The Secret Epidemic: The Story of AIDS and Black America
By Jacob Levenson
Pantheon, 307 pages, $25
The Invisible People: How the United States Has Slept Through the Global AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time
By Greg Behrman
Free Press, 352 pages, $25
Women in the Grove
By Paula W. Peterson
Beacon, 205 pages,$20
Since the first cases of the disease that would come to be known as AIDS were documented in summer 1981, the ensuing global pandemic has been shaped as much by race, gender and class as by sexuality. From the U.S. to South Africa, governmental and UN statistics show that poor blacks–and especially poor black women–are far more likely to suffer from HIV/AIDS than their white counterparts. And although American pharmaceutical companies have, over the last decade, produced drugs that can dramatically extend the life expectancy of people with HIV/AIDS, these drugs have not been made widely available to all who need them, a policy decision that affects people in Johannesburg, South Africa, as well as Choctaw County, Mississippi.
While the epidemiological figures have been repeated so many times in the popular press that they have become axiomatic, we do not yet have government-led policy initiatives that seek to provide systematic solutions to the national and global epidemics. Three recently published books–Jacob Levenson’s “The Secret Epidemic: The Story of AIDS and Black America,” Greg Behrman’s “The Invisible People: How the United States Has Slept Through the Global AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time,” and Paula W. Peterson’s “Women in the Grove”–elucidate the extent to which AIDS is a complex medical, social and political problem, and explain why there is such a profound disconnect between our understanding of AIDS and our ability to combat the epidemic.
Levenson’s title, “The Secret Epidemic,” tricked me. I thought the book was going to be about African-American men “on the down low,” or “DL,” a subject that, as of late, has become one of the most discussed aspects of AIDS in the black community. According to recent media coverage of this phenomenon, including a New York Times Magazine article and an episode of Oprah Winfrey’s show, some black men who refuse to identify as gay or bisexual secretly have sex with other men and return to their female partners, sometimes infecting them with HIV.
For the most part, the media have sensationalized the down low and implied that this secret lifestyle is to blame for the disproportionate infection rate among African-American women. Levenson departs from that line of argument. Instead, the “secret” in his thoroughly researched and well-written book has two major components: first, that AIDS in America is deeply connected to poverty and racism, much as it is in a nation like South Africa, and second, that the only way to combat AIDS in America, particularly in black America, is to acknowledge that we must eliminate more than the disease itself, a challenge undertaken by several academics and activists since the late 1980s, although few outside their circles have listened to the solutions they have suggested.
Levenson weaves together stories about how individual African-Americans struggle to deal with AIDS in the face of a drastically underfunded social-welfare system with descriptions of social-scientific research and its effects on policymaking. We learn about a family in Mississippi in which two women struggle to get, and be healthy enough to take, the drug regimen that many now assume has solved the AIDS crisis in America. The story of these women suggests, quite rightly, that only some Americans with AIDS have access to these life-saving drugs. Levenson also introduces us to Alabama native Laura Hall, who cares for her 23-year-old son as he dies of AIDS and then becomes an AIDS activist. Angered by her son’s death, Hall not only tries to raise awareness about AIDS in the black community at the 1992 Democratic National Convention, she also joins an ACT UP protest in the streets of New York City to fight government inaction.
The most impressive woman in Levenson’s book is Dr. Mindy Fullilove. Fullilove is a psychiatrist who began her career as a researcher in San Francisco and is now a professor of clinical psychiatry and public health at Columbia University. She has dedicated herself to considering AIDS in relationship to structural problems such as poverty and the lack of housing, and health issues such as post-traumatic stress disorder and drug use. For Fullilove, and ultimately for Levenson, controlling the AIDS epidemic for all Americans requires not only that people use condoms and clean needles –suggestions that have become commonplace over the last 2 1/2 decades–but also that the disproportional infection rates among African-Americans be understood within the larger context of “the social disintegration of inner-city black America.”
Speaking to the connections between poverty and AIDS at the global level, Greg Behrman’s “The Invisible People” documents the U.S. government’s refusal to create foreign policy that com-bats AIDS in southern Africa, even though public-health officials and scientists have imagined ways to control the spread of AIDS there. One of the most interesting but ultimately sad stories is that of Jonathan Mann, who headed the World Health Organization’s Global Program on AIDS. In 1986 Mann wrote the document “Global Strategy for the Prevention and Control of AIDS,” in which he argued that disease had to be placed in a larger context than health, an idea that, Behrman writes, “was nothing short of revolutionary.” By 1990, Mann’s ideas had been stymied by bureaucracy. After leaving the Global Program on AIDS, Mann continued to develop broadly conceived policy initiatives, but his death in a plane crash devastated the public-health community. Even though other scientists suggested similar solutions, the political will to create change did not emerge. Behrman concludes that the failure to imagine and enact systematic solutions to the AIDS epidemic was due to “passive racism [that] undergirded U.S. inaction through the pandemic’s flight in the 1990s and beyond.”
Behrman’s story of indifference at best and racism at worst is certainly compelling, but in focusing all his attention on inaction he misses an opportunity to talk about the work being done by non-governmental organizations. For example, Partners in Health (PIH), based in Cambridge, Mass., has undertaken structural solutions to the AIDS epidemic in places as varied as Haiti and Russia. With a drug-distribution program for people living in rural Haiti, PIH also works to alleviate the profound poverty in the Western hemisphere’s poorest country. While these sorts of projects would surely benefit from a massive infusion of government dollars, the work originated by PIH and people like Mindy Fullilove suggests that successful AIDS programs begin on the ground level, rather than from top-down models produced by government agencies.
It is in terms of content, not form, that it is valuable to consider Paula Peterson’s short-story anthology, “Women in the Grove,” in relation to the books by Levenson and Behrman. Each story describes the life of a woman affected by HIV/AIDS and reminds us that AIDS is always more than a disease.
In “Song of Camille,” Peterson, a Chicago-area author who is HIV-positive, introduces us to the title character, an African-American woman and recovering intravenous drug user who has been diagnosed with HIV along with her 7-year-old daughter. We learn that Camille struggles to keep her job, maintain her sobriety and care for her family in a world that does not always support her endeavors. While this is not the tale of a woman who is victimized by a callous system, Camille lacks the kind of knowledge and power that would allow her to fully negotiate the system in hopes of building a better life.
Instead of telling her boss about her HIV status and how it prevents her from working, Camille talks to her supervisor only after losing her job, and it is too late to get rehired. Camille also decides to end her relationship with her white therapist, who she feels refuses to understand her complicated situation. In doing so, Camille cuts herself off from a person helping her build coping skills for living with AIDS. For Camille to live with HIV/AIDS, she not only requires access to drug therapy, she also needs a job and child-care, as well as mental-health services. Peterson’s refusal to provide easy solutions to complicated problems makes her book a useful tool for humanizing the AIDS epidemic in America, and suggests that for a person to be healthy requires more than the absence of disease.
Each of these authors has taken up the task of challenging our understanding of the AIDS epidemic by focusing on the relationships among poverty, racism and disease. Reading the texts together suggests that much can be gained from considering the global AIDS pandemic in tandem with the reality of AIDS in America. While Levenson ultimately makes a more convincing and nuanced argument than Behrman, both books, as well as Peterson’s short stories, make for important reading for people interested in gaining insight into AIDS in the 21st Century.
Three recently published books help us understand why there is such a profound disconnect between our understanding of AIDS and our ability to combat the epidemic.
