By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
Additional articles in this series.
INSIZA DISTRICT, ZIMBABWEWilson was the hardest. He had been such a charmer, a flirt even, but then AIDS dulled his sparkle and confined him to his bed. That's when Sibongile Ndlovu increased her visits to every day, bringing him food and caring for his bedsores, which had bloomed into an affliction worthy of Job. 'The whole skin on his side was coming off,' she says, and it filled his hut with the smell of sickness. She convinced the clinic to give her medicine, and she rubbed the ointment on his raw bedsores every day for the two months until he died.
Four years have passed, but despite that ordeal Ndlovu is still caring for patients. How many has she assisted? "Forty-two," she says, checking a tattered ledger with neat, handscripted notes. How many have died? "Sixteen."
Ndlovu is not a nurse or health-care professional of any kind. She is a peasant farmer who volunteers with the Insiza Godlwayo AIDS Council (IGAC). Her family income is about 300 Zimbabwe dollars a month, not even 10 U.S. dollars. Three days a weekmore if one of her patients is severely illshe stops by the homes of the sick, washing their bedclothes, fetching water, tilling the little plots of land on which these villagers all survive, even parting with some of her meager income to purchase things her patients need. Wilson had a craving for oranges, which are luxury items here. But she bought them.
Africa's response to AIDS is often depicted to be as dysfunctional as its economy, just another example of what some AIDS workers call "Afro-pessimism"only bad news coming out of Africa. It is true that just a handful of African governments have mobilized a response remotely commensurate with the magnitude of the epidemic, which has already slashed life expectancy by as much as 20 years in some countries. AIDS stigma has also made many ordinary people shy away from dealing with the epidemic. "I have found the most unacceptable denial and apathy in Africa," says Elhadj Sy, who heads the southern and eastern Africa team for UNAIDS. "But on the other hand, the most incredible responses to HIV have been developed here. We live in this contradiction of extremes."
Nowhere are these extremes more pronounced than in Zimbabwe, the former Rhodesia, which whites ruled until 1980. When it finally gained independence, Zimbabwe was the South Africa of its dayrelatively prosperous, with no foreign debt, and a currency stronger than the U.S. dollar. Now, the economy is in free-fall, and a quarter of adults in the prime of life, aged 15 to 49, are infected with HIV. The virus is killing more than 65,000 people a year.
Yet the director of Zimbabwe's National AIDS Coordination Programme, Everisto Marowa, says that government spending on AIDS prevention has, in real terms, "certainly not increased and probably declined" over the last five years. Last month, the government announced a special AIDS tax, but even AIDS workers criticized the idea because the government provided no plans on how it would spend the money. Corruption and mismanagement are rife in Zimbabwe, and previous special levies have disappeared with no accounting.
Meanwhile, the government admits it is spending more than 70 times the budget of the AIDS Programme on its unpopular military intervention in the Democratic Republic of the Congo, though independent observers estimate the war costs many times more than that. Few citizens understand why a third of the army has been deployed in the civil war of a country that does not even border their own, especially when inflation and unemployment in Zimbabwe both exceed 50 percent. But many suspect a few may be profiteering: The head of Zimbabwe's army is a director of one company that has mining rights to the mineral-rich Congo and of another that has trucking rights.
Yet below the radar of government, in individual communities there are astonishingly vigorous responses to AIDS. "In every province we have member organizations," says Thembeni Mahlangu, director of the Zimbabwe AIDS Network. "They were often started by a church or NGO [nongovernmental organization] and sometimes just by individuals." For example, Auxilia Chimusoro founded Zimbabwe's first AIDS support group, and then tirelessly traveled the country launching more. By the time she died in 1998, Chimusoro had started more than 50 support groups, most in poor rural communities. In the capital, Harare, the Musasa Project works with battered women, helping them break free of partners who often force them to have sex, almost always without a condom.
IGAC, the group that helped Wilson, specializes in home-based care and orphan support, and it has recently launched a youth prevention campaign. The leadership of most AIDS programs "is composed of professionals," says Lucia Malemane, a nurse with Zimbabwe's Matabeleland AIDS Council, who taught Insiza about AIDS. "But with IGAC, it's just ordinary peasant farmers."
