Words of Fire

by Beverly Guy-Sheftall

  First, the article stated the grim statistics; in New York City in August 1987 there were 50,000 women infected with HIV; eighty percent were black and Hispanic. The first paragraph of the article announced:They are the primary carriers of the disease from the world of drug abuse to the larger community, making their education an increasingly urgent task.

  The identification of women as “carriers” was stated without supporting scientific data. Perhaps the writer was unaware of the scientific data but, by 1987, studies showed that women were at greater risk of infection from infected men than the other way around. Or, in the rhetoric of the medical literature, female to male transmission of HIV is “less efficient.”8 The women in this article are portrayed as passive victims in abusive relationships with men who are most often drug abusers. Their lives are described as “unruly,” “chaotic,” “despairing.” The most demeaning attack is made on African American women who, through HIV positive, become pregnant and choose to continue their pregnancies rather than have an abortion. Gross reported that... Women explain that they want to have another child to leave something behind in the face of death, that they view a fifty-fifty chance of having a healthy baby acceptable odds. But counselors say these explanations usually do not surface until a pregnancy has proceeded past the point when abortion is possible. They wind up having babies more by default than intent.9

  The behaviors highlighted by these experts’ comments, suggest that these African American women are not responsible to themselves or to the children they bear. The prevalence of such attitudes is attested to by reports from women of color who are HIV positive, who are, in many cities, being subjected to hostility from hospital staff and counselors because they want to have their babies. Gross, like other writers, portrays African American women largely from the perspective of neonatal infection, which implies that the women themselves are not patients but only vectors of disease, or put another way, the risk factor for their children.

  The article goes on to quote a social worker who commented that from her experience running a counseling group, only the middle-class women in her group expressed concern about their health. “Among the poorest women, who are often indifferent or ignorant about health care, there is no demonstrated concern about their physical well-being . . .” The sense of powerlessness that African American women who are HIV positive experience is used to emphasize their irresponsibility. Such comments leave unexamined the personal and economic difficulties that these women face in their attempts to get access to good health care and counseling. Gross does not present a portrait of women who are fighting a disease, and the reader is not drawn to be sympathetic toward them. Instead, it is a portrait of the by now classic stereotype of black women who are unstable and irresponsible, even more so because they now carry a deadly disease. They are blamed for not having control over their lives.

  The article does not report that these women are being diagnosed at later stages in the disease. We are not told about the different opportunistic infections in women that could possibly mask early diagnosis. We are not told how many of these women have lost their homes and custody of children when their HIV status is made known, nor that their opportunities for anonymous testing, good counseling, or access to drug treatment programs are severely limited. There have now been recommendations to implement testing of all pregnant women. African American women are likely to become the first nonincarcerated, civilian United States citizens to confront mass screening for HIV. And I would suggest, in the wake of this recommendation, there is also the possibility that some might call for mandatory abortions or, given that Medicaid monies are not allowed to cover abortion in most states, preemptive sterilization for these same HIV-INFECTED pregnant women.

  QUICK: NAME ONE BLACK WOMAN WITH AIDS

  Gross’s article is not atypical. I have read few stories in the mainstream media detailing the emotional trauma that HIV infection causes for African American women; nothing about survival strategies; no stories of daily life —how living with AIDS affects jobs, family relationships, or friendships. On Sunday, June 17, 1990, the New York Times ran a full page of profiles of black and white gay people living with AIDS. One woman was interviewed though no picture of her was printed. She said, “You want so much for someone to hold you, and no one wants to touch you.” Her response only hints at the emotional trauma such women are facing. So many questions remain unasked in such accounts—how are these women dealing with the stigma associated with a disease that is perceived to be associated largely with white gay males? How are they dealing with the loss of their children or how are they preparing their children for their own impending deaths? What is happening to women who don’t have children or extended families? Perhaps the problem is that, to date, no “famous” black woman has died of AIDS for the media to create a symbol that would garner support for African American women with the disease.

  The tactics used by the media to make the American public aware of the various dimensions of the AIDS epidemic have been troubling. One tactic has been to take one person’s story and transform it into a symbol for some particular aspect of the epidemic that needs to be addressed. For example, Ryan White epitomized the “innocent” child, made a victim of the bigoted attitudes of parents who barred him from his local school and town. White’s story became the vehicle to educate the public about the small risk of AIDS’s being transmitted casually and the plight of “innocent” children who are stigmatized because of their infection. Similarly, the story of Kimberly Bergalis, alleged to have been infected by her dentist, has been the centerpiece of the debate over whether there should be restrictions on dentists, physicians, and health care workers who are HIV positive. White gay male artists, entertainers, and writers suffering and dying from AIDS are featured in articles that eloquently reveal to the larger heterosexual world the emotional toll that AIDS has taken in gay communities while breaking down stereotypes about gay life. These articles serve to reveal the junctures and disjunctures in our beliefs about sexuality and sexual practices as well as the anxieties in American life about sex and morality.

