Empowering the leprosy affected

CHENNAI: Always carrying the stain of a ‘sinner’ and historically ostracised, leprosy affected people even today face stigma and isolation in the public domain. Though cured of the disease, many are forced to live with their disabled limbs, accompanied by numbness, which perpetuates ulcers, preventing them from getting hired for jobs. Pushed to penury and deserted by their families, many take to begging.Now, that story is bound to change. In the past 22 years, a total of 1,078 lepers were economically empowered through Self Help Groups, thanks to the efforts of this one man – Shiva.Shiva (57) is a non-medical supervisor at the office of Deputy Director of Medical Services — Leprosy. Since his job exposed him to the economic difficulties faced by the leprosy affected, he was inspired to do something for them after office hours.Shiva said, “Since I was a government employee, I could not work independently. So I started looking out for NGOs or other charitable organisations with whom I can work as a volunteer. After a long search, Shri Ramakrishna Math came forward to support this initiative. Without their consistent support, it would not have been possible for me to reach out this many number of people.”Chandrasekar (54) was affected by leprosy 25 years ago. Today, he is economically independent and runs his own small cut piece business and works up a saving of Rs 10,000. He is thankful to the SHG initiative by Shiva and the Math, which he calls his second home.He said, “I was once a rickshaw puller and my wife worked as domestic help. We had two children. After the disease hit me, slowly I became very sick and pulling the rickshaw became very difficult. After I was cured, nobody wanted to hire me. I felt I was becoming a burden to my family. Today, after I joined the SHG run by the Math for people like us, every month I make a profit of `1,000, which is a big thing. I am able to support my family.”Shiva said, “Due to the stigma, we carefully choose the small trades in which these people can be trained. Selling homemade food products have failed because people do not want to buy from these people.”“So the SHG revolving fund was given for businesses like selling plastics, cut pieces, clothes and sometimes, tea packets. We also look at the trade they were involved in before they got infected by leprosy. If someone was an iron man, we buy them iron boxes, which they can rent out and make some money. We also buy motor-fixed tailoring machines for people who know tailoring already.”Daniel (76) and his wife were both affected by leprosy in their early twenties. Through the SHGs, the couple is now selling Assam Tea and cut piece clothing. Daniel said, “I was basically a weaver, after the disease I couldn’t do much work. I used to sell ever silver vessels door to door. Now in our old age, after joining the SHG five years ago, we are actually able to double our monthly income. We now make a monthly profit of  Rs 2,000 to Rs 2,500.”The SHGs work thus: First, the beneficiary will be given things worth about Rs 500 as per his expertise to sell, and pay back Rs 100 a month. If he is able to do it consistently for  a few months, he will be joined in a cluster of three or four and later made to join the SHG.Every second Saturday, they have a meeting of the SHG members at the Math campus where they share their success stories and problems. They have 12 SHGs with 120 members till date. Daniel said, “These meetings really help us a lot, to meet other people like us and realise we are not alone. We also share our problems and learn how better to do the business.”Shiva also raised other pertinent issues regarding disability pensions for the leprosy affected. He said, “To certify the disability level of the blind, they have ophthalmologists and for the deaf and the government had appointed an ENT specialist. But the disability level of the leprosy affected person is only certified by an orthopaedician.”“We request the government to allow a leprologist, who understands their issues better, to be authorised to certify their disability. Due to the fact that it is presently conducted by an orthopaedician, who certifies the disability of leprosy-affected people a mere 30 to 45 per cent, this disqualifies them from being eligible for a disability pension. A disability pension of Rs 1,000 a month is awarded only to those who have a disability of 65 per cent or above.”