New Delhi: In the male leprosy ward at Shahdara Hospital in east Delhi, no one is aware that World Leprosy Day is on January 31. The ward wears the same bleak look as on any other day. The patients are quiet as the nurses bustle around – men with no legs or no arms or no nose, or a combination of these disfigurements.
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Every day of the week leprosy patients struggle to get by without limbs and without arousing fear and loathing in healthy people.
Outside the ward, Vivek Yadav and his father Atul, who is in a wheelchair because his legs were amputated years ago, are waiting for a technician to adjust the wheelchair.
"My father got it very early. For as long as I can remember, he had no legs. He was always on the ground, using his arms to move his torso. We could never take him out. It was when we came here that we got a wheelchair for him," said Vivek.
The hospital is run by the Leprosy Mission Trust India to provide a place where patients can come knowing they will be treated and, moreover, treated with kindness. In a room adjoining the ward, an outpatient Yogesh (he uses only one name), a tall, slim, 30 year old, is waiting for his medication. He was stunned when doctors told him three years ago that the numbness he had been feeling in his hands was leprosy.
Plastic surgery has helped partially straighten his hands but he is unemployed because he is a mason yet he cannot lift anything heavy. His wife left him because she was "disgusted' by the disease. "I live with my brother and do odd jobs in the neighbourhood when I can. I want to work but it's difficult," Yogesh said.
Leprosy is one of the oldest diseases recorded in the world. A contagious bacterial infection transmitted via contact with respiratory fluid, it targets the nervous system, especially the feet, hands and face. When detected early it can be cured. But the powerful stigma attached to it means that people delay going to the doctor inordinately. The delay results in the clawed hands and suppurating sores that the disease is known for.
More than half of new cases of leprosy each year in the world are diagnosed in India — according to the World Health Organisation, 125,785 out of 213,899 new cases worldwide in 2014 occurred in India.
Apart from helping those with the disease, the mission has been trying to educate Indians about leprosy so as to lessen the social isolation of patients. The diagnosis of leprosy falls on a person like a biblical curse. The time when sufferers used to have to wear bells to alert others that they were coming has gone but in rural India, villagers force them out and in urban India, they are forced to live in informal settlements called 'leper' colonies where conditions are worse than the worst slums.
Many of the patients at Shahdara Hospital are from the nearby colony. One of them is Mohammed Hussain, who looks 60 instead of 42. He begs at the traffic lights outside a plush, private hospital up the road every day. In coming to the hospital to talk to Fairfax Media, he says he has lost a morning of begging and wants to be compensated for his loss of income.
Poor sanitation and overcrowding in the colonies where people like Hussain live makes those who do not have the disease more susceptible to getting it.
To mark World Leprosy Day, the trust has arranged for a day out for about 20 patients. Apart from having a meal, they take a ride on the Metro, a simple thing they have never done for fear of being stared at or thrown off.
They have ridden along the entire length of the line from Shahdara at one of the capital to the other end in the west to Rohini. On the longish journey, the Mission staff spoke to passengers travelling in the same carriage to make them realise that discrimination is cruel.
The mission is currently lobbying the Indian government to repeal an 1898 law which permits discrimination against leprosy sufferers, including segregation. More than a dozen of India's 29 states have repealed the law but it remains in the others.
"We have drafted a new bill, Eliminating Discrimination Against Persons Affected by Leprosy 2015, which we want the government to pass as soon as possible to outlaw all forms of discrimination," said Nikita Sarah, head of advocacy at the trust.
Jacob Oommen, a team leader with the Mission, has heard too many horror stories to be shocked any more.
"Banks refuse to open an account for them, bus conductors throw them off, shops won't let them enter. They are shunned all the time. It hurts them deeply."
