A History of Hansen’s Disease in Japan: the Isolation Policy as a Violation of Human Rights

leprosybannerSome months ago, I wrote a paper for Culture and Disability, an elective course in my Anthropology program. I took this course because, as you all know, I am very interested in the history of medicine (and in medical anthropology as a whole), in particular in the Japanese history of psychiatry and its relation to culture. One series that I publish here regularly is the history of mental health stigma in Japan (see part 1, 2, 3, 4, 5). While researching this topic, I noticed that it bears many similarities with how Hansen’s Disease (leprosy) patients were treated throughout Japanese history: some sources on mental health I read perceived both types of patients as similar victims of medical injustice. In this post, I will focus on the Isolation Policy, a law that prescribed the forced segregation of Hansen’s Disease patients in Japan and was only recently abolished. I selected the parts from my paper that I believe could be of interest to you and skipped my theoretical analysis, so this post is only a very general introduction to the topic of leprosy in Japan.


In May 2016, an extraordinary thing happened: the Japanese Supreme Court Chief Justice apologized for the discriminatory practices towards leprosy patients the court had engaged in (Japan Times, 2016). The apology was a reaction to the findings of an investigation, requested by former leprosy patients in 2014. Between 1948 and 1972, special courts were established at facilities for leprosy patients, based on the wrong assumption that Hansen’s disease is highly contagious. In trying leprosy patients outside of standard courtrooms, the Constitution’s principle of equality was violated and discrimination was fostered. The fact that news on leprosy in Japan is still featured on a regular basis, points toward the significant role played by policy stipulating the treatment of Hansen’s disease patients. But what exactly is Hansen’s disease or leprosy?

LEPROSY AROUND THE WORLD

Leprosy is a chronic, infectious disease caused by the bacilli Mycobacterium leprae. Also named ‘Hansen’s disease’ after the Norwegian doctor Gerhard Armauer Hansen who discovered and identified this specific bacterium as the cause of leprosy in 1873, both the terms ‘leprosy’ (raibyō 癩病[1] ) and ‘Hansen’s disease’ (hansenbyō ハンセン病) have been used in Japan, although the latter is strongly preferred in today’s discourse because of its neutrality[2]. In the long term, Hansen’s disease results in the formation of granulomas, or collections of immune cells, called macrophages. This is manifested in the growth and expansion of nodules, or lumps, and patches, or macules, on the skin and eyes, and eventually weakness, deformities and paralysis. The bacterium further affects internal functions such as the respiratory tracts and peripheral nerves. Patients experience a loss of sensation due to the weakening of the nervous system, and may damage their limbs.

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From World Health Organisation, Global Leprosy Strategy
2016–2020 (p. 3)

One of the misconceptions concerning leprosy is that the disease itself causes the loss of body parts, while it is actually the result of lacking the necessary motor functions and the sensation of pain, due to which the patient fails to notice injuries or infections (lepra.org.uk, 2014). Another, more serious common misunderstanding of the disease concerns the need for the isolation of the patient once he or she is diagnosed. Contrary to popular belief, a historical remain that was disproved by scientific discoveries in the twentieth century but is still prevalent today, leprosy is not highly contagious and relatively easy to cure with free multidrug therapy. Hence, isolation is in fact not necessary. Since the year 2000 globally, and in most countries from 2005, Hansen’s disease is no longer considered a public health problem. Yearly, thousands of patients have been treated back to health and over the past twenty years, this number has exceeded sixteen million around the world (WHO, 2016). Japan counts around 1,500 institutionalized patients and this figure continues to decrease (Ministry of Health, Labor and Welfare, 2016).

A HISTORY OF HANSEN’S DISEASE IN JAPAN

A wife and her leprose husband

Not much is known about how leprosy first came to Japan, but the disease appears to have been around since the eighth century. Already then, leprosy was regarded as “transmittable to those nearby (Kikuchi, 1997:629)” [3]. During the middle ages, ‘lepers’ were forced to live outside the community, sometimes creating their own leprosy colonies (Sato & Narita, 2003), and to beg for food at places of worship. This was morally justified by a common perception of hereditary ‘impurity (kegare穢れ)’ (Encyclopedia Nipponica, 2001). Leprosy was also regarded as a punishment in the next life for those who did not respect Buddhist sutras. Christian missionaries from Europe took an interest in leprosy patients, pitying their neglected and discriminated position as ‘discarded people’ in society, but were soon suppressed by the Edo government after it had banned Christianity in 1620. Hansen’s disease patients were even sentenced to death because of their religious affiliation with their benefactors (Yamamoto, 1993).

