The banks of Srinagar’s Nigeen Lake are host to Kashmir’s three generations of leprosy patients. They live, grow, marry and die inside the four walls of Bahrar. Sehar Qazi visits these outcasts who are abandoned by their loved ones but haunted by the disease
Situated on the banks of Nigeen Lake, the only leprosy hospital (Bahrar) of Kashmir is located in the Baghwanpora of Lal Bazar area of Srinagar. Bahrar derived from the Persian bahar aaraa, means “pride of the lake” is the twinning place of isolation and loneliness for the patients who had leprosy, also known called as Hansen’s disease. The hospital is now a colony of patients who have been exiled in past because of their illness. The colony was set up in 1898, by the Britishers in Kashmir; the outcasts culled from different parts of the valley and created a community, with three generation now living side by side.
Entering the colony, there is a graveyard on left and the clumps of wild daisies on the right have grown to an extent that it forbids the onlooker to look at the lake present on the outskirts of leprosy colony. The place is mixture of old and newly constructed houses, each with two rooms, kitchen and bathroom for the residents.
Sixty-year-old Mohammad Latief, from Dhara, Harwan, lives with his wife and handles all the complaints and requirements of patients in the leper colony. Disease forced his mother to abandon her three sons and two daughters. It has been forty years since the president of colony left his home with his mother and found another home at the leprosy hospital. His thin body seems losing weight everyday and the sclera has turned red. “My mother had the disease and we left home. She took me with her. She lived here for 20 years. Since 2000, no new patients have been admitted. Now they are given medicines at home,” says Mohammad Latief recalling the past.
Spread over 550 acres of land Bahrar presently has 82 patients making 66 families. Patients get 400 rupees per month from the government besides rice, milk and vegetables. They have been living here since years.
Leprosy was considered to be communicable and a mark of social stigma among community.
Eighty-year-old Mohd Issa, from Kargil, sits near the door with Number 9 written inside a white circle. All the new constructed brick houses are numbered. As he sits, he holds his stick tightly in his hands. He wears over sized black shades, faded clothes and a smile on his face. A lady accompanying him has just one eye open, the other eye seems stitched with the eyelid. She is his wife, whom he married for cooking food. “I have been here since 29 years now. Usually 2-5 patients used to come, but not now. This place is my home. I am living here happily with my wife, Shakeya Bano. Khana kaun pakata, shadi kar liya! (I couldn’t cook, so I got married). I am a blind, what can I do?” says Mohd Issa.
Reshim Jan, from Hayhuma, Kupwara, remembers clearly the date and day of her arrival at Bahrar. She hides her hands without fingers under her pink dupatta when she moves out of her room. Her left hand has an open wound, coloured pale yellow and brown, and the inner skin is clearly visible. Her black eyes have lost their vision and all she sees now is – shadows. “I came to Srinagar with my nephew for the eye surgery. It got delayed and my nephew went back and I was send here. I lost my eye sight in these years. I don’t have a bathroom, nor do I have any water tap. I starve for days in winter, as it is cold outside. My hands can’t bear the cold. There is nothing like home, now it has been seventeen years here. I will die alone in the darkness of this room. This room is my graveyard,” she says as tears trickle down her face.
In 2009, as a mark of tribune to former Prime Minister of India Late Rajiv Gandhi on his 65th birth anniversary, Tara Chad announced to set up a modern housing colony for the patients and their families at Bahrar costing Rs 4.19 crore under Jawahar Lal Nehru National Urban Rural Mission (JNNURM). Till this date the work is still incomplete and patients continue to wait for the day when they will live in their new house. “I am still living in this old room with no bathroom and water facility. The construction work was stopped for some time and now when the work has been resumed, we are waiting for our new house,” says Abdul Ahad Shah, one of the patients.
Kulsum, from Bandipora, got married inside Bahrar, her in-laws were the patients. “In 2009, I got married. I have three children, two daughters and one son. I wish I was married at some other place, it would have been better. I don’t have even a proper place to live here, just one room,” says Kulsum subtly.
