The Asia-Pacific Journal | Japan Focus Volume 16 | Issue 12 | Number 1 | Article ID 5156 | Jun 15, 2018

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Hansen’s Disease and Human Rights Activism in PostwarJapan: The Life of Usami Osamu (1926-2018)

Gregory Vanderbilt

Precis: A translation of an oral autobiographyof the life of Usami Osamu (1926-2018), thehuman rights activist and lead plaintiff in thelawsuit brought, and won in 2001, by men andwomen whose lives were taken away underJapan’s Hansen’s Disease (leprosy) absolutelifetime quarantine policy, in effect until 1996,who passed away on April 10th. A portion of hisashes will remain at Nagashima AiseienNational Hansen’s Disease Sanatorium inOkayama Prefecture where he lived for almostseventy years and another portion will beplaced in his family grave in Aichi prefecture,the reunion with the parents he struggled forthroughout his life.

Usami Osamu (photo by Lowell Brown,2007)

The Japanese human rights activist UsamiOsamu passed away on April 10, 2018, at theage of 91, at Nagashima Aiseien NationalHansen’s Disease Sanatorium, on an island inthe Inland Sea in Okayama Prefecture, where

he had lived since he was put under quarantinefor Hansen's Disease (leprosy) in 1949. Hisnational exposure came seventeen years ago,when he appeared on the front page of everyJapanese daily newspaper shaking the hand ofPrime Minister Koizumi Jun’ichirō as he and hisfellow plaintiffs began a hunger strike in frontof the Prime Minister’s official residence onMay 23, 2001, in an effort to appeal to him toaccept the Kumamoto District Court’s decisionin their favor in their lawsuit to restore the civilrights cruelly taken from everyone diagnosedwith Hansen's Disease in Japan long aftereffective antibiotics rendered the diseasetreatable. In the days that followed, thegovernment apologized, media and publicattention began to listen to the stories of themen and women whose lives had been hiddenfor decades, and many, but not Usami, returnedto their hometowns as elderly men and women,for the first time. In the decade that followed,until he slipped away into dementia, Usamitravelled widely around Japan and abroad, toBrazil and India for International LeprosyCongresses, to Myanmar to speak in schools,and to Norway to the hospital where thephysician Armauer Hansen first identified thepathogen Mycobacterium leprae in 1871.Speaking to schools, lawyers associations, civiland human rights activists, and medicalassociations, he was a critical witness to whathappened to him and his fellow recoverees ofthis heavily stigmatized but thoroughlytreatable disease.1

In fact, as he recounts in the translated oralhistory which follows, Usami’s activism beganas soon as he arrived at Aiseien and had hisfirst contentious encounter with its director,

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Masuda Kensuke (1876-1964), whosedomination of Hansen Disease policy in Japanand insistence on lifelong quarantine andsterilization of men long after it was outsideglobal norms remains divisive to this day. Overthe years leading up to the lawsuit, it took anumber of forms: leadership in the Aiseienresidents’ self-government association as wellas the All-Japan Hansen’s Disease SanatoriumResidents Associat ion (Zenryōkyō) ,membership in the Japan Communist Partywhich was allowed to register voters at Aiseienbeginning in the early 1950s, collection of alarge library related to all aspects of Japanesesociety’s mistreatment and dehumanization ofthose diagnosed with the disease, and thesingle-handed curation of the treasuredpossessions of his friends and the cast-offequipment of the hospital as a remarkablemuseum housed, ironically, in the “ImperialBequest Hall” built to honor the 2,600 th

anniversary of the Imperial Nation. (The stampof the Imperial Household is found not just inthe Taishō Empress’s portrait in Usami’smuseum but in stone monuments at Aiseien andmost all of the thirteen Japanese nationalleprosaria (plus two established in the colonies)carved with her famous tanka—directed toMitsuda and not the quarantined—calling onhim to “comfort them in my stead.”)

Usami was born in the western part of Aichiprefecture—the name of the city, Tsushima,was, of course, kept secret until recently—onJune 29, 1926, and arrived at Aiseien in early1949, his dreams of education and a “normal”life as a “healthy” citizen of postwar Japandisrupted. He was unusual in refusing ever touse a "leprosarium name" in place of his birthname and he was deeply hurt by the way histwo brothers hid his existence from theirchildren and banned him from paying hisrespects at the family grave. Finally, in 2009,thanks to the intervention of his loyal friendand supporter Namba Satsuya, he was able tomeet his eldest nephew, who promised to placehis ashes alongside his parents' in the family

grave when the time came. His nephew didhonor that promise at Usami’s funeral, whichwas held at Aiseien two days after his death,but the local newspaper also reported that aportion of Usami’s ashes will remain inBanreizan, the community mausoleum atAiseien, alongside his friends who went onahead after lifetimes of building a communityof hopefulness and friendship in the midst ofcruel policies, illness and stigma.2 He wasdetermined that the lives none of them chosebut which they made together will not beerased or forgotten.3

The following “Sunlight to the Depths of theSea” is an abridged translation of the oralhistory Usami dictated in 2007, when he waspast 80 and complications of diabetes hadseverely limited his vision, and published thatyear as the first chapter in a collection of hislectures, affidavits, and court testimonyentitled Nomichi no Kusa: Hansen-byō ZettaiKakuri Seisaku ni Mamukatta 70-nen (Grass onwild paths: 70 years of facing down the policyof absolute quarantine for Hansen;s Disease)(Mizuho Shuppan, 2007).

At the First Examination, Director MitsudaKensuke said “Usami, get the hell out!”