  In each of these cases, in some way the media has used such symbols to subtly urge the public to embrace people with AIDS. African American women with AIDS are constantly represented with respect to drug use—either their own or their partner’s. They are largely poor or working class. They are single mothers. Media portrayals of these people with AIDS allude to the spectre of drug abuse and uncontrolled sexuality coupled with welfare “dependency” and irresponsibility. Such allusions undermine any representations of African American women with AIDS that would allow them to be embraced by the larger public.

  Public health educators have been challenged to deal with the issue of cultural sensitivity in AIDS prevention and education material, and thus have created advertising campaigns displaying African American women in a positive light. This advertising often presents nameless figures who may look more like the average black woman, and thus encourage other African American women to identify with the ads’ message on AIDS prevention; but these ads may not be able to elevate the threat AIDS poses to African American women, or the plight of those already infected, to the levels of recognition that could dethrone the more prevalent negative imagery.

  C. J.: VENGEFUL BLACK WOMAN

  Unfortunately, unless active criticism of current media images of African American women with AIDS is made, other more negative imagery may arise as the numbers rise within African American communities. A case in point is the recent article in the New York Times (this story was also covered on television) on the case of a black woman with AIDS in Dallas, who is reportedly, “... trying to spread the virus out of revenge on the man who infected her.”10 While admitting that the veracity of the story is in question, the article reports that a woman known only by the initials “C. J.” apparently first wrote to Ebony magazine in September, 1991, that “. . . since contracting the AIDS virus she had become compulsively promiscuous, frequently picking up men in ni
ghtclubs.” She is quoted as writing, “I feel if I have to die of a horrible disease I won’t go alone.”11 This same woman, or someone claiming to be the same woman, is reported to have called a local Dallas black radio show telling of meeting men, some of them married, and having unprotected sex with them in “revenge.”12 She is further reported to have said, “I blame it on men, period . . . I’m doing it to all the men because it was a man that gave it to me.”13 It is notable that the radio host is said to have encouraged the woman to seek counseling. The episode apparently has resulted in an increased number of heterosexual men in the Dallas area seeking information about AIDS. Public health experts in that city commented on this as a positive aspect of a sad story: “This woman’s announcement has been the most powerful reinforcement of that message I’ve ever seen in Dallas.” The more general comments about C. J.’s story in the article are from men who assert that the incident has changed people’s attitudes about high-risk behavior, while another characterizes C. J.’s behavior as “serial killing.”

  As I read this article, I was struck by how quickly C. J. leaves the narrative. The story ultimately does not center around her plight, but only on the threat she poses to heterosexual men. There are no comments reported from African American women. Little of the commentary reported suggests that public discussion of the trauma AIDS engenders for women who are infected occurred. But I also see as a subtext in this article the image invoked by Gross and others of the woman as the vector of infection to men—in this case, not the prostitute or the out-of-control drug abuser, but the dangerous, scorned woman, consciously exacting her revenge against men (and this before Anita Hill). Men are portrayed to be at risk by the reckless behavior of this woman. Attention is turned away from the circumstances that might drive a woman to such vengeful behavior. In the absence of a discussion of those circumstances, little is revealed to the reader about the complexity of male-female relationships in the African American communities, and specifically the tensions in those relationships that are coming to light as AIDS spreads in these communities.

  Facts about the transmission of HIV in African American communities are obscured as well. For example, African American men are disproportionately infected with AIDS, and most African American women have sexual relationships with men of their race. In the absence of the factor of female drug use, this means that these women are at greater risk because of the behaviors of men. C. J.’s behavior, regardless of whether or not her story is true, is believable because it can be read as the rage of many heterosexual African American women about the lack of power they feel in their relationships with men. That such rage exists is no secret in the black community as the debates over Shaharazad Ali’s book make clear.14 C. J.’s story also reveals the way in which infidelity, betrayal, and loneliness have shaped the emotional landscape many African American women live with. As AIDS spreads in African American communities, more explosive reactions can be expected. It is hardly conceivable that the white-dominated media will portray such reactions with any degree of complexity or sensitivity about African American lifestyles.

  THE FACE OF AIDS FOR AFRICAN AMERICAN WOMEN

  The average age of African American women with AIDS at the time of diagnosis is thirty-six years. A significant number of the women were diagnosed when they were in their twenties and thus would have been infected as adolescents.15 Most of these young women live in urban areas in the Northeast. The fact that many of the African American women with AIDS are so young is a startling statistic. It suggests that they were infected at an age when they had the least control over their sexual lives. They were at an age when they were vulnerable to the demands not just of partners of their own age, but older men as well. In contrast to a picture of women in their twenties aware of the consequences of their actions, instead some number of African American women contracted AIDS at an age when their ideas about sex were just being formed. Many of these young women also live in urban communities where few support systems exist to protect them and allow them to grow unmolested to adulthood. Additionally, it is reported that few HIV-infected individuals in communities of color with high rates of infection, such as in sections of New York City, know their infection status.16 Many African American women and men simply do not know that they are in danger. Far too many are only found to have AIDS upon autopsy.