Heroic as these efforts may be, they are tinged with poignancyand not just because the government, which could knit these isolated efforts into a powerful national response, has shirked its duty. Most community programs lack any but the most basic medicines. Certainly they cannot afford the expensive regimens that have reduced the AIDS death rate in wealthy countries. Without effective drugs, home-based care can seem like little more than home-based death. With the disease mowing down so many people, and with poverty making volunteering so burdensome, it remains to be seen whether such homespun efforts can endure for the decades that may well pass before an AIDS vaccine is developed.
But for the moment, thousands of ordinary Africans are defying all odds to care for their sick, raise their orphans, and try to slow the virus's spread. If governments finally mobilize against this disease, they will find some of the best and most energetic AIDS strategies right under their noses.
And they might find something else. Traditionally, Africans relied on extended families and tight communities to weather adversity, but even before AIDS, colonialism, urbanization, and social atomization had weakened the sinews of African society. The epidemic threatens to snap thembut it could also have the opposite effect. "AIDS is horrible, but in times of great stress societies can either fall apart or come together," says Alan Whiteside, who studies the demographic impact of AIDS at South Africa's University of Natal. Noting how the American gay community built powerful institutions and a stronger culture, he says that "IGAC, with a little help, could be an example of building civil society in Africa."
There are few places where the difficulties of responding to AIDS are more daunting than here in Insiza, a flat, dry district of southern Zimbabwe punctuated by dramatic rock formations and dotted with imizi, rural homesteads composed of neatly ordered round huts. Villagers here are so poor that most don't bury their dead in coffins, but merely wrap them in blankets. At one funeral, near the start of Zimbabwe's winter, the grieving family was so destitute that, after lowering the body into the grave, they started removing the blanket from the corpse so their children wouldn't go cold. Stricken with pity and horror, IGAC's coordinator Japhet Gwebu gave the family a blanket.
Only about half of Insiza's population can read and write, and what schools there are often lack even furniture, forcing students to work on the floor. The district hospital is supposed to have five doctors, but on a recent visit, it had only one, and the operating theater was closed because the hospital had run out of anesthetics. Nurses are also in short supplybut not patients, who have poured in over and above capacity.
Frequent droughts cause starvation. The 1992 drought killed most of the cattle, which means that even though the rains were good this year many prime fields lay untilled because there are no beasts of burden to pull the plows. Nobody, of course, has tractors or automobiles. How many residents have electricity or running water? Fidres Manombe, chief executive officer of the district council, laughs at the question. "Oh, it's negligible," he says.
Back in the late 1980s, when a new disease began causing people to waste into skin-shrouded skeletons, most people in Insiza believed the affliction was caused by witchcraft. Only in 1994 did they learn the medical facts, and immediately a group of elders decided they needed to do something to care for the droves of sick people and the swelling number of orphans. But how to organize the villagers?
Homesteads are scattered far apart, yet throughout the district's 7500 square kilometersan area larger than Delawarethere is only one paved road. Nobody has telephones. Isaiah Ndlovu, one of IGAC's founders and most active leaders, has never even heard of e-mail, but he sometimes sends messages by relay, villagers passing on his communiqué so that by the end of the day it has traveled across the vast farmland to its intended recipientif someone hasn't misunderstood the message or forgotten it completely. So to mobilize his community, Ndlovu must visit homesteads one by one, and that's how he keeps the program going, checking in on the volunteers and the dying people they're caring for.
To any destination closer than 10 miles, Ndlovu just walks. When he has to catch the one and only bus that serves his village, the 56-year-old rises at 3:45 a.m. and trudges 45 minutes in the dark to the bus stop, an unmarked patch of grass by the unpaved main road. Delays of eight hours are not uncommon. "But," Ndlovu says, standing in a winter drizzle one morning when the bus was already long past due, "it's better for the bus to be late than you to be late for the bus."
