Cover Story: Make a Difference – Author & Activist Victoria Noe

Make a Difference – a July 2019 cover story and photo shoot originally published in A&U Magazine
In her new book, Fag Hags, Divas and Moms, public speaker, author & ACT UP activist Victoria Noe talks about the Legacy of Straight Women in the AIDS Community
Text & photos by Alina Oswald

Last month I attended a panel discussion on public spaces and activism at the Public Art Fund Talks, in New York City. The event, Public Art and Activism: 1980 to Today, featured artists and activists such as Joy Episalla, Paola Mendoza, and Avram Finkelstein [A&U, June 2019], and emphasized women’s activism, as well as women and the AIDS epidemic. Although I was aware of the topic, while waiting for the event to begin, I looked around only to notice that there were quite a few women in the audience; and found it surprising, because that doesn’t usually happen when it comes to HIV/AIDS-related events of any kind.

For some reason Victoria Noe’s words referring to the early days of AIDS activism came to mind: “I wish I had a dollar for every meeting that I was in, where I was the only woman.”

Author, advocate and public speaker Victoria Noe photographed by Alina Oswald for A&U Magazine July 2019 cover.
Author and AIDS advocate Victoria Noe photographed for the July 2019 A&U Magazine cover story by Alina Oswald.

Victoria Noe is a public speaker, educator, author, and activist. She became involved in the AIDS community in its early years, during the late eighties, in Chicago, where she worked as a fundraiser, helping AIDS service organizations. “I never thought of myself as an activist when I was a fundraiser,” she says. “I assumed you had to march in the streets and get arrested to be an activist, but that’s just part of it.” She has marched in the streets—for the AIDS community, against wars, in support of women’s rights. Every time she takes it to the streets, her husband gives her bail money, just in case she needs it. “I still haven’t been arrested, so I have that to look forward to,” she says, laughing.

Being an activist does take the courage to go out in the streets and demonstrate, while risking being arrested. But being an activist is also about advocating, not only for yourself, but also for others; it’s about speaking truth to power whenever you get the chance.

When it comes to HIV/AIDS activism, in particular during the first decades of the epidemic, “women” and “AIDS “ or “women” and “AIDS activism” were words not often used in the same sentence. And yet, women—straight, gay, trans, and everything in between—did make a difference during those days. Their contributions are captured in art as well as in real life. For instance, in HBO’s The Normal Heart, Estelle, played by Danielle Fernandez, embodies the lesbians who contributed to the care of those who were dying. Today, in real life, we might recognize facets of Estelle’s work in DJ Mimi’s support for today’s HIV community. Through the years of the AIDS epidemic, we’ve come to also recognize the life-long activism of transgender rights and HIV/AIDS advocates, such as actress Alexandra Billings [A&U, March 2017], celebrity host and actor Ron B [A&U, June 2018], and performing artist Reverend Yolanda [A&U, March 2019].

Although the straight women involved in the AIDS community were considered outsiders, oftentimes they became the fabric that connected not only the straight and gay communities, but also the HIV-positive and HIV-negative communities.

“I knew everyone was at risk, not just gay men. And I knew I did not want to look back and say, ‘I should’ve done something.’”

Victoria Noe book event at The Center in NYC. ©Alina Oswald.

Like many straight women in the early days of the epidemic, Noe’s participation in the AIDS community was looked at with some suspicion from both within and outside the community. “Why are you doing that? It has nothing to do with you” were some of the usual comments she had to face at the time, comments that, I might add, I still hear to this day, especially coming from some individuals outside the community. “Well,” Noe tells me, or maybe she tells those (still) making these kinds of comments, “I knew everyone was at risk, not just gay men. And I knew I did not want to look back and say, ‘I should’ve done something.’”

Victoria Noe often talks and writes about HIV/AIDS-related issues, as well as about everyday life issues, addressing subjects many would rather avoid addressing. In her books, as well as in her blog (a must-read and –follow, by the way), Noe takes on the uneasy, unpopular subject of grief, related or not to HIV/AIDS, and answers questions about grief many have always wanted to ask but were too afraid or didn’t know how to ask.

“In the spring of 2006, I was having tea with my friend Delle Chatman after we dropped off our daughters at school,” Noe comments on why she chose to take on the subject of grief. “She was in remission from ovarian cancer that would return and kill her about seven months later. I told her I had an idea for a book: stories of people who were grieving the death of a friend. Understand that I had never written a book before, and Delle was truly larger-than-life: author, playwright, photographer, and screenwriter with a burning desire to be ordained a priest in the Catholic Church. I was in awe of her, so I didn’t expect her to encourage me [to write the book].”

It took Noe almost three years to start working on the book. She tried to write right after her friend passed, even joined a writing group, but the writing just wasn’t happening. Noe recalls, “whenever I was stressed I could hear her voice: ‘If you’d write the damn book, you wouldn’t have to worry about that.’

