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BOOK REVIEW | Kingdom of the Sick: A History of Leprosy and Japan, by Susan L. Burns

Separating fact from hype, the review takes a deeper look at how Japan has treated infectious disease patients over the years, and how this relates to the country’s guarded approach to the COVID-19 pandemic.

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Amabie, the mythical creature that protects from pandemics.

“What’s past is prologue…” The Tempest, William Shakespeare

Culture and the Coronavirus Pandemic

In early 2020, Western countries closed their borders, banned group activities, and ordered citizens to “shelter in place” in response to a contagious respiratory virus first identified in Wuhan, China. Following the West, much of the rest of the world shut down, too.

As a result, global economic activity dipped precipitously into recession. The International Monetary Fund stated that annualized global economic growth was in negative territory, at -3.2%. In raw numbers, the U.S. Congressional Research Service reported that, among the 7.8 billion people on the planet, 114 million jobs were lost, 95 million people entered into extreme poverty and 80 million more people were undernourished

What’s more, “voluntary” as well as mandated restrictions on travel and association have decimated mental health. In coping with increased stress due to isolation and uncertainty, many Americans turned to drugs and alcohol. Compared to 2019, deaths related to illicit drugs increased by about 30% in the United States. At least 60% of American adults reported increased alcohol consumption in 2020.

But the virus and lockdowns took a toll differently in different cultural settings. For example, while many Americans displayed abundant signs of stress in 2020, the number of suicides in America was lower compared to 2019. 

By contrast, after eleven years of decreases the number of suicides in Japan increased in 2020. Most of Japan’s measures to control the spread of the novel coronavirus were polite requests rather than ham-fisted government orders. Nonetheless, social isolation related to control measures could have had a significantly greater psychological impact on the Japanese compared to, for example, their Western counterparts.

Identifying cultural differences in responding to social isolation is certainly worthy of further exploration, as this could help us identify and protect vulnerable groups in multicultural populations in the future, should social isolation become more common.

Kingdom of the Sick

At the early stages of the novel coronavirus pandemic in 2020, the Japanese government’s response was denounced by the global media as “slow” (“slow-motion train wreck”), and others wondered if Japan had a plan at all.

Hearing such laments, one wonders how Japan handled previous outbreaks of diseases. 

Susan L. Burns — Professor of History, East Asian Languages and Civilizations at the University of Chicago — has done a tremendous service in addressing this question. Her book Kingdom of the Sick: A History of Leprosy and Japan (University of Hawaii, 2019) is a thoroughly engrossing history of Japan’s response to leprosy (also known as Hansen’s disease) over the centuries. 

Burns examines a period stretching from the feudal era to the revocation of the Leprosy Prevention Law by the Diet in 1996, and the Kumamoto District Court’s 2001 decision that the Japanese government infringed on the rights of leprosy patients (raisha) by confining them to sanatoria.

There are parallels between the way the foreign media has blamed Japan for its coronavirus response and the way that Japanese historians have denounced Japan’s treatment of leprosy patients. Indeed, Burns notes that much of the Japanese literature on leprosy is “denunciatory history,” and that this history is “no longer open to question.” The denunciatory history, for example, states that the Leprosy Prevention Law of 1907 was a “tool of a fascist state in the making” and that Japanese prewar leprosy laws were the same as “eugenicist policies of Nazi Germany.”

Burns herself was a supporter of the denunciatory view until she carefully investigated the facts. For example, Burns notes that not all leprosy patients in Japan were permanently confined in sanitaria following their establishment. It would have been safe and easy to take the black-and-white, victims’ perspective of the history of leprosy in Japan, but Burns rejects this and argues for:

“a more complicated and nuanced understanding of how the policy of quarantine took form, one that acknowledges the long premodern history of the disease and the powerful role of civic actors and international norms in the late nineteenth century, one that sees the Japanese state as less a cohesive agent than a collection of competing interests, and one that rejects the conclusion that the desire to eradicate a disease equates to a desire to eradicate those who suffer from it.”

Burns’ call for nuance is buttressed by the recent context of leprosy activism. When a group of raisha filed suit in Kumamoto District Court in 1998, they were one of numerous other victim groups suing the Japanese government for apologies and compensation during the 1990s, Burns notes. 

Other groups included the “so-called comfort women,” “Korean and Chinese forced laborers,” and “non-Japanese A-bomb survivors.”

AP Illustration/Peter Hamlin

The Social History of Leprosy in Japan

We know today that leprosy is a mildly infectious bacterial disease with an extremely long period between infection and showing signs of disease, often between five to twenty or more years. However, as in other pre modern cultures, leprosy in Japan was not scientifically understood. 

