Out of the Silence
GW psychologists Lisa Bowleg and Lillian Comas-Díaz and epidemiologist Mary Ellsberg examine through a prism of empathy HIV and AIDS in African American communities, violence against women and girls, and the mental health of those living after trauma.
Illustrations by Delphine Lee
For three GW researchers, before there is scholarship or science, there are people’s stories.
Psychologists Lisa Bowleg and Lillian Comas-Díaz and epidemiologist Mary Ellsberg have spent their careers talking to those ignored by society and its institutions.
Bowleg—who founded GW’s Intersectionality Training Institute and is a director at the District of Columbia’s Center for AIDS Research—has spent 20 years conducting research in diverse Black communities. She uses intersectionality to create a complete and unblurred picture of how HIV and AIDS affect the people who live there, applying what she learns to improve public policy.
Ellsberg, the founding director of GW’s Global Women’s Institute, has conducted 30 years of research on violence against women in countries around the world, including Nicaragua and South Sudan. In particular, she has studied intimate-partner violence and the forces that lead to increases of violence in the home—for example, armed conflict or displacement—as well as decreases in partner and nonpartner violence. Her 1996 study spotlighting the prevalence of intimate partner violence in León, Nicaragua, helped a women’s movement there bring about countrywide legislative reforms and better social and law enforcement services to protect women from abuse.
Comas-Díaz has been a clinical psychologist since 1979, specializing in treating women and girls who have experienced trauma and those who, like herself, come from a transnational background. The daughter of Puerto Rican immigrants, she’s been the executive director of D.C.’s Transcultural Mental Health Institute since 1986 and last year oversaw the American Psychological Association’s revision of its guidelines for treating women and girls. The focus of the 2019 edition is heart and inclusivity.
Beyond the science and statistics, the theses and disquisitions in scholarly journals, there are humans. For Comas-Díaz, Ellsberg and Bowleg, their work is predicated on and furthered by those who choose to speak.
A lot of these people—the women of Nicaragua, the marginalized African Americans with HIV or AIDS, the women and girls who confide in Comas-Díaz about whatever hurt that won’t seem to age away—hadn’t spoken about their lives, at least those quiet parts. That’s because until these three researchers, no one had ever really asked.
Here, Bowleg, Ellsberg and Comas-Díaz, through a Q&A, an as-told-to and a narrative, talk about what that’s like.
Q&A: Lisa Bowleg and Intersectionality
How does intersectionality help us understand people?
Bowleg: Intersectionality is a really important analytical tool for showing how power and social inequality are differently structured depending on the intersections you occupy. We get to see this in terms of policy, because if you can’t see certain groups or certain intersections, then you also can’t develop policy solutions for them. In my work, one of the arguments that I make is that an intersectional view has the potential to show us how we can be most effective in terms of interventions because, typically, we perceive groups as monolithic. We’re going to have an HIV-prevention intervention for Black men? Well, which Black men? There are some really important intersections within there. They’re not a homogenous group. They’re Black gay and bisexual men. They’re Black gay and bisexual men who have more money. They’re Black gay and bisexual men who have less money. They’re poor heterosexual men. They’re Black men with physical or mental disabilities. Intersectionality allows you to really focus in.
You came of age during the 1980s HIV/AIDs epidemic. Did that affect you and why you study what you study?
I remember my favorite aunt when I was growing up—this is my mother’s youngest sister. I was already in college, and there was this woman [my aunt] that I just idolized, and turns out, while I was in college, she got hooked on crack cocaine and then contracted HIV, and she died. That’s the personal part of it.
HIV was identified in 1981. I started working about six, seven years later, after graduation, and I am there when the definition of AIDS does not include the ways that HIV manifests in women. There are different gynecological manifestations of HIV, for example, and so the implications of this for women are real because you can’t get an AIDS diagnosis because you don’t meet the threshold of what it means to have AIDS. Then it means that you can’t get your Social Security disability benefits, SSDI, and all of that.
That’s intersectionality right there: Who’s missing because we’re defining this condition by how it manifests in men?
