I came upon the idea of this book sometime during the afternoon of April 9, 2005, while reading Edwin Cameron's book, Witness to AIDS.
In that book, Cameron tells a ghastly story one does not easily forget.
Knowing that up to a third of its population had HIV or AIDS, and that about one hundred thousand people were in urgent need of drugs, the government of Botswana announced in 2001 that it would offer free antiretroviral treatment to every citizen with AIDS. It was a dramatic declaration of intent, unprecedented in sub-Saharan Africa. By the time the drugs had hit the shelves and health personnel were ready to administer treatment, just about every soul in Botswana knew of it.
And yet, on the last day of 2003, more than two years after the launch of the program, only about fifteen thousand people had come forward for treatment. The rest over eighty-five thousand people had stayed at home. The majority would now be dead.
Why did they not go to get the drugs?
"Stigma," is Cameron's answer. "People are too scared too ashamed to come forward and claim what their government is now affording them:...the right to stay alive...In some horrifically constrained sense, they are 'choosing' to die, rather than face the stigma of AIDS and find treatment."
Does this foreshadow an entire region's response to AIDS? When the history of this great epidemic is written, will it be said that an untold number of people died, not because the plague was unstoppable, but because they were mortally ashamed? Will it be said that several successive generations of southern Africans were decimated by a sense of disgrace?
About 2.1 million people died of AIDS in sub-Saharan Africa in 2006. Another 25 million are living with HIV. In South Africa, where I was born and bred, nearly 6 million in a population of 46 million are HIV-positive: more than one in eight people. Some eight hundred South Africans die of AIDS on an average day. And the epidemic is spreading at a rate of more than a thousand new infections a day in South Africa. That death could keep accumulating on this scale despite the presence of lifesaving medicines is chilling beyond description.
A certain intellectual temperament greets such spectacles with excited fascination. The moral of Cameron's story, it may be tempting to conclude, is that human lives are not sunny and progressive projects, but the sites of blunt, blind tragedy. Not just the world, but even our own natures are indifferent to our programs of betterment.
I am not one of those fascinated souls. When I read a story like Cameron's, my gut response is that something is wrong, something that might be fixed. This is not to say I subscribe to the proposition that, at core, our natures are healing and life-giving. There is a surfeit of shame and envy and destruction within us, quite enough to go around. But it seems to me that what becomes of this darkness is not a question of fate but of politics. When people die en masse within walking distance of treatment, my inclination is to believe that there must be a mistake somewhere, a miscalibration between institutions and people. This book is a quest to discover whether I am right.
When I finished reading Cameron's book I began to look for the most successful antiretroviral treatment program in South Africa. I wanted to find a place where poor villagers lived within walking distance of well- administered drugs, and where nobody need die for lack of medical care. I wanted to go there and find people who were staying at home and dying, and I wanted to know why they were doing so.
The closest thing I found to what I was looking for was the rural district of Lusikisiki in Eastern Cape province. It is not quite true that everybody there lives within walking distance of antiretroviral (ARV) treatment, or that nobody need die for lack of medical care. It is a chronically poor place, where people have been dying for want of decent care since long before the HIV virus. But extraordinary work was being done there. The international nongovernmental organization Médecins Sans Frontières (MSF, and called in English, Doctors Without Borders), in partnership with the Eastern Cape Department of Health, was using the district's rickety and neglected primary health-care clinics to administer antiretroviral treatment. When MSF arrived in 2002, nearly one in three pregnant women was testing HIV-positive. At least one person a day was dying of AIDS at the hospital on the outskirts of town. Most of those infected with the virus were still asymptomatic; in the absence of a medical intervention, an avalanche of death was to come.
MSF was putting out very good news indeed. Staffed by a cohort of laypeople and ordinary government nurses, the clinics were up and running, the organization said. Thousands of villagers were cramming the waiting rooms to test for HIV. And the shelves were stocked with drugs. By the time I made contact with MSF in mid-2005, a thousand people were on ARVs.
The program was run by an MSF doctor called Hermann Reuter. He is to occupy quite a few of the pages that follow. Reuter's guiding proposition was quite simple: If you provide treatment that works, people will come and get it. If you provide poor treatment, make people stand in lines, or shunt them from one institution to another, they will look elsewhere for succor, or they will stay at home and die. His work was that of a medical missionary: he wanted to show that you could provide decent AIDS treatment anywhere, even in places that had long ago been routed, and that if you did so, people would come forward.
