Memoirs & Other Books & Poetry Written by Individuals Who Have Personally Faced the Challenges of Leprosy/Hansen’s Disease
The largest collection of writings by people who have had leprosy is in Japan, where there are a few thousand publications by the people themselves. In 2002, Koseisha Publishing House in Japan started a project to publish the Collected Works of Hansen’s Disease Literature.
More than 1000 books have been written; 1,700 poets have written more than 20,000 tankas and haikus. In addition, the residents published journals in each sanatorium, some going back as far as 90 years, which were filled with poetry, artwork, and oral histories.
Some of the authors and poets are (surnames listed last): Tamio Hojo, Minoru Yoshinari, Kazuo Toyoda, Toshio Miyajima, Takayuki Koizumi, Goro Sawada, Ryosaku Nagusa, Haruki Mori, Keisuke Hyougami, Hachiro Kai, Osamu Kazami, Tetsuo Sakurai, Toshiyuki Fuyu, Hiroshi Shima, Kaseki Murakoshi and Kazuko Toh.
Note: An author’s works are all listed together, under the first decade in which their work was published. This is only a partial list and will be added to as more information becomes available.
Kaluaikoolau, Mrs. Piilani (Hawaii):
Ka Moolelo Oiaio o Kaluaikoolau. (In Hawaiian) This Memoir originally told to Kahikina Kelekona and published in 1906, was translated into English by Frances N. Frazier and published in 2001 by the University of Hawaii Press under the title The True Story of Kaluaikoolau as Told by His Wife Piilani. “Obras Completas” (Complete Works), which included poetry and theater in verse, was edited in 1952 and 1959, after his death. “Arenillas de mi Tierra” (“Sand from My Country”) was printed in 1969.
Nagata, Honami (Japan):
Mi Sora no Hana (Flowers of Heaven). Japan: Koyusha, 1928. (In Japanese)
Guerrero, Manuel Ortiz (Paraguay):
Work published in the 1920’s and 1930’s includes: “Eirete”, “Surgente”, “La Conquista”, “Nubes del Este, “Pepitas”, “Paraguaýpe”, “Panambi vera”, “Nde rendape ayu” and “India”. (In Spanish and Guarani)
“El Crimen da Tintalila” (Crime of Tintalila), a tragedy in three acts, was written in Asuncion in 1922, and “Eireté”, in Villarrica in 1920.
“Obras Completas” (Complete Works), which included poetry and theater in verse, was edited in 1952 and 1959, after his death. “Arenillas de mi Tierra” (“Sand from My Country”) was printed in 1969.
Hojo, Tamio (Japan):
Inochi No Shoya (The First Night of Life). This was his most famous book, which was translated into English and German. He wrote six novels and was guided in his writing by Yasunari Kawabata, a Nobel Prize Laureate.
He also published a series of short stories about life with Hansen’s Disease in a number of journals, including the prestigious journal Bungaku Kai.
Early, John (USA):
John Early. Twenty –Eight Years at the Quarantine “Bat”. Self-published, c. 1935.
Residents of Carville (USA):
The STAR, started by Stanley Stein, David Palmer and others in 1931, was published by the residents of the U.S. National Public Health Service Hospital in Carville, Louisiana. Its publication continues today. At one time its circulation was 90,000.
Akashi, Kaijin (Japan):
Hakubyo (tanka) (In Japanese), 1939.
Kaijin Ikoh, (In Japanese) 1939.
Kaijin Zenshu 1 and Kaijin Zenshu 2, (In Japanese) 1941.
Martin, Betty (USA):
Miracle at Carville. (Translated into several languages, including Japanese and Dutch) New York: Doubleday & Company, Inc., 1950.
No One Must Ever Know. New York: Doubleday & Company, Inc., 1959.
Greave, Peter (England):
The Second Miracle. New York: Henry Holt and Company, 1955.
Young Man in the Sun. London: Eyre & Spottiswoode, Ltd., 1958.
The Painted Leopard. London: Eyre & Spottiswoode, Ltd., 1960
The Seventh Gate. London: Temple Smith, 1976.
Tsuda, Haruko (Japan):
Tsuda Haruko Kashu (The Collection of Poems of Haruko Tsuda). (In Japanese), 1955.
Yuki Furu Oto (The Sound of Snow Falling). (In Japanese)
Stein, Stanley (USA):
Alone No Longer. New York: Funk & Wagnalls Co., 1963.
Zen Ryo Kyo (Known as Zen Kan Kyo until 1996) (Japan):
Zen Kan Kyo Undou Shi. (History of the Zen Kan Kyo Movement). (In Japanese) 1977.
Hansen’s Disease Sanatoria: Ninety Years of Isolation. (In Japanese) 1999.
Fukken Heno Jitsugetsu (Days and Years Towards the Recovery of Rights). (In Japanese)
Nunes, Francisco A.V., “Bacurau” (Brazil):
Margens da vida (Edges of Life). (In Portuguese)
Chico-Boi (Chico, The Ox). (In Portuguese)
Han, Ha Woo (South Korea):
Endless Yellow Soil Road. (In Korean) South Korea: Ji Moon Publishing, 1982.
