AIDS: The black plague

Jacob Levenson talks about his new book, "The Secret Epidemic," which reveals a truth America has refused to confront.

By Christopher Farah

Mar 10, 2004 | From the beginning of the epidemic in the early 1980s, AIDS in America has been just as devastating a force in the black community as among gay men, if not more so. By 1986, a quarter of all people with AIDS in the United States were black. Even more ominously, a whopping 57 percent of all infected children were black; the disease was striking at the very roots of the community, burrowing its way deep inside. Ten years later, 54 percent of all new cases were black. And the situation hasn't improved much. Last year, 20,000 of the total 40,000 new AIDS cases in the United States were among African-Americans -- though blacks make up only 13 percent of the U.S. population.

This phenomenon is reasonably well-known to public health professionals and those who have followed the epidemic closely. But with all these black people dying of AIDS in America -- and with the world's attention increasingly focused on the disastrous spread of the epidemic in sub-Saharan Africa -- why is the American public at large so unaware of the depth of the problem? Why aren't movies being made, actors making speeches, singers holding benefit concerts? Jacob Levenson's new book, "The Secret Epidemic: The Story of AIDS and Black America," takes an important first step, documenting the history of the disease in the black community in a comprehensive and accessible way. Perhaps more important, it also dissects the nature of the silence that has hung over the black AIDS epidemic like a shroud.

This silence -- within the media, the government, the medical establishment and the black community itself -- has allowed the disease to fester among blacks, even as gay America has, to some extent, managed to contain it.

In trying to understand and expose the causes of this seemingly self-imposed ignorance, Levenson goes far beyond the story of a virus. Ultimately, this is not merely a book about AIDS. The people in this story don't grapple just with the effects of the disease, the families it destroys, and the death it wreaks, but with all its implications. Over and over again, the book's characters -- scientists, political activists, mothers, fathers, children, victims -- ask the question: Why?

Why does Rebecca Jackson, a young girl in rural Alabama, refuse to take her medicine, fail to show up at doctor's appointments, even as AIDS steadily ravages her body? Why does her boyfriend refuse to be tested, even though they continue to have sex with each other?

Why does Dr. Mindy Fullilove, an AIDS advocate trained at Columbia University, encounter so much resistance from the medical and research establishment, as well as from the black community itself, to funding the only kinds of studies and outreach that can help her and other scientists treat the spread of this disease? Why have the neighborhoods where she and her generation of black Americans grew up deteriorated beyond recognition? Why are so many girls prostituting themselves for drugs -- and so many boys who treat them as sexual property? How could things get so bad so quickly, so soon after the 1960s offered so much hope?

The search for answers to these human questions drives "The Secret Epidemic." Through the stories of these characters -- told delicately and yet powerfully, with a mastery of language, imagery and pacing surpassing that of many novels, let alone works of nonfiction -- we engage much more profoundly with the issues that shape this epidemic than we ever could with a simple policy book.

The "secret" epidemic of the title is more than a disease -- it's an epidemic of crack cocaine and heroin, urban decay and disintegration, human and sexual depravity and, in the end, total hopelessness. Mostly, it's an epidemic of failed communication, the failure of all involved parties -- politicians, activists, clergy and average citizens, black and white -- to articulate these problems in a way that, yes, goes beyond racism, but also goes beyond the stultifying language of political correctness and cultural relativism.

AIDS, Levenson argues, is simply the culmination of all these social diseases, the result of the cultural walls that exist between black and white America, walls that have only grown higher, thicker and stronger since the civil rights movement of the 1960s.

Levenson himself, as you may have guessed, is not black. While it's not unheard of for a white author to write a probing analysis of black American sociology -- Nicholas Lemann attempted this with "The Promised Land" and mostly succeeded -- the taboo against open communication about race is so strong in this country that for Levenson to presume to write such a book seems like an affront to our sensibilities about the meaning of "black" and "white." How dare he believe that he can understand what black people go through?

By telling the story through the eyes of those enmeshed in the struggle, Levenson avoids the patronizing tone that can invade the writings of an outsider about a sensitive topic. What's more, by refusing to back down from addressing the most sensitive issues facing black America -- AIDS, drug addiction, the hypocrisy of religious leaders, the decay of urban life -- Levenson's book begins to create the very language necessary to effect a meaningful change in how the races understand each other, and themselves. The kind of change that can give birth to the same level of public engagement that helped slow the spread of AIDS in the gay community. The kind of change that can provide the only real solution to the black AIDS epidemic, and to so many of our society's other ills.

If "The Secret Epidemic" has a flaw, it is perhaps that it doesn't feature Levenson prominently enough. He addresses his experience in writing the book briefly in the epilogue, but it would have been nice to see his perspective articulated directly elsewhere as well. Not because his personal story even approaches the drama of the lives presented in the book -- his role in the black AIDS epidemic is peripheral -- but because his position as an outsider straining to gain insight into a community that isn't his own epitomizes the book's central conflict.

Levenson spoke to Salon about the challenge of writing this book from an outsider's vantage point and about the steps that the nation needs to take to address this crisis honestly.

There have been so many movies, programs and articles written about AIDS in America, and we're starting to hear more about the horrible crisis in Africa. Yet there's little sense that America is growing more aware of the AIDS epidemic among African-Americans. Why?

This is part of the weakness of the media. There was an explosion of stories about this from 1998 to 1999 or 2000, because the Congressional Black Caucus [made it an issue], with this framework that said, "Well, the epidemic has shifted to blacks from gays" -- when it hadn't really shifted, because it's been disproportionately black from the beginning. But if you're a newspaper, how do you capture this today? It's not breaking news, so it's not an easy thing to write about in the papers.

Next Page: "More than black people, white people were nervous about me writing this book"

• View blog reactions