I first became aware of the way in which the AIDS epidemic was affecting women in the mid-'80s. From the beginning, the epidemic affected gay men disproportionately and as a result, it had a powerful male profile. Many women did not realize their own risk for HIV/AIDS from male partners through heterosexual transmission. Physicians and others in health care institutions were slow to recognize women's risk. Although female AIDS cases were increasing rapidly in the mid-'80s, these cases were being overlooked. More concern was expressed about the risk that women presented to others such as their male partners or unborn children. The media also reinforced the image of women as "infectors."
My first formal research on women and HIV/AIDS was as a collaborator in a multi-center study of female prostitutes conducted by the Centers for Disease Control and Prevention in 1985. That study helped me realize how women were at elevated risk for HIV/AIDS because of risk behavior on the part of their male partners. Prostitutes were like other women in society who lacked control over condom use. It seemed important to pay attention to the role of male partners in HIV prevention.
Power and Prevention
Power relations between the genders had important implications for women's HIV/AIDS risk, transmission, and care. I felt a need to call attention to adolescent women's risk for HIV because of gender power relations that are formed during adolescent socialization. I wanted my writing to capture how gender permeates the epidemic and affects transmission, prevention, and care.
I remember being personally moved by an article, "The Bleak and Lonely Lives of Women with AIDS" by Jane Gross, that appeared in The New York Times in 1987. Many women with HIV/AIDS were mothers caring for children, who were sometimes themselves also infected. As primary caretakers, women often must plan for the welfare of their children after their own death. The article vividly captured infected women's social isolation and was so sobering and powerful that I was haunted by its images long after reading it.
I was so personally struck by the powerful male profile of the AIDS epidemic in the early years that I felt a strong personal motivation and commitment to call attention to the female epidemic. That early male profile had given rise to education and prevention programs that were based on the needs of men. So my writing emerged out of a need to create a female profile of the AIDS epidemic.
AIDS was affecting entire family units consisting of women, their children, and extended families. Most women with AIDS relied on kinship relationships with mothers and sisters for help with care of their children. It was clear that AIDS had multiple, diverse rippling effects on families. So I wanted my writing to capture the dynamics of these effects and to describe a family-based epidemic. It was also clear that AIDS was largely a disease of the poor and disenfranchised. I wanted my writing to illustrate how poverty is at the base of this epidemic where variables of gender, race and class intersect and affect access to HIV/AIDS care. The epidemic is driven by the dynamics of this intersection.
Women, Families, and HIV/AIDS
was written in an effort to capture the experience of HIV/AIDS from the perspective of an infected person. I wanted to present descriptions of that experience directly from those living with the disease itself. I interviewed 11 persons in all (nine women and two men) who kindly agreed to serve as informants and talk to me about their experience. They also agreed to write about their daily experience in diaries that were provided to them. I then extracted vignettes from their interviews and diaries and matched them with the topics covered in the seven chapters of the book. The vignettes served as powerful openers to these chapters. When added, the vignettes immediately made the chapters come alive and it was at that point that the chapters really took form and came together as a book. I am very indebted to the informants for their contribution to the book.
The book includes biographical sketches of the informants that provide more information about their personal situations. The Southern California area where I did my research for the book has a diverse population of persons with HIV disease. I wanted to capture this diversity in the vignettes and biographies. Some of the informants were from other countries in Central and South America. So some interviews and diaries were done in Spanish and then translated into English.
Writing the Book
I began writing Women, Families and HIV/AIDS in 1995 when protease inhibitors were just beginning to be introduced. The hope and promise of these new drug therapies are described by the informants. These descriptions also emphasized the difficulty with taking these drugs because of their strict regimens. They capture the complexity that the drugs add to the daily lives of those taking them.
I am a sociologist who teaches at California State University, Long Beach (CSULB). As a sociologist, I'm interested in the behavioral aspects of AIDS as well as the dimensions of gender, race, culture, and class. My work on HIV/AIDS is applied and is intended hopefully to affect HIV/AIDS policy. I have strong ties with local community-based organizations (CBOs) that deliver AIDS services and often refer student interns. I very much value the relationships I've established over the years with staff and clients at these CBOs.
