Japanese photographer Natsuko Tominaga’s portrait of a smiling 65-year-old Kailash Sen taken at the Ma Saraswati Kushth Ashram in Indore was on display at Delhi’s India International Centre as part of a recent exhibition titled “Our Lives” that delves into the lives of those affected by leprosy. The explanation for the photograph tells the viewer about Sen’s experience, how shopkeepers refused to sell him anything and how he continued to face other forms of discrimination after the infection. The tale of 60-year-old Hari Har Nand, photographed in a crisp white shirt and a blue and black dhoti, takes us to Nav Nirman Kushth Ashram in Allahabad. Nand once worked as a skilled worker, with his inept knowledge in carpentry and cooking but had to give it all up. He ended up on the streets as a beggar.
In the last 16 years, Tominaga has been diligently working as staff photographer for the Nippon Foundation, which has been involved in the past four decades in the elimination of leprosy. Popularly called the Hansen’s disease, owing to the discovery of the bacteria causing leprosy by Norwegian doctor Gerhard Armauer Hansen in 1873, Tominaga has been documenting the lives of those suffering from leprosy and the stigma and discrimination they experience in their everyday life. This has led her to photograph leprosy patients in 40 countries, including her recent visit to the country. “I was intrigued by how one family had an extended four generation family. On the contrary, in Japan, government policies in the past did not allow leprosy patients to have offsprings. I had also met another family, where the head of the family, the father, was diagnosed with leprosy and the entire family decided to move to an ashram to avoid discrimination towards them,” she says.
With India reporting most number of leprosy cases, over 1,35,000 news cases were reported in 2016 alone, forming over 60 percent of those affected worldwide. The reach of the discrimination is such that most of those affected by leprosy have to resort to living in colonies along with others affected by the chronic bacterial disease. Tominaga also photographed Dharam Nath Tiwari at the Sai Baba Kushth Ashram, who was seen with bandages wrapped around the deformed fingers of his feet, and specially designed flat shoes that enable him to walk. After being diagnosed in 1978, he had to go missing from his village in Bihar, where most neighbours and friends think that the 80-year-old is now dead. Hoping to make people ponder over how leprosy is a disease that results in immense discrimination, Tominaga, 49, aims that her photographs “can bring about social change”. Babita Kishore Ajnare from Indore told the photographer about her great grandfather who was buried alive because of leprosy.
Among 90 photographs, 50 have been shot in India, and 40 in other countries including Spain, Russia, Ukraine and Uzbekistan. A photograph from 2014 has Hoshizuka Keiaienm, an elderly woman housed at a leprosy sanatorium in Japan, which sheds light on the country’s stringent segregation law that was repealed in 1996. Forced abortions became a routine feature for the sufferers and many were imprisoned without trial if they tried to run away from the premises. “So people needed to leave their home and family. What the government and people did to them was not appropriate,” Tominaga says, adding, “I want people to know that leprosy should not be the reason for discrimination because we are all humans and no different from each other.”
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