I believed that if I came here, to NagashimaAiseien, I could receive injections of Prominright away.4 I was 23 when I came to Aiseien. Itwas April 27, 1949 (Shōwa 24). It was aboutthirteen days later that the director, MitsudaKensuke, gave me my first examination. It hadbeen a long wait, a long-held desire, and I wasglad he was going to see me. I almost ran to themedical ward, telling myself that my Hansen’sDisease was going to be healed. Expecting aninjection, I presented myself to Dr. Mitsuda.

Instead I was asked, “Why didn’t you comehere sooner? What is it you don’t like about thisplace?”

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I answered, “Even though this is a nationalsanatorium, food, clothing, housing, andhygiene conditions are all poor. Four marriedcouples, eight people are sleeping in a twelve-and-a-half mat room, without so much as acurtain. This is inhumane. Even pigs wouldfight in such conditions.”

Mitsuda shouted back at me, “If you havecomplaints, then get the hell out now!” He wassaying he would issue a discharge order, whileenforcing the policy of forced incarceration.

I had no home to return to and no other placeto go and so this was a problem, but, figuringthat if he was telling me to get out, I had noother choice, I took off running. Soon I wasbeing chased by a nurse.

“Mr. Usaaaami, wait! Come back!”

He grabbed my sleeve and took me back to themedical ward. This time it was a differentdoctor.

“Sir, are you a communist?” he barked at me.

“Nihilist,” I answered.

“My, don’t you have a quick tongue…” he said.“You have nowhere to go now, do you? TheDirector explained the situation to me. You stayhere, Usami.”

I breathed a sigh of relief. Later I learned thatthis doctor’s name was Namba Masashi and hewas a graduate of Okayama University.

This incident had quite an impact on me.

The Reality of Director Mitsuda, “Savior-Father of the Lepers”

Dr. Mitsuda Kensuke was such a god-like figurethat he was known as “Savior-Father of theLepers” and “the Dr. Schweitzer of Japan,” but,as you can see from his attitude toward me, he

was no doctor who saved Hansen’s Diseasepatients. It is better to say that he was acriminal who deceived the medical world andthe nation into seeking the elimination of thedisease through his policy of l i felongquarantine, denying patients their humanrights.

In 1916, when he was director of ZenshōHospital, Mitsuda implemented the policy ofsterilization by vasectomy for male patientswho wanted to marry.

He was the one who declared that, “Becauseleprosy is a fiercely contagious disease that isinherited, it will be exterminated by forciblyquarantining patients from ordinary society.They must not produce descendants. Make thatthe law. Put them in shackles and force theminto quarantine.” That was his testimony beforeH e a l t h C o m m i t t e e o f t h e H o u s e o fRepresentatives of the Diet on November 8,1951. He had the government bu i ldincarceration facilities under the name“National Leprosaria” on islands and in remoteareas and initiated the forced incarceration ofHansen’s Disease patients. Patients surelythought that if they went to a nationalsanatorium, their disease would be cured. Ifyou hear the word sanatorium, you surely thinkof a hospital, but on arrival at the sanatoria,patients were put in a Kresol disinfectant bathand then made to sleep like sardines in acramped room. Patients with more severe casesof the disease were left to wait for death. Evenif they got sick, they were not given adequatetreatment. Less severely affected patients weremade to do manual labor or provide care forthe worse off.

My senpai, the patients admitted before me,suffered horrendous aftereffects of heavy laborand malnutrition and many died. Conditionswere cruel at that time. It was no way forhuman beings to be treated.

It was as the first director of NagashimaAiseien that Dr. Mitsuda ordered patients to do

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heavy manual labor. “Here will be yourparadise, so with your own strength, clear awaythe mountains and build roads and houses.That is your mutual aid, your work to repay allthe blessings you have received.”

Some could not stand the terrible conditionsand escaped but drowned trying to swim acrossthe sea. The ones who failed in their escapesand were captured were locked up in the prisonward.

One doctor spoke up in the Japan LeprosyResearch Association. This was Dr. OgasawaraNoboru, a native of Jimokuji Town, AmaCounty, Aichi Prefecture, and a graduate of themedical department of Kyoto ImperialUniversity. He stuck to his academicunderstanding: “Leprosy can be treated. Itscontagiousness is not strong. Forcedquarantine is not necessary.” He did not giveup. I respect him.

In 1934, Dr. Ogasawara lectured on “theessence of the extreme virulence of leprosy,”stressing “the weakness of its infectiousness,”but Mitsuda’s majority did not accept what hewas arguing and, ignoring the progress beingmade by the world medical community,asserted that “leprosy is hereditary andterrifying infectious.”

Forty-two years earlier, in 1873, the Norwegianbacteriologist Armauer Hansen had discoveredthe leprosy bacterium. Then, in 1943, theeffectiveness of the drug called Promin intreating the disease was proven in the U.S.

Unbelievably, at the fifteenth meeting of theJapan Leprosy Research Association, theMitsuda majority proposed a referendum that“Dr. Ogasawara Noboru be expelled from KyotoImperial University as a national nuisance” andsent it on to the university president. Theuniversity, however, let him continue toresearch and treat Hansen’s Disease in thedermatology department until he reachedretirement age.

It was terrible, unimaginably terrible.

After Dr. Ogasawara’s thesis was suppressed,medicine in Japan lost its way and merged withpower, planting mistaken ideas like prejudiceand discrimination in the people of the nation.Dr. Mitsuda and his followers were the oneswho destroyed the lives and the fates of thepatients and their families.

When revisions to the “Leprosy PreventionLaw” were debated in the Diet in 1951, Dr.Mitsuda testified that “leprosy patients must beuprooted, hauled away in shackles, and forciblyquarantined” and that “escape must becriminalized and escapees put in prison.”

