Our Kind of People: A Continent's Challenge, a Country's Hope (13 page)

We do not like to look at death. It has remained abstract primarily because we have separated ourselves from its physical form through ceremony and ritual designed to control or appease the violence it offers. Burial, cremation, and the ceremonies that surround them allow for an effective disposal of death in its physical form while providing a platform for the collective expression of the emotions death calls forth. HIV/AIDS flouts these culturally constructed barriers between the worlds of the living and the dead and in so doing disrupts the normal process of grieving.

Obong, the driver from Abuja, had lost seven friends to HIV/AIDS. He had even driven the coffins of his friends from Abuja to their villages and final resting places. Death from HIV/AIDS was not new to him, nor were the associated burials.

“Like in my place,” he said as we sat there, “if somebody die, if they have children, if they bury you, your family will not go to farm until seven days. That is the respect they will give to you because you are family man. Maybe they hear that this other village trespass, find trouble, kill our youth. If you see the kind [of] burial they will give to such person, you will now know that yes, you were a good person in society. When you die, if because of that HIV and AIDS, your burial will just be as if they bury dog. They will say, ‘What are they keeping you for? You were not responsible. You did not leave anything behind, no legacy. So there is no need of feeling pains.’ I’m telling you this. As far as youth just dig hole, they put you there; they cover. The next day, people go to their farm, continue their life. It’s just like this bird flu killing fowl. They will say the breeze have touched you, so they have to bury you according to the way you live your life.” He sat quietly after he finished speaking, and sighed heavily.

It appears that in Nigeria, death comes in flavors: good and bad. A good death is one that unites a community in its emotion and allows for public expression of grief. In a good death, the deceased is someone who in life strengthened the fabric of society by contributing and through death has the power to do the same by bringing people together. The death of an elderly person who leaves behind family and the death of a young person in the service of the community are life affirming. Death in these situations is seen as normal and reflective of good character. A bad death is one that divides a community and is either indicative of or results from bad character. Because HIV/AIDS confuses the lines between life and death, it turns death into an abnormal, unnatural process. This kind of death cannot be ceremonialized. There is no gathering of community, no expression of collective emotion. There is the sense of something incomplete.

“That is how life is,” Obong finally said. “There’s no two way about it. If you dance good, you dance to the end. But when you dance bad, you dance halfway.”

He readjusted his shades to fully cover his eyes with the shimmering blue lenses. He didn’t look at me.

T
he link between HIV/AIDS and death is especially hard to sever, but the way we think about HIV/AIDS and death is changing—primarily because so many people living with HIV/AIDS have fought to reimagine the perceived death the rest of the world assumes they live.

In Lagos, at their offices near a Julius Berger Construction Company staging ground by the lagoon, I met an HIV-positive woman who worked for the Nigerian Business Coalition Against AIDS (NIBUCAA), a foundation set up by a consortium of companies—Julius Berger included—addressing the issue of HIV/ AIDS in Nigeria. We spoke just outside the office, so as not to disturb her colleagues working inside. The air smelled of diesel and industrial products, and the landscape that stretched out before us was bleak. Crushed gravel, chain-link fences, scrap metal, rebar, and other building products, along with the constant churning noise of large trucks exiting and entering the premises, gave the setting a postapocalyptic feel. We stood in a corner of a carport freshly painted in white. An odd collection of black butterflies fluttered around a Mercedes parked in front of us.

“Like for me when I just tested, I’m used to wearing trousers and tops—small tops,” she said as we leaned against the wall. She had the slight frame of a fashion model, if a little short, with a delicate face framed by her relaxed hair. Her skirt suit was cut to just above her knees, and her smooth calves tapered into a pair of black dress shoes.

