour or law/policy that
unfairly and negatively impacts upon the
rights, life and opportunities of a person
actually living with HIV or ill with AIDS; a
person associated (affected) with someone
living with HIV or AIDS (e.g., family and
friends); a person, perceived to be infected
with HIV or to have AIDS; or a person
perceived to be at risk of HIV infection or
AIDS illnesses.
To distinguish this form of discrimination
from other types, such as gender or racial
discrimination, it needs to be motivated primarily
by the perpetuator (person or policy) of
the stigma to have knowledge or a perception
(true or false) that the other person is infected
or affected by HIV or AIDS. HIV and AIDS
stigma is thus, essentially discrimination
based upon HIV status. In other words, it is
not stigma if, for example, you lose your job,
because you did not do your job properly. It is,
however, stigma if you did your job properly,
but got fired, because your boss discovered
you are living with HIV.
Is HIV and AIDS stigma different from
any other form of discrimination? This is a
difficult question. Stigma is not exactly the
same as discrimination, at least in terms of
connotation. Stigma has an additional connotation
to discrimination, namely that of strong
emotional rejection, over and above structural
inequality. We would hazard a guess that
‘stigma’ is characterised by overt fear, whereas
‘discrimination’ is not always overt. We,
therefore, propose that stigma is the extreme
end of a discrimination continuum.
Why does stigma exist?
Core questions we need to ask are: What
causes people to behave in a stigmatising
manner? What causes people not to change
stigmatising behaviour, even when they have
knowledge about this? Why are people treating
their loved ones, colleagues, employees
and friends in such inhumane ways? Why is
stigma so widespread, regardless of social,
educational or economic strata? How do the
ones infected contribute to the perpetuation
of stigma?
The answer is simple, at least conceptually.
At the core of any behaviour one will find a
belief (or a series of beliefs) that causes
individuals or groups to behave in a specific
manner. We need to strip away these
beliefs to their core, before we can
effectively counteract stigma.
The nature of unconscious beliefs
Important considerations include that
In this issue: 1 Stigma: The extreme end of a
discrimination continuum 2 Editorial
10 Homophobia is supposed to have no
place 14 I am not defined by HIV 15 New
rescources 16 Has age-related stigma and
discrimination become acceptable and
justifiable? 20 Prisoners have rights too…
22 Regional view 23 Learners are positive
24 Provincial view 27 Comment 32 Feedback
David Patient and Neil Orr
aLQ – June 2005 1
A Publication of the AIDS Legal Network June 2005
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PO Box 13834, Mowbray 7705,
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Tel: +27 21 447-8435
Fax: +27 21 447-9946
aLQ – June 2005 2 Editorial
IIt is in light of the seemingly persistent violation of
rights, marginalisation and exclusion of people and
groups of people that this issue of the ALQ focuses
on stigma and discrimination based on, and in the
context of, HIV and AIDS. The various articles in this
issue examine the meaning, causes and understanding
of stigma and discrimination, as well as the various
realities of stigma and discrimination as experienced
by people living with HIV and AIDS, by young
people, by lesbian and gay people, as well as by
prisoners. This issue also introduces two new integral
features to the ALQ, namely a ‘regional view’
and a ‘provincial view’. The former introduces the
HIV and AIDS realities and challenges of Namibia
and the latter explores some of the experiences and
challenges unique to the Limpopo province.
In this issue, David Patient and Neil Orr explore
the theory and meaning, as well as the causes of
stigma in the context of HIV and AIDS. Analysing
core questions as to why stigma exists, how it manifests
itself in beliefs and behaviours, and some of
the fundamental beliefs leading to stigma and suggesting
measures, as to challenge and counter these
very same beliefs, the article argues that as long as
the core beliefs, leading to, and justifying the occurrence
of, stigma are not challenged, stigma cannot,
and will not, be addressed and thus, will continue to
Acknowledging prevailing homophobia faced by
lesbian and gay people, Nonhlanhla Mkhize looks at
stigma and discrimination as experienced by LGBT
people in various areas of their lives, as well as from
various service providers, such as healthcare and
police. She argues, that stigma and discrimination
not only limit the extent to which information,
resources and services can be accessed, but also
that as long as these injustices are not addressed,
human rights will remain but a dream for most LGBT
The extent to which stigma affects the behaviour of
people living with HIV is looked at by Jason
Wessenaar. He explores the effects of stigma and subsequent
internalised stigma on behaviour, including
sexual behaviour, and argues that as long as issues of
self-image/worth are not an integral part of education
and awareness programmes, many people will remain
vulnerable to, and at risk of HIV infection.
Exploring the concept of ‘everyone’, Johanna
Kehler examines questions as to how discrimination
on the basis of age leads to the violation of rights, to
stigmatisation and to blaming young people for the
extent to which they are at risk of, and are vulnerable
to, HIV infection. She argues that without
addressing, or even acknowledging, the status quo
of stigma and discrimination based on age, young
people who are vulnerable to not only HIV and AIDS,
but also to the violation of their rights, will become
an accepted and justifiable reality.
The extent to which HIV and AIDS exacerbates
the situation of human rights violation within South
African prisons is discussed by Umesh Raga.
Examining various constitutional and legislative provisions,
as well as various judgements of the courts
affirming the rights of prisoners, he argues that while
the legislation is in place, it is the inadequate application
and implementation that perpetuate the violation
of prisoners’ rights.
Limpopo, with its two unique realities of ‘beauty’,
the ‘Garden of Eden’ and the ‘beast’, the lived HIV
and AIDS realities, is introduced by Cecile
Manhaeve. Exploring the various realities of
Limpopo, she examines the challenges of accessing,
and adhering to, ARVs and argues, that behaviour
needs to change as much as people need to get
continued on page 4
S (a) beliefs can be conscious or unconscious (e.g., socialised
norms). Many beliefs are not conscious;
(b) there may be beliefs that conflict or contradict each other;
and that
(c) the relative ‘stress’ of a situation influences the extent to
which conscious beliefs are put aside, allowing unconscious beliefs
to prevail (i.e., the strongest belief will win).
More often than not, beliefs, especially unconscious beliefs, are
presented as facts. For example, a sexist statement such as ‘men are
stronger than women’ is defended as an ‘obvious fact’. Defence of
such beliefs include ‘it’s normal’, ‘everybody knows this’, ‘we’ve
always done it this way’, ‘it’s my culture’, and ‘the Bible says so’. In
other words, there is often little individualised thought or reasoning
to support some types of belief; they are often merely accepted by
the individual or group through socialisation processes. As a result,
most people would not really be able to tell the real reasons as to
why they are discriminating against someone, as they have not
really consciously thought about it.
It is not possible for us to influence any long-term changes in
discriminatory behaviour, unless we have the courage to challenge
people’s core beliefs. It is neither a comfortable – nor popular –
process. All too often, we are so busy worrying that we might offend
a community’s sensibilities that we do communities a disservice,
simply because we are too scared to take the risk of challenging
these beliefs. If we do not challenge these core beliefs, we have
failed in doing what needs to be done to serve our communities.
It is also important to keep in mind that many beliefs have never
been discussed, even during socialisation, and are absorbed through
modelling and behavioural processes. For example, a child may
learn how to deal with anger through violence by observation, not
through rational discussion of the pros and cons of such behaviour.
Therefore, when we say ‘challenging beliefs’, we mean talking
about them, bringing them into conscious awareness and giving
them words, so that they can be expressed and examined.
This unconscious aspect of many deep-seated beliefs behind
discrimination makes it problematic in terms of rational ‘education
and awareness’ processes. Not only is the individual unconscious of
some of these beliefs, she/he may also have no words to express
these beliefs.
Stigma as a utilitarian survival strategy
There is also a category of beliefs concerning survival issues that
are deeply entrenched. This concerns the functional reasons for
discrimination. An example is how groups approach and respond to
major threats to their survival. The unspoken belief is to do whatever
is necessary, including the sacrifice of the weak, to ensure the
survival of the group as a whole. This is the ‘utilitarian’ approach
(i.e., that the greater good for the greater
number of people sometimes requires
sacrifice of a minority).
Studying social phenomena:
The danger of bias
Human behaviour is not random. Instead,
it has a structure and a reason,
instigated and directed by beliefs of various
degrees of strength and conscious awareness.
Just as the medical fraternity believes that an
accurate and in-depth knowledge of the virus
and the immune system will allow us to
effectively counter HIV through vaccines and
anti-HIV treatments, so does a rational social
scientist believes that an accurate and indepth
understanding of people’s beliefs will
allow us to understand and modify behaviour
so as to reduce vulnerability to infection, and
to behave fairly towards the ones already
infected with HIV.
The difference between a medical scientist
and a social scientist is that a medical
scientist studies something (e.g., a cell or a
virus) that can be placed outside of her or
himself, on a slide under a microscope. She
or he studies something external. In contrast,
a social scientist studies something of
which she or he is part. This is the problem.
A social scientist cannot separate her or
himself from what is being studied. She or
he has beliefs too, which may – and usually
do – strongly determine not only where we
look (and not look), but also how to view it,
what is ‘right’ and ‘wrong’, and so forth.
Social scientists, whether they like it or
not, are just as powerfully affected by their
socialisation and survival-based beliefs,
which create phenomena such as ‘blind
spots’ (i.e., literally not seeing something,
because it contradicts fundamental personal
beliefs). Another common pitfall is the
intellectual justification of something
according to a specific pre-existing belief
system (i.e., we try to fit the facts into what
we would like to believe).
Stigma can neither be understood as a
simple nor as a largely conscious behaviour.
If we examine and seek to understand the
beliefs behind stigma, we stand a chance of
doing something about it. Just like any other
apparently irrational behaviour, at the core
of stigma is a set of beliefs, presented as
facts, creating discriminatory behaviour.
So, let us examine some of the possible
unconscious (or conscious) beliefs that
could explain the stigmatisation of the ones
infected with HIV.
aLQ – June 2005 3
Stigma: The extreme end of
a discrimination continuum
Just like any other apparently
irrational behaviour,
at the core of stigma is a set of
beliefs, presented as facts,
creating discriminatory behaviour.
involved for the ‘right’ reasons, to ensure the adequate
implementation, and maximum benefit of,
treatment programmes.
Damoline Muruko introduces HIV and AIDS realities
in Namibia. Looking at the interrelation of
social, economic and cultural factors that largely
define individual choices about sexual relationships,
she argues that it is Namibia’s gender inequality that
forms the basis for women’s greater vulnerability to
HIV and AIDS and that only a ‘gendered’ approach
to HIV and AIDS education, awareness and prevention
carries the potential to challenge and transform
the power dynamics leading to women’s greater vulnerability
to HIV and AIDS.
Shamim Meer is ‘making a point’ about ‘mainstreaming’
and questioning whether or not the concept
in its entirety has been understood. Analysing
various confusions, misunderstandings, as well as
resistance to, and fear of ‘mainstreaming’, she
argues that it is the failure to address the underlying
gender imbalances and women’s subordination that
leads to a situation in which ‘mainstreaming’ will
continue to bypass its cause, which is to advance
gender equality.
Exploring the meaning and various realities of
stigma and discrimination in the context of HIV and
AIDS, the recurring theme seems to be that stigma
and discrimination manifest itself not only in attitudes
and behaviours, but also in language; that
stigmatising and discriminatory attitudes and
behaviours are often determined by core beliefs and
norms at a conscious and unconscious level; that
stigmatising and discriminatory attitudes and
behaviours are not only based on, and reinforced by,
existing societal prejudices, as well as existing
imbalances and injustices, but also support and
reinforce the very same; that stigma and discrimination
occur in all spheres of society; and that this
reality prevails, despite constitutional and human
rights provisions guaranteeing equality and human
dignity for everyone. In addition, stigma and discrimination
appear to have become largely societal
acceptable and justifiable, since stigmatising and
discriminating against the ‘other’ seem to ‘conform’
and ‘adhere’ to the societal perceptions and core
beliefs of what is, and what is not, ‘acceptable’
and/or ‘appropriate’ behaviour.
Recognising the need to address stigma and
discrimination in its various forms and realities, the
question as to the how seems to have various
answers, ranging from information dissemination,
education and training to improving one’s selfimage/
worth and challenging the status quo.
However, the one approach common to all, is the dire
need to not only challenge, but change the very same
core beliefs of ‘us’ and ‘them’ explaining and often
justifying the occurrence of stigma and discrimination.
And if we are to agree that stigma is the extreme end
of a discrimination continuum and that stigma is fundamentally
based on core beliefs and norms, then we
will have to agree that without challenging the very
same core beliefs and norms, as ‘unchallengeable’ as
they might seem, we will not be in the position to adequately
address stigma and discrimination. In other
words, if we are to accept core beliefs and norms to
be the ‘problem’, then the ‘problem’ of stigma and
discrimination does not seem to be the one that needs
addressing and/or challenging. Thus, recognising the
need to address stigma and discrimination seems to
be the ‘easy’ part, as compared to the practical implementation
of addressing and challenging the ‘actual
problem’, the core beliefs, people’s core beliefs,
everyone’s core beliefs.
And while this might seem ‘impossible’ to some,
the fact remains that as long as we are not addressing
and challenging the causes and ‘roots’ of stigma
and discrimination, fundamental human rights and
freedoms will remain but a dream for most of us…
4 aLQ – June 2005 Editorial
continued from page 2
Belief 1: ‘If you have HIV you are going to die, so I will not
invest time or resources in you’.
This means withdrawal of support from the ones who are perceived as
no longer able to contribute to the survival of the group. This is the
simple outcome of a group survival strategy, which has been a survival
strategy used throughout human history.
Many years ago, there were reports that clinics in certain parts of
Zimbabwe were told not to provide any treatment for the ones infected
with HIV, including the setting of a broken bone. The reason was that
this would be a waste of scarce resources. Whether this report was true
or a myth is irrelevant. What is relevant is that this report illustrates
behaviour based upon a belief that is quite fundamental and widespread
in situations where resources are limited. We have heard this belief
expressed in different ways by a wide range of people, including
business people, the devoutly religious, politicians, and general public.
No doubt, this belief causes outrage, as it should. However, this outrage
needs to be tempered with the recognition that the rejection of the ones
infected is no different from other – more personal – behaviours. We
have all done something similar at some point in our lives, based upon
an assessment of whether or not the other person will contribute to our
lives in the future.
For example, when a friend announces that she or he is leaving
town, and moving to another city, many people start to withdraw immediately,
prior to the actual departure. Emotional withdrawal, some say
this happens to reduce the pain of loss, is common to all societies.
However, when physical resources are limited, this effect is magnified,
and expressed in more hostile rejecting behaviour too, such as expelling
family members from the home. Is this any different, or is it a matter
of degree?
