Profile by Karen Delaney, January 2018
Vo Thi Toa welcomes us to her house and offers some tea. She starts talking before I ask any questions and then begins to cry. Ngoc tells me she is desperate. She sits next to her son, Long, and holds his child, her grandchild on her lap. Nguyen Van Thuan, the outreach worker, sits with us.
Mrs. Toa’s husband joined the army before 1975 and was exposed to Agent Orange (AO). He died in 2005 from stomach cancer. When he was alive he received a compensation for being a veteran, but no AO compensation. Their house was given to them by the Vietnamese Association of Victims of Agent Orange (VAVA) and cost 20 million Dong (US$880).
Three of Ms. Toa’s six children are affected by Agent Orange. Her oldest son, Nguyen Thanh Nam (40) has cerebral palsy. He is confined to his bed and depends on his mother for everything. He was diagnosed by doctors only when he was 7. He receives 1.3 million Dong (US$55) a month as AO compensation.
Her second son, Nguyen Ngoc Thang (38), is married and lives with his own family, who care for him. He is also a victim of Agent Orange and suffers from peritonitis and cholecystitis. His mother tells me he has had five surgeries so far. He received 800,000 Dong (US$ 34) per month in compensation.
The Third son, Nguyen Thanh Long (33), who sits with us at the table, is very quiet and doesn’t say anything. He is married, with three children, and they all live in the house with Ms. Toa. His wife is working in China, but Mrs. Toa tells me she doesn’t send any money to them. The three children are unaffected by Agent Orange. Long started having epilepsy in October of 2016. Mrs. Toa sold the cow she had to pay for his care. They are working on the paperwork to list him as an AO victim. At the moment he gets no compensation. When he had his first episode, they took him to the hospital in Hue for treatment, where he stayed for six months. Now he goes to the local hospital once a month for treatment. While the medication is covered by insurance, the cost of traveling is not.
Mrs. Toa tells me that when she had a cow, she used it for farming in the rice field. Now neighbors and relatives sometimes help and bring them food.
After talking, we go inside to see Nam, who is paralyzed in bed. He is 40 years old and indeed looks older than the other AO victims I have met. He doesn’t seem bothered to see us there and does something that resembles a smile when I take out my phone out for pictures.
Mrs. Toa thanks me and gives me a tight hug. She then holds my hand as she walks us back to the car.
Update by Marcela De Campos, July 2018
I visited Ms. Toa’s family during my first field trip in early July. In January when Ms. Toa last met with an AP staff member her family had been considered a potential beneficiary for the Agent Orange Campaign. Today, eight months later, the family’s situation has worsened and AEPD has identified them as next priority beneficiary family.
Ms. Vo Thi Toa (left) is a 71-year-old powerhouse. We sit in her two-bedroom home donated by the Vietnamese Association for Victims of Agent Orange in the Bang Village of the Bo Trach District, Quang Binh. She is the head of her household and her family’s primary caregiver. Speaking softly yet firmly, she looks to her late husband’s, Mr. Nguyen, portrait every few minutes throughout our conversation. There is a discernible pain in her voice and we learn that Mr. Nguyen passed away in 2005 of stomach cancer.
He joined the army before 1975 and was exposed to Agent Orange. The couple had six children, three of which are affected by Agent Orange: Nguyen Thanh Nam (40 years old), Nguyen Ngoc Thang (38 years old), and Nguyen Thanh Long (34 years old). Their other three children are now married and have moved away to live with their families. They were not affected by Mr. Nguyen’s Agent Orange exposure.
Nam is the oldest son. He is the most severely affected by his father’s Agent Orange exposure. Nam has cerebral palsy and is quadriplegic. He receives Agent Orange compensation of 1.3M VND (~$55 USD) per month from the government. Nam spends the majority of his time lying on his bed. Ms. Toa carefully adjusts him every so often to prevent bedsores. She admits that caring for them is becoming more physically tolling.
Thang is married and lives with his family outside of Ms. Toa’s home. He suffers from peritonitis and cholecystitis and has had five surgeries so far. Thang receives 800,000 VND (~$35 USD) per month in Agent Orange compensation. Despite his physical ailments, Thang is doing considerably well thanks to his family’s support.
We spend most of the time discussing Long’s latest health challenges. He is sitting with us at the table but does not say a word. He has two daughters and one son, all of whom live with him and Ms. Toa. They climb over him, the sofa, and Ms. Toa as she speaks.
His wife works and lives in China but does not send them remittances. Ms. Toa explains that he has mental disabilities and epilepsy. The family went through all the procedures to get Agent Orange compensation for him in January 2018. Unfortunately, the state did not accept the application. They do not consider him an Agent Orange victim because his disabilities were revealed only a short time ago.