When you started working on this, how much research had been done specifically in your niche?
In terms of Black heterosexual men, there was this review of the literature in 1999 that said that research on this group was virtually nonexistent, and that’s pretty much where I came in. There were very few studies because HIV, initially, we thought it was a white gay man’s disease. Then in terms of Black people—my god, HIV just spread like wildfire in Black communities, particularly urban poor communities, but particularly Black gay and bisexual men.
In the last two years or so, you had the Centers for Disease Control and Prevention saying that if current trends continue, one in two Black gay and bisexual men will contract HIV in their lifetime—one in two. And that’s still the case. Given those statistics, it makes sense why the bulk of HIV prevention research has focused on Black gay and bisexual men.
However, I wanted to focus my research on another group of Black men who are rarely the focus of HIV prevention research: Black heterosexual men. We know that HIV is most efficiently transmitted from men to women during heterosexual sex and that Black women have the highest rates of HIV/AIDS among women in the U.S. But yet, there have been few HIV prevention studies or interventions focused on Black heterosexual men because of the mistaken-and-scapegoating belief that in the context of HIV, every man who has sex with women must be gay or bisexual. When you think this through for a minute, it doesn’t make much sense. Thus, it was my initial interest in trying to understand the things that increased HIV risk for Black women, that led me to try and understand the things that increased risk for Black heterosexual men.
And again, because I come out of a public policy background and also a feminist studies background, I’m always interested in structure. So, what does structure tell me about Black men’s health in general? That’s where I decided to concentrate.
You talk to Black men for five minutes, and very quickly you’re learning about unemployment. You’re learning about unemployment due to incarceration, and guys are telling me things like, “Yeah, you know, I did this crime 14 years ago and I still can’t get a job.” And discrimination and police violence—all of that is coming up in my research on HIV prevention. That’s when I started to realize that this singular individualistic perspective that I learned in psychology is very limited for understanding the larger context that increases HIV risk in Black communities in the U.S., particularly Black communities that are poor.
What have you brought to light that wasn’t known before?
That we can see a link between men who have experienced more racial discrimination or racial trauma and sexual risk. And you think: What do those two things have to do with each other? What they have to do with each other is, one, HIV is already concentrated in poor Black communities at high rates. Your probability for risk is higher, but then there’s racial discrimination—it wears you down and constrains your ability to engage in safer sex behaviors, whether it’s through depression or whether it’s because of substance use. We’ve seen in our research that that can be one of the pathways: People broken down by racial discrimination are much more likely to use substances.
We’re not sure but we theorize that because the substance use can be a way of coping, that’s sort of the pathway to sexual risk. Increasingly, I’ve also been looking at, not just at sexual risk, but at other mental health factors.
We just published a paper from my research in the American Journal of Public Health, and one of the things we did in that research that I think is pretty groundbreaking was show how men who have histories of incarceration showed higher rates of depression, and they were more likely to avoid police. It was that police avoidance and the pathway there was through depression, and our regression model showed that. We theorized that when you’re having to avoid the police, you’re cutting off access to the same resources that give you support. So now a lot of my work is morphing into police brutality and police avoidance and what we’re calling the police brutality continuum. Again, that’s a structural context that shapes Black men’s health.
What are people’s reactions when researchers ask them about their lives?
I was really interested in interviewing Black men and Black women, and I remember doing the interviews in the [GW] psychology department, and this guy says to me: “I’m a dressed-up garbage can.” And I said, “A dressed-up garbage can? I don’t know what you mean. Tell me what that is.” And he goes on to tell me about this addiction he had to—I think it was crack. He just takes me on this journey about what it means that you can sort of clean up to get yourself to an interview and that you can hold down a job, but you’ve got this addiction. It was then I realized how important it was to be able to realize I am not the expert. I have the training, I have the credentials, but I’m not the expert of his life—but he has information that I can use, and if I’m lucky, to develop programs and interventions and advance understanding to improve the lives of men and people like him. And that’s when I realized oh, OK: This was my purpose.
