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FEATURE by Debbie Fraker and Charlene Perry World AIDS Day, Dec. 1 1990, will recognize that women are increasing affected by HIV and that the place of women in the AIDS crisis has too often gone unrecognized and been under-appre ciated. Worldwide, it is estimated that 150,000 women have developed AIDS; almost 10 percent of these live in the U.S. Since 1987 the number of women with AIDS has increased 75 percent. But, because women with AIDS are frequendy not included in statistical counts, these num bers do not begin to reflect the size of the problem. Many of the opportunistic infec tions that are unique to HIV infected women do not show up on the CDC’s lists. Women have also not been included in many drug trials so we know little about how the drugs or even the virus itself is affecting women. Many more women, however, have been affected by HIV by choice. They provide direct care and support to the seropositive; they are organizers in AIDS- related political activities; they are the founders, directors and staff of organiza tions working to find and administer bet ter drugs and more effective healing prac tices; their numbers are myriad among those who are searching for a cure. Increasingly—as more men and women of color are being diagnosed with HIV— women of color are becoming involved in the effort to extend AIDS education and care in their communities. In fact, women provide the majority of the care provided to those with HIV. How does it happen that women—and in particular lesbians, statistically the group at lowest risk—are so involved in the AIDS crisis? And how do women feel about taking on the stereotypically female role of caretaker in a situation when most of their clients are men? The following are profiles offer a brief glimpse of tiny number of Adanta women affected by AIDS Lesbians and AIDS Robin Brown and Fran Greenfield are lesbians who helped found a support group for persons living with AIDS, with special emphasis on Jewish PWAs. The group's name is AIDSchaim—"chaim" meaning life and punning on the words "etz chaim” meaning tree of life. Robin and Fran are members of Congregation Bet Haverim, Atlanta's Reconstructionist lesbian and gay synagogue. The support group arose partially in response to the death of two members without organized support system to help. Other than watching someone they care for deeply die, for both women the most difficult part of running the group has been the overwhelming need they have encountered. It is important, they feel, not to take on so much responsibility Women and AIDS World AIDS Day recognizes the women who are infected and their sisters who are battling to end the epidemic. that they lose effectiveness altogether. The group has attempted to cope with this challenge by rotating responsibilities rather than using the one-buddy system other AIDS organizations have used. "It is a very sane way to provide a service and still have a life." Robin is quick to point out that she doesn't feel "expected" to be a caretaker because she feels a shared effort has been put forth by both the men and women in their group. Fran expects the caretaking response from herself, but is frustrated with a lack of reciprocity from men on women’s issues. "I wouldn't want women to do less, but I would want men to do more." Karen Boyles will be the new execu tive director of Project Open Hand/Atlanta as of Dec. 10. You know Open Hand—they deliver meals to the homes of PWAs six days a week. Karen has worked as a volunteer driver since its founding two years ago. She comes from a nutrition program for the aging into one of Atlanta's most visible AIDS service organizations. Her greatest concerns as she takes that leap are the ignorance and prejudice that attach moral judgments to HIV disease. Being expected to be a caretaker is not a problem for Karen. She recognizes that it is harder to be a caretaker than not to be, but she is not willing to let herself use feminist resentment of being expected to nurture as an excuse not to fill this need. "We are all caretakers, men and women, but some of us neglect our duties!" As a driver, Karen's greatest rewards were from knowing that "the person I take meals to needs them and it's helping them stay home instead of being on the street or being forced into another living situation." Karen recognizes that a single meal also provides the freedom to enjoy one's digni ty. "Everyone deserves respect and digni ty, and this disease has made it easier for people to be stripped of that." Karen Genet is an MSW who works with the Hemophilia Society of Georgia. She is also a NAPWA volunteer. As was the case for many lesbians, the thought occurred to her that this was not "our" issue. But she accepted the HIV epidemic for what it was—a "people issue.” She knows she can make a difference both professionally, as a social worker, and simply as someone who cares, offering information, empowering people to turn their lives around. Working with AIDS has changed Karen's perceptions about many things. As someone who thought they "got along well with others," she was taken aback by the sexism and power