Another bride Safoora Begum, who hails from Kargil, married Lal Din of Kupwara at Bahrar. Her thin lean body, her wrinkled face, and the pupil of her eyes narrate her story. She was 20, when she came to the colony. “I married again here. My husband was a good person. I started a new life over here. He died some ten years ago. Presently I am living with my son and daughter-in-law. My health is deteriorating with time and I often have headache, blood pressure, nose bleeding. I usually get unconscious. All these things are written in the fate of a patient. I am a patient!” she says in a hurry showing her hands without fingers.
Leprosy is a chronic infectious disease that affects the skin, the peripheral nerves (nerves outside the brain and spinal cord), and the mucous membranes of the nose, throat and eyes. It is caused by the leprosy bacillus, Mycobacterium leprae. In order to eliminate leprosy from all countries by the end of 2005, the World Health Organization (WHO) formulated a strategy based on the early case detection and treatment with Multidrug therapy (MDT)-“Strategy plan 2000-2005”. In Jammu & Kashmir, leprosy Prevalence ratio is 0.15/10000 population (March 2014).
Khatija, 19, from Kargil lives with her three siblings. Her parents are the leprosy patients. She has recently passed her 12th class examination and the only difference she finds inside and outside Bahrar is in the size of houses. “We have small houses here, outside they are big. My parents have been living here since 21 years. I have friends who live here and we often visit each other’s home. Not many are from outside the colony,” she says smiling.
Tanveer, 19, student at Amar Singh College is often seen with a book. He is the lover of English literature. His father Shareef Din and his mother Zareefa are the patients. He wants to do Phd in literature and talks confidently about the history of the place where he has been since childhood. Tanveer loves to read books. “I have read Othello, Tale of Two Cities, Pygmalion and many other books. I have about 40 books in my room. My parents are living here since last 30 years,” says Tanveer. “This place was given to the people who had leprosy by Britishers. Leprosy is not communicable disease but earlier it was considered to be. See my hands, everything is fine with me,” says Tanveer flashing a half read Jane Eyre book in his hands.
Sharref Din is the Vice President of the colony. He is well versed with the name of the medicines and the changing trend of patients in the colony. “Mostly the patients were from the rural areas like Kulgam, Baramulla, Doda, Rajouri and Poonch. Just one or two are from Srinagar. Initially about 10 patients used to come in a month but now things have change due to the availability of medicines,” says Din.
“Earlier a leprosy patient was instantly thrown out of his house. Small white patches on your skin meant your social life is over,” says Din. “Leprosy turns a patient’s body fragile, weak and finally into a skeleton.”
Inside Bahrar there used to be a school up to 5th standard where children of patients used to study. Later it was closed without any reason.
Jana Begum is the oldest among the female patients at Bahrar. A stout lady, wearing green pheran and back scarf, roams around with a confused look and anger on her face. She has a sixth finger near her left thumb. It seemed lifelessly glued with the skin. She lives with her daughter, Humaira who was born inside the colony. Humaira is married to the one of the families living in the colony. “My father, Abdul Raheem Wani was from Handwara. My mother was left on the bridge near SMHS by her cousin brother, when her parents died. She lived with a family from the same area and worked for years as their maid. Later when she was diagnosed with this disease, she was sent to this place. I and my three sisters are fine just because our parents took complete medicinal course for the disease,” says Humaira, sadly.
Shukur Ali, 85, is the oldest among the male patients who arrived at Bahrar five decades ago. Despite his blindness Shukur continues to wear his worn out spectacle. When abandoned by his community, he left his home in search of a home. “I travelled by foot from Kargil to Sonmarg as no transport was available on this route. Once I reached Sonmarg I took a government bus and paid him 4 annas. It took me eight days to reach Srinagar from Kargil. My friend Ghulam Nabi Karra accompanied me; he was also a ‘patient’,” recalls Ali.
Back then there were no direct roads connecting Bahrar with the Srinagar city. “I came on a Shikara,” says Ali.
Once he reached Bahrar Ali married Fatima, a patient. She was Ali’s second wife. “We lived together for fifteen years, she died some years back. I just had some white patches on my forehead and people said it is leprosy, so I had to leave my house, my family and everything behind. I was rather forced to leave. At that time people were afraid of this disease as it was considered communicable,” says Ali. “In my lifetime 370 people died. We are just few left inside the colony now,” says Ali in a melancholic tone.