There are two sub-beliefs in this behaviour, pertaining to HIV stigma:
• It is believed, based upon what has been said in media and
otherwise, that everyone who is infected with HIV is going to die.
In other words, she or he is going to leave.
• she or he is going to get sick at some point, which means that
scarce resources are going to be used, with no ‘cure’ to justify the
use of these scarce resources.
How do we counter this? Well, for one thing, we need to start to be
a little more careful of how we tell people about the dangers of HIV and
AIDS. For two decades we have been drumming the same ‘death and
fear’ message into communities, and we are surprised at the stigma that
emerges? We try to motivate through fear – terrifying all and sundry
with HIV and AIDS – and we don’t understand why people respond
with ‘irrational’ rejection to the ones infected?
So what do we do? How do we counter this basic (and functional,
from a raw survival perspective) belief?
Counter-active measures
We suggest two strategies, both of which we have been applying with
great success in Mozambique, in our Positive Living programme.
Measure 1: Instead of using fear as the primary message
and motivator, focus upon the effects of HIV and AIDS (or
malaria, poverty, etc) on a desirable future, both by the
individual and community
What we mean by that is that few people have any sense of future
beyond the immediate and short-term. For
many people, dealing with the problems of
today is infinitely more real and urgent than
some unseen threat that apparently can kill
you sometime in the distant future.
We utilise methods where people become
aware of long-term future-related goals –
which we call the Future Dream – that are
then emotionally energised through a simple
process. Our view is that life is only protected
– and respected – when it is valued.
Furthermore, life is only valued when my life
is believed to be moving towards something
desirable, pleasurable, fulfilling. We have
found that when we do this process first,
before HIV and AIDS education and awareness,
prevention methods suddenly have
relevance and genuine meaning to the individual.
Then the ABC options/choices make
sense to the individual, as HIV and AIDS
literally stand in the way of the desired future.
We utilise exactly the same process for
people living with HIV, as they are no
different from anyone else in believing that
they have no future. If we are to teach the ones
infected how to live with the virus successfully,
we need to ensure that they also believe that
they have a future, and that there are good
things still to come, that it is still possible to
live a good life.
It is often assumed that the ones infected
will do anything to stay healthy, when in reality
this is not true. Many just ‘don’t bother’;
because they believe there is no point. The
same rationale applies to HIV testing: What do
I stand to gain (except anxiety), if I get tested?
Without a good reason (i.e., improved quality
aLQ – June 2005 5
Stigma: The extreme end of
a discrimination continuum
Our view is that
life is only protected –
and respected –
when it is valued.
Furthermore, life is
only valued when my
life is believed to be
moving towards
something desirable,
pleasurable, fulfilling.
children, who do not yet have the capacity to contribute. Therefore,
one aspect of reducing stigma is for PLWHA’s to earn the respect of
others through engaging in a productive life, and not wallowing in
‘sufferer’ or ‘victim’ sympathy-seeking roles.
Measure 2: Focus upon the possibility of living with HIV,
versus dying from AIDS
This sounds very similar to the previous item, namely focusing upon a
desired future. However, there is a slight – but important – difference in
emphasis. In the previous item, the focus was upon working towards a
life that is desired, whether that life is five years or twenty years. In
other words, its focus is the quality of life, regardless of the quantity of
life. In the second item, the focus is upon quantity of life (i.e., what can
you do to live longer?). This includes advocating for better medical
treatment, changing diet towards immune-supporting nutrition, and
attitudinal shifts that support longevity. The likelihood of a PLWHA in
acting to increase the quantity of her or his life is not high, unless the
first item – increasing the potential quality of life – is first addressed.
At a social and community level, it is critical that people hear and
see that (a) it is possible to live well with HIV for many years, if
certain actions are taken; and (b) that the infected person can – and will
– add to the collective resource base for a long time, if she or he is supported
in staying healthy. In other words, don’t expect people to care
about you, if you do not care about yourself.
Belief 3: ‘HIV/AIDS is a punishment for sin’.
Whether we like it or not, no matter how principled and objective we
try to be, we cannot escape from the reality that the most fundamental
components of our internal and external social interactions,
laws and other infrastructures, are rooted in religious beliefs. Even
the ones who claim to be agnostic or atheist, cannot escape from the
socialisation of these beliefs through education systems, the very
words we use to explain our reality (right/wrong, good/bad), laws,
and so forth.
There is not a single society that does not have – either explicitly or
implicitly – a value system based upon some dogma, whether religious or
otherwise. This does not mean that the dogma is ‘good’ or ‘bad’ – it s
imply means that it exists, and needs to be taken into account.
One of our most basic social beliefs is that, when ‘bad’ things
happen, something caused it. Whether this is because we assume the
power to cause these things to happen, or whether it is because of some
mystical process (when it is called ‘sin’), we need to blame someone
or something. Blame is a very powerful social force. From blame
comes shame, and from shame comes the need to punish, to alleviate
the shame.
of life), what other sustainable reason is there?
Our belief is that the first thing to die,
when a person is diagnosed with HIV, is their
future. It dies in the doctor’s office. The body
follows a few years later, unless the future can
be opened up again.
How often have we seen or heard an
‘AIDS Sufferer’ speak to an audience, with
nothing to say, except how miserable, and
how hopeless-helpless they are? How many
public ‘AIDS Sufferers’ cannot answer the
most basic questions about HIV and AIDS?
There is an assumption that publicly declaring
one’s infection with the virus somehow
translates into instantaneous expertise, or
entitlement for public sympathy and
support, when in fact it does not. In many
ways, by virtue of the ‘Victim Persona’
presented, the ones who disclose their status
publicly perpetuate the belief that living
with HIV and AIDS is ‘helpless’ and ‘hopeless’,
which in turn supports the unstated
shared belief that people living with HIV
and AIDS are simply an additional burden
on a society with scarce resources.
It is imperative that public disclosure is
encouraged, but it should only happen with
full awareness of the impact of such a disclosure.
The bottom line is that, in order to
prevent victimisation through stigma, the
person living with HIV needs to ensure that
she or he does not utilise the ‘victim’ image
in the first place.
It is a tragic reality that ‘victims’ get persecuted,
once sympathy has run out (which is
fairly soon). People living with HIV or AIDS
(PLWHAs) have exactly the same responsibility
as the ones who do not, in terms of making
efforts to contribute to the future development
of the community. In other words, PLWHAs
need to pay attention to what is called
‘secondary gain’ – the perception that ‘victim’
status confers special privileges and attention,
as well as exemption from community
responsibilities. People don’t like it, and won’t
support it – they have problems of their own.
However, the situation changes, when a person
(any person) is viewed as contributing to
the future of the community. Therefore, the
helpless-hopeless ‘AIDS Sufferer’ image is
counter-productive in the fight against stigma.
The essential recommendation of the
above is that, regardless of HIV status,
communities will reject and eject members
who are considered a non-productive, noncontributing
burden to that group. The
exception is the elderly, who have already
made their contribution, and very young
6 aLQ – June 2005 Stigma: The extreme end of
a discrimination continuum
…the first thing to die, when a
person is diagnosed with HIV, is
their future. It dies in the doctor’s
office. The body follows a few
years later…
When we tell people that if they do certain things they can get
infected, it is automatically assumed – usually by all concerned – that it
was their ‘fault’ that they became infected. The word ‘fault’ is used
carefully here, not to mean the same as responsible.
Why do we use the word ‘fault’ versus ‘responsible’? Because the
word ‘fault’ (or ‘blame’) more accurately describes the emotions and
thoughts involved. The words ‘fault’ and ‘blame’ imply that something
‘bad’, ‘sinful’, ‘wrong’ has happened, and that someone needs to be
punished for it. In common usage, the words ‘fault’ and ‘blame’ are
never used to describe ‘good’ things or behaviours, only ‘bad’. In
contrast, the word ‘responsible’ is used to describe ‘good’ things, as
well as ‘bad’ things, such as ‘who is responsible for this lovely dinner?’.
Many people living with HIV will probably agree with this,
especially when it comes to explaining stigmatising behaviour originating
from others. However, although this does indeed seem to
explain some aspects of stigma, the ones living with HIV should
keep in mind that they share in this belief. This is what is referred to
as ‘internalised stigma’.
It is incredible that, with so many people living with HIV, that so few
openly protest against stigma. We joked a few years back that, if we
were to start a political party only for the ones infected with HIV, we
could win the next election. That is not going to happen, simply because
the overwhelming majority of the ones living with HIV feel that their
infection is their ‘fault’, and that they are to ‘blame’, and that they need
to be ‘ashamed’. The ones who refuse to accept the ‘blame’ tend to try
to blame someone else, which is probably the basis of ‘revenge’ infections.
Regardless, the behaviour is based upon blame/shame, which in
turn is based upon the belief that ‘bad’ things need to be punished.
We are not sure where this fault-blame-shame phenomena is
strongest – society, or the ones infected. It is probably evenly spread,
with the one sector merely feeding and supporting the other in a
co-dependent symbiotic manner.
The bottom line is that most people accept this cause-effect (blameshame-
punishment) belief, including many of the ones who fight
stigma or who care for the ones infected. In many stigma forums, the
process merely involves the shifting of blame and shame, and consequently
punishment, merely perpetuating the problem.
The issue of blame-shame-punishment is not unique to HIV and
AIDS. Rape survivors have been blamed-shamed-punished by
courts and the public for decades, because people seem to need an
explanation of why things, that are controllable, happen to people.
For example, there is a belief that if we can pinpoint that what a
woman was wearing contributed to her being raped, then we can prevent
rape by not wearing the same clothes. At the same time, this
means that she was to blame. We feel ‘safer’ when blame-shamepunishment
has occurred. The fact that rape is an act of violence,
that the motivation for rape has nothing to do with sex, age, or what
someone wears, and has instead got to do with the need to express
power and dominance, due to deep-seated inadequacy, is ignored in
this blame-shame-punishment of the rape survivor.
So where do we begin in the process of eliminating blame-shamepunishment?
Counter-active measures
We would imagine that the first place to look is why we seem to
need this process in terms of maintaining a sense of coherence in our
worldview. In other words, we all need to be able to understand how
things work in our world, in terms of cause-and-affect, so that we can
do what needs to be done, and take responsibility
for what we do. We simply
cannot allow entropy (decline of order into
chaos) to happen – it is in our nature to create
greater order, not less. The exception is when
a system is so dysfunctional that we need to
destroy it, because it cannot be rehabilitated.
However, even this destruction is viewed as a
means to an end, with the end being a more
ordered and functional system (defined
according to some or other belief). This is how
wars are justified.
Measure 1:. Acknowledge that
individuals have the power to choose to
refrain from discrimination, as opposed
to placing all power to socialisation, and,
thus, removing individual responsibility.
Measure 2:. Encourage/challenge
organised religion to not only examine
their emphasis on blame-shame-punishment
(versus compassion), but also
to do so actively and publicly.
It is probably a good time to introduce
eligion at this point, as the various religions
of the world have had a fundamental and
profound influence in the understanding of
‘blame’, what causes ‘bad’ things to happen,
and how we should respond to this.
However, when one adds religion to sex (and
HIV is after all a sexually transmitted
disease for most people in the developing
world), one gets a rather heated debate that
is rarely rational.
If we may summarise such a debate: Sex is
‘bad’ and punishable unless sanctioned by the
representative of the religion (i.e., marriage).
Therefore, HIV and AIDS is somehow a
punishment for some or other sexual ‘sin’.
Therefore, HIV and AIDS is viewed as the
aLQ – June 2005 7
Stigma: The extreme end of
a discrimination continuum
When we tell people
that if they do certain
things they can get
infected, it is automatically
that it was their ‘fault’
that they became
aLQ – June 2005
moment that the need changes, the tradition
ceases to fulfil any survival function.
However, this does not mean that the
behaviour ceases. For example, even
though, we often forget why we were doing
it this way in the first place, we continue
with it anyway.
It is also important to realise that every
tradition serves specific groups more than
others, and will be protected by the ones
whom it serves most. It is at this point that
self-interest interferes with the interests of
the group as a whole. Gender roles are a
case in point. Women stand to gain a great
deal from equality in practical reality, while
men perceive this as a real threat to their
power. When resources are scarce, this
becomes very difficult, as there is not a lot
to share equally.
Cultural traditions and norms are also
comforting in that they provide a sense of
identity and belonging. When situations
become difficult, it is reassuring to know that
you know ‘what people like us do’ in such circumstances,
even if the methods are no longer
The harsh reality is that a culture or tradition
cannot be effectively protected, since this
is guaranteed to cause harm to the people it is
supposed to serve, in the long term. The reason
is simple. Change is the only guaranteed
reality, and this requires adaptation and flexibility.
Languages come and go, as do all other
cultural behaviours and norms. The only way
to allow some language or tradition to survive
is to incorporate it into a newer tradition or
physical proof of ‘sinful’ sexual behaviour. So why should this matter?
It matters because people want to go to Heaven. And guess who controls
the security access codes to Heaven? Yes, the moral authorities –
the same ones who say sex is a ‘sin’, and HIV and AIDS is
proof of ‘sin’.2
The root of value-based blame-shame-punishment is fear – fear of
being worthy enough to be accepted and loved. This applies not only to
their relationship with God, but also to other people.
We cannot ignore the reality that the majority of the population in
the developing world has a strong and enduring religious value system,
whether this is Muslim, Christian, or traditional animist. We also
cannot ignore the fact that these systems of belief have a powerful influence
on stigmatisation, including the internal stigmatisation by the ones
infected. To ignore this reality, we not only ignore probably one of the
key areas to deal with stigma, but we also set aside one of the most
widespread resource infrastructures in dealing with the consequences of
HIV and AIDS, such as home-based care, caring for orphans,
prevention and a myriad of other issues.
Measure 3: Encourage/challenge politicians and other
leaders to be conscious of how they reinforce stigma through
their words and actions, which contradict non-discriminatory
policies and principles.
Another important area is within the political arena. Politicians need to
spend less time reacting to each other, and spend more time creating a
vision for a better world, and then earn their keep by making this a
reality. It is perhaps time that we start asking ourselves why people do
not resist death too strongly, and why people are so willing to accept
‘blame’ and ‘shame’ for merely having a virus in their blood. Leaders
need to engage the task of addressing stigma directly, by simple actions,
such as publicly embracing the ones living with HIV.
Belief 3: ‘It’s the way we do things’ – Culture and tradition
should not be questioned
We were doing a talk a while ago and during the question and answer
session a woman, who had taken a cell phone call while we were
speaking earlier, raised her hand and said: ‘It is not in my culture to
discuss sex with my children’. Our response was: ‘It’s also not in
your culture to carry a cell phone, but you’ve adapted to that with
great ease’.
