Author’s manuscript from: We shall bear witness: life
narratives and human rights. Eds. Meg Jensen, andMargaretta Jolly. University of Wisconsin Pres, 2014.

Justice of Listening: Japanese Leprosy Segregation
Michio Miyasaka

1. Human rights abuse and Japan’s leprosy segregation
Human rights relating to illness are quite often counter-intuitive. There is a need tocarefully examine whether the stigmatic experiences of patients in certain contexts constitutean unjustifiable human rights abuse, or whether the abuse becomes legitimized in suchcircumstances. Leprosy—or Hansen’s disease—has been associated with stigma since ancient
times, because, of course, for centuries no cure existed. However, there is insufficientunderstanding of how this stigma continued to threaten and trample human rights in modern
times. With regard to infectious diseases, such as leprosy, tuberculosis, severe acuterespiratory syndrome, and influenza, the medical and political debate has continued to focus
on the legitimacy of liberty-limiting interventions, especially patient isolation. Althoughisolating patients with infectious diseases is not universally considered wrongful conductfrom a medico-ethical perspective, forced isolation can constitute a human rights abuse when
it is implemented in excess of the permitted degree, without adhering to the specified
conditions.1 Japan’s leprosy control policy exemplifies this type of excess implementation,and it took several decades and lawsuits against the country for the policy to gain widespreadsocial recognition as a form of human rights abuse.
One way to evaluate human rights abuses surrounding illness focuses on the “lived
experiences” of afflicted patients. Lived experiences often include details about the severityof their suffering within a unique set of circumstances—to which healthy people are little
sensitized. Another crucial approach is to concurrently examine the logic of the “perpetrators.”
Human rights abuse surrounding illness is occasionally implemented by the very persons
expected to aid patients—medical practitioners and policymakers. They are obligated to act inways suited to the characteristics of the illness as well as to the medical, legal, temporal, andsocial contexts surrounding it. Thus, the ethical legitimacy of their actions must bequestioned.
Lifetime isolation
In 2001, the Kumamoto District Court made a landmark ruling that the isolation policy
and its legal basis, the Leprosy Prevention Law, had violated the fundamental human rights
guaranteed in the Constitution of Japan. The next year in 2002, I made my first visit to the
National Leprosarium Kuryu Rakusen-en. This leprosarium was located on a beautiful plateau
with quiet, green surroundings. My impression corresponded with the worldview presented inThomas Mann’s The Magic Mountain. In Mann’s story, the character Hans Castorp visits a1

tuberculosis sanatorium where his cousin is being treated. This highland sanatorium’s worldis extremely different from the outside world. Hans, a visitor to this dizzying world,
eventually gets infected and becomes a resident of the sanatorium. Like many other patients,
he is unshaken by his fate and accepts life in the isolated world he finds himself in. Similarly,
the residents I met in the leprosarium also seemed to have accepted the confined lives thatthey had been forced to lead for years.
However, according to the patients’ writings, admission to Kuryu Rakusen-en was far
from the calm process described in The Magic Mountain. As a newcomer to the “Hansen’sdisease problem” after the Kumamoto ruling, I knew that a large number of patients’ writingsand interviews were archived in various forms. Some had been published by major publishinghouses, others by each leprosarium or its patients’ association (jichi-kai) as in-house journals
and booklets with small-scale circulation. Trial records and government documents including
patients’ testimonies were also accessible. The majority of the patients’ writings andtestimonies include sentimental descriptions about a variety of topics including leaving theirfamilies, losing personal relations with friends and colleagues, and giving up their plans forliving a full and normal life. As if that were not enough, when leprosy patients experienced
forced isolation, they were often treated with hostility. During the first half of the 20th century,
when the majority of patients were detained, they were treated like criminals. For example,
one patient describes how, during transportation to the leprosarium, he alighted from the train
at a station and awaited a vehicle. While waiting, his attendant drew a chalk circle around him
and ordered him not to step outside the circle. He was not permitted to sit on a station benchor drink water.2
From a medical ethics perspective, the isolation of patients is legitimate if their diseaseis highly infectious, the symptoms are severe, and the disease cannot be prevented or cured.
The debate over whether leprosy is an infectious or another type of disease (for example, ahereditary disease) ended in 1873, with the discovery of Mycobacterium leprae.
Nineteenth-century doctors became aware that leprosy is not highly infectious or fatal and thesymptoms do not worsen in all patients.3 Leprosy primarily affects the skin, peripheral nerves,eyes, and upper respiratory tract. The physical deformities that occur as a result have spawned
dread and horror in most places since ancient times. However, treatment for leprosy withsulfone drugs was established from the 1940s; therefore, eliminating the need to isolatepatients.
In spite of this, forced isolation of leprosy patients continued in Japan until the end ofth

the 20 century. Even though leprosy was treatable, the Leprosy Prevention Law, revised in2

