5th Anniversary Seminer of JANNET

PROGRAM

Co-chairs:Mr.Yoshinori IKEZUMI,Ms.Yukiko NAKANISSHI

Look at the whole needs

It is a great privilege for me to be able to speak to all of you today. I am especially delighted to be here in Japan which is one of the few countries in the world that still provides for and tries to meet the basic needs of all its people,

including disabled people. I realized that even in Japan there are many unmet needs that disabled people still have -for equality, for work, for adequate schooling, for integration into society. But in most of the world today, most of the needs of disabled people are completely unmet.

	(OHP 1) Here you see the typical pattern around the world. In the back is somebody who has more than enough to eat. In the front is somebody who is hungry. In today's world, 1 out of 4 people does not have enough to eat. Most of the disabled people in the world belong to that group of people whose basic needs are not met.
	(OHP2) If you look at this graph, you can see that the number one cause of disability is malnutrition, not getting enough to eat and the diseases and problems related to it. This graph is several years old. Today, the number one area of malnutrition will be much bigger, will take a much bigger percentage than a couple years back.
	(OHP3) Particularly in poor or Third World countries, it is very important for people working in the disability field to remember the basic needs of many disabled people and disabled children. Too often we see what happens here. A well intending rehabilitation worker arrives at a village happily and tells the mother, "I just arranged for your deaf child to get a hearing aid and attend the village school." The mother replies, "But my child died yesterday from hunger and diarrhea." So it is important for the rehabilitation worker to look at the whole needs of that child and not just the disability. The whole needs are often more urgent than the disability needs.

What is Community Based Rehabilitation(CBR) ?

It is partly with this recognition in mind that WHO has promoted the concept and approach to community based rehabilitation or CBR. The WHO recognized the enormous unmet need. They figure that today about 3% of the world's people have important disabilities that need some kind of attention or assistance. But that only about 5% of those needs are being met worldwide. So the idea of CBR is to reach out to the people who are not reached by any kind of rehabilitation services. It is to bring rehabilitation out of the big rehabilitation centers in the cities which serve only a few people and bring the attention right into the villages and small communities where the people live. The goal is to demystify and de-institutionalize rehabilitation knowledge so it can be accessible to all people who need it.

Another important difference between CBR and institutional rehabilitation is the focus. In institutional rehabilitation, the focus is largely biomedical (has to do with treatment). In CBR, the primary focus is integration of the person into the community so it is not just working with the disabled person but with the whole community in changing attitudes to be more accepting, more open and more inviting to the disabled person. Opportunities are encouraged for education, work, and pleasure.

As a part of CBR, there is an approach to appropriate technology, simplification of technologies so that local carpenters, craft persons and school teachers can all take part in assisting disabled people and their families to meet the needs, to arrive at a society for all. 　

CBR and Independent Living Movement

In the last 20 years or so, there have been two important movements for the wellbeing of disabled people. One movement is CBR and the other is the Independent Living (IL) movement. The IL movement comes out of disabled peoples' organizations where disabled people themselves say what they need and work for their equal rights and opportunities. The strength of IL is the leadership by disabled people themselves and empowerment - self-empowerment - of disabled people. The weakness of the IL movement has been that it has largely been a middle class and upper class movement, and has often left out the poorest, neediest and most isolated of disabled people, especially in the rural areas.

Another problem with IL is that it is a concept that comes from the West, from the US and Europe. Many people in the East and the poor countries feel that independence - or living completely independently - is not the most important goal. They feel that "interdependent living" with everybody equal is more important than the independent or separate living.

The other important movement is CBR. The strength of CBR, as we have mentioned, is that it tries to reach out to the poorest, most isolated people in the small villages, and in areas that are most unreachable. But the weakness in many CBR programs as they are practiced is that too often it is non-disabled people doing things for disabled people. It also does not have strong leadership by disabled people. The goal that many of us feel for the full integration of disabled people to reach a society for all is to combine the best features of IL and CBR. In other words, to combine the strong leadership and empowerment of IL with the outreach to the poorest and neediest people of CBR.