struggles within the gay community. She then encountered gay men confronting their doctors, mak ing treatment choices and empowering themselves by trying to improve their health. As someone who grew up believ ing "Doctor as God," she is now a firm believer in choice when dealing with the medical establishment. Karen is a fan of grassroots organiza tions such as ACT UP and Queer Nation. She gets "angry at people who get angry at any group that brings much needed attention to this disease." "Men have adopted the self improve ment approach and learned to take care of themselves, so I don't consider myself a caretaker," offers Karen. "You make the choice to deal with it or you don't." Women of Color Reaching Out Many women of color have taken on the challenge of working with AIDS as a result of the need for more education and support in their communities. Janet Cleveland, a black, heterosexual woman, is the Outreach Coordinator for the AIDS Research Consortium of Adanta (ARCA). ARCA offers a central coordinadng facili ty through which individual physicians can be involved in drug research. It is Janet's job to deal with the increas ing rate of HIV infection in the heterosex ual population, particularly among people of color and women. She is trying to get more women and minorides involved in drug and treatment trials. "Persons with AIDS have got to be the most courageous people in the world," Janet says after three years of work with the disease. She is particularly impressed by the number of PWAs doing volunteer work for AIDS organizations—an impor tant kind of self-empowerment. Although she seems to resent being "expected" to be a caretaker, she does not begrudge that response in herself. "Nurturing is part of my personality. We're brought up to nurture." Janet point ed out that women are socialized even more strongly in the African-American culture to be caretakers. "We have to take care of things!" The most rewarding part of this work for Janet is seeing people living positively with AIDS rather than simply surrender ing. "We need to see it as a manageable problem and get over the stigma." Her fears stem from the potential she sees for AIDS to wipe out a whole generation. "Sounds dramatic, I know, but I really think this disease has that potential." Margie Shannon is the Site Coordinator for the Southern Christian Leadership Conference She started as a drug and alcohol coordinator in 1983. Her involvement with AIDS came as the direct result of her clients expressing their fears about the disease. Her ignorance caused her to refuse clients for a six month period, a time when she would send her clients to the Adanta Gay Center. Her own "red flags went up" when she realized she was sending her African- American peers elsewhere for help she could not provide. As she became knowledgeable about HIV, Margie was struck by the fact that her peers were not accepting the reality of AIDS. In her efforts to educate people of color, SCLC gave her the position of implementing its HIV educational pro grams. Today she employs school lec tures, training seminars, street outreach and in-home safe sex parties to get the word out. Margie is astounded by the increase in African-Americans affected by this dis ease. Because she is a woman driven to educate and nurture her community, it has been a natural progression for her to embrace this disease fully. She and others in her field have had to identify and coin terminology to temper attitudes within their community. As Margie states, "I'm just trying to use any means necessary to inform. In trying to change someone's belief system, you find something they can relate to." Faith, Facts and the Bridge Between Kathryn Cartiedge is a Presbyterian minister and the director and founder of the Atlanta AIDS Interfaith Network, a network of churches, synagogues and clergy who are willing to provide pastoral care or services for the HIV infected. Because the majority of people she sees at AIDS Interfaith are men, Kathryn chose to facilitate a women's support group, in part, as a learning experience. "We're still learning about how women are dealing with HIV," she says, "the similarities to men and the differences." Kathryn's greatest fears about AIDS are of the unknown. She feels that we are all "on the crest of the wave that will drive home the fact that anyone could get AIDS." She is concerned about the pub lic's reactions to the statistics being pub lished by the CDC and others. Because certain people, like heterosexual, monoga mous women, do not fall into the so- called "risk" categories, they are not get ting tested. Women are contracting AIDS primari ly from IV drug use and sex with infected men. The women in her support group don't necessarily fall into the CDC’s "high-risk" categories. As a result, women Continued on page 11 Kathryn Cartiedge, Founder of Atlanta AIDS Interfaith Network .. x, 3. ■ , , M Margie Shannon of the Southern Christian Leadership Conference Robin Brown and Fran Greenfield helped found AIDSchaim Janet Cleveland of the AIDS Research Consortium of Atlanta Karen Genet of the Hemophilia Society of GA, and NAPWA volunteer 6 Southern Voice/November 22, 1990