The making of a not so ordinary hero
24 August 2006
by Michael Coleman
Ha Noi, Viet Nam: In a country where more than 100 people are infected every day with HIV/AIDS, where it is still viewed as a “social evil” and a problem of drug addicts and sex workers it is perhaps surprising that a slight, soft-spoken 26-year-old mother and former tailor has become one of the most vocal and active people fighting for the rights of people living with HIV and AIDS in Viet Nam.
In 2001 Pham Thi Hue was a newly-married, 21-year-old seamstress, pregnant with her first child. It was the beginning of an incredible new chapter of her life. But it was in the hospital waiting to give birth that this chapter was rewritten.
Medical staff revealed that she was HIV positive and immediately put her in a quarantined ward. Suddenly even trained and educated doctors and nurses were reluctant to go near her. Yet all she could think of was the birth of her baby. Would it be infected? How did she become infected? After nine months of anticipation she was waiting to hear about two miracles: the birth of her baby and hopefully the news that he was free from HIV.
Hue’s son was born by caesarean section and was immediately treated as if he too was carrying HIV. Waiting for the test results was excruciating until finally, she learned that he was healthy. The test results were negative.
The news of the life of her son, more than anything, fuelled her determination to live. She learned that her husband, a regular intravenous drug user, had infected her, but she stayed with him. They would work through this together as a family.
The effects were immediate. Although physically she felt fine, emotionally her life was in turmoil. News spread fast in her neighbourhood in Hai Phong, an industrial port city about two hours from Ha Noi. Business slowed dramatically at the tailor shop, her family was isolated by the community and even her parents could not understand how their daughter could have contracted such an awful disease. Eventually, she and her husband had to move out.
“People think when you get HIV/AIDS that you’ve sinned somehow, that you’re guilty and that it’s your fault,” she says.
Now living outside the family home in a small apartment, life continued to be difficult. She and her husband faced constant discrimination, and even her young boy was labelled, ‘the son of a mother with HIV/AIDS.’ Despite the discrimination, Hue did not allow this to isolate her. In fact, she was becoming more interested in the disease and hungry to learn as much as she could.
In September 2002, Hue enrolled in a training course on HIV/AIDS. During the course, she had listened intently for nearly three days when something in her transformed, changing the course of her life once again.
“On the third day, I finally got the courage to stand up and explain everything about myself, and my story, including having HIV/AIDS,” she says. “It was the first time I had told anyone in public. The people there were shocked and scared but I told them about my life and they began to understand.” In the process she discovered that she felt better, she felt healthier. A few days later, she realized that she had gained two kilograms and could feel her strength return.
“It’s then that I realized the more I work, the happier and the stronger I feel. Happiness for me is in work.”
In 2003 her work led her to found the Flamboyant Flower Group with five other women with HIV/AIDS in order to support people living with HIV/AIDS in Hai Phong financially and emotionally. Since then some of these founding members have died, but many others carry on the cause and today the group is run by eight women with another 58 as members. All of them contracted HIV from their husbands.
Becoming a UNV volunteer
Today, back at the family home, a 26-year-old Hue still has no shortage of work to do. Her son, now five, is healthy and enjoying school, despite still facing some discrimination there from classmates. “But he’s stubborn, like his mother,” says Hue smiling.
Hue recently became a United Nations Volunteer supporting the Greater Involvement of People Living with HIV/AIDS” (GIPA) project, she continues to work with the Flamboyant Flower Group, and is regularly asked to attend workshops, make public appearances and speak to the press.
Sitting in her living room opened up to the noise of the street, she has just learned that an embassy in Ha Noi has turned down one of her funding proposals. She smiles and folds the letter back into its envelope. In Hue’s life, there is no time for set-backs, no use worrying about what has passed, only time to look forward. Besides, she has lots of ideas, and she knows there is lots of work to do to support people living with HIV/AIDS in Viet Nam.
There’s the motorcycle repair school for young people and orphans with HIV/AIDS, there’s the dance troupe and on this morning, she is waiting for a New York Times reporter who wants to hear her story. More and more, her voice and her story is speaking for the over 280,000 people living with HIV/AIDS in Viet Nam.
“I’m very confident speaking in front of people now. It’s important that they see that people living with HIV/AIDS are not useless and can do things that uninfected people can do.”
Hai Phong has one of the highest HIV/AIDS rates in the country (nearly 1.2% of the population) and over 8,000 reported cases, though the actual number is likely higher. Her Flamboyant Flower group has become an integral part of the community, working to take care of families affected by HIV/AIDS, buying them and their often poor families, clothes, food and just spending some time with them. With so many abandoned by their families and unemployed, many people are literally dying in the street. However, Hue and her colleagues do their best to ensure they die with dignity, collecting money from the community for a funeral, preparing the body, buying a coffin, holding a memorial and then taking the remains to the crematorium.
“In the last two months, there have been six funerals,” she says matter of factly. “We didn’t used to have men in the group, but when we have to collect the bodies, we recruit volunteers to help with the lifting. They also come to the funeral as it’s often only members of our group who show up.”
The Asian heroine
The need is clear. Despite an overall low HIV/AIDS prevalence rate, HIV/AIDS is spreading at a rapid rate in Viet Nam. The estimated number of people living with HIV more than doubled between 2000 and 2006 from 122,000 to 280,000. HIV/AIDS has now been reported in all 64 provinces and major cities of Viet Nam and it is estimated that one in every 60 households has a person living with HIV/AIDS.
The United Nations Development Programme (UNDP) is working to build the capacity and leadership of the Government and Communist Party in Viet Nam as they implement the country’s first National HIV/AIDS strategy.
“Effective leadership is essential in the fight against HIV/AIDS. We need to support people like Pham Thi Hue working on the ground, and we need to support good policy and a solid legal framework to encourage all society, especially those affected by HIV and AIDS, to get involved,” said Acting UNDP Resident Representative Subinay Nandy. “It is vital to ensure that everyone has easy access to accurate information, quality treatment and health-care services and, perhaps most importantly, is free from discrimination and stigma.”
This is an issue that Hue knows only too well. Often, the effects of discrimination and isolation are far more painful than the physical effects. In 2004, Time Magazine recognized her work to combat stigma and discrimination, naming her one of “Asia’s Heroes,” an international award that “spotlights ordinary people doing extraordinary things.” She is grateful for the award and says the attention it brought gave her more respect and access to important people and also greater opportunities to share her story with more people around the world. Her message and her story have in many ways, become the story for many people living with HIV/AIDS giving them a voice, inspiration and courage.
The award has helped her, but hasn’t defined her or her work. The work she does is about the future of her son and working to end discrimination against people living with HIV/AIDS. Even now, the award sits modestly tucked in the back of a cabinet in her living room, next to a box of tea and her son’s plastic toy car.