WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy


Foundation aims to help people on a path to self-reliance and dignity.

Skills training at Kusth Ashram Viklang Sahayata in Dehradun, Uttarakhand

The Sasakawa-India Leprosy Foundation (SILF*) was launched in October 2007, with an endowment of US$10 million from The Nippon Foundation, to create opportunities for people affected by leprosy and their family members. We asked SILF's Executive Director, Dr. Vineeta Shanker, for a progress report.

What is SILF's mission?

SILF's mission is to make itself irrelevant. In other words, we would like to see an end to the stigma that denies people affected by leprosy and their families equal access to education and income-earning opportunities and their rightful place in society, and that also erodes their confidence and abilities.

How well-known is SILF?

It's a new foundation that started its program activities just last year. I think in the field of leprosy SILF is well known, not because of what it has done but because it is an initiative of Mr. Yohei Sasakawa, whose work in the area of leprosy eradication is recognized the world over.

What kind of feedback have you been getting from persons affected by leprosy?

The reaction has been mixed. On one hand, there is excitement that funds have been given by Mr. Sasakawa for their upliftment. On the other hand, there is disappointment that the funds are not going to be available as grants and gifts, but are going to be linked to a livelihood-generation initiative with oversight and monitoring by SILF and The Nippon Foundation. Moreover, those who were hoping to get assistance for the education of their children are even more disappointed as, in the initial phase, SILF decided to concentrate on livelihoods. We are now in a position to introduce a small education program, which will hopefully begin soon.

What has been the response of the business community to SILF? Are you making any headway encouraging employers to think about hiring persons affected by leprosy and members of their family?

We have not yet approached them in any systematic way, but overall there is interest and sympathy and a willingness to offer support. We will have to see how this translates into funds or training or employment in the coming months when we hope to approach them about their greater involvement.

SILF asked career counselors to conduct interviews with colony residents to find out more about their needs and desires. What did you learn from this?

One of the major findings was that, although the young people had high aspirations, they had few life skills to translate these into reality. They were not well informed about the choices and the demands that different kinds of vocations and professions entailed with respect to technical, interpersonal, communication and emotional skills. Clearly, they need both motivational and career counseling to be successful in life. Also, they had all internalized the stigma against people affected by leprosy and their families and carried a sense of rejection and isolation.

In funding livelihood projects, what parameters has SILF set?

For the time being, SILF has decided to concentrate on the population living in selfsettled colonies that are within the National Forum [of persons affected by leprosy] network. One of the guiding principles of our livelihood funding is that the proposals have to come from the people themselves. Often these proposals are just ideas of what people would like to do. We take these seriously and try and develop them with the persons concerned into viable and sustainable projects.

Initially there was an influx of proposals, not all of which were workable. To help bridge this gap we started organizing training for project identification, development and proposal preparation.

To ensure that there are concrete results from this training we insist that the workshop facilitators help develop at least one proposal from each of the participating colonies into a detailed project outline with market feasibility assessment and a business plan. This is done as a follow-up to the workshops.

What sort of proposals have you been receiving?

By and large, the demand is for starting simple and traditional activities such as livestock, tailoring, and candle-making. Eventually we would like to work toward activities that respond to the demands of a changing economy, and expect to include non traditional activities.

Please give some examples of recent projects SILF has funded.

Recent beneficiaries include 15 people from Hanuman Nagar Kusth Vasahath, Thane, Maharashtra, for buffalo rearing; 10 women from Sri Sai Ram Avtaar Kusth Sewa Samiti, Indore, Madhya Pradesh, for saree retailing; and 8 people from Swami Vivekanad Kusth Ashram, Bareilly, Uttar Pradesh, for battery renting. As a lot of rural and semi-rural areas do not have electricity, people rent batteries for operating TVs or for family functions. It's a lucrative business.

"We focus on eradicating stigma through social and economic rehabilitation."

SILF has teamed up with well-known fashion designers. How did this come about? And what has resulted?

One of the Trustees of SILF introduced us to Ms. Rathi Jha, former director general of FDCI [Fashion Design Council of India]. Through her contacts, SILF was able to meet and discuss various possibilities for improving the products made by people affected by leprosy with wellknown fashion designers such as Ritu Kumar, Anju Modi, David Abraham and Ria Ali.

One of the first initiatives was to persuade these designers to use some of the material woven by the leprosy colonies for their highfashion clothes as their response to the products was very positive. Some of them did just that and displayed these clothes at a fashion show earlier this year. This got us some visibility, but not many orders. Many designers are keen to help improve the weaves, colors and designs of the textiles and we are in the process of working out how to do this, given their hectic schedules.

Where do you think SILF's priorities must lie?

We focus on eradicating stigma through social and economic rehabilitation. Within this mandate we have prioritized livelihood funding, but there are other equally urgent needs that people affected by leprosy and their families face, especially in the field of education and capacity building.

We are now going to begin our educational funding. We would like to initially focus on vocational training for youths who have had some schooling but are now at a loose end, without jobs and without skills to start something on their own. We are not going to be running the training ourselves, but helping people to tap into vocational opportunities.

Early days yet, but what has been SILF's biggest achievement?

The biggest achievement has been the acceptance, on the part of people affected by leprosy, of funding as a means to start on a path of self-dependant and dignified livelihood generation. This is clearly reflected in their agreement to treat the funding as a loan to be returned to the community so that others can also benefit from the same kind of opportunity, and not as a handout meant to be used for consumption purposes.

What is the biggest challenge SILF faces?

At this stage in our development we have to contend with a certain amount of doubt and distrust about SILF's intentions and processes among colony leaders, but I am confident that as we work together these issues will be resolved over time.

How would you characterize the situation of persons affected by leprosy in India today?

It is difficult to give a generalized answer to this. The situation varies from place to place. On the whole, the stigma against the disease and people affected by it is less than it was 25 years ago. But there are wide differences, and in some remote areas people still have to struggle against intense social rejection.

Do you think SILF can make a difference?

Of course we can! Not merely in terms of funding a discreet number of projects as we are doing but in helping create that sense of confidence and empowerment that will enable people affected by leprosy and their families to pursue their dreams and see themselves -- and make others see them -- as an integral and equal part of society.


INTERVIEWEE: Dr. Vineeta Shanker
Executive Director Sasakawa-India Leprosy Foundation

* For more information about SILF, visit