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The reality of HIV/AIDS in Haiti is that its impact is being carried increasingly by women. Indeed, while men may be the ones who are unknowing carriers of the virus, it is the women who are being diagnosed in large numbers as they are the ones who get pregnant and are thus likely to be tested for the disease while getting prenatal treatment. As a result, women dominate the NGOs, grassroots agencies, and other medical facilities in Haiti that treat HIV/AIDS. And it is women who are faced with the burden of caring for children who have contracted the disease at birth, and since women still carry the weight of the responsibility of feeding households that include men, they are the ones who come face to face with the economic and social challenges that come with this disease. Many women become the caretakers of the husband and male partners who become sick because of complications related to HIV/AIDS. They have to deal with the basic costs of caring for these men, they have to know the medical system so that they can help their partners, they have to carry the brunt of the stigma and ostracism from their community, both for being associated with the disease and for being foolish enough to stay with their partners.
The young women who contract the disease do so very often because they are in relationships with men that are rooted in their need for financial support, men who are likely to have multiple partners. The use of condoms can be a challenge for women in such situations—women, that is, who have more than one partner and whose partners are not aware that they have these partners. Women who contract the disease face a great deal of censure for their promiscuity, though promiscuity seems like the wrong word for what are arrangements made from economic necessity. But more shame is heaped on women than on men. Thus secrecy is something they strive for, and this secrecy leads to significant levels of stress, compromises and ultimately, the perpetuation of the disease. The women I have met in Haiti who are living with the disease are often stressed and are carrying the responsibility of trying to make ends meet for themselves and their families while coping with the impact of the disease.
It is this reality that struck Malia Jean when she became one of the clients of POZ Haiti (Promoteurs Objectif Zéro Sida—Promoters of zero AIDS and active NGO with many centers in Haiti), and GHESKIO (The Haitian Group for the Study of Kaposi's Sarcoma and Opportunistic Infections), organizations that served the needs of people living with HIV/AIDS. She discovered she was HIV positive when her husband became ill. He was diagnosed with the disease and she later found out that she was also positive. Despite pressures from many to abandon her husband, (after all, it was his promiscuity that led to his sickness and to her illness), she stayed with him, cared for him, and watched him die slowly and painfully. In the process, she became better acquainted with the stigma that afflicted people like her even in the safe place of her church. She also found herself among many women dealing with the burden of this disease. As a client of these organizations, she began to see clearly that there was a special need among women to have the kind of support that only women can give other women, as they struggle with the disease.
Malia Jean chose to turn her illness into a mission, a ministry for other people. She was convinced that her life had been spared so she could do God's work. When she got the news, she was convinced by the Spirit that she was not going to die. Her friends shared her faith. And even as she became ill and had to start the antiretroviral treatment, she held onto the belief that she was going to live on to do the work she was called to do.
She formed an agency for women infected and affected by HIV/AIDS and in the process, on the basis of the kind of help that she had been given, started to formulate ways to give that help to other women.
"This is my own agency, it is not an NGO. AFHIAVIH (Association of Haitian Women Infected and Affected by HIV). I am a small organization and we work without funding. We started at POZ and come from POZ. It was not our choice, we tried to get funding and we wrote a lot of letters to try and obtain funding from international organizations but had no answers. The reason why I founded the association is because I noticed in POZ, when they take in people who are affected by HIV, most of them are women. And in all the struggle against HIV/AIDS in Haiti, women are the most affected. So I decided to found an association to go along with those women in that struggle. Not only for them to be a part of it, but also to fight for their own legal position: the right to go to school, the right to go to work, the right to find medicine, the right for the children to be cured."
On the evening of January 12, 2010, what was a thriving grassroots agency, formed by the enterprise, commitment and energy of a woman living with the disease, was thrown into a spin. The building that housed the offices of the organization, AFHIAVIH, was destroyed, taking out most of the computers, the telephones, and completely crushing the furniture in the rooms used for counseling, for focus group meetings and staff meetings.
When I met Malia Jean, it was three months after the quake, and she was living in Ganthier, a small village community an hour outside of Port-au-Prince. She had lost her home in Port-au-Prince, she said, and she was displaced. The house itself was not completely down to rubble when we passed by it a few months later, and it seemed occupied. Malia Jean would likely have moved out like so many Haitians because of her nervousness about staying in a house that had damaged by the quake. Others have moved out of Port-au-Prince because some landlords evicted tenants after the quake because they were unable to pay their rent; many people lost jobs and other sources of income because of the quake. It is not clear what the circumstances of Malia's departure from the home in Port-au-Prince were, but what is clear is that they related directly to the earthquake. She moved to her family's farm in Ganthier where her sisters and their families had also moved to join their parents and other family members.
In the family compound in Ganthier, tucked in about a mile from the main road in the middle of a large stretch of corn fields, there is a four-room bungalow, a large mausoleum set like an annex beside the bungalow, and two tents in the style of the aid tents distributed to people by international NGOS, tethered to three thick-leaved mango trees. Malia stores some of the rescued equipment in one of the tents, along with the goods that her fiancé used to sell but has stopped selling since his business slowed after his medical problems and the earthquake made it hard for him to continue working. Her son also sleeps in that tent. Her sister shares the other tent with her family. They live as a big family in the compound. When we were there, Malia's nephew arrived in a rugged SUV to have a Sunday dinner with the family and to bring them up to date on his exciting and unsettling life in Port-au-Prince.
