Kelly Howell

Kelly Howell (Association for the Empowerment of Persons with Disabilities - AEPD): Originally from Grand Rapids, Michigan, Kelly received her B.A. in International Relations from Grand Valley State University in 2012. She went on to study in both Egypt and Ireland, where she developed a special interest in post-conflict community building. At the time of her fellowship Kelly was studying for a Masters Degree in Conflict and Dispute Resolution at the University of Oregon. After her fellowship she wrote: “AEPD’s work here is much needed and so important, and I am very happy to be working alongside such brilliant advocates for human rights.”



Families Affected by Agent Orange

16 Oct

In the blog prior to this one, I explain how the use of Agent Orange in Vietnam has led to a great many challenges for the Vietnamese. In this blog, I will introduce you to one of the families affected by its use.

Agent Orange is an herbicide that the U.S. sprayed over rural areas in Vietnam from 1961 to 1971 to defoliate trees and shrubs as well as kill food crops that were providing cover and food to opposition forces. Agent Orange contains a toxic contaminant, dioxin, that created many health problems at the time it was sprayed, and is still causing health problems in Vietnam today (aspen.institute.com).

Unlike in the US where there are specialized Roundup cancer lawsuit centers which help roundup affected victims to get the justice they deserve. In Vietnam, the scale of effects that Agent Orange has had has made it impossible to get justice to something which happened long ago. Agent Orange has been linked to many different health problems, including birth defects in children, cancers, neuropathic disorders, acute and sub-acute neuropathy, AL Amyloidosus, Acneform diseases, chronic B-cell Leukemias, Diabetes, Hodgkins disease, Ischemic heart disease, multiple myeloma, non-hodkins lymphoma, Parkinson’s disease, prostate cancer, respiratory cancers, soft tissue sarcoma, spina bifida, Achondroplasia (dwarfism), cleft palate, clubfoot, esophageal and intestinal artesia, Hallerman-Streiff syndrome (little growth), Hirschprung’s disease, William’s syndrome, and a host of other diseases (veteranshealth.org).

While in QuangBinh province in Dong Hoi, Vietnam, I met with several families who were affected by Agent Orange. Only in the last decade have people in the rural areas of Vietnam begun to hear about AO. Until then, they had no idea what was happening in some of the families there. Their stories were heart-rending yet hopeful, and I’d like you to meet some of the families that I met. I’ll begin with the family of Le Thanh Duc.

Le Thanh, on right, with an AEPD Outreach Worker

Le Thanh Duc joined the military in 1975, and a few years after the army promoted him to the Hieng Community in Da Nang. He told me that when he came there, the forest was already burned by what he later came to know as Agent Orange.  He stayed in or near Da Nang for over four years.

After patrolling near the Da Nang Airport, he and some of his party were asked to remove a leaking canister from the grounds. He later realized that canister was Agent Orange that had been stored at the airport. In the days following he experienced a range of symptoms, including dizziness and headaches. These later faded but, he continued to work at Da Nang Airport, now known to be an AO hotspot (googlemaps.com), for over a year. He was then promoted to the Hieng Community in Da Nang, and was there for over three years. Le Thanh suffered from intermittent fevers and ailments upon his return from the war, and was formally diagnosed by a government doctor as “suffering from Agent Orange side effects.”

Although there are no known disabilities resulting from birth defects in his or his wife’s family, his first three children were born with an unknown ailment, while the last three were born healthy. The first child was born in 1983, a girl, Le Thi Phuong. When she was born she appeared healthy. However, around age 10, she began to develop what appears to be a Neuropathic disorder that leads to paralysis.

Originally able to speak, walk, and run, she began to experience difficulty with her speech and motor skills. Although her family brought her to the hospital to be examined, no formal diagnosis was ever made, the only diagnosis was “suffering from Agent Orange side effects.”

Le Thi’s health has continued to degenerate until today, and now her paralysis has progressed to the point where she cannot sit up or talk. She is always prostrate, and depends on her parents to feed her and change her, as she has lost control of her bodily functions. Her muscles have degraded and she has very little muscle mass. Her back is sharply arched, something that has happened gradually, and her hands have become bent. Her family does not know if her mind has been affected, because she cannot speak or communicate, other than with the occasional smile, and sometimes she cries out. When she does this, her parents move her to a new position, on her stomach or her side, which they say is what she wants.

Le Thi No and Le Thi Lanh

The next two children to be born, both daughters, Le Thi No (b. 1986) and Le Thi Lanh (b. 1988), have suffered in the same way. They too were born without any apparent disorders, but as they grew, by age 10, the same strange symptoms appeared. Their parents say the disease only progresses, and there is no cure. The next three children to be born grew up without medical problems.

All three affected children respond to the sounds of their parents voices with smiles and vocalizations. According to Le Than Duc, his youngest daughter Le Thi Lanh, the one most recently affected, can text very simple messages on a cell phone, even though she cannot speak. This may be evidence that the children still have some normal cognitive function that is masked by the paralysis of this undiagnosed diseaase.

Le Thanh Duc is convinced that it was his exposure to AO in Da Nang that led to he and his children’s medical problems. However, he bears no ill will, preferring instead to leave the past alone and look forward to a better future, one that will allow him to better care for his family financially. It takes all of the parents’ time to care for their sick children, and AEPD has been speaking with them about a micro-loan that would help them start a small home-business producing fish sauce. This business could be run from the home, allowing the parents to continue to care for their children, while still earning some money to run the household.

However, this will not be enough. Le Thanh and his wife do not possess the medical skills that are necessary to fully care for their children. The family lacks the transportation as well as the funds to ensure that the children are seen regularly by a medical doctor, and if complications arise, the family cannot afford the expert medical care that will be required. Le Thanh’s family is in need of expert advice, medical supplies, and access to medical care.

Additionally, the Duc family is not connected with the parents of other children in their community that are suffering as their own do, and have little social support,. According to the outreach worker I was led by, many families with similarly ill children exist in this town and others; enough to start a community support group. The problem is, social stigma arising from having a family member with disabilities is a big problem in Vietnam, especially in the rural communities. It is especially problematic with disabilities like the ones that Le Thanh’s children have, as this disease can appear to the untrained eye to result from an illness that could be contagious.

As a result, if neighbors and others in the community find out that the Duc family’s children are ill with this wasting disease , they would keep them away from the home and stay away themselves. This leads to a kind of “polite ostracization” within the community. Families like Le Thanh’s tend to keep their children’s conditions as quiet as possible, to ensure that they and their healthy children can remain integrated within their communities.

In Vietnam today, there are many families like Le Thanh’s. Much more research is required regarding AO and its effects on the ground in Vietnam. The families that suffer from undiagnosed diseases, such as Le Thanh’s, need access to medical care and general support.

The governments of the United States and Vietnam have each taken many steps toward improving the lives of those who have suffered due to the use of AO in Vietnam, but there are still many families that need help. AEPD is currently researching a new program that is geared specifically toward aiding victims of AO, a necessary and welcome addition to the endeavor to improve the lives of people with disabilities in Vietnam.

Posted By Kelly Howell

Posted Oct 16th, 2013

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