1953, did not state any clear conditions under which a patient might be released. Therefore, if
patients were diagnosed with leprosy, they were isolated in a leprosarium and were notallowed to leave, even after they were cured. The continuation of this isolation policy was
linked with Muraiken Undo (literally, the No Leprosy Patients in Our Prefecture Movement).
In response to the government’s adoption in 1936, of a 20-year plan for the eradication of
leprosy, municipal governments in Japan encouraged citizens to find and report leprosy
patients to the authorities.4 As a result, by 1955, 11,057 people—an estimated 91% of all
leprosy patients—were admitted to leprosaria. Patients likened this isolation policy to Nazi
Germany’s policies to eradicate the Jews because they thought the aim was to solve theproblem not by eradicating the disease, but by eradicating the people with the disease.5 For
them, segregation was not only a “forced isolation,” but also a “lifetime isolation” that
continued even after a patient was cured.
Forced labor
The greatest difficulties in implementing lifetime isolation for all leprosy patients
occurred when patient numbers were the highest. There was no effective treatment for leprosy
until the mid-20th century; however, the illness was not fatal, and many patients survived until
they were middle-aged or elderly despite being physically disabled. Thus, the isolation ofpatients over many years entailed huge financial costs. From the end of the 19th century until
the early 20th century, several countries, India for instance, considered forced isolation, but
did not implement it. 6 Along with the morality of respecting patients’ rights ofself-determination, the cost was prohibitive. However, Japan’s policymakers attempted toovercome these financial hurdles by forcing patients to work for low wages. At the National
Leprosarium Tama Zensho-en, located in the suburbs of Tokyo, work for patients began on a
voluntary basis, with the leprosarium offering an incentive for patients to engage in work.
According to a survey conducted at this leprosarium in 1912, the patients admitted to thisfacility had worked in more than 70 professions such as farming, fishing, commerce,
blacksmithing, carpentry, stonemasonry, mechanics, printing, managing bookstores andrestaurants, and teaching. 7 At this leprosarium, these patients’ wages consisted ofcontributions from the leprosarium’s operating costs. Their wages were confiscated by theleprosarium to prevent, for instance escape, and then exchanged for vouchers that could be
used only within the leprosarium. In the 1940s, when Japan was involved in the war, there
was a severe shortage of resources, and patients had to maintain the leprosarium itself, partly
by caring for other patients. At the time, at Kuryu Rakusen-en, located in the mountains of the3

Gunma Prefecture, the most demanding work was allocated to patients. To save on
automobile fuel, patients carried 15–45 kg of charcoal for heating from a village 10 km away.
Although some patients injured the soles of their feet during this process, they remained
oblivious because of their sensory disturbance. A patient wrote that when he took off hisboots, the snow was stained red with the blood that gushed out.8
Sterilization and abortion
The control policy of Japan’s leprosy differed from that of other countries because ofits measures for controlling reproduction among patients. The notion that leprosy patientsshould not have children was shared to a degree among those involved in patient care at thetime. Not only Japanese doctors but also foreign nationals working for the salvation of
leprosy patients in Japan held this opinion. British missionary Hannah Riddell, who opened
Kaishun Hospital, a private leprosarium in Kumamoto, stated that men and women should be
separated.9 However, Japan’s doctors asserted that physically separating men and women
was unrealistic. Instead, doctors in Japan used sterilization and performed vasectomies onmale patients. This strategy has often been attributed to eugenics, which had gained
popularity in the medical world at the time;10 however, doctors believed that sterilization wasin the best interest of the patients themselves. In 1915, Kensuke Mitsuda, the Director of the
National Leprosarium Nagashima Aisen-en, performed the first vasectomy on a male patientat that leprosarium. According to Mitsuda’s memoirs, this patient had great respect for
Mitsuda. Despite having deformed fingers, the patient gained admission to Zensho-en bybinding a pen to his fist to write the application letter. At the time, he was nearly 50 years old,and he married a woman he fell in love with at the leprosarium. Mitsuda asserted that thispatient requested a vasectomy and depicted this situation in an idealized way as love between
patients that does not involve children.11 In his opinion, retaining sexual desire and functions
while preventing children from being born was a benefit that doctors should provide toleprosy patients.
This control of reproduction had a serious impact on the lives of many patients. One
female patient related her tragic experiences in an interview.12 She said that she became
pregnant prior to her husband undergoing sterilization. When she was seven months pregnant,
she was summoned by the leprosarium’s doctor. At the time, abortions were legally permitted
up to eight months into the pregnancy. She said that she wanted to consult her husband first,
but the doctor refused to allow her to do so. Following the operation, a nurse showed thewoman the still-alive fetus, saying, “What a cute girl—she looks just like you!” The nurse4then smothered the fetus’s face with a piece of gauze, suffocating her. Several decades later,
this female patient remained unaware why the doctor and nurse acted in such a manner. By
the time this woman and other female patients reached old age, it became legal for them toleave the leprosarium. However, there were no children or grandchildren to greet them in theoutside world, and this discouraged many women from leaving.
Arbitrary punishment
Leprosy patients voiced their dissatisfaction to staff over their poor treatment inleprosaria. However, in the context of the time prior to the Second World War, theircomplaints were suppressed through physical force. This consisted of punishments extended
beyond the rule of law and were left to the doctors’ discretion. Doctors working in leprosaria
were agitated about the police’s insufficient action against disobedient patients. Therefore,
they petitioned the government to establish a designated prison for leprosy patients; however,their request yielded no results. When the Leprosy Prevention Law was revised in 1916,
leprosarium directors were granted police authority. Among the various punishments forpatients, the most severe was confinement in a kankinjo (guardroom) built in each
leprosarium and the reduction of meals. In addition, doctors set up a special prison at Kuryu
Rakusen-en where they could mete out the harshest punishments to patients. While these were
officially called Tokubetsu Byoshitsu (literally, special sickroom), in reality, these were
prisons without any heating facilities, without light, and from which patients did not easily
emerge alive. Many of those imprisoned died in winter, when the snow lay thick on corridors
open to the sky between the eight cells of Tokubetsu Byoshitsu. The room temperaturesometimes dropped below−3° or 4°F. According to records, between 1939 and 1947, 93
people were imprisoned. Among those, 22 died either during imprisonment or shortly after
release.13
Tokubetsu Byoshitsu has subsequently been discussed as a symbol of human rights
abuses by patients seeking changes in the leprosy control policy. However, none of thesurvivors of Tokubetsu Byoshitsu have spoken about their experiences. This may be acommon phenomenon observed in those who have suffered extreme duress. Survivors ofTokubetsu Byoshitsu left few records and would not discuss their experiences even privately
with patients they were close to. Only written testimonies of those who had contact withformer prisoners are available. For example, Michita Yamai was a working gaffer at a
washhouse in Tokyo’s Tama Zensho-en.14 Although the patients worked in boots, many of5the boots provided were old and tattered. It was difficult for leprosy patients with sensory
disturbance to endure wet feet; therefore, the patients requested that the boots be exchanged
for new ones. This request, which was denied, was made to leprosarium officials by gaffer
Yamai. After the denial of this request, the patients decided to go on strike. Yamai was taken
into custody by 20 officials and sent to Tokubetsu Byoshitsu. Yamai’s tearful wife pleadedwith the officials for forgiveness; however, they responded by imprisoning his wife as well.
Yamai was imprisoned on June 6, 1941 and released on July 18. Upon his release, he wasextremely weak and unable to walk. He died on September 1.