“And then all of a sudden I start wearing something long,” she continued. “I would cover my head. I won’t talk to people. I wanted to stop schooling. When after we knew it was HIV, my strength was very low, and at that stage I wished death could come. There was one day, two days I didn’t take my bath, but death didn’t come. Death didn’t come. Then I decided to take my bath. And despite the fact I used hot water, I was cold. I was shaking. And I prayed to God that if death did not take me now, then I should be able to live and
live
. After that night I was just praying that if death could not take me now, then I’m going to live long. Then one day I just said, It seems you’re hiding. Are you ashamed of yourself? Why are you ashamed? You still have a lot to live for. Your father and mother still believes in you. Your family still believes in you. You can still do something. I started my medication December 2004. Then I bounced back to life. I went back to school—although I had an extra semester because I missed all my exams. And I just moved on in life. Ever since then, I’ve always been on the move. I’m always on the move.”

I could believe it. As we talked, she constantly bounced her shoulder against the wall. She seemed so possessed of energy and motion that I wondered how she was able to work at a desk in an office.

“The next question I asked myself was, I have to learn about this disease that wants to kill me. I started going to the Net, go to the Web, start searching for ‘human immunodeficiency virus,’ the virus I believed would kill me. But eventually you find out more, that this virus does not eventually kill. Other opportunistic infection kills the person. And if the person is at the stage of denial, the person may end up dead. So that’s how I became open about my status. I learned more. I started going to workshops, trainings. Another thing I did was to join a support group, AIDS Alliance Nigeria. I remember the first time I went to support group. I saw more than two hundred. People that are older than me. People that are younger than me. I said, ‘Ah! So all these people are living with HIV.’ The thing that amazed me even was that they were quarreling about they were supposed to give them food. They were quarreling about it—transport allowance. I was like, ‘Ah-ah? These people are not even thinking at all about death.’ I was just amazed, and that inspired me like, if these people can live and still struggle like this, I can do more things.

“It’s not as if I’m really proud to be living with HIV, but I felt there’s a need for me to be doing something positively. And the way to affect people’s lives positively is to let people know that OK, the message is true—it’s a fact. Because a lot of people believe that AIDS is not real. And for me to do that, I have to become open about my status. I have to tell people. And after telling them the message that this person you’re seeing is really living with HIV, and she’s been coping, and if she can cope, you too can cope. And if she’s positive, then anybody can be positive as well. And if you’re negative, there are steps you can take to remain negative and live your life as well.”

In her essay “Beyond the Politics of Bare Life,” the anthropologist Jean Comaroff writes, “Claiming positive identity can be tantamount to a conversion experience: quite literally a path to salvation. ... Rebirth through the disease likewise involves standardized formulas of self-declaration, a passage to new ontological certainty and transparency that claims to reverse the deceptions of prejudice, secrecy, and untruth.” This is to say that there is life after perceived death, that it can be lived completely, fully, and with renewed purpose, that being positive, in both senses, can engender a new HIV/AIDS paradigm that emphasizes life. In the words of another activist I spoke with, an Igbo man who had been HIV positive for ten years, “Life begins when you know your status. If you don’t know your status, life has never begin. Like that 2001, I know my status, that is a new life I begin. ... It’s a new life.”

This new life begins only after an intense reckoning with HIV/AIDS-related death. It does not come by ignoring or denying the fact that HIV/AIDS can kill even under the best of circumstances—after all, Ikenna was compliant with his treatments and very active in his community of HIV-positive people—but by recognizing that each individual death is important, because it represents the loss of a human connection. Preserving and enhancing these connections in the face of the epidemic can serve as the motivation for further action.

In recent years, there has been a downward trend in the number of HIV/AIDS-related deaths in sub-Saharan Africa. In Nigeria, the number of reported deaths related to AIDS has stabilized and is no longer increasing. As fewer people die and the number of people living openly, positively, and productively increases, it becomes harder and harder to complete the equation HIV/AIDS equals death. And as these people live fuller, more visible lives, more accepted lives, their presence and vocality demand a discussion not only about what HIV/AIDS means in a community, but also about how that community can ensure that all people, positive or not, are positively influenced by the epidemic.

