SAR, Vol 12 No 1, November 1996
CONSPIRACY OF SILENCE
BY RICHARD B. LEE
Richard Lee is a professor of Anthropology at the University of Toronto.
"First we were at war; now we have freedom, but now we have this new war. In the old war there were soldiers who were the enemy, but in this war there are no soldiers in sight." - Ovambo woman in Namibia speaking about AIDS.
As the HIV-positive rates continue to climb in the SADC countries, there is a growing alarm that the AIDS epidemic may cancel the hard-won gains of the post-Apartheid era and turn into a catastrophe that will subvert the best development efforts. In parts of South Africa, Namibia and Botswana one in every four adults aged 19-44 is HIV-positive, a rate rising to close to half in parts of KwaZulu-Natal. Dr. Marcus Shivute, the Namibian Ministry of Health special AIDS advisor, announced in June that henceforth AIDS patients would no longer be accepted in hospitals as inpatients. They would be cared for in their communities and treated on an outpatient basis. Otherwise, stated Shivute, by the year 2000 one-hundred per cent of all hospital beds would be occupied by AIDS patients.
It is not for lack of effort by governments that the numbers are still rising. All states in the region have mounted massive publicity and education campaigns, in schools, workplaces, and in the media, with free condoms available at clinics and health posts. Citizens of even the most remote areas - such as the San areas of northern Botswana and Namibia - are well aware of the dangers of AIDS and the means of combatting it. Botswana's AIDS office has been particularly effective in putting out straight-talking pamphlets and posters in campaigns that target vulnerable teens and young adults.
In spite of these massive campaigns and the dire projections, critics have faulted the governments for their lack of political will in confronting the crisis. There is a deceptively calm air surrounding the AIDS epidemic in regional capitals such as Windhoek, Gaborone and Pretoria.** On a recent visit to the region working with Dr. Ida Susser, a medical anthropologist from Hunter College-CUNY and sponsored by the Fogarty Foundation and Columbia University School of Public Health, we found at least five factors contributing to the calm, factors that unfortunately also hinder ongoing efforts to bring the disease under control.
* The private nature of the disease
* The intense stigma still attached to it
* The complicity in levels of government in this conspiracy of silence
* The resistance of key sectors of society such as the churches to mobilize their energies for the AIDS fight.
* The absence of a strong presence in the emerging civil society of volunteer organizations and self-help groups of HIV-positive people taking care of each other and educating the wider public about the dangers.
* * *
One of the mysteries of AIDS in southern Africa is that although AIDS is recognized as a major threat and epidemiologists are tracking the high rates of seroprevalence (through blind testing at Ante-Natal and STD clinics), on the ground very few people appear to be dying of AIDS. Instead people are said to be dying of "a long illness" or "unknown causes." The word "AIDS" is in everyday use as a general problem but almost never in reference to any specific individual. Who has the disease remains a closely guarded secret, a secrecy which extends even to medical practice. A Namibian Ministry of Health official told of the intense pressure families exert on physicians to omit all mention of AIDS when filling out the death certificate. This complicity of silence even extends to high government circles. At least one head of state in the region is known to have lost an adult child and a close associate to AIDS, but there was no mention of the disease in the extensive media coverage of the deaths and funerals.
The source of this secrecy is the intense stigma attached to AIDS. To have AIDS is regarded by the majority of people as a source of shame, and individuals make efforts to conceal the nature of their illness, even from their spouses. Or if the spouse knows the wider community is kept in the dark. When the information flow is so constricted, conditions are ripe for wild rumours and misinformation, and these in turn are met by further denial and concealment. By the time the frank symptoms of full-blown AIDS make secrecy impossible, the infection may already have been transmitted to spouses and lovers, as well as an opportunity lost to educate the public about the dangers of the disease.
One of the pioneer campaigners in the AIDS fight, Francistown (Botswana) Mayor, Iqbal Ebrahim, notes the importance of breaking the silence, the use of what he calls:
"scare tactics: actual AIDS victims who are willing to bare their souls. Permission should be sought from those in the final stages of their lives to use themselves, upon death, as examples to be quoted (At present people only whisper in hushed tones at funerals, debating the cause of death). ... At present people say to us, show us one person who has died of AIDS.' We can't because of the secrecy."
Widespread concealment is not without grounding in principles of medical ethics. The distinguished Medical Ethicist, Dr. Trefor Jenkins of Wits University in Johannesburg, notes that the handling of AIDS by medical personnel lies at the intersection of two basic but contradictory ethical principles: the patient's right to privacy and the public's right to be protected from danger. Because of the individualistic nature of medical practice the physicians' guidelines tilt towards the individual over the collective rights, reinforcing dangerously the concealment of HIV/AIDS and the possibility of its spread.
Patients' fears may be well-founded. Examples of victimization and banishment of HIV-positive people have occurred. In Durban townships homes known to harbour AIDS patients have been torched by vigilantes; and elsewhere there is a general anxiety that revealing their illness will result in ostracism by the community.