“Six months after I suffered a concussion in 2009 in a fender-bender, I woke up one morning knowing exactly how to write the book. It turned out pretty much the way I imagined, though I wound up breaking it up into six small books,” the Friend Grief series.

While interviewing and researching the individuals mentioned in these books, she discovered that people actually wanted to talk about their grief. For some of them it was the very first time they ever talked about it, and “went through a serious amount of Kleenex while doing so.” Most of them were strangers, but opened up and talked to her because she was willing to listen. She mentions that it’s difficult for those who are grieving to find someone to talk to, to share their grief with, “because the subject of death makes a lot of people squeamish. I felt honored that they shared their stories with me.”

The grief related to HIV and AIDS is…was different. In particular during the eighties, whenever individuals would lose someone to AIDS-related causes, they were often denied “traditional expressions of grief, like religious funerals and burials. Many were denied that final grace,” Noe says. “Even obituaries that accurately attributed the cause of death were unlikely to be found in mainstream newspapers. So they had to create their own: ‘celebrations of life’, street funerals, the NAMES Project/AIDS Memorial Quilt, and various memorials.”

AIDS-related grief was…is unique but it’s also similar to other types of grief. In her Friend Grief book about grieving friends in the military, Noe writes about a concept called moral injury. “It’s related but not the same as PTSD,” she explains. “In its most basic form, it’s survivor guilt. It figures prominently in the scourge of suicide in the veteran community. It also is something that long-term survivors in the AIDS community—whether they’re HIV-positive or HIV-negative—experience. And though Larry Kramer refers to it as a plague, I’ve always felt like the early days, in particular, felt like war.”

In one of her presentations, Noe compares these two seemingly very different groups—long-term AIDS survivors and military veterans. It turns out that they have more in common than most people realize.

I met Victoria Noe in person this past spring, at The Center, in New York City, where she talked about her new book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. The panel also included GMHC’s Krishna Stone. The two women reminisced about how things used to be in the eighties. Noe was single, doing fundraising, and whenever she would go out on a date, which happened very seldomly, mentioning that she was raising money for AIDS was like “pouring cold water on the date.” Stone had a very young daughter at the time, hence, no time for socializing. Their daughters are now adults. Stone’s daughter was in the audience, asking questions during the Q&A session following the event and cheering her mother on.

Sharing numerous interviews and the author’s own memories, Noe’s book revisits the history of AIDS, while documenting the activism of straight women involved in the epidemic. With that, it fills a gap not only in the history of AIDS, but also in women’s history, overall. “It honors the contributions of straight women around the world, who often rushed in when others ran away,” Noe comments.

The women she interviewed for the book, those whose stories she included in the book, all got involved in the fight against AIDS for various reasons—some more personal than others. “Our friends were dying,” Noe comments. “I don’t think HIV/AIDS is a community where you can remain dispassionate. You may [start out] thinking that’s just a job, but it won’t stay that way. I’m not that concerned with what brings people in, as long as they’re making a difference.”

The book’s title, Fag Hags, Divas and Moms, started out as a working title that needed to be changed in order to avoid the negative reaction she thought it would trigger. “After all, being called a ‘fag hag’ was not usually meant as a compliment,” she explains. “But when mentioning the title to women she interviewed and telling them that she’d change it later, they insisted that she should keep it. “They identified with it and wouldn’t hear of it being sanitized in any way. Honestly, the only negative comments have come from a very few gay men who objected to the use of ‘fag’” she says.

The straight women in Noe’s book come from various walks of life. The commitment, dedication, passion and courage these women (including the author, herself) have shown are remarkable. To do their work, they seemed to have found those “droplets of hope,” as author and activist Joel Rothschild [A&U, October 2003] would say, in times when there was not much hope to go around.

“There have been times while I was working on this book, when I would stop and think, ‘Did that really happen?’ And of course it did, because I remembered it. But there’s sometimes a surreal quality to the memory of those early days.

“I don’t remember thinking that I was strong. I only remember feeling not strong, which is why I backed off in 1994 after my daughter was born. The well was empty, as they say. I wanted to keep at it, but the constant deaths—and pettiness of some people—just became too much.

“I still feel a little guilty for that long gap until 2011. I believed at the time that I had to be all in, to give 110 percent every minute, because that’s what the people around me were doing. And they probably didn’t feel strong, either. We were just doing what we felt we had to do.

“I felt—and still feel—the same thing that these women felt, which is that we just wanted to do something. I think it’s that simple.”

Each woman portrayed in Noe’s book shines through in her own way and makes use of her own talents to fight the fight, to help the AIDS community:

The divas, the women everybody knew, accomplished incredible things that changed the course of the epidemic: Elizabeth Taylor [A&U, February 2003] is known for her advocacy and fundraising; Françoise Barre-Sinoussi and Dr. Mathilde Krim [A&U, December 2001], for their research; Princess Diana, for fighting stigma.

