After Kali Lindsey, now 27, was infected with HIV four years ago, he went to his doctor, only to get a dose of bigotry that nearly kept him from returning. “The nurse said to me, ‘Come on, you’re gay, you had to know you would get HIV one day,’ ” he says, adding that the words drowned out all the medical information the doctor doled out that day. Lindsey relays the episode as an example of the pervasive homophobia and HIV stigma black gay men face daily—even in the medical establishment. “There is so much homophobia in the black community that men who have sex with men [MSM] often live below the radar to please their family and friends and avoid violence,” he says. Fortunata Kasege, 33, meanwhile, embodies another AIDS-ravaged group: heterosexual black women. Kasege was diagnosed in 1997 during a routine screening while pregnant. (Her daughter, now 10, is negative.) “I didn’t think I was at risk,” she says. “I waited until I was 19 to even kiss a boy. I couldn’t relate to HIV prevention messages, which focused on people with certain behaviors or multiple partners.” And what of the man she believes infected her? “I trusted him,” she says.
Kasege and Lindsey’s stories are increasingly common. For more than a decade, HIV has disproportionately affected African-American MSM and heterosexual women. Facing an insufficient response from black leaders and the federal government while the media scrounges to pinpoint a culprit, these two groups often find themselves on the defensive.
Instead of joining forces they have sometimes pointed fingers at one another for fueling the epidemic among African Americans by perpetuating homophobia (straight women) or violating trust (MSM who may also have relationships with women). Recently, however, Kasege, Lindsey and other members of both demographics have started pushing to get all involved to move beyond blame and pool their efforts.
This June two dozen black men and women, all leading AIDS advocates, began doing just that. They convened in a hotel in Charlotte, North Carolina, to devise a plan to move forward—together. “We decided we need to combine our resources and [focus] our direction,” says Debra Fraser Howze, chair of the Black Women’s HIV/AIDS Network, which planned the conference along with the National Black Gay Men’s Advocacy Coalition and the National Minority AIDS Council (NMAC). “It was long overdue.”
Re-creating this meeting of the minds between gay black men’s groups and groups of black women, Lindsey and Kasege made pilgrimages to New York this past August for a POZ cover photo shoot—he on a train from Washington, DC, she on a plane from Houston. Both Lindsey and Kasege have committed their lives to fighting AIDS: Kali leads outreach training for HIV-positive black MSM and black women at the National Association of People With AIDS (NAPWA), and Fortunata works with the newly diagnosed at a Houston clinic. She has also signed up for activism work with the Campaign to End AIDS. As they posed for the photographer, they chatted about the similar obstacles they face in their AIDS work—and traded tips for living as openly HIV-positive African Americans. When the lenswoman asked them to stare into each other’s eyes, suggesting a joining of forces, Kasege playfully pushed down on the top of Lindsey’s head, lowering him to her eye level and leaning in close. Lindsey joked, “Maybe I should have a tic tac first.”
Among people living with HIV, the notion of a gay man/straight woman divide isn’t unique to African Americans. As AIDS, in its earliest years, began to evolve in the public eye from a gay man’s disease to an equal-opportunity offender, newly infected straight women of various races and ethnicities have complained of feeling dismissed by gay-male support groups. Some of these gay men, meanwhile, have maintained that they deal with additional stigma that straight women couldn’t possibly understand or relate to.
But the rates of HIV infection among black Americans make the community’s internal divide especially problematic. “Same-gender-loving men of color and black women stand alongside one another in the triple margins of society,” says Dazon Dixon Diallo, founder of Atlanta’s HIV organization SisterLove. “There is homophobia on one side and misogyny on the other and ‘My oppression is worse than yours’ kind of stuff.” African Americans constitute 12 percent of the U.S. population but 50 percent of new HIV infections, 50 percent of AIDS cases and nearly 70 percent of all new female infections. AIDS is now the leading cause of death in black women aged 25 to 34. Nationally, about 2 percent of African Americans are HIV positive, a rate on par with parts of Africa. In 2005, the Centers for Disease Control (CDC) released a study revealing that the rate of HIV among black MSM, already known to be high, was approaching a devastating majority. Some 46 percent of black MSM in five urban centers were HIV positive (compared with 21 percent of white MSM and 17 percent of Latino MSM). Black MSM were also much less likely to know it, with 67 percent reportedly undiagnosed before the study (compared with 18 percent of white MSM and 47 percent of Latino MSM).
