A rendezvous with Leprosy and Lepers of J&K
“There are some people who have deformed face and limbs. They are very scary and dangerous for people, particularly for children. They haunt and hurt children wherever they see them.”
“Perhaps, the elders have seen these people and have faced their wrath. That is the reason they keep us telling these stories. This was normal thinking through which I would look at it.”
This used to be words which would roam in my mind till I myself visited these people who turned out to be nice, caring, beautiful and at the same the hapless people. And the story of childhood, based on falsehood, myth and concoction, finally found its way to extinction. I believed that my elders would had faced their wrath. But later I came to know that the elders, who have actually never visited these leper patients, had themselves heard these cooked up stories from their ancestors.
Some years ago I and Ali; my batch-mate in Master of Arts in Social Work (MSW) from Kargil, Leh, were fortunate to visit the colony. That visit, besides changing my view altogether, taught me so many things. I believe that first visit was my life changing experience as it provided me the opportunity to get exposed to new things. Since then I am the frequent visitor to the colony.
Situated on the banks of Nigeen Lake, the only Leprosy Hospital of Kashmir is located in Bahaar Aar, Lal Bazar area of Srinagar. Bahaar Aar is a Persian word meaning “Pride of Lake”, is the twinning place of isolation and sufferings for the patients who had leprosy. The hospital is now a colony of patients who had to leave their homes because of their illness. Before 1890, there was no provision for the treatment of leprosy in Kashmir. But in 1890, Mr. Lord Roberts, the then Commander in Chief of India, visited Kashmir and fortunately his visit proved productive. He was interested in the work of Missionary Hospital and one of the most enduring results of his visit is the present Leprosy Hospital. Mr. Lord Roberts, not only donated the land for the treatment of rehabilitation of leprosy patients but he also ordered to build a building for the patients. It took the labourers of that time one year to complete the first block of the hospital and the hospital started its work in 1891 with 30 patients.
With the passage of time the hospital administration gradually constructed 12 new blocks for the In-Patients. The then government would offer them food, clothing, treatment and more importantly the shelter. Before 1947, there was a separate ward for the infants of leprosy inmates. Miss L. B. Wemyss was the last superintendent of nursing at that time. In fact, she was the one who was more interested in doing the experiment of conducting the marriage between male and female leper patients. She was keener to see the results out of this experiment and hence she allowed the then patients to marry each other. Unfortunately, the results were against her aspirations as she never knew that one day it will create a lot of problems for them and Health-Aid Workers of Kashmir. As a result of those marriages, the rate of healthy children increased in the hospital and those children were segregated from their parents and patients were not allowed to even touch them because the doctors at that time feared that leprosy is a communicable disease.
Srinagar’s Leper Colony is about 20 minutes distance by walk from Molvi Stop. Entering the colony, there’s a graveyard on the left and Nigeen Lake on its back – on the outskirts of leper colony – with Kohimaran (Hari Parbat) at its right. The place is mixture of old and newly constructed houses, each with two rooms, kitchen and washroom for the residents (patients and their families). Spread over 550 acres of land, this leper colony, as according to its president Mr. Muhammad Lateef, is presently having 78 patients making 59 families. Patients get 1000.00 INR per month from the Social Welfare Department of the State Government. Besides rice, milk and vegetables, each patient gets clothes (for summers and winters), according to Chief Medical Officer (CMO), Srinagar.
Walking more steps towards the community, I found a Masjid on the right side which, according to me, clearly signifies an absolute form of “religious ostracism”. I mean this gives the sense that they aren’t fully connected with the general society. While having a slow walk in the colony so as to assess the things in a better way, I found a man in front of the new house, repairing his cycle while another person helping him. The person was not in a mood to talk to me when I persuaded him for interaction. Finally, after applying some social work skills, I somehow managed to convince him for the interaction. His name was Mr. Samundar Khan who was from Kupwara, one of the frontier districts of Jammu and Kashmir. He is a 1950 born. He came there in the year 1972 when leprosy had attacked him. Knowing about him more, I came to know that he is former BSF personnel and had served in Akhnoor area of Jammu Province. He was assisted by his friend who was from Kargil, Leh. Actually I got my interaction easy afterwards because of Ali who is also from Kargil, Leh. Therefore his ethnicity turned very fruitful for my visit and interaction. Ali talked to him in their local language which helped me to know more about his perception, being a leper patient from Kargil.