The “fag hags”: well-known women like actress and playwright Nora Burns [A&U, April 2017], as well as unknown faces in the crowd who develop strong friendships with gay men. “Fag hag” is “not the most flattering description, [it]’s a combination of two slurs,” Noe writes.

“Now there is a strong, very public focus on women, particularly women of color and trans women. Groups like Positive Women’s Network and leadership from women of color like Taraji P. Henson are changing the community in ways that weren’t possible thirty years ago.”

The phrase was first used in the seventies, as a pejorative, to describe women who aligned themselves with gay men in the fight for equality or, as often insinuated, in place of romantic relationships of their own. In the nineties, the phrase became more popular, thanks to shows like Will & Grace and Sex and the City.

Truth is that women in this particular category may live in happy romantic relationships of their own, but when it comes to friendships, they are drawn to the gay community. This kind of friendship might be difficult to explain, but, I believe, it has to do with a feeling of acceptance (flaws and all), of belonging. Perhaps there’s also a level of mutual understanding—of common histories, struggles—that underlines this kind of friendship. Personally, I’ve always found a safe place in my own friendships with gay men, a “home” where I can be myself, because gay friends don’t judge, they listen and comfort, brighten the darkest and gloomiest of days, and always, always prove themselves friends in need, indeed.

The educators, and also activists like Nancy Duncan [A&U, May 2017], and then the women whose stories are being told and heard for the first time: Their work was just as important, although they didn’t think so and wondered why anyone would care about what they did: Trudy James overseeing over 100 CareTeams (a buddy program matching a person with AIDS with volunteers from a faith community) in Arkansas in 1989; the Junior League chapters around the U.S. and Mexico supporting AIDS service organizations and advocating at all levels of government since 1986; and other unsung heroes, straight women who rushed to help gay men touched by “the plague.”

There’s even the impact of fictional straight women in books, films and TV shows, whose stories enlightened and educated in ways that were surprising and effective.

By including all these women in her book, Noe wanted to make the point that, when it comes to activism, everyone can do something. “It may not feel like much. It may not feel like anything. But everyone has talents and time to share that can lead us to the end of this epidemic.

“One interesting thing about the involvement of straight women in the epidemic is that we weren’t competing with each other. I certainly never felt that there was the competition I’d seen, for example, in a more traditional workplace. There was so much critical work to be done, in big cities and rural communities, that we just did it. We didn’t have time for bullshit. We still don’t.”

AIDS was first known as GRID—Gay-Related Immune Deficiency. At the time it was believed, erroneously, that AIDS was a disease that affected only (gay) men. Hence, doctors would not offer an HIV test to adult (straight) women, including Nancy Duncan and Victoria Noe herself. The idea behind it was that women “could not get AIDS.” It couldn’t be further from the truth, and it took AIDS activists (men and women) an uphill battle until the CDC finally changed the definition of AIDS to include women.

Noe comments on straight women’s “outsider” status during the first decades of the epidemic: “We were straight and women, which put us in a minority. That meant anything we did—for ourselves or other women—was an uphill battle, at least in the first decade or so. We had to fight for anything involving women and that meant we had to work together. So, [we approached it] like the famous sign outside the studio where ‘We Are The World’ was recorded directed: Check your ego at the door. Focus on the mission or get out of the way.

“Now there is a strong, very public focus on women, particularly women of color and trans women. Groups like Positive Women’s Network and leadership from women of color like Taraji P. Henson are changing the community in ways that weren’t possible thirty years ago.”

Looking back, while thinking of today’s epidemic, Noe comments that, during the eighties, she didn’t think that AIDS fundraising or AIDS activism would still need to be around. To the younger generation of activists, in particular young women activists, she says: “Figure out what interests you the most: is it educating people in your community, or raising money or advocacy? There are a lot of groups out there working on a global level, as well as a local level, so that’s a consideration as well. Do your research. If all you want to do is stuff envelopes for events, then stuff envelopes for events. No task is too small or unimportant. Be open and willing to learn. Be proud of what you do and advocate for the cause. You will find yourself being the go-to person on HIV for people you know, and that’s a good thing. Many women in the book talk about how friends and family approached them for information and help. Every one of you has unique talents that can help end the epidemic. Don’t be shy about sharing them.”

Not all of the women she researched or interviewed made it into the book, otherwise it would have been two or three times as long, and she wanted to make the book accessible in length. “So there are thousands of stories of straight women in the AIDS community yet to be told,” she concludes. “My hope for this book is that it will encourage other women to tell their stories, and maybe encourage others to join the fight.”

Learn more about Victoria Noe by visiting:

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.