The emergence of the AIDS epidemic marked yet another moment in history in which African American women were treated with little respect. While researchers worked to understand the disease, they focused their attention on the homosexual male community and conducted few studies on how AIDS affected the female body. Take the issue of race and gender and place it inside the framework of AIDS and the result is underrepresented black women.
Universal struggles of HIV+ women include; a lack of community and an emphasis on the female as the caregiver. But the average black woman is facing discrimination based on her place as a racial minority as well as the misunderstood female. I will first discuss the collective problems of HIV+ women and then examine the experiences of black women.
The sick as caretakers
Remnants of the cult of domesticity and male breadwinner model, women of the 1980s and 1990s were often the sole caretaker of their families. After the initial shock upon diagnosis, many women describe family members who expected them to return to the same routine of housewife. Desirèe Ciambrone describes the ways in which this expectation affected women,
Women who are ill are often expected to care for others while simultaneously tending to their own health, which places many women in position of triple jeopardy; that is, they are dealing with their own infection, worrying about possible infection of children, as well as looking after other people with HIV/AIDS. Having primary responsibility for household labor and child care often leaves HIV-positive women with little time to engage in self care activities (e.g., getting proper rest and exercise), and may prevent them from seeking medical treatment (11).
It seems that women infected with HIV are not just serving a second shift, but instead a third. Not only are they physically exhausted, but also still required to care for their family and home. One woman tells of her depression and the reaction of her fiancè, “’He comes home from work and says, ‘What’d you do, sleep all day now?’ Or he’ll say to me, ‘It’s all in your head. You know, it’s not real.’..I’m like, ‘My doctors are wrong? You’re a doctor?’” (Ciambrone 115). Many women in Ciambrone’s narrative depict their family members and partners as unsupportive and instead frustrated by the loss of their caregivers.
Quite a few women refer to their children as their motivation to remain alive. They did not dream of the specifics of their children’s futures, but instead simply longed to be present. Sheila says, “’My kids are my strength, they do help me cope’” (Ciambrone 111). Others describe the presence of children as a somewhat bothersome distraction, “’I don’t have time to sit and think about things, you know? Either they’re fighting, or this one is bothering the other one. It’s always something, so I don’t have—I haven’t had really time to [think about my illness]’” (Ciambrone 111). Women struggled to maintain their personal lives as wives and mothers, while still tending to their own ailments.
Lack of a HIV+ female community
AIDS surfaced in the gay, male community and garnered most of the liberal support, leaving women as unfortunate outliers. Women complained about both formal and informal support from their community. Pat describes her frustrations, “’They do more for gay men than they do for women… You never hear anything about gay women, nothin’ for them, or even straight women. I guess I wouldn’t mind bein’ a man ‘cause I could get more help, you know?’” (Ciambrone 58). Women, ignored by family, witnessed communities that embraced gay men while leaving HIV+ women to cope with the pain alone.
Women were not exempt from being labeled deviants and deserving of the virus, but they did not have the support systems like the gay men. Like the larger demographic of AIDS victims, those who contracted the disease from needle sharing received the smallest amount of sympathy.
HIV/AIDS in black communities
AIDS first appeared in the homosexual male community, but has quick invaded the minority populations. Among 2,942 men who have sex with men tested in 2001, 32% of blacks tested positive, with only 7% of whites testing positive (Loue, Pike 254). The number of HIV+ women is just as concerning, “Over a thirteen year period the proportion of AIDS cases among women has more than tripled from 7 percent in 1985 to 23 percent in 1999” (Ciambrone 10). These infected women tend to be IV drug users, non-white, and poor. Ciambrone suggests that black women may suffer from a lack of support due to domestic violence and racial discrimination in the health field (11). Take with the challenges based on race, the issues of all HIV+ women, and the black experience is far more unfortunate.
Research studies with minority populations
The Tuskegee Syphilis Study and the story of Henrietta Lacks marked an end of an era in medical research on minorities. The discussion regarding minority research in the 1980s and 1990s focused on representing minority populations in the studies. Loue and Pike argue that AIDS brought attention to the health of some of America’s minorities. Case Studies in Ethics and HIV Research points out the relationship between LGBTQ groups and racial minorities,
All suffer real and often legally-supported discrimination, rejected, restricted employment and educational opportunities, and abuse at the hands of social institutions—including medical and behavioral institutions. All have endured with some inter-racial variation epidemic—burdens that have, in a number of cases, only served to compound preexisting burdens that are themselves also the result of health discrepancies (Loue, Pike 246).
The nature of minority research shifted from that of discrimination based on participation to discrimination based on underrepresentation. Loue and Pike suggest that major problems facing minorities are “inadequate research and medical institution understanding of minority communities and intra-community diversities” as well as “disconnectedness between research and interventions focused on HIV/AIDS, and research and interventions focused on an array of other individual and collective challenges facing minority communities in the U.S.” (Loue, Pike 249).
AIDS and the research that followed is a nice bookend to the era of minority testing, but marks a continuation of the lack of representation of American minorities. Women were excluded from HIV/AIDS education because the impact of the virus on females was overlooked in the early stages of investigation. Black women, along with black men, were omitted from the discussion because of their race and prejudices regarding the nature of morality and deviancy. While gay men certainly were not considered moral, the beginning stages of the virus affected white homosexuals. The hierarchies of minorities in America became evident when race and gender became a determining factor in who was worthy of sympathy and support. This system placed black females at the bottom of that list.
Ciambrone, Desirèe. The Women’s Experiences with HIV/AIDS: Mending Fractured Selves. New York: Haworth Press, 2003
Loue, Sana and Earl C. Pike. Case Studies in Ethics and HIV Research. Cleveland: Springer Science, 20