Dear Editor,


CBR IN ACTION - SOME REFLECTIONS FROM THE SIRATHU PROJECT

Probably in the history of social services no other concept has become so popular in such a short time as community based rehabilitation (CBR). It began as an international movement with the growing realisation that institution based services cost prohibitively higher and do not integrate people with disability into the societal mainstream. CBR was regarded as a new approach in which families and communities are given the responsibility for the welfare of their members with disabilities. The success of CBR lies in encouraging people with disability, their families and the local community to join in this programme.

CBR is eminently appropriate in the Indian cultural setting, where social and community bonds are quite strong and deep rooted. The challenge is to harness the potential of these bonds for rehabilitation related social action programmes.

In developing countries like India, disability is largely a disease of poverty. The prevalence of disability, particularly polio and blindness, is at least four times more among those who are below the poverty line than those who are above it. The success of preventive and rehabilitative measures is largely dependent on the success of community development programmes. In this context, improving the quality of life of people with disabilities and their families would also benefit a large disadvantaged section of society. The emerging view today is that CBR programmes need to draw their resources from existing community development programmes and should get integrated with them. This is the ideological framework within which the Sirathu CBR project tool concrete shape. The programme aimed at greater participation of people with disability and their families. The major emphasis of this programme was on psycho-social, educational and vocational rehabilitation. The Sirathu CBR project went through many ups and downs in the last five years. It has taught us a great deal about social realities of Indian villages and about the possibilities of developing viable CBR programmes. This article documents our experiences and observations of the progress of this CBR programme.

The Sirathu CBR Project Area
The project area consists of five villages of the Sirathu tehsil, located at a distance of 70 kms from Allahabad city. Around a thousand families live in these villages. This is one of the most backward regions of Allahabad district. Barring a few high caste families, most of the inhabitants belong to lower castes, are illiterate, and work as agricultural labourers. There is only one primary health centre (PHC) for about 80 villages in the area. The villages have no telecommunication facilities and are inaccessible during the rainy season. There are few developmental activities, mostly undertaken by the Governmental agencies.

Two features of this region are worth noting, which in essence are common to most of the northern Indian villages. One is the high degree of caste consciousness. The village community is divided into higher castes on one side, and the backward and scheduled castes on the other. These two groups do not trust each other and compete for scarce resources. The century old dominance of high caste brahmins and thakurs is now being challenged by the other castes. This issue is politicised and the emerging caste consciousness is exploited by the local leaders to build their power base. The second feature is the prevailing ethos of dependency on external agencies for rehabilitation. The culture of dependency has been built up over the last forty to forty five years, which is sustained by the practice of `welfare' camps. In these camps, aids and appliances are distributed free of cost by government and non-government agencies. Self reliance is least appealing in this set up and any initiative to mobilise local resources is viewed with scepticism.

Entry stage
To explore the possibility of starting a programme, we met local people and held meetings. People from all strata of society, from different caste and religion groups, people with disability, local panchayath members and government officials attended these meetings. There was a good deal of participation in the deliberations by the social, spiritual and political leaders in the region. Many suggestions were put forward to tap local resources.

At a later stage, a small group of six to seven members was formed to develop programme activities and to share responsibilities. These were the people who were committed to activism, and included one woman and two persons with disability. The block pramukh (head) who was the elected representative of 115 villages in Sirathu tehsil was chosen to head this group. This man was an ex-convict, and a political heavyweight in the region. This fact posed a moral dilemma for many of us associated with the programme. Any community mobilisation for CBR with the active support of the block pramukh would strengthen his power base. The fact that the success of the CBR project with him at the helm of affairs would improve his social image, was unpalatable to many. On the other hand, the vast human and material resources at his disposal were important for the success of the project, and antagonising him in any way would have sealed the fate of the CBR programme. Even though we wanted him to be only a nominal head, he intended to play an active role. This situation is not unique to Sirathu, as in the states of eastern Uttar Pradesh and Bihar, as many as sixty percent of the block pramukhs have criminal cases pending against them in courts.

