The Recollectors Aids Collage 860X440

Alysia, Whitney, with their fathers.

Last month Visual AIDS and the New York Public Library hosted, "The Personal and The Political: Losing Parents to AIDS", a panel discussion moderated by Sarah Schulman featuring Kia Labeija, Mathew Rodriguez, and Alysia Abbott. Inspired by the panelist—who spoke about the impact of the ongoing epidemic in their lives—members of the audience used the Q&A period to speak openly about loved ones lost to the epidemic, and those currently living with HIV/AIDS. For many this was the first time they spoke openly about their experience. The event dovetailed with a project Abbott, and fellow writer Whitney Joiner had been working on called The Recollectors, a website and community platform where those who lost parents to HIV/AIDS can gather and share. With a successful Kickstarter almost wrapped up, Abbott and Joiner talk to Visual AIDS about their experience growing up, the role HIV/AIDS plays in their life now, what they hope for the site, and what it means to be able to connect to those that can share their story. Click here to watch The Personal and The Political: Losing Parents to AIDS.

Visual AIDS: When did you know that there was nothing wrong with you or your family? That in fact, there was something wrong with the state of things that would lead a child to be ashamed of their family?
Whitney Joiner: This is a tough question: I didn't have a revelatory political moment around AIDS that led me to this realization. Although as an adult looking back, I see that it was painfully obvious he was gay, my father never came out of the closet, and died of AIDS five months after he revealed his status to my brother and me. Since we lived in a small town in Kentucky and my family was understandably very hurt after his death, I carried a lot of that shame for a long time. So I guess for me, it came through a lot of great therapy and my Tibetan Buddhist meditation practice, both of which I came to in my early 20s.
Alysia Abbott: As I left high school for college, I came to respect my father more and came to see the larger society as conformist and f*ck-ed up. Outside of our tiny Haight Ashbury apartment, I was spared his obsessions and could see him with more clarity and love. Where in high school I'd been bitter about our having no money, and his "tricking around," in college I just felt incredibly lucky to have him in my life. I started opening up to close friends about his being gay and even proudly reading excerpts from his letters to them. I should add I don't think I was ashamed of my father. But I felt ashamed of my difference and I blamed that shame on my dad. I failed to see just how brave he was to come out when he did and to raise me as a gay dad when so few gay dads were around.

VA: As people closely connected to HIV/AIDS you have lived through many different cultural moments related to the epidemic. There has been times of big public and political discussion, times of near silence, and now a resurgence of sorts around HIV/AIDS. How do you see The Recollectors fitting in to the cultural moment?
WJ: It's strange to think of something as personal as this project as being "timely," but it does feel that way. Both Alysia and I had our 20-year anniversary of losing our father a year and a half ago, and we talked about what a big milestone that was for each of us. With her book, Marco Roth's memoir The Scientists, Victoria Loustalot's memoir, This is How You Say Goodbye-- all about parents-- and then Sean Strub's memoir Body Counts, of his time in the trenches, along with all the movies and documentaries this just seemed like we were far enough out of the worst of the crisis that people were ready to reflect.
AA: With AIDS the topic, or backdrop, of so many new books, documentaries and feature films (A Normal Heart will be broadcast on HBO in May) it seems there's a growing audience for the history of the epidemic. But it's imperative that we not see AIDS as merely a nostalgia trip but as a disease that's ongoing and that continues to impact people lives, including the lives of surviving children. Many of these children, including many adult children, have yet to shake off the stigma around their parents death. Many others are HIV positive themselves. I'm hoping that The Recollectors will broaden the conversation around AIDS by revealing the vast and diverse community of survivors whose experience (past and present) is worth hearing.

