International Leprosy Association -
History of Leprosy

  • International Leprosy Association -
    History of Leprosy


    Prof T N Jagadisan

    Status Other
    Country India


    Prof T N Jagadisan, ‘An Autobiographical Sketch’, The Indian Leprologists Look Back. Bombay, 1990, pp. 63-69

    I often say of myself that I did not dedicate myself to leprosy but became a dedicated spirit owing to fortuitous circumstances.

    I was born [October 2, 1909] in a little village near the temple town of Chidambaram a poor boy in a princely family. I inherited great traditions of Tamil and Sanskrit culture which was abundant in my village. My own father was a man imbued with great idealism, piety and. determination to do good to everybody. My mother was also pious. My father unfortunately died in my ninth year but the intellectual, moral and spiritual heritage that he had left for me shaped my character. Even as a student I had intellectual ambitions and an idealistic temperament. Though poor I completed my university education taking the English honours degree. It was my privilege to have had as my college mate the President of India R. Venkataraman. I may he pardoned for quoting a few words from his foreword to my autobiography entitled Fulfilment through Leprosy. It speaks of my student days “Even at college Jagadisan stood out physically and intellectually. Nearly 6 feet tall, studious and diligent Jagadisan compelled attention and respect. He always spoke carefully using every word with deliberation and care. Not for him the casual though or breezy comment.”

    Fate willed it that I should come to know the calamity that leprosy can bring to a family. Even at the age of 4 or 5, I remember my father and his paternal uncle shedding tears as they talked about the leprosy which my paternal uncle younger to my father had contracted. I then knew that Kushta Roga (leprosy) can cause infinite misery and be regarded as the worst calamity that can befall a person and his family.

    It soon happened that I came to know at the age of 10 years that I had a patch of leprosy. I went from doctor to doctor but they all brushed me aside “No, you Tamil boy, you don’t have leprosy”. But as my paternal uncle had leprosy I was nearly sure that I had the beginnings of leprosy. But happily for me the disease never grew and I was able to complete my education taking the highest degree then available in the University of Madras.

    However, inwards I felt a great blow, though outwardly I was always cheerful. I had the infinite capacity to bear my sorrow in privacy. Not a whisper did I give even to my mother. This ability to keep within myself my sorrow and keep outwardly cheerful, really cheerful, not merely by pretence is a characteristic upon which my friends and relatives have commented and I think it has greatly helped in my life.

    Now how did I come into leprosy work? Now my disease began to assert itself after adolescence and I had even only a quiescent phase. Not many who saw me could ever imagine - not even my closest friends - that I had leprosy. Because it was not manifested outwardly either in the feet or hands or the face. In fact if you pardon my saying so I was quite a strong, energetic and good looking young man but a challenge came before me. Even before this challenge came a personal tragedy in life made me realise that there is no such thing as one’s own happiness.

    It was a friend of mine, who happened to leave his own position as professor of English, [and] applied for me, without my knowledge, for a suitable substitute. But as you know whispers and rumours fly faster than aeroplanes and missiles and someone who was not well disposed towards me - there was no reason at all - somebody who had malice without any cause for it. The principal was new to India and I produced a certificate from Dr. Cochrane the greatest authority then in India, at any rate in South India, who pronounced me fit in every way and fought for the right thing to be done. I myself was not disappointed [to not be given the job], but I produced a certificate[:] if at all [possible] I wanted to prove my employability, and not get the employment somehow. On the other hand it was … [the challenge itself] that I think I treasure then and now. Because it was a challenge to come out and, destroy the wall of prejudice which has marred millions of leprosy patients through the ages, so I am afraid, still mars the lives of leprosy patients in some parts of the world - in some parts of India and here and there more firmly and more strongly and in certain contexts like marriage etc.

    So I knew what I was to do. There are so many to teach. I was only 33 years old. Though I had rejection in one place I had invitations to become a lecturer in English in other places. I could have come up very high in society. But I was determined to use my intellectual ability, my physical ability and I had contacts which I could use very well. I had already become a disciple of the Rt. Hon. Srinivasa Sastry who knew I had leprosy but who treated me like his own son - even more than he did before, after knowing that I had leprosy. He asked me not to worry and to go on teaching when he was vice Chancellor of Annamalai University. But when he left I followed him to Madras in order to be with him and to select his letters and to edit his letters which I think was one of my most satisfying experiences.

    Through Srinivasa Sasiri’s golden key I could open all doors including that of Mahatma Gandhi. In Madras I knew Rajaji, Gandhi and whole host of great people. I came to know Gandhiji and Thakka Bappa intimately. Later I came to know Nehruji, Indiraji and so on… So all my life I have used my contacts with great people for the promotion of better knowledge about leprosy, for improving the attitude of the public and the administration towards leprosy work and building a leprosy movement in this country and to a certain extent in the world.

