A Hands-on Learning Event in Brazil for Multipliers of Community-Based Rehabilitation
Striking Contrasts in Brazil
Brazil is a vast country which does not tolerate—but celebrates—DIFFERENCE. With its warmly human yet seductively candid vitality, the country is less a melting pot than a motley collage of races and cultures. A diversity of tropical, temperate, and ‘cool’ personalities-black, indigenous, caucasian-convive with daunting variations of harmony and discord while passionately preserving ethnic roots and rites.
Brazil has striking contrasts and contradictions. Its history is shrouded by colonial exploitation, the slave trade, brutal military dictatorships, and currently, by a voracious market economy that is further widening the immense gap between rich and poor. Today Brazil is one of the most inequitable countries on the planet: its wealthiest 10% have earnings 32 times that of the poorest 20%; festering favelas surround the heavily fortressed, prison-like palaces of the rich; the diseases of over-consumption divert public attention from the over whelming diseases of poverty.
Because of these enormous injustices, Brazil has been the spawning ground for a spectrum of idealistic social movements and democratic struggles. Through its comunidades de base (communities of poor families based on Biblical caring and sharing), Brazil pioneered the Theology of Liberation. While in Recife I had the privilege to meet 85-year-old former-Bishop Helder Camara, the beloved “pastor of the poor.” Long one of my heroes, I still have a quote by Camara pinned over my desk in California. It reads:
“When I give food to the poor they call me a saint. When I ask why the poor have no food, they call me a communist.”
Brazil is also the birthplace of the renowned educator, Paulo Freire. During the military dictatorship, he launched an adult literacy program which through a group process he called conscientizaçao, so effectively raised the awareness of destitute citizens that Freire was jailed and then exiled. (He is now once again a national celebrity.)
Freire’s methodology of ‘education for liberation’—described in his classic book Pedagogy of the Oppressed—has been adapted for health promotion throughout Latin America and the world to help communities analyze and organize to correct the root causes of poverty and poor health. In the village health program in Mexico we have made good use of Freire’s methods. Our guidebook Helping Health Workers Learn devotes a chapter to Freire’s empowering methodology.
Today Brazil no longer has a military dictatorship; its leaders are elected. But still the government is full of contradictions. While it promotes certain policies to soften the hardships of the disadvantaged, it caters mostly to the interests of the wealthy and powerful, often at devastating human andenvironmental cost.
Fighting for Disability Rights in Brazil: From the Bottom Up and the Top Down
To a large extent, improvements in the rights of disadvantaged persons in Brazil have been achieved through organized, sometimes militant, popular demand. For disabled persons, a strong Independent Living (IL) movement has grown up in the larger towns and cities. Together with parent associations and organizations of persons with different disabilities, it has successfully pressured for the passage of laws to protect the rights and enhance opportunities of disabled persons.
Fortunately, Brazil currently has a progressive branch of the Ministry of Justice, called CORDE (Coordination for the Integration of Disabled Persons) which welcomes input from disability organizations. In the last few years, CORDE has taken growing interest in promoting Community-Based Rehabilitation nationwide. In 1995, CORDE held a Technical Seminar on CBR, to which I was invited. CORDE has recently published the first Portuguese edition of Disabled Village Children. (The translation was organized by our friend Gene Williams, a disabled activist from Massachusetts who has worked closely with the IL movement in Brazil.)
A Course for ‘Multipliers’ of Community-Based Rehabilitation
From October 28 to November 1, 1996, CORDE invited me to Brazil to teach a “Course for Multipliers of Community-Based Rehabilitation (CBR)” in the northern coastal city of Recife. The text for the course was Disabled Village Children.
When first asked to teach the 5-day course, I had misgivings. The 60 participants (too many for a fully participatory process) were to be government workers active in some sort of rehabilitation or disability-related work. Required to have “at least 3 years of community experience,” they were selected from two dozen municipalities of Northeastern Brazil. After graduating from the 5-day course they were expected to become the trainers and multiplicadores, promoting CBR at the community level.
I confess I had serious doubts about such an apparently top-down, government-initiated approach to CBR. In my experience (and I have visited many community programs in different countries), the most successful and sustainable CBR programs are usually started from below by those who are most concerned: groups of disabled persons and families of disabled children. For this reason I requested that the course include
a substantial number of disabled participants (or family members) some of whom should be disabled organization leaders and activists,
home visits and discussions with willing, local disabled persons/families living in difficult circumstances, to get their perspective on needs, obstacles, wishes, and ideas for program priorities, and
hands-on, problem-solving activities with disabled children and their families, including construction of assistive devices using low-cost local aids designed for and with the individual child.
I felt that if the course could help rehabilitation professionals to work together with communities, listen to disabled persons, and relate to them as partners and equals in the problem solving process, much might be accomplished. The goal should be to encourage rehabilitation workers to empower, not merely to prescribe.
