At the precipice of despair

Print edition : July 20, 2002

Fifty million Indians with disabilities, most of them in the countryside, remain on the outer periphery of public policy and social action, often deprived of basic human rights.

FOR them, the world is beyond their reach. The most ordinary of aspirations - to enter school, work in the fields, go out to worship, get married, the prosaic ingredients of even the most humble person's workaday life cycle - are frequently denied to them. These are not even distant dreams for them. The most profound and consistent denial of even minimal human rights - it is remarkable. An estimated 50 million persons with disabilities remain at the outer periphery of both public policy and social action in India.

More than any other large dispossessed social group, people with disabilities are invisible: in political agendas, in human rights struggles, in development strategies, in social science research. But even more strikingly, rarely do we encounter disabled people in schools, farms, factories, playgrounds, cinemas, streets, markets, temples, mosques or churches, or at family celebrations.

We know almost nothing about the lives of persons, and even less about women and girls who live with disabilities in the countryside. What really is life like for them, how do they cope, what do they suffer, what are their dreams?

It is to seek answers to questions such as these that a team of researchers fanned out to a sample of 41 villages across Andhra Pradesh. The majority of the researchers were themselves people with disabilities. The study was commissioned by the State government, which approached a development support agency, ActionAid India, to lead a participatory study into rural disability. The findings of this study are to form the foundations of the largest State programme in India for disabled people's development. The researchers, youthful and energised by their own lived experience of disability, were equipped with the basic tools of social science research methodology before they went out in teams for the study. They camped for four or five days in each village. I accompanied them on a small leg of their search. Their findings constitute a harrowing indictment of state and society, and a mirror of a victimised people who live routinely at the edge, invisible and dispensable to the rest of the world that they inhabit.

In any village when the researchers start out by asking how many people with disabilities live there, almost invariably the people would reply: "There are hardly three or four disabled persons in the village." But then a quest would begin for these hidden, forgotten people. Disabled people themselves and their care-givers would lead the team members to new disabled persons, and they in turn would identify more like them. With wonder, village residents would discover that in their own village, which they thought they knew so well, there were tens of disabled people whose existence they were not aware of. In a village of 1,000 people, one may discover as many as 50 people with disabilities who live hidden behind mud walls of their homes. In the course of the survey of 41 villages, researchers were able to locate 1,843 people with disabilities in a total population of 73,195, which means 2.52 per cent. Even as the teams were leaving the villages after completing their investigations, more people with disabilities were discovered. Global estimates place the ratio of people with disabilities to the total population at an average of 5 per cent. So dense is the social invisibility of these people that even such an intensive survey by a deeply motivated team could barely identify half of them.

A demonstration against the exploitation and neglect of the disabled. During a study on rural disability in Andhra Pradesh in most of the villages, the researchers' quest for disabled people led to the discovery of many of them whose existence the local people were not even aware of.-

One striking finding of the study was of the nearly insurmountable physical and social barriers that people with disabilities confront in accessing public spaces and common properties. Gaps and failures in village infrastructure such as roads, drinking water sources and school buildings disproportionately constrain people with disabilities. Temples are built on hill-tops, and degraded forests require people with disabilities to walk longer than is physically feasible for them. More grave are social attitudes, of shame and ridicule, beginning often within the family, which further immobilise people with disabilities. The result is a sense of isolation, dependency and pervasive low self-esteem, which the researchers encountered widely amongst people with disabilities.

In particular, people with disabilities felt humiliated by their sense of dependency for sometimes even the simplest acts of daily living, such as bathing, eating and attending to nature's call. On many occasions researchers found in impoverished homes, where all care-givers had to go out for wage work, severely disabled people who were forced to remain without food and care for the entire day. It is important to recognise that dependence can be reduced significantly through education and medical assistance, but the study highlighted how both were beyond the reach of most rural people with disabilities.