Today, five years after its founding, IGAC has 500 active volunteers and at least another 500 who help out as needed. To put this in perspective, New York's largest AIDS organization, Gay Men's Health Crisis (GMHC), had 500 home-care volunteers in 1994, just before new drugs lowered the death rate. With a budget exceeding $24 million, GMHC rewards its volunteers with parties and other perks. IGAC has an annual budget of less than $17,000, and volunteers, though they are dirt poor, are asked to pay dues. The volunteers also give directly to their patients, bringing tomatoes or soap, candles or ground maize, which Zimbabweans eat at virtually every meal. "It's not every time that we can bring something," explains Kelina Ncube, one of the volunteers. "We just give them some of whatever we have to eat that day."
All this giving takes its toll. "When we started it was easy going," says Ndlovu. "But as we go along, some are starting to say, 'We have contributed too much."' Indeed, at a meeting, one woman asks if she and the other volunteers can be compensated. Some of this may be bellyaching"we have different characters," says Ndlovu, drylybut most of the complaints stem from brute poverty. "We have to nurse sick people and handle food for them, so we need to wash with soap," he explains. "But soap is very, very expensive." In Zimbabwe, a bar costs the equivalent of 20 cents.
"In the U.S. you have all these volunteers, but they're never worrying about putting food on the table," says Noerine Kaleeba, who launched Africa's first support group for HIV-positive people, The AIDS Support Organisation of Uganda. To keep volunteers going, Kaleeba says, some African communities have planted a special garden from which only volunteers can harvest, or created a fund that pays the school fees of their children. (Zimbabwe, like most African nations, does not provide free education.)
It is often said that Africans are passive in the face of death and suffering, that life is cheap here. The truth is that life is hard. People are so poor that even when they give a large proportion of their income, as most IGAC volunteers do, the total amounts to only a small sumso small that even bare-bones efforts are hard to launch and maintain. Groups like IGAC are "isolated and scattered blossoms," as Kaleeba puts it, adding, "I wish this blossom could be turned into a flower garden."
It was Sikhangele Ndiweni's mother who launched IGAC's first attempt to raise money: a communal garden for cultivating and selling vegetables. But the plot was small, so the earnings were, too. Ndiweni's mother never saw IGAC's subsequent ventures; AIDS killed her in March of 1997, and her husband died three months later. As their oldest child, Ndiweni dropped out of school to nurse them"I had to wash my mother and greet the people who visited her," she saysand now, at 20 years old, she is raising her sister and four brothers. She depends on IGAC for food and school fees, but she is not merely taking. Like her mother, she is helping IGAC raise money.
In addition to her household chores, Ndiweni tends a herd of goats, part of a donation IGAC received from HelpAge, an organization that assists the elderly. The goats, split into small herds and looked after mainly by orphans, are one of IGAC's two main income-generating projects. The other is a grinding mill for maize. The profits get divided up and given to committees throughout the district, who then perform triage, deciding which families in their villages most need blankets, school fees, or emergency rations of food.
Margaret Nkomo, a member of one of IGAC's local committees, says that in her corner of Insiza there are 46 children who have lost at least one parent. About a third of those orphans have no means of support besides IGAC, yet the goats and grinding mill paid for only some of the children's primary school fees. Nkomo and other volunteers covered the rest by dipping into their own shallow pockets. But secondary school costs more, so some older orphans couldn't afford to go.
Ndiweni would love to finish secondary schoolshe liked it and was a good student. But there is no money, and she has been catapulted into adulthood. Now she has begun making home-care visits, helping others even as she is herself helped. "I can't bring any food," she says, "but I can cook and wash and help in those ways."
Eliot Magunje, an activist in Harare, is not impressed. "It's not home-based care, it's home-based neglect," he charges. Magunje is HIV-positive, and much of his anger springs from the harsh fact that drugs which could prolong his life are too expensive here. But he exposes the central weakness of virtually every home-based care program in Africa: They offer little or no medical treatment. The ointment for Wilson's bedsores was an exception. Usually, says Isaiah Ndlovu, "Our medicine is to pray."
The emotional toll keeps accumulating. Volunteer Moddie Nkomo cared for her sister's son until he died, cleaning him after his frequent diarrhea. Then there was the "very difficult day" last November when Nkomo "was looking in on three people, and they had all died. Even today we buried another," a 35-year-old man. His wife had died last year, and Nkomo had cared for her, too.
