Outline of the National Hansen’s Disease Museum and Our Earnest Desire
Prince Takamatsu Memorial Museum of Hansen’s Disease opened in June 1993. Later, it expanded the scale and reopened as the National Hansen’s Disease Museum in April 2007.
The establishment of the Museum was based on Article 18 in Chapter 4 of the Act on the Promotion of a Resolution to the Issues Related to Hansen’s Disease (enforced in April 2009). It says that the government shall promote public edification and dissemination of accurate information regarding the measures for the disease and take other necessary actions, including the establishment of a national museum and the conservation of historic buildings, to restore the dignity of patients and former patients (the rest is omitted).
The National Hansen’s Disease Sanatorium Resident Association (Zen Ryo Kyo) explains about this article that the purposes of the establishment of the National Hansen’s Disease Museum are specified as eradicating the prejudices and discrimination associated with Hansen’s disease and restoring the dignity of patients and former patients by promoting public edification and dissemination of accurate information regarding the disease but that what is really necessary to restore their dignity must be accurate information regarding the history of the measures implemented for the disease, although accurate information about the disease is still necessary.
The history of the measures against the disease in Japan started in 1897 when the proposal that the best preventive measure against Hansen’s disease was segregation was accepted at the First International Leprosy Meeting. This shortsighted idea th6at the disease should be eradicated by segregating all patients was the basis for the policy of absolute segregation, that is, the lifelong segregation of all patients. The Leprosy Prevention Law of 1907 was established to start the hospitalization of patients who did not settle down in one place and the amended Leprosy Prevention Law of 1931 was the basis for absolute segregation. On the other hand, an increasing number of people outside Japan in those days believed that segregation was not always required. The necessity of segregation was questioned in the early 1940s when the effect of promin was confirmed.
In Japan, however, although the effect of promin was recognized in a way, segregation was still believed to be necessary for fear of infection after a recurrence of the disease. Segregation was carried on automatically without justifiable reasons. Almost all former patients who wished to return to society had to do it by themselves. No positive support was provided. The difficulty was attributed to deep-rooted prejudice but almost no social edification activities were conducted. In 1995, Japanese Leprosy Association formally apologized for these erroneous policies at its general meeting in Japan but it was too late.
Today, we consider the patient-centered approach as the basic attitude for medical care. This history is nothing but the arbitrary execution of the exact opposite. It is quite natural that the exhibition at the Museum criticizes Kensuke Mitsuda who exercised leadership in the absolute segregation policy and the government that supported the policy as a national one.
However, such history of measures taken for the disease, you might think that Mitsuda and the government must be blamed, and you just felt sorry for the patients. Why do you think you are an onlooker and not responsible for it?
In January 1951, nine members of a family in Yamanashi Prefecture committed suicide by taking potassium cyanide because their eldest son diagnosed Hansen’s disease. This was extremely tragic. The youngest member of the family, a five-year-old girl, also took the poison because anyone left in the family would be ostracized in the village by the people who abhorred the disease.
More than half a century passed since this tragedy, and people share the knowledge of the disease, which is significantly different from the past one. Within a few days of starting treatment, Mycobacterium leprae lose their infectiousness. No infection and the onset of the disease is possible, unless an untreated patient and an infant repeatedly have close contact. In short, Hansen’s disease is a common disease that is safer than other chronic infectious diseases.
With the knowledge of the disease in mind, recall the family suicide in Yamanashi once again. This would never have happened if people had today’s knowledge because we know that staying together or living together with patients under treatment or former patients would cause no infection.
As stated before, the family in Yamanashi was forced to commit suicide because the head of the family could easily imagine how the residents of the community would react to the disease, that is, they would think it a hideous disease and they would avoid contact with it. Was his fear that the family would be hated by the villagers groundless? Can you say with confidence that he was overly concerned about the situation?
If you can’t, it means you are on the side of the villagers who would have tried to keep away from the patients and their families.
We hope that you can swear solemnly that you would never try to eliminate the patients, former patients, and their families. The National Hansen’s Disease Museum supports your oath. To help us support you, you need to come to the Museum. We look forward to seeing you here.
National Hansen’s Disease Museum