Because of the initial meetings and the air of expectation that they carried across, the project generated much interest and enthusiasm in the community. Many people offered their voluntary services. The meetings were well attended. People had the impression that the CBR project had large funding. One reason for the high expectations was the visit of our three guests from Canada. It created an impression that the project was part of a larger international programme and that large funds would be available for the local project. The rumours about large funding, in effect, became a major menace. It was difficult to clarify that no such funds were available and that the project had to rely on its own resources; this led to a good deal of suspicion and confusion. When it dawned on the people that the CBR project had virtually no funds and that they had to generate funds on their own, many became fence-sitters. The attendance at the meetings began to thin. We were finally left with a small but determined group of people who became the main strength of the project. The block pramukh, having realised that the project no longer attracted large crowds at meetings, lost interest and distanced himself from its activities.

Disability survey
There were no records in the villages of people with disability and their families. To document the baseline data, an initial survey was conducted with the help of local volunteers. The purpose of the survey was to identify persons with disability, the nature and causes of physical impairment, the needs and abilities of disabled persons, and their expectations from the project. The survey revealed that there were around three hundred families with at least one member with physical disability in these villages. The common causes of disability were post - polio residual paralysis, tuberculosis, blindness due to vitamin A deficiency, malnutrition and mal-union of fractures. More than eighty percent of the people with disability belonged to the lower socio-economic sections of society. A detailed record of 160 persons with disability was prepared during the survey.

Mobilisation stage
To salvage the programme, and to sustain the interest of the community, the local group decided to initiate activities which would provide immediate benefits without a big investment. Many Government schemes, such as travel concessions, scholarships, disability pension, bank loans for self employment, etc., were not accessible for those who needed them, because of bureaucratic hassles, corruption and callousness. A disability certificate, which only the Chief Medical Officer of the district, or the Heads of Departments of the Medical College in Allahabad city were authorised to issue, was needed to avail of any Government schemes. For poor villagers, it was nearly impossible to procure these certificates, and only five to six disabled people in these villages had the certificate.

Our first major activity was to organise three certificate camps, which brought the concerned medical officials to the village centre to issue the certificates. This helped more than 120 persons to get the certificate. This activity brought immediate benefits to the disabled persons and their families. For example, persons with disability got 75% concession in rail and bus travel, and their accompanying relative or friend was also entitled to some concession. Many people got small loans from banks to start their own businesses, which benefited both people with disability and their family members. The success of this venture may not have brought about substantial material change in the life conditions of the people, but it did serve to make people realise the benefits of collective action. For many subsequent meetings government officials, bank managers, doctors and others were invited to participate in dialogues with the community members about the implementation of various government schemes. This gave rise to hope and confidence among the people that community initiated intervention can succeed and make things happen.

Breaking mental barriers
Prejudices and negative attitudes are the major barriers to social integration and the process of rehabilitation. Such prejudices are functional, as they explain suffering and justify inaction. People often shake their heads and ask " How can people with disability do anything?" To change the attitudes of people, focus group discussions were held. The professed objective of such discussions was to identify areas of self employment in which people with disability could do very well if they were given a loan. The whole exercise was meant to shift the community's mental set from disabilities to abilities. Everyone, including the persons with disability and their family members, were encouraged to join in the discussion. At the end, a few selected persons with disability were provided small loans. The local people provided them with the other necessary support for the setting up of small businesses. Another goal of this activity was to create some successful models and to inspire others to follow suit. This plan was not very successful as we could not muster sufficient financial resources for the self employment schemes. However, it did open up a public debate about what people with disability could do, rather than what they could not.

New initiatives
With this ground work and expanding support base, a local NGO named Sambhavana, meaning 'possibility', was formally constituted. A local office bearer of Sambhavana offered his house to run two activities : an integrated school and a vocational training centre.

It had been realised for a long time that children with major disabilities had no access to any education in that region. With meagre resources, an integrated school was started in August 1994 with one teacher and 25 children, of whom 15 had some physical disability. The children were taught basic reading and writing skills, and arithmetic. For most of the children with disability, this was their first experience of formal schooling. Free transport was arranged for severely handicapped children. The school provided a forum for community members, particularly the parents of the children, to come together to discuss and plan various activities of Sambhavana. In April 1995, the school complex was renovated, essential furniture was procured and another teacher was appointed. Even though the school could not get specially trained teachers and teaching aids for the severely disabled children, the enrolment went up to 55 children, half of whom were disabled.