This story illustrates an important quality of culture. It is about
convenience and increased survivability (functionality). At first, there
is scepticism, but if it works, it soon becomes ‘what we do’.
Culture and traditions include a wide range of behaviours and
activities, including language, dance and rituals, as well as how we
deal with illness and death, and the regulation of relationships, gender
roles and sexuality.
In recent years, there has been an enormous amount of energy
directed at protecting ‘culture’. This is based upon the value of respecting
diversity and differences. However, protecting a culture or tradition
is a two-edged sword. On the one side, the unique qualities of a group
of people are preserved and on the other side, such protection can
reduce the flexibility of that group in the face of change, thus reducing
their ability to survive.
Historically, there is no such thing as a culture or tradition that
arrived spontaneously, and endured unchanged. This is simply because
cultures and traditions were born out of specific situational necessities,
and endure only as long as that necessity continues. At the very
8 Stigma: The extreme end of
a discrimination continuum
Politicians need to
spend less time
reacting to each
other, and spend
more time creating a
vision for a better
world, and then earn
their keep by making
this a reality.
Counter-active measures
Measure 1: Tell the truth
One of the only forces that we can rely upon to encourage communities
to adapt to the new realities of HIV and AIDS, is a full awareness of these
realities. However, we are not referring to the bland intellectual type of
awareness that most people associate with ‘awareness’. Awareness does
not come from statistics or posters. Instead, we refer to direct awareness
of the realities of HIV and AIDS, including all the gory details. Social
change, unfortunately, is usually motivated by pain. For as long as
society can hide the pain, change tends not to happen.
Communities will continue to stigmatise the ones infected until
such time as communities can no longer function without the ones
infected. In other words, until there are simply too many people to
hide away, and until the ones infected – and others knowing that that
they are infected – are filling important and valuable roles in society.
This is not a theoretical concept. In almost every country affected
by HIV and AIDS, stigma has endured until there were simply too
many people infected or ill to ignore. Then, when the realities are so
huge, the society undergoes a ‘stigma burnout’, which is a process
of giving up trying to deny what is really going on. One of the
primary methods to accelerate ‘stigma burnout’ is for people to see
and know the truth about HIV and AIDS realities.
Once we have a more realistic view of HIV and AIDS (from a
public perspective), we need to allow various cultures to adapt to
these realities, as they have done in the past. Yes, there will be
resistance, but overall, people will find solutions. None of this can
happen if they do not know, see, hear and touch the realities that
threaten their survival. People do not respond to abstracts, nor to statistics.
They respond to real life reality, which affects them directly.
In conclusion, stigma is in essence one of two things The onset
of a Dark Age of fear, pain and social fragmentation, or the opportunity
for a Renaissance, a revival of a new social order, based upon
greater compassion and understanding. The only way to head off this
potential 21st Century Dark Age is the open questioning of what we
hold to be true in our cultures.
In order for us to be effective, we must challenge people’s core
beliefs. We have spent 20 years trying to fix everything, except what
really needs to be fixed. We are addressing everything, except our core
beliefs, and yet, it is these very beliefs that are creating the problem.
There is only one solution, if we hope to make any difference at
the social level. We must challenge people’s beliefs. When we can do
this, we can then make a real impact on
stigma, discrimination, gender inequity and
a range of other social issues. What are the
values we want to share? How do we want to
live? Unlike past generations, we cannot
say: ‘For my children I want …’. If we wait
and delay, it will be too late. This time, we
need to start with ‘For me, and my children,
I want …’.
It is small comfort to the ones infected,
who have been stigmatised to know, that
there is a larger social process which is
occurring, and that at some point things
change for the better. However, this is how it
happens in every society. Therefore,
continue to challenge the fear and
ignorance, fight with understanding, knowing
that you are helping to accelerate the
larger process. However, always remember
that the change starts with you – your
beliefs about yourself. Question these
beliefs, and then you have earned the right
to challenge the beliefs of others.
1 This article is a shortened and edited version of the paper ‘Stigma:
Beliefs determine Behaviour’ published on
2 We need to make it abundantly clear that we are fully aware of the
incredible work and compassion displayed by many people from all
religions, including in the area of HIV and AIDS. It has been our
observation that they focus their values and beliefs upon love, compassion,
forgiveness and that they do not place much energy on
blame-shame-punishment. They are too busy making a difference to
engage in dehumanising activities.
aLQ – June 2005 9
Stigma: The extreme end of
a discrimination continuum
David Patient and Neil Orr are the
Directors of the Empowerment
Concepts. For further information
and/or comments please contact
David on +27 83 226 9466 or at
We have spent 20 years trying to
fix everything, except what really
needs to be fixed. We are
addressing everything, except our
core beliefs, and yet, it is these
very beliefs that are creating the
New premises…
The ALN has moved to different
premises. Our new contact
details are:
Suite 6F, Waverley Business Park,
Dane Road, Mowbray 7700
PO Box 13834, Mowbray 7705,
Cape Town, South Africa
Tel: +27 21 447 8435
Fax: +27 21 447 9946
Veli Maya3, the youngest of 5 sisters, was often
referred to as her father’s son, since she looked
just like him. For her 21 stbirthday, she was
thrown a party at which she was expected to
introduce her boyfriend. In her speech, she jokingly
said she did not like boys. That afternoon,
local boys told her she needed to behave like a
woman. A week later, they threatened to make
her a woman. Her parents took it lightly. She
ran to the police who laughed at her and told
her ‘maybe she needed to get a man’. She is
currently unemployed and 5 months pregnant
with a child whose father she will never know.
She and her best friend were raped by local
boys who suspected them to be in a lesbian
relationship. Both are HIV positive and without
social support.
Veli might not have been gay, but what happened
to her and her best friend is a reality
for many lesbian women in South Africa
today. What then is the reality for individuals
who are stigmatised and discriminated
against because of their sexual orientation
and their HIV status? Previously, we
engaged in an article ‘We need to challenge
our prejudices’ (ALQ, Nov 2004) which
briefly looked at how human rights, as
enshrined in the Constitution, continue to be
a dream for most lesbian, gay, bisexual and
transgender (LGBT) people. Now, I would
like us to engage on ‘homophobia’ faced by
LGBT people resulting, amongst other
things, in their inability to access adequate
services and resources.
Literally, ‘homophobia’ refers to the
‘hatred or fear of homosexuals’ (Branford,
2001). In reality, homophobia comprises the
experience(s) of being discriminated against,
rejected, stigmatised, marginalised and
alienated, because of one’s sexual orientation –
the attraction to someone (of the same sex).
In South Africa, we come from an era where peace officers
(police) had a right to arrest and detain men and women suspected
to be homosexuals. Today, everyone is equal before the law and has
the right to equal protection by, and benefit of, the law. We are in an
era, where neither the state nor an individual may 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 (Section 9 of the
Constitution)4. Homophobia is supposed to have no place in this era.
There has been little medical or behavioural research into
developing a comprehensive LGBT well-being programme.
Cultural, economic, racial, age-related, and sexual diversity within
the LGBT community dictate a broad range of needs. Various
factors further impact on LGBT people leading to inadequate
physical and mental health care, including:
 Concealment of sexual orientation and gender identity from
care provider
 Delayed medical care or reluctance to seek preventive care
 Disclosure of sexual orientation and gender identity
 Depression, anxiety, suicide
 Lack of support from family, school, church, government
 Societal prejudice, discrimination and intolerance
 Sexism and heterosexism (oppression of non-heterosexual
 Violence against LGBT community – physical, sexual and
psychological violence in the public domain and, as well as in the
private sphere5
A series of research in Durban by the KZN Coalition for Gay &
Lesbian Equality, 1995-2000, revealed that there was no information
and/or service catering for LGBT people, or that discussed the
transmission of STIs among people of the same sex. This posed an
urgent need to promote an awareness of health, HIV and AIDS
issues as they affect LGBT people. Through the work of the Durban
Community Centre, we learn that homophobia faced by LGBT people
has been, and continues to be rife resulting as well in their inability to
access adequate services, information and resources.
Discrimination experienced at home
At home, LGBT people are subjected to ridicule and rejection.
Most families, upon finding out that a family member is a Lesbian,
10 aLQ – June 2005
Homophobia is supposed to
have no place
HIV and AIDS: An extra layer of stigma and discrimination for
Lesbian and Gay people1
Nonhlanhla Mkhize2
LGay, Bisexual or Transgender, take this as an insult. Depending on
age, the person is either beaten, kicked-out of the home or both.
Some families subject the person to harsh punishment with an aim
to ‘change’ her/him and others organise lovers of the opposite sex,
arrange appointments with psychologists (who must ‘treat’ the
person), or send the person to a local religious leader or local
traditional healer to help pray for, or heal the person.
LGBT youth above the age of 18, who have been kicked out have
nowhere else to, but the streets for refuge, since the access to
shelters in Durban is rather limited, due to capacity (shelters are
full), age restrictions (refusal to take in youth above 18), and
required fee (boarding fee per day has to be paid). Sadly, for LGBT
youth who have access to shelters, life within shelters is often
defined by degrading living standards, situations and treatment.
Discrimination experienced at school
The South African Constitution guarantees everyone the right to
basic education. In addition, the South African Schools Act (No 84
of 1996) based on constitutional principles and values, guides
schools, governing bodies and principals towards adhering to the
law. Sadly, even with this in place, LGBT scholars continue to be
subjected to discrimination and stigmatisation at schools. They are
bullied, manipulated and ill-treated by others. Youth, who display
lesbian and gay ‘characteristics’ or ‘behaviours’, are subjected to
punishment, detention and suspension. In a situation in which most
of their teacher(s) allow their own prejudiced views to determine
how they handle such matters; it is not surprising that there is an
increase in bullying and suicide at schools.
In the incidences reported to the Community Centre, homophobia
faced by LGBT youth in schools and the infringement of their human
rights have hindered their access to information and resources.
1) Two girls found kissing at a convent school are expelled.6
2) A transgender girl who prefers to wear full boy’s uniform is
told to either obey the school rules (scholars are expected to wear
full school uniform) or to leave school.7
3) A young man arrives for the school’s matric dance with his
boyfriend. His principal tells him that such behaviour is not
acceptable and that he and his boyfriend must go home.8
Discrimination experienced at work
The Employment Equity Act (No 55 of 1998), including Equal
Opportunities and Affirmative Action Policy, the Labour Relations
Act (No 66 of 1995), the Basic Conditions of Employment Act (No
75 of 1997) and other labour legislation and policies are geared
towards fair labour practices and equal benefits for all employees.
Reality is that employees are not treated equally nor with dignity
and respect, despite the legislation. Many LGBT people are not able
to find employment, are fired from work, denied promotions and
benefits (i.e. medical aid, insurances and maternity leave), because
of their sexual orientation and gender identities.
LGBT people experience discrimination and ridicule at work
from their work colleagues and even their employers. The
experiences of LGBT people within the
informal sector of employment are even
worse, because one is also vulnerable to violence
and abuse.
Discrimination experienced from
religious institutions
Many LGBT people, who are brought up
to regard their religious institutions as
home, find themselves without this home
once they are discovered to be L, G, B or T.
They are refused entry to their places of
worship and are denied access to other services
that come with being a member of that
religious institution or faith. In such cases,
experiences of homophobia include being
treated with utter disgust and humiliation by
members of the religious institution and
society. Subsequently, the family is no
longer ashamed, but is embarrassed and
Most people fail to understand that one
does not have to be religious to be affected
by what religious leaders say about LGBT
people. But most religious leaders preach
hate speech which results in LGBT people
being hated and segregated by society, if not
abused and even killed.9
Discrimination experienced by the
legal system
While in 1999 the crime of sodomy was
decriminalised10, in 2002 two men were sentenced
to 25 years in jail for the crime of
sodomy. To their advantage, when media
reported on the case, they received support,
appealed the decision and walked home
free. This is but one of many instances
where the judiciary fails to adhere to South
African laws and, in so doing, infringes on aLQ – June 2005 11
Most families, upon
finding out that a
family member is a
Lesbian, Gay, Bisexual
or Transgender, take
this as an insult.
An extra layer of stigma and discrimination
for Lesbian and Gay people
12 aLQ – June 2005 An extra layer of stigma and discrimination
for Lesbian and Gay people
the rights of LGBT people and further hinders
their access to legal protection that is
unbiased and unprejudiced.
LGBT people may not have a legal right
to marry yet, but many have gone ahead and
married. The Durban Community Centre is
aware of cases where same-sex couples have
gone to courts to get married and/or to get
divorced and were ridiculed by officials,
instead of being provided with accurate
information on how to address their matters.
In civil matters, the legal practitioners often
fail to assist LGBT people with regards to
same-sex assault matters; domestic violence
and sexual offences claims are not taken
seriously. In 2001, officials in the
Department of Home Affairs (DHA)
laughed at a lesbian couple who wanted to
apply for a birth certificate for their child.11
Discrimination experienced at the
hands of police
0n Thursday 24 March 2005, Charles (18
years) and friends (20 and 21 years) threw a
party for their friend’s 20th birthday. After 2
nights of no sleep, non-stop drinking and partying,
more guys joined them. On the
Saturday afternoon, about 15h00, as he went
down to the garage to collect more drinks,
Charles found himself surrounded by three
men. After they each had their turn forcing
themselves on him, he managed to escape to
the nearest police station. The police asked
him where home was and referred him to a
police station next to his home. Here, the
police told him that male rape cases were
handled by the Regional Head Office (45 minutes
away), and that no car was available to
Most people fail to
understand that one
does not have to be
religious to be affected
by what religious
leaders say about
LGBT people.
take him there. Around 19h18, he collapsed en route to the police station.
At 21h00, he was found by a passing driver who drove him to a
police station. Here, the police told Charles that he was drunk, did not
know what he was saying and needed to return when he was sober.
The driver took him to a local district surgeon who first argued that
men cannot be raped. He later argued that he could not help him without
a form from the Police. The district surgeon only attended to him
around 00:45 after a local LGBT activist (who was called in) threatened
to sue the hospital. Charles made a statement with the police at
The above clearly indicates that police require further training on
how to do their job adequately. Police need to understand the
urgency in accessing health care after rape (i.e. of any kind).
Numerous cases of male/female rape go unreported, because of the
very same prejudice, ridicule and discrimination that individuals are
subjected to at the hands of the police.
Discrimination experienced within the health profession
Increased risk for certain diseases, combined with inadequate
healthcare, places LGBT people at a disadvantage and jeopardises
their health. Sadly, within the health profession are many people
who discriminate against LGBT people, resulting in the violation of
their rights, including the right to have access to healthcare services
and reproductive healthcare, as guaranteed in Section 27(1)(a) of the
Findings of research on the sexual practices that render LGBT
people vulnerable to STIs and HIV14 revealed that most LGBT people
do not undergo medical examinations every six months as
required and delay seeing a doctor. In most cases, the reason is not
lack of money, but homophobia, discrimination and stigmatisation
experienced while accessing the services.
