Keith Green: Becoming a "Different Kind of Researcher" in Communities of Color
Keith Green had already been working in the HIV field for years -- and had been living with HIV since 1994 -- when he was first interviewed for TheBody.com's African-American HIV/AIDS Resource Center in 2006. Keith's compassion, sense of humor and thoughtful take on many issues have not only been an illuminating addition to TheBody.com. He has also reached many through his outreach work in Chicago and his writings in Test Positive Aware Network's publication Positively Aware_, for which he'd served as associate editor from 2005 to 2009. In 2008, Keith's interest in exploring the intersections between HIV and mental health concerns, particularly in marginalized communities, led him to a graduate program in social work. Now, with master's degree firmly in hand, Keith is helping to change the face of research as a project director for two HIV prevention studies targeting young men of color who have sex with men. I had the pleasure of checking in with Keith again recently about his prior goals, his current path -- and even a few thoughts on relationships. In the weeks since Keith and I spoke, he accepted an exciting new role as director of federal affairs at the AIDS Foundation of Chicago, though he'll continue to be involved in the studies about which he speaks in this interview._
Keith, welcome back to TheBody.com!
Thank you; it's good to be back.
What's new in your life?
Currently, I am the project director for two prevention studies being conducted through Stroger Hospital of Cook County. I'm back in Chicago. I graduated from the University of Wisconsin–Madison, with my master's in social work. I went into that program wanting to get a better understanding of mental health. The funny thing about getting a better understanding of mental health is that oftentimes we only focus on deficits, or on severe, persistent mental health concerns; we don't necessarily focus on it with respect to people's day-to-day mental well-being. For example, I may not meet the criteria for depression, but I could very well be depressed. And those people, I think, fall through the gaps.
Having worked in HIV for a little bit of time, I was beginning to have these ideas, or theories, or hypotheses, about the impact that unaddressed and undiagnosed mental health concerns have on HIV prevalence and incidence, particularly in communities of color. So I went into the program in Madison wanting to get a better understanding of mental health; a better understanding of policy around mental health concerns, and their treatment; and to be clear that I also recognize a population that is oftentimes overlooked in the conversation of mental health.
I did that, and I did it extremely. My field practicum for my master's program was in the State Mental Health Institute, where I worked on two units. One unit was for men who had committed crimes but who had been found not guilty by reason of mental defect. It was a minimum-security unit that was beginning to transition these men back out into their communities. In the other one, I worked with adolescent young men who had been deemed dangerous to themselves, or to others, and were on 72-hour holds, or extended holds, depending on what the situation was, so that further evaluation could be done. I kind of went in headstrong, and really, quite honestly, enjoyed that work. It was very humbling.
There was this guy who had a psychotic break: He ordered services from a call girl, and then he killed her, dismembered her and disposed of her body in a trash bin behind his house. I did not know any of this about this man when I first walked onto the floor and first shook his hand. So, to later find out these things about this man, it dawned on me that that is something that he did. That is something that happened, but he is as worthy of respect and dignity, and of me representing him as a social worker, as anyone else I may encounter.
I came to find out that this guy had suffered severe abuse as an infant, from birth until 2 years old, when he was taken out of his home. Just this unfortunate unfolding of events, but it really humbled me, and challenged me to connect with people on a different level, even now that I've graduated and come back home to Chicago.
I don't think that my focus changed; I think my perspective on how to address the issue changed, or broadened, in that I think that we have to look at more social and structural interventions that validate us as human beings who are worthy of dignity and respect.
Have you come across any HIV prevention interventions that incorporate the kind of approach you're talking about? Do you know of any such programs?
Yes. I don't think we always look at them as HIV prevention interventions, but they are, in fact, HIV prevention interventions. So, for instance, repealing "don't ask, don't tell." Because that, structurally, does not allow for me to be discriminated against. And we know the impact that discrimination and segregation can have on a person's mental well-being, which impacts their risks for HIV, which impacts their risks for not being adherent to medications or not even engaging in antiretroviral therapy at all. So something as big as that, as broad as that, has very large implications.
