Even though leprosy has been eliminated from India as a public health problem in 2005, the dreaded disease continues to rear its ugly head. According to 2016 figures, there were more than 135,000 new cases, accounting for over 60% of the global total. To raise public awareness on this issue, India International Centre, Embassy of Japan and Sasakawa-India Leprosy Foundation together are holding an exhibition. Titled “Our Lives”, it showcases 90 pictures of cured leprosy patients by photographer Natsuko Tominaga of the Nippon Foundation, of which 50 are Indians while remaining are from other countries.
“I want to drive home the point that leprosy is a curable disease and instead of discriminating against those afflicted and cured, we need to accept them,” says Natsuko. Visiting four self-settled leprosy colonies — Allahabad’s Nav Nirman Kushth Ashram and Sai Baba Kushth Ashram, Ma Saraswati Kushth Ashram, Indore, and Hanuman Nagar Kushth Vasahat in Kalyan, Maharashtra, she interviewed and clicked several inmates of which 18 form a part of the exhibition. “These 18 through their images and words, impressed me with their strong message dissemination capabilities,” explains Natsuko, who conveys her thoughts with the help of an interpreter. But then she doesn’t need to speak much for her photographs convey most of the emotions.
What Natsuko holds true for all the photographs is that they reach out to the viewers. Take for instance, Prakash Kulkarni whose pictures compel one to read his back story. Cured while in school, Prakash could not study beyond Class VII, yet through determination and hard work continued to eke out a livelihood and today he is an employee of Thane Municipal Corporation. Fond of working on his body, his work out picture is remarkable. “My father instilled this habit in me and everyday I work out at least for an hour.” Stating that his colleagues treat him well, he feels much has changed over the years. “Now, we have several friends from other localities who call on us and participate in social functions just like the way we do. Likewise eating at restaurants and going to cinema halls too is easier than the past, when we were debarred. Still at times there are the ignorant ones who shy away.” Being pragmatic, he feels the blame lies with leprosy patients too. “One needs to keep oneself clean and dress the wounds so that others don’t find it difficult to socialise.”
NatsukoTominaga
What has stood in good stead for Prakash is his complete honesty about his disease. “I told my wife, Rupali before marriage and that is why she decided to tie the knot with me. In fact she told me ‘You had leprosy. Our marriage will send a strong message to society’.” For Rupali, it was not just his honesty that impressed him. “A teetotaller, he is thorough gentleman with no vices, who loves his parents and children.”
Another heart warming case is that of Anita Bhavre. Married with two sons, she works in a hospital. “My parents had leprosy but fortunately early detection and treatment cured me. In fact no one can perceive that I had leprosy. Many on knowing that I stay in Ma Saraswati ask the reason. I tell them that I live with my mother and others, all of whom have been my companions in bad and good times.” Incidentally, her husband, Vivek, too had leprosy in the past. “Anita was the first person I interviewed and clicked for this show. Very attractive, photogenic with an infectious smile and demeanour, she is full of hope and optimism. A complete sweet heart,” remarks Natsuko.
Natsuko was equally impressed by Kapil Dev who lives with his son, daughter-in-law and grandson. Referring to his family as his strongest support, Kapil dotes on his grandson. In fact, on being told that he was being clicked for an exhibition, he remarked, “Be happy – and thanks for looking at our photos.” According to Natsuko, “Despite severe hardships and deprivation, he is a of strength and cheerfulness. I was deeply touched by his profound message for the show, which conveys a lot.”
Kapil Dev with his grandson
Having accepted bias as a part of their life many still feel the pangs of the illness and discrimination. The 65-year-old Prabhu Nath, observes, “I was happiest when I was a kid, because I could run.” Talking about this temple priest of Sai Baba Kushth Ashram, Natsuko says, “He suffers a lot because of body pain and cried even during the photo shoot. Yet, as a priest he gives strength to inhabitants. Perhaps having been spurned by fellow human beings, they find solace in God to carry on with their life.”
Similar, are the cases of Bideshi, who left home at 15 to protect his family from stigma and Ram Gopal whose wife and sons left him to fend for his own at Sai Baba Ashram. His inmate Dharam Nath Tiwari, though longing to visit his village in Bihar, can’t do so. “I have to play dead so my family can live in their village without stigma,” he says. Many are physically, mentally and emotionally shattered when they compare their past with the present. Says Hari Har Nand, “I was a skilled worker. I knew carpentry, cooking and other skills. I had to leave everything and ended up as a beggar.”
These cries of anguish truly reflect the sufferings of a lifetime. “Living in squalor and poverty, they are not expecting any favours but just love, friendship and warmth. They wish for a life of dignity as part of the mainstream and not outside it,” sums up Natsuko.
(On till May 1 at Art Gallery, India International Centre, 11 a.m. to 7 p.m.)
