Women, AIDS and Activism

by The ACT UP/NY Women & AIDS Book Group
South End Press, Boston, MA, 1990

Review by Deborah Kutzko
May 1991; page 15; Volume 2, No. 6

"In this discussion it is important to remember that women's bodies are different from men's in significant ways." While this statement may seem self-evident, Risa Denenberg places it at the center of the very important political statement made by her book Women, AIDS and Activism (The ACT UP/NY Women & AIDS Book Group). Our bodies are different, not only in the physiological sense, but also in the way that they are viewed by the medical and scientific community and ourselves.

The Public Health Service has called the virus that causes AIDS an "equal opportunity virus." Factors like race, gender, sexual orientation and class do not influence its virulence. They do, however, have great influence on the care a person receives once he or she is infected, public education and the length of time a person may live after diagnosis. These are the topics covered in this important book.

The chapters written by women living with AIDS or HIV infection and those caring for loved ones living with this disease were clear and to the point. Women's symptoms are often downplayed by medical providers. They are told their fatigue, night sweats, weight loss and malaise are symptoms of stress, or perhaps hormonal. Doctors often overlook the HIV diagnosis until the woman is severely ill or even dead.

When diagnosed, the medical community treats a woman primarily as a carrier of the disease, rather than its victim, and focuses medical attention on her actual or potential pregnancy. The Public Health Service recommendations for many of the medications used to keep HIV+ people well exclude pregnant women; many experimental drug protocols are denied to pregnant women or women of childbearing age. In many family planning clinics, women who are HIV+ are urged to choose surgical sterilizations their method of birth control. Those who are neither white nor middle class face the biases against women with HIV infection compounded by the myriad of problems caused by the racism and classism of our healthcare system. The stories of these women are powerful and enraging.

In addition to chapters written by women personally affected by HIV, there are pieces which speak to the good work done by many women's groups throughout the nation. The need for culturally relevant care and education is clearly stated, with models for action.

In many ways, this book makes a strong addition to both the literatures on AIDS and the Women's Health movement; there are, however, some disappointing aspects. The issues faced by women in urban areas differ significantly from those confronting their rural counterparts, yet the book includes no chapters on rural women. The chapter "Transmission Issues for Women" surveys AIDS pamphlets with a "critical eye," differentiating between those that give good concrete information relevant to women's lives, and those that merely urge us to "just say no." Unfortunately, the authors do not always appear to write with the same critical eye. We find safe sex distilled down to the use of barriers: Condoms if having sex with a man; dental dams, with a woman. There is no gradation of risk. This chapter suggests that unprotected penis to vagina or penis to anus sex involves the same risk as unprotected mouth to vagina or finger to vagina sex. This failure to discern those sexual practices that put us at higher risk for contracting HIV from others that offer less deprives us of information critical to our decision-making process. While denying that women incur any risk of this virus from sexual practices or sharing needles is dangerous; denying women the information necessary for women to decide for themselves what level of risk they are comfortable with smacks of paternalism. Women need to be given the information on relative risk, and thus, the power to make individual choices in their relationships.

Another important problem surfaced in the chapter on "Lesbians." While the book stresses the need for sex positive literature, the chapters written by lesbians largely fail to present safe and enjoyable lesbian sex. The first, "Safe Sex is Real Sex," is about a self-proclaimed "dyke" who extols the wonders of having safe sex with a man. The second, ''Too Much Denial," shows us the story of lesbians who end up sleeping apart. Finally, in "Having AIDS and Being Loved," we hear from a woman who works it out with her lover, but "learns to accept pleasure with limitations." With some information, exploration and imagination, many women have perfectly safe "hot" sex with other women. First hand stories from women like those would have provided concrete backup for the political theory in this chapter.

While a single book can never cover all aspects of a topic, this book comes close and certainly constitutes a worthy addition to a broad field. People both inside and outside of AIDS and Women's Health movement can benefit by reading it.