By SRS Sastry, Chair, Board of Trustees, Chaitanya Trust, Bangalore, India.
The idea of starting a school for mentally handicapped children was mooted when my son and daughter-in-law visited Bangalore in 1992. My daughter-in-law has a doctorate in special education and though she lives in USA, she wanted to develop a program for the mentally handicapped in India. I got interested in the idea and therefore I registered the Chaitanya Trust in April 1993 and started working on it.
First, I visited the National Institute for Mentally Handicapped and the Hari Prasad Thakur Institute for Rehabilitation and Research in Hyderabad. The first question I faced from every quarter was why I was starting this institution. Nobody could believe that our goal was service to the disabled. They all suspected that there must be somebody in our family who is mentally handicapped and that I am starting this institution to help myself and, incidentally others. This is far from the truth, as fortunately none of our close relatives are.
Next was the search for a school building. It is difficult to convince people that intellectual and developmental disabilities and mental illness are altogether different. Generally people mistake intellectual and developmental disabilities for mental illness and when we say we are starting a school for children with intellectual and developmental disabilities they assume without enquiry that this is a sort of mental institution and are reluctant to rent their premises. Moreover, there is a shortage of accommodation in cities and this adds further to the problem.
Despite tremendous scientific developments, nobody is able to pinpoint the causes of intellectual and developmental disabilities. It is attributed to problems during pregnancy and delivery, and the percentage of mentally handicapped children all over the world is 2% irrespective of the so-called status of developed or developing countries. This is a fact to be borne in mind. Furthurmore, it is not possible to recognize mental handicap in the early stages of the child’s development. Sometimes we take it as slow development and the real problem is recognized only at one or two years of age when walking and talking do not develop. Then the parents go to medical professionals to identify the problem. This takes about a year or two. When the child’s development does not meet the expectations of parents, they get frustrated and do not know what to do as there are no facilities for training such children in every neighborhood.
In India, even young, normal children in cities travel long distances by bus to school. Mentally handicapped children of the same age cannot go by themselves and have to be accompanied by parents. Often this may not be possible due to family constraints of transportation and finance. Further it is easy to look after the child at home in the early years. Thus children are left to themselves without the benefit of training. When the child is not trained in the early stages, it may not be possible to impart training as they grow older.
When we started the school in October 1993, we expected children aged 4 to 8 year old to seek admission. However, we found children who did not have any training up to 10 or 12 years approached us for help. The school was started with the aim of giving free training, expecting the parents to contribute to the school depending on their capacity. Our experience has been that if school is free, parents do not take it seriously and do not send the child regularly.
Often parents are not prepared to spend money on the child with disabilities. Their reluctance is based on the fact that these children take many months to develop a small skill. The results of training are therefore not evident quickly. Parents forget that they have the responsibility to help their children to become as independent as possible. For this reason, it is critical to send children regularly as skills developed after several weeks to training can be lost in days.
This general apathy either to accept the intellectual and developmental disabilities of the child or to get the necessary help is also due to the stigma attached to such children by society, and the pity expressed by relatives and friends. What both parents and children need is not pity but the recognition that neither the child nor the parent is responsible for the problem and they need the help and support from neighbors, relatives and friends.
While reading books on educating the mentally handicapped, I came across a book by an author who was questioned by a parent of a normal child as to how he can help such families. He said, ” You don’t have to do much. Just visit the family and tell the parents you will care for the child for a few hours. Tell the lady to go get a haircut or do some shopping and meet her friends.” Even this much help will go a long way to reduce the mother’s agony and make her feel that she is not alone and she has the support of people who are prepared to help her.
It is not possible for any individual or group to start and run an institution without the support of society. For this reason, we approach members of society to contribute to the cause. They always praise our enterprise and say it is a noble cause but the response financially is poor. This is because this does not benefit them individually or bear fruit at a later date. We need to realize that those of us who are better placed have a responsibility to the society we are living in to help those unfortunate families not with pity but with a sense of duty.
The teachers also get frustrated since even the parents of such children do not realize the teacher’s efforts. It is necessary for parents to recognize the teacher’s efforts by sending commendation letters whenever they feel their child has benefited from the school. In the case of normal children the teacher gets commendation even if she does not put in any effort and the children learn on their own.
In starting the school for the mentally handicapped we do not claim that we can change the lives of the parents and children dramatically overnight. Our aim is to help to the extent feasible within our own limits. In spite of all these frustrations we feel proud when a child develops a small skill after months of training.
Reproduced from the Souvenir published in July 1995 on the occasion of the fund-raising benefit of the drama Kurudu Kanchana, held by the Chaitanya Trust, the Indian of the Chaitanya Educational Foundation.