Living with AIDS:
Narratives of Thai Women on the Path Toward Healing
By Narumol Sriyanond Bartone, Ph.D. , Women in Focus Production, Inc.
Women living with HIV/AIDS anywhere in the world today have certain challenges in common. They not only face physical changes and pain, but also isolation, despair and loneliness. I plan to direct a one-hour feature documentary film examining a specific sector of that population: the life stories of women living with this disease in northern Thailand.
When I first researched this project, I learned that the infected women I spoke with, after losing their husbands to AIDS, not only felt isolated but also worried about the welfare of their surviving children. Whether they were prostitutes, housewives, or teenagers, they all had to deal with varying degrees of Thailand’s negative cultural response to this once-fatal disease, causing them additional fear, vulnerability and shame. The Thai government provides the free drug HART (Highly Anti-Retroviral Therapy) to HIV/AIDS patients, enabling the infected women and men to survive, but they must still learn to live with the disease and protect against spreading it to others. Moreover, survivors’ attitudes, coping skills, and mood all contribute to the quality of their lives as well as the degree of discomfort and pain they experience.
Planning the Documentary
During my fieldwork, I asked members of Planned Parenthood Association of Thailand (PPAT) to take me and my pre-production team to visit housewives and children with HIV/AIDS living in the small villages and mountains of Chiang Mai city in northern Thailand. My interviews consisted of a combination of social interaction, participant observation, and strategies for encouraging self-reflection. As a performance theorist and cultural observed, I also focused on everyday activities, using oral narrative and body movement. Because these women often shy away because of the stigma they suffer, there is ongoing negotiation between me as the researcher and them as subjects. My goal is to get close enough to the HIV/AIDS women to give them individual voices. As an ethnographic filmmaker, I want to make these women the focus of my film, moving them from the margins of existence to a central position. In addition, I want my film to explore how these women, despite limited resources, learn to cope with their guilt, self-blame and deteriorating health and embark on the path toward healing through productive acts, supportive group meetings and regular medical care.
One of the Stories
At first, one mother from the plains, who hadn’t yet disclosed her illness to her daughter, shied away from the camera for fear her daughter would learn her secret. She turned her back toward me as she continued crocheting. This gesture showed me how shut down she had become, fearing my judgment of her as a woman stigmatized by her illness. However, after speaking with the mother for quite a while, I was able to convey that her narrative could become a creative way to tell her child, once she was older, her fascinating life story, as well as conveying the love and strong bond she had for her little one. Most of all, this woman’s narrative would give an otherwise silenced woman a voice!
In general, when I first approach the infected women, we talk about using both the body and the mind to help the healing process. I examine how these women cope with their lives by helping them express their emotional and physical pain, on the one hand, and their daily activities, artistic creations and community projects, on the other. In order to understand how these women survive, I must also examine their process of healing in relation to their gender. I want to know – and show – what it means to be a woman with HIV/AIDS.
I came upon life stories of Thai women with HIV/AIDS in 2001 when I participated in the 45th session of the Commission on the Status of Women at the United Nations in New York. I was invited to join the Thai Women Watch Organization and attend the session with Dr. Pawadee Tonguthai, Secretary General of Thai Women Watch, and Khun Sunan Doungchan, a member of PPAT. There, I learned that women are being denied the protection of condoms and other forms of safer sex, in spite of their crucial roles as mother of children, wives and valued members of the human community. This conference inspired me to direct a feature documentary portraying HIV/AIDS women as subjects, telling their stories in a way that expressed their dignity as human beings.
The Story of Na
My goals are substantial because I approach my subject from three different perspectives: a) crossing boundaries b) the mind-body connection and c) the familial relationship between mother and daughter. I also address how all three perspectives influence the path toward healing. A Mong hill tribe woman captures the essence of the first theme -- crossing boundaries.
One afternoon during our fieldwork, two members of PPAT drove us along a curvy, steep road with breathtaking vistas, passing elephants along the way, to an isolated mountaintop where a Mong hill tribe is located. The reddish dirt road resembled the colors used by the hill tribe women to create the stitchery on their clothing. When we arrived, several women were sitting together in a circle on the ground doing cross-stitching. But Na, the woman infected with HIV/AIDS, was nowhere to be found. A male PPAT member introduced me to the chief of the Mong hill tribe, who went searching for Na. Unable to locate her, he finally used a megaphone, which could be heard all across the mountain, to ask Na to come back home, It was obvious that Na was a displaced woman who was struggling with the stigma of her disease. She felt ashamed and, as a result, chose to remain in her own private sphere rather than venture back into the tribe. The goal of my film is to help Na, and other women like her, come to terms with their disease and rejoin the human community.
While we waited for Na to arrive, we created a casual setting in front of her home to hold an interview. She finally arrived with her daughter, recognized a PPAT member, and the hill tribe chief explained what was happening. She consented to do the narrative. The female PPAT member acted as translator. As the narrative progressed, Na disclosed how she had told the community that she had contracted HIV/AIDS. It became clear as she spoke that Na had two kinds of boundaries to cross in her life, one from the mountaintop Mong hill tribe to the central plain where she contracted HIV/AIDS, and a second boundary between isolation at the hill tribe and inclusion in the village community. At the time of the interview, she was still struggling to cross that second boundary, not only to be accepted in the community but also to make a vital visit to the hospital in the city. What follows is a transcription of part of our dialogue:
Interviewer: How old was your third child when your third husband died?
