When Bodies Remember: Experiences and Politics of AIDS in South Africa / Edition 1 available in Paperback
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When Bodies RememberExperiences and Politics of AIDS in South Africa
By Didier Fassin
University of California PressCopyright © 2007 The Regents of the University of California
All right reserved.
Chapter OneAs If Nothing Ever Happened
The past will always be a powerful presence in the present.... For those of us who are survivors of the past, it is important that we do not forget. ZAKES MDA Preface to John Kani, Nothing but the Truth
"WE CANNOT AFFORD TO ALLOW the AIDS epidemic to ruin the realization of our dreams. Existing statistics indicate that we are still at the beginning of this epidemic in our country. Unattended, however, this will result in untold damage and suffering by the end of the century." At the Maputo AIDS Conference in 1990, Chris Hani, the exiled charismatic leader of Umkhonto weSizwe, the armed wing of the African National Congress (ANC), thus shared his vision of a menaced future. At the time AIDS data for South Africa seemed reassuring. Whereas between 10 and 20 percent of the adult population of central Africa were HIV-positive, annual surveys of major South African cities gave figures below 1 percent. Some specialists wondered how to explain this relative immunity: did the country have an epidemiological profile similar to Western nations, where specific groups, mainly homosexuals and heroin addicts, were the most exposed to infection, ratherthan to African nations, where heterosexual transmission was threatening the population at large? That year, after four decades of apartheid rule, the thirty-year ban against opposition political parties was lifted and, after ten thousand days in prison, Nelson Mandela left Robben Island. The transition to democracy was under way. It would be completed in 1994 with the first free democratic elections the country had ever known. The "new South Africa" could begin. A few months before, however, Hani, who had been secretary-general of the South African Communist Party (SACP) since 1991, was assassinated by a "white extremist." He had continually called for peace and reconciliation, in a period when the issues facing postapartheid South Africa were negotiated in a climate of tension and violence.
Ten years after the Maputo call to mobilize against the scourge of AIDS, as I started my research in South Africa, the country had become the world's epicenter of the pandemic. According to the international agency UNAIDS, in 2000 there were an estimated 36 million HIV-infected persons throughout the world; 25 million of them were on the African continent, the vast majority in sub-Saharan Africa. In the Republic of South Africa alone there were 4.5 million cases, for a total of 43 million persons. In other words, more than one infected person in ten worldwide was a South African, and more than one South African in ten was infected. A Department of Health survey conducted the same year found a nationwide rate of seroprevalence among pregnant women of 24.5 percent. The figure was as high as 36.2 percent for the province of KwaZulu Natal, whose capital is Durban, and 29.4 percent for the province of Gauteng, which encompasses Johannesburg. Ten years earlier the figure had been 0.7 percent. The effects were already showing in mortality rates. A Medical Research Council study found as many deaths from natural causes among persons ages 30 to 40 as in the 60 to 70 age group: instead of the usual regular increase of mortality from childhood on, the graphs were showing unprecedented plateaus. The proportion of deaths due to AIDS was estimated at 20 percent for all adults and 40 percent for persons ages 15 to 49. Projections from the data gave even greater cause for alarm: between 1990 and 2010 life expectancy at birth could decline from sixty to forty years. Most of this dramatic evolution affected the so-called African populations. Five years later the situation has worsened: almost 6 million persons are estimated to be HIV-positive, the rate of infected women in the annual antenatal survey reaching 27.9 percent. But let us go back to the year 2000.
At Baragwanath Hospital in Soweto, the largest hospital on the African continent, which was recently renamed after Chris Hani, HIV infection had for so long been part of the daily work and life of all medical and paramedical staff that it was no longer categorized as a specific pathology, which would justify placing patients in the infectious disease ward. In gastroenterology and pneumology, in obstetrics and pediatrics, a majority of patients were HIV-positive. The infection had become one ordinary feature of the pathological profile, regardless of what service patients were in. Moreover, barring complications, persons living with AIDS were rarely hospitalized, because other than through clinical trials no antiretroviral drugs were available for them. Very few persons with AIDS were admitted to the few charity hospices in the township to live out their last days. Most would die at home, with at best a few visits from a volunteer from a neighborhood humanitarian association. Medicine could do nothing for these people. When their families brought them to the emergency room in the terminal stage of the disease, they were usually sent back home. Ambulance companies were increasingly unwilling to transport these undesirable patients.
