Published in 2019, Remaking a Life: How Women Living With HIV/AIDS Confront Inequality is an examination of the decades-long transformation of the AIDS epidemic told through the voices of over 200 female AIDS activists, policy officials, advocates, and women living with HIV/AIDS who’ve been on the front lines of this fight. The author, Celeste Watkins-Hayes, Ph.D., is professor of sociology and African American studies at Northwestern University, as well as a faculty fellow at Northwestern’s Institute for Policy Research. In addition to her academic articles and essays, Watkins-Hayes has published pieces in The Atlantic, Chicago magazine, and The New York Times. She’s recently been tapped to be a plenary keynote speaker for the 2020 International AIDS Conference.
Terri Wilder: So, before we get into the details of the book, can you talk about how you came up with the idea for the book?
Celeste Watkins-Hayes: When I was a graduate student at Harvard University, I was working on a study of women who were trying to transition off of the welfare system at the time. People were very focused on TANF (Temporary Assistance for Needy Families). So I was working on a study that was looking at the economic lives of low-income women. Some of them were on TANF, and some of them were not, because my research centers around the intersection of inequality, public policy, and institutions, with a particular focus on issues around race, class, gender, and sexuality. One of the women that I interviewed was also living with HIV. And I was intrigued by how her support system was very different from the other women with whom I was speaking. It was economically diverse. It was racially diverse. It was a community in which she found all kinds of emotional support, but also access to critical information that was helping her economic survival.
And when I asked her about this community in this network, she talked about going to organizations focused on people living with HIV. And at that time, the seed was planted for me. And a couple of years later, when I moved to Chicago, I launched a study on women living with HIV. And the original plan was to focus on 30 women and to interview them about their lives—so, to talk to them about their social support systems, and their economic survival strategies, and their ways of thinking about navigating the world as women living with HIV. And the project expanded in a significant way when I began to hear from the women and began to appreciate the role that the HIV safety net was playing in their lives. So the study grew from there. And it is linked back to that original story of the woman in Boston who I interviewed who told me the exact same thing about the significance of the HIV community.
TW: So how were you able to locate the women that you interviewed? Can you tell me a little bit more about your research process?
CWH: I am a qualitative interviewer; I’m an ethnographer. So for me, I believe that it is critically important to have a relationship with the community before we begin the research process. So that’s important for several reasons. I am not one who thinks that research should extract information—there should be an exchange back and forth. Some of my research questions get formulated with the community while I’m in conversation with people and trying to understand, what do people want to know, and what do people think is important to know.
So, I began a relationship with Test Positive Aware Network (TPAN), which produces Positively Aware magazine, as you know, and began to connect with staff members there and began kind of learning about the community, and they were able to introduce me to women who were living with HIV and using the services at TPAN, and then expanded from there.
So, sometimes women would recommend me or refer me to other women they knew who might be interested. And then, in order to make sure that we had a diversity of women—meaning we wanted to talk to women who were very connected to the HIV community, and then we wanted to talk to women who are not as connected to the HIV community—we also advertised to physicians and other health care providers. We put fliers around town in the Chicago area; we had notices on public transportation. And from there, it grew and grew, and we ended up talking to over 100 women in the city of Chicago who are living with HIV.
TW: Storytelling is so important in HIV, and your book is beautifully written. I really felt like I knew the women and could literally see them from the details you provided in what was happening in their lives. You start the book by telling the story of Dawn Stevens, who was diagnosed with HIV in 1985. You share that she was sexually abused, starting at a young age, lived in areas with high poverty and drugs, that she ended up using drugs and engaging in sex work to survive, and living on the street. And I was just curious as to why you decided to start the book with her story?
CWH: The opening statement of the book where Dawn says, “If it weren’t for HIV, I’d probably be dead,” really signals the puzzle that is the center of the book. What she’s really saying is, if it weren’t for the HIV community, I’d probably be dead. If it weren’t for the support system, I’d probably be dead. If it weren’t for the Ryan White Care Act, I’d probably be dead. So I thought it was really important for readers to be able to follow one person’s journey from beginning to end to be able to understand the layers of inequality with which she had to grapple. And then the layers of support that she was able to get access to. And I wanted to tell all of that with nuance and complexity. And I wanted to basically trace this process that I call “dying from to living with to thriving despite.”
But what I really wanted to show is that they were dying from a whole host of things. They were dying from stigma. Dawn was dying from the afterlife of the childhood sexual trauma that she experienced. She was dying from addiction and the way she was using that to self-medicate. She was dying from poverty. She was dying from a whole host of things. So what I really wanted to also do is to use that story as a way in for us to have a broader conversation around what I call the injuries of inequality—those wounds to our bodies that are not evenly distributed across our population, that disproportionately happens to those who are racially and economically marginalized, to those of us who are women—cisgender and transgender.
