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"We were very worried and fearful for his future when he was born and very pessimistic. Now it is just the opposite! We are confident that one day he will be able to work to improve the lot of other vulnerable human beings."
A group of parents of disabled children met together for the first time in Mohammadpur Thana, in 1999, to share their experiences. The idea was to develop a forum for parents of disabled children to promote inclusion from the very early stages of their lives. The meeting was organized by SARPV (Social Assistance and Rehabilitation for the Physically Vulnerable), a local non-governmental organization.
The meeting was successful in enabling parents to share their personal stories. The stories reflect many common issues such as the search for a cure, the high cost of medical treatment, and the sometimes hostile attitudes which both the children and their parents have experienced. Many of the parents told of their initial despair and ongoing isolation. In several cases their own attitudes to their experience have been transformed. They are now hopeful and optimistic about the future having come to terms with disability.
The meeting was called to talk about all aspects of inclusion, not specifically about including children in education. It is likely to take time before that becomes a priority, although some of the parents mention their children's education in passing.
Mrs M.B.
Our daughter, Nashit, is 4 years old. She has trouble with walking and she also has fits which can happen at any time. Doctors have advised us to let her have an operation on her leg but her grandfather did not like the idea. He thought the operation might not be successful, so we did not go ahead with the idea. She does have treatment for her fits and takes her medicine regularly. We have tried every kind of treatment. But we remain hopeful. Nashit is very intelligent and we believe that Nashit will establish her place in society like any other non-disabled child.
Mrs T.G.
Our son, Zeebon, has been physically disabled from birth. He is 18 years old and his disabilities do not stop him from leading a normal life. He has taken his HSC examination this year and we are very hopeful about his future. We are sure that one day he will establish himself in society with honour and prestige.
We were very worried and fearful for his future when he was born and very pessimistic. Now it is just the opposite! We are confident that one day he will be able to work to improve the lot of other vulnerable human beings.
Mrs H.B.
My son's name is Mamun and he is 14 years old. He became physically disabled after he was ill with a high fever. We took him to a paediatrician and he told us that Mamun's condition will not improve. Then we took him to another doctor. He suggested that we make a box and put Mamun in it and told us that this would help to improve his condition. But Mamun never liked to get into the box. He would cry loudly and we could not bear to hear his cries. So I stopped using the box.
Mamun went to school up to class four. He is quite skilled in repairing electronic equipment. I will help him with this. I plan to buy him a wheelchair to aid his mobility. The rest of the family do not neglect or mistreat him at all, but he does not like to go out of the house.
Mrs S.
We have three children; Kamruzzaman is our eldest son and is 18 years old. He is mentally retarded and suffers from epilepsy. I never take him out or allow him to take part in any social gathering because I am afraid he may have a fit at any time. Once I did take him and he had a fit. It was awful. Every guest at the function crowded round and blamed me for being greedy and bringing him because I wanted to eat the good food at the party! I burst into tears and left.
For the last ten years since this happened I have never taken him out of the house. Kamruzzaman stays at home alone. There is no way I can take him with me. Nor does he go to school. That, too, was a bad experience. The teachers told me that Kamruzzaman upset them and was disturbing to the other children. His schooling just stopped. I tried to get treatment for him and spent a lot of money but it was no good; there was no improvement.
Mrs N.
My daughter's name is Sumy. She is 18 years old. She has been physically disabled from birth. She suffers pain in every joint in her body. She can walk by herself but she is not able to keep her balance. The doctors say there is no treatment for her condition. She should have physiotherapy on a regular basis. Now that Sumy is grown up I think she should do the exercises on her own, but she does not do them.
I too feel very embarrassed about taking her to social functions. Some people look her up and down in such an awful way that I don't know what to do. I feel like hiding myself and my daughter! Now I am planning to give her some skills training and to give her some property in her own name. I will also try to find a gentle bridegroom to arrange a marriage for my daughter.
A. R.
My son, Mamun, is 18 years old. One of his legs is impaired. He uses a crutch to get around. He went to school up to class 8. Now the problem is that he is not able to concentrate for any length of time. I have tried several ways of making him learn some type of work so that he can be self reliant but I have failed. I am ready to do anything if only he would agree to learn a work skill.
D. R.
I have four children. Tomal is my second son. When he was 6 months old he fell ill. Since that time he has been mentally and physically disabled. His whole body is totally paralysed. I used to think, "Why has this happened to me? Is it a punishment for my sins?" It was hard for all our relatives. Only after 16 years have I realised there is no point to these questions. It helped when a well-wisher pointed out to me that it was not my responsibility to find out why this had happened. That helped me to change my thinking. My pain and sorrow left me. Now I feel really happy. I think my son is very innocent and I feel that in loving my son I am serving my God. Like every other parent who has spoken we also spent a lot of money for treatment for our son.
Mrs T.
My 18-year old son, Sobahan is also mentally retarded. Right now he is receiving education at the Bangladesh Institute of Mental Retardation (BIMR). The trouble is that he behaves well with the strict discipline there, but at home he is uncontrollable. He never thinks of trying to do something by himself. He thinks, "My father was wealthy and left a lot of money so why should I work?" But I always take him to social gatherings so that he will learn from his environment. I have also spent a lot of money on treatment for him. Now I feel he needs to learn some sort of skill so that he will be able to manage on his own.
M.D.S.A.
I was a freedom fighter and was injured during the war. My son Quium is mentally and physically disabled. But I think he has the ability to learn a skill and this will help him stand on his own feet.
A.G.M.
Maksuda Sultana Shanu, my second child, has an impairment in her leg. Her disability does not create any barriers to her leading a normal life. This year she will pass her BA examination. She also writes good poems, which have been published. I am very hopeful for her future.
Everyone agreed that we must continue to meet to discuss ways of helping not only members' children, but also other poor and vulnerable disabled children. We all decided to meet on the last Friday of each month. Another decision was that the meetings should be in each member's house in turn and that our aim should be to discuss our problems and look for solutions. We also agreed that we should all take part in going from door to door visiting poor disabled people to try to get them involved.
"We hope that, through their regular meetings, the group will decide to lobby both government and non governmental organisations to further the development of their children. In this and other ways the group will raise awareness in society of the rights of and opportunities for their children." SARPV Programme Officer
Bangladesh became a separate state in 1971. It has a population of 127 million and is one of the poorest countries in the world. About 60% primary-aged children are enrolled in school and in rural areas over half the children do not attend. Girls are still particularly disadvantaged educationally.
Schools that exist include children with moderate impairments among their pupils. However, any particular needs of individual children are unlikely to receive any attention in practice, even though the government has issued teacher guidelines for students who fail to make progress.
Bangladesh Rural Advancement Committee (BRAC) has initiated a non-formal primary education programme, particularly for children with mild learning difficulties. Local women are recruited and trained in learner-centred methods and are supported in teaching basic functional skills. Children who learn well are encouraged to help the others. (See 'Building for Inclusion' in Enabling Education Issue 4.)
A national organisation for parents of disabled children was set up in 1978 and obtained funding from a Norwegian parents' organisation (NFU) five years later. The Society for the Care and Education of the Mentally Retarded (SCEMRB) now has 40 branches all over the country, most of which provide special classes or a school, often in rural areas. It also set up the Bangladesh Institute for Mentally Retarded Persons (BIMR). An example of the way parents can influence change in the education of their children. However the vast majority of families in Bangladesh have little or no access to the services that SCEMRB and BIMR provide and the daily care and education of disabled children is provided by the extended family.
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04/06/2001