Rehabilitation of the Rural Disabled

To be born into rural poverty in India is to began life with a handicap. For it often means a helpless and stoic acceptance of a variety of social ill-hunger, disease, squalor, illiteracy and a daily battle for the basic necessities of life. If in addition, a person belonging to this large segment of the rural poor is born with, or due to some unfortunate circumstances acquires, a disability, then he or she must face life with double handicap. Every problem that confronts the able-bodied, afflicts the disabled person in a more intense and chronic form.

The rural disabled are at a disadvantage when compared with their access to resources, employment opportunities and rehabilitation is severely restricted. They often comprise the most neglected, marginalized and unlettered of their community. They are usually denied education and the right to enjoy normal social interactions and relationships. Families rarely take the trouble to educate their disabled daughters and disabled women are not given a change to find fulfillment in marriage and motherhood. Employment opportunities for the uneducated and untrained disabled are so limited that the disabled person is considered a burden on the family, a drain on their meager finances.

Some estimates say that almost 70-80% of Indians with disabilities live in rural areas while most of the country's rehabilitation centers are situated in urban areas. To transport the disabled person to these centers for appraisal, treatment or training is an expensive process, involving not only the cost of travel but also the loss of daily wage for the escort. It has now been established that segregation of the disabled into protected environments and special institution is not only dehumanizing but also prohibitively expensive, allowing only a very small percentage to avail of the facilities.

Government intervention is inadequate because the care of the disabled comes somewhat low on their agenda when compared with the more pressing problems of providing food, drinking water, health care, primary education and housing.

Keeping the special problems of the rural disabled in mind, and given the increased skepticism about the efficacy of institutional care, there has in the last decade or so, been a shift to community based rehabilitation (CBR) in India, as elsewhere in the developing world. CBR is a process of motivating and providing inputs-which could be medical, technical or social-to the community to take care of its disabled. To put it very simply, it is a system of enabling the rural disabled in their community and through their community.

While this movement saw the closure of many gigantic institutions in the West, in Tamil Nadu the interpretation of CBR has been twofold. The first has been the sensitizing and training in even simple, uneducated members of the community by specialists and professionals so that they can spread awareness, impart therapy and even construct and repair mobility appliances like crutches, calipers and wheelchairs. The community makes an ongoing effort to accept and integrate the disabled into the mainstream of daily life. The second aspect has been the reaching out into rural communities to identify areas which require technical assistance or help by referral to rehabilitation institutes.

Worth Trust in Katpadi, Vellore have been identified as the nodal agency for the Tamil Nadu Government's Ministry of Welfare and in many ways their experience has been an example, though in no way typical, of North Arcot Ambedkar district's venture into CBR.

Initially, Worth followed the institutional method. Village children affected by polio would be referred for admission into their transitional school, which had a hostel attached. The children would remain here for a couple of years undergoing physiotherapy and corrective surgery it necessary and be taught to take care of their physical needs independently. Once worth decided to take rehabilitation into the community so that many more people could benefit from their expertise ad resources, the focus of their activities shifted. They went into Gudiyattam, Senur and Kalinjur villages of North Arcot district, to spread awareness about polio and the importance of immunization, to dispel superstitions about the nature of disability, to suggest ways to prevent disability by better health monitoring and increased safety standards and to convince people that the disabled were capable of leading productive, useful and independent lives.

The awareness campaign included talks to women's groups, dialogue with respected members of the village community like school headmasters, teachers and village headmen. It was possible to coordinate with government agencies to ensure that immunization worked in tandem with growing awareness. In the field of community health, other NGO's in Tamil Nadu, like the Thirumalai Charitable Trust, Ranipet, have enthused village volunteers to employ media as diverse as therukoothu (street theatre), kalakshepam, villupattu (folk song) and puppet shows to communicate messages of gender equality, nutrition, breast-feeding and alcohol abuse to rural audiences. Awareness generated from within in the community rather than from outside, scores significantly in terms of credibility and acceptance and any of these media could be used effectively as a means of communication about disability.

The combined efforts of the government, of Worth and other NGO's and medical institutions reaching out into the community, saw a decline in the incidence of polio in several rural pockets of North Arcot district. Follow-up by social workers reveals that there has been more consistence use of calipers and more encouraging figures of disabled children rehabilitated by Worth have gone on to complete post-graduate degrees and found jobs while many of the rural disabled have completed technical training courses rub by Worth and have found employment as turners, machinists, draughtsmen and also in the field of electronics. Rehabilitation of the child is now a must shorter process, involving less expenditure and also must less time spent away from the family. After their children are fitted with calipers, the parents are trained how to given therapy at home and perform the stretching exercises necessary to prevent contractures. Children are admitted into the local village schools near their homes and are treated n CMC Hospital, Vellore, as outpatients.