The tragedy of this culture of concealment is that often the individual has to bear alone the heavy psychological burden of knowing that they are carriers of the disease. Maria Kaundjua, a Lecturer in Nursing at Onandjokwe Hospital, Ovamboland, believes that this concealment may have a significant impact on morbidity. Unable to seek emotional or practical support, HIV carriers more quickly develop the frank symptoms of AIDS and more quickly succumb to the disease.
Why is AIDS so much more stigmatized than say, TB or even other STDs, such as gonorrhoea since both are widespread? This has puzzled researchers and much further study is required. But key societal institutions - for example, the church and the family - deserve scrutiny. In Namibia during the long and brutal South African occupation the Churches were among the staunchest opponents of the Apartheid regime and today enjoy widespread support. Among the Lutherans, the clergy and church hierarchy are almost entirely decolonized, with the great majority of positions occupied by Namibians. But whereas the Lutherans in Europe are liberal on issues of gender and birth control, the Namibian hierarchy has strongly resisted pressure both from below and from their sister churches abroad to accept a women's right to choose and to adopt condom use as a major protection against AIDS. As one senior minister commented
"Our basic life message is based on the principle of one man, one woman, so recommending condoms would be a contradiction of our basic message.... Some people say that the church will punish those who use condoms. That is not so, but neither will we advocate them."
This senior official acknowledged that a number of clergy took an even less sympathetic view and than he did, preaching that "If you are HIV positive you are evil. You have been sleeping around, and now you are paying the price." The official agreed that secrecy and concealment were a major problem and that few if any people acknowledge the disease. He added the revealing statement that, in spite of the national statistics "I am 100 per cent sure that half our pastors have never seen an AIDS patient," unaware that the churches own policies and doctrines may be a major factor contributing to the pastors' ignorance and the wider culture of concealment.
Another significant source of the problem lies in the area of child rearing. Many people interviewed acknowledged that traditionally parents and children maintained an extreme avoidance of any discussion of sexual topics. As a result children grow up knowing very little about their anatomy and intimate behaviour; yet a majority become sexually active in their mid-teens. It was left to the government and the schools to pick up the slack. One result is that there is a widely reported view among teenagers in the region that AIDS is a myth, a government/Imperialist propaganda ploy to make teenagers conform to an outmoded moral code. In Durban townships it was it joked that AIDS was the acronym for "American Invention to Deter Sex." In interviews parents of children at risk repeatedly referred to the need for change in this area and many described the opening of communication with children as a major step forward in their family's battle to combat the disease.
Because of the tabooed nature of the subject of both sex and AIDS as a cause of death there remains an artificially wide gulf between the two ends of the AIDS continuum. The concealment of AIDS as the cause of death and the lack of frank discussion of sexual matters means that the links in the causal chain that are central to the epidemiologist's understanding of the disease become two distinct and unrelated discourses in popular belief.
Thoughtful observers in the region agree that it is of great importance for the effectiveness of campaigns that more HIV positive-people be encouraged to come forward and tell their story: to show that there really is a disease and it has no cure, and that it is possible to live a productive life even if you are infected. Several interviewed used the phrase "coming out" to describe the process that was needed, although the current wave of homophobia in countries in the region such as Zimbabwe make the analogy between Gay Rights and AIDS not likely to win converts.
There are some promising signs at the grass roots. In all three countries visited there are major movements to set up communities of AIDS patients, where they can give each other moral and practical support along with, in later stages, hospice care. A tiny handful of HIV positive persons have appeared on television and radio to tell their story and these acts of courage have had a powerful impact on the public consciousness. The major social-political groundswell that will be necessary to bring the epidemic under control begins with the acts of individuals. We saw boxes of condoms on the night tables of fourteen year-olds in Ovamboland. The sociology department at the University of Botswana has made the study of AIDS part of the core curriculum. And in locations as diverse as the remote San areas of northern Namibia and the faculty clubs of the region's universities we met individual women (and some men) who are consciously changing their behaviour, choosing the partners with great care or deciding to forgo relationships if the partners are not absolutely committed to the use of condoms.
Finally governments, by redeploying scare resources, could do much more to lessen the spread and destructive force of AIDS. Health professionals noted that counselling services in hospitals are woefully understaffed. People receive the news of their blood tests in a brief interview and are sent back into their communities in shock and with almost no followup support. Governments could put resources here, as well as into community-based AIDS hospices, job creation, and housing. In fact some read the recent Namibian decision to transfer the burden of AIDS care onto communities as not simply a callous act of neo-liberal cost-cutting. Rather redirecting health-care resources to communities is seen as a means of raising the visibility of the disease, making evasion and concealment impossible. Only when the magnitude of the problem is clear and the terrible stigma overcome will it be possible to make the critical behavioral changes that will prevent the further spread of AIDS.
** In fact the biggest story in Pretoria was the barrage of criticism of the Ministry for Health for spending a staggering R14 million on a lavish production of "Sarafina!" which was supposed to carry the AIDS message but which closed after a few performances.
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