Breaking the stigma

Breaking the stigma

The festival Youth Against Leprosy, organised by Sasakawa — India Leprosy Foundation (S-ILF) in the city recently, welcomed more than 60 students from both leprosy-affected and non-leprosy background. Coming together for the three-day programme, the youngsters put up great performances full of social messages at the COEP campus. CP Tripathi, advisor CSR Bajaj Auto, Makarand Bramhe, a filmmaker, and Vinita Shanker, executive director, S-ILF, were the chief guests for the occasion.

The festival aims to provide a platform for the youth from non-leprosy backgrounds (students from different colleges / universities) to mingle and interact with youth from leprosy colonies. These interactions are aimed to bust myths and create a social bridge between college youngsters regarding leprosy. A youth festival like this helps bridge the ‘us versus them’ divide. The students are connected as a community through the campaign initiative named #YouAreNotAlone.

Appreciating the efforts of the orgaisation and hard work of students, Tripathi said, “It is important to remove the stigma associated with the disease. It is also important that students from such a background do not disconnect from society and pursue their choice of career.” 

We were unaware of our rights
Students from both backgrounds shared their experiences on stage. Jayesh Panchkule (25), an engineering student from leprosy background, said, “In my colony, there are so many people affected with leprosy, including my grandparents. People from nearby areas never appreciated us. In fact, most of them would express their prejudices. But after so many years, there has been some kind of awareness and there has been a slight change in mindset.”

Panchkule is from Trombay. Due to the fear of being judged, his reach was restricted. Leprosy colonies have their schools, and families affected with leprosy send their kids to those schools only.

However, the kids made their way out and now are exploring much more than expected. “We were unaware of our rights. We had this notion that regular schools/ colleges will not allow us to study which is absolutely wrong,” he said. 

Panchkule has experienced both the ignorance and acceptance of the same society. Being the youth of the nation he believes that India is more aware now.

Coming on the same platform having students from a non-leprosy background, he said that he didn’t feel any different. He made some really good bonds at the fest.

The proud moment
Maibam Anjubala (24), a nursing student from non-leprosy background, said that she didn’t find the need to neglect or demoralise people from leprosy backgrounds. 

“When I got to know that we would perform along with students from leprosy background and learnt about their hardships, I felt so proud to be a part of the event. It felt really great to interact and befriend all of them,” said Anjubala.

Being from the medical background, Anjubala never thought that people have such a bad notion about people affected by leprosy. “Now I know much more than earlier. I am from a medical background and I would like to do something that can alter the mindset of society,” she said, adding “Thanks to all my friends who encouraged me to come up with their issues and their success stories to help us understand the need for awareness of leprosy.”

Stigma still exists  
Ruth Tambale, a student of computer accounting, is currently studying in Nashik. Her parents were affected by leprosy and now are completely cured. Her parents were aware of the destiny of their kids, hence, they put Tambale and her brother in the hostel. She did her graduation from a regular college, though she never got the courage to tell them that she belongs to a leprosy background. “I didn’t want to hide the fact that I am from a leprosy background. Though, I never got the courage to tell them. During parent-teacher meetings, my parents never came with me because they knew that it will affect my life,” she said.

There is still a lot of stigma and discrimination against leprosy. People, who are not aware of Tambale’s background, suggest her to leave the colony. They consider it unsafe for her to stay with people who once were affected.  

However, she does not allow all this to affect her. In fact, she has been appealing to all to treat leprosy patients as equals. 

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