Preserving the History of Leprosy
Eliminating leprosy is an important goal, but so is ensuring that records survive.
Dr. Jo Robertson is Research Officer for the Global Project on the History of Leprosy, an initiative of the International Leprosy Association, funded by The Nippon Foundation. The project, which began in October 2001, is developing a database of locations where leprosy archives can be found in order to facilitate historical research into leprosy in the period after 1800. It is based at the Wellcome Unit for the History of Medicine at the University of Oxford.
What is the purpose of the project?
This project is dedicated to ensuring that the history of the work done against leprosy is not forgotten and that the voice of the person affected by leprosy is heard. The strategy is to create and develop a database of references to historical documents; build an infrastructure for future research that will attract and encourage researchers across the world to undertake work on the modern history of leprosy; and include references to existing collections of audio and video interviews relating to leprosy so that pathways will be created for researchers interested in the personal voice.
Anwei Law from IDEA is working on the oral history side of the project, where the strategy is to develop advice to assist others to undertake oral history work; instigate networking among oral historians interested in leprosy; and give some initial assistance in cases where valuable particular individual histories are in danger of being lost due to age or illness.
How did you become involved?
My doctorate In a State of Corruption: Loathsome Disease and the Body Politic is on the representation of leprosy in colonial Queensland. I started my doctorate as a result of the documents that I saw in the Queensland State Archives. The correspondence and reports about people who had been isolated on islands off the coast of Queensland were extremely moving, and I could not understand why I could not find any voices that objected to the isolation of these people.
Why is this work important?
As the campaign to eliminate leprosy moves toward achieving its goal, leprosy work is being integrated into general health services. As this happens, the concerted and specific work that has been developed and spans more than two centuries will move into a different phase.
Time will only tell if leprosy will ever disappear, but if the transition into the general medical health service is not successful, it is not inconceivable that the skills and knowledge gained against the disease may some day need to be revived. Without careful management, however, this knowledge is in danger of being lost.
Even though published research work is easy to access, the records that provide a more detailed picture of that research may not be available to future researchers because the copious data that has been compiled will have been discarded.
Independently of medical research priorities,leprosy also provokes many questions of political, social, cultural, national, and international interest, making the preservation of records an imperative if these issues are to be explored.
Above all, this is a disease that has caused misery for 3,000 years. As it fades away, we mustn't allow a record of that human suffering to be lost, so that future historians can interpret the significance of this milestone for mankind.
There are many impressive collections of records and it is hard to single out any one.
Do many historical records exist, and which in particular stand out?
So far our database has over 200 sites where substantial repositories of historical records can be located, and there are many more that have been identified, but not yet added to the database. There are many really impressive collections of records, and it is getting extremely difficult to single out any one collection.
What is interesting is how it is possible to see a “story” ― one facet of the leprosy story ― emerge out of a simple list of documents that are held in a single collection. In addition, when the collections are put together, it is also becoming possible to trace the larger story of leprosy in single countries and also internationally.
One of most exciting finds has been the wonderful collection at the Gandhi Memorial Leprosy Foundation in Wardha, Maharashtra, India. The foundation was established in 1951 and prided itself on taking an “entirely different approach to the problem of leprosy.”
The plan was to select a small area for control and eradication work; to examine every individual and put all leprosy patients on oral DDS; to follow their contacts; to undertake repeated surveys for finding out new cases; and to segregate infectious cases wherever and whenever possible either in villages, homes or colonies.
The records from this collection tell an amazing story of Indian responsibility for leprosy work and there are so many facets of this story that need to be told, not least of all the stories of the paramedical workers who went out into the villages to administer medication and also the stories of the people in the villages who were both involved in this work and were also recipients of treatment. As far as I'm concerned the paramedical workers were heroes at the “cutting face” of leprosy.
In this instance, the compound at GMLF, Wardha, and most of all, the people who have been associated with this work, provide indispensable insights into that story. In this case, the archive is much more than documents ― it is a living one.
Dr. Jo Robertson: dedicated researcher
What impact is the project having?
Although there is much more to find and add, the database has attracted a good deal of attention and has begun to stimulate historical research.
The website itself has already attracted many visitors, some of whom have made contact with the project and indicated that they have embarked on history projects. These include academic researchers in countries as diverse as Colombia and Taiwan. Some are established scholars while others are postgraduate students looking for projects to research for doctoral and masters dissertations.
The website is also increasingly attracting requests from the general public for information about leprosy in addition to offers of assistance from those who have direct experience of leprosy work in many different parts of the world. Offers from China, Japan, the Philippines, and from Yemen (for the Arab and Islamic countries) are some of the most recent.
Do you notice many differences from country to country in the way people with leprosy were treated by society?
Not really. Isolation of people with leprosy seems to have been widespread, with similar effects, worldwide. As a result of my work for the project, I've had the opportunity of visiting some of the places where people with leprosy have been isolated. People still live in these places, their lives and those of their descendants irrevocably affected by the leprosy control policies of the past. Cuttack in Orissa, India, for example, has well-established communities of second and third generation people.
What advice do you have for people who may have access to records or be in a position to contribute to the project?
It is vitally important for people who have worked in the field to preserve the documents that have resulted from that work so that its existence can be documented on our database. Those who have been involved in leprosy research and leprosy control, may have compiled material of importance for the writing of a history of the disease. Primary documents such as organizational, policy, scientific and medical reports, photographs, film, and correspondence are all of great value to history researchers. I hope people who have had experience of leprosy will take this opportunity to put their experiences on record.
Anyone who would like to make a contribution to the work of the project should contact Dr. Jo Robertson (Research Officer) at the following address:
ILA Global Project on the History of Leprosy
Wellcome Unit for the History of Medicine
45-47 Banbury Road, Oxford, OX2 6PE
Tel: +44 1865 284628
Fax: +44 01865 274605
● The modern history of leprosy studies began in 1847 with the publication in Norway of Om Spedalskhed (About Leprosy) by Daniel Cornelius Danielssen and Carl Wilhelm Boek. In the early 19th century, Norway had the most leprosy patients of anywhere in Europe.