Never let history of discrimination against leprosy patients fade away

It will soon be 20 years since a court ruled that it was unconstitutional for the government to have a quarantine policy for leprosy patients. This anniversary should be an opportunity to reflect on the issue in order not to repeat the history of discrimination and prejudice against people with the disease.

On May 11, 2001, the Kumamoto District Court ordered the government to pay a total of ¥1.8 billion in compensation to 127 plaintiffs, including former patients at national sanatoriums for people with leprosy, who claimed that their human rights were violated by the government’s isolation policy.

It was significant that the hardships suffered by former patients were brought to light for the first time, leading to apologies by the government and the Diet and the clarification of the actual damage to them.

Leprosy, also called Hansen’s disease, is an infectious disease caused by the Mycobacterium leprae bacteria that affects peripheral nerves and the skin. It is not very contagious, but even after drugs helped cure patients, the isolation policy continued for about 90 years until the Leprosy Prevention Law was abolished in 1996.

The thorough isolation policy had reinforced the misconception that it is a dreadful infectious disease. Some former patients were forced to use pseudonyms at sanatoriums and others were forced to undergo sterilization or abortions. The grave fact is that the government’s policy severely damaged former patients and their families.

Even after the quarantine policy ended, many former patients had no choice but to remain at sanatoriums. This is because some were unable to return to their hometowns due to persistent discrimination against people with the disease, while others needed nursing care due to the aftereffects of their illness.

The average age of residents at these sanatoriums now exceeds 86, and their population continues aging. The number of residents at the facilities, which exceeded 10,000 at its peak, has dropped to about 1,000. It is necessary to maintain an environment from now on in which residents can live with peace of mind without isolating them.

Some associations for residents at sanatoriums have suspended their activities due to the aging of the population. It can be said to be an urgent task to arrange preparations to ensure that residents’ requests, such as for better treatment, are conveyed to the management at the facilities.

It is also vital to consider how to hand down the facts of the isolation policy to future generations. The number of people who can talk about their experiences is decreasing. Through measures such as fostering as storytellers the local residents who have interacted with the people involved, it is important not to let the story of this persecution fade away.

There are some sanatoriums that are seeking ways to coexist with local communities such as by inviting nursery schools onto their premises and making medical facilities there accessible to the general public. The central and local governments should support such efforts.

Ignorance about infectious diseases can lead to prejudice against people who have been infected. During the novel coronavirus pandemic, bashing and bullying of infected patients has become a problem.

The central government intends to set up a panel of experts to review its conventional awareness campaign activities for leprosy. The panel needs to identify the causes of long-standing discrimination and devise effective measures to deal with the matter.

— The original Japanese article appeared in The Yomiuri Shimbun on May 4, 2021.