In one decade the prediction announced in Maputo had thus been realized. The dream of a democratic renaissance had become the nightmare of a catastrophe foretold. Delivered from the violence of apartheid, South African society had fallen prey to the disaster of AIDS. Commentators have noted the simultaneity of these facts, and it has become commonplace to say that the fight against the disease is the new battle that must be waged now that apartheid has been vanquished. Many people assert that one tragedy has been overcome only for another to take its place. On the heels of political terror has come biological horror. The same collective strength and resources must thus be mobilized in this new struggle. And, indeed, some of the actors of yesterday's struggle against apartheid are today fighting on the new front. But are the two realities as separate from each other as is often suggested, or are they irremediably entangled? Do they tell two different stories or the same one? To ask a symmetrical question, is it necessary to think of apartheid and AIDS as comparable phenomena with similar dynamics? Looked at somewhat differently, do they pertain to two sets of politics or to one?
Among the many posters designed by the Treatment Action Campaign in its mobilization for access to antiretroviral drugs, one, cosigned by the Congress of South African Trade Unions (COSATU), has been especially successful. On it two photos are juxtaposed. The first is titled "15 June 1976. Hector Petersen. Age 13." A teenager in tears with a little girl at his side bears the body of a boy gunned down by the police. It is the most famous and dramatic scene from the Soweto uprising. The second photo, titled "1 June 2001. Nkosi Johnson. Age 12," shows a familiar face. Everyone in South Africa recognizes the sick boy who spoke at the opening of the Thirteenth International AIDS Conference in Durban to ask the South African president to make antiretroviral drugs available to all. Nkosi Johnson died a few months later. Yesterday's martyr with today's victim. Both images represent symbols of the past and present struggles. Apartheid not long ago and AIDS from now on. It was undeniably effective to bring the two together just after commemorating the twenty-fifth anniversary of the Soweto uprising, which itself marked the renewal of the fight against the old regime. But what truth was the poster affirming? That the life of a child is as valuable as any other life and that all political causes that attempt to save one child are of equal worth? Compassion, especially when it is directed toward children, has undeniable efficacy in swaying public opinion. Most campaigns for drug availability have been based on this "moral sentiment," as Adam Smith (1976) would have said.
However, there are other truths, as emotional as this one but less consensual. In South Africa AIDS is not just an epidemic that people fight. It is also an epidemic about which people fight each other. It is not only a matter of policy in the way we speak of health policies targeting prevention, treatment, and patient assistance. In the sense that it often sets actors and theories virulently at odds, and may well partake of the very definition of politics, it is also a political issue. As many observers have noted, only a few years after the advent of democracy in South Africa, AIDS has become the main political question, not so much because of its incredibly rapid spread or even its incalculable human and economic costs, as for the violent way it confronts the frailty of political power and rends people's lives and relations.
Michael Walzer (1983), searching for the foundation of a just society, proposed as a criterion "the shared understanding of social goods," in other words, agreement on what is good for all and each. History and memory are such social goods, as they represent the relationship with time through which identities and differences are built. In South Africa such shared understanding- what may be called, more simply, history and memory-can hardly be said to exist. This is clear from the work of the Truth and Reconciliation Commission (TRC), which had difficulty getting its hearings published in full, and the tensions surrounding the procedures for compensating victims. Playing on the national reconstruction slogan, "the rainbow nation," Deborah Posel (2002) calls the contradictory versions of events that emerged in the TRC hearings, which interfered with both the reconstitution of particular stories and the production of a collective history, a "rainbow of truths." Even the remarkable charisma and consensus-reaching skill of the commission's president, Archbishop Desmond Tutu, have not been enough. Frustrations have grown in proportion to hopes placed in the process and dashed by the results, deceived expectations of reparations and too easily obtained amnesties. But more important, perhaps, the hearings have demonstrated publicly the impossibility of restoring one common historical truth, and-however honest and sincere the work of the TRC has been-the very notion of shared memory has had to be abandoned.
The most acclaimed theatrical event of the postapartheid era, Nothing but the Truth, tells how a father, his daughter who works as an interpreter for the TRC, and his niece who has just arrived from London are confronted with a series of revelations about the past, especially about the old man's brother who has recently died. The whole family has lived the myth of the exiled hero, victim of the apartheid regime, but they discover that the father was more of a womanizer than a fighter and that he had to leave the country simply because of a love affair. Beyond the intimate wounds of these lies suddenly unveiled, however, the father suffers from not knowing the truth about his son who was killed by the police years before; no inquiry has been conducted, and the perpetrator remains free. This might be the deepest truth the TRC brought to light: on the one hand, where the present is constructed in pain and discord, there can be no unique truth about the past; on the other hand, if justice is not done, no reconciliation will be possible. Truth and justice, however relative and fragile they might be, are deeply linked.