Every study we have done, without exception, particularly in the qualitative part, we find men saying, “Y’all have any more opportunities to participate? I’ve never talked to anybody about this. Nobody’s ever asked me about this.” Or if we’ve done focus groups, they are just hungry to talk to other Black men about this. … It’s so important for people to tell their stories and feel validated, not be judged. It’s a privilege for us. It’s really a privilege for us to hold that space for people.
I don’t bring judgment to my participants. I really try to understand, again, from their vantage point and see how I can use that knowledge to develop programs for them. But it’s all from their point of view, not the sort of top-down theories developed by white, middle-class men in ivory towers who were not thinking about this group. They weren’t thinking about poor Black men with histories of substance use, for example. I see it as sacred work.
The Intersectionality Toolkit Project
Lisa Bowleg says policymakers often emphasize single-axis positions of race or gender and ignore how power and inequality based on interlocking demographics such as race, gender, socioeconomic status, sexual minority status intersect to influence the health and well-being of women, children and families. With a grant from the W.K. Kellogg Foundation, Bowleg developed an intersectionality toolkit that includes an intersectionality checklist, case studies and an implementation guide for policymakers and organizations that develop programs and policies—especially maternal and child health policies—for diverse women and families.
Learn more at teamrepresent.columbian.gwu.edu.
AS TOLD TO: Mary Ellsberg and the Compassionate Interview
“We say every woman gets a chance to tell her story,” epidemiologist Mary Ellsberg says of her interviewing women and girls about intimate-partner violence, “and tell it the way she wants to. If she goes off on a lot of tangents that have nothing to do with the questions you’ve asked her, that doesn’t matter. Your job is to stay there as long as it takes. We didn’t put any pressure on our interviewers to have a certain amount of production, finish a certain amount of interviews. What we told them was that these women, in exchange for sharing these very intimate and painful parts of their lives, they deserve to be listened to and believed. I think that makes a difference.
“We place a huge emphasis on choosing and training the interviewers really well and making sure that they are people who already are empathetic and sensitive to these issues.
“Another really important piece is assuring women, and for them to be able to see that we take their privacy and their confidentiality really seriously. Nobody else is allowed in the room. If anybody else comes in, we stop the interview and we start using dummy questionnaires or asking about other issues. If the person doesn’t go away, we cancel the interview and set it up for another time and then we avoid doing anything that might let others in the family or in the household—even children—know what we’re talking about, so that we’re not putting her at risk. If a father comes home from work, a small child might unwittingly say, ‘Daddy, guess what Mommy was talking about today?’
“So we’ll say to the women in advance, ‘If anybody comes in, we’ll change the subject.’ Women get that right away. They become completely complicit. And if somebody walks in, sometimes they’ll change the subject and start talking about breastfeeding or something else.
“Another thing is the way we ask the questions. We don’t ask women whether they’ve been mistreated or whether their husband has used violence against them. We ask about behaviorally specific acts. This has been proven to be the best way to talk about violence, particularly in a cross-cultural way where maybe a light slap is not considered violence.
“There’s also the effect the interviews have on the interviewers, who are largely local women. We learned very early that we had to take really good care of them. Because if we were in a place where 50 percent of women have been abused, at least 50 percent of your interviewers will have been through this as well. We had weekly debriefing sessions where we would talk about the interviewers’ experiences. There were always a lot of tears.
“Some of the interviewers had really strong reactions to listening to these stories. One of the interviewers seemed very stable and serene, and twice she ended up in the emergency room in the middle of the night thinking she was having a heart attack. Finally, she realized that she was having these panic attacks [because] the interviews had triggered for her an experience, where she at 5 years old had been sexually abused by a man her mother used to work for.
Mary Ellsberg recently published a follow-up study on intimate-partner violence in Nicaragua 20 years after the original study. Conducted in partnership with the Autonomous National University of Nicaragua at León and the Nicaraguan nongovernmental organization InterCambios, Ellsberg’s study found a significant decrease in intimate-partner violence against women—a 60 percent decrease for lifetime physical violence and a 70 percent decrease in physical violence during the 12 months before the interview took place. This first population-level study of violence reduction over 20 years was published in the journal BMJ Global Health.
