Authors Celeste Watkins-Hayes and Victoria Noe are fighting to keep the AIDS epidemic in the national dialogue.
Authors Celeste Watkins-Hayes and Victoria Noe are fighting to keep the AIDS epidemic in the national dialogue. (Chris Sweda/Chicago Tribune)
Celeste Watkins-Hayes and Victoria Noe were strangers to one another, each hundreds of miles from home, when they found themselves at neighboring booths at September’s U.S. Conference on AIDS in Washington, D.C.
“Here we are in this mix of activists and advocates and policymakers and people from the private sector,” Watkins-Hayes said. “Out of thousands of people we managed to be in adjacent booths, both from the city of Chicago. I just think it was kismet that we were brought together.”
Both women were at the conference signing their new books. Watkins-Hayes, a professor of sociology and African American studies at Northwestern University, is the author of “Remaking A Life: How Women Living With HIV/AIDS Confront Inequality.” Noe, a longtime activist and author, wrote “Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community.” Both books focus on the lives of women within the AIDS movement — as activists, fundraisers, healers and those living with HIV.
At a time when AIDS has fallen off many people’s radar, Noe and Watkins-Hayes are fighting to keep the epidemic in the national dialogue. Their books arrive shortly after Chicagoan Rebecca Makkai’s “The Great Believers,” a 2018 novel about AIDS in 1980s Chicago.
“Chicago is really becoming a hub of writers on the HIV epidemic,” Watkins-Hayes said.
“Remaking a Life” is based on interviews with more than 100 Chicago women living with HIV from 2005 to 2015 and explores the ways racial and class inequities are intertwined with the disease. Among all U.S. women with HIV diagnoses in 2015, Watkins-Hayes writes, 61% were African American.
“To be clear,” Watkins-Hayes writes, “racism has been a pernicious catalyst in the AIDS epidemic. From a policy standpoint, the weak public health response to the needs of black and brown communities undermined the capacity to build a strong HIV prevention and treatment infrastructure from the early years of the epidemic.”
Her reporting, she said, showed her how inequality shaped women’s ability to protect themselves from HIV transmission. Over and over, she met women who had limited access to health care, women who were grappling with poverty, women who were suffering the aftermath of childhood sexual trauma.
Noe’s book focuses on the role of straight women — including herself — who entered the HIV community in the ’80s as staff or volunteers. The women she profiles, she said, represent thousands more whose stories have gone largely untold.
“Of course, not every straight woman hurried to the side of a person who had just been diagnosed,” Noe writes. “Some women initially rejected the infected. Only after facing down their own fears would they come around. Some never did. To imply that all straight women rushed in with nonjudgmental support is to ignore the damage done by women like First Lady Nancy Reagan.”
But the stories of those who were there, Noe said, help complete a portrait of the early days of the HIV/AIDS landscape that is often told by, and about, men.
“In the HIV community, a lot of reflection is going on right now,” Noe said. “People are looking for meaning in what they went through and what they witnessed, whether they’re HIV positive or HIV negative.”
An estimated 1.1 million people in the United States have HIV, according to the Centers for Disease Control and Prevention, including about 162,500 people who are unaware of their status. Young people ages 13 to 24 made up 21% of new HIV diagnoses in 2017, according to the CDC, but research indicates the risks and realities remain far from young people’s minds.
“It’s not even on young people’s radar,” Carlos Malvestutto, medical director of the Family AIDS Clinic and Education Services (FACES) program at Nationwide Children’s Hospital, told Pediatrics Nationwide. “They didn’t live through the 1980s and 1990s. They haven’t lost anyone to AIDS. And no one is talking about it.”
That’s not limited to young people.
Noe said she attended an author fair at a public library in Princeton, Ill., when a man who appeared to be in his 50s approached her table.
“He said, ‘So, whatever happened to AIDS?’” Noe recalled.
Since their chance encounter in Washington, D.C., Noe and Watkins-Hayes have been teaming up to help promote each other’s books and share each other’s communities. They’re planning a joint appearance in March, Women’s History Month, where they hope to bring together a broad spectrum of Chicagoans for a moderated discussion on HIV and AIDS, followed by a book signing.
“What I didn’t expect to find in my research,” Watkins-Hayes said, “was the way women talk about the significance of the HIV community in helping them move from what I call ‘dying from’ to ‘living with’ to ‘thriving despite.’ Viki’s book really communicates where that safety net comes from and how women have helped develop that strong social support network.”
“We need books like Celeste’s because you don’t just get facts, you get stories,” Noe said. “You meet these women, and that’s how lives and minds change.”
Watkins-Hayes closes her book with a plea.
“In order for us to continue to make the gains that will eradicate this devastating and costly epidemic,” she writes, “we must stay vigilant in the fight.”