Some health professionals have admitted that they are treating
LGBT people because they must, but if they had a choice would not.
Subsequently, LGBT people receive compromised health care
services and treatment. Similar to Charles’ case, Mdu went to a
doctor for an STI check-up in his anus and the doctor refused to treat
him. Instead, he asked his secretary to find him a doctor, who is
prepared to treat a homosexual.15 To ensure that LGBT people have
access to health care, VCT, STI/HIV testing, treatment, and so on,
the Durban Community Centre has had to compile a list of LGBT,
and LGBT friendly, service providers, including health
Some health professionals have
admitted that they are treating
LGBT people because they must,
but if they had a choice would not.
professionals and institutions in Durban and KZN. This has also
been the case in Gauteng, Eastern Cape and Western Cape.
LGBT people are at risk of STIs. While safer sex means learning
and practising behaviours that decrease the chance of
contracting or transmitting diseases sexually, this still needs to be
negotiated and planned. Prevention is possible, but only if one understands
STIs and how they are transmitted.16 Section 27 of the
Constitution affords us the right to have access to reproductive healthcare
which includes prevention measures. The reality for the Durban
Community Centre is that there are not enough male condoms to
distribute to all areas in and around the city. Currently, condoms are
limited to 6000 male and 100 female condoms a month. In
addition, there are no gloves, no dental dams or even anal sex condoms
for LGBT people to use for safer sex.
The 2003 Oral Sex Survey by the Durban Community Centre
revealed that the majority of people engaging in oral sex did so without
protection. Most believed that oral sex was safe sex.17 These
findings were reported months after the former Deputy President
Jacob Zuma, during a LoveLife media campaign aimed at encouraging
people to talk openly about sex, was quoted, arguing during
question time in Parliament, that oral sex was ‘wrong’ and
‘unnatural’, and that he could not ‘answer on wrong things that
people do’ (Mail & Guardian, 21-27 June 2002).
While it is also important to have access to accurate and up-to-date
information, it is crucial that the information received is applicable to
the individual. It does, therefore, not help me, as a lesbian, to be
consulted on sexual and reproductive health and health care that is
based on heterosexual biases. It is of utmost importance that health
professionals realise that not every person attending a family planning
clinic and/or consulting on reproductive health issues is in a
heterosexual relationship, further stigmatising the very existence of
LGBT people.
Engaging with these few examples of how homophobia
experienced by LGBT people impacts on their lives and often results
in their inability to access adequate services, information, resources
and so on, it is my hope that you, the reader, begin to realise just
how heavy the extra layer of marginalisation, stigmatisation and
discrimination that HIV adds to the lives of LGBT people. It is,
therefore, important that these experiences are recognised and
addressed at home, at work, in communities,
within government, in business, by policy
makers, service providers and by
society. Until such time that these injustices
are attended to and are effectively addressed,
human rights will remain a dream for most
LGBT people.
Branford, W. 2001. The South African Pocket
Oxford Dictionary of Current English.
Oxford University Press.
1. The article is in part based on research conducted by the Durban
Lesbian & Gay Community & Health Centre.
2. The article was prepared and written by Nonhlanhla Mkhize with
input from Nomvuyo Dlamini (Programmes Manager) and Mduduzi
Mthembu (Centre Volunteer).
3. Veli Maya (not her real name) is a former client of the Durban
Community Centre.
4. The Constitution of South Africa, Act 108 of 1996.
5. Mkhize N. September 2003. LGBT Sexual Health. Paper
presented the Behind the Mask Lesbian Workshop. See also Sex
and Secrecy Conference, 22 – 25 June 2003, South Africa.
6. A case of two girls found kissing at a Convent High School, Durban,
7. The person is from a school in Lusikisiki, Eastern Cape, and a client
of the Durban Community Centre.
8. An experience related to a group of youth during an Amnesty
International Human Rights Seminar in March 2005 in Durban, South
9. Reference is made to Mathew Sheperd, who was beaten to death as
a result of homophobic comments of local leaders; and the violence,
rape and murder LGBT people face (as reported by the Forum for the
Empowerment of Women and a 2002 Felicia Mabuza-Suttle Show on
hate crimes).
10. National Coalition for Gay & Lesbian Equality v Minister of
Justice 1999 (1) SA 6 (CC).
11. The matter was brought to court. See J & B v Director General of
Home Affairs (1906/2002 DCLD).
12. An experience previously (2004) lived by one of the Durban
Community Centre’s clients.
13. Mkhize N. September 2003. LGBT Sexual Health. Paper presented
the Behind the Mask Lesbian Workshop.
14. Research conducted in 2004/2005 by the Durban Lesbian & Gay
Community & Health Centre.
15. An experience shared with the Durban Community Centre by a former
16. Mkhize N. September 2003. LGBT Sexual Health. Paper
presented the Behind the Mask Lesbian Workshop. See also Sex
and Secrecy Conference, 22 – 25 June 2003, South Africa.
17. See also Mail & Guardian, 19 – 31 December 2003.
aLQ – June 2005 13
Nonhlanhla Mkhize is the Manager at
the Durban Lesbian & Gay
Community & Health Centre and an
Anthropology Masters Student with
UKZN (Howard College). For further
information and/or comments please
contact her on +27 31 301 2145 or at
…to realise just how heavy the
extra layer of marginalisation,
stigmatisation and discrimination
that HIV adds to the lives of
LGBT people.
An extra layer of stigma and discrimination
for Lesbian and Gay people
aLQ – June 2005 E 14
I am not defined by HIV
People living with HIV are at risk of high levels of stress, caused by living in a society
that does not easily accept people, as they are, or for who they are. The same
stress could be caused by the denial, rejection and discrimination by partners and
society, as well as by internalised stigma of the person living with HIV her/himself.
Being HIV positive increases the risk of stress related to daily challenges, including
hearing references and words like ‘AIDS victim’, ‘guilty’ and ‘AIDS sufferers’. It also
makes one more susceptible to harmful behaviour, like the wilful infection of HIV to
one’s partner, not disclosing one’s HIV status, as well as the self-destruction
through alcohol and drug abuse and/or overcompensation.
Jason Wessenaar
Most of us have coping strategies to deal
with the stress of living with HIV encountered
in our daily lives. These can range
from finding someone to talk to, going for
counselling, praying, attending support
groups, writing journals, taking some time
out, meditation, to just accepting things as
they are. But, for a lot of other people living
with HIV, who have not disclosed their HIV
status, these kinds of support can be very
difficult to access. As a result, many people
living with HIV, who are constantly
confronted by the negative attitudes of the
ones around them, internalise these experiences
and come to believe that some of the
negative messages they receive about being
HIV infected are true. These attitudes are
related to words and images portrayed in the
media (print and audio), words used by
colleagues, friends and the society at large.
These internalised negative attitudes can
lead many people living with HIV to
have self-image/worth problems; ranging
from lack of self-confidence to actually
hating themselves.
Clearly, this is not good, but how does
it affect our sexual relations and our
behaviour at large?
For most people living with HIV in
relationships, to have protected sex depends
on several factors, including knowledge,
negotiation skills, assertiveness and/or fear
of rejection and isolation. Practicing safer
sex is not easy, if one has never done it
before. It is not easy for women to negotiate
safer sex with their husbands and partners.
It is also not easy for men who have sex
with men. The lack of skills to negotiate
safer sex plays a crucial role in how HIV is spread. In addition, most
people living with HIV, who have constantly faced rejection, stigma
and discrimination, find it difficult to negotiate safer sex with their
partners. Damage to their self-image may lead to a lack of selfvalue,
which might mean that engaging in ‘flesh to flesh’ sex weighs
more heavily, than the benefit of protecting themselves from reinfection
and protecting their partners from infection. The other side
of the coin is that they are, arguably, wilfully infecting others.
Persuading people living with HIV to start practising safer sex
depends more on improving their self-image and self-worth, as well
as on addressing issues of internalised stigma. There are no
programmes focusing on building the self-image/worth of people
living with HIV. Prevention programmes tend to focus on people
preventing themselves from HIV and not on people living with HIV.
The fact of the matter is that as a person living with HIV, I am more
likely to infect someone with HIV, than someone who does not know
her/his HIV status. People living with HIV learn from each other,
rather than from available programmes, about positive living. While
this is good for some, it is not enough and not even an option for the
ones, who are not open about their HIV status.
Damage to one’s self-image and the ‘shame’ associated with being
infected with HIV, may further aggravate this dynamic and can lead to
difficulties in discussing safer sex and/or sexual satisfaction. This
places a lot of people at risk of infection. And women are the ones who
bare the brunt in most cases, as they have no power to negotiate safer
sex practices with their partners, while their partners fear rejection and
being accused of infidelity, as and when they disclose their HIV status.
Working on one’s self-image/worth is a difficult task, but I
believe that it should be integrated in the counselling sessions, be
part of education and support groups, as well as disclosure campaigns
aiming at de-stigmatising HIV and, therefore, mitigating discrimination.
People living openly with HIV should be encouraged
and supported in their leadership, as well as support role.
Rebuilding my self-image and confidence was not an easy
journey for me. But, I must say, it was worth it. I constantly have to
maintain my self-worth and confidence, without being over
compensating. The following steps worked very well for me.
Disclosing my HIV status to myself played a big role in how I
looked at myself and, therefore, affected how others looked at me. I
am not defined by HIV and, therefore, I introduce and view myself
as a person living with HIV and not as ‘I am HIV positive’. I am,
first and foremost, Jason.
Going through a process of self-introspection meant that I
looked at the childhood stuff in my life and how I viewed myself
then, because I
believed that how I
looked at myself
now, as an adult, had
a lot to do with how
I viewed myself
then, as a child. I
realised that there
were a lot of similarities.
I never was a
self-confident person,
I was insecure
about many things
and I hated my life
and the environment I grew up in. I grew up
wishing that I could have a different life to the
one I had.
During this period, I realised, I had so
much work to do and that all the things I had
believed about myself, had very little to do
with what was done to me, but had a lot to do,
with how I treated myself because of it. I had
to first forgive myself for all the negative
things I have ever said and believed about
myself. And the journey continues…
aLQ – June 2005 15
I am not defined by HIV
News on resources…
Another new publication, that has been developed, prepared and published by the AIDS Legal Network in 2005, is
the ‘HIV/AIDS and Human Rights: Towards a supportive and enabling environment for women, children and other
vulnerable groups’ training manual. The training manual, conceptualised and compiled by Lene Øverland and
Johanna Kehler, focuses specifically on Guideline 8 of the International
Guidelines on HIV/AIDS and Human Rights and targets trainers within
civil society and is prepared for a facilitation approach based on interaction,
participation, information sharing and skills development.
The manual includes four modules pertaining to defining and understanding
core concepts, to the meaning and implication of Guideline
8, to South Africa’s response to the principles outlined in Guideline 8
and to practical advocacy steps aimed at enhancing the access to,
and implementation of, legislative and policy measures. While these
modules are prepared to be facilitated concurrently, it is also
possible to utilise any one of the modules as a stand alone module
for a education and training session. Thus, the manual provides as
much a resource for human rights education and training on the
Guideline 8, as it allows for sessions that specifically deal with one of
the issues, such as gender and gender legislation, the legislative and
policy framework as it pertains to HIV and AIDS realities and challenges,
as well as meaning and practical steps of advocacy.
A copy of this ALN publication can be obtained by contacting Sandy Okkers at the ALN office at +27 21 447 8435
or on
The fact of the matter
is that as a person
living with HIV, I am
more likely to infect
someone with HIV,
than someone who
does not know her/his
HIV status.
Jason Wessenaar is the Trainer at the
Centre for the Study of AIDS at the
University of Pretoria. He is also the
current host of Siyayinqoba Beat It, a
TV show about HIV and AIDS (SABC 1
on Sundays at 13h00). For further
information and/or comments please
contact him on +27 12 420 5888 or at
Equality, dignity and freedom form the cornerstone
of our Constitution2, guaranteeing
EVERYONE the right to not only equal
entitlement, but equal enjoyment of all rights
and freedoms. However, while the concept of
EVERYONE is one of the fundamentals
constitutionally guaranteed rights are based on,
the reality is marked by exclusion, prejudice,
marginalisation, stigmatisation, inequality,
discrimination and vulnerability of people
belonging to particular social groups, such as
young people, women, people living with, and
affected by, HIV and AIDS. Subsequently, social
groups, due to certain characteristics, such as
their sex, gender, age and/or HIV status, seem
to not only become excluded from the concept
of EVERYONE, but the extent to which the
various social groups are in the position to
equally enjoy their rights and freedoms remain
limited in accordance with these very same
characteristics. Thus, and despite the
constitutional commitment, society, arguably,
fails to provide an enabling society in which the
fundamental principles of equality, dignity and
freedom can become a reality for EVERYONE
and instead seems to nurture an environment,
not only perpetuating, but justifying the
discrimination, marginalisation and stigmatisation
of the ‘other’.
Acknowledging the gap between the
concept of ‘everyone’ and the reality of ‘us’
and ‘them’, this article aims to explore some
of the reasons as to why especially young people (15 to 24 years) are
at greater risk of HIV infection; examine the correlations between
discrimination, vulnerability, lack of responsibility and blame; and
argue that it is the very same correlation that determines the extent
to which young people are, and will remain to be, discriminated
against, vulnerable and at risk.
The fact is that while the right to equality and non-discrimination
(Constitution, Section 9), the right to have one’s human dignity
respected and protected (Constitution, Section 10), the right to life
(Constitution, Section 11), the right to be free from all forms of
violence (Constitution, Section 12), the right to privacy
(Constitution, Section 14) and the right to have access to healthcare
services (Constitution, Section 27) are constitutionally guaranteed
to EVERYONE, young people continue to encounter numerous
obstacles and experience discrimination in claiming their
fundamental rights and freedoms.
It is also a fact that young people are discriminated against,
vulnerable and at risk, even more so in a societal context in which
HIV and AIDS has reached pandemic proportions. While an
estimated 5.6 million South Africans are living with HIV, young
people between the ages of 15 to 24 are the ones mostly at risk of
HIV infection. The prevalence rate amongst young people is 10.2%.3
Acknowledging the fact that young people are vulnerable to, and
at risk of, HIV infection, often leads to the seemingly recurring
question as to WHY. The recurring answer seems to be that it is
because of young people’s lack of responsibility, because of young
people’s reckless behaviour, because of young people engaging in
sexual activities and/or because young people do not ‘want to listen’.
