A Regional Training Course in Community Based Rehabilitation Quito, Ecuador, September 18-24, 2000
This course was organized by Christoffel Blindenmission (CBM) for participants in programs assisted by CBM in 14 Latin American countries. The course was skillfully coordinated by Karen Heinicke-Motsch of CBM Ecuador. Facilitators included Dr. Molly Thornburn who for 3 decades has done outstanding work in community health and child development in Jamaica. David Werner was also a guest facilitator.
The course focused strongly on management, organization, and evaluation. It also included hands on, learning-by-doing activities, in the areas of Appropriate Technology and Child-to-Child.
Although each program had been asked that at least half the participants sent to the course be disabled, in fact only 2 of 50 participants had notable disabilities.
Therefore one of the main objectives of the course was to help participants learn how important it is to include disabled persons and their families in CBR initiatives.
To emphasize the importance of listening to and including disabled persons in every aspect of CBR, a number of activities were planned, including allowing local disabled persons to express their concerns and recommendations.
Here we will focus on the activities involving the Appropriate Technology workshop (coordinated by David Werner). First the course participants visited disabled children in their homes, observed the limitations, possibilities, and resources in the home environment, and discussed with the children and their families their needs and wishes. They explored what the child and family felt might be helpful in terms of assistive equipment or devices. Together they made a provisional design (or cardboard model) of the equipment and later presented their ideas and designs in a plenary session for more input.
The next day the course participants made assistive devices together with the children and their relatives. They did this in a local wheelchair-making workshop run by The Paraplegics Association of Pichincha. This was a valuable experience for the course participants, since the disabled workers had far more technical skills (such as welding) and experience than the participants. Results were impressive.
Here we present briefly the process of working with families to create the assistive devices.
Alex is a seven year old who lives with his single mother and siblings in a borrowed house on a steep hillside near Quito. His family is quite poor.
Alex has arthrogryposis (stiff joints) affecting both legs. His knees don’t bend (except to the side) and his feet double inward (varus contractures).
The boy loves to run about on all fours. On the steep slopes he is agile as a mountain goat. He also has crutches for going to school. They keep his hands cleaner and protected, but he doesn’t like them because with crutches his knees hurt more and he feels less secure on the steep paths.
The course participants saw that Alex’s crutches were too small. They made him bend over while walking, which contributed to his mild hip-flexion contractures. Also the hand grips were much too high, making it harder to bear his weight on his hands, so he was bearing too much weight in his armpits.
A debate arose about what would be best for Alex. A therapist thought Alex should only use crutches, because it is “more normal” to walk upright and because properly adjusted crutches (standing straighter) might help correct his hip contractures. Others, listening to the child, agreed that it was safer on all fours. So they made for him some simple “hand boots” to protect his hands and keep them cleaner in muddy weather.
They also made Alex new crutches. Although he still preferred walking on all fours and loved his “hand boots,” he also found walking easier and less painful on his new crutches, which let him stand straighter and bear more weight on his hands (less on his feet). Alex and his mother were happy with the devices, and with taking part in creating them.
Emerson is an intelligent young man, now 20 years old, who has a form of progressive muscular atrophy. He lost the ability to walk when he was 4 years old. He has a dislocated right hip and severe contractures of his fingers and one wrist, and severe scoliosis. When the course participants talked with Emerson in his home, they first suggested a wheelchair. But the youth refused, insisting that he wanted to walk. Unrealistic as this seemed, the group designed a walker for him.
In a plenary session (below) they demonstrate how the walker is designed to support his forearms and chest, so that only part of his weight will be on his deformed feet.
Mauricio, head of the Paraplegics Association of Pichincha, helped with building the walker (modifying one his team had already built) and then he welded 2 wheels on the back and 2 castor wheels on the front. Through trial and error and a lot of suggestions from Emerson himself, the arm-rests and chest support were adjusted to suit him.
When Emerson first tried the walker, he was unstable and his dislocated hip hurt. An elastic hip-band seemed to help, and he took a few steps. He was thrilled! It was the first time he had walked in 16 years! With practice he improved, and to everyone’s amazement, at the day’s end he walked proudly to the bus.
Emerson likes to read but has trouble holding a book. So while one group was adapting his walker, other participants made a laminated cardboard stand to hold a book while Emerson lies down (which he has to do often to reduce back pain.) Yet another group made a simple night splint (a padded piece of wood) to help gradually straighten Emerson’s contracted wrist and fingers.
Both Emerson and his mother (who helped make some of the equipment) were delighted with the results of the workshop. Emerson’s spirit was lifted greatly by realizing that so many people cared about him and responded to his felt needs.
Javier is 18 years old and has spastic cerebral palsy that greatly limits his movement and speech. When a small group from the course visited his home, at first his family was quite scepitcal. His mother explained that time and again charitable programs had come, given advice without listening, taken photos and made promises for assistance, but without results. The family was fed up.
In a corner of the house, gathering dust, was a donated wheelchair. For Javier it was useless. It was so wide he fell sideways in it. The arm-rests were way too high. The foot-rests projected far forward, out of reach of his contracted legs. His pulled-back feet bumped into the front caster wheels.
At the workshop the group modified Javier’s wheelchair to meet his needs. To make it narrower they reduced the width of the vinyl seat and back. This closed the X-brace somewhat (which also raised the seat, in effect lowering the arm-rests.) They cut and rewelded the foot-rests between rather than in front of the castors. And they added a seat belt to keep his butt from slipping forward.
Javier and his family were so delighted, they joined the course the next day, to help others learn from such interactive problem-solving.
Overall, the workshop was a great success. Altogether the course participants designed and made 14 devices for 7 children.
Most importantly, they learned how to work together with disabled persons and their families as partners and as equals.