Young doctors who did not know what Mitsudawas really like adored him and carried out hispolicy of forced quarantine. You can see this ifyou read Ogawa Masako’s Spring on a SmallIsland, which was also made into a movie.5

My comrades and I built a movement to rectifythe ignoring of our human rights, reform thecountry’s and Dr. Mitsuda’s ways of doingthings, and live like human beings. Some of ourfellow patients, however, believed that “ifDirector Mitsuda is so disagreeable to you, whydon’t you leave? If we oppose the state and itcancels the sanatorium budget and chases usout, we’d have nowhere to go. We’d die in aditch somewhere.” It’s a shame.

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Japan’s thirteen national and oneremaining private Hansen’s DiseaseS a n a t o r i a ( 2 0 1 6 ) . ( S o u r c e(https://apjjf.org/admin/site_manage/details/leprosyhistory.org))

An Attitude Visitors Cannot Believe Either

When I speak to visitors to the leprosariumabout the realities of life here, they have a hardtime believing that this could happen and theyalways question me on it.

To convey the truth of history to my fellowcitizens, individually and in groups, and tobui ld a soc iety wi th no pre judice ordiscrimination, it is necessary to do more thanpray and thank them for their charity. To thisend, I have been creating a “Hansen’s DiseaseMuseum,” preserving objects used in daily lifehere in the leprosarium and collecting booksand other materials.6 I’ve been working on itfor eighteen years and I’ve collected more than6,500 books.

Usami stands in the museum he created atAiseien, October 2001 (photo reprinted inNomichi no Kusa)

Real discrimination in society is directed notjust towrd people who have had Hansen’sDisease but also toward those with AIDS anddōwa mondai (against those defined as Buraku“outcastes”) and so on. I want to discern theserealit ies and make them right. I wantdiscrimination and prejudice to be eliminatedas soon as possible. How children developimages is a serious problem. I can sense thesame factors at work deep inside me.

Anyway, soon after I arrived at Aiseien, I wasalready labelled “a marked man.”

Strengthening My Resolve for Everyone’sSake

How did I keep my spirits up?

What I learned from my studies is thatHansen’s Disease has its own history within thelong, long history of humanity and that, thoughmedicine lagged in its treatment of Hansen’sDisease in the ancient and medieval periods,great strides were made in Europe and Americain modern times to conquer the disease and tobegin to eliminate prejudice towards thedisease in society. In Japan, however, advancesin medical knowledge in the world continued tobe hidden and the policy of absolute lifelongquarantine in the law lasted until just ten yearsago. Why? There were more causes than I cansay here, but the main cause was the mistakenideas and practices of the doctors. This mustnot be overlooked.

My talk today has ended up being about myrelationship with Director Mitsuda but fordecades I have wanted to break down thetaboos and the tendencies that turn people intoyes men for the “Mitsuda-ism” which forced outdoctors who were working to advance medicineand prevented us from being treated as humanbe ings . I have never wavered in mydetermination.

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When I became an officer in the residents’ self-government, my concern to put everyone’scollective needs before my own grew stronger.

As someone who does not talk about himself, Inever felt that this was odd or unnatural, justas anyone who does not want to recall a bitterpast praises the one who devotes himself tosociety.

My friends here at Aiseien, as well as friendsand acquaintances from the outside world oftensay, “Usami-san, we want to hear about youyourself…”

I answer this way: “Let’s skip my story. Wemust right the injustice of the leprosy policy ofthe Japanese state since the Meiji period inorder to calm the anguish of my friends herewho cry themselves to sleep because ofdiscrimination and those deceased patientswho cannot return to their home villages evenas ashes.” I continue the struggle.

Extraterritoriality in the Leprosarium

I was incarcerated at Nagashima AiseienNational Leprosarium on April 27, 1949. I was23 years old. Aiseien is on an otherwiseuninhabited island in the Inland Sea, in OkuTown (now Setouchi Ci ty) , OkayamaPrefecture.

It had been four years since the conclusion ofJapan’s War of Aggression which forced theJapanese people and the peoples of Asia totaste the unbearable. Two years had passedsince the Constitution had been put in place,coming out of contrition for that war.

With its pillars of the renunciation of war,fundamental human rights, and democracy, thenew constitution established that men andwomen are not to discriminate against oneanother and that all Japanese people are equalunder the law. However, the fundamental

human rights of Hansen’s Disease patients andtheir families were still not recognized, even inthe pos twar per iod , under the newconstitution.

The law did not prevail in the leprosarium.There was a prison inside the leprosarium,which is, after all, a hospital. Who was put inthere? Patients who challenged the Director.The Director had what was called “theauthority to detain and discipline.” There wereno courts. This was part of the authority of hisposition. It was finally abolished in 1953.

There was a prison here on this island. Hard tobelieve, isn’t it?7

I’ve Been an Officer for a Total of FiftyYears

I became the representative of District 1 of thecouncil of the residents’ self-government fordistrict one two years after I arrived at Aiseienand I have continued in that position for fiftyyears. Apparently, it was hard to find officersfor the residents’ self-government because thepatients who arrived before me were elderlyand had severe effects of the disease. I wasbrought into the self-government because I wasyoung and eager to be useful to my fellowpatients.

People who come to visit Aiseien often say,“what beautiful scenery… like a resort…,” andthey may be right, but that is becauseconditions here have improved greatly. When Iarrived, it was a sanatorium in name only.Living conditions were terrible. We were nottreated as human beings. Everyone was justwaiting to die.

