David Werner

In January, 1995, PROJIMO (Program of Rehabilitation Organized by Disabled Youth of Western Mexico) hosted a four-day workshop to discuss th organization and problems of small community-based programs. Participants came from 13 different programs in Mexico and one in Nicaragua. One afternoon the lively workshop, held under a giant laurel tree, was interrupted by one of the disabled children staying at PROJIMO. Jesus rolled up to the study group in his wheelchair asking for Conchita, one of PROJIMO’s coordinators who was participating in the workshop. The boy was obviously distraught.

“This is the last day I’m going to school!” declared Jesus.

“Why?” Asked Conchita, rolling over to him in her own wheelchair.

“Because the teacher is mean to me,” said Jesus. “When I ask her what is written on the blackboard, she gets angry and says I’m disturbing the class.”

“Doesn’t your teacher know you can’t see?” asked one of the workshop participants, herself blind.

“I’ve told her, but it’s like she doesn’t hear me. Or doesn’t believe me,” said Jesus. “She treats me as if it were my fault I can’t see well!”

Jesus, who is 13 years old, is multiply disabled. His life has not been easy. He was born with spina bifida, a defect of the spinal cord which causes partial paralysis and reduced feeling in the lower extremities. With a lot of help from his parents, at age three Jesus did learn to walk, although awkwardly. Then, at age six, he fell, hit his head, and developed meningitis. This left him nearly blind and with muscle stiffness (spasticity) that reduced control of his movements, including in his arms and hands. The stiffness gradually diminished, and with great effort the boy finally learned to walk again, using crutches and dragging his feet. But lacking feeling in his feet, he developed a deep sore on his foot. This led to a chronic, spreading bone infection which resulted, at age seven, in amputation of his right leg above the knee. Jesus went back to crawling and gradually developed flexion contractures of his hips and knee. And from spending long periods of time sitting on his insensate buttocks, he developed large chronic pressure sores, down to the bone. His lack of urine and bowel control (also caused by the spina bifida) made the sores difficult to keep clean, and the condition gradually worsened, year after year.

At age 13 his mother brought Jesus from Mazatlan, where the family lives, to PROJIMO (in the foothills of the Sierra Madre, about 100 miles away). On examining Jesus, the PROJIMO team thought that he could learn to walk again if he were fitted with a prosthetic limb. But first his hip and knee contractures needed to be corrected. This would require weeks or possibly months of gradual stretching on a wheeled gurney. Lying face down on the gurney would also take the pressure off his backside, and allow the large pressure sores to gradually heal. So arrangements were made for Jesus to stay at PROJIMO for an extended period.

Jesus’ stay in Ajoya provided for his first opportunity to attend school. Although he was frightened at the idea of being away from home, the challenge of going to school excited him. His mother and older sister had already taught him to read the letters of the alphabet. He could read them if they were drawn very large and he held them two or three inches from his face. So Jesus was eager to go to school and improve his reading skills. He started with enthusiasm, attending at first on his wheeled gurney.

Jesus is obviously very bright, and has an inquisitive mind. In spite of his visual impairment he learned so quickly that within the first few weeks he was advanced to the second grade. Unfortunately, however, the second grade teacher had little understanding of his special needs and regarded the disabled boy more as nuisance than a challenge. Unable to read either the blackboard or his books, Jesus little by little grew discouraged. “It’s no use,” complained Jesus. “I’m going to drop out of school. I want to go home.” When, in front of the workshop participants, Jesus announced to Conchita that he was going to drop out of school, the whole group began to discuss what they might do to help the child gain the will and courage to continue. Three of the workshop participants were from a program for visually impaired persons in the state capital, and one of them herself was partially blind. They suggested a number of ideas for helping Jesus learn more easily, and offered to talk with his teacher.

