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‘L’ word in book The author of a new biography on a Hawaii historical hero will be signing copies of his book this week in Honolulu, but he will find some have shunned it because of objectionable language.
stirs controversy
Hansen's disease patients are
upset over an author using 'leper'
in writing about DamienBy Mary Adamski
Star-Bulletin"The Leper Priest of Moloka'i," published by the University of Hawaii Press, tells the story of Father Damien DeVeuster, who died in 1889 while serving island leprosy victims at Kalaupapa.
The book by Dr. Richard Stewart of Wisconsin went on sale in commercial bookstores last month, but it won't be found in the Kalaupapa bookshop or at the Damien Museum in Waikiki.
"It's startling how this man did not know how objectionable that word is," said Damien Museum Director Irene Letoto. "I counted 'leper' used 40 times in the first chapter. I couldn't finish the book," she said, and she decided not to stock it.
"For the lowest dregs of society, they used that term," said Makia Malo, 66, one of the Hansen's disease patients quarantined at Kalaupapa before drugs were developed to control the disease. Malo was 12 when he was sent to the remote Molokai peninsula. After forced isolation was lifted in 1969, Malo went to college and has developed a career as an oral storyteller in the schools.Malo said there is a special sensitivity in the islands because the disease is part of the history of thousands of families. More than 8,000 people died from leprosy, which reached epidemic proportions in the 19th century. There are more than 400 Hansen's disease patients here today, using modern medication to control the disease that disfigured and killed earlier victims.
"Just so that people understand I did not mean it in insulting fashion, I didn't mean it to demean," Stewart said in an telephone interview from Wisconsin. "If I had thought about it, I would have been more sensitive about it."
"Being a physician ... we automatically call it leprosy." Stewart said he wanted to "describe it so an average person can understand. The point was to get out information that was not well known." A retired professor who still lectures at the Medical College of Wisconsin, Stewart learned about Damien and became intrigued with the priest's practice of medicine when he visited Hawaii to lecture at the University of Hawaii School of Medicine in the 1980s.
The book is an edited version of the dissertation he wrote to earn a doctor of philosophy in English from the University of Wisconsin-Milwaukee. Compared to other Damien biographies, the book has a novel-like style. Island social and political currents and the tensions between the Catholic church and the dominant Protestant missionary religion are dramatized.
Stewart said the anecdotal flow reflects his lecture style. "I like to tell stories, little vignettes." Joseph Chang, a Hawaii-born member of his dissertation panel, advised him on Hawaiian history and language.
Stewart's research on the Belgian priest spanned 15 years. The book is replete with footnotes from letters between Damien and his family and religious superiors, from Vatican records and the archives of the religious order to which Damien belonged, and historical records in Hawaii. Collecting the scattered information into one volume "all of a sudden I had more information about Damien than the Vatican did," he said.
The author said he took pleasure in finding out that the Catholic priest gained much of his basic knowledge on ailments and treatment from a Protestant missionary doctor, Dr. Charles Wetmore of Hilo.
Critics don't object to using the word leprosy for the disease. "Leper," however, has historically had the connotation of outcast, carrying social and moral stigma. The state Department of Health and other medical authority also identify the disease as Hansen's disease, named for the scientist who identified the bacillus causing it.
Malo said he now confronts people who use the offensive word and finds "It's usually out of ignorance." But there are memories. "I used to hide my hands in my pocket like I was stealing something. Now I put my hands out there, they are the way they are. I feel comfortable, but not completely.
"I would hate to use a term to talk about somebody with cancer," said Malo. "You are reducing us to a mere word, like all other derogatory words." The negative connotation of that word was the topic of a panel discussion last weekend during the Maui showing of "A Quest for Dignity," a traveling exhibit of the International Association for Integration, Dignity and Economic Advancement.
"I can't believe a book published in Hawaii has this language, it is very offensive," said panelist Anwei Skinsnes Law, project coordinator of the international advocacy organization for people affected by Hansen's disease. Law was a founder of the show and the organization which focus on the accomplishments of people around the world who happen to have the disease.
"We took the show to Rome and, in an interview with Vatican radio, I said the same thing," said Law. "We talked about when 'leper' comes up in Scriptures, people should use it as an opportunity to discuss how things are now. Using labels, it's hard to see the distinction, to have the person and his individuality remain intact."
Law said "People write books about people they don't know, they don't know anyone with leprosy. This isn't an isolated incident ... but this guy is going to get the brunt of it."
Kalaupapa resident Henry Nalaielua, one of the Maui panelists, said he doesn't believe Stewart had the "experience of working with people like us.
"I'm not one of guys who is particularly offended by the word. It all depends on who uses it and how he uses it," Nalaielua said. "I've lived with this thing so long, it just passes through my ears."
Dr. Richard Stewart will sign copies of "Leper Priest of Moloka'i: The Father Damien Story" this weekend at the following locations. Author will sign
copies of book
Friday: 6:30-7:30 p.m., Waldenbooks, Pearlridge.