But HIV/AIDS is not really an ordinary sickness. It is not a cold or the flu, which, though contagious, are rarely deadly. It is not cancer or diabetes or heart disease, which are long-term and debilitating, sometimes deadly but not contagious. This is not to downplay the significance of the epidemic but rather to suggest, as Philip Alcabes does in his essay “The Ordinariness of AIDS,” that HIV/AIDS is extraordinary because it attracts so much attention from the global population, perhaps more than any other disease since the medieval plague. It causes intense fear, initially bordering on hysteria, which influences how we see both the disease and people who have it.
As long as there has been life, there have been viruses—or so I learned in medical school. Indeed, a virus might be a primitive form of existence. Viruses are inordinately simple creatures composed of genetic material, either DNA or RNA, surrounded by a protein shell. Their sole purpose is to replicate, to make more copies of themselves by inserting their genetic material into the genetic material of a host, such as a human cell, and making that cell generate more copies of the virus. We get sick because the virus often destroys our cells in the process of replicating itself.
In general, human immunodeficiency virus (HIV) behaves no differently from other viruses. It cannot survive on its own and must have a host organism to replicate itself and continue its life cycle. HIV is unique, however, because of the particular cell in the human body it chooses as its host. The virus’s primary target is one of the most crucial cells for human survival, the helper T cell. These cells coordinate our immune system’s response to most of the illnesses we might encounter during our lives. HIV makes millions of copies of itself inside the helper T cell and then destroys the cell to release all of its copies into the bloodstream. It is so devastating a pathogen because it attacks the body’s ability to fight infection—including HIV itself.
AIDS (acquired immune deficiency syndrome) occurs when the HIV virus has destroyed so many helper T cells that our bodies can’t begin to mount an immune response to even a simple illness. In other words, our bodies’ immune system cells cannot talk to one another. They act in isolation, and we are left extremely vulnerable to infections our bodies wouldn’t ordinarily sneeze at.
AIDS is not one illness but a constellation of sicknesses that can occur when our immune systems stop working. People with AIDS can get various forms of cancer, pneumonias, and fungal infections, along with bacterial and viral illnesses that our bodies might otherwise prevent. Because it takes a long time—on average about five years—for someone to lose enough helper T cells to progress to AIDS, a person with HIV may not look ill (in fact you can argue they are not ill) until the very last stages of HIV infection. It is just not possible to determine by looking who may or may not have HIV. This is perhaps one of the most important survival mechanisms for the virus. Because people who carry HIV do not necessarily appear sick, they are more likely to unknowingly pass the virus along to another person through the exchange of bodily fluids like blood, semen, or vaginal fluids. Thus, unlike other epidemics that announce themselves rather loudly, the HIV/AIDS epidemic is relatively silent.
HIV/AIDS is made all the more extraordinary because of the intersection of its biological and social effects. “In truth,” Alcabes writes, “there is no clearly demarcated biological disease divorced from the social narrative of the epidemic. ... No matter how sophisticated our molecular virology is (and it is, today) the virus is only part of the story of the epidemic.” Dr. Chukwumuanya Igboekwu, known as Doc to his friends, would agree. His small organization, Physicians for Social Justice, operates in northern Nigeria to raise awareness about HIV/AIDS and provide services for people living with the disease. We first met in New York City on an unseasonably warm day for early March. I remember using my sweater sleeve to wipe away perspiration on my forehead after the brisk walk through a still barren Morningside Park and up the steps along its cliffs to Columbia University. Out of breath, I met Doc standing outside Nussbaum & Wu, a popular bagel shop and café, shivering in a large black winter down coat.
“I need to go home,” he said. “Kai, this country is cold.”
We laughed. His laugh was goofy for such a serious face, so much older than the twenty-seven years he had lived. He looks young, but his face appears thoroughly prepared for the most intense stress—a bus accident with forty casualties, a woman with a complicated pregnancy—and this gives him a sense of gravitas. After three years of friendship, I now understand. Since the age of twenty-five, Doc has been in a rural part of northern Nigeria, the lone doctor serving hundreds of thousands of people, whose language he does not speak and whose customs and religion he does not share. In his short career, he has seen nearly everything and learned to be prepared for anything.
According to Doc, the spread of a disease is not just a biological event; it is also social. Our reactions to HIV/AIDS and our effectiveness at stopping its spread depend on preexisting social and political conditions that both inform and are informed by its presence in our societies.