But is this really explaining young people’s vulnerability? Does
this really explain why young people are discriminated against and
have their rights violated? Should the question not be what role we,
16 aLQ – June 2005 Age-related stigma
and discrimination
Has age-related stigma and
discrimination become
acceptable and justifiable?
Young people and the vicious cycle of discrimination,
vulnerability and blame1
Johanna Kehler
Ias society, have played in creating an environment in which young
people are discriminated against and are vulnerable, and where we,
as society, may have failed our young people? The question should
not be whether or not young people are engaging in sexual activities,
but rather why young people (or anyone else for that matter) are
engaging in unprotected sexual activities. The question should not
be whether or not young people ‘do not want to listen’, but what
young people ‘do not want to listen’ to. The question should not be
whether or not young people lack responsibility leading to vulnerability,
but rather who needs to take responsibility for young people’s
It is a fact that a large amount of time, resources and efforts have
been dedicated to educate young people about various factors of
HIV and AIDS, as well as to educate young people about their rights
and responsibilities. But maybe we need to ask ourselves, whether or
not our HIV and AIDS education and awareness has reached the
ones who were meant to benefit, the ones who are most at risk of
HIV infection. Looking at the harsh realities of seemingly ever
increasing numbers of young people living with, and affected by,
HIV and AIDS, the answer seems to be no, we failed the ones who
were meant to benefit the most. That seems to raise the question as
to whether or not the information disseminated, and the message
portrayed, in all the education and awareness programmes are the
correct one, the ‘truth’ reflecting the facts.
It is also a fact that women, including young women, are disproportionately
infected with, and affected by, HIV and AIDS. This
raises the question as to whether or not our young people are
adequately educated about gender and gender equality, about sexual
rights and sexual behaviour, and/or about making responsible and
informed decisions about sexual activities and sexuality.
And finally, it is a fact that we live in a society in which
discriminatory beliefs, attitudes and practices seem to prevail, as
well as a society who seems to be not only reluctant, but also resistant
to change. A society, in which the entitlement and enjoyment of
rights seem to be much more based on one’s gender, age and/or HIV
status, than on the concept of equality and
human dignity. A society, in which young
people’s discrimination and, thus, vulnerability
is as much determined by their age, as it is by
their HIV status. Thus, while young people
are, for various reasons, vulnerable to, and at
risk of, HIV infection, they are, similarly,
vulnerable to, and at risk of, discrimination,
stigmatisation and violation of their rights
and freedoms, as and when they become
young people living with HIV.
There are undoubtedly numerous reasons
explaining, as well as justifying, young
people’s vulnerability. Lack of education,
high levels of unemployment and poverty,
lack of adequate healthcare services, lack of
recreational facilities – are but a few of the
reasons used to explain and/or justify young
people’s vulnerability. There are also
factors, such as socialisation, as well as
social, cultural and religious values and
belief systems and the extent to which they
are adhered to or not, that are often used to
explain young people’s vulnerability to HIV
infection. While the former seems like the
one we cannot challenge or change, the
latter seems to be, and should be the one,
we, as society, have to take responsibility in
challenging. It is, arguably, the status quo of
aLQ – June 2005 17
Age-related stigma
and discrimination
The question should not be
whether or not young people are
engaging in sexual activities, but
rather why young people (or anyone
else for that matter) are engaging
in unprotected sexual activities.
And while we
‘educate them’, while
we ‘tell them’ what is
‘good for them’, while
we ‘guide’ them, we
often seem to forget
to equip ‘them’ with
the necessary skills
and knowledge to
make responsible
young people’s vulnerability, as well as its
causes that has to be challenged so as to
create an environment in which young
people’s vulnerability to HIV infection can
be adequately addressed.
But what is the status quo? The status
quo is a society, in which young people are
often not seen and/or treated as equal to
people; a society, in which young people’s
rights are limited and violated in accordance
with their age; a society, in which morals
and belief systems seem to justify the
limitations placed upon young people’s
entitlement to rights; a society, in which
young people are subsequently discriminated
against, marginalised, excluded and,
thus, vulnerable.
And this status quo manifests itself
despite the constitutional guarantees provided
for EVERYONE. While everyone has the
right to be treated equally and not to be
discriminated against, young people, based
on their age, seem to be not as equal. Young
people are often excluded from decisions
concerning their lives; young people are
often ‘talked to’ and ‘talked about’, instead
of ‘talked with’; young people are often told
what to do and what is best for ‘them’,
instead of asked, what they may want to do
or perceive to be best for them. Young people’s lives seem more
often lived by parents, families, communities and the ever so strong
‘need’ to conform to societal expectations so as to not become
subjected to stigma, discrimination and marginalisation, than by
young people themselves. It seems to be acceptable to treat young
people different, because they are young, because they don’t know,
because they have to be guided. And while we ‘educate them’, while
we ‘tell them’ what is ‘good for them’, while we ‘guide’ them, we
often seem to forget to equip ‘them’ with the necessary skills and
knowledge to make responsible decisions; we often seem to be
challenged by the concept that they are people, who have to have
their rights as respected, as we expect our rights to be respected. And
part of these rights is the right to choose, which seems to be one of
the most difficult ones. Young people’s right to choose cannot, and
should not, be limited to our understanding, to society’s understanding,
of what might be ‘appropriate’, ‘acceptable’ and the ‘right
choice’ for a young person. The right to choose has to be based on
information and facts, including the pros and cons that enable one to
make a choice, to make an informed and responsible choice.
The fact is that everyone has the right to privacy and the right to
be free from all forms of violence. However, in the context of our
homes and families, we seem to be able to justify that young people
have only as much privacy as we, as ‘head of the household/family’,
are prepared to give, whereas our privacy seems to be ‘absolute’. So,
it seems to be justifiable for us to ‘check’ in young people’s belongings,
whereas it might be ‘punishable’ or at least it would be
‘reprimanded’, if a young person would ‘check’ in our belongings.
Similarly, ‘disciplining’ young people seems, despite their right to
be free from all form of violence and abuse, to be justifiable in the
context of our homes and families, whereas the moment someone
else ‘disciplines’ a young person, or ourselves, then it becomes a
crime, a violation of rights. Once again, the challenge seems to be
the concept of EVERYONE, who is entitled to have their rights
respected and protected, as well as EVERYONE, who is vulnerable
and who is at risk to be discriminated against and to have their
rights violated.
Everyone is entitled to have access to healthcare, including
reproductive healthcare. And yet, young people’s access to healthcare,
especially reproductive healthcare, seems to be limited by not
only their age, but by societal perceptions of ‘appropriate’ and
‘acceptable’ age and/or marital status to access reproductive healthcare.
If, however, young people are expected to make responsible
and informed decisions about their lives, including their sexual
lives, then young people need to have access to the information
based on which they are expected to make responsible choices. And
18 aLQ – June 2005 Age-related stigma
and discrimination
Young people’s right
to choose cannot,
and should not,
be limited to our
understanding … of
what might be
‘acceptable’ and the
‘right choice’ for a
young person.
Cconsidering young people’s vulnerability to HIV infection, shouldn’t
they rather be encouraged to access as much information and
services, including prevention methods, as possible, instead of being
judged and ‘scolded’, because they are too young. Healthcare
services, facilities and providers can, arguably, only be an adequate
source of information to young people as and when provided healthcare
services are non-judgemental, non-discriminatory and
confidential. Especially in the context of HIV and AIDS, it is of
utmost importance that the services, including prevention, testing,
treatment and care, are offered in an environment, which is free of
judgement, discrimination and prejudices, so as to facilitate responsible
decision making for everyone, including young people.
The above seems to indicate that as long as young people are not
perceived to be equal members of our families, our communities,
our society, the discrimination and violation of their rights and their
subsequent greater vulnerability to HIV infection will continue.
Similarly, as long as we expect young people to respect us, while we
are seemingly not quite as prepared to give the same amount of
respect to young people, we will continue to strengthen a societal
context in which young people are least in the position to make
informed responsible decisions about their lives. Only if we begin
‘talking with’, as compared to ‘talking to’ and ‘talking at’, our
young people about their needs, their desires and their hopes and
fears of being young, blamed and vulnerable, can we engage in a
process that carries the potential of adequately addressing and
responding to young people’s discrimination, marginalisation and,
thus, vulnerability.
While the fact that young people are vulnerable and at risk
aLQ – June 2005 19
remains, the challenge seems to be taking
responsibility and thus, addressing the
causes of their vulnerability. If we agree,
that it is ‘us’, as society, and not ‘them’, as
young people, who could be as much
blamed for the status quo of young people’s
vulnerability, than it is ‘us’ and not ‘them’,
who have to take responsibility for not only
challenging, but also changing the status
And finally, if we agree that EVERYONE
is, and should be, equally entitled to
have their rights and freedoms protected and
respected, than we will have to agree that
young people are part of EVERYONE and
that it is our responsibility to treat young
people, as we would want to be treated, and
to ensure that young people are equally in
the position to make responsible informed
decisions that are primarily based on facts
and realities and least on morals and belief
systems. If young people are the ones who
need to be ‘guided’ and ‘protected’ by ‘us’,
than it should be part of our ‘guidance’ and
‘protection’ to create an environment in
which young people are not discriminated
against, marginalised and judged based on
their age, and thus, are less vulnerable and
more positive.
1. An earlier version of this article has been presented at the AIDS
Legal Network Public Debate ‘Youth: Blamed and Vulnerable’ on 15
June 2005 in Cape Town.
2. The Constitution of South Africa, Act 108 of 1996.
3. UNAIDS. 2004. Report on the Global AIDS Epidemic: July 2004.
Johanna Kehler is the National Director
at the AIDS Legal Network. For further
information and/or comments please
contact her on +27 21 447 8435 or at
Age-related stigma
and discrimination
…it is our responsibility to treat
young people, as we would want
to be treated, and to ensure that
young people are equally in the
position to make responsible
informed decisions that are
primarily based on facts and
realities and least on morals and
belief systems.
RSouth Africa’s transition to democratic rule
has brought with it many challenges. Our
people’s need for housing, jobs and basic
necessities makes the Minister of Finance’s
task daunting – a classic case of limited
means with unlimited needs.
R23,5 million per day is spent on our prisons or
R9,2 billion for the financial year 2005/6.1
At first glance, the temptation, when confronted
with this astronomical expenditure, would
be to accuse government of unnecessary
expenditure on a category of South Africans,
who deserve very little, if anything at all. It
would be popular to proclaim that prisoners,
who after all, have broken the rules, should not
be concerned about. Reality, however, requires
that we do exactly the opposite.
It is argued, that one judges a nation by
how it treats its prisoners. A nation that
addresses the needs of the poor, the marginalised,
the unemployed and the weak, is a
nation that does not deny its responsibility to
afford assistance to the ones in need, a nation
that recognises that prisoners require
assistance; assistance, not in the form of a
hand-out without responsibility, but by means
of tools and opportunities to improve. The
South African Constitution recognises our
past and enjoins us to establish a society
based on democratic values, social justice and
fundamental human rights.2
When the average prisoner is a Black
African male between the ages of 19 to 35,
unemployed, with little or no primary education
and little prospect of that changing on his
release, this category, ‘a captive audience’,
provides our society with the ideal opportunity
to produce an individual who can rejoin society
educated, skilled, healthy and corrected.3
Section 35(2)(e) of the Constitution
proclaims that:
Everyone who is detained, including every
sentenced prisoner, has the right to conditions
of detention that are consistent with
human dignity, including at least exercise and the provision, at state
expense, of adequate accommodation, nutrition, reading material
and medical treatment.4
Various judgments of our courts have affirmed the rights of
prisoners, including with the often quoted passage by Judge Corbett in
1979 stating:
It seems to me that fundamentally a convicted and sentenced
prisoner retains all his basic rights and liberties…of an ordinary
citizen except (emphasis by author) those necessarily inconsistent
with the circumstances in which he, as a prisoner is placed…There
is a substantial residuum of basic rights which he cannot be
denied; and if he is denied them, then he is entitled, in my view, to
legal redress.5
More recently, in the post constitutional (interim and final) era, the
residuum principle was again invoked, for example, when prisoners
challenged the fact that their access to ARVs was denied. Judge Brand
stated in the judgement of this case that:
There are prisoners, like the first applicant, who may well be able,
upon their release, to earn an income which will enable them to
afford anti-retroviral treatment…Since such inroad cannot be
described as a necessary consequence of incarceration (emphasis
by author), I do not believe that the refusal to provide these
prisoners with anti-retroviral medication is consistent with the
principles of our common law. 6
Prisoner’s have been, and are, theoretically at least, protected by
our law. Besides their deprivation of liberty and free movement, they
retain all of the fundamental rights and freedoms, as free persons,
including the right not to be unfairly discriminated against.7
Prisons are microcosms of the broader society. As with our
communities, in general the ones likely to contract the HI virus and/or
AIDS are young, unemployed, poor, and are un-or under-educated
Black South Africans. Similar socio-economic conditions that afflict
broader communities, affect prisoners. The prison population is not
static. Approximately 26 000 prisoners are released from prisons each
month. A similar number enter the prisons each month.8 It has to be
recognised, that people carry their health status, including transmissible
diseases, such as TB, HIV and AIDS, in and out of prisons.
Inside prisons, high risk behaviours for HIV transmission include
unprotected sex, intravenous (IV) drug use and the use of contaminated
cutting instruments. Coupled with the inhumane conditions, such as
overcrowding (in some instances in the region of 200 to 300%), as well
as stress and related problems, our prisons are, arguably, havens for
diseases to run rampant. A study, pertaining to the rate of natural
deaths in prisons, shows that it increased exponentially from 211 in
1996 to 1683 in 2003.9 These deaths are largely attributed to the HIV
and AIDS pandemic and the lack of constitutionally guaranteed access
to adequate health care.10
20 aLQ – June 2005
Prisoners have rights too…
Prisons, as microcosms of society, are part of the HIV and
AIDS pandemic
Umesh Raga
Prisoners have rights too…
Judge Van Zyl, in a case in which a terminally ill prisoner (cancer)
was released by order of the Court, was scathing, stating that:
The facts set forth in the most recent annual report of the Judicial
Inspectorate of Prisons indicate a shocking state of affairs. Despite
the huge increase in the prevalence of HIV/AIDS and other
terminal diseases in our prisons, only the tiniest percentage of
prisoners suffering from such diseases were released on medical
grounds during 2002.11
He further stated that if more prisoners were not so released, ‘the
alternative is grotesque: untold numbers of prisoners dying in prisons
in the most inhumane and undignified way’.12
In recent years, several cases brought to the courts have confirmed
and reinforced prisoners’ rights, including their right to equality, to
human dignity and the right to adequate healthcare. For instance, in the
cases of Van Biljon13 and Cloete14, both dealt with prisoners who live
with HIV and AIDS; the Court in the former ordered the Department
of Correctional Services to provide anti-retroviral medication and in
the latter held that the prisoner, who contracted the HI virus in prison,
be eligible for reconsideration of his sentence. In addition, in the case
of C v Minister of Correctional Services15, the Court held that
prisoners cannot be tested for the HI virus without their consent and
thus, have the right to informed consent. The prisoner in this case was
successful in his application.
