Kuldeep Kumar, 22, has been refused a driving licence more than once, and he stopped trying after being told, “Lepers should beg, not drive cars.”
“We are the new untouchables in modern India’s casteless society, but unlike other disadvantaged people, laws discriminate against us instead of supporting us,” said Kumar.
He doesn’t even have leprosy but is doomed because he lives in a leprosy colony in East Delhi with his parents, who have leprosy.
Shantha’s (name changed), 21, husband divorced her after he discovered she had been diagnosed and treated for leprosy. “He argued that I could get it again and the court agreed. What could I do? He had the law on his side,” she shrugs.
While India proclaims how its hugely-successful National Leprosy Eradication Programme has achieved elimination status — defined as less than one case per 10,000 population — in 29 states, the lives of leprosy patients are little different from those who lived in the dark ages. Many laws, all framed post Independence, continue to deny them a life of dignity.
People with the disease are legally banned from travelling by train and applying for a driving licence, and leprosy is listed as a ground for a divorce under almost every marriage and divorce law. Some states — Chhattisgarh, Karnataka, Madhya Pradesh, Orissa, Rajasthan and Andhra Pradesh — don’t even allow people with leprosy to contest local body and panchayat elections.
“The Special Marriage Act of 1954 declares leprosy incurable, which is ridiculous. The disease is completely curable, with a person getting cured within six to one year. Even infection stops after the first dose of medicine is taken,” said Dr P.K. Gopal, president, National Forum of Leprosy-affected People, for whom the worst humiliation was when he and other delegates at a conference in Chennai were asked to vacate the hotel immediately after the staff discovered it was a leprosy meet.
Union Health Minister Anbumani Ramadoss is quick to admit that many laws discriminate against leprosy-affected people. “Leprosy is less infectious than the common cold and completely curable, yet laws stigmatise as much as people do. As the nodal agency, the Ministry of Health has already taken up the issue of discriminatory acts/laws against leprosy with the concerned ministries, and we are waiting for their response,” he said.
Even with only 87,206 leprosy cases on record at end of March 2008, India accounts for 54 per cent new cases detected globally. Since 1985, multi-drug therapy given free under the NLEP cures leprosy within six months to a year, but social stigma continues because of the visible physical deformities. If treated in the early stages, no deformities occur, but to treat those with deformities, the ministry announced a grant of Rs 5,000 for BPL families to undergo reconstructive surgery for disfigurements in identified hospitals, which would be given an additional Rs 5,000 for each surgery done.