When we’re packing the undies and stocking up on meds, rolling the T-shirts and digging out the passport, we’re usually buzzing to travel to some exciting new place. We imagine the stunning views we’re going to see, the adventures we’re going to have and the culture we’re going to get stuck into. But sometimes that culture has a sad side we didn’t expect to see.
I recently pulled my backpack on and ventured to the depths of east India with international charity Lepra. As a first-timer to India I wanted to experience it all, but I wasn’t there to hike the Himalayas or lounge on Goa’s beaches; I was going to meet India’s ‘forgotten people’ in Odisha and Telangana – those who have been hidden away because they have been affected by leprosy.
Visiting a leprosy colony
Leprosy colonies were something I was pretty sure only existed in stories like Game of Thrones, but it turns out they’re very real. The two I visited were on the outskirts of towns, hidden away and made up of mud huts. Inside I met people who had experienced leprosy years ago and were sent away by their families who thought they were cursed. Many of the residents have never seen those families again.
Basha is 65 years old, and told me he was thrown out of his family home when he at 20 he started to develop small patches of numbness on his skin. This can be a symptom of leprosy and is what brought Basha to the colony, where he’s lived ever since, and although he told me he has several brothers and sisters he said he’s never seen them again.
Nagama was just 25, the same age as me, an age where she could have been partying in Ibiza or backpacking through Bolivia had she been born elsewhere. Instead she was living in the colony, expecting her first baby.
She hadn’t suffered leprosy herself but her mother and grandmother had lost their sight as a result of delayed treatment. Nagama couldn’t have them move in with her, but was so worried about them living in the colony that she left her husband and moved into the colony to care for them. Her husband has since remarried and Nagama will raise her baby in the colony. She told me she’s just happy to be able to look after her family.
The lack of food, clean water and the cramped conditions don’t seem ideal for raising a child, but the charity sends health workers to visit the colony each week to help with any medical care required. If it weren’t for this service, the residents would have to walk over 5km to reach the nearest hospital. Lepra will also help Nagama go to university when she’s ready, so she’s got a chance at creating a life outside of the colony
Life in a leprosy colony
Those in the colony all have similar stories that share the common themes of disease, poverty and prejudice. They’re made worse by the fact that there is a cure for leprosy and this life could have been avoided. It turns out that very few people are aware leprosy still exists and even doctors struggle to diagnose it. By the time many of these people had been diagnosed they had already lost fingers, toes, even their eyesight, and were made to live in these run-down environments.
Initially, to me, the colony looked like a lonely place to live, but the people have formed incredible bonds and made it their home. They have a collective stove they take turns to stir, a designated wash area and a makeshift altar they use to pray. Some have even found love with one another and have created their own families and a community free from the judgement they face on the outside.
The 40 plus families in Sudpada colony even have some small children. They run around the dirt and play amongst the discarded bricks while their parents and grandparents go out to beg. Kreushna, the colony’s president, says the stigma around their leprosy disabilities is so strong that villagers will shun them and they can’t find jobs.
Instead of working, he says they operate a shift system for begging; like workers in a supermarket they’ll swap each other out of various locations and secretly hope they’ll be allocated the morning shift when it isn’t so hot.
Another way to visit India
This is a side of India I had never expected to see. The rice paddies and valleys had me snapping away with my camera, the local dance performances I couldn’t wait to try myself, but meeting the people with such sad stories had me doing nothing but listening and wondering how to help.
Before this trip I’d been on my fair share of backpacking adventures and had met many locals along the way who’d shared their stories with me. These gave me a little slice of life in that country, but looking back they were always happy stories – never had I gained such insight into true poverty and pain. These are the stories that really matter and make us all the more grateful for the things we have when we’re back home.
They also taught me that it’s not all about pretty landscapes and adrenaline activities when you’re travelling; sometimes it’s the small conversations with amazing people that make the lasting memories.