However, the CDC’s announcement received little mainstream press as the public conversation about HIV turned not toward driving down infection rates in black MSM but toward another, more sensational distraction. Just months after the CDC study went public, best-selling African-American author Terry McMillan confronted her ex-husband, Jonathon Plummer, on The Oprah Winfrey Show. In front of a millions of viewers, she accused him of secretly sleeping with men—a phenomenon known as living on the “down low” (DL). Plummer acknowledged that he had had same-sex affairs.
Immediately, a torrent of headlines conjured the DL as a sordid culture wherein droves of black men have clandestine affairs with men and then infect their unsuspecting female partners with HIV. “The equation is women are innocent victims and black men are predators,” says Rod McCullom, a journalist who writes a popular blog, Rod 2.0: Beta, aimed at gay black men. “For white men [the down low] is just called the closet.” He adds that the DL focus harms black women, too, who often believe that if their partner is not on the DL they don’t need to worry about HIV. While the media accounts still present the link between the DL and high HIV rates in women as certain, Kevin Fenton, MD, director of the CDC’s National Center for HIV/AIDS, STD and TB Prevention, says, “The CDC believes that the DL phenomenon accounts for a small percentage of HIV infection in women in the United States.”
The polarizing popular image of the DL also does not reflect what black MSM consider their reality. For instance, black MSM who label themselves “down low” are not necessarily hiding same-sex affairs from their female partners. The majority are MSM who do not regularly have sex with women but do not identify with a gay culture they perceive as white. “The DL came about because black men didn’t want to associate with what they thought of as gay, which [to them] is very white and flamboyant with rainbow flags and leather chaps,” says Quincy LeNear, cocreator and cowriter of the DL Chronicles, a popular show on Here!, a gay-themed TV channel. “The DL is not about being deceptive to women; it is about self-protection,” says Lindsey. Black MSM are indeed much more likely than white MSM to be sexually active with members of both sexes and are only half as likely to reveal their same-sex experiences to their female partners. Yet those black MSM who do have female partners are also much more likely to use a condom every time they have sex with men. “I know openly gay men who do not have sex with women who call themselves down low,” says Ron Simmons, founder of Us Helping US, a DC-based group that established the first hotline for men on the DL. “And those that do [have sex with women] go out of their way to make sure no disease is brought back to their wives because they know it would be all over.” However, Patricia Nalls, who was diagnosed with HIV in 1987 and founded the Women’s Collective in DC, doesn’t discount the DL’s role in transmission. “We have hundreds of women infected by partners with secret lives,” she says. “Sure, society is homophobic, but what do we do until society changes? It is not an excuse to kill women.”
Amid the name-calling, tell-all books and steamy magazine stories, the black AIDS community was confronting another, ongoing issue—funding. While the CDC now dedicates half of its prevention funds to programs targeting 00minorities, the national HIV prevention budget has dwindled 17 percent since 2001, the year President Bush took office. And the Minority AIDS Initiative (MAI), established in 1999, has been flat funded or taken a slight hit annually since 2002, despite continually rising HIV rates. MAI was intended to bolster efforts to fight HIV within minority communities, but monies often go to larger AIDS organizations with vast grant-writing resources, not the smaller groups that sprang up to meet minority communities’ needs. “Some groups that were not providing services in minority communities found ways to redesign their proposals to go after the money and provide services even though they are not located in those communities,” says Congresswoman Maxine Waters (D-CA) who spearheaded the Congressional Black Caucus’ effort to pass the initiative in 1998. “Many of these groups do not have the cultural awareness or connections to provide services and provide them well.” This past April, Waters penned a letter signed by 84 other congressional representatives demanding that the president increase the MAI’s budget by 50 percent.
Staring at the limited pot, small community AIDS orgs targeting black gay men and those targeting black women often find themselves competing for funds, each sometimes claiming they are the more affected population and therefore more in need. “The conflict is a result of insufficient funding from Congress to address life-threatening health issues among African Americans,” says Frank Oldham, executive director of NAPWA. Adds Diallo: “We need to get some clarity and strategize around bigger battles.”