“I remember the case of one police officer, a sergeant, my friend,” Doc said above the buzz of conversation and spoons tinkling against coffee cups and pastry plates. “I didn’t see him for some time, so I started asking, ‘Where is this guy?’ They said he was not feeling fine. I went to his house, and when I saw him, I was shocked. He has lost weight. He couldn’t stand up again. I asked him, ‘What is wrong with you?’ The only thing he said is ‘Doctor, they said it’s AIDS.’” The policeman was in the end stages of AIDS, Doc told me. It didn’t have to get this bad, but the community’s ideas about AIDS had affected the progression of the police officer’s disease.
Instead of seeking help, the sergeant had gone into seclusion because of his diagnosis, attempting to avoid contact with family, friends, and the community at large because of the negative opinions and community sanction that would result if people knew his diagnosis. Doc explained that he tried to mobilize for his friend, that he rushed to Minna, the capital of Niger State, about three hours south of where he lives and works, to get additional medicines like immune system boosters from the regional office of an international NGO, but it was too late. The sergeant’s illness had progressed too far.
“By the time I came back, the guy had died. Just like that.” He clasped his hands together on the table and let them rest around the cup of tea steaming in front of him. I sipped from my own.
“You know, I talked with his children.” Doc’s voice broke a little as he spoke. “Because later they came to collect his medical certificate. When I wrote the medical certificate for them, they didn’t let me say it was HIV. I just told them he died of immunosuppressive disease. I didn’t feel so bad because I was not lying outrightly HIV is an immunosuppressive disease, but somebody that is not a medical guy wouldn’t understand what that is. I do that a lot. There are some cases where they will not allow you to write HIV/AIDS. In fact, I don’t think I’ve ever written HIV/AIDS. I never write HIV/AIDS. I always put immunosuppressive disease. You can write any other thing. You can write heart attack, hypertension, but they will not be happy if you write HIV as the cause of death, AIDS as the cause of death.” The diagnosis of HIV/AIDS carries such weight that people are just as eager to avoid it in death as they are in life. No one wants to be a permanent outcast.
The sergeant’s family left town soon after his death. When Doc urged the man’s wife to get tested for HIV, she refused.
“Why did she not want to get tested?” I asked, almost involuntarily.
The answer came later when I joined Doc in one of the rural northern Nigerian villages where he worked.
Sahon-Rami is a remote village in predominantly Muslim Niger State, five hours north of Nigeria’s capital, Abuja—even at the speed Doc drives. He careened down the two-lane highways, passing large trucks when the road cleared, swerving to avoid potholes, and laughing as I gripped the passenger-door armrest in terror. He knows the roads well—where the police checkpoints usually pop up and when to hang his stethoscope from the rearview mirror so that the officers wouldn’t stop us and ask for bribes. As we sped further north, the signs of human life grew more intermittent. Vast open fields of scraggly bush, occasionally broken by a large tree or accumulation of boulders, stretched from the road on either side. Sahon-Rami is a small community in the middle of one of these open expanses. With a spread-out group of other hamlets, it forms the Mashegu local government area, population two hundred thousand, most of whom are Doc’s patients. Some of the areas are so remote that they are accessible only by motorbike. Even in Sahon-Rami, Doc joked, you need to climb a tree to get a signal on your mobile phone.
Once we got settled in his small house, down the road from the clinic where he worked, Doc took me to the village square, a small clearing to the side of Sahon-Rami’s rough, red-earth main road. It was bordered on the other three sides by mud-brick houses capped with thatch or rusting corrugated tin roofing. A complement of tree stumps used as seats and smoothed by years of friction from the bottoms of villagers filled the otherwise open dusty space. Not far from us, little boys roughhoused in the meager shade of a bone-dry tree, climbing its branches in a diversion from the path between their lessons at school and their work in the fields. Little girls in various colors of headscarves walked one another home with much more order and purpose than their male counterparts. They stopped in groups before each low-standing mud-brick thatch-roofed house as their numbers slowly were whittled away. Here everyone knew everyone—indeed, many families were related by blood or marriage. Everybody also seemed to know everybody else’s business—who did or didn’t go to mosque, who did or didn’t pitch in for the community grinding mill (which spewed thick black exhaust up and over a thatch fence), the births, the deaths, and all the usual stuff of rural community life.