VA: One thing that came out at "The Personal and The Political" event —hosted by Visual AIDS and the New York Public Library—was that people who lost parents to AIDS need a space and place to gather. Your site will be one such place. Do you hope that people will also have a chance to meet in person?
WJ: Absolutely! We already have multiple plans to meet in person. A few of us in New York are planning to do the AIDS Walk this year; that's something I never would have felt comfortable doing on my own in years past, without a community. We'll have a Recollectors launch party, where we hope other Recollectors will join. And the All Souls Church on the Upper East Side has offered to hold a Father's Day gathering on Sunday, June 15, for any Recollectors and friends of Recollectors. Besides these casual social gatherings, we plan to hold more formal panels and talks based around the experience of losing a parent to AIDS, where we can really expand the dialogue and partner with other AIDS organizations.
AA: We've started to connect online (which has been incredible) but, like Whitney said, we're very committed to meeting in person. Access is a concern. I've been emailing with someone who found out about The Recollectors through Peter Staley. She and her sisters were living in rural Nebraska when their father became ill and died in 2003 and they felt completely isolated. I'll be meeting this young woman later this month, because I happen to have family in Nebraska, but it raises the question: how do you connect with people in more remote parts of the US? In an ideal world we could build up a large enough community of Recollectors that we could have chapters across the country.

VA: In "Gentrification of the Mind: Witness to a Lost Generation", Sarah Schulman mentions that a movement of people who lost their parents to AIDS would be powerful. What goals, ideas and/or dreams do you have for the project?
I just read Gentrification of the Mind and found it to be incredibly urgent; a call to arms. Sarah Schulman has been on the front lines and knows firsthand why it's vital that we remember the lax--to put it lightly--government response to AIDS in the 80s and 90s. With The Recollectors, we want to allow for all types of stories of those who lost parents to AIDS -- parents who were activists and those who weren't; gay parents and straight; people whose parents contracted AIDS through sexual contact, shared needles, transfusions, etc. The small community of "recollectors" who are already talking and sharing is heavy on the activist side, but that's not always the story of AIDS, of course. My dad certainly wasn't an activist. Our two main goals with The Recollectors are to 1) get these extremely diverse stories out into the wider culture, no matter what the stories are, and 2) connect those who lost parents to AIDS with one another so we can share and relate.
AA: I read Sarah's book in the late stages of writing Fairyland because I needed to channel some of her righteous rage. My sadness over AIDS has always been privately felt, I never connected with a larger community in this loss and reading her book was just amazing in this way. And incredibly inspiring. When we first met she was genuinely curious why children of people who died of AIDS haven't yet organized and I wanted to tell her that many of these children learned, as kids and teenagers, that truth and speaking out is dangerous. These lessons were never unlearned. But the times have changed and so have we. As we become men and women we can own our truths and reshape the arc of our stories. That's what I see the Recollectors is about. The power of remembering, of reclaiming stories to tell a larger story.

VA: What is the best part of telling your stories?
Meeting other recollectors. It's been a little over a week since we've launched our Kickstarter campaign, and almost every day, it seems, we're introduced to a new person who shares this experience. After years of feeling so isolated and alone, it's been incredible to meet others who also know what it's like to have a parent grapple with this unique disease, and this community will only grow.
AA: The best part of the Recollectors, for me, isn't having the opportunity to tell my story (which I did with Fairyland) so much as it is about hearing the stories of others. I love learning how similar and dissimilar everyone's experience is. I'm eager to listen to learn about the different aspects of how AIDS impacted our families and consider the ways our stories are unique and universal. Also: I'm humbled by the bravery of some of the people we've met so far. I had it hard being an only child taking on the care of my dad but I never had to suffer the sense of family shame and secrecy that so many have known.

Whitney Joiner is a features editor at "Marie Claire" magazine. She grew up in Kentucky, attended Smith College, and has worked at,, and "Seventeen" magazine. For many years she lived in Marfa, Texas, where she wrote for the "The New York Times", "Elle", "Glamour", and other magazines. She is the co-author of "The Drama Years: Real Girls Talk About Surviving Middle School--Bullies, Brands, Body Image, and More".

Alysia Abbott is a writing instructor and the author of "Fairyland, A Memoir of My Father", named a New York Times Editors' pick and ALA Stonewall Award winner. She's a native of San Francisco, California and a graduate of The New School Writing Program. Her work has appeared in "The New York Times", "Vogue", "OUT", "Real Simple", "Psychology Today", and other magazines. She is also an honorary board member of COLAGE, which supports and unites children with LGBT parents.