By Mpho Putu

Introduction and Background

HIV/AIDS is a reality, and it impacts everyone in Africa. At bus stops and street corners, in restaurants, parks, schools, universities, cities, and villages, talk is about a friend who has just been infected or has passed away: a municipal councilor, a politician, a musician, a soccer player, a teacher, a father, or a mother. Everyone is affected. What does it mean to face the constant lurking threat of HIV infection? What does it mean to be surrounded by death—of friends and family—from AIDS? These are just two of the profoundly compelling questions people have grappled with in forums in South Africa over the past two years. Those forums were organized by the Institute for Democracy in South Africa (IDASA). Other forums have been held in Botswana under the sponsorship of the International Women’s Democracy Center.

Two facts about HIV/AIDS stand out. First, the disease disproportionately affects sub-Saharan Africa. This region, with 10 percent of the world’s population, currently has 70 percent of the 40 million individuals suffering from this disease worldwide. Second, the disease most strongly affects the most economically productive layers of society. Commonly, disease finds its victims among the weak, the elderly, and the economically less productive. HIV/AIDS, however, commonly strikes those aged 15–49, the years during which people are contributing most to the economy of their households and their countries, as well as raising their children.

As a result, HIV/AIDS has a crucial impact on security in Africa. Security, however, refers not to the ability of state power to maintain law and order, but to what the well-being of members of society requires. The United Nations Human Development Report identifies the components of human security as economic security, food security, personal security, community security, and political security. HIV/AIDS impacts all of these. Its devastating effects undermine state functions like education, health, and social development, leaving behind millions of vulner¬able orphans with no means of support, causing economic crises, and threatening political stability. A weak society and a weak state (like those of most African nations) are vulnerable to political conflict, and this, in turn, creates a fertile ground for the further spread of the pandemic.
What Is the Issue?

The issue book HIV/AIDS: What Should Be Done provides people with a framework for deliberative discussion on the issue. The framework takes people through the consideration of three different approaches, or perspectives, regarding the issue:

Approach 1: Focus on the people living with HIV/AIDS

Approach 2: Improvement of quality of life

Approach 3: Prevention through education

What we have observed and learned in the forums, both in Botswana and South Africa, is that most of the people who came to these forums did so because the issue was personally relevant. They expressed this through the stories they told. Tellingly, most people who attended these forums were young and well aware that the pandemic takes its toll on their age group. At the very beginning of the forum, this intense personal connection to the issue set a serious tone for the owner¬ship of the issue that characterized the deliberation process. Interestingly, mod¬erators were impressed with the contrast between the opening discussions—which were emotional, serious, and often intense—and the relief participants later expressed at being able to talk about the issue and to consider choices.

The forums asked the question “What bothers you about HIV/AIDS?” Many acknowledged and recognized the pandemic as a problem and mentioned other concerns associated with it, but most still refuse to accept the reality of HIV/AIDS. Instead, some people blamed the sickness on witchcraft, on punishment from God, or on ancestors’ punishment (against people who have moved away from traditional practices). Some blamed it on infrastructural development (new tarred roads that connect distant rural areas and cities in Botswana), on poverty, or on the government. In South Africa, some participants could not understand why the government has been unable to find a cure for AIDS when technology and medical research is so advanced; others thought it a strategy by governments to reduce the population.

Many expressed concern that the government is not doing more to combat the sickness. One example cited was the slow delivery of anti-retroviral drugs and other medical care to those living with the virus, especially pregnant mothers and children. At the same time, there was an acknowledgement that the media, government, and many institutions working on HIV/AIDS issues have managed to provide clear messages and extensive information about the disease. People know the facts; millions of condoms are available in public places; but people are continually surprised by the enormous and ever increasing numbers of newly infected cases. Many conclude that the message is not taken seriously. There is a sense that “it will not happen to me.”

Poverty and lack of education also contribute to ignorance. Many people die in silence, unwilling to come out and talk about what the pandemic does to them emotionally, spiritually, economically, and so on. Participants viewed this as a very complicated problem that affects various aspect of life, labelling it “the wicked issue.” Many acknowledged the epidemic, yet talking about it is avoided, and no one, especially the elderly, is prepared to reveal the true cause of sickness or death when it happens in the family. Sex and sexuality are still considered taboo topics in most African communities. “If we are not careful, our nation will soon perish. We must break the silence and tell the young people to do something positive to prevent the further spread of this killer disease,” said a 79-year-old man. This HIV/AIDS issue has brought feelings of fear, despair, depression, and defeat to many of the participants. At the same time, we discovered that it is not easy for people to deliberate on their experiences freely because of stigmatization.