The research found that more than 60 per cent of people with disabilities had had no kind of schooling. More than half of the remainder did not go beyond primary school. Modern educationists believe that it is best for both children with disabilities and 'abled' children to study together, in integrated schools. This study revealed much higher levels of integration in rural Andhra Pradesh than the national average. During the study, the teams observed that the more rural the school, the more inclusive it was, and teachers were tolerant of children with disabilities within their classrooms. The survey, however, found that not a single teacher was trained to work with children with disabilities, nor did they have any special teaching aids. Therefore, whereas children with locomotor impairment were able to keep pace with the class, children who were mentally slow, or speech- and hearing-impaired, or visually handicapped felt isolated and marginalised in the course of teaching.

But even for physically disabled children, especially girls, education is a daily struggle. Both of Varalakshmi's legs were weakened by polio, and she has to crawl to her school every day on her hands. Children of her village, Kanakamidi in Ranga Reddy district, jeer at her and call her kunti or cripple. Her classmates go to school in groups, but she travels alone by a shortcut. There are stones and thorny weeds on this path, which have calloused her hands, but shame and the distance still bar her from taking the main road. The greatest difficulty that she faces in school is that there are no toilets. It is hard enough for other girls, but Varalakshmi has to suffer the mortification of her bodily functions in school every day.

No school had ramps or special toilet facilities for its disabled students. Only 1.1 per cent of the pupils accessed government scholarships for children with disability. Disabled children reported that even water taps were often too high for them to reach.

But the picture was not universally dismal. We visited a high school in Moinabad village (Ranga Reddy district), in which a girl with callipers unselfconsciously and cheerfully danced with two classmates in the customary welcome dance for visitors. In Badguna village (Nizamabad district), a mother we visited proudly showed us the achievements of her hearing-impaired son, who was ahead of his entire class in studies. As we sat in his home and he solved complex problems in mathematics, two "abled" friends arrived to call him out to play. They communicated effortlessly in sign language, and as we walked around the village later, it was clear that his handicap was no impediment to his acceptance as the leader of the gang of boys.

The study indicated that for disabled children of impoverished rural parents - agricultural workers and small farmers - the chances of going to school, and remaining within it, are very low. This is particularly the case where mothers have to do wage work to sustain the family and therefore cannot take the child to school. Girls are more burdened than boys because they have to look after the household work and take care of their younger siblings. Disability was consistently found to be no barrier only to the conventional domestic duties of house work of girls and women.

Aids and appliances as well as correctional surgery can do a lot to assist persons with disability to overcome the constraints imposed by their biological condition. But although modern technology can potentially enhance greatly both the mobility and the ability for communication of people with disabilities, the study reveals that even low-cost assistance is beyond the reach of most rural people with disabilities.

Of the 1,843 disabled people surveyed, only 123, or less than 7 per cent, had received any kind of disability aids and appliances during their entire lifetimes. But even among the few who were fortunate enough to access these, most were unable to use them for any length of time.

Of the 7 per cent who had received aids, more than half were those who received tricycles, sometimes free of cost, sometimes at a price. Some reported that they had to bribe local authorities to sanction them the tricycles. But they invariably found that the tricycles had been designed for an urban topography, and they were difficult to manoeuvre and maintain in the undulating, untarred, stony rural pathways. Similar problems were encountered with crutches and callipers, which were manufactured for urban contexts from heavy materials that could not be repaired in the village.

Only eight persons with hearing difficulties received hearing aids. But once again, even for the fortunate few who received them, the quality was inferior, and the device echoed noisily in their ears, causing frequent headaches, and the little gadgets often broke down. Therefore all the users covered in the survey ultimately had abandoned their use.

The researchers could not find medical records of even a single person with disabilities who underwent corrective surgery or modern medical interventions to reverse or improve their condition. One woman health worker whom they interviewed said she was aware of only one person with disability in the entire village.

The study found that 30 per cent of people with disability, who were in the working age group, had absolutely no opportunity to work, and that they were fully dependent on the members of their family. They included persons with leprosy, visual impairment, and severe mental and multiple handicaps. Although many of these persons, especially visually handicapped adults, are capable of productive work, their families and the larger community regarded them to be incapable. Nearly 20 per cent were children or old people, whereas the remaining 51 per cent were engaged in the rural economy.

