Terri Wilder: Dr. Ryan, do you remember the first time you heard about AIDS?
Caitlin Ryan: I was in New York. I was having lunch with a friend, and we were health providers, and I had been doing what we would today call LGBT health starting in the 1970s. So I was already part of a network, and we had heard about the cases of unusual pneumonia and cancer in gay men. And so this was a great concern. I had friends who worked in sexual health, including the early gay men’s STD clinics in D.C. and Boston. And so we were wondering what this new health crisis would mean for the LGBT health movement that we were trying to build.
TW: So you heard about it at the very beginning of the epidemic, but when did it really enter your life personally?
CR: Well, I was part of the group that was doing early LGBT health organizing. So by 1978, for example, I was organizing the second National Lesbian and Gay Health Conference, in New York. And any new or emerging issues, of course, were of great concern. And this emerging unusual health situation just seemed to come on top of the deep concerns that we had already identified, particularly the stigma, the lack of access to care, the way that services often were provided painfully by providers who discriminated against LGBT people. So it entered my life immediately, because concern about those issues was enormous. And that was really—by the time I was in my mid-20s, I had made a commitment to work on LGBT health for the rest of my life.
TW: So what was your first reaction when you first actually started meeting people who had the disease?
CR: Well, I think because I had worked in LGBT health by then for a number of years, I was very attuned to the impact of discrimination and health risks and all of the negative impact of stigma. And so seeing a person with AIDS, I didn’t immediately see someone who was “ravaged” by AIDS. So my response was, you know, what can I do to help? This is really something that I had great concern about, because I knew that the prognosis was—there really was none. People died within two to three weeks of getting a diagnosis. And so my response was, “How can I help?”
TW: So you’re in the South in the ’80s. What was happening in AIDS in the South, in particular in Atlanta? You mentioned there was some concern about discrimination, and I’m assuming there was a lot of stigma, but do you remember any stories of what was happening in Atlanta? I’m assuming there was no social services, there was probably no experts at this point?
CR: No, there was nothing. First, Atlanta had an enormous LGBT community. So even in the early ’80s, you know, we always speculated that the size of the community was about 250,000. It was a very active social life. Hardly anyone was out professionally. And there were no LGBT health services at the time or ways to connect. So there was a great deal, I think, of doubt about, well, “What is this for the average gay person?” You know, “What does this really mean for me?” I think there was a lot of resistance to the early prevention messages. People thinking, “Well, I’m a healthy person. This isn’t going to impact me.” And that was before we really understood the different routes of transmission.
There was also a lot of fear of coming out. I wrote my thesis about coming out among lesbian professional women in the South, because I really wanted to understand the mechanisms of how people managed their personal and professional identities. And I was out—I was one of the very few people out professionally in the community—but it was hard to connect and to find other lesbian and gay people, because so many of them were in the closet.
TW: So you said earlier that you heard about this gathering and you went, and you really just wanted to say, “Hey, I’m here to help. What can I do to help?” Why did you feel the need to help? I mean, were you raised in a family where, you know, giving back was part of your culture? What was it in you that made you feel like you wanted to help? I mean, you said you had a commitment to LGBT health, but this was gay men who were mainly being impacted, and you identify as a lesbian. What made you want to help gay men?
CR: Well, I’m a human being, and I came from an Irish Catholic family. I was the first grandchild born in America. My great grandparents had been involved with the Irish Rebellion and fighting for rights. And, you know, I had an uncle who was a priest, an uncle who was an attorney, and an uncle who was a journalist, and all of them had commitments to social justice. And [in] my religious background, social justice was a very important part of living in the world. And when I was a teenager, I started working in the poverty movement. I was involved with the social movements of the 1960s, the civil rights marches and antiwar marches and emerging women’s movement. And then of course in the late ’60s, the emerging gay movement—and all of that was part of my sense of what it meant to be a human being.
When I got to Atlanta, I had organized a big National Lesbian and Gay Health Conference in New York. And I had proposed the idea of a national lesbian and gay health organization that would address the issues of discrimination and training and develop policies and standards of care that ultimately became the National Lesbian and Gay Health Foundation. I did all that work before I went to social work school, right around 1980, when Smith College sent me to Atlanta to do my clinical training. So all of that was part of not only my professional, but really my personal life. I too lived in a society that was discriminating against LGBT people. And I saw many people who suffered as a result of that through victimization, violence, substance abuse, and mental health issues.