While I was interacting with the patients and trying to get more important inputs about the colony, a person was coming towards me with some queries. I greeted him, “Assalamu Alaikum Chacha” (Peace be upon you uncle). He greeted back and I got a warm response from his side. “Tuh Kati Peth” (where are you from), he asked. I gave him my full introduction and purpose of my visit to the colony. He is Mr. Mohammad Akram Mir, a labourer by profession, from Soham area of District Kupwara. He was admitted in the hospital (now colony) in the year 1984. When I asked him about his day of admission in the hospital, he answered; “Tahreeki BronTH Paantch Wari” (five years before insurgency) then I calculated it from 1989. “Every month we get rice from government”, he said. All the patients (now residents as they have lived there since they got affected with Leprosy) talked about unity and said, “aes CHi kuni, aes CHi musalman” (we are equal, we are Muslims). It was amazing as well as inspiring to really observe unity among the patients of the colony.
Then we (me and Ali) happened to meet a person who was well versed with the affairs of the community. His name was Lal Din, who is an old fellow and patient of the colony. “yeli be; admit korhos, yi haspataal oas bariTh 350 bemaaraw saa’et, wan CHi sirf 78 bemaar” (the hospital was full of 350 patients when I was admitted and now we’ve 78 patients only in this hospital), Lal Din, while recalling the past, told me. “We were having proper uniforms which were in black and white. It was before 20 years from now and uniforms were replaced by normal clothes as we demanded for them.” Lal Din, who is full of optimism, hails from Kokernag area of South Kashmir, says, “One should always help others in need, he’ll be rewarded by Almighty then”. Actually his cognizance of the leper colony helped me to know the actual status of the community. “In the evening all elderlies get together for small talks and discussions”, says Lal Din with joyful remarks on his face. Lastly, he said, ‘we have dearth of medicines in the hospital.’
After that we talked to a person from Kargil who is working as a laborer in the colony. His is Mr. Muhammad Musa, aged 45, who is there since his childhood but still unmarried. He talked about the problems in winter all patients encounter. After Mr. Musa, we talked to an old patient namely Mr. Muhammad Eisa, aged 80, from the same place Kargil, Leh. Sits near the door of his newly constructed house with his wife Shakeya Bano who had just one eye open and the other eye is stitched. Eisa got married with her for having a companion as he said, “Koi saathi hona chahiye, akele kya karenge!” (There should be someone, what will I do alone!). But now it seems their love for each other is beyond a simple companionship. They’re living on the “ultimate hopes of each other”. Recently I also met and talked to Mr. Noor Din, who is survived by three children. His story is different from others. Mr. Din has come to the colony when he was just eight (8) years old. He has been in the colony for more than 30 years that’s he has seen three decades in the colony. When he talks about that, it gives the picture of the colony during that time.
It was an interesting as well as fruitful visit to the colony as I got to meet these loving people. All the observational visits poured in me a quest and inquisitiveness to know more about them. Then I began reading about leprosy and the leper patients around the world.
Leprosy, also known as Hansen’s Disease (HD), is a chronic infection caused by the bacteria Mycobacterium Lapra and Mycobacterium Lepromatosis. It is a disease that makes the skin scaly. Initially, infections are without symptoms and typically remain this way from 5 to 20 years. Symptoms that develop include granulomas of the nerves, respiratory tract, skin and eyes. This may result in a lack of ability to feel pain and thus lose parts of extremities due to repeated injuries or infections due to unnoticed wounds. Weakness and poor eyesight may also be present.
Mycobacterium Laprae, the causative agent of Leprosy, was discovered by G. H. Armauer Hansen in Norway in 1873, making it the first bacterium to be identified as causative disease in humans.¹ The first effective treatment, Promin, became available in the 1940s. In the 1950s, Dapsone was introduced. The search for further effective anti-leprosy drugs led to the use of Clofazimine and Rifampicin in the 1960s and 1970s. Later, Indian scientist Shantaram Yawalkar (Dermatologist and Leprologist) and his colleagues formulated a combined therapy using Rifampicin and Dapsone, intended to mitigate bacterial resistance.² Multi Drug Therapy (MDT) combining all the three drugs was first recommended by the World Health Organization (WHO) in 1981.³
Throughout history, individuals with Leprosy have been known as Lepers. Because of the stigma to patients, some prefer not to use the word “Leprosy” though the term is used by the US Centers of Disease Control and Prevention and the World Health Organization (WHO).
Leprosy has tormented humanity for thousands of years. Leprosy has been associated with social stigma for much of history which is barrier to self-reporting and early treatment. Some consider the word offensive, thus preferring the phrase “persons affected with leprosy”. Women suffer greater restrictions and social stigma than men as leprosy prevents mothers from getting too close to their children because of apprehension of getting infected.
