The scourge of leprosy
“You are a leper!”, he screamed at me, “Don’t even touch my child! We will not eat anything prepared with your hands”. I looked up, first startled and then stunned, not knowing how to react (It sounded worse when said in Hindi). This was a graduate, net-savvy professional’s idea of a joke. I didn’t find it funny then. I still don’t find anything funny. What struck me was the viciousness and the vileness with which these words were flung at me.
No, I do not suffer from leprosy. I am afflicted with a skin ailment which causes the skin on my palms to thicken abnormally and then break up into painful deep fissures. But that is not the point. What if the ailment I have was actually leprosy? Wouldn’t that person’s reaction have been the same?
The whole issue is the insensitivity with which patients of leprosy are treated by society. The word ‘leper’ has become synonymous with being unclean. It is ridiculous in these times given that leprosy now has a cure and is just other infectious disease which can be treated. The disfigured hands and feet can be a thing of the past if the disease is diagnosed and treated early. But what cannot be cured so easily is the disease in our own minds.
The stigma of leprosy is hard to erase. Patients are ostracized and shunned by society and their own families. One patient summed it up like this, ‘We can endure losing fingers and toes, eyes and nose, but what we cannot endure is to be rejected by those nearest and dearest’.
I have seen an excellent effort at rehabilitation of patients of leprosy, at Anandwan in Warora in Chandrapur district. The dream village set up by Baba Amte continues to function even after his death. As a child I met him a couple of times. I always remember him saying “Work builds, charity destroys”. He used to shun charity and has taught thousands of patients to live independent lives with dignity. Each time I visit Anandwan, the cleanliness of the place never fails to catch my attention. And the beauty of their self sufficient enterprise is amazing- the grow their own crops, make their own furniture, weave their own cloth, print handicraft paper, create beautiful footwear, and grow lovely flowers. And you always come back ashamed of humanity when you hear how each person there was thrown out of their own houses and earned a life of respect at Anandwan.
As a pathologist, in a leprosy endemic area, I come across these cases regularly, and I can never forget my teachers telling me to label them ‘Hansen’s disease’ instead of leprosy. I don’t know how much of a difference the altered nomenclature made, but it is an indicator of how deep the stigmatization of leprosy has percolated. The way you teach medical students about leprosy also affects our mindset. My favorite teacher in dermatology used to take his patients into an area with bright sunlight and examine his patients carefully. And he did it with so much sensitivity. I remember overhearing a comment from one of my fellow students- “Look! He isn’t scared of touching his patients when he can avoid doing so.” There are these unsaid things– and my teacher was a perfect role model— teaching by example to empathize with your patients. Sadly, the same cannot be said of all medical teachers and doctors.
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