It was here that I met Idris, a young self-proclaimed youth leader and community politician. Tall and lanky, he sported a red fez cap with a tassel he repeatedly waved away from his face. His long beige caftan had a ring of red dust around its lower hem. The same red dust covered his toes and leather sandals.
“Here? Now? If we are suspecting either man or woman, if you are suspecting that they have HIV, no one will come closer to you,” he said when I asked him what people in the area thought about HIV/AIDS. “If you are a man, no woman will come closer to you. If you are a woman, no man will come closer to you. Everybody is afraid. You know community people now. Villagers—everybody does not want to lose his life.”
I believed him. He seemed to know every inch of this community. Idris had to know this place. It was an election year, and he had spent countless hours on his motorbike or on foot traversing a vastness in which the politics, in addition to being about money, was about your family, your friends, and what they all thought of you. His community was small-village Nigeria, where the days roll over slowly and nothing seems to change.
“I remember some years ago,” he told me. “One lady, they were suspecting her because she’s very lean and she’s always on bed—fever, all of this. We are suspecting maybe it’s HIV. They banish her. They took her away. I don’t know where they took her to. They only made sure she should leave the community.”
He was evasive in answering my follow-up questions. What did she look like? Silence. Who pushed her out? “The youths.”
Were you there? Silence—leaving me to imagine what a scene that might have been. What about her family, her protection? As I have been told, in some of these situations, the family is quick to abandon the ailing person. They give her a separate space in the compound, bring food and clear used dishes, but that is all. Conversation, a loving touch, reassurance—like health, these things all fade away in the face of HIV/AIDS. She would have been profoundly alone.
“Where did she go?” I asked him.
Idris was silent for a moment. He then said softly, “They made sure she should leave.”
An older man overheard us speaking. He looked up from the prayer beads he was trying to string back together. He picked each one off the ground and threaded it down a long black piece of rope. Beads fell from the other end when he diverted his attention.
“Nobody can tell you that he has it,” he chimed in. “If people knows that he has the disease, people will try to isolate themselves from him or her so that the disease will not be transmit.”
This isolation that Doc, Idris, and the old man describe is the result of the unique stigma associated with HIV/AIDS. In his seminal work Stigma, the sociologist Erving Goffman defines stigma as a trait that can turn people away, an “undesired differentness from what we had anticipated.” He argues that stigma comes in three distinct but related forms: abominations of the body, perceived blemishes of individual character, and the stigma of race, nation, or religion. Abominations of the body are physical deformities that set one apart. Blemishes of individual character are alleged moral, mental, or emotional flaws for which a person receives societal condemnation. Finally Goffman considers the stigma of race, nation, culture, or religion to be the result of inheritable traits that can be passed along and shared as a result of affiliation.
Stigma has enjoyed a lasting relationship with disease. In general, disease usually associates the carrier with one or perhaps two of Goffman’s three manifestations of stigma. For example, the lepers of biblical and medieval times were cast aside because of their unsightly bacteria-eaten flesh. In the present day, heart disease can sometimes be a stigmatizing illness because it is associated with gluttony and sloth. The stigma of HIV/AIDS, however, is more profound and complicated because it combines all three categories of stigma and so brands the victim and associated community not once but three times over.
If abominations of the body are a form of stigma, then HIV/AIDS in its end stages causes plenty. Most of my exposure to the stigmata of HIV/AIDS occurred while I was on the AIDS care team at Columbia University during my third and fourth years of medical school, and I would often find it hard to observe the physical deterioration of some of the patients we cared for. I remember one woman who suffered from persistent and painful Candida fungal infections of her mouth and throat. Each morning, despite treatment with antifungal mouthwashes and scrubbing with a toothbrush, she would have a thick white film at the back of her throat, on her tongue, cheeks, and lips. Another patient I helped to care for came to the hospital with the multiple itching, oozing sores of prurigo nodularis, which can sometimes occur in patients with HIV. These lesions made it impossible for him to lie comfortably in bed, so he squirmed and scratched constantly, picking at old scabs and opening new weeping wounds that glistened in the harsh overhead light. Other patients I saw suffered from persistent diarrhea or the AIDS-related cancer Kaposi’s sarcoma, which can cause disfiguring red tumors to form on a patient’s skin. They were clearly marked by their illnesses in ways that were hard to ignore.
