'People living with leprosy have one common demand these days – a livelihood and a life of dignity'

Mr Vagavathalli Narsappa is the Chairman of the National Forum for Leprosy-Affected People in India. He recently visited the UK where Madhavi Sakuru caught up with him to discuss his life and his campaigning work. 

What’s the main challenge for people affected by leprosy in India today?

“Lack of economic opportunities for themselves and for their children mean people with leprosy often have to resort to begging, which is neither the way out of poverty, nor the way to remove stigma. People in leprosy colonies usually live on the fringes of towns and cities, in dehumanising conditions surrounded by poverty.”
Vagavathalli

What are the day-to-day issues of living with the disabilities caused by leprosy?

 
“Leprosy-related disabilities pose particularly dangerous challenges. When there is loss of sensation in hands and feet, people are susceptible to injuries that they might otherwise have avoided. These injuries can turn into bleeding ulcers and sores that are in need of regular dressing and care. ”
Vagavathalli
 

Can you give examples of discriminatory legislation and its effect?

 
“There remain sixteen laws in India that continue to discriminate against people affected by leprosy. Leprosy is still a legal ground for divorce and there is also a law which disqualifies us from running elections for village and town councils, or hold any other public offices. Advocating for removal of these discriminatory laws is an important part of our fight against injustice. ”
Vagavathalli

When you meet with people diagnosed and living with leprosy, what is it that they say?

 
“People living with leprosy have one common demand these days – a livelihood and a life of dignity. They do not want to live begging at traffic signals, temples, churches or mosques. They want decent jobs for their children and for themselves; they want to learn skills so that they can earn wages for their day’s toil like everybody else.”
Vagavathalli
 

How does Lepra help in your work? 

“An important way in which Lepra helps me is by providing opportunities to participate in local, national and international forums where I can voice the concerns of my people. I was invited to the UK in January 2013 to speak at the launch of the global appeal to end stigma and discrimination against people affected by leprosy. This provided one of the best opportunities I have ever had.  ”
Vagavathalli

What is your message to the people who support Lepra’s work?

 
“I am deeply grateful to all the people who support Lepra’s work. We have come a long way in our fight against leprosy. Please help us through the ‘last mile’ by supporting the total elimination of the disease and making it possible for the leprosy-affected to lead a life of dignity and confidence.”
Vagavathalli

Finally, on a more personal level, what are your hopes for your children?

 
“My youngest daughter, Meena Rani, is at University. I hope that one day she will be able to join me in campaigning and advocating for the rights of people with leprosy.  I hope that she takes my vision forward and becomes a leader of her generation, making leprosy history not just in India, but worldwide.”
Vagavathalli