And so those were all parts of my daily life. And when I got to Atlanta, there were a couple of people there who were gay health professionals who knew about my early work in LGBT health, and they said, “Well, you know how to start a gay health organization, how to develop an organization like this, will you help us?” So I said, “Of course.” And I became increasingly involved with AID Atlanta as it started as an organization. And a realtor donated a small office in a building that he owned. So I became an educator, and I became the editor of the AID Atlanta newsletter so that we could start to put out information and circulate it across different systems in the area. I became vice president of AID Atlanta and then I realized that we needed a base, we needed a platform, we needed a full-time staff.
So, increasingly, I did lobbying work to make that a possibility. And I lobbied all across all the systems in Atlanta, with Fulton County and the county government and the city council. One of the people I talked to about getting the services we needed was John Lewis, who was then on the Atlanta City Council. And then I was asked to become the first director of AID Atlanta. And I continued doing that work. It was never separate, you know? Serving, helping, addressing the needs of gay men was never something that was seen as, “Well, I wouldn’t do that because I’m a woman.” Well, I’m a human being and everyone is a human being. And also, if you lived at that time and saw what was happening, I don’t know how you could not get involved, because it was astonishing how people were put out of their homes when they were diagnosed. I remember one young man who came, was released from the hospital and came back, and his roommates burnt everything that he owned—the mattress he slept on, his possessions, his clothes, his books—and changed the locks on the door. So how could you not help? How could you not respond?
TW: So, you were the first executive director at AID Atlanta, which is now the oldest and largest AIDS service organization in the South. But at the time, it was small. It was grassroots. What were some of the challenges in the early years of, you know, the community coming together, starting AID Atlanta, being the first executive director?
CR: Well, the significant challenge then and now was funding. I spent a great deal of time lobbying, but really more explaining AIDS, explaining the needs, explaining how important it was to all of the policy makers at all the different levels at city and county and at the state level, to get the needed funding and support to start to really provide professional services. Doing AIDS education was really challenging, though there was a lot of fear, but that fear didn’t stop the risky behavior. And as I said earlier, many people felt that they were not at risk. They were—there was a lot of resistance to early AIDS prevention messaging. Part of what I think gay men felt was that, we finally come to a time in our lives and we can be out, be happy, be healthy, have sex with our partners, and be proud of who we are, and we’re not going back into the closet.
That level of pride versus prevention was a big stressor. There was a need to train providers at all levels, including the fear that people with AIDS were contagious. I did a lot of training of providers, but also training the scientists I worked [with] at the CDC [Centers for Disease Control and Prevention] in the early days. The scientists were heterosexual and didn’t understand the gay community. I remember a meeting we had: CDC scientists and prevention staff with STD investigators, many of whom were former military, where myself and other gay health professionals explained gay sex, the first time that the straight men had ever heard about how gay men have sex. And it was quite an education, but that information and that kind of training was needed to help them understand how to put the prevention programs in place that could be effective.
And then about 20 years later, more than 20 years later, I started the Family Acceptance Project, which was a research and intervention initiative. The first of its kind to help provide rigorous research to really understand how families respond and to develop a frame to help parents and family members learn to support their LGBT children. What I did from that point on, early on—as you know, people with AIDS died so quickly. I could barely do an intake and identify the services they needed before they died. Many of them died in two to three weeks of diagnosis in the year between 1984 and ’85, more than a hundred of the gay and bisexual men that I worked with had died.
TW: You coauthored an article with someone named Judy Macks called, “Lesbians Working in AIDS: An Overview of Our History and Experience.” And you said, “Few men may realize that those lesbians working in the AIDS epidemic several years ago,”—this was published in 1988—“were often isolated from their communities and were at times criticized for appearing to turn their backs on women’s issues.” Can you talk about that sentence and why you and your coauthor wanted to include that?