Those who attended the groundbreaking North Carolina meeting emerged from it dedicated to advocating together and developing a joint agenda. Howze agrees that black gay men—and black men in general—are often overlooked when national leaders and the media discuss HIV, unless they are decrying the down low. “A black woman should not walk into a room and argue for herself and not for a black gay man,” says Howze, adding that black gay men agreed to drop items addressing the gay-rights agenda from the MAI in 1999 when they were told homophobia might slow its passage. Since then, efforts have focused on black women—and their new infections have dipped slightly, while those in black gay men continue to mount. “The community owes a debt of gratitude to gay men and should push requests they are making now,” Howze says. A major focus of the coalition is energizing national black religious and political leaders, many of whom have been criticized for not addressing AIDS before the infection rates skyrocketed. National black organizations like the NAACP and Rainbow/PUSH did not speak out about HIV until 2003, when they started bringing up the topic at various conferences. While they now tackle the topic publicly, most efforts focus on women and children, not black men. “There has been a lot more outreach about HIV in black women in recent years, and it has become more socially acceptable,” says McCollum. Chandra Ford, PhD, a professor at Columbia University’s Mailman School of Public Health and the lead researcher on the report “Black Sexuality, Social Construction and Research Targeting ‘the Down Low,’” contends that it is a preexisting stigma toward black sexuality in general that caused the sluggish response and perpetuates the exclusion of black men from the HIV dialogue. “Black leaders have been resistant to being seen as not proper and wanted to push African Americans forward as part of the mainstream. They believed stigma surrounding sexuality [and HIV] hampered those efforts.” The NAACP has strengthened its presence in the AIDS community since 2003 and had its first significant discussion of HIV at its national convention last year. However, the organization still spins the epidemic as a female problem. “It had become more and more obvious that what people thought was a white gay disease was in fact a black heterosexual female disease,” says NAACP chairman Julian Bond. While black churches have historically done little to combat HIV and preachers have increased stigma and shame by linking the virus to sin, more churches are now confronting the disease. “I’m feeling the pendulum swing a little bit,” says Diallo. “There is a growing sense of stigma toward faith-based leaders who continue to ignore AIDS and continue to denigrate those among their congregation who need them most.” This past June the National Baptist Convention, the largest black religious group, talked HIV for the first time at their national conference. Hundreds of churches now reach out to The Balm in Gilead, which has led national efforts to get black churches involved in HIV education for nearly 20 years, to learn how to best serve their positive and at-risk members. “The black church is a unique entity. It sets community standards and enforces social norms,” says Makeba D’Abreu, national director of Domestic HIV Programs for Balm in Gilead. “African Americans are much more likely to listen to a minister about their health than a doctor or a nurse.”
However, most churches, like political leaders, still refuse to confront homosexuality and too often focus on Africa instead of the epidemic out and inside their own walls. Reverend Debra Hickman, founder of Sisters Together and Reaching (STAR), which works with positive women in Baltimore, says, “If you are only willing to talk about HIV in women and children you should close your doors.”
With few people talking about black MSM, many HIV programs targeted to reach them simply modify ideas developed for white gay men, without considering cultural differences. “[These organizations] alienate many black MSM,” says Cleo Manago, who founded LA’s AmASSI (African American Advocacy, Support-Services & Survival Institute), hoping to create a health care and HIV outreach model that black men and women feel fits their needs and lifestyle. “You don’t go to China to get French food.” Nearly all of the CDC’s prevention funds go to organizations using CDC-tested and -approved intervention programs. Only one of the 13 official interventions, Many Men, Many Voices, was developed specifically for gay black men, which reaches just a small percentage of at-risk black MSM.
Issues of homophobia are certainly not specific to the black gay community. But among African Americans, they are compounded by racism and poverty. In a 2003 article in the American Journal of Public Health, Emory University’s David Malebranche, MD, wrote, “Black men may adopt a ‘cool pose,’ exaggerating attributes of physical and heterosexual prowess to compensate for disempowerment in other areas [economic, for example].” He adds today, “It is the experiences predicated on race, including poverty, joblessness and sentencing practices that lead to trauma and oppression and will influence one’s mental health, lead to risky behavior, lower self-esteem and substance abuse.” Experts have long sighted poverty, and its accompanying inequalities, as the largest risk factor for HIV. Nearly a quarter of African Americans in major U.S. cities live in neighborhoods classified as extremely poor, compared to 3 percent of white people. “HIV is really associated with a number of social and economic problems, like poor access to services and a decrease in people’s knowledge and awareness,” says the CDC’s Fenton.
