“All she can do is sleep and eat”
Profile by Armando Gallardo and Iain Guest (August 2015)
Ngo Gia Hue joined the Vietnamese army in 1975, the last year of the war. Efforts were already under way to clean up Agent Orange and Mr. Hue remembers moving “colorful boxes” at Da Nang airport shortly after the American forces had withdrawn. He also remembers seeing liquid leaking from the sides. He began to experience the AO symptoms – headaches and back-aches – after he left the military and returned home.
Mr. Hue lives today with his wife Tran Thi Thao and six children in the ward of Phong Hoa, one of seventeen wards in Tuyen Hoa district. The village is a long drive from Dong Hoi through spectacular mountain scenery that looks in places like the floating mountains from the movie Avatar. The Hue family house is large and leafy. Several dogs are sharing the courtyard with a long hammock and three motorcycles. One belongs to Ngi Thi Thuy, who guided our car in through the village.
This is new territory for AEPD. AEPD has established 37 self-help clubs throughout Quang Binh, but none are in this district. However, the needs are great. In this ward alone, 160 people receive government support for a disability and 30 are registered as affected by AO. AEPD has sent one of its most experience outreach workers, Mr. Hoc, who himself suffered a severe leg wound in the war, to investigate. Mr. Hoc has responsibility for seven wards in this district.
When Ngo Gia Hue first started suffering from headaches and pain, Agent Orange was largely unknown. It was not until he left the army and started a family that he felt the full weight of dioxin poisoning. Ngi Thi Thuy, 35, the first child and oldest son, was born without symptoms and is married with two children. Ngo Thanh Trung, 32, their second child, was also spared and has two children.
Ngo Thi Huong
Ngo Thi Huong, 31, the third daughter, was weak from the time she was born. By the age of 14, Huong could not walk and today she uses a wheelchair, provided by the Red Cross. Huong is sprawled out in the hammock when we arrive and barely moves during our visit. Not only is it difficult for her to talk, but she has trouble remembering. “My daughter was checked out by many doctors,” says Mr Hue. “We took her to the hospital several times, but they could not help.” Eventually, in 2003, a doctor diagnosed dioxin poisoning.
Mr. Hue began receiving 1.2 million Dong a month for his daughter Thi Huong in 2003. The misfortunes began to pile up. A fourth daughter died at the age of 18 months. Happily, a fifth child was born without symptoms and married.
Ngo Thi Than Nhan
The couple’s next child, Ngo Thi Than Nhan, was severely disabled from the beginning. Nhan, now 24, has never spoken and is able to do little except eat and sleep. She cannot even use a toilet. Her bowel movements are irregular and this poses a challenge for her parents who help her by pumping water into her rectum. Nhan – a tiny figure – lies on the bed in the recesses of the house while her mother feeds her.
Many of the AO victims like Nhan seem to live in the shadows. Armando and I feel a strong need to capture the image. AEPD has encouraged us to take photos, well aware of their power. The families all understand this. Still, we must take care not to demean our subjects and remember that they are people, not images, no matter what the camera says.
Mrs. Thao invites Iain to sit on the bed, and he accepts. Someone takes a photo. Feeding Nhan is an act of intimacy and communication as it is between any mother and child. Nhan brushes away the food when it is offered on a spoon, but Mrs. Thao perseveres and eventually Nhan eats, every fourth or fifth time as her mother strokes her cropped head. Mrs. Thao’s oldest daughter skips up and then leaves. We are told that Nhan reacts to the presence of her sisters and likes it when they play with her.
The couple’s seventh child, Ngo Thi Toan, now 18, has also been severely affected by Agent Orange. Toan is very small, like her two older sisters, and speaks very slowly. She sits in a chair on the deck and reaches out for my hand almost absentmindedly. Her fingers snake in and out of mine, and she sits quietly as we interview her parents. “She understands, but she has a short memory” says her father.
In Need of Money
Ngo Gia Hue and Tran Thi Thao lived with his family until the Red Cross built the house they now occupy. The government provided them with 1,500 square meters of land in 1989 and this land is now their main source of income apart from the compensation they receive from the government for Mr Hue (1.6 million Dong) and his three affected daughters.
The family produces rice and a buffalo would greatly increase their productivity and income. Buffaloes cost 25 million Dong and it takes about two years for the animals to produce offspring that can be sold (for 17 million Dong). But in the meantime, Mr. Thuy could use the buffalo to work his fields, or rent the buffalo out to other small farmers. He would use the additional income to build a better toilet and repair the roof. He would also like to see whether an operation might help his daughter Nanh to control her bodily functions.
While a buffalo would ease the pressure, it would not also solve the challenge of coping with three seriously disabled daughters. Mr. Hue dreams of sending his daughters to school and he has tried to register them many times, but without success. Their prospects are not improving.
