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Live like it's heaven on earth

Vidya Sagar, an NGO working for the welfare of spastic children, believes in a holistic approach towards the problems of the disabled. Its founder Poonam Natarajan talks about her work and experiences...

WHEN ISHWAR Natarajan was born, little did his parents know how dramatically he was to change their lives and those of several others as well! Ishwar was a disabled child - he suffered from cerebral palsy.

For the Natarajans, shock and sorrow soon turned into courage and hope. It was in a small garage on Arcot Street in T. Nagar 18 years ago that the Chennai branch of the Spastics Society of India took root. From the garage that was home to three spastic children (Ishwar and two others), has grown Vidya Sagar on Ranjit Road in Kotturpuram, now home to more than 150 children, with a team of 130 staff comprising trainers, social workers and special educators, besides volunteers.

"Ishu changed my philosophy of life. He helped me find my vocation. Indeed, he gave both Nattu (as Natarajan was known to all) and me the emotional wherewithal and energy to work in this field," says Poonam Natarajan, chairperson, Vidya Sagar. Today, father and son are no more. Natarajan passed away suddenly four years ago following a massive heart attack. He was only 47. Ishwar died at the age of 22, in March 2001, from complications arising out of chest congestion. But he did not give up without a fight. He battled it out for 18 days at the hospital. He inspires not just me but everybody here," remarks Poonam.

She switched from academics to special education when she realised that her son was spastic. She worked with the Spastic Society of India in Mumbai and Delhi before setting up the Chennai branch in March 1985. However, she had her own goals. "I knew more than anything else that it was all about getting together a high-quality team comprising therapists, medical and social workers and, of course, parents. Taking care of spastic children is a labour-intensive exercise. My primary objective was to demystify disability and establish an Indian model of service. I made it a point to have a parents training project to enable parents understand what cerebral palsy is all about."

The past decade has seen several changes in the field of disability. This change, from a medical model of disability to the social model, means adapting to the environment and accepting the person for what he or she is. "Earlier spastic children were treated as beneficiaries of charity. Today, they acquire knowledge and skills and participate in social functions like ordinary citizens," she stresses.

She refers to the American Disabilities Act that is based on the social model where disabled people are encouraged to take part in social activity. According to her, the Western model is mechanical and segregated.

Vidya Sagar has pursued the social model. And the results are there for all to see. Several of the children study in regular neighbourhood schools and come everyday to the centre for physiotherapy. In fact, Poonam feels that education system itself needs to change.

Vidya Sagar has been working with tribal children too, through Teddy Trust, an NGO based in Thirumangalam in Madurai, and the Social Action Movement to try and re-work the regular school curriculum before the children join government schools.

Poonam's focus on training parents, as an individual tool in the disability movement, led her team to establish family and community-based rehabilitation models. Under family-based rehabilitation, the centre trains parents from slums, lower-middle class and upper middle-class homes. The Home Management Project helps parents learn skills to manage their children suffering from cerebral palsy, mental retardation, learning disabilities, developmental delay, physical disability and behavioural or emotional disorders. There is always a waiting list of 1,000 children wanting to enrol under this scheme.

Through the Community-based Rehabilitation Project, Vidya Sagar reaches out to more than 2,000 disabled children in Tamil Nadu. The Centre for Special Education, another Vidya Sagar model, looks after research and development and the day school. And complementing that model is the Adult Programme that takes care of independent living, non-formal education and job training, and the HRD Project that covers teachers and volunteer training.

Students from Vidya Sagar have joined mainstream colleges. Under the adult programme, the centre has helped a few find jobs. TThe centre has also formed three cooperatives for the members to make and sell eco-friendly products.

Vidya Sagar has also been addressing the needs of adults with disability, advocacy, inclusion and human rights. A winner of the Rotary's For the Sake of Honour Award (1998), the Inner Wheel's Woman of the Year Award (1999) and the Sadguru Gnanananda Award (2001), Poonam is not one to be bogged down by reverses, although she herself admits that even an issue like fund-raising can physically and mentally drain your energy if it has to. But she draws her strength from her children, her students who have done Vidya Sagar proud. Ummul Khair, Rajiv Rajan and Prabhakar, former students have found the ambience at the Centre so stimulating that they now work there, pushing for self-advocacy.

And it is from the examples set by children such as these that dreams take wing. Like the graphical lettering of the initials `V' and `S' in the Vidya Sagar logo, symbolising hope and the joy of living. Living like it's heaven on earth.


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