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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

MUSEUM: History as Dialogue

Bergen's Lepramuseet plays a key social role in a nation famously linked with leprosy.

Around the second half of the 19th century, Norway, and specifically the city of Bergen, was a world center for leprosy research. It was here that Danielssen and Boeck published the first modern study on leprosy in 1847; that a register of leprosy patients was established in 1856 (the first national register of a disease anywhere in the world); and where in 1873 the bacillus that causes leprosy was discovered by physician Armauer Hansen, after whom the disease has come to be known in many countries.

At one time, Bergen had three leprosy hospitals and the largest concentration of patients with the disease in Europe. The oldest of these hospitals was St. George's. Dating back to 1411, its last two patients died in 1949.

Today, St. George's houses The Leprosy Museum of Bergen. The site consists of 10 buildings that date back to the 18th century, of which the main building and the church are open to the public.

When it was established in 1972, the museum focused on Norway's contribution to leprosy research and the successes of its medical men, with Hansen as its number one artifact. Run by the Faculty of Medicine at the University of Bergen, it presented the expert view of leprosy. Where patients featured at all, they were represented in photographs showing severe cases of the disease, without personal biographies or historical context. The museum was often described as "obscure" or "scary."

In 2003, the museum underwent a transformation. We decided that the "expert monologue" should be replaced by a dialogue with visitors. While it remained important to acknowledge Norway's contribution to leprosy research, it was also important to show the human cost of the disease and to pose questions. In addition, we felt that the exhibitions should be secondary to the historical nature of the site itself, so we removed all modern fixtures from the central areas and decided to use natural light as much as possible.

In its current form, the museum continues to tell the institutional history of leprosy, and the medical achievements that are so special to Bergen. But this information is now in the background, conveyed in non-expert language.

In the foreground are persons affected by leprosy, individuals who formed the hospital community. In each of the 12 rooms that make up the exhibition space, one person is featured, combined with contemporary sources. No images are presented without some kind of personal context. There is no "curator's voice."

Talking point: the plaque listing names from Norway's leprosy register

TOUCHY ISSUE

The last people to contract leprosy in Norway were diagnosed in the 1950s. To all intents and purposes, leprosy is a disease that has been eradicated from the country. Nevertheless, leprosy remains a touchy issue. Even if people are no longer infected by the disease, they are still affected by its history, and contact us to find out about topics that have been silenced in their own families.

One of the talking points at the museum is a large plaque with the names of more than 8,000 people who were diagnosed with leprosy in Norway. The names were taken from the national leprosy register. We thought about whether this was the right approach. Were we not perhaps re-victimizing people by listing their names in this way? But it was very important to us not to cite only a number - 8,231 - but to show that these ere actual Norwegians.

It is interesting to see what kinds of reactions there are to this exhibit. A lot of people write in our guest book that it is thought-provoking and moving. It has become clear that it triggers discussions among visitors, and between visitors and museum staff, about the disease and the people it infected and affected.

To me, a museum is a function of a democratic society. Bergen's Lepramuseet is part of Norway's history, and people have the right to access their own heritage. We are a social institution and have a role to raise social questions. This is not a place where people are met only with answers.

AUTHOR:Sigurd Sverdrup Sandmo

Sigurd Sverdrup Sandmo is the curator of The Leprosy Museum in Bergen, Norway.