In the summer of 1994, River Huston picked up a newsletter, Body Positive, to peruse the personals and see whether she could find her HIV-positive soul mate. She came across Mary Berridge’s ad looking for HIV-positive women who would be willing to be photographed. It wasn’t the date Huston was looking for. It turned out to be much more.
Their meeting led to an interviewer-photographer partnership that helped turned lifeless statistics into vital stories. The results of their travels across the country eventually were published in “A Positive Life: Portraits of Women Living with HIV.”
Together, these women’s names, faces and voices suggest that, although persecution remains a reality, progress has been made in understanding HIV and the humanity beyond the virus.
The first phone conversation I had with Mary Berridge lasted a couple of hours. We talked about how women with HIV were so rarely portrayed in the media and arts, and when they did show up they were depicted as victims or stereotypes. That following week I found myself picking up Mary at the train station near my home in New Hope, Pa.
During the photo shoot we continued our conversation and Mary asked if I would be willing to collaborate on a project for an upcoming award, the Dorothea Lange-Paul Taylor Prize granted by Duke University’s Center for Documentary Studies. I agreed. I added interviews to Mary’s collection of photographs, and in 1995 we won the award.
With our project, I saw the possibility to wake people up about HIV. For Mary, it was about her art and empathy for the women she had met while working for an agency on a psychological study of women with AIDS. As the project became more involved, I think it touched a personal note for her, especially after she met some of the women. She realized how she just as easily could have been in their shoes.
We were on a mission. We had a wide range of women to photograph because of my constant contact with HIV-positive women. This was crucial because we were missing ethnic and geographic diversity in the photographs Mary had taken. Most were of women of color living in or close to New York City. Breaking the stereotypes of who became infected was a primary goal.
Mary and I had conflicting emotions and, occasionally, points of view as we made our way from state to state.
One of our issues was that I had a vision for the book that extended from my activism. I knew that statistics from the Centers for Disease Control and Prevention indicated that AIDS was more prevalent in African-American communities. I also knew that this was only an AIDS statistic, as opposed to an HIV estimate. An AIDS statistic reflects who was infected 7 to 10 or more years ago. There were no definite demographics for whom was becoming infected with HIV today, though it was clear that women were among the fastest-growing segments of people being infected.
From being on the front lines I knew that the face of AIDS contained all women–from Sugar, a recovering prostitute and IV drug user, to Karri, a right-wing, suburban, Christian housewife. Mary had seen mostly women from the city who relied on social services and needed the $15 they were paid for the interviews in the psychological study she was involved in. She felt that the women I was introducing to her were exceptions. Our discussions became heated sometimes.
Extremes of emotion surfaced in other ways. When we were in Florida shooting photos of Debbie with her daughters and her grandson, Mary was ecstatic with the light and energy of the women. Meanwhile, I had to go to the bathroom and cry at the prospect that these girls might lose their mother.
Late one night during a long ride from Miami to Tampa, Mary and I realized this project needed to be a book. Mary agreed hesitantly because she felt the odds were against us. Who could imagine a color photography book about women and HIV?
We talked about strategies, and when we returned home, I called a reporter who had written a story about me and whose husband had a publishing company. I asked her what we needed to do. She told me to call her husband, which I did.
Within a week we walked into the offices of Running Press with some photos, a few stories and a polished sales pitch.
We walked out with a tentative deal that depended largely on my lecture schedule. The publishers thought my lectures, some of which were on HIV and had drawn controversy on the East Coast, would be a vehicle to publicize and sell the books. By the next week, the deal was solid.
The books would feature the comments of 30 women and color photographs of them. Large type would display their names, ages, years of infection and date of diagnosis–and the way they were infected. How the women contracted HIV should not be important, but people always want to know, so we figured we would get that out of the way. I cringe a little now, wondering whether such a display promotes judgment or empathy.
On the road, things started to get difficult again. When it was just a project, it was relatively easy to get women to participate. As the project evolved into a book, many women became hesitant. Sometimes it was so frustrating; in Georgia we sat in a hotel room as one woman after another decided she was not ready to go public.
This was totally understandable to me. Saccharine pity, loss of jobs and family denial were still realities for women with HIV in 1995–as they are now.
The trip was disappointing and financially devastating. We had lined up 10 women, and they all canceled–except for Tracie.
When we arrived at Tracie’s home, Mary and I looked at each other, and if we hadn’t been so stressed, we would have laughed. Tracie’s home looked like it came straight out of a Queens housing complex where Mary had spent so much time photographing women. We thought Georgia would be different–trees with moss hanging from them and old Southern houses. Still the trip was worthwhile.
Tracie had been married just a few weeks before, and with a little persuasion, she was back in her dress. It turned out to be one of the most beautiful photos in the book. It also shows there is life after HIV. One thing that has been missing in the media is this enormous strength without pity.
As we made our way across the country, seeing old friends and making new ones, I began to learn details of personal experiences that showed I was not alone. Before my girlfriends and I were so busy as activists trying to make changes that we rarely told our stories, except among a few close positive friends. Now I learned of Patsy, whose doctor told her, “Remind us when you come in that you are HIV-positive so we can take extra precautions,” and how she was asked to dispose of her gown and paper from the table.
Women repeatedly complained of being asked “How did you get it?” instead of “How are you?”
I also was able to finally understand why people always said, “You are so brave.” When those words were tossed in my direction they meant little. I had become inured to my condition; I was just trying to live my life. Though that is what all these women are trying to do, there is something so courageous about not giving up.
In each of the lives of which we became a part, I heard about hopes for the future, goals of returning to school, plans to have children, desires for love and marriage. The world often thinks that once you are diagnosed with HIV it is the end of your life, especially your sex life–you blew it, now you should just shrivel up and die.
In reality you still have the same dreams. It was inspiring how many of the women continued to pursue their ambitions, like Shana, who is attending medical school, and Bunny, who found love.
I had always been in touch with women who are HIV-positive, but now I felt surrounded. As good as it felt to share the accomplishments, sometimes picking up the phone to clarify, edit or just check in was difficult. I was scared for them when they became sick. Just last night I called Patsy and found her in the hospital battling pneumonia.
I heard about the hurt, frustration and pain when medications didn’t work as well as billed. I heard of the depression when they were rejected after disclosing to someone that they were positive. It was hard enough being a single woman in America but being HIV-positive was just too much and too hard sometimes to make it worth the effort.
Our visit to New Mexico and a woman named Shana helped bring Mary and me some peace.
We were late and became lost in the hills outside Santa Fe. There were no road markers, no phones and when we asked for help we were greeted with stares and shakes of the head. Finally we found Shana, and with very little light left, we set up the shoot. It was perfect. The golden light on her face as she stood under the arbor created an air of serenity.
Later, as we sat around the wood stove, Shana asked if we would like our project to be blessed. She lit sage and pine. As she invoked the blessing, all the frustration, sadness, difficulties, conflicts and doubts seemed to go the way of the smoke. Mary and I cried. Without words we realized what we were doing was important.
We must stop “other-izing” and categorizing this disease. We no longer can divide up people according to high-risk groups or high-risk behavior.
AIDS is about the woman behind the cash register at the supermarket, the woman at the post office, the student in your class, your mother, sister, aunt, yourself.
The women who participated in the book revealed their most intimate selves, giving a glimpse of what it is like to be a woman in the 20th Century concerning sex, love, marriage, children, health care, politics, discrimination and work. Their stories transcend the topic of AIDS.
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River Huston, a poet, educator and activist, writes a column for Poz Magazine, for people infected with and affected by HIV. She is the North American contact for the International Community for Women Living with HIV/AIDS.
