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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

AMBASSADOR’S JOURNAL: A Visit to Uttar Pradesh

The Goodwill Ambassador attends a conference of people affected by leprosy in Lucknow, India, and tours a nearby colony where most residents make a living from begging.

Stopping to chat with colony residents

Colony leader Om Prakash with family members


At the beginning of March I attended a regional conference in Lucknow, Uttar Pradesh, of India's National Forum of persons affected by leprosy. The Forum had its origins in a conversation I had back in 2005 with Dr. P.K. Gopal, the president of IDEA India and also now the head of the National Forum. We agreed that if people wanted to recover their rights and improve their circumstances in life, then they would have to stand up and act. So long as they continued to live in colonies beyond the social mainstream, begging for a living, then the outside world's attitude toward them wouldn't change, and discrimination wouldn't go away.

Since its founding in 2005, the National Forum has developed nationwide, nurturing leaders in each of India's more than 700 selfsettled colonies, connecting them at state level, and working for the integration and empowerment of people affected by the disease. The conference in Lucknow, which was held on March 1, was the third regional gathering to date, and attended by over 300 colony representatives in India's 10 northern states.

The chief guest was Uttar Pradesh's health minister, Shri Anant Kumar Mishra. He told the audience, "Tomorrow I have a meeting with the chief minister of UP, so if you have any requests, then give them to me during the course of today." (For more details, see page 2.)

Common to all delegates was the desire not only to better their own situation but to ensure there are good prospects for the next generation and the generation after that. "It's not charity we want, but opportunity," best sums up their outlook, I feel.

With regard to that, I am hopeful that the Sasakawa-India Leprosy Foundation will make a difference. The foundation, which formally began operations last year, took the opportunity of the conference to announce that it has approved its first 10 grants of financial aid to people affected by leprosy for business development. Next it plans to award scholarships for higher education and vocational training.

While in Lucknow, I visited the Adarsh Kushta Ashram, a self-settled leprosy colony about 40 minutes' drive from the city, not far from the airport. This colony, established in 1974, is home to Om Prakash, leader of the nearly 60 colonies found in Uttar Pradesh. The colony consists of 52 households, or about 250 people, of whom some 90 are persons affected by leprosy. Around 100 children go to mission-run boarding schools in Varanasi and elsewhere.

The colony is built on public land, with residents living in concrete tenements around the perimeter of the colony, leaving the central area open. I was told that 90% of the residents making a living from begging outside temples, restaurants and shops.

I learned that they each carry a certificate to show that they are residents of the colony, so distinguishing them from other beggars found on the streets. The residents earn an average 50 Rupees a day. They pool their earnings and distribute them among the community.

Overall, this is a well-organized colony. It is clean and tidy, and has its own water supply. But the fact is, most residents beg for a living, and many children are going to mission schools rather than public schools. It shows the challenges that remain before these residents and others like them can become part of the social mainstream.