I found it difficult not to be overwhelmed by the physical presentation of some of our patients. The desire to recoil and protect oneself is not admirable, but it can be so strong that at first it can be hard to see beyond the manifestations of a disease, to see that before you lies a person with a disease—not a disease with a person. I would often marvel to myself while I stood outside a patient’s bedroom as I put on gloves and a protective gown, and after as I lathered my hands with sanitizer—standard hospital procedure to protect both patients and care providers—how thin this line is between professional responsibility and fear. If I and others with a background in health and knowledge of how HIV/AIDS works and is transmitted can be shocked by its physical signs, what to do then if you are a villager in a rural area without much information beyond the idea that HIV/AIDS is bad? What do you do if you witness a friend, as one man recalled to me, with “her whole body fill up with sores. Her skin color just change from yellow to black like that.”
What makes HIV/AIDS even more disconcerting is the fact that a diagnosis is still often considered a death sentence. Idris explained to me that in Hausa-speaking northern Nigeria, the word for HIV/AIDS is kanjamau. This translates roughly as “skeleton.” In addition to suggesting the emaciated physical appearance of a person with HIV/AIDS, it also brings to mind the ultimate abomination of the human physical form, the stuff of horror films and nightmares, the living dead. If being negative is ordinary, then this HIV-positive person languishing in this liminal state, not quite alive, not yet dead, is clearly abnormal and as such suffers from discrimination that can lead to isolation and neglect.
However, the nature of this disease is that it often does not show for years. This complicates its associated stigma. “You can’t see it because it doesn’t written for anybody’s face,” the old man in Idris’s village square said. He was expressing a common sentiment: you can’t see it, so be afraid. In other words, now more than ever we must use vigilance and segregate ourselves from these dangerous HIV-infected Others, even if, paradoxically, we cannot immediately recognize their difference.
The disease is also seen as a commentary on a person’s moral standing. As one doctor I spoke with briefly about HIV put it, “Whenever people see you, they say, ‘Oh! Here is a sinner—somebody must have gone and done something really bad.’ People don’t want to be associated with that.” Thus HIV causes a remarkable metamorphosis, making the extrinsic and physical an intrinsic property of character. An HIV-positive person becomes at best a person with flawed judgment and at worst someone evil.
“Dearly beloved, it has pleased God to afflict you with this disease, and the Lord is gracious for bringing punishment upon you for the evil that you have done in this world”—Michel Foucault quotes from a French ritual when discussing the treatment of lepers in medieval times. He might as well have described the present attitude toward those with HIV/AIDS, in Nigeria and perhaps elsewhere in the world. Despite the increasing availability of scientific information about the nature of HIV transmission, there are still many Nigerians who believe the disease is punishment for individual sins and aggregate societal ills. The anthropologist Daniel Jordan Smith has studied Nigerian attitudes toward HIV/AIDS and found that “the dominant religious discourse about AIDS is that it is a scourge visited by God on a society that has turned its back on religion and morality.” He recalls conversations with HIV-positive Nigerians who attributed their disease to the “sinful immoral lives they had led.”
The impact of such thinking can be devastating. An HIV-positive woman I met briefly on a trip to Lagos explained to me the personal impact of this kind of moralizing on HIV infection.
“Even in church, my church, then, they saw it as a big taboo,” she said. “The way the man would be preaching and be saying things: ‘We’re telling people don’t be a prostitute when you’re young. You should behave well. You should have good upbringing.’ I felt he was passing the wrong information because I, as far as I am concerned, I had a good upbringing. I wouldn’t justify that I was a saint, but I know that to a great extent I had a very good upbringing. I felt that man was passing the wrong information. That information was scary. He was putting the immediate society in a tight corner because among the people there, you wouldn’t tell me that I was the only one who was positive in that church. You can imagine the wrong information that he might be sending to that man or that woman who is HIV positive—that you are a prostitute! You are a bad person! He was being too judgmental, so you go home judging yourself to death: ‘Oh! I’m a bad person. I don’t even deserve to live in this world anymore. Oh! Nothing good can come out of me.’ Those were the messages that were always surrounding the pastor’s message, the message of death, judgment, guilt, failure.” She stressed the word prostitute each time, almost spat it out at me with vehemence as if trying to clear her mouth of something bad-tasting.