Several panchayats have offered the premises of the local schools as centers where village women, trained by Worth therapists, provide physiotherapy to disabled children. The families of those children requiring corrective surgery are given the option of scheduling the surgery during the school's vacation time, which is also fortunately the slack time for agricultural work. The families can stay at Worth and be with the children during surgery. While Worth's focus was mainly on those suffering disability due to polio, they also identified people with other disabilities like cerebral palsy, hearing, speech and vision impairments and referred them to the concerned agencies for help.

While purists who favour the community-based approach prefer to create a situation where the community undetakes all aspects of rehabilitation, Worth and several other NGOs have realized that this is impractical and unrealistic. It is not always possible to find the rural community self-sufficient in the many resources required to help the disabled.

Take the example of Seenu, who is now learning tailoring in a vocational rehabilitation programme for the disabled run by CMC's Rehabilitation Institute and the Mary Vergese Trust. For two years, Seenu's family placed him as an apprentice to a tailor in his village in the hope that he would learn tailoring. Seenu's employer, however, had neither the inclination, the time, nor the skills required to train the young man properly and after two years Seenu was basically still stitching buttons and hooks. Encouraged by social workers from CMC, he accepted the offer of being housed temporarily in Vellore and is undergoing a structured programme which teaches him the basics of tailoring in a systematic way and will be helped to become self-employed by being given a load to purchase a sewing machine. Taking a more holistic view of the situation, part of his training also includes lessons in reading, writing and simple number work Wroth Trust also brings people from the rural areas to their center at Katpadi for technical training.

Most modern rehabilitation aids and mobility appliances are totally unsuitable for rural Indian conditions. Wheelchairs and tricycles are a legacy of a totally alien table-and-chair culture of the western world. Rural Tamil Nadu has a totally different social milieu as does most of rural India. It is quite literally, more down to earth, with sleeping, cooking and toilet facilities all being at floor level making the wheel chair user a total misfit in the home. The wheelchair user finds it not just difficult, but sometimes even dangerous to negotiate the sandy, uneven mud lanes in the villages independently. This is a problem that would not trouble a westerner, who has access to paved ad tarmaced roads. Calipers which require special fittings and have to be taken back to the point of manufacture for repairs have the built-in disadvantage that they may be discarded once they are broken.

Several NGOs are encouraging village artisans to improvise their own calipers, crutches ad wheelchairs from locally available materials like wood, cane, PVC pipes and cycle components. Some amount of technical expertise has to be imparted to ensure that the improvised aids do no harm to the disabled person. Law wheelboards and trolleys are as good at making the paraplegic mobile as the more sophisticated wheelchair. The Little Brothers of Jesus, a group of Belgian priests, live and work in the rural communities of Senji, Tamil Nadu. When the villagers, belonging to very poor, down-tradden communities, shared their anxiety about their disabled children with them, the Brothers directed them to CERTH in Pondicherry. A group of men nominated by the village community received training in constructing inexpensive PVC calipers in Pondicherry and returned to the village with the ability and confidence to make them for their disabled children. In Gudiyattam village, Worth encouraged a number of people to make crutches from locally available materials mainly wood.

Superstition and the consequent discrimination of the disabled needs to be eradicated if they are to lead useful lives. This is another area which NGOs can tackle effectively. Training key members of the community to spread awareness has a chain reaction and the best possible spillover effect of raising the standards not just of the disabled, but of the community as a whole. For instance, when parents of disabled children are motivated to educate their children, parents of the able-bodied also receive the message that education is vital.

While using a community-based approach to rehabilitation, Worth has found that the model successfully used in one community cannot be replicated in another, for each community has its own cultural protocol and social norms. In many rural communities, mental retardation is not viewed as a disability requiring special intervention because they place a high premium on physical work and the mentally handicapped person can still perform a full day's physically taxing agricultural labour. Again in some rural communities of North Arcot district, where the main source of livelihood is beedi-rolling, requiring mainly finger dexterity, locomotor disabilities of the lower limbs are viewed less seriously.

In some villages, any form of disability is considered as divine retribution and a signal of God's wrath with the erring family. In these cases there may be a great deal of resistance against rehabilitation which is construed as interference with what God has ordained. Some communities feel that the most 'humane' solution to disability is extermination of the baby immediately after birth while others believe in a policy of complete protection, strictly confining their disabled to the home in order to shied them from the ridicule of the community.

The approach used in each community must therefore be fresh, open-minded and sensitive. Preconceived notions and rigid equations that presume that there is only one correct solution to the problem of rehabilitating the rural disabled can sabotage the whole exercise of community-based rehabilitation.