exactly is stigma anyway? For the sake of this discussion, we will define stigma
behavior or policy that
upon fair and equal opportunities in a wide range of
and private sector areas, such as work, housing, security, education and
health services, as well as
and community areas, such as marital affections, property and parental
rights, group affiliation, security, and kinship,
living with HIV or ill with AIDS, or
(affected) with someone living with HIV or AIDS (e.g., family and
to be infected with HIV or have AIDS, or
to be at risk for HIV infection or AIDS illnesses.
primarily by the perpetuator (person or policy) of the stigma having
knowledge or a perception (true or false) that the other person is infected
or affected by HIV or AIDS.
stigma is essentially discrimination based upon HIV status.
other words, it is not stigma if 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.
WHY DOES STIGMA EXIST?
questions we need to ask are: What causes people to behave in a stigmatizing
manner? What causes people not to change stigmatizing behavior, 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 those infected
contribute to the perpetuation of stigma?
answer is simple, at least conceptually: At the core of any behavior you will
find a belief (or series of beliefs) that causes individuals or groups to behave
in a specific manner. We need to strip away those beliefs to their core, before
we can effectively counteract stigma.
THE NATURE OF UNCONSCIOUS BELIEFS
considerations include: (a) beliefs can be conscious or unconscious (e.g.,
socialized norms). Many beliefs are not conscious (b) there may be beliefs that
conflict or contradict each other: (c) The relative stress of a situation
influences the extent to which conscious beliefs are put aside, allowing
unconscious beliefs to prevail. At the end of the day, it is the strongest
belief that wins out.
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. Defense of beliefs include its
normal, everybody knows this, weve always done it this way,
Its my culture, and the Bible says so. In other words, there is
often little individualized thought or reasoning to support some types of belief
they are often merely accepted by the individual or group through
socialization processes. Quite frankly, most people would not really be able to
tell you the real reasons why they are discriminating against someone, as they
have not really consciously thought about it.
is not possible for us to influence any long terms changes in discriminatory
behavior unless we have the courage to challenge peoples core beliefs. It is
not a comfortable nor popular process. All too often we are so busy
worrying that we might offend a communitys sensibilities that we do them 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. We suggest that you think
twice before tackling stigma, if your image and popularity is more important to
you than being effective.
is also important to keep in mind that many beliefs have never been discussed,
even during socialization, and are absorbed through modeling and behavioral
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 behavior. 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.
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, they may also have
no words to express these beliefs.
STIGMA AS AN UTILITARIAN SURVIVAL STRATEGY
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 greatest good for the greatest
number of people sometimes requires sacrifice of a minority.
STUDYING SOCIAL PHENOMENA THE DANGER OF BIAS
behavior is not random. Instead, it has a structure and 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 a rational social scientist believes that
an accurate and in-depth understanding of peoples beliefs will allow us to
understand and modify behavior to reduce vulnerability to infection, and also
how to behave fairly towards those already infected with HIV.
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 him or herself, 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 him or herself
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, wrong, and so forth.
scientists whether they like it or not are just as powerfully affected
by their socialization 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.
PREGNANT HIV-POSITIVE EDUCATORS
us, the watershed experience that shattered our perception of accepting blindly
the popular beliefs of why people do what they do in terms of HIV was
meeting one more of a long line of pregnant HIV-positive AIDS
educator/counselors, who knew that she was HIV-positive before falling pregnant.
If these people the ones who have the knowledge and reasons were not
applying what they knew, there has to be something seriously wrong with our
understanding of what is going on.
cannot be understood as a simple or largely conscious behavior. 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 behavior, at the
core of stigma is a set of beliefs, presented as facts, that is creating
let us examine some of the possible unconscious (or conscious) beliefs that
could explain the stigmatization of those infected with HIV:
BELIEFS THAT MOTIVATE STIGMA & COUNTER-ACTIVE MEASURES
BELIEF  1: "If you have HIV you are going to die, so I will not
invest time or resources in you"
means withdrawal of support from those 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
years ago, there were reports that clinics in certain parts of Zimbabwe were
told not to provide any treatment for those 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 myth is irrelevant. What is relevant
is that this report illustrates behavior 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 those
infected is no different from other more personal behaviors. We have all
done something similar at some point in our lives, based upon an assessment of
whether the other person will contribute to our lives in the future.
example, when a friend tells you 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
behavior too, such as expelling family members from the home. Is this any
different, or is it a matter of degree?
are two sub-beliefs in this behavior, pertaining to HIV stigma: (a) 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. Secondly, (b) 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 those scarce resources.