The relationship between HIV and sexuality is complex and deserves special consideration. A major aspect of the moral component of HIV-related stigma derives from our anxieties about sex. Again, the work of Daniel Jordan Smith is instructive. His interviews with young Nigerians on the subject of sexual morality and HIV/AIDS yielded comments like “AIDS is God’s way of checking the immoral sexual behavior that is rampant in Nigeria now.” The intense focus on sexual impropriety as a cause for both the existence and the spread of HIV/AIDS leads to the conclusion that the moral failings of an individual can endanger society as a whole, making it all the more important to brand and exclude fallen individuals—to prevent additional lapses and mitigate the impact of those that have already occurred. Unfortunately, this practice can backfire, because it drives frank discussion about the nature of HIV to the margins and discourages honesty about diagnoses for fear of judgment and stigmatization. It creates a silence that facilitates the spread of the disease.
Finally and perhaps most dramatically, the physical and moral forms of stigma associated with HIV/ AIDS attach not only to individuals but also to racial groups, countries, in fact a whole continent—Africa. The locus of the worst manifestations of the HIV/ AIDS epidemic in sub-Saharan Africa reinforces preexisting stigmatizing notions of Africans as inferior and Africa as a backward place. Ideas about Africans and Africa as unacceptably different are longstanding and complicated, and they have already been explored by many writers and thinkers. Africans have traditionally been considered emotionally and intellectually inferior, our savage bodies finding purpose only when subordinated to the white man’s will. During the colonial period, myths of savagery, ungodly ritual, human sacrifice and profligate sexuality became more common as an increasingly violent subjugation of the colonized necessitated ever more imaginative justifications. Some have argued that the branding of Africans as inferior emerged as exploitation of Africa’s natural resources, including African bodies as cheap labor, increased. In other words, in order to legitimize the abuse of another human, colonial masters had to diminish the humanity of their subjects and emphasize the otherness of the place from which they came.
Anthropological and scientific writings of the colonial period are shot through with these sentiments. Among the more precise—and prescient—is Joseph Conrad’s fictional work about the Congo, Heart of Darkness. Conrad connected African inferiority and disease in a way that anticipated present-day racial and cultural stigmatization of those with HIV/AIDS in Africa:
Black shapes crouched, lay, sat between the trees leaning against the trunks, clinging to the earth, half coming out, half effaced with the dim light, in all the attitudes of pain, abandonment and despair … they were nothing earthly now—nothing but black shadows of disease and starvation, lying confusedly in the greenish gloom.
Conrad’s Africans begin as feeble creatures too weak to hold themselves up, too racked by the misfortunes that their blackness has bestowed upon them to stand tall and act with agency. They end as quasi-humans, of another world, their forms merged fully with disease and despair generated in the bowels of a continent composed of primeval otherworldliness. It is a testament to Conrad’s descriptive genius and literary influence, and unfortunately also to the strength of the associations he so vividly captures, that present descriptions of HIV/AIDS in Africa stray very little from this script.
“Soon Africa will be a continent of AIDS orphans,” begins CNN’s former chief international correspondent Christiane Amanpour in that television network’s 2006 documentary Where Have All the Parents Gone? A musical score of mournful reed flutes plays as a map of Africa appears on screen, emphasizing the exotic otherness of the continent. There follows an image of young “African” (in reality, Kenyan) children lolling in the dust as a baby cries and heavy breathing interspersed with despondent moaning is amplified over Amanpour’s voice.
Next we are introduced to Mukhtar, who we are informed is “another African boy who wonders whether he too will become one of the million AIDS orphans in Kenya.” The camera zooms in on his face while he watches his cachectic HIV-positive father breathing laboriously in bed. As Amanpour narrates Africa’s struggle with AIDS, the screen fills with images of shabbily dressed people in shantytowns shrouded by red dust. Later we learn that Mukhtar’s father, who was rejected by his family once they discovered his HIV-positive status, had considered killing himself, his wife, and his son with rat poison because they are “a burden” and he does not “want them to suffer.” This snippet of a modern HIV/AIDS film echoes Conrad at his best, playing up that which sets Africa and Africans apart. Never mind that there is no monolithic African identity; Kenyans stand for all Africans. They live in otherworldly dwellings surrounded by filth. They even have a different, warped sense of morality. We are left wondering what kind of creature would consider killing not only himself but also his young wife and only son—of course, a person “infected with HIV.” This is all before anyone questions whether it is ethical to display a young Kenyan boy with HIV-positive parents for millions of people to see. One wonders whether a white European or American child would have received the same treatment.