    Now to those who wish to know more about me and my work and what they would call my achievements - I would refer them to my autobiography. But I will now briefly summarise my main activities. My meeting with Mahatma Gandhi was the most memorable meeting. It was February 8, 1945 when I was before “Bapu” [“father”], the gentle, the humble, the great, the Himalaya among men; but still not creating awe, but sheer companionship in you.

    Gandhiji led me on to the establishment of the Kasturba Kushta Nivuran Nilayam (KKNN), the first Clinic being opened on February 6, 1946. The most important thing about the KKNN is that for the first time it inaugurated a new approach to leprosy control with more emphasis on health development. Because it was then popular to emphasise the creation of colonies. Perry Burgess, the great social worker, and President of the American Leprosy Foundation was given to thinking of a “World within a World”, in which several interdependent colonies would be created somewhere in the Pacific. Junior as I was, I wrote a rebuttal. And great and good man that Perry was he wrote to me that he was convinced that I was right and said so in his autobiography that my rebuttal greatly changed his own ideas. I am mentioning this because I was clear in my mind right from the beginning that to make people live in misery and without treatment in the villages for years and years and then to take them in the colonies - frightful colonies in which, nobody ever set foot in those days except the missionary who was running it [-was not the best approach]. I said…. “That is not the right way, because by the time a person comes into a colony or sanatorium he has already worsened in the disease, become deformed and what is worst of all infected others.”

    So the KKNN began with what later became the modern ideas of going to the villages, treating the patient at near at possible to his residence keeping records of survey, treatment, etc. and above all preventing deformity by proper treatment, medically, physiotherapeutically, physically and by keeping health cards.

    Now the KKNN has done 43 years of work with amazing results. The prevalence has come down from 48 per thousand in 1945 to somewhere about 2.5 per thousand. And the incidence, i.e. the rate of new cases, is 0.7 per thousand. I believe it is coming down. But it is MDT (multi drug therapy treatment) was given under the guidance of a very great leprologist, Dr. K. Ramanujam, who is still visiting us periodically. And the results are very remarkable. It has created confidence in the patients, in the public and in the workers.

    Now the first big thing in which I was directly or indirectly involved is that I broached the idea of organising for the first time an All India Leprosy Workers Conference to the Medical Board of the Kasturba Gandhi National Memorial Fund of which Dr. Jivraj Mehta was the Chairman and Dr. Sushila Nayar was the Secretary. Those were the days when communal riots broke out on a large scale in the country consequent upon its partition. So many people thought I was mad to think of a Leprosy Workers’ Conference at this time. But Gandhiji encouraged me and, in fact, his view was [that] there cannot be a more suitable time for holding such a Conference because, in his opinion, the abnormal exacerbation and cruelties that happen are the result of long neglect of problems like leprosy which leave behind a feeling suppressed in the community of injustice, and. so find their expression in other ways, in abnormal ways, in these matters. So he asked us to go ahead even though it was thought at the time that nobody would come from Delhi except for Dr. Sushila Nayar, whom Ganhiji spared at great personal sacrifice for assisting us and guiding us and leading us for the Conference. It was held on October 31 - November 2, 1947. Ultimately Dr. Jivraj Mehta came. Some ministers came because Gandhiji had drawn attention to the Conference some 10 days before, speaking of its special importance. We were a group of some 70 delegates.... small compared to the large number of delegates at latter day conferences. Thakkar Bappa the veteran Social Worker declared the Conference open with a solemn address full of thankfulness to God that the day had come when we can look forward to our own Service, not in competition, but in emulation of the Leprosy Mission, for which he had a great admiration. Mr. Donald. Miller, the Head of the Leprosy Mission who had worked for long in India and was then in London came for the Conference and other missionaries came. Dr. Dharmendra, our seniormost Leprologist was there. I dwell upon this Conference because of its importance.

    We had our own future in leprosy work cut out for us. From then on the Conferences grew strong and. I had the privilege of helping in the Organisation of these Conferences till its Silver Jubilee in 1973.

    After the First All India Leprosy Workers’ Conference, the parent body called the Akhil Bharatiya Kushta Samiti was formed. I became its General Secretary, and Dr. Dharmendra its Medical Secretary. I felt very keenly that we should have an Association which should be responsive to the new needs of India after its independence….and should reflect the ambitions of a resurgent India. The idea was enthusiastically endorsed by Dr. Jivraj Mehta, Dr. Dharmendra, Thakkar Bappa and others, and so the Hind Kushta Nivaran Sangh (HKNS) was formed in 1950. I was asked to become its Secretary with the Head Quarters in New Delhi.

    But since I had started important work in Madras State I was unwilling to leave the work of the KKNN and the other work here. So Rajkumari Amrit Kaur and others pressed me to become the Organising Secretary of the Sangh with Head Quarters in Madras. All this meant extraordinary labour for me. But I took it with God’s grace and with the blessings of Ghandhiji and others and bore it on the whole with their satisfaction and my own in this work.

