As a pilot project of the APRPRP, a Community Based Disability Intervention has been introduced in Mahabubnagar District, one of the poorest in Andhra Pradesh. Since 1984 the Commitments team has been working in Mahabubnagar, in community development, poverty reduction, and disability rights. The goal is to empower vulnerable groups by “building participatory and self-managed institutions and developing sustainable livelihood capacities.”

One of the APRPRP approaches to poverty reduction is through the formation and assistance of “sangams” (common interest self help groups) among the most disadvantaged groups (women, Dalits, landless peasants, disabled persons, etc.) at the village level. Through the sangam, people can work together to improve their situation, both socially and economically. They can define their common needs and biggest barriers, and collectively take problem-solving action including income-generating activities.

These “from the bottom up” activities are supplemented by the “from the top down”: APRPRP personnel who try to win cooperation and support from officials at the village, mandal, district, and state level, in matters of schooling, safety, employment, fair wages (or at least legal minimum wages), access to legal entitlements, and basic human rights.

History of ‘Vikalangula Sangams’

In 1999, in the small village of Kosgi, Commitments opened a modest Project Office, which doubles as a community rehabilitation and training center. In 6 mandals, the team has helped to start 70 “Vikalangula Sangams” (self-help groups of disabled persons). To help organize and facilitate the initiative, Commitments has trained several “Community Coordinators" (CCs), as well as 20 village activists and social workers, mostly disabled. I was impressed by the dedication and ability of this group. The fact that 3/4 of them are disabled contributes to their understanding of key issues and commitment to empowerment of other disabled persons.

In this, Commitments is to be applauded. In other programs, such leadership by disabled persons is less than common. Even in the (relatively few) Community Based Rehabilitation (CBR) programs in India, seldom do disabled persons play leading roles in program implementation. If this Commitments model of having programs for disabled persons staffed by disabled persons is successfully scaled up within the statewide APRPRP program—as is the plan—it will be a breakthrough of far-reaching significance.

Visits to ‘Disability Sangams’

The program staff (who love acronyms) refer to the Vikalangula Sangams as DCIGs: short for Disability-oriented Common Interest Groups. In smaller villages there is often a single Disability Sangam with 15 to 20 members. At meetings, disabled children and mentally handicapped persons are usually accompany by their parents. (However, I soon discovered, some of the older children play important leadership roles themselves).

Reaching Across Barriers. In the Disability Sangams we visited, members made a conscious effort to reach out and include all disabled persons in the village, whatever their disability or social status. In terms of breaking down entrenched barriers this was a big step forward. Because of their common identity as “disabled persons,” sangam members’ are more willing to reach out to others across the traditional walls of class, caste, gender, and even generation (adults to children). Persons who would otherwise never have spoken to each other and certainly not on an equal level—were beginning to do so. And by doing so, they discover the other things they had in common, apart from disability. In terms of transcending entrenched social barriers, the sangams are real bridge builders.

Fighting for Entitlements. What impressed me most on visiting the sangams was people’s energy and enthusiasm in trying to collectively improve their situation. Nearly all the groups have been making an organized demand for their legal certification and entitlements (which has proved an uphill battle). They have worked to get disabled children into schools (which is their legal right, but not easy). And with the help of Commitments, they are striving to get necessary medical care, surgery, and assistive devices they need.

Winning Respect in the Community. In all the Disability Sangams we visited, members said that one of their biggest accomplishments so far has been their campaign to be treated with respect. Awareness raising activities, including educational street theatre, have reportedly had an impact on changing how people see disability.

“Now people don’t call us ‘the lame boy’ or ‘the blind girl’ but address us by our real names,” children said proudly.

When I heard this, from my own childhood I recalled how important “names” can be. I explained to the group that as a boy (because I limped due to a hereditary muscular atrophy) my classmates nicknamed me “Rickets.” I still cringe at the memory! Alas, at that time and place there was no Vikalangula Sangam to provide group support or raise community awareness.

‘Neighborhood Houses’

Many Disability Sangams were eager to start their own “neighborhood house.” They envisioned this as a place where disabled people could meet and exchange ideas, organize activities, master new skills, assist one another with therapy, and learn from visiting rehab professionals. Most important, they saw the Neighborhood House as a place where disabled people can play a visible, pro-active role in the community.

