Why did you decide to focus on HIV-positive Latina women in Newark, New Jersey for your book?
Over the course of several years, I learned a great deal about the daily challenges of HIV-positive Puerto Rican women in Newark 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.
Your book revolves around response to “structural violence.” What does that term mean?
In the words of Paul Farmer, American anthropologist and physician, structural violence can be thought of as hardships that result from historical and economic events and processes that together constrain individual choices. For example, when poor families attempt to raise their children in crumbling neighborhoods with few grocery stores and struggling schools, they are constrained by structural violence. The challenges they face are beyond any one person’s control. It is impossible for them to point to any single individual, or even any specific group, and say, “You are responsible.’” One of the worst things about structural violence, in my opinion, is that since no one person or group can be blamed, no one person or group can fix the problem. It’s exceedingly difficult to stop structural violence, because responsibility for the damage it causes is diffused throughout an entire cultural system.
What was the determining factor for those women who, despite facing structural violence, successfully navigated a system they couldn’t change?
For a long time I was puzzled by this question. How was it that some impoverished HIV-positive minority women were able to marshal their inner and outer resources enough to thrive under such difficult conditions, while others barely survived? The key concepts that helped me to explain how Newark’s resourceful women survived are cultural capital, social capital and habitus. Cultural capital refers to the class-specific knowledge, values, preferences and skills that dominate the social environment, or habitus, in which individuals are raised. Social capital refers to the body of potential resources that can emerge from relationships of trust. Although all of the women I worked with were raised in a marginal or working-class habitus, some had also been exposed to other ways of seeing and knowing the world through education, institutionalization, and recovery programs. These women absorbed some of the cultural capital of groups other than their own and built alliances with ease with clinicians, social workers and other professionals. People of all backgrounds wanted to help them, so they got better advice, better support, and better care than other, less flexible, women who actually needed it more. My book’s most important goal is to teach my readers how to harness the tools that Newark’s most resourceful women used to survive every day. Along the way, I also hope to help change our healthcare system, making it more hospitable to all those who depend on it for life.
You accompanied the women to their healthcare appointments. What was the most important lesson you learned? About them? About healthcare disparities?
The most important lesson I learned is that even the most disadvantaged and oppressed persons have the potential to advocate for themselves and others. They may not be able to change the structural violence that they face, nor is there any guarantee that their efforts will ensure their survival — but they can retain their own agency, their own dignity and some of their own power. They don’t have access to the same benefits that middle and upper class individuals do, and we shouldn’t expect impoverished people to solve all their own problems by themselves. But I believe that it does mean that a human being’s agency — an individual’s ability to make real, empowering choices for him or herself — is very difficult to strip away completely. That gives me hope for every one of us. The most important lesson I learned about healthcare disparities is this: they are rooted in very subtle and hard-to-pin-down processes. Clinicians of all kinds will consciously work to give the very best care to everyone with whom they work. They will do their best. But offering great care means developing the kind of flexibility that allows a physician to cross partly into the world of each patient, and that is not an easy thing to do. It is a skill that can probably be developed over time, with guidance and practice, but I believe that it must identified as a skill as well as encouraged and supported. My central question for academic institutions is this: how are our universities and medical schools working to develop this kind of flexibility in their own graduates? And what can we do to help all of our institutions learn how to do this better?