We devoted our full efforts to having the 1931Leprosy Prevention Law repealed asunconstitutional under the new constitutionwhich guaranteed respect for fundamentalhuman rights, but, unfortunately, the Leprosy

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Prevention Law of 1953 left the bad law as itwas, ignoring fundamental human rights andonly changing the way leprosy (rai) was writtenfrom a Chinese character to hiragana.

However much we later worked on a movementto regain our rights, the bad law ignoring ourhuman rights did not go away. Since Aiseienwas going to be our permanent home, wechanged direction to a movement focused onimproving living conditions and welfare. As aresult, improvements have continued until theconditions you see today, but, fundamentally,the violations of the constitution have gone onunchecked and our human dignity has not beenrestored. A National Hansen’s DiseaseSanatorium is not a place for treating adisease. It is an institution for incarceration thesick in order to exterminating the diseasethrough their deaths. There was no way to bedischarged. It was a one-way street, with U-turns forbidden.

Suicide After Suicide

Frankly, you end up losing hope for living.

There were a lot of patients who committedsuicide by jumping off a cliff on the south sideof the island into the sea below. I myself havestood in that place, closed my eyes, tensed mylegs and shifted my weight forward... but Isuppose I lacked the courage and I’m still here.

I already mentioned that there was a prisonhere. There was also a crematorium and amausoleum. But no mortuary.

What happens when a resident here dies?

The officers of the residents’ self-governmentand people who were close to the deceasedaccompany the body from the hospital to thecrematorium, gather the firewood, and light thefire for the cremation.

What do I think happens when a body isburning? Have I been there?

It arches, while still burning.

Someone has to force it back into shape with aniron bar, with all their might. It’s the officers ofthe residents’ self-government who do that. I’vedone it, too.

Until about 1975, conditions here were reallyterrible.

Learning About Promin

I have loved reading books since I was a child.After I contracted the disease at the age ofeleven, I have bought and been absorbed inreading books about Hansen’s Disease. Booksl ike Hōjō Tamio’s Li fe ’s F irst Night(https://apjjf.org/2015/13/4/Hojo-Tamio/4256.html) and Leprosarium Miscellany, OgawaMasako’s Spring on a Small Island, and PerryBurgess’s Who Walk Alone (translated byUnami Mototada (Kaizōsha, 1941).

I must have been about twenty-two when I wasreading Readers Digest and came across thegreat discovery known as “the miracle atCarville” and was absorbed completely.

The contents of the article was this: “When asulfa drug manufactured by a Germanpharmaceutical company was diluted in aglucose solution and injected into patients atthe Carville Sanatorium in the United States,there was substantial improvement in a shorttime in the most hopeless of cases. The patientsare overjoyed. The name of the drug isPromin.” I’ll never forget reading that.

Until I read that Reader’s Digest article, I wasconvinced that Hansen’s Disease was incurableand that it plunged not just the sufferer butalso his family and relatives into the depths ofmisery.

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My Parents Did All They Could to ProtectMe

My parents fought hard to protect me,declaring that “We’ll treat Osamu’s illness athome.” After symptoms appeared when I was inthe fourth grade, they took me every week to anearby dermatologist for injections ofChaulmoogra (taifūshi) oil.8

I told my father about Promin and he walkedthe streets of Nagoya, inquiring at everypharmacy, “Do you have a drug called Promin?”Why did he keep his distance from thepharmacies in our neighborhood? Because hewas afraid of being ostracized if they knew.However, no pharmacy in Nagoya had the drugand none seemed to have even heard of it.Removing his shoes in the kitchen and restinghis tired feet, he whispered what he had foundto my mother and me, so that my youngerbrothers would not hear

Apparently Promin was not available in Japan.

What was there to do but give up?

As my despair deepened, my father heard that,“if we go to Tokyo, it’ll be available there.”Tokyo was still the burned-out plain left by theaerial bombings, but he went and was finallyable to buy some Promin on the black market.One hundred ampoules cost 15,000 yen. Fifteenthousand yen in those days would be manytimes what it would in today’s money. That wasthe fall of 1947. A dish of curry rice cost eightyyen. A year’s tuition at Keio University cost9,000 yen and about 8,500 yen at Waseda.

Through such strain and toil, my father finallyobtained some Promin but we could not use it.Since Promin must be injected into a vein, anamateur cannot do it.

Why didn’t we ask a doctor to do the injection?We wanted to, but we couldn’t.

The reason we couldn’t ask a doctor to do theinjection was that the local police, government,and populace were united in uprooting everylast Hansen’s Disease patient still at home andforcibly quarantining them in the leprosaria.Doctors had been directed to report anycontact with a patient to the health authorities.

I Choose the Path of Promin Injections at aLeprosarium

After about 1936, the Japanese governmentintensified its forced incarceration of patients,raising the banner of “ethnic cleansing” inorder to win its war of aggression.

Thus, since we could not ask a doctor to do theinjection, the only choice was for my parents todo it. It did not go well. My parents both triedto inject my arm, but however much they tried,they could not find a vein. My arm was coveredin blood.

The only way to be treated with Promin was togo to a leprosarium. Such was the LeprosyPrevention Law.

Having attempted suicide twice at home andnot died, and having lost hope for Promintreatments at home despite the efforts myfather had made to procure the miracle drug, Imade up my mind that the only path left for mewas to go to the leprosarium. No, it is morecorrect to say that my state of mind at the timewas resignation, not determination. That wasNew Years 1949.

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The main administration building atNagashima Aiseien, a symbol of themodernity of public health as nation-b u i l d i n g . ( s o u r c e(http://leprosyhistory.org/geographical_region/site/nagashima)).