I went to Lusikisiki deeply skeptical of Reuter's evangelical simplicity. While I wanted to resist the stance of the morbidly fascinated, I suspected that things in Lusikisiki were a lot more complicated than he made out. And it did not take long to find people who lived close to a clinic staying at home and dying. The question was why.
If the brochures produced by the area's negligible tourist industry are to be believed, Lusikisiki owes its name to the sound of the wind moving through reeds. According to locals, the word does not mean anything, or if it once did, its meaning is lost to memory. In any case, they say, Lusikisiki refers to two things: the town center with its commercial street and its smattering of suburban-like homes, and the thirty-six or so villages scattered around it in a forty-mile radius.
It is not an easy place to describe. Were you to read its economic data off a spreadsheet without seeing it in the flesh you might think it was a depressed inner-city zone. The majority of adults are un- or underemployed, and most households get their income either by cheap, unskilled labor, or survivalist self-employment, or government grants.
And yet its physical setting is anything but urban. Lusikisiki's 150,000-odd people live in about three dozen villages spread liberally over a spirited, temperamental landscape. Streams and rivers run through villages flanked by wild forests; cows, horses, and goats graze off deep green grassland; the villages along the seaboard stand on high cliffs and command breathtaking views of the ocean. Wandering through this place, it takes dogged labor to remind oneself that its political economy is no longer rural, that almost everyone you meet is either unemployed, or in a job that earns less than a thousand rand a month (roughly equivalent to 140 U.S. dollars), or is the recipient of a grant.
You know it, however, when you leave the villages and make your way to Lusikisiki's town center. There you see what transpires when a single market street becomes the focal point for 150,000 residents of a rural district who must come to one central throughway to purchase everything in their lives, from the food in their stomachs to the tin roofs over their heads. There is no place to move not in a car, not on foot, not inside the massive warehouse stores. The rows of hawkers push the pedestrians off the pavements and into the streets, leaving a narrow tunnel for the cars. And there are too many cars. Five days a week, eight hours a day, the street is dense with people, metal, noise, and a cloud of carbon. By seven in the evening it is quiet and empty.
At first I thought that this anomaly between the rural landscape and the urban profile was simply a symptom of my outsider's incomprehension. Yet I soon discovered that the villagers were as confused as I was, that they themselves felt the place to be in a painful and extended interregnum, and that it was this state of affairs that shaped the meaning of the AIDS epidemic.
More than a century ago, Lusikisiki was the capital of Eastern Pondoland, the last independent black polity in these parts to surrender its independence to the British. Political defeat spawned economic defeat; its economy hobbled by its political impotence, the men of Eastern Pondoland began working nine or ten months a year in Johannesburg's gold mines some six hundred miles away, beginning a pattern of circular migration that would persist throughout the twentieth century.
The kingdom's subjugation took a new and cynical form in 1963, when it was incorporated into the northeastern reaches of the Transkei, one of apartheid's notorious old bantustans, the separate "homelands" in which black South Africans could claim citizenship and whose sovereignty was recognized only by South Africa and its most credulous allies. Until the early 1990s, the Transkei was run by a succession of small-time dictators, among them callous and expedient men, their regimes heavily underwritten by the apartheid government.
As a reservoir of cheap labor for Johannesburg's gold mines and a dumping ground on the margins of South Africa's economy, Transkei districts such as Lusikisiki are no strangers to chronic illness. For the last eighty years, at least three out of four residents have incubated the tuberculosis bacillus, a disease that plagued South Africa's gold mine workers and their rural families throughout the twentieth century. Yet during the final decade of apartheid, the annual maintenance and operating costs of the whites-only Johannesburg General Hospital exceeded the combined health budgets of all seven of South Africa's bantustans, home to a population of several million people, among whom the modern diseases of poverty were legion.
So, while AIDS is without doubt the largest catastrophe Lusikisiki has experienced in living memory, the district is painfully familiar with chronic disease, early death, and wretched health care.
