No More Silence

The stories of how Joann Montes and Betsy Luz Correa were each infected with HIV share the unsettling similarities that bind the experiences of so many Latinas living in the United States with the virus. During the 1990s each of these women married a fellow Latino who hid from her that he was HIV-positive. Montes's husband was a recovering injection-drug user. Correa married a man who she later learned was covering up his true sexual orientation in addition to his serostatus. Both waited until their wedding nights to become intimate with their husbands. Both learned eventually that they'd contracted HIV. Each of these two women is proud of her culture, yet each also says there is something rotten in the state of the Latino community when it comes to HIV. While they make up 13% of the U.S. female population, Latinas account for about 16% of AIDS cases among women in this country, and they carry the virus at a rate five times that of white women (although only a quarter that of black women). The disease is the fifth leading cause of death among Latinas between the ages of 25 and 44. Despite these off-balance figures, Latinas make up a notably silent class of the U.S. population of HIVers. Many say the very culture of female submissiveness-known in Spanish as marianismo-that can hamper Latinas' ability to protect themselves against HIV transmission also often keeps them hidden beneath a veil of shame once they are infected. In the early part of the decade, Montes, who is now 45 and working in HIV advocacy at the Ruth M. Rostein CORE Center in Chicago, began reaching out in her community with the hope of connecting with other women like her. "They were nowhere to be found," she recalls. "I was like, I know I'm not the only one dealing with this disease." Her attempts to start a support group for HIV-positive Latinas in Chicago failed miserably. She says, "No one wanted to join the group." A lay minister herself, Montes sought support from her longtime pastor, who was also Latino, and met with him to disclose that she was living with HIV. "He just had this blank stare on his face," she recalls. "The first thing that came out of his mouth is, 'Did you have sex with Pedro before you got married?'" He was as dismissive as he was judgmental. "_'Well, we'll pray for you,'_" she recalls her pastor saying. "And he sent me on my merry way. I was devastated." Correa, a 42-year-old who lives in Wethersfield, Conn., is currently on medical disability from a master's program in psychology. She is a longtime activist, outspoken about causes like women's, gay and lesbian, and animal rights. In her words, she has "empathy, in general, for all living things," including for her late husband, who she says she imagines must've suffered terribly from the effects of homophobia in his native Colombia. Despite her outspoken nature, 10 years would pass before she broke her own silence about living with the virus. "I'm here to make sure that people realize that this is the face of HIV," she says today, "and there is nothing to fear and nothing to be ashamed of." Raised a Catholic but "now a nonbeliever," she says, "We need to challenge the church, get rid of all the dogma and all that crap that keeps us with this ignorance-is-bliss attitude." Montes is determined to challenge her religion from the inside. She was able to find a new pastor who has shown his support for her, and she has since reconciled with the previous pastor who disappointed her so. And she happily reports that he has changed his views. "That makes me believe that what he needed at the time was education," she says. "He wasn't informed." She now also works with a Chicago-based group called Oasis to develop training for ministries that respond to HIV. She's spurred by the memory of a woman she met at a local heath fair who told her what is a common attitude among religious Latinas: "I'll only get sick if God wants me to. I am safe: I'm married." Marriage proves a porous shield for many Latinas. Heterosexual intercourse accounts for 71% of HIV cases among the population, which health researchers believe indicates Latinas may be partly unaware that their partners have engaged in risky behaviors and partly too fearful to challenge the culture of machismo-in which the man has the final say-so. "A lot of our Latina women are disempowered," says Melissa Lopez, a mental health specialist at AIDS Project Los Angeles. "It's hard for them to demand from their partner to use condoms. It's hard for them to question their partners sometimes and talk about other sexual partnerships." A 2003 report, published in the journal AIDS Care, found that 26% of Latino men who have sex with men reported also having sex with women, compared to 13% of white men in the same category and 34% of similar black men. This indicates that the "down low" phenomenon, or bugarrones, which became such a hot-and hotly debated-topic among African-Americans in part because of this study, might be a significant source of HIV transmission