Long had his first epileptic episode in October 2016. Ms. Toa was forced to sell the cow that had been used to work in rice fields to pay for his six-month treatment in Hue. When Karen visited the family, Ms. Toa mentioned that their biggest expense with regard to his health condition was the cost of traveling. The medication Long was taking was covered by insurance. Fortunately, he is now able to receive treatment at the local clinic (meaning there are fewer traveling costs) but, and very unfortunately, the medication he had been taking is no longer effective. Long is now taking a new medication and it is not covered by insurance.
Ms. Toa bears the heavy burden of providing and caring for her family. She is keenly aware that they are all unable to work in the fields and is not currently engaged in any sustainable income generating activities (although she’d like to be). The family lives of the assistance from their neighbors and the state (i.e. Nam’s social allowance and her widow subsidy).
She has consulted with Mr. Tuan, an AEPD Outreach Worker, and would like to rear a cow. Having raised cows before, she is familiar and comfortable with the process. She feels cow rearing, more specifically, for calf and fertilizer sales, is the most sustainable form of livelihood for her family. The income generated will pay for Long’s medical treatment (traveling and new medicine), food, and other household needs. Without this business plan and the resources to implement it, Ms. Toa will continue to rely on the aid of her community and will not be able to generate a sustainable source of income for years to come.
The Agent Orange Campaign model works to provide a sustainable source of income for the beneficiary families. An income they can rely on for years to come that is either independent of other income-generating activities or not. If you read through her profile (above), you likely noticed that she had a cow and sold it to support her son’s medical treatment.
Even though she had every right and reason to sell her cow, this detail may be disconcerting to friends of AP being asked to support her next cow-rearing activity. But it shouldn’t be. Ms. Toa has steadily and (in many ways) singlehandedly supported her family for the last two decades. What she chose to do with her previous cow was her decision and her decision alone.
In this situation, however, Ms. Toa will be entering a partnership with AEPD and is bound to implement the business plan to its fullest extent for the next two years. The business plan helps implement the activity, ensures its longevity, and supports the beneficiary’s financial literacy and therefore long-term savings/investment. Mr. Tuan, the Outreach Worker, will check in with Ms. Toa periodically (as he does with all Campaign beneficiaries) on the successes and challenges associated with implementing the plan.
After the two years are over, Ms. Toa will be strongly encouraged to continue the cow-rearing model in the way that suits her best. For example, she may decide to sell the cow once it has produced as many calves as possible and keep a female calf. (See here for more information on the cow-rearing model.) However, because it is a partnership, she will always be required to obtain AEPD’s permission if she decides to sell the original cow for any reason. Thus, the partnership is an important part of the model as it holds the beneficiary, AEPD, and AP accountable.
Based on my observations and conversations, Ms. Toa is fully committed to the plan and to investing in her family’s future.
Update by Mia Coward, July 2019
It’s a Friday afternoon and we drive what feels like 30 minutes out of the city or downtown area of Dong Hoi. I have begun to learn that there are several communes and district within this province of Quan Binh. We pass over a small bridge and a beautiful lake where I also able to see the fields and mountains and then we passed the first church I have seen since coming to Dong Hoi. It was beautiful and the color beamed from the sunlight as it stood tall with gold like gates in the front. In the car the heat and sun are unforgiving, we try our best to hide our faces from it but it seems to beam straight through the window like a laser. We stop midway so that we are able to catch up to the AEPD outreach worker, who has to go ahead of us and let the family and officials know that we will be visiting today.
To get to Ms. Toa’s home you have to travel through a very narrow dirt road. Our driver seemed to have no worries as he drove backward to ensure we would fit through the narrow dirt road and then turn around to drive toward the home. This is very funny and a tad scary for me but he was so calm like he has done it a thousand times so I just sat in the passenger seat and continued to look out the window. We pull up to Ms. Toa’s home and get out.
Ms. Vo Thi Toa and her sons are a new family with AP and AEPD. Her husband, a military veteran, had been exposed to dioxin during his time in the service. He died in 2005 due to stomach cancer. Together they had six children; three of their children were affected from Agent Orange and three were not. Ms. Toa is the sole caregiver for her oldest son Nguyen Thanh Nam( Who is quadriplegic and has cerebral palsy) and now her third son Nguyen Ngoc Thang (who has epilepsy), along with her 3 grandchildren. AP officially decided to help them last July. With the help of AP and donors, they were able to purchase a cow and calf.
As we walk toward the inside of the home, I am greeted by the cow in the front yard, some small puppies running and playing, two chickens and some small chicks walking around. Ms. Toa seems to be in a very happy disposition. I let Ngoc and the outreach worker take the lead as Ms. Toa jumps right into the conversation and share with us that Long (her third son that lives in the house as well) is doing much better since our last visit. He has had two hospital visits but had was able to go to a private clinic and start taking medication for his epilepsy. He seems in good spirits and smiles at me while listening to the conversation. As we talk, the children are running around, laughing and playing in the house and the oldest granddaughter says hello to me and smile. Later in our visit, I realize that she can speak some English and I talk with her a bit about where I am from, how to pronounce my name and my age. She is so sweet and really friendly to someone who is pretty much a stranger in her home.
