At first, Sundar is a little shy. His shirt is half untucked and he shuffles nervously, refusing initially to sit on the chair in the school playground. But ask the 13-year-old about his academic scores and he perks up instantly. Surrounded by a gaggle of schoolmates, Sundar leans forward on the chair and rattles off his marks—“51 (out of 60) in Science”, “44 in Tamil”. The weather is perfect, the children have just had a lunch of rice, sambar, rasam and a boiled egg, and they run off to play.
When Sundar’s mother Shanthi was his age, she had left her home to make a living sweeping the floor at a hospital where she was being simultaneously treated. She had been diagnosed with leprosy at at the age of eight. “I had to leave home. Who would marry my siblings if I stayed?” she asks. She had stopped school at Class V. Today, the family—Shanthi and three of seven children—lives behind the school in the St. John’s Leprosy Patients Rehabilitation Association Colony, set up nearly 20 years ago. This is one of around 40 such colonies in Tamil Nadu.
Gnanodaya School—a long, yellow, L-shaped building—in Venkatapuram village, 45 km south of Chennai, with a current strength of 151, has educated two generations of children from this colony. These children have, without the stigma that their families have historically faced, studied till Class X here. Last month, the board exam results were out and the highest was an impressive 426 out of 500 scored by two students, both from colonies of people living with leprosy.
The school was established in the mid-1990s when DIK, a German foundation, along with several people with leprosy living in Chennai, decided to build a self-sustaining colony that included an educational centre. Many of these people had left their homes and villages, with no means of supporting themselves, and few resources to get their children an education, says Padma Venkatraman, chairperson of the school, now run by Gnanodaya Rehabilitation Association.
It wasn’t an easy proposition. “Back then, the stigma around leprosy was huge and the local community here did not want people with the disease coming into their locality,” says Venkataraman. But the patients and those helping them persisted. Teachers were hard to find, due to the centre’s remote location. Eventually, land was bought and the school and colony set up. Students were invited from other such colonies in the State.
Acceptance and trust
Initially, residents of the Venkatapuram village would not enrol their children in the school thinking they would contract the disease. But, slowly, says Venkataraman, acceptance and trust grew, and children from the village began to join. Almost two decades on, there are nearly as many students from the village as there are from the leprosy colonies—and this is key in promoting integration right from childhood.
At the school, everything is free: the children pay no fees and are provided with lunch (the 60 residential students get all meals) as well as books, uniforms and stationery. The school also promotes extra-curricular activities and sports: there’s volleyball, throw-ball, kabaddi, kho kho and chess, besides dancing, drama and music classes. After school, while some go on to finish their higher secondary studies, others opt for vocational training, also supported by the Association. This year, four students have enrolled in nursing courses and two have joined a Polytechnic. D. Nigalya, who completed Class X from the school in 2014, says she particularly enjoyed playing football. Nigalya is now hoping to get into a nursing course.
At the colony, Sundar’s mother Shanthi, now 56, wearing a bead necklace, her curly hair pulled back and bright eyes behind glasses, says her vision is failing. The fingers on both her hands are curled up and she finds it difficult to use them.
Every year, leprosy affects around 1.25 lakh people in the country—home to 60% of the world’s leprosy patients. The bacterial disease impacts the nerves and extremities and the eyes and, if left untreated, can lead to severe disabilities. It can be treated with multi-drug therapy, a combination of antibiotics for durations ranging from six months to two years, and the cure rates are high, says Vineeta Shanker, executive director, Sasakawa-India Leprosy Foundation. Within 24 hours of treatment, patients become non-infective. Now, a vaccine developed in India is to be piloted in two States.
It is afternoon now and the colony is quiet. A large tree at its entrance shades a stone bench. Some 30 patients of leprosy and their families live in the 50 houses spread on the four-acre plot, which also has a temple, a church and a community hall. While the stigma surrounding the disease has reduced to some extent, layers of discrimination still exist—within society and even within the legal framework.
Forging new lives
But it’s not like it was before, says G. Sevagaperumal, one of the members of the St. Johns’ Rehabilitation Association, whose father is also a patient living in the colony.
From resisting the very idea of the colony being set up to frequent interactions—the residents of Venkatapuram now often visit the colony—things have changed for the better. Many children of patients have moved out, forging new lives for themselves. For patients though, the colony is both home and perhaps a sanctuary, with a dependable support system, donors, visiting doctors—and of course a school that helps secure the future of their children.
It is 4.25 p.m., and the school bell is about to ring. Sundar and the other children from the colony will soon be back home. And as on many other evenings, children from the village may join them in play.
*Some names changed to protect privacy.