When she was a young girl, Rinki Nargame dreamt of studying science and becoming a nurse. After all, she had had enough practice nursing her own father and grandparents, treating injuries and tying bandages, from childhood. That dream died in Class 8.
“All the other students would point to me as the girl from the Kusht Ashram [or leprosy colony]. No one wanted to eat with me or come near me because they were scared they would get the disease. It was just too much. I could not study. I dropped out,” she says.
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Ms. Nargame does not have leprosy herself; in fact, at the Sant Dnyaneshwar Kusht Ashrma in Banganga, Indore where she lives, only 11 people out of the 300 actually have the disease. Like in most of the 800-odd leprosy colonies scattered across the country, most patients are in their 40s or even older, diagnosed at a time when they were few effective cures for the disease.
WHO declaration
While the disease itself may be dying out in the colonies, a lingering, centuries-long stigma still leads to discrimination of the sort that Ms. Nargame has faced. In fact, experts say that the World Health Organisation’s declaration of the elimination of leprosy as a public-health concern in India in 2005 may have reduced attention and funds, making life more difficult for the estimated 2, 00,000 people living in the colonies, the vast majority of whom do not have the disease.
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Leprosy, also known as Hansen’s disease, is a bacterial disease which affects the skin and nerves which can lead to physical deformity and disability if left untreated. Despite a centuries-long stigma, it is not hereditary, it is completely curable, and is only mildly infectious – more than 85% of cases are non-infectious and over 95% of the population has a natural immunity to the disease.
“When the WHO made its declaration in 2005, government attention shifted away from the disease and international funding also dried up. It diluted a very good mission, which had created a lot of expertise… The rationale may not be wrong, but I do think it is premature,” says Vineeta Shanker, executive director of the Sasakawa-India Leprosy Foundation, which is working among the colonies.
She notes that the number of new cases has remained stagnant in the decade since WHO’s declaration and that India still has more than 60% of the world’s leprosy patients. “The multi-drug therapy is free in all government hospitals, but there is not sufficient funds for ulcer care and bandaging, and for public awareness and society sensitisation,” she says.
Anjana Bai Ingle is 45 years old, but easily looks a decade older with deformed hands, feet and eyes, due to late diagnosis and treatment. She was abandoned by her own family, and now counts the community at the Sai Ram Avtar Kusht Seva Samiti at Babulpura, Indore as her family. “I need bandages for my hands and eyes, but the government clinic keeps running out of them, so I have to buy them. Where will I get money to buy them?” she asks.
Aadhaar ordeal
She is eligible for a monthly disability pension of ₹300, which is regularly deposited in her bank account. Since the arrival of Aadhaar, however, bank officials demand fingerprint verification to withdraw the pension amount. She holds up her clawed hand with its misshapen fingers. “Every time they reject me, I feel angry. I feel sad,” she says.
Sarang Gaidhane, who comes from the same colony and also heads the state branch of the Association of Persons Affected by Leprosy, explains that the government has provided alternate methods of verification for disabled people, but that policy has not yet drifted down to ground-level officials. “Every month, for pension and ration, so many of our people have to struggle,” he says.
It is this kind of discrimination that keeps the colonies functional, even as actual leprosy patients in them grow fewer in number. Young people inter-marry within the colonies, treating it as a part of their identity. When S-ILF provided funds to start a ready-made garment production unit in her colony, it provided an escape route for Ms. Nargame and five of her neighbours. “Earlier, I used to work in a bottle factory, but other workers would not even eat with us. Here, it is safer,” she says.
Still, she recognises that the future lies in the outside world. “My grandparents were thrown out of their families and came here when the colony was settled. Their only option was begging,” she says. “My father was diagnosed early, so he has less deformity and works as an electrician, with some begging on the side. Now, I am able to run this business. For my daughter, my dream is that she will be able to study as much as she wants without facing any of the taunting that I heard.”
( This reporter travelled to Indore with the support of the Sasakawa-India Leprosy Foundation.)