Book reviews
Breitha, Olivia Robello. Olivia; My Life of Exile in Kalaupapa. Honolulu, Hawaii: Arizona Memorial Museum Association, 1988, 104 pp., softbound, US$7.95.
This is an autobiography of a Hansen's disease patient from Hawaii. Diagnosed at 18 years of age in 1934, the author was contemplating marriage and describes the succession of emotions associated with learning of the diagnosis. She was hospitalized at Kalihi Hospital, and describes the indignities of institutionalization. In 1937, she was transferred to Kalaupapa on the basis that "treatment" was no longer of any benefit to her. Brief marriages to fellow patients ended in divorce and death. She then married another fellow patient at Kalaupapa. Sulfones became available for chemotherapy in 1945. Her healthy parents came to Kalaupapa that year to take over the bakery. Kind memories of an administrator, Mr. Lawrence Judd, and a priest, Father Peter d'Orgeval, are recounted. The author became bacteriologically negative on Promin and was able to leave Kalaupapa on "temporary release status." She remained primarily in Kalaupapa with her husband on their chicken farm until 1946. Both she and her husband developed "foot problems." In 1972 they were admitted to Carvillc for reconstructive surgery. The following year her husband died and she returned to Hawaii, remaining in Honolulu briefly and then returning to Kalaupapa. A chapter is devoted to the author's friendship with a volunteer who took her to a festival on the big island of Hawaii in 1982. The controversial closing of Hale Mohalu Hospital on Oahu is related. A chapter relates her trip to California. The book ends with chapters on the effects of the disease on the author, thoughts on AIDS, and the status of Kalaupapa. The book provides another view of the personal encounter of an individual with Hansen's disease and the imperfections of society's treatment of victims of the disease.-RCH
Gruner, Max. Leprosy and Human Dignity. Munich: Leprosy Relief Organization Munick c.V., 1988, 13 pp., softbound.
"The paper aims 1) to understand leprosy and the issues related to the disease in its historical perspective 2) to highlight the social and psychological barriers among people regarding the disease and 3) to describe the innovative approach followed by AHM in combating the disease worldwide through the alleviation of the suffering of those affected with leprosy by helping them lead a fuller life with human dignity and eventually achieving the goal of a leprosy-free world.
"Through experience in the field and lessons learned from history, AHM's main emphasis is to attack the problem of leprosy at its social roots. Mother Teresa has said 'Any disease can be cured, but the disease of not being accepted and loved is one that is very hard to cure.' This is the challenge to social scientists, experts of communication, and all those who are connected with leprosy work.
"Over the years AHM through its continued interest and commitment toward leprosy work has demonstrated that nations can change from denial stage to not only accepting leprosy as a problem, but also to the stage of starting honest actions to bring change in the situation of leprosy in the countries. Thus, AHM appeals and expects from the community of social scientists to study the problems of leprosy in depth and to launch a movement based on their scientific research to eliminate this disease from society.
"There is no short cut. This has to be done by the people, for the people and with the people. We have still a long way to go but, hopefully, this way can be shortened by the creative interest and commitment of the social science community." - (Front the paper given at the XIII International Leprosy Congress, The Hague, The Netherlands, 1988)
Law, Anwei V. Skinses and Wisniewski, Richard A. Kalaupapa National Historical Park and the Legacy of Father Damien (a Pictorial History). Honolulu: Pacific Basin Enterprises, 1989. ISBN 0-938144-08-1. Softbound, 72 pp., many photographs including color, $6.50 (includes first class postage); quantity discounts can be obtained by writing: Pacific Basin Enterprises, P. O. Box 8924, Honolulu, Hawaii 96830, U.S.A.
"Recognizing the need for a factual, non-sensational yet concise and affordable book on the history of leprosy in Hawaii, these two authors have combined their different backgrounds and expertise to produce ., . a condensed, pictorial history of leprosy in Hawaii...."
This small book is packed with information on the early history of Molokai (site of Kalaupapa) and the introduction of leprosy into Hawaii, the arrival of Father Damien and his labor of love for those afflicted with the disease. Mother Marianne and the Sisters of St. Francis, Brother Dutton, the "politics" of leprosy in Hawaii, the progress made at Kalaupapa, and the establishment of the Kalaupapa National Historical Park.
The authors have indeed accomplished what they set out to do. The booklet should be of interest to all of those interested in the history of leprosy and in the lives of those compassionate few who early on knew as we know now that "leprosy is a disease not a crime."- DDG
Proceedings of the International Congress on Medical and Social Rehabilitation of the Disabled in the Third World Countries with Emphasis on the Rehabilitation of the Leprosy Patient. Bologna: Associazione Italiana "Amici di Raoul Follereau," 1988. Softbound, 290 pp., black-and white and color illustrations.
Rehabilitation of disabled people in general and of those disabled by leprosy in particular is not conceived by everyone in the same way.
Different interpretations of the word "rehabilitation" may be discussed in terms of the practical or theoretical aspects of various therapeutic approaches, but they may also reflect very basic differences in the way man himself is conceptualized.
There are those who consider rehabilitation to be a purely mechanical intervention, to reduce or eliminate a motor deficit, for example, without giving any serious consideration to other fundamental aspects of the person which may also be contributing to the disease or disability. This is the risk run by those who are still too tied to a purely organic and materialistic concept of man and medicine, which can result in a rather arid therapeutic approach.
On the other hand, in some leprosy centers there are those who think that rehabilitation regards merely moral or spiritual problems, thus reducing it to forms of consolation. Neither is this kind of pseudomysticism rooted in genuine humanity.
Both of these extremes violate the inseparability of the psycho-spiritual from the physical in man, and they are particularly dangerous when they operate in self-imposed isolation with the presumption that only their particular approach is valid.
In December 1984 the Italian Association "Amici di Raoul Follereau" held an International Congress in Rome on the rehabilitation of the disabled, with a particular focus on those disabled by leprosy. Its uniqueness and significance were to be found in the participants' conscious attempt to overcome this dualism between the physical and the psycho-spiritual, in order to construct a more holistic view of the disabled and, consequently, to develop a more unitary and dynamic approach to treatment.
The Proceedings of the Congress are a clear evidence of this approach.
For didactic reasons the different aspects of rehabilitation (medical, surgical, technical-orthopedic, anthropological, social, psychological and pedagogic) were presented and discussed in separate sessions and reports.
A complete reading of the Proceedings offers a comprehensive outline of the problems facing the disabled, and suggestions are made for more efficient planning of rehabilitation services. Talks include: definitions of rehabilitation, disability and handicap, reports of various experiences in the field in different parts of the world, etc.
Particular attention should be given to two other very important aspects of the problems presented: one is the prevention of disability and handicap, and the other is the adoption of a psychosomatic approach to treatment, which undoubtedly represents a significant advancement in the field of leprology, opening up new possibilities for both research and treatment.- (From the Introduction by C. Travaglino)