Many AIDS workers believe that programs like IGAC cannot last, especially given the lack of government support. AIDS, after all, has slammed into a continent already battered by a terrible history. Driven off the most fertile land, which remains in the hands of mostly white farmers, rural Africans constantly face food shortages. Many men are forced to migrate between the cities where the jobs are, and the homesteads where their extended families live. This oscillation is psychological as well as geographical, because many Africans exist in a limbo between traditional cultures that cannot be resurrected and a Western materialism that can seem empty. A catastrophe on the scale of AIDS could disintegrate these fragile communities.
Yet in Insiza, the opposite is happening. AIDS is definitely straining the communitybut that is precisely why many villagers are volunteering. Especially in rural areas, many AIDS volunteers "are not committed to fighting the disease so much as nurturing their community," explains Sy of UNAIDS. "Success or failure shouldn't necessarily be seen in the number of people dying but helping the community stay together."
That's why foreign aid is so fraught. While poverty can be incapacitating, donors often impose their own priorities or undermine the spirit of self-reliance. IGAC is successful because the villagers have mobilized themselves.
Tall, upright Ezekiel Sibanda is the sobuku, or headman, of one of Insiza's villages, and he says IGAC has set a precedent. Women have banded together to weave grass mats and sell them, sharing the profit and giving a little to the needy. Another group is doing the same thing raising chickens, still another has started a garden, and a youth group is making bricks. Such communal endeavors didn't exist before IGAC, Sibanda says. "People were not as giving. IGAC has brought us together."
And it has done so in a manner that harks back to "what our traditional communities used to be," says Marowa of the national AIDS program. Precolonial African civilizations were often organized in smaller, more communitarian units than European nation-states. "Indeed, the most distinctively African contribution to human history," writes John Reader in his highly acclaimed book, Africa: A Biography of the Continent, "has been precisely the civilized art of living fairly peaceably together not in states." As Kaleeba explains, "While the state exists, the primary responsibility lies within my family, neighbors, and community. No one has written that law, but it is passed on and understood."
Traditional African societies tended to be flexible networks where individual gain at the expense of the community was taboovirtually the opposite of capitalism. This was no utopia, but rather an adaptation to Africa's harsh realities. The continent has always been underpopulated, so communities needed every able body, and needed them to give to the larger society. Africa's communal civilizations, Reader maintains, evolved to ensure "survival in a hostile environment of impoverished soils, fickle climate, hordes of pests, and a more numerous variety of disease-bearing parasites than anywhere else on earth."
IGAC's response to AIDS, then, is a reclamation of the age-old ways that enabled African communities to withstand previous scourges. The selflessness of the volunteers springs from deeply ingrained roles that were weakened but not broken by colonialism. The money-making projects are adaptations of those traditions to the present crisis, as is the frank talk about sex in IGAC's new youth program, which hands out condoms and warns girls away from "sugar daddies."
Still, poverty shadows these people too closely to consider IGAC's future secure. Many of the organization's goats, for example, died in an epidemic of their own; IGAC, of course, couldn't afford medicine to treat them. Another drought could finish off the herd, wither the communal gardens, and sap the community's spirit. And, of course, there is the relentless tide of AIDS.
Isaiah Ndlovu is walking with his volunteers on their way to visit another stricken family. Do the endless deaths make him frustrated or angry? "No," he says, "not at all. We have accepted it and when you accept it, it becomes ordinary life. Okay, death is here. But let's care for the sick and the orphans. To me it's just that simple."
Huddled in blankets in her hut, Tabeth Nkomo knows she and her husband are both dying, knows her aged mother is already too feeble to till the fields, and knows that her four children will soon be orphans. "I'm afraid for my last-born," she says. "He's too small to fetch water and firewood." So the biggest comfort that IGAC gives her is not bringing food or washing her frail body but the way they look after her children, cooking for them and disciplining them when they go astray. "They help when I'm alive," she says, "so I trust they will still help them when I go."
Research intern: Jason Schwartzberg
Next: The Virus, Past and Future