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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

Whose History Is It?

Perspectives on the ways leprosy history gets written and the viewpoint it represents.

The history of leprosy is multifaceted. At the simplest level, it can be thought of as having three distinct but interwoven strands.

It is a history of a particular microorganism and of its medical discovery, and of the efforts to combat and cure the disease it causes. It is also a history of government and non-government agencies, including religious groups, and of their intervention in health care. Most significantly, it is a history of a group of people whose individual lives and place within their family, community and nation is affected by a specific, typically stigmatizing disease.

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Patient records at a former Brazilian hospital-colony: documents such as these are one of a historian’s resources

Historians and other academic researchers engage in each aspect of this history to a greater or lesser extent, depending on their area of research and expertise. But in most instances, these three aspects of leprosy factor in the researching and writing of histories.

DRAWN FROM ARCHIVES

In writing of the history of leprosy in south India, for example, my own work* focuses on the 19th century British colonial period and draws primarily from government archival materials located in the Tamil Nadu State Archives, the National Archives of India and the India Office Records in London.

Understanding of medical treatment of the disease is drawn from public department records in the Indian archives but also from a range of medical journals, including those published in the Madras Presidency, and from Siddha Tamil texts relating to the traditional medicine of south India.

The book’s effort at accessing and presenting something of the lives and experiences of those with leprosy during the 19th century is limited by the nature of the resources available. It strives to demonstrate the agency of leprosy-affected people in their interactions with the government and other organizations and with the development and implementation of treatment regimes.

However, there is little trace of their experience and history except through the reports of the colonial archives. The raw materials of the history of patient experience are not offered directly by those affected by leprosy but through the voices and interests of the colonial medical and government officers.

How to discover and hear the voice of people affected by the disease is a critical issue.

POWER RELATIONSHIP

This problem of how to discover and hear the voice of people affected by the disease is a critical issue in any writing of the history of leprosy. Without some effort to research and analyze the trace of the person in the archive, the histories become histories of medical systems and governance rather than of personal experience.

Anthropologists such as James Staples are less tied to the archive; personal interviews and prolonged personal contact with leprosy-affected people in Madras have given his work** a far clearer sense of the personal experience of the disease. Even so, as he indicates, such personal encounters and the histories gained through oral testimony are frequently also expressions of a power relationship, the researcher being the person with the resources both to record and preserve the historical ‘data’ of another’s personal experience.

How to access and communicate the history of leprosy as a human history drawing on materials from both the past and the present remains a central question for historians writing histories of leprosy.

Not only the method but the ethics of historical research must be considered in developing strategies for the preservation and study of leprosy as an aspect of human history.

In addition, historians have a critical role in teaching the next generation and showing that history does not have to be repeated. We do that partly by setting our own example, by being involved with people with leprosy, by not being afraid and by understanding that the core of the person is their humanity, not their disease. The fact that leprosy is a disease of stigma historically is not something which must become part of the future; it is completely unnecessary.

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AUTHOR: Jane Buckingham

Jane Buckingham is an associate professor with the Department of History at the University of Canterbury in New Zealand. This article is based on a paper she presented in Tokyo at the International Symposium on Leprosy/Hansen’s Disease History as Heritage of Humanity.

FOOTNOTES

* Leprosy in Colonial South India: Medicine and Confinement (2002)

**In particular, Leprosy and a life in South India: Journeys with a Tamil Brahmin (2014).