Last year, the government enacted legislation to compensate families of former Hansen’s disease patients for the suffering they endured as relatives of a group that was the target of discrimination in the 20th century. Former patients themselves were compensated by the government in 2001 and, later, 541 relatives sued the government, for recognition of their own hardship, in Kumamoto District Court, which found in their favor in June last year. The government decided not to appeal, thus paving the way for the legislation. Anyone acknowledged by the government as being a parent, child, spouse, sibling or, in some cases, in-law of a Hansen’s disease patient qualifies for compensation, even if they did not participate in the lawsuit. 

However, just as the 2001 apology and compensation did not suddenly make former patients welcome in society, the new legislation does not automatically lift the stigma from their relatives. Most of the plaintiffs choose to remain anonymous because they still fear ostracism. After having institutionalized that discrimination for decades through the Leprosy Prevention Law, enacted in 1931 and not rescinded until 1996, the government’s about-face goes only so far in inculcating a similar change-of-attitude among the general public. Japan isn’t the only country where such prejudices continue. Jan. 26 has been named World Leprosy Day in order to provide better information about the disease. Laws by themselves do not always erase such prejudice, but several media outlets in recent weeks have tried to address it.

NHK’s radio show, Shin’yabin, featured one of the plaintiffs on its Jan. 21 installment. Nobuko Harada, 76, was 7 years old when her father was diagnosed with Hansen’s and forcibly taken to a sanatorium, where he was isolated from the population. It was the early 1950s, when a cure for leprosy, which it was still called at the time, was available. Moreover, medical professionals knew that leprosy was not as communicable as it was once feared to be, and that the chances of the wider community contracting it from an infected person were slim. Nevertheless, the myth of “lepers” easily passing the disease to others, whose flesh would then “rot” (also not true), persisted in Japan and was exacerbated by local governments that were encouraged to compete for the most patients they could round up. 

Harada described how neighbors shunned her family and classmates bullied her at school after her father was taken away. Her mother, forced to support the family alone, lost her job and was reduced to selling wild plants she collected in the mountains. After Harada left school, she told no one about her father. She married, but her husband frequently assaulted her, blaming her family for the fact that he wasn’t being promoted at work.

The ostracism didn’t end after 2001. Harada told her colleagues about her past and they stopped talking to her. She eventually joined a group of Hansen’s patients’ kin because it was the only place she could find comradeship. When some of the members decided to sue the government, she participated, allowing her name and face to be used openly to publicize the suit because without doing so she could not hope to “properly convey my feelings.”

On Feb. 17, MBS Radio aired a program centered on Sawako Watari, who directed a documentary about the history of Hansen’s in the Osaka area. She had attended an annual Hansen’s symposium in Osaka on Feb. 15, where the prevailing sentiment was skepticism over whether the court victory would translate into greater tolerance. She interviewed another plaintiff who elected to reveal his identity. Hwang Gwang-nam is a second-generation Korean resident and the first non-Japanese to ever secure a civil servant position in Japan.

When Hwang was 1 year old in 1956, his mother and sister were diagnosed with Hansen’s and taken to a facility. Hwang himself was put in an orphanage, though his father and other sister were not institutionalized until later. Following treatment, the family was reunited when he was 9, but due to the separation he had formed no “proper relationship” with them. As an ethnic Korean and the child of Hansen’s patients, he faced double discrimination. However, his family refused to talk about it. He himself didn’t discuss it until after he turned 50. In 2003, his mother committed suicide at the age of 80, and Hwang believes it was over remorse at having abandoned her children when she was young, an act that resulted in a cascade of guilt that has plagued Hwang ever since. No matter how old the patient or the affected family member, the suffering never goes away because society is always there to remind you that you don’t belong.

Another person Watari interviewed at the symposium chose to remain anonymous, even though she is in her 70s and has been estranged from her family for decades. Her father was taken away when she was a girl. She has still never told her husband or her children about him and spoke to the audience from behind a screen, apologizing for the secrecy. She still sees widespread prejudice and misunderstanding regarding the disease. 

The environment the government created by encouraging people to inform on neighbors suspected of being infected remains. Watari’s solution is to publicize stories of victims in order to show how misinformation came to bear on their lives in destructive ways. One of the best places to start is in schools. There are materials to fight Hansen’s misinformation available from the education ministry, but Watari says they seem to be gathering dust in storage rooms. What’s needed, she says, is the will to actively teach this history.

Such activism seems especially vital right now in the midst of the coronavirus emergency, which has necessitated a certain degree of isolation and limited interpersonal contact. Although there have been reports of virus-related discrimination both in Japan and overseas, it isn’t as widespread as the prejudice brought to bear on Hansen’s patients and their families due to better access to the facts. However, that doesn’t mean society has learned its lesson. 

In a time of both misinformation and too much information, quality journalism is more crucial than ever.
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