by M. Miles, 1994,
These notes on CBR were written for the International League of Societies for Persons with Mental Handicap (the ILSMH, now known as "Inclusion International"), to provide a short explanation in ordinary language. It is meant for people who find it hard to learn and discuss abstract ideas, but who wish to give their views, as service users. (One service user helped the writer, by reading a draft of the pamphlet and crossing out whatever she did not understand or did not like). It was produced as a pamphlet for distribution at the World Congress of the ILSMH at New Delhi, 1994. The term 'person with a mental disability' appears in the version below, replacing the older term 'mentally handicapped'. (No term has yet been found that pleases everybody).
1. Community Based Rehabilitation (CBR) began as an idea. People worked with this idea in different ways, so that 'CBR' now means many things. If we start again with the idea, we will see why people use it in different ways.
Disability in Villages & Small Towns
2. To look at the idea of CBR, we must go back in history. In most times in the past, people lived in villages and small towns. They did not have hospitals or schools. Whatever they needed to learn, they learnt from their mothers and fathers and older family members. If people had a physical or mental disability, their families and neighbours tried to help them. For example, a child might lead a blind person around the village. Grandmother spent extra time at home teaching a child with a mental disability to talk. The men in the family made a wooden crutch to help a lame person walk. One of the neighbours learnt to talk with deaf people who make signs using their hands.
3. Disabled people found some work to do in the fields or at home that suited their abilities. People with mental disabilities were given jobs that they could learn easily. People whose disability stopped them from doing ordinary work found something else to do, like fortune-telling or massage or music. When disabled people had no family to help them, and could not earn enough to live on, they begged food and shelter from other people in the village or town.
4. Even if everyone helped, it was still a hard life for disabled people. There were things you wanted to do, but could not do. You might get less to eat than other people, especially if you were a girl or woman. There were problems about finding a wife or husband for you. And even if other people helped, they might also sometimes tease you or be cruel. Sometimes they said you had a strange 'spirit' in you, which made you disabled. But you made the best you could of your life. You learnt how to find your way around, and how to deal with other people in your village or small town. You had a place there, even if it was not a very good place.
5. Disabled people sometimes went to a religious leader who said prayers for them. Or they might go to a person who was skilled at healing. The healer or religious leader might live in the same village, or in another place, far away. Perhaps your family argued among themselves, whether they should spend time and money taking you on a journey to see a skilled healer or a well-known religious leader.
Disability in the City
6. Some people lived in cities, where there might be schools and a hospital. If you lived there, and you had a disability, your family might pay the teacher to give you a place in school along with other children. If you were good at learning, the teacher did not mind whether you were disabled. In some places, the teacher also had a disability. But if you learnt your lessons very slowly, you fell behind and your family stopped paying for you to go.
7. In the village, one healer tried to treat people with any sort of sickness or disability. But in the city, many doctors worked in the hospital. Each doctor might choose one sort of disease or disability to make a special study of it. As knowledge increased, these specialist doctors became very skilled and taught students about their speciality. The more people they treated in their speciality, the more experience they gained, within the hospital. People began to come from far away, and would wait a long time and pay a lot to see a doctor with special skill to help their disability.
8. What was happening was good in some ways, bad in other ways. The good thing was that in the city hospitals, knowledge and experience grew bigger and stronger because of specialisation. Several specialists could share their experience and discuss what they knew. They taught many students, so the knowledge was not lost when they died. They set a high standard of knowledge in each speciality. They made sure that students reached a good standard before being allowed to work as doctors. By doing these things, the hospitals became 'institutions'. In the institution, knowledge and skills were developed and students were trained to a high level. They in turn gained experience and trained others later on.
9. What could go wrong in these institutions? One problem was the specialisation. For example, if you were blind, you needed someone to look at your eyes, to find out if they could be put right. But if the eye specialist could not help your eyes, you still needed to know how to move around at home, how to go down the street and how to find some work that you could do. In the village, the healer knew your home situation, and could advise you and your family about everything. But the eye specialist, in the city institution, might be interested only in your eyes. Even if the specialist wanted to help, he might not know anything about your normal life at home. A specialist who worked all the time on one sort of disability, teaching students about it and discussing it with other specialists, might forget how to talk to people from a village.
