By Nikhil Nadkarni
It all starts one morning while you are bathing in a nearby lake. You notice a small skin lesion on your forearm and think nothing of it. You continue with your daily routine by tending to your rice paddies with your family. A few mornings later, you notice more lesions all over your body and you begin to get worried. Fearing the worst, you make your best efforts to hide the lesions from your family and neighbors, but after a few weeks they become so numerous that they cannot be hidden from view. As soon as someone notices your condition, word spreads around the village and soon everyone is fearful of you, avoiding you at all costs. You are considered cursed and are no longer fit to live in the same hut as your family. Even worse, your neighbors force you to leave the village as well. You are left at the side of the road with no family, no friends and no place to call home. You belong to the lowest rung of society. You are a leper.
In the summers of 2009 and 2010, I spent a total of ten weeks volunteering at a 3500-person leprosy colony called Anandwan (which means forest of joy) in the Indian state of Maharashtra. During my trips, I heard several versions of the aforementioned scenario from leprosy patients who had come to Anandwan from all over India. They told me their tragic stories about being ostracized from society, begging in the gutters and eventually finding hope and a second chance when they arrived in Anandwan.
When a patient is admitted to Anandwan, he is rehabilitated in every aspect of his life. The rehabilitation begins with a multi-drug treatment that targets the m. leprae bacteria that cause leprosy. Within a few days, the patient is no longer contagious, and within four to six months, he is cured of the disease. However, medical rehabilitation is only half the battle. The disease is considered to be a curse or punishment and the stigma against leprosy is one of the most tragic aspects of the disease. Social and psychological issues plague leprosy patients because many of them have been removed from civil society for years. They are depressed, lack self-esteem and are burnt out from their hardships. At Anandwan, once a leprosy patient is cured of the disease, he is taught a trade, which can include woodworking, gardening, cooking, designing crafts, creating tapestries, welding and many more. These trades have a purpose that is two-fold. First, they allow Anandwan to be sustainable and free for inhabitants by creating products that can be sold to outsiders. Second, they give the leprosy patients a sense of dignity and community; Anandwan transforms them into contributing members of society, which dramatically changes their perception of self-worth.
Baba Amte, one of India’s greatest philanthropists, founded Anandwan in 1949. He had an encounter with a leper that he nursed back to health as a young man and that experience moved him to devote his life to the care of the downtrodden and disadvantaged members of society. Since then, Anandwan has grown and flourished into a community that is almost entirely self-sustained. All of the food, clothing, and other daily necessities are all produced within Anandwan. The only things that they get from the outside world are petroleum and salt. The inhabitants of Anandwan are no longer just limited to leprosy patients; people with a wide range of disabilities and hereditary disorders are welcomed to Anandwan with open arms. Moreover, the inhabitants of Anandwan get married and live fairly normal lives, so the colony is home to many families whose ancestors were some of Anandwan’s first patients.
Baba Amte’s approach to philanthropy is unique in that it rejects the common model of charity. His motto was “Give them a chance, not charity.” Baba believed that giving charity creates welfare addicts and people who cannot carry their own weight in society. This is ultimately harmful for the recipients of charity because they are constantly in a subordinate position and lack the dignity that comes from supporting themselves. Furthermore, Baba believed that the best way to rehabilitate people with diseases like leprosy was to give them a sense of community and dignity. He achieved this by teaching patients a craft that they could use to become productive members of society. Even after Baba Amte passed away, his model for improving the lives of leprosy patients is still being practiced in full force at Anandwan today.
In my first summer as a volunteer at Anandwan, I spent most of my day working with leprosy patients and the doctors that care for them. Each morning, I would wake up at the break of dawn and walk over to the leprosy hospital, a small clinic that could house only four patients at a time. One by one, patients would come into the clinic, climb up onto one of the tables so that they could have their wounds cleaned and re-bandaged. I have no shame admitting that wrapping wounds for leprosy patients was an extremely emotionally difficult endeavor for me.
My first wound wrapping was the hardest thing I have ever been asked to do. Even in violent movies, I had never seen anything like it, which is why I struggled to suppress my urge to vomit. As I slowly unraveled his blood stained bandages, the golf ball sized gash in the heel of his toe-less foot was revealed. I sat there panicking internally, while trying to maintain my outward composure. The nurses standing around me in this dimly lit village hospital expected me to clean the wound and apply a new bandage. I had seen them do it several times before on other patients, but this wound was much bigger than the ones I had seen. It was my job to fix it and that thought chilled me.
As I became increasingly aware of the patient’s eager gaze upon me, a simple thought occurred to me. This experience was a test, not unlike a physics problem or a reading response essay. I already had all the information I needed to pass; I just needed to find the courage to apply it. Thinking of it like that gave me the clarity that I needed. I used the bandages and anti-septic solution, mimicking the cleaning and wrapping steps that I had been taught. When I finished, he tugged at his bandages to ensure they were tight, and nodded at me as he left, a sign of his approval. I had only a moment to celebrate my first wound wrapping, because the next patient immediately climbed on the table.
By the end of my summer 2009 stay in Anandwan, l had wrapped wounds for hundreds of leprosy patients, and it became second nature. When I came back to UCSD in the fall, I was strongly motivated by the impressive work being done at Anandwan. I wanted to do my part to contribute further to improving conditions at Anandwan, and I wanted to let my classmates have the same experiences that I had. As a result of these drives, I founded a chapter of an organization called Project RISHI (Rural India Social & Health Improvement). The goal of the organization is to raise funds during the school year and in the following summer send 100 percent of those funds, along with student volunteers, to support Anandwan.
One year after my first visit, I returned to Anandwan to lead a group of ten peer volunteers from Project RISHI chapters at UCSD and UC Davis. I taught them how to wrap wounds for leprosy patients just as I had been taught a year before. We surveyed the site, conducted interviews and are currently in the process of using that information to design sustainable support projects and initiatives to improve the quality of life for people at Anandwan.
In Project RISHI, one of our primary goals is to educate the general public about leprosy, because common knowledge about the disease is dominated by myths and misconceptions. Leprosy is widely feared around the world, but 95 percent of the human population is naturally immune to the m. leprae bacteria that cause leprosy, which makes the risk of contracting it fairly low. M. leprae causes lesions on the skin and damages peripheral sensory nerves in the body. Once the bacteria damage these nerves, the subject loses the ability to feel sensations in the afflicted part of the body. A person with leprosy could be holding a scalding hot cup of coffee, which is burning their hand, and not be aware that they are being injured. The accumulation of such injuries is what causes the deterioration of limbs and extremities and is the reason that even cured leprosy patients require regular wound cleaning and wrapping. Once a patient undergoes the multi-drug treatment, they are no longer able to pass the disease on and their condition will not worsen. However, their nerves will not regenerate, so even cured leprosy patients are forced to live with their loss of sensory perception for the rest of their lives.
It’s an unfortunate fact that a completely curable disease, such as leprosy, is still common in India. However, with increased awareness and efforts to support places like Anandwan, we can make significant progress towards eradicating the disease and the social stigma that accompanies it.
Image Courtesy of Nikhil Nadkarni