During his 2015 fellowship in Vietnam, Armando made several visits to the family of Nguyen Van Xoan and his wife Pham Thi Do. Each time he would come away feeling that the burden of Agent Orange falls most heavily on mothers. It’s not that fathers are uninvolved – just that mothers seem to feel the anguish more deeply. Mothers are the primary caregivers. They also need caring for.
Nguyen Van Xoan is a former veteran. He was poisoned by dioxin after he drank contaminated water while serving in the army in Quang Tri province. He remembers it like this: “I saw a plane drop spray over the forest and saw the forest burning. I covered my face. I drank the water. I thought the water came from the rain. It was fresh and did not seem dangerous.”
Nguyen Van Xoan (left), his wife Pham Thi Do and their sons Toan, center, and Trung. Their daughter Luyen is too ill to leave her room. Toan produces model buildings out of chopsticks.
Mr Xoan was invalided out of the army in 1979 because of health problems that seemed minor at the time – headaches, coughs, fatigue. But he did not improve and in 2007 he was certified as an Agent Orange casualty by the Vietnamese government. That year he began to receive compensation of 2 million Dong a month.
Mr Xoan and his wife Pham Thi Do had their first child soon after the war ended. The child died from “brain damage” which they now assume was linked to Agent Orange. The second child died at birth from a miscarriage. The next two children were born healthy and went on to marry. Their photos hang proudly on the wall.
Their first child to survive with AO complications, Trung, was born in 1979. Trung enjoyed a normal childhood until his legs began to fail him. Today, the arches under his feet are malformed, and this prevents him from walking properly. When we arrive to visit with the AEPD outreach worker that oversees this family, Trung shows us photos of his father visiting the graves of his friends who fought during the war but did not make it home.
Trung’s younger brother, Ngyuen Van Toan, born in 1995, suffers from similar complications, although his legs are more severely malformed than those of his brother. For a while Toan tried to walk, but as his legs got worse his classmates began to make fun of him. This left his parents with no other choice but to take him out of school. A few months passed and the doctor informed them that Toan would need a wheelchair for the rest of his life. Toan and his brother also share the added burden of hemophilia, which Toan contracted at the age of five.
Toan suffers from a deformity in his legs and hemophilia. He sold his first model building to AP.
Toan has much to complain about, yet he shows no resentment and has a winning smile. He is proud of his father – veterans in Vietnam are treated like heroes – but he also wanted desperately to stay in school. “I do not blame my father,” he says. “I am proud of him. But I faced many social barriers at school. Students did not play with me. I then developed a problem with one leg and was forced to use a cane. My grandfather used to take me to school. Then my other leg went bad and I had to leave school altogether.” He was 15, and just entering grade 9.
Undaunted, Toan turned to handicrafts. Helped by a mentor from the AEPD, who also attends the same self-help group, Toan learned how to make objects from simple materials that are easily available at the local store.
Toan has turned the house into a personal studio, with chopsticks, glue and varnish spread neatly on top of a table. He made a wonderful model of Hue University – the oldest in Vietnam – from hundreds of chopsticks and sold it to the Advocacy Project during our visit. It took three days to make and was his first sale. Quite an occasion! Toan’s dreams don’t end there. “I want to make web pages so that I can work from home,” he tells Armando.
Toan’s main problem comes from a lack of a computer and internet connection, but he does not expect that to hold him up for long. “I’m already reading about it from books I get from the market,” he added.
Toan’s older sister Luyen is another Agent Orange victim. She was born in 1992 with cerebral palsy. We meet with her on a stormy day as she lies in bed, pressing her nails into her hands and grinding her teeth. This, says her mother Pham Thi Do, is a sign that “the weather is about to change.” At times, Luyen squeezes her nails so hard that they cut her palms. Her parents give her a folded carton to hold in her hands to protect her from further cutting. Mrs Pham welcomes Armando with a smile when he enters Luyen’s room, and she continues to wipe her daughter’s face with a damp cloth.
Pham Thi Do and her daughter Lien
Soon after, Mr. Xoan silently peeks into the room. Armando takes his photo and feels like crying. Mr. Xoan seems lost. His wife, in contrast, is totally engaged in caring for her daughter. “Taking care of Luyen is a full time job, 24 hours of the day,” she says. Indeed, for the next few hours we see how close the bond is between mother and daughter. Luyen caresses her mother’s arms and shoulder whenever she can, as if showing her affection and gratitude for the sacrifice made by her mother.
As Armando looks for anything that will help tell the family story, he notices a photo lying on a desk. The children are shown standing straight and tall, which is very different from the way they are in real life. Armando inquires, and Mrs Pham replies: “A friend of mine took our faces from different photos and photo-shopped them to the bodies.” Perhaps this is the way Mr. Xoan and Mrs. Pham want to remember their family: healthy, looking good and with no sign of the damn herbicide that changed their lives forever.
In one of Armando’s later visits to the family, he finds that neither Mr Xoan, Toan or Trung are not at home. “They went to Hue for their monthly hemophilia treatment,” says Mrs. Pham. The treatment costs 6 million Dong ($270.6), which is a huge amount, even though 80% is covered by insurance. On Armando’s next visit Xoan is at home but the family buffalo is nowhere to be seen. “We had to sell the buffalo to pay for the hemophilia treatment of Toan and Trung,” says Mr. Xoan. When one considers that this family only receives 5.3 million Dong in AO compensation a month, it is hardly surprising that they are constantly selling assets to cover the medical bills.
Mrs Pham’s work day begins at 5.00 am in the fields
By this time, Toan has returned from the treatment in Hue. Luyen, as always, is lying on her bed in the darkened room. But this time Mrs. Pham and Trung are not to be seen. “My son, Trung, is still in Hue because he wasn’t doing so well when he was first seen by the Doctor. My wife is out in the fields harvesting the rice” says Mr. Xoan.
We notice rice seeds scattered all over the floor. It had been harvested the day before. Harvesting happens twice during the year and Armando had been hoping to take video footage of rice paddy, so Mr. Xoan agrees to take him out to meet his wife in the fields.
Up to now we have seen Mrs. Pham as a caregiver, mother and wife, but here she is in another demanding role. Her day started at 5 am and she has been out in the sun ever since, working the fields as if there was no tomorrow. We all go back to the house and Mrs. Pham immediately begins caring for her daughter Luyen. Armando is amazed at her strength.
Mrs. Pham explains that Trung is still in the hospital in Hue. Most of the AO families we meet are indoors because of their limited mobility, but here is a chance to meet a family member away from the home. Armando asks if he can visit Trung at the Hospital in Hue, which lies three hours from Dong Hoi. The family agrees and off they go. Trung looks healthier because of the blood transfusions he had been receiving, but is also worried.
Mrs Pham’s son Trung in hospital for a blood transfusion
“There’s a shortage of blood at the hospital so I might not get one for a few days,” he says. Indeed, when Armando asks the Doctor when Trung will get his next transfusion, he is told that no one knows because the availability of resources is so unpredictable. Armando then remembers something that Toan, Trung’s younger brother, had said at the house: “During the week I was in the hospital, I saw three people who died.” Apparently this is quite common. After some back and forth Armando is told that Trung would not be getting any transfusions over the weekend. Armando had no option but to leave, hoping for the best.
Armando returned later to Mr. Xoan’s house to say one last goodbye. It turned out to be a very emotional exchange. “This family will forever stay in my heart,” wrote Armando later. “I know that Linh, my interpreter and co-worker, feels the same. I hope we meet again soon.”