The Act contains no provision for the separation and/or segregation of
prisoners solely on the basis of their health status. It does provide,
however, for the segregation as prescribed by a medical practitioner16. The
intention in this instance is for the sole purposes of the safety, and the
prevention, of transmissible diseases amongst prisoners. The Department
of Correctional Services in its recent White Paper on Corrections in
South Africa, outlining the strategy for the future, only mentions HIV and
AIDS in a passing and peripheral way, which is, arguably, a major cause
for concern. The White Paper [2005:82] states that:
HIV/AIDS and other communicable diseases such as TB and
sexually transmitted infections (STIs) will be addressed as integral
to provision (sic) of comprehensive health care services and
health care education to inmates. The Department should focus on
programmes to reduce the impact of HIV/AIDS and other
communicable diseases to allow people under correction to leave
thesystem as healthy as possible.
In conclusion, the following recommendations are but some of the
steps and measures carrying the potential to ensure that the rights of
prisoners are not violated based on their HIV status:
 Whilst the legislative and policy framework is in place prohibiting the
discrimination of prisoners living with HIV and AIDS, NGO’s and
civil society must lobby for a detailed policy and action plan to
aLQ – June 2005 21
Prisoners have rights too…
supplement the White Paper and to ensure
adequate implementation.
 Legislation, providing for early release of
prisoners who are terminally ill and/or
where prison healthcare facilities are inadequate,
must be adequately applied and
implemented .
 Conditions and procedures violating
prisoners’ right to privacy, in that prisoners’
HIV status can be easily identified when
queuing for food (special diets) and at medical
parades must be addressed as a matter
of urgency.
 It is the responsibility of the Department of
Correctional Services to ensure that prisoners
can not only engage in private and
consensual sex, but also in private and
consensual safer sex.
 The feasibility of conjugal visits in prison
must be addressed, as one of the possible
mechanisms to respond to prisoners’
emotional and sexual needs.
DCS. 2005. White Paper on Corrections in
South Africa. Department of Correctional
1. 2005 estimates of National Expenditure, Vote 10, Department of
Correctional Services Budget.
2. The Constitution of South Africa, Act 108 of 1996, Preamble.
3. Department of Correctional Services’ stated core function.
4. The various other fundamental rights are equally applicable subject
to limitations as per Section 36 of the Constitution.
5. Goldberg and others v Minister of Prisons and others 1979 (1) SA
14 (A).
6. Van Biljon and others v Minister of Correctional Services and others
1997 (4) SA 441.
7. See Section 9 of the Constitution, as well as Promotion of Equality
and Prevention of Unfair Discrimination Act (No 4 of 2000).
8. Judicial Inspectorate of Prisons Annual Report 2003/2004, p. 18.
9. Op cit, page 16/17.
10. Section 35(2)(e) of the Constitution.
11. Stanfield v Minister of Correctional Services 2003 (4) All SA 282 (C).
12. [Stanfield v Minister of Correctional Services 2003 (4) All SA
282 (C). This case is equally important in the context of prisoners’
right to dignity.
13. Van Biljon v Minister of Correctional Services 1997 (4) SA 441.
14. S v Cloete 1995 (1) SACR 367 (W).
15. 1996 (4) SA 292 (T).
16. Section 30(1)(c) of the Correctional Services Act.
17. Section 79 of the Correctional Services Act, as well as Section
276A(3) of the Criminal Procedure Act (No 51 of 1977).
18. The Judicial Inspectorate of Prisons has noted that some prisoners
have complained that these are not conducted confidentially.
A study, pertaining to the rate of
natural deaths in prisons, shows
that it increased exponentially
from 211 in 1996 to 1683 in 2003.
Umesh Raga, who has prepared and
written this article in his personal
capacity, is the Case Manager in the
Legal Services Unit at the Judicial
Inspectorate of Prisons. For more
information and/or comments please
contact him on +27 21 421 1012 or at
22 aLQ – June 2005
For many people hearing and talking about Limpopo is
thinking about nature and people drenched in extremely hot
and dry weather… When driving to Limpopo from Gauteng
one is ushered in by a big billboard saying: ‘Limpopo, the
Home of Peace, the Garden of Eden’. And truly, this is what
living in Limpopo reflects. But, I guess, there is more to it too.
Limpopo is a province with high unemployment rates,
low literacy levels, severe poverty and lack of access to
basic services, such as water and electricity, in many of the
almost forgotten villages and communities. Sparingly
distributed and far apart, there are some towns and larger
communities with better access to jobs, health, education
and many other necessities needed to prosper in life, but
these remain few.
Many people are trekking from the one place to the
other in the hope of improving the living conditions for
loved ones. At month end, when salaries and wages are
paid, one can witness ‘the great trek North’ bringing the
hard earned cash home to assist the ones who stayed
behind. On Sunday afternoon, and early Monday morning,
the reverse happens. Families are torn apart by the drive
for survival, and this becomes a breeding ground for HIV,
silently taking hold of many people in vulnerable life
situations. Indeed, for many, life is not easy in Limpopo.
Statistically, Limpopo does not feature amongst the
highest HIV infection rates on the list of South African
provinces, but this could be a misgiving. It needs to be
taken into account that many residents and communities
are situated far from health facilities. In several instances,
clinics and hospitals might be available, but they lack the
skilled staff to deal with this situation and to provide
Voluntary Counselling and Testing (VCT), as well as other
services. A high turnover in employment of healthcare
workers gives rise to loss in confidence in the system.
Many people find a way out, by seeking help from
traditional healers and practices, which might not always
be the appropriate approach to deal with AIDS related
illnesses and diseases. The need for HIV and AIDS
education is high.
No wonder that stigma and discrimination are rife. It is
much easier, and takes less effort, to deny that one is
infected with HIV, than to accept and learn to live with the
disease. When HIV enters a family, through an infected
family member, it turns the situation around for all. Scarce
family resources are re-directed to keep the loved ones
alive. Many go to great lengths and are willing to pop out
high amounts of money in an attempt to turn the HIV
‘verdict’ away, because it might lead to loosing one’s
‘sense of belonging’.
Through joint efforts, local communities try to meet the
needs experienced in their communities; community-based
organisations (CBOs) are mushrooming. Many people join
and become volunteers in the hope of finding a job and/or
getting the assistance one hopes for.
The ARV roll-out is taking off slowly, very slowly in some
areas. A lot of misinformation is spread about ARV medication.
Many challenges are ahead to bring the life-saving pills
to the people infected. Internal, as well as external stigma
needs to be overcome, to venture out into the open and to
face the reality of one’s life living with HIV. In some areas,
huge travelling distances are part of the ‘deal’ to get to
health facilities involved in the roll-out, a strain and extra
challenge, especially when the family is stripped of cash.
For the ones able to access the medication, additional
challenges might be a lack of nutrition, difficulties to provide
long-term food security and a lack of support from family
and/or community, as well as poor access to Disability
Grants and the removal of the grants, when the health
condition improves. All these might lead to patients dropping
out of the system, followed by a fast deteriorating health
condition, which creates in turn more disbelief in the
medication and warrants for more misinformation about
ARVs. The vicious cycle is complete.
Healthcare workers and NGOs, involved in the roll-out,
are challenged too. Because of the few accredited facilities,
as well as the restriction in number of patients to go on the
drugs, it is a constant dilemma to select candidates. Criteria
have to be stringently adhered to. How can one make sure
that a client will adhere? Whom to select? Whom not to
select? Do patients not have equal rights to obtain the
medication? What are we missing in our adherence training
programmes? Where does all the misinformation come
from? Which information should be given to communities?
Who should distribute the information?
Once a patient drops out of the system and wants to
return, it takes an enormous amount of effort and time to
re-establish the trust of the patient and her/his family in the
medication and the system. Investigations for possible
resistance are to be done and it may be difficult for the
patient to understand why it ‘takes so long’ to get back on
the drugs. And although, it might be easier for the patient to
understand why all these investigations need to happen, it
may be even more difficult for the relatives, especially when
they are weary of the working of, and the need for, the drugs.
In such instances, family counselling might assist in dealing
with the matter, but resistance from the people involved may
be hard to deal with, skills might be missing, feeling
discriminated against might be enhanced.
Provincial view
Limpopo, the Home of Peace,
the Garden of Eden… Cecile Manhaeve
Active involvement in programmes of people living with
HIV and AIDS helps to ease the burden. Many of the people
are strongly motivated and go to great lengths to ease the
burden of the disease on individuals and families. Support
groups for people living with HIV and AIDS, as well as for
people on ARVs are successful strategies, which can help to
bring down the stigma and discrimination, and to assist
clients with adherence. Why do we find so few of these?
Networking with experienced organisations and individuals
could help us forward.
HIV and AIDS, are, and remain to be, complex issues to
deal with. Approaches, knowledge and education develop
fast and seem to remain ahead of us all. More people need
to get involved for the ‘right’ reasons. Behaviours need to
change. Windows and doors need to be opened wide, so
that a wind of change and commitment can flow freely.
Beloved reader, what have you done so far? Do you
really care?
Cecile Manhaeve is the ARV Coordinator at the
Bela Bela HIV/AIDS Prevention Group. For more
information and/or comments please contact her on
+27 14 737 8196 or at
aLQ – June 2005 23
Young people are the ones who are vulnerable and at
risk. While this applies to any society, young people
are even more vulnerable and more at risk in a societal
context in which HIV and AIDS has reached pandemic
proportions. According to statistics, an estimated 5.6
million people in South Africa are
living with HIV and AIDS and
young people between the ages of 15
and 24 years are the ones mostly at
risk of HIV infection, with a prevalence
rate of 10.2%.
Acknowledging that young people
are vulnerable to, and at risk of, HIV
infection, often leads to a discourse, in
which young people are often blamed;
blamed for a lack of responsibility,
blamed for reckless behaviour,
blamed for engaging in sexual activities,
as well as blamed for living with
HIV and AIDS. Another possible
discourse could be, and should be, to
question society’s responsibility for
young people’s greater vulnerability to HIV and AIDS.
We, as society, need to ask ourselves whether or not our
HIV and AIDS education and awareness programmes are
reaching the ones most at risk of HIV infection. Since
women, including young women, are the ones disproportionately
infected and affected, it also raises the question
as to how far we have come in educating our young
people about gender and gender equality, about sexual
rights and sexual behaviour, about making responsible
and informed decisions about sexual activities and
sexuality. But then again, acknowledging the large
amount of time, resources and efforts that have been
dedicated to various factors of the HIV and AIDS
pandemic, it seems ‘easier’ to not question the efficacy of
these efforts, but to blame young people.
It is within that discourse that the AIDS Legal
Network (ALN) asked questions as to young people’s
views, opinions and beliefs to HIV and AIDS realities
and challenges experienced by young people themselves.
So, as part of the ongoing ‘We are all equal…aren’t we?’
campaign, an ongoing campaign launched by the AIDS
Legal Network in October 2004, we
embarked on a nationwide School
Survey, inviting Secondary School
learners to respond to the ALN slogan
and to write an essay exploring the
extent to which we are all equal, we
are all affected and we are all positive.
The aim has been to facilitate a
forum in which young people can be
heard and raise their voices to issues
affecting their lives and future. The
response has been overwhelming;
both in the sense of numbers and in
the many creative ways young
people expressed themselves.
Initiated by the enormous response
from young people, what began as a
‘survey’ to collect some data, grew into a published
‘booklet’, filled with numerous, interesting, inspiring
and thought provoking stories, experiences, views and
opinions written by 142 learners from 20 Secondary
Schools from 8 provinces in South Africa.
Learners are positive – is what we, the AIDS Legal
Network, had to conclude after reading the responses and
what we hope, the reader, will discover while engaging
with young people and their views and experiences. And,
hopefully, it will initiate debates and discussion amongst
all of us as to the reason for young people’s vulnerability
and maybe even question the rightfulness, or even
necessity to blame…
A copy of this ALN publication can be obtained
by contacting Sandy Okkers at the ALN office at
+27 21 447 8435 or on
Learners are Positive
Provincial view
The strategies to prevent the spread of
HIV have focused on the promotion of
condom use, reduction of numbers of
sexual partners and the treatment of
sexually transmitted diseases (STDs).
Many of these responses have, however,
failed to address social, economic and
power relations between, and amongst,
women and men. These relationships
together with physiological differences,
determine to a great extent women’s and
men’s risk of infection, their ability to
protect themselves and their respective
share of the burden of the epidemic.
Gender Inequality: The Basis for
women’s vulnerability to HIV and
In the Namibian society, gender
inequality is one of the social structural
factors significantly contributing to the
spread of HIV. As well as other social
challenges, unequal power relations
between women and men place women
at greater risk of HIV infection.2 Kaundjua
(2000:18)3 argues that unequal power
relations between women and men in
Namibia make women more vulnerable
to ill health, which includes HIV infection.
The consequences of gender inequality,
such as gender-based violence,
women’s poverty and women’s lack of
access to social and economic
resources, further determine that women
are at particular risk of HIV infection.
According to statistics,4 in 1999
women accounted for 54% of all new
cases of HIV infection in Namibia. In addition, women are also
diagnosed at a younger age, given that the median age of HIV
diagnosis is 30 years old for women and 35 years old for men.
While young women between the ages of 15 to 24 have an
overall infection rate of 18.8% to 20.8%, the corresponding
estimates for young men is 7.9% to 10.4%. In Namibia, the
percentage of young women living with HIV is 29%, as
compared to only 8% for young men. Given the age/gender
differential in HIV infection rates, it is not surprising that women
are less likely to live beyond the age of 40 and that women have
a life expectancy at birth that has dropped from age 55.4 in
1999 to age 45.6 in 2000.
Although, it is a fact that women are physically more
vulnerable to HIV infection, because of biological factors,
biology alone does not account for the significant gender
differential in the abovementioned statistics. Women and young
girls are disproportionately vulnerable to HIV, because of social
structural factors. In 2002, Steven Lewis, the Secretary General
to the UN Envoy on HIV/AIDS in Africa, stated:
That the pandemic is now, conclusively and irreversibly, a
ferocious assault on women and girls … The toll on women
and girls is beyond human imagining; it presents Africa and
the world with a practical and moral challenge which places
gender at the centre of the human condition.5
Girls, due to a number of social structural factors, are
particularly at greater risk of HIV infection. Their exposure to the
disease is usually by older men, who exploit the low
socio-economic status of girls and have sexual intercourse in
exchange for small gifts or money.6 In addition, many of the girls
are exposed to HIV infection from their male cohorts, who
consider sexual intercourse a necessary part of dating, and the
girls fearing rejection, give in to the boys’ demands.