This is attested by the social history of AIDS, whether we consider the intense controversy sparked by the South African president's declarations on the etiology of the disease and the effects of antiretroviral drugs or the deep inequalities in the distribution of the disease and access to drug treatment. On one side, opinions on Mbeki's declarations are divided along the wounds that remain in memory. Prejudices resurface; mistrust is reborn. On the other side, regarding the objective facts about who gets AIDS, the disparity reflects the violence of the past. Social differentiations are perpetuated; racial tensions sharpen. In opening this book with an analysis of the controversy surrounding the president's declarations on the virus and the autobiography of a woman dying of the disease, in working to hold together simultaneously the macro- and micro-political histories of AIDS-an approach resisted strongly in South Africa, where the first elicits condemnation and the second compassion-I hope to shed light on what I believe is in fact one reality-that through which bodies remember.
many rains later media reports have confined the leader to the oblivion of a secluded farm-however now & then an outburst splutters on the front page a croaking yell from an obstinate past the old vulture will not be forgotten already fresh broods of misanthropes are on the rise as everywhere the blood testifies. SEITHLAMO MOTSAPI "The Leader Reclines"
I first learned of what would become the largest political and scientific controversy in the history of AIDS in early April 2000. In an interview I was conducting on AIDS policies, an international official from a West African country whom I had known for some time opened his desk drawer and took out a fax, indicating its contents should not to be divulged publicly. He told me it was a copy of a confidential letter President Mbeki had sent to several "world leaders," among them U.S. President Bill Clinton, British Prime Minister Tony Blair, and UN Secretary-General Kofi Annan, to explain his recently stated policy on AIDS. It referred to the meeting of South African and international experts that Mbeki had convened to assess knowledge on the epidemic and the means to fight against it. The Presidential Panel, as it was called, included famous scientists involved in the discovery of the virus and clinical trials on the infection but also researchers known for their dissenting view of its causes (they consider the virus an "innocent passenger" of the disease) and treatments (they claimed antiretroviral drugs were responsible for the death of most patients). In his letter Mbeki expressed his indignation at the negative reactions his initiative had provoked in the world scientific community. His intention, he wrote, was simply to understand the specificities of the African epidemic and choose solutions adapted to that context rather than merely reproduce interpretations and remedies used in Western countries, where propagation characteristics were clearly different. Obviously, the missive I had in my hands was a potentially dangerous document that I decided to safeguard. I could not have imagined that it would cause the first global controversy over AIDS.
A Contemporary Apostasy
President Mbeki's "letter to world leaders" did not remain a secret for long. On April 19, just days after I received a copy, the Washington Post published long excerpts of the letter, along with a lengthy commentary on its contents and the "emotional controversy" it had sparked. The South African president, the article explained, was challenging the orthodox view of the etiology of the infection and the efficacy of its treatment. Although the letter neither explicitly proposed an alternative interpretation nor openly questioned the link between HIV and AIDS, it gave credit to heterodox scientists and thus put his country in a crisis of confidence. Surprisingly, in referring to the "scientists who dispute the prevailing views in the West on the causes and treatment of the disease," the editorial writer, Barton Gellman, seemed to suggest the relevance of Thabo Mbeki's analysis, as if the theories generally accepted by researchers referred to a specifically Western position-as if scientific truth was less dependent on universal criteria than on geopolitical considerations.
The controversy grew over the next few weeks. Indignant reactions multiplied, leading an editorial writer for the celebrated British medical journal the Lancet to question whether it made sense for specialists the world over to attend the Thirteenth International AIDS Conference in Durban-the first time since the epidemic had begun that the conference was to be held in an African city. A large number of researchers, physicians, and activists feared that their presence would lend legitimacy to the dissidents' theses. But the scientific gathering ultimately took place. As Mbeki began his opening remarks, half the audience stood up and walked out in a spectacular expression of collective disapproval. In the weeks leading up to the conference the president had clearly manifested his skill at provocation.
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Table of ContentsÍcaro|Ícaro|Ícaro|Introduction: Political Anesthesia and Anthropological Concern1. As If Nothing Ever HappenedThe ControversyA LifeProposition 1: The Structures of Time2. An Epidemic of DisputesBeginningsHeresyProposition 2: The Configuration of the Polemics3. Anatomy of the ControversiesOrdealsArenasProposition 3: The Figures of Denial4. The Imprint of the PastLong MemoryBared HistoryProposition 4: The History of the Vanquished5. The Embodiment of the WorldBehind the LandscapesWithin the NarrativesProposition 5: The Forms of Experience6. Living with DeathDyingBorn AgainProposition 6: Politics of LifeConclusion: This World We Live Ícaro|Ícaro|Ícaro|InNotesBrief Chronology of South African HistoryMaps BibliographyÍcaro|Ícaro|Ícaro|Index
What People are Saying About This
"This ethnography is comprehensive and nuanced in its approach. . . . Fassin's ethnography is ambitious and provocative. It is recommended to anyone interested in exploring how the past critically shapes the present characterization of AIDS in South Africa."Journal of Biosocial Science