What I would like to do now is to spend most of the rest of the morning telling you and showing you some pictures of the CBR program in Mexico with which I have been working for the last 18 years. It is a program that is located in a very poor village and run by disabled people themselves. It does combine some aspects of CBR and the strong leadership by disabled people of IL. It is an attempt to merge aspects of both approaches.

A story of a health worker

But before I begin with the description of the program, I want to start with a true story.

(Slide1)
In the villages of Mexico, one time a village health worker rode on mule back high into the mountains. When he arrived at a small mountain village, a father came out of his little house and asked the health worker, "Can you look at my son? He can't walk." So the health worker examined the boy who was crawling around the floor. The boy apparently had his legs paralyzed by polio. But the health worker found that the legs could straighten well. So he asked the father, "Have you ever given the boy crutches?" The father, a little bit ashamed, said NO, he had not thought of that. So the health worker went into the forest and cut some poles for sticks like you see here. In front of the house, he began making the crutches. The father looked over the shoulder of the health worker and said, "They won't work. No good.". The health worker, a little annoyed, said, "Wait and see."

When they lifted the boy on to the crutches, immediately the crutches broke. The father said, "I told you it wouldn't work. It is the wrong kind of wood. The wood you picked is as weak as water. What you need is jutamo - that is strong and light." So the father took the knife, went into the forest, cut some forked sticks of hutamo, and started to build the crutches. The health worker looked and said, "You are a wonderful craftsman. Look how well you know how to make these crutches." The father said, "I should know. I'm the village carpenter." The health worker hadn't even bothered to ask.

When the new crutches were finished, they lifted the boy onto them and they supported him well. The boy was so happy to be standing upright that he worked very hard and quickly began to be able to walk with the crutches. But he worked so hard that they began to rub him and cause sores under his arms. So the boy said, this time to his father, "Father, can you do something so they don't hurt me?" The father thought, ah, pochote. Pochote is a kind of wild cotton that grows on trees. So the father put some soft pochote on top of the crutches. The boy tried them and was very comfortable with them.

Well, the time came for the health worker to leave. He climbed on top of his mule again. The whole family came and said, "We don't know how to thank you." But the health worker said, "No, it is I who should thank you because I learned much more from you than you learned from me. I came as the outsider thinking that I knew it all, and had the answers about what would be good to do and how to do it. But then I learned from you how important it is for the health worker to relate to the villagers as equals and that everybody learn from each other."

Personally, I know how much that health worker learned from that experience because I was that health worker.

CBR in a poor village in Mexico

Out of our experiences in the villages in Mexico, the most recent book that we've written is called "Nothing About Us Without Us". It is a collection of stories like the one that I just told. It shows that when rehabilitation professionals work as partners and as equals with disabled people and with the parents of disabled children, they often find much better solutions that when the professionals simply prescribe from on high without including the disabled people and their families in the problem-solving process.

Now I want to tell you about Project PROJIMO in Mexico. The term 'projimo' is the word for neighbor in the loving sense of good neighbor in Spanish. But the letters for PROJIMO in Spanish stands for Program for Rehabilitation by Disabled Youth of Western Mexico. The program started in an unusual way. It grew out of a villager-run community health care program. Some of the villages involved happened to select disabled persons trained as heath workers. With the passing years, who proved to be better heal workers? Often, the disabled persons because for them it was not just a job. It was a possibility to move from a somewhat excluded position in the community to an important role. Also, because the disabled people had in many ways been marginalized and not given the same opportunities before, their hearts went out to other people who for whatever reason were not given the same chance or support, or were more disadvantaged than other people. By becoming health workers, for disabled people, their weakness became their strength. Here you see some of the early team of village health workers that decided to form the disability-related program in the village.