2. Writing for human rights
People can now learn about the patients’ ill treatment by reading their experiences inbooks and court records. However, we need to focus on the audiences. As Catherine K.
Riessman states, “[E]vents perceived by the speaker as important are selected, organized,
connected, and evaluated as meaningful for a particular audience.”15 What types of audiences(actual and supposed) have the patients’ writings reached? Did a specific audience exist fromthe outset? Unquestionably, for Japanese leprosy patients, their lived experiences have served
to report the realities of human rights abuses. Although survivors of Tokubetsu Byoshitsu did
not record their experiences, many other leprosy patients continued writing in the closed
world of the leprosaria. Their activities began during the era of Japanese imperialism, when
freedom of speech was not guaranteed. Some accounts were written as diaries and letters in an
everyday context, some were written as petitions to leprosaria managers and the government
in a legal context, demanding revisions to the law, and others were written as novels or poems
in a literary context. Patients’ writings were active enough to give rise to the genre of “leprosy
literature;” however, the writings left a gap between the patients and their audience—between
those who recorded real-life accounts and those who read or listened to them.
Crying for human rights
Patients who had been isolated in leprosaria for extended periods and who were forced
into harsh labor began voicing their dissatisfaction. At the time, most patients nationwide
were admitted to leprosaria; therefore, the number of isolated patients exceeded leprosaria
capacity. According to the aforementioned memoirs of Mitsuda, in the National Leprosarium
Nagashima Aisei-en in Okayama, approximately 1,200 people had been admitted by 1936, in
6spite of the facility’s capacity of only 890 patients.16 This overcrowding became a causative
factor in what was later called the Nagashima Riot. On August 11, 1936, 90 patients appealed
for wages, which had been cut, to be restored to their previous levels. This led to a dispute,and the patients convened a meeting in a chapel, following which they made four demands:(1) improvement in their living conditions, (2) a raise in reward for their services, (3) theformation of a patients’ association, and (4) mass resignation of employees. On the morningof August 13, approximately 800 patients abandoned their work and went on strike. Someeven broke windows and commenced a hunger strike. The incident was widely reported; as aresult, the necessary funds were provided to raise the wages and deal with the overcrowding.
Although the formation of a patients’ association was refused because the National
Leprosarium Nagashima Aisei-en was a public facility, patients were granted autonomous
control over labor and stores. This event was historic in modern Japanese medicine andmarked an important achievement; patients mobilized to assert their rights and, to a certain
degree, achieved their goals.
Triumph of doctors over patients
After the Second World War, with the guarantee of freedom of speech and assembly
included in the new constitution, the patients’ rights movements increased and became moreorganized. Their demands were centered on Promin, a sulfone drug used to treat leprosy. In
poverty-stricken postwar Japan, the government attempted to reduce the budget for Promin,but over 140 patients began hunger strikes in their asylums.17 This drug, developed in a US
leprosarium, is highly effective and has been nicknamed the “Miracle of Carville” after abook written by a female patient.18 Obtaining this drug should have allowed patients toobtain freedom from their lives of isolation in leprosaria. However, this was not the case.
Arguments regarding leprosy drugs between patients and doctors resembled a political, not a
medical, dispute. This manifested itself in the offensive and defensive maneuvers surrounding
revisions to the Leprosy Prevention Law in 1953. In the Diet, three leprosaria directors
testified about the need to maintain (or strengthen) forced isolation. Patients surrounded theDiet Building and staged a sit-in, demanding the easing of forced isolation, while someengaged in a hunger strike.19 The patients presented their case on the basis of scientificevidence. They correctly argued that leprosy is treatable and, in fact, is not even highly
infectious. In contrast, the doctors’ arguments were largely political. Mitsuda gave thefollowing testimony to the Diet:

