A Brief History

About Surviving HIV/AIDS in the Inner City

Several years ago, I was a graduate student in the Department of Anthropology at Rutgers, the State University of New Jersey. Public awareness of HIV/AIDS was near its peak, and the pandemic was devastating the urban areas of my state. Still, I lived my life almost completely unaware of what was happening. I had spent the last few years doing archaeological fieldwork in Belize, Central America, excavating a Mayan house group near the ancient city of Xunantunich.

But as much as I loved archaeology, I felt that it wasn’t what I was supposed to be doing. I knew that even if I finished my research, almost no one would benefit from it. A handful of people might read my dissertation, but the world would not be a better place because of what I had done. It wouldn’t really make a difference to anyone. And this made it hard for me to stay focused on my work.

Six months later, I made a radical change. While joining a friend at a Bryn Mawr film festival, I stumbled onto a documentary about women living with HIV/AIDS. The film was called The Heart of the Matter, and it had been made by Amber Hollibaugh, the head of the Lesbian AIDS Project at Gay Men’s Health Crisis (GMHC). I was puzzled. I didn’t know that lesbians could get AIDS, nor had I ever really thought about the threat it posed to women. At the end of the film, a list of questions that remained unanswered about HIV/AIDS and its impact on women rolled across the screen.

For the first time in years, I was electrified---why couldn’t I help answer some of these questions?

Several years later I was spending almost every weekday on the streets of Newark, NJ, following one woman after another to her many health care appointments. I sat with women in infectious disease (ID) clinic exam rooms as they met with their doctors. I went with them to the offices of counselors, psychologists, acupuncturists, and specialty clinics of all kinds. I also joined them in day-to-day activities like taking care of their children, visiting social service agencies and grocery shopping.

Over the course of several years, I learned a great deal about the daily challenges of HIV+ Puerto Rican women struggling to take care of themselves and their families. Surviving HIV/AIDS in the Inner City is the story of what these women taught me. It collects their most important wisdom and records their strength and resilience. It also explains why some women survived and even thrived under the terrible conditions in which they lived, while others gave up and died. Surviving HIV/AIDS is an analysis of the fractures that run throughout our urban health care system and a window into the lives of those who must learn to work it or die.

Today, this book is taking me on a new journey. Since its publication, I’ve been privileged to talk about what I’ve learned in classrooms, clinics and interviews. As a speaker, I travel around the country helping people understand the impact of poverty and structural violence on chronically ill urban women of color. I also help them see the paradox inherent in the lives of so many inner city residents: while the terrible conditions that constrain them are immensely powerful, they do not rob these women and men of all their agency. They are neither free nor completely bound, but can instead teach us about making the best possible use of what freedom they have.