At the beginning of the Meiji period (1868-1912) there were more than 30,000 leprosy patients in Japan. Statistical surveys published numbers going between 23,660 leprosy patients in 1897 to 30,359 patients in 1900 (Goto, 2011: 99), although these numbers are probably underestimated since statistical methodology was still in its infancy at that time (Kikuchi, 1997). A 1898 report on the situation in Japan, written by the United States Consulate, further specifies: “We learn that it is almost universally recognized by the medical authorities that leprosy is a contagious disease, and that the terrible disease is most prevalent where fish is most freely used as an article of food (Gowey, 1898:211)”. Ascribing the overconsumption of fish as a cause, on the one hand, is related to the belief that eating too much would result in leprosy. According to Burns (2012), “[a]lmost every text on leprosy included a lengthy list of foods to be avoided (p. 302)”. The presumed contagiousness of leprosy, on the other hand, corresponded with the ‘resolutions’ of the First International Conference about Leprosy, held in Berlin in 1897 (Pandya, 2003). This encouraged the Japanese attendees to pursue a segregation policy.

First Steps towards an Institutionalization of Leprosy Patients

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Patients at the hospital established by Hannah Riddell. Picture from Anglican History

Around the end of the nineteenth century, European missionaries, motivated by the same Christian values as their predecessors, began to establish facilities for leprosy patients in Japan. Father Testevuide from France was the first to open a relief center for Hansen’s disease patients in 1889, which he transformed three years later into Japan’s first leprosarium. Significant for Japan’s leprosy history is Hannah Riddell, an English missionary who established a hospital for Hansen’s disease patients in 1895. Yet, the movement towards institutionalized treatment was not limited to the endeavors of foreign missionaries. Leprosy had become a topic of medical discussions in eighteenth and nineteenth-century Japan, informed by western medicine. Already in 1874, esteemed doctor Gotō Masafumi had petitioned for the public funding of future leprosaria (Burns, 2012). Gotō claimed that the water therapy he had discovered was the best cure for leprosy. He founded a private hospital in 1872 to perform his leprosy treatment, but inspired by European examples (he suggested that European states had eradicated leprosy by establishing public leprosaria), he aimed for a similar system on a national scale. Eventually, Gotō received funding and his hospital in Tokyo officially became a ‘leprosy ward’.

This is surprising, since the doctor could not show much evidence of the effectiveness of his treatment. It is, however, explicable with the Japanese political situation in mind: after more than two centuries of isolation from mainstream society, the Meiji revolution marked the beginning of a new era. Being forced to open up its borders by the western powerful states and to sign unequal treaties, Japan was desperate to present itself as a modern, strong and civilized nation and prove to the world that it had left its ‘barbarian’ past behind. To succeed in this, it promoted western knowledge, including medicine[4], and European policies, such as the establishment of leprosy hospitals[5]. Additionally, the Japanese press responded to the desire for progress and compassion by painting Gotō as a heroic Samaritan. Hence, to solve the problem of Hansen’s disease, ‘a national shame’ in comparison to an almost leprosy-free West, the government only became actively involved in the treatment, or rather containment, of the disease when it believed its future prospects were being threatened by leprosy patients and other ‘dangers’: “Public health and medical policy, it was argued, by linking individual health to the economic well-being and political security of the nation valorized the vitality and productivity of the citizenry and rendered the poor, the weak, and the sick as dangerous “others” who threatened the Japanese nation and empire (Burns, 2012: 298)”.

The Leprosy Prevention Law

In other words, the Japanese government at first did not show much interest in tackling leprosy between 1868, when Japan opened up its borders and underwent a process of modernization, and 1902. Due to a convergence of interests of both the Japanese government and certain physicians, the 1907 law concerning the prevention of leprosy (rai yobō ni kansuru ken癩予防ニ関スル件) was passed that ordered the creation of five publicly funded leprosaria to confine the ‘lepers’ starting from 1909. It must be noted, however, that it targeted especially leprosy patients roaming the streets and the poor, thus not those who were cared for at home, and whose supervision was the task of the police (Hirokawa in Wittner & Brown, 2015). Public safety was still prioritized over welfare: around the leprosaria were walls and gates, and two of the leprosaria were built on small islands. Pictures below show the leprosaria Tamazenshoen in Tokyo and Aiseien in Nagasaki (many more interesting pictures of Hansen’s disease hospitals today on leprosy.jp).

