Blog: Leprosy in literature

Novels often address contemporary social issues. Looking for novels in which leprosy disease is a main theme can give us interesting insights into both how leprosy is understood as a disease and how fiction authors without leprosy envision leprosy as an everyday part of life. In this article I explore two books which have leprosy as a main theme, and also why it matters.

The Island

Reading The Island (2005) by Victoria Hislop was the first time I learned about leprosy. The book has been translated into over 20 different languages and has been a bestseller in many countries around the world. The book centers around the former Greek leprosy colony of Spinalonga. Throughout the book, the author shifts who the main character is to describe the experience of leprosy from different perspectives. Readers follow Alexis, the contemporary character, who first finds the history of leprosy off-putting or even disgusting, but when she learns more about it, she lets go of her former beliefs and prejudice around the disease. Alexis finds that leprosy is more intricate and multifaceted than she first thought. She learns about the story of her great-grandmother Eleni who was a person affected by leprosy. The novel explores how the people in the leprosy colony learned how to build a community and to thrive on the island despite their isolation and their state of health. Then we see the effects of losing someone to leprosy—how Eleni’s family has to keep moving on with life.

The Samurai’s Garden

The Samurai’s Garden (1994), written by Gail Tsukiyama, is set in Japan from 1937-1938. The story centers around a young man, Stephen, who is sent to Tarumi to recover from his tuberculosis. There he meets Matsu, the family servant. We learn about Matsu’s past: he has had contact with people in the nearby leprosy colony because his longtime friend Sachi lives there. The book describes how the Japanese cultural expectation at the time was that people who were diagnosed with leprosy would conduct honor suicide as to not bring shame to the family. Throughout the book we can see how Sachi has been isolated by society—how she is called a monster for her deformities. But we also see how Matsu and Stephen find her beautiful and don’t define her by her disease. This book, much like The Island, also shows the role of community support for leprosy-affected individuals and how they live on despite the way they are treated by society.

Life goes on

Both of these books narrate how persons affected by leprosy live on with the consequences of their disease. They build a community and create a life together.

These two works are not alone. Leprosy makes an appearance in many novels. Some books, like Sweet Bean Paste (2017) by Durian Sukegawa, have key characters with leprosy who make a positive difference in people’s lives. Other books casually mention leprosy as nearly unremarkable. In The Stranger (1942) by Albert Camus, the main character, Meursault, meets a nurse with a deformed face due to leprosy, a detail demonstrating the presence of leprosy in daily life.

Literature is one of the strongest forms of communication in our society. It can convey a story in time, and place. The books I have mentioned in this article come from different places in the world and show the overlapping experiences of persons affected by leprosy. Fictional books can show how leprosy exists in different cultures, and in different times. Therefore, it is important for leprosy to take its place in literature. For many people, literature is their first interaction and learning about leprosy. This can lead them to reflect more upon leprosy-affected people’s treatment in the past and in the future.