V. Narsappa, 9, was detected with leprosy in 1977. The boy from Gulbarga in Karnataka was cured in 1983, but not before the disease had disfigured his fingers and the palms of both his hands.
Though the Leper Act, 1898 — which permitted the segregation of lepers, among other things — was repealed in 1985, Narsappa continued to face social discrimination. He was forced out of his home and had to take shelter in a leprosy colony. Eventually, he married a woman who also had the same disease. The Narsappas now have two healthy daughters, aged 23 and 21. But the family continues to face the stigma of leprosy. So much so that their older daughter had to be married to someone who also has parents who once suffered from leprosy.
There are as many as 16 discriminatory laws against leprosy-affected persons. Dr Brahm Dutt, a senior Supreme Court advocate and a leprosy activist, filed a public interest litigation in the Supreme Court in 2010, petitioning the Centre to do away with these laws. On January 2 this year, the apex court pulled up the Union government, demanding an explanation on why these provisions had not yet been removed.
Last week, three of the respondents — the governments of Delhi and Odisha and the Union health ministry — came back to the court with their replies. However, the apex court was not satisfied with their response and asked the other respondents (ministries of law, social justice and home) to file counter replies as to why the discriminatory laws still existed.
The move to repeal legal provisions that are discriminatory to leprosy-affected persons is not new, however. In 2007, former petroleum minister, Ram Naik, along with some others, submitted a petition in the Rajya Sabha in this regard. Subsequently, an action taken report (ATR) was submitted on December, 2010. But nothing was done to implement the ATR, or scrap these provisions.
“These discriminatory laws make our lives miserable. We cannot live in a housing society, take public transport or even hold down jobs. Most of us are forced to beg. But sadly, the Centre has not yet taken any steps to scrap them,” says Narsappa, who is now the president of the Association for Leprosy Affected Persons.
Dutt, who is a Padma Shri awardee for his work with leprosy patients, says most marriage and divorce laws consider leprosy grounds for divorce, with the Special Marriage Act, 1954, declaring leprosy as “incurable”. In fact, the Dissolution of Muslim Marriage Act, 1939, Section 2(vi) of the Special Marriage Act, 1954, Section 27(1)(g) of the Hindu Marriage Act, 1955, Section 13(iv) of the Indian Christian Marriage Act, 1872 — all state that leprosy is a valid ground for obtaining a divorce.
Says Debashish Banerjee, a Calcutta High Court lawyer, “One can easily get a divorce on the ground of leprosy, even though it’s no longer considered a contagious or incurable disease, and even though the mother legislation has been scrapped. The provisions of the personal laws must be changed immediately.”
Even the Hindu Adoption and Maintenance Act, 1956, Section 18(c), states that a Hindu wife is entitled to live separately from her husband without forfeiting her claim to maintenance if he suffers from a virulent form of leprosy.
That’s not all. Section 12 of the Life Insurance Corporation Act, 1956, allows leprosy-affected persons to be charged premiums at higher rates. And Section 48(2) of the Juvenile Justice Act, 2000, lays down that leprosy-affected children should be segregated for specialised treatment, thereby subjecting them to discrimination in juvenile homes.
With about 15 lakh leprosy patients or three-fourths of the global leprosy population, India has a fairly huge number of people afflicted with the disease. On March 13, 2012, it was stated at a Rajya Sabha session that at last count, there were 2,28,474 new cases of leprosy worldwide, of which about 55 per cent were in India.
“The implementation of the recommendations in the ATR could have helped alleviate their problems to some extent,” says former minister Ram Naik, who is the president of the International Leprosy Union, Pune.
But the government did not do that, allege activists. “The ATR is just a bureaucratic paper. Little or no effort has been made to implement its recommendations,” says Dutt.
Uday Thakar, secretary of the Hindu Kushth Nivaran Sangh, says that the Centre has declared to the Supreme Court that any constitutional change requires the consent of all the state governments. And it is this that has led to the delay in repealing the discriminatory provisions.
However, Rajive Raturi, director of the Disabilities Rights Initiative, Human Rights Law Network, Delhi, says, “It’s the lack of political will that is the actual reason for the delay. Leprosy is very low on the agenda of political parties.”
It’s not just the discriminatory legal provisions that are pending repeal. Activists would like the government to enact a law for the welfare of leprosy-affected people. Dutt says he submitted a draft bill titled Bill for the Welfare of Leprosy Affected Persons in 2003. Needless to say, without political backing, there has been no progress on that front either.
“The enactment of the bill is the need of the hour. We have adopted all means, including the RTI, dharnas and legal recourse, to achieve our objective. But so far it has all been in vain,” Dutt says.
For men like Narsappa the fight for justice will clearly be a long one.