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
Published March 10, 2004 9:00PM (EST)

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.

Then there's this other issue. My sense is that a lot of the really great journalism and films made about AIDS and gay America were so riveting, and that, for all the suffering that gay America endured, they really advanced the issue of gay life and gay culture and rights. AIDS blew our assumptions about them out of the water and really brought them into the mainstream.

Part of the reason that happened was because gay men, and certainly gay men living with AIDS, wrote these books and wrote these plays. And in some ways, we expect these communities -- in the culturally sensitive world we live in -- to tell their stories, and then we can embrace them. The "other" is not supposed to come in and do the piece.

That worked in the gay community, but when you deal with communities that were literally falling apart, and an epidemic that was hitting people who weren't necessarily educated, and throw on top of that the idea of all the shame and secrecy, we didn't see the wealth of journalism and memoir and art come out of this epidemic in black America. Once you have that wealth of art, it gives the media traction to engage.

That said, it has been a failure of the media not to take some responsibility. It's constantly amazing to me while I was writing that there was so much incredible material and no one has written this book. It's almost absurd. Early on, I was this 25-year-old kid who stumbled into this almost by accident, 18 years into the epidemic, and to have numbers in front of you that say that over 100,000 black people have died of AIDS, it's phenomenal that this book hasn't been written six times over.

What kind of response has your book gotten from black readers?

The response I've gotten so far has been really great. The black people who've read the book have seemed really engaged by it. The people who read it felt very connected to the characters, and that I captured something about the experience, which to me was really gratifying.

The white people-- [Laughs.] The response I've consistently gotten is, "Wow, I never would've thought I would've wanted to read this. Who wants to read another AIDS book?" Which is really honest. The truth is, I wouldn't have wanted to read an AIDS book. I consider myself someone who has a public consciousness and is interested in public health and knew about AIDS, but quite frankly, I felt like I'd heard about AIDS and didn't want to read another book about suffering and dying. The outcome seemed predictable.

But then reporting the book, I started out asking really basic questions, and I found that AIDS put the 25-year history of race and the lived experience of race into a really dramatic relief. I had this pastiche of fragments and moments and memories that were so powerful. That kind of unvarnished window into their experience was exciting and gripping for me, and I found that the white people who've read the book have really been drawn into that.

How did you get interested in the subject in the first place?

I was studying at the Columbia Journalism School and, through that, covering an education story in Harlem. A member of the PTA came up and said, "You want a real story, talk to all the kids whose parents are dying of AIDS." My response was, "Wow-- huh?"

Then I started to report it a little bit, and what I found was that AIDS has been disproportionately black since the moment the epidemic began. That was another "wow" moment. We're 18 years into the AIDS epidemic, there have been thousands of stories written, plays, books, movies, and I haven't really heard this. What happened here?

Then as I reported more, I realized that AIDS intersected with crack cocaine, heroin, the black church, the legacy of the civil rights movement, the American South, the Congressional Black Caucus, and the crumbling of Harlem and Oakland [Calif.]. These were things I had always been really confused by, interested in, but always had a hard time wrapping my mind around.

I had been dissatisfied with the culture of racial debate in this country -- it felt very stilted and cautious. Too often it was either always peering backwards at the civil rights movement and these heroic figures and how we overcame 200 years of institutionalized racism, or else painting people in terms of their victimhood, or else, more often -- with most of us, myself included -- there was this sense of caution. As a white person I'm really not supposed to be thinking about or being critical of black people, or really engaging them in any kind of serious debate. And if I do, it's a fairly dangerous road to traverse.

I'm about as white as they come. I'm glow-in-the-dark. And this question dogged me the whole way through: Why are you doing this? Why have you been interested in this subject? Have you been touched by this? Do you have a black friend?

But working on the book not only empowered me to engage with the black community in a way that felt honest and way freer than I ever felt before, it made me feel more comfortable talking to my white well-meaning, liberal friends about race in this open way, which for so long has felt really stilted and uncomfortable. What I found was that more than black people, white people were nervous about me writing this book. You know, "What are you getting at? What are you trying to say?" My agent said, "White people don't get book contracts to write about blacks."

How did you get the subjects of your book to trust you enough to really open up? And how did you find your own attitudes about race changing?

Even now I'm doing these readings and I'm on the radio and I'm talking about subjects like the black church, black sexuality, and the social breakdown of the black community, and I'm thinking, "My God, am I killing my career? Am I going to be crucified?"

I didn't really know my head from my feet when I got into this topic. It was this huge, complicated thing that I couldn't get my mind around. But I made two decisions. One was, I'm never going to even try to sound faintly black. I'm not going to try to ingratiate myself that way. But I'm also not going to censor myself. I'm not going to try to over-empathize and say, "I don't know, I can't imagine where you're coming from, please just tell me." I decided that in my interviews, I was going to ask whatever questions came to mind, no matter how critical or potentially explosive or racially sensitive they were. Bearing in mind that I would communicate them in sensitive, respectful ways.

