Deepam

A healing presence creates a haven for disabled children

Deepam, the project for disabled children started out small in 1992 in an open space in the village of Kuilapalayam . Deepam in Tamil refers to the flame of an oil lamp, and true to its name, it has indeed brought light into the lives of many disabled children and youth from about 20 villages around Auroville.
The project was started by Franca, Marika and Appie as a playground for disabled children from Kuilapalayam who came in thrice a week. “We had a little structure under the tamarind grove next to the Auroville bakery,” recollects Angelika, an occupational therapist from Germany who joined the project three weeks after its opening. “I, along with Karpagam, a lady from Bommaiyarpalayam village who learned on the job, continued the work at Deepam. And it's interesting how Karpagam without any formal training or education but with the gift of working with children, has become an irreplaceable part of the team.”
Besides these two forces behind Deepam, many helpers from within Auroville and outside passed through the portals of Deepam. “Only in the last five years has a bigger team slowly built up to what we have now,” says Angelika. “There are two Aurovilians in charge and four employees with a qualification or training, as well as a cleaning amma and a driver. In 1995, thanks to donations, Deepam was able to move into a well-equipped and specially designed therapy room in the children's nursing home attached to the Auroville Health Centre.” Meanwhile it also stepped out from under the Auroville Health Centre umbrella and in April 2003 became an independent unit under the Auroville Foundation. Snugly ensconced in a far corner of the Health Centre premises, Deepam is housed in an elegant structure with an eclectic but harmonious blend of Tamil and European architectural elements.
From the start, the work at Deepam has been supported from funds provided by Angelika's personal network of family and friends from Germany and Switzerland . “We now have about 300 people to whom we regularly send informative letters about our work. I would say around 100 supporters are contributing regularly, some of them since 12 years now,” she says. She admits that the fundraising for the growth of Deepam takes up a lot of her time. “Last year a small group of my close friends in Germany started the ‘Deepam friendship circle' with the aim to help our project securing its funds, and this has considerably grown.”
Two months ago, with additional contributions from its donors, Deepam was finally able to finish a much-delayed building expansion. Also recently, with financial support from a small German organisation DIK (Deutsch Indisches Kinderhilfswerk), it purchased a 15 seat van. “Now every day we bring children from far-out villages for treatment and daycare,” says Angelika. She mentions how the van has also made it possible for the children to go on special field trips or to be transported to the swimming pool or the beach. “Did you know we have children who live in the seaside villages but have never seen the beach?” she asks incredulously.
“Children with disabilities have never had it easy especially when they come from poor families,” says Selvi a Tamil Aurovilian who works in tandem with Angelika in running Deepam. Selvi is a qualified nurse with special training in speech therapy. She explains how most of the children come from families facing difficult social circumstances such as poverty, unemployment, alcohol abuse and illiteracy. Also there is no form of social security for old age, accidents or illnesses. So it becomes a big burden for the family to take care of a disabled child. “In the village, people do not know how to help these children. Mostly they are locked up in their homes when the adults go to work, or are left to wander the streets unsupervised.”
Deepam serves about 100 children, six days of the week. They come at least twice a week for therapy, learning and play, and social interaction. Angelika elaborates. “Our statistics show that we know 100 patients in the surrounding villages with a disability. Some need very little follow up. Presently we are following about 34 of them intensively.” She stressed that quality work with disabled patients is both time-consuming and staff intensive. “16 children and youth benefit from our day-care programme, the smaller children come for a minimum twice a week for their therapies, and some come daily.” For each child an individual programme is designed according to its age and disability. Besides physiotherapy, massage, occupational and speech therapy, Deepam also combines activities with handicrafts, play and fun in a group setting. “Home visits to serve both children and grown-ups are also done in villages which our van can't reach daily,” she continues, “though it becomes obvious that the children who can come to our centre make better progress.”
Deepam strongly advocates family participation. “We encourage the parents and other care givers like grandparents to do some of the physiotherapy on their child.” This involvement, she explains, helps break down misconceptions about disabilities and empowers these adults to be better care-givers. Little breakthroughs through family attitudes provide much encouragement to the team. “Children get referred to us usually through the doctors of the Health Centre or through the field workers,” says Angelika, “though most of the cases actually come through other channels like parents, neighbours, and teachers.” Not all cases of referral involve permanently disabled children. “We had a 2 year old girl Vijaya Lakshmi from the nearby village who was sent to us for physiotherapy as she could not walk. She was diagnosed with severe malnutrition, along with anaemia and intestinal parasites. So it was no wonder she had not reached the normal milestones of development expected of a child of her age.” The team at Deepam insisted that the mother bring her daughter twice daily to the centre for a healthy snack. “This way we were able to make sure that she got nourishing food, took her medicines and supplements regularly, and received stimulation through play and movement. After a few weeks here, her cheeks filled out and soon she has started to walk and didn't need our help!”
However, most of the children referred to Deepam do not enjoy such dramatic success. “We mostly see children with birth disorders – cerebral palsy, hemiplegia, muscular dystrophy, polio, mental deficiencies and speech or hearing impairments,” says Angelika. A purely physical impairment without mental deficiency is treated with rehabilitation and appropriate appliances like hearing aids, callipers, wheel chairs and/or splints. “And some of these children are able to integrate into regular schools,” she adds, showing a 10 year old photograph of a little boy on callipers. “This is Azhagapan and he was affected by polio. We first saw him at our playground. For many years he received physiotherapy and callipers from us. He was at New Creation and at After School in Auroville. As he is an intelligent boy other people stepped in and helped him with further education. Now we hear that he is in high school.
Not all stories have fairy-tale endings. “We also receive individuals who are mentally-retarded,” says Angelika, “and it is very challenging to help them become independent.” She points out that a few of them who came at the very beginning 12 years ago are still at Deepam, now as adults. While Deepam is primarily a facility to help children with disabilities, it has been unable to turn away older individuals who show up. “For many of them this is the only place where they feel welcome,” explains Angelika. “Originally we thought it should be possible to find some work for the older ones in an Auroville workshop after a few years of training. But this was a miscalculation because most of the mentally-retarded are too weak in their cognitive abilities. For example, we once decided to have them assemble paper bags for the Pour Tous vegetable counter. All they had to do was fold newspaper sheets in a certain way and stick sections together. Seems easy for us, but only two were able to fold the sheets correctly. We even broke down the process into small steps but that too didn't work. In the end, the bags had to be folded by our staff so we gave up the experiment.”

