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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: Life on the Margins

The Goodwill Ambassador visits self-settled leprosy colonies in India’s Odisha, Uttarkhand and Bihar states to learn more about the challenges their residents face.


With a man exiled from his village due to leprosy

From Raipur, the capital of Chhattisgarh in central India, it is a six-hour drive east to Balangir in neighboring Odisha. There I was met by Umesh Nayak, the state leader of the Association of People Affected by Leprosy, who had arranged for me to visit a leprosy colony in the city

Leaving my hotel the next morning, I saw people from Kallaripalli colony begging in the street. An elderly woman told me she made between Rs.30 to 50 a day. Given that the monthly pension for people affected by leprosy in Odisha is Rs.300, she could make two to three times that amount by begging for 20 days. Clearly there is a need to increase the pension. In Bihar, the equivalent pension is Rs.1,500 a month — enough so that this lady would not have to beg for a living.

I walked with Umesh to the colony. It was just 15 minutes away, but under the scorching sun it seemed much further. At the entrance, women were drawing water from a well. Residents, young and old, gathered around in greeting.

Their homes were rudimentary: brick walls with roofs of black sheeting held down by stones. The windows were very small and the temperature inside must have been approaching 50 degrees Centigrade. Although it was midday, the rooms were very dark.

I spoke with a woman whose roof had collapsed just two weeks earlier because of a buildup of rainwater. She had been at home at the time and the experience had left her traumatized.

I also met a young couple. The husband, who was not from colony originally, told me he could not get work because his wife was a person affected by leprosy. It is a sad fact that such discrimination still exists; at the same time, their marriage shows how the barriers of prejudice are being broken.

The next morning I went to see members of the colony begging near a Hindu temple. Although it was still only 9 a.m., it was already extremely hot. The best positions on the approach to the temple were taken by other beggars, with people from the colony on the other side of the road. Even in the world of begging, there is discrimination. Krishna, the leader of the colony, told me they took no pleasure in asking people for money. “We do this because we have to live,” he said.

Ganga Mata Kusht Ashram: colony leader Keshav Choudhary is third from right

My last stop in Odisha was a village about 90 minutes’ drive from Balangir. Nearby lived a man who had been exiled from the village after developing leprosy. After greeting the village head, I was taken by Umesh to the man’s home. The villagers appeared put out by our sudden arrival and the purpose of our visit, but some of them followed us to the man’s house anyway.

It was a simple dwelling of mud walls and a straw roof. From the gloomy interior emerged a white-haired man who appeared all skin and bones. He told me he had been living there for the past 30 years and had built the house himself. His wife still lived in the village, but he chose to remain by himself so as not to be a nuisance to her and the other residents.

The husband could not get work because his wife was a person affected by leprosy.

Sheetal started this chaat stall with microfinancing from Sasakawa-India Leprosy Foundation.

The man told me his wife would sometimes visit and bring water and vegetables, but would not touch him. He has two sons, and grandchildren too, but they rarely visit. In the 30 years since he left the village, no one has held his hand, he said.

Some people in the village apparently thought he was being punished by God. I told them that leprosy was just a disease and was no cause to ostracize someone. But I fear there are still too many people like this man who are living a life apart because of leprosy.

Returning to Delhi, I travelled five hours by road to Haridwar in Uttarkhand state, which was created in 2000 from parts of Uttar Pradesh. The state is home to the source of the Ganges River, and thus attracts many Hindu pilgrims.

With residents of Ganga Mata Kusht Ashram is by the banks of the Ganges. It consists of a collection of simple dwellings made of corrugated metal walls and plastic sheeting. On arrival, I was greeted by colony leader Keshav Choudhary, a charismatic man swathed in orange.

People affected by leprosy receive a pension of Rs.1,000 in this state, so the colony residents have more security than their counterparts in Odisha. Among them was Santosh Gupta, 48. Originally from Kolkata, where he knew Mother Teresa, he has four children and eight grandchildren, all of whom are going to school.

I spoke with one of the younger residents, 10-year-old Bhim, who had just learned to write his name. As we talked, his older brother Vikash, 18, returned from class. A handsome youth, he said he doesn’t experience any discrimination from living in the colony. He told me his dream is to attend technical college.

The colony attracts people from many parts of the country; more would like to live here but there is not enough land to accommodate them.

The last leg of my journey took me to Bihar. In Patna, the state capital, I visited Prem Nagar leprosy colony, adjacent to a bridge construction project. Gravel and other building materials were lying about and the air was full of dust. The colony dates back more than 60 years, but two years ago it was forced to move from its original location to make way for the bridge. According to the patriarch of the colony, 75-year-old Saudagar, the new site was swampland. Money had to be spent on landfill, leaving little left over for housing.

I met 50-year-old Sheetal. He started a business with micro financing from Sasakawa-India Leprosy Foundation. He sells savory, deep-fried snacks filled with spiced mashed potato and other ingredients from a chaat stall just outside the entrance to the colony. The food cart is patronized by passers-by and Sheetal told me that life has been good since starting the business with a helping hand from S-ILF.

I felt this colony had more energy than those I have visited where people mostly rely on begging to survive. But sad to report, I also met a family who told me that someone had attempted to set their home alight the previous evening. The discrimination and harassment that people affected by leprosy face is by no means at an end.