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Articles » "A LEPROSY TALE" published in Tehelka on September 21, 2013


"A LEPROSY TALE" published in Tehelka on September 21, 2013

Mother Teresa awakened my interest in social work soon after I first met her in 1975. From the first meeting, I was drawn to her, to her work, and to the fact that, out of choice, she was as poor as those she had taken a vow to serve. I was moved by her work with leprosy sufferers and their families, which for me was to develop into something of a personal commitment. I helped her to obtain land in Delhi where she wanted to establish an ashram for leprosy sufferers to be treated and housed with dignity. She also proposed to build a small hospital on the grounds for simple reconstructive surgeries.

The problem with leprosy, from the earliest times, was that for long years there was no cure. It was an ugly and disfiguring disease that caused permanent nerve damage, leading to an absence of sensation particularly in hands and feet. The leprosy bacteria is not virulent, it grows slowly, and is a sort of first cousin to tuberculosis. When defected early, it can be easily treated and fully cured. But if neglected or hidden in the early years, it causes permanent nerve damage. Not being able to distinguish pain caused by heat, cold or injury, the patient's hands and feet ulcerate, and slowly the soft tissue on noses and ears also lose their distinct shapes. When people see the telltale bandages of the afflicted, society continues to isolate and shun them. An effective cure became available in the 50's and through its ambitious National Leprosy Eradiction Programme (NLEP), India successfully eliminated this as an endemic disease ( in that the case load has dropped to below one case per 10,000 population ). Nonetheless about 1 lakh new cases emerge every year. Many of them still hide their early signs until the disease comes out into the open, adding to their agony and that of their families. Frequently, their children tend to move away into living lives of disguised identity.

Soon after my first meeting with Mother Teresa, I tried to make myself available wherever she visited Delhi from Kolkata. I accompanied her to her ashrams: the Shishu Bhawan crammed with abandoned infants; the house at Majnu-ka- Tila for the elderly destitute, and the ashram in South Delhi which had mainly disabled children. Although I was busy as Secretary to the Lieutenant Governor of Delhi at the time, I made time to accompany her. I think she was glad for someone who could save her time by taking her to the correct authorities who could help address her current problems.

After several such visits, Mother Teresa gently drew my attention to the plight of the Delhi Government's own institutions and prodded me to get involved in their working. With the help of an unusually committed Joint Director in the Social Welfare Department Shri PC Kumar, and assisted by Dr. Lila Soni, a well known private gynaecologist, we jointly started visiting Delhi government's institutions, and slowly set about reforming them. A particularly terrible surprise awaited us when we visited a girls hostel which housed these young women who, when small, were separated from their leprosy afflicted parents so that they did not contract the disease. To our horror, we discovered that the lady warden was using these children for immoral purposes, by making them bathe on an open roof, where they were placed in view of men who would gather on an adjacent rooftop to indicate their "preferences" to the Warden. We quickly moved the girls to a safer location, took action against the Warden, and set up a committee under Dr Soni to help those hapless charges of our own Government, with trauma care and rehabitation.

Meanwhile, in the counterpart Boys Hostel, many had reached the age of 18 and were now faced with the prospect of being evicted, for that was the rule. But where were they to they go? They were frightened of going to their parents homes for fear of contracting leprosy. We amended the residency rules to enable them to stay on till 21, and then our Committee helped many of them gain employment, chiefly in the Delhi Government itself. Many of them are still working there, now with families of their own. About 150 young men were rehabilitated in this way.

The intervening years kept me busy in various civil services duties, until in 1986 I availed of Study Leave from Government to study the leprosy situation in several parts of the country. I was impressed by the dedication of a number of NGO's who undertook this difficult work. This included some cured (but still disfigured) leprosy patients who spent the rest of their lives bringing treatment and comfort to their fellow travelers.

At the end of this study, I produced a report that I requested Mother Teresa to release. She came especially from Kolkata for a simple ceremony at the India International Centre in Delhi. As was her habit, she arrived early. We sat in Shri Lalit Joshi's home, then working in the IIC. We were soon joined by the Cabinet Secretary Shri B.G. Deshmukh (and Smt Deshmukh) who presided over the function. When I explained to Mother Teresa that Shri Deshmukh was the head of the Civil Service, she wasted no time in asking him to help implement the recommendations that I had made in my report. He was as good as his word. He set up a Committee of Secretaries to look into the issues that had been raised.

A few weeks later, I requested and gained her (somewhat reluctant) permission to write her biography. ("Write about the work not about me, I am not important" she enjoined) After it was written Sinclair - Stevenson, a small but fine imprint in the UK, agreed to publish it. When the royalties started to come in, I intuitively felt that I could not keep them for myself and wanted to plough the money back, in a sense, to where it had come from. I placed my dilemma squarely before her. She advised that I could give to charity if I wished, but with one caveat. She knew that my daughter's wanted to pursue higher studies overseas, for which Mother Teresa had herself provided a reference. She advised me to put aside a portion of my royalties for their education.

It was with the bulk of my book royalties that the Lepra India Trust came into being. (The word ‘lepra' is an abbreviated form of the leprosy bacteria itself). I spent a part of my royalties to buy land from the Delhi Development Authority at the concessional rate intended for charities; with the remaining I started the work. Once a week from 2006, two amazing and committed doctors Dr.Surinder Chadha and Dr Mohan Saha, (who together run an NGO called Karuna Prem), team up with The Lepra Trust. My efforts to rent a hall for a few hours just once a week from another NGO located near the Sai Baba Mandir in New Delhi (where the leprosy afflicted gather every Thursday to be fed), completely failed when I was told to my face that if they offered us space for treatment of our ex- leprosy sufferers, their "normal patients would run away", My pleas that these were "burnt out" cases with no leprosy bacteria left in their bodies and hence were not infectious or contagious in any way, fell upon deaf ears. This is an everyday example of how stigma works in the case of anything related to leprosy. So we continue our work, literally on the street frequently buffeted around by the street constabulary. ("idhar say hato, wahan jao" etc). Since July 2006 these good doctors have helped us to treat over 17,000 patients. They treat their ulcers, change bandages if needed, and also treat them for their day-to-day ailments that no one else seems willing to do, for fear of making any contact.

The Trust, headed now by Shri P.Murari, (IAS retd) a former Secretary to the President of India, also conducts computer classes for completely mute youth; teaches a dozen hearing-impaired children who have been fitted with hearing aids; conducts computer and English classes for children from B.P.L. families; and runs a beauty course, the module of which has provided by Smt Nilofer Currimbhoy, the daughter of the well known beauty expert, Smt Shahnaz Husain. While these courses are commercially expensive, Nilofer has generously given her module free of charge, in keeping with the Trust's policy of providing completely free service.

Among the Beauty class beneficiaries are several girls who themselves are healthy children of leprosy sufferers. In some cases, their parents have been disfigured beggars on our streets. Today in a strange turn of destiny some of these young women who have completed the course, even run their own beauty salons! They have not only been able to join the mainstream of life, but have moved so far from the fear of disfigurement as to now enhance beauty with their own hands.

I had in the beginning of my journey once asked Mother Teresa with what numbers I should begin. She replied "Don't get lost in numbers; even if the ocean in less by a single drop, the work is still worth doing". Over these seven years, this Trust, which in my mind is a covenant of trust between Mother Teresa and me, is less by a cup or two of the ocean's drops.


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