  Though fifty-one percent of women with AIDS were infected through intravenous (IV) drug use, twenty-nine percent were infected through heterosexual contact.17 As Ernest Drucker notes, in New York City, “... even those women who did have histories of IV drug use were, almost universally, also the sexual partners of men (sometimes many men) who were IV drug users . . . Thus, it becomes extremely difficult to attribute these women’s infection to one exposure or the other, since they were dually exposed for sustained periods of time to both risks of infection.”18 It is obvious then that African American women in such contexts are both dually exposed and dually victimized in a social setting now being ravaged by an incurable disease.

  Every aspect of family life is touched by the presence of AIDS. “As AIDS cuts a swath through family after family, some have four or five members already sick with the disease and more infected.”19 Few people are aware of what these families face. Suki Ports, of the Minority Task Force on Aids, reported the following story:Frances worked. She had difficulty after the birth of her six-year-old and needed many transfusions. She had a second child, who is fourteen months old. This baby was diagnosed with AIDS, so Frances quit work to take care of her . . . She then had to make a choice. She could move into an SRO, with two children, one sick, no cooking facilities except a hot plate, and get full benefits, or move in with her mother and receive no benefits, because her mother works . . . Her choice was made. It is difficult, and it’s straining the mothers’ resources and good nature. Family benefits to assist the whole family are not available without creating a new precedent for payments in an already strained financial outlook.20

  Many women are also hiding the fact that members of their family have AIDS. Long-practiced and familiar cultural beliefs are breaking down in the face of AIDS in African American communities. There is little evidence that fear or stigma is decreasing. Anecdotal reports suggest that some families who have relatives die of AIDS are refusing to have public funerals or indicate the cause of death in obituary notices. I found Frances’s story as the debate was being waged in Congress on the bill that would mandate that businesses protect the jobs of workers who had to take leave to care for family members who are ill. I heard no one speak to the need for this bill because of the spread of the AIDS epidemic.

  THE GENDER OF AIDS

  African American women have also been caught in the matrix of the construction of AIDS as a disease. As the discussion in “Searching for Women,” the excellent literature review on women and HIV in the United States, compiled by the College of Public and Community Service at the University of Massachusetts, Boston, and the Multicultural AIDS Coalition indicates, the Centers for Disease Control case definition of AIDS was first formulated in 1982. This case definition was based on clinical information from the groups of white gay men who had been studied. The natural history of AIDS in low-income men or in women was not included.21 There is a great deal of debate as to whether there are female-specific manifestations of HIV infection. Cervical dysplasia, cervical cancer, pelvic inflammatory disease, and vaginal candidiasis are most commonly mentioned.

  The problem for women though is that these diseases also occur among uninfected women. Therefore, any specifically female manifestations of HIV would be difficult to see clinically against the background noise of these other more common infections in women. This situation is even more complicated for African American women because they have higher rates of some of the infections mentioned. Reported gonorrhea is 10 times higher in blacks; black women report 1.8 times the rate of ambulatory or hospitalized treatment of pelvic inflammatory disease than do whites; herpes simplex virus is 3.4 times higher; syphilis ra
tes are higher, and cervical cancer is 2.3 times more common in African American women.22

  These data suggest that the medical establishment has historically failed to deal with the prevalence of sexually transmitted diseases in African American women. As late as 1989, after almost a century of study of syphilis in this country, the authors of a 1989 paper wrote,While the present study demonstrates the significantly greater prevalence of syphilis seroreactivity among blacks than among whites, we do not yet know enough about racial differences in sexual behavior through which infection is acquired, or about racial differences in ways in which infection is eliminated to explain persisting differences in prevalence.23

  Venereal disease control programs that have been touted as successfully diminishing the impact of these diseases on the larger United States population have broken down in urban communities of color. The failure of these programs is related to the AIDS epidemic in one very crucial way. The professional background of CDC (Centers for Disease Control) officials most responsible for formulating AIDS policy was in venereal disease control. 24 These are the same people who must now try and understand questions with respect to AIDS that they have failed to answer in their attempts to control other sexually transmitted diseases in African American communities.

  MISSING PERSONS: BLACK WOMEN AND THE HISTORY OF STDs

  It is at this point that I realized that the silence around the issues of AIDS, sexually transmitted disease and African American women was not a new phenomenon, indeed its roots are very old. The impact of the failure to control sexually transmitted diseases on African American women has never been evaluated. Historical studies of the history of sexually transmitted disease have not placed black women at the center of the historical reconstruction of these diseases. For example, in rereading James Jones’s book, Bad Blood, on the history of the infamous Tuskegee syphilis experiment, it occurred to me that many of the men in this study were married. Given that these men did not know they had syphilis, they must have continued to have sexual relationships with women. What happened to these women? In 1972 the study ended, and in 1973, compensation of the survivors began. Not until 1975 did the government agree to compensate treatment of the subject’s wives and their children with congenital syphilis. In a footnote, Jones notes that health care for the surviving spouses could cost as much as $12 million, while medical care for the surviving children might cost as much as $127 million. As of May 1980, approximately fifty surviving wives and twenty surviving children were receiving full medical care after examinations revealed that they had syphilis that was directly attributable to the government’s failure to treat the men. Why the government had to debate the issue of compensation to the wives and children of these men is unclear and unexplained. But this is perhaps not unusual; there are a number of long-unanswered historical questions about the role of African American women in the history of sexually transmitted diseases.