Aiming to eliminate discrimination against people affected by leprosy, Sasakawa-India Leprosy Foundation provides livelihood and educational support and skills training programs. We recently paid a visit to a leprosy colony in Allahabad, Uttar Pradesh State, in northern India, where a group of residents received the SILF’s Rising to Dignity Award in 2013 for their outstanding achievements in carving out a new path to self-sufficiency.
Work as the Path to Economic Independence and Self-Confidence
India has about 700 colonies where people affected by leprosy live. Most of the residents of these colonies, which were founded by individuals driven from their communities, resort to begging because they cannot find work. Although India attained the elimination target established by the World Health Organization of a prevalence rate of less than one in 10,000 people, discrimination against people affected by the disease is still deeply entrenched.*
Sasakawa-India Leprosy Foundation (SILF) was established by the Nippon Foundation in 2006 to help end such discrimination attached to leprosy in India. One of the foundation’s aims is to “End begging in leprosy colonies,” reflecting its belief that work is the key to enabling people to be economically independent and gain self-confidence, and participation in the community is a key to bringing about a change in attitudes. SILF currently oversees 150 livelihood projects in 16 states, all of which are designed to create employment and enable residents to make a living without begging. The projects range from raising poultry to selling saris, battery rentals, electric sign services, and other operations that build on local strengths and customs.
Residents who come up with an idea and wish to obtain funding must first submit a business plan. A study of its feasibility is made by SILF and a local nongovernmental organization. A decision is next made on whether and how much funding should be made available based on a determination of perceived profitability and sustainability. Loans range from 150,000 rupees (240,000 yen) to 300,000 rupees (470,000 yen).
A distinguishing feature of these projects is the system for repaying loans. The repayments are not made to SILF but to a joint bank account managed by the colony leader and a state leader affiliated to the Association of People Affected by Leprosy (APAL)**. The residents of the colony can use money to set up a new business or expand an existing one.
Economic Independence is the Key to Social Integration
The city of Allahabad in Uttar Pradesh State is about an eight-hour, limited-express train ride southeast of the Indian capital of New Delhi. Since ancient times, Allahabad has attracted Hindu devotees because it is the confluence of three sacred rivers: the Ganges, Yamuna, and the mythical underground Saraswati. Each year Hindus from all around the country make a pilgrimage to the location, considered one of the holiest in the land, and every 12 years more than 60 million people come to attend the Great Kumbh Mela Festival. The road leading to the point where the rivers converge, known in Hindi as Sangam, is lined with stalls selling religious goods and groups of beggars squatting.
The Nav Nirman colony lies just off the main road to Sangam along the Ganges River. People affected by leprosy arrived here 60 years ago and became squatters on the land because it was possible to make a living by begging for money from pilgrims. Today 40 families with 70 people live here, but they are in constant fear that the state government will force them off the land.
The colony’s first livelihood project got underway in 2010. A proposal to sell religious goods at a shop for hand-pulled wagons was adopted and funds were granted. The goods, it was believed, would sell well given the proximity of Sangam. Thirteen people came together for the project, including a number with previous business experience as stallholders.
The group leader, Durga Prasad, describes the purchase of a rickshaw, which was instrumental in raising profits. “In addition to the hand pull wagons, we decided to utilize the fund to rent a cycle rickshaw for purchasing the religious goods from the market. We needed to cut procurement costs to raise profits. The grant gave us a way to buy the goods in bulk at a better price. As profits increased little by little, we began to see positive effects in the overall well-being of the colony.”
Rajan, who is in charge of purchasing the goods by rickshaw, explains that the group’s members do not pocket their own profits but pool them in a group account, along with the interest they pay on their loans. Once sales were steady, they got together and decided to use the money they had saved to buy a rickshaw. Rajan proudly notes that incoming profit for the team as a whole rose significantly when the fees for renting a rickshaw were no longer necessary.
The success of the endeavor paved the way for other projects. Another group used some of the money saved to start raising goats. And slowly but surely, the residents of the colony became more business-minded.
Ragu Prasad Yadav, who serves as the leader of the livelihood project, emphasizes that economic independence is the path to freedom. “Though leprosy is now curable, discrimination is still deeply ingrained. People with other health conditions would never be treated like this. You’d never be driven from your village if you contracted tuberculosis, for example. Everybody knows that leprosy isn’t contagious, but their hearts are still closed to people affected by it. To root out prejudice, we’ve got to give people cured of the disease the confidence to live and work in the community. We’ve got to create our own role models, so the next generation doesn’t have to beg and to live in mainstream community.”
Success Hinges on Rapport in the Colony
Of the 150 SILF projects currently underway, two-thirds of them are running smoothly, and about a sixth are doing exceptionally well. The transition from being a beggar to running a business is exceptionally difficult, however. According to Dr. Vineeta Shanker, executive director of SILF, “It’s unimaginably difficult for people who have begged all their life to suddenly take charge of a business. This is particularly true because there is social acceptance of begging, and Indians believe that acts of charity to people affected by leprosy will be rewarded. Seven years have passed since our first projects got underway. Through this process of trial and error, we have come to realize that the success of a project hinges on unity among residents in the colony and the existence of a strong leadership which can bring people together. This is why SILF plans to focus more on the program to nurture leadership among communities in the future.”
Dr. Shanker’s business card is embellished with a lotus flower design. When asked the reason for this, she answers that to end begging in leprosy colonies can be likened to making a lotus flower bloom in muddy waters. “Some people may say ending begging will be nothing short of a miracle, but I am confident we can make it happen. It may take time, but I hope that one day soon there will be no more begging in the colonies, which is our founding goal, and SILF will no longer be necessary.”
Today, about 12 million people in India have been cured of the disease, and about 135,000 new cases are reported each year. It will not be easy getting rid of discriminatory attitudes, but the day will come when the Nippon Foundation and SILF no longer need to safeguard the human rights of people affected by leprosy.
* At the WHO 44th World Health Assembly in 1991, the elimination of leprosy was defined as the attainment by a country of a prevalence level of below one case per 10,000 people. India reached the elimination goal in 2005. However, given India’s enormous population of 1.26 billion, even if that target is reached there will still be a large number of leprosy cases in total. And the number of new cases in 2012 was the highest in the world.
** The Association of People Affected by Leprosy was formerly called National Forum India; the organization adopted its new name in November 2013.
Photographs by Hisayoshi Osawa