The stigma lingers long after…

“People still believe that if they come into contact with someone who had leprosy – even 60 years ago – they will get infected.”

In his seventies, Niyamat Ullah Khan has been free of leprosy for over six decades, but says the stigma lingers. “My family respects me, but I cannot expect the same from others because of my condition,” he reasons.

Unwilling to bear the looks of pity mingled with disgust, he finally left his home and family in Kupwara and moved to the Behrar Leprosy Colony in Srinagar in 2025.

“I moved because everyone here is equal. I don’t feel excluded the way I did in my village," says the 76-year-old Niyamat. “This place feels like home. I have decided to live here until I die.”

Leprosy is a chronic but curable infectious disease caused by the bacterium Mycobacterium leprae. India reported 1,00,000 cases in 2024, five times the number in Brazil which ranked second in the world for new cases. India has always held the highest number of leprosy patients (also called Hansen’s disease).

Niyamat was a young boy of around 10 years when he contracted leprosy. “I began developing sores. Sometimes they would reduce, sometimes they would worsen. I didn’t pay much attention and continued working,” he tells PARI.

From a farming family, he was sent to work in the fields. “Gradually, the disease progressed. My fingers and toes began to lose sensation. I remember once going to cut grass in snow and burning my fingers without realising it. Later, they began to fall off, one by one.”

He says villagers treated him respectfully, but were unsure about the disease spreading. “What people say behind my back…I don’t know,” he says. His voice carries the pain from that time; the unease of others in his presence lingered painfully.

That was in the 1960s. Leprosy had been widely prevalent for many decades. Data from 1983 showed 57 patients per 10,000 population. That ratio is significantly better – today India has less than one case in 10,000 people. This fall is linked to the introduction of the MDT (multi drug treatment) programme in 1982.

The Behrar leprosy colony houses around 200 people of whom 57 are patients of leprosy.

I have been a resident of Srinagar all my life, and the only time I heard about the leprosy colony was when as a young boy growing up in the capital, we were instructed to collect donations for the it. I had always imagined the leprosy colony as a bleak, unsettling place – crowded with people begging. But when I finally went there, the reality was entirely different.

Here time stands still. Srinagar’s Nigeen Lake, known for its tranquil waters and elegant houseboats, shelters this quiet colony along its banks. Spread over 40 acres in Bhagwanpora, Lal Bazar, it is a world away from the capital city. Rows of single-storey apartments sit alongside ageing huts – a reminder of the settlement’s long history.

It was established in the late 19th century by the British under the Kashmir Medical Mission, and has been home to generations of people affected by leprosy. A small hospital, mosque and graveyard are located within its compound.

This is the state’s only leprosy unit, and public health facilities are provided here free-of-cost services for prevention, diagnosis, treatment and rehabilitation of leprosy under National Leprosy Eradication Programme (NLEP) – a centrally sponsored scheme of the National Health Mission.

Years ago, Niyamat had come to Srinagar from Kupwara in the north, to see a doctor.

“It was Ramzan, and I was fasting,” he says. “When I reached Jehangir Chowk, I bought pakoras for two rupees to break my fast – that was all the money I had. I needed a place to spend the night, so I walked to Tankipora and entered a mosque.”

The caretaker offered him food, which Niyamat declined, saying he only needed a place to sleep. The exchange continued and he noticed a woman standing at the doorway.

“When I asked why she was there, she said she had come to collect the utensils because beggars steal them after eating,” he recalls.

Niyamat was heartbroken. “I left the food and the mosque and walked to SMHS [Shri Maharaja Hari Singh hospital] to see the doctor.” At the state hospital he was detected with leprosy. The infection was spreading, so he was kept in hospital for two months for treatment and observation.

“When I was discharged, I returned home and told myself that I hadn’t won—I had lost. The disease was still there, continuing to damage my body, and at the time there was no proper treatment available,” he recalls.

Niyamat often did small jobs at Amira Kadal like selling naada (cotton strings used to tie pyjamas). He drew attention from the public – a person with physical disabilities trying to make a living. “There are many photographs of me in newspapers. Once, my photograph appeared on the same page as former Prime Minister Manmohan Singh,” says Niyamat, laughing heartily.

He is proud of the fact that he never took to begging and instead always worked to support himself. “But now, towards the end of my life, I feel I can no longer work. That is also one of the reasons I moved to this colony,” he adds. Here basic necessities such as food are provided free of cost.

His family visits him occasionally. He never married as he says the disease made that impossible – marriages into a family with leprosy are still frowned upon. “My brother’s son is like my own child,” he tells this reporter.

Like others, Niyamat says he feels supported by the community’s solidarity, but unique challenges like digital exclusion persist. “I was once told my fingerprint didn’t work when I went to collect my ration from the fair price shop in my village in Kupwara,” Niyamat Ullah said with a laugh, showing his hand without fingers.

“Social stigma still exists,” says Jehangir, his voice rising to draw my attention.

Jehangir arrived at the leprosy colony in 1986. He was four years old and was accompanying his mother who had contracted the disease and was divorced by her husband because of it.

“I have lived in this colony with my mother for 41 years, and I was never infected,” he says. His mother remarried here -- to another leprosy patient, as did many others in the colony. That has changed now and many marry outside, as did the 45-year-old Jehangir.

But moving to live outside the colony is an almost insurmountable hurdle, even for those in high government positions. They have been forced to return once people got to know about their parents being patients in the leprosy colony.

We are sitting on a wooden bench which draws elderly people from the community, looking to chit chat. They say, their eyes twinkling, that this is a favoured spot as one has quick access to donations of food that reach the warden’s office first!

Jehangir still feels the loss of leaving his native home. “We left behind our land and everything we owned. If I go back now, who will return it to me?”

Those who recognise him quickly turn away once they realise that the visit is about reclaiming their share. “The moment they hear that we [he and his mother] have come to claim what is ours, they pretend to not know us.”

So, he is grateful to the government for constructing new homes in 2009, replacing the mud huts they lived in. “Even if it came after 100 years, it still came. But now we appeal for formal allotment of these quarters, just like other settlements have received,” he says, citing the case of the Tibetan colony where people who migrated from Tibet received land in their name.

The lack of legal ownership fuels constant insecurity. “Our biggest fear is that we can be evicted at any time,” he says. “Just last month, a man died here. His quarter was immediately allotted to another patient.” For patients who live here with their family, it is unclear what happens after the death of the patient.

“We only want legal allotment of what was meant for us. We would leave, but where would we get the money to buy a house outside?” he asks.

This story is published under the PARI Senior Fellowship 2025.