And, you know, to your point about the way that it was written, I really did want people to end the book and say, “I wonder where Dawn is now.” And I love documentary films. And one of the things I love about them is that a good film, through its storytelling, makes you wonder, “Where’s that person now?” at the end of the film, and it, in fact, makes you care and makes you invested. So I really wanted to make sure that people were not just participants in the study where people could put the book down and forget about respondent number 28, who shared this particular quote. I wanted the book to sit with people and to live with people as they thought about, there is someone walking around who has had that experience, and what is our reaction to that? What is our response to that? What are we prepared to do about that? Because I think it makes it harder for people to look away when they have that point of connection.
TW: So I want to talk a little bit more about the viewpoint of dying from HIV/AIDS to thriving despite it, because it reminds me of a workshop that I used to run in Atlanta, Georgia. When I was hired at AIDS Survival Project, the workshop when I first started working there was called Operation Survive, because it was created during a time when the United States was involved in Operation Desert Storm. And you might remember that, you know, people love to use war analogies with HIV. And so the name of the workshop was later changed to Thrive Weekend, because the collective volunteers that worked to bring the workshop to the community realized that by 1998, people with HIV weren’t just merely surviving with HIV, but have the opportunity to thrive, really due to the protease inhibitors that had become available. As I was reading the book, I couldn’t help but think about that time—it was a very pivotal time point. And I’m just wondering, do you think with the advent of these medications becoming available, was that the pivotal time for the women to kind of switch from, you know, surviving to thriving, or do you think it was something else that allowed them to go from surviving to thriving?
CWH: I think there was a number of things. I think, certainly, the medications helped tremendously. But the other thing that I think is also important is the advent and the creation of a very robust social safety net for women living with HIV. And the reason I think that’s important is because as we understand women’s experiences, and all of the different things that they’re trying to navigate—whether they happen to also be mothers and have to think about that dynamic, whether they are struggling at the bottom of the labor market, whether they are disproportionately exposed to sexual violence, you know, all of those different things—there had to also be something beyond the medications to be able to respond to those issues. So one of the things that became very, very clear is that the prescription is not enough, right? Particularly if we’re thinking about HIV as an injury of inequality.
So the safety net was offering three things. Number one, the tangible resources—it’s providing access to health care and providing access to economic assistance, which may be government assistance, it may be employment somewhere in the HIV safety net, it could be a whole host of things. The second thing that the safety net is providing is this very, very robust social support system. So the idea of centering peer voices, the experiences of people who are living with HIV, who are understood to be not recipients of services, but contributors to the solution around HIV, and contributors around the solution to some of the other issues around inequalities that we’re grappling with, I think, was absolutely transformative.
And then the third thing that the safety net does, did, and continues to do very effectively is that it provides an on-ramp to political and civic engagement. So it gives women an opportunity and creates a structure where if they want to do speaking engagements, if they want to lead support groups, if they want to become involved in policy conversations, there’s a way to do that. And that’s something you can’t take for granted, because for many of us, it’s not abundantly clear how you get involved—if, in fact, you want to get involved. A lot of us have networks and capital that allow us to do that. But the HIV safety net kind of creates that infrastructure for people who want to do that. So when you look at kind of the increased activism among women, part of it was because there were organizations that were training women how to do that—not only how to talk in policy conversations, but also how to move into the organizations that were dominated by men, and to claim the space and to talk about the dynamic that was happening in terms of women sometimes being silenced in these conversations. So those three things together, I think, are also really pivotal as we think about the movement from dying from to living with and to thriving despite, and kind of how that was made possible.
TW: In your book, you write, “Our societal safety net has been perversely shaped to intervene only when people are already deeply injured or assumed to pose a threat to public health; even, say, rather than playing a preventative role, in so far as the determining factor allowing women to access the social safety net, the fire has to be raging before we install the fire extinguisher.” And, you know, as I read that, I was like, why can’t our society understand prevention? It seems to be one of the biggest things that, you know, most notably, elected officials don’t seem to understand that investing in can prevent things from happening in the future.
CWH: And it’s so interesting because we’re seeing it play out in the current discussion around COVID-19 as well, this reluctance to think about, how do you create a safety net? How do you make sure that we’re thinking about prevention, and particularly as we’re seeing some of the disparities in terms of the mortality rates? For COVID-19, part of it is the lack of preventative care and the kind of comorbidities that are affecting people. I think part of why that happens is that politics has become a very “of the moment” game.