Another major milestone was the starting of the vocational training centre for the school children and their families. After long deliberations and market surveys, the group decided to start two types of skills training : incense making and bakery products. There was a good local market for these products. The bakery was more successful. Its products stared selling and the centre began to make a profit. With the hope of making Sambhavana self-reliant, greater attention and efforts were concentrated on the bakery. The school attendance improved, and the families of the children began to get more involved in the activities. The income generation training programme caught the imagination of the village community and their participation in the project began to increase. There were all indications that our CBR programme was becoming a success story.

The crisis
The success was short-lived. In fact, success itself created new problems. It attracted the attention of those who saw an opportunity to expand their power base by joining Sambhavana and sharing its success. These were influential local people, many of whom were more interested in the commercial success of the vocational training centre. There were conflicts, friction, and confrontations, influencing decision making and programme implementation. The priorities also began to change. During one of our visits, we observed with dismay that the integrated school was shifted to a side room from the main hall, which was taken over by the bakery. The training of people with disability in the bakery business was assuming secondary importance in the preoccupation with running the bakery profitably.

And then tragedy struck. A key person from the local CBR group and the secretary of Sambhavana met with a serious road accident and was confined to bed. His absence exacerbated the crisis in the CBR group to such an extent that the bakery could no longer operate. The atmosphere was getting vitiated, and more energy was spent in managing different interest groups at the expense of the programme activities. At one stage we had to take the painful decision to suspend all CBR activities. The prevailing opinion was to initiate a debate on how to make the Sirathu project community based in the real sense and to save it from being taken over by those with vested interest. Lack of trained CBR workers was a major short - coming. We decided to send local volunteers for CBR training and to try and revive the project on their return. The donors were requested to withhold support until the programme was revived.

A Retrospect
Looking back, the Sirathu project did achieve moderate success despite the many constraints and other compulsions. It succeeded in creating an environment of hope and expectation that things can change for the better. Our meetings and discussions aroused the interest of the village people in disability issues. Another encouraging part was that people with disability actively participated in all the deliberations and activities. The programme had a ripple effect in changing many misconceptions and prejudices about 'what people with disability can do'. This change was evident from the increased enrolment of children with physical impairment in different schools of the region. An unintended, but partially related consequence of this project was the 150% increase in immunisation rate in four years.

The Sirathu project has thrown up many issues for the protagonists of the CBR approach. Firstly, it is presumptuous to imagine that village communities are cohesive and motivated. In reality they are often faction-ridden, with different interest groups operating at cross purposes. There are undercurrents of suspicion, mistrust and personal rivalries. The success of the Sirathu CBR project was in bringing together diverse groups to work for a common cause. The task was formidable. CBR programmes are also highly vulnerable to local influences. Experience shows that rehabilitation programmes succeed where the local leadership is strong and has a high moral standing.

Secondly, a major challenge for a CBR programme is to bring about attitudinal change. In a culture where suffering is accepted as karma (fate), where people below subsistence levels have learned to be helpless, any talk of CBR is a distant dream. One has to give serious consideration to see how CBR can work in a community which is oppressed and exploited for centuries. The rehabilitation work in such a milieu cannot be divorced from the larger concerns of socio-economic development.

Thirdly, in a resource starved underdeveloped village, only a low cost CBR programme is viable. The dictum is self-sustenance rather than self-reliance. It is tragic that the many government schemes for disabled people remain out of reach for those who require them. Success of community efforts are to be assessed in terms of the revival of these defunct schemes. For this, the communities should be motivated to work as a pressure group to claim the benefits for their disabled members and their families.

The concept and practice of CBR has come a long way in India. With the initial euphoria subsiding, we now have a better appreciation of the problems and prospects of CBR in action. The vast experience that we have accumulated over the years should help us in meeting the challenges that are unique to the Indian social reality. For the success of CBR in India, it is crucial that we learn from successes as well as from failure stories.

ASIA PACIFIC DISABILITY REHABILITATION JOURNAL (VOL.9, NO.1, 1998)

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