10. Another problem was that specialists in an institution sometimes charged a lot of money to give treatment and advice. Rich people in the city could pay to get help, but poor people could not afford so much. The village healer, and the religious leader who said the prayers, did not charge too much. They knew how much each family could afford to pay. Another problem was that the institution in the city might be a long journey from your village. It cost a lot to go there, as well as having to pay the specialist.
11. With so many problems, why did anyone want to go and see a specialist in an institution? Why not stay in the village, and see a person with healing skills who lived near and who understood your situation and knew your family? In fact, many people continued to do that. But if the local healer was not able to give any relief to their disability, some people looked for a specialist with more knowledge and experience. If a family had only one son, and he was disabled, they travelled everywhere and paid a lot to try to find a cure.
The Best of Both
12. For many people in the world now, it is still a big problem to get help for their disability. City institutions are far away and cost too much. Even if you go to one, the help you get there may not be right for your home and family in the village, or in the poor part of the city. Some people ask, Why can't we have the best of both? Why don't we get the knowledge from specialists, and let people have it in the villages and towns where poor people live?
13. This is a big question. And people ask more questions. Some ask, Why are disabled people always poor? Why do they get less education than other people? Some disabled people say, We have a right to live like anybody else, and to have our share of good things. We should not be looked down on, or called by names that put us down. Some people say, Disabled boys and men get help, but disabled women and girls get none. They say, Our disability would not be a problem, if houses and streets and schools were built so as to make it easier for us.
14. Now we get to CBR. The idea of CBR is that disabled people should have the right to a good life. The help they need should be available to them, at a low cost. It should be offered to them and their family in a way that suits their usual way of living, whether in a village, a town or a city. They should have education like everybody else. They should be able to take up jobs and earn their living. They should be able to take a full part in all the activities of their village, or town or city.
15. The idea of CBR is that, even if people learn very slowly, or have problems seeing or hearing, or find it hard to move about, they should still be respected for being men and women, girls and boys. Nobody should be looked down on, or treated badly just because they have a disability. Houses, shops and schools should be built in such a way that everyone can easily go in and out and make use of them.
16. Information should be given to people in a way they understand, not only in writing, which is hard for people who cannot read or have problems seeing it. Information should be given in spoken forms as well, so that everyone has a fair chance to use it. To do all this would mean a lot of changes. But they would be good changes, because everyone could live a better life, helping each other and respecting one another.
Different Ways to CBR
17. We began with CBR as an idea, which people use in different ways. In fact, CBR is a bag of ideas. Most people agree with the main idea, that disabled people should have a better life. But people have different ideas about how it should be done. Around the world, people live in many different ways, and have different beliefs about what people should do. So, people use the CBR bag of ideas in many different ways.
18. Some people think the government should take money away from the city institutions, and use it to pay for more people with healing and counselling skills in villages. Some people want specialists to go out from the city and travel round the villages, giving everyone a chance to see them. Some people want to send village healers to the city for training, so that they could go back to the village with a lot more knowledge and skills.
19. Some people say that we should listen and write down what each specialist says to a lot of disabled people. We would find that each specialist says some of the same things to all the disabled people they treat. We could put those things in a book, or in radio broadcasts, using simple words. Then many people could read or hear it for themselves. They could follow the advice at home, without needing to see the specialist. We could also collect all the good ideas that disabled people have, so that other disabled people could use them too. People who find it hard to tell what they want should have the chance to talk it over with their families and friends and people they trust, to be able to say what would best help them.
20. Other people think that all this is a waste of time. They say that governments are made up of rich and powerful people, and will never do anything good for poor people. They say that poor people and disabled people should fight to get their rights. Nothing will be gained without a fight, with disabled people leading the way.
21. There are also some people who do not like CBR. They say there are too many changes going on in the world. Maybe they feel pity for disabled people, but they don't think anything can be done. They say, We never did this before, so why should we do it now? Other people have a different reason for not liking CBR. They say, It is good to have institutions with specialists who get more and more knowledge, even if they treat only a few people. After a few years, their knowledge and skills will become widely available, by training students, writing books and making radio and television broadcasts. If you stop giving money to the specialists, they will never find any new methods or treatments.
22. With so many different ideas, it is not easy to see what should be done. To make changes in a whole country takes a long time. But people can start to make changes in their village, or in the part of the city where they live. People have been making small changes for several years. Disabled people are speaking up and saying how they would like to live.
Now they say, It is time to move forward with CBR.