	(Slide 2) Here you see Roberto who was one of the disabled village health workers who started the program. Roberto is teaching a father how to repair and lengthen the braces for his son.
	(Slide 3) One of the first activities started in the new community-based rehabilitation program was organizing the schoolchildren to build a playground for all children. It is in part a rehabilitation playground but it has parts where all children can play together.
	(Slide 4) Here you see some of the children bringing poles from the forest to build the playground.
	(Slide 5) Here some of the children are building a ramp for the playground.
	(Slide 6) Here is a child with cerebral palsy playing on the ramp. This child needs exercise to stretch his tight-heel cords, so as not to walk on tiptoes. This way he gets his therapy in a way that is functional and fun.
	(Slide7-8) Here you see an enclosed swing. In Mexico as in many parts of the world, most families with disabled children have a lot of love for their disabled child. But they tend to overprotect and not allow the child to do a lot of things that could help the child learn and develop and play with other children and so on. When this mother and child came to PROJIMO, both were afraid to try out the playthings in the playground. You can see the worried look on the child. But after a few minutes on the swing, you can see how happy and self-confident the child looks. Both the child and the mother have a new sense of what is possible for the child. Also, the fact that the rehabilitation program in the community is run by disabled people provides a lot of role models for the disabled children who come there.
	(Slide9) Here you see two different swings including one made from an old tire. They try to use very low-cost simple materials so that poor families can make the equipment themselves at home.
	(Slide 10) Here, you see two brothers with cerebral palsy who were brought to the Program in the arms of their parents. The children couldn't do anything for themselves and couldn't walk. But just two days later, the children were able to take themselves out of the program. This child couldn't stand by himself because he did not have the balance. With the weight of this child in the cart he could balance and push it. The father learned a very important lesson. Here you see his hands, ready to assist, but not touching the child. The father learned to provide the minimum amount of assistance necessary to encourage the children to do the maximum amount for themselves. This is the basic principle of all rehabilitation and community development work: Provide the least amount of assistance necessary to help disabled people do the most for themselves.
	(Slide11) Here you see Bruce Curtis, a quadriplegic from a spinal cord injury to the neck, who is a teacher and peer-counselor to the community program. Bruce also worked with the Society of Disabled People in Russia to translate the book "Disabled Village Children".
	(Slide12) Here you see what we call the model home. It is made out of mud bricks but it has many adaptations to make a home easier for disabled people.
	(Slide13) Here you see the kitchen that is adapted for wheelchair accessibility.
	(Slide 14) One of the nice things that happened with so many disabled people coming into the village is that disabled people have organized and pressured all the village stores to build ramps for easy accessibility into the stores and shopping area. One of the ways that the Program helps the integration of disabled children into the schools is through Child-to-Child activities to sensitize school children about disabled children and their needs, to learn that disabled children are essentially the same as other children.
	(Slide 15) This is the fastest runner in his class. But they tied a stick to his leg so he limps and cannot run fast. So the boy is left behind. After the games, he is asked, "Do you like to be left behind by the other children?" Then the teacher asks the group of children, "What games can you play where a child is not left behind or left out?" The children think and they say, "Well, cards or marbles or games like that." They think of many different games that children play where they don't have to run.
	(Slide 16) Another activity is through skits, a role-play or theater. Here the little girl asks the boy, "Pedrito, I can't open this bottle. Can you open it for me? You have such strong hands because you use crutches." Pedrito, proudly opens the bottle very easily and hands it back. The very important lesson here is that every child should learn to "Look at my strengths, not my weaknesses".
	(Slide17) Here you see an older brother helping his younger disabled sibling.
	(Slide18) This is a therapy tank that also serves as a village swimming pool so that all of the children, disabled and non-disabled, can swim, play and exercise together.
	(Slide19) This is a farm worker theater skit to teach midwives and mothers about the importance of not overusing the medicines to speed the birth process. The overuse of these medicines is one of the causes of brain damage at birth which can cause cerebral palsy, epilepsy, deafness, blindness and other disabilities.
	(Slide 20) Here the health worker at the end of the skit shows a baby dead because the medicines were used and another baby healthy because the medicines were not used.