7

We must act quickly in admitting the remaining patients, but there are many who refuse.
Under the current circumstances, it is not possible to forcibly admit these kinds ofpeople. In this respect, we need to revise the law. If we do not invoke state power in thismatter, the situation will remain unchanged for many years to come and infections
within households will continue unchecked.20
Eventually, the doctors’ demands were accepted into the 1953 revisions to the Leprosy
Prevention Law. As before, the law promoted forced isolation, prohibition from leaving
leprosaria without permission, and punishments for rebellious patients. In spite of leprosy
being curable, rules for patients’ discharge from leprosaria were not clearly set out in the law.
The great gap between Japanese experts and international experts is revealed in records fromthe 7th International Leprosy Congress, held in Tokyo in 1962. At this congress, two main
points were discussed: (1) common knowledge on early detection, early treatment, andambulatory treatment, and (2) the abolition of laws prescribing forced isolation. However, abureaucrat from the Japanese Ministry of Health and Welfare, speaking on behalf of thegovernment, stated that “While the peak for infections has passed, there are many patients stillat home who have not been admitted who are acting as a source of infection. Therefore, it isdesirable for them to be admitted at an early stage.”21
Leprosy literature
Even though the voices of patients’ were silenced by those of powerful doctors andbureaucrats, patients still managed to write about their daily experiences in a range of forms.
Despite often being denied of public education, leprosaria patients were taught how to writeby volunteers. Thus, they were encouraged to indulge in creative writing. In particular, many
engaged in literary writing, which even formed a discrete literary genre called “leprosy
literature.”22 Whether explicit or implicit, their literature was thematically based on patients’experiences of their illness. Their writings included lived experiences of the illness,
elucidating many aspects of the patients’ lives, such as their lives before and after arriving at
the leprosarium, family partings, harsh experiences at the leprosarium, experiences that led tothe discovery of joy and love, the deaths of other patients, and the deaths of family members
from whom they were separated. All these aspects were depicted with literary passion.
A poem composed in 1941 by an anonymous sixth-grade elementary student expresses
a theme that elicits sympathy—sorrow at being forever separated from family members.

8When it rained
My mother always
Roasted beans for me.
I hear the sound of the rain
Like beans roasting
And realize my mother is no longer by my side.23
How was this poem read? Or rather, who was the audience? Readers today would probably
feel a sense of realism and pity at how the sound of rain conflates with the sound of beans
being roasted by the child’s mother. At the time of this poem’s composition, outstanding
works from among the patients’ poems were selected by professional poets who provided thepatients with literary guidance. Yuji Kodama, a patient who later became one of the first court
plaintiffs to challenge the national government, continued writing poetry for many years. He
recalled the first time he met Mitsuo Ohe in 1952. Ohe was a non-patient poet who had
singled him out and with whom he had corresponded over several months. During their firstmeeting, Ohe muttered that he wanted to take Yuji to his home, but that it would be
difficult.24 Even though a few readers outside the leprosaria were sympathetic to the patients’plight, their sympathy was based on the assumption that the patients’ isolation was
unavoidable. Very few of the patients’ readers questioned leprosy’s supposed incurability andthe patients’ need for isolation in leprosaria.
Approximately three months before his death from intestinal tuberculosis in 1939,
Kaijin Akashi published Hakubyo, one of the most widely read leprosy literature poetry
collections. At the beginning of this collection, which sold 250,000 copies, Akashi wrote that“[l]eprosy fell upon me like a divine scourge.”25 However, when his illness became so severethat he was beyond recovery, he viewed it as a “divine revelation.” The reasons he gives are
as follows:
I was over 30 when I learned to write tanka26 and, as I reflected anew upon myself,other people and the world, I felt in my heart the beauty and the grandeur of existence.
In poem after poem, I released years of bitter hardship, sometimes weeping, sometimes
dancing for joy as I celebrated that spark of soul incarnate in my body.

9I gained such insight into the human condition that I became familiar with a love thatexists apart from the bonds of flesh. Only after I lost my sight did a vision of blue
mountains and white clouds flare up within me. 27
Akashi’s loneliness—metaphorically represented “like those luminescent fish dwelling in thesunless depths of the sea, I would not have light until I illuminated myself from within”28—
particularly resonated among Japanese readers. However, within this expression of autonomy
and endeavor to find value within oneself, readers observe an expression of acceptance of life
as a patient forced into isolation. Akashi’s graceful, poetic acceptance may have led readers(and some writer-patients) to forget that this harsh isolation was artificial and systematic.
In Tamio Hojo’s 1936 novel Inochi no Shoya (literally, The First Night of Life), of thenotion of striving to find values within oneself is depicted from a perspective closer to that ofoutsiders (non-patients). This short story is one of the most widely read works among thosewritten by leprosy patients. Hojo employs a first-person perspective to realistically depict ayoung male patient (somewhat autobiographically) during his first few days in a leprosarium,
when he is treated with indifference by the leprosarium staff. He closely observes other
patients and is shocked at the “faces like rotten pears” of those seriously afflicted by thedisease.29 The young man loses hope and tries, but ultimately fails, to commit suicide. A
patient who witnesses his attempt tells him that leprosy patients “are not human. They are life
itself.” This patient continues, “However, we are phoenixes. When we have new ideas or gain
new insights, when we obtain the life of a leper, this is when we are resurrected as humans.”30
In 1936, the novel was published in the influential journal Bungakkai and won the journal’s
prize for newcomers, a stepping-stone to success in Japanese literary society. Hojo took ayoung non-patient novelist Yasunari Kawabata, who won the Nobel Prize for Literature in
1968, as his literary teacher and wrote 66 letters to him. Kawabata recognized his talent andsent 24 responses, recommending that he read Dostoevsky, Tolstoy, and Goethe.31
Hojo’s work reached a high degree of excellence, which earned him acclaim frominfluential members of literary circles. As evinced by the fact that Hojo himself hated his
works being referred to as “leprosy literature,” the works of leprosy patients were ultimately
expected to transcend the genre. Hojo’s success and reputation, however, illustrates how
Japanese society responded to the “life-writing” and its representations of the “lived
experiences” of patients. Susan L. Burns pointed out the gap in attitude toward leprosy
literature between writers (patients) and readers (critics).32 According to a former patient
Hiroshi Shima, one of the patients who sued the Japanese government, “writing was the only
10