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/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/AIDS and we dont understand why people
respond with irrational rejection of those infected?
and (in our opinion) ineffective health motivation strategies have contributed
directly to the stigmatization of those infected. You may argue that the same
AIDS=DEATH campaigns have emphasized that is okay to have casual contact
and so forth, but this simplistic defense does not take the second reality into
consideration, namely the utilization of scarce resources, for no apparent
benefit (for the group).
what do we do? How do we counter this basic (and functional, from a raw survival
suggest two strategies, both of which we have been applying with great success
in Mozambique, in our Positive Living program:
of using fear as the primary message and motivator, focus upon the effects of
HIV/AIDS (or malaria, poverty, etc) on a desirable future, both by the
individual and community.
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 (i.e., a virus, for
those who have a vague idea of germ theory, which is rare) that apparently can
kill you sometime in the distant future: If I do what you are suggesting (ABC
prevention), I can go hungry today, and tomorrow.
utilize methods where people become aware of long-term future-related goals
which we call the Future Dream - that is then emotionally energized through a
simple process. Our view is that life is only protected and respected - when
it is valued. Furthermore, it is only valued when it (my life) is believed to be
moving towards something desirable, pleasurable, fulfilling. We have found that
when we do this process first before HIV/AIDS educations and awareness
that prevention methods suddenly have relevance and genuine meaning to the
individual. Then the ABC options/choices make sense to the individual, as
HIV/AIDS literally stands in the way of the desired future.
utilize exactly the same process for those people living with HIV, as they are
no different from anyone else in believing that they have no future. (The issue
of internalized stigma is discussed later). If we are to teach those 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.
is often assumed that those infected will do anything to stay healthy, when in
reality this is not true: Many just dont 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 of life what other sustainable reason is there?
belief is that the first thing to die when a person is diagnosed with HIV, is
their future. It dies in the doctors office. The body follows a few years
later, unless the future can be opened up again.
often have you seen or heard an AIDS Sufferer speak to an audience, with
nothing to say except how miserable they are, 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 your
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 - those who disclose their
status publicly perpetuate the belief that living with HIV/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
is imperative that public disclosure is encouraged, but with full awareness of
the impact of such a disclosure. The bottom-line is that, in order to prevent
victimization through stigma, the person living with HIV needs to ensure that
she or he does not utilize the victim image in the first place.
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 those 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, and exemption from
community responsibilities. People dont like it, and wont support it
they have problems of their own. However, when a person any person is
viewed as contributing to the future of the community, this situation changes.
Therefore, the helpless-hopeless AIDS Sufferer image is counter-productive
in the fight against stigma.
a broader social level, we need to focus upon discussing and formulating a
future that is desired. For example, politicians are often prone to focus upon
the ills of the system (or their opponents) without providing the public with
any vision for the future. In the business arena, greater emphasis needs to be
placed on how managing the disease getting involved in taking care of the
health of infected employees is much cheaper than simply ignoring it, and
paying the price in terms of lower productivity, absenteeism, sick leave, and so
essential recommendation of the above is that, regardless of HIV status,
communities will reject and eject members who are considered a non-productive,
non-contributing burden to that group. The exception is the elderly, who have
already made their contribution, and very young children, who do not yet have
the capacity to contribute. Therefore, one aspect of reducing stigma is for
PLWHAs to earn the respect of others through engaging in a productive life,
and not wallowing in sufferer or victim sympathy-seeking roles.
upon the possibility of living with HIV, versus dying from AIDS.
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 your diet towards
immune-supporting nutrition, and attitudinal shifts that support longevity. The
likelihood of a PLWHA in acting to increase the quantity of her/his life is not
high unless the first item increasing the potential quality of life (the why
bother? question) is first addressed.
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 (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, dont expect people to care about you if you do not care about
many profound and largely unconscious ways, the perception that there is
a possibility of an improved quality of life for all involved - real benefits -
when supportive (versus stigma-based) behaviors are engaged, will go a long way
to addressing some of the deep-seated beliefs that a person living with HIV is a
burden to the group, and who needs to be ejected from the group if the group is
BELIEF 2: "HIV/AIDS is a punishment
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 those who claim to be agnostic or atheist,
cannot escape from the socialization of these beliefs through education systems,
the very words we use to explain our reality (right/wrong, good/bad), laws, and
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 simply means that it exists,
and needs to taken into account.
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.
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/response-able.
HIV/AIDS educator will tell you with amazement how audiences seem to
have an absolute fixation on where AIDS comes from. It appears bizarre here
you are, ready and willing to tell them how to protect their lives, their
future, their children, and all they want to know is where on earth this disease
comes from, and insist on spending valuable time on the subject. When you say
that genetic tracing of the virus shows that it originated in specific areas of
Africa, there is shocked outrage, and the most irrational attempts to reject
what is considered objective scientific fact. This is not only from the average
person this rejection and outrage it also comes from those who are
supposedly highly educated too.
Because, as mentioned before, there is an urgent and powerful need to ascribe
blame and shame on whomever is at fault.
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 behaviors, 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?
you ever wondered why it is possible to cause national outrage and reaction to
the abuse of 20 young elephants (refer M-Nets Carte Blanche expos a few
years back, which resulted in the largest national post-apartheid protest
response recorded), but it seems to be mission impossible to get widespread
public support for the plight of hundreds of thousands of child-headed
households (AIDS orphans)? It is a very useful exercise to ask people
response we got was simple: Animals are innocent, people are not. With people,
someone can be blamed, which absolves us from any responsibility to help. Case
in point: There was a report several years ago, that a terrible storm caused an
oil ship spilt its oil on the beaches of Cape Town, causing major catastrophe
with the penguins population. At the same time, there was a terrible fire that
swept through a large informal settlement, leaving thousands of people
destitute. There was only enough money in the citys treasury to deal with one
of the two disasters. They chose to save the penguins. Some people may find this
amusing, but it illustrates the deep-seated belief we seem to have that, when it
comes to bad things, someone is to blame, and they need to pay the price.
We seem to only have compassion for those we consider innocent.
people living with HIV will probably agree with this, especially when it comes
to explaining stigma behavior originating from others. However, although this
does indeed seem to explain some aspects of stigma, those living with HIV should
keep in mind that they share in this belief. This is what is referred to as
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 those infected with HIV, we could win the next
election. That is not going to happen, simply because the overwhelming majority
of those living with HIV feel that their infection is their fault, and
that they are to blame, and that they need to be ashamed. Those that
refuse to accept the blame tend to try to blame someone else, which is
probably the basis of revenge infections. Regardless, the behavior is
based upon blame/shame, which in turn is based upon the belief that bad
things need to be punished.
are not sure where this fault/blame/shame phenomena is strongest society, or
those infected. It is probably evenly spread, with the one sector merely feeding
and supporting the other in a co-dependant symbiotic manner.
bottom-line is that most people accept this cause-effect
(blame-shame/punishment) belief, including many of those who fight stigma or who
care for those infected. In many stigma forums, the process merely involves the
shifting of blame and shame, and consequently punishment. The problem is merely
need to fix stigma through punishing those who blame/shame others,
is no different than trying to punish murder by hanging. Capital
punishment serves no functional purpose apart from making us feel self-righteous
and in control because we have had some form of revenge, despite the fact that
there is no evidence at all that it actually reduces the incidence of murder. It
just does not work as a deterrent. Thats why the South African and Mozambican
Constitutions are against capital punishment. In the same way, we cannot
counteract stigma by committing the same crime to prevent it. We need to
offer an alternative solution: Laws and policies should ideally support
a shared ideal and/or value system, and not be a band-aid measure to control
something we dont understand.
issue of blame-shame-punishment is not unique to HIV/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 happen to people, that is
controllable. For example, there is a belief that if we can pin-point 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, and blame-shame-punishment 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.
where do we begin in the process of eliminating blame-shame-punishment?
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 world-view. 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 belief or the other). This is how wars are justified.
that individuals have the power to choose to refrain from discrimination, as
opposed to placing all power to socialization, and thus removing individual
legal systems represent how we attempt to define and structure cause-and-effect
and responsibility in our behaviors. Prior to the 1960s, the emphasis was
upon individual blame. There was little scope for mitigating
circumstances. Then, with the advent of Behaviorism (a school of psychological
theory that basically said that the only thing that was real, was behavior
thoughts were irrelevant), social influences (conditioning) rose to the
fore, and we started to examine how a persons childhood influenced later
behavior. This continued for many years, and reached a climax in a famous case
where the defense lawyer persuaded the jury that a murderer had no option
based upon his childhood influences but to murder the victim. In other
words, the murderer had no free will everything was determined through
socialization. The judge agreed, but with a very important twist: If this was
true, then society was to blame. As the jury was the representative of
society, he sent the jury to prison! As you can imagine, people especially
juries were a little more careful about placing the blame entirely on
organized religion to not only examine their emphasis on blame-shame-punishment
(versus compassion), but also to do so actively and publicly.