Some of the sangams have applied to Commitments for financial help in setting up a neighborhood house. Two groups were so eager that they have rented a building or acquired donated land, even before Commitments had responded to their request.

Visiting Gundmal: Déjà vu—PROJIMO Makes it to India

Our first visit was to the Aruna Vikalangula Sangam in Gundmal village. The Sangam President is a 16-year-old schoolboy who has one leg withered by polio. Most of the sangam’s members are, in fact, school-aged children. The rest are adults of every age, with diverse disabilities, mostly physical.

The young Gundmal group told us excitedly about their new “Neighborhood Rehabilitation House,” an old building they were loaned by the village panchyat (community council) and are creatively adapting. They were obviously proud of it and were eager to take us there. Our visit coordinator said we were pressed for time, but I begged to see the House, and he agreed.

As we approached the Neighborhood House, I had a sudden feeling of déjà vu. In front of the old building, and inside, the youths had built a variety of rustic playground and rehabilitation equipment. These included parallel bars made from bamboo poles and forked sticks, a simple pressed-earth ramp for easy access, a swing made with an old car tire, a large barrel padded with foam rubber for physical therapy, and an arm-exercise device made with a wheelchair wheel mounted on a wall. All looked disconcertingly familiar.

 

 

“Where did you get the ideas to make all this local, low-cost equipment?” I asked.

“From a book somebody gave us called Village Disabled Children,” answered one of the disabled youths. When the head of Commitments told him I was the author of the book (actually titled Disabled Village Children), his jaw fell open with surprise. From that moment on the whole group welcomed me like an old friend.

Visiting Hakeempet: Exploring Alternatives to School

The next day we visited the Sudha Chandran Vikalangula Sangam in Hakeempet village. Here the dynamics were quite different. Most of the children in the sangam were developmentally delayed. Suggested explanations for this high incidence of mental retardation ranged from consanguineous marriages (inbreeding), to pesticides or other chemical contaminants, to the prevalence of premature birth due to the high rates of malnutrition and anemia of pregnant women. (In rural India rates of anemia in women of child bearing age run as high as 90%.)

In our discussion, it became clear that many of these mentally slow children suffered from harsh rejection and exclusion, sometimes even within their own families.

For example, one 11-year-old mildly retarded girl at the meeting was very withdrawn and morose (and very thin). Since her mother had died 3 years before, she lived with her father, who was also mentally a bit slow. He brought her to the sangam meetings only because the group urged him to do so. The girl could talk, but her father would not let her speak for herself. He said he had not senther to school or sought any kind of help for her because she was “totally useless.”

Other parents had better reasons for not sending their children to school. For mentally slow children, they said, schooling was cruel. Mothers said they had tried to get their children into the local primary school, but with frustrating results. Even when the children were accepted, teachers had little patience with them. They scolded or humiliated them in front of the other children, who learned similar behavior from their teachers.

At the Sangam meeting there was an angry looking mildly retarded 13 year old boy named Ram, who sat on the floor all hunched into a ball, scowling. Ram’s mother said she had tried several times to place him in school. But after a few days he had always run away. Now the boy flatly refused to go, even when she threatened to beat him.

 

This led to an eye-opening discussion as to whether school was always the best option for the slow learning child, especially if teachers and other children fail to treat them with respect or help them learn in a supportive way at their own pace.

I reflected on our experience in rural Mexico. Sometimes a mentally retarded child is happier, learns more, and feels he or she is making a greater contribution by helping his or her parents in the farm work, or by doing a simple, if repetitive job.

We concluded that there is need for flexibility and common sense, both in questions of schooling, and of “child labor.” To simply say, “Schooling is good,” and “Child labor is bad” is simplistic. We should ask ourselves, “Where does the the child seem happiest, learn most, and best develop his or her potential?'

Whether, under the circumstances, the parents in Hakeempet should try to get their mentally retarded children into the school, remained unclear. What was very clear was that these children needed an opportunity to play and interact and learn with other children.

