The Story of
No Ordinary Journey Foundation
When my husband and I travelled with our children Devin and Kasenya (then 15 and 13 respectively) for four months to SE Asia, we knew the trip would change our lives but we didn’t know how. Even though we have a child with disability, we were extremely naive about the lives and conditions of children living with disabilities in this part of the world. We were in for a profound learning experience and the impact of our encounters would be deep.
Before we left our home in Canada we sought out opportunities to become involved or connected with the communities that we visited. By chance, we discovered Dr. Kate Armstrong and CLAN, who arranged for us to meet with doctors in the Diabetes Departments at the Children’s Hospitals in both Hanoi and Ho Chi Minh City (HCMC). CLAN was already working with them.
Since Kasenya is diabetic, we were anxious to learn more about the condition of kids with diabetes in Vietnam. But this connection would also open another door. Besides Type 1 diabetes, Kasenya also has cerebral palsy (CP) and uses a wheelchair. When the rehabilitation department at the hospital in HCMC got news of our visit they invited us to meet with parents of children with cerebral palsy.
When we entered the room where the parents were waiting, I noticed that many of them were dabbing their eyes. I hugged or shook hands with each as seemed appropriate in the moment but our connection would go much deeper.
Through our interpreter we learned that many of our challenges in managing our child’s condition are the same. Many of our concerns for our children were the same. The significant difference was in the access that our family has to equipment, medication and therapy. In fact we were careful to talk only about the things that might be within the reach of the Vietnamese parents. We didn’t tell them that Kasenya not only had the travel wheelchair that she was using but two more, including an electric one, at home.
Through out the morning it continued to puzzle me why the parents had cried when they met us. At the end our interpreter explained that in Vietnam there is still a stigma attached to having a child with a disability. Our family was unashamed and we went with the expectation that Kasenya had the right to fully participate in everything we did. The interpreter told us that we not only brought these families education but we also brought them dignity.
We were grateful to meet with parents of children with disabilities because these opportunities were rare on this trip which also took us to China, Laos and Cambodia. Language was a barrier but we simply didn’t see a lot of children in wheelchairs. Later in the trip we would understand the profound impact that a wheelchair can have.
We stayed a week in a very small village in the Mekong Delta where we taught English. Both of our children loved this experience, especially the opportunity to be with other children.
A group of girls from the elementary school discovered us and would come every day to see Kasenya at the house where we were staying. They jostled each other for a turn to push Kasenya in her wheelchair and clustered around her to look at the pictures in our Canada book.
The day before we left the village, I was walking through the market after it had closed and saw a woman sitting with her child in her lap. I guessed that the boy was about 10. He was disabled and there were recognizable signs that he had cerebral palsy.
I was shocked as I thought back to all the times we had been in the market that week and the boy had been inside his house only a few meters away. Because he had no wheelchair, he lived a life of social isolation. I had dreaded the arrival of Kasenya’s first real wheelchair because a wheelchair is a symbol of disability. But now I understood that a wheelchair is also a symbol of mobility and freedom. I vowed that I would give that gift to this boy.
Later when I tried to explain to some of the teenagers in our English class that this boy was like Kasenya, they looked at me incredulously. How could this boy with his little emaciated body have anything in common with our healthy and robust child? I understood their skepticism but what about the boys’ mother? I had seen her in the market several times that week. What had prevented her from approaching me? Why had she not wanted ME to know about her son? Maybe not all the barriers were physical.
When we returned to Canada, I found a suitable used wheelchair that someone had to give away. Finding a wheelchair for a child with cerebral palsy is a complicated issue because it can’t just be any wheelchair. It has to have appropriate seating and supports such as a headrest. I was extremely lucky to find one that would work. I dreamed of the message the wheelchair would give to the mother and to the whole community about the boy.
I would be going to Cambodia shortly and I planned a side trip to Vietnam to again meet with parents in the Rehabilitation Department at the hospital in HCMC as well as deliver the wheelchair the village. Before I did, I had our friend call the village and let the family know. Our friend called back with the sad news that the boy had died shortly after our visit.
Although we would never have the opportunity to help this boy, there are many other children with disabilities in the developing world that we can help. We have seen with our own eyes the acute need: parents carrying their disabled children on their backs because they don’t wheelchairs; children with disabilities living at orphanages because their parents can not support them at home; the need for medications, educational materials, therapies and equipment.
That is why we started . . .
No Ordinary Journey Foundation