I think that there doesn’t seem to be a willingness to think about the long-term health of the country. There may be thought about the long-term health of my family, people who look like me, my constituents, in terms of how can we get access to as much as we can, so that we’ll have as much as we can for the future. I think that unfortunately is dominating our conversation. But it’s not in terms of how can we think about the future, in a collective way. But in a how can we make sure that the country—how can we make sure that the world—is moving in a way in which we’re all thriving? So I think that as a result, we have a very kind of “of the moment” politics. And what that means is that it’s very hard to convince people that prevention matters, because you don’t see the immediate gratification and return.
And what that means is that when the crisis happens, we’re installing the fire extinguisher while the fire is already raging. I also think that we have a real challenge in this country around notions of “deserving,” and it has been part of the country since its inception. If you look at our early creation of poverty relief, for example, all the way back to the 1600s, where we kind of imported the English poor laws to figure out how are we going to respond to the needs of low-income folks and the poor, it was always marked by this conversation around who is deserving and who’s not. And that you can make a moral judgement about who’s deserving and then allocate resources on that basis. And that is part of our DNA. And unfortunately, our belief is we don’t necessarily want to provide preventive services and we especially don’t want to do it for the undeserving—and who gets pegged “undeserving” changes over time. So, obviously, people of color are perennially part of that group.
And, unfortunately, we’re seeing it play out again. For example, just last night, we saw cars lined up heading into food banks. And one of the points that the reporters kept making seamlessly on endless loop was, “These are people that never imagined that they would be in a line to get food at a food bank.” And I think they were trying to drive home the fact that this is affecting us all, but also the subtext of that was that the people who regularly use food banks had always imagined they would be using this and didn’t feel shameful about it. And, in fact, they’re all in economic need, period. Full stop.
TW: Earlier in our conversation, you briefly brought up stigma. And I loved what one of the women in your book said about stigma. “Stigma is like cold air. You can’t see it, but you feel it.” And you know, I’m not sure we’re ever going to be able to end the HIV epidemic. What do you think about that idea that we just are not ever going to be able to kind of really move forward with ending our epidemics or pandemics if we can’t tackle stigma.
CWH: I think it’s really true. And I think that the reason that we’re not gonna be able to do it is because as long as we have stigma as a go-to, it allows us to justify under-resourcing and providing less attention than we should to a particular issue. So if we’re able to say, “Well, you know, it happens to those people,” if we’re able to believe that stigmatizing people and policing and punishing them is some kind of deterrent, it’s always going to prevent us from being able to get to the real issues that will lead to the end of the epidemic. So to the degree that we can talk about it, we can call it out and we can address it. I think it’s really, really important.
So one of the things that will be critical in the ongoing discussion around HIV is how do you address the stigma and how do you address the fact that there’s intersectional stigma, right? So it’s stigma around HIV, but it’s also stigma around sexuality. There’s HIV stigma intertwined with homophobia, and HIV stigma intertwined with racism. And it’s intertwined with classism. So that makes it harder to confront, of course, but it also speaks to the reality of where we are in the epidemic and what it’s gonna take to address it. So I think that any HIV conversation also always has to be mindful of those other vectors through which people get stigmatized. And I think in the concept of intersectional stigmas from Michele Tracy Berger, who wrote this great book called Workable Sisterhood about women living with HIV.
So one of the things that I think help in terms of us dealing with it is for people being willing to come forward and tell their stories, and for people to be humanized, as they tell their stories. So one of the things that the book also tries to highlight is, you know, this great quote from Naina Khanna, the head of the Positive Women’s Network, where she says, stories are political. And when you tell your story, you should also have an ask, right? So don’t have me tell my story just because you are curious and nosy or because you want some kind of voyeuristic experience. You know, if I’m going to tell my story, I also want you to do something about it. And I should be specific about what it is that I want you to do. So to the degree that we’re able to tell the story and connect it to an ask, I think that it’s a really important point.
And as tempting as it might be to think that we can prescribe our way out of the epidemic by just making sure that everybody is on antiretroviral therapy, or to make sure that people who are not living with HIV are on PrEP, that is not going to end the epidemic. We’ve also got to think about the safety net because as you look at women’s stories, you see how important that safety net was. That hopefully diminishes the stigma around using those services. Because when I give talks about Dawn, yes, there is a very stigmatized part of her story in terms of everything that she’s grappling with. And people can get caught in the details of her past. But what I also like to tell about her story is how she became politically active. And what it would mean to the political conversation if we lost the voice of all of the women in the book, the Naina Khannas, the Dawn Stevenses, the Gina Browns, and if they weren’t at the table, because they were so highly stigmatized, they didn’t want to come forward—we would have a very different policy formation. As a result, we would have a different look to the Ryan White Care Act, we would have a different look to treatment, prevention, and we would have a different look to clinical trials. It’s because those women and so many others spoke up to tell their stories that we were able to make some fantastic developments. So my bottom line here is stigma actually hampers our progress in significant ways, because it prevents people who we need to contribute and who have a lot to contribute from coming forward.