N
igerians are not known as a quiet people. “In the beginning,” writes the Nigerian essayist Peter Enahoro, “God created the universe; then He created the moon, the stars and the wild beasts of the forests. On the sixth day, He created the Nigerian and there was peace. But on the seventh day while God rested, the Nigerian invented noise.” Ours is a noisy country, so loud sometimes that, even in rural areas, it can be difficult to hear your own thoughts above the constant commotion of Nigerian life. At all times, somewhere someone is offering greetings, arguing, partying. The streets of our cities and the dirt roads of our small towns teem with a million conversations held over the background noise of music blasting from car speakers or twanging out from tiny handheld radios, as well as the nearly constant rattle and rumble of ubiquitous standby generators. We are opinionated, and we are loud even when wrong. We protest and we riot. We do not shy away from controversy. And perhaps because we are rooted in an oral culture, we revel in the sounds of our own voices: introductory remarks take up volumes; toasts leave raised arms trembling; speeches, if they ever end, never end before the speaker’s time is up. But for all the talking we do, until relatively recently, we have been noticeably silent on the subject of HIV/ AIDS.

If the current HIV/AIDS epidemic has a characteristic that sets it apart from other epidemics, it is that this is the only mass outbreak of disease that has happened quietly. In fact, so quietly did it spread that for the first twenty years of the epidemic, as a society we had to question whether HIV/AIDS was actually real. This is changing. Recently there has been more of a collective acknowledgment that HIV/AIDS is very real. It is now a term that everybody knows something about, and this is reshaping the way we behave toward the virus and people who have it. Speaking more openly about the disease, while not a solution to the epidemic in and of itself, is an important first step.

This is a disease that thrives on silence. The virus is a quiet pathogen without any specific disease markers that make it easily differentiable from other illnesses. It usually displays symptoms that announce its presence only at the very end of an infected person’s life. Those who have it and those who have recently contracted it don’t necessarily know they have it unless they specifically ask. Those who do know they have it are often quiet about their status because of stigma and discrimination.

In Nigeria, the most prominent person to die of HIV/AIDS was the popular Afro-beat musician Fela Kuti, whom I mentioned earlier. Fela was one of the country’s most flamboyant entertainers and loudest activists, a perpetual voice of protest and a constant thorn in the side of Nigeria’s ruling elite. He often performed his songs of social commentary and protest shirtless, sometimes in nothing more than a pair of skimpy briefs. The author of songs like “Shuffering and Shmiling,” which chronicled the indignities of everyday working-class Nigerian life, or “Zombie,” which articulated many a Nigerian’s disgust with a succession of oppressive military regimes, Fela came as close as possible to representing what one might call the voice of the people in a chaotically pluralistic country like Nigeria. He also lived what has been called a “safe-sex educator’s nightmare,” swearing off condoms and maintaining a rotating system of twelve wives after initially marrying twenty-seven women in one ceremony. Despite his brother’s role as minister of health during the 1980s and the architect of Nigeria’s initial response to the HIV/AIDS epidemic, Fela refused to believe that he had the condition, let alone to speak out about its presence and impact on Nigerian life. Some have criticized him for this position, given his stature and great influence. In 1997, he died from Kaposi’s sarcoma—an AIDS-related cancer—and through his death probably did more to galvanize a fledgling HIV/AIDS movement in the country than he ever could have while alive. The announcement by his brother, Dr. Olikoye Ransome-Kuti, that Fela had died from AIDS was the first time many Nigerians had ever heard of the disease, despite its long existence in the country.

“When my father was diagnosed with HIV/ AIDS, we couldn’t understand,” Fela’s son, the world-renowned Afro-beat star Femi Kuti, said to me when I met him at his New Africa Shrine in Lagos. The shrine was built on a concept similar to his father’s earlier Kalakuta Republic. The Shrine, as it is simply and commonly known, is a concert hall with living space and offices in the back, in the heart of the Ikeja section of Lagos. It is open to all regardless of status. More than anything else, the New Africa Shrine resembles a large open-air warehouse with a stage at one end, a bar at the other, and plastic tables and chairs haphazardly arranged on the concrete space in between.