is probably a good time to introduce religion 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 you add religion to sex (and HIV is after
all a sexually-transmitted disease for most people in the developing world), you
get a rather heated debate that is rarely rational. If we may summarize:
is bad and punishable unless sanctioned by the representative of the
religion (i.e., marriage) Therefore, HIV/AIDS is somehow a punishment for
some or other sexual sin You see we told you so! Therefore,
HIV/AIDS is viewed as the physical proof of sinful sexual behavior. So
why should this matter?
matters because people want to go to Heaven. For many people, peace, joy,
and fulfillment are not possible in their physical circumstances, nor can
they see this as being potentially possible. So they dont try to get it
here, and they seek it there, with there being in 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/AIDS is proof of
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/AIDS. It has been our observation that these people focus their
values and beliefs upon love, compassion, forgiveness, and that they do not
place much energy or time on blame-shame-punishment. They are too busy making a
difference to engage in dehumanizing activities.
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.
good friend and Methodist Minister refers to the emphasis upon
blame-shame-punishment in dealing with people living with HIV as Victim
Theology. He suggests that we start to focus upon a theology of self-worth,
love and compassion. For those that find that inconceivable, it is not too
difficult: Historically, theologians have selected segments of text to support
the prevailing power focus, such as males being superior to females. Text that
contradicted such preferences was de-emphasized as being of only
historical relevance. For example, most of the abominations in the
Old Testament were discarded as being of historical interest only, except
for one or two which supported the interests of the prevailing power elite.
this is not a discussion on religion, and the purpose of the above is to
illustrate the pliability of religious dogma according to the priorities of
those who purport to represent such values and dogma.
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 stigmatization, including
internal stigmatization by those infected.
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/AIDS, such as home-based
care, caring for AIDS orphans, prevention, and a myriad of other issues.
politicians and other leaders to be conscious of how they reinforce stigma
through their words and actions, which contradict non-discriminatory policies
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 stigma directly, by simple
actions such as publicly embracing those living with HIV.
too many years ago, the leader of a political party in Gauteng died of what was
rumored to be AIDS. The party leadership issued a statement denying this.
However, what was shocking was that the reason they wanted these rumors to end
was that it shamed the party and the family of the deceased. The same
party strongly advocates against stigma.
is not too dissimilar to a charity event where a woman living with HIV publicly
announced her status to the crowd, in an effort to overcome stigma in the
community. The political representative of the area had wonderful words of
encouragement to the crowd, congratulating her on being so brave. As he embraced
her on the stage he whispered into her ear How could you shame you
family and community like this?!
examples illustrate the often-superficial platitudes and attitudes of leaders in
our countries. They have not dealt with the core beliefs they hold.
BELIEF 3: "Its the way we do things"
(Culture and tradition should not be questioned).
were doing a talk a while ago, and during the question-and-answer section 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: Its also not in your culture to carry a
cell phone, but youve adapted to that with great ease.
previous story illustrates an important quality of culture: Its about
convenience and increased survivability (functionality). At first, there is
skepticism, but if it works, it soon becomes what we do.
and traditions include a wide range of behaviors and activities, including
language, dance, rituals, how we deal with illness and death, and the regulation
of relationships, gender roles, and sexuality.
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 hand you preserve the unique qualities of a group of people, and on the
other hand such protection can reduce the flexibility of that group in the face
of change, thus reducing their ability to survive.
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 moment that the need changes, the tradition ceases to
fulfill any survival function. However, this does not mean that the behaviour
ceases often, we forget why we were doing it in the first place, so we
simply continue anyway.
is also important to realize that every tradition serves specific groups more
than others, and will be protected by those 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
traditions and norms are also comforting: 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 effective.
harsh reality is that you cannot effectively protect a culture or tradition.
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 behaviors and norms. The way that they change is revealing: When a norm
is no longer functional, those that hold on to it die out, while those that
change, survive. The only way to allow some language or tradition to survive is
to incorporate it into a newer tradition or language.
direction of this survival of the fittest is not always obvious or
anticipated, and people find ways to adapt in unique ways, thus ensuring
continued diversity. What is important to note about this survival of the
fittest process, is that it is geared to the survival of the group, not the
individual. People do what they have to do to survive collectively
according to their resources and situation. To assume that a group different
from yours must do it your way, is called ethnocentricity.
responses to HIV/AIDS prevention strategies in the developing world are a
classic example of this. This example will no doubt will stir up controversy,
which is an excellent manner to force unspoken beliefs to surface for
identification and clarification. We present this explanation for the failure of
specific types of prevention methods as the basis for debate, not as a
definitive answer or point of view:
developed world believes that people in developing countries have the same
system of survival: In the more affluent developed world, the sick, the young
and the elderly can fall back on the welfare system, funded by a taxed society.