January 30, of every year is globally celebrated as World Leprosy Day. It was started in the year 1954 with the motive to draw awareness to those affected by Leprosy.
Transmission of leprosy occurs during close contact with those who are infected. Transmission is believed to be by nasal droplets. Leprosy is not known to be sexually transmitted or highly infectious. But here, it should be noted that people who get treatment within two weeks time get almost cured. (4)
In India, there are approximately 1000 leper colonies with more than 2 lac people living a marginalized life. (5)
After reading about leprosy and getting more clarity, I visited the leper colony of Jammu with the motive to explore more information about them and try to make people aware about them through my experiences so far.
In the beginning of 2016, I visited the leper patients of Jammu. In Jammu, Leper Colony is called as Kusht Aashram. Kusht is the Hindi word for Leprosy. Kusht Aashram (Leprosy Hermitage), a colony of Leper patients which is located at Bagwati Nagar, Jammu. Kusht Aashram was established in 1948 and has been registered under Bhartiya Laachar Sewak Dal in the year 1975. It was a nice experience which I got there, after meeting the people of different regions and religions as well.
That time, there were 55 patients (the number of patients is subject to change) making 125-130 as the total population of the Aashram. Patients are from Jammu, Udhampur, Kashmir, Bihar, Bengal, Orissa etc. Mostly there are Hindus and Muslims in majority with their separate Masjid and Mandir (Temple) to perform their religious duties. Masjid and Mandir (Temple) were set up by the inhabitants of Aashram about 15 years ago.
Furthermore they have separate Graveyard and Shamshaan Ghat. As I observed great Unity among the patients of Srinagar Leper Colony, same I observed among these patients living in this Aashram. They Live, Love and Care for each other irrespective of their Caste, Colour, Region, Religion etc. but at the same time the Aashram is facing great Social Exclusion. I mean the residents (not patients now as they have got cured from leprosy) of the Aashram are secluded from the society because of unawareness among the masses about the disease as they think that, they (patients) are still infectious.
I was fortunate to have interaction with some patients which was different experience from Srinagar Leper Colony. I first talked to a patient whose hands and legs were deformed. He had 5 daughters, 4 are married and one unmarried. “I make out my personal expenses through begging, I go to different places in order to get money through beggary”, he described when I asked him about his personal expenses. Meanwhile I had the short conversation with the President of this Aashram namely Mr. Abdul Kareem who is also a patient (cured) and is there since 1975. He said, “Our expenses are exceeding 12 Lac INR per annum but we get only 1.5 Lac INR per annum from the Government. In the year 2014-15 we received nothing from the Government but this year i.e., 2015-16 we have received 1.5 Lac INR from The Government”. He also complained of some main problems which they’re encountering in their day to day life. He said, we have many problems like, financial problems, patients are neither able to meet their personal expenses nor their medicinal / treatment expenses. Main problems also include transport, like they, mostly old patients, are facing many complications in reaching somewhere. While getting insights regarding the Aashram, Mr. Kareem also revealed that Mr. Showkat Ahmad Khanyari from Srinagar, Kashmir is coming there on every 30th of January to celebrate “World Leprosy Day” which is observed globally on the same day to draw awareness among the persons affected by leprosy. Mr. Showkat Ahmad Khanyari is a former serviceman of Amaranth Shrine Board.
In this Aashram, I also met one Hindu Patient namely Mr. Suram Chand who is there since 4 years and has been abandoned by his son because, as per Mr. Suram, his son has no awareness about the disease as in leprosy is curable. His son is occupied by the notion that he will be infected if his father will live with him, but he don’t know that, after as little as two weeks of treatment people are no more infectious.
Moreover I observed that, donors are coming there after every 30 minutes. Donors are seen as distributing food items among the patients & their children. I became happier when I saw two siblings distributing some food there. Their names were Ayyushi and Anirudh both are students of 12th and 9th respectively. “It is our responsibility to remember these people and my aim is to launch an NGO which will work for these patients specifically”, said Ayyushi in a zealous tone.
Final word: We should always remember that these people are also humans and equally are recipient to general services. We should never digress from our responsibility, which is to have their care as our first priority so that they won’t feel alienated from this society. We must clearly understand that these people do not live like we live therefore, it should be noted that they do not deserve any kind of social ostracism rather, in reiterating this sense, they need our unflinching care, love and support for their self and collective development.
Author is Researcher and Professional Social Worker based in Srinagar, J&K.
Disclaimer: Views expressed are exclusively personal and do not necessarily reflect the position or editorial policy of Oracle Opinions.