India is home to around 60% of the world's leprosy-affected. Despite the fact that most of them are cured, they -- and their children -- are forced to settle in one of 630 leprosy colonies in India. They are not welcome anywhere else. Sanjay Nagar in Borivali, Mumbai, is one such ghetto
A small flight of steps takes me down from the main road to a warren of one-storied tenements in a maze of narrow gullies. This is Sanjay Nagar Rahivashi Sangh of Borivali East, Mumbai. Bhimrao Madhale, the president of this colony, takes me around and I get a quick glimpse of the 320-odd families who reside here. They are, as Madhale observes, a true representation of the ideal of sarva dharma sarva bhav -- all communities and faiths living together in a city that is becoming increasingly polarised and ghettoised.
Madhale adds with pride that all the children go to school and two youths have completed Class X. Opposite the colony is a grocery shop and one that manufactures licence plates for cars. Some of the colony's youth conduct their business here.
All this is a far cry from the wilderness that Madhale staked out 45 years ago. Sheer desperation drove him to choose this plot, opposite the cremation ground. Madhale then was a "nowhere man" -- a leprosy patient who had been cured and discharged from hospital but found society was not ready to accommodate him.
Known from biblical times and mentioned in the Upanishads, leprosy has conjured up terrifying connotations of disfigurement. The stigma thus became worse than the disease. The very word 'leper' was synonymous with a person shunned.
Disfigurement left leprosy-affected people not just socially displaced but also economically disadvantaged, as Madhale found. His training in electrical wiring proved useless because of his disabled fingers. So, using all his wits to survive, he traded in rice and also dabbled in the bootlegging business. Eventually, he and others bought the land in Borivali from the adivasis. Sanjay Nagar, with its leprosy-affected inhabitants and their families, grew against all the odds.
Uday Thakar, who heads the Hind Kusht Nivaran Sangh (Maharashtra branch) and has been active for decades in the field of leprosy elimination and resettlement of leprosy-affected persons, elaborates on the evolution of India's self-settled leprosy colonies. "In the early years of the 20th century, stigma was at its height because there were no known medicines for treatment. In the 1940s, drugs began to be used but in this first stage of the battle the emphasis was on treating patients. There were no systems for their absorption into society. Patients who were discharged from hospital had no option but to settle on any available land because they could not go back to their native villages or towns. The leprosy-affected gravitated towards places and people where they felt at home, and so colonies grew and absorbed the stigmatised. Together the people learnt to handle various problems. Some became aware of their political rights and initiated a move to register themselves in the electoral rolls. Slowly, a process was begun by various organisations to develop leadership in the various colonies and place them before society."
As far as leprosy is concerned, India is one of the worst-affected countries in the world. Today, although leprosy is said to have been eliminated (that is, the prevalence rate of cases is 1 per 10,000 people) India is still home to nearly 60% of the world's leprosy-affected. It is also estimated that at least 11 million people have been cured of the disease in the last decade alone.
As the World Health Organisation points out, the time has come to shift the emphasis from the medical to the social aspect of the disease.
The Sasakawa Indian Leprosy Foundation (SILF), set up in 2005, believes, as its founder Sohei Sasakawa said, that the battle for rehabilitation is like a bicycle. One wheel is medical rehabilitation and the other -- equally important -- is socio-economic rehabilitation.
Vineeta Shanker, executive director of SILF, explains: "Advanced medical treatment means that within 24 hours of beginning treatment a person is non-infective. Yet, leprosy-affected people continue to be marginalised and socially and economically disadvantaged." Science has proved that leprosy is not hereditary and is completely curable, but the stigma persists because of ignorance. Vineeta Shanker adds: "Not many people are aware that the sores associated with leprosy have nothing to do with the actual disease but are the result of secondary infections because patients have lost sensation and are negligent of cuts, etc."
As a preliminary exercise, a survey initiated by IDEA-India under Dr P K Gopal of the National Forum of People Affected by Leprosy (supported by the Sasakawa Foundation) identified around 630 self-settled leprosy colonies in India -- one of which is Sanjay Nagar. Efforts are on to analyse their problems. Under Dr Gopal's stewardship, workshops are conducted to develop leaders who can address colony-specific problems and come together on one platform for experience-sharing and advocacy.
Participants at a workshop organised by IDEA and the National Forum, in Lucknow, in 2008 listed the following forms of discrimination: difficulty in getting family members married, discrimination and rude behaviour at the workplace, difficulty in going to a restaurant or public eating place, and difficulties in opening bank accounts.
A survey by the International Association for Integration, Dignity and Advancement of leprosy-affected people documented the problems the leprosy-affected faced in using public transport. Even entry into places of worship is restricted.
Even doctors are insensitive. This, despite the fact that a horizontal approach has now been adopted towards the disease instead of the vertical approach that confined the leprosy-affected to special institutions. One participant at a National Forum meeting revealed how doctors in general hospitals would not examine them. Often they did not even place the tablets in their hands, to avoid physical contact. A patient described how when the tablets fell on the ground no effort was made to help him. He was left fumbling to pick up the medication with his disabled fingers.
Among the socio-economic problems of the leprosy-affected is a shortage of land, or problems in regularising land on which these colonies settled. The other problem is inadequate civic amenities. Sanjay Nagar, for example, is low-lying. During the floods of 2006 most of the houses were flooded and badly damaged. The colony also faces an acute water shortage.
There is the challenge of the second generation -- children who are discriminated against even though they are not affected by leprosy and would like to have access to education so that they can earn a livelihood with dignity. Most of the children are totally against the practice of begging.
Says Shanker: "SILF aims to enable those cured of leprosy to regain independence and a sustainable means of livelihood through measures that can enhance their skills and abilities to access market opportunities. It also seeks to help the children access education, train them in feasible livelihood schemes and arrange for microfinance opportunities."
Corporates and potential employees are being approached for employment. The aim is to effect a change in attitude whereby leprosy-affected people and their children are given employment not out of pity but because the background of leprosy is totally irrelevant. This would be integration in the truest sense.
(Freny Manecksha is a freelance journalist based in Mumbai)
InfoChange News & Features, October 2008