means to pass beyond the walls of the leprosarium.” In contrast, Otohiko Kaga, a non-patientnovelist stated in 2002, “...since it is extraordinarily rich, I thought, isn’t this a great gift toJapanese literature. In ‘Hansen disease literature,’ there is the style that burst out of the bodiesof those who were sick.” Burns questioned Kaga’s attitude because “Here Kaga’s concern is
not to explain why patients wrote but the validity of labeling these texts ‘leprosy literature’and the significance of this genre for ‘modern Japanese literature.’”Audiences in judicial contexts
With the end of the Second World War in the 1940s and appearance of wonder drugs
in the 1950s and 1960s, did approaches to reading 1930s leprosy literature change? By theend of the 1940s, the effects of the sulfone drug Promin had been recognized. Patients
commenced movements demanding that they should receive the drug in response to revisions
made to the Leprosy Prevention Law in 1953; however, they suffered setbacks. One of thesewas caused by the case of a young male patient in Kumamoto, who was arrested as a suspect
in a murder case that occurred in 1952. The trial was conducted within the leprosarium as aprecaution against infection. Although the defendant continued to deny the murder charge andthere was insufficient physical evidence to implicate him, in 1962, the defendant was given adeath penalty on the basis of the unreliable testimonies of two witnesses and the defendant’s
statement, which the prosecutor is suspected of having forged. 33 This led to a social
movement seeking to ensure the patients’ right to a fair trial. In the 1970s, the therapeuticvalue of Rifampicin was recognized, and fewer leprosaria doctors kept patients isolated on the
grounds of contagiousness. In the 1980s, the World Health Organization promoted the use ofmultidrug therapy. As a result, leprosy became completely curable, and the isolation ofpatients was finally recognized as irrational. However, over the past few decades, former
patients have become old. Fujio Ohtani, a former Ministry of Health and Welfare bureaucrat,
regretfully recalled that it was difficult to allow old people suffering the after effects ofleprosy to leave leprosaria without the provision of social welfare. He thought, rather thanabolishing the segregation policy, ameliorating leprosaria conditions would be in their bestinterests. According to Ohtani, his “misjudgment” might have aided the Leprosy Prevention
Law’s continuation until the 1990s.34
In 1990, an event occurred among lawyers that changed audiences’ attitudes towritings and testimonies of former patients. A letter arrived at the Kyushu Federation of Bar
Associations from former patient Hiroshi Shima, containing the following:

11

For the past decade or so, I have been criticizing the inhumanity ofJapan’s leprosy policies, and have appealed for the abolition of the
Leprosy Prevention Law and for revisions to the Eugenic Protection
Law [this law gave approval for the use of sterilization and abortions forleprosy patients]… I cannot understand how those in legal circles, those
who are supposed to have the profoundest of involvements in mattersrelating to human rights, express no views on this matter and continue tostand by and watch.35
Hiroshi Shima’s letter prompted the lawyers to visit the leprosarium and collect testimonies ofpatients. Although the Leprosy Prevention Law was abolished in the following year, 1991, thelawyers felt that the negligence over the long-standing failure to take action should be
subjected to trials. Shima was motivated to write his letter by a letter he had received from
Noriyasu Akase, a plaintiff in a lawsuit over AIDS, which he had contracted throughcontaminated blood. In his letter, Akase said, “Why don’t Hansen’s disease patients get
angry?”36 The subsequent AIDS lawsuit focused on the negligence of officials from the
Ministry of Health and Welfare and hemophilia specialists who, despite knowing that theimported blood was infected with HIV, continued to administer it to patients. Thus,
hemophilia patients were driven to take the Japanese government to court. This helped Shimaand other former patients decide to highlight their unfair treatment in a judicial context as
well. Therefore, by the latter half of the 1990s, patients’ stories had been overwhelmingly
situated in judicial contexts. When claims were filed for national compensation, many life
stories of former patients, in the form of testimonies, were relayed nationwide. In 2001, alandmark decision by the Kumamoto District Court recognized state negligence among thedominant voices supporting the plaintiffs. Within the context of the court, the patients’testimonies were heard with enthusiasm, leading to the “discovery” of vast quantities ofwritings from the past. The dominant voices supporting the plaintiffs permeated newspaper
and television reporting. Furthermore, as a result of the judgment, a large section of theJapanese public began reading the writings of former patients.
Once the government had abandoned its appeal, following which Junichiro Koizumi,
the Prime Minister, met with former patients at his official residence, media attention
surrounding the “Hansen’ s disease problem” began to dwindle. The former patients’ judicial
victory seemed to signify the end of the “problem.” However, in November 2003, former
patients reemerged into the media spotlight. Former patients of the National Leprosarium
12