Meanwhile, his wife is left with the full-time job of caring for the girls. There always has to be one adult on hand, around the clock. Given this, Mr. Hue is deeply interested by AEPD’s plan for a community group in the ward. “I would like to join,” he says. “We could share information and learn a lot.” But he also knows it will not be easy. Two of his daughters have attended self-help clubs in the past, but the cost of transport was high and the girls needed constant attention. Mr. Hue and his wife and more than willing to try again.
Good News for Ngo Gia Hue and Tran Thi Thao
Update by Jacob Cohn (June 2017)
From Mai Thi Loi’s village, we head east, toward the coast, and descend from the mountains again to reach the home of Ngo Gia Hue, Tran Thi Thao and their daughters. It’s about an hour’s drive, not including a stop for lunch. This family also lives in a small village, at the end of a long dirt road. It’s still an agricultural area, and noticeably hotter than up in the mountains.
Ngo Gia Hue greets us as we walk up to his home. It’s a much bigger, airier place than Mai Thi Loi’s house, and feels much lighter and more welcoming. We sit down with Ngo Gia Hue in his front yard, surrounded by piles of peanuts, which is the family’s main crop. Tran Thi Thao, Mr. Hue’s wife, greets us from inside the house, where she is caring for her daughters Nhan and Toan. Mrs. Thao’s legs are not in good shape, we are told, and she walks on crutches while caring for her daughters.
We hear a little bit of the family’s story, already told by other AP fellows, from Mr. Hue, who does the talking during our conversation. Mr. Hue fought in the war and was exposed to Agent Orange; as with Mai Thi Loi’s family, the poison’s effects appeared in his children seemingly at random. Mr. Hue has had seven children with Mrs. Thao—the fourth died in infancy, but the first, second, and fifth were born healthy, and grew up to have families of their own.
Huong (their third child, now 33), Nhan (the fifth, now 26) and Tuan (the youngest, now 20) were not so fortunate. Mr. Hue tells me that all his children were healthy, normal babies, but as they grew up their mental and physical disabilities became more apparent. Today, all three are afflicted with severe dwarfism, have limited mental capacity and speech (Nhan has never spoken; the others can say a few words), and have a difficult time walking without assistance.
It’s somewhat of a shock to see Mr. Hue’s daughters and realize that, legally, they are all adults. I would have assumed them all to be preteen girls if I met them on the street, but Nhan is actually my age and Huong is several years older—I find it difficult to process that mentally. As we begin our conversation, I see one of the girls lying on a nearby hammock; this is Huong, the oldest. Huong doesn’t leave the hammock during our visit (I’m told she uses a wheelchair), but will sometimes absently looks over at our table for a moment before returning to our own thoughts. I once again find myself wondering how much of our conversation she understands. The other daughters, Nhan and Tuan, stay inside with their mother as we speak with Mr. Hue.
My visit marks a happy occasion for this family—AP donors have raised enough money to buy them a breeding cow and a calf, which I’m hoping we can deliver before I leave in August. The family had their own cow years ago, but had to sell it to pay for the education of their oldest daughter (who is healthy and now has her own family). According to Mr. Hoc, our AEPD outreach worker, the cow can bring in an extra 100,000 Vietnamese dong (around $4.40) per day for Mr. Hue, both by renting out the cow and using it to work on his peanut farm; the calf will eventually be sold. This will be a significant step up for this family, and a grateful and optimistic Mr. Hue tells me that the extra income from the cow and calf can be used to buy much-needed medicine for his daughters, which will help make their lives more bearable.
However, Mr. Hue tells me that even after receiving the cow and the calf he is unable to effectively treat Nhan, the sickest of his daughters. He can get medicine for Nhan from the hospital in the district, but it doesn’t help much, he says. Nhan has a stomach problem that requires surgery to fix, and Mr. Hue tells me that he’d originally planned to use the money raised by AP for this—he eventually realized that the surgery would be more expensive than he’d thought. In addition to the cost of the procedure itself, he’d also have to pay to bring Nhan to a larger hospital in the city of Hue, around 150 miles away; the local hospital can provide basic treatment but doesn’t have the resources to perform this kind of surgery. Now Mr. Hue wants to breed more cows he can later sell, and eventually save up the money for Nhan’s surgery; this could take a long time, though, and he’s hoping for more support. His other daughters also haven’t been doing very well—Huong was hospitalized last February for a goiter and other skin problems.
I ask for more details about where the family is financially, and Mr. Hue tells me that he’s really hoping to get the cow and the calf by the end of this year. That way, he can sell the calf next year for 12 million Vietnamese dong (around $525) and breed the cow again sooner. Once again, I’m powerless to promise anything, only telling Mr. Hue that I’ll do whatever I can to make sure his family gets that money.
Since our visit last year the family’s roof has been fixed, thanks to a donation from the Red Cross, but Mr. Hue tells me he still has loans to pay back for other repairs. He’s also raising peanuts, but he says he only expects to earn around 7 million dong from his peanut operation this year—that may sound like a lot, but Ngoc adds in a worried voice that it’s a very small amount to support a family (just over $300). Mr. Hue has a few chickens (who skitter around the yard as we talk) and a dove, but he tells me they haven’t been that profitable; he hopes to buy more and scale up his business.
Mr. Hue seems optimistic about the cow and calf, assuring me that those resources will be a big help to his family. Yet even after a leg up toward building a stable source of income, the family will still be relatively poor, Mrs. Thao’s legs will still be in bad shape, and Mr. Hue’s daughters will still be sick, with little hope of significant improvement. I’m reminded, once again, that when it comes to something like Agent Orange there are no truly happy endings, no triumphs of adversity. Disabilities like those affecting Mr. Hue’s daughters can’t be cured—all medicine can do, all caregivers and groups like AEPD can do, is to make people’s lives easier to cope with. The cow and calf won’t fix everything, but at least the family will have less financial pressure on them because of AP and AEPD’s support. That’s something, anyway.
Before getting up to take pictures I ask Mr. Hue about how the community has treated him and his family, and he is quick to assure me that people are very understanding, and that they pitch in to help his family in times of need. But he adds that this is a poor area and there’s only so much help his neighbors can give, and only so much time they have to spare for his family. He does say that he’s very active in the local support group for disabled people, a project run by AEPD that creates communities of disabled people in each local commune. Mr. Hue tells me that he’s received training in animal husbandry and community-based rehabilitation through the support group, which has helped his family and his business a great deal. It’s a nice reminder of the scope of AEPD’s incredible work, of which the Agent Orange project to which I contribute is only a small part.
I photograph Huong and then go inside to photograph the other two girls with their mother; they don’t seem enthusiastic but also don’t resist being part of the picture. I’m told that during AP’s visit last year they had been much shier and refused to be photographed. Maybe this is a sign of improvement. As I prepare to leave Mrs. Thao and Mr. Hue both shake my hand and thank me; Mrs. Thao seems tired and frail, but Mr. Hue, though an elderly man, seems healthy and in fairly good spirits. I leave hoping that we can get the cow and calf to this family soon, to ensure that their daughters can get the care they deserve.
One postscript for this visit: I did not pick up on this at the time, but Dat, our associate, later tells me that the family only has one electric fan in their home to stave off the heat, and during our visit they brought the fan outside to cool us off, leaving Mrs. Thao and two of her daughters inside the sweltering house. That day’s weather was notably hot—I hadn’t been drinking enough water, and by the end of our visit I was having trouble remembering my questions—and thinking about those people giving us their only means of staying cool made both Dat and I feel a bit guilty, and even more determined to do what we can to help them.
Update by Karen Delaney (January 2018)
Good news! The cow that AP gave Mrs. Hue in the summer of 2017 had a baby calf very recently. Mr. Hue will wait one year for the animal to grow and then sell it for 8-12 Million Dong ($350-525 USD). The family uses the cow for farming (rice, corn and peanuts) and sell fertilizer, which brings in about 1 million dong per month ($45).
They are very thankful for AP/AEPD and the whole family seems in good spirit. The girls, Toan (21) and Huong(33) are outside doing the laundry when we arrive. They both stop to join us. Toan jokes with her dad that the laundry basket it heavy. Huong goes to the hose and keeps playing with the water, even though it is a very chilly day. After about 10 minutes, she joins her sister and sits by us. Ngoc, my translator, tells me that they used to be very shy, but that was not the case this time. Huong keeps smiling at me, while taking care of her sister Toan. The third child, Nhan, is inside the house in her bed.
Last time AP visited, in July 2017, the mother, Mrs. Tran Thi Tao had just had a small stroke, which damaged her leg. While she is still not completely recovered, I’m told she is doing much better. However, not well enough to accompany the dad when he takes his daughters to the doctor.
The situation of the daughters, three of whom are AO victims, hasn’t changed much. They all suffer from Dwafirsm. Mr. Hue tells me that Toan has a problem with her stomach (which is disproportionally big for her small size). Huong has problems with her neck and sometimes gets headaches. Nhan, who is the most fragile, has problems with her bowels. I asked the dad about the possibility of surgery to fix her bowels but he tells me that surgery can only be done in Hanoi, and it is really expensive. Moreover, if he goes, there will be no one to take care of the other two daughters, as mom is incapacitated. Their two other children, who are healthy, are both married and live far from them.
Mr. Hue tells me once again that he is very thankful to us, because the income from the cow pays for medication for the girls. He tells me that when he sells the calf, he wants to build a new bathroom for the girls, to fit their needs. Because of their small size, they have difficulty using the regular bathroom they currently have. He also plans to use the money to rebuild the cow shed, in order to protect the animals from the cold weather. Lastly, he says he will use the extra income “to bring more food to the girls”.
I ask to take pictures, and Mr. Hue invites me to the house, takes Nhan from the bed and brings her outside for a family picture. Nhan notices we are there but doesn’t react much. She hugs her dad tightly. Huong puts her arms around Nhan and keeps holding Toan’s hand.
I ask to take pictures of the animals, so both Mr. Hue and Tran Thi Tao take me to the shed. They show how they make the animal’s food, and then feed the three animals (one cow and two calves).