We told the group about the rustic “Playground for All Children” at PROJIMO in rural Mexico, and about the play and rehab equipment that the disabled children had made at the sangam in Gundmal. Pulling out a copy of Nothing About Us Without Us, I showed the sangam members drawings of easy-to-make playground equipment. The grown-ups showed polite interest. But the children were fascinated with the idea, and with the book. Two young boys poured over it for half an hour. One was Ram the angry retarded boy—who suddenly came to life. When the Sangam leader asked Ram if he would like to help build such a playground with other children, he scowled silently for a moment. Then with a big grin he nodded, Yes!

 

Integrating Disabled Kids Through ‘Child-to-Child’

One of the biggest benefits of schooling potentially, is that it gets children in a community working and playing together, as companions and even as equals. But this potential is not always met—and it is here that Child-to-Child can make a difference. Whether in school or out of school, it can help a group of children reach out, include, and assist “the child who is different.”

The Child-to-Child methodology started in the International Year of the Child (1979) and is now practiced in over 70 countries. It began with the idea of teaching school-aged children to help meet the health and development needs of their baby brothers and sisters. (For example, the importance of giving lots of fluid to an infant with diarrhea.) But Child-to-Child has evolved. Now it includes activities and games to sensitize children to relate in a friendly and enabling ways to children with special needs. (Our books Disabled Village Children and Nothing About Us Without Us both have sections on Child-to-Child disability-related activities. Both books are available in full on our web site (www.healthwrights.org)

In Gundmal, Hakeempet, and other sangams, whenever we discussed Child-to-Child, there was a lot of interest, especially among the children. I am happy to report that Commitments has followed up on this interest. In recent months, B. Venkatesh, who has a lot of experience with Child-to-Child, con-ducted Child-to-Child training workshops for prospective facilitators from different mandals. Fittingly, the first workshop was held in Gundmal, where the disabled children in the Aruna Sangam played a central role. Leadership by the children themselves is a key to success of Child-to-Child.

Possibility of Disability Sangams in Managing Community Based Rehabilitation

On our visits to the sangams, we encountered a strong felt need for Community Based Rehabilitation (CBR). Currently families have to travel far and spend lots for even the most basic rehabilitation services or assistive devices. To make things worse, private doctors and traditional healers often exploit poor families by prescribing medicines or herbal remedies for mental retardation, cerebral palsy, and other disabilities that require developmental rather than curative measures. (See photos, page 4)

Members of various disability sangams were eager to start a CBR program in their village. In our discussions , the idea arose that one or two sangam members could be trained as CBR workers, and the rest of the sangam could assist them. The necessary training and back-up, and referrals could be arranged by Commitments, SERC and the State government. The neighborhood houses could be used as a CBR center. Already the disabled youngsters in the Aruna Sangam, on their own initiative, were moving in this direction.

The leadership of Commitments and SERC was already thinking along similar lines. Disability sangams could become involved in CBR activities, first in selected villages where interest and potential were high. They might begin with informal peer counseling. (For example, a mother with years of experience assisting her disabled child could advise and assist less experienced mothers.) CBR training could be incremental. Through short workshops, trainees (chosen for their interest, ability and compassion) could be taught basic skills. Through hands-on apprenticeship, they master aspects of physical rehabilitation. They could employ Child-to-Child activities to help special needs children gain entry into schools. They could lead activities to promote community respect and opportunities. And they could organize prevention campaigns.

Development of CBR activities at the village level is one of the program goals. However, in the Mahabubnager project, rehabilitation services are still largely provided by visiting professionals. While a good back-up and referral system is essential for effective CBR, much more needs to be done to train local CBR workers at the village level. And if these CBR workers are disabled persons, their commitment, empathy and quality of work is likely to be better.

In some of the disability sangams, such as in Gundmal, there are bright young disabled persons who would jump at the chance to become village CBR workers, and would likely do an excellent job. Some might go on to become leaders for human rights in their communities. Their contribution would help win appreciation and respect for disabled persons in general.

(For examples of how this empowering process has evolved in Mexico and elsewhere, see the books, Disabled Village Children and Nothing About Us Without Us.)