During the beginning, Ms. Toa shares with us that fluid has built up in Nam’s (her oldest son) legs and he has lost a lot of blood in his legs creating swollen and wetness around his knees and leg muscles. She would like to take home to the hospital but is worried that no one can take care of her home while she is away. When she speaks of his condition I can see her head hanging a little low than at the beginning of the visit. I can tell that she really wants to help her son but fears what will happen and who will help take care of her home. The grandchildren’s health is doing well and they are currently on a summer holiday. Long is doing better due to the care that he received in Da Nang. The oldest brother, who does not live in the home but also suffers from the effects of Agent Orange is paralyzed and continues to deal with pain from peritonitis and cholecystitis. Mrs. Toa has to walk everywhere, for food, to manage the animals, and help with her grandchildren. Because of this, she is struggling with some back pain and knee complication. If one of her sons has to visit the hospital she will ask neighbors to take them. She is the sole caregiver for her family and that has been weighing heavy on health status. Her other four children and relatives live very far from her home and work far from home so they are not able to visit much and help her.
She is able to manage the cow and a calf. The calf is growing well and healthy and the cow is actually 3 months pregnant. She is able to use the cow for fertilizer for the garden. Mrs. Toa tells us that she currently has no intention to sell the cow or calf. She will only sell the cow if she needs money for one of her son’s medical care. She currently has her 4th son come and help her take care of the cow and calf sometimes. She is also raising some chickens but they are not for selling, just for food every day. Because Mrs. Toa has pain in her knees she is unable to work in the rice field and so the chickens are a way to ensure the family has food.
Mrs. Toa still receives 1.5M VND in government compensation for her oldest son, 850,00 VND a month for death allowance( from the death of husband). Long can not claim for compensation because his effects from Agent Orange have just started in the last two-three years and it is hard to get recognition by the disability council for his epilepsy. Ngoc (AEPD Coordinator) asks the outreach worker about if it was possible to declare Long as an Agent Orange victim so the family can receive more money, but he told her that it is very difficult to get approved–especially since he did not show any symptoms until recently. It seems as though it is easier to acknowledge victims that have or show mental and physical disabilities or impairments then it is to understand more mental disabilities like Long has. The council for disabilities will assess the patients to see if they will get compensation. Overall I learned that it is a long and difficult process for victims to be compensated or recognized as Agent Orange Victims. However, about 3 months ago, with the help of the outreach worker’s help, they were able to get about 405,000 VND for his disability per month.
The only incoming income that Mrs. Toa is able to sustain is the government compensation. Sometimes she is able to get money from her other children but only when one of her sons has to go to the hospital. The government compensation is used only for daily costs. We move toward the part of the conversation that in many cases is the most difficult for families to answer, but we must ask these questions to see how we can help more families in the future. We ask about if she has taken out any loans and if she has any savings or interest in these things in the future. Mrs. Toa shares that she currently has a loan for 10M VND from when Long had to go to the hospital. Long went to the hospital twice in the past year so it cost 5M VND each time, she was able to borrow the money from her children so she has no deadline or interest. She will not be able to pay the loan back until she sells the calf. I also find out that selling a cow or calf has a lot to do with weather conditions. Mrs. Toa shares that if there is bad weather, she will not be able to take the calf out or around to find a buyer. She will continue to keep the cow since it’s a female cow and is especially good for breeding. Mrs. Toa tells us that she cannot afford to participate in another loan. However, Mrs. Toa informs us that there used to be a similar program like a savings groups from the local government but it stopped after some time because it was so hard for the Agent Orange families to save even the lowest amount. Ngoc tells me that this can be attributed to the fact that many of the Agent Orange Caregivers are elderly parents–in many cases mothers who cannot physically work other than around the land or household. Mrs. Toa also says that she is not interested because she knows that she will not be able to contribute. Mrs. Toa allows me to take some pictures of her and her grandchildren while we wait for them to bring the cow and calf back from the field.
As I take pictures of Nam, he is smiling at me and seems happy to have visitors. I speak to him and bow so he is aware that I am saying hello. Mrs. Toa shows me his legs where the fluid has begun to build in his knees due to him not being able to move from the bed. Before leaving I wave and he tilts his head as if to say goodbye back. The oldest granddaughter is with me and points at what she thinks I should take a picture of while around the house. I am able to see that both the cow and calf are doing well and eating before we leave. I felt slightly happy that we were able to help this family and that some things seem to be improving for Long. But I also hope that Mrs. Toa can eventually take Nam to the hospital to check on his legs.