Separating Sickness - Ma'i Ho'oka'awale (eBook)

Interviews with Exiled Leprosy Patients at Kalaupapa, Hawaii.

Milton Bloombaum, Ted Gugelyk (Autoren)

eBook Download: EPUB

2013 | 1. Auflage
109 Seiten
First Edition Design Publishing (Verlag)
978-1-62287-263-3 (ISBN)

Infos

This book is about the stigma of leprosy in Hawaii and how sick Hawaiian people were arrested and imprisoned for life because of their disease. It is a book about the fear of the unknown, pandemic, fear of sick people who cannot be cured quickly, or at all. It could happen again, mandatory isolation imposed as a Public Health policy for diseases not readily cured.

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PREFACE

This is a people's narrative~a biographical recollection, retrospective and contemplative, personal, painful, and at times angry—about what it means to be a leprosy patient in Hawaii in the early 1900s and today. But a people's history depends on the personal oral recollection of an experience. Accuracy is the extent of the genuineness of an experience. Here, documentation is individual perception, footnoted and punctuated by the accuracy of one fact—the experience of having been diagnosed and confined as one with the Ma'i Hookaawale—The Separating Sickness (Leprosy).

Perception of one's past influences perception of one's present and future. Since Kalaupapa people have not had an easy life ("we came up the hard way"), remembrances of difficulties endured makes them careful. Shy and weary of strangers, skeptical of administrative intents, policies and politicians, they wish one thing above all—a secure home at Kalaupapa. They also wish to be left alone—by photographers, tourists, and the other curious, including writers such as myself. "It's hell answering your questions. We try to duck people like you!"

Yet social scientists and journalists are a curious and perseverant breed. They always investigate the lives of minority groups, be they minorities like Blacks or Chicanos, or leprosy patients. I am interested in the latter. Leprosy patients voluntarily confined, and for the most part isolated, on a little peninsula on the island of Molokai, in Hawaii. The peninsula is called Kalawao, and their "hometown" is Kalaupapa. Leprosy patients have been sent to Kalaupapa for 103 years, from 1866 to 1969. They were sent there involuntarily—against their will—as a public health measure to combat the spread of the leprosy bacillus, and that is where Father Damien served the patients from 1873 to 1889 and brought worldwide attention to the little community. Involuntary confinement lasted in Hawaii until almost 1970, but similar confinement of leprosy patients occurred throughout the world. Before the innovation of sulfone drug therapy in the 1940s, millions of persons were confined or imprisoned. In

Hawaii, many thousands were affected. Kalaupapa is filled with the graves of those confined there in the past, and this book contains some of the stories of the 128 patients still remaining at Kalaupapa. Now they remain there by choice. They talk about their feelings and what it was like to be imprisoned at Kalaupapa. Why do they elect to remain in the community since they are now free to leave and reside elsewhere? Are they bitter about their lives, angry at society or the government about the treatment they have received historically and in the present? These are personal narratives, maybe oral histories, individual reflections on lives lived in confinement.

 

The Method of Research

Perhaps social scientists are reformers at heart. My reformist tendencies were established long before 1 developed an interest in sociology. Thus, I take comfort in Mark Twain's words, "always do good. It will surprise some and please others." I have tried to do good in these interviews. That is, present as accurately as possible the social effects of leprosy affliction—from the patient's point of view. The intent of this partial transcription of field notes, then, is to present subjectively, from the point of the patient, the internal personal meaning of having been involuntarily isolated at Kalaupapa, although legally they are now free to live elsewhere should they wish to. Thus, it is the patient's definition of the situation that is presented, but this definition is reformist-oriented, because the patients suggest improvements for the leprosy control program in Hawaii, and appear skeptical about the administration of their future. This study is not, then, an objective and empirically sophisticated policy analysis. It emphasizes the subjective. Although other methods of social science research stressing the more "scientific" approach will be used in later publications concerned with this study, including policy analysis, this portion of the work attempts to define reality by asking the person afflicted with leprosy, "What is it like, being a leprosy person?" I think that question is important, because perhaps, there is no final certainty in social science, no criteria for what is real, other than an individual actor's subjective meaning attributed to an experience. So, some human experiences with leprosy are documented here in the patients' own words and hopefully an interpretive understanding of the social aspects of leprosy affliction will be reached. In this work, I claim no interest in prediction, final truths, or experimental techniques. I do hope, however, that this accounting will be useful.

