Chck out Frannie’s post of Murti’s full story at the class blog.
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)
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)
She waits patiently for her husband to muster up the energy to lift his leg so she can help him attach his prosthetic. He spent the morning in a blue cart he built for himself after the affects of his leprosy became so much that he could no longer work as a carpenter. He now spends every morning begging for rupees and rice in the area where the Ganges and Yamuna rivers meet. The place is flooded with tourists. But he only receives about 50 rupees (about 1 dollar) a day.
People walk past as Bacchalal begs for money. People who are leprosy affected in India face a social stigma, that forces many to live in isolated colonies. (photo by Anna Reed)
A child stares as Bachahalal as he sits and begs for money. He is missing a leg because of leprosy, leaving himself and his family stigmatized by much of Indian society. (photo by Anna Reed)
At midday, when the sun is strongest, she comes to get him out of the sun and back to their bamboo and mud home. She pushes him in the cart about half a mile, up a hill before arriving back home. Her back bends and her thin legs move slowly as she struggles to push him up the hill, past the tourists, other beggars and piles of garbage. Once home, she helps him bathe himself under the public water spigot.
Bacchalal runs water over his leg. He lost it to leprosy and most of his toes on the other foot. (photo by Anna Reed)
Bacchalal and Subhadra Yadav have lived in an isolated leprosy colony for most of the marriage. Their daughter, Usha, was born and raised there and now is raising her five children in the home next door to her parents. She and her children are healthy, but face a social stigma, as well, because her father is leprosy affected. (photo by Anna Reed)
Bacchalal and Subhadra Yadav live together in the Nav Nirman Kusht Ashram colony in Allahabad, India. They have lived there for about 40 years. Bacchalal is leprosy affected, so the social stigma forced upon him forces him to live in an isolated community with other leprosy affected people. She does not have leprosy, but has boils covering her entire face and body, leaving her stigmatized as well.
Subhadra wipes sweat from her face in the bamboo and mud home she shares with her husband, who is leprosy affected. She has boils that cover her face and body, which leaves her stigmatized by most of Indian society. (photo by Anna Reed)
Leprosy is a completely curable disease, if it is treated in time, and is not contagious. It is not hereditary. It is started because of a micro bacteria entering the body. Many people in India are not aware of the reality with the disease, so the stigma still exists, despite the medical facts.
They feel that they can do nothing except beg for money so they can have enough to feed themselves. They live with a self-stigma as well. They say they are ashamed of the leprosy and do not see any other opportunities for themselves.
The great Jon Augustine and I spent the weekend getting to know the people in the Kathputli Colony slum in Shadipur, New Delhi. They are a group of about 9,000 people in street performer families. For generations, the street performers were gypsies and would travel the country, performing their magic, puppetry, music and dances for passersby. But since India’s independence from the British, street performance permits have become almost impossible to obtain. The lack of steady performances has forced the colony into a slum, unable to afford to travel anymore.
Ishamuddin Khan is a Kathputli magician and has traveled the globe, performing his tricks for people in Japan, Holland and Scotland, to name a few. Every family passes down the traditions of their art to the younger generations.
Khan is now passing along the tradition to his sons, even if they cannot perform on the street anymore. Khan and his family now rely on school performances and birthday parties for wealthy families to perform their magic and puppet shows.
The land the Kathputli Colony lives on is owned by the Indian government. It has threatened to eviction the colony and bulldoze the homes and huts. Khan argues that they need the permanent land because they can no longer afford to travel because of the restrictions on street performance permits. There has not been a set date for the evictions, but worry still lingers.