A New Book Honors the Straight Women Who Fought Alongside Queers Against AIDS

Contributing Editor
Photograph, taken in 1989, of members of the nonprofit Junior League of San Francisco with a resident of their AIDS Homecare and Hospice Program.
Junior League of San Francisco

Chicagoan Victoria Noe was a member of that city's theater community when the AIDS epidemic hit in the 1980s. Horrified by the loss of friend after friend, she threw herself into fundraising for AIDS services, eventually serving as development director of Chicago House, then as a consultant for several different organizations.

When her daughter was born in 1994, she dropped out of the movement, burned out. But an essay she was asked to write in 2011 about those dark days brought it all flooding back to her, leading eventually to Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community, her just-published book. The book encompasses everyone from activist women who've since died of AIDS like Iris de la Cruz to survivors like Rae Lewis-Thornton; from key researchers like Mathilde Krim, Ph.D., and Françoise Barré-Sinoussi, Ph.D., to longtime advocates like GMHC's Krishna Stone and the late Ruth Brinker of San Francisco's Project Open Hand.

Noe, who will be appearing June 8 at the Printers Rowe Lit Fest in Chicago, spoke with TheBody about reliving traumatic times, the power of honoring the past, and why she's proud to call herself a fag hag.

Tim Murphy: Hi, Victoria! Thanks for speaking to us. So how did this book come to be?

Victoria Noe: Well, I had been out of the AIDS movement for many years but in 2011, I ran into Tracy Baim, the publisher of the Chicago LGBT paper Windy City Times, and she asked if, for her "AIDS at 30 Years" series, I'd like to write a reflection on my involvement. I was absolutely sure I could not remember anything, I felt like I had buried it so deep. But I was wrong. I sat down to write something and it all came gushing back, especially the anger at what had happened, the way people were treated. And that started me back. Two years later, I published a series of small books about grieving friends, and one of them was about grieving friends who died of AIDS.

But what really got me back 100% into the community was when I went to my first ACT UP meeting while in New York in 2013. I was 60 years old and decided that I was way overdue. I didn't have time in the old days, I was too busy. So I walked in and they asked why I joined. I said, "Because I've never been arrested and I think I'm overdue" [laughs]. And I still haven't been arrested, but I've done demonstrations and my husband is prepared for me to be arrested eventually.

TM: What does it feel like being back in the AIDS and/or queer community after being gone for so long?

VN: A little surreal. I've had frequent episodes of déjà vu. I go to exhibits of artwork and memorabilia from those days, and it reminds me of what I was doing and who I was doing it with. I'm not gonna call it nostalgia. I don't long for those days. It was a battlefield, a constant state of war. But there also was a sense of community that I think I lost for a long time. What gives me joy is seeing support for long-term survivors and the recognition of their needs. And also that people are telling their stories. I don't think that 10 or 15 years ago, the women in my book would've told their stories -- it still would've been too fresh.

TM: And speaking of that, you've either spoken to or written about so many women for this book -- it's really mind-blowing, all the names I both was and was not familiar with. Just to name a few, we have Iris de la Cruz; Krishna Stone; Ruth Brinker; Susan Rodriguez; Carol Marsh from Miriam's House in Washington, D.C.; Molly Cooke, M.D., at San Francisco General Hospital; Constance Wofsy, M.D.; Mathilde Krim, Ph.D.; Liz Taylor; Cy O'Neal; Mary Fisher; Elizabeth Glaser; Rae Lewis-Thornton; Nanette Kazaoka; Jeanne Gapiya of Burundi -- on and on. Which of the stories stand out for you?

VN: One was the designer Ilene Shaw, who went to Parsons [School of Design] and was in a group with seven gay men. They went to class together, lived together, worked together, and she's the only one left. All seven of them died of AIDS. And when we met for her interview, she cried a lot. A lot of the women cried, and you could see that it wasn't just a matter or one or two friends, it was their whole social circle. That's the kind of loss that was probably not that uncommon for many straight women.

TM: Other standouts?