From the 1930s on, scientists started to doubt the necessity of compulsory segregation, since the mortality rate, infectiousness and chance of a sudden outbreak turned out to be lower than estimated. Nevertheless, the Japanese government strengthened its approach of isolation in legal terms: the Leprosy Prevention Law (rai yobō hō 癩予防法) of 1931 stipulated the forced segregation of leprosy patients. Between 1929 and 1934, a movement called ‘No Leprosy in our Prefecture’ (muraiken undō無癩県運動) and funded by the government, aimed to collect money for the establishment of leprosaria in each prefecture. This movement had laid the foundations for the 1931 law. The Hygienic Bureau of the Ministry of Home Affairs wrote in 1930 in a pamphlet titled Measure for the Eradication of Leprosy that “Japanese citizens are exposed to the extreme danger of leprosy infection” to justify their policy of absolute segregation. This time, the law was applicable to all patients, regardless of their financial status (Goto, 2011). Consequently, people who had previously been nursed at home, were now forced to move into a designated leprosarium.

While abroad isolation policies quickly came to be questioned due to scientific developments such as chemotherapy in the 1940s and epidemiological studies, Japan maintained its policy of strict segregation for decades (Sato, 2002). During the occupation of the Korean peninsula (1910-1945), the Japanese also enforced this policy among the occupied population (Sase e.a., 2004). The Leprosy Prevention Law was revised in 1953, but maintained its policy on leprosy: mandatory segregation, prohibition to leave the institution and punishment – often imprisonment – for those who disturbed the peace (Yamamoto, 1997).

Maintaining Forced Segregation

Why did Japan persist in its policy of segregation, even when it became openly criticized during international conventions from the 1950s on? It has been suggested that since the number of leprosy patients in Japan and its colonies was relatively small (compared to the one million tuberculosis patients at that time), obligatory confinement was introduced simply because it was possible (Goto, 2011). It was maintained, then, to avoid policy changes. Since more than 90 percent of leprosy patients was hospitalized without the possibility for rehabilitation by the 1960s, the switch towards outpatient services was deemed too difficult and had low priority (Sato & Narita, 2003). The revision of the Leprosy Prevention Law in 1953 was based on the expert advice of three leprosarium directors, who – unsurprisingly, and despite patients’ protest – attested in favor of compulsory isolation (Sato, 2002).

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Promin medicine – Picture from Ehime Prefecture site

Moreover, segregation from healthy Japanese people was still prioritized over the well-being of the patients in question: mainly poor people such as farmers on the countryside suffered from Hansen’s disease, and they could not afford treatment at the few university hospitals located in the big cities (Goto, 2011). The spread of leprosy medicine, especially Promin at that time, was also lagging behind in Japan. Furthermore, patients who had been hospitalized for most of their lives ended up as depending on their institutionalization, since they had nowhere to go outside of the leprosarium: outpatient treatment or other services were very scarce to informal – not to mention the stigmatization patients would experience from the Japanese people they had been hidden from. In short, because Hansen’s disease patients had been rendered invisible for many years, there was no need and much reluctance to change or undo the established isolation policies.

The Abolition of the Isolation Policy

In the years after the revision of the Leprosy Prevention Law, the strict rules of the isolation policy were slightly loosened[6], but the law remained in force until its abolition in 1996. In the process towards an abolition of the law that had forcibly separated them for decades, leprosy patients, united in the Federation of National Leprosarium Patients (zenkoku kokuritsu rairyōyōjo kanja kyōgikai 全国国立ライ療養所患者協議会), played an important role. The federation requested a revision of the law, based on the scientific knowledge that Hansen’s disease did not require compulsory segregation, which was a violation of their human rights and fostered stigmatization in Japanese society.

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A Hansen’s Disease patient reads braille with his tongue due to a lost sense of touch in the fingertips – Book with Pictures called “90 Years of Segregation” by Tada Junichi

Nevertheless, Sato (2002) points out that the patients’ voices were divided over the existence of the Leprosy Prevention Law: on the one hand they perceived themselves as victims of the law, on the other hand they did not want to lose the care and housing the government was legally bound to provide them with due to that same law. Hence, the federation decided to lobby in favor of an improvement, not an abolition. The leprosarium directors as well as the Ministry of Health and Welfare were reluctant to put an abrupt end to the law because of the reasons mentioned above: the directors feared for their hospitals, and the ministry saw the transformation of leprosaria into rehabilitation centers as financially unfeasible.

