As many as 120,000 people are diagnosed with leprosy each year in India, and problems associated with the disease continue to afflict the country. Various programs to eliminate discrimination have been implemented. Signs are emerging that the deep-rooted stigma associated with the disease is being overcome.
The Situation in India Today
India is home to 1.2 billion people, making it the second-most populous country in the world. More than 120,000 new cases of leprosy are reported each year, accounting for 58% of global leprosy cases. According to estimates, 12 million people affected by leprosy are living in the country. Some have been driven away from their homes and settled in leprosy colonies, where most of them depend on begging to survive.
The Sasakawa India Leprosy Foundation (SILF), based in New Delhi, seeks solutions to problems associated with leprosy in India. Since its establishment in 2006, SILF has taken steps to enable people affected by leprosy to lead a life of dignity, rather than having to beg for a living.
Provision of Small Loans and Know-How
Beggars can often be seen at temples, train stations, and bus stations in India. Some of them are people affected by leprosy. Unable to find work because of the social stigma attached to the disease or their physical deformities, they must resort to begging to survive. Their children are unable to go on to higher education because their parents lack money, thus trapping the next generation in the downward spiral of poverty.
In order to break this vicious circle, SILF began offering small loans to individuals setting up small businesses in 2008.
As part of this process, SILF conducts capacity-building training among colony residents to help them develop business plans and explain the livelihood program to them. Once a business proposal is received, SILF staff, mentors from non-governmental organizations, and state leaders of leprosy communities visit the colony. The people providing assistance are involved from outset through to the final stage, assisting in the formulation of a business plan, making assessments, and helping beneficiaries to solve problems faced during project implementation. In this way, the process does not end with the granting of the loan.
In Madhya Pradesh, a state in central India, a group of women received a small loan and now their business is running successfully. One of the beneficiaries, Hira Bhandari, recalls how she felt when she first heard about the loan: “When SILF staff visited the colony, my family had no money at all and no way of making a living.” The situation was the same for the other women. It was the first time for them to hear about the option of taking out a small loan, as explained to them by SILF staff and the president of the Madhya Pradesh Leprosy Leader Committee, Sarang Gaidhane.
“We were told that the money borrowed from SILF had to be repaid, but it would go to the colony union and not to SILF,” Bhandari recalls. “In other words, the seed money and interest would remain with us in the colony. Knowing that this would benefit all colony residents heightened my desire to take part in the SILF livelihood support program.”
The women in the group held a series of meetings to discuss their plans. They ultimately submitted an application for a business to make and sell saris, the garments traditionally worn by Indian women. Following this, they received training in embroidery from SILF and other organizations, which allowed them to improve the quality of the products. The women were also taken to various markets to help them acquire more sophisticated marketing skills.
The women initially felt anxious because they had limited experience dealing with people outside the colony. They were worried about how they would be treated and whether anyone would buy their goods. But they mustered up the courage needed and ultimately succeeded. Income was not the only thing they acquired, as one woman explains:
“Until then, we had lived in our own little world. We were discriminated by the people outside the colony, who avoided us. Even our own relatives shunned us. But when people saw us working, they realized we just needed the right chance and guidance and that we had resorted to begging because we had no other choice. It changed the way they looked at us. We’re now treated fairly and feel satisfied with our lives.”
When a project succeeds, it is noticed by people inside as well as outside the colony. The sari business transformed the way people in the colony thought. And in time, people in the surrounding communities also changed as a result of their direct and indirect contact with those who rebuilt their own lives thanks to the sari business. This marked the beginning of the end to discrimination. SILF’s livelihood program is now implemented in 14 states and a total of 99 projects are currently being funded.
Uplifting lives and Raising Awareness
Another important initiative undertaken by the Nippon Foundation in India is building a network of people around the country affected by leprosy through the National Forum India. This organization works to empower people affected by leprosy by raising awareness about their rights, and works with the central government, local governments, and NGOs to improve living conditions at leprosy colonies.
Government and NGO support alone cannot change the situation of people affected by leprosy. The Nippon Foundation encourages people affected by the disease to be the main actors in identifying and prioritizing the problems they face and working toward finding solutions in areas such as housing, pensions, employment, and education.
Chikako Awazu, the Nippon Foundation’s project coordinator in India, says that among the many programs she has been involved in, one in particular left a deep impression on her.
“In Bihar State, in northern India, negotiations are under way to raise the pension paid to people affected by leprosy. At the initial meeting with government officials, which was joined by Yohei Sasakawa, the chairman of the Nippon Foundation and WHO Goodwill Ambassador for Leprosy Elimination, the state leaders of people affected by leprosy in Bihar hesitated to sit at the same table with the ministers and high officials of the state government. This wasn’t surprising, considering the self-stigma they have developed due to the discrimination they had encountered throughout their lives.
“The Health Minister asked them to provide an exact figure for the number of people living in leprosy colonies who are entitled to a pension. In the following two weeks, the state leaders conducted a comprehensive survey of people living in leprosy colonies in the whole of Bihar. The next month, when they submitted the survey data to the health minister, they didn’t think twice about sitting in the front row. Their faces glowed with confidence. It was then I realized that people have the potential to change.”
The negotiations that began in 2010 are continuing today. There is a good chance that a new pension scheme will be introduced exclusively for people affected by leprosy. This would replace the current 200 rupees a month they receive as a disability pension with a much bigger monthly pension of 1,800 rupees.
With each small step forward, more people affected by leprosy will be encouraged to initiate similar undertakings. There may be occasional setbacks and conflicts along the way, but as the successes mount and spread to other regions, India will one day be free of the problems associated with leprosy. With this dream in mind, the Nippon Foundation is continuing its endeavors.