Leprosy

I now know many people with leprosy. It was not a disease that I expected to come across ever in my life, but I am definitely familiar with it now. A woman without hands or feet is always in front of the mess hall, just sitting or occasionally begging. During my village visits I have met several older people who had advanced stages of leprosy before they could access treatment. They lost most of their feet and hands as the nerves in these extremities died and they walked on thorns, burned their hands, or did something else that we would all notice but then, importantly, failed to care for the painless, tissue-killing cuts and infections until slowly they lost parts of their body. Nowadays there is treatment to stop the progression of the illness and so the younger people with the infection only develop other signs (white patches on the skin) before they access medication.

Seeing people with leprosy has helped me to understand more about stigmatized illnesses and what science has done by giving us biological explanations for disease transmission. In my sociology class I had studied stigmatization as a negative process of cruelty born out of terror and a fear that something similar may happen to you. This is true of leprosy, AIDS, and homelessness, amongst other conditions. Yet seeing it in action with leprosy, and experiencing how much science, knowledge, and understanding can shift the equation has made me wish we could understand social and economic issues like homelessness much better.

Understandings of leprosy besides science tend to revolve around sin, curses, or some other divine action that works against the person with leprosy. Their solution is then to access a spiritual healer but really the person with the illness is ostracized and turned away because they are dangerous to the community. No one else wants to be contaminated by their presence. It is unfortunately and sadly an understandable reaction. I don’t want to set myself above these people: I feel that I too would have had a hard time being near someone with such a terrifying condition without knowing that I am not at risk of infection and there is a treatment. I can see how people felt they had done something wrong so that they could feel safe in knowing that as long as they do “things right” they won’t fall under such sad circumstances. In accessing such a perspective I have come to regard as saints those who have dedicated their lives in the past centuries to caring for and tending to people with leprosy. They gave of themselves so deeply and profoundly for others.

We still don’t understand exactly how leprosy is transmitted (we know it’s barely infectious, we have the bacteria, but we don’t have the mode of transmission well understood), but we do have a treatment. With this knowledge the world is changing. This famous, historical illness (Jesus cured people with leprosy) is now on it’s way out. There are only 200,000 cases left and it soon will be eradicated. Faith in one’s safety and in a treatment has lowered the stigma so profoundly that an illness that once sent people to “leper colonies” now gives far less terror and fear and through tough social work can be accepted. There is a village health worker here with leprosy, and despite her illness and its prior stigma she can enter into intimate moments of people’s lives and bring babies into this world, handling the vulnerable infant without anyone being uncomfortable. The world has come far with leprosy. Can we do this again with another stigmatized condition? Greater morality (don’t judge and be tolerant) is certainly important, but how else can we create a better society or physical world to reduce other stigmas? It’s an interesting question, that’s for sure.