In your work with prevention studies, were you involved in the iPrEx study at all? What are your thoughts on the study results around pre-exposure prophylaxis [PrEP] and where prevention is headed from here on out?
One of the projects for which I'm project director explores the acceptability and feasibility of pre-exposure prophylaxis among young men who have sex with men [MSM] in Chicago. In that study, we were looking to enroll 99 young men and follow them for six months. We had enrolled 68; then the iPrEx data came out, and enrollment and recruitment into our study were halted. It was felt that it would be unethical to offer a placebo when we have a study such as the iPrEx study demonstrating such strong efficacy for the study drug. Now we're looking to be able to offer our participants who are on no pill, and our participants who are on placebo, an opportunity to roll over into the PrEP arm and be followed for six months. There are some talks about us becoming sort of a sub-study of the iPrEx study.
This has been a huge part of my life for the past couple of weeks, particularly since the iPrEx data were released. I've been very vocal about the need for data that reflect the populations most at risk here in the United States of America. In the iPrEx study there were 2,500 people, approximately. Nine percent of that, or about 250 people, were from two cities in the United States -- San Francisco and Boston. And there were only five young, black men who have sex with men who were a part of that study. Five.
I raised the concern, as we were making the decision to halt and change our study: What do we know about these iPrEx data? Initially, we didn't know much. We knew that there was an overwhelmingly young cohort. More than half of the folks were under the age of 25 years old. My study is being conducted through the Adolescent Trials Network. And part of the justification for this study was that the larger PrEP studies were not including younger people, and not including younger people of color.
Our decision was made before we knew that there were only five black and/or Latino youths in the iPrEx study. We have significantly more African Americans and Latinos currently enrolled in our study than the iPrEx study had altogether. We have some data; we're on a path to find out some things about the acceptability and feasibility of this intervention with the populations most at risk in the United States. We're making these kneejerk reactions to some data that really do not reflect our population.
Subsequently, we did something that really doesn't happen often in research: We hosted a community forum to get community feedback on how we should move forward in light of the iPrEx results. Some of our participants were in the room, as well as stakeholders and general community folks who were interested. They expressed some of their concerns and thoughts. It was resounding: Folks were very clear that resources needed to be provided for us to be able to explore this intervention in the populations most impacted.
We were very clear. We're thinking about the United States, but we're thinking about Chicago, specifically. We will be advocating for those resources to have Chicago included. That information was forwarded on to the funders of our study, and to the Adolescent Trials Network. I'm certain that we will become a sub-study, of some kind, of iPrEx. That was really to allow our participants an opportunity to roll over into that, but not necessarily to open it up to other folks; what we're pushing on is for it to be opened up to more folks in Chicago.
We should know within a couple of weeks. A proposal has been written; it's all being worked out.
More of Keith Green on TheBody.com
HIV & Me: An African American's Guide to Living With HIV (Updated December 2010)
Profiles in Courage: Keith Green (January 2006)
Articles and interviews by Keith Green in Positively Aware (May/June 2004 - Present)
Let's return to you personally: You wrote a piece for the publication Positively Aware back in early 2009, in which you talked about going to school and being outside of the nominal "HIV world," and what that meant as far as talking about your HIV status in a professional capacity. Can you talk a little bit about how you handle disclosure in your work?
Each individual situation requires a different internal dialogue, if you will, about the need to disclose. At that particular moment, I was very unsure about where I was going, in terms of my professional academic career. I didn't know if I wanted to come back to HIV, and I was considering a lot of options.
In some environments, it is not necessarily productive to have that information on the table, because the focus should not be on me, the focus should be on whatever population it is that I am committed to serving at that time. Oftentimes, if the focus is shifted to me, then it's difficult for me to be effective in that environment.
I've learned this holds true in academics and in social work: The focus is not on my HIV status, or on my sexual orientation, necessarily. Though my HIV status and sexual orientation may allow me to be in spaces that some people may not be able to get into, they are just not the focus.
What was your experience in Madison? How was it to spend two years outside of the comfort zone of Chicago, and adjust to a new place?
I don't want the people at the University of Wisconsin–Madison to take this in the wrong way, but it was really like a vacation. It was an escape from the HIV world. Although I still was working some, my focus was totally different. I became a huge college sports fan. It really changed my life, in a very good way.
