By Christine, Dorian, Kristine, Tom & Vanessa
Nine months ago, Maria birthed a healthy baby girl. Just two days later, the joyous ecstasy of new life quickly led to a striking reality: Maria’s husband was diagnosed with HIV.
“He thought I was going to leave him, but of course I wouldn’t. We’re in this together.” At the time, she didn’t know quite how personal her statement would become. Just three months later Maria and her newborn daughter were also diagnosed with HIV.
“Initially I was able to handle it in the moment, but then it hits. In time, it’s become much more difficult to deal with.”
Maria certainly feels stigmatized and has refrained from telling her other children. In this Midwestern town, the needs of Maria (a pseudonym) and other women with HIV are ripe with concern and lack of viable opportunity. She told us, “What I, and other women need, is just a place to talk.”
Currently there are HIV/AIDS support groups offered locally through a community center. Our community-based student project, focused on understanding and empowering women suffering from HIV/AIDS locally, brought us to these groups. What we found was a support group for homosexual men that did not offer the support women need.
Through research concerning sexual orientation and HIV/AIDS, we discovered that homosexual men and heterosexual women have different coping mechanisms and symptoms. Women experience more illness as a result to their HIV/AIDS status than homosexual men. They also are more likely to need social support to deal with the pain and fear of being HIV/AIDS positive. (Mosack 2009:137) Although the group that exists can be literally defined as a place to talk, it may not be the best place to be heard and understood as a woman.
Those who are infected with HIV – men and women alike – bear the burden of the stigma, yet the nature of the stigma is different for each group. Homosexual men have been painting the face of AIDS since its discovery in 1981, and those who aren’t infected struggle to see women as part of this picture. It’s common for homosexual, HIV-positive men to have contracted it through unsafe sex with an infected partner. Heterosexual women, on the other hand, often contract HIV from one of a number of sources: an unfaithful spouse, rape, or drug abuse. Because their experiences are so different, men and women struggle to support each other.
Jane, a woman who currently attends a substance support group for HIV/AIDS positive people, told us in a private interview, “The support group coordinator asked me if I would be willing to share what we had talked about alone… and of course I said no…they wouldn’t understand”. The coordinator was referring to her past that included circumstances of domestic abuse. Rocking back and forth in her chair and twisting her fingers in her palm she told us, “you know…you just can’t talk to men about… you know… girl things and girl problems”
Women are not comfortable sharing their experiences in the current group dominated by gay men. They want to relate to women like themselves, women that deal with the same issues, experience similar struggles and want the same things.
Maria, a new HIV patient, could find solace in the companionship of a woman like Jane, who has been living with the virus for ten years. Jane attributes her infection to “the lifestyle [she] was living” – a lifestyle not only haunted by domestic abuse, but loaded with unsafe sex, drug abuse, and financial issues – until she was diagnosed in 1998.
Both Jane and Maria would find inspiration from Sharon, whose drug-abusing husband infected her with HIV before he died in 1991. As a consequence of her weakened immune system, she contracted cytomegalovirus and lost her vision. Now, with a steady job and a house full of grandchildren, she craves an outlet for her emotions. She wants to talk about her boyfriend, her family, her future. She needs the support of women like Jane and Maria, and they need her.
These women’s stories are just a few examples of the hardships faced by women with HIV/AIDS. Within the community and elsewhere there is a large population of women affected by HIV/AIDS and the numbers are on the rise. Women presently account for one fourth of all new HIV/AIDS diagnoses (CDC, 2008.) What we found here is a microcosm of this national transition. As the head of a local AIDS assist organization told us, “Women are the new arena.” They are part of the new face of AIDS.
Although there are support systems in place in the community, there is no program designed to specifically address women’s needs. Their desire for a place to talk has not been recognized. Our research intersected with this inequality of services, something we are now helping local organizations to address.
If women can’t find support in the AIDS community that currently exists, they can empower themselves through solidarity. They can create their own community: a support group with their desires molding its design.
Within a safe, sympathetic environment, they will be able to create their own support group in which they can speak freely about, “girl things and girl problems”. It will welcome conversations about relationships with friends, family, and with themselves. In doing so women will be able to join together in a struggle to find a place in the realm of HIV/AIDS that hasn’t existed before. It will be a place in which they can discuss women’s health issues and concerns. It will be a group run by women, for women, a place to call their own.
