Aging, Overlooked, and HIV-Positive
In the 1980s, HIV/AIDS was seen as a disease that only affected gay men. Almost 40 years later, women that lived through a crisis they weren’t considered a part of would like us to remember it—and them.
Michelle Lopez, Janice Sweeting-Saud, and Pat Shelton. Photographs by Tim Seguin.
One day in May of 1990, Michelle Lopez received a particularly bad beating from her abusive boyfriend and fled the house they shared in Brooklyn. She took the subway with her one-year-old baby swaddled in a blanket, and spotted an advert for a domestic violence hotline. Lopez called the number and was directed to a facility for battered women just five blocks away. She received a full physical and was diagnosed, alongside her daughter, with HIV. “I was devastated,” Lopez told Broadly in a recent interview.
By the time of Lopez’s diagnosis, more than 120,000 people had died from AIDS since the first case was reported by the Center for Disease Control and Prevention (CDC) in June 1981. The epidemic shook America, but was widely perceived as a moral illness—a choice. The artists of downtown New York—people like Peter Hujar, David Wojnarowicz, and Robert Mapplethorpe—became the faces of the disease for their supposed enjoyment of “drugs, dick, disco, and dish.” “The best evidence against contagion,” said Dr. James Curran in a New York Times article from 1981, ''is that no cases have been reported to date outside the homosexual community or in women.’' By the end of the decade, gay men and intravenous drug users accounted for more than 86 percent of AIDS deaths.
The disease gave an already homophobic society more tools with which to target gay men. “When it comes to preventing AIDS,” said President Ronald Reagan in 1987, after six years of lethargy with regards to the epidemic, “don’t medicine and morality teach the same lessons?” And in a debate in 1992, President H.W. Bush claimed AIDS was “one of the few diseases where behavior matters.”
The depiction of the virus as a “gay plague” created paranoia and stigma that continues to linger today, despite the vast increase in available information. It also meant that many of its victims came to fear disclosing their status. Nearly 40 years later, HIV/AIDS is still often seen as predominantly affecting gay men.
It is women, however, who now account for more than one in four HIV cases in America, tripling the proportion they made up in 1985. According to the CDC, heterosexual contact accounts for 87 percent of HIV diagnoses among women in the US. The disease also disproportionately affects women of color, who made up 61 percent of women living with HIV in 2016; while gay men still lead in HIV diagnoses, black women have a one in 49 chance of becoming HIV-positive. Even today, New York City—a hub of the original crisis—has few centers that specifically cater to women living with HIV; the city’s most well-known resources include The Gay Men’s Health Crisis (GMHC), a non-profit community-based HIV/AIDS service; The Alliance for Positive Change, for people that need housing assistance, peer support and medical care; and The Lesbian, Gay, Bisexual and Transgender Community Center, which provides HIV/AIDS services to members of those named communities. One of the only support centers solely for women is the Iris House in Harlem, which was established in 1992 by activist, writer, poet and performer Iris De La Cruz, who noticed a gap in services. America has struggled to understand HIV/AIDS as a complex and evolving challenge, leaving vulnerable populations to tackle the disease by rallying internally to protect themselves. As such, many of those on the outside continue to see its origin story, and the stigma that was born from the height of that crisis, as its present, not its past.
As an HIV-positive single mother in 1990, it was natural for then-24-year-old Lopez to be consumed with fear. She was staying in a homeless shelter as she recovered from being battered, and, as an undocumented immigrant from Trinidad, lived with the constant threat of deportation. It took a while to get her life back on track and find the care and services she needed to feel like she could, in her words, “breathe again.” Once she did, Lopez knew it was time to find her daughter’s father and disclose her diagnosis to him.
“I don't know how you’re going to handle this,” she said to him at the time. “But your daughter and myself have both tested positive for HIV.”
Lopez had assumed she was the person who’d infected him, until he replied, “Ain’t life a bitch. I’ve been living with this for so long.”
They met in 1989 and conceived their daughter soon after. “This was 28 years ago,” she recalled. “Think about it: what heterosexual man do you know that would have been so forthcoming then?”
Lopez walked away from the situation. “I could not handle myself having to deal with the fact he knew and didn’t tell me. But getting angry wasn’t going to take the virus away from me.”
As she began to heal, she started encountering other women who shared her story at the Community Healthcare Network, where she received medical care, and later on, through her job as a caseworker at GMHC.
Lopez would meet 70-year-old Janice Sweeting-Saud at an event for women living with HIV. Sweeting-Saud also contracted the virus from her partner of six years, who she had met while studying for her Bachelors at Mercy College. His health started failing in the late 80s, but he still didn’t tell her about his diagnosis, and instead insisted the rash he developed was from a spider bite. Eventually, she too became unwell and tested positive for HIV. “That’s death,” she thought then, adding, “I was in denial for a long period of time.”
