Leprosy has always had a stigma attached to it. Half-baked knowledge among people has managed to convince them that it is a communicable disease, that spreads by touch. Consequently, those suffering from leprosy have been cast out from their communities. These people find themselves on the fringe of society. Like other prevalent stigmas, the one surrounding leprosy too is hard to dispel.
Natsuko Tominaga is a photographer with the Nippon Foundation. She is on a mission to remove the leprosy taboo in India. For the last 40 years, the Foundation has been working for the betterment of leprosy patients, and for 16 of those 40 years, Natsuko has been working with them.
We spoke to Natsuko to find out what drives her and how she went about her project.
Natsuko had researched statistics that showed newly-detected cases of leprosy here, in India. Which is why she made it a point to visit the country too.
“Japan has the best facilities for leprosy patients”, says Natsuko, adding that the Government provides them with all the necessities they need, like food, housing, clothing, etc. Leprosy has been prevalent in Japan for a long time, yet, there remains a hint of the stigma surrounding the disease there as well.
Natsuko goes on to add that she had to explain to the leprosy patients why she was taking their photos. Once they understood her motives, they willingly accepted. This reaction was uniform in every nation she visited. She adds that the South American leprosy patients were in fact, quite eager to be photographed and happy to participate in her initiative.
Initially, due to lack of knowledge, Natsuko felt apprehensive and a little scared when she was visiting patients to photograph. Over time, as she gained knowledge, her irrational fear disappeared altogether.
Natsuko’s efforts have been concentrated in putting up an exhibition of her photos from this project. The exhibition titled “Our Lives”, opened on 19th April in New Delhi, and her work garnered a lot of attention.
The photographs feature the people she encountered. She learnt that leprosy isn’t just a disease, but a way of life for many of these people. Fighting the disease as well as the stigma that came with it wasn’t easy.
Naturally, travelling the world must come with its fair share of anecdotes, and Natsuko shares an interesting incident that occurred when she was in Africa. When given a tablet to cure leprosy, these people, as per habit, would divide the pill amongst members of their clan. They were habituated to sharing everything among themselves and had to be taught that dividing a medical pill does not work. Medication needs to be taken in its entirety, for it is not food!
As part of her work with the Nippon Foundation, Natsuko travelled and interacted with leprosy patients all over the world–something very few would agree to do. Through her exhibition, she invites viewers to see people afflicted by leprosy as individuals no different from others in society. She hopes that her photographs from 40 nations will raise questions about rampant discriminations and prejudices.
Natsuko maintains that the photographs she took in India were her favourite and she hopes to have conveyed her message.
All images courtesy: Natsuko Tominaga.
(Edited by Shruti Singhal)