公益財団法人笹川記念保健協力財団
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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

EXHIBITION: “Our Lives”

Photo exhibition documents the lives of people affected by leprosy in India.

Over the past 16 years of visiting communities of people affected by leprosy around the world, I have always been drawn to the issue of discrimination and its impact.

Last December, I travelled to four self-settled leprosy colonies in India to document the lives of people who have experienced leprosy and its stigmas.

India has around 800 such colonies. While no new colonies have formed in recent years, they bear witness to a time when the severity of discrimination was so great that some people found themselves with no alternative but to live alongside other people affected by leprosy in their own communities.

The colonies I visited were in Madhya Pradesh, Maharashtra and Uttar Pradesh. The resulting photographs feature in an exhibition, “Our Lives,” being held in New Delhi between April 20 and May 1, 2018. These images are supplemented by others that I have taken as I accompany the Goodwill Ambassador on his overseas missions.

UPROOTED LIVES

In the colonies I visited, I met individuals affected by leprosy who have overcome discrimination with the support of their families, and others who lament how leprosy uprooted their lives and exposed them to society’s prejudices.

Unfortunately, old perceptions about leprosy are not easily erased and are further reinforced by stigmatizing language, which reduces a person to his or her disease.

“Our Lives” is intended to encourage viewers to see the world from the standpoint of people affected by leprosy and ask themselves why stigma and discrimination persist in society.

Ultimately, I want to show that people affected by leprosy are ordinary human beings, too. Leprosy doesn’t change that fact – it’s just a disease, despite what some people think.

The following images are of some of the people I met in India last December who shared their stories with me for the exhibition.

Anita Bhavre, 35

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Anita Bhavre is raising two sons. When I met her I was attracted by her positive attitude and noted the proud expression on her face when she told me she worked as a housekeeper at the nearby hospital. “Do you want me to change into my uniform for the photo shoot?” she asked?

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She contracted leprosy when she was six or seven. Because she was treated in good time, she didn’t suffer any deformity. “My life would have been more difficult otherwise,” she told me.

She likes to get together and chat with other people, passing on helpful advice. Her favorite place in the colony is the temple precincts (above) where people gather. She told me she wants to stay strong so that she can motivate others and help change society.

For Anita, leprosy is just a disease. When I asked her what she would like to tell people who come to the photo exhibition, she replied: “These are not ‘leprosy-affected people,’ just normal human beings like everyone else.”

(Ma Saraswati Kushth Ashram, Indore, MP)

Babita Kishore Ajnare, 40

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Babita (second from right) with her daughters and grandchildren.

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Babita contracted leprosy when she was 18. She told me her great grandfather had been buried alive because of the disease. “Now it’s curable and is nothing,” she said.

Although she herself is not disabled, Babita has noticed how those with disabilities get ignored or given strange looks, and it upsets her. “There shouldn’t be any discrimination. Everyone should be treated as part of society.”

(Ma Saraswati Kushth Ashram, Indore, MP)

Subhash Kailash Sen, 35

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Above photo: Subhash with the rickshaw he inherited from his grandfather; right-hand photos, clockwise from top: Prakash and Rupali; son Shubham; Prakash flexes his muscles

Subhash comes across as a very decent person. He works as an accounts officer and lives with his wife, son and father. His hobby is listening to music.

When his grandfather fell ill, his company gave him time off so that he could nurse him. Following his grandfather’s death, Subhash inherited a rickshaw from him. From time to time he works as a rickshaw driver in his grandfather’s memory.

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Although he says he hasn’t experienced discrimination himself, he was aware that his grandfather had been forced to leave his village because of leprosy.

“Leprosy shouldn’t be thought of as a dreadful condition. It’s just a disease. Once it’s treated, it isn’t a disease anymore,” he told me. “We are human beings too.”

(Ma Saraswati Kushth Ashram, Indore, MP)

Kailash Sen, 65

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Kailash Sen is Subhash’s father. He has a warm expression that hasn’t been dimmed by the indignities he has experienced in life. He came down with leprosy as a child. “Things changed after the deformity appeared,” he told me. “I have felt discrimination many times, such as shopkeepers refusing to sell me anything.”

“There is no need for that kind of behavior. Everyone deserves to be treated with respect. People should accept that leprosy is a disease, a curable disease.”

(Ma Saraswati Kushth Ashram, Indore, MP)

Prakash Kulkarni, 48

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Prakash Kulkarni says that leprosy has made him a strong person—and he also keeps in very good shape. “My father always told me to take care of my body. That’s why I keep muscular and fit.”

Prakash had to leave school because of leprosy, but carved out a path for himself through hard work and determination. Today he works for the local municipal corporation.

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He lives with his wife Rupali, their three children and his mother. The happiest moment in his life was when he asked Rupali to marry him, “even though I've had leprosy.” Rupali replied, “You had leprosy. Our marriage will send a strong message to society.”

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It was obvious they are a very close-knit family. “Don’t look at his face. Look at his heart and see how beautiful it is,” said Rupali said of her husband.

“My father is a brave man. He looks after his family,” his son Shubham added.

(Hanuman Nagar Kushta, Maharashtra)

Bideshi, 55

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Bideshi’s symptoms appeared when he was 15 and he had to leave home to protect to his family from the stigma. He came to Allahabad for treatment, and lived by the side of the road for a year, working as a rickshaw driver. He is married with two sons and two daughters.

“Leprosy is nothing, and it’s a lot,” he told me. “It gives no physical pain, but there is a lot of emotional pain from society.”

(Nav Nirman Kushth Ashram, Allahabad, UP)

Hari Har Nand, 60

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Hari Har worked as a cook for a government officer but had to leave his job after being diagnosed with leprosy when he was 40. “I was a skilled worker. I knew cooking, carpentry and had other skills. But I had to leave everything and ended up a beggar,” he told me.

In his experience, leprosy is a disease that pushes people away. “But it’s just a disease. Don’t hate people. Keep together.”

(Nav Nirman Kushth Ashram, Allahabad, UP)

“Leprosy made my life worse. If it wasn’t for leprosy, I’d be living a normal life, just like you.”

Dharam Nath Tiwari, 80

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Nobody in Dharam Nath Tiwari’s home village in Bihar knows he is still alive, other than his family. After being diagnosed with leprosy in 1978, he was treated at various locations before ending up in Allahabad because he wasn’t welcome back.

Many years have passed since he last attended a function in his village. “I have to play dead so my family can live without stigma,” he told me.

(Sai Baba Kushth Ashram, Allahabad, UP)

Lala Soni, 80

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Lala worked as an ornamentalist. He contracted leprosy at the age of 35. The saddest day in his life was when he lost his foot. Now he can’t stand and he can’t work. He told me he has experienced numerous instances of discrimination as a result of leprosy. “Leprosy made my life worse. If it wasn’t for leprosy, I’d be living a normal life, just like you.”

(Sai Baba Kushth Ashram, Allahabad, UP)

Sahtreen, 45

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Sahtreen’s words left a big impression on me. “What was the happiest time in your life?” I asked her. “My youth, because it was joyful,” she replied. “And the saddest time?” “My youth, because it was destroyed by leprosy.”

(Sai Baba Kushth Ashram, Allahabad, UP)


Kapil Dev, 67

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I photographed Kapil (above left) with his son and grandson. When I asked him if he had a message for people coming to see the exhibition, he replied: “Be happy! Thank you for looking at our photos.”

(Sai Baba Kushth Ashram, Allahabad, UP)

AUTHOR:Natsuko Tominaga

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Natsuko Tominaga is the official photographer of The Nippon Foundation.