Resources: Toward the Tibetan Plateau

By Delia “Dee Dee” Freney, OTR, ATS

Mu Pa Chu looks on as David Altman, RTS, prepares to attach his seatbelt and Ilse Verweirder, OT, holds the umbrella on their first roadside fitting.

Resources: Toward the Tibetan Plateau
Wheels for Humanity sets out on another mission for mobility by providing people with disabilities in China and Tibet with wheelchairs and seating systems.

As our small bus weaves in and out through traffic on the busy streets, we are anxious and excited to meet our fellow Wheels for Humanity team members at the Holy Love School in Chengdu, the Sichuan capital in China. Our international group of two occupational therapists (one from Holland), two physical therapists, and a rehabilitation technology specialist, journalists, interpreters, and Kham-Aid Foundation staff members were gathering to plan our 2-week adven-ture on the Tibetan plateau.

Wheels for Humanity is a nonprofit organization based in North Hollywood, Calif, that works with community leaders in the villages and towns of developing countries to identify disabled individuals in need. David Richard, executive director, had contacted me about joining a team of professionals to distribute and fit donated wheelchairs to China and Tibet.

Wheels worked in tandem with the Kham Aid Foundation, a nonprofit corporation with a mission to bring international assistance to the people of eastern Tibet. Kham Aid's Chinese office, along with help from the government, was able to identify villagers in need of our special wheelchairs.

We gave in-services to teachers, physicians, health care workers, and government officials on the basics of measuring patients for wheelchairs and guidelines for safe transfers and operation of a wheelchair.

Access to AT
Our primary goal, however, was to fit and distribute donated wheelchairs with seat inserts and cushions to Chinese and Tibetan people who have little or no access to affordable medical care. Assistive technology is almost nonexistent in the inner regions as we traveled west to Kangding, Yajiang, and Litang. Families carried their disabled family members, young and old, on their backs to town and through the villages. Others dragged themselves on dirt roads.

It was on a dirt road to Yajiang that we pulled up to meet our first patient, Mu Pa Chu. He was a 36-year-old man with cerebral palsy from birth who had spastic quadriplegia. He had multiple deformities including bilateral hip dislocation, flexion contractures of his knees, and a kyphoscoliosis. His family had made him a small cart with wheels. He sat with his feet tucked under him barely able to propel himself. He had large calluses on both feet from sitting in this position. His mother pulled him with a long rope attached to the front of his cart.

A Ba gives his thumbs up sign of approval to his new seating system as Sally Lovell, PT, shows him the benefits of the honeycomb cushion.

We selected a lightweight wheelchair with a seat insert that had lateral trunk supports, lateral hip guides, flip-up armrests, and flip-down abductor. His hip adduction was so severe that the abductor had to be removed as he could not tolerate its dimensions. Instead, we used some foam to make a smaller abductor to place between his legs. We explained to his family how the pad between his legs would keep his knees from rubbing and prevent skin breakdown. Otherwise, his skin was found to be intact at all the points of concern by the team's examination.

On our return trip, we visited Mu Pa Chu in his typical Tibetan home and the family managed to get both him and the chair in and out of the house. This is a two-step process and the almost vertical stairs in their house left the whole team wondering how they even managed to get Chu up and down all these years.

We observed that the terrain must have been too much for the antitips as one was totally sheared off. We removed both antitips in the belief that the balance was safe and he would not be at risk without them. This roadside evaluation and fitting was really a unique experience. Our presence was a wonder to the community, and as we stopped to do this roadside evaluation, we had many curious onlookers.

We arrived in the town of Litang (13,300 feet above sea level), one of the highest towns in the world. The population is 95% Tibetan. Hu Gua Hao is a delightful 7-year-old Tibetan boy with athetoid-type cerebral palsy. He had never been to school and crawling was his means of mobility.

Gua Hao has been disabled since birth and his father carried him in to see us. He was able to ambulate with the support of his father's hands. We thought that a push walker would be great if we had one with us but we did not. However, he was able to do limited walking by pushing his new lightweight wheelchair. We fitted him with an insert that had lateral trunk supports, a seat belt, and flip-up swing-away footrests that he quickly learned to operate. Gua Hao figured out how to independently transfer in and out of the wheelchair by himself. He only needed to be reminded to put the wheel locks on. Once in the chair, he was off wheeling himself about like any active 7-year-old. He learned quickly to maneuver and then propelled himself away from the group; he did not want to sit listening to us give instructions.

Treating Postpolio Condition

When we returned to Chengdu, we had the biggest seating challenge in store for us. We were taken to a family who had two girls stricken with polio when they were infants. Win Ying Cao and Win Jun Cao are 38 and 36. Today they are bright and friendly young women who primarily stay at home with their elderly parents.

Win Ying was more progressed with her postpolio condition. She stayed in bed most of the day with her mother diligently repositioning her. She had such poor head control that in sitting she had to use her left arm to support her head by propping her chin. She had a severe rotoscoliosis and it was very difficult to even ascertain how this affected her respiration. Her sentences were brief and labored. However, she managed a wonderful broad smile when we talked to her. Although the PT wanted to give her a soft trunk support, we could not follow up on its fit so we did our best to fit her in a chair. The tilt-in-space with the seat insert we tried was too much change of position for her difficult-to-balance head and trunk. The back insert did not allow for her back deformities. We selected a recliner and the sling back accommodated her deformities. We cut out a cardboard tray as a template for the family to fabricate a wooden tray. This would give Win Ying a better surface as a frontal forearm support and an alternate position to just propping on the armrest.

The younger sister, Win Jun, was able to sit most of the day in a small chair made by a friend of the family. Little wheels provided mobility around the house, but Win Jun's scoliosis and heavy leaning on her right armrest were causing skin breakdown. We suggested the family pad the chair with a towel or foam until we came back the next day with a lightweight wheelchair and seat insert. Due to her severe scoliosis and trunk asymmetry, we lowered the left trunk support slightly to accommodate her leaning. She would benefit from a cut-out table so she could continue providing an informational phone service to the disabled community. I thought she would be a good candidate for a computer.

The family lives on the fourth floor. Elevators are unknown in the towns and villages we visited in China. The family carries each of the girls using a two-person lift method. My concern was that we burdened them with heavy wheelchairs to lift up and down those flights of stairs. However, the mother was so grateful that I felt the family would figure out what works best for them.

On this second annual trip to China and Tibet, 26 complex wheelchairs and inserts were distributed and fitted. Hopefully, the local professional people we trained will be able to do follow-up with their patients. Next year's trip will be an opportunity to do more distribution and a follow-up as well.

Wheels for Humanity continuously travels to all parts of the world throughout the year providing its services. Some of the destinations include Costa Rica, Mongolia, Africa, Nicaragua, Ukraine, Vietnam, China, and Tibet.

Delia "Dee Dee" Freney, OTR, ATS, is an independent consultant and educational speaker in Northern California. An occupational therapist since 1978, she has a special interest in assistive technology.