I . . . I Will Be a Blue Bird If I Die. (In Korean) South Korea: Byum Jo Publishing, 1987.
Alone, Missed, but Burned Black Like Sunflower Seeds. (In Korean) South Korea: Iga Publishing Co., 1990.
Barley Flute. (In Korean) South Korea: Future Publishing, 1991.
Heaven’s Punishment. (In Korean) South Korea: Chung Am Literature Publishing, 1992.
My Saddest Life, in the First Half. (In Korean) South Korea: Literature and Culture, 1993.
A Blue Bird. (In Korean) South Korea: Literature & Reality Publishing, 1995.
Le Beaux, D.J. (USA):
Love Me Somebody. New York: Vantage Press, 1985.
Breitha, Olivia (Hawaii/USA):
Olivia, My Life of Exile at Kalaupapa. Honolulu: Arizona Memorial Museum Association, 1988.
Hércules, Amazonas (Brazil):
Canção da Esperança (Poesias e poemas em prosa e verso) (Song of Hope: Poetry and Poems). (In Portuguese) Self-published in 1990 and again in 1991.
Malo, Makia (Hawaii/USA):
Makia: Tales of a Hawaiian Boyhood. The Kalaupapa Years. Audio tape. Honolulu, 1993.
Makia: Tales of a Hawaiian Boyhood. The Honolulu Years. Audio tape. Honolulu, 1994.
Harmon, Johnny (USA):
King of the Microbes. The Autobiography of Johnny P. Harmon. Self-published, 1995.
Berthelsen, June (Australia):
The Lost Years. A Story of Leprosy. Australia: Surrey Beatty & Sons, 1996.
Borges, Antonio, Jr. (Brazil):
Fragmentos da vida (Fragments of Life). (In Portuguese)
Matsumoto, Kaoru (Japan):
Umareta no wa Nan no Tameni (Why Was I Born?). (In Japanese) Tokyo: Kyobunkan, 1993.
Sheem, Jeon Hwang (South Korea):
Ah! 70 Years of Sorok Hospital. (In Korean) South Korea: Dong Bang Publishing, 1993.
Lee, Jae Sung (South Korea):
Winning Over My Times of Despair. (In Korean) South Korea: Sung Moon, 1996.
Morimoto, Miyoji and Mieko (Japan):
The Mistake of the Japanese. (In Japanese), 1996.
Hirasawa, Yasuji (Japan):
No Despair in Life. (In Japanese) 1997. English version published by the IDEA Center for the Voices of Humanity, 2006
My Uncle Had Hansen’s Disease. (In Japanese) 1999.
Lin, Zhi Ming (P.R. China):
No Misery in the World. (In Chinese) Guangzhou: Flower City Publishers, 1999.
Kim, Shin Ah (South Korea):
Don’t Hurt Even a Lump of Clay. (In Korean) South Korea: Nashilline Publishing, 1999.
God, My God. (In Korean) South Korea: Break Media, 2005.
Won, Yoo Soon (South Korea):
What a Beautiful Friend. (In Korean) South Korea: Blue Books, 2001.
Sheem, Jeon Hwang et al. (South Korea):
Hope Rather Than Land is Taken by Force. South Korea: Hansung Cooperative Association, 2002.
Garrety, Patrick (England):
Life Went On: The Autobiography of Patrick Garrity. New York: IDEA, 2005.
Books Incorporating Quotations or Oral History Interviews:
Law, Anwei Skinsnes and Levin, Wayne. Kalaupapa: A Portrait. Honolulu: Arizona Memorial Museum Association and Bishop Museum Press, 1989.
Gugelyk, Ted and Bloombaum, Milton. The Separating Sickness - Mai Ho Oka Awale. Honolulu: Booklines Hawaii Ltd., Third edition, 1996.
IDEA, Quest for Dignity. Personal Victories Over Leprosy/Hansen’s Disease, 1997.
IDEA, Freeing Ourselves of Prejudice, 2000, 2002.
IDEA, The Texture of Our Souls, 2000.
IDEA Center for the Voices of Humanity, Peace: The Fruit of Justice, 2004. On-line exhibit of this book can be found at: http://www.aifo.it/english/resources/online/exhibitions/ideabook/idea12.htm
Tokunaga, Susumu, Kakuri (Isolation). In Japanese
Harukeku mo Tohku (So Far and Distant). In Japanese
Murakami, Ayako. Mou Utsumukanai (We Will No Longer Bow Our Heads). In Japanese
Rupak Ghosh and Prof. Ujjwal K. Chowdhury (Editors). Dignity Regained. An Icons Media Publication, 2005.
IDEA Center for the Voices of Humanity, Illuminating Ourselves. Scheduled to be published in 2006.
-- Zen Kan Kyo (Association of persons affected by Hansen’s Disease, now known as Zen Ryo Kyo), Japan, 1952
“I wrote a book because I wanted people to know what I feel, what I felt . . . . how much I struggled, fighting the disease, fighting bureaucrats, trying not to be a statistic, trying to be a person.”
-- Olivia Breitha, Author, Kalaupapa, Hawaii