Civil Servant, Former Chief Election Commissioner and Author of an International Bestseller.
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Societal Contribution
Overcoming The Stigma of Leprosy
India has achieved the goal of leprosy elimination as a public health problem. It is yet to overcome the stigma that attaches to the leprosy-affected and their families, who suffer social exclusion and ostracism.
Today, as we recall Mahatma Gandhi’s martyrdom, we also observe Anti-Leprosy Day. For it was a milestone in the struggle against the disease and its attendant problems when Gandhiji personally nursed Parchure Shastri, a leprosy sufferer in his Sevagram Ashram. Shastri, a Sanskrit scholar, was his friend and jail-mate from his Yeravada Jail days in 1932. Shunned and humiliated all his life, he asked Gandhiji whether he could live and die in Sevagram. Gandhiji of cours e admitted Shastri but added that he would not give him permission to die! If only one knows how prevalent the stigma against the leprosy-affected is today, can one possibly measure how much greater it was in Gandhiji’s time? Hence the importance of Gandhiji’s real and symbolic involvement for more than five people who at the time suffered from the disease and its attendant hardships.
I do not know that many readers will even go this far in reading this article, because we not only shun the leprosy-affected, we also don’t want to know about it. Let me tell you a little about the enormity of its stigma by giving just two examples. Some years ago, Vinod (name changed) managed to get a job at a petrol station in Delhi. In anticipation of any problem arising in the future, his employer was shown a medical certificate that proved the boy had not contracted leprosy from his parents, who had once suffered from the disease but were completely cured. A few weeks later the employer was to describe Vinod as one of his best workers. Yet a month later Vinod was sacked. His fault? His mother had come to his workplace to inform him about the death of a relative. Her ulcerated hands and feet, covered by the telltale bandages that have become the hallmark of leprosy sufferers, brought the focus of the disease on Vinod. The entire workforce at the petrol station threatened to quit if Vinod was not instantly sacked. The employer said he was sorry, but what could he do? Vinod somehow managed to obtain a job in a restaurant, as he had once worked as a waiter. Seeing that his residential address was a leprosy colony in Delhi, he was not given the waiter’s job. Instead he was made to carry heavy crates of soft drinks on his head from one outlet to another. His health weakened and he contracted tuberculosis and had to leave the job.