Course Preparations: A Visit to a Hostel for Abandoned, Severely Disabled Children
I arrived in Recife several days before the course, in order to make plans with the local coordinator. I also wanted to meet with leaders of disability groups and with families of disabled children in difficult circumstances to arrange their involvement as resource persons in the course. One of our visits was to a government-run institution: a hostel for abandoned, severely disabled children. For me this visit was deeply disturbing. I witnessed institutionalized cruelty to helpless children.
Though unintentional, this cruelty had become routine and almost acceptable. It stemmed from shortage of personnel, budgetary limitations, official bureaucracy, and the distance of decision-makers from the children affected. The result was to increase, rather than reduce, the children’s disability.
The 60 children in this hostel—many with multiple disabilities—are usually cared for by an average of 5 or 6 caretakers at any one time. Several appeared to be chronically starving.
Tiny for their age, they were skin and bones. Their severe wasting (marasmus) was not due to food scarcity but to difficulty with head-control and trouble swallowing. They could take only liquid foods in small sips. To prevent gagging they needed to be correctly positioned and gently spoon fed. Getting enough food into them to satisfy their calorie needs (and hunger) would require a lot of time and patience. The children’s caretakers—including nurses and social workers—were loving women who did their best. But with so many multiply disabled children to try to feed, keep clean, and care for, the few caretakers simply did not have the time to adequately feed and mother those children who needed extra help. As a result the neediest children were emaciated and stunted. Apart from a food deficit, they got much less hugging and stimulation than they needed for their minds and bodies to grow. Given the chronic shortage of personnel, even the pediatrician, psychologist, and therapists who regularly visited the program saw no clear solution. The children’s situation was stoically accepted as unfortunate but inevitable. Notwithstanding, these youngsters at least have roofs over their heads and someone to provide a bit of care for them-unlike most of Brazil’s millions of hungry street kids.
On arriving at this hostel, we were shown a dozen disabled children lined up on the porch, all sitting in special wheeled seats, or strollers. All the strollers were exactly the same, regardless of the size, spastic patterns, or individual needs of the children. Their canvas seats were held by diagonal metaltube frames. The children sat passively in a half-reclining position, like sacks of potatoes.
Not only were the stroller-seats failing to provide good positioning or stimulate head and body control, for many of the children the unhealthy positioning was leading to increased spasticity and deformity. A few of the less severely disabled children were able to take a few steps with assistance, but they had no walkers. The one walker we saw was inappropriate and broken.
Given these children’s extensive unmet needs, it occurred to me that—with some guidance and the use of their books (Disabled Village Children)—the participants in the training course might be able to make simple, individually adapted seats, assistive devices, and stimulating play-things for some of the children. With the help of the staff, we chose 6 children whom they agreed to take to a workshop to be conducted during the course.
The Course: Child-to-Child Activities
Despite my misgivings, the training course was a success. There were a lot of practical, hands-on activities. Divided into small groups, the participants had a chance to meet and talk with parents of disabled children, and—whenever possible—with the children themselves. The disabled participants in the course, many of whom were leaders of disabled organizations, provided a key dynamic. They led discussions about needs and possibilities based on their own experiences.
One day was spent mostly on Child-to-Child activities. In the morning, after watching a slide show from Mexico to spark their imaginations, the course participants first practiced Child-to-Child activities among themselves. They used simulation games, role-plays, and discussions designed to sensitize school-age children to the needs and potential of children who are different. In the afternoon, small groups of participants went into various classrooms of a public school. After some ice-breaking games, they facilitated similar activities with the children. The school kids were at first shy. But once they discovered that the adults actually listened to them and took their ideas seriously, the kids warmed up. They expressed their own doubts and fears concerning disabled persons, acted out role-plays, and asked perceptive questions. At the end of the sessions the course participants asked the kids how they liked the activities, and what they felt they had learned.
What they said they liked most was the chance to talk openly and directly with some of the disabled participants, some of whom were blind, quadriplegic, or had undeveloped limbs or other marked deformities. The students said that the activities had helped them realize that disabled people are ordinary people like themselves, with the same needs, emotions, and dreams.
The Course: The Appropriate Technology Workshop
Two half-days of the course (one afternoon and the next morning) were spent in a small wheelchair-making workshop run by physically disabled youth in a low-income neighborhood of Recife. The course coordinators and I had visited this workshop before the course started, to talk with the workers about our objectives and to request their assistance. We had explained that we hoped to bring several disabled children from the government hostel (described above), so that in the workshop the course participants could evaluate the children’s needs and attempt to make simple, individually-designed assistive devices for each child. The disabled shop-workers were eager to help in whatever ways they could.
