A visit to Bergen’s Leprosy Museum provides an important lesson from the past and a message for our present day
By Lori Ann Reinhall, Seattle-Bergen Sister City Association
It came up on the top of the list of “Norway’s quirkiest museums” in a recent rating by the travel editor of the Norwegian edition of The Local, and it isn’t recommended by Rick Steves in his travel guidebook for Scandinavia. Yet a visit to Bergen’s Leprosy Museum proved to be both interesting and insightful, a lesson in cultural history and an inspiration for our own time.
The history of St. Jørgen’s Hospital goes back to Nonneseter convent in the 1400s, where patients came to receive plants for food and medicine. It was opened to the public as the Leprosy Musuem in 1970 and is now run by Bymuseet i Bergen, the Bergen City Museum foundation, which operates several museums throughout the city.
The museum’s inconspicuous wooden buildings surround a courtyard in the heart of Bergen and can easily be missed by passers-by. Once inside, however, visitors enter another world from days gone by: apart from an herb garden added in 1990, the buildings and grounds look much the way they did when the hospital closed its doors when its last two patients passed away in 1946. With their deaths, the story of leprosy in Bergen was unofficially closed, although the legacy of the work of pioneering researchers lives on until this day for a disease that still afflicts thousands worldwide in 54 countries, with 2,743 cases reported the World Health Organization in 2016. Even today, there are still a few isolated cases in the both the United States and Norway.
Upon arrival at the museum, I was greeted by my guide, historian Grete Eilertsen, who has been employed there for the past eighteen years since graduating from the University of Bergen. Grete commands an in-depth knowledge of the history of the leprosy in Bergen and surrounding areas in Western Norway. Leprosy most likely came to the European continent with Crusaders returning from Asia Minor and the Middle East in the 1200s and begin to wane in the 1500s — but not in Norway, which saw the highest concentration of the disease in Europe in the 1800s. It is unclear whether the climate, a low standard of living with poor hygiene and malnutrition, or even a genetic predisposition in the population led to this situation.
But what became clear by the middle of the nineteenth century was that something had to be done to alleviate the misery and the threat that leprosy posed to overall public health. With the rise of National Romanticism and a new Norwegian identity, the conditions of the peasantry came to the forefront, and one of the most comprehensive health programs in the history of the country was put into place. Bergen became a center of research on the disease, and in the second half of the century, three leprosy hospitals were operating there, St. Jørgen’s the oldest and only remaining of them.
The suffering of those hospitalized at St. Jørgen’s Hospital , “de spedalske,” as they are referred in Norwegian, cannot be exaggerated. In later stages of the disease, those afflicted suffer unsightly skin lesions, eye maladies, respiratory failure, nerve damage, and finally, severe disfigurement of the limbs. Grete tells me that some tourists arrive at the museum expecting to find a freak show of hideous wax figures, disappointed to only find the modest accommodations of the patient ward.
Others wonder why there has been no effort to spiff things up with a fresh coat of paint. But things remain much the same as when the facility closed by intention, so that visitors can relive the experience of those who quietly lived out their days there. The small but clean rooms where they slept have been set up with photos and placards that tell their story. One is struck by the simplicity of their quarters and impressed by an atmosphere of piety and devotion.
The stigma of leprosy goes back to Biblical times and lived on well into the beginning of the twentieth century. One of the early leading Norwegian authorities on leprosy, Dr. Daniel Cornelius Danielssen (1815–1894), maintained that the disease was hereditary, which led to social stigma, disgrace and isolation for the afflicted and their families.
It was not until the work of Dr. Gerhard Henrik Armauer Hansen (1841–1912) at St. Jørgen’s that this belief was dispelled. Dr. Hansen identified the bacillus that caused the disease in 1873, and it was established once and for all that leprosy was a communicable illness, although not highly contagious. This was a major medical breakthrough, and subsequently, leprosy is known as Hansen’s Disease in many parts of the world.
Another important development in understanding the disease was the government’s implementation of the world’s first national patient registry in 1856, the Norwegian Leprosy Registry, in which health officials collected the medical records of all patients throughout the country. This consolidated data repository still proves to be useful to contemporary leprosy researchers.
In its day, protocols developed at St. Jørgen’s Hospital effectively controlled the disease, where patient lived in an atmosphere of compassion and dignity. With advances in modern medicine and the discovery of antibiotics, the disease is now curable with a six to twelve-month course of treatment, yet the suffering prevails in countries with poor hygiene and nutrition as well as lack of access to healthcare. Even today, in some places those afflicted are still depised and shunned as outcasts.
These days, Bergen’s Leprosy Museum has become a destination for the city’s schoolchildren, as they learn about a way of life far-removed from the world in which they live. In today’s oil-rich Norway of iPhones and shining Teslas, it is difficult to imagine the hardships and poverty of the nineteenth century, even harder to imagine a disease so disfiguring and debilitating with no prospect for a cure — yet there is an important message of empathy and humanity to be learned. As Grete Eilertsen points out, even in today’s society, the disabled face discrimination, isolation and ridicule. For us, St. Jørgen’s message of love, compassion and social responsibility is still relevant, as we work to provide care and support for those less fortunate, both at home and around the world.