CR: Well, it was the reality of lesbians working in AIDS. There was an underlying LGBT health movement that we’d started in the 1970s, and at that time, our mechanism of information dissemination was the lesbian and gay newspapers. You know, we certainly didn’t have social media. We’d type things up on the typewriter and put them in the mail—and wrote, you know, articles in newspapers—and there was a burgeoning lesbian and gay health newspaper world at the time. And that meant that there was also a lesbian health movement. And that’s something that I was involved in in the 1970s when I started doing LGBT health. I observed that, you know, we had no information about lesbian health at all. There had never been a lesbian health survey.
And so, in the late 1970s, I started planning the first national lesbian health survey, in the early ’80s when I was living in Atlanta. I got funding in, it must’ve been ’81, from the Ms. Foundation, to do the first national lesbian health survey. So I worked with a lesbian researcher who worked in the state mental health system, and we developed a survey instrument. I spent a lot of time talking with lesbians from all different kinds of backgrounds to create that survey. It included, you know, questions about their experiences with AIDS at the time.
And by 1984 into early ’85, we received 2,000 surveys from lesbians from all the 50 states and the territories. And so I began to learn so much more about what it was like for them, especially living in a time where there had been an early promise of focus on lesbian health needs and then AIDS had come in and taken every resource that was available, because the funding needs were enormous, the discrimination was heinous. And we had to really respond to that at the time. So there was a level of resentment, I think, among some lesbians, to think, well, “Our issues as women are always secondary,” “They’re always less,” or, “They’re not even talked about,” and, “Now this epidemic is taking all of the resources, that we can’t even do this work that’s really important to us.”
I think those feelings were across the board among many members of the population. And I experienced them, as well. And I think that some people felt that we were turning our back on lesbian health needs or, you know, the need to really build a lesbian community, because they were also discriminated against and also suffered from victimization and discrimination and many other health and mental health concerns.
The other side of it was, I also experienced discrimination from gay men. There were gay men who felt that women and lesbians had no place to work in AIDS. They felt that this was their community, that they should be the ones to be providing leadership and doing the work. I remember when I worked at another AIDS organization and I was the director of funding, the head of the fundraising committee refused to meet with me because he was really angry that women were working in AIDS. And it took six months for him to even talk with me. I think the times and the level of fear among the population in general, among providers in our community, the kinds of discrimination that was occurring—that really generated a lot of anger that often got displaced.
TW: So, what are you most proud of from this time period in the ’80s?
CR: I helped start a lot of organizations. I recognized critical needs that weren’t being met. I was the coordinator in 1985 [of the] National Lesbian Gay Health Conference and AIDS Forum. And I had seen, of course, working in the South, I’ve worked with many African-American gay and bisexual men and their families. I’ve worked with Latino gay and bisexual men, and I saw this terribly urgent need, unmet need of addressing the needs of people of color with HIV and their families. So, with a colleague, we talked about the need to do something right then at that conference.
And so I went to NIH [National Institutes of Health], and I asked for funding to bring together minority people of color working in the AIDS epidemic from across the U.S. to identify the critical needs of people of color with AIDS and to help them increase their capacity to work at the local level, but in particular to give the NIH a report on what those needs were so that they could begin to address them in funding. And so I convened that meeting with people of color from across the U.S. working in the epidemic. We had a two-day planning meeting. I wrote a report that went to the NIH. I also worked with colleagues at the American Psychological Association to plan a day for all of those participants to meet with their elected officials in D.C. and to present these needs and talk about what they really needed in their home communities.
And that group continued to meet and called itself the National Minority AIDS Council. I wrote a grant to start the National Association of People With AIDS, to the Chicago Resource Center. And then we realized that people with AIDS were, because this was so early, they didn’t have the capacity to run that organization because of their health crises and because of the very short time following diagnosis. So I staffed that organization until people with AIDS could actually begin to provide the staffing and run that organization. I helped some of the early organizing efforts at the Federation of AIDS-Related Organizations, where the National Lesbian and Gay Health Foundation helped start an AIDS resource center.
That lasted for about a year, and I helped coordinate that. And that led into—the Federation of AIDS-Related Organizations went into AIDS Action Council and the National AIDS Network. Those were things that I was doing in addition to providing direct services to people with AIDS and their families. The one thing that I wanted to do more than anything was to make a difference. And I guess what I’m saying that I’m most proud of is my commitment, and that I feel that I was able to make a difference.