VN: The stories involving women of color were really powerful for me. Rae Lewis-Thornton, who announced to the world that she had AIDS on the cover of Essence, or Chicago's Rev. Willie Barrow, whose son, a gospel singer, died of AIDS. I think both his death and her position as a civil-rights icon made her a very effective and unique advocate. it's fine for [us as white women] to have educational meetings about HIV in an office building in midtown Manhattan on a weeknight. But a woman of color who lives in Harlem and comes home from work to fix dinner for her family is not going to come back downtown to hear a lecture from a white woman who knows nothing about her life experiences. I think a lot of well-meaning white people, gay and straight, are surprised that they may not be as effective in spreading the word about HIV. That's why The Red Pump Project was so successful. It was African-American women talking to African-American women. Anybody will relate more to someone like themselves.

TM: So you said you got burned out around 1994? Describe what that was like.

VN: It feels like you're running on empty -- even below empty -- that emotionally and physically you have nothing left. And you find yourself saying, I don't care. And you do care, but you have no more left to give. And there's nothing left for yourself. And what I didn't know at the time, what I think a lot of people didn't know, was that you could step back. But it felt like you could not give anything less than 110% all the time, because people were dying. You knew you'd open up the gay paper every week and the obit of someone you knew was going to be in there. There was the knowledge that, yes, you got this $100,000 grant, but you really needed $200,000, so you can't even celebrate what you've accomplished because there's so much more you need to do. At one point I was raising $1 million a year. I look back on that like, "Wow," but at the time it was never enough.

It felt selfish to say I needed to take time off. And once I did, I just shut [AIDS] off and went from being all in to all out. I would mark World AIDS Day and keep up with the drug developments that started happening around 1996, but that was it.

TM: Did the women you talked to for the book share similar feelings?

VN: A lot of us talked about how we didn't know if we made any difference at all. Almost every woman in the book, when I reached out, said, "Why would anyone care about this? I didn't do anything." That's what Trudy James, who started the buddy programs in Arkansas in 1989, said to me. This was when churches would not even give the sacraments to gay men with AIDS. And she wound up creating 120 buddy teams throughout Arkansas. And when I reached out to her, she asked, "Do you really think anyone would care about this?" And I was like, "Yes, I do."

TM: I was wondering if you were one of the Chicagoans that novelist Rebecca Makkai interviewed to write The Great Believers, her very acclaimed novel about the gay community fighting AIDS in 1980s Chicago.

VN: I was not, but we're in touch a lot. I relate to what her [survivor] character Fiona goes through in the novel, when her couples therapist asks her of her partner, "What if you give yourself to him?" and Fiona says, "He could die." I felt that way for a long time, not just with my husband but with friendships. Even today when I don't hear from someone for a while, my first thought is, "Well, they're either dying or they're dead." It doesn't occur to me that maybe they're just busy [laughs].

TM: I did want to ask why you chose to focus on just straight women, when so many lesbian and bisexual women were part of the AIDS movement, and also especially when those categories overlap.

VN: As I talked to people, I realized that lesbians were already part of the LGBT community. Straight women were on the outside, and there were pros and cons to that. A pro was that when I was raising money, I could go to corporations that wanted to give money but didn't want to come into contact with anyone with AIDS or in the LGBT community at all. I had a lot of anonymous donors, let's put it that way. I could straddle the two worlds. But the downside was that I did not date for three years. If I told a guy I was working at an AIDS agency, that was usually the end of the conversation. Why would I want to do that? Did that mean I was really a lesbian or had some hidden agenda?

TM: What was it like being around gay men all the time?

VN: The gay men were nicer to the lesbians, but not a whole lot nicer. There was a real ownership on their part of the epidemic that I did not disagree with, but there was a lot of suspicion when someone from outside the community came in. It took time and work to build trust. And I understood the suspicion. There were people out there more than willing to take advantage of those who were desperate and dying, from insurance agents to [quack] doctors. I hope there's a special place in hell for them.

TM: So let's talk about the now thankfully somewhat-outdated term, "fag hag."

VN: Well, the title of the book popped into my head early on. I figured I'd use it as a working title and change it later. I'd say to women, "Don't worry, I'm changing the title." And almost every one of them said, "Why? That's me. I own that name." Certainly before the epidemic, it was not a compliment. But I felt like, "OK, if all the women are OK with it, then I have to be OK with it." Actually, the people who've objected to the title have been men. They ask, "Why are you using a slur?"

TM: Well, I feel like every group has the right to reclaim their own slur.

VN: Exactly. And I never thought this would be one we took back, but we did.