Then Ramona, the participant from Nicaragua, had an excellent idea. “Why don’t we try a Child-to-Child activity with the second grade children, to help both his classmates and the teacher understand Jesus’ visual problem better and figure out ways to assist him with his studies?”

Child-to-Child is an international initiative whereby school-aged children, through discovery-based activities, learn ways to help protect the health of other children or otherwise assist them, especially those who are younger, sick, or have special needs. Many of the early Child-to-Child activities and ideas were developed in Project Piaxtla, the villager-run primary health care program that gave birth to PROJIMO. One of the local villagers, Martin Reyes, who for over two decades worked as a health and rehabilitation worker with Projects Piaxtla and PROJIMO, now works with CISAS in Nicaragua, promoting Child-to-Child throughout much of Latin America. Four years ago he and David Werner helped conduct a Child-to-Child training program in Managua in which Ramona, the curren workshop participant from Nicaragua, had taken part. A year later (in 1991) Ramona, who has one leg paralyzed by polio, went to Mexico to apprentice in community based rehabilitation skills at PROJIMO. On returning to Nicaragua, she launched a program for disabled persons in her home town in Nicaragua. And as a part of her rehabilitation work, Ramona has actively involved school-aged and disabled children in a variety of Child-to-Child activities.

Most of the workshop participants had been unfamiliar with the concept of Child- to-Child, but on hearing Ramona speak of it, they wanted to learn more. Those working with blind persons were especially eager to take part in a Child-to-Child activity with Jesus’ class. The PROJIMO coordinators obtained permission from the school Director and second grade teacher to conduct the activity the next afternoon.

The Child-to-Child Activity

Ramona led the Child-to-Child activity, and her sprite, enthusiastic manner at once captured the children’s attention. She started by explaining a bit about Child-to-Child, introduced the visitors, and then told the children she wanted to explore with them what it was like to be blind, or partially blind, like Jesus. When she said this, all the children looked at Jesus, who sat in his wheelchair at the side of the classroom. Sensing their attention, he sat up importantly and smiled back at them.

Ramona called for volunteers to take part in a role play. Two children played the role of blind pupils. Two others took turns playing the role of a visually impaired pupil like Jesus. And two others played the role of school teacher. The two “blind” children had bandanas tied tightly over their eyes, and could see nothing. They tried to find their way around the classroom and follow instructions of the “teacher.” These children bumped into things and got confused. They said it was like trying to find their way in a dark room at night.

The other children helped by giving themclues or by guiding them. They also played a trick on one of the “blind” boys. The “teacher” asked the boy to find a girl named Eliza and bring her to the front of the class. Feeling his way, the blindfolded boy made his way to Eliza’s seat. But as he approached, Eliza quickly swapped seats with the girl next to her. The blindfolded boy took the other girl by the hand, led her forward, and presented her to the teacher. “Here is Eliza,” he said. “Are you sure that is Eliza?” asked the child playing the teacher. “Yes!” said the boy. “Take off your blindfold and have a look,” said the “teacher.” The boy took it off and stared dumbfounded at the girl he thought had been Eliza. “They tricked me!” he exclaimed. The entire class burst into laughter.

With another child playing teacher, the next role play involved a visually disabled child. To simulate the visual disability, the child had a cotton shirt draped over his head. (The facilitators had experimented with different cloths until they found one which limited vision similar to Jesus’ impairment.) The “teacher” asked the child to read from her book, and the child, holding the book a couple of inches from his face, could read only the largest letters. Then the “teacher” wrote words on the blackboard, and asked the “visually impaired” child to read them. The child had to go all the way up to the blackboard to read the word. By making the letters much bigger and darker, the class learned that the child could read the word from a little farther away. But she still needed to be very close to the blackboard.

After this role play with simulated visual impairment, another “pretend teacher” asked Jesus to read a word on the blackboard. Jesus rolled forward, and to read the word had to grip the armrests of his wheelchair and lift himself upright so that his face was almost touching the word, which he read proudly.