The level of discussion and the quality of deliberation are largely determined by the level of education and standard of living. In poor communities, there is less ability to think critically and thoroughly about issues. It seems that the level of education has a real impact on the way people comprehend and frame these critical issues. As an example, people are concerned about the sickness and the deaths but cannot make a drastic change in behavior to prevent the disease from escalating. As such, the perception in most forums was that HIV/AIDS is a personal and individual problem, involving neither the government nor the community. Thus, people tend to keep it to themselves.

Many participants urged that people take responsibility for their lives. In their minds, the change of behavior is central to reducing the pandemic. Many others, noting that poverty, poor diet, and lack of medical care appear to be factors in the onset of the illness, urged the government to accelerate improvements in quality of life. Others urged the education of young people, truck drivers, refugees, and migrant workers.

Many people were apparently confused by the current debate among medical doctors, scientists, and professionals about HIV/AIDS. The debate is focused on the causes of HIV/AIDS, the efficacy of condoms, and the safety of anti-retrovirals. Disagreements continue between various stakeholders, including medical practitioners, pharmaceutical companies, governments, and HIV/AIDS activists and advocacy groups. This sense of confusion surrounding the facts about the disease has been exacerbated by the failure of governments and elected officials, especially in South Africa, to acknowledge and speak publicly about the scourge of HIV/AIDS. Some par¬ticipants noted that some government officials and high-profile members of the community had died, yet the true cause of their sickness and death remains unknown, only speculated. This often leaves citizens wondering whether HIV/AIDS is real or not.

As mentioned earlier, the deliberations on HIV/AIDS vary from forum to forum. In the discussions, many of those who are infected and therefore most affected by the disease often stated that the government should address their present pressing needs. They advocated the immediate provision of such basic necessities as food, water, shelter, and medical care. The reality of the pandemic and death compels them to act as with full rights, by demanding that the government meet its obligation by providing for their needs and protecting their right to life.

A strong sense emerged from the deliberations that unless the government considers HIV/AIDS an emergency—that is, by committing enough resources to procure treatment and to render sup-port and care for the poor—the future appears grim. As a result, HIV/AIDS is seen as a developmental problem of great complexity, requiring strong leadership and political commitment to reduce its effect.

In contrast, some participants, especially those from civil society organizations, argued that the HIV/AIDS issue is not simply about a virus that requires only medical intervention. Rather, they contend that the problem requires a rights-based approach, which significantly extends the responsibilities of the actors engaged in prevention and treatment. A rights-based approach means determining the needs of those infected and affected by HIV/AIDS and ensuring that their human rights are asserted and respected, what-ever their community’s or government’s view of the disease might be. The belief is that using a human rights framework to understand and analyze HIV/AIDS increases the scope of responses to the pandemic.

The forums provided participants with an opportunity to appreciate the broader implications of HIV/AIDS. Among other things, participants thought that the pandemic challenged them to consider extraordinary ways and means of dealing with it. At the core of this initiative is an emphasis on why and how political institutions, civil society organizations, and businesses should take the lead in combating the disease. It is clear that civil society and development professionals believe that the commitment to fight HIV/AIDS must emanate from leaders who are dedicated to human rights and who endorse sound policies and implement them justly and effectively. Everyone must take the initiative. Those who are HIV negative must continue to lead healthy lives and minimize their risk of HIV infection, and those who are positive must be counselled about risk reduction and ways of living positively with their HIV condition.

At the End of the Forum

Many people left the forums with the belief that something could be done. Many thought they had found a place where people were willing to talk and listen to them about this most personal and complicated issue. Most important, they saw the need to continue talking about HIV/AIDS in clubs and churches and with their friends.
Future Plans

IDASA plans to hold a number of forums in South Africa in disadvantaged and underprivileged communities, in high schools, and with Citizen Leader groups with whom we work. We have recently been invited again by the Washington-based International Women’s Democracy Center (Barbara Ferris) to continue with the work in Botswana, teaching issue framing, naming, and moderation, as well as holding some forums.

Mpho Putu works with the Institute for Democracy in South Africa.