From here, Malia tries to run her agency. It is difficult since she has no real resources to do so. It is too far from Port-au-Prince for her to make the journey each day, and she has nowhere to have her support group meetings or conduct her counseling work. A secure place with some privacy is critical for people living with HIV/AIDS. Even a visit to someone's home by someone who is known to be a worker in HIV/AIDS can expose the person to ridicule and ostracism. From here, Mali tries to stay on touch with her clients by phone. She visits POZ on a regular basis as she continues to work with them as a peer counselor, but the journey to and from Port-au-Prince is lengthy, and expensive by public transportation. What took us just over an hour by car, takes Malia almost three hours by public transport, and that is outside of the most congested hours.
"I need a car and I need a venue for our center. Those are the two things we need," she says when I ask her to state what her most pressing needs would be. The rent for a building would be about forty thousand dollars a year. She is not sure how this amount of money will materialize, but she is determined to continue the work that she is doing.
Malia Jean has that quality about her—a dogged resilience that while recognizing challenges, remains focused on what can be done rather than on what can't be done. Whenever we talk about her more personal project, which is getting remarried, she glows and giggles. She wants to get married. She believes this is what God has given to her. The relationship with her fiancé is not one she would have leapt at. In fact, the way they both tell it, this is as close to an arranged marriage as a woman and man of their age could have. The broker in this instance was a doctor who had worked with Malia for some years. The doctor told her that she needed to have a husband. The reason was simple: if she hoped to do work abroad, traveling to other countries as a speaker on HIV/AIDS in Haiti, she needed to have someone who would wait for her at home and welcome her. She was too much alone and it was not a good thing. She was not sure about this, but was open. Then one day the doctor recommended her to work with a man who was living with HIV/AIDS and who was extremely sick.
According to Malia's fiancé, when he met Malia he was quite ill, quite depressed and in his remarkably pragmatic way, quite ready for death. Indeed, he found the illness a decided inconvenience and could see no logical reason for him to continue to live. He had already attempted suicide unsuccessfully, but he was quite sure he would not fail the next time. Malia cared for him, he said. And she convinced him that there was more life in him and that it was worth living. He describes her as his archangel. "When I married my first wife, I thought I had married an angel. But I was wrong. She was not an angel at all. But now that I have met Malia I know I have met an archangel." Such hyperbole seems out of character from this man who prides himself in being practical, different and happy about being seen as different. Malia describes him as being somewhat strange, especially as she tries to explain why her son is still struggling with the prospect of this man as his step-father. He is kind, he is funny, but he thinks about things in a strange way. He is a man of wide ranging experiences. He speaks English but prefers to answer my questions in Kreyol. He is economical and pithy in his responses: "When people say I am different, I am happy—I don't want to be known as the person who does everything like everyone else. People who do that are likely to make mistakes." So his passion for Malia, his carefully selected language to describe her as someone who saved his life and who he would not likely have chosen to be with had it not be ordained and planned by God, all point to this deep, abiding, pragmatic affection that they seem to share. Malia cares for him, she puts the drops in his glaucoma-damaged eyes, she brings out his antiretroviral drugs for him to take and she lies on her stomach on a makeshift bed on the verandah as he responds to my questions. There is a small smile on her face. She is amused by him and filled with a great deal of affection and tenderness for him.
Malia wants to have a relationship again. A sexual relationship. As a Christian, she won't have one until she is married, and she teases us that we should get this man to marry her right away. When she is explaining her current proposed status she puts it quite clearly as a question of companionship and sexual partnership. "I do not yet have a man with whom I can have sex with," she says. In playful banter about a concoction made of pureed breadfruit and other ingredients, he tells us the name of the juice, "Atomic." We all laugh. He says he has not had to use Atomic in a long time, and then she says, "But he soon will have to." He grins sheepishly. Malia's smile is neither bashful nor lewd—it is just a frank and honest look, one that suits her character so well.
It is easy to see why people admire her and see her as a figure of strength. But on the day after we saw Malia, we met with Dr. Marie Mercy Zevallos, the director of the POZ health center in Port-au-Prince who has worked with her for a few years and who continues to work with her through POZ. She told us that Malia had been quite ill over the weekend after we had seen her and she had not been in for a day or so. My mind went to the time we spent with her, how she laughed, smiled, spoke boldly about her hopes, confided about her son's struggles and her own personal dreams, and then allowed us to follow her along the meandering path through various rural communities, then across the main highway, to her church—a makeshift tent pitched beside the badly damaged façade of their original church. We watched her praise her God, dance, raise her hands, and become completely consumed by her rituals of communal living with a congregation of the faithful and resilient. Afterwards she pointed to the church building and to where the congregation now had to worship and she asked me, for the first time, for help. She said, "They need help to rebuild the church, see what you can do."
Photos for this post shot by Andre Lambertson.