Sharon can reconcile her sense of betrayal stemming from the idea that her husband’s illegal habit infected her. She will be able to do so with a whole community behind her. Jane can learn skills that will empower her to effectively communicate with her family, through the example of the women she meets. Thus recognizing her family’s concern yet defending herself against the stigma. And Maria can talk about the guilt of infecting her baby while feeling secure in the knowledge that her baby will have adequate care while seeking support. A support group will help these women by not only allowing them to open up and get advice from the women in the group, but by educating them, body, mind, and spirit.
Women need a place to talk so that they can cope with the reality that they are becoming a part of the new face of AIDS. Young women represent the real new face of AIDS, a face that is not always as visible as it needs to be. “I’m used to putting on masks,” says Maria. “I have so many different masks that sometimes I forget which one I’m wearing.” A women’s support group would allow Maria and others to unmask the true face of AIDS, a beautiful and vibrant face that deserves to be revealed and recognized.
We want to give a special thanks to our community partner who introduced us to the wonderful women we interviewed and especially to the women who came out from behind their masks to speak to us.
Image: Femme Facade, by Peggy Bonnett Begnaud
References & Further Reading:
Banzhaf , Chris, Cynthia, Marion, and Kim Christensen. 1992. La Mujer, el Sida, y el Activismo. New York, NY: South End
Centers for Disease Control and Prevention. 2008. HIV/AIDS Among Women.
Website: HIV/AIDS Positive Stories.
Mosack, Katie E. 2009. Influence of Coping, Social Support, and Depression on Subjective Health Status Among HIV-Positive Adults with Different Sexual Identities. Journal of Behavioral Medicine 34(4): 133-144
6 thoughts on “Just a Place to Talk: Women and HIV/AIDS”
While I appreciate and support the efforts that you are making and have made for the support of PLWAs it worried me that you spoke as if AIDS was a homosexual male and heterosexual female disease. It seems, further, as though you are talking about a universal HIV/AIDS experience. The picture you pain seems predominantly Western. Coming from South Africa, where HIV/AIDS is a predominantly heterosexual phenomenon and where the ‘face of AIDS’ is most likely to be a poor, black female the way in which your post is written seems insensitive to this and to the experiences of these women. Furthermore, a lot of community support in the developing world involves exactly what you describe as needing to occur in what I assume is the US: support by women for women, women talking about ‘girl things and girl problems’. Maybe the developed world has something to learn from the developing world in this respect; a spillover from the developing world being so disproportionately affected by HIV/AIDS.
Simon, a great comment! You are entirely right that there is a much broader range of experiences, problems and potential solutions with respect to People Living With AIDS (PLWAs) than what my students described. In their defense, it was the task I set to them – to use ethnographic research to examine a local problem – and their post reflects what they did. However, I didn’t ask them to place this particular research within a broader context (only so much you can do in a semester!), and I am quite pleased that you have done this.
If you do come back for another visit, both the students and I would enjoy hearing more about support by women for women in South Africa and more broadly in the developing world. If there are specific things you’d suggest to read, that would be useful!
I took a glance at Google Scholar, and saw this piece by Susser & Stein (2000), Culture, sexuality, and women’s agency in the prevention of HIV/AIDS in southern Africa.
Ahh… OK. That makes more sense. Most of my academic reading in HIV/AIDS has been on the economic implications of it (I am a grad student in economics). However, I have anecdotal support for what I said mainly through protest activity with the Treatment Action Campaign (TAC) and social meetings with groups linked to the TAC. My professor for a course I did during my Masters in Economics, Nicoli Nattrass (author of The Moral Economy of AIDS in South Africa), recounted several anecdotes to us of research she undertook for her book interviewing many African women in which they supported one another far more than men or predominantly homosexual groups doing the same. Nattrass and other researchers at the Aids and Society Research Unit (ASRU) at the University of Cape Town are worried too about the impacts of HIV/AIDS stigma (Brenda Maughan-Brown has written a fair amount about this in Khayelitsha, a township which is part of the greater Cape Town area (paper here). You can see other working papers on similar topics here). However, I have not seen much ethnographic research on the topic as my personal research interests, while piqued by HIV/AIDS, are not in HIV/AIDS. Thanks for the response. I realise too that my comment was probably more strongly-worded than I intended, but you received it, and responded to it, well. Thanks again.