In the tradition of J. Anthony Lukas and Randy Shilts, journalist Jacob Levenson has woven the stories of doctors, social workers, activists, policy makers, researchers, and people living with HIV and their families in The Secret Epidemic: The Story of AIDS and Black America (Pantheon, 2004). In considering how AIDS eventually became a predominantly black epidemic in the United States over the past 25 years, Levenson explores the intersections among public health, crack cocaine, sexuality, the black church, urban America, and the battle for civil rights. The book promises to reframe the national discussion about AIDS and help inspire debate that will transform the conversation about race in America. Harvard Professor Henry Louis Gates, Jr. wrote, "The importance of this book at this critical juncture cannot be underestimated."
At a panel discussion in OSI's New York offices, Levenson discussed some of the particularly complex issues involved in conceptualizing and writing The Secret Epidemic as well as his observations on race, politics, and social structures. He was joined on the panel by a couple that is featured prominently in the book: OSI Individual Project Fellow Mindy Fullilove, one of the first black researchers to investigate the black epidemic and the author of the forthcoming Root Shock: How Tearing Up City Neighborhoods Hurts America, and What We Can Do About It (Ballantine Books, 2004), and Robert E. Fullilove, who is the associate dean for community and minority affairs and a professor of clinical sociomedical sciences at the Mailman School of Public Health of Columbia University. The Fulliloves co-direct the Community Research Group at the New York State Psychiatric Institute and Columbia University.
The discussion was moderated by journalist Michael Massing, a frequent contributor to the New York Review of Books and other publications and the contributing editor of the Columbia Journalism Review. He is author of The Fix (Simon & Schuster, 1998), a book on America's failed drug war.
Summary
The panel discussion focused less on the specific stories and history of the black AIDS epidemic, as related and examined in The Secret Epidemic, than on issues of race, health, and policy in American society.
In his opening statement, Michael Massing drew attention to a key theme in the book: the need for a new language to discuss the severe social and economic problems in the United States. These problems—notably poverty, drugs, and disease—have been largely neglected over the past few years since the Bush administration took office. However, he said, conflicting emphasis on "root causes" and "personal responsibility" continues to hamper efforts to address the problems, as does the question of "how do we talk about race." Massing said that if people are "frank" about race, the problems may be ghettoized; those who don't talk directly, meanwhile, are often "accused of deception" or of being politically correct.
Jacob Levenson concurred, saying that "we have lots of ideas and conceptions [about race] based in the past," but that these cannot adequately address contemporary problems. In writing the book, he said he realized that even though race has a tendency to "blow up" on people it was necessary to "let black people talk about the race issues" when telling their stories about HIV and related health and social ills.
He acknowledged his own and others' concerns about whether a white man could—or even should—write about an apparently race-specific topic, given what this decision might imply for the author, the community, and the country in general. Levenson said he ultimately realized, however, that it was appropriate: "I decided I needed to speak freely, critically, and candidly, even though this was a terrifying thing to do."
Levenson said he was keen on highlighting the thoughts and work of Mindy Fullilove and her husband, Robert, because they were "looking for fresh ways to deal with old problems" and to take "unconventional approaches." Their work in public health and poor communities is groundbreaking, he said, because they have helped transcend "tired" civil rights-era rhetoric about race and promote the belief that what's happening among black communities is "universal." By this logic, problems such as rising HIV rates can only be dealt with successfully when they are viewed as issues directly affecting the entire nation and its social fabric.
In her comments, Mindy Fullilove discussed some of the issues she has focused on over the past several years. She believes the country is "in a period of structural disintegration" in which diseases are being created and spread "faster than we can deal with them." She noted the links between concurrent epidemics of crack cocaine use, HIV, mental illness, multidrug-resistant tuberculosis, and obesity—many of which afflict individuals simultaneously. "We'll have public health gridlock and breakdown," she warned, as obesity epidemics turn to diabetes epidemics and there are insufficient resources or caregivers available.
Fullilove pointed to other structural problems that are increasing in tandem with such dire health concerns. A "growing number of people can't afford rent where they want to live," she said, especially among those in their twenties who would like to raise families and set down roots. It is "very important to start having a conversation to invent solutions" to these problems, she added.
Robert Fullilove agreed with his wife, noting that "the pocketbook" is what most people are concerned about now. "Race is not a factor when you can't afford to send your kids to the school you want to," he said, or when a community is "slowly disintegrating" due to gentrification. He maintained that these problems are spreading, and thus are no longer issues solely related to race or poverty.
Unfortunately, he said, national priorities have not kept up with these developments. "The war in Iraq takes money," he said; thus there is "no money for ADAP [AIDS Drugs Assistance Programs]...or for the obesity and diabetes epidemics."
Mindy Fullilove's presentation concluded with comments about a potentially hopeful development that occurred in Pittsburgh in the late 1990s. As part of its urban renewal plan, the city government announced that it would knock down tall apartment buildings in the Hill District, a predominantly black neighborhood near downtown. At the time, Fullilove said, she was in Pittsburgh delivering a paper about "what happens to people when they're displaced" and how this often increases "risky behavior" that can lead to HIV and other deleterious health consequences.
Fullilove said that although the district's residents were aware that tearing down the projects "would have negative repercussions," they "had no language" to express their concerns. In response, she helped organize five teach-ins where people could express their concerns and consider ways to make them known more clearly and forcefully. Eventually the mayor backed down from his government's plans to destroy the buildings in the face of hundreds of demonstrators united in saying, "We don't want to be replaced."