I had my doubts about whether a workshop with so many (60) participants-most of them inexperienced with innovative, low-cost technologies-could work without becoming total chaos. I also worried that with so many adults milling about in a small, hot, non-air-conditioned workshop, the situation might be overwhelming for the disabled children, especially for those who were undernourished and in delicate health.
But my fears were soon calmed. The participants formed 6 groups, each with a bewildered disabled child. But among the participants were many educators, child psychologists, physical and occupational therapist, rehabilitation technicians, disabled persons, and— most important of all—mothers of disabled children. The different groups pooled their resources and rose to the occasion. The mothers first tried to gain the children’s confidence, talking gently to them, and then gently beginning to touch the children and take them into their arms. The children, starved for attention and human contact, began to smile and respond. A couple of the course participants with experience in evaluating children’s needs and designing assistive equipment assisted me in circulating from group to group. At first most of the participants were afraid to rely on their own observations, and to innovate. But the children’s needs were so enormous that the groups began to improvise. The disabled shop workers—whose experience was mainly with construction of metal wheelchairs and walkers—rose to the occasion and began working on innovative designs themselves, in addition to assisting the different groups when their skills were needed.
The end results in the workshop were impressive. Using cardboard, sticks, strips of cloth, and occasional bits of metal bar or tubing, the groups managed to create a variety of quite functional assistive devices for the children, including special seats, wheelchair inserts and supports for improved body position and head control, a hand splint to improve manual function, tray tables, and a variety of colorful toys, which were suspended above a child for stimulation and development of hand-eye coordination. To all appearances, the children appreciated both the attention and the equipment. The staff from the hospital, who accompanied the children, were thrilled by the discovery that important assistive devices could be so easily and simply made. They said that they would make equipment for other children at the institution, and were delighted to receive a copy of Disabled Village Children to provide ideas and guide lines.
Selected Course Vignettes
A Survival Seat for Enrique
Perhaps the most important—and potentially life-saving—assistive devices created by the course participants at the workshop were the seats and seat inserts that helped position children’s bodies and heads so that it would make swallowing and feeding them easier.
One of the children whose needs were most critical was Enrique. Physically completely paralyzed by brain damage at birth, Enrique had been abandoned by his poverty-stricken parents and eventually ended up at the government hostel. Skin and bones, he looked about 6 years old, but we were told he was 14. Feeding him was a big problem, since his body and head were completely floppy, and he had no mouth control. Although unable to move or speak, Enrique’s mental ability was apparently intact. However, his only way to communicate was with his eyes. He seemed to understand most questions, and would close his eyes to say no, and leave them open to say yes. Sometimes he almost seemed to smile. And sometimes, when asked questions about the special seat his group was making for him, tears would roll down his cheeks. He appeared to like both the seat and the attention, but would weep with frustration at not being able to communicate more effectively. The participants realized that while they were perhaps able to help Enrique in a small way—and at least make feeding him easier for his care-providers—a lot remained undone. Enrique needed a real home, a loving family, public assistance, and community support.
“And how many other children like Enrique are there in Brazil?” asked one course participant, tears in her eyes.
Juao the Shop Worker Makes his own Brace
One of the young workers in the wheelchair-making shop had one leg paralyzed by polio and walked by pushing on his weak thigh with his hand.
He wanted to know if anything could be done so he could walk without having to push with his hand (which made carrying large object more difficult). A group of course participants was assigned to help Juao resolve his problem. The group was encouraged to work with Juao as an equal in the problem-solving process, and not simply to design and make an assistive device for him. “Work with him as a partner, not a patient!"
Examining Juao’s leg, the group found that he had a knee contracture of about 25 degrees, which, if possible, needed to be corrected before Juao could walk with a brace. They performed a test to find out whether the contracture was primarily in the muscles or in the knee itself. (If in the muscles, the contracture can ften be corrected with exercise, casting, or bracing, to gradually stretch the tight muscles. If the contracture is in the joint capsule, surgery may be required.) To explain all this to Juao, the group used a life-size plywood skeleton made in PROJIMO (the community rehabilitation program with which I work in Mexico). The skeleton has ‘muscles,’ made from old bicycle innertubes, which stretch and contract as the joints move. This is an excellent teaching aid for demystifying basic anatomy. Juao enjoyed the skeleton act, and said it helped him to understand the functions of his knee.
The group decided that the first step toward improving Juao’s walking was to gradually correct his knee contracture with a night brace. Among the course participants was an orthotist (professional brace maker) who helped Juao’s group design a simple leg brace which they could make from two long flat metal bars joined by curved sections of metal tube (materials that were available in the wheelchair shop). Juao was the only person in his group with the metal-working skills needed for making the brace. But when the group of professionals started working, the predictable thing happened. Juao was left lying on the examining table, while the others began to cut, measure, and attempt to bend the pieces for the brace. Juao watched passively without comment. Then suddenly, one of the disabled participants woke up and said,
Hey! Juao is more skilled at metal-work than we are. And he knows more about his own leg. Rather than our making the brace for him, he should be making it himself, with our help. That way, if he has to adjust or remake it after we are gone, he’ll know how.