If this was but one representation, it might be excusable, but it falls into a panoply of images of HIV/ AIDS in Africa that play up stigmatizing identifiers. As recently as 2006, the New York Times displayed headlines screaming “Traditional Ways Spread AIDS in Africa, Experts Say,” deliberately evoking thoughts of strange ritual and exotic practices. We later find that one of these “traditional” ways is the universal practice of breastfeeding. Associations like this remind me of the poster I own from the AIDS charity Keep a Child Alive. Their public relations campaign unwittingly plays to ideas of African otherness while cementing the link between African-ness and HIV/ AIDS. In this image, the two are inextricably linked. Disease is African-ness and African-ness is a disease. So powerful is this association that a condition attributable to approximately 4 percent of the African continent’s population becomes the narrative for the other 96 percent. It results in the following conclusions relayed to me by a young Canadian woman working in Lagos, who described the reactions of her family members to her decision to move to Nigeria for a year: “My dad’s mom, when she found out I was going, she said, ‘You’re going to catch AIDS.’ I had an aunt who told me that I should bring a bag of my own blood with me … if I needed a blood transfusion.”
A New Yorker article about the possible origins of a theoretical next big epidemic consolidates the associations of African-ness with strange or backward culture and disease. It follows a Stanford University virologist who is desperately trying to educate local villagers about the perils of consuming monkeys because they are receptacles for disease. “When I see a monkey like that, dragged through the street, bloody, on the way to market, it’s like looking at a loaded weapon,” he says after seeing a woman carrying a monkey on the back of a motorcycle. The piece features Cameroonians covered in buckets of monkey blood and stresses that in the present day, with easy travel linkages between Cameroon and California, it’s not hard for a virus to move between populations. This article is a striking example of what the medical anthropologist and AIDS activist Dr. Paul Farmer calls a “symbolic network that stresses exoticism and the endemicity of disease.” In other words, diseases like HIV/AIDS come from people with “weird” or “backward” cultural practices—Africans who eat monkeys.
HIV/AIDS was not always associated primarily with Africa. Thirty years ago, the initial concerns about the virus were decidedly localized to the Western world. Homosexual men were initially vilified as the prime culprits for the propagation of the epidemic. At some point during the mid-1990s, when it became clear that there was an epidemic in Africa primarily spread by heterosexual sex, and when it became clear that public health programs along with readily available treatment in the West had led to a stabilization and decline in the number of new cases there, AIDS became African. That Africans in countries like Nigeria have not managed to control the spread of HIV/AIDS, as has been achieved in developed nations, supposedly reflects a host of vices for which Africans are constantly berated. We are disorganized and inefficient, so the virus spreads. We lack the intellectual capacity to create our own drugs and treatment protocols, so the virus spreads. We are untrustworthy and misappropriate funds for treatment programs, so the virus spreads. We lack compassion for the afflicted, so people die. In what might be the most unfortunate of ironies, we are stigmatized for stigmatizing: that is, according to the narrative, in developed nations people are cared for; they are not ostracized; they receive services and treatment. In Africa the infected, like Mukhtar’s father, are savagely expelled—as if fear of contagion is a uniquely African sentiment—cast out into the vast darkness of a physically and morally undeveloped continent. This is not to say fear and stigma do not exist, but they are not uniquely African phenomena.
HIV/AIDS is an extraordinary illness, especially because it creates a social dynamic that in some ways mimics the biological process by which the HIV virus damages the human body. In the same way that the HIV virus causes a breakdown in communication among elements of our immune systems, leading to an inability to neutralize it and other diseases, so too does its associated stigma break down relationships among people, preventing many of those who have it from communicating their need for assistance and treatment. Indeed, a former senior World Health Organization (WHO) AIDS program official described stigma as a stage of the HIV/AIDS epidemic, “the stage of social impact … marked by stigma, grinding down its victims with shame and isolation, creating an environment of secrecy and denial which are both catalysts for HIV transmission.” If to be open about one’s status is to don a set of scarlet letters that says “not one of us,” not human, then it is understandable why so many would remain silent about or ignorant of their status. The more the virus spreads, the more people die, and the stronger the stigma grows.