After seeing the difficulty Jesus had, both from the blackboard and from his schoolbooks, Ramona asked the school children, “Can you think of ways that you, Jesus’s classmates, can help him understand his lessons and get the most out of school, in spite of his disability?” The children came up with a wide variety of creative suggestions. These included:

  • Make sure Jesus sits at the front of the class, near the blackboard.

  • Write and draw very large on the blackboard.

  • Our teacher or one of us should alwaysread out loud what is written on the blackboard.

  • Have Jesus sit next to a classmate who can whisper into his ear what is written on the blackboard.

  • One of us could copy into Jesus’ notebook what is written on the blackboard.

  • And we should write in his notebook in big, dark, clear letters.

  • Maybe Jesus could use an extra big notebook and a black marking pen, so he can read for himself what he writes.

  • Would it help if Jesus had a magnifying glass?

  • We children could take turns after school, helping Jesus with his homwork and reading to him from his books.

  • Some of us can also take turns helping to bring him to and from school. (Although Jesus has learned to find his way without trouble, there is a steep slope on the way to school, and Jesus appreciates the assistance and comradery.)

With a little prompting, the children came up with yet other ideas:

  • What about a tape recorder? We could record the lessons from his books, and that way he could study them whenever he wants.

  • When we are given tests and exams, couldn’t Jesus whisper the answers in the teacher’s ear? (In other words, take them orally.)

After this discussion, Ramona asked the visually impaired visitor if she had any further ideas. She suggested that in order to make writing easier for Jesus (and the results more legible for the teacher) that Jesus be given special paper with extra dark lines— since for a visually impaired person the very thin pale lines on ordinary lined paper can not be seen at all. If paper with dark, widely separated lines could not be obtained, she suggested, the children could create such paper for Jesus with their rulers and a marking pen.

Then the blind visitor made another suggestion that at first totally confused the second graders. She told them that, with a little help, Jesus could learn to read with his fingers. From her folder she pulled a large sheet of braille script, and showed the children how she could read it with her finger tips. She let every child in the class feel the tiny bumps on the paper. And then she let Jesus try it, guiding his finger over the paper. After that she gave Jesus a sheet with the Braille alphabet. Next to each Braille letter a large, dark letter was written, so that Jesus could begin to learn Braille. The children were enthralled and Jesus was so excited he trembled. The visitor explained that the Braille system had been invented many years ago by a blind schoolboy in France. Judging from the response of the school children, this Child-to-Child activity was a great success. Jesus decided to stay in school, the teacher agreed to have Jesus sit next to a mischievous little boy who had come up with many of the suggestions of how to help Jesus with his learning. A small group of Jesus’ classmates began accompanying him to and from school. Some of the children help him with his homework. And now Jesus has both a magnifying glass and a small tape recorder, and one of the girls at PROJIMO, who also has spina bifida and an amputated leg and now walks with a prothesis, has offered to help tape his lessons.

Clearly, not all the problems are solved. The other children, rather than helping Jesus to do his homework, at first tended to do it for him. But the whole Child-to-Child process has been a rewarding learning experience for everyone. Both Jesus and his classmates are learning far more than just their lessons. They are learning the joy that comes from bridging barriers to understanding, from creative problem-solving, and from helping one another.

Jesus will probably finish the school year in Ajoya, where he is learning a degree of self-confidence and independence. His mother is now convinced that he can attend a local school in Mazatlan next school year. The PROJIMO team will try to make arrangements for Jesus to join Los Pargos, an organization of disabled children and their parents in Mazatlan. At Los Pargos Jesus will have the opportunity to study Braille under the tutelage of a young man with muscular dystrophy, named Sosimo. Sosimo, now in his twenties and severely disabled, has been active in Los Pargos since he was a young child and has since become one of the program’s leaders. He studied Braille in order to be able to teach it to visually impaired young people. Jesus could not have a better teacher— nor a better role model.