The Manila CBR Seminar-Workshop
The Manila Seminar and Workshop for SLF mediators was especially challenging because there were so many persons taking part—by the last day, more than 100. This made a fully participatory approach difficult. But by dividing into small groups, virtually everyone was able to contribute.
One goal of the seminar was to help mediators realize the importance of full involvement and leadership by disabled persons in the programs and decisions that affect them—and especially in Community Based Rehabilitation initiatives.
Therefore the organizers made a point of inviting leaders from various organizations of disabled persons, as well as disabled staff from the programs of the mediators.
The first day was mostly spent by giving the mediators a chance to listen to and question these disabled persons about their priorities, needs, and wishes—as well as obstacles they faced in achieving full participation in society. They described the ways they were succeeding in surmounting certain obstacles, and gave ideas for how SLF mediators might assist in this process, especially with disabled children.
A discussion followed of the relative strengths and weaknesses of existing CBR programs and of the Independent Living Movement. The group agreed on the importance of combining the strengths of both approaches: the strong leadership and self-determination of Indepen-dent Living, together with the commitment to include all disabled persons, especially those who are poorest and least able to defend their interests, which is a strength of CBR.
The second day, the mediators met in small groups with disabled children and their parents. The purpose was to listen to the parents and children about what they considered to be their aspirations and concerns. Rather than focus on the biomedical needs of the children (which is what happens too often in conventional rehabilitation), they were encouraged to take a more holistic approach, exploring the full needs of the child, ranging from food and housing, to play and interaction with other children, to schooling, skills training, work, and full participation in society. Some parents wept as they described the difficulties they encountered. But at the close of the sessions, they expressed thanks for the opportunity to be listened to so attentively…and by a group of educated persons and professionals!
For the disabled children who could express themselves in words, the opportunity was unique. Some who were at first withdrawn and reticent to speak, when they discovered they were not only listened to but taken seriously by a group of adults, opened up and discussed their biggest fears and dreams.
This more comprehensive, or holistic, approach to the needs and possibilities of disabled children is consistent with the evolving priorities of Stichting Liliane Fonds, which places increasing emphasis on the social aspects of rehabilitation and integration. To this end, SLF is currently designing new report forms for planning and recording the progress of the children helped through mediators. Kees van den Broek, Director of SLF, led several brief sessions to discuss the purpose of the new (still experimental) report forms, and to gather useful feedback from the participants. The new forms are designed not only for reporting progress, but also for helping the mediator design a comprehensive approach to meeting the full range of the child’s needs.
Another important activity of the second day was to introduce the concept and practice of “Child-to-Child.” Through Child-to-Child, school-aged children learn thoughtful ways to respond to different health and development needs of their younger brothers and sisters, and of children with special needs. Participants watched color slides from PROJIMO in Mexico, where school children learn to appreciate disabled children for their strengths, not their weaknesses, and where children with different disabilities learn to help each other. (Examples were given from our new book Nothing About Us Without Us, which was made available to all the mediators.)
The third (last) day of the seminar involved a hands-on workshop in which the mediators, in 6 small groups, worked with a dozen disabled children and their parents, designing and building simple assistive equipment.
This learning-by-doing activity was held at House Without Stairs, a famous skills-training, income-generating program for disabled youth in Metro Manila.
In this remarkable program hundreds of persons, many disabled by spinal-cord injury or polio, produce assistive devices ranging from wheelchairs and hand-powered tricycles to walkers, standing frames, and orthopedic appliances. They make furniture, crafts, and educational toys. They also do piece-work on contract for different industries. Most of the heads of the shops are disabled, take pride in their work, and are good role models for newcomers.
The first step of the assistive-device workshop (which actually took place on the second day) was for each group of mediators to meet with the disabled child and his or her parents, to explore what the child (and/or parents) most wanted to accomplish (within realistic expectations) in the near future. Next, the group tried to design an aid that might help meet that expectation. Together the mediators, parents, and the child (when possible) drew a picture, on poster paper, of the device they hoped to make. Then, in a plenary session, the different groups gathered to present their various designs and to invite everyone to suggest improvements.