For me the impact of this stigma didn’t really hit home until after a discussion I had with a young woman I met at a bar on a military base about an hour away from the village where Doc worked and lived. We decided to make a trip to the Nigerian Army cantonment one afternoon for a drink. Because the area is predominantly Muslim and governed in part by Sharia law, the military barracks, with its multicultural, multireligious makeup of soldiers from all over the country, was the only place to get a drink, a cold beer, maybe even a rudimentary cocktail. The environment was perfect for the large army base, which was home to an infantry and artillery unit. There were acres of open field for firing ranges and target practice. A sleepy barracks with one- and two-story living quarters in strict rows occupied one corner of the base. The officers’ quarters were in another section nearby. Between them was an open-air space with multiple bars where young women served drinks and heaping plates of food to soldiers in fatigues. That’s where I met Elizabeth. She was a server at one of the bars.
I can’t remember exactly how our conversation started, but it turned quickly—as many of my conversations then did—to the subject of HIV/AIDS. Elizabeth was eager to talk. We agreed to meet later at a hotel where I was to stay the night so that we could talk with greater privacy.
Later that night, Elizabeth said, “I’ve gotten a sister,” meaning a close friend. “She stopped the drugs and she died. I never knew that she has been hiding.” We sat on the concrete veranda outside my guest chalet just before dusk. The hotel compound was full of similar chalets, simple concrete boxes surrounded by small grassy gardens fenced by small shrubs. A few stray chickens pecked at the gravel path for insects hiding between the pebbles. There were two WHO trucks parked beneath a red-blossomed flamboyant tree. I would find out the next morning that they belonged to two older British men managing a polio eradication campaign.
The receding sunlight lingered on Elizabeth’s face. Her full cheeks had followed her from childhood into her twenties, and a rather delicate and un-imposing nose appeared almost as an afterthought between them. She wore dark eye shadow. Earlier, at the bar, I had watched her move gracefully from table to table serving drinks, seemingly flowing despite the long, tight purple skirt that forced her to take small steps.
Her friend, Elizabeth told me, had been an excellent tailor. For that reason, Elizabeth had encouraged her to come up north to this town near the military barracks, where there was more work. Arrangements were made, and her friend soon journeyed from Cross River to Niger State to set up shop, start sewing, and hopefully earn some money. Her friend wasn’t to stay for very long. “Her mom died and she travel home,” Elizabeth said. “Later, I went home because I lost a cousin’s sister. When I saw my friend, she was down. I sympathized for her sickness and everything. Something swell her under the chest there,” Elizabeth said. She placed her palm flat against the right side of her stomach.
“I don’t know the problem. I was always asking her, and she said she don’t know. She don’t know. When she came back to us,” up north, “I took her to so many labs. They said she has a liver problem, that her liver has been affected like that. So I now send her with my other sister to my pastor that they should go for prayers. I call on the pastor. I said, ‘Please, my sister is coming for prayers. She’s not well. If she come, please interview her and ask her if she’s gone for tests. It’s not as if you’re suspecting her, but tell her: go test for this HIV thing, that you may be sick.’
“The man of God now ask her those questions. The man of God even assisted, gave her a thousand naira, and we went to the lab and did the test. That day they did her the HIV test, she was afraid when she came out. She didn’t want us to know. The lab man said there are signs of HIV, that we will come back and do the test maybe in a month or three months later, but that she should first go and treat that liver problem.
“I was afraid. I now had to call and tell this girl’s father that she is sick and I wouldn’t want any bad thing to happen and have them say I kept her here. But the first question the father asked me is ‘Has she dropped her drugs?’
“I said, ‘Which drugs, Papa?’
“‘She didn’t tell you she has a problem?’ he asked.
“The man now explained everything to me, that she has been on AIDS drug, that maybe she drops the drugs and that’s why she has been sick. He said I should send her home.”
The darkness had stolen over us slowly as we sat chatting. It was night now and there was no electricity. I could see glowing orange hurricane lanterns floating through the night as the hotel staff crunched across the gravel while winding up the evening cleaning. Quicker steps could be heard across the path in front of us to a hulking building that housed the hotel’s diesel generator. There was a click followed by a sputtering low rumble, then light.
“I never knew that she has been hiding, pretending that she was afraid of the result. So I question her that morning: ‘How long did you stop taking HIV drugs? When did you last collect them?’ She said she collected lastly three months ago. Then for two months she has not taken the drugs. That is why she is down. So they took her back home. I was told that they went and did her CD4 count test and other test. But later we still lost her. That is how HIV kill.”