Becoming Aware of How I Cannot SpeakAbout the Past

Now, however, I am discovering that I runaway from talking about myself and that I amunable to tell my own story.

Like memories of my hometown.

Talking about home is like rubbing salt into anopen wound you might get from falling down atthe school games.

I am still persecuted by the place I was born. Iwas told by my father that “we’ve burned allyour books,” and by my mother, “Osamu, youno longer have a home to come home to. Youwill die here” at Aiseien, and by my olderbrother, “Father is dead. You are to relinquishyour inheritance. Put your seal here.” Myfeelings for my home are not easy to discard.Sometimes tears well up when I think that Ihave nowhere to go home to.

Whenever I hold the one photo of my parents Ihave in my room, I am flooded with emotion.

At First I Could Not ContemplateBecoming a Plaintiff

The impetus for the lawsuit to prove theunconstitutionality of Japan’s Hansen’s Diseasepolicies?

Well, in March 1996, the government finallyrepealed the Leprosy Prevention Law, bringingan end to the forced quarantine policy that hadcontinued for ninety years. The Minister ofHealth, Kan Naoto, apologized, but thegovernment did not recognize the truth of thewrong it had committed or its responsibilityand it did not offer any reparations. It wastrying to quietly bury the atrocity of theviolation of our human rights by the State.

In September 1995, Shima Hiroshi had writtena letter to the Kyūshū Legal Association.9 Itsaid, “One would think that no one would havea deeper concern for human rights than thelegal profession and yet you continue to sitback, offering no analysis or statement aboutthe Leprosy Prevention Law.” It was this letterfrom Shima-san that got the attorneys to riseup and moved history towards our court battle.

The lawsuit was filed in Kumamoto DistrictCourt on March 1, 1998. On that day, thethirteen plaintiffs, including Tateyama Isao-san,Shimura Yasushi-san, and Mizoguchi Seiji-san,issued this statement:

“Is it acceptable to allow the cruel acts of Statepower to go unquestioned? How will the Statebring healing to the isolation and regrets of weresidents of the leprosaria who have nochildren or grandchildren? … Through thislawsuit, we intend to make clear the history ofand responsibility for the government’sHansen’s Disease policy:

Why did the unprecedented abrogation of1.human rights in the name of the Statecome about , in v io la t ion o f the

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Constitution of Japan? [We seek] toexpose the truth, make clear theresponsibility of the state, and achievereparations for damages. We aim to restore every violation of2.human rights to their original condition,grounded on the state’s responsibility.We will keep the State from allowing this3.error to be repeated.

When these have been achieved, we intend tohold memorial services for our forebears whorest in the mausolea in the leprosaria acrossJapan to bring healing to their sufferings.”

I was moved by their courage.

Was I late in joining the plaintiffs?

Looking back at that time, I am filled withregret. I repent for the weakness of my ownheart. Even now tears of remorse come to myeyes.

When I was invited to join the plaintiffs, Ihesitated, telling the group that “I don’t wantto repeat the divisions within the sanatoriumthat occurred in 1953 with the ‘LeprosyPrevention Law Struggle.’ But I will help.” Iwas a coward.

In my heart I had been defeated by selfishnessbecause I was thinking, “if I can, I want to diein my beloved hometown and rest for alleternity beside my parents. I want to sharetheir grave.”

Then, at the question-and-answer time after alecture, I was called out by a student. “Usami-san, why aren’t you a plaintiff? Isn’t there adifference between what you are saying andwhat you are doing?” I couldn’t answer him.The frankness of youth had hit my weakness onthe head.

Though I had been saying “We are strugglingagainst injustice” and “we will fight hard andnot be defeated by persecution. Please support

us,” I was unwilling to join the plaintiffs. Later,when I had joined the legal struggle, I reflectedgreatly on how weak had been my ability tograsp the profundity of fundamental humanrights, human dignity, and the Constitution ofJapan.

At the time, I was consoling myself andrationalizing my decision by assuring myselfthat the court would find the law and policiesunconstitutional.

Provoked by Anger, I Join the Plaintiffs

When I talk about those days, I am still soembarrassed that my face turns red. Butsomething happened that led me to cast off thethinking that was holding me back.

The anger that pushed me to join the plaintiffswelled up in me.

It was when I heard the contents of the draftdefense the government submitted in responseto the lawsuit in Kumamoto District Court.

It said: “In that the quarantine policy forleprosy patients which existed in Japan forninety years was in no way counter tointernationally accepted knowledge, nor todomestic knowledge, and since it provided forthe humane treatment of patients, it was notunconstitutional.” “Since vasectomies andabortions were performed with patient consent,they were not forced.” “For ninety years, thegovernment carried out its leprosy policy withcharity and generosity.”

When I heard the government’s arguments, myblood boiled.

How could they say such things? What aboutthe blood and the tears that had been shed?These a rguments were comp le te l yunacceptable. They offered no excuse orapology to all our forebears who suffered and

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suffered and were now gone from this world.

What spurred my heart and mind into actionwas this.

I decided to join the plaintiffs in the KumamotoDistrict Court case so that there would besomeone from Nagashima Aiseien.

Aiseien was behind our comrades in Kyūshū,but on June 2, 1999, fourteen of us fromAiseien, including Sakurai Yūtarō, IkeuchiAritomo, Kawashima Tamotsu, and me, joinedthe plaintiffs in the fifth filing.

Later, suit was filed in Okayama District Courtand I was part of the Okayama plaintiffs group,but at the time I was still not confrontingdirectly the contents of my own heart and myknowledge of the constitution was stillsuperficial.

