Researcher on LGBTQ family acceptance reflects on lessons from AIDS epidemic

"I saw their parents just devastated...realizing that this was the last time they would have with their child."

Caitlin Ryan (second from left) posing with staff and volunteers from the Family Acceptance Project. CREDIT: Caitlin Ryan
Caitlin Ryan (second from left) posing with staff and volunteers from the Family Acceptance Project. CREDIT: Caitlin Ryan

This year, the Family Acceptance Project (FAP) celebrates its 15th anniversary, marking a decade and a half of research and culturally competent resources to help families learn to support and protect their LGBTQ youth. FAP was the vision of Caitlin Ryan, a clinical social worker, researcher, and educator who still leads the organization. It was her work on the front lines of the AIDS epidemic that inspired her to pursue this vital work, she told ThinkProgress in an interview this week.

After spending the 1970s organizing some of the first networks for LGBTQ health providers, Ryan decided to apply to social work school, but found that despite her credentials, she couldn’t get into a program as an out lesbian. The one school that accepted her was Smith College, which sent her to Atlanta in 1980 for clinical training just as the AIDS epidemic was emerging.

“I lost a hundred young gay and bisexual men within a one-year period,” she recalled.  “People died so quickly when they were diagnosed. People would die in a week or three weeks.” 

Working with AID Atlanta, Ryan advanced quickly from volunteer to vice president, and upon graduating from Smith in 1982, served as the organization’s first executive director. Her primary responsibility was providing public education, including to medical providers, and raising funds to help provide immediate advocacy for people living with AIDS.

“The kind of animosity and fear was so extraordinary,” she said. “There was a fear of contagion if someone had AIDS in a workplace, or a patient in hospice, that others were at risk.”

In one instance, she recalled,

I remember a young man from Tennessee who lived a very long time in the hospital and really, I think he must have lived for more than a year, because no hospice or nursing home or placement that would normally serve someone in a step-down from the hospital would admit him. And I remember going to every single nursing home in Georgia…and not one of them would take him, so he lived in the hospital, and you can imagine not only the cost, but what that would’ve been like for him.

Ryan also challenged the many HIV transmission myths about sharing silverware or cups, noting that in the early days of the epidemic, people were required to “garb, mask, and glove” to enter the rooms with AIDS patients.

At the time, Atlanta had a massive, if closeted, LGBTQ population, many of whom had fled to the city from small towns across the South where they couldn’t be themselves. One of Ryan’s primary roles during this time was to meet with the families from those small towns when they came to the bedsides of their dying children.

I would really be a witness for what happened in that time when the parents learned for the first time that their children were gay or bisexual and were dying of AIDS. And sometimes the children couldn’t talk because they were on a ventilator, so I would help facilitate that leave-taking,” she said, noting that most of these interactions were final farewells. “I saw their parents just devastated, fathers sobbing and mothers realizing that this was the last time they would have with their child and they never really knew who their child was.”

During those interactions, Ryan said she observed in many of the families “an awareness that there could have been something different” — that they wished they could have had a relationship with their children but that they didn’t know how. There were no resources available at the time to help them learn how to support their gay children.

The most I could do would be to give them tissues or hug them, or hold their hand, or hold them up while they interacted for the last time with their child,” she said. In the aftermath, she said, she would also help families find bereavement groups where they could talk about losing a child to AIDS, because those weren’t the kinds of conversations they could have back in their small towns.

CREDIT: Caitlin Ryan
CREDIT: Caitlin Ryan

I saw a window that very few people ever saw,” she said. Most of the focus in those early years of the epidemic was on the fear and discrimination gay and bi men were experiencing. Very little concern was focused on the parents.

“[Those parents] were considered the adversary for being rejecting or not tolerating their [child’s] sexual orientation, gender identity, or gender expression,” she added. Though there wasn’t one specific moment of revelation, Ryan said she started to develop a sense that “there had to be a better way to help families learn to support their children before they died.”

Ryan continued to do front-line AIDS work in Atlanta, as well as in Washington, D.C., through 1985. In those countless interactions with families, she encountered many families of color and many religiously and socially conservative families. Even when parents had beliefs that made it hard for them to consider supporting a gay child, Ryan saw that “the level of connectedness underneath the fear or the anger or the disappointment in their children was so strong that there was a power there that really could overcome rejection.”

She didn’t have the language for it at the time. But thanks to her early work in LGBTQ health, she also had a sense that there were many negative outcomes when families rejected their children. “If we could reach them at an emotional level to provide accurate info and guidance — in the context of their cultural worlds — we could prevent these terrible things,” she said.

Those ideas percolated as her work shifted to supporting LGBTQ youth in the 1990s and eventually manifested in the founding of the Family Acceptance Project in 2002. Based out of San Francisco State University, FAP has generated unique research demonstrating the significant impact families can have on their children based on how they respond to a queer identity — both positive and negative. While a family’s rejection can have significant physical and mental health consequences for the children, for instance, a family’s support and acceptance has far more potential than any other source of support to equip those children with resilience.

Building off that research, FAP has since developed resources designed to help families from many different cultural backgrounds, such as a conversational guide specifically for Mormon families and tools that speak to families from different ethnic backgrounds. FAP also trains religious leaders, educators, and medical providers to work with families in initiating these conversations, equipping them with an assessment tool FAP developed that helps them quickly identify when children might be at risk of harm from family rejection. Implemented nationwide, such a tool could create an intervention system that would help protect children from consequences like homelessness and suicide.

According to Ryan, FAP has trained over 85,000 providers and families, making a small but important dent in the larger conversation. The challenge now is to implement this research-based model on an even bigger scale.

We have to meet families where they are,” she insisted. “We can’t introduce queer language to them that feels very foreign and as if it’s pulling their child away and separating their child from their family system. We have to engage them exactly at the level of disinformation where many of them start, so it really requires integrating our family support approach into disciplines and care settings.”

The world is very different now from the way it was in the early 1980s, when Ryan first saw the need for this work, both in terms of LGBTQ cultural awareness and the technology available for distributing the information. But  the need for promoting family acceptance is still high.

“The times may seem better and there may seem to be more resources,” she told ThinkProgress. “But because of the early age of coming out and young people now coming out in such a wide range of conservative social worlds, they need our support more than ever.”