In India, an effort to better the lot of the mentally handicapped
WHEN some workers were fired in a small packing factory in Bombay, Vedant Modi was very upset. He asked the factory owner, ``Why are you sacking them? They haven't done anything wrong.'' This was a little out of character for Mr. Modi. He had been kept on the job for the very reason that he did not talk back to the supervisor or fuss about the work he was given.Skip to next paragraph
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Modi, 20, is not a militant trade unionist. In fact, he doesn't belong to a union, and this is his first job.
What is unusual about him is that he is working toward the mainstream of Indian life despite the handicap of mental retardation. He lives with his family in Bombay and commutes alone to his place of work by bus.
The transition to the margins of a normal, productive life has not been easy. His progress is the result of long and painstaking care by Modi's mother, Swarupa Modi, who has labored hard to develop her son's abilities and give him a sense of confidence.
Such qualities have been identified as necessary by individuals and organizations trying to change the social stigma and sometimes cruel environment traditionally faced by the mentally handicapped in India. The physically handicapped tend to be more easily accepted in Indian society, because their afflictions are seen as accidents of nature. The mentally handicapped are seen as somehow reflecting parental failure. Even their families often find it hard to accept them. Mothers often bear the burden of blame and care.
Official policy toward the mentally handicapped is governed by the outmoded Lunacy Act of 1912, which makes no distinction between mental illness and mental retardation. Moreover, funds and facilities for care appear negligible in relation to the need.
While no proper census has been taken, official estimates place the mentally handicapped at 3 to 4 percent of the population. But experts in the field suggest that 5 to 6 percent is a more realistic number, and this would mean a total of 40 million people or so - more than five times the population of New York City.
A survey conducted by the Association for the Welfare of Persons with a Mental Handicap (AWMH) showed widespread ignorance and indifference to the special problems of this huge group. The organization has launched a major public relations campaign to counter these attitudes.
Vedant Modi's mother, a gentle, soft-spoken woman, has become an active participant in that effort. She recounts her first reactions on learning of her child's handicap:
``When the doctor told me, I didn't know anything about Down's Syndrome. I felt a terrible sense of guilt and frustration. Then I said to myself, `What can I do to help him?' Luckily my family was very accepting. We live in a joint family which has seven children, so when one child outgrew Vedant, there was always another he could grow up with. It turned out to be a very nice fit. My husband and two sons were very cooperative.''
Mrs. Modi is now vice-president of the AWMH, the most successful of several organizations that have sprung up in India to protect the rights of the handicapped and to change public attitudes toward them. It was started in 1976 by an American woman, Gladys Kothawala, who lives in the city of Pune with her Indian husband.
A friend with a mentally handicapped child was complaining how hard it was to get information about care facilities, so Mrs. Kothawala suggested that they start an organization to make such information available to parents.
The AWMH helps schools conducting special education programs, trains teachers, raises money for research, organizes vocational training, and is trying to build a shelter/workshop where some older people can be housed.
The organization is also training athletes to participate in the Special Olympics sponsored by the Eunice Shriver Foundation of the United States. Last March, in a gaily decorated sports stadium in Bombay, 1,000 children from all over India participated in a qualifying meet for the Special Olympics, which was held this summer in Indiana.
Aloka Guha runs the free early-intervention clinics started by the AWMH in six suburbs of Bombay.
``Our programs are community based,'' says Ms. Guha, who was trained as a therapist in Canada. ``It takes six or seven months for each family to really get going. At first they expect injections. They see our work as miracle therapy; and when it doesn't work instantly, they get dejected. But we try to give a great deal of parental support. We find enormous improvement in children who come to these clinics early enough.''
Guha adds that in India it is important to give a child a sense of personal adequacy, because only if he accepts himself will he be able later to withstand the rebuffs and taunts of society.
Swarupa Modi, from her own experience, agrees with this assessment.
``It is generally difficult in India to accept the mentally retarded. But if only people knew that early training could help them, it would make a big difference. The more opportunity I give my son, the further he is going to go. This wouldn't have happened if I had been guilty and kept him away.
``There is no limit to how far you can go with them, but first they need acceptance as normal people,'' she says. ``The hostile attitude toward them really reflects our own limitations.''