Anil Kumar Saroj is a social worker and Community Correspondent who reports on issues related to employment, corruption, caste, and women’s rights. A spirit of entrepreneurship and a commitment to justice and equality are deeply embedded within Anil. His lower caste status caused him and his family to experience discrimination and unemployment. The hostility drove his family to move to…

Anil Kumar Saroj

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While India claimed to be leprosy-free in 2005, a family from Bhawanpur Chauthar village, Uttar Pradesh is still facing discrimination due to leprosy.

In the report of the Global Forum on the elimination of leprosy, World Health organisation, India claimed to achieve the national elimination of leprosy, as targeted in December 2005. However, India still has the largest number of leprosy cases, according to WHO in 2016. In Uttar Pradesh’s Bhawanpur Chauthar village, Gulavchand, is affected with leprosy. He talks about how this disease is more than an ailment. It has created stigma and discrimination for his family.

“My father has been sick for 20 years now. People from the villages taunt us. We are four brothers and 2 sisters, and no one is getting married. We couldn't study as well”, said Pushpa, daughter of Gulavchand. India has more than three million people with deformities caused by leprosy. People suffering from leprosy are ostracized from the society. No matter how redundant it sounds, they blame it to be a ‘sinful disease’. Many people with leprosy don't consider going to hospitals or dermatologists because of the social stigma attached to it. When our community correspondent Ani, asked Pushpa, what her neighbors are saying, she said, “your father has this disease of ‘untouchability’. Don't stay with us, don't come to our house. And you will not get married.”

Gulavchand’s plight started with a small patch on his skin when he was in Mumbai. He was later denied from working and people refused to give him work. Instead of going to a doctor, he ‘consulted’ an ojah and took medicines from him. Regardless to say, Gulavchand’s family spent a lot of money on his medication. “They are saying that this happened because of black magic and I’m worried”, says Phulpati Devi, wife of Gulavchand.

The Central Leprosy Division of the health ministry reported that 135,485 new leprosy cases were detected in India in 2017. There are at least 13 archaic, affiliated laws that discriminate against people affected with leprosy. One of them until recently said that it could be used as a ground for divorce. The Lok Sabha passed the Personal Laws Amendment Bill, 2018 bill to remove this ground. A draft bill in 2015 was made to seek leprosy as a medical disease, and to eliminate discrimination against people affected by leprosy and use of the word 'leper’.

In India, leprosy is an ancient disease and the challenge is not just to eradicate leprosy but also to deal with the ingrained stigma and myths which come along with it.

Video by Community Correspondent Anil Kumar.

Article by Grace Jolliffe, a member of the VV editorial team