A plaintiff is required to submit an affidavit tothe court. For me at that time, that was themost difficult of assignments. I couldn’t talkabout myself. Maybe this was a peculiar kind ofpride, but clearly I was weak. It was not justonce or twice that that the attorneys told me,“Mr. Usami, unless you speak about the facts ofthe damages you and your family have suffered,there will be no lawsuit.”

After we won the lawsuit and the whole text ofthe judgment was read to me, I wept to myselffor my arrogance and shabbiness of character.

When I met Mizoguchi Seiji-san in Tokyo, Iapologized directly to him for my cowardice.Sumanakatta.

We Were Ready to Die, But We WantedHim to Say “No Appeal”

The court system in Japan allows the losingside in a case fourteen days to appeal thejudgment. If the government appealed thejudgment and our legal struggle went all the

way to the Supreme Court, it might end uptaking ten to twenty years for the judgment tobe affirmed. If that were the case, I wouldprobably be dead by the time the court ruled.

The deadline for appeal was May 25th and Iresolved to do everything I could until thegovernment declared it would not appeal, evenif I died in the process. Every one of theplaintiffs shared these feelings.

Together with the legal teams and all of oursupporters, we plaintiffs shifted our struggle to“Government, No Appeal!”

I have been alive for seventy-five years, but Idon’t know how to describe those ten days,those 240 hours. Anyway, we were fightingwith all we had.

Images flashed before me: my father, mymother, my two suicide attempts, DirectorMitsuda yelling at me to “get the hell out!,” thefaces of all my forebears who sleep in themausoleum unable to return to theirhometowns even as ashes… From the bottom ofmy heart feelings welled up: if I had died then,I would be feeling what I’m feeling now. It’sgreat I’m alive! We are not defeated!

Determined, We Protest Even If It CostsOur Lives

As one, two, three days passed, there was anintensely strong backlash in the governmentand the Diet that “the Kumamoto District Courtjudgment must not be recognized.” Thenewspapers started to report that the thinkingthat was spreading in the government was“appeal, then negotiate.”

We were ready to do what it took, includingholding assemblies and sit-ins in front of thePrime Minister’s residence and the Dietbuilding.

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Since we plaintiffs might meet with the PrimeMinister and did not want to be impolite, wedecided we would wear coats and ties. It wasMay and the sun was beating down like mid-summer and there was concern that someamong us would suffer heat stroke or even dieof the heat.

We all came to the realization that “We’ve beenwaiting for ninety years. However much wemight have to wait now, we’d rather wait thanaccept a half-baked resolution.”

Finally, the Minister of Justice MoriyamaMayumi came to meet with us in her officialoffice. One by one, we earnestly told her of ourexperiences. When we were finished, she said,“I see. I will consult with the Prime Minister.Please wait for a while.”

Then Mizoguchi Seiji-san from Kyūshū repliedquite formally, “We understand. We will behappy to wait while you are considering thesituation. We will wait here in the Office of theMinister of Justice.”

“Wow! Mizoguchi-san, you’re great!” I thoughtto myself, applauding him in my heart.

Back at the sanatoria, hunger strikes hadstarted. There was continuous news coverageon television and in the newspapers. Citizensand supporters from throughout the countrywere flooding the Prime Minister and Ministerof Health and other officials with faxes andpostcards calling for “No Appeal!”

Every member of the Diet with a heart, from allparties, found a room in the Diet Building toserve as struggle headquarters and workedtheir hardest to ensure that there would not bea half-baked resolution.

As we plaintiffs and representatives of the legalteams began our sit-in in front of the PrimeMinister’s Official Residence, we wereinformed by security that if we continued, wewould be “removed.” If we kept up our

confrontation, security would use actual forceon us. Crossing political party lines, a group offemale lawmakers surrounded and protectedus.

This was cause for happiness. At that moment Itruly felt that when you are giving all you haveto fight for justice and truth, your struggletranscends political positions and spurs peopleinto action, everyone pulling together andcharging forward like a scrum in rugby.

Shaking Hands with Prime MinisterKoizumi

Having joined together in struggle even todeath, we found that the new prime minister,Koizumi Jun’ichirō, was willing to meet with theplaintiffs.

At first a secretary told us that “as the PrimeMinister is a busy man, ten minutes are allottedfor this meeting,” but I believe it lasted forabout an hour.

When one woman among us told him that, “Iwas made to abort my baby. A life that hadalready begun was lost. I want my baby back,”he hung his head, truly at a loss for words.

Koizumi listened to our earnest plea “Please donot appeal” and finally grasped hands witheach of us.

We all felt that with that handshake Koizumihad dropped the appeal, but the eveningnewspapers reported that “Governmentproceeds to appeal.” Our hearts were inturmoil. There were developments minute-by-minute.

Then, a press conference was called in aconference room at the Legal Association andreporters were called back. What washappening? My heart was pounding.

When we entered the neighboring meeting

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room, we were greeted with cheers. What isthis? I asked the person next to me.

“The television screen is saying ‘Prime MinisterDrops Appeal.’”

When I heard that, my body went limp and I feltas if I were riding on a satellite, floatingthrough space.

In the photo that appeared “above thefold” in every Japanese daily (here fromt h e M a i n i c h i(https://mainichi.jp/articles/20180412/ddl/k33/040/509000c)) on the morning of May 24,2001, Usama shakes hands with PrimeMinister Koizumi Junichirō as his fellowplaintiffs Chiba-san and Kunimoto-sanlook on.

Hot Tears of Joy

We were all weeping. Holding each other andsobbing.

If you turned to either side or looked behindyou, there was someone in tears.

I, too, was completely in tears.