among Latinas as well. "Even though every effort is being made to bring the word to them, people are still feeling like it's not going to happen to them," says Yolanda Rodriguez-Escobar, who is the founder and executive director of Mujeres Unidas Contra El SIDA (Women United Against AIDS) in San Antonio. "Our message has changed quite a bit since the beginning. Not just to say, 'Here are the risk factors.' Now we're focused more on, 'You really need to know your partner's status.'" Her organization gets the word out in part through a successful program called the Pl'ticas (Talk) Project, in which women gather at a friend or relative's home for a Tupperware-party-style event geared around health promotion. Antonio Urbina, MD, the medical director of education and training at St. Vincent's Comprehensive HIV Center in New York City as well as a contributing editor for HIV Plus, says his Latina patients are often too fearful to disclose their diagnosis with their partners. He says this creates a particularly difficult ethical challenge for his team when treating pregnant patients. The shame and isolation can also cause women to miss appointments, he adds, or fail to adhere properly to their anti-HIV medications. Russelle Miller-Hill, a reproductive-health worker in the methadone maintenance program at the Albert Einstein College of Medicine in the Bronx, N.Y., says she does her best to work around her HIV-positive Latina clients' tendency to defer all decisions to their male partners. This submissive attitude is especially hard to negotiate with, she says, when there may be domestic violence at play. She tries her best to build a solid relationship with each woman and-while trying to involve the man the best she can-to also find moments to make decisions about care when the man isn't around. Latinas, by all accounts, are singularly devoted to family life and take tremendous pride in the care they give. Unfortunately, this often leaves their own health at the bottom of the list, especially if there is a struggle simply to get food on the table. "In Latino culture, men work eight hours, and then they go home and they sit in front of the TV," says Montes. "Women work eight hours...12 hours, and then they come home and they cook dinner, they take care of the children, bathe the children, and then be a fierce lover to the husband. That is expected of us. It makes us uniquely strong. We empower ourselves to take care of our families. I wish that we empowered ourselves to take care of ourselves a little bit more." Lopez repeats a common refrain about the logical incentive of self-care: "One of the things I try to do is to teach them how, by taking care of themselves, they are able to take care of their families." Evidence of this lack of personal concern can be seen in the fact that Latinas tend to test very late in their HIV infection. One study of Latinas in the Los Angeles County health system found that 76% received their HIV and AIDS diagnoses less than six months apart, indicating that on average they may be infected eight to 10 years before learning of their serostatus. They also largely lack proper health insurance upon receiving their diagnosis. Lopez says that another major obstacle to care may be a lack of culturally competent services for the diversity among Latinas. For example, she says, sexually provocative HIV education images are likely to offend more conservative-minded women. Furthermore, she points out, clinics and outreach programs don't need only fluent Spanish speakers but also those who have the Spanish vocabulary with which to discuss complex medical topics. She challenges health providers to be vigilant communicators and not to take their word for it when Latinas with little English say they understand what they've been told. "Don't just take the 'yes,'" Lopez advises. "They may just be conditioned to say that because it's polite." Naturally, immigration issues and fear of deportation also pose huge barriers to the access of HIV testing and care for undocumented Latinas. Lopez says that many of her clients are fearful of the Immigration and Customs Enforcement trucks that patrol certain Latino neighborhoods in Los Angeles. Women will cancel appointments because they're too afraid to leave their houses when they see one of these. Despite these many challenges-or perhaps because of them-Latinas are remarkably resilient. "They are survivors," says Lopez. "A lot of these women come from countries that have been through incredible turmoil. I think their connection to family empowers them and makes them feel really connected." Religion, says Montes, is a double-edged sword in her community. "Our faith puts us at risk," she says, "because it makes us not heed the fact that we're at risk for diseases. But our faith also makes us strong to believe that tomorrow will come again." "We're not going to be silent anymore," Correa insists, though. "We're going to rock the boat. And we're not going to take this lying down anymore. No pun intended."