The experience of college life on that level is something I've always wanted, but I never thought I would be able to experience. When I became HIV positive and dropped out of school, etc., I figured if I ever went back to school, I'd have to work full time and I would not get to experience the campus life. But I was able to do that at Madison.
It was awesome. It was so much fun! I made friends that I probably would not have made otherwise. I went to basketball games. I went to football games. The Badgers are going to the Rose Bowl this year -- that is phenomenal. That is still my escape. College sports are an escape for me. The Madison campus is still an escape for me, because it's two and a half hours away; I can drive up, see my friends, hang out, and get away from Chicago.
Do you feel like your experience at Madison sort of galvanized you to return to Chicago? Was it even a given that you'd go back to Chicago, or did you consider other options? Were you ready and eager to get back to work?
Chicago and I are in a long-term relationship. And no matter how I try to get away, Chicago is like Effie White in Dreamgirls: "And I am telling you I'm not going." And I've become OK with it.
While I was in Madison, I got a call about this position. When I was in Chicago, I had participated in a focus group about how they would develop this PrEP project. After that group, the co-principal investigator, Margo Bell, pulled me to the side, and she said, "If we get this, I want you to be our project director." So around February of the semester of graduation, I got a call from Dr. Bell. She said, "We got it. I cannot imagine anybody other than you in the role. Would you be interested?"
I had to do a lot of soul searching. I was really trying to explore a whole lot of other options and thinking about other things. But I understood what she was saying, and I understood the significance of my being in that position. At the end of the day, I felt like I was called back to do it. So I was like, OK, that is what I'm going to do.
I actually started the gig before graduation. April 1, I started part-time, just helping with protocol development; and then I graduated May 17, and that was a Sunday. May 19 was my first full day at work.
I would like to mention the second project that I work on. It's designed to tailor CDC [U.S. Centers for Disease Control and Prevention]-approved evidence-based interventions known as d-up for the House/Ball community in Chicago. TheBody.com reposted the piece about the House/Ball community that I wrote some time ago, when I was with Positively Aware.
I will be very honest in saying that I really didn't want to have a whole lot to do with it at first. My principal investigators were working on it together, and they asked me if I would consider being the project director for it, in conjunction with the study that I'm working on. They were really not anticipating receiving funding for it the first time they applied. So I figured, well, I've committed two years to this project. If they don't get funded and they try to submit it again, I'll be on my way out, and blah, blah. I was kind of like, it's not going to happen anyway. So, OK, fine.
My reasons for not wanting to be involved had to do with what I'd learned about the politics of how they do research. And when I say they, I'm being very specific with respect to talking about the investigators that I work with, and the people with whom they work. The politics are a little too much for me, and I didn't think that I could work and be my best in this space, if that makes sense.
Well, then it happened. I still was not excited about it; I was still like, whatever. Right? Well, we have our first focus group, with a group of house parents from within the community. And the first question we ask is: How serious is HIV in your community?
One of the house parents said, "It's very serious, when I am going to three or four funerals a month in the Midwest for young men where we know what happened to them, but nobody's talking about it." That broke the ground for a conversation that broke my heart; it caused me to feel bad about my initial reaction to the project itself. Because I immediately saw, or felt, the need for such a project to happen in this community. And I saw the investment of the community -- they realize that something needs to be done, but they don't really know what to do.
What I like about this project is that it's written as _intra_vention rather than an intervention, where you're actually utilizing the community itself to conduct the intervention. So it has become my pride and joy, really, because I enjoy conversing with the community. I enjoy the relationship that I've begun to build with the community.
I see myself becoming this different kind of researcher, which is beautiful for me. Because I have ideals about research and researchers, etc. I understand that, for our community, there's a huge disconnect with the research community. And I now see myself as being able to sort of make a bridge, and I'm very conscious of that relationship and the way that I act inside of that relationship. Because I don't want to do anything that could damage it. I feel like we're building bridges in ways that have not been built before in this city.