I wrote my book for persons living with the disease and their families in the hope that it is helpful to them in dealing with the personal challenges the disease presents. I was pleased that the book got a favorable review by Christopher Voigt in the November 1999 issue of A&U magazine. It is highly meaningful to me for the book to be well received by the HIV-infected community.
The book also includes as its intended audience service providers and academics who deal with the disease in their professions. I emphasize the important role of nurses who have served as primary professional caregivers in the epidemic but who haven't got very much attention for this important role. I teach an AIDS course at CSULB and students from this course have continuously challenged and inspired me. So students are also members of the book's intended target audience.
I try to show the relationship of HIV disease to our legal system. The illegality of both drug use and prostitution is related to HIV risk behavior. I cover policy issues and stress the need for a national policy to ease the burdens faced by women and families with HIV disease. The epidemic has been with us now for 20 years in this country. Such a national policy is thus long overdue.
I pose a number of questions in the book that I am really unable to answer but that merit further attention. These questions pertain to female empowerment. I wonder what it's going to take to empower women to overcome institutional barriers and gender imbalance. I ask:
- How can long-term solutions be implemented to change paternalistic institutions and to end women's economic dependency on men?
- How do we correct occupational segregation, gender inequality, and the feminization of poverty?
- How do we involve men more in HIV prevention?
- How can we go about formulating and implementing policy to provide care to families with HIV disease?
- How do we create family-coordinated AIDS care that meets the multiple, complex needs of infected women and their families?
I know that these are daunting tasks but necessary ones in order to tackle the complexity of problems faced by families with HIV disease in our society.
Adolescents, particularly girls, often have sexual experiences with older persons who currently have a higher prevalence of HIV infection. Adolescence can be a confusing time for young people who are forming their sexual identity. Peer pressure also can be a powerful influence on adolescent's risk behavior. These factors, combined with the perception of invulnerability to disease and consequent immortality that is common among young people, are often compelling in HIV risk behavior. For adolescent girls a sexual relationship may be among the first ways they can separate themselves from their parents and develop an adult identity. Because these early sexual relationships represent independence, they may assume an exaggerated importance for these young women. Moreover, these girls may feel that they are not in a position to make demands on their partner -- to suggest he use a condom or be faithful -- for fear of jeopardizing the relationship.
Testing is actually a measure of risk behavior after that behavior has taken place. This issue is relevant to women because a woman's discovery of her positive serostatus often precedes the realization that she may be at risk. Women's knowledge of their own serostatus is intricately tied either to their being pregnant or to their male partner's being tested. If HIV testing and counseling were more often a part of routine health care for women, not only would women's own health benefit but that of their children as well.
Most treatment programs have developed from men's drug use patterns and needs and therefore have a male profile. Fewer drug treatment centers serve female users than male users. Because of drug treatment's male profile, women who enter treatment are placed in settings in which men dominate both as clients and staff. The result is that the special concerns of women are often overlooked. There is a lack of treatment centers that accommodate HIV-infected women. Women's efforts to secure a male running partner often involve increased needle sharing and sex for protection and access to drugs. For women, then, addiction is often closely tied to love and to their sexual relationships with men. This emotional involvement complicates the process of disengaging from drug use. Some IDU women who become sober remain sexually involved with a partner who uses drugs, and thus the women continue to be at risk for HIV.
The greatest barrier to HIV-risk reduction for prostitutes is the illegality of what they do. That prostitutes generally live on the margins of society affects both their vulnerability to HIV disease and their responsiveness to HIV/AIDS-prevention efforts. Prostitutes worldwide report that the main reason they do not use condoms with paying partners is the partners' resistance or refusal. Frequently, customers will simply offer a prostitute more money to engage in higher-risk sex.
Prevention messages must take account of the realities of gender-based power relations in women's lives. Not only may advice to be monogamous and to be assertive about condom use be irrelevant to women, it can place them at risk of verbal abuse or physical violence. AIDS prevention approaches must account for female subordination and take care not to make women vulnerable to physical harm from partners.
