No taboo this

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Changing perceptions improve the life of leprosy patients in Kashmir but they want their normal children liberated from their shacks. Shazia Yousuf spends a day in Srinagar’s Leprosy Hospital and colony.

A leprosy patient walks on crutches past the shacks they live in. Photo: YAWAR NAZIR

A leprosy patient walks on crutches past the shacks they live in. Photo: YAWAR NAZIR

She has no hands to raise in prayer. Her wrists are covered in tattered bandages. But when asked about the perceptions of people regarding leprosy, Taja Bano takes her wrists out of a worn out shawl draped on her body, lifts them up towards heavens and yells – Alhamdulillah (thanks to Almighty Allah). Taja is one among the earliest surviving entrants to the Leprosy Hospital at Barhar Srinagar, now a colony of 95 patients like her and their families.

“I was the only child of my parents. But they got me admitted here once I caught leprosy. Nobody except my mother would visit here” says Taja. “But now times have changed, so has my luck,” she says with a giggle.

Taja has married her three sons in the “normal” world outside the leper colony. For her, sleep is blissful when her “normal” grandchildren are allowed to nestle against her through the cold nights. “My daughters-in-law respect me more than my only daughter. I share my food with them,” says Taja. Her daughter-in-law walks in to put her 9-month-old son Mudasir in Taja’s lap.

Two decades back, marriage would mean nothing more than permission from the concerned doctor and a Nikaah ceremony in the local mosque. No celebrations would follow, no feasts would be relished. Mohammad Shareef has dreadful memories of that period. He says he had developed symptoms of leprosy. “Villagers pressurized my father to drive me out. I was admitted to this hospital 25 years back. It took me four years to be able to work. I worked as a labourer and married a leper,” he recalls. “I deliberately reveal my identity to people I work for. Now, I am not treated that badly. I am served food and paid like any other labourer,” says a visibly satisfied Shareef.

Other patients at the hospital agree with Taja and Shareef. They feel that there has been an enormous change in people’s perception towards their disease. They are able to cross the line of taboo. They have friends outside the boundaries of the colony. The recovered leprosy patients work as labourers and their able-bodied children study in private schools. The colony has produced an engineer, a doctor, and many graduates. And in recent elections, Naasir Ahmad Naiko, a middle-aged member of this colony contested elections as a Bahujan Samaj Party candidate.

A primary school had earlier been established within the colony. Nobody studied beyond the primary. But now the number of literates almost equals the number of patients inside the colony.

Shareef’s son Muzzaffar is in college. His mother Jameela, herself a leper, wants him “to study higher”. But the family lacks resources. Muzzaffar complains that government does pay any attention. “They just feed us, as if we are animals,” says Muzzaffar. “But I want to fly. Fly high! Away! ” confesses the 19-year-old boy.

In his dreams, Muzzaffar may be flying high but in reality, he has little space to span his wings. His parents were provided a single-room-shack when they got married. Twenty-four years later, they still share the same room with their four children. Their elder daughter is a graduate, two younger daughters study in higher secondary classes. Muzzaffar studies at his friend’s home.

Set up in 1891, this place was just a hospital. Patients were not allowed to marry. Some two decades later the medical and social authorities allowed two leper patients to marry, but only as an experiment. A healthy baby girl was born. This set the trend and patients were allowed to marry. Families grew and the hospital premises changed into a residential colony.

But the authorities only cater to the needs of registered patients. Their healthy children and grandchildren do not get any support.  Farooq, a 6th-grade student is too young to understand the hardships ahead. Though he writes “leper colony” as his residential address, he doesn’t know what it means. He calls leprosy kyahtaam do’ad (some disease). “My grandparents had some disease due to which my grandmother lost her eyesight and grandfather his toes and fingers,” he confides.

But Farooq doesn’t want to leave the colony. He loves the picturesque landscape. He loves the mountains and the Nigeen Lake just beneath. The colony has numerous orchards. Yet, the leper community is not allowed to eat from the trees – almonds and walnuts. At the end of each year, the Health Department puts the harvest on auction. “But orchards are my favourites,” chuckles Farooq, while dangling from an almond tree branch. Rather than providing any facilities, the land around their shacks is being used for other purposes. A water lifting station has been set up by the Water Works Department inside the colony.  A Sewage Treatment Plant (STP) for Nigeen Lake is also under construction nearby.

“We have pinned all our hopes on the new government. A suitable lodging for children should be the first priority,” says Taja, putting a sleepy Mudasir in his baby cot.

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