issue 233 - July 1992
The eye of the beholder
Poverty makes disability worse - but a positive
attitude can make all the difference. Balakrishna Venkatesh
writes from India where 24 million disabled people live.
Ramu had high fever. Doctors called it polio but his parents, agricultural workers in the Indian state of Andhra Pradesh, did not understand what that meant. When they realized that their youngest child wouldn't be able to walk they took him to quacks, faith healers, witch doctors, even the district hospital, in search of a cure. This meant that one of them could not work and their already meagre income dropped by half to about 70 US cents a day. They soon got into debt and had to abandon their quest to enable Ramu to walk. The social consequences for Ramu were profound. From then on adults in the family and the neighbours in the village stopped cherishing Ramu as a child. They no longer carried him around or played with him. He became a loner. The other children in the neighbourhood wouldn't accept him as a child either. Instead of calling him 'Ramu' they started referring to him as 'the cripple'.
Ramu was fed and clothed but received nothing in the way of mental stimulation. He was seen as a burden, believed himself to be useless and, not unnaturally, became depressed. The women in the village would tell his mother, Laxmi, that she and her husband were paying for their sins or the sins of their ancestors and that whatever happened was in the hands of God.
Ramu need not have been a victim of polio if his parents had had access to information about immunization. But even if they had received this information it is unlikely that it would have been in an understandable form or one which could break through their deep-seated religious values and prejudices. I believe that the reason Ramu could not be seen as a contributor by his community was because nobody had seen images of disabled children like him doing the sort of useful tasks they can do - like looking after younger children, tending chickens, or gathering twigs. Nobody had heard of disabled people going to school, learning a trade or raising a family.
The experience of another boy, Kuppaswamy, was quite different. He came from a middle-class family in a small town in Tamil Nadu; His father, Govindaswamy, was a successful carpenter who liked hunting and would make gun-powder at home with the help of his children. One day the ammunition exploded and Kuppaswamy's hands were blown off.
Govindaswamy did his best to encourage Kuppaswamy to take an interest in carpentry and spent long hours devising ways and means to teach carpentry to his now disabled son, using wrists, feet, legs. It was time well spent. Kuppaswamy is now himself a skilled carpenter, has inherited the business from his father and manages it well. He is married, has three children and leads a full life.
While Kuppaswamy's parents had the same religious beliefs as Ramu's they had a different sense of their son. They could see the child in him and the human potential for him to be a full person. This may be because they were richer and more entrepreneurial - thus giving Kuppaswamy access to a business environment from which he could make a living.
It is certainly true that poverty oppresses disabled people and makes their situation worse. But it is not necessarily true that an environment of wealth ensures human dignity and fulfilment for disabled people. What remains crucial is the attitude of non-disabled people. Take the case of Mohan, a boy with a mild to moderate development disability. He is from a wealthy family in South India. His father is well known in the medical profession and has provided Mohan with everything he needs. This includes a suite to himself, a chauffeur-driven car and all that the electronic media can offer for entertainment. But he has no friends, no occupation, no education - nothing to stimulate his personal development.
Lalitha on the other hand is a blind child living with her grandmother, a poor agricultural labourer, in a village in Andhra Pradesh. The old woman heard of a non-governmental organization active in the area that was encouraging disabled people and their guardians and parents to attend meetings. During one of these meetings she heard how blind children like Lalitha were going to school and being educated. When she saw photographs of disabled children in school she became determined that her granddaughter too should be educated, even though it meant sending her to school 300 kilometres away.
There are millions of people in India whose experience of disability is like that of Ramu or Mohan - but few like Kuppaswamy or Lalitha. Ramu and Mohan have been dehumanized by others' perceptions of them, and forced into a culture of dependence and silence. Positive images can change the way in which disabled people are perceived.
Poor or rich, people love their children, disabled or not. The key is to enable them to see that disabled people are also contributors. If only Ramu's parents had seen the boy as a child first and then disabled. If only Mohan's father had seen him as a person who had other needs. But there is little in society to encourage such attitudes. And there is no political will to invest in methods that could bring about change.
Political manifestos of the last 45 years in India have not included disability as an issue - although the country has 24 million disabled people. No doubt 24 million is a large vote bank - bat this scattered population does not have political clout as it is not organized to campaign for its rights.
Disability is not just a medical and a rehabilitation issue. It is primarily a development issue because of the link to poverty.
Disabled people have the same needs as non-disabled people and can contribute to their own development. Income generation, education, housing, transport, land rights - all of these are vital.