“People often think of violence as something that will always be with us, that it is inevitable,” Ellsberg says. “But our research shows that this is not true. Violence is actually preventable.”
“He told her not to tell anybody because her mother would lose her job. She went through this for a very long time and never told anybody ever. By now she’s married, has children, and she certainly never told her mother because she didn’t want her to lose her job. The interviews had reminded her of those experiences. That man still lived in the town. She still saw him sometimes, and it started triggering these panic attacks. When she told the story to my research partner, we obviously said to her: ‘You should feel free to stop. You don’t have to keep doing it.’ She wouldn’t stop.
“She said, ‘No, this is really important to me. This is the most important experience ever for me.’ She continued doing the research and she actually stopped having the panic attacks. By the time she told somebody, she had gotten some of the shame and fear out of her system. It became very important for her, and that was true for many of our field workers.
“I think it’s very empowering to realize that you have the opportunity to somehow reframe your story—to rewrite your story, to improve lives for other women. I think that that’s probably the story for many of us as researchers.
“You can just see that it’s taking such a burden off. People will often say that they feel lighter after they’ve talked about this or they feel as though this huge weight has been taken off of them. So there’s a degree to which doing the research itself and asking these questions is already some kind of intervention.
“It’s you reaching out to others and helping them to make sense and meaning out of this horrible experience they had, and there is some research that indicates that that in itself has helped some women leave violent relationships. Part of the process of leaving a violent relationship is recognizing and realizing that the thing that’s been happening to you, that you’ve been justifying, and you’ve been saying, ‘Oh, all men do this,’ or, ‘This is just normal’—it isn’t. It’s terrible and it’s something that you don’t deserve. That recognition is the first step to getting out of violence.
“This is a really meaningful way for people to participate. To feel that telling your story—which is really painful and hard to talk about—is going to help somebody else is really motivating. One of our field workers would say, ‘So maybe it’s too late for us, for you and me, but by talking about this in this research and letting people know what’s going on about women or happening to women, maybe things will be better for our daughters and our granddaughters.’”
GenderPro Capacity Building & Credentialing Program
Hosted at GW in partnership with UNICEF, GenderPro is a first-of-its-kind course designed to educate international development professionals on the skills and knowledge they need to integrate gender into existing programs, and the best approaches to improve the lives of women and girls.
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Learn more at genderpro.gwu.edu.
NARRATIVE: Lillian Comas-Díaz and the Psychology of Empathy
Last year, the American Psychological Association released its updated guidelines for treating women
and girls. Lillian Comas-Díaz—a psychologist with 40 years of experience and a clinical professor of psychiatry and behavioral sciences at GW’s School of Medicine & Health Sciences—co-chaired with two others the committee responsible for the revision. The APA emends the guidelines every 10 years, accounting for advances in scholarship and the always drifting quiddities of culture.
The new version, released in May 2019, of these APA guidelines is undergirded by individuality and empathy. Previous iterations were perhaps overly clinical. They mentioned little of groups like transgendered women, immigrants and veterans. This iteration accounts for everyone, complementing a robust focus on the person, their identity, their circumstances and, more than anything, their strengths and resilience—their human quintessence—over their condition or disease.
“What’s really part of the old orientation,” Comas-Díaz says, “was looking at the defective and the unhealthy as opposed to saying, ‘This thing happened to you. You’re suffering from this. Let’s take a look at how have you dealt with this before. Do you have someone in your family or in your close network who has coped with this? How have they done it?’ We’re helping them empower themselves. It’s a different paradigm. It used to be: This is a deficit. But now it’s, we’re looking at the positive without forgetting the suffering and the adversity.”
The introduction to the just-revised guidelines is hard reading. For six pages, the authors summarize how so many people—so many of them men—fail women and girls.
The statistics are stark: One 2013 study estimated that 90 percent of women would experience some form of sexual violence in their lives. About one in five women will be raped, and one in four college women will be sexually assaulted.
