You’re told you have leprosy, you’re torn from your family and friends and banished to a colony with others like you, there is a simple cure to your mildly-infectious disease, but no one locally knows it and most people globally think your disease has been obliterated for a century. You live with disfigurement and isolation, and you are no longer thought of as a person, but as a feared social stigma. You are a leper in all the figurative connotations of that word. You are forgotten. Add insult to injury, you are referred to by the world as a leper, which is the most derogatory term possible to call a person with leprosy.
When Watts of Love Founder and CEO, Nancy Economou, and her brother, WOL’s Creative Director, Kevin Kuster, along with Watts of Love volunteers, stopped unannounced at a leprosy colony at the end of their earthquake relief trip to Nepal in 2015, there was so much open-hearted elation and welcoming from the residents that the WOL team wanted to do what they could to help them. The obstacle on that trip was that they only had two lights left out of the hundreds they had brought with them.
What they saw wasn’t just people with leprosy who needed lights. They also witnessed human beings who have long suffered the trauma and heartbreak of abandonment and who deserved to be remembered. Bringing solar lights was one thing Watts of Love could do to ease the daily burdens of being a person with leprosy. That day, they made a promise to come back and light the entire leprosy colony. It took a year and a half, but they kept their promise and returned this past September with 400 lights for the colony residents.
It’s difficult to cull expectations when approaching a leprosy colony and to not see the maimed limbs and stubs, blinded eyes and disfigured faces. Each person who entered the colony with the WOL team that day, wanted to help ease the physical and emotional pain of people with leprosy. But they were surprised and forever changed by what actually happened.
Because of the euphoria of the residents, the WOL team immediately stopped seeing people with leprosy and started seeing human beings. Andy King, a pilot for a major airline based in Chicago, was one of the volunteers present on that trip. “At first I felt apprehension. I was going to a leper colony and I was asking myself, ‘Does leprosy really exist in the world? Are we going to get leprosy when we go in there?’ I definitely had some fear and apprehension.”
Andy’s apprehension is understandable. So many educated people in the world believe this is an ancient disease long since eradicated and they have no idea that it wasn’t until 1873 when a Norwegian doctor, Armauer Hansen, first viewed the bacillus under a microscope. Incidentally, the formal name for leprosy is now Hansen’s Disease, and there are approximately 50,000 new cases each year. That’s one every two minutes.
“Initially, I saw the first person come to greet us and he had no hands. I couldn’t wrap my mind around that at first, but within 5 minutes his joy was so overwhelming that I literally forgot I was in a leper colony. These are real, real people. It became a true human experience that was about joy and love and giving — but I feel like we got more out of it than they did,” Andy remembered.
And he wasn’t alone in that. When Nancy was asked what she expected when she returned to the leprosy colony, she answered, “I don’t go [on light deliveries] with any expectations. We go in trying to imagine what it’s like for them. I knew this trip was going to be helpful, but we walked away learning so much more about ourselves and how to love people who are shunned and living in a caste system.”
There’s a very real human connection that is fostered when bringing lights everywhere, because it’s not just about a delivery. Watts of Love and their volunteer teams teach people how to use their lights. And, in this case, because it’s rare when anyone takes the time to be with them, the people with leprosy were inviting them into their individual apartments.
As Nancy put it, “The residents said that people come and leave. We were in their homes, sitting with them, talking to them, spending time with them. The light was a vehicle to get in and it stays there, but the time spent with them is our legacy.”
Kevin’s experience was not unlike Nancy and Andy’s but had a unique perspective. As a photographer, while helping with light distribution and teaching, he also documents their trips. “I wanted to capture the realities of [the residents’] difficult lives but couldn’t just capture that. These people weren’t somber like traditional photos of them show. They were joyful, happy to see WOL there, inviting us into their rooms, asking to be photographed.”
On his day off, Kevin returned to the colony. A man there wanted Kevin to see a framed photo of himself as a young man in his prime, with a full head of hair, in perfect health, decked out in a bell-bottomed suit as if he was on the set of Saturday Night Fever. Yet, there he was in this colony, ravaged by leprosy, shunned. It occurred to Kevin that the photographer who took this photo had no idea that he was documenting history for this man.
A boy translator asked Kevin to take his picture. Remembering the documented moment of the man, Kevin said, “Of course, but I’ll make it a portrait.” He realized that the value of a photo to any of the residents would have far greater potential than any of them would realize.
After taking the portrait, Kevin asked the boy if he thought anyone else would like to have a professional portrait taken. People lined up for this. Initially, they were all very serious. But Kevin wanted to photograph them like he would photograph his family and friends, laughing and having fun, joking around. Soon, a crowd gathered and the laughing became contagious and the people joyful. “I didn’t want to see them as people with leprosy, I wanted to see them as people with a full range of emotions,” he said.
Andy remembers observing Nancy connecting with the humanity in the colony. “Her unparalleled love for these people was far superior to anyone in the leper colony. She had both hands on this woman’s face and was looking at her. The woman had her nubs pressing Nancy’s hands into her face. These people aren’t used to being touched. To see Nancy’s compassion and passion for them when she walks into a place anywhere … She’s a rock star and people remember her and gravitate toward her. She’s not about crunching numbers in books she’s about getting out there.”
Kevin summed up what all of the Watts of Love representatives took away from their profound experience with these soulful humans, who are longing for connection in their unnecessary isolation from society. “We are way more alike than we are different. We want the same things — to be happy, to care for our children, to survive.”
Watts of Love would like to give special thanks to the following organizations and people for their deeply appreciated generosity:
St Raphael Church in Naperville, IL
Damien Leper Relief Society
All those who attended the Watts and Amps Music Festivals in Kansas City.
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