Kikuchi Keifu-en were refused a room when they tried to stay at a hotel in Kumamoto
prefecture. This incident revealed that the attitudes of the public had changed greatly within ashort time. Initially, criticism of the hotel owners dominated, until they visited Kikuchi
Keifu-en to apologize. The former patients, deeming the hotel owners’ explanation of events
insufficient, refused to accept the apology. Once the refusal was reported, Kikuchi Keifu-en
was inundated with letters, faxes, and emails that employed vile language to abuse the former
patients.37 To these anonymous critics, the former patients had “gone too far.” They had won
national compensation and “should behave with the modesty befitting weak people who
require care.” One of the hotel owners stated, “As long as discriminatory sentiments exist
among people, as hotel owners, we have no choice but to refuse certain people.” These words
thinly veil feelings toward leprosy that have remained unchanged for thousands of years.
Following this incident, my colleagues and I arranged a lecture to be conducted by
Yuji Kodama, a former patient, wherein he stated, “As we were continually subjected toverbal abuse from members of staff at the leprosarium, we were used to it. However, thisrecent incident was tough.” He was astonished by how people outside the leprosarium could
adopt such an unsympathetic attitude. Were the audiences of the former patients’ testimonies
in the 2001 court case and the anonymous critics of 2003 different people? Or had the sameaudiences assumed a different face?
Concluding remarks
In this chapter, I have argued how, in Japan, liberty-limiting interventions
perpetrated on people with leprosy constituted human rights abuse. Only through the patients’
writings and testimonies could we feel and know how “lifetime isolation” traumatized them:
They had to give up the life they expected, planned, and, in many cases, were actually living.
They accepted and endured forced and exploited labor in the leprosaria. They were coerced
into sterilization and abortion and the painful memories of these traumas. They had to act
submissive, frightened by the arbitrary punishment that led to 22 patients’ deaths at
Tokubetsu Byoshitsu.
I have also described how the victims’ and perpetrators’ stories were interpreted
differently, according to context. In the political context, patients likened the isolation policy
to Nazi Germany’s Final Solution, but the doctors believed isolation was in the best interestsof their patients. When the effective drug Promin became available in the 1950s, patients
appealed for it on accurate scientific grounds that leprosy is curable. Yet, the doctors testified
before the Diet in extremely political ways; they could not justify the legitimacy of isolation13

scientifically and ignored proven facts. The verbal battle ended with the doctors’ triumph.
Thereafter, the patients’ stories were seldom heard by politicians, lawyers, journalists,
academicians, and all others who remained silent or indifferent to the “Hansen’ s diseaseproblem.” Only in the 1990s, when the patients’ stories were put into the judicial context were
they actually heard.
In the literary context, some patients’ stories were celebrated as “leprosy literature,”
and as a great gift to Japanese literature. The stories vividly depicted patients’ life experiences.
But even leprosy literature did not gain patients a hearing, partly because the patients’ stories
had to be elaborate works that captured some degree of literary universality; therefore, leprosy
literature remained only within a literary context. Readers seldom questioned the assumptionthat the patients’ isolation was unavoidable and unchangeable.
Some argued that the delay in terminating this flawed policy was inertia and otherobstacles that had to be overcome first.38 However, a better question to ask is whether thedelay was ethically acceptable. The Japanese segregation of leprosy patients showed that
decades of delay responding to scientific facts as well as the fact that medico-politicalregulations can lead to traumatic human rights abuse. By failing to take prompt action for
decades, policy makers ensured that people with leprosy became old and died—isolated fromwhat they loved and from most of what makes life worth living. In conclusion, I invite readers
to thoughtfully consider a field that I call the “justice of listening”: When a person speaks toothers, should she have the right to choose the context of her story’s hearing? When she isunaware that her story is received in a context not in her best interest, should someone else
indemnify her and her story from harm?
Acknowledgement
I am deeply grateful to Yuji Kodama and Noriko Miyasaka for their support and warm
encouragement. I would also like to thank Crimson Interactive Pvt. Ltd. (Ulatus) and Enago(www.enago.jp) for their assistance in manuscript translation and editing, and JSPS for a
grant (KAKENHI Grant Number 22242001) that made it possible to complete this study.

References
Akashi, Kaijin. Hakubyo. Tokyo: Kaizo-sha, 1939, in Japanese.
Buckingham, Jane. Leprosy in Colonial South India: Medicine and Confinement.
Basingstoke: Palgrave Macmillan, 2001.
14