One central figure in the abolition of the Leprosy Prevention law was Fujio Ōtani, chairman of the Tofu Society (Tōfū  Kyōkai藤楓協会[7]). In 1990, he started the establishment of a National Hansen’s Disease Museum, which was completed by 1993  and organized public symposia that attracted media attention. With the abolition of the law in mind, Ōtani also created a study committee and started to meet patients. He took their wish to continue living at the leprosaria into consideration. Based on the committee’s report, it was publicly acknowledged in 1995 by the Japanese Leprosy Association, the Federation of National Leprosarium Patients and the Federation of Leprosarium Directors that leprosy did not request compulsory segregation and that the law fostered stigma. One year later, the law was terminated, without endangering the existing services leprosaria offered. Patients could stay as long as they wished[8]. The minister of Health, Labor and Welfare officially apologized for the delayed abolishment. The same year, the Federation of National Leprosarium Patients changed its name to the Federation of National Hansen Disease Sanatorium Patients, since it was argued that the term for leprosy (rai) triggered social stigma.

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“We won the lawsuit” – the isolation policy was abolished in 1996

After thirteen patients had sued the government for its unconstitutional policy in 1998, a law was introduced in 2001 that made it possible for Hansen’s disease patients to receive compensation for their suffering. In that same year, the prime minister apologized for the continued violation of leprosy patients’ human rights. The most recent legislation on Hansen’s disease dates back from 2008:  the Law for the Acceleration of a Solution of the Hansen’s Disease Problem (Hansenbyō mondai no kaiketsu no sokushin ni kansuru hōritsu ハンセン病問題の解決の促進に関する法律) stipulated that national leprosaria a) could not discharge patients against their will b) should provide the necessary treatment and facilities and c) should share the use of their land, buildings and services with the local community. Moreover, the state should take measures to restore the honor of leprosy patients, establish and maintain the national Hansen’s Disease Museum and historical buildings, and promote the spread of correct knowledge on Hansen’s disease and Japan’s policy history in order to honor deceased patients.

THE ISOLATION POLICY AS A VIOLATION OF HUMAN RIGHTS

In 1952, Hansen’s disease patient Matsuo Fujimoto was charged with murder and sentenced to death in a ‘special court’, since it was believed to be too dangerous to bring leprosy patients into a non-isolated court. Fujimoto’s arrest and trial was by many perceived as unfair and unconstitutional: it was one of the many forms of discrimination that patients experienced due to the long-standing isolation policy and social stigma. During the same period, leprosy patients held demonstrations against the revision of the Leprosy Prevention Law that still prescribed forced segregation. In July and August 1953, Hansen’s disease patients protested in every national leprosarium, in front of the Senate and in the corridors of the Ministry of Health, Labor and Welfare. Led by the Federation of National Leprosarium Patients, voices protested against compulsory isolation, the prohibition to leave the leprosarium, disciplinary restraint, eugenic surgery, the lack of privacy, the impossibility to start or maintain a family, and the continued use of the discriminatory term ‘leprosy’ (Inaba, 2011).

leprosy special court

A special court for Leprosy patients – picture from Mainichi Shimbun

Discrimination inside the leprosaria

During the 1940s, patients were forced to work due to a shortage of staff, food and other resources (Aoyama, 2010). Residents engaged in farming, agriculture and other forms of production to supply all leprosarium patients and were also actively involved in administrative matters[9]. Before the end of the war, male and female patients had to live apart, regardless of their marital status. Later, sexual intercourse was allowed, but couples experienced a complete lack of privacy on that account. The first houses for couples were built from the 1950s on (Kikuchi, 1997). Since children from leprosy patients were perceived as a ‘burden’ to the hospital[10], birth control was implemented. Male patients often underwent a vasectomy, and abortion was exceptionally allowed by the state in case of leprosy. No permission from the patient was needed.

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staff treating a patients

Human right infringements also included a lack of medical treatment: not the employees of the leprosaria but the patients themselves had to take care of each other, despite the fact that the many blind and physically impaired residents were in high need of professional assistance. It was only in 1963 that leprosaria started to employ nurses. In 1954, the Federation of National Leprosarium Patients protested heavily against this problem, abandoning their tasks at the leprosarium, demonstrating on the streets and occupying the ministry of Health, Labor and Welfare for five days. This nationwide movement eventually led to the slow transition of replacing patients’ nursing tasks by duties for personnel. Taking the aspects of life at the leprosarium mentioned here into account, it is clear that Japan’s Leprosy Prevention Law resulted in a serious infringement of the patient’s human rights.