Burns notes that the earliest mentions of a leprosy-like skin disease in Japan appear in the eighth-century Chronicles of Japan (Nihon shoki) and the ninth-century legal commentary Ryōgige. In Japan, leprosy was first thought of as a form of “karmic retribution in this life,” the “numerous external lesions and significant disfigurement” marking raisha with “their own misdeeds.”

This stigma remained, but feudal era leprosy patients, while viewed as outcasts, were not entirely excluded from society. Raisha were to be cared for by family, but those who had no family, or who were rejected by family or else decided to self-segregate to spare their family further shame, aggregated in and around several shrines and Buddhist temples. 

Raisha were allowed to beg for alms on the grounds of the “important and influential Buddhist temple” Zenkōji, of Nagano. They could also “collect dues from those who sold their goods,” and were responsible for “caring for those who fell ill on temple grounds and for disposing of the bodies of those who died there.” While raisha were tasked with “base” work, such as the disposal of dead animals and humans, they were nonetheless an integral part of Japanese society.

Raisha were certainly of low social status, but they did not appear to consider themselves helpless victims. At one point, raisha in Nara vehemently objected to being compelled to do base work. 

Domainal officials in Sendai attempted to restrain raisha begging for alms, but the leprosy patients responded with an appeal, invoking both mythic association with the Imperial line and what could be called civic nationalism. When the Meiji government abolished outcast status categories in 1871, some raisha coalesced in Kusatsu, a hot-spring resort where the waters were said to cure leprosy. 

Raisha bought property and built businesses, riding the economic wave arising from foreign as well as domestic visitors.

Japan Self Defense Force Hospital prepared well for coronavirus victims

Treatment, Not Castigation

During the eighteenth century, leprosy was less and less seen as a sign of heavenly punishment. Instead, diseases in general were understood more as “somatic sign[s] of flawed behavior and the transgression of social norms.” 

Leprosy was thought to stem from a “flawed diet, overindulgence in sex and other kinds of immoderate behavior.” We moderns may dismiss this as blaming the victim. Three hundred years ago, physicians formulated “cures” and early pharmaceutical companies (patent medicine peddlers) sold them for “a hefty price and considerable pain and suffering.” On occasion there were adverse effects, including deaths. Similarities between the patent medicine business then and today’s global pharmaceutical industry may cause us to rethink our “denunciatory” view of leprosy treatment in Japan in the past.

In the late nineteenth century, the fledgling Meiji government established “relief facilities” for members of what they called the new urban poor, including raisha, who were often otherwise left to their own devices. For raisha, relief was apparently limited to food and shelter. 

During this period of financial instability, in 1874 Masafumi Gotō, a physician specializing in kampō (traditional Chinese medicine) with a keen interest in “discovering a cure for leprosy,” petitioned the Meiji government to fund a “system of leprosy hospitals that he would direct” and to “make use of a treatment regime that he had developed.” Burns records that Gotō had earlier established a private clinic in what is now Shinjuku ward in Tokyo, devoted specifically to the treatment of leprosy. Gotō provided medication, sometimes at no cost, and allowed patients to fully participate in their own convalescence, the “healthier patients helping those less able.”

Gotō was not a philanthropist, as his side business consisted of selling his (pricey) proprietary medicine. Yet, despite Gotō’s dubious claims of curing leprosy, the Tokyo Metropolitan Government funded Gotō’s “leprosy hospitals,” as this fit with the Meiji government’s plan to modernize, or Westernize, health care. 

Gotō’s publicly funded leprosy hospitals were a new approach in caring for leprosy patients. The leprosy hospitals were funded for a few years until national austerity set in. 

In fact, as Gotō’s case makes clear, the Meiji government had little, if any, interest in leprosy at the time. It was medical entrepreneurs and their journalist allies — advertisers, to be more precise — who began to shape public perceptions of the raisha and their disease. Burns notes that “newspapers became the discursive site where leprosy was first transformed into a social issue, where claims of its curability were celebrated, and where a chorus of voices began to call for government action to aid in the new project of leprosy relief.”

Doctors on the Science Council of Japan deeply affected Japanese policy during the first 20 months of the pandemic.

Competing Interests, Conflicting Voices

Scientists and physicians were active components of Burns’ “collection of competing interests” surrounding the leprosy problem. These experts gave the “chorus of voices” about leprosy an (ostensibly) scientific basis. But as we have learned anew over our COVID years, experts vary. 