Deepam also faces the difficulty of finding qualified and dedicated professionals who want to work in Auroville. “It is not easy,” says Angelika. “But those who do come here – we have a physiotherapist and a Multipurpose Rehabilitation technician from Pondy – are very sincere and love the work.” She explains how it takes them a while to adapt to the more Western style of teamwork and to work using different methods from the usual techniques in India . She explains, “Occasionally we have experts in the field who visit Auroville and stop by, offering us their services and training. Most recently, we had a specialist from Brazil who introduced us to a concept called ‘Neurofunctional Reorganisation'. It is ideal to use with most of the disabled children in our working environment.” Such experiences at Deepam promotes a close-knit feel to the team. Says Selvi, “With all these opportunities for professional training and advancement, we find ourselves learning and developing together, and that gives a wonderful feeling.”
It is tea-time at Deepam. All have gathered in the low-pillared courtyard by the recently built tea-kitchen. The staff appear relaxed. The low granite benches are spilling over with children and youngsters. Two little girls, one adjusting her hearing aid and the other chattering excitedly, skip around the fig-laden banyan tree. The stone Ganesh beneath, with a red hibiscus at his feet, surveys the scene. The emerald lawn is lush from last night's rain, and the grey pebbled paths appear freshly-washed. Deepam is a micorcosm, a parrallel world of community, warm and loving.