World Leprosy Day: 'Not Just Disease, We Have To Fight Stigma Too'

India is home to the most number leprosy patients in the world. One such colony is in Delhi's West Patel Nagar.

Several leprosy patients have been living for decades at a colony in Delhi's West Patel Nagar

Image altered by The Quint/Aroop Mishra

Video Producer: Maaz Hasan
Video Editor: Vivek Gupta

In India, we celebrate World Leprosy Day on 30 January every year to raise awareness of the disease and call for an end to leprosy-related stigma and discrimination.

India is home to the world's largest leprosy patients in the world. On an average, 57 people per 10 lakh population in India are diagnosed with the disease.

One such cluster of people lives at the Lok Matha Kusht Ashram colony in Delhi’s West Patel Nagar. There are 52 families living in the colony, and at least one member in each family suffers from leprosy. These people have been living here for the last 50-60 years and all of them are from the state of Telangana.

I have been living in the colony since my childhood. My parents had leprosy and they were kicked out of their house because of the stigma attached with the disease.

Earlier, people used to think that the disease is communicable and if anyone comes in contact with the patient, they will also be affected. Some people also thought that this was a curse given to some of the human beings by god for their wrong deeds.

In my childhood, when I used to go to school, teachers and fellow students used to stay away from me, thinking that since I am the child of a couple having leprosy, I might spread among others, even though I didn’t have the disease.

Though the stigma has reduced, the taboo still exists in the society which makes the lives of these people even more difficult.

All the people suffering from leprosy in the colony, are either unemployed or unemployable, so begging is their only source of income.

“Earlier, I used to go out to beg but that has stopped due to COVID-19. Now we stay at home. If someone donates something to eat, that helps. Otherwise, we are somehow surviving.”

Shelly, Leprosy Patient

For many of us living here, the houses are so small that in the same space, we have a kitchen, bathroom, and bedroom. Women in the family somehow manage to sleep on the single bed while men have to sleep at the nearby temple.

The government needs to understand the problems of these patients suffering from leprosy and aid them.

Leprosy-affected people started getting pensions in 1994. Since then, no new pension cards have been issued. Earlier, 35 people from the community used to get pension. Many of them have died. Only eight people over here now get government pension. The government isn’t issuing any new pension cards.

The people cannot work, and nobody gives them a job after looking at them. Since their condition is so bad, people distance themselves from them. And they too are in such a condition that they cannot work. We request the government to help these people who are affected with leprosy.

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