Elizabeth’s face was heavy with pain. Her mind seemed tortured by the same questions that left me unsettled. Why had her friend kept up this ruse, gone for multiple tests, and feigned nervousness in anticipation of a result she already knew? Could she have been hoping for some miraculous change that would render her normal again, that would remove the disease that had her living undercover? Why such elaborate deception? Elizabeth will never know, but the likelihood is that the stigma associated with HIV/ AIDS forced her friend to hide her illness and possibly to discontinue the care that would have kept her alive.
“It’s not everyone that will see you having that problem that will be embracing you,” Elizabeth said after some time. “It’s not everybody that will embrace you back—even your sisters in the house. You understand? Even in the village of my sister that died, many people were saying it: ‘Sure say no be AIDS?’ Even the old ones were saying, ‘Abeg oh! We hear say nah [it is] AIDS. If nah AIDS, make she die. Make she no come distribute.’ Old women! They were saying it.”
She spat with disgust.
“I have a little sister, a friend, that was staying with us. She wasn’t drinking in the same cup that my sister who died was drinking. If we put soup together, she will not eat. She was always selecting the spoons so as not to share spoon that my sister was using. Even when she never heard of it being HIV, she suspected that it should be that. Two of them were best friends, but see, when one was sick, the other could not show that love. She was keeping her far from herself.” Elizabeth shook her head and raised her fingers to massage her cheeks. “So HIV prevent love. It cut relationship of love.”
HIV/AIDS-related stigma severs the connection that one person forms with another. It is so strong that it can even make speaking out about the disease problematic.
“You are the first person I am telling that my sister died on that,” Elizabeth mumbled to me. Her chin dropped to her chest. “But if I use her own example to help somebody, that is, by telling the person that, ‘See, my sister have died on this thing. Please!’ I don’t think that God will punish me for that. I know that God will have mercy on me that I am not abusing my sister.
“I want to talk to people concerning this thing. Me, I wanted even to stand in my village and at least arrange the women, the men, or the youth—all of them—and discuss it with them: ‘See this thing that you people are saying about this girl. Many of you, you have not been tested. Many of you have it. It may be killing some women, married women, they will not know! One two, one two they die. You won’t know if it is HIV.’ That is what I wanted to do. That is what I have determined in my mind because I feel that people are dying in that village and they don’t know what is killing them. Maybe it might be AIDS that is killing them and there are drugs to prevent the thing. Another of my sister said, ‘No! Before you will start saying those things, they will say we done carry am.’” Elizabeth sighed and crossed her arms. “I just left. They buried her, and I just left. I left.”
Elizabeth’s friend need not have died. But HIV/ AIDS has such power that it can cut people off from one another, leaving those who most need support isolated and vulnerable. Its stigma and the resulting fear of abandonment and discrimination make extremely difficult a greater openness that can help treat its symptoms and prevent its spread. An ordinary sickness does not cause so fraught and convoluted a reaction.
Elizabeth stopped speaking. We sat together on the warm concrete, our bodies separated by two bottles of Coke I had retrieved from the fridge in my room. Insects buzzed about the fluorescent light above us, their shadows floating across our bodies. Somewhere beyond the hotel compound, the highway pulsed with the horns of tractor-trailers warning cars, motorcycles, and pedestrians as they sped down an unlit road.
“When I think about my sister, I feel it very well,” she said after some time. “There is no day I don’t think about her since I lost her. There is a place we worshiped together where there’s a particular lady that sings ‘Everything You Find Is in Jesus.’ If you find money, that it’s in Jesus; if you find health, it’s in Jesus; if you find life, it’s in Jesus. If they pray such prayers or sing such chorus now, I really feel. I will be in the church crying. I cry for her own. I do feel her. I’ve not forgotten about her. I feel her very well.
“I shed tear for my sister each time when I see people surviving with this thing. In fact, when I was sick with ulcer, I went to Nnamdi Azikiwe Teaching Hospital, and if you see the lineup of people with HIV to collect drugs, that’s why I say, ‘How can you just lost your life like that?’ You understand? Because people go there and take drugs free! Then how will you just stay and lost your life like that? I don’t think God has designed that she has to die. She doesn’t have to died.”