 

Background of the Study

My interest in Kalaupapa goes back to 1967. Part of my Master's work in Sociology at the University of Hawaii concerned itself with preliminary demographic research at the Kalaupapa leprosarium. Results of that research were published with Milton Bloombaum in the Journal of Health and Social Behavior in 1970. My current interest in Kalaupapa is part of the Social Aspects of Leprosy Research Project, also with Dr. Bloombaum (Principal Investigator). The project is a cross-cultural investigation of the phenomena of leprosy stigma in the State of Hawaii. Thus, early 1967 investigations were concerned with the transition of the Kalaupapa leprosarium from a community of patients involuntarily confined and isolated to a group voluntarily confined as "cured" patients. Conclusions were that reverse isolation was due to prolonged tenure in the institution, disfigurement, and stigma imputed by the patients to the general community.

Current research, the accounting of which is partially and briefly presented in this work, is more concerned with self-esteem and degree of depressive affect among the Kalaupapa patients. Thus, standardized social-psychological instruments have been administered to almost all of the patients in residence at Kalaupapa. In addition, in-depth interviews of patients have been conducted eliciting information about stigma perceived by patients, the understandings and attitudes towards their disease, and summarizing patient biographies and their lives in general. A small portion of those interviews (the subjective perception section) are presented in this volume. The Kalaupapa questionnaire contains over 110 separate items, and has taken over two years to administer to the residents of the community. Individual interviews have lasted as long as six hours. Most of the findings from Part I of our research are still in the process of being analyzed. In addition, Part II of our project is concerned with a cross-cultural State of Hawaii survey of attitudes towards leprosy and selected other diseases. This survey will provide us a basis for ascertaining the relationship between general community attitudes towards leprosy and those of the patients. The researchers assume one of the major problems in international leprosy treatment is the one of public awareness and acceptance of patients, before and after cure.

 

The Present Study: Entree into the community and building patient confidence

There is difficulty in doing social science research at Kalaupapa. Although leprosy stigma may be a major problem in treatment, locally and internationally, and public acceptance of leprosy patients may be limited in some places; similarly, patient acceptance of the curious researcher is also limited. The problem of entree into the community is a major one, as it is in all kinds of research concerned with minority groups. Of course, a few Kalaupapa residents are always eager to speak to newspaper reporters or researchers, however, the majority of Kalaupapa patients do not wish to be researched or considered as subjects. Indeed, many patients consider themselves to be subjected or disenfranchised, held in check historically and presently in a kind of quasicolonial status by the Hawaiian government. Thus, the political, ideological, and ethical concerns of the 128 Kalaupapa patients made it imperative that the social scientist be sensitive to the community needs as perceived by the patients. In addition, although research clearance to work at Kalaupapa was first obtained from the administrators of the community leprosarium (the Hawaii State Health Department), final approval rested with the patients themselves. Clearance had to be obtained from the elected representative body of Kalaupapa patients, the Kalaupapa Patients' Council.

The Kalaupapa Patients' Council reviewed the research, and finally participated in the formulation of the research questionnaire administered to community residents. This was only fair. The Health Department also had input into the research, as well as contributed some monies to the project from the Lani Booth Estate. But the patients' input was special. Not only did they suggest research questions I would have never thought of, they also facilitated the inception and acceptance of the project within the community.

Thus, the research project was introduced and sanctioned at a community meeting with almost half of the residents in attendance. The Chairman of the council personally introduced me to each member of the community— the introductions and the first sixty interviews took about a year and a half. We did not rush our work within the settlement.

Patient cooperation with the research project also highlighted some other aspects of my work within the...

Produkt-Details

• Erscheint lt. Verlag: 18.2.2013
• Sprache: englisch
• Themenwelt: Geisteswissenschaften ► Geschichte ► Regional- / Ländergeschichte
• Themenwelt: Studium ► Querschnittsbereiche ► Infektiologie / Immunologie
• Themenwelt: Studium ► Querschnittsbereiche ► Prävention / Gesundheitsförderung
• ISBN-10: 1-62287-263-0 / 1622872630
• ISBN-13: 978-1-62287-263-3 / 9781622872633