Burns, Susan L. “Making Illness into Identity: Writing “Leprosy Literature” in Modern Japan,”Japan Review 16 (2004):191-211.
Enemark, Christian and Michael J. Selgelid. “Introduction.” In Ethics and Security Aspects ofInfectious Disease Control : Interdisciplinary Perspectives, edited by Christian
Enemark and Michael J. Selgelid, Surrey: Ashgate, 2012, Kindle edition.
Eyre, George Edward and William Spottiswoode. Report on Leprosy, London : Royal Collegeof Physicians, 1867.
Fujino, Yutaka. ‘Inochi’ no kindaishi: ‘Minzoku joka’ no na no moto ni hakugai sareta
Hansenbyo kanja. Kyoto: Kamogawa Shuppan, 2001, in Japanese.
Hansen-byo iken kokubai sosho bengo-dan. Hirakareta tobira: Hansen-byo saiban wotatakatta hitotachi. Tokyo:Kodansha, 2003, in Japanese.
Horie, Setsuko. Ningen de atte ningen de nakatta: Hansen-byo to Tamashiro Shige. Toyama:
Katsura Shobo, 2009, in Japanese.
Ikai, Takaaki. ‘Sei no kakuri’ to kakuri seisaku: Hannah Riddell to Nihon no sentaku.
Kumamoto Shuppan Bunka Kaikan, 2005, in Japanese.
Kakar, Sanjiv. “Leprosy in British India, 1860-1940: Colonial Politics and Missionary
Medicine.” Medical History 40 (1996):215-30.
Kodama, Yuji. Shiranakatta anata e: Hansen-byo sosho made no nagai tabi. Tokyo:
Poplar-sha, 2001, in Japanese 67-71
K. M. (initial letters of the anonymous author). “Amefuri” (Rainfall), Nagashima Aisen-en
Kyoiku-bu ed. Nozomigaoka no kodomo-tachi. Tokyo: Sangabo, 1941.
Kikuchi Keifu-en Jichikai. Kurokawa Onsen Hotel shukuhaku kyohi jiken ni kansuru sabetzu
bunsho tsuzuri. Kumamoto: Kikuchi Keifu-en Jichikai, 2004, in Japanese.
Kuryu Rakusen-en Kanja Jichikai. Fusetsu no mon: the 50-year history of patients at Kuryu
Rakusen-en, Gunma: Kuryu Rakusen-en Kanja Jichikai, 1982, in Japanese.
Mitsuda, Kensuke. Kaishun byoshitsu: Kyu-rai goju-nen no kiroku. Tokyo: Asahi Shimbun,
1950, in Japanese.
Mitsuda, Kensuke. Aisei-en nikki: Rai to tatakatta rokuju-nen no nikki. Tokyo: Mainichi
Shimbun, 1958, in Japanese.
Otani, Fujio, Rai yobo-ho haishi no rekishi: Ai wa uchikachi joheki kuzure ochinu. Tokyo:
Keiso Shobo, 1996, in Japanese.
Riessman, Catherine Kohler: Narrative Methods for the Human Sciences. Los Angeles:
SAGE, 2007.

15

Setsuko Horie. Ningen de atte ningen de nakatta: Hansen-byo to Tamashiro Shige (Toyama:
Katsura Shobo, 2009, in Japanese)
Shunsuke Tsurumi ed. Hansenbyo bungaku zenshu (Collected Works of Hansen
Disease Literature), vol. 10, Tokyo: Koseisha, 2003.
Tama Zensho-en Kanja Jichikai. Kue Issho: Kanja ga tsuzuru zensho-en no nanaju-nen.
Tokyo: Ikkosha, 1979, in Japanese.
Zenkoku Hansenshi-byo Kanja Kyogikai (Zenkankyo). Zenkankyo Undo-shi: Hansen-shi-byo
kanja no tatakai no kiroku, Tokyo: Ikkosha, 1977, in Japanese.

16Endnotes
1

As Christian Enemark and Michael Selgelid remark, ethicists have to consider the

possibility of conflict between the promotion of public health and individual rights and thatbetween the protection of national security and individual rights. Christian Enemark andMichael J. Selgelid, “Introduction,” in Ethics and Security Aspects of Infectious Disease
Control: Interdisciplinary Perspectives, ed. Christian Enemark and Michael J. Selgelid(Surrey: Ashgate, 2012).
2This case is detailed in Kuryu Rakusen-en Kanja Jichikai. Fusetsu no mon: the 50-year

history of patients at Kuryu Rakusen-en (Gunma: Kuryu Rakusen-en Kanja Jichikai, 1982, inJapanese), 208.
3

Cited in Sanjiv Kakar, Leprosy in British India, 1860-1940: Colonial Politics andMissionary Medicine. Medical History 40 (1996):217.
4

Kensuke Mitsuda. Kaishun byoshitsu: Kyu-rai goju-nen no kiroku (Tokyo: Asahi Shimbun,

1950), 155-57.
5

In 1977, the nationwide patients’ association Zenkankyo published a chronicle of theiractivities for a quarter–half century. It stated that Japan’s leprosy control policy“distinguished people who are necessary to the nation and people who are unnecessary:
Patients with Hansen’s disease were regarded as worthless people, and aimed a fundamental
solution.” Zenkoku Hansenshi-byo Kanja Kyogikai (Zenkankyo). Zenkankyo undo-shi :Hansen-shi-byo kanja no tatakai no kiroku (Tokyo: Ikkosha, 1977, in Japanese), 37-38.
6Jane Buckingham. Leprosy in Colonial South India: Medicine and Confinement(Basingstoke: Palgrave Macmillan, 2001), 157-88.
7Tama Zensho-en Kanja Jichikai. Kue Issho: Kanja ga tsuzuru zensho-en no nanaju-nen(Tokyo: Ikkosha, 1979, in Japanese), 12-32.
8

Kuryu Rakusen-en Kanja Jichikai. Fusetsu no mon (Gunma: Kuryu Rakusen-en Kanja

Jichikai, 1982, in Japanese), 210-12.
9

Takaaki Ikai. “Sei no kakuri” to kakuri seisaku: Hannah Riddell to Nihon no sentaku.

Kumamoto Shuppan Bunka Kaikan, 2005, in Japanese.
10

Yutaka Fujino. “Inochi” no kindaishi: “Minzoku joka” no na no moto ni hakugai sareta

Hansenbyo kanja. Kyoto: Kamogawa Shuppan, 2001, in Japanese.
11

Kensuke Mitsuda. Aisei-en nikki: Rai to tatakatta rokuju-nen no nikki (Tokyo: Mainichi

Shimbun, 1958, in Japanese), 71-73.