He adds that high incarceration rates of black men put both men and women at risk. Men are more likely to engage in risky behavior in prison and after their release. And with more black men currently incarcerated than in higher education, many black communities face a dearth of eligible men. This shortage may create a situation where women accept that their man may have multiple sex partners yet fear that demanding he use a condom will cause him to leave and choose women who won’t make those demands. In addition, many women and gay men may fear for their economic safety if they demand that a partner they rely on financially use a condom, especially if there are children involved. “The majority of the people I see at the clinic are low-income black women, and when they come here for the first time, they usually don’t have so much information about HIV and they are really afraid of someone finding out they are positive,” says Kasege, whose Houston clinic caters to the underinsured.
African Americans are as or more likely to use condoms as other groups, but they have much higher rates of STDs, like syphilis, which can greatly increase the likelihood of transmitting and being infected with HIV. And because the HIV-prevalence rate is already so high in African-American communities, any one act of unsafe sex is much more likely to put someone, man or woman, in contact with the virus. While half of infections in black men are among MSM, half are not, and little information exists about men infected through heterosexual sex or drug use. “We don’t know anything about black heterosexual men unless they are African or Caribbean,” says Malebranche. Indeed, the majority of the nearly 80 percent of positive black women infected through heterosexual sex do not know how their partner was infected. “Women need to be empowered to understand the importance of protecting themselves from HIV and not make it a man’s job to do it,” says Manago. AIDS activist Cherrell Edwards, 23, agrees. She was diagnosed in 2004, just after ending a three-year relationship she had believed was monogamous. “I know I was not HIV positive prior to the relationship,” Edwards says. “I know who I got the virus from,” adding that she believes that her health was her own responsibility. “I don’t know what he did when I wasn’t around, but I do know the risk factor came when I decided to have unprotected sex.”
As for expanding public awareness and education, most African Americans report that the media is their primary source of HIV education. Stories about HIV in the American media have steadily dwindled since the ’90s, but in the black media there has been a steady rise. Phill Wilson and the Black AIDS Institute (BAI), which he directs, are hoping to improve the content and impact of these stories. At last year’s International AIDS Conference in Toronto, BAI hosted a roundtable for black media with reps from BET to the Washington Post. Plus, the organization hosts regular training sessions for journalists and sends out massive e-mail blasts with top HIV stories. “More black journalists now understand the magnitude of HIV in black America,” he says. LeNear, meanwhile, says that black entertainers need to promote sexual responsibility all the time, not just in AIDS-specific programming. “When A Different World was on the air, all of the black kids in the ’hood wanted to go to college and be like Dwayne Wayne,” he says. “Now there are not as many positive images and ‘Smack ’em up, rub ’em down, throw ’em on the floor’ subconsciously supports sexual irresponsibility. ”
In 2004, when the two Vice Presidential candidates were asked about HIV in black women, each, seemingly baffled and unaware of the crisis, stammered. Nationally, awareness about HIV in African Americans has increased over the past several years—as has the number and influence of people and groups speaking out to combat it. There is hope that the media focus surrounding the upcoming election year could help force the issue into the spotlight—and onto candidates’ platforms. This June, Democratic Presidential candidate Sen. Hillary Clinton (D-NY) received a standing ovation during a debate at Howard University when she stated, “If HIV/AIDS were the leading cause of death in white women 25 to 34 there would be an outraged outcry in this country.” This is a reality Simmons recognized long ago. “In 2005 those stats were released and there was no outcry,” he says. “We have realized that unless we advocate and lobby for ourselves, nothing will be done.”
Fortunata Kasege agrees, adding, “It’s your responsibility to protect yourself.” Back in New York, as she and Kali Lindsey sat shoulder to shoulder, sifting through the cover-shoot images of the two of them sitting side by side, he smiled and said with a laugh, “It’s like they’re our wedding photos.” And they vow to make the honeymoon last.