For the first time in my seventy-five years, Iwas drenched in tears of joy.

Tears of happiness are warm, even hot.

Those were my genuine feelings. Nothing fake.

Tokuda Yasuyuki-san, the head of the plaintiffsgroup, sat on a sofa with his coat over his head,sobbing. Even though reporters were waiting tointerview him, he couldn’t tear himself awayfrom that sofa.

Once we had contained our emotions, anotherset of honest feelings crossed our minds: why,when it was the government and the Diet whichdid these terrible, unconstitutional things, werewe, who had lived this destiny of unspeakablesuffering, the ones who had to bow our headsand plead with them?

The news that “Government Drops Appeal” wasreported in the newspapers on May 24.

Those newspapers ran the photo of me shakinghands with Prime Minister Koizumi.

My Feelings Renewed, Another ChallengeAwaits

It was about three years after our victory in thelawsuit. The Inland Sea was glistening in thespring sunshine and the cherry blossoms werenearing full flower when an acquaintancevisited me from Nagoya on a calm, sunny day.

“Usami-san,” he told me, “there’s this motherin her thirties who said to me, ‘I had no ideathere were such pitiful people in Japan. Mr.Koizumi was so courageous to come to theiraid.’ ‘That may be so,’ I replied, ‘but the oneswho showed true courage were the formerHansen’s Disease patients themselves, andtheir attorneys and supporters. It was becausethey put everything on the line that Koizumi

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stopped the appeal,’ I explained to her. Thenher face grew anxious. ‘I wonder if my childrenwill get Hansen’s Disease,’ she asked. I wantedto keep talking with her but…”

“I can’t really blame her,” I replied.

“I wanted to talk to her in easy-to-understandterms, and I’m frustrated at not being able todo a good job.”

“I wish the national and local governmentswould make more of an effort...”

“Then everyone involved has to make a positiveeffort to accomplish that.”

“And we have to argue for living human rights,not charity or comfort.”

That was our discussion as we sipped our tea.

I realized that I would have to take on anotherchallenge. Though we had won the lawsuit,there was still work to be done in society sothat people would not be prejudiced ordiscriminate against each other.

When I became a plaintiff, I had to tell the storyof “my own life and experiences” in court and Irevealed what was in my heart. And we won.

When the judgment was affirmed, Ms. SekoYukiko hugged me and said, “Usami-san, nowit’s time for you to go home to Aichi, don’t youagree?”

“My brothers are still there, so I can’t gohome,” was the only answer I was capable ofgiving.

Her kind words were meant to encourage.

I wanted to return to my hometown, but I couldnot. That was the reality of society.

These feelings were like a knife in my chest.

Many Usami Osamus in my Heart

I am a Hansen’s Disease sufferer. Just with thatI have experienced suffering and humiliationthat cannot be described. I have had to endurethe outrages of society and government. It iscertain that there have also been benefits fromthese experiences. That is what I learned fromthe court struggle.

‘If you are going to build a society withoutdiscrimination or prejudice, you can’t run awayfrom difficult realities,” one self inside mescolds another. There are a number of selvesinside me.

Unless the seeds in the heart are smashed, wecannot eliminate from this world the heart thatnurtures the discrimination and prejudice thatmust be recognized as human nature. Tochange government and society, I must firstchange myself, I came to understand listeningto myself.

Here, I suppose, is the final barrier I mustovercome.

I’ll never be able to forget what West GermanPresident Richard von Weizsäcker said twenty-two years ago in 1985, on the occasion of thefortieth anniversary of the end of World War II:“They who close their eyes to the past willultimately be blind to the present. They who donot carve the memory of inhuman actions ontheir hearts will easily be swept up in futuredangers.” Repenting for his own country’s actsof aggression and looking at history directly, hemade quite an impression with the words of hisaddress to the world, entitled “Forty Years inthe Wilderness.”

What I can do, I thought to myself, is testify tothe facts of history as someone who hasactually experienced Hansen’s Disease and tellmy story as a living witness in order to build asociety where this will not happen again.

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Here, I thought, is the way to use what abilitiesI have to regain my own humanity. Surely therecan be no restoration of our humanity withoutbuilding bonds, person-to-person.

Usami travelled widely, thanks to devotedfriends. Here he is in India in 2008,speaking at the 17th International LeprosyCongress held in Hyderabad, along withm e m b e r s o f I D E A - J a p a n(https://www.idea-jp.org/) .

I Have Been Able to Live Because of MyFriends and Comrades

I have lived in a leprosarium for over half acentury and so clearly it has become my secondhometown. Do I have the luxury to think that itwill be my final home? Or would that be amistake? Probably best to avoid such athought.10

Even though I have only bitter and sadmemories of my hometown, my old hometown,the longing to go home, just once, comes andgoes in my heart.

At the same time as I have a strong desire topay respects at my parents’ grave and thenholding a chrysanthemum bid this worldfarewell, I am old now and blind and cannot

walk without a cane, and so I wish just asstrongly to breathe my last breath quietly, hereat Nagashima Aiseien, my second hometown,surrounded by those with whom I have sharedso much joy and sadness. Those are my honestfeelings.

These feelings are the modest yearnings sharedby the former Hansen’s Disease patients livingin leprosaria for their final days. These aretheir real feelings, not hidden by any lies.

But what makes me truly happy is to be able totalk to everyone here.

I have never married and of course I have nochildren or grandchildren, no descendants.When I think of this, I am so filled with regret.

What I do have are my friends. My comrades-in-arms. There is no limit to the kindness andcomfort they offer. Religious charity isimportant, but it has its limits.

