Our Kind of People: A Continent's Challenge, a Country's Hope (6 page)

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.

T
he 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: