When I first met Nguyen Van Tuan in August 2015 he was a bright young guy with a twinkle in his eye who couldn’t wait to show me his latest creation – a model of the venerable Hue University which he had made from recycled popsicle sticks.
The fact that Tuan was also in a wheelchair didn’t slow him down. His room was littered with bits of wood, glue and other modelling stuff, and he was talking a mile a minute about how he needed a computer to sell his models in the US. I was happy to be his first foreign customer.
Tuan was even ready to chat about Agent Orange, which had put him in the wheelchair and was to take his life. He’d been a marked man ever since his father, Nguyen Van Xoan, was exposed to the herbicide while serving in the Vietnam War. Mr Xoan returned home to Quang Binh province and passed on dioxin poisoning to his children, presumably at conception. He told me that two of his seven children had died soon after birth. Three more – including Tuan – were ill.
Tuan picked up the story. He explained through an interpreter how the paralysis in his legs had started when he was around 15. Then came the cane, then the teasing and then the wheelchair. Eventually, his parents had to take him out of school.
Tuan described his dad as a “war hero.” But he had also loved his school and Mr Xoan seemed uncomfortable and maybe a little guilty as he listened anxiously to his son. We learned later that he and his wife Pham Thi Do (above) kept a photo of their children which had been photo-shopped by a neighbor to show their faces on healthy bodies.
I met several Agent Orange families that summer in Quang Binh province. But it was really after meeting Tuan that our group, The Advocacy Project, decided to help. In the three years since, we have sent several impressive graduate students (Peace Fellows) to work at the Association for the Empowerment of Persons with Disabilities (AEPD) in Quang Binh. Together we have raised around $15,000 for ten Agent Orange families, most of who have bought a cow. Helped by outreach workers from the AEPD, these ageing parents have managed their investments well.
Of course, we are only scratching the surface in a province where 26,000 people are listed as affected by Agent Orange. But whenever we had doubts I would think of Tuan. He seemed to be defying the odds.
One reason was that Agent Orange victims have little hope of recovery. Tuan’s older sister Luyen, 26, was struck by severe cerebral palsy as a child and is unable to feed herself or talk. She responds to abrupt changes in the weather by grinding her teeth and cutting into her palms with her nails. Mai Thi Loi, a war widow, gave birth to three sons. All suffer from dementia and Kien, 34, is so violent that he has to be chained to a wall. Le Thanh Duc’s three daughters are so incapacitated that Mr Duc has to move them to a new position every half hour or so.
This is what makes Agent Orange different from other remnants of war. Like landmines, Agent Orange was spread indiscriminately. But its poison discriminated in the worst possible way by skipping the soldiers and punishing their children. Many are now in their thirties and even the outreach workers at AEPD – who were severely wounded in the war and know something about the challenge of recovery – find it difficult to see how they can be “empowered.”
Tuan seemed different. Even in his wheelchair I thought that his skills, his optimism and the devotion of his parents would help him to pull through.
But Agent Orange is unforgiving. Like his older brother, Tuan suffered from hemophilia. In 2015, he was already receiving monthly transfusions at the Hue hospital. He seemed more listless during our second meeting in 2016 and suffered a major seizure in 2017.
Things seemed to get better earlier this year when my colleague Karen visited. Tuan had returned home and our buffalo had produced a calf. But most of the money had been spent on medical bills, added to which Tuan’s modelling equipment had been destroyed by a flood. Karen’s photo showed a deflated family. In the end it was the hemophilia that killed Tuan.
Our current Peace Fellow in Vietnam, Marcela, visited Tuan’s family last week to pay our respects and tell Tuan’s parents that we shared their sadness. Like Tuan, Marcela was born long after the War but she understands it much better now. As do we all. That may be Tuan’s final gift.
* Read Tuan’s full story
* Meet the nine other families supported by AP and AEPD
* Read Marcela’s blogs
Posted By Iain Guest
Posted Sep 14th, 2018