Recently, a 19 year-old girl from northern Namibia publicly
announced her HIV positive status in an effort to warn other
young people that HIV and AIDS is a real threat. In an interview,
she mentioned that she not only had full knowledge about HIV
and AIDS, as well as preventative measures, but also that she
had previously been an HIV and AIDS awareness campaigner.
When asked how, with all the knowledge she had about HIV
and AIDS, she could let herself become infected, she explains
24 aLQ – June 2005
Gender Inequality and HIV and AIDS:
The Namibian experience
Based on research on issues of HIV and AIDS and gender, conducted
in Namibia,1 it can be concluded that sexuality and fertility are not
simply matters of rational individual choices, but are embedded in a
complex set of social, economic and cultural relationships.
Damoline Muruko
Regional view
[The Namibian, DATE, 2002:1-4]:
It is true that I have the knowledge and the information but I
did not have the courage or the power to tell my partner to
use a condom each time we had sex. I had the fear of telling
the guy please let’s use a condom. I was shy. I kept
thinking, what this guy would say.
In Namibia, women are more likely to live in impoverished
circumstances and their economic, as well as social, marginalisation
places women in HIV risk-taking situations. A UNAIDS
report [UNAIDS, 1998:28] stated that ‘The high incidence of HIV
among Namibian women is the result of the complex interaction
of poverty, lack of power over sexual decision-making, and
infidelity of men’. As much as girls in Namibia are at risk, due to
transactional sexual exchanges, so are many older women in
Namibia forced, by economic circumstances, to engage in
sexual relationships in exchange for ‘gifts’ of food, clothing and
support for their children. Many of the men, who participate in
these exchanges, have several women whom they have sex
with in exchange for gifts, as well as a wife with whom they have
a formal relationship.7
For many women, their economic dependency and lack of
decision-making power means that they do not have the ‘right’
to refuse high risk sexual behaviour or to enforce condom use,
even if they know their sexual partners have been unfaithful.
Furthermore, many women in sexual unions are perceived not
to have the right to refuse their partners’ sexual advances
without condom use; wives especially do not have the right to
refuse sexual intercourse with their husbands, who feel they
have the right of control over their wives’ bodies.8
Many women in Namibia live in abusive relationships, which
frequently lead to high risk sexual behaviour. Domestic violence
is in many situations accompanied by sexual violence.9 Sexual
violence places women at greater risk of contracting HIV,
because condoms are usually not used during forced sexual
intercourse. Marital and date rape take place within many
sexual relationships. As previously stated, many men do not
believe that marital rape is possible, given that sexual intercourse
with a wife is seen as a right, not a privilege. LeBeau et
al. (1999:88) found that:
From an early age, coercion and violence may be part of
many women’s experience of a sexual relationship. Some
women have no reference point for a sexual relationship
outside of violence, since they have been exposed to
violence throughout their entire relationship history.
Sexual violence within a dating relationship also exposes
girls to HIV infection.10 Very often, young men who take young
women out and pay for drinks and food expect that the girls will
have sex with them, while other young men feel that girls do not
really mean ‘no’ when they say ‘no’ and they feel ‘you must
force her’.11
In addition to marital and date rape, rape by a stranger has
increased dramatically and thus, women are at increased risk of
HIV infection. However, while the number of rape incidences
have increased dramatically over the last few years, Namibia
has neither the infrastructure nor the
finances to provide PEP to survivors of
rape, thereby significantly increasing their
chances of HIV infection.12
Further to the challenges women
face, due to social structural factors,
many women in Namibia face the
additional challenge of negotiating sexual
relations in a social environment that
fosters high risk sexual behaviour.
Subsequently, young women are at
significantly greater risk of HIV infection
than young men; women in Namibia are
forced, due to the economic
circumstances, into relationships of sexual
exchange for economic benefit;
women in relationships often do not have
condom use enforcement rights; and
many women’s lives are dominated by
gender-based violence.
Given the primarily sexual dimension
of infection, HIV and AIDS is closely
linked to reproductive and sexual rights,
since the social and cultural dimensions
of sexual and reproductive activities
promote and entrench gender inequality,
as well as increase women’s vulnerability
to HIV infection. 13
Reproductive rights take on another
dimension in relation to HIV and AIDS,
as hard-fought battles of the feminist
movement are being eroded. Examples
include the control often exerted by
healthcare workers over the reproductive
choices of women living with HIV
and AIDS, in that women living with HIV
requesting termination of pregnancy are
‘forced’ into sterilisation;14 women living
with HIV and AIDS are often not given
accurate information regarding
pregnancy and breastfeeding;15 women
often face difficult decisions regarding
breastfeeding as a culturally preferred
option in that a decision to not breast
feed can lead to a ‘forced’ disclosure of
a woman’s HIV status;16 and women are
faced with judgmental and hostile
attitudes from service providers,
including testing without consent and
refusal of services.17
The analysis of the HIV and AIDS
pandemic, including the driving forces
aLQ – June 2005 25
Regional view
26 aLQ – June 2005
and huge impact on individuals (women,
men and children), households and
communities, clearly shows that gender
inequality is at the centre of the epidemic
and that a human-rights approach is an
important lens through which to view HIV
and AIDS.
The main focus of any approach
should incorporate a careful analysis of
gender power relations and the particular
context in which women and men live,
and a deeper understanding of women’s
position within society and the HIV and
AIDS pandemic.
While initially a ‘gendered’ approach
meant working with only women, for
example, on educating women on
condom use, a stronger recognition of
the factors constraining women’s ability
to negotiate safer sex, allowed a shift in
focus from women to working with
women and men, or with a focus solely
on working with men.
This is certainly true in the context of
HIV and AIDS, where the focus of many
programmes and campaigns is now on
involving men. This is not a problem in
itself, but when programmes targeting
men are at the expense of programmes
for women, or when programmes target
men, but do not challenge gender
inequality, such programmes become
problematic and should be challenged.
A ‘gendered’ approach should,
therefore, not be at the expense of a
feminist agenda, which gives a high
priority to help women change or
transform power dynamics. Baden and
Goetz (1998)18 caution that in some
policy applications, gender has lost its
feminist political content. Thus, gender
becomes descriptive, focusing on
the different roles and responsibilities of
women and men, instead of challenging
the power imbalances.
LeBeau, D et al. 1999. An Anthropological Assessment of Health
Care and Risk Behaviour in North-Western Namibia. Draft.
UNAM/MoHSS: Windhoek.
The Namibian. 1 Aug 2002. 19-year-old girl declares publicly her
HIV status.
1. Edwards L. 2004. HIV/AIDS, Poverty and Patriarchy: A Gender Perspective. Windhoek: Nara
Training Centre.
2. Tibinyane N. 2002. “Gender inequality fuels spread of HIV and Aids amongst women”. In Sister
Namibia, Vol. 14, No. 1, p. 7.
3. Kaundjua M. 2000. HIV and AIDS Epidemic in Southern Africa: A Case of ‘High Risk Milieu’ in
Namibia’s Health. Unpublished Master Thesis.
4. UNDP. 2001. Namibia Human Development Report 2001.
5. Address at the 2002 AIDS Conference in Barcelona. (
6. LeBeau et al. 1999. An Anthropological Assessment of Health Care and Risk Behaviour in North-
Western Namibia. Draft. Windhoek: UNAM/MoHSS. pp. 97-98.
7. LeBeau et al. 1999. An Anthropological Assessment of Health Care and Risk Behaviour in North-
Western Namibia. Draft. Windhoek: UNAM/MoHSS. p.97.
8. LeBeau D & Mufune P. 2001. The influence of Poverty on the Epidemiology of HIV/AIDS and its
Subsequent Reinforcement of Poverty among Economically Marginalised Families in Northern
Namibia. Paper presented at the Southern African Universities Social Science Conference
(SAUSSC), Windhoek, Namibia. 3 – 5 Dec 2001.
9. LeBeau D. 1997. The Nature, Extent and Causes of Domestic Violence against Women and
Children in Namibia. Research report presented to the Women and Law Reform Committee,
Windhoek, Namibia. p.16.
10. UNDP. 2001. Namibia Human Development Report 2001.
11. LeBeau et. al. 1999. An Anthropological Assessment of Health Care and Risk Behaviour in
North-Western Namibia. Draft. Windhoek: UNAM/MoHSS. pp. 89-99.
12. UNDP. 2001. Namibia Human Development Report 2001.
13. Reproductive rights refer to rights that focus on and relate to the potential and ability to
procreate. This includes issues such as fertility, family planning and termination of pregnancy.
14. Mthembu P. 1998. “A positive view”. In Agenda No 39.
15. Seidel G & Tallis V. 1999. Reconceptualising the issues surrounding HIV and breastfeeding and
the information given to women by health workers: Findings from sociological research in KwaZulu-
Natal, South Africa. Unpublished.
16. Paxton S. 2001. Parent-To-Child Transmission: Breaking down barriers to implementing
effective models. Paper presented at the 6th ICAAP Plenary, The Key Centre for Women’s Health in
Society, The University of Melbourne, 8 October 2001.
17. Manchester J & Mthembu P. 2002. “Positive Women: Voices and Choices”. In Brief, No 11,
BRIDGE, Brighton: Institute of Development Studies.
18. Baden S & Goetz AM. 1998. “Who needs sex when you can have gender? Conflicting
discourses on gender in Beijing”. In C Jackson & R Pearson (Eds), Feminist Visions of Development.
London: Rutledge.
Damoline Muruko is the Project Lawyer at the Aids Law
Unit of the Legal Assistance Centre in Windhoek,
Namibia. For further information and/or comments
please contact her on +264 61 223356 or at
Regional view
Annual General Meeting…
The AIDS Legal Network (ALN) held its Annual General Meeting on 19 February 2005 in Cape
Town. As part of the AGM, a new Board of Directors was nominated and duly elected. The ALN
Board of Directors comprises of Pierre de Vos (Chairperson), Isabella Mabengeza (Vice
Chairperson), Beverley Franks, Printha Sewdass (Treasurer), Umesh Raga, Wendy Isaack and
Johanna Kehler (Secretary).
aLQ – June 2005 27
SMainstreaming is not an end
– it is a strategy
The problem with mainstreaming
is that it is seen as an end in itself.
We ask have we successfully
mainstreamed. Is mainstreaming
working? Is mainstreaming misunderstood?
And as we ask such
questions, we get more and more
lost in the dark. And as we fumble
about, we get more distant from the
goal mainstreaming was meant to
address in the first place – the goal
of gender equality.
Mainstreaming is an approach,
an overall strategy, advanced by
women’s rights and feminist
activists in development, to
make sure that women’s concerns
would come into the centre
of things – into the mainstream.
It came from the thinking
that everything is gendered; that
access to economic institutions
and/or political office, to one’s
experience of harassment when
standing at a bus stop are all
gendered, in that a person will
experience all of these differently,
depending on whether you are a
woman or a man. These
women’s rights and feminist
activists realised that the unequal
gender relations between
women and men – their unequal
access to resources, to power
and authority shapes all
experiences. That the way
women and men experience
poverty, or their place in a community
project, will be affected
by women’s lesser access to
resources, power and authority.
And that within a class, race or
ethnic group, which might suffer
discrimination, it is the women who
will have less than the men, the
women who will be subordinate.
Women’s rights and feminist
activists realised that in order to
ensure women’s interests were
met, it was important to find
ways ensuring that development
thought and practice took on
board the difference being a
woman or a man made to every
area of life. And so, the approach
of mainstreaming came into
being. It was an approach meant
to work for a society where
women will no longer be subordinate,
where women and men
will share workloads, decision
making and resources, where
women will no longer be the
victims of violence and rape,
where women will have control
over their bodies. Where being a
woman will not make one more
vulnerable to HIV or to poverty.
What mainstreaming, as an
approach, was trying to get away
from was marginalised projects
for women, where women in a
community would, for example,
be tinkering away on the margins
– baking bread or making
baskets – while the men of that
same community discussed
politics and made decisions on
land reform. Or, at a national
level, where a marginalised under
resourced government ministry
of women’s affairs, low down in
the hierarchy, dealt with women’s
welfare problems, while the more
powerful departments of government,
such as finance and
treasury, neither included women
as participants nor took into
account women’s concerns. A
mainstreaming approach intended
that, in addition to separate
women’s projects development
practitioners, women participated
as equals to men in discussions
and plans on all matters, including
such concerns as land reform or
economic development, so that
they would bring their needs and
interests to these discussions
and, thereby, shape policies and
making a point
Mainstreaming: Understood
or Misunderstood?
Shamim Meer
comment: making a point
28 aLQ – June 2005 comment: making a
resource allocations together
with men. The women’s rights
activists, who advanced mainstreaming,
thus, saw in it the
potential to bring women and
their concerns to economic and
political discussion and planning,
and to challenge male power
and male dominance in all areas
of life.
Since the 4th International
Conference of Women in Beijing,
mainstreaming has been adopted
by most governments and
development organisations as a
strategy by which to achieve
gender equality. But, as mainstreaming
got taken up in practice
by governments, development
organisations, policy makers,
project planners and
implementers, it seems to have
resulted in a number of confusions
– at times even being derailed
deliberately by the ones who were
terrified at the very thought of
women’s equality.
Confusions, misunderstandings,
resistance and fear
The first confusion, it seems, is
about what it is that we are
mainstreaming. Most often
people talk about mainstreaming
gender. What they really mean to
be saying, since unequal gender
relations are everywhere and in
everything, (in ways that make
women subordinate) is that we
are mainstreaming gender
Secondly, there is often
confusion over what it is that we
are mainstreaming into? Is it
simply a matter of ensuring
gender equality in all and every
agenda without discerning
whether that agenda is in
women’s interests? Or as some
have put it, have we checked to
see if the stream is a dirty stream
that we want to even enter? In
other words, to take an extreme
example, were apartheid policies
to return to South and Southern
Africa, will we be clamouring to
mainstream gender equality into
this agenda or would we be
looking for ways to eliminate this
agenda? Definitely, our aim
would be to eradicate this
agenda, but in this process of
struggle we would be making
sure that women and their
interests are a part of the
challenge to unwanted and
sinister social policies. Or, to take
our current economic context,
would we want to mainstream
gender equality into current
economic and trade policies,
which result in job losses and
increasing costs for the poor, or
would we be attempting to challenge
such policies, at the same
time bringing concerns for
women’s rights to such challenges?