There are three things common among all the patients besides their disease – over sized black goggles, deformed limbs and their sharp memory. Nobody takes the name of the disease and they often call themselves-patients.
As Aleksandr Solzhenitsyn writes,
“What’s worse than cancer? Leprosy.”
As Ghulam Nabi walks slowly, his trembling skinny hands, his thin body, black glasses, torn clothes, give glimpse of his life. He is often seen quietly sitting outside the door of his room. His deformed nose seemed to be over shadowed by his over sized glasses. The clothes lay scattered in one of the corners of his room where he sleeps. The noise of the utensils is clearly heard in the kitchen as he has lost his eye sight. He finds it difficult to search things. Interestingly most of the patients clearly remember the numbers of years spent at Bahrar. “I was a kid when I came here, now it has been forty years, exactly forty years. I used to cry and wanted to go back home. When I often saw people here without hands and feet, I used to cry a lot. I went back home many times but then I gave up. I think I may have done something wrong, that is why I got this disease. I am thankful that only this much happened to me. Nobody visits me; I continue to wait for them. May be one day somebody will, may be. There is nothing like a home, nothing!” says Nabi, who hails from Kokernag in south Kashmir.
There are no attached bathrooms. The old mud rooms have separate bathrooms for men and women. Muslim Hand (UK) is written in black on the white marble outside the two bathrooms that are constructed near the crumbling wards.
There is mosque at Bahrar where patients often go for solace. “It has been a long time I have been here. I am also a patient. I also have a family. Marriages are simple here and mostly done in this mosque,” says Misri Khan, the mosque Imam.
The hospital beds outside the old muddy rooms symbolizes that the rooms were once wards for patients. Some of the rooms are locked now which means either the patients have shifted to their new houses or else they are dead.
“We are suffering with many health issues and we usually consult doctors in our own dispensary. We are often given parestemol for most of the health problems. If a patient is suffering from any other health issue we have to go outside,” says one of the patients in the colony.
UNTIL THE LAST PATIENT DIES
It has been four months since around 40 patients in the leprosy colony has been diagnosed with the deadly disease – hepatitis C.
“The cost of the treatment is around Rs 1.5 lakh for six months. We were suggested to continue the treatment only if we had money. I had kept money for my shroud and now it is all gone with the tests that I did in last few days,” says Abdul Ahad, the patient.
Abdul Gani Lone, Budgum, 75, shows his artificial leg while talking, his pale eyes, holding stick in his hand, his sweat covered forehead, shabby clothes, and his stammering voice defines the depth of the miseries he has been facing since years.“I don’t have a bathroom. They don’t give me the new house. Even dogs may die at the place where I live. At this point of age, I find it difficult to walk, but I have to. During a visit one of the health official said to us, ‘jo mar gayen uska kya kareygay’. They are not concerned about the patients. They are more concerned about votes that we have,” says Gani Lone in a disappointing voice.
“In the month of Ramdhan, some of the patients went to see Asiya Naqash, MoS health. She gave us Rs 5000 each but the money for treatment is still awaited,” says one of the patients.
Torn out political posters are visible on the dispensary of Bahrar that was constructed by the British.
When asked about the cause of the disease, the patients say-water! “Court has banned the water treatment plant, but still they mix water which goes to the adjoining areas, you may see yourself! We went to all the officials but till this date nothing has been done. Our problems got buried inside official file,” says one of the patients of the colony.
One of reports of one of the patient reads, Gastroenterology department SKIMS, the cost of the treatment for the period of six months will be approximately Rs 107500. Further it is certified that above mentioned disease is life consuming if not treated.
“People from different areas come and give us rice, old clothes, and other thing. We appeal people to come forward and help us,” say another patient.
“We have provided them medication and have initiated the steps to help them financially. We are talking help from AIIMS to curb the disease. It won’t increase,” says Sameer Matoo, Director Health Service Kashmir.
“Disease has been there since a long time. We have not kept this issue under carpet and are aware of the problem. We have sent a proposal to Government of India for Rs 26 lakh. We don’t know how much time it will take. It is not life consuming disease, they won’t die!” says Asiya Naqash, Minister of Health and Social Welfare.
As some of the patients are shy to share their problems and miseries in front of everybody, they secretly ask for help, showing the photography of their ill son and some ask for jobs for their children who don’t live with them.