However, with very few exceptions, they had low-end work - uncertain, barely averaging seven to 10 days a month, with niggardly wages, varying from Rs.15 to Rs.35 a day. The large majority, around 81 per cent, were found to be engaged in agricultural or non-agricultural wage work. But they reported that even this low-wage employment was available only when other workers were not available, or during peak agricultural periods. Even such employment was highest for persons with physical disabilities, whereas other disabled people such as those with hearing impairment were considered unsuitable because of difficulties in communicating work demands.

In non-agricultural rural communities, barriers to productive employment run even higher. For instance, people with disabilities are never engaged by marine fisherfolk in fishing operations. At best, they dry or knit nets or make ropes, earning as little as between Rs.100 and Rs.300 a month. Similarly, in tribal communities that are still primarily dependent on gathering non-timber forest produce, the difficult undulating terrain becomes a barrier to their self-reliant forest-based existence. Women are further burdened at work, because in spite of their disabilities, in most cases they are still expected to fulfil all their responsibilities of domestic work and, in addition, earn a living in a highly unequal market.

LOW and uncertain incomes mean that many people with disabilities and members of their families routinely live with hunger. Even the coping mechanism of seasonal distress migration is usually barred to such people. In the survey, we encountered very few people with disabilities who received any kind of disability pension, or food aid, to protect them through seasons of hunger. The situation is even more tenuous for aged persons with disabilities who lack younger care-givers.

This investigation found the highest, frequently tragic, levels of vulnerability and social exclusion among rural women with disabilities. Most of them were forced to marry in highly unequal situations, as second wives to much older men, widowers or divorced men. The large majority of women surveyed reported that they were treated mainly as unpaid domestic labour and sexual objects, and suffered high levels of physical and psychological domestic abuse, sometimes desertion. Girls with disabilities, particularly those who are mentally challenged, were found to suffer from routine sexual abuse and unwanted pregnancies.

I recall a poignant visit to the home of Aliveulu, a woman with speech and hearing impairment. She sat in a corner of her mother's home in the village, isolated from all communication in her silent, lonely world, her face a picture of settled grief. A member of our team was herself hearing-impaired, and she communicated with her in sign language. Soon an animated conversation was in progress. She had been given in second marriage to a man much older to her. Except for sex and hard domestic work, he had no interest in her. She finally left him and returned to her mother's home, where she felt just a little more valued.

The survey also highlighted the problems of the care-givers of rural people with disabilities. I particularly recall the young mother of two children with congenital multiple disabilities in Tipparti village. One son was three, the other two years older; both could not move, eat or perform their bodily functions without help. They neither spoke nor responded, nor even turned on the bed without assistance. The mother wept and said that she had not been able to leave her home even once in the past five years because of the unrelenting need to take care of the children. Her husband was an agricultural worker, who alone could work outside the home to bring in money and food. Both parents were desperate and spoke of suicide. I have rarely met anyone so decisively exiled from hope as that young mother.

Rural families with members who are disabled were found to carry a variety of burdens: social, economic and psychological. There was a pervasive sense of shame and stigma, and families often felt isolated. A family that went to a temple to make ritual offer of hair of a disabled boy, Durgareddy in Vaguvalasa village (Vizianagaram district), was turned away. Many care-givers spoke of their sense of deep despair, and suicide was not infrequently mentioned as a serious option.

In Shilarmiyagudem village (Nalgonda district), a mentally challenged young woman was being cared for by her elderly grandmother. The girl's parents had committed suicide as they found the burden of the disabled child too hard to bear amidst their poverty. Their old mother was far more resilient and has fought many years to keep both bodies alive.

In this way, across our countryside, shrouded from our collective view and conscience, people with disability and their care-givers somehow are living out their lives, surviving, but only just, most often at the precipice of dark despair. It is probably only when they organise into a social and political collective voice and assertion that an uncaring state and society will finally be forced to act.

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