For the moment the number of disabled people in India who are organizing themselves into self-advocacy groups and demanding concessions remains small. And they are not demanding equality with non-disabled people - yet.
Balakrishna Venkatesh is the director of Action on Disability and Development India, based in Banglaore, which works to empower disabled people.
Juan - drug smuggler turned therapist
I am going to tell you the story of my life. When I was five years old, my mother died. From then on, my father took charge of our family and life went on. But when I was 10 my father died too. That's when I lost the rudder to my life. I suffered until I was 13. Then everything changed. I became friends with a man who offered to help me. He was the answer to my dreams because I was so tired of living in poverty, so tired of suffering. I thanked God for the opportunity to end my misery.
The first thing my friend did was to give me a package that weighed three and a half kilograms. He also gave me a .45 revolver. He warned me that in no case was I to lose the package; that my future depended on getting it to Mexicali. The package reached its destination and when I returned my friend was waiting for me. Not until then did I realize that the package contained cocaine. 'You've passed the test,' my friend told me. 'Do you want to keep working for me?' I told him I did, and he gave me some money. I felt I wouldn't have to suffer so much anymore.
I trafficked in drugs for three years. Then one day my friend was killed by the federal police. I had learned enough about the business by then, so I decided to strike out on my own. My fortune began growing. I continued like this until I met my wife. We had a beautiful daughter together and discovered a happiness I had never felt before. I retired from the business and became a rancher. And yet I felt I was doomed because I had so many enemies. I had no fear of dying; my only concern was for my daughter. I wanted to make sure that, if I was killed, she would still be taken care of and would never suffer. When my daughter turned two, I threw a party, never imagining that it could be dangerous. I had her in my arms when a pickup arrived and several people started shooting at us. The first shots hit my wife and killed her instantly; then they hit me. With seven bullets inside me I watched them kill my daughter. I pulled out my own gun and managed to hit the pickup's gas tank, making it explode. I had killed my wife's and daughter's assassins. Then everything went blank [one of the bullets passed through Juan's spine, paralyzing his lower body].
I thought of killing myself after the loss of my family but I was never left alone. My brothers were beside me, sharing my suffering. I asked them to help me to find a way to walk again. We went to many different doctors. My fortune was almost gone when I finally realized it was all hopeless. All the doctors wanted was to make money. Then, one day my brothers found a disabled persons' project called Projimo. They offered to take me there. I had nothing to lose, so I agreed. As the days and months went by, I felt myself making progress. Now I am happy because I don't have problems, I've retired from the business and spend my time volunteering at Projimo. I feel happy because, even though I am paraplegic, I live in peace.'
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At Projimo disabled people run their own rural rehabilitation programme. It was set up in the hills of Western Mexico in 1981 and run by disabled villagers to serve disabled children and their families. The children developed their own abilities to look after themselves, help other children, and get on with projects such as building their own disabled playground. Soon disabled children were coming from all the over the country - often travelling for days and arriving hungry and penniless.
The idea of the program is to respond to human needs as they arise - and this has brought a major change In recent years There has been an influx of physically and socially disabled young adults with spinal cord injuries caused by bullet wounds. Most are young men who come from the underworld of the cities, from the rapidly growing 'culture of violence' or la vida mata. After rehabilitation many chose to stay, becoming project leaders and skilled craftspeople. Meanwhile other centres based on the Projimo model are springing up for children in other parts of the country.
Juan was interviewed by David Werner, founder of the Projimo project. Werner believes that Projimo should respond to the needs of people like Juan. 'Culprits are also victims. Even people with the most violent backgrounds turn out to be very human individuals trapped by circumstances. At their worst they seem heartless. Yet they may be surprisingly loving and tender with the loneliest people. At Projimo the same Juan that, during a drunken binge, terrorized an elderly diabetic schoolteacher gave special therapy to a six-year-old boy with muscular dystrophy. His gentle touch had a marvellous effect on the child who up to then had been fearful, whiny and crying any time anyone came near him, With Juan's attention he became self-assured with other people and enjoyed the exercises which Juan had so imaginatively turned into games.
The root problem, Werner believes, lies not with 'deplorable' young people like Juan but 'in the society that deplores them. It lies in the mushrooming city slums, mounting homelessness and unemployment, the widening gap between rich and poor. It lies in the systematic undermining of agrarian reform measures which forces more and more poor farming families off the land and into the "septic fringe" of the cities. It lies in the international forces that impose devastating "structural adjustment" and "free trade" policies on debt-ridden countries.'
Project Projimo, can be contacted through the Hesperian Foundation, P0 Box 1892, Palo Alto, CA 94302. Tel (415) 325-9017.