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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

A NEW APPROACH

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Kathryn M. Tanaka

“Leprosy opens more windows onto the past than any other disease,” Professor Luke Demaitre remarked in his keynote address at Leprosy and the ‘Leper’ Reconsidered. This observation could be extended to argue that leprosy, or Hansen’s disease, in fact opens more windows to think about discrimination and exclusion in the present as well as the past, Kathryn M. Tanaka writes.

In a time when U.S. news commentators evoke “leprosy” together with “smallpox, rabies, and HIV” as a menace associated with migrant populations, it is clear that the stigma persists and the disease has powerful associations with perceived threats to society today. In that sense, an interdisciplinary and global conference on the subject of Hansen’s disease was long overdue.

As a scholar of Japanese literature, there were several features that I found particularly useful about this conference, which I attended to present work done for Professor Yukiko Araragi’s grant project, “Polyphonic Approaches to Leprosy Problems: New Research for the ‘Era of Reconciliation’.”

First, I was impressed with the recurring themes brought forward by Hansen’s disease that connected disciplines as diverse as medieval European history and modern Japan cinematography. Of course, research into changing forms of discrimination and exclusion are a part of Hansen’s disease research as a whole, but this conference helped highlight other, less-considered parallels.

An example would be the iconography of Hansen’s disease in religious discourse. Many presenters discussed the religious significance of this in Catholic theology, and Professor Susan Burns introduced some parallels in the Buddhist traditions of Japan during her keynote lecture. Gender was another common theme of the conference, and several presenters such as Dr. Lucy Barnhouse and my own work explicitly foregrounded the gendered experience of Hansen’s disease.

Furthermore, as a whole the papers represented an important shift in the study of Hansen’s disease that I found particularly important and inspiring. Rather than strictly historical or theological approaches to the subject, the papers all shared an interdisciplinary approach that incorporated an element of anthropology.

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Conference emphasized "commonalities between scholars” working on leprosy in fields not normally brought together

This was very exciting to me; it marks a new approach to Hansen’s disease studies across disciplines, informed by post-colonialism. Rather than focusing on the institutions themselves, or medical and governmental treatment of those with the disease, the papers were united in their focus on the people who were diagnosed and living with the illness, and social responses to Hansen’s disease as human experience.

For example, Professor Aleksandra Pfau introduced remission letters from 15th century France, typically written by those seeking the king’s pardon and remission for a crime. While formulaic, some of these letters made mention of the illness and the authors’ experiences in the community and in hospitals, which Pfau used to introduce the complexities of community responses to Hansen’s disease and the fluidity of treatment and diagnosis.

This approach was echoed in the presentation by Professor Keri Inglis, who read letters, memoirs and introduced oral histories to describe the ways in which people diagnosed with Hansen’s disease imagined their community and the landscape of their institution.

What emerged was a multifaceted examination of Hansen’s disease through history and around the world that emphasized the commonalities between scholars working on the illness in fields that are not usually brought together. Moreover, by breaking down academic barriers through a focus on the person affected by the disease, this phenomenal collection of presentations may prove to be an important step in shifting public attitudes and discourse that continue to evoke Hansen’s disease as a threat to the social order, despite the availability of a medical cure.

Kathryn M. Tanaka is a tenured lecturer at the Faculty of Historical and Cultural Studies, Otemae University, Japan. Her main area of study is Hansen’s disease literature, in particular the ways in which community is created in literature by people who have experienced the illness. She is currently completing her book, Through the Hospital Gates: Community in Japanese Hansen's Disease Literature.