About a year into my research, I was sitting with Bob Fullilove [one of the book's central characters], and he said, "Jacob, you don't know this, but you've crossed the boundary, you speak the language, you talk like a black person." And I was like, "Huh?" I sounded about as white as they come.

What we talked about was the fact that so often when black people talk to white people, they experience the white people being so overly cautious and running over what they're thinking before they say, and self-censoring themselves. He agreed that being on the black end of that was very patronizing and not very trustworthy. When you speak to someone who's holding back, it's kind of unnerving -- you feel like they're privately judging you. From my end, as a white person, why would I ever want to be in a relationship with someone I really can't say anything of substance to? By engaging in that way, what I got was serious engagement back.

Was there a difference in talking to someone like Bob, a professor, versus talking to someone like Sarah [another character], who has little experience dealing with whites?

In a way, not so much. That was something I had to overcome. Obviously me and Bob, you know -- we've gone to the same schools, and he's taught at some of my schools, so we're speaking the same kind of economic and emotional language in some ways. But what I found was, with Sara or Desiree or other people I interviewed, when I assumed a level of emotional complexity with their experience, what I got was extremely sophisticated and powerful emotional material.

At the same time, for instance with Desiree, she's coming out of this church world, and this life in Oakland that was totally different from mine -- the fact that I engaged like that didn't mean I was always right. In fact, you're wrong a lot of the time. I don't want to give the idea that I presumed all this insight and what I got was constant affirmation. But I was willing to be wrong, saying, "I don't understand. You say the fact you were raped wasn't a big deal, but explain to me why you didn't react differently," instead of just accepting her answers and saying, "Well, of course, she's just so different than me. I just have to accept it and write it that way." What I invited were serious answers. And what I got was insight.

How do you think this book would be different written by a black author?

I really would hesitate to presume how it would have been written by someone in the black community. What Mindy [Fullilove] told me from the beginning was, "I am saddled with a segregation consciousness. There are things I can't see freshly."

She said to me, "You're going to be able to see this; you're not saddled with so much stuff." And that allowed me to in some ways engage very deeply but also keep some emotional distance. I didn't carry the burden of the race on my shoulders. I'm not saying that every black person necessarily would have, and I definitely wouldn't say that my perspective is better -- it's just different.

Yet any time an outsider writes about another community, you risk being patronizing. Did you encounter that problem?

I certainly think I'm up against that. I think that is going to set off alarms with people; it has all the way through. I think when people see my face and my name, some people are simply not going to read the book because of that. A friend of mine, when the book was being shopped, just by coincidence was living with an editor. She saw the book proposal on the table, and this editor was black, and she said, "This white boy is not going to be writing this book for me."

You are going to get that. But what I've heard from black people -- and this isn't a scientific sample -- is that there's nothing patronizing in this book, nothing stereotypical. For me, I would've been bored out of my mind writing a book that was patronizing -- which for me means reducing people to either to victimhood or elevating them to heroism, or simply reducing their story to one of AIDS and disease and suffering without painting them in some kind of complexity and really investigating them. To me, that investigation means respect.

One of the things I feel strongly about is that we need in this country to start engaging in serious and substantive ways with each other -- blacks and whites and members of all groups. When we disengage, that's when a huge segment of American society suddenly becomes invisible. Things like AIDS come out of that, things like crack cocaine and violence come out of that.

The chronology of the book ends in 2002. Since then, has the state of the epidemic improved?

It doesn't seem to be so. The CDC has been estimating pretty consistently for the last few years that 40,000 people are getting infected annually, and pretty consistently the proportion that's black has been increasing. I certainly think there have been major inroads made with heroin and needle-exchange programs in various communities. The amount of money, generally, that the Congressional Black Caucus has won for communities of color and AIDS has grown. And there are people on the ground who are doing incredible work and doing work to mobilize black America.

But what I'm more struck by is that after that initial burst of interest, the issue then faded from the public consciousness. It really doesn't seem to be considered a national problem, but a problem for black America and black Americans to deal with, not something that you or I should be concerned about: We should feel bad, but it's not our job to engage or think about it seriously.

But AIDS is really just the tip of this far more complex and rich iceberg. In some way AIDS is a dramatic symptom of a whole series of other forces that we're not dealing with as a society. In that sense, AIDS has tremendous potential to open up discussion and conversation, in ways that will be painful but also exciting and freeing. AIDS doesn't just intersect these issues, it crystallizes them. To see it just disappear from the consciousness is troubling. It feels not only like a public health tragedy but a missed opportunity.

People try to alert the country by saying the disease is threatening to break out of black America and it's just a matter of time. But it's really that the issues that intersect with the epidemic absolutely have broken out of black America. The story becomes about society as whole, a window into all these different problems and conditions that affect us all.

Christopher Farah

Christopher Farah is an editorial fellow at Salon.

MORE FROM Christopher Farah

Related Topics ------------------------------------------

Aids Author Interviews Books Nonfiction