Please call me Sailendra. I was born in an isolated leprosy colony on Dec. 2, 1976. I contracted leprosy at the age of seven. My parents have deformities from the disease, but I was able to take multidrug therapy (MDT) medications soon after diagnosis. I was lucky to be cured before deformities could affect me.

In the colony where I grew up, everyone was struggling for survival. People had wounds, sometimes with maggots, and my father would dress these wounds. We had to depend on alms, and I still remember picking through them, trying to find candies and biscuits.

Today, I am educated, independent, and earn sufficient income for my family, but a successful life for myself is joyless when the family and community that raised me is so vulnerable. In 2004, I decided to do what I could to help. I gathered youths from a number of leprosy colonies and together we collected 1 rupee per family per day for colony development. In a year, we raised 150,000 rupees from 20 colonies. This success boosted everyone’s morale, and raised hopes for change. Our state was recognized as the first in India to have a group of youth leaders composed of persons affected by leprosy. Later, in 2009, the organization Atma Swabhiman (Self Dignity) was established for and by persons affected by leprosy.

World Leprosy Day 2021. People from 20 self-settled colonies marched to raise awareness of issues faced by persons affected by leprosy.

Because of the COVID-19 pandemic, the economic situation of persons affected by leprosy has deteriorated. Alms income from begging has declined and menial work is no longer available. The situation has forced us into asking for support. We are thankful for the individuals and organisations who have generously supported us, including the Jago Foundation and the Sasakawa Health Foundation. 

To end discrimination, we need public participation of persons affected by leprosy throughout society, and for some geographical areas in particular, sensitization, education, and awareness-raising at the grassroot level. Equally important is to address and overcome the self-stigma and paranoia prevalent in the minds of persons affected by leprosy. Internalized consequences of discrimination are not given enough attention.  

My philosophy of life is to serve humanity by promoting life with dignity and inclusion in mainstream society. Love, affection, trust, and support of fellow persons affected by leprosy—and especially generous responses and support from friends, family, and well-wishers—motivate me to keep going. Every step forward fills me with hope that we will achieve our goals.

Sailendra Prasad Shaw
Social Worker
Atma Swabhiman, India

Represented and led by people living in self-settled leprosy colonies, the organization Atma Swabhiman (Self Dignity) is committed to facilitating social inclusion for persons affected by leprosy and their families. To donate, contact atmaswabhiman (at) gmail (dot) com.
Twitter: @atmaswabhima

NO. 102 MARCH 2021