Many people are calling urgently for laws and policies to curtail or prevent HIV/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.
1.1 DEFINING STIGMA
What exactly is stigma anyway? For the sake of this discussion, we will define stigma as:
- A behavior or policy that
- Impacts upon fair and equal opportunities in a wide range of
- public and private sector areas, such as work, housing, security, education and health services, as well as
- personal and community areas, such as marital affections, property and parental rights, group affiliation, security, and kinship,
- Of a person
- Actually living with HIV or ill with AIDS, or
- Associated (affected) with someone living with HIV or AIDS (e.g., family and friends), or
- Perceived to be infected with HIV or have AIDS, or
- Perceived to be at risk for HIV infection or AIDS illnesses.
- Motivated 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.
HIV/AIDS stigma is essentially discrimination based upon HIV status.
In 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.
1.2 WHY DOES STIGMA EXIST?
Core 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?
The 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.
1.3 THE NATURE OF UNCONSCIOUS BELIEFS
Important 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.
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'. Defense of 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 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.
It is not possible for us to influence any long terms changes in discriminatory behavior unless we have the courage to challenge people's core beliefs. It is not a comfortable - nor popular - process. All too often we are so busy worrying that we might offend a community's 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.
It 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.
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, they may also have no words to express these beliefs.
1.4 STIGMA AS AN 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 greatest good for the greatest number of people sometimes requires sacrifice of a minority.
1.5 STUDYING SOCIAL PHENOMENA - THE DANGER OF BIAS
Human 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 people's 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.
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 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.
Social 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.
1.6 PREGNANT HIV-POSITIVE EDUCATORS
For 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.
Stigma 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 discriminatory behavior.
So let us examine some of the possible unconscious (or conscious) beliefs that could explain the stigmatization of those infected with HIV:
2. BELIEFS THAT MOTIVATE STIGMA & COUNTER-ACTIVE MEASURES
2.1 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 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 history.
Many 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.
For 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?
There 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.
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/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 don't understand why people respond with 'irrational' rejection of those infected?
Outdated 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).
So what do we do? How do we counter this basic (and functional, from a raw survival perspective) belief?
2.1.2 COUNTER-ACTIVE MEASURES
We suggest two strategies, both of which we have been applying with great success in Mozambique, in our Positive Living program:
188.8.131.52 Instead 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.
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 (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".
We 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.
We 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.
It is often assumed that those 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 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 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 resources.
It 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.
It is a tragic reality that victims get persecuted, once sympathy has run out (which is fairly soon). People living with HIV or AIDS (PLWHA's) 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, PLWHA's 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 don't like it, and won't 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.
At 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 forth.
The 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 PLWHA's to earn the respect of others through engaging in a productive life, and not wallowing in 'sufferer' or 'victim' sympathy-seeking roles.
184.108.40.206 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 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.
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; (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.
In 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 to survive.
2.2 BELIEF 2: "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 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 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 simply means that it exists, and needs to 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.
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/response-able.
Any 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.
Why? Because, as mentioned before, there is an urgent and powerful need to ascribe blame and shame on whomever is at 'fault'.
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 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?"
Have you ever wondered why it is possible to cause national outrage and reaction to the abuse of 20 young elephants (refer M-Net's Carte Blanche exposé 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 …
The 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 it's 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 city's 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.
Many 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 'internalized 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 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.
We 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.
The 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 perpetuated.
The 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. That's 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 don't understand.
The 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.
So where do we begin in the process of eliminating blame-shame-punishment?
2.2.2 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 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.
220.127.116.11 Acknowledge that individuals have the power to choose to refrain from discrimination, as opposed to placing all power to socialization, and thus removing individual responsibility.
Our legal systems represent how we attempt to define and structure cause-and-effect and responsibility in our behaviors. Prior to the 1960's, 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 person's 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 external influences.
18.104.22.168 Encourage/challenge organized 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 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:
- Sex 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?
- It 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 don't 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 sin.
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/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.
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.
A 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.
However, 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.
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 stigmatization, including internal stigmatization by those 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/AIDS, such as home-based care, caring for AIDS orphans, prevention, and a myriad of other issues.
22.214.171.124 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 stigma directly, by simple actions such as publicly embracing those living with HIV.
Not 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.
This 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?!"
These examples illustrate the often-superficial platitudes and attitudes of leaders in our countries. They have not dealt with the core beliefs they hold.
2.3 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 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: "It's also not in your culture to carry a cell phone, but you've adapted to that with great ease."
The previous story illustrates an important quality of culture: It's about convenience and increased survivability (functionality). At first, there is skepticism, but if it works, it soon becomes 'what we do'.
Culture 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.
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 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.
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 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.
It 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 share equally.
Cultural 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.
The 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.
The 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 calledethnocentricity.
Social 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:
The 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 system continues.
However, 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.
It 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.
However, 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.
For 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 infections.
Before 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 won't 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 don't know.
However, this discussion concerns stigma, not prevention of HIV infection. The point of the above example is that we often make fundamental assumptions without thinking about them.
2.3.2 COUNTER-ACTIVE MEASURES
126.96.36.199 Tell the truth
One 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 or posters.
Instead, 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.
Many 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 failed, predictably.
Communities 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.
This 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 going on.
How 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.
188.8.131.52 Increase efforts to get people tested, and make the benefits of knowing your status explicitly clear
We 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.
Once 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.
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 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 …"
It 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.