For example, bacteriologist Shibasaburō Kitasato claimed at the International Leprosy Conference in Berlin in 1897 that “leprosy is spread almost equally across the Japanese empire, with no difference between coastal and mountainous areas,” giving the impression that leprosy was widespread in Japan. This assertion was not supported by survey data, however. In effect, Kitasato pandered to his European audience, which already believed that leprosy in Japan was extensive.

Thankfully, more responsible experts were also on hand. Physician-scientist Keizō Dohi countered in his presentation at the same Berlin gathering that Kitasato’s “estimations were wildly inaccurate and exaggerated the real extent of disease.” Dohi “noted with pride” that Japan had been able to reduce leprosy, within a rapidly expanding network of private and public institutions, and without the “coercive segregation such as was practiced in medieval Europe.” Such “coercive segregation” was staunchly advocated by Europeans and some Japanese at the time.

The so-called segregationists in Japan favored measures taken by Western countries (“a global wave”) of isolating leprosy patients to, for example, remote islands, and restrictive immigration to keep foreign leprosy patients out of Japan. One segregationist, Diet member Dr. Masatsugu Yamane, “claimed that foreign newspapers ‘laugh at how we deal with [leprosy sufferers]’” and supported disease control measures such as doctors reporting those with leprosy to state officials for registration and isolation. 

Other disease control measures included disinfection of raisha dwelling places by the authorities, forbidding unauthorized travel, and banning raisha from many social activities and professions. Yamane supported such restrictions and called raisha “unproductive.”

However, there were others, such as Seitarō Kubota, director of the Bureau of Hygiene, who rejected isolation. Kubota also rejected Yamane’s proposal to include leprosy under the Law for the Prevention of Infectious Diseases of 1897. Kubota argued that “diseases like tuberculosis and syphilis [were] a greater public health threat than leprosy,” and that “public health priorities must reflect domestic needs.” 

Kubota further argued that “rather than quarantine, research to cure or control disease was the best means to improve the health of the Japanese people.” Kubota championed the building of sanitoria to help raisha instead of isolating them. 

He offered this insight: “While leprosy was an infectious disease to be sure, whether one came to be infected or not depended upon one’s physical makeup.” Kubota was not a physician, but his insights were later proven correct.

All aboard the Diamond Princess were quarantined when Japan first encountered COVID-19

Past Is Prologue

The debate over what to do with leprosy patients in Japan became more polarized in the twentieth century. Segregationists parroted the medical paradigms of the West, while anti-segregationists appealed to Enlightenment notions of individual rights and public welfare. Burns shows that Japan’s leprosy policy was shaped both by Japan’s experience with leprosy over the centuries and by European thinking.

This hybrid approach can be seen, for example, in the fact that while Europeans segregated male and female raisha, Japanese officials eventually took the pragmatic view and allowed intimate relations and even marriage. When it was later found that a small percentage of children from these unions developed leprosy, men were given the choice of sterilization and women were allowed to have abortions, at a time when abortion was proscribed in Japan. 

Burns highlights the big national debate in Japan over abortion and male sterilization for leprosy patients, contrasting this with the West’s widespread use (or abuse) of sterilization to achieve social objectives. Japan followed its own path, contrary to what purveyors of the “denunciatory” history have claimed.

The media and today’s medical historians have yet to make the connection, but perhaps Japan’s experience with leprosy has shaped its current guarded approach to the novel coronavirus. When memories of victim groups of the past and Japan’s recent experience with mass vaccination are taken into consideration, this should be understandable. 

Reading Burns’ outstanding volume certainly makes the parallels stand out. During the coronavirus pandemic, the West imposed segregation in the name of public health, and Western media members, government officials, and unelected bureaucrats stoked fear of and loathing for the unvaccinated

The question now is as it was during the Meiji period debate over leprosy: will Japan follow the Western model of coercion and fear mongering, as found in denunciatory histories, or think back on her past and adopt measures that reflect domestic needs?

ABOUT THE BOOK

Title: Kingdom of the Sick: A History of Leprosy and Japan

Author: Susan L. Burns)

Publisher: University of Hawaii Press, 2019

ISBN: 978-0824879013

Formats: Print/hardback

To Learn More: Visit the publisher’s web page for the book at this link.

To Purchase the Book: The book may be purchased directly from the publisher here, or on Amazon here, and at other booksellers.

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Author: Dr. Aldric Hama

Aldric Hama works in the biomedical sector and lives in Shizuoka Prefecture. He received his PhD in anatomy and cell biology from the University of Illinois, Chicago and ever since has worked with various pharmaceutical and biotechnology companies.