In the past, physicians were slow to recognize the symptoms of HIV disease in women, and as a result, the disease was often in an advanced stage before it was accurately diagnosed. Many infected women were presenting with gynecological symptoms, and obstetrician-gynecologists did not necessarily see initial symptoms as being related to HIV disease. The potential for misdiagnosis existed. In many instances, AIDS was simply the diagnosis that was left at the end of a long process of exclusion. Many women had to endure recurrent symptoms and repeat visits to the doctor before an AIDS diagnosis was finally made.
Not only did the media provide inaccurate information about AIDS, it obscured women's risk by focusing on prenatal women and on prostitutes. Media attention to pregnant women and prostitutes promoted an image of women as vectors of transmission. These women were portrayed as irresponsible reservoirs of infection. Although the media paid little attention to women's risk early in the epidemic, once it did, ironically, women became the focus of attention, to the exclusion of both gay and heterosexual men. The primary targets of condom advertisements became women even though condom use required the cooperation of male partners. Mass media campaigns targeted women and threatened to reinforce the idea that only women are responsible for safer sex. This is especially true when a similar campaign targeting men is not made. The media also inaccurately depicted the role of race in the AIDS epidemic. Magazines portrayed it as a white middle-class epidemic. Racial depictions on television, like those in the print media, also did not represent those people actually affected by HIV/AIDS. Television drama neglected the fact that most women with AIDS were African American or Hispanic/Latino and IDUs or the sex partners of IDUs. These women did not become infected from a one-night stand with a bisexual man and they were not middle-class.
Although prevention efforts have sought to educate women about their risk for HIV infection, the success of many of these efforts depends on behavioral changes by their male sex partners. Women may know about the dangers of unprotected sex and the benefits of using condoms but still not be able to use condoms because their male partners object. Thus despite their concerns about risk, women may be prevented from acting on the information provided them. Traditional gender-role socialization promotes different views and values about sex for men and for women. Men are encouraged to be the aggressor -- the active partners in all sexual encounters -- and women, the passive recipients. Traditional gender-role socialization is also reflected in men's sexual behavior. Men are trained to see sex as a conquest; the number of women with whom they have sex, their conquests becomes the indicator of their manliness. This attitude runs counter to safer-sex guidelines that promote monogamy. According to traditional socialization, monogamy is not to be valued as a way to demonstrate masculinity. Men's issues related to HIV are long overdue for consideration and must become part of men's health agendas. HIV/AIDS needs to be redefined as a health issue affecting men. AIDS-prevention strategies must not contribute to gender role stereotypes that hinder the effort to control HIV disease. These strategies will have to be sensitive to the way in which reinforcement of traditional masculine identity encourages the continued spread of the epidemic. Control of the epidemic will require that men be given clear and concise gender-specific information about AIDS. But men must not merely be given the information; they will be expected to act on it. Unless men become a major focus of research and prevention efforts, women will continue to be at risk for HIV disease.
Because HIV/AIDS is a disease with no cure, it involves caring and is thus appropriately a nursing disease. Although nurses have been providing care to HIV/AIDS patients since the beginning of the epidemic, the media has paid little attention to them. Nurses have been relatively invisible despite their dedication. Infected mothers must plan for the welfare of their children after their own deaths. In some families, no relative is able to assume caregiving responsibilities for the children of mothers with HIV/AIDS, putting increased pressure on the child welfare system. HIV has stretched the coping and caring skills of caregivers and has tested the endurance of many families. The contribution that social scientists can make to policy is in explaining the structural conditions, such as poverty and gender inequality, that put poor families, particularly poor women, at risk and keep them there. HIV/AIDS policy needs to be sensitive to the socio-cultural context in which families conduct their daily lives. Social scientists must take an active role in formulating a national social policy that will empower families with HIV disease.
Women, Families, and HIV/AIDS: A Sociological Perspective on the Epidemic in America, Cambridge: Cambridge University Press, 1999, $18.95 (paper). Back to Top