Everyone agreed. With a grin, Juao climbed off the table and took charge. Opening a copy of Disabled Village Children, the group showed him drawings of similar braces.
Juao did an excellent job making the brace. Everyone learned a great deal. But the most important lesson they learned was that of working with he disabled person as a partner and not a patient. This is the key to Community-Based Rehabilitation.
Child-to-Child: Mentally Handicapped Girls Care for Multiply-Disabled Children
The participants in the course were deeply concerned about the inadequate care that the disabled children at the hostel were receiving. They realized that the women at the hostel were far too overworked. “The hostel desperately needed more staff, more help! Children are starving because they don’t have enough attendants to feed them! But what can be done? In the present economic climate, the government consistently cuts back on budgets for public services, even as the need grows. What to do?”
Then an idea came for a possible solution. Next to the government hostel for multiply disabled children is another hostel for orphaned and abandoned mentally handicapped girls. Indeed, both hostels are part of the same institution, although managed separately. The girls are cared for in small group homes, and are taught to be as self sufficient as possible. Some of them read and write and attend normal school (a big step forward). They are also taught work skills. But finding employment is difficult. And because many of the girls have no place to go as they get older, they continue living in the hostel with little direction or purpose in their lives.
A solution to the dilemma of both hostels was evident. One hostel was desperately in need of more staff to help hold, hug, and feed the multiply disabled children.
The other hostel had a group of mentally handicapped girls who needed activities to give them a sense of worth. The 2 hostels were separated only by a high wire gate. Why not unlock it? Why not invite the older, more capable mentally handicapped girls to help care for the severely disabled children. The latter needed mothering; the girls longed to be maternal. Much of the care needed for the multiply disabled children required more time and patience than skill. They needed holding, hugging, loving, simple exercises, bathing, and above all, food. Wasn’t this the kind of meaningful occupation that many of these mentally slow girls were longing for?
Following up on this suggestion, on the second day of the workshop the coordinators of the government hostel brought one of the older, more able girls along with the 6 children. The girl, Maria, was excited and eager to help. One of the course participants, the mother of a disabled child herself, helped show Maria how to hold and handle a younger girl who had cerebral palsy and almost no body control. Maria soon learned how to position the younger child in her new special seat. Then another participant, a physiotherapist, showed Maria how to help the child begin to develop head control by holding her upright by the shoulders and gently supporting the back of her head with her hands.
The most important outcome of the workshop, perhaps, was not the equipment made, but the prospects for improving the care for the disabled children in the government institution. Several of the participants who lived in Recife offered to make regular visits to the hostel to trouble-shoot problems and to try to find solutions. An exceptional physiotherapist agreed to work with the staff of the hostel to continue teaching Maria and other mentally handicapped girls how to feed, provide exercise, and care for the younger children. Another course participant, Father Eduardo Figueroa, also agreed to counsel, assist, and if possible, find additional funding for the hostel. Father Eduardo runs a family home for 50 abandoned children, 9 of whom are disabled. Although some of Father Eduardo’s children are extensively and multiply disabled (one is paralyzed, deaf, and blind), all are well fed and very much loved and cared for. Most importantly, the older and more able children take pleasure and pride in caring for and teaching the younger ones. It is Child-to-Child at its best. Father Eduardo’s assistance at the hostel will be an enormous help.
The course for multiplier of CBR finished with an evaluation by the participants. All felt that they had learned a lot. Some persons' remarks were moving.
As one rehabilitation center coordinator spoke of her experience with Enrique, she burst into tears. “I didn’t know there were children like this in Brazil,” she lamented. “So starved, so neglected, and in our own official institutions. I’ll never forget the tears in little Enrique’s eyes when he so much wanted to tell us something, and could not.” She wiped her eyes. “But somehow I guess he told us a lot.”
At the end of the evaluation, a blind participant stood up and said, “We have learned something about Community-Based Rehabilitation. But we have learned a lot more. We have learned that what disabled activist, Joshua Malinga, said is true: ‘It is society that needs to be rehabilitated.’ Brazil is a wealthy country. We have enough resources to meet everyone’s needs, to provide a roof and food and health care for all. Yet there are 5 million homeless kids on the streets. Not far from this 5-star hotel in which we have been meeting there are famished, disabled beggars picking through garbage heaps. We who are disabled, and we who work for and with disabled people, need to stand up for the rights of all hungry and disadvantaged people, to fight for a societ where people are more equal, in which no one grows fat while others starve. It is our society that needs to be rehabilitated. This is what should be meant by Community-Based Rehabilitation.” Everyone stood up and applauded. The course was over.