    As Organising Secretary I toured all over India, even the remotest parts. I had also the opportunity of attending several international conferences. In 1958 I attended the VII International Congress at Tokyo. In l963 I attended the Rio de Janeiro VIII International Congress of Leprology. At these congresses at Tokyo and Rio I chaired the Session on Social Aspects and Rehabilitation. In 1968, at the IX Leprology Congress, I presided over the Section on Physiotherapy and Prosthetics. I toured Europe extensively to contact various Organisations which were coming up and who needed to know our problems. I visited France, Germany, Belgium, Switzerland. All these visits were very fruitful in that they helped the growth of interest by these associations in India.

    I visited Japan a second time in 1965 when I chaired the Leprosy Section of the Pan Pacific Conference of the Royal Society for Rehabilitation of the Disabled (RSRD).

    Now in my work I have done almost everything except the medical work, because I am not a doctor. I have placed the utmost emphasis on the education of people, patients, and their relatives. I know that the education of the educated is the most important task. I have used the press and the radio, TV, the Conference, the Seminar - every means of disseminating information and education.

    I have taken a deep interest in the rehabilitation of leprosy patients, and I have my own particular views on the subject. I think that the important thing is before organising leprosy campaigns, from the very beginning so as to treat the patients in their own villages and homes to teach them the importance of prevention of deformity. To get into their minds the fact that it is the anaesthesia of nerves because of neglect of treatment rather than the invasion of nerves by the disease.

    I’ve always been against a “world within a world”, as I have said earlier in this talk, My approach which I have put into practice at the KKNN was to go to the patient in the village, treat him there, teach the public, the family and teach the patient that with due treatment and care deformity can be prevented. That’s why I published a number of pamphlets in various languages. In fact this led to the publication, in various languages of the world, of a pamphlet that I insisted upon Dr. Paul Brand writing with my little collaboration also, that deformity can be prevented. I took 500 copies with. me to the Tokyo Congress in 1958 and distributed it free.

    Now the deformity is not the direct result of the disease; it is the result of anaesthesia and this should be brought to the notice of the patient so that even with their anaesthesia they learn habitually and alertly to keep their hands and feet quite active and in good condition. Now this may not have happened all over but whenever this kind of energetic approach to rehabilitation by prevention of deformity has been in practice deformity had declined. But we should not forget the old victims of the disease who are still with us, who are inactive, but who have ulcers and deformity. So the physiotherapy and giving proper shoes is a very essential programme and will be so for quite some time to come. And above all what is most necessary is the acceptance of the patient at all levels. And this is the message which Mahatma Gandhi not only taught but showed in his own life. For the Mahatma was one entire being, of whom may be said “Manasyegam, Vachasyagam, Karmesyegam Mahatmanaha ……….One and the same in talk, word and deed. Far away in Africa in these distant days when a leprosy patient knocked at his door in the night he said.... “Come in” treated him like a member of his own family, treated his ulcers. But as he had come on business as a lawyer he saw to it that he was admitted in a leprosy home. But as he went on in his life this acceptance became total and entire. Well known is the story of how he built the hut next to his own in Sevagram and looked after the learned Sanskrit scholar and Satyagrahi Parchure Shastri who was a leprosy patient. This is why I think the Mahatma’s contribution is the most significant and we have a lesson to learn from it. We should not say “I am giving food, I am giving treatment, I am doing everything for them” and not work for their total acceptance as we should.

    Now what of the future of leprosy?

    There should he no future. But how do you do it? But now there is the wonderful drug component of MDT but can MDT alone control leprosy?

    In these days there is migration and emigration of people from village to city, from city to village so much that irregularity of treatment is something against which we should be very careful. But experience at KKNN is that, if diligently used, MDT can create confidence amongst the patient and the population, and that on the whole we have every prospect of success, But it has begun well; it has begun all over the country. But bear in mind, we cannot overcome any disease by medicine alone - the awareness should … grow amongst the patients; the standards of living should grow; the standards of better water, clean environment, better clothes, more soap, better food, all this I think will greatly help. In Europe leprosy was controlled, in my opinion, not by the method of isolation as much as by increased standards of living, increased awareness. I do hope that we shall all work together in a spirit of enthusiasm emotion and diligence that we may conquer leprosy in the near future.

    We must also concentrate on research especially in areas which have still to be tackled. I think in the field of immunology, there is much to do. And I am sure that WHO, ILEP, the various international organisations, UNICEF, all will help in the process of unravelling the mystery of Mycobacterium Leprae which is a tough creature to conquer. With popular enthusiasm with public understanding, with governmental involvement in a fuller measure we should see the empire of the Mycobacterium Leprae abolished by the turn of the century; or early in the first decade of the new century.

    I thank those who have asked me to put these words on the tape very much for the opportunity, which I value.

    This tape received on December 30, 1988.


    Leprosy and the Social Worker 1952.

    Mahatma Gandhi Answers the Challenge of Leprosy 1965.

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