In other words, our
mainstreaming agenda should
not simply be about uncritically
integrating gender equality into
everything and anything, but it
should be about transforming
harmful agendas in the interests
of the majority, so as to end
gender, race, class and
other forms of exploitation and
Thirdly, and this point is linked to
point two above, the stream,
women’s rights activists are
mainstreaming into in
development, is a rational
economic framework, which only
admitted the technical and did not
admit the political (Mukhopadhyay,
2004).2 This framework failed to
recognise the conflict and power
which lie at the root of unequal
gender relations. It assumed
consensus. It assumed that all
problems are technical. Agencies
got caught up in their own logic
and so, even when they tried to
uncover why they were not moving
closer to gender equality, they
identified the blockages as being
technical – as related to
inadequate planning and
the solution as more adequate
So, instead of dealing with
unequal relations of power, tools
and checklists were devised and
the approach was to ‘number
crunch’, to count the number of
women on projects. From
the point of view of existing
development practice, it was
easier to address procedures and
operations, and to count
numbers, without tackling deeper
structural change (Jahan, 1995).3
Not surprisingly, these technical
solutions have proven inadequate
in redressing unequal relations of
power. Mainstreaming gender
equality in these contexts was like
trying to fit a square peg into a
round hole.
Mainstreaming attempts worked
aLQ – June 2005 29
with what was already there and
did not challenge this overall
framework. Gender equality was
thus, grafted on to existing planning
methods and procedures
(such as log frames) without
questioning whether or not these
were capable of addressing
goals of social equality.
For their part, the women’s rights
activists, who were advancing
mainstreaming, were concerned
with speaking the language of
development practitioners in
order to get them to take on
gender equality and so they were
to an extent complicit in
developing tools, checklists and
other technical means to plan,
implement and monitor projects.
More recently, there has been
considerable reflection on this
and an awareness that the
strategies we use to advance
equality need to be constantly
reviewed; as these could act
against the very issues we are
trying to change.
Fourthly, mainstreaming came
on the back of a shift in
development – a shift away from
a focus on women to a focus on
gender. The focus on women
had some difficulties – the main
difficulty being that women
tended to be seen as the
problem. What the focus on
gender was trying to clear up
was that it was not women, but
the system of gender oppression
that was the problem. Like
systems of class and race
oppression there was this gender
system that subordinated
women and gave men power. In
the same way as black and
working class people were not
the problem, but rather the
systems of racial and class domination
that were the problem
and that had to be addressed.
However, this was misinterpreted
and the intent of this distinction
between women and a system of
oppression was taken to mean that
women’s projects were out,
because mainstreaming was in.
Separate women’s projects were
seen as backward and the more
progressive move was seen as
doing away with women’s projects.
The architects of mainstreaming
– the feminist and women’s
rights activists – never intended
that we do away with separate
projects for women. In fact, they
saw separate projects for
women as critical for women’s
empowerment and key for
attaining women’s rights. But,
the shift to gender and to mainstreaming
was taken by
many NGOs, international
development agencies, and
national states to mean a shift
from a focus on women to
projects for women and men.
This shift is harmful to women
and harmful to goals of gender
equality. This is not to say that
men should not be involved in
the struggle for women’s rights,
but this struggle has to be led by
women as agents and men must
support this struggle on
women’s terms (Win, 2005).4 In
much the same way as any
oppressed group, black people,
indigenous people, workers, the
landless must be the leaders in
their struggles even though
others may act in solidarity
with them.
This brings me to my fifth point,
which is not so much about
confusion as about resistance –
resistance to gender equality and
to the language of politics. Why
would there be such resistance?
Resistance is born out of
prejudice and self-interest.
Gender relations affect each and
every one of us in very deep and
personal ways. Men and some
women also, are threatened by
gender equality, by women being
full citizens, being people in their
own right, instead of being under
male control as daughters,
wives, and mothers. To eradicate
male power over resources and
power, including power over
women, goes against men’s
gender interests, and against the
interests of the women who help
to bolster the existing gender
system. Eradicating male power
is threatening to development
institutions, to communities and
families all of which are
organised on the premise of
male superiority and women’s
subordination. To end women’s
subordination is to attack the
very fabric of society.
Many of the individual
development actors across
institutions, such as NGOs,
nternational donor agencies,
national governments, each have
comment: making a point
30 aLQ – June 2005
their own gender interests and
often, unless one is a feminist or
women’s rights activist, these
interests are about keeping
existing unequal gender relations
of power intact. In other words,
policies, such as mainstreaming,
do not fall into a vacuum. They
enter institutions which are
already gendered in particular
ways – usually in ways that
subordinate women and their
interests – and, as they get taken
up by individuals in these
institutions, who might have their
own interests in keeping the
existing gender order intact.
Mainstreaming policies thus, get
manipulated and reshaped in
accordance with institutional
agendas and the agendas of the
individuals in these institutions.
Out of the hand of gender
activists and into the hands of
people, who have no real interest
in advancing women’s equality,
these strategies take on different
meanings and can end up working
counter to the intent of their
architects, and entrench existing
power imbalances.
Often, the resistance to gender
equality is not overt. Most often
resistance hides behind a
symbolic acceptance of mainstreaming
gender equality. The
evidence of resistance is in the
watering down of gender
equality to mean nothing more
than more women – the ‘number
crunching approach’, which
takes increasing numbers of
women to equal mainstreaming,
while in the meanwhile the
culture, the rules and procedures
of institutions women enter,
such as parliament, remain
unchanged. We see evidence of
resistance in responses, such as
public awareness campaigns
and income generation projects,
to address women’s vulnerabilities
in relation to HIV and AIDS,
without addressing the power
relations which lead to women’s
vulnerability in the first place.
So, what is to be done?
Much of the current experiences of
mainstreaming seem to be marked
by the confusions above about
what it is that we are mainstreaming,
not critically examining whether
the stream is one we want to enter
in the first place, about how to
transform the mainstream and not
reflecting sufficiently on how we
should go about mainstreaming
gender equality.
We need to be asking whether we
are moving closer to gender
equality. And more particularly, are
all women across class and across
race caught up in this move
towards gender equality? And, if we
are not moving to gender equality,
we need to ask what is it that we
should be doing. And it is not
simply equality of opportunity we
are talking about (ensuring women
have the same opportunities as
men), but rather substantive equality,
which ensures that women are
able to take up the opportunities
available through, for example,
measures to level the playing field.
In development at the present, a
rights-based approach is being
advanced in struggles against
poverty and for gender equality.
Approaching development
questions as rights, has the
potential to shift us away from a
welfare approach to an approach
which sees poor women and men
as citizens who have rights, who
are agents who can organise
together to determine their destiny.
But, we need to make sure that a
rights approach is informed by
gender equality concerns and
includes women rights as human
rights – for often rights frameworks
work from a notion of a degendered,
de-raced, de- classed
human being and, in so doing,
does not address gender, race and
class inequalities. We also need to
guard against rights approaches
being little more than the latest fad
(Wheeler & Pettit, 2005)5, which
entails new language to cover up
the reality of resistance to change,
the reality that systems of class,
race and gender privileges, that
give some people power over
others, remain unchallenged and
Women’s organisation for
women’s rights and
empowerment is the key
We need to search in an ongoing
way for strategies to achieve
substantive equality and women’s
rights. An overarching proven strategy
is the organisation of women to
address women’s subordinate
position in the family, community,
state and market. But, we need to
keep in mind that in addition to
being a strategy, and a means to an
comment: making a point
aLQ – June 2005 31
end, women’s organisation is a
right in itself and of value in itself.
At community level, women’s
projects run by women can be a
starting point in enabling women to
develop the confidence and skills
needed to be agents in control of
their destiny at local, national and
international levels. But, we also
need to realise that not every
women’s project is about empowerment
– women can be
organised in ways that reinforce
their subordinate status or in ways
that do not question the status quo.
And, unless gender equality goals
and goals of women’s rights and
empowerment are consciously
made a part of project and
programme planning, women’s
subordinate position in relation to
men will not be automatically
We need to reclaim our language
around women’s rights and
women’s empowerment, recognising
that while the term gender
has its uses at an analytical level; it
has resulted in no end of confusion
at the level of practice. It has
enabled the ones resistant to
women’s liberation from relations of
subordination to argue that our
concern is women and men and
has led to a shift to projects for men
in the past decade or so.
We need to reverse the trend where
donor organisations believe that a
gender mainstreaming approach
means that they stop supporting
women’s projects and instead put
their money into projects, which
include women and men, because
gender means women and men,
and because men are also disempowered.
Such thinking ignores
that gender is about a system of
power relations between women
and men. We need to accelerate
strategies for women’s empowerment
and we need to develop analytical
and strategic skills to take on
the political battle for women’s
rights and full equality.
We need to get back to basics to
understand that what we are
fighting is a system of social
arrangements and cultural rules,
which provide men greater capacity
than women to mobilise cultural
rules and material resources in
pursuit of their own interests, and
that power relations between
women and men are at the levels of
ideas and practice and, therefore,
we need to challenge both ideas
and practice (Kabeer, 1992).6 We
need to also take into account that
this system, which privileges men,
operates simultaneously with systems
of racial and class domination
resulting in power imbalances of
poverty within nations and across
nations, and in power relations
among women.
We need to rescue mainstreaming.
It can still be a very powerful tool to
advance gender equality goals,
even within current rights-based
approaches to development.
Perhaps, in the end it is not so
much whether mainstreaming is
understood or misunderstood, but
about how it has been manipulated
to do different things by different
people. An approach, a tool, a
strategy, is at the end of the day
only as good as its user. If each one
of us is sincerely and seriously
concerned about ending women’s
subordination, about advancing
gender equality, we will find ways of
going about this, and we will
advance women’s organisation to
this end. But, if we are getting
something out of the existing
gender order as men, who do not
want to give up our power over
women, or as women, who benefit
from the subordination of other
women (for example the ones who
cook, clean and care for our
children), then, we may not be so
keen to end this situation, which
denies human rights to one half
of humanity, so that the more
powerful may benefit. The core
question for all of us is how afraid
are we of change?
1. An earlier version of this paper has been presented
at the SAfAIDS Conference on Gender
Mainstreaming in Swaziland, April 2005. Thanks to
Everjoice J. Win and Penny Plowman for valuable
comments to an earlier draft.
2. Mukhopadhyay, M. 2004. Mainstreaming Gender
or “Streaming” Gender Away: Feminists Marooned in
the Development Business in Repositioning
Feminisms in Development IDS Bulletin, 35:4.
3. Jahan, R. 1995. The Elusive Agenda:
Mainstreaming Women in Development, London and
New Jersey: Zed books.
4. Win, E.J. 2005. Gender-speak and gender mainstreaming:
Time to reclaim the struggle for women’s
rights and justice, unpublished paper.
5. Wheeler J. and Pettit J. 2005. Whose rights?
Examining the discourse, context and practice of
rights-based approaches to development, paper presented
at ‘The Winners and Losers from Rights Based
Approaches to Development’ at University of
Manchester in February 2005.
6. Kabeer, N. 1994. Reversed Realities: Hierarchies in
Development Thought, London and New York: Verso.
Shamim Meer is a feminist,
activist and researcher. For
more information and/or comments
please contact her on
+27 11 837 3239 or at
comment: making a point
aLQ – June 2005 32
Provincial Activities
As part of our ongoing activities at a provincial
level, the AIDS Legal Network (ALN) facilitated
provincial networking meetings focussing on
stigma and discrimination in the context of HIV and
AIDS with various social and networking partners
in 7 provinces, namely Northern Cape, Free State,
Limpopo, Mpumalanga, Eastern Cape, KwaZulu
Natal and Western Cape during April and May
2005. The aim of these meetings was to identify
the realities, as well as causes of stigma and
discrimination; discussing and analysing the extent
to which fundamental rights and freedoms are
implemented and applied; and to collectively
identify potential advocacy and lobbying strategies
to address and respond to prevailing
stigma and discrimination.
The responses to, and feedback from, the various
provinces varied in accordance with provincial realities
and challenges. However, there were a number of
commonly raised issues and concerns amongst all
provinces, including:
 Lack of in-depth understanding of core concepts, such
as stigma and discrimination
 Lack of understanding of differentiation between
vulnerable and marginalised groups
 Lack of knowledge and/or understanding of the legislative
and policy framework pertaining to equality and non-dis
crimination, including Section 9 (‘Equality Clause’) of the
Constitution and the Promotion of Equality and
Prohibition of Unfair Discrimination Act (‘Equality Act’)
 High levels of stigma and discrimination, including
amongst service providers
 Need for strengthening provincial networks to address
and respond to issues collectively
The meetings clearly indicated not only a general lack of
in-depth knowledge and understanding of the causes and realities
of stigma and discrimination, as well as the meaning of
fundamental human rights and freedoms, but also a lack of
information and knowledge about available legislative measures
to address the occurrence of stigma and discrimination in the
context of HIV and AIDS.
…I learned a lot and now I know that every person has
rights…thank you… [Western Cape Participant]
…the major issue I learned was about rights and what we,
as NGOs, can do for our communities… [Northern Cape
…I’ll remember how we take it for granted that we are
aware of concepts…but when we break it down, we learn so
much more… [KwaZulu Natal Participant]
…I learned that the community/society has started
stigmatisation, discrimination and marginalisation and the very
same society must end it… [Mpumalanga Participant]
…the exercise on discrimination versus stigma was a real
brain teaser and educational…you are doing a great job…keep
it up!… [Free State Participant]
…I gained a lot of information about the rights of all
people… [Eastern Cape Participant]
…I learned that it is so easy to violate people’s rights, if one
does not fully embrace terms like equality, dignity and freedom
as applying to ALL… [KwaZulu Natal Participant]
…the workshop was excellent and it was extremely
interesting to unpack the meaning of so many concepts…well
done!… [Western Cape Participant]
…I learned a lot about discrimination and can tell
people about it…people who are still discriminating…
[Limpopo Participant]
…I will remember that I can make a difference…the ALN is
doing an excellent job… [Eastern Cape Participant]
In addition, we learnt in these meetings that there is still a dire
need for further basic human rights education and training and
information on how to access rights and freedoms. Participants
also clearly identified a need for follow up sessions, as well as a
need for education and training specifically on issues of stigma
and discrimination amongst service providers.
…service providers still need to be empowered on basic
HIV and AIDS education, before we can even consider additional
information… [Limpopo Participant]
…these workshops are needed most in disadvantaged
communities where discrimination and human rights violations
are not reported… [Eastern Cape Participant]
…we will invite you frequently to educate our communities
so that there will be less abuse… [Mpumalanga Participant]
…we should have more workshops on human rights and
on the rights of women… [Western Cape Participant]
…I particularly enjoyed your facilitation and humour and the
way in which you allowed participation and respected people’s
views, but challenged them at the same time… [KZN
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A young participant at a recent workshop was
spotted in deep contemplation…