Eugenics

One of the discriminatory practices Hansen’s disease patients had to endure for decades, was the application of eugenic measure, most prominent in its form as institutionalized sterilization and abortions: not only in Japan, but worldwide, “[p]erceived and ascribed disabilities of body and mind were one of the core sets of eugenics traits that provided the basis for institutionalized sterilization on eugenic grounds for the first 75 years of the twentieth-century (Wilson & St. Pierre in Devlieger e.a., 2016: 93)”. As mentioned before, forced vasectomy for male patients and abortion for female patients was the standard procedure at leprosaria. In Japan, eugenic policies became popular in the twentieth century, especially from the 1930s on, an era characterized by imperialism and national pride (Otsubo & Bartholomew, 1998).

leprosy eugenics

Japan followed the example of Germany in pursuing a eugenic policy during WWII

At first, eugenic activity targeted the racially ‘impure’, but was soon redirected towards people with mental illness, hereditary and infectious diseases. In March 1940, the National Eugenics Law (kokumin yūsei hō 国民優生法) was passed. The law encompassed both positive eugenics (encouraging healthy citizens to procreate) and negative eugenics (preventing ‘unhealthy’ people to procreate). In 1948, the National Eugenics Law was replaced by the Eugenic Protection Law (yūsei hogo hō優生保護法), which allowed abortion in certain cases, such as leprosy. This law was eventually discontinued in 1996.

Right-based activism

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Protest march against the discriminatory medical treatment of Hansen’s Disease patients

These forms of institutionalized discrimination sparked right-based activism in 1970s Japan (Hayashi & Okuhiro in Addlakha, 2009). The lawsuits against the government filed as a direct result of the movement in the 1990s, was clearly inspired by the early campaigns in the 1950s. Arrington (2014) indicates that this activism for the rights of (ex-)leprosy patients in Japan inspired similar right-based movements in South-Korea and Taiwan. By 2001, the number of plaintiffs in Japan had risen to almost thousand, and a network of hundred lawyers represented them. Reminiscent of the patients’ stance in the process towards an abolishment of the Leprosy Prevention Law, some patients opposed the lawsuits since they were afraid to lose the care and housing benefits provided by the state. Nevertheless, until this day, (ex-)patients and their families, with the support of thousands of Japanese people, are fighting against the human rights infringement they suffered.

Today, most patients with Hansen Disease are over eighty years old and the number of newly diagnosed patients is negligible. It is most likely that leprosy will cease to occur in Japan in the near future. Yet, attempts in the past to eradicate the existence of leprosy patients has now been reversed: the law of 2008 clearly states that the history of leprosy patients and the discriminatory policies they were subjected to, should be remembered and passed onto future generations. The establishment of the National Hansen’s Disease Museum, for example, is an indication of this objective. Another way to honor the memory of mistreated Hansen’s Disease patients is through a revaluation of leprosy literature in Japan: many patients produced literature (mostly poetry) inside the leprosarium and, doing so, created a whole new genre. But that’s something I will write about another time!

Footnotes

[1] Already described in Japan’s oldest history books, rai refers to a collection of skin diseases. (Weiner, 2009: 10) [2] Both terms will be used interchangeably here with no distinction between nuances. [3] Apparently, this was the first document worldwide to claim so. [4] It should be noted that western medicine was not simply copied but rather integrated into traditional Sino-Japanese medicine. Gotō, for example, subscribed to the ‘traditional’ school but his work and writings were informed by western discourse while he maintained a Sino-Japanese approach in therapy and etiology. [5] A similar case is the promulgation of institutionalization laws for mental health patients, which was based on the same impetus to show legal maturity towards the West (Suzuki, 2003: 199). [6] For example, patients were now more free to leave the institution. [7] Established in 1952, the Tofu Society was a reformation of the Leprosy Prevention Association, founded by Empress Teimei. [8] The importance of this decision is illustrated by the fact that only six patients left their leprosaria in the next two years after the abolition (Koh, 1999). [9] Aoyama (2010) argues that because patients were part of the organizational and administrative structure of the facility, they could strengthen their position in negotiations and slightly improve their living circumstances. [10] Children of leprosy patients also experienced stigmatization: In 1954, patient’s children, although not affected by Hansen’s disease, were denied schooling by the parent-teacher association.

Reference list here