Coming Together to Share Stories of Losing a Parent to HIV/AIDS

Coming Together to Share Stories of Losing a Parent to HIV/AIDS

On a Thursday night at the Housing Works Bookstore Cafe in New York City, a group called The Recollectors came together for an evening of sharing and reflecting. Currently about 60 members strong, the group is scattered across the country, but that night, many took the time to fly in for the special evening. Each member of The Recollectors is unique, with his or her own story to share -- the unifying commonality being that they have each lost a parent to HIV/AIDS.

Founded by Whitney Joiner and Alysia Abbott, The Recollectors is a storytelling website and community for children and families who lost a parent to HIV/AIDS. The site affirms that the disease didn't just affect gay men who had no children; in fact, it affected everyone. The stigma surrounding HIV/AIDS is still going strong today, but back in the 1980s and 1990s it was worse. Many of the children of those who passed away from the disease during that time learned to grieve in silence and to not be open about what happened to their loved one.

Both Joiner and Abbott lost their fathers to AIDS in 1992. Abbott's father was an out gay man living in San Francisco while Joiner's father was closeted in suburban Kentucky. Until they met, each had felt isolated by their experiences and didn't know anyone else who had suffered what they had suffered. With approximately 650,000 people who have died of AIDS in the U.S. to date, the women are definitely not alone, and realizing that, they created The Recollectors.

Joiner took to the stage in that intimate setting on Jan. 8 to recount how she struggled for years to talk about her father. Although she had wanted to find a way to honor him, it wasn't until recently that she had the opportunity to do so. "Even though our stories are totally diverse, they all share a similarity," she said. "Our parents didn't survive, but we did, and we are here, and we all have stories to tell." It was a powerful statement that put the evening into perspective.

Marco Roth, who published an essay on the Recollectors website, was the first to read in the packed, standing-room-only space.

"When I was fourteen, my father told me that he'd contracted the HIV virus through an accident at the clinic he supervised, in Harlem. He had, he said, between months and five years to live, and neither my mother nor I were supposed to tell anyone about it: not our friends, not my teachers, nor my mother's musician colleagues," Roth said. Roth, a writer and literary critic, has since released a book, titled The Scientists: A Family Romance, recording his family's response to his father's struggle with HIV and the unexpected ways HIV affected their lives.

Following Roth was Viviana Maldonado, who had a very different story to tell. Maldonado's parents had left Mexico to start a new life in Texas and then Nebraska. Her family was more open about what was happening at the time to her father, a Baptist pastor, and received welcomed support from their local community in Nebraska, but it wasn't until she left home to go to college that her priorities and attitude shifted. "I think I was relieved to be away, too. I was like, 'I've had enough, I have to go.' I knew they'd be okay," she shared. When her father passed away, 11 years ago, she didn't take the time to properly grieve and instead was ready to move forward, almost feeling a sense of relief. Now, while her family prefers to distance themselves, Maldonado is ready to honor the memory of her father as part of the Recollectors.

The evening concluded with a panel that included Joiner; Abbott; Housing Works Policy Director Reed Vreeland; Sara Rafsky, daughter of Bob Rafsky, the founder of Treatment Action Group; and Mathew Rodriguez, Community Editor for

Vreeland lost his mother to AIDS in 1996 and was born with the disease. "I was living my whole life warped by my experience ... a box I was living in, and I realized I hadn't done anything," he recalled.

Vreeland is now a respected activist within the community who is no longer trapped in the box he created years ago. Rafsky and Vreeland actually went to school together but never knew at the time what the other was going through.

"I got this whole new wonderful family that welcomed me with opened arms," said Rafsky, regarding how her world changed after the release of the film How to Survive a Plague, which portrayed her father, and after she joined the Recollectors.

Rodriguez, whose father would have celebrated his birthday the night of the event, never knew his father as an adult. "I knew him as the person who would always give me Oreos when I did well on my report card, and then later in life as the man who was dying," said Rodriguez. "Yes, we are telling our stories, but we need to empower others to tell their stories, too." And that's exactly what The Recollectors is hoping to do -- bring together those who are willing to tell their stories and join a family of people who understand each other and serve as a support system for one another.