The June discussion will center on Alan Brennert’s historical fiction, Moloka’i. The book tells the story of Rachel Aouli Kalama Utagawa who, at the age of seven, contracts leprosy and is first placed at a center on Oahu (where her family lives) and then is moved to Kalaupapa on Moloka’i where Hansen’s Disease patients are isolated. The story is a personal one which also chronicles the treatment of leprosy. VisitMolokai.Com is a tourist website with facts about Kalaupapa and Fr. Damien’s (who is mentioned at the beginning of the book) mission, along with information about present-day Moloka’i and some beautiful photographs of the island.
For those interested in additional background information, HRSA has information about the National Hansen’s Disease (Leprosy) Program with links to the history of the program. The most recent CDC yearly Summary of Notifiable Diseases (published in May 13, 2011) notes that since 2006 the number of cases has fluctuated between 73 and 109 with 64.4% of those cases in California, Hawaii and Texas. The National Institute of Allergy and Infectious Diseases also offers some basic information about Hansen’s Disease/Leprosy, including treatment options, the history of the disease, and the current state of leprosy in global health.
In March 2003, CBS News aired a story, Last Days of a Leper Colony. The National Park Service oversees Kalaupapa National Historic Park and the Manzanar National Historic Site. The Manzanar site includes an Ansel Adams Gallery of photos and a virtual tour. PBS also aired a relevant documentary, Children of the Camps. One recurring theme in the book is the stigmatism of both the patient and the patient’s families. People tend to be afraid of those things they don’t know about, and it was not unique to the early 1900’s. A 2010 article, Understanding and responding to HIV/AIDS stigma and disclosure: an international challenge for mental health nurses, is a reminder of that fact.
Barbara Burr will be bringing photos of Penikese Island to the Friday meeting. Penikese was Massachusetts’ answer to Moloka’i and Ken Hartnett’s editorial, The Tragedy of Penikese Island, published on Nov. 26, 2005, details life on the island. There is additional information on the Mass Moments website.