It says females are more likely to experience sexual abuse as children, which increases the odds of later-life anxiety, depression, dissociation, PTSD and personality disorders. Suicide is oft-mentioned as an outcome.
Comas-Díaz, who’s had a private practice in Washington, D.C., since 1986, got picked to oversee the APA’s new guidelines because of her long background helping women and girls through trauma.
Considering trauma and the pain and caprice it causes, Comas-Díaz says, is foundational to the new guidelines. They abandon stodgy thinking for progressive person-centered philosophies of intersectionality and inclusivity.
“You have to be able to acknowledge the compassion, the empathy, the cultural humanity,” says Comas-Díaz, who’s done a stint as the director of the APA’s Office of Ethnic Minority Affairs. “That’s important when you’re working with women and girls, particularly because there’s just a significant amount of abuse among women, some groups more than others, but you know, to be a woman, it’s tough in this kind of society.”
She means a patriarchal one.
Comas-Díaz’s parents came to America as part of the Great Puerto Rican Migration in the mid-20th century. She spent her childhood between America and its island protectorate and had surgery at age 4 to correct a cleft palate. She also stuttered until she was 16. These were formative experiences. They linger.
“Reality is very different in Latin America than it is here,” Comas-Díaz says. “So coming back here and dealing with a lot of racism and dealing with a lot of xenophobia and dealing with a lot of sexism—I’m not saying those things don’t exist in Latin America. They do in the Caribbean, but in terms of sexism, let me just talk about Puerto Rico. There, it’s only in terms of you’re inferior or what have you, but it doesn’t immediately relate to someone being stupid like it does here in the United States.
“... Also, being in a third-world, colonized country, I became very aware of politics and how politics influences our lives and our way of being. When I came here, I became aware that a lot of us—we’re in the same boat, that we have to become supportive of each other and in solidarity with all the people who founded the [Office of Ethnic Minority Affairs] at the APA—and now it’s one of the biggest divisions, by the way. … What I’m saying is that my transcultural experiences and being exposed to racism and sexism and also my speech situation alerted me to a lot of things early on in my life, so I became more able to listen a lot because I couldn’t speak that well, and that really gave me a lot of insight.”
Over time, and certainly in the past 10 years, the APA, Comas-Díaz says, has moved from old pedantries, largely because there are more voices in psychology. She describes it as abolishing some of the Western “cultural imperialism” that has historically characterized the field, leading to that afore-discarded clinical focus that could remove the person from the condition. Examples of this include the abolition of victim blaming and treating a patient as the sum of their identities, not just their trauma.
Comas-Díaz even invoked the history of victorious armies taking women and girls as spoils to point out that vestiges of this mindset persist. Just look at the pall of statistics over the APA’s introduction to the new guidelines.
“We’re in the process of saying: This is what we value,” Comas-Díaz says. “We value diversity, but we also have to connect with our commonalities and respect our differences and actually try to see if we can enrich ourselves as a discipline and as people by doing both things. This is something that psychology is struggling with, but I think there has been an evolution. The concept of microaggression, particularly racial microaggression, is becoming part of our regular language—our public language now—and that’s something that came from psychology and from psychiatry.
“We’re dealing with people, whether it’s in research, whether it’s in education, whether it’s clinical—we’re dealing with the mind, body, and if I may say, spirit of people, and that’s a high order.”
The American Psychological Association’s 2019 Guidelines for Treating Women and Girls
1. Recognize and cultivate strength and resilience.
2. Recognize that identities have multiple contexts.
3. Recognize and understand discrimination and oppression.
4. Use affirmative approaches and be gender appropriate and culturally relevant.
5. Psychologists should practice introspection about their beliefs on gender and identities.
6. Promote agency and critical consciousness.
7. Diagnose only when necessary and understand past biases in diagnoses.
8. Be aware of sociopolitical and geopolitical contexts.
9. Be knowledgeable about mental health education and resources, including alternative methods.
10. Work to make environments and institutions less hostile toward women and girls’ mental health.
Learn more at apa.org/about/policy/psychological-practice-girls-women.pdf.