Na: Around 8 to 9 years old.
Interviewer: Did you tell your relatives that you had AIDS?
Na: They must have known.
Interviewer: What was their reaction?
Na: At first, the neighbors said it served me right because I chose the plains man to be my husband, who had more of a chance to have AIDS. I did not know whether he had AIDS or not, but he must have had it because he never recovered from his illness.
Interviewer: So the community knew that you had AIDS?
PPAT Member: No, not yet. They just knew that she was sick. They suspected.
Interviewer: Did she keep it a secret?
PPAT Member: (to Na) Did you tell anyone after you knew the result of the blood test?
Na: I told all of my relatives.
Interviewer: How about the community?
Na: All of them know.
Interviewer: How did they find out?
Na: I told them myself, and they got frightened.
Interviewer: And what did you do then? Isolate yourself or go out somewhere?
Na: I shut myself off from the world and didn’t go anywhere.
With PPAT’s encouragement, Na had decided to cross boundaries, from isolating herself to integrating more into the community. The Mong hill tribe chief helped Na by learning to understand her needs and helping her to reintegrate into the hill tribe. Na also hopes that, unlike some of her friends who also married plains men and then died of AIDS, that she will be able to live a healthy life and regain her sense of self-worth.
I discovered, however, that Na had not participated in any HART free drug program during her isolation, and so the next step in her path to recovery was to go to the hospital in the city for proper health care. Yet, like other HIV/AIDS infected members of the hill tribes, she faced barriers: barriers of time, distance and expense. To reach the hospital, she would need to travel down the curvy, steep, dirt mountain road, catch a long bus ride to the city, and wait for the doctor in the HART program to see her and prescribe the medicine, assuming that the HART drug was available at the time. She would also need money for the bus fare, food and lodging. But despite these challenges, the PPAT members and the hill tribe chief encouraged her to move forward.
Meanwhile, Na complained of a sore throat. The HIV/AIDS woman from the plains who had turned her back on me told Na she could ease the soreness by mashing lemon grass stalks, boiling them, and drinking the resulting tea. Both PPAT members agreed with the advice and promised to bring Na more herbs. After receiving all this care and support, Na’s face began to brighten, and she started sitting up a little bit straighter.
Another Inspirational Episode in Pre-Production
My pre-production team and I went to the Center for Empowerment in Chiang Mai. There, I met Jittra, a woman from the plains who had been living with HIV/AIDS for a long time. She drew me in with her story. She told us that she had contracted HIV/AIDS from her husband, after which she lived with fear, guilt and paranoia. She suffered from depression and had difficulty concentrating, which severely affected her work as an artist. However, she told me about the growing bond between her and her young daughter. Whenever she was feeling ill and had to lie down, her daughter, before going off to school, prepared her medicine in a traditional northern bowl called Khan Tok. Jittra also explained that her daughter was sometimes teased at school because of her, but that her daughter stood up for herself, which made Jittra very proud. Jittra also told me she tries to relieve her physical pain at night taking a sharp knife to draw and cut out objects and figures she draws on pieces of paper. This performance ritual gave me a poignant idea for my film because it represents the Buddhist practice of relieving bodily pain through deep concentration and meditation.
Some Final Thoughts
Women with HIV/AIDS in the village on the plains are often forced to take work that doesn’t pay enough for them to live on. Since our society wishes them to remain invisible, many end up doing handiwork such as needlepoint and crocheting while secluded in their homes. They are discouraged from earning a more lucrative living by selling meat or produce in the public markets because of our culture’s fear of contamination.
To help overcome their feelings of isolation, the women with HIV/AIDS on the plains gather together once a month to form a community group. Their project is to produce paper flowers, which they sell to temples to be used in cremation ceremonies. One woman spoke about the irony of creating these flowers. While making them, the women are reminded of their own deaths, where a similar flower will be used. But while gazing at the flowers on the shelf, I realized that these female activities are part of their healing process because, as they continue to make the flowers, death becomes normal for them. Interestingly, I felt no sense of death around me while visiting the community house where the women do their work.
In my film, I shall show that the body can help overcome HIV/AIDS by enacting the disclosure of its illness to family and community. Women can also empower themselves by dramatically reenacting and re-experiencing the stories of their illness, by regularly taking anti-retroviral drugs, engaging in various other forms of artistic expression, and by taking part in community activities.
As a consequence, I envision these HIV/AIDS women taking on new social meanings for their lives. For example, their actions can help them strengthen their relationships with their family members. Moreover, instead of feeling trapped in the rigid role of wife and caretaker, they can instead accept being taken care of without guilt. They can also feel comfortable accepting help from their relatives taking care of their children.
I believe that my film will have political importance, as well, because it will represent women with HIV/AIDS who struggle to cope with their lives while maintaining their autonomy and remaining on the path toward liberation from both physical and mental pain – a goal that will be inspirational for all women with this terrible disease in other cultures throughout the world.