The next step was for each group of mediators, parents, and child (as much as was possible) to collectively build the device. For many mediators and parents this was a totally new experience. Many were unsure of their abilities and nervous about taking part. But, once they started, they discovered they were able to do far more than they had expected. As the process was demystified, their confidence grew. The husband of one mediator, a local carpenter, and a couple of parents who were skilled craftspersons, made important contributions.
For a one day apprenticeship workshop, the results were impressive. Equipment made comprised several special seats, including one adjustable cardboard seat made for Lorenza’s baby. Lorenza helped to design and build this seat and other equipment, and in the process learned important skills which she could subsequently put to good use in her village.
With the help of the disabled workers of House Without Stairs, designs were made for wheelchairs and a hand-powered tricycle, adapted to meet the needs of several disabled children attending the workshop. The House Without Stairs team committed themselves to building the wheelchairs and making sure that they meet the needs of the children who will use them.
Another piece of equipment included unusual parallel bars for an eight-year-old girl with spastic/athetoid cerebral palsy. On trials with the girl, the group found that when she stood, her arms lifted stiffly, against her will, to the level of her shoulders. Try as she might, she could not lower her arms to the normal height of parallel bars. The group experimented with different heights and widths of bars (first holding them by hand in different positions) until the girl found the position she felt comfortable with. Then they made a set of movable bars in the position preferred by the child. In the process this girl, who had at first been frightened and non-cooperative, gained self-confidence and participated to her best ability.
The final step of the workshop was a plenary evaluation. The different groups and children involved demonstrated the equipment they built, and everyone could make suggestions.
Perhaps the most impressive accomplishment of the workshop involved two boys, both with diplegic cerebral palsy, who had never been able to walk. The older boy, Roldan, who was 17 but looked about 13, had been told by doctors that he had polio. He had very spastic legs tightly bent at the knees. Since he had been told he would never be able to walk, his request was for a “racing wheelchair.”
On physical examination, however, the group found that Roldan had a powerful upper body and remarkably good balance and coordination. When the group explained, “We think there is a good possibility you could learn to walk with leg-braces and crutches,” Roldan gasped in disbelief. But when they asked him if he would like to experiment with standing and walking, he was thrilled and eager.
They started by making a walking frame, or “parapodium.” They cut an upright piece of plywood as high as Roldan’s chest, and attached this to an oval footboard, to which they attached a cardboard leg-separator extending from above his knees to his feet. They strapped Roldan to the parapodium while lying down, gradually straightening his stiff knees until they were almost straight. Then they stood Roldan up. He stood between two tables, tipped on their sides to simulate parallel bars. In a few minutes, Roldan learned to “swing through” on the bars, bearing his weight on his powerful arms. He was so happy he whooped. The group explained to him that if he strapped himself onto the frame and practiced walking every day, in time the contractures of his knees would stretch and he would be able to stand straighter. Then he could graduate to braces and crutches. “And pretty soon, with your strong arms and good balance, you will fly!” Roldan could scarcely believe it.
With the younger diplegic boy, Domingo, it was a similar story. But it was easier, since his knees straightened more readily. At first Domingo was reluctant to try a walking frame. But Roldan, thrilled by his own success, urged him on: “Look at me! If I can do it, so can you!”
In the final evaluation session, the 2 boys eagerly demonstrated how they could walk, proudly swinging through between the two tables. Had the group had time to find or build crutches, it was clear both boys could have graduated to crutch-use that same day.
Then came the biggest surprise. I (David) asked Domingo if he could stand with the frame, without holding onto the tables. Not fully understanding my English, the boy thought I was asking him to walk without using his hands. To everyone’s amazement he lifted his hands in the air and rocking his weight from one side of the oval base of the parapodium to the other, managed to teeter himself forward in step-like fashion. Everyone cheered.
At the end, the two boys, glowing with new-found pride and confidence, expressed their appreciation. They felt empowered by the group problem-solving process in which they had been included and listened to as equals.
Then in big-brotherly fashion, the older boy, Roldan, turned to Domingo. He encouraged the younger boy never to give up, to stay in school and study hard, so that one day he could get a good job, help others, and show the world that disabled people deserve equal respect.