Her partner died in 1989. “I feel a great sense of survivor’s guilt,” she said. “I really did love him. It was a love story.”
By the 90s, stories about heterosexual people acquiring HIV started to gain traction. In 1991, Magic Johnson announced that he had tested positive for HIV and would retire from the NBA. A year later, a film about an affluent 16-year-old named Alison Gertz, who contracted the illness after a one-night-stand, gave a new face to the crisis. She told everyone, “Even you can get it,” in a two-hour ABC special that spurred a record breaking 189,251 calls in 24 hours (mostly from women) to the Federal AIDS telephone line.
But the conversation, truncated from its genesis, struggled to be inclusive and accurately reflect the scope of the epidemic. After feeling excluded from a response to the disease that focused predominantly on white gay men, The National Coalition of Black Lesbians and Gays held their first AIDS conference in 1986 to address their community’s needs. Later that year, the Black gay activist Craig Harris stormed on stage at the American Public Health Association’s first AIDS event and screamed, “I will be heard,” after no people of color were invited to participate. Meanwhile, with a crack cocaine crisis developing, HIV infection rates started to soar among Black women, as the drug spurred increased rates of unprotected sex—a problem that mostly affected poor communities of color.
By 2004, HIV/AIDS was the leading cause of death for Black women aged 25–34 years, despite the introduction of antiviral medication in 1996, and the Ryan White grant—named after a hemophiliac child who had been infected during a blood infusion— which made HIV medication, care and support services available to the uninsured or underinsured. This is because only a quarter of women in America are in stable care and taking the medication to lower their viral count, as women diagnosed with HIV often face difficulties in accessing the information and services they need due to barriers such as sexual violence, lack of education, poverty and sexism. Plus, “few of the Ryan White Title-1-funded programs providing service to HIV-positive New Yorkers address needs to women,” wrote public advocate Betsy Gotbaum in a 2003 report about women and HIV/AIDS in the city. The report also noted that only two out of the twenty-three Ryan White-funded outpatient medical programs in New York targeted women.
Victoria Graves-Cade, an HIV-positive community liaison officer at GMHC, believes this lack is largely an economic problem, which becomes a race issue as funding for educational programs and healthcare fail to reach neighborhoods of color. According to U.S. census data, 28 percent of Black people live in poverty, which increases the risk of homelessness, substance abuse, and a dependency on sex work—high risk categories for contracting HIV. Despite this, prevention services targeting women of color are limited, leading to an HIV infection rate for women of color that is 20 times higher than that of white women.
“We’re invisible when it comes to funding, and we’re invisible when it comes to research,” Graves-Cade said. “We want to grow, we want to do activities, we want the opportunities. But we haven't been afforded them, we haven't been exposed to them, so the vicious cycle keeps happening.” With a lack of information and support, Black Americans living with HIV account for a higher percentage of new cases than any other race or ethnicity; in 2016, there were more than 4,500 Black women diagnosed with HIV, and 12,890 men—more than half of whom were gay or bisexual.
Even with the medical advances of the last two decades (the antiviral therapy and PrEP—pre-exposure prophylaxis) that mean HIV is no longer the death sentence it was in the 80s, the flaws in its initial launch into the country’s consciousness continue to weigh on those dealing with it today. In the 80s, many media sources avoided covering the epidemic, or when they did, contributed to the harmful rhetoric around it. In one of the first news reports on the crisis, NBC host Tom Brokaw blamed it on “the lifestyle of some male homosexuals.” AIDS became a punchline for everyone from comedians to actual politicians.
Sweeting-Saud and her fellow activists are still fighting the feelings that were fostered then, and linger today. There’s a lot of miseducation, she says, including in some religious communities. As a Muslim, she tries to advocate for safe sex practices without offending her mosque: “How the heck does the disease keep multiplying? How do we keep getting infected? Because we're not practicing safe sex.” She also works with clergies on the National Black Leadership Commission on AIDS in an effort to get religious entities talking about how to distribute condoms. “Even my Imam, when I suggested putting a little case in the bathroom, was like, ‘No, no, no, I can't do that.’”
This trepidation surrounding the illness is something Graves-Cade also knows all too well. In her work as a caseworker she educates people about the virus but many people, she says, won’t even touch the pamphlets or look at the information on the table. It’s like they feel that “if they touch it they're going to get something,” she explained.
