The Leprosy Mission is the Charity Partner for our flagship Ideas for India conference, part of the annual India Week.
While leprosy has been curable since the 1980s, existing laws surrounding the disease remain stuck in the 1890s.
Did you know there are still more than 100 laws in India that discriminate against people affected by leprosy? While these laws are still in existence, discrimination against people affected by leprosy cannot end.
Since ancient times, society has stigmatised people affected by leprosy. Classic images of people affected by leprosy are portrayed throughout history in art and literature. A disfigured person with severe skin lesions draped in tattered clothing and bandages. Throughout history the lone figures are depicted as isolated from society, begging for alms their only means of survival. This portrayal of physical uncleanness and moral impurity has somehow justified centuries of ostracism and discrimination.
Leprosy should not even exist today as it has been completely curable since the 1980s. Although only mildly infectious, it thrives where there is overcrowding, poor sanitation and malnutrition. Leprosy is a disease of poverty and over half of all cases treated globally each year are found in India. There are even 750 leprosy colonies in India today, a relic to a time when leprosy was incurable.
Yet despite being entirely curable, people affected by leprosy are often excluded from society. A leprosy diagnosis can lead to divorce, losing a job or business or homelessness. Yet a day after taking the antibiotic cure a person is no longer infectious and is a threat to no one. This demonstrates the power of fear, shame, ignorance and unfounded age-old beliefs.
It is this unfounded fear that led to existing laws that still discriminate against people affected by leprosy. They were made in the 1890s at the time of the British Raj in India. The laws mean the police can still detain beggars affected by leprosy. They prevent people affected by leprosy from standing for election and disqualify them from doing certain jobs. Yet despite leprosy being incurable at the time, there was still overwhelming evidence to show they were never needed. Alas, centuries of prejudice defeated medical evidence and logic.
India’s state laws discriminating against people with leprosy, and even people cured of leprosy, are a product of The Lepers Act of 1898. Yet the report of the Leprosy Commission in India in 1893 clearly stated: “The amount of contagion that exists is so small that it may be disregarded. And no legislation is called for on the lines either of segregation or of interdiction of marriage with lepers.” Instead voluntary isolation was recommended in the absence of a cure.
Even after independence in 1947, new discriminatory laws were made. Leprosy was recognised as a ground for divorce. People affected by the disease were prohibited from entering marketplaces and libraries. They could not be appointed as members of university academic boards.
Thanks to advocacy efforts, of which The Leprosy Mission has been at the forefront, 33 laws have been repealed or amended over the past five years.
Head of Asian Partnerships at The Leprosy Mission Great Britain, Louise Timmins, said: “My colleagues in India have campaigned for many years for a constitutional right to dignity and equality to be fulfilled for every person affected by leprosy.
“This outdated, and never needed, legislation needs to be consigned to the history books.
“Because of the prejudice that still surrounds leprosy in India today, awareness raising is a major part of our projects. I have spent time with many people who have experienced discrimination after someone sees that their body has been damaged by leprosy. These people are now being empowered to stand up to this terrible and unfounded prejudice. They’re being helped to understand their rights and challenge discriminatory laws and the attitudes behind them. This is at local, district and state levels.”
One of these people is Sharidah, pictured above, who lives in Chhattisgarh in India. Sharidah is a Champion for Zero Leprosy. When Sharidah began to show signs of leprosy, her husband abandoned her. She also was forced by her fellow villagers to leave her community due to the stigma. But after receiving advocacy training, Sharidah is now a Champion for Zero Leprosy. She’s also the Secretary of her local self-help group, coordinating advocacy activities for 4,000 people.
Sharidah’s biggest success has been leading a campaign to secure a piped water supply to her leprosy community. She liaised with the local government and took direct action to make sure that the project was completed.