TW: I want to tap into something that you’ve kind of mentioned a couple of times, like working these long hours, being witness to a hundred deaths in one year. How did you navigate that personally? I’m sitting here thinking, that is a lot for a person to be witness to, and how did you deal with grief? How did you deal with loss? How did you keep going despite all of this around you?
CR: Well, yes it is. And yes, it was, and I couldn’t give myself the luxury of grieving, you know, more than a short time at someone’s memorial service, because the situation was so overwhelming, and until there were structures in place to provide for those needs, there wasn’t the time for expressions of personal loss. By 1985, I realized that I needed to step back from direct service, and I needed to grieve those losses. And so I stopped doing direct service. And what I did instead was—I was hired by Intergovernmental Health Policy Project at George Washington University, and I became the cofounder and then the codirector of the first AIDS Policy Center, where we did research and analysis on AIDS legislation, policies, and trends. We wrote monographs and publications and gave testimony to Congress and other legislative committees, and that helped shape a lot of legislation.
One of the things I did was I co-wrote the first book on policy that provided guidance and recommendations for addressing AIDS. And more than half of the recommendations in that three-volume report were adopted by the first U.S. Commission on AIDS. We provided technical assistance across the U.S. and actually did conferences with the Institute of Medicine on financing, on Medicaid expansion, on all kinds of innovative ways to address the epidemic. I went into therapy with a good therapist. I really got in touch with those losses.
TW: In that article that you wrote that I referred to earlier, there’s a line that says, for those of us who will survive, clearly we understand that we carry on our history, our collective memory and our accomplishments. But lesbians also carry a burden of guilt. Most of us, after all, we’ll survive. As you reflect on that time when everything was very chaotic and scary, what are your thoughts now on surviving that period, and what do you think it’s done for you as a human and as a professional?
CR: Well, one thing it taught me was how to advocate and have to advocate when the stakes are so high and the barriers seem insurmountable. You just can’t let anything stop you, and I haven’t. The other thing it taught me was a depth of compassion that—you know, I was a much younger person then. I think passion grows with age, but it also grows with experience. And I had the experience of not only working with people that I would never have known but for their diagnosis or their families—of working with people who were really vocal and who were angry and in need of working with people who were discriminating and cruel and just refused to help. And so I had to really learn, how do I deal with all of these different kinds of situations, including enormous loss and the heartache of losing people who became close friends, and losing them in the short term and time?
I think that’s what led me now to be able to do this work with the Family Acceptance Project and working with socially and religiously conservative families with LGBT children, many of whom have rejected their children and are very rigid in their thinking and have have thrown their children out of the home, or their children have been removed because of abuse and neglect. Our research identified over 100 specific family accepting and rejecting behaviors. And we linked all of those behaviors with wellness and with risk and serious health concerns. And we show the relationship between family rejecting behaviors like isolating your LGBT child, not letting them participate in an LGBT support group, or using religion to try to change or prevent their sexual orientation or gender identity, or not letting them have an LGBT friend, and the relationship between those behaviors and HIV and STI and sexual health risks as well as suicidal behaviors, substance abuse, depression, low self-esteem.
For years, I’ve really been working with the people that most providers don’t want to work with. The people who are seen as rejecting their LGBT children who are vulnerable and have experienced a lot of trauma. And the family support model that we’ve developed not only enables us to work with families, but it enables us to help them learn to support their LGBT children even when they disagree, even when they believe that being gay or transgender is wrong. And so I’ve created behavioral language and a lot of research-based family education tools, including a faith-based series of materials that are best practices for suicide prevention.
And we can do it, because this is not a moral issue. It’s a health and mental health issue. And of course our research provides an empirical foundation for showing that. I think part of the challenge is that people often talked about morality. They certainly talked about that early in the AIDS epidemic. But morality and doctrine are not what this is about. This is about health and mental health and dignity. And if you think of the world’s major religions, the foundation of the belief is compassion, mercy, love. And so I’ve learned to frame these issues in a way that people can hear it that didn’t hear any of this at the beginning of the AIDS epidemic. And I think it’s given me a great gift, and my biggest challenge now is to try to disseminate our work or model or intervention tools and resources—of which, of course, sexual health is a really important part of them. And to be able to do that as quickly as possible, because I don’t have another 50 years ahead of me. And I think a huge part of my life has been doing this work as fast as I can.