In the developed world, the priority is therefore to ensure economic growth,
employment, and consequent adequate tax-derived funds to ensure that the support
in the developing world, this type of economic welfare safety net largely
does not exist. Instead, the family nuclear and extended provides such
support. In the developing world, the continuity of the support system depends
entirely upon procreation, to ensure that there are enough children to provide
support when you get old or ill.
is therefore according to a developed world perspective and realities
logical and factual that condoms will (and should be) the primary form of
HIV prevention, as it not only does not interfere with the (economic) support
system it is relatively cheap - but it also ensures that the system
continues into the future, by reducing the (costly) illness burden on the
system. You will notice, for example, that in most debates and discussions
regarding medical treatment or prevention strategies, that there is a great deal
of focus upon the economic costs of the proposed options.
from a developing world perspective, condoms directly prevent the continuity of
their support system children and procreation by preventing conception.
The greatest obstacle to convincing people to wearing condoms in the developing
world is How can I have children if I always wear a condom? Good question
find a workable answer to that one, and we may have a solution to ensuring
the continuity of the support system, and preventing HIV infection. Until we
solve that dilemma, people are going to have sex without a condom. Exceptions to
this and research into condom use suggests this is the case are sexual
encounters with non-procreational intentions (youth and commercial sex workers).
In these groups, condom promotions have had great success. However in sexual
interactions with a procreational intention (e.g., committed or married
couples), condom promotions have had little impact.
those who dispute this and we are sure there will be many we suggest
that you look at the Ugandan experience, often touted as an example of how the
other forms of prevention (be faithful to your partner, delayed onset of sexual
activity for young people) can produce effective results. In Uganda, condoms
were a minor component of the prevention strategies that led to declines in
the outrage begins, let us state clearly that we believe that condoms are indeed
a critical component of prevention, especially in high-risk areas such as
commercial sex and pre-marital relationships. However, based upon the evidence,
we have not seen condoms make a dent in infection rates anywhere else. This is
not because we do not support condom usage it is because many people wont
use them, no matter how much we have supported their use or made them available.
Perhaps condoms would be viewed as a viable prevention method if economic and
social systems were different? We dont know.
this discussion concerns stigma, not prevention of HIV infection. The point of
the above example is that we often make fundamental assumptions without thinking
of the only forces that we can rely upon to encourage communities to adapt to
the new realities of HIV/AIDS, is a full awareness of those 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
we refer to direct awareness of the realities of HIV/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.
countries missed a critical opportunity to promote prevention in the early years
of the epidemic, because the leadership was afraid of spreading panic. They were
afraid of the economic consequences (e.g., investor confidence, tourism) if the
general public saw what AIDS really looked like. For this reason, certain public
broadcasting stations had a policy of not showing any person with AIDS-related
illness. It was kept hidden and sanitized. They reckoned that they convince the
public to change their behavior through reason and information alone. This
will continue to stigmatize those infected until such time as it can no longer
function without those infected. In other words, until there are simply too many
people to hide away, and until those infected and others knowing that that
they are infected are filling important and valuable roles in society.
is not a theoretical concept: In almost every country affected by HIV/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
burn-out, which is a process of giving up on trying to deny what is really
can we accelerate this stigma burnout? I.e., how can we short-circuit this
process of denial, so that the stigma ends sooner? One of the primary methods is
for people to see and know the truth of what is going on. This means greater
emphasis upon HIV testing, and greater public profiling of people living with
HIV, both healthily and with illness the whole range.
efforts to get people tested, and make the benefits of knowing your status
need to increase our capacity for HIV testing, and we need to strengthen the
benefits of getting tested (discussed earlier). As things stand right now, a
tiny fraction of those infected actually know about it, and with the current
facilities, this is not going to change much.
we have a more realistic view of HIV/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 on a whole people will find
solutions. None of this can happen if they do not know see, hear, touch
the realities that threaten their survival.
do not respond to abstracts, nor to statistics. They respond to real-life
reality, which affects them directly.
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.
order for us to be effective, we must challenge peoples 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.
is only one solution, if we hope to make any difference at the social level. We
must challenge peoples 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 those 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
is small comfort to those infected who have been stigmatized 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.
Empowerment Concepts - www.empow.co.za