When Dorothy Wooten was told she was HIV-positive, her doctor looked her in the eye and predicted that she’d be dead within two years. That was 1987. Now 71, Wooten is a member of The Divas, a support group for middle-aged and elderly women who are living with the virus. The group was started by Iris House, a Harlem-based social service and advocacy organization for people with HIV/AIDS.
“For the first few years after my diagnosis I thought of HIV as a death sentence,” Wooten begins. “Then I realized I could live with the virus, that it was not going to be my conqueror.” Wooten speaks matter-of-factly and her no-nonsense manner has led her to become one of The Divas’ most active community educators. “I teach the young people around me that HIV/AIDS is not a game,” she continues. “They need to use condoms and listen to older people who have learned how to stay healthy.”
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Cynthia Taylor, another Diva, nods enthusiastically as Wooten speaks. Her earrings – large gold discs with the word SEXY on them – jingle as she zeroes in on her participation in the program. “Joining the Divas in 2002 woke me up,” she says. “Death had knocked on my door. It taught me to care for myself first and then to reach out and listen to other women.” What’s more, Taylor not only credits The Divas with educating her about the virus, but also notes that group members taught her to adhere to a treatment regimen that includes new, highly effective, antiretroviral medications. Other topics – from menopause to diabetes to dating post-diagnosis – give The Divas ample fodder for ongoing discussion and sisterhood.
Having a place to get concrete information and support is imperative for ever-increasing numbers of HIV-positive women. According to the Kaiser Family Foundation (KFF), more than 290,000 US women have the virus and nearly a quarter of all newly diagnosed cases – 23 percent – occur among women and girls. Most contracted the illness through heterosexual sex – anal or vaginal – or through the use of contaminated needles. The Foundation further confirms that women of color are particularly at risk: 57 percent of the newly diagnosed are African-American; 18 percent are Latina. And they’re often young. KFF reports that 39 percent are between the ages of 13 and 29, with those aged 20-24 claiming the highest number of diagnoses of any age group.
“Right now in New York City, one of every three people living with HIV/AIDS is a woman,” says Marjorie Hill, executive director of Gay Men’s Health Crisis (GMHC), one of the country’s best-known service and advocacy organizations. Founded in 1982, the group places community education and fighting stigma high on its agenda. “Stigma around HIV colors everything about the virus,” Hill says. “Part of it is that when it started it was presumed to be a sexually transmitted gay disease. Americans don’t talk about sex, so, if a disease is connected to sexual behavior, there’s silence and you can’t do education in silence. For women, the stereotype is that if they have HIV, they must have had indiscriminate sex, be a prostitute, or be an IV drug user who brought this on herself.” In actual fact, advocates are quick to point out that most women get the virus from their husbands or long-term boyfriends – and typically don’t suspect infection until their partner becomes visibly ill.
Nonetheless, Hill notes that assumptions about promiscuity or substance abuse are directly related to women’s reluctance to tell others that they’re infected. Sometimes the issue is safety. A study reported in The San Francisco Chronicle on March 23 offers stark facts: 60 percent of HIV-positive women have experienced sexual abuse and 55 percent have experienced domestic violence.
Staff at GMHC, Iris House, and other advocacy programs know that rape and battering have a discernible impact on who contracts the virus and how they deal with it – if they even get tested – since those who are subjected to gender-based violence, poverty and social instability are less likely to comply with treatment protocols than those whose lives are stable. In addition, a lack of social supports adversely affects medical compliance. Fear that they’ll lose custody of their children also enters the mix.
“Our clients often have to prioritize what needs to be dealt with first,” says Robin Wilder, director of supportive services at Iris House. “They need an income, housing, and food before they can deal with other concerns, even if the other concerns are taking care of their health or getting access to healthcare for an acute condition.”
Indeed, thirty years into the pandemic, the collision of race, class and gender remains central to which women contract the virus. In fact, women who fear being assaulted or who are economically dependent on a partner rarely have the leverage to negotiate safer sex. Poz Magazine reports that American women who experience trauma are four times more likely to have unsafe sex and four times more likely to experience treatment failure than their peers.
“If you look at the hot-spots for HIV, they are the areas with high poverty, high rates of incarceration, and high drop-out rates,” says Ingrid Floyd, executive director of Iris House. Women who exchange sex for money or drugs are especially vulnerable.
Factor in prevalent misinformation about what HIV/AIDS is – and isn’t – and you have a scenario where fear and bias can flourish. GMHC’s Hill runs a weekly support group for women who are longtime survivors of the virus. “One woman has kept her infection a secret from her sisters for 18 years because she knows that her sisters won’t let her nieces and nephews eat at her house if she discloses to them,” Hill explains. “In another case, a group member isn’t allowed to hold her grandchild because the child’s mother believes that her son will get HIV if grandma touches him. Other clients tell us that they prefer to eat holiday meals at GMHC, away from their families, because their relatives still give them paper plates to eat on.”
These slaps in the face – and the still-pervasive belief that good, moral women don’t get HIV – continue to impact disclosure, testing and medical compliance. Ingrid Floyd of Iris House says that helping women decide who to tell, and when, is key. “Too many women feel this huge burden, that they have to tell everyone, but that isn’t the case,” she says. “It’s best if they can tell people in their household so that if they need to go to the hospital, they will have a support system. It also helps them adhere to their medication schedule if they can be open, and not have to hide their pills or make up a story about where they’re going when they have a doctor’s appointment. On the other hand, there are people they don’t need to disclose to.”
In the end, it comes down to empowerment. The cliché tells us that knowledge is power – and it is. “Knowing one’s HIV status is of primary importance,” says Hill. “The single most important thing a woman can do for herself is to get tested because the earlier you detect the virus, the better the prognosis.” But empowerment also means helping women gain the skills they need to become self-sufficient. “We know that HIV positive women in our GED classes and job training program have better medication adherence and more ease in negotiating safer sex,” she continues. “At first we didn’t understand why this was true, but then we realized, of course, if someone feels good about who she is and feels valued as a person, she is better able to say ‘no way’ to her partners if they don’t want to practice safer sex.”
The federal Centers for Disease Control agree that women should know their status – and get early care if they test positive. Toward that end, in March, they launched a pilot program targeted to African-American females in ten mid-sized cities. “Take charge. Take the Test,” the ads begin. “You know him. But you can’t know everything,” reads one. “You feel as if you’ve known him forever, but that doesn’t mean you know everything. Get a free HIV test,” says another. The ads are up in Atlanta, Chicago, Detroit, Fort Lauderdale, Houston, Memphis, Newark, Hyattsville and Saint Louis and will likely go up in other cities later this year.
Meanwhile, countless underfunded service and advocacy groups throughout the US continue to work tirelessly, offering counseling, testing and support to women, girls, and families affected by HIV/AIDS. They know how much remains to be done – both to care for those who are infected and to educate communities about safer sex. In addition, new developments have changed the face of AIDS and advocates are frequently called upon to advise young HIV-positive women about pregnancy risks, pre-exposure prophylaxis drugs and continual scientific breakthroughs.
“Twenty years ago people were passing away quickly and had to manage 20 or 30 pills a day,” says Robin Wilder of Iris House. “Now people are living longer, taking fewer, safer, medications, and are able to go out and do things. They’re able to take control of their lives.”
That said, Diva Wooten remains circumspect. “Remember, people still die from AIDS,” she reminds me as we’re saying goodbye. “The crisis is by no means over. We have to find a cure.”