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Living beyond the stigma of leprosy

Asha reaches for the spigot to bathe herself. (photo by Anna Reed)

Asha has had leprosy since she was six years old.  The disease has progressed so much that now, at about fifty years old, she relies on crutches and the support of her husband and children to get by.  At first, she and her parents did not know what leprosy was or that she had the disease that is curable, if treated early.  ”When I came to know about it, it was already too late; my hands and legs were rotten” she said.

The deformities of Asha’s feet and hands, due to leprosy, have made her unable to work a normal job. Her husband, also leprosy affected, works in agriculture. She relies on the the support of him and their three children for day-to-day activities and walks with the help of crutches. (photo by Anna Reed)

Her oldest daughter, Pooja, carries a bucket of water as Asha sits in the doorway of the family’s home. Because her severe deformities from leprosy, she is no longer able to do some basic household chores. (photo by Anna Reed)

She can no longer sweep or gather buckets of fresh water for her family of five.  Nagendar, her husband, is also leprosy affected, but is still able to work the fields along with other people who live in the colony.  He and Asha met in the hospital and fell in love.  They moved to the Kusht Rogi Seva Ashram leprosy colony in Allahabad, Uttar Pradesh, India 16-18 years ago.  Their three children, Pooja, 17, Mala, 13, and Suraj, 11, help with daily chores when they are home from boarding school.

Nagendar (standing) gathers bushels of spinach as others in the leprosy colony bundle them to be sold in Allahabad. The profits from the sales are shared among the people in the colony. The mentality of most of the people in the Kusht Rogi Seva Ashram colony keeps them from begging and allows them to work in agriculture. Unlike some other leprosy affected people, they mostly have no self-stigma about their disease. (photo by Anna Reed)

Nagendar says Asha is very talkative. Despite her physical disabilities, she is very vocal and does not suffer a self-stigma because of her leprosy. She and her husband still want to work normal jobs and only see begging, the fate of many with leprosy in India, as a last resort. (photo by Anna Reed)

Nagendar (center) and other men till the fields for the colony shared agriculture project. They all takes turns working in the fields or other various jobs. (photo by Anna Reed)

Asha and Nagendar say they are not phased by the stigma that much of Indian society has placed upon them and others who are leprosy affected.  They want to have normal work and not to beg for money.  He says his self-respect prevents him from begging.  It would be a last resort.

Asha wipes the dust off the only mirror in her family’s home. (photo by Anna Reed)

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Categories: India
  1. May 22, 2012 at 11:35 am

    Stunning photos & story … So sad that they are shunned, but so inspiring that they don’t give up

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