I believe that in order to resurrect our humanrights we must build a government and asociety that brings the constitution to life.Everyone I see daily here at Nagashima Aiseienand my friends at leprosaria throughout thecountry who share this hope have given memuch encouragement.

I may have no home to go home to and nofamily, and I have these handicaps, but I rejoicethat my heart is knit together with tens or evenhundreds of friends. I call them my comrades.

When we won the lawsuit, I regained mycourage when I realized that we are no longerthrown away by the Japanese people. I’m gladof that.

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Banreizan, the collective mausoleum atNagashima Aiseien, following its post-lawsuit renovation.

Life is what still lies ahead

Oddly enough, in a certain sense, Hansen’sDisease patients are all equal. The family I wasborn into was known locally to be rather welloff. As a result, they were able to buy Prominillegally. Even so, what mattered was my illnessand because of it, I was cut off from my parentsand brothers. It was so cruel.

When I arrived on this island and was strippednaked and put in the Kresol disinfectant bath, Ientered a society where whether or not you hadproperty outside matters not one bit. Likewisemy individuality and my dreams for the futuremean nothing. The sum total of Usami Osamuwas this: (former) Hansen’s Disease patient.

In modern society from Meiji to Heisei, we

former Hansen’s Disease patients have beenmade to live under government policy for “thegoal of extinction.” Our families also facedhardships: suicide, divorce, prejudice

State policy was to have us “live in order tobecome extinct,” but it can be said of each andevery one of us, “we lived, we survived.”

The “strength that allowed us to survive”showed itself when the government lost thelawsuit on May 23, 2001.

Into the darkest depths of the sea, where thelight of the sun has never before reached, thereat last sunlight has started to break through.Out of this aspiration to live a life neverdeviating from the path of peace and socialprogress so that the warmth of the light ofwelfare and of the truth of the Constitutionmight reach the weak and mistreated, I becamea member of the Japan Communist Party andnow I intend to value the remaining life thathas been granted me and to continue my workas a kataribe, a living witness. Life is what lieshead...

I continue to believe that the truth has thepower to change human history and lead tosocial progress.

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Notes1 Usami uses several terms here—kanja and moto kanja (patients/former patients), nyūshosha(“residents”/admittees), and byōyū (friends in illness)—while rejecting the word raisha asdehumanizing as its English equivalent leper. Likewise, since the 1950s, the term Hansen-byō(Hansen’s Disease) has replaced raibyō in general and scientific discourse, with the latterconsidered far more stigmatizing than the English leprosy, which remains common in manyparts of the world. Usami also uses the term shūyōjo (incarceration/ concentration facility)which is often used to translate both Nazi concentration camps, a comparison Usami himselfmade in the pages of Time magazine in 1996 following the repeal of the Leprosy PreventionLaw, and Pacific War-era U.S. and Canadian “relocation centers”/internment camps for theircitizens and residents of Japanese ancestry.2 See here (http://www3.nhk.or.jp/lnews/okayama/20180412/4020000182.html) and here(http://www.sanyonews.jp/article/698507/1/).3 A month after Usami’s death, the two leprosaria located on Nagashima Island—Aiseienwhich was opened in 1931 as the flagship of a new system of national institutions replacinglocal and missionary hospitals and Oku Kōmyōen which was relocated from Osaka Bayfollowing the Muroto Typhoon of 1934—celebrated the 30th anniversary of the “Bridge ofRestored Humanity” which connects the island across a narrow strait to Honshū. At that timeit was reported that the combined population of the institutions was down to 261—nearly7,000 having died there—with an average age of well over 85. A move is underway to registerthe two institutions, as well as Ōshima Seishōen on another Inland Sea island, as UNESCOWorld Heritage Sites. Perhaps Usami would have agreed. See here(http://www.sanyonews.jp/article/712098/1/).4 The first effective treatment for Hansen’s Disease, the sulfone antibiotic Promin wasdeveloped at the United States Public Health Service Hospital in Carville, Louisiana, in theearly 1940s and was introduced into Japan during the Occupation. 5 Ogawa Masako was a doctor at Aiseien in the late 1930s. Her 1938 memoir Kojima no Haruwas made into a popular film in 1940. 6 Following the lawsuit, a professionally-curated museum (http://www.aisei-rekishikan.jp/) was

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established in the former administration building and many of the artifacts Usami collectedare now displayed there.7 Although the jūkanbyō at Aiseien is only a ruin with a historical marker, the one at KiryuRakusenen at Kusatsu, where numerous patients froze to death, has been reconstructed as amuseum (http://sjpm.hansen-dis.jp/eng/?lang=en). That work was led by Usami’s comradeKodama Yūji (1932-2014)8 Prior to the development of antibiotics, oil extracted from the fruit of the tropicalChaulmoogra tree was the only medical treatment available. There is some debate as towhether it was at all effective.9 As Usami indicates here, Shima Hiroshi (1918-2003) was among the leading and mostforward thinking Hansen’s Disease patient-activists. A novelist and editor as well as politicalactivist, he spoke out about the parallels between the Hansen’s Disease experience and howJapanese infected with HIV were being treated in the 1990s and called for the repeal of thehated law. After making a life at one leprosarium in Kagoshima Prefecture, HoshizukaKeiaien, for fifty years, he exercised his hard-fought right to “return to society” for the lastseveral years of his life.10 Usami is referring to a major cause of unease among the remaining residents of Aiseien andthe other national sanatoria: the question of whether, as their numbers decrease and theirneed for care compounds, the Ministry of Health, Labor, and Welfare may decide to break itsoral promise and forcibly relocate them once again as a consolidating and cost-savingmeasure.