	(Slide 21) Special seating can be very important for a child with spasticity. It can help keep their legs separate so when they begin to walk their legs don't scissor and bump into each other. In the US and I imagine in Japan, you see very expensive special seats to provide this kind of stretching. This is a lot cheaper.
	(Slide 22) This is another special seat in the form of a fish swimming in a lake, so it adds fun to the special seating. The village children and disabled children make the toys that you see there.
	(Slide 23) Here you see the children in the children's toy-making workshop.
	(Slide24) This boy made the walker you see here, a school child. He is now helping a disabled child begin to walk with the walker. This kind of interaction is very important for bringing about integration between non-disabled and disabled children.
	(Slide 25) Here you see a 12-year-old boy that is acting as a therapy assistant to a girl with severe arthritis.
	(Slide 26-28) This is a child who had polio as a baby and it caused one leg to be shorter than the other. The short leg causes a tilt of the hips and the curve of the spine. Rather than giving the child orthopedic boots, they gave him just a simple lift in the sandals that the village children use. With the lift you can see that the hips are straight and the child's back is now straight, which prevents a lot of problems later in life. But many of the children who have had polio have severe contractures; this boy can't straighten his hip joint, knee joint and can't lift his foot because the joints are stiff. An orthopedic surgeon would say a child like this needs surgery first to be able to walk. But the village program has found that with extensive exercises, stretching exercises and then with a series of plaster casts, often these contractures can slowly be straightened without surgery. The big problem in getting families and children to do the exercises over a long period of time is that change takes place very slowly. The stretching of contracted joints is very slow.
	(Slide 29) In order to encourage continuity of the exercises, they make these little cardboard dolls called "flexiguins". What the mother does is to hold the flexiguins and the leg in the position of the child's deformed leg. Then she traces that off on a piece of paper. Every week or so she repeats this process. So if the leg is like this one week, the next week it will be a little straighter, then the next week more so and so on, until finally the knee straightens. With the series of pictures, she sees how the position is changing. This keeps the family and child motivated to continue with the exercises, and often makes the trauma of surgery often unnecessary. In Mexico as in many countries, you see the overuse and misuse of very expensive equipment.
	(Slide30) This child has spina bifida, which is essentially a spinal cord injury before birth. The child was taken to a big orthopedic hospital in the city and was prescribed this very expensive walker. But a child with spina bifida lacks strength in the back and so he tends to develop contractures of the hips, and can't straighten up. This walker, rather than correcting the hip flexion contracture, is causing it. What the village rehabilitation workers did was to take the walker away, and to adjust the parallel bars high enough to stretch the child's contractures, rather than contribute to them.(Slide 31)
	(Slide32) This is another child with spina bifida. It is very important to stretch the hips because if the child stands bending forward like this, he'll fall over. But many of these children learn to stand bent backwards. They throw their body weight back behind their hips. That way they can have their hands free to do things inspite of not having the strength in the back. This walker you see here was invented by one of the disabled workers, Marcelo. As a child, Marcelo also had to use a walker, and then had to change from walker to crutches. This is often a very frightening experience for a child because the walker is very firm while crutches wobble all over the place and the child falls. So the disabled village worker made a walker that has the crutches built into it. The crosspieces are fastened with butterfly knots that can easily be loosened. Little by little these pieces can be loosened to make the walker less stable. Finally one crosspiece removed and then another moved. The transition is gradual, rather than a sudden shift from the walker to crutches. This is an example of why it is so important that disabled people be the technicians and providers of services. They have an insight from their own experience that often non-disabled people don't have.
	(Slide 33) This is a boy who when he was 5 years old was hit by a truck and became paraplegic. In a big city hospital, he was given big heavy metal braces up to his chest. With the braces, he could stand like a tree but they were too heavy to walk. Soon the child outgrew these expensive braces. For the next five years, he went back to crawling. Then the family learned about the village program and took the boy there. The village team made for him a "para-podium" - a standing board with which he could begin to walk swinging through on the bars, the same day that he arrived. How is it that a group of disabled villagers with an average of 3 or 4 years of school learn these skills? The answer is that a lot of rehabilitation professionals come to visit this village and teach the disabled workers in the program.

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