Oral History Collections

As part of the Oral History Project, more than 125 interviews have been conducted with individuals, ranging in age from 13 to 83, who have personally faced the challenges of leprosy, from the following countries: Bolivia, Brazil, China, Ethiopia, Fiji, Ghana, India, Japan, Malaysia, Panama, Paraguay, Philippines, Samoa, Singapore, South Africa, Spain, the United Kingdom and the United States. More interviews are currently underway.

In addition, a number of conferences and workshops have been videotaped in order to record the voices and ongoing history of individuals who have had leprosy. These include the Robben Island Conference on Stigma, Identity and Human Rights, the First National Workshop for Women Affected by Leprosy in India, the First National Workshop for Women Affected by Leprosy in Nepal, and the First National Empowerment Workshop for Persons Affected by Leprosy in the Philippines.

Transcripts of most of these interviews and many of the original tapes are currently housed at the IDEA Center for the Voices of Humanity in Seneca Falls, New York.

Hansen’s Disease Museum, Japan
4-1-13 Aoba-cho, Higashimurayama-shi, Tokyo 189-0002, Japan;
Telephone: 81-42-396-2909; FAX: 81-42-396-2981
(Currently closed for renovation; enquiries should be addressed to Sasakawa Memorial Health Foundation smhf@tnfb.jp)

The Museum’s collection includes copies of many of the books written by people in Japan as well as the Journals of the different sanatoria, some dating back as far as 90 years, which include various writings, poems, and oral histories.

Oral History conducted in Japan includes the following:

Okinawa Prefecture Hansen’s Disease Testimonies/Documentation: Oral history and historical documentation being conducted by Jichikai (Residents’ Association) to preserve the history of two sanatoria in Okinawa prefecture: Airakuen (mainland Okinawa) and Nansei-en (Miyoko Island).

Compilations of oral history interviews (partial list):

Tokunaga Susumu, Kakuri (Isolation). In Japanese

Harukeku mo Tohku (So Far and Distant). In Japanese

Kalaupapa National Historical Park

This collection contains 67 tapes and transcripts of interviews conducted by
Anwei S. Law from 1984-1989 with the residents of Kalaupapa as well as family members, physicians, nurses, administrators, and politicians who have been a part of Kalaupapa’s history.

Copies of tapes and transcripts are also located at the IDEA Center for the Voices of Humanity in Seneca Falls, NY.

Guidelines for use of these materials can be obtained from Kalaupapa National Historical Park or the IDEA Center for the Voices of Humanity.

The National Library of Medicine, Washington, D.C., USA

The collection contains interviews with residents of the G.W. Long National Hansen’s Disease Center in Carville, Louisiana, c. 1990’s; 63 video interviews, administrative records, interviewee releases, interview transcripts. Some individual interviews are restricted.

Individual Collections:

Ayako Yaegashi has conducted extensive interviews with individuals who have had Hansen’s Disease in Japan, both those living in sanatoria and those living in the community, and written about these in articles and a book: Murakami, Ayako. Mou Utsumukanai (We Will No Longer Bow Our Heads). In Japanese.

Anwei Skinsnes Law has conducted extensive interviews with residents and other individuals, including family members, who have been involved with the Kalaupapa Settlement in Hawaii and also at the G.W. Long Hansen’s Disease Center in Carville, Louisiana. She has also conducted interviews with people who have personally faced the challenges of leprosy from different parts of the world. alaw@idealeprosydignity.org

Rosalijn Both conducted interviews with 35 women who have personally faced the challenges of leprosy in Ethiopia in 2005. R.E.C.Both@student.rug.nl

Loh Kah Seng conducted interviews with 21 individuals in Singapore and Malaysia in 2005. lkshis@gmail.com

Dr. Maria Leide Wand-del-Rey de Oliveira and her colleagues have conducted interviews with individuals affected by Hansen’s Disease in Brazil as well as individuals who have worked in the field of Hansen’s Disease. mleide@uol.com.br or mleide@hcff.ufrj.br

An article containing some of these interviews, Memories and History of Hansen’s Disease in Brazil Told by Witnesses (1960-2000), can be found at:

Dorothy McMenamin has conducted interviews with people who have had leprosy and others involved in the history of leprosy in Fiji and American Samoa. dorothym@inet.net.nz

Valerie Monson has conducted interviews with many of the residents of Kalaupapa, Hawaii, from 1989 until the present. valeriemonson@yahoo.com

Julie Tellei has conducted interviews with individuals who have had leprosy in Palau. j_tellei@palau-health.net