From the outside looking in

There are nearly 700 colonies of people living with leprosy in India and one of them is on the outskirts of Coimbatore, at Maruthamalai. Esther Elias listens to the stories of some of its inhabitants

February 04, 2013 06:57 pm | Updated February 06, 2013 01:06 pm IST

Government records say leprosy is officially eliminated but the stigma remains Photo: K. Gopinathan

Government records say leprosy is officially eliminated but the stigma remains Photo: K. Gopinathan

“God is love” reads the letterhead of Amarjothi Leprosy Nivaran Sangh (ALNS), a colony of 100 closely-packed homes housing 140 women and 160 men, 30 girls and 40 boys. On December 31, 2005, the National Leprosy Elimination Project declared the elimination of leprosy in India, as the prevalence rate was below one case for 10,000 people. Seven years later, reports say, India still bears half of the world’s leprosy burden and is home to many colonies of people living with leprosy, one of which is ALNS in Maruthamalai Adivaram (North).

What began with seven patients with leprosy and their kin 30-odd years ago is today a colony where over 70 patients live with their families. While most of them are near senior citizenship today, their life stories of exile, rejection and transfer from one Government rehabilitation home to the other, speak loud in memory.

To make a living

“Many of us came to Coimbatore to beg at the Maruthamalai temple. We’re from villages all over Tamil Nadu, some from Kerala and some as far as Delhi,” says A. Ganeshan (60), one of the earliest members of the Sangh and its President today. Most of them still make a living from alms received at the temple, while their able-bodied relatives work as domestic help, on construction sites, as electricians, plumbers and the like. “Some days we receive Rs.10; some days, Rs.100. But many people give us food on their way to the temple,” says C. Vembannan (72). “We can’t lift stones or carry things. What else can we do but beg?” asks Ganeshan, lifting up withered palms.

Leprosy is among the primary causes of physical disability and while the free availability of multi-drug therapy has considerably reined in leprosy’s spread, it has not cured the stigma associated with it. In the Sangh, none of the younger generation has a positive bacterial load and among the seniors, years of medication have garnered them negative, but it has not been in time to prevent deformity. For instance, 10 years ago, Vembannan developed a severe ulcer on his leg leading to its amputation. Today, he and many others walk on crutches. Their vital medication is provided by the Rotary Club of Coimbatore Metropolis every three months. When distance and disability keep them from frequent visits to the Government Hospital, M. Lakshmanan (48), a patient himself, tends to their ulcers and wounds with his self-taught first aid.

All community activities happen within an office room and extended shed built in the centre of the colony. Tiny homes extend around it up to the very foot of the hills. The shed is also a night shelter to families whose kuchcha houses flood in the rains. “When the rains are light, we manage to collect the water in plates but that’s impossible during heavy monsoon,” says Pechiamma (70). “The Government has given us a road leading to the colony, water and electricity. All we need are pattas for the land that our homes are built on so that our children may continue to live here. Only then can we also build sturdier homes,” says Ganeshan. All children in the Sangh currently study at a Government school in the vicinity while four of the young adults go to college.

The first of every month at the Sangh is collection day. Each member, excluding the children, contributes Rs. 2 to a collective which funds their transportation needs. Organisations in the city such as Assisi Snehalaya gift food and clothing on Deepavali and Christmas. These days are also special to men such as Vembannan, as they are the only times he visits his wife and children who continue to live in his hometown. Other’s stories, such as those of Madhinabibi and Abdul Ajiz, reflect more acceptance. They met and married at a rehabilitation home they were both housed in, and later moved to the Maruthamalai colony to make a life for their son who looks after them today.

Ganesh adds that there are stories of hope too. His wife Savithri, a non-leper, married him knowing fully well the extent of his leprosy. “She looks after me like a child,” he says.

Hope has also come from within the quarters themselves. Vice President of the Sangh, P. Mohan (60), for instance, had to leave his home when he was found positive and was forced to sell lottery tickets for food, despite having completed his SSLC. After changing multiple rehabilitation homes, he finally settled in Maruthamalai, learnt to speak fluent English and today handles the Sangh’s paperwork.

He says, “We believe what Gandhiji believed, that if you raise the life of one leprosy patient, you help raise the whole nation.”

The address of the Amarjothi Leprosy Nivaran Sangh is given below:

Amarjothi Leprosy Nivaran Sangh,

Door No 42, Maruthamalai Adivaram (North),

Coimbatore - 641046

Phone: 04222426018

The president of the sangh, A. Ganeshan, can be contacted at: 9842597525

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