Stephen Karpiak, the Associate Director for Research at the AIDS Community Research Initiative of America (ACRIA), has been researching the aging population of people living with HIV for over 15 years, and believes it remains “probably the most stigmatized disease in our memory.” That sentiment is shared by Rodolfo Chacin, a social worker at The Alliance for Positive Change who recalls clients being given plastic plates and cutlery at family gatherings for fear they would transfer HIV with their saliva, and a woman who went to a funeral only to hear people whispering about her status, warning others to be careful not to let her tears drip on them. According to the United Nations, “In roughly 35 percent of countries with data available, more than 50 percent of women and men report discriminatory attitudes towards people living with HIV.”
“We could talk about cancer all day long and everybody gets teared up and so sad,” Graves-Cade said, “and it is a sad thing. But when you talk about AIDS, that's a ‘moral disease’….gay men, drug addicts, and Black people—those are the ‘slugs of the earth,’ and it’s okay wipe them out. People still have that etched in their brain so they can't see any further than that until it starts affecting them.”
Today, about 50 percent of the total population of people with HIV in the US are over 50 years old—a number that continues to increase. And while many have been told it’s not HIV/AIDS that will kill them, they’re facing other burdens: the weight of living through trauma, social isolation, depression, and loneliness. “These people live alone and in fear,” said Karpiak. “They have high levels of depression, three-five times more than the normal rate, numbers that have never come down since the 80s until today.” This is because, he says, “only 15 percent of this population has a spouse, 70 percent live alone—they lack that support system.”
This is true of 65-year-old Patricia McNeill Shelton, who lost her partner Keith, who she had been with for 25 years, to liver cancer in 2008. “I have good friends, plus my daughters who spoil me once I arrive home,” she said during an interview in her apartment in Harlem—but much of her time is spent alone. “Loneliness and depression are some of the biggest issues for people living with HIV.”
Shelton found out her diagnosis in 1991 at the same time as Keith, and the pair were told they had two years left to live. Shelton remembers how her partner started shaking at the news. “Did you not hear what the doctor said?” he asked her. But she was in denial. “He’s speaking to you, not me,” she told him then.
The pair had contracted the virus from intravenous drug use, which she had begun with her first husband who she met at 17, and continued while she was in a relationship with Keith. After initially refuting her status, Shelton rallied, as did Ruby Garner, who learned of her positive diagnosis in 1999. Like Shelton, she “went into denial, isolation. I cried a lot.” Her husband, who was bisexual, failed to disclose his sexuality or his status to her. “I had so much fear in me that I was going to die that I decided to go and get someone to talk to. Fortunately, I found other support. From the support I went to advocacy, from advocacy to prevention.”
Garner now uses the SISTA Program to encourage women in her community in the Bronx to be more assertive when it comes to their sexual lives. “There's still so many people who are just not knowing that they can educate themselves on their behavior and sexual health,” she explained. “They're not opening their mind to the things that they should be presenting, which is sexually transmitted diseases, all of these things are running rapid, especially in the poor neighborhoods, the underserved neighborhoods.”
When Graves-Cade visited her doctor soon after her initial diagnosis in 1995, she was told she “wasn't going to be here,” she recalled, her voice shaking. “Here we are in 2018 and I saw my children graduate from elementary school, middle school, high school; I tell you it brings tears to my eyes.”
Now, Graves-Cade has an undetectable viral count, which means she could have sex without a condom with nearly no chance of passing on the disease. This is mostly due to the introduction of antiviral therapy, and the more recent addition of PrEP which, taken daily, is 99 percent effective in preventing HIV infection.
According to James Krellenstein and Peter Staley, the co-founders of PrEP4All (a petition to break the patent for Truvada, which is owned by the pharmaceutical company Gilead, which has increased the price of the drug from $6 to $1,600 a month), if used as directed, the pill is “one of the most most effective methods of preventing a viral infection ever discovered, as good as the polio vaccine, the miracle of modern medicine.”
“When you combine PrEP’s effectiveness with the discovery that people living with HIV cannot transmit the virus to others once they become undetectable, we could be on the verge of a swift end to the epidemic,” they wrote in an Op-Ed for the New York Times earlier this year. But at the moment, PrEP is mostly being marketed to gay men, or transgender women, although estimates say 38 percent of the 1.2 million people in America are women who are eligible for the drug.
In fact, using a combination of the medications available, Lopez’s HIV-positive daughter recently gave birth to a son who is negative. Yet as the disease has largely disappeared from regular public discourse, HIV-positive women of color are still slipping through the cracks, and advocates like Lopez, Graves-Cade, Shelton, Sweeting-Saud, and Gardner find themselves relying on their own stories to add to the history, and current understanding, of HIV/AIDS in America.
“I have a lot of baggage,” said Lopez. “I use the word baggage but I don't see it as baggage, this is who I am. You’ll have all these strikes against me…but I’m here and I matter.”
Correction 12/6/18: A previous version of this piece inaccurately described Pat Shelton's partner's cause of death.