This was truly the spirit of Child-to-Child at its best. The workshop came to a close, with everyone inspired by the discoveries and successes of the disabled children involved. They were also animated by their discovery of their own, previously unrecognized abilities and possibilities. They found that with modest resources and a few simple tools they could make a difference in children’s lives and abilities. They learned that this is easier, more empowering and more fun when mediators, parents, children, and members of the community work together as equals in the problem-solving process.
If they learned nothing more, the SLF seminar/workshop can be considered a success.
Story from the Philippines: Girls with Brittle-Bone Disease from Mindanao and Mexico Become Pen-Pals
In the southern island of Mindanao, in the district of Marbel, we visited a tribal area where the people are very poor but their village, constructed almost entirely of bamboo, has a traditional harmony with the landscape. There we visited the hut of a family who have three little girls with brittle-bone disease (osteogenesis imperfecta), a congenital condition in which the bones break very easily, and the limbs become twisted and deformed. This tends to make weight-bearing and walking increasingly difficult and finally impossible.
None of the 3 girls could now walk. Two were sitting and one lay on the elevated bamboo floor of the hut. Not used to strangers, the3 girls were at first frightened and shy. Gradually they warmed up. The oldest, Jenny, was the most spirited. Yet she had a sort of brooding anger, especially toward children outside the family, whom she said were mean. (During our visit, the windows and doorways were crowded with faces of curious village children, whom Jenny often snapped at and tried to shoo away, to little avail.) Fifteen years old but tiny for her age, Jenny had never been to school, but her mother and younger brother had taught her to read and write.
The next oldest girl, Rosalie, about 9 years old, was very shy and looked miserable. She lay on her back and moved very little. The girls' father, who was dressed in rags and had a kind face, said he was worried about Rosalie, who had been lying that way for 3 months. She never sat up because her back hurt so much when she tried. We concluded that Rosalie probably has a fracture of the spine.
This will likely mend in time. But she also had developed a chronic cough and looked ill. The biggest danger now was stasis pneumonia, which can develop from lying in one position for a long time without moving. (The father explained to us that a fourth daughter had already died from a similar condition.)
We suggested that Rosalie try to take deeper breaths. She tried. The local mediator made a note to bring Rosalie a toy flute, so that by playing it she would move more air in her lungs. But most important was to help Rosalie change her position regularly and begin to sit up. Because of the pain, this would have to be a gradual process. We tried gently slipping a board under her back, and slowly inclining her up. But we succeeded in raising her only a few degrees before she whimpered. A decision was made to build a small, padded, adjustable reclining couch for Rosalie, which could be gradually angled from a lying to a sitting position. (In fact, a few days later the couch was made by the local mediator and her group during the workshop in Davao.)
The isolation of the 3 girls from children in the village was a concern. The mother of another disabled girl volunteered to start a Child-to-Child project, helping the village children to understand the difficulties of the 3 sisters and to look for ways to include them in games they could safely play. The children sometimes play a board game called “Damas.” In the Davao workshop, a group of mediators made the board and chips for this game, so that the village children could use it to play with the sisters.
Seeing the 3 girls in this Filipino village reminded me of a girl with osteogenesis imperfecta in Mexico, who is also sponsored by Liliane. Virginia, too, is from a poor family, but through Project PROJIMO has had various forms of assistance from an early age. For years she was able to walk, but now uses a wheelchair. (At her request, the PROJIMO team adapted a removable table for her wheelchair at a recent SLF mediators workshop in Mexico).
Now 17 years old, Virginia is finishing secondary school, and is determined to study to be a secretary.
In order that the 3 sisters in Mindanao and Virginia in Mexico feel less isolated, share experiences, and become long-distance friends, we have arranged that the girls on either side of the Pacific become pen-pals, writing to each other (through interpreters) and exchanging drawings and photos. Especially for the Filipino sisters, who rarely have a chance to leave their hut, this interchange with a girl with a similar disability, in a different land and culture, should help to extend their horizons, lighten their hearts, and give them courage to make something of their lives, just as Virginia is doing. It should bring a bit of joy and adventure into all their lives.