17

12

Setsuko Horie. Ningen de atte ningen de nakatta: Hansen-byo to Tamashiro Shige(Toyama: Katsura Shobo, 2009, in Japanese).
13

Kuryu Rakusen-en Kanja Jichikai. Fusetsu no mon (Gunma: Kuryu Rakusen-en Kanja

Jichikai, 1982, in Japanese), 501-507.
14

Tama Zensho-en Kanja Jichikai. Kue Issho: Kanja ga tsuzuru zensho-en no nanaju-nen(Tokyo: Ikkosha, 1979, in Japanese), 136-138.
15

Catherine Kohler Riessman: Narrative Methods for the Human Sciences (Los Angeles:

SAGE, 2007), 3
16

Kensuke Mitsuda. Aisei-en nikkii (Tokyo: Mainichi Shimbun, 1958, in Japanese), 166-176.

17

Detailed in Kuryu Rakusen-en Kanja Jichikai. Fusetsu no mon (Gunma: Kuryu

Rakusen-en Kanja Jichikai, 1982, in Japanese), 271-77; Zenkoku Hansenshi-byo Kanja
Kyogikai. Zenkankyo Undo-shi (Tokyo: Ikkosha, 1977, in Japanese), 34-36.
18

Betty Martin. Miracle at Carville, New York: Doubleday, 1950.

19

Detailed in Zenkoku Hansenshi-byo Kanja Kyogikai. Zenkankyo Undo-shi (Tokyo:

Ikkosha, 1977, in Japanese), 50-56.
20This testimony was my translation from the official record of the Proceedings of the 12th

Kosei Iinkai, House of Councillors, The National Diet of Japan, vol. 10, November 8, 1951.
21

Paul Fasal. “The VII International Congress on Leprology,” AMA Archives ofDermertology 80 no.1 (1959): 91-92. The bureaucrat’s speech was documented in
Verification Committee Concerning Hansen’s Disease Problem. Final Report (Tokyo: Japan
Law Foundation, 2005), 622.
22

Susan L. Burns. “Making Illness into Identity: Writing ‘Leprosy Literature’ in Modern

Japan,” Japan Review 16 (2004):191-211.
23

K. M. (initial letters of the anonymous author). “Amefuri” (Rainfall), Nagashima Aisen-en

Kyoiku-bu ed. Nozomigaoka no kodomo-tachi. Tokyo: Sangabo, 1941. It is included inShunsuke Tsurumi, ed. Hansenbyo bungaku zenshu (Collected Works of Hansen Disease
Literature), vol. 10 (Tokyo: Koseisha, 2003), 270.
24

Yuji Kodama. Shiranakatta anata e: Hansen-byo sosho made no nagai tabi (Tokyo:

Poplar-sha, 2001, in Japanese), 67-71.
25

Kaijin Akashi. Hakubyo. Tokyo: Kaizo-sha, 1939. Anonymously translated in“Illuminating Ourselves,” IDEA 8, no. 1 (2003): 2.

18

26

Tanka is a genre of Japanese poetry comprising five lines with a pattern of 5–7–5–7–7

syllables in the respective lines.
27

Ibid.

28

Ibid.

29

Tmio Hojo. Inochi no shoya. Tokyo: Sogensha, 1936, in Japanese. Reissued by Tokyo:

Kadokawa Shoten, 1955, in Japanese.
30

Ibid (Tokyo: Kadokawa Shoten). 40-41.

31

Ryoji Mitsuoka. Hojo Tamio no hito to seikatsu. in Ibid (Tokyo: Kadokawa Shoten).,246-54.
32

Susan L. Burns. “Making Illness into Identity: Writing ‘Leprosy Literature’ in Modern

Japan,” Japan Review 16 (2004):191-211.
33

In November 2012, Zenryokyo (the nationwide former-patients’ association that took overZenkankyo), Zengenkyo (the council of plaintiffs of the lawsuits against the country), andKikuchi Keifu-en Nyusho-sha Jichikai (former-patients’ association in the National
Leprosarium Kikuchi Keifu-en) appealed to the Kumamoto District Public Prosecutors Office
for a retrial of his case. This case has been called “Fujimoto case” or “Kikuchi case,” detailedin Sawako Hirai. “Fujimoto jiken ni tsuite: ‘Shinso kyumei’ to saishin.” Kyudai-hogaku 84(2002): 161-235, in Japanese.
34

Fujio Otani, Rai yobo-ho haishi no rekishi: Ai wa uchikachi joheki kuzure ochinu. Tokyo:

Keiso Shobo, 1996, in Japanese, 250-56.
35

Hansen-byo iken kokubai sosho bengo-dan. Hirakareta tobira: Hansen-byo saiban wotatakatta hitotachi (Tokyo:Kodansha, 2003, in Japanese), 25-50.
36

Ibid.

37

Kikuchi Keifu-en Jichikai. Kurokawa Onsen Hotel shukuhaku kyohi jiken ni kansuru

sabetzu bunsho tsuzuri (Kumamoto: Kikuchi Keifu-en Jichikai, 2004, in Japanese).
38

Hajime Sato. “Abolition of Leprosy Isolation Policy in Japan: Policy Termination throughLeadership,” Policy Studies Journal, 30 no. 1 (2002): 29-46.

19