Coming from a place where Saadut Hasan Manto bled his pen dog in the hinterland games of the two hostile neighbours, one of the ‘inmates’ of Kashmir deplored colony decries the social stigma associated with leprosy despite the disease being controlled and effectively curable.
Engrossed in storytelling, Parvez Alam used his bare fingers to level the hot embers in Kangri, a traditional firepot to battle Kashmir’s harsh winter.
Matter of fact, he did not even realise, for his nerves fail to send any sensory signal to his brain. The 46-year-old does not feel any sensation in his arms and legs.
At a mere age of 10, Parvez was diagnosed with the Leprosy.
The disease killed his nerve endings, disfigured his body skin, and left behind the wounds for a lifetime. He tries his best to cover the damage.
Only recently he invested in an “expensive” pair of hand gloves and socks, however, for he cannot walk around hiding his face, his leper identity is left exposed.
One usual characteristic of a former leper is the ‘Leonine facies’, where his facial feature resembles that of a Lion. Parvez’s eyebrow hair and eyelashes have fallen, and with a pigmented skin and an evident nasal destruction, he comes quite close to pulling off that lion face for my better understanding. “Did that scare you?” he joked, “I find it funny, but not the normal world.”
I met Parvez on my visit to Srinagar’s Lepers Colony in Bahrar on the banks of scenic Nigeen Lake, set up by the British administration in the 1890s, when Leprosy had Kashmir in its grip.
Back in the time, about 130 patients across Jammu and Kashmir were reportedly gripped with Leprosy. Over the years, the colony became home to several patients, and at present, like Parvez, there are as many as 71 others, addressed as “inmates”, who have made a distinct little world of their own, living with their respective families in a two-room setup.
But despite having won the battle against Leprosy, the tag of a former Leper haunts them each time they step out in the “normal world”.
The stigma held by the society about this disease has remained deeply rooted for years. Although it has been medically proven that Leprosy is now only mildly contagious, the fear remains, and the myth that its victims are “cursed”.
Let alone the common people, there’s ignorance even among the doctors and medical experts.
Only recently, one of the inmates was denied medical treatment in the Bone and Joint Hospital, Barzulla, because of his history with Leprosy.
The medical officer of the Lepers colony had to intervene with the medical superintendent of the hospital to assure that the individual is Leprosy-free and safe to proceed for treatment.
By how Parvez spoke, it seems like the Leper victims, on the other hand, have as well accepted their “indifferent” social status. For instance, while successful marriage proposals are usually a happy anecdote, the story of how Parvez met his wife, Maryam, is a bitter tale of compromise and settlement.
He narrated: “When I sent my proposal to her, she had the option to choose from four other men… but she settled for me, a leper victim. Now you will ask me – what would be the reason? That is because my wife is a handicap, herself. Her right leg falls short of the ground when she walks. She knew, had she went with that police officer [one of her suitors], he could have betrayed her. Whereas I am harmless, a handicap like her, who would understand her suffering as much.”
There is an evident psychological impact on even the descendants.
Despite being a third generation, far and away from Leprosy, many have to hide or lie about their ancestor’s medical history for mere “acceptance” in the society.
I tried conversing with the younger generations of four different families, all were hesitant to speak on record, or reveal their identities. They did not want anything to be reported on their forefathers, or their life in isolation and despair.
While the world was introduced with the concept of quarantine during the COVID lockdown, this Leper institution has been in isolation ever since it was set up.
In fact, it was structured in a way that the people here do not mingle with the outside world.
Built under ‘Kashmir Medical Mission’ on the expanse of 312 kanals of land, donated by the then Commander in Chief of India, Lord Roberts, it presently has 62 single-storeyed cemented white houses, four mud structures designated as male and female wards, a double-storied hospital in the extreme, a mosque, and a graveyard.
The colony as well bears the old structures that have now been abandoned.
The hospital staff consists of a medical officer, two medical assistants, two nursing orderlies, a sweeper, a barber and a gardener.
The residents here have always remained under the surveillance of the government. Presently, it falls under Director Health Services, Kashmir, and from food to shelter, everything is taken care of.
Each person is provided with 11 kilograms of rice every month, fresh bread every day, and has a free medical care in place. The residents are also given Rs 2000 monthly allowance by the Social Welfare Department.
Among these dependent denizens, Parvez was deprived of parental love all his life. He lost his father when he was still a kid, and his young mother, with a life ahead, married another man.
“If not because of the government aid,” he says, “I don’t know how my upbringing would have been.”
Hailing from the Line of Control (LoC) village of Tangdar in Kupwara district, Parvez comes from the nomadic Gujjar tribe. Away and ignorant of the modern ways of medical treatment, his tribe depends on the traditional medicines, and was hence the most common casualty of Leprosy in Kashmir.
Back in the 1980s, he recalls, a shrine across the LoC became popular among his tribe, for its free food, shelter and aid for the Leprosy patients. Unaware of the colony in Srinagar, and with society taking notice of his disfiguring skin, Parvez decided to cross the mined fence. His attempt was foiled as his movement was brought into the notice of government forces.
The State District Magistrate had to intervene, and on knowing Parvez’s medical condition, arrangements were made for him in the Srinagar colony. Since then, it has been 35 years.
With wife Maryam, Parvez has a daughter, who studies in class 9. Although what the government provides is “sufficient enough”, he still works in a houseboat in Nigeen as a tourist attender to fund his daughter’s education, for she could grow up to live the life of a “normal”.