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 course 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.
Let me provide a more recent example. An NGO wished to provide medication (basically to change bandages and treat ulcerated wounds) to ex-patients outside a temple in New Delhi. This NGO sought to borrow a hall for just a few hours a week when it was not being put to use, from another NGO that owned a building in the vicinity. Most of these wheelchair-bound affected persons are what are called “burnt out cases.” They are persons in whom the leprosy bacteria have long since been treated and cured, but because they suffered permanent nerve damage, they can no longer feel sensation, neither pain nor heat nor cold, which is why when they injure themselves, they ulcerate. The administrator of the second NGO — “the best in the country” — was asked whether he would spare a hall on Thursday mornings? On persistent enquiries, he answered his telephone to say, not particularly apologetically either, that when he had brought this request to the attention of his Board, they regretted that if leprosy patients of any description were allowed to be treated in their hall, even for a few hours, their “normal” patients would “run away.” Having been associated with this field for over 30 years, I was not surprised to hear this, but it was saddening that attitudes among the educated had not significantly changed over time.
What needs to be said at the outset is that leprosy is easily and completely curable. It is a medieval notion to think of it as a visitation of past life sins as many still believe. We are much more likely to catch a cold and cough than we are to contract leprosy, because the Laprae bacteria incubate very slowly. Its first tell-tale signs sometimes take several years to manifest, and if the disease is treated even at that time, the infection can be halted in a matter of a few months. Its complete cure can take up to two to three years. In such cases, no nerve damage occurs, no damage to noses and eyes, and none of the attendant problems that emerge from losing sensation and, therefore, the inability to feel sharp objects or scalding utensils, the main causes of ulceration. It is then that the ugliness and deformities occur that cause society to recoil with horror or fear from these abject poor people, who from ignorance or fear feel inhibited from disclosing their symptoms in the early stages.
The Government of India, the World Health Organisation, and NGOs have worked assiduously especially from 1980 when the National Leprosy Eradication Programme came into effect. From a caseload of three million registered sufferers (probably four million if one took into account the cases not registered, which was a third of the world’s caseload), India brought the disease down in April 2007 to less than one case per ten thousand population. It has achieved the goal of leprosy elimination as a public health problem. A few States still lag behind, but it is possible to visualise the end of this terribly disfiguring disease in the foreseeable future. A critical reason is that medicine, once so expensive as to be out of reach of the poor, is now provided free by the Central Government. This multi-drug therapy has reached the remotest corners in the country because of the dedication and out-reach programmes of NGOs, as well as some equally committed members of the Government’s eradication teams.
But it is necessary for us as a people to deal with the stigma that attaches to the affected, and even to healthy offspring of leprosy patients if their parentage becomes known. There are still far too many cases of how socially excluded and ostracised these people and their families are. They are driven into ghettoes, for jhuggi-jhonpari clusters will not allow them in their midst. This has an adverse impact on their mobility, inter-personal relationships, employment, marriages, and every other form of social contact. People may donate food to them outside a temple but no one would dream of touching them in the process. The disease is seen by most of us as a visitation of past sins, or of a blemished character, with the result that exclusion is so complete that they are not allowed to even use public facilities or to send the children to ‘normal’ schools. At best, they are seen as objects of pity; at worst, of abhorrence. These attitudes surpass all other man-made barriers such as those of caste, community, and religion. Other diseases are quite acceptable. Tuberculosis, a first cousin of leprosy (in a manner of speaking), is no longer a dreaded word; cardiac disease is actually respectable because it is seen as a rich man’s disease.
While we proceed apace with our control measures, we need to change our attitudes and help rehabilitate such others as we can. Above all, the leprosy-affected want understanding and some respect so that they can be integrated into the mainstream.
(Navin Chawla is Election Commissioner of India and the author of a report titled “The Vocational Rehabilitation and Social Re-integration of the Leprosy Affected in India.”)