And yet, paradoxically perhaps, the villages of Lusikisiki represent something else entirely. Through much of the twentieth century, they constituted home ground, a way of life to defend and cherish, the site of a rearguard battle against a corrosive economic order. The men may have spent much of each year away from home at the gold mines, but they did so to gather the resources that nourished a way of life back home. In the villages of Lusikisiki, they were proprietors of peasant homesteads and they were patriarchs. This sense of command and continuity made up the kernel of their identities. They lived alongside the graves of their forebears, they paid bridewealth to marry, and they sired children who bore their names. The villages and the productive fields were thus the site of their quest to leave a legacy in this world after their deaths, the site of their humanity.
It is a cruel irony that by the time apartheid was defeated and the Transkei incorporated into a democratic South Africa, the twin foundations of this world work in the gold mines and a peasant economy at home were both in a state of irreversible decline. And with it, so was a way of life based on the land. On the town's main street, pedestrians exchange idioms about plows and hoes and harvests, as if the land were still productive, its inhabitants still rural proprietors. The place, its people, and the words that issue from their tongues are steeped in a way of life that is no more.
An epidemic that kills young adults in droves spawns difficult politics. How does a society absorb the death of its young? Whom does it blame?
When the dying is transmitted by sex, the politics get more difficult still. And when the dead were voters in a brand-new democracy, sons and daughters of a people just liberated from a white dictatorship, the spectacle appears cynical in the extreme, as if guided by an evil hand.
A new democracy is an era of resurging life. Sex is the most life-giving of activities. That a new nation's citizens are dying from sex seems to be an attack both on ordinary people's and a nation's generative capacities, an insult too ghastly to stomach. AIDS has given rise to accusation. Nowhere is this more evident than in the politics of South Africa's president, Thabo Mbeki, who questioned with bitterness whether the dying was caused by a sexually transmitted virus after all, and who asked caustically whether antiretroviral drugs were for the benefit of Africans or pharmaceutical companies.
Rage like Mbeki's is all over Lusikisiki. Where there is AIDS, there is blame. It is said in the villages that the virus was hatched in laboratories, to be let loose on blacks until whites become an electoral majority. And the accusations are not only racial, not only overtly political. The ill are accused of having murdered loved ones by their promiscuity. Neighbors are blamed for using magic to infect the beautiful and the successful. The accusations expressed in national politics are also stitched into village life, and, indeed, into individual consciousness. On one level, this book is an exploration of the place of blame and resentment in one man's decision whether to test his blood for HIV.
I visited Lusikisiki periodically over a period of eighteen months. After meeting many people nurses and patients, traditional healers and treatment activists I decided to research much of the book that follows by sitting on the proverbial shoulder of a man I shall call Sizwe Magadla. He was almost thirty years old when I met him. His child was growing in his lover's womb, his family was negotiating bridewealth with hers, and he was preoccupied with imagining the course of the remainder of his life.
On the day I clapped eyes on him, Sizwe was healthy and strong and had never tested for HIV, which puts him in a category shared by most South African men his age. That is why I chose him. In this narrow sense, and no more, he was an Everyman, and it was his perspective on the antiretroviral program that I wanted to understand.
The MSF project run by Hermann Reuter has only a peripheral place in Part One of this book. That may seem odd, given my motivations for writing it. The reason is that I wanted to approach antiretroviral medicine from Sizwe's vantage point, and when I met him, it was no more than a distant presence for him, one that cast a troubling shadow over the very edges of his world. The meaning of AIDS in his life had a good deal more to do with being a son, a prospective husband, and a shopkeeper than living in a district that administered antiretroviral drugs. I needed to show how the treatment program entered his life and wrestled with his other preoccupations.
As we began touring Lusikisiki's clinics, Sizwe came alive to the sheer scale of the illness that he had been seeing around him for some years. The more he witnessed, the more the prospect of testing his own blood for HIV frightened him. That he saw people taking pills and getting well did little to alleviate his fear. What follows is a chronicle and an exploration of that fear.
I have given him and his village pseudonyms and tried to disguise them both. That is a crucial feature of this book. A story about shame is also about privacy, for who wants others to witness their shame? And yet precisely what privacy means in the midst of an epidemic of shame is far more complicated than I ever imagined.
Copyright © 2008 by Jonny Steinberg