For readers who may not know, would you mind describing what the House/Ball community is, the structure of the community, and why you came to think it might actually be a place that's quite conducive to doing this kind of intravention?
The House/Ball community is a very large culture within the black gay and bisexual community; it sort of started in Harlem in the '20s. Basically, the community is organized into houses. Each house is typically named after a huge fashion designer. There's Escada, Prada, all the big names. And the houses have a mother and a father. The houses come together to compete at balls. They compete in performance, aesthetics -- just a variety of different categories.
It's very gender neutral. Everybody is a queen. You are either a butch queen, or a fem queen, depending on your presentation, but everybody's a queen. Your house mother could very well be a butch queen. Gender norms kind of go out the window within this community, in some respects.
The interesting thing for me is that it became a community that was an escape from the oppression of being black, and a black sexual minority. But then the competition is so fierce that it is very status driven; you compete for trophies, cash prizes, etc., and for status within the community. You ultimately want to become a legend or an icon within this community, and you become that by winning certain balls. And certain houses have certain reputations for developing legends, and so you want to be in this house versus that house. It's very, very competitive.
HIV is still very much stigmatized within this community, because it is so materialistic and status focused. A positive HIV status is like, ich. You know what I mean? But it's filled with young men who have sex with men. And there is a high prevalence of HIV within that community -- probably more so than within another type of MSM population, and arguably sort of driving the numbers among MSM.
Do you think the HIV stigma in this community may be driving the HIV prevalence numbers among MSM because of the status-based aspect of the House/Ball culture, where anything that you disclose that could ruin your competitive chances is a no-no?
Absolutely. You're not going to disclose it. You don't want anybody to know. If you know, you're probably not going to take meds. A lot of folks don't know and don't want to know, because it means that you have to do something. So there's a higher community viral load.
The things that you may have to do for status, the things you may have to do to get into somebody's house that has a lot of status, and the things you have to do to compete at balls, these may also put you at risk. In this community, fashion is very important. Whatever the category is, you have to bring it in the latest 2010, 2011 fashions by certain designers. That stuff costs money, and people are doing very risky things to get these fashions.
Are you finding, in the early stages of being part of this project, that there's buy-in and participation from house mothers and house fathers?
Yeah. The amazing thing is that we walked into a very great setup. Because there is a house parents' alliance, if you will, that is at the surface of addressing a lot of different issues within their community. I've even begun work outside of this project, where house parents have asked me to come and have a conversation with their house kids about stigma. They are beginning to incorporate messaging into balls and things like that already. So we're already influential in that way -- where they are hungry for it, but didn't know how or what to ask for, prior to now.
It sounds as if you've jumped into this project with both feet, and there's a lot of potential to do, and be part of, really amazing work in this community. I'm glad that you and this work found each other.
Yeah, it's really good stuff.
Switching gears: Are you in a romantic relationship right now? How has that been?
Yes, I'm in a relationship. It is very good. I am enjoying it. I'm enjoying getting to know him, and looking forward to continuing to get to know him for years to come. We have a lot of fun together.
Do you have any advice, for HIV-positive folks in particular, who want to get out there and open themselves to the possibility of a relationship, or the possibility of dating?
I would say to keep it real. And keep it real from the very beginning. Because, at the end of the day, if you are going to be rejected by a person, you're going to be rejected. You either like who I am, you're either OK with my status, or you're not. It feels much better to be rejected by somebody I really don't know than it does to be rejected by somebody I have invested some time in. So if you're not completely real in the beginning, and then this other you comes out, and they reject you because of that other you that they don't like, that really is your fault.
I have really gotten to a place where I put all of my shit out there. There's a whole lot of other shit that comes along with me, where my HIV status is the least of our worries. Because that's just a small part of me, which I have in control. That's the least of our worries. I am flighty sometimes; I have a lot going on in my life; I keep a lot of big ideas in my head, and I might start working them and massaging them out slowly. I can be very busy and very distant at times. Those are the things that I have to put out in the beginning, with respect to my relationships, to just really be upfront with people about